Tag Archives: advocacy

Nothing About Us

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.

The Body Image Blog!

It is finally time for the body image blog! 

I’ve been wanting to write this one for such a long time as it’s been such a present symptom for so many of my disabilities throughout my life, but a recent rise in negative body image stemming from daylight savings time (it’s a thing, I promise!) really pushed me to write it now. 

While body image issues can feel especially vulnerable to talk about, I’ve learned that it’s such a common shared experience for so many people – we’ve just convinced ourselves we’re alone. 

So, here’s me sharing way too much about my personal life to show anyone out there struggling that they aren’t alone.

As always, some disclaimers. 

I won’t share what foods I ate, what drinks I drank, how much I weighed, etc. If you also share your experiences with eating disorders/disordered eating/body image, I’d like to ask you to do the same – let’s not share dangerous information that can encourage others to repeat what we went through. 

I also want to stress that weight is not as central to eating disorders/disordered eating as most people think. Too many of us have heard we aren’t skinny enough to get treatment for eating disorders, or that we’re too fat to have one at all – but eating disorders are a type of mental illness, not some adjective to describe the physical state of our bodies. 

And above all, I’ve tried my best to ensure this blog doesn’t feed into a fatphobic narrative. Eating disorders often prey on the fatphobia pushed on us by our diet culture-obsessed society, and are characterized by obsessive and irrational thoughts that portray gaining weight as the worst thing that can happen. Again, irrational. 

It’s also important to remember that fat people can also have eating disorders, and have very different experiences with treatment, rehabilitation, and society because of how they look. 

Like always, I’m speaking from lived experience. Like all mental illnesses, eating disorders can be incredibly personal. 

If your experience was wildly different than mine and you want to share it, please go for it! If my experience resonated with yours, please go for it too! 

I’m learning that by being able to identify past emotions and discuss past experiences, I’m better able to heal – and I hope this blog can provide you with a space to heal as well.

Alright, let’s get into some extremely personal stuff!! 

I grew up around diet culture as most people – especially women and girls – do. I also grew up in the time of weight watchers, calorie counting in health class, and the start of social media – which was pretty much a disaster waiting to happen. 

Like most people, I have one memory that sticks out as the start of my self-awareness of my body and what society expected it to look like. 

During my first ever musical at age 12, someone said my dress gave me a “muffin top” – whatever the hell that was. I

t’s worth noting I had a very ridiculous hat on and was dressed up like a flower, so looking back this 14 year old girl was definitely going through something if that’s what she noticed.

A year later, I turned 13 and discovered Tumblr. (You know exactly where this is going!) 

While I occasionally scrolled through some concerning eating disorder hashtags out of curiosity, I never grew obsessed with those images – I knew they were unhealthy, I knew the posters were mentally unwell, I knew I didn’t want to be like that. 

What did the most damage was the photos on mainstream accounts and hashtags that featured exclusively skinny women – at least on the eating disorder hashtags, I was able to identify dangerous messaging. 

With mainstream social media use, diet culture is pushed onto us in much more subtle ways – and while Tumblr is dead to me, Instagram and Pinterest seem to have a field day setting up the algorithm as if to get me to relapse. 

Like a lot of 13 year olds, I was dealing with severe depression and anxiety at this time. 

I would stay home from school and doom scroll on Tumblr way before we even knew what doom scrolling was. And, like a lot of 13 year olds with mental illness, I had self-harming tendencies, and at this time it manifested in disordered eating. 

This was all magnified by my environment: I had left my last elementary school to pursue the now defunct extended french immersion program in grade 7 (RIP), where I swear the school board’s most mentally ill students accumulated. Everyone was severely mentally ill, and having an eating disorder genuinely made me feel like I belonged. 

I’m all for quality french education and bilingualism, but all things considered maybe the program’s cancellation wasn’t entirely negative…

When I was 14, I returned to my previous elementary school for grade 8 which sparked my first go at recovery. 

