This International Day of Persons with Disabilities, I had the very unique privilege of spending the day with the UK High Commissioner and the British High Commission team to discuss how Canada-UK relations can and must centre disability inclusion and accessibility in multilateral diplomacy, similar domestic and foreign policies, economic growth and trade resilience strategies, and international leadership on critical security issues.
While I could give you a play-by-play of the day (which honestly felt more like a Make-A-Wish than my actual Make-A-Wish) I want to try something different.
I genuinely believe we as a society have finally reached a level of disability awareness that enables us advocates to go beyond basic awareness-raising and into tricky, complicated, unresolved issues.
International Day of Persons with Disabilities means a lot of things to a lot of people. For me, quite honestly, it usually means hiding in my bed, scrolling through socials, tracking who even acknowledges the day, and who ignores it outright.
It means watching ‘progressive’ organizations and activists fail to include disability in their version of intersectionality. It means watching the frenzy of last-minute, we-forgot posts flood in around 3pm. It means I’ll be reminded that for some, disability remains an afterthought at the very best.
On the other hand, it means rolling my eyes at stock images of disabled people the poster has never met. It means yelling out loud to myself when I see outdated language. It means typing angry comments and deleting them over and over. It means holding my tongue when service providers emphasize our economic productivity and labour potential without addressing the legislated disability poverty crisis.
In short, it means a lot of things.
But I want it to mean something different. I want the International Day of Persons with Disabilities to reflect our everyday realities, that can champion our potential without shying away from the barriers we face.
I want IDPD to be an encouraging and effective call to action for disability allies – one that teaches them about our rich history of fighting for civil, social, economic, political, and cultural rights. One that demands progressive movements include disability in all aspects of their work. One that addresses all of the systemic forces of oppression at play to keep disabled people in place – out of work, out of school, out of the community.
But above all, I want IDPD to be a celebration and continuation of the disability rights my disabled ancestors fought for. The rights that I was born with, the rights I grew up with, and the rights I choose to fight for today.
We are beyond disability awareness. We are starting to understand disability inclusion. But we are not going to get anywhere without disability rights.
And for me, in practice, realizing disability rights requires engaging in the tricky and complex debates most people assume disabled people have never even considered. Realizing disability rights requires that we make ourselves seen, heard, and known in all aspects of life.
Realizing disability rights requires that we get involved in all aspects of political and policy debates, including military and economic security.
I know! Curveball! Where did that come from! (Got you, we just talked about this…)
While I don’t often bring it up, my undergrad in international development and conflict studies has deeply influenced my approach to advocacy – but I could never figure out how to share those influences without it feeling too academic-y.
Since starting grad school just a few months ago, this struggle to connect my academic life to my advocacy work has been viciously gnawing away at my brain.
I realized that if I was going to be able to mentally cope with momentarily taking a break from the grassroots, I had to find a way to ensure whatever nerdy stuff I got up to would somehow find its way back to – and benefit – the community.
It wasn’t until writing this blog that I realized I had to do the same with my undergrad too.
I’ve also been acutely aware that with the new national government, my federal (non-partisan!) advocacy work was going to have to shift to meet evolving political priorities.
One of the main reasons that I’m an advocate and not an activist is because I genuinely believe that working with people in positions of power will be the most effective way of delivering real, impactful, and desirable change for the disability community.
The values, aims, and ends of my advocacy remain the same – I just communicate it to certain people in new ways. The goal will always be the full realization of disability rights at home and abroad – but the way we’re gonna get there will naturally shift with time.
So, I hope you guys can appreciate this new experimental approach, and that little behind-the-scenes of my advocacy work.
At best, we all learned something new. At worst, I do the usual “what IDPD means to me”/“disability rights revamped” blog-gy bit at the end.
Be brave.
As I prepared to spend the day with the UK High Commission to celebrate the International Day of Persons with Disabilities, I found my usual speaking points weren’t resonating the way they used to.
While I had spoken on international disability rights, I’d never taken a crack at specific bilateral disability relations. After about a year of silently feeling stagnant, this was the challenge I needed to revitalize my own advocacy work.
While the whole military and economic security thing felt a little out of my wheelhouse, it was now or never – since the UK High Commissioner and his team were stuck with me for what felt like a Make-A-Wish-y amount of time. (And yes, I told the entire team this.) So, I spent hours developing some points on disability-inclusive diplomacy, defence, development, and trade.
Here goes:
As we know, the world is rapidly shifting under the escalating polycrisis of climate change, conflict, economic inequality, democratic backsliding, and so much more. As Canada and our allies seek to strengthen our militaries, economies, and people, disabled people cannot be forgotten.
In fact, I believe that disability inclusion can play a critical role in promoting meaningful, transformative change that not only improves overall efficiency and adaptability, but addresses deep-seated issues of inequality and barriers to access.
Here’s just a few ways how:
Economic Growth
Canada, like other G7 countries, is facing relatively slowed productivity. Simply put, our economies have reached a level of development that resists further innovation and adaptation. After years of stagnation, our positioning in the global economy grows increasingly precarious. But, as mainstream economics has begun to realize, our countries are full of untapped, skilled, ready potential.
Many disabled people want to work – in fact, the Convention on the Rights of Persons with Disabilities recognizes the importance of meaningful work and the need to remove barriers to participation. However, the labour market remains inaccessible. With the majority of accommodations carrying zero financial cost, and the remainder of accommodations averaging out to about $300-$500, these are minor investments in unlocking massive potential.
Trade Resilience
Us Canadians have seen firsthand just how quickly a long-standing, cherished relationship can (literally) go south. Today’s unanticipatedly unstable global economy is a wake-up call for countries to diversify trade partners, encourage domestic manufacturing, and to leverage economic concerns to meet social and security aims.
We know that disability and neurodivergence-inclusive workplaces are more productive, more flexible, and more adaptable. Disabled and neurodivergent workers experience the world differently, and their experiences and resulting insights contribute to more agile workplace policies and practices.
These agile and reflexive firms are better prepared to adapt to acute and chronic macroeconomic shocks, and could provide a foundation for building an inclusive economy that meets the needs of all Canadians.
Democratic & Diplomatic Representation
To make the most effective, relevant, and practical decisions – we need the right people at the table. From trade talks to peace talks, we know that the right guest list is the very foundation of strong and effective negotiations that deliver tangible and impactful change.
Yet, too often, when we talk about disability – disabled people themselves are left out of the conversation.
Having champions of the disability community with lived experience actively participate in critical negotiations and debates is essential to informing policies and programs that actually reflect and meet the needs of all Canadians.
Canada has long been a leader on the international disability rights stage. Whether it’s the protection of child soldiers, prohibition on land mines, drafting the Convention on the Rights of Persons with Disabilities, or guiding its ratification on the Committee – Canada has a long, but often forgotten, history of championing international disability inclusion.
Canada also has, in my opinion, the most sophisticated youth disability delegate program in the world. As a former delegate myself, I witnessed firsthand how having youth embedded in governmental delegations transforms the agenda and encourages candid discussions on emerging disability issues.
As our generation inherits an increasingly troubled world, I want to encourage all CRPD delegations to ensure youth participation. Youth are not the future – youth are now. We must be provided with critical opportunities to develop our skills, networks, and voices to champion intergenerational change.
Domestic Human Security Approaches
As our countries pivot towards more security-oriented agendas, we must remember that security is not exclusive to the international realm – and that human security must start at home.
If our societies are to respond to an increasingly complicated and unstable world, we must have the internal capacity and resilience. A human security approach prioritizes meeting a population’s basic needs – such as health, education, nutrition, and sanitation.
This may sound obvious. But for the disabled recipients of disability assistance programs legislated into poverty, they struggle to meet their basic needs everyday. They are forced to choose between keeping the heat on, or putting food on the table. And sometimes, this legislated poverty prevents them from either.
To build a united, resilient, adaptable society prepared to respond to unimaginable circumstances, we must first ensure all members of our communities have their most basic needs met. Addressing this completely resolvable issue would foster individual belonging, community inclusion, and societal participation. When our individuals feel secure, when our communities feel connected, when our societies feel united – only then, can we band together to face the daunting challenges ahead.
Disability-Inclusive Development Aid & Post-Conflict Reconstruction
Official development aid has plummeted to a previously unimaginable low. Now, the most marginalized are asked to do so much more, for so much less. Given the current political context, it is unlikely Global North countries will increase their ODA anytime soon.
In this drastic context, disability-inclusive development aid stands as an innovative tool to deliver improved health, education, and employment outcomes to the most marginalized. Disability-inclusive development requires, by design, human-centred development that supports local populations of all abilities in designing the services and programs they deem most essential. When we design with disability in mind, we deliver for all ages, abilities, and backgrounds.
The 2025 Global Disability Summit’s Amman-Berlin Declaration recognizes the transformative power of disability-inclusive development, and calls on donor countries to commit 15% of ODA to disability-specific programming.
The United Kingdom has signed on. Canada has not.
A Particularly Uncheery IDPD Post
This may seem like a particularly uncheery IDPD post. But I believe that IDPD is about so much more than including disabled people and recognizing our accomplishments.
I believe that IDPD is an incredible opportunity to acknowledge the disability community’s historic fight for recognition and justice, and to honour it by ensuring that disability rights and disabled people are meaningfully included in all aspects of our lives.
Disability rights, and all human rights, are not “nice to have.” They did not emerge because they are “the right thing to do.”
Disability rights emerged as we tackled the systemic killing of disabled populations in Nazi Germany, the institutionalization of those labelled with intellectual disabilities, the disproportionate rates of casualties and fatalities in humanitarian disasters and conflicts.
Disability rights emerged and envisioned a better future for all. One where work is always voluntary and meaningful. Where healthcare is always appropriate and responsive. Where education is for everyone, and everyone has the right to live with dignity, autonomy, and respect.
On this IDPD (or, more likely, the days after it), I ask you all to go beyond surface-level acknowledgements that we exist.
Beyond glossy stock photos of a person in a wheelchair that you have never met going up a ramp. Beyond the aspects of disability you find comfortable, or positive, or marketable.
Because disability is so much more than that.
Disability is, quite literally, everything.
Honour our agency, our autonomy, our fight for progress by pledging to fight alongside us.
We are all aware of disability. We are all only going to become more aware of disability. So move beyond awareness, and towards solidarity.
Challenge yourself to think of disability beyond the usual realms of employment and education – to include disability in the important conversations you may deem too “intense” or “irrelevant” for us.
And yes, that includes defence, diplomacy, and development. That includes economic security and trade negotiations. It includes everything you can imagine, and then, probably, a whole lot more.
Nothing About Us Without Us. Nothing Without Us.
Thanks for reading and letting me try something new <3
In the limited light of a Friday November afternoon, I brace myself for the herculean task of making soup.
In the one hundred square feet of my studio sanctuary, soft jazz fills the silence. It’s not that I mind silence – I find myself craving it more and more these days – of all things, because I heard cows love it. Or, something about their nervous system loves it.
I set out the ingredients precariously – chicken broth and pasta stacked on top of my toaster. I found a rubber band in the toaster last week, ever so slightly smoking as it burned further into the metal grid.
I said I wouldn’t stack things on top of the toaster after that, but I do. It’s too convenient not to. Or at least, it’s convenient for now.
The dutch oven carries so much weight, and I nearly take out a few ramekins wrestling it out from the back of the top of the fridge. With a thud, it lands on the stovetop burners I’ve been meaning to clean for months now.
Maybe next week.
I look at the mirepoix-to-be: carrots still going strong after a few days of fridgeratory isolation, celery on its last limbs and just passable to be cooked down and hidden in something larger. The onion, however, is brand new – hand selected from the masses at the grocery store last night coming home from school.
The onions will have to go in first, so I grab my dull kitchen knife and set to work. Some days I try to ignore the arthritis entirely, and other days it makes sure it is impossible to ignore.
Proper knife technique is abandoned on the precipice of just getting things done. My whole upper body goes into halving the onion through the root, while shaky hands cautiously make horizontal incisions.
I think back to two years ago, when I had to cut off all my nails to avoid scratching myself up when I struggled to navigate the increasingly blurry divide between reality and nightmare. The scars I have on my hands were never consciously done by my own hands, but remain visible all the same.
But now, I chop away – knife as comfortably as it’s going to be in hand. There is no more danger, no nightmares last night, only soft jazz and soon to be soup.
The carrots are next, which consistently pose more of a challenge than the onions. Which is odd, because I always thought onions would be the hardest to get through.
Onions, with their roots and layers and hard skin and soft skin. It turns out once you get to know it better, it was never difficult at all. It was the way you approached it.
Carrots used to feel easier. Peel away, chop off the head and tail, and cut it up. I don’t know if I’m growing weaker or these carrots are growing stronger, but my hands ache with exhaustion when I’m done.
The carrots follow the onions into the pot. Onions get a head start, which I soon realize is nonsensical. The heat and time wear the onion down and change its colour, but the carrots in all their stubbornness visibly remain the same. The carrots also seem to need twice as much time in the pot to soften, while the onions carry the burden of marginal overcooking.
Next is the celery, and I can’t tell if I’m happy to put it to use on its last legs of life or if it feels like an unfair fight after the carrots. It’s soft, and straightforward, and too easy to cut through.
I’m so worried that I’ll become too soft and get cut right up and put into some soup that gets forgotten in a fridge and left to grow mold and die.
But I can’t stay a carrot forever. I don’t want to be a carrot. Impossible to cut through, requiring way too much time to soften, never changing shape, barely changing flavour.
The crackling breaks me out of my weird, melancholic, vegetable thinking. Which is for the best, because I don’t want to personify the vegetables I will be eating later.
I’m not afraid of eating anymore.
This dutch oven has a habit of overheating. The vegetables crisp up, the handles grow hot, and I routinely pick up the lid’s handle only to remember that yes, it is still hot.
Why did I think it wouldn’t be hot this time?
I pour in a little extra olive oil and some pre-mined garlic. I’ll say I use it because some chef somewhere said it’s better for flavour – but I know it’s because my hands are tired.
I don’t know why I’m so afraid to admit that I’m so tired.
I stir it all together, lifting vegetables at the bottom to the top. Everything is supposed to cook evenly, to get its turn cooking at the bottom or steaming at the top.
I pour in the chicken broth from the toaster coaster, as I have just decided to call it, and put the pot lid – less hot this time, though I forgot to check before touching it – back on and let it simmer.
Almost forgot – I’m supposed to throw in a parmesan rind at this point for “flavour.”
Between us, this initially sounded like some rich people shit. Parmesan is supposed to be the flaky little white stuff coming out of the shaker with an expiration date years past on it. It should not have rinds.
So, I was pretty taken aback when just the discards of rich people cheese actually changed the flavour.
What else didn’t I know growing up? What am I going to learn next? Are they going to find out I didn’t grow up like them? What’s going to give me away next time?
I restlessly get up off the couch and check in on my simmering soup early.
Simmering is an understatement – I forgot to take the lid off. I go back to that pot lid (the same one that is always hot, if you’re following along) – nope. I go back, grab a towel, and try again.
Everything is fine. A little extra heat never hurt anyone.
I begin my hunt for this famous parmesan rind. Sorting through the mess of carrots, onion, and celery, I manage to weed it out. Sure enough, it looks boiled – little holes emerge, and I prod the new texture.
Freaky little thing.
I take my handheld mixer (another kitchen secret these rich people have been holding on to) and indiscriminately blend everything together.
The onion, no longer so hard to get through now that I know it better.
The celery, which ended up just as soft as all the others.
And the carrots, who in all their stubbornness must get the final say on the colour of my soup.
Oh, and the garlic. A low maintenance, last minute throw-in that brings it all together.
Who is the garlic in my life? Who am I failing to appreciate and recognize in the moment? I am so scared I won’t realize how much someone means to me until they’re dead – again.
Everything blends together, and I now set it to boil on purpose. The recipe calls for pastina, but I’m convinced it’s some sort of italian way of messing with the rest us since I can never actually find it. The next smallest pasta I can find – ditali – will have to do.
With ten minutes of stirring ahead of me, I pull out and check my phone. Nothing.
It’s been like that for the last two years.
Sometimes I regret telling people about what happened. I don’t know if it’s because they don’t know what to say, or if they pity me, or if they think I’m being dramatic.
But I do know that if I didn’t tell people what happened, if I chose to suffer in silence, I would probably be dead right now.
It feels like there’s this unspoken expectation that I’m supposed to be fine now. Hell, that expectation started 3 months after it happened.
I think that’s when everyone realized I wasn’t going to get better anytime soon. And that was when the texts stopped.
Well, it still beats the alternative.
I get to work dismantling the rotisserie chicken, whose joints are just about as stiff as mine. There’s something meditative about systematically taking the chicken apart, making sure all the meat is put to good use.
There’s the usual line of thinking about how I weigh the chicken’s life below mine, now complimented by my recent realization I technically have hamster ovary cells inside of me and always will.
I think my brain has sectioned off the memories of being on all the hardcore arthritis drugs.
Microdosing chemotherapy throughout high school, steroids that made my face puff up and mouth taste funny for months afterwards, and the hamster-based biologics that altered how my immune system functions.
Still shaky and always freezing hands wrapped around the needle, clawing for any fat left around my stomach. The doctor threatened to take me off the meds if I didn’t gain weight. The needle goes in, but the initial adrenaline rush had run out months ago. Another Sunday injection, with side effects masked as Monday blues.
Yeah, I can’t blame my brain for suppressing that.
With the pasta cooked in the broth, I slide the chopped up chicken in and let it simmer (no lid this time).
I already know this batch will be better.
The first time I loaded in too much chicken and pasta, trying to maximize nutrients and diversify food groups and ultimately making some sort of slop. Good, hearty, nutritious slop – but still slop.
I’m not in a scarcity mindset anymore – I don’t have to be. Soup is just soup now, and I know there will be more later.
I sit down on the couch, frustrated that my body is so tired from something as simple as making soup. It’s a Friday afternoon, I should be gearing up for the weekend.
But with the rain, I told everyone I would be studying. And I will be. But I also won’t have it in me to do anything else.
I don’t know why I’m afraid to tell people I’m in pain.
I think people know that I’m in pain anyways.
Whether they know or not, I worry they can sense that there is something wrong with me. That I have a lot of baggage. That I’m not being fully honest. That I’m hiding something.