I was back with my support system, my friends, my favourite teachers, my beloved music program. Here, I didn’t need an eating disorder to belong. I just did. 

I began to understand which foods were “eating disorder foods” (foods encouraging pro-eating disorder thoughts) and avoided them like the plague, and tried harder to start the day with a solid breakfast. 

7 years later, I’ve reincorporated some of the foods back into my life as part of recovery (no bad foods, just bad thoughts) and a balanced lifestyle, and breakfast remains my favourite meal of the day. 

I also began to find recovery channels on Tumblr and mental health awareness accounts on Instagram – which were only just popping up at the time.

And then I started high school! 

Maybe it was the ADHD kicking in (we’re getting there), but I never felt insecure or out of place. I was excited for a new experience with new people, and always assumed everyone else was just figuring life out as they go (news flash: we all still are!) 

Grade 9 passed in the ways grade 9 does, and then Grade 10 hit. (If you’ve been following the blog, you know this is an “oh shit” moment).

While the trauma that kickstarted my PTSD happened around this time, we’ll revisit the PTSD-body image relationship at age 17 when I realized what had happened – right now, let’s focus on ADHD. 

Disordered eating is very common in people with ADHD – whether it’s because you’re hyperactive and forgot to eat because you were busy doing something else (hi!) or because your executive dysfunction keeps you from getting something to eat. 

While it can be an incredibly harmful symptom, it’s not often discussed in ADHD discussions – which absolutely sucks, especially for women and girls with ADHD who are disproportionately impacted by this and who face additional barriers to diagnosis. 

For me, at 15, this ADHD-disordered eating relationship was a byproduct of an overpacked schedule with no time for breakfast or lunch – and finding the time to eat is still something I struggle with to this day!

Alright that’s the ADHD, cue the arthritis! 

About a year later, I was diagnosed with juvenile idiopathic arthritis and a few months later I started methotrexate – which for autoimmune disorder treatment is pretty much just micro-dosing chemotherapy. 

But interestingly enough, losing weight from the chemo never triggered those old thoughts – I had no control over my weight, and had absolutely no interest in glorifying the body that was actively trying to kill me. 

It’s a weird, weird relationship, but even weirder was how many unsolicited and unwelcome compliments I got on my body from strangers – while I was on chemotherapy! While my body was actively trying to kill me! 

Cue societal alarm bells!

And then, another year later, I realized I had PTSD. (It was a busy few years, I know!) 

Like a lot of people with PTSD, I didn’t remember what had happened to me for a few years, and when I did I was able to understand all of its terrible symptoms. 

Most (ir)relevant to body image is the depersonalization I face(d) – if you’ve ever seen a dog bark at itself in the mirror, know I’m the dog. 

I just did not recognize my body, my face, my eyes, anything. Add in the chemo changes and you pretty much have a ghost! 

PTSD recovery was and is tough, but that’s for another day.

I have to skip the year I moved out for university during the COVID-19 pandemic to protect an identity who really threatened my recovery – wishing that person growth and recovery, wherever they are. 

A year later, the situation resolved itself and I was 20. 

The PTSD was subsiding in severity, but the ADHD continued to keep me going like a hamster on a wheel that doesn’t know when to stop. 

I didn’t binge anymore, but I did often forget to eat meals because I was caught up in other tasks. When this happened, I felt guilty, like I was letting my 13 year old self who fought so hard for recovery down. 

But I was compassionate to myself, ate what I wanted in the moment when I remembered to eat, and started every day with a clean slate. Because that’s really the best we can do sometimes. 

As I entered my 20s, the clean girl aesthetic caught on. 

As someone who finds peace in having her shit together, I was an ideal target audience. 

The only issue was the underlying disordered eating being promoted – only eating healthy homemade meals and working out all the time isn’t as healthy as the clean girl aesthetic makes out. 

Luckily, the anti-diet culture wave hit social media soon after, and I found registered dietician Dr Abbey Sharp, who has single handedly helped me pivot my relationship to food. 