And I think that’s really taken a toll on everyone.
I know that I need to open up and be honest to actually connect with people. I know that I’m the problem here.
But I know what happened when I did tell people. And I’m so sick of it.
The pitiful looks, the self-censorship, the way people look at each other in a group when I say something “concerning.”
Or worse, when they finally get the answers they wanted so bad and decide it’s too much. Too much to believe, too much to handle, too much to care.
It’s a trauma dumping catch-22 that I have no intention of participating in.
The smell of the soup settling on the stovetop begins to compete with the rain hitting the cement outside. I hope all of my Novembers smell like this.
The truth is that I am a happy person. Or at least, I think I’m a happy person. I love being alive and I love making soup – even when it hurts.
I think the real issue is finding balance. I feel like an unwilling ping pong ball at times, bouncing between perfect days surrounded by good friends and never ending nights where I am haunted by everything I try to forget.
But then there’s other times, like making soup, where I feel everything all at once.
When I find peace and purpose in chopping carrots, but feel the pang of frustration synced with the pain in my hands.
When I settle into a quiet flow under soft jazz, but remember I had to research what kinds of music could help me manage my nervous system when it was convinced I was dying.
When I remember I am in my beloved apartment that is full of so many happy memories hosting friends, but flash back to how I curled up in a ball on the same floor when the nightmares became too much.
There is so much pressure to forgive and forget and let go of the past. There is so much pressure to overcome my disability and just act “normal.” And there is so much pressure to be everything to everyone while doing everything right all of the time.
And I think that’s all bullshit.
Nothing about my trauma prevents me from experiencing joy now – but joy doesn’t make it go away.
Nothing about my arthritis is going to stop me from doing what I love – but I could never love something so much that I won’t feel pain.
Life is messy, and complicated, and never turns out the way you expect. And I think that’s part of what makes it so beautiful.
And soup is also messy and complicated – all you have to do is look at the state of my kitchen: a stray carrot peeling in the sink, broth splattered on the wall from the immersion blender, a stray piece of onion I’ll fish out from an unused burner later.
But that mess doesn’t mean there’s no soup.
There’s actually a lot of it.
So I’ll turn up the jazz, breathe in some cold November air through the mesh window, grate more of that rich people parmesan over a heaping bowl of freshly made soup, and dig in.
Albert Einstein allegedly said that “insanity is doing the same thing over and over again and expecting different results.”
Which is to say, I’m about to write a blog about how much K-12 and university education sucked as a disabled student just a few days before heading off to grad school.
Say what you will, no one is doing it quite like me.
By some miracle, spite, actual effort, or some combination of the three, I graduated from uOttawa summa cum laude (which is latin for big, big nerd) this Spring.
I’ve been told graduation is supposed to be this big celebration of your academic achievement or whatever, but that Spring I just kept telling myself “uOttawa can’t hurt me anymore.”
I’d like to think I was at least half-joking.
While uOttawa gave me a fairly hard time, it would be unfair to say that my issues, grievances, and general disenfranchisement with the education system started in 2020 as I started my freshman year.
No, they started 16 years ago on the first day of Grade 1, and they really haven’t let up since.
I’m writing this blog for a few reasons:
One: it’s been a bit since I wrote a blog and the guilt has been eating me alive, so this topic feels like an easy target.
Two: with undergrad behind me, I figured I should actually process my relationship to education before heading off to grad school in a few days. probably should have done it sooner, but we ball nonetheless.
Three: while my career has largely focused on disabled post-secondary students, K-12 plays a major role in shaping which disabled students actually make it to university – and not having the capacity to work on that issue continues to haunt me every day of my life.
Four: there are so many kids out there right now that, just like me, are struggling through school in silence while navigating undiagnosed and invisible disabilities.
Five: there has yet to be a reckoning for K-12 administrations that target, bully, and push out their disabled students. yet.
With that being said, let’s get into it.
Grade School: Unwell, Undiagnosed, Unimpressed
My Secret Speech Impediment
Unless you’ve talked to me drunk or in French (or god forbid, both), you probably don’t know I had a speech impediment.
Compound consonants like CH, TR, and SH (which, as you may know, are in a LOT of words) were a bit of a struggle for me. The CHs and TRs would get caught behind my nose and come out silently in an exhale, and I didn’t quite understand where to start to make my SHs not sound like SSs.
Naturally, this was a gold mine for bullying. They would ask me to say “beach”, and I would be confused why they were laughing in my face.
One of the best parts of growing up undiagnosed neurodivergent is that things like this went completely over my head.
Luckily, by some geographical miracle, I was at a rich person school. And rich person schools have resources. Before I knew it, I was being whisked away from class to meet with some nice lady to play word games, and without realizing, the speech impediment faded away.
With the speech impediment taken care of, I was able to generally exist as a normal student for the next few years. Yes, I was frequently thrown a textbook for the grade ahead and told to entertain myself during class. Yes, I was known to be very chatty and had to multitask at all times – but also a privilege to have in class. Yes, I could be a little problematic when I thought a rule was dumb or when I was overwhelmed by others making too much noise or not following rules.
But, you know, normal student.
Head Start/False Start on Mental Illness
And then, as it so often does, mental illness kicked in around Grade 5.
I like to joke that I got a head start on the whole depression and anxiety thing as most people aren’t diagnosed until high school, and I guess that’s true enough. But I also genuinely believe we are dismissing so many mentally ill youth as “going through puberty” in a way that sets them up for failure when they finally do get diagnosed.
Anyways, my head start with depression, anxiety, and an eating disorder would turn out to be a false start. It turns out, all of my symptoms would be explained 5 years later with the ADHD diagnosis we now all know and love.
But at that time, I just felt like I had too many problems to have even the slightest clue where to start.
So, I went with the obvious response when you don’t know what to do. Withdraw. I started missing a lot of class, and on days when I did bother to show up, I would often leave around lunch.
By the time I got to high school, my mom gave me access to her attendance app so I could sign myself in and out at will. But before that, I had to go through the secretaries. And they sure made sure I had to go through them.
I will never know what possesses certain kinds of people to work in school administration, but I do know these kinds of people love to berate and belittle children.
While I was clearly struggling, these secretaries decided to make fun of me to my face when I was at my lowest. I was 11.
I’ll tell you, it definitely did not encourage me to come back to school.
High School: Diagnoses (Sometimes) Make a Difference
C+ for Effort
By the time grade 9 rolled around, I knew my body wasn’t exactly in peak condition.
I would blame this on a past eating disorder, a lack of stamina from time spent in bed depressed, continued growing pains, and any other form of mental gymnastics I could think of at the time.
But all these mental gymnastics simply could not help me with gym class.
My attendance had not improved since grade 5, and wouldn’t for another few years – so I wasn’t exactly shocked to receive a mid-term gym grade of C+. However, my average was going to absolutely tank if the C+ stuck around.
So, I talked to my gym teacher. She said that if she only marked me based on the days I was actually in class, I would have an A.
On the days I managed to show up, I gave a great effort.
On the days I struggled through undiagnosed pain and mental illnesses to show up to school and get side comments on how I’m actually at gym today, I grit my teeth, pushed through the pain I couldn’t yet understand, and gave a class I cared nothing about everything I had.
And that was worth a C+.
While I did a written assignment and pulled an end-of-term B+, that moment sticks with me.
The teacher didn’t understand what I was going through, I didn’t understand what I was going through, but most importantly, the outdated graded attendance system didn’t care what I was going through. And it never will.
Oh, the Drama
Grade 11 Drama Class (taken in Grade 10 because my timetable was a nightmare) was a similar attendance-based issue. And let’s be fair, missing rehearsal without explanation did not exactly endear me to the teacher or my group members.
However, there’s a very clear line between consequences for your actions and teacher-sponsored bullying.
Now, this teacher was equally famous and infamous. Get on her good side, and you’re set. Get on her bad side, you might as well drop the class and then drop dead. In that order.
Things were looking particularly irredeemable for me until word got to this teacher that I had acquired a bright and shiny new diagnosis that suddenly made me tortured, interesting, and ultimately worthy of being a true artist: Juvenile Idiopathic Arthritis.
Oh yes, with this revered title my absences had instantly become their own performances. My knee brace became a strategically placed costume. My now perfectly understood pain worth inexhaustible sympathy became the object of the perfect character study.
What a complete and utter switch-up from the woman who encouraged other students to gang up on me.
I tolerated her the same way I tolerate plenty of people now. Focus on the good intentions, painfully smile at their pity, then metaphorically bash my head against the wall the second they turn their backs.
You can bring a horse to water, but you can’t make him drink.
You can explain your disability, but you can’t make them see you as equal.
There Was This Dog in Math Class
Sometimes when people ask me how I got diagnosed with ADHD and I’m not in the mood for some nuanced or wise or enlightening or earth-shaking revelation about being diagnosed as a woman, I just say “there was this dog in math class.” Which isn’t entirely not true.
While there had been some exceptionally clear signs of ADHD from a young age, schools really do not care until your grades are dropping or you’re disrupting class.
And I had already tried disrupting class – they just thought it was funny!
So, it was time for the second approach. I didn’t realize it at the time, but I was only good at school because it suited the way my brain functioned, and my brain only functioned that way because of the ADHD being socialized in a traditionally feminine way (aka do not create problems, figure it out yourself, never complain.)
This whole façade quickly dropped once Grade 10 math got to parabolas. (Which I have yet to use in real life.)
Now, I had study skills. I had perseverance. I was (I think) pretty smart.
But there was something about that god damn parabola that altered my brain forever. Or better yet, how I perceived my own brain.
My perfect little brain that went a thousand miles a minute and spit out any answer I wanted (more because of pattern recognition than actual intelligence) had become this evil malfunctioning machine that could not shortcut its way through understanding parabolas.
I hit a wall. A curved wall. Plotted on an x and y axis.
Now that my brain wasn’t being constantly fed easy content for analysis, it refused to focus on anything. Anything except a brown labrador that walked the block every day around 10am.
You really can’t blame me for focusing on the dog. Without it, I was now conscious of the viciously loud and constant noise of my own brain that had finally met its match.
I genuinely felt like I had officially gone crazy. That I was losing all my intelligence, and that all my future plans had gone up in smoke.
(Can you believe the last section was about drama?)
Naturally, I refused to accept any responsibility for myself and went straight to the doctor. Surely, if my brain was broken, it could be fixed.
To her credit, my family doctor was way ahead of the curve on destigmatizing ADHD. I walked in, said I was having issues paying attention, and absolutely aced the test she gave me.
Apparently, you are not supposed to ace that test.
I went straight on the same meds I’m still on today, which without counselling or awareness was effectively like throwing gas on a fire.
With more mental energy and focus, I was terrifying. Quick with a comeback, no tolerance for distractions, and deeply irritable when the outside world somehow drowned out my inside world.
I’d love to pretend I figured out this whole concerta-sponsored irritability nightmare fuel pretty quickly, but it took until the COVID lockdowns for me to make peace with my own mind.
But we aren’t quite there yet.
That One Time They Tried to Kick Me Out of High School
Even with the diagnoses, my attendance had not picked up.
This sounds deeply counter-intuitive, unless you’re familiar with the drugs used to treat arthritis. Microdosed chemotherapy, steroids, biologics that change the composition of your immune cells.
One day I’ll rank all the drugs I’ve done for one of our more fun blogs.
By the time Grade 11 came around, I was struggling. The meds made me incredibly nauseous and constantly fatigued, to the point where I felt more zombie than human.
Apparently zombies are still under the jurisdiction of the school’s attendance officer.
Despite somehow still being a straight A student at this time (largely due to my teachers going above and beyond to email me assignments, shout out Doc Wat), the Vice Principal called my mom and myself in for a meeting.
Having absolutely no clue what was about to happen, I walked in with an open mind. To me, the attendance officer was just there to scare us into going to school – like an academic boogeyman. They didn’t have any real power.
Apparently they did. Again, despite being a straight A student, I was explicitly told I could no longer remain in mainstream schooling.
Oh yeah. A straight A student was getting kicked out of high school.
Luckily, I had no clue what was going on. And when this happens, I ask what the options are.
In what would become a signature move, I quickly confused everyone in the room enough until I had exactly what I wanted: a customized Frankenstein education plan that would allow me to attend one morning class three times a week (conveniently coinciding with band practice, which I was holding on to for dear life), and meet with an itinerant teacher once a week at the public library.
I even managed to schedule the itinerant meeting right after the therapy dog session at our central branch.
While I thought it was going to be completely embarrassing to be known as a semi-drop out at school, it turns out no one even noticed my Frankenstein’s monster of an education. People saw me at band practice and in the halls first thing in the morning, and just assumed I was in different classes.
I was getting away with murder.
And, thanks to Itinerant education, I was able to finally apply myself to the self-taught lesson packets and fly through courses way faster than I had any right to – ultimately freeing up additional spares for my final year of high school, which I planned on attending full-time.
Magnum Opus
By some miracle, things were actually looking up my senior year of high school. We had 20/20 vision we would joke, as the upcoming 2020 seemed so clear…
I had speed ran countless arthritis treatments until finding a manageable balance of methotrexate (microdosed chemo) and Enbrel (a biologic that apparently has me banned from donating blood the rest of my life.) My ADHD meds were working. I was somehow, slowly, starting to feel better.
Was my attendance the first semester perfect? Absolutely not! This was still me we’re talking about. But it was better – and everyone noticed.
At this time, I was also taking the Grade 12 Creative Writing course. While I had enjoyed English classes way more than my peers, I had never really considered myself much of a writer. I really only took it because I needed a credit, it fit my schedule, and everyone’s favourite teacher taught the course.
Somehow, I actually started to like creative writing. With an ADHD brain that was becoming less nightmarish by the day, and that teacher openly sharing his own experience with ADHD, it became almost fun to apply my “new” brain to creative challenges.
Parabolas still weren’t my thing though.
The biggest creative challenge I faced was developing my own end-of-year independent project, which he called a Magnum Opus. While I initially rolled my eyes at the assignment and pretended not to care, something genuinely awakened inside of me.
My end-of-year project (which I still will not refer to as a Magnum Opus) was a poetry book called Body Betrayal – which paired poems on ADHD and arthritis with pantone colour swatches and a custom Spotify playlist.
Writing it was cathartic, and reflective, and challenging, and enriching, and allowed me to finally put years of silent struggle into words for the very first time.
And as you can tell, once I started to put my experience with disability into words I have never really been able to stop.
The Best Semester Ever and Nothing Will Go Wrong, Obviously
Now, the first half of Grade 12 was my best academic performance yet. But that was before I was finally old enough to receive treatment for my fibromyalgia.
The difference was instant and obvious. I had my brain back. I had my body back. I had my life back.
I went to school. First one day at a time, then a whole week.
While the other kids had stopped making fun of my attendance when they found out about the whole arthritis thing, they had now taken to cheering me on.
Then another week went by.
Still there.
Another.
I made it 40 days.
40 whole days without a single absence. An unimaginably low bar for some, and an unimaginably high bar for me.
Everyone wanted me in a group project, now that they knew I would show.
While my band director was initially apprehensive about me becoming section leader given my past absences, he went on to select competition pieces based around my section who were improving by the day.
And to think, just a year ago, they tried to kick me out of school.
And then – you know what’s next – we were about to have the longest March break in history. Three weeks of vacation, with no homework or tests or makeup classes!
March break ended up being a lot longer than three weeks…
University
I’ll keep this section short, since a lot of it has been documented already and I don’t want to beat the dead horse.
(Horse, GG, uOttawa? Give me some credit here folks.)
Also, like most of my blogs, this is getting pretty long.
Despite the pandemic, I moved to Ottawa in September 2020 to begin the first year of my undergraduate program in International Development, assuming class would be moved in-person in a few months and I would not have to brave an upended housing market at full demand.
While online school lasted longer than anyone imagined, it turned out to be the perfect set-up for me, personally speaking.
Chasing the interrupted academic high of the second semester of Grade Twelve, I was able to completely throw myself into my studies – without wasting time and energy on things like commuting and meal prepping.
I quickly learned that if I turn my camera off during Zoom lectures, I would quickly do anything but pay attention. So, I became the one person in every lecture with her camera on. Worse, I nodded to signal I was paying attention and to inconspicuously stim.
By my fifth year, I was still known as the girl who had her camera on.
Around halfway through second year, uOttawa began transitioning to hybrid courses – allowing students to choose between attending online or in-person.
Thriving under online classes but aware I was probably missing key psychological milestones, I was able to gently ease myself into the demanding lifestyle of university education and began to enjoy in-person classes.
That was, until there were only in-person classes.
Despite spending thousands of dollars on equipment and training staff on how to use hybrid equipment, it feels as though post-secondary education as a whole continues to have a hybrid amnesia.
I have documented the betrayal, and the rage, and the frustration I felt at this time. And I am very comfortable not revisiting it.
But one thing I haven’t explicitly visited is the disconnect I felt between reality and academia.
Despite studying international development (improving health, education, and employment outcomes for the most marginalized) and conflict (the most mass-disabling man-made event to date) – neither program adequately acknowledged disability, let alone meaningfully incorporated it.
While I was very lucky to have peers and profs encourage me to incorporate disability in assignments, class discussions, and group projects – I felt incredibly disenfranchised and disillusioned.
How could I possibly care about these studies that don’t care about me?
How can I consider this education worthwhile when there are such glaring knowledge gaps?
To make matters worse, I was working my dream job with the National Educational Association of Disabled Students. My day job was disability, my personal life was disability, I was disabled.
There was no escaping disability, unless you looked in any course syllabus.
Despite this, I convinced myself that a solid academic background in international development and human rights would help my career in disability. And it already has. But the whole time, I had to push through this overwhelming feeling that this program, this field, this career path I had my heart set on was just not meant for me. Not meant for people like me.
Reader, this is obviously melodramatic bullshit dredged up from some of my lower moments. This field is very much so for people like me, and everyone is about to get real disabled from conflict or climate change or communicable diseases anyways. Basically, I’m way ahead of the curve.
But that doesn’t erase how abandoned I felt. So, I lashed out the way any rational person would: I got way too into my job.
Professors, if you are reading this, I am so sorry. None of this was personal. But I was pretty much working non-stop during every lecture.
Was I paying attention? Yeah!
Was I taking notes? Absolutely!
Were many other students distracted because I was putting together a marketing plan or instagram advertisement on my laptop? Definitely.