Dr Sharp shows the start of videos subtly promoting disordered eating, and identifies the issues while providing better alternatives that create a kinder and more sustainable relationship with food. She also manages to do all this without villainizing the original creators or any foods, which is so rare and appreciated. 

I’m solidly in my 20s now at 21, and am learning how to navigate and accept the changes my age brings to my body. People often say you can’t chase the body you had in high school, and I have no desire to – again, I was microdosing chemo. 

But regardless, it is difficult accepting that my body will change when for so long that was an overwhelming fear of mine. 

So far, I’ve been finding what feels good for me – a balanced, albeit super chaotic lifestyle with time carved out for yoga and homemade meals. This will change as I grow older, as will my body. 

And whenever this growth scares me or triggers old thoughts, I think back to the 16 year-old on chemo who felt like a zombie. And I know she would be so proud to see me now.

This is the part where I say something ridiculously profound that stops every eating disorder in its tracks and cures everyone of everything ever. Kidding, of course. 

What I can say is that recovery is personal – we all have different reasons to fight for it, different people we want to show up for, and different things we want to do with our lives.

Find what makes your life worth living fully – because there is always something for everyone – and go from there. Find what feels good for you. 

And know that we are operating under an incredibly dangerous social narrative that prioritizes looks over wellbeing – every day we choose to love ourselves and commit to caring for us and others, we’re working to make the world a safer, better place for the next generation.

Alright! Another blog down, another excessive amount of personal information shared, another awkward but supportive conversation on the horizon! See you next time.

2022 In Review

I’m back!

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 also attended the Global Disability Youth Summit on behalf on NEADS and CCD for a solid consecutive 24 hours.

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. 

While this was not my very first paid disability advocacy gig, it was my first after launching the blog. You can watch the live and read my accompanying blog on self-advocacy here.

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. 

And, on top of it all, I found out I was selected as a Youth Delegate for Canada’s official Delegation to the 15th Conference of State Parties to the United Nations Convention on the Rights of Persons with Disabilities.

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!

Insider Activism and Emotional Labour: Is Carly Fox a Regular Human Person?

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.

Meeting the Non-Disabled Gaze

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!)

Back to School 2022: What Happened?

This is going to be another one of my from-the-heart, write as you go blogs.

The last few days, I’ve been fighting through tears and a choked up throat as I try to cope with how ableist, inaccessible, and exclusionary Fall 2022 has already been. Dealing with the massive rollback of accessibility and accommodations on-campus was already enough (if not more than enough!) but to watch my peers – my friends – host non-masked, inaccessible superspreader events in the middle of an ongoing global pandemic has honestly made me feel as though people want me dead.

As though people have pretended to care about disability rights, disability justice, accessibility, myself – just to appease me. Just to shut me up. Just to get me off their backs. Just to wait me out. 

Because when you have an autoimmune disorder in the middle of a global pandemic and people care more about awkward icebreakers with strangers than you living to – at the very least – complete your degree – wouldn’t you feel like people want you dead too?

I feel like I’ve done everything short of begging on my hands and knees for people to care and remember that disabled students still exist. Spoiler: we still exist!

Even though so many of us have had to drop out of school, even though so many of us have died. And if I felt like begging would work, I would have done it by now. 

I have created educational content on how to host hybrid, accessible events. I have answered ignorant DMs asking me to do people’s work for them – for no compensation and no credit. I have talked to the press. I have offered free anti-ableism and accessibility training to student groups. I have offered accessibility insights for free.

I have offered my time, energy, sanity, wellbeing – everything I have. I have bit my tongue and swallowed my pride. All because I genuinely hoped – and still naively hope – that I can make a difference. Not globally, not nationally (alone), but just on my university’s campus. Just among my peers. Just among people I thought I could consider my friends.

And you may say, “that’s so dramatic”. And I can’t blame you – before I was disabled I genuinely believed “ableism” was overhyped, overplayed, social justice snowflake warrior nonsense that wasn’t real. (I’ve written on it what feels like a billion times.)