This heavy dependence on multitasking to juggle a technically impossible workload would later result in burnout so bad I had to quit my job, but I’m gonna save that topic for a later date.
At this point, if you’re still reading because wow this is getting long, you might be asking “how was your attendance?”
To which I would answer, “bad, but for new reasons!”
In what can only be described as perfect irony, I was missing a lot of class to go to other universities and talk to disabled students about their experiences as part of my work for NEADS. And I mean a LOT of class.
I also got struck down by a fun new mystery disease in my final year, which turned out to be Hashimoto’s – an autoimmune thyroid disorder. Turns out autoimmune disorders are not like chicken pox…
Between this and an absolutely shot immune system from years of immunosuppressants, a particularly bad case of flu led me to miss 30% of classes – or $900 in tuition.
I feel sick writing that.
Of course, graded attendance was coming back to bite me in the ass too. As if nearly $1k in educational losses wasn’t enough.
Half of my classes that final semester had graded attendance, and I had a nerdy average to maintain. To this day, I have no clue how I pulled it off. Desperation, Dayquil, spite?
My thoughts and feelings on graded attendance remain the same, so I’ll just leave you with this conversation:
Prof: “You were an excellent student. I just wish you were at more classes, you always had something to contribute.”
Me: “[Prof], I wish I was at more classes too.”
Grad School: The Definition of Insanity
Returning to the alleged Einstein quote (which turns out is very contentious but there’s no way I’m changing the intro now), you’re probably baffled as to why I can write all of this about the state of education and all the many ways in which it has failed me – just to go to grad school in a few days.
How I can come back from that gym class C+, or missing 30% of my final term of undergrad.
How I can dive right back into an academia which ignores, excludes, and exploits disability.
Because those moments and others’ (in)actions don’t define me.
Because I genuinely love nerding out about economics, and governance, and human rights, and yes, disability.
Because I found a program that lets me finally embed accessibility and disability into my studies. With actual courses, not just DIY leg work.
Because I get to attend the most disabled university in Canada, if not the world.
And because education is supposed to be for everyone.
This Fall, I’ll be attending Carleton University for a Masters of Arts in Political Economy, with a specialization in Accessibility.
I’ll take classes on social policy, and universal design, and the politics of health care, and lots of other nerdy stuff!
I’ll TA classes on international development, and maybe be the representation I never had.
And for the first time in 8 years, I’m going to put school first.
I have effectively put my career in the disability non-profit sector on hold to either be the definition of insanity or to challenge it.
Which is terrifying, and nerve-wracking, and exhilarating.
Welcome to the final instalment of the Blogging to Berlin Series, where I attempt to cram as many blogs on Canadian disability rights and accessibility legislation as I can right up until my plane takes off for the Global Disability Summit.
While I was originally going to keep it to three blogs, Canada’s recent appearance before the UN Committee on the Rights of Persons with Disabilities in Geneva is simply too good to leave out. Unfortunately, the whole process is honestly super confusing and hard to summarize – but that’s what I’m here for!
So buckle up, because I’m going to do my very best to explain what Periodic Reporting is, summarize key reports to the Committee, share some highlights from the actual hearing, and suggest some practical next steps in anticipation of the upcoming Concluding Remarks.
Trigger Warning: Brief Mentions of Disability Rights Violations (Institutionalization, Sterilization, Detainment, Forced Treatment, Medical Assistance in Dying)
Ratification
Before we get into the Periodic Reporting process, we’ll need to start with understanding how ratification works. Stay with me.
When a country signs on to a UN Convention, they become a State Party – which means they accept certain obligations and responsibilities detailed in the Convention they just agreed to follow.
Once a country is a State Party, they must begin the ratification process: this means domestic actions that incorporate the international convention into a country’s law. This can be done in a few different ways.
Most effectively, States can ratify international law through a large, national bill like the United Nations Declaration on the Rights of Indigenous Peoples Act, which explicitly makes all articles of the international law legally binding in Canada!
More commonly, States will pursue a patchwork approach of reforming old, outdated laws and introducing programs and policies designed to gradually implement more of the Convention domestically. In Canada, we’ve seen initiatives such as the Disability Inclusion Action Plan and Canada Disability Benefit address parts of the Convention, with varying degrees of success.
Additionally, courts at all levels can choose to claim rights provided by international conventions, even if they haven’t explicitly been incorporated into domestic law yet. Once a court rules in favour and recognizes rights from an international convention, future rulings must take note of this and more often than not comply.
(For my international friends, Canada has TWO legal systems and I do not have it in me to get into it here.)
Periodic Review
Alright, let’s start with our key players.
As part of its obligations as a State Party, and to help with the ratification process, signatories to the UN Convention on the Rights of Persons with Disabilities (CRPD) must submit a report detailing their ratification progress to the Committee on the Rights of Persons with Disabilities and attend an in-person committee hearing in Geneva.
The Committee also considers reports from National Human Rights Institutions (NHRIs) and civil society organizations, both of which can also attend the committee hearing in Geneva.
Some countries, including Canada, will fund a coalition of civil society organizations to develop a “Parallel Report”. While funded by the government, they do not control or guide any of the content – which means that Parallel Reports are often more critical than the official government report!
Now that we know our key players, let’s attempt to break down the periodic review process:
After the previous Periodic Review, the Committee issues a number of Concluding Observations. These will highlight impressive areas of progress, note continued or new areas of concern, outright condemn certain government actions, and provide a number of highly relevant and useful suggestions for the State Party to work on implementing.
After a few years (COVID-19 messed up the scheduling), the Committee will inform the State Party its due for a Periodic Review, and share a List of Issues Prior to Reporting. This List covers all articles of the CRPD, and requests information from the State on what they’ve done to implement certain clauses.
Once the State Party has received notice and the LOIPR, they begin developing their Report to the Committee. The Report must answer every single issue or question raised by the Committee in the LOIPR with concrete examples and in-depth references.
National Human Rights Institutes (NHRIs) and Civil Society Organizations (CSOs) will also generally begin work developing their own reports to the Committee at this time – but much of the work for civil society occurs in response to the published State Party report.
With all reports finalized and submitted to the Committee, the government sends a delegation to Geneva for the hearing. This often includes high-level bureaucrats and provincial officials, with federal political officials’ participation greatly fluctuating.
During the hearing, the Committee questions Canada on its ratification progress – drawing from the government’s report, the NHRI report, and CSOs reports. The hearing is livestreamed, and the questions and responses are all summarized and published online.
Following the hearing, usually within 1-2 weeks, the Committee will issue their Concluding Observations – and State Parties are expected to get right to work implementing their suggestions!
Deep breath, we made it.
This whole process was INCREDIBLY confusing for me at first, but I hope this boils it down into a more approachable step-by-step explainer!
In summary, Periodic Reviews are when the CRPD Committee questions a country on how it is implementing the CRPD, and provides recommendations for future action.
NHRIs and CSOs are invited to the party to provide a critical perspective and supply additional information, but it’s mostly a dialogue between the country reviewed and the Committee.
Background Information That Is Important I Promise
Canada’s last Periodic Review was in Spring 2017 (the 2021 Review was postponed because of the pandemic, they didn’t ditch anything I promise!) – which means this Report worked with Concluding Observations from 2017!
In terms of key concerns, the Committee criticized Canada for continuing to uphold substitute decision-making, where non-disabled people speak for disabled people without their consent. Canada has been incredibly stubborn about reforming their guardianship laws in favour of supported decision-making, which is essentially just a more accessible and inclusive approach to how disabled people navigate the legal system.
The Committee also criticized Canada on a number of key issues: institutionalization, segregation of disabled children in school, the involuntary detention and treatment of psychosocially disabled people, and coerced and unwanted sterilization in medical settings.
The suggestions were fairly straightforward: remove outdated laws, develop monitoring mechanisms for MAiD and institutionalization, publish national policies on inclusive education and employment, and create a CRPD implementation monitoring body with full participation from civil society. Remember these suggestions, because you are definitely going to see them again, and again, and again.
Flash forward to 2019, when the Committee provides Canada with its List of Issues Prior to Reporting. There’s a lot of overlap with the Concluding Observations (suggesting slow progress towards ratification) – so I’ll focus here on more in-depth or new points raised.
By 2019, the Committee had really embraced an intersectional approach to ratification, and paid particular attention to children, women, migrants, asylum seekers, indigenous persons, and 2SLGBTQIA+ persons with disabilities.
Additionally, the Committee had generally been pushing all States to pay more attention to persons with intellectual and/or developmental disabilities, and autistic people – noting they were often excluded from disability rights-based programs.
There was also a clear emphasis on the need for quality, timely, disaggregated data on disability – which generally means recent, relevant, appropriate, accessible data that examines how different groups of disabled people are impacted by issues differently.
In Canada, our survey on disability occurs every 5 years, and largely focuses on employment, education, income, and housing for persons with disabilities ages 15 and up. And while it occurs every 5 years, the general public is still working with the 2017 Survey, as more recent ones are behind what I am told is a SEVENTY THOUSAND DOLLAR PAYWALL.
Do you have seventy thousand dollars? I don’t!
(If you do hit me up though…)
The Reports!
I know what you’re thinking – “how are we STILL not at the hearing?” But you’re reading this. Imagine writing this. My whole day is cleared.
I will say this, though: the Reports are where the majority of the work and content is. These are lengthy, nerdy, in-depth reports with tons of data and references and sources. They are also incredible resources to inform your own advocacy work, projects, and briefings – if you have it in you to trudge through them.
If you don’t though, you’re in the right place! Hopefully.
While any civil society organization can submit a report to the Committee for their consideration, I’ll focus on Canada’s report, the Canadian Human Rights Commission’s (CHRC) Report, and the civil society working group Parallel Report.
I’ll also be opting more for a vibe check than a comprehensive breakdown, because if I even attempt to do that, I will have a comprehensive breakdown.
Canada’s Report, as required, responds to the Committee’s List of Issues Prior to Reporting with all the work they’re doing to implement the CRPD.
However, in true Canadian fashion, some believe the Report glossed over key issues and chose to emphasize the more positive aspects of ratification, instead of explicitly noting where there is significant room for improvement.
As Canada uses a identify, remove, prevent approach to remove accessibility barriers at the federal level, this lack of identification is frustrating.
Further, the majority of examples of implementation were from the provinces. Now, this makes sense to a certain degree: provinces in Canada are responsible for key areas like education, employment, and disability income supports.
However, there was a clear emphasis on provincial actions that prevented a better evaluation of federal initiatives. This can also be seen by some as the federal government pushing responsibility for CRPD implementation onto the provinces.
While I could go into all the federal initiatives underway (but won’t), I do want to note that some of the initiatives mentioned as CRPD ratification did not explicitly include disability, but emphasized intersectionality.
Here’s why this is different, and why it’s important.
While disability is an identity factor and a marginalized group part of intersectionality like all other equity-denied groups – disability is the only group requiring modifications to the built environment, processes, and procedures.
These modifications often require additional financing and organizational flexibility, and disability-specific needs are rarely addressed by a “regardless of” approach.
It’s great that I’m entitled to services regardless of my disability. But it’s a completely different thing to be able to access services that accommodate my disability.
I’ll leave it there for the Canada Report, but I would encourage you to read it if you have the time and capacity to see what areas the federal government is prioritizing, and what programs it chose to highlight.
Canadian Human Rights Commission’s Report (Read Here)
My initial impression of the CHRC Team was already very positive – they’re incredibly personable, responsive, and cooperative, and I wouldn’t say it’s a stretch to claim that they’re well respected by civil society.
But this positive impression went absolutely through the roof when I read their report.
Now, I want to make this clear: the Commission is small. And underfunded. And tasked with monitoring CRPD implementation without the capacity to effectively to do so.
So while their overall monitoring of CRPD implementation is obviously not where we want to be (and I don’t think they want to be there either!), this report goes HARD.
Three things stand out to me:
how the Commission is able to be critical in a constructive way
how they reference specific events and reports for increased accountability
and just how well formatted and communicated their findings were
Hear me out on that last point: you can be doing the best work in the world, but it doesn’t help anyone if you aren’t communicating it.
If you read any document referenced in this blog, read the Commission’s report.
The Commission hits the usual suspects: employment, education, decision-making, community living, income, and so on.
But they also highlight some interesting areas: how disabled people disproportionately experience homelessness, how systemic discrimination creates a higher unemployment rate, how the climate crisis disproportionately impacts disabled people, and how PWD are over-represented in prisons.
The Commission also included its own recommendations for Canada’s ratification throughout the Report, so here are a few of my personal favourites:
Canada must address systemic barriers to accessible education, including a more comprehensive approach to accommodations and learning supports, and coordination to end the use of seclusion and restraint.
Canada must improve timely access to appropriate and effective mental health and addiction care in a holistic way, including through poverty, housing, and food insecurity relief.
Canada must ensure services for Indigenous people with disabilities are equitable, adequate, and culturally appropriate – based on their distinct culture and identity and provided within their communities.
I also just love how they call out Canada’s patchwork approach to CRPD ratification, and call for a foundational structure for monitoring and implementation with full participation of civil society.
Canada loves to say it punches above its weight in international affairs. I will now be co-opting this to say that the Canadian Human Rights Commission is the real one punching above its weight.
As I previously explained, the government funded a handful of organizations to create a working group of civil society organizations tasked with developing this Parallel Report.
Our internal process consisted of sub-working groups for each Article, feedback from all working group members, further edits, and final submission to the working group secretariat.
I am so grateful to have had the opportunity to lead our sub-working groups on Article 8 (Awareness-Raising) and Article 21 (Access to Information) – and more importantly, so grateful that my colleagues had enough faith in me to let a then-21 year old lead this work!
(Yeah, it was a long process.)
Process aside, I want to highlight the extensive use of footnotes to elaborate on ideas, link to concrete actions, and cite references. If you check it out yourself, you’re gonna see it’s like 60% footnotes.
Why? Because civil society submissions have a limited word-count – but the word count does not include footnotes.
(We had a field day, what can I say.)
Fortunately for me, the Report summarizes its key themes itself:
increased funding and individualized services enabling independent living in dignity
developing an effective CRPD-specific ratification monitoring mechanism with civil society
and the need to abolish harmful and outdated laws such as institutionalization, forced treatment, and Track Two MAiD (solely on the basis of disability, not foreseeable death)
The Report also offers its own recommendations for further implementation:
Enact a comprehensive national action plan to implement the CRPD in coordination with PT governments and disabled persons organizations, including legislative reform and increased investments in disability services.
Ensure youth with disabilities are engaged, and that their feedback is reflected in the development, implementation, and monitoring of the laws, policies, programs, and services concerning them. (I didn’t even write this one!)
Repeal Track Two MAiD, and investigate and fully address the root causes and systemic inequality driving PWD to seek MAiD.
Abolish all legislation violating and denying the decision-making rights and legal capacity of persons with disabilities, in favour of a well-resourced framework facilitated supported decision-making.
Replace discriminatory legislation, policies, and practices facilitating detention, discipline, and coercive and involuntary treatment based on impairment or disability in favour of a human rights-based approach that prioritizes self-determination.
The Actual Review
Alright, home stretch. We made it through the reports. We are finally at the CRPD Committee hearing.
If you’ve made it this far, congratulations.
Delegation
In my opinion, you can tell a lot about a country’s priorities based on who they send to different conferences, negotiations, and reviews.
This year, Canada’s delegation was headed by Elisha Ram from Employment and Social Development Canada (who is absolutely lovely to work with by the way), and included representatives from a handful of federal government departments – Indigenous Services, Refugees and Citizenship, Statistics, Global Affairs, Heritage, and Justice.
3 of 10 provinces (Manitoba, Saskatchewan, and Québec) also sent representatives – which is odd, when you consider 8 of 10 provinces have accessibility legislation.
Notably, there were no federal-level political officials. Quite honestly, I’m not the most knowledgeable about this whole prorogation thing, but I’m pretty sure Ministers could still attend events and reviews in their official capacity.
However, with the government’s political party leadership race and an upcoming federal election, I’m not shocked they chose to emphasize domestic priorities.
(Learning about electoral incentives has permanently altered how I approach advocacy work. Someone please remind me to write a blog on that one day.)
That being said, Canadian civil society made the trip – with representatives from Arch Disability Law, Inclusion Canada, the Canadian Council on Rehabilitation and Work, the National Network for Mental Health, the ASÉ Foundation for Black Canadians with Disabilities, and so on.
And this was despite the Zero Project occurring about two weeks earlier in Austria, and the annual UN Conference on the Status of Women in New York occurring at the same time!
Proceedings
While the proceedings occurred through two 3-hour sessions, they are surprisingly hard to summarize.
I first want to highlight how iconic the CRPD Committee is, quite honestly. Markus Schefer and Rosemary Kayess in particular did not hold back – and weren’t afraid to call Canada out for resorting to prepared statements and not constructively engaging in dialogue (which they did, more than once!)
Of course, Canada’s nominee to the CRPD Committee, the incomparable Dr Laverne Jacobs, was excused from this hearing. Which means I’ll have to watch another committee hearing to watch her in action – from her tweets alone, I hear she also isn’t afraid of asking the hard questions.
Going back to the governmental delegation, the reliance on prepared statements was frustratingly felt throughout the proceedings. While some statements were relevant, well-delivered, and informative (shoutout Catherine Ivkoff’s points on climate change and gender-based violence) – there was this very odd disconnect that I believe really limited how relevant, and even transformative, these hearings can be.
The usual suspects were again brought up: education, employment, MAiD, disability poverty, data collection, and decision-making. However, there were also less expected discussions on the role Canada plays in weapons exportation and mass disabling armed conflict, the decision not to appeal the Québec MAiD ruling to the Supreme Court, and how Canada’s immigration system continues to discriminate on the basis of disability.
One moment that particularly caught my attention was when, after Canada shrugged off a number of questions on the basis of federalism, multiple committee members from federalist countries called them out.
This process is really important and serious, of course – but hear me out: a courtroom-like drama about CRPD Committee hearings. We just need a little editing, because the drama was there. I felt like I was watching RuPaul’s Drag Race with some of the (well-delivered and serious, of course) clap backs.
Again, very serious process. However, we could call it awareness-raising.
Back to the actual hearing, I don’t really have any insightful takeaways here. While the Committee asked some great questions, there was a lot of overlap from the LOIPR and 2017 Concluding Observations. Not their fault, of course, but it shows how slow implementation progress can stall more innovative action and prevent timely responses to emerging issues.
What’s Next?
So glad you asked.
We’re now waiting for the CPRD Committee to issue their 2025 Concluding Observations – which provides a fantastic resource to government in guiding future policies and initiatives, and an even better resource to civil society in their advocacy work.
However, again because of slow implementation, I’m honestly not expecting anything too exciting. What needs to be said has been said, several times, in many different formats.
These Periodic Reviews are very much what the country makes of it: if they commit to authentic and honest dialogue and focused implementation strategy, they’re going to get more niche questions and illuminating insights.
If a country treats these PRs like PR (public relations), relies on prepared statements, and shrugs off important questions – it’s going to get very repetitive, very fast.
Now, obviously, I am all in favour of Periodic Reviews. Even if they get repetitive, it provides a wealth of documented evidence on government action or inaction – and can help chart the rise and fall of government attitudes and priorities towards disability.
Looking at the CRPD Committee’s line of questioning and recommendations already published from the CHRC and CSO reports, it wouldn’t be unreasonable to expect Concluding Observations around a monitoring and enforcement mechanism, a national implementation framework, a shift towards supported decision-making, appealing Track Two MAiD, an inclusive education strategy, and a deinstitutionalization framework.
(Note to self: create Concluding Observations Prediction Bingo Card.)
But that’s what should be done. Based on the current state of Canadian politics, here are my suggestions on what could, more feasibly, be done.
With the recent abolishment of the Ministry of Persons with Disabilities, the Disability Advisory Group is now without a home and may potentially cease to exist. Further, with no Minister dedicated to disability, more ministers may be expected to incorporate disability into their own mandates.
I see this going one of four ways:
one ministerial advisory group shared between several ministers
a handful of smaller and more specific ministerial advisory groups
re-introducing the Standing Committee on the Rights of Persons with Disabilities from the 90s
abandoning a consistent and predictable approach in favour of one-on-ones and ad-hoc consultation processes
While the Committee, CHRC, and civil society have all repeatedly called for a CRPD-specific implementation body, the government appears quite insistent that the Federal-Provincial-Territorial Human Rights Forum is adequate. (I have been, and it is not.)
With this continued refusal to support a federal body, here are a few alternatives:
civil society can attempt to build a working group monitoring CRPD implementation among themselves, though this is particularly challenging with uncertainty around non-profit funding in this economy
the Canadian Human Rights Commission – if granted additional funding past their initial 5-year package (taking a moment to reflect on how wack it is they have to apply for additional funding for such a critical mandate) – could host quarterly roundtables with civil society organizations to at the very least discuss CRPD implementation
the FPT forum can host ad-hoc roundtables specifically on the CRPD, and make an increased effort to invite Disabled Persons Organizations
In terms of the legal need to repeal certain laws, such as substitute decision-making and psychiatric holds (involuntary detention of the psychosocially disabled), this again can go a number of ways:
without adequate public and electoral pressure, the government will not act on recommendations to appeal laws violating the CRPD
with enough pressure, the government could pursue parliamentary reviews of these laws with some consultation of civil society
with enough funding and capacity (which is already so strained), disability organizations could pursue Charter Challenges against these outdated laws
Carly Commentary
And there you have it, the final feature of our Blogging to Berlin Series.
I won’t lie, this was way too much fun.
The Series was a result of a policy brief I developed for both participants at the Global Disability Summit wanting to learn more about Canada’s disability rights and accessibility legislation, and myself to ensure I could speak to Canada’s disability rights landscape from a more informed perspective.
But it then became something much more than that.
Policy, programs, and legislation at any level impact our lives. Yet for so many of us, we find the whole legislative process too difficult to follow and contribute to. And for disabled people, we often aren’t even consulted in the decisions that impact us.
When I started work at NEADS (love you guys), I had the very unique privilege of getting to dive into disability rights and legislation as part of my paid employment. And from this opportunity, I was increasingly able to leverage policies and legislation to support our advocacy work. Now, I get to use it to share where Canada is at with delegates from around the world!
Call me a nerd all you want, but learning about provincial, federal, and international law gave me the confidence I need to better represent myself and my community. While they may just be words on a page to some, to me, they represent undeniable claims to fundamental rights and freedoms.
But it’s bigger than just policy: accessible education and awareness is empowering. And all too often, it’s hidden behind paywalls, or embedded in way too wordy documents (if you thought this blog was bad, check out some of the raw legislation), or just not properly advertised.
Canada, as part of its CRPD obligations, has a responsibility to educate the public on disability rights and share information in an accessible way. In my opinion, this is the most important step to ratification.
When we know our rights, we can claim them. When we know what is possible, we can achieve it.
So thank you for making your way through the Blogging to Berlin series, and bearing with me as I balance the more nerdy advocacy work with the fun stuff!
You can definitely expect a more personable post-Berlin update summarizing how the conference went, and some (hopefully!) fun and informative blogs as I try something new and take a few months off of work this Summer to spend time with family and prepare for grad school.
Despite the continued roll-out of enforcement measures under the Accessible Canada Act, the enactment of accessibility standards through Accessibility Standards Canada, the continuation of the Disability Inclusion Action Plan, and the landmark passing of legislation allowing for further development of the Canadian Disability Benefit, disability is only mentioned four times in the 2023 Fall Economic Statement and seven times in the accompanying Annexes. Of these mentions, disability is only directly discussed twice: in relation to childcare and the need for barrier-free housing – with no accompanying commitments or specific funding.
In the main statement, disability is only specifically discussed once in a brief add-on to the discussion of child care agreements with the provinces and territories, identifying a commitment to develop and fund an inclusion plan to support children with disabilities. Of the other three mentions, one is in a list of marginalized groups benefitting from more affordable housing, one is in relation to Veterans’ benefits, and one is concerning potential additional funding for students with a disability – albeit, alongside any dependents they might have.
While disability is mentioned more frequently in the Annexes, there is again little specific consideration to the disability community’s unique needs, barriers, and disproportionate financial burdens. In Annex 1: Details of Economic and Fiscal Projections, disability is mentioned twice to clarify its inclusion in aggregate measures such as the Child Disability Benefit and “Pensions and other accounts.” While in Annex 4: Statement on Gender, Diversity, and Inclusion, disability is mentioned 5 additional times, with 4 of these mentions being lists of marginalized groups and/or intersecting identity factors. Two mentions worth noting are the brief consideration of persons with disabilities’ need for barrier-free housing, and the inclusion of Indigenous persons with disabilities amongst other intersecting identity factors experienced by Indigenous persons.
With projections lasting into 2028-2029 and funding being promised for 2025-2026, the future of critical measures such as the Canadian Disability Benefit are deeply uncertain.
At A Glance
Statement Mentions
Mention #1: Building More Affordable Housing
Disability is not specifically considered in this section, and is only briefly mentioned amongst a list of other marginalized groups benefitting from affordable housing investments. (22)
Mention #2: Supporting A Strong Middle Class
Disability is only mentioned in relation to Veterans’ Benefits being indexed to inflation to help Canadians keep up with the cost of living. (33)
Mention #3: Federal Investments to Support Canadians With the Cost of Living
In a number of hypothetical examples designed to show how federal benefits aim to make life more affordable for Canadians, disability is briefly mentioned in the case of a low-income student in Nova Scotia, where they could receive additional funding for specialized student grants and equipment if they have a disability. (34)
Mention #4: Delivering Affordable, High-Quality Early Learning and Child Care
The first explicit mention of disability is in only one brief sentence in the supplementary discussion around receiving affordable, high-quality early learning and child care: “Agreements with provinces and territories also include a commitment to develop and fund an inclusion plan to support children with disabilities.” (34)
Annex Mentions
Mention A1: The Child Disability Benefit is included as a footnote in Annex 1’s Table A1.6: The Expense Outlook to clarify its inclusion in the Canada Child Benefit. (82)
Mention A2: In Annex 1’s Table A1.7: The Budgetary Balance, Non-Budgetary Transactions, and Financial Source/Requirement, the discussion of the “Pensions and other accounts” line includes disability benefits alongside other benefits such as health care, dental plans, and veterans’ benefits. (87).
Mention A3: In the opening section of Annex 4’s Statement on Gender Diversity and Inclusion, disability is included alongside other groups disproportionately impacted by the higher cost of living. (107)
Mention A4: Under Annex 4’s subsection on Canada’s Housing Action Plan, disability is more meaningfully considered alongside seniors, those on fixed incomes, and women escaping intimate-partner violence. This discussion has the most in-depth discussion of disabled people’s unique needs: “Persons with disabilities also face unique challenges: according to the 2017 Canadian Survey on Disability, 15.9 per cent of persons with disabilities were living in households in core housing need.” (107)
Mention A5: Continued in Annex 4’s subsection on Canada’s Housing Action Plan, disability is listed amongst other intersecting factors experienced by Indigenous persons who will benefit from the Urban, Rural, and Northern Indigenous Housing Strategy. (109)
Mention A6: Again found in Annex 4’s subsection on Canada’s Housing Action Plan, persons with disabilities are included amongst groups benefitting from the Apprenticeship Service and the Union Training and Innovation Program’s promotion of inclusion and accessibility. (109)
Mention A7: The final mention of disability is in a list of low-income and vulnerable populations who would benefit from cracking down on junk fees. (110).
Breaking It Down
Chapter 1: Building more affordable housing
“Affordable and community housing play critical roles by providing the most vulnerable Canadians with a place to call home. People experiencing or at risk of homelessness, women and children fleeing violence, seniors, Black and racialized people, Indigenous people, and persons with disabilities, are among those who benefit the most from affordable housing investments. The federal government has been taking action to make investments that build and repair these types of homes.” (22)
The Affordable Housing Fund will repair/renew 129,000 homes and build 31,500 more. $1 Billion has been committed over three years starting in 2025-2026 to support non-profit, co-op, and public housing providers to build over 7,000 homes by 2028.
However, there is no mention about accessible housing – only making the programs themselves more accessible, “with faster approvals and other improvements to meet the needs of vulnerable populations.”
Chapter 2: Supporting a Strong Middle Class
Despite opening the section with language around strengthening social safety nets and building economies where everyone has a real and fair chance for success and listing a number of social security programs, there is no mention of the Canadian Disability Benefit.
The only mention of disability is in the brief discussion of Veteran’s benefits: “Veterans’ benefits, such as the Disability Pension and the Pain and Suffering Compensation, are also indexed to inflation.” (33)
Disability is mentioned in a hypothetical scenario designed to share available support programs: “A low-income student in Nova Scotia could receive more than $5,800 in additional support in 2023 thanks to increased Canada Student Grants and interest-free Canada Student Loans, the Grocery Rebate, and pollution price rebates. If they have a disability or dependants, they could receive an additional $12,800 in specialized student grants, plus an extra $640 per dependant, and up to $20,000 towards devices that support their learning.” (34)
Disability is again briefly mentioned in the discussion of affordable, high-quality early learning and child care: “Agreements with provinces and territories also include a commitment to develop and fund an inclusion plan to support children with disabilities.” (34)
Annex 1: Outlook for Expenses
Disability is briefly mentioned in a footnote to table A1.6: The Expense Outlook – covering projections in billions of dollars between 2022-2023 and 2028-2029.
In the following section, Major Transfers to Persons, the Canadian Disability Benefit is nowhere to be found among major transfers such as Employment Insurance (EI), the Canada Child Benefit, and Old Age Security. (82)
Disability is once again mentioned in the discussion of Table A1.7: The Budgetary Balance, Non-Budgetary Transactions, and Financial Source/Requirement. This discussion merely explains what financial sources are included in the forecast horizon: “Pensions and other accounts include a variety of employee future benefit plans, such as health care and dental plans, disability, and other benefits for veterans and others, as well as the activities of the Government of Canada’s employee pension plans, and those of federally appointed judges and Members of Parliament.” (87)
Annex 2: Statement on Gender, Diversity, and Inclusion
Near the end of the statement, disability is lumped in with other marginalized groups – and given no unique consideration throughout the statement: “We know that Canadians are continuing to face real challenges with the higher cost of living, including in accessing affordable housing. Vulnerable Canadians—including seniors, persons with disabilities, 2SLGBTQI+, Indigenous, Black, and racialized people—face these challenges in disproportionate, unique ways.” (107)
Disability is more meaningfully mentioned in the Annex’s discussion of Canada’s Housing Action Plan: “Investing in housing is crucial to meeting the needs of all Canadians—but housing challenges are even more pressing for some. This includes seniors, who represent 17 per cent of those in unaffordable housing, many of whom are on fixed incomes; women escaping intimate-partner violence; and persons with disabilities, who may require barrier-free homes… Persons with disabilities also face unique challenges: according to the 2017 Canadian Survey on Disability, 15.9 per cent of persons with disabilities were living in households in core housing need.” (107)
In a breakdown of measures related to the Plan, Indigenous persons with disabilities are mentioned – an appreciated consideration given the disproportionate rates of disability Indigenous people face: “Continuing to work towards the co-development and launch of the Urban, Rural, and Northern Indigenous Housing Strategywill directly benefit Indigenous people living in urban, rural, and northern communities, especially Indigenous persons with disabilities, women and girls, and 2SLGBTQI+ people who are at particular risk of violence when experiencing homelessness and housing insecurity.” (109)
In a following discussion of how housing investments support the construction sector, persons with disabilities are again briefly mentioned alongside other marginalized groups: “For example, federal investments such as the Apprenticeship Service and the Union Training and Innovation Program have promoted inclusion and accessibility for women, persons with disabilities, Black and racialized people, and Indigenous people.” (109)
In the discussion of supporting a strong middle class, disability is again briefly mentioned alongside other marginalized groups in relation to cracking down on junk fees: “Low-income and vulnerable populations, including Indigenous people, recent immigrants, persons with disabilities, and seniors, will disproportionately benefit, since higher fees may result in spending a greater portion of their income.” (110)
This blog has been a long time coming. It’s been exactly 50 days since I touched back down in Ottawa after wrapping up the 16th Conference of State Parties to the United Nations Convention on the Rights of Persons with Disabilities in New York City as an official member of Canada’s delegation.
You would think that after what could very well be the highlight of my disability advocacy career I’d be rushing to write some in-depth tell all blog while the memories were all still fresh – but to be completely honest, 50 days later I’m still unpacking the experience and grappling with what I learned.
I’ve learned that life has the very annoying habit of never slowing down, especially when you desperately need it to. There’s never going to be a perfect time to write the perfect blog! There will (hopefully!) always be new projects at work, new gigs being booked, critical moments in the movement happening.
I’m trying very hard to get better at balancing my life and really exploring disability unrelated aspects of my personality – in other words, I need to get a hobby before I am completely burnt out. All of this to say, the blog has been a little inactive, this blog is getting uploaded way too late, and I can’t bring myself to apologize.
One of the highlights of the conference was meeting New Zealand disability advisor Matt Frost, who reminded me I have the right to enjoy my youth. (More on him later!)
Nerdy Stuff
Before I get into the exciting day-by-day, play-by-play summary of the conference, let’s get the nerdy stuff out of the way.
The United Nations was founded in 1945 following the end of World War II to encourage international cooperation and the promotion of human rights and world peace. (This is a gross oversimplification, please just roll with it!)
The UN is headquartered in New York City, US – and this is where all the cool, regular meetings go down. This includes the General Assembly, where delegations (official representatives of State governments) meet and discuss critical issues, and the Security Council, where 5 permanent States and additional revolving countries debate ongoing security issues and occasionally approve actions to be carried out by UN member states (think peacekeeping forces, sanctions, statements).
The UN Headquarters is also where annual conferences on international human rights conventions (laws) happen. These conferences often occur on the anniversary of a convention entering into force after enough State Parties (countries agreeing to the convention) ratify it – meaning they agree to be respect, protect, promote, and fulfill the rights promised in the convention at international and national levels.
A Conference of State Parties (COSP) to most conventions kicks off with the Opening Session in the General Assembly Hall. (If you’ve seen a President, Prime Minister, King or Queen deliver remarks in front of some fancy green stone, odds are they were delivering an address in the General Assembly.)
At the opening session, the Secretary-General of the United Nations Antonio Guerreros will deliver his remarks, followed by UN-appointed experts working in the field related to the convention being discussed. For COSP CRPD 16, this included Chairperson of the CRPD Committee Rosemary Keyes, Special Rapporteur on the Rights of Persons with Disabilities Gerard Quinn, and Youth Representative Ghanim al-Muftah.
The opening session generally takes up the entire first day, and for the following 2 days the official proceedings are discussions of the conference’s subthemes. At COSP CRPD 16, the official theme was “Harmonizing National Policies and Strategies with the CRPD: Achievements and Challenges.” As a policy nerd, I thought it was a great theme, but in practice I didn’t feel significant pressure on states to further policy harmonization. The subthemes (sexual and reproductive health, digital accessibility, and under-represented groups) definitely had more influence this year, particularly for the side events.
Killer segueway! While the official proceedings are undeniably very important, the real fun happens at the side events occurring throughout the conference.
Side events are generally hosted by a State Party, with participation from NGOs, advocates, and subject matter experts from around the world. And by fun, I mean in-depth discussions on more specific topics, Q&A sessions with internationally renowed experts, and networking with other delegates and NGO members.
Disclaimers
That’s the nerdy stuff! Hopefully you’re still here with me and have not left or fallen asleep.
Before we get into the blog-y part of the blog, I really want to note that my experiences were so heavily shaped by my privilege coming from a rich, bilingual, Western, G7 country.
While the UN has six official languages (English, French, Spanish, Arabic, Russian, and Chinese), almost all side events were conducted in English – meaning I was able to participate without any language barriers.
I was also a member of one of the largest government delegations at the Conference – meaning I had a strong network of colleagues supporting me. Many countries had very small delegations, and some were missing altogether. While funding is available for delegations from Least Developed Countries (a UN designation providing additional support and resources), lower and middle income countries are unable to send large delegations, which results in a lack of visible presence and influence at the conference.
Backstory/Lore
Alright. Nerd stuff is out of the way. Disclaimers have been given. As promised, here is my experience at the 16th Conference of State Parties to the United Nations Convention on the Rights of Persons with Disabilities, as a member of Canada’s official delegation.
While the experience technically started on June 12th when I headed to the airport at 4:30am, we’re going to have to quickly flash back to April 11th, 2022 when my boss told me our organization would be able to nominate up to three youth as potential delegates for COSP CRPD 15.
I had literally never wanted anything so bad in my life and immediately started hyperventilating while preparing my application. As an international development and human rights student passionate about disability rights, COSP CRPD had become the ultimate long-term career goal, the perfect intersection of my academic background and lived experience.
On May 19th, after a very excruciating month-long wait where I played Letters to Cleo’s I Want You To Want Me non-stop, I received the email letting me know I was selected. In the same email, I was also told due to changing pandemic rules and capacity limits, the majority of the delegation would be online only. Womp womp.
But as someone who loves online school, work, and events, I wasn’t going to throw away the opportunity just because I wasn’t getting a free ride to New York. I made the absolute best of the opportunity – wearing very cute outfits even if no one saw them, calling in to zoom side events from my shared apartment, aggressively networking, and making pretty unserious social media content.
Overall, I had a great time! Yes, it was shocking to learn so few COSP CRPD delegation heads are disabled, and yes, I shut my laptop on a side event on meaningful participation without a single disabled panelist, and yes, I felt like an absolute pariah representing Canada as MAID expanded (which, valid) – I learned so much about international disability rights, and began really connecting to the international movement.
While the thought of being invited back the following year had crossed my mind, I never actually thought it would happen. So when I received another email from The Government out of nowhere on April 4th inviting me back to the delegation for an in-person COSP CRPD 16 I literally did not know what to do with myself. Except hyperventilate. Recurring theme.
A month later, I was also asked to speak at Canada’s official side event on economic security and employment opportunities alongside foreign government officials and Rebecca Cokley, the executive director of Obama’s National Council on Disability. More hyperventilating.
I am someone who loves to overprepare for everything. It is my love language, it is my safety blanket, and it is the extremely helpful manifestation of my anxiety disorder. But by this time, I was dealing with a family emergency and wouldn’t fly back home until the weekend before I headed out for New York. For the first time in my life, overpreparation was off the table. I brainstormed my speech on the plane back home and finalized it over the weekend before heading back to the airport on Monday morning.
Travel Day
And this finally brings us to the actual Conference. A twice-in-a-lifetime opportunity and what could very well be the highlight of my career. (Don’t worry, I refuse to peak at 21 and will not rest until I find a way to top this.)
While Monday was the official civil society component of COSP CRPD 16, for me it was a travel day. I’ve been travelling the country over the last year for work, so saying I have an airport routine is an understatement. (Yes, blog on this and on disabled travel tips is in the works! That and a million other things…)
I hopped in a cab at 4:30am, arrived at 5am, and cleared security within 30 minutes. One thing you should know about me is that I am dead set on being the most efficient person at airport security. I will literally practice taking my laptop and liquids out of my suitcase as fast as I can. Unfortunately, there is something about my laptop bag that makes x-rays angry or something, so I just make a game out of being the most unbothered pulled-over person ever because there is literally nothing to worry about. I then thoroughly enjoyed my routine of checking my gate actually exists and doing an elite Starbucks-Booster Juice breakfast combo.
I’d only ever travelled to America once before and basically flunked the interview portion, so I made sure to rehearse this time. Which felt extra important because being a government delegation member going to the United Nations felt pretty unbelievable to me, and I felt it would also be unbelievable to pretty much anyone else ever.
During the little interview section at customs, I was met with a semi-skeptical look, but once I emphasized I was a youth delegate I was let through pretty easily. (We’ll get more into it later, but I was an equal member of the delegation with full access to the UN HQ. Explaining I was a Youth Delegate was pretty much a get-out-of-jail/confusion-free card for the entire week though.)
While I managed to jump on an early flight as spaces were open, my fellow youth delegate Paula MacDonald (who is Deaf) didn’t hear the announcement and didn’t get my text message about it until it was too late. Luckily, she and her partner made it through customs in time, and it was so great to meet her for the first time in-person after being on the virtual delegation together the year prior! We parted ways so she could pre-board, and then we found out I was sitting right in front of them!
After we touched down at LaGuardia, we grabbed a cab to take us downtown. One thing I love about NYC is the accessible cabs – so naturally Paula, her partner, and I started playing around with the “accessibility mode” on the cab’s touch screen. We then got stuck on accessibility mode (which was pretty much just a voiceover). Hilarious way to start your time in New York for a disability conference.
I checked in around 3pm and did my beloved “hotel arrival” routine, which like my airport routine is highly polished thanks to my work travel for NEADS. My advice: security check, unpack, shower. Planes are so gross.
Around the time we touched down in New York, I received an email from a civil society colleague inviting me to an informal Canadian CSO (civil society organization) dinner. I can’t stress how much joy this brought me – while I’ve always been accepted in the community and no one has ever questioned my youth or qualifications, being invited to meet everyone in person at this dinner was very validating!
Everyone made an effort to include me, without being patronizing or infantilizing. I also learned so much about the behind-the-scenes work that goes into running a CSO, which has stuck with me as I begin to set long-term career goals.
Another thing you should know about me is I am in a near-constant state of hypervigilance, especially when outside. And it’s not for nothing, it’s literally the exception for me to be able to go outside and not be harassed or not be convinced I’m being followed. Somehow, New York City feels safer than Ottawa.
After the dinner wrapped up, I half-ran home not because I was being followed – but because it was raining. It was such a liberating moment, to be unafraid walking home after being accepted by your community on your way back to prepare for your first day at the United Nations at age 21.
Day 1
Waking up for the first day of COSP CRPD 16 brought the same level of joy as waking up for Christmas when I was 6. I literally woke up and just started beaming.
And then I started developing my morning routine: every morning I would get dressed, speed walk to starbucks for breakfast and caffeine, do my makeup, grab a smoothie from the lobby, pack my things up for the day, and head out.
On the first day, we (the youth delegates) met up with two members of the delegation from ESDC before walking over together to Canada’s Permanent Mission to the United Nations. (I’ll keep their identities private, but I have to say the ESDC Government People were so patient in answering my millions of questions and entertained my mini-interviews about their career paths. Really great people that were really great to work with!)
Once we arrived at the Mission, we were guided to a meeting room for a pre-delegation meeting meeting with Minister Qualtrough, then-Minister of Workforce Development and Disability Inclusion. While I had done a few roundtables with Minister Qualtrough, spoken at her youth town hall, and attended her International Day of Persons with Disabilities event, I didn’t expect her to remember much about me. And then I learned I had gained a (favourable, I think!) reputation for “chomping at the bit” to get down to advocacy work and share my prepared points.
Once we were all settled in, Qualtrough got right to the point and asked us about the pressing issues our communities were facing – which I really appreciated. Then, we wrapped up our pre-meeting meeting and headed into a larger room for the full delegation meeting. In total, the delegation included Minister Qualtrough as delegation head, Canadian Ambassador to the United Nations Bob Rae as deputy delegation head, two ESDC officials, one GAC official, two BC government representatives, and one Manitoba government head. We were also supported by Mission Staff, who were like the ESDC reps kindly willing to entertain my infinite questions.
After going around the table and introducing ourselves, youth delegates were invited to ask the provincial representatives about their work. Knowing we were short on time and wanting to yield it to the other youth delegates, I said “I’ll just find you and grill you later.” Luckily, everyone laughed. And no, I did not actually grill anyone – we did have some lovely conversations though. Very non-grilly.
Once the meeting ended, we were given our official UN delegate passes and Canadian delegation pins – a semi-circle representing the Sustainable Development Goals (SDGs) with a maple leaf on top. New prized possession.
Then, we all headed over to the UN (where the Mission staff now entertained my questions, truly a group effort here) and entered through the official delegates’ entrance. It’s a fairly discreet, plain entrance not too different from the other entrances – but being able to go through it really cemented that I was an actual delegate at the United Nations. I’ve never been someone closely attached to reality, so little reminders like these really helped me grapple with the importance of this opportunity.
As one of the largest delegations, 6 of us headed off to Canada’s official table in the General Assembly, and the rest of us found seats off to the side. (Fun fact I learned later: delegate passes don’t work on the doors to the audience seating above the GA hall!) Soon after we took our seats, Secretary General Antonio Guerreros welcomed everyone to COSP CRPD 16 and gave his opening remarks. He then handed it over to the President of the General Assembly, the CRPD Committee Chair, the Special Rapporteur on the Rights of Persons with Disabilities, and the Youth Representative.
After opening remarks were delivered, the arguably coolest (and arguably nerdiest) part of the conference kicked off. Each country is given up to 5 minutes to share their progress realizing the CRPD, and after 3 countries an NGO or human rights institution are given 3 minutes to provide their comments.
Like last year, Minister Qualtrough was one of the very few delegation heads who openly identified as disabled. At a conference where Nothing About Us Without Us is said at nearly every side event, every country statement, every thematic debate – the impact of representing one of the few countries with meaningful disability representation finally hit me. I was slowly realizing just how much of a leader Canada is when it comes to disability rights. (Shocking, I know! More on this later!)
Once Qualtrough delivered her statement, I left the GA to get a feel for the building before the next side event began. Scoping out spaces helps me feel more secure in new places, and sometimes leads me to find very cool fun things – like life is just one big scavenger hunt. I stepped out to check out the Rose Garden, and then was convinced I was locked out of the building until I realized I just needed to tap my pass.
I headed up to the Delegates Lounge, and sat there for a minute to really show myself that I was a full, valid UN delegate that belonged there. As far as I know, Canada was the only country with actual youth delegates (meaning full delegates who are also youth) and I really wanted to fight off imposter syndrome and get high-ranking officials from around the world more comfortable with youth taking up space.
To everyone’s credit, I didn’t get a significant amount of funny looks – but I find most delegates are very good at minding their business, since they have so much. (I swear this is a hilarious joke. To probably a very niche crowd. Let me have this.)
After unashamedly exploring the UN and sufficiently geeking out, I headed down for my first side event hosted by the Zero Project, a non-profit based out of Austria. Every year, they put on a conference at the UN’s Vienna Office, where they discuss best practices and legal frameworks around disability rights.
It was an incredibly well-organized event, with their Model Policy Report printed out and examining model practices around CRPD and SDG implementation from around the world. You can’t imagine my shock when Canada’s Accessible Canada Act was the very first example of a national model policy.
At my very first side event, on the very first day of the conference, I was having an existential crisis.
I’d come into this space prepared to weather some backlash around Canadian disability policies because there is so much criticism domestically. But this space was the opposite of domestic, and I was so absorbed in my own privilege and in my own life that I failed to recognize the ACA as a significant milestone and best practice in the international context!
When I first entered the room, I was greeted by Robin Tim Weis, Director of International Affairs for the Zero Project. We started chatting, and I was confused by his positive perception of Canada. By the time I was leaving, I pulled him aside to thank him for organizing the event and let him know it completely changed how I see Canada in an international context.
This is also where I met the first of many Australians. There was literally a joke going around that the Australians took up two entire planes – and now I’m not even sure it was joke.
After learning about actually important stuff about Australia’s disability context from my new friend Alex who does great work at a human rights firm, I then learned he was interested in our wildlife. An Australian interested in OUR wildlife?? My perceptions of my own country were now being challenged on two fronts. I left Alex with the knowledge of what a fisher was, and his friend left me with a Kangaroo pin. Way to commit to the bit Australia.
I then headed over to a side event on accelerating inclusive sustainable development through promoting community care, and was pretty quickly let down as service providers, business models, and the care work sector were all prioritized over actual disabled people. Before I left early, as some panelists were clearly sick and it was a small room, I did pick up some helpful insights on using the SDGs as a mechanism to push for disability rights and inclusion.
With some extra time on my hands and no more side events scheduled for the day, I headed back to the now much more empty GA for the remainder of the opening session.
With the other Canadian delegates off on official meetings or at side events, a GAC representative was holding down the fort. GAC Rep (I will also hide her identity) was so, so cool to work with – she was Gen Z, had established a very impressive career for herself, and (guess where this is going) entertained my millions of questions.
Still existentially reeling from the Zero Project event, and miffed (there is no better word here) by the Care Agenda event, sitting at Canada’s GA table as an official delegate was the perfect setting to recalibrate and situate myself in an international context.
Once official proceedings ended at 6pm (love the UN’s punctuality), I headed back to the hotel to drop my stuff off before heading out for Canada’s informal gathering. In classic Carly Fox fashion, I ran into another delegate and had a great talk with them before heading out. A block later, I turn around and see said delegate walking my way. Obviously – we are going to the same place. I then turned around and very awkwardly made eye contact until they caught up.
We then walked over together, which was a great opportunity to grill “the entire BC government” as I called our two BC government reps. (I don’t even remember why I did this, but I think it’s still funny without context.) As you can probably guess, they were also very patient with me and entertained this joke and my questions.
We then arrived at the pub venue, and found out the NYC Trivia Team was actively trivia-ing. With a loud MC, loud music, and a crowded venue, we were really putting the informal in informal gathering. To really “youth” it up, I ordered a drink, downed it, talked to Qualtrough, almost lost my passport AND wallet, then left.
Let’s break that down.
Drinking is self-explanatory.
Once there was an opening, I was able to sit down and very informally tell Qualtrough that I really appreciate all the work she is doing, even if I don’t always come across that way. I also finally got to explain that I created the new verb “Qualtrough’d”, which is when you’re the only disabled liberal MP and are thus blamed for every single disability issue even if it’s out of your mandate, and even if literally every other MP should also care.
This was incredibly timely as she had to unexpectedly leave the conference to defend Bill C22 (the Canadian Disability Benefit Bill) in the House of Commons. Why C22 wasn’t scheduled to be discussed earlier in the season vs the week before the House rose for summer and the week of COSP CRPD16 is beyond me – but it does cruelly illustrate how useful my verb is.
About a week from time of writing, Qualtrough was shuffled off the disability portfolio during a massive cabinet shuffle. It was an incredibly unexpected (and personally upsetting) move, and I’m still waiting on the reasoning to come to light.
After this chat, I cashed out. After the waiter asked what the gathering was about and I explained, he admitted he was a Model UN nerd. I then admitted I was also a Model UN nerd. I then walked away without my wallet and passport, and he got it back to me. Some real Model UN comradery there.
Having drank on an empty stomach (some call it irresponsible, some call it basic economics), I ventured out into the New York night to hunt down some Sweetgreen. For my fellow Canadians, Sweetgreen is like if Freshii had actual flavour. After obtaining the Sweetgreen, I made it 10 blocks back to the hotel, holding my meal like a football and again half-running.
Yet another solid end to the day.
Day 2
I woke up the second day with my body metaphorically screaming at me.
I’ve learned I can get away with anything for about 4-12 hours before the arthritis pain kicks in – like some sort of get out of jail free limbo. On mornings like this I generally do one big yell (to scare the pain away, obviously), make myself get out of bed (which worsens the pain), and then get on with my day (which shockingly does improve the pain!)
After completing the Morning Routine once again, I had an extra hour before heading over to the UN – which I spent making last-minute “softening” comments for my side event that day (nicer words and add ons since I found out just the day before Canada was pretty good at disability from an international lens) and running it almost obsessively.
As someone who launched their advocacy career during the pandemic, I’m still not entirely used to in-person speaking gigs. At my most recent in-person speaking gig prior to this, I got the dreaded shaky voice. But I am someone who gladly embraces delusion, so I chose to tell my brain the side event was just a casual chat with the pals. (Spoiler: it worked!)
After a brief delegation meeting in the UN HQ (and after learning someone on this earth actually shows up to things earlier to me, looking at you Manitoba Man), I headed over to Argentina’s event on financial autonomy but “found out” it was Spanish only (spoiler: there was english interpretation, my bad!)
After checking the list of side events, I headed over to an event on disability data collection organized by the Organization of American States and the World Federation of Deaf Persons. No offense to Argentina or financial autonomy, but this really worked out!
This event had fantastic disability representation and very useful takeaways around supporting Disabled Persons Organizations (DPOs) in disability data collection activities to bridge government gaps and advocate for policy change.
I then headed over to Norway’s event on democratic participation and inclusive elections, which I was very excited for! While I have absolutely no political inclinations myself, I’m very passionate about civic engagement and improving disability representation in high-level decision-making positions of power.
To make things even cooler, the World Bank’s International Disability Advisor was moderating the event! The European Disability Forum was a key speaker, sharing how they found 400,000 people with disabilities were unable to vote in recent elections – particularly people with intellectual and developmental disabilities. Emma Bishop of Down Syndrome International, who is a fantastic advocate I met earlier in the lobby, shared how civic engagement and democratic participation was an empowering experience for her, and Dewlyn Lobo of People First Canada shared how she was prevented from voting by an ableist elections officer. Pretty stark contrast – clearly, Canada has a lot more to do to become barrier free.
Conveniently already in the same room for Canada’s side event, I anxiously puttered around until it was time to set up.
Before I started drafting my script for the event, I checked out the other speakers to make sure I wouldn’t repeat what they would say – and that is how I learned about the absolute icon and legendary disability rights advocate Rebecca Cokley. Not only was she the Executive Director of Obama’s National Council on Disability, but she specialized in disabled post-secondary students’ mental health.
Hello, new best friend!!
Rebecca walked in and I immediately told her I thought she was the coolest, and I’d like to say we hit it off from there! She told me this incredible story about how she learned the sign for “booty call” (which I won’t repeat here, but it came from a wonderful display of cross-disability connection), and I knew we would get through this event just fine. I could go into the event, but I’ll just link the recording here for anyone who wants to check it out. Watch here: https://media.un.org/en/asset/k1u/k1us9b5vq4
Spoiler: I got through the event in one piece! I genuinely believe that if Rebecca hadn’t been there, I wouldn’t have felt empowered enough to confidently deliver my speech. Besides the importance of diverse representation, having more than one person from the disability community really provides a safer space for both/all disabled people to feel more comfortable and supported when sharing their lived experience.
After the event, I went home and took a nap. I generally take naps after all my events, and this was no exception. While it did feel a little strange having no one there to celebrate with, I played Taylor Swift as I dozed off and it was still a great experience.
After the power nap, I headed back to UN HQ for the last side event of the day, where my fellow youth delegate Paula MacDonald was presenting!
At this point, I knew I was physically in trouble. I have this unexplained difficulty with walking where it feels like my connective tissues are on fire and I experience severe pain, often having to stop for the pain to momentarily subside.
Deciding to go back to the hotel for a nap was truly one hell of a chronic pain trade off – more energy but more pain. Them’s the breaks.
This side event was probably one of the best of the whole conference, organized by the CRPD Committee, UN Women, Women Enabled International, OHCHR, and Global Affairs Canada – literally an all star cast. I’ll just include the summary I submitted to The Government as part of my delegate work because it’s worth going in-depth on.
Co-hosted by the Committee on the Rights of Persons with Disabilities and Women Enabled International, and co-sponsored by Global Affairs Canada, UN Women, and OHCHR among others – one of the biggest events of the conference organization-wise was ironically in the smallest conference room. Exploring the experiences of disabled women and gender diverse people in both the women’s and disability movements, this event explored the double discrimination these advocates and activists face and shared useful practices to meaningfully empower disabled women and gender diverse people.
An advocate from Transforming Communities for Inclusion based out of India powerfully shared her experience as a psychiatric survivor who navigated the colonial system of mental health common in commonwealth countries. She shared how patriarchy worsens the experiences of women and girls with psychosocial disabilities as we lack the systemic power necessary to challenge harmful mental health institutionalization practices. She then shares how the CRPD changed psychosocial disability groups’ organizing to connect to the wider disability community, and challenged the mental health model to instead advocate for community inclusion and deinstitutionalization. She walked audiences through the three relevant lenses: mental health is narrow and prevents meaningful change, the SDGs allow for social justice and opportunity, but only the CRPD can safeguard our rights as psychosocially disabled people.
Following the TCI representative, a queer and disabled woman from Kenya shared her experiences relating to gender-based violence in an East African context, where intimate partner and caregiver violence goes unpunished and femicide against disabled women is growing in prevalence. The inaccessible justice system there, paired with a political landscape currently considering implementing anti-queer legislation, means queer disabled women are unable to navigate the justice system. While Kenya has a protection bill against disabled people, it promotes sympathy and charity narratives that deny disabled people their agency and autonomy.
After the Kenyan advocate, Paula MacDonald, a Canadian Youth Delegate, impactfully shares her lived experience as a member of the Cree First Nation in Saskatchewan who was adopted and raised by a white, hearing family from a young age. In this isolating environment, she was denied both her Deaf and Indigenous identities until she was able to attend residential deaf school and reclaim her Indigenous identity in recent years. Paula advocated for improved and guaranteed funding for deaf education, for accessible ASL education instead of pushing implants and lip reading, and for improved coordination between federal, provincial, territorial, and municipal governments concerning accommodations on reserves. Paula powerfully shares that Deaf Indigenous people should not have to choose between their identities – pursuing ASL education often requires Indigenous people to leave their reserves, and those on reserves are often unable to access accommodations and celebrate deaf culture.
After this incredible event, I rallied and headed off to Microsoft’s NYC Headquarters for their Disability Data and Drinks reception, where they launched their disability data database project and invited disability organizations to partner with them.
Luckily, this was not my first event with an open bar so I had that aspect covered. (Quick tip: rotate water and wine!)
I was lucky enough to get an invite from the Zero Project, and I then sent that invite to literally everyone I knew who was in NYC for the conference. (Turns out it was an open invite! No wrongdoing here!) I had a great chat with Robin from the Zero Project and offered some points on improving their youth program, and learned more about their very cool conference in Geneva.
And then I grabbed Sweetgreen, and went home.
Day 3
It was a good thing I only had one day left and the side event successfully behind me, because I swear I was literally eroding on the spot.
As I was on my Starbucks Speed Run, I ran into two of the interpreters who accompanied Paula, who were just running! (like on purpose!) Literally what can’t they do!
We had an extra hour before the delegation meeting, so you can imagine my surprise as I ran into half the delegation on their way to 8am side events. Cruel and unusual!
As Paula was flying home that day, the interpreters were also on their way out. I stopped and thanked them for all their hard work (and for translating the literal nonsense I say!), and they said the nicest, kindest things that gave me the push I needed to wrap up the conference the best I could.
After the delegation meeting, I very confidently walked into a building for a side event off-HQ campus, swiped my card, and didn’t get in. I saw security and showed them my pass, and I think they were going to manually just let me in when I realized I was in the wrong building! Like I said, I was eroding on the spot.
Luckily, I got it together and found the right venue in time to meet up with some other Canadians for an event on national autism strategies by the Autism Alliance of Canada!
This is when Matt Frost, the disability advisor from New Zealand, pulled me over and told me he really enjoyed my remarks at the event the day before, which was another much-needed boost at the end of a very exhausting conference.
Another boost was not needing to mask in this space – and once I stopped masking I realized just how emotionally exhausted I was from masking over the last few days.
I did not mask again for the rest of the trip.
This event featured a lot of lived experience, which is often sorely needed in autism-related events – both from self-advocates and from high-ranking government officials!
Afterwards, I did not have to move a muscle. Which is great, because I’m pretty sure they wouldn’t have cooperated anyways.
Once the event was over, two plane-fulls of Australians descended.
This is a joke, but there were a good number of Australians and we had a great chat about improving youth opportunities at COSP CRPD! I also took a bereal with some of them – so I guess you could say we were at least improving youth representation.
The Australian youth delegates were phenomenal, Kerri Joffe from ARCH Disability Law was incredible as always – but I had to walk out once someone started presenting on their adaptive sailing program where they never use the word disability because it’s a stigmatized word. I did not have the energy to not roll my eyes (aka mask).
I’ve learned that if you look like you know what you’re doing (and benefit from an immense amount of white privilege), you can usually get away with anything. (See the almost-UN building break in above).
And this belief was thoroughly reinforced when I walked into the intersectional gender rights event and was asked by an organizer if I was the UK government representative.
I tried to be comforting and say “I get that all the time”, which was probably subconsciously intended as a joke and was positively received.
I like to believe there’s a little section of my brain that is labelled “court jester” that functions when the rest of me is very tired.
While I was impressed by the fairly equal levels of gender representation at the conference, the next side event was almost entirely women. The gross failings of men to practice allyship and correct the systemic sexism they benefit from aside, it was a very nice, empowering atmosphere. Probably extra empowering for me as I could’ve pulled a Catch Me If You Can moment. (There is a clear correlation between the bad jokes in my blogs and the writing time I spend on them…)
I learned that the UK government has spent millions of pounds since the pandemic hit to support international DPOs working on gender-based violence, learned about how the Africa Disability Protocol surpasses the CRPD, and heard from a representative of the World Federation of the DeafBlind’s Croatian chapter with lived experience, which was the first instance of deafblind representation I’ve seen at any disability rights conference or event.
While my body thoroughly hated me at this point, I was more than happy to subject it to extreme physical pain as I made my way back to the mission for a meeting with Canadian Ambassador to the United Nations, Bob Rae.
A big, big thanks to the Mission staff for organizing this meeting last minute after I was unable to make the Canadian NGO-Ambassador meeting the day before.
I got there early and promised the delegation staff I wouldn’t cause any trouble, then immediately accidentally crashed a lady lawyers reception. I swear the Deputy Head of the UN mission is the nicest woman alive – she recognized me, came up, invited me to network, and encouraged me to get some food and drink without missing a beat.
To my credit, I generally had my shit together for the entire conference until this meeting- because when I saw him approach, I actually freaked out a little and had to ask if we stand when he enters the room.
And I’d like to think I still had it mostly together – I wrote my three main advocacy points on the back of one of the business cards I had custom made for the conference as memory prompts, and he swapped me cards halfway through the meeting which I will take as a good sign.
Now that I think about it, networking with business cards is too much like playing Pokémon when you were younger.
I usually treat people as people, and they usually seem to like it, but I had 20 minutes with the ambassador (and another youth delegate) and wanted to get right to business. Despite this, here are my people behaviour observations: Rae was fairly laid back while being to the point, chose tea over coffee, and wore piano socks. Cool guy.
After this event, guess what I did. You know it – I got Sweetgreen.
And then I headed back to HQ for the final side event of the conference on ratifying the CRPD’s Optional Protocol (OP).
You can (or can’t!) imagine my absolute joy when I saw Matt Frost there, and then when I then learned he’s actually speaking at the event!
Matt pulled up a seat next to me and we started chatting more about the autism event from earlier in the day when another panelist pulled up a seat on the other side of me. They also ended up speaking back to back, which drew attention to the 21-year old sitting in between them making very amused faces.
(I just found it hilarious that I was just chilling there. Like a capybara. You don’t know how it got there but you let it be.)
This was a perfect event to wrap the conference up with, as government representatives discussed how ratifying the OP provides helpful feedback from the CRPD committee on how to improve their ratification processes.
To sum up the OP, it’s a procedural convention that allows the CRPD committee to provide feedback and that sets up a mechanism for third party complaints. The complaints mechanism usually deters States from ratifying the OP, and only 104/186 CRPD parties have ratified it.
Matt spoke on how New Zealand has benefitted from the CRPD Committee’s feedback, and how they have a coalition of compensated DPOs who independently monitor CRPD implementation. This was a disability advocacy ammo goldmine.
And that was it! I went back to the hotel, ordered in dinner (not Sweetgreen this time!), and just generally collapsed. Arguably an anti-climatic ending, but pretty authentic to how I generally live my life.
The next day I packed up, took the subway to LaGuardia (side note: I am in love with the NYC subway and returning to Ottawa and its sham of a – I don’t even know what to call it – a light rail service is cruel), and flew home.
Post-COSP
A lot of people have this weird misconception that once you land one great opportunity, more great opportunities find you – and this is the biggest lie I have ever heard.
This incredible, exhausting, eye-opening, existential, twice-in-a-lifetime-or-more-if-I-can-help-it opportunity is just the start of the next chapter.
There are new contacts to follow up on, new organizational connections to maintain, new ideas to develop, new everything and anything!
I tried to write this blog returning from a hometown right after the conference, or at least start the outline.
A lot of the time, I just write my blogs without an outline (completely unhinged you could say) – so what started as intent for an outline has turned into the blog’s unanticipated ending:
I am sitting here trying to write the outline of this blog on a bumpy train on my way back from an extended work trip listening to Fleetwood Mac’s The Chain on repeat and I feel my resolve and my fight and my energy and everything I need to do this work come back to me.
I’ve been so committed to being transparent about my work, wanting to show it’s not all glamourous and paid travelling (though there is a shockingly large amount of that) – it’s exhausting and painful and grueling.
But I think I’ve forgotten how important and cool and challenging (in a good way) this work is. Maybe I’m burnt out, and maybe my health is deteriorating, and maybe it’s hard to wrap up all these conflicting emotions and experiences in a blog – but this has been the best experience of my life and I know I’m not going to rest until I’m back there.
I’m having a moment. More likely a meltdown. All because of a media release on access to sexual and reproductive health.
Before we get into why I am an absolute wreck right now, let me make three things clear:
One – I am a firm believer in access to sexual and reproductive health. To abortion, whatever the reason for it. To quality sexual and reproductive health information. I am proudly pro-choice.
Two – I will always support other marginalized communities in their advocacy work for better access, opportunities, and outcomes.
Oppression is not like pie – there’s more than enough to go around. Public opinion and support and funding are all also not like pie – we as marginalized communities do not have to fight each other for our slice – we can just bake a bigger pie.
And when one marginalized community benefits, we all benefit. Our struggles are intertwined, our people are diverse and deserve to feel fully welcomed in their communities.
And three – I don’t believe critiquing “good” things makes them any less good. In fact, I believe we need to critique these good, progressive measures to ensure things keep getting better for everyone.
If we don’t critique things, if we settle for things the way they are – things won’t get better, they’ll just stay the same. And I’m here to tell you that I can’t survive more of the same. So many disabled people will die if we keep having more of the same. And the same is the continued marginalization and exclusion of disabled people.
From progress. From funding. From opportunities. From decision-making positions. From meaningful inclusion in policy making and program design. From education. From employment. From society.
Now that that’s all been said, let’s unpack why I am mid-meltdown.
As someone with a uterus (we are not doing transgender, non-binary, and genderqueer erasure here!), I have a bit of a stake in sexual and reproductive health.
Actually, everyone does. You’ve all been born, right? (Not that I should have to argue the whole “everyone should care about this” angle but that is where we are right now.)
And as someone who is disabled and has a uterus, I’m pretty passionate about accessible and disability inclusive sexual and reproductive health.
So you might be able to imagine how I felt after reading a media release announcing significant increased funding for sexual and reproductive health for marginalized groups that didn’t mention disability once.
Now, I won’t list the marginalized groups that were listed because that perpetuates an us vs them rhetoric. It’s not marginalized group vs marginalized group, it’s all of us vs systemic oppression.
What I will list are a few words frequently mentioned throughout:
“barriers”
“access”
“stigma-free”
“previous experiences of discrimination with the health care system”
“accessibility of information and services for underserved populations”
“the right to make decisions about their own bodies”
“increased risk for poorer sexual and reproductive health outcomes.”
It’s hard to describe what this feels like to someone who isn’t disabled, but to grossly oversimplify it: it’s almost like being picked last for dodgeball, but you aren’t even picked at all. And no one seems to notice. Or at least, they don’t speak up.
(And this metaphor is unfortunately not so metaphorical – plenty of disabled people aren’t allowed to participate in gym class. Or they’re not invited out. Or they aren’t even allowed to leave their homes.)
So, here I am, not playing dodgeball.
Less metaphorically, here the disability community is, once again, not being included in funding and programming designed to make programs more inclusive and accessible for marginalized groups.
And this one media release, while devastating for its disability exclusion alone, was a boiling point for me.
Already in this awful little exclusionary pot was the fact that disability was almost excluded from the anti-discrimination clause of the Canadian Charter of Rights and Freedoms.
That the UN Convention on the Rights of Persons with Disabilities passing 61 years after the UN was founded.
That Canada’s first federal accessibility legislation passing less than 4 years ago.
That most provinces and territories don’t even having accessibility legislation.
That countless equity, diversity, and inclusion foundations, programming, and policy actively exclude disability.
That actual human rights programs and offices and lawyers don’t adequately include and incorporate disability.
Since we’re rolling with this boiling point pot of water metaphor, let’s talk about that obnoxious steam that fogs up your glasses and hurts your hand while you’re stirring – the accessibility washing.
Accessibility has finally seemed to enter mainstream discussions. And before you get all excited thinking this means great things for disability inclusion, I’ll have to stop you right there. Because accessibility is being used to mean affordability, or better outreach, or better responsiveness.
Is that by definition correct? Technically!
Is it at the very least a little messed up to hijack a word commonly associated with the disability community to exclude them from measures they could benefit from? Absolutely!
And this awful phenomenon is cruelly complimented by organizations, academics, and governments using accessibility to gloss over disabled people entirely!
Instead of discussing harassment, discrimination, ableism, and stigma, it’s easier and more comfortable to discuss barriers in the built environment, communications, and technology!
But barriers are created, maintained, and perpetuated because the world does not think about disability! So us disabled people are stuck in this gaslight-y purgatory where everything is about us, but nothing is for us.
Yes, accessibility benefits everyone. But by emphasizing this universal benefit over addressing the very real discrimination and barriers disabled people face, accessibility risks coming at the cost of further marginalizing disabled people.
We are moving in the wrong direction, unrooted and unguided due to our conscious choice to ignore disability.
And just like sexual and reproductive health services, I’m glad progress is being made – but I sure as hell have every right to criticize the fact that disability is being excluded.
I started writing this blog with me teeth chattering, with my chest quaking, with my breath shaking and tears rolling down my face.
I wrote the following at the start of my breakdown but kept it until the end. It’s unedited and it is straight from the broken heart of an exhausted 21 year old disabled queer woman who just wants to be included. Who just wants disability to be included without having to fight, and beg, and spend the rest of her life demanding change:
I am so tired of being an afterthought. I am so tired of being ignored. I am so tired of my community’s history being suppressed and hidden and unrecognized. I am tired of begging for recognition when we deserve so much more.
I am so tired of begging for the scraps of inclusion. I am tired of begging for media attention because the media doesn’t care. I am so tired of trying to appeal to politicians because they ignore us because of an inaccessible democratic system.
And I am so tired of the sympathetic dismissive smiles and head nods from the people in power who will never understand what it is to be disabled. I am so tired of the public not caring about disability and not feeling the need to care.
I. Am. So. Tired.
And I think about how I’m dedicating my whole life to disability issues and how daunting that feels sitting here at 21 sobbing my heart out after a media release.
Just a media release.
It’s so easy to pretend like it’s just a media release.
I’d rather pretend it’s just a media release and not a symptom of society’s continued apathy towards disabled people. Of our continued oppression.
I’d rather pretend this is a one-time issue and not an every day lived reality. But it is. And unlike what feels like the majority of the world, I don’t get the privilege of ignoring this reality.
It is so easy to accept things the way they are. It is so much harder to have to fight for change. And it’s still hard to fight for change when there’s really no alternative.
It’s hard, it’s exhausting, it’s demanding, it’s all-consuming, and it is the only choice I have.
I am surrounded by brilliant disability advocates and activists fighting and working for change, and while I know the weight of the disabled world does not rest on my shoulders, I don’t feel like I’ll ever be able to walk away from this movement.
So please, stop making me have to fight. Stop making me have to beg. And stop saying nothing about us.
I can’t bring myself to apologize for the hiatus – it was much needed, and I know if I went to put up some banner on the website I would just remodel the whole thing again.
(By the way, how are you all liking the new streamlined site? I didn’t mean to do it but as I often say when my brain and body do whatever they want, “I’m not controlling this thing”)
I don’t know how much I can call the hiatus a break – I’m pretty sure I almost died in November between the tour, International Day (more like week) of Persons with Disabilities, and exams, but December was spent actually resting surrounded by loved ones.
More on this later.
Life feels as crazy as I am – and 2022 was no exception. Don’t go using this against me, but my birthday is January 1st – and I genuinely thought I was turning 30.
It wasn’t until my dad told me he was turning 61 (not 70) that I clued in on my extra 9 years left.
It’s not that this year was challenging or unbearable – it was just so jam packed with so many cool fun things it could have genuinely filled up 9 years.
So, I feel like the last year deserves a lil recap blog. I’ll share some of my favourite moments, reflect on some important lessons, and let you know what’s on for 2023!
But before we get into the year behind us, I want to talk a bit about where we are now, and where we’re going.
I gotta be honest, I’m kind of exhausted. I’ve been working myself way too hard for way too long, and I know if I keep going like this I will probably end up living in a cave. Again, I thought I was turning 30 at 21. I’ve got some work to do here.
When I started this blog, it reminded me just how much I love creative writing. Then reality kicked in and I turned it into yet another job. In my ongoing effort to not burnout and/or die, we’re taking the blog back to the creative outlet and enjoyable hobby it was meant to be.
Am I still offering trainings and consultations? Absolutely.
Am I going to just write from the heart for a bit? You bet.
But it’s so hard, balancing what is easy and what is needed.
What you don’t see behind the scenes are the disabled youth in my DMs asking for advice to break into the advocacy sector, or the parents of disabled children telling me how my blog helped them unravel their ableism, or the conversations between two strangers as they bond over lived experiences similar to those shared in my blogs.
And when I’m in a position where these things are possible, where this impact is possible, sometimes I feel so selfish taking a break.
But, the world continues to move on without me, and countless incredible disability advocates continue to do such important work. Acting like the global disability rights movement rests solely on my shoulders isn’t just completely ignorant and egotistical, it’s dangerous for my mental health and wellbeing.
There’s a lot going on on the horizon – I’m continuing to break into disability circles in the public service, I’m continuing my international work with the Council of Canadians with Disabilities, and I’m still going strong in my work at NEADS. I continue to wake up every day and do what I love for my jobs.
As of now, I don’t have any major announcements. And sometimes, I’m afraid I’ve peaked too early. I’m afraid that if I don’t book some major international conference every year, I will become obsolete.
These are all very big and mostly irrational thoughts and feelings I’ll continue to work through, and I hope you’ll join me on that journey.
(This is the part where I say “keep an eye out for this blog”, but who knows if that blog will actually happen? Gotta keep ’em guessing!)
What I do want to focus on this year is community and connection.
Disability advocacy cannot happen in isolation – I serve my community, learn from my community, live in my community, and love my community.
My disability reading list keeps growing, as does my networks. I’m learning about new concepts, new organizations, new movements that are propelling the global disability rights movement forward, and I’m energized by the direction we’re collectively heading in.
Before breaking into the recap, I need you all to know I literally had to research for this blog. Emails, IG stories, Facebook posts, LinkedIn updates, the list goes on. Memory issues aside, it’s been a long damn year! So, let’s get into it.
In the context of disability advocacy, January was the calm before the storm.
In the context of my real life, I lived through a white supremacist, conspiracy theory, alt right occupation of my city for weeks. Businesses shut down, I didn’t go to school in-person because they kept circling campus, and I refused to go outside.
What happened in January was not a one-time thing – we’re still learning more about what really happened behind the scenes, and my fellow citizens remain traumatized. This is definitely killing the blog’s vibe right now, but the truth needs to be shared.
News coverage of the occupation – especially in its first weeks, was incredibly biased towards the occupiers, and democratically elected members of our government supported their violent, criminal actions.
I’ll stop there for now, but please remind yourselves that political violence is alive and well in Canada. Fight hate wherever you see it, check in on your neighbours, and hold people accountable.
February was so incredibly busy on the disability advocacy front! (Editing Carly here: what a harsh vibe shift!)
I was invited back to uOttawa’s International Development Week to participate on their panel on the intersections of systemic inequality, and you can read my accompanying blog on it here.
I do not know who thought a 24-straight-hour conference was a good idea for anyone, let alone disabled youth, but I only dozed off for about 3 hours!
At GDYS, I learned about climate change in the Pacific region, institutionalization across Asia, humanitarian disaster response in the Middle East/North Africa, and mental health in Europe.
This was my first ever international conference, and I was absolutely hooked. Learning from my peers around the world and networking with them was so empowering, and I’m still in contact with so many delegates today!
I also participated in an Accessibility Standards Canada Youth Roundtable for NEADS, where government representatives really took the time to listen to our concerns and took my arguably over-enthusiastic criticism all too well.
This was the beginning of my arc towards seeing advocacy and disability allyship as a two-way street.
March was also incredibly busy.
(At this rate, I’m afraid I’m going to open all the month summaries like this.)
In March, I launched this blog, and things took OFF! 21 (now 22) blogs, 2157 visitors, and 3781 views later, I want to thank everyone for supporting me on this journey.
What began as a creative outlet quickly spiralled into a whole business, and will hopefully become a creative outlet again.
In the same month, I began to notice how my relationship with my peers was shifting because of my advocacy work (you can read my latest blog on that here).
This really hit me as when I arrived at an inaccessible student centre gala, up a flight of steep stairs, I was greeted with an apology.
Was I going to most likely rip into these people later into the night? No! But I was going to be so incredibly disappointed in them.
To date, they have not hosted another inaccessible event, and I know they were genuinely apologetic. Prevention is preferrable, but I’ll take sustainable change any day.
At NEADS, I hosted our third Virtual Access for All panel with disabled student leaders across Canada – this was such a refreshing and energizing experience that reminded me of how strong the disabled student movement is, and how important platforms to network and discuss our shared experiences are. You can watch the entire event here.
April was, yet again, busy. At this point, I have no choice but to open all the summaries like this.
I kicked off the month with an Instagram Live on self-advocacy, hosted by the Canadian Arthritic Patient Alliance and Take A Pain Check Podcast, and joined by fellow guest Anna Samson.
Another event this month was a virtual accessibility webinar for NEADS, where I discussed accessible social media practices alongside some colleagues discussing websites and programming. You can check it out here!
I started publishing on The Mighty, a site I first found at 12 when I was struggling with mental health issues, and returned to at 16 when I was diagnosed with my first chronic illness. To come first circle and maybe even write a blog a 12-year-old finds some comfort in was such a profoundly impactful moment for me.
Speaking of profoundly impactful moments, this was the month I was appointed International Chair for the Council of Canadians with Disabilities!
To work alongside the very people that fought to have disability included in the Charter continues to blow my mind, and I am so unbelievably grateful for the opportunity to learn from them and to start paying it back.
CCD is always looking for fellow youth, so don’t be afraid to shoot me an email!
May was, you guessed it, busy! And while there weren’t events this month, there were some major milestones!
This was a BIG month for blogging: my blogs on self-disclosure, identifying as disabled, and consultations set an impossible precedent of three blogs a month. I do not know how May Carly did it, and I fear her.
In my work at CCD, I joined Global Affairs Canada’s disability in development working group alongside some incredible experts in the field.
I always look forward to these meetings, and am so grateful for them welcoming me in. In this working group, I really feel as though my youth has been celebrated and treated as the necessary perspective it is!
It’s also allowed me to put my (ongoing) degree in international development to use, and it’s inspired me to specialize in disability in(clusive) development – shockingly, this sector is largely neglected, so it feels like there is a lot of work to do!
Job stability is great and all, but I really wish in this field it wasn’t…
I started my very first co-op in the public service and absolutely adored it.
I began seeing the federal government as an essential partner in disability rights, and it began to shape how I approach advocacy work at national and international levels.
I quite literally can’t type this out without welling up a little, but being selected as a Youth Delegate was so profoundly meaningful to me in so many ways.
I was and am so thankful to NEADS for nominating me and for giving me the confidence I needed to launch my advocacy career, to CCD for supporting me in my international work and reminding me of how the disability rights movement got to where we are today, and to everyone who has supported the blog and my advocacy work.
And I was so incredibly lucky to be selected alongside Zoe Elverum and Paula MacDonald, who have taught me so much and are so unbelievably talented and knowledgeable and resilient.
I also had COVID-19 this month. Not fun.
In June, I went on AMI’s Now with Dave Brown to discuss the upcoming UN conference, and then I was there (virtually… but COVID-19 safety is COVID-19 safety, and health measures are disability justice.)
While the actual conference proceedings are important and impactful in their UN-y way, the real action happens in the side events.
I attended Canada’s youth participation panel featuring the absolute powerhouse Paula MacDonald, Inclusion International’s event on their Listen, Include, Respect guidelines for including intellectual disabilities in disability advocacy, Light for the World’s “Youth Changing the World of Work” event, a panel on meaningful disability participation without a single disabled person, an excellent UNFPA panel on bodily autonomy, and a moving event by Korean Association of the Deaf on the importance of sign language recognition.
In all honesty, this experience was bittersweet.
I had this incredible opportunity, but have to admit I was disappointed that my originally in-person attendance was cancelled.
I was so excited to represent my country, but I also carried the weight of our country’s significant failures – we remain a pariah on the international stage, and that is not something I can take pride in.
I was thrilled that the theme was meaningful participation and inclusion in society – but had to refrain from, respectfully, losing my shit when entire state delegations, panels, and events lacked disability representation.
All in all, I left resolved.
Resolved that I was going to spend the rest of my life ensuring Canada is no longer an international disability rights pariah.
Resolved that the Convention on the Rights of Persons with Disabilities would become fully ratified within my lifetime.
And resolved that I would contribute to this meaningful disability inclusion and participation, mainstreaming it into international relations and international development.
July saw me finally slow down (as if it could follow June!)
I fled my city in fear of another occupation on Canada day, and thus had a spontaneous and restful home visit.
When I got back, I solo hiked in Gatineau Parc (you can read all about it, and the wild turkey encounter, here), saw General Idea’s moving exhibit on HIV/AIDS at the National Gallery, and hosted Disability 101 at my school’s Women’s Resource Centre to celebrate Disability Pride Month.
I was working full-time on top of this, but I think I was realizing it was time to slow down.
August was both a time of wrapping up and starting fresh – which naturally my ADHD brain hated.
I quit my student association after a really disgusting show of ableism, and realized that what I had seen as support for my disability advocacy was merely appeasement or avoidance. That’s stayed with me.
I went home (this time on a planned visit,) and spent some quality time with family.
I interviewed with the uOttawa Gazette for an article about my disability advocacy, and the photo selected continues to haunt me and freak me out. (Depersonalization when you do a lot of public facing work is nothing short of hilarious. I am half joking.)
And, I launched NEADS’ Back to School Campaign, which gave disabled students a platform to speak out against the incredibly ableist, inaccessible, and discriminatory back to school policies many universities were enforcing.
I knew this campaign had to happen after reading so many DMs and emails from students expressing their frustration, and sharing how alone they felt in fighting back.
While I may joke it was to say “I told you so” to any disabled student that felt alone, I really feel as though the campaign helped us weather an all-together god awful term.
In September, I was busy at work fighting against inaccessible return to campus plans, busy at school living with the consequences of these plans, and busy in my advocacy work raising awareness of the impacts of these plans.
I wrote a very from-the-heart blog about how frustrating it was to see my peers be excited about “going back to normal” while I was figuring out how to graduate without getting COVID or dropping out, and the student paper gave me a platform to raise concerns about the Fall 2022 term’s inaccessibility.
October was my most “normal 20-year-old” months yet.
I celebrated my one year anniversary with my partner, went hiking during Fall Rhapsody, visited my parents in Kingston (we don’t live there, nice try stalkers!) and went on a school trip to Washington, D.C. (where I saw really, really cool stuff from the 504 sit-in – had to get something disabled in!)
And in November, one of my most “not a normal 20-year-old” months.
I attended an event on feminist foreign policy at the Global Centre for Pluralism, skipping a mandatory class workshop to do so (because allegedly I am still a student), and experienced my first international relations open bar event.
Being 20 is great, but I’m not sure that’s a normal 20-year-old activity.
This month also saw not one, but TWO NEADS’ State of the Schools Tour stops!
As part of my job (which continues to blow my mind,) I got to travel to St John’s, Newfoundland and Halifax, Nova Scotia to speak with other disabled students and give them a platform to share their thoughts, experiences, and concerns.
For my job.
At 20.
I only wish I could’ve recorded my internal monologue while on the plane home after the tour stops, on a flight with free drinks.
Right after the tour, it was International Day of Persons with Disabilities (IDPD) – which is really more of a week.
I had the honour of representing NEADS at Minister Qualtrough’s IDPD reception, where I had to experience an in-person reception for the first time.
Fortunately, people seemed to be excited I existed off zoom and were thus very forgiving of all my little quirks and not-knowing-what-was-going-on-at-all-isms.
Was being in the same room as the disability community’s leaders, MPs, ministers, senators, and the prime minister intimidating? Probably! I would like to thank my poor grip on reality.
And then, December.
On the disability advocacy front, my guest spot on I Am Not My Pain Podcast launched, and I delivered closing statements at Minister Qualtrough’s IDPD Virtual Youth Town Hall.
Being asked to deliver the closing statement by the same team I worked on the UN conference with meant so much to me, and I really enjoyed learning from my fellow disabled youth advocates.
Somehow, I managed to survive exams coming fresh off a tour and IDPD week.
I lived off energy drinks and instant noodles, then went home where I realized how absolutely devastated my body was by this year.
I learned I was turning 21, not 30, and tried not to touch anything work-related (save work at NEADS – you didn’t really think I was capable of a full cold turkey, did you?) for the rest of the year.
I still can’t believe all this was only one year.
I don’t even want to go back and edit all of this because I’m overwhelmed at how much there is to go through.
So, hard pass. I’m not being graded here. Perfectionism will kill me.
I’m saying this as if I haven’t spent hours on this blog already.
I’m not even convincing myself right now. I’m going to stop this tangent.
Editing Carly here: after doing the “editing” where I just section the blog out, I remain unconvinced by my own writing from mere minutes ago.
Future Carly probably remains unconvinced as well.
So, what did I learn this year?
Factually, a lot.
A lot about humanitarian disaster response in the Middle East, and how the Korean Deaf community remains ignored by their government, and how a lot of UN States could not cough up a single disabled member of government for a conference where the theme was meaningful participation.
I learned a lot about professionalism – I’ve imposed a two drink maximum on professional outings and am figuring out when to mask and not mask (again, another blog for another day.)
I learned that you can have breakfast inside of an East Side Mario’s at a Holiday Inn in St John’s Newfoundland, and that you can never get too tired of Booster Juice, especially in airports.
I learned that I’m not the only disabled student that feels alone under the massive rollback of accessibility and disability rights across Canadian universities.
I learned that I’m not the only disabled youth advocate that feels incredibly burnt out and afraid of peaking too early.
But above everything, I learned to slow down. I learned to listen. I learned to appreciate the moment, and the people, and the places, and the experiences.
And that brings me to all the thank yous. For the best year, the best people, the best opportunities of my life – so far.
As I’m learning to become more vulnerable, I’ve found gratitude is somehow the easiest emotion to express. So, please take the one emotion I can adequately express and run with it if you get what I mean.
Thank you to the NEADS team. To my boss Frank for hiring me and keeping me on. To the touring team for some incredible memories and for keeping me in one piece. To the #MyNEADS Community for showing up to our events. To the student groups who remind me that the work we do can be so impactful. To the students who showed up to the tour stops. To the NEADS Partners and Pals.
Thank you to Heather Walkus and the Council of Canadians with Disabilities for not just taking a chance on me as International Chair, but for standing by me and ensuring I have what I need to succeed in this role.
Thank you to all the GAC Disability in Development Working Group members for being so welcoming, encouraging, and energizing.
Thank you to the Fulcrum, the Gazette, Now with Dave Brown, Take A Pain Check, Canadian Arthritic Patient Alliance, The Mighty, and the uOttawa Student Union’s Women’s Resource Centre for giving me a platform.
Thank you to the internet strangers who have commented, emailed, and DMd me to tell me how my writing has impacted them.
Thank you to my colleagues in the public service who have shown me that there is a place for me here, and that I am capable and empowered to make change both in my workplaces and across the country.
Thank you to the Instagram mutuals who support my disability advocacy account tangents, and for showing me all the amazing ways advocacy can happen.
Thank you to anyone who has ever had a class with me for listening when I talk about disability in development, and for my incredibly forgiving profs when I miss so many classes.
Thank you to my friends who keep inviting me to things we both know I’m not going to, and who keep me in the loop online when I am nothing less than a hermit in person.
Thank you to my partner for your persistent support and encouragement, for listening to my rants and getting me hot water bottles, and for your family probably making up like half of my website stats.
Thank you to my family, to my twin for introducing me to advocacy, to my dad for treating me like a regular 20-year-old daughter, to my mom for managing to be enthusiastic without nagging, to my dog who humbles me by trying to kill me, and to my granny who recently subscribed to this blog.
Thank you to anyone who has read any of my work, attended any of my events, or has supported me in any other way.
2022 is already over, but with that the 2022 recap blog is now wrapped. To a 2023 that only feels like one year!
I have this thing where sometimes I don’t feel like a regular human person – like people see and treat me differently, like I can never really be a regular human person, like I’ll never really fit in in any space I occupy.
And while I’ve struggled to explain the feeling itself and the reasons why I feel this way to my (new and super awesome) therapist, an unfortunate ableist experience a few hours ago clicked something in place:
I don’t feel like a regular human person in class, at work, with peers because I am always first and foremost a disability advocate.
Because I am “Carly Fox, Disability Advocate”, before I’m “Carly Fox”, and way before I could ever be just “Carly”.
And when I incorporate my disability advocacy into the many spaces I occupy and into the many capacities I hold, there’s a lot of unrecognized and uncredited emotional labour that goes into this “insider activism”.
There’s a lot to unpack when it comes to insider activism and emotional labour – the power dynamics, the shifting relationships with others, the consequences.
So, may I present a whole blog to explain to you and myself (and maybe my therapist) why I believe I am a regular human person, and why sometimes it feels like everyone and everything (and everywhere, all at once) is forcing me to feel like I am not.
While it feels a little arbitrary to boil down my (allegedly) three-dimensional existence into three clean categories, that’s what we’re going to have to do to keep all these big thoughts and feelings understandable and approachable.
In classes, at work, and across my social networks, my insider activism faces different dynamics and consequences, and has been positive, negative, and everything in between.
At this point in my life and my degree, classes and academic performance are finally not the defining metric of my life – post-secondary just feels like a pyramid scheme anyways.
Deans, professors, researchers, scholarship people – please know this is Carly Fox’s evil twin writing this and she just loves academia so much and will totally never leave it ever and you can also singlehandedly fix her uncompensated emotional labour and all of ableism ever through scholarships.
(To everyone else reading this, it is Carly Fox and that was a little joke.)
Back to class: insider activism at school often requires challenging my own professors and program curricula – while I usually have some cool peers who will back me up, I am metaphorically biting the hand that grades me.
(But hey, grades are usually arbitrary across students, professors, and programs anyways.)
A really positive insider activism experience I had was on the very first day of my sustainable development and resource management class (and my first class of third year) – as a disabled student, I was pretty anxious about this class due to pervasive environmental ableism in the field.
So, when the professor asked what we’re looking forward to learning about this semester, I figured I might as well get the ableism test over right away and shared that as a disability advocate, I’m looking forward to examining environmental ableism within international development and climate action.
My professor, who already knew I was disabled, really, really impressed me with his response acknowledging the systemic ableism within the field (!!!!!), and inviting me to incorporate my experiences and perspectives in class whenever I wanted (!!!!!!!!!!!!)
While I was surrounded by some close friends and didn’t have to self-identify to my prof as he already knew I was disabled, this seriously relieved my anxiety and created a safer and more inclusive environment that has lasted throughout the semester so far.
And now for the negative experience that still makes my stomach clench and heart hurt: in a class where I was routinely called upon and singled out for my disability advocacy, we were working on a hypothetical social innovation and landed on an app tracking wait times across medical clinics and allowing for crowd-sourced ratings of doctors.
Really excited about this (albeit hypothetical) innovation, I brought up how disabled people often face medical ableism in healthcare settings, and how crowd-sourced ratings could literally save lives.
Then, the prof said something about broken legs and elevators, and the class moved on.
The Class. Moved. On.
In a class that stressed “intersectionality”.
With a professor that routinely called on me and singled me out from my peers for disability advocacy insights.
With peers that prepared for my disability questions during their presentation Q & As.
Don’t tell anyone – because apparently some people out there still think I am at least a little tough or a little scary – but I went home and cried right after that class.
Insider activism in social networks gets a bit more abstract – after all, what the hell is a social network anyways? (Aside: I insist on watching The Social Network as a satire, I can’t stomach it otherwise.)
In social networks, I’m challenging my own peers – with or without support from my other peers – with no clear voice of reason or authority to appeal to if things turn south.
The whole “people thing” is already way too much for me – the little nuances in interactions, the “he said, she said”, the reactions and the gossip – I don’t know how other people cope with it.
The most positive experience and outcome of my insider activism in social networks so far has been developing a network of disabled students at my school, and having other disabled students reach out to tell me that because of my advocacy, they felt comfortable advocating for themselves, or even just openly identifying as disabled.
At the end of the day, with all of the bad experiences and emotional labour and frustration – this is what keeps me going. This is what keeps me coming back. This is what makes all of it worth it.
A not so cool at all experience was when I brought up the need for online and hybrid events during 101 week, only to be told it’s “too hard” to try and just not worth it.
I quit within two hours of that – if people aren’t listening to your insider activism and are okay with openly discriminating against you and your community, it’s not worth it.
Run, walk, wheel, hobble, whatever suits you best.
And finally, insider activism at work – the hardest kind (at least for me), and the most consequential (whether positive or negative).
The dynamic here is a serious power imbalance: I’m challenging my senior colleagues or supervisors, and while there are designated HR systems to appeal to if things go south, there’s always a risk of being fired, not being promoted, or not getting opportunities.
And when you have to pay your bills and build up your career to keep up with the cost of living, you aren’t too inclined to take serious risks.
So, my experience here is both positive and negative – because I have not yet risked a negative experience.
(Hey employers! If you put me in positions of power with appropriate compensation, I’ll be able to do insider activism without fear of discrimination – pretty cool! Please do read the consequences section later on though, or I might have to do some insider activism and then this blog is just a big waste of time for both of us.)
When I provided feedback on an accessibility analysis I found somewhat lacking, it was well received but didn’t translate into satisfactory change.
While I understood why it couldn’t translate, it felt like all the awkwardness of pointing out gaps in others’ work was for nothing, and I knew my colleagues felt bad for not being able to fully use my contributions.
Personal experiences aside, those who benefit from insider activism often don’t understand the level of emotional labour required or the power dynamics at play – meaning insider activism and its emotional labour goes unacknowledged, uncredited, and uncompensated.
On top of that, insider activism blurs boundaries in ways mainstream activism doesn’t – introducing a million little nuances and consequences for personal lives and emotional wellbeing.
Sounds bad right? Just wait until we get to the consequences section!!
While many privileged people in positions of power (5x fast) claim to appreciate insider activism, they completely fail to acknowledge that an inequity has to exist within their spaces or systems for insider activism to be necessary.
Yep, if insider activism has happened in one of your spaces – you need to understand that you were complicit in letting discrimination or inequity happen, and failed to recognize this yourself.
In short, it’s a you problem!
No one likes bringing up uncomfortable topics – people get weird, things get awkward, you know how it goes.
But insider activism occurs when a marginalized person has to address the inequity or discrimination that they are facing, in front of people who are complicit or active in creating that inequity or discrimination.
And while people are so quick to call us brave or upstanding for doing insider activism, they don’t understand that more often than not – we do not have a choice!
We. Do. Not. Have. A. Choice.
If we are risking our academic standing, our social reputation, our careers and livelihoods – it’s for good reason. It is because we do not have a choice. It is because we can no longer stay silent and just take the discrimination.
I don’t want to be called a changemaker. A social innovator. An insider activist. I want spaces to already be safe. I want to feel welcomed and included without having to fight for it.
And when I do speak up? When I do take these risks? When I address a major systemic issue that everyone else ignored?
I want recognition. I want compensation. And I want actual change.
Now, back to the main question at hand: is Carly Fox an actual human person? Let’s discuss.
Sometimes insider activism is a choice I make, and other times it is thrust upon me as boundaries between work, class, and my social life all fall apart.
Regardless, once I start insider activism in a space, it permanently – and irreversibly – changes how people perceive me, and how they interact with me.
Let’s start with perceptions – another weird “people thing” I don’t really get.
For me, insider activism is tied up in my personal identity and experiences – so whoever didn’t somehow know I’m disabled (sometimes it feels like I’ve cancelled out my able-passing privilege with how open I am about my disability) now knows.
This can open me up to a whole lot of ableism I could have otherwise avoided.
More often, people know I’m disabled and they know I’m vocal about it.
As I’m expected to do insider activism in literally all of my spaces all of the time (again, is Carly Fox an actual human person?) I can’t blame people who think I only talk about disability, I only care about disability, I am my disability, and I hate absolutely everyone who has ever said a single ableist thing.
But hear me out – when your record keeps skipping, you don’t blame the record – you figure out what’s wrong with the record player.
If I sound like I only care about disability, ask why I’m still having to talk about it all the time, ask why people keep asking me to talk about it.
Believe me, I have a lot of other cool stuff going on (you ever solo hike and stand down a wild turkey?) and would appreciate the emotional and intellectual break.
Perceptions influence interactions – this is one “people thing” I understand quite well. Reality is subjective, nothing is real, wash, rinse, repeat.
So, when I am always doing insider activism in all of my circles and spaces, and people come to expect this of me – they’re going to anticipate it or shut it out.
When people positively respond to my activism, they’re often really eager to learn more – and that’s really exciting and some great allyship!
They also often know that I will continue to call out inaccessibility and ableism, so there’s this weird accountability dynamic where they’re looking to me for validation or are afraid of upsetting me.
As you can hopefully imagine, that’s super isolating and weird for me – especially when it comes from my peers!
Is Carly Fox a regular human person?
And of course, when people negatively respond to my activism they generally stop interacting with me.
And this isn’t great for two reasons, because it means spaces and systems continue to be ableist, and it doesn’t give me a chance to understand why they negatively responded and how I can improve and better relate to them.
Of course, these interactions usually manifest in gossip and what the kids call “shit-talking”. Not too long ago, my friend told me two girls were openly shit-talking me on campus.
But hey, as long as disability is on the agenda, right?
I try not to take it personally, I really do.
I know that not a lot of people are doing what I’m doing (but those that do are so cool and I owe so much to them!!), and above all I know ableism is so pervasive and unaddressed.
I don’t blame people who negatively respond, I just wish they’d give me a chance and open their minds. Or at least give some constructive feedback.
And when the impacts on interacts aren’t obvious, they are subtle. And subtly, for me, is a terrible thing.
Because I will convince myself I’m crazy (which I already am anyways) and will get caught up in trying to figure out what is real, and what is imagined (PTSD does some funky things to your brain folks.)
When people expect me to do insider activism, they’ll either try to avoid disability entirely to avoid pissing me off, or they will try to appease me, to also not piss me off.
Is Carly Fox a regular human person?
I obviously can’t speak much on the avoidance, because it’s, well, avoided.
But I can speak on the appeasement, which is, by far, the #1 culprit of making me feel like not a regular human.
When your peers tell you about event venue accessibility features unprompted, or call you “miss advocacy”, or say during an in-class presentation that they’ve prepared for your disability questions – it’s weird! It is so weird!
It’s more impactful when it comes from my peers, but so much weirder when it comes from my professors or supervisors.
Now, don’t get me wrong – I am so grateful people are listening and learning and acting. It is all I could ever ask!
But I hope it’s not too much to ask that we find a way to do this in a way that can treat me like something at least resembling a regular human person.
Balancing the importance of recognition with the fact that any recognition makes me want to curl up in a ball or just go live in a cave is probably going to be a forever thing.
Showbiz, I guess.
And for the worst part of the subtle interaction shifts – once you start insider activism and it becomes expected of you, you can be boiled down to this one-dimensional person with only one identity factor.
You aren’t like everyone else, and they don’t want you to be.
The thing about disability is that everyone non-disabled don’t understand their proximity to disability until they are disabled.
They don’t want to see you as a peer, because then they’ll realize that disability is everywhere – and so is ableism.
It’s a lot, and I don’t blame them.
Now that we’ve explored some of my experiences with insider activism and how it impacts me in all aspects of my life, let’s get into the wider, infinitely more consequential, y’know, consequences.
(I have been writing this blog for over two hours now, so please let that sentence happen.)
When we ignore the emotional labour behind insider activism and the power imbalances and systemic oppression rendering it necessary, we force marginalized people to fix the discrimination they’re facing – at a major power imbalance, at extreme emotional cost, with serious potential consequences.
And, we don’t pay them for this work.
Most of the time, we don’t even recognize them for it!
Now, for the big argument: if you are relying on marginalized people to fix acute symptoms of the discrimination and inequity you created, you are perpetuating inequity and discrimination!
You are not a good person for “letting” insider activism happen. You most likely did not provide a safe enough environment for the activist to feel safe doing insider activism. This is no one’s first choice.
That’s the main argument here – insider activism will not fix systemic ableism, and expecting disabled people to do that without power, recognition, or compensation only perpetuates it.
It also prevents more disabled people from entering these spaces (especially in paid positions folks!), and it prevents accountability for those complicit in perpetuating this inequality.
Relying on insider activism also often tokenizes the activist, making them a monolith for the entire disability community and ignoring intersecting systems of oppression.
And now, disclaimers.
For the appeasers, the employers, the professors, the peers, anyone and everyone – no one is perfect, and all I ask is that you try your best.
Maybe you learned from this blog that what you thought was an appropriate reaction to my activism was not as appropriate as you thought, maybe it made me feel like not a regular human person – it’s okay!
We are all learning and growing together – own up to it and let’s figure out how to move forward from this together.
You. Are. Allowed. To. Make. Mistakes.
For the insider activists, if you can, please keep doing what you are doing.
This hard work today creates a better tomorrow for all of us.
We should not be in these positions, but we are.
And we unfortunately are going to have to continue hauling ass so that one day, someone somewhere will not have to.
So that one day, we’ll at least be compensated and credited for our work.
But if you are tired, if you do not feel like a regular human person, if you are frustrated or feeling unheard or are burnt out – please, if you can, take a break.
It is all too easy to fall prey to the feeling that the fate of the entire disability rights movement falls solely on our shoulders – that every second not advocating is another disabled person discriminated against, another inaccessible program, another ableist policy.
It might be! Who am I to say it’s not?
But if you’re like me, you can take comfort knowing that you are not alone.
You are not the only one fighting, advocating, challenging, and changing.
We are in this together, and we are a community.
As long as we keep this in mind, tomorrow feels easier. And maybe it will be.
When I first got into disability advocacy, I had only been disabled for a year or two – meaning I had spent the majority of my life as non-disabled. This really influenced how I approached advocacy, and how I was able to relate to non-disabled people in a way that made disability more approachable and relatable.
While the majority of my life has still been spent as non-disabled (and I will not get to the tipping point until 36!), I’ve found that my approach to advocacy has shifted as I’ve embraced my disabled identity and crip culture over the last few years. In short, I began to write for myself and my peers instead of writing for non-disabled people.
But the thing is – I know what it’s like to be disabled. My disabled peers know what it’s like to be disabled. Non-disabled people don’t know what it’s like to be disabled – yet.
And while I believe raising disability awareness and sharing my experiences can help non-disabled people start to understand disability and practice disability allyship – it can kinda be exhausting and overwhelming trying to boil down such a complex and personal experience into something understandable and palatable.
Being a disability advocate is a balancing act between holding the non-disabled gaze by making disability approachable and understandable, and being honest about my lived experience and being accountable to my peers.
My work does not exist in a bubble – if I sugar coat my experiences, other disabled people will be dismissed or gaslit. If I’m too honest about how my disability impacts me, or too nuanced in explaining disability, or try to approach complex or controversial topics – the non-disabled gaze drops.
And that’s a lot of responsibility to hold, especially at twenty!
While I always do my disclaimers that I can only speak to my personal lived experience and that I could never represent every single disabled person within the disability community, I’m constantly mindful that some people choose to ignore this and take my words as The Disabled Experience. That some people think speaking to me checks their Diversity Equity Inclusivity box, or counts as a formal consultation with the disability community. That supporting my advocacy work means supporting the entire disability community, and that supporting me is enough to understand what disability is.
And there I go, dropping the non-disabled gaze again.
Before I was disabled, and even now – I wanted to be told disability is easy. Easy to live with, easy to understand, easy to talk about. But I wasn’t told this, because disability isn’t easy.
While I was loosely aware of disability, I didn’t have a great idea of what it meant. I thought of people in wheelchairs, and people with absolutely no vision or no hearing. I thought the only accommodations were service dogs, wheelchair ramps, and accessible stalls.
When my twin was diagnosed with arthritis two years before me, disability stared me down for the first time. It was complex, and overwhelming, and upsetting, and I didn’t like it at all. I didn’t understand what an autoimmune disorder was, or why my twin was always sick, or why she wasn’t going to school.
Instead of trying to understand, I shut down. I shut down because it was all too much – it was too overwhelming trying to understand that I didn’t even know where to start! I didn’t want to ask my twin about it – it felt too private, and I felt too awkward. I tried googling her disease, but everything that came up was in medical jargon. No one seemed to be talking about the human impacts, no one seemed to be having any human impacts at all.
So, if I still have the non-disabled gaze, please know that I felt the same way you might feel now. Like disability is too much, and that trying to understand it is too hard. But I, and countless other advocates, are doing our best to help you understand.
And all I can possibly ask of you is that you do your best too.
No one is asking you to be perfect – to be an expert on disability, to always know what to say to disabled people, to see inaccessibility all around you.
We’re just asking you to try – and I know that’s easier said than done.
It’s hard knowing where to start, where to go next, and if you’re on the right track.
It’s hard consuming all this complex information, sometimes with conflicting perspectives and definitions.
And it’s hard to understand that disability is not inherently negative, because we were raised our whole lives being told it was.
I know it’s hard, you know it’s hard, I’ve told you it’s hard, you probably agree it’s hard. Glad we’re on the same page. But we’re gonna have to keep going – so that you didn’t read this blog for nothing, and so that I didn’t write it for nothing.
Here are some tips for those new to disability allyship.
I’ve offered some of these across the blog, across my socials, and within my circles – but I’ll offer these and more here for you to check out.
And yes, these are catered towards non-disabled allies – the cross-disability allyship blog will have to wait another day, but these tips can work for disabled people too.
Step #1: Ask yourself, “what is disability? what does disability mean to me?”
Before you start, you have to understand where you’re starting from. When we explore what we already know and why we know it, we can start to find gaps in our understanding our even some biases to unpack.
Step #2: Ask yourself, “am I disabled? could I become disabled? is someone close to me disabled?”
It’s easier to understand something when we can place ourselves in it or near it. We all have some relationship to disability – even if we haven’t discovered it yet! A lot of disabled people don’t even know they’re disabled (read my blog on identifying as disabled for help with this) And a lot of non-disabled people don’t realize there are already disabled people in their lives and spaces,
Step #3: Find out what you want to know about disability – the basics, how it applies to your interests, how it impacts people, the culture – and go from there.
Everyone gets into disability allyship for different reasons – ask yourself why you’re here and what you want to learn, but also ask yourself why you feel this way. Do you want to make your spaces more inclusive? Do you think crip culture is cool (shocker: this is okay to think! it’s really cool!)? When we ask ourselves why we want to know more, we can keep unpacking our pre-existing thoughts and feelings on disability, which can help us learn better and be better allies.
Step #4: Always keep learning – and keep learning from all types of disabled people.
Like every other kind of allyship practice, it’s an ongoing commitment! There will always be something new to learn, or a new event or law to learn about. There’s also a lot of diversity within the disability community – to better understand disability, you need to understand how it affects all kinds of people.
Remember, all we ask is that you try your best. This will probably be some confusing, thought-provoking work – work through it, and I promise it will be worth it. one day you’ll appreciate it. Hopefully, you’ll want to keep learning more about disability, the disability community, and disability allyship.
Start Here
Crip Camp – Sundance Award Winner and Oscar Nominee, Crip Camp details the American Disability Rights Revolution and its origins at Camp Jened. A moving, true, and authentic look at both crip culture and disability rights movements.
Demystifying Disability by Emily Ladau – An approachable, beginner-friendly book and guide to disability advocacy
The Disability Visibility Podcast by Alice Wong – 100 episodes increasing disability visibility, as part of the larger Disability Visibility Project. This is a great podcast for people interested in crip culture, disability rights, and intersectionality.
Find disability advocates in your area through social media, events and conferences, and by-and-for disability organizations (read more on the importance of by-and-for groups here!)