But that’s how ableism remains so prevalent and pervasive – it’s how it continues to be excluded from equity diversity inclusion training and allyship campaigns. It’s how disabled people continue to be murdered by their governments around their world, and hidden away from society.

And all I’ve ever asked was for people to try their best!

To listen, to learn, to be allies. I’ve tested my patience trying to unpack microaggressions, I’ve answered ignorant emails asking for free consultations without credit. I’ve put aside my personal life to contribute to something infinitely larger.

I’ve given disability advocacy the best I can – I’m only asking others do their best too. I’ve said disability advocacy is a two-way street, we have to listen and learn to improve. We have to grow together. 

So after all this, after all this work, after all this pain and suffering – I feel like I’m left with nothing. Or better yet, I’m left with 101 week. An overwhelmingly in-person only, unmasked celebration of ableism.

Of ignorance. Of apathy. Of burnout.

I get it – this pandemic has been tough. We have all went through a lot. And most people are not hardwired to cope with so much persistent bad – even existential – news.

But that doesn’t mean we get to give up. It doesn’t mean we get to pretend a pandemic is over. It doesn’t mean we contribute to the massive rollback of accessibility and accommodations on-campus.

We have fought through this for over two years now – and we haven’t fought so hard, and for so long, to give up now.

And let’s remember – from Day 1 of this pandemic it was disabled people most at risk. And of disabled people – poor, black, indigenous, queer, trans, homeless, racialized, disabled people were most at risk.

And it feels like non-disabled people still don’t care! Non-disabled people were relieved we were the ones dying. Non-disabled people thought we weren’t worth saving. Non-disabled people abandoned us. Non-disabled people control our governments, our health agencies, our international organizations. Non-disabled people didn’t just leave us to die, they offered us up all so they didn’t have to wear a mask and social distance.

But during this pandemic, we learned so much about just how accessible the world can be!

Where disabled people used to have to extensively coordinate personal arrangements to have food and medication delivered, food delivery services became the norm.

Where disabled people had to beg to be included in alternative formats, online conferences became the norm.

Where disabled students demanded equitable, accessible access to education just to be denied, fully online schooling became the norm.

In all of these cases, we were denied basic accessibility to essential rights. We have the right to accessible food, to accessible social lives, to accessible education.

And I will not be gaslit into believing I don’t. Into believing it’s not possible. Because this pandemic explicitly showed us that the accommodations we’ve requested have always been possible – non-disabled people just never felt required to act on it. 

And now, after we’ve been shown how accessible the world can be when it benefits non-disabled people – non-disabled people are eagerly returning to the “before times.” While companies and governments claim to “build back better,” accommodations and accessibility are being sidelined – as they always have been.

That’s where we’ve been and where we’re at now. And I’d love to get into where we’re going – but I just don’t know.

I don’t know how else I can beg people to care about the disability community. To undergo the minor inconvenience of wearing a mask to not literally kill other people. I don’t know how to keep advocating as people begin to shut off and shut down.

I feel like I sound like a broken record – but how can I not if people won’t listen to the most basic explanations of ableism and how it manifests. 

Here’s where I’d like us to go: I’d like us to enforce masking again. I’d like us to pay attention to our actively collapsing healthcare system. I’d like us to listen to others and practice empathy and allyship. I’d like disability to be included in “intersectionality” and “building back better.” I’d like to not get COVID again. I’d like to not worry about my disabled friends dying.

I’d like student groups to reach out for anti-ableism training. I’d like organizations to stop asking for my free emotional labour. I’d like my peers and friends to actually care about disability justice and accessibility – not just appeasing me in the short-run.

I’d like us to remember what we’ve lost this pandemic, and what we’ve been fighting for all along. I’d like to come out of this pandemic (whenever that may be) stronger, closer, actually better.

And one last disclaimer before we’re done: I know I am not alone. Disability advocates have been – simply put – hauling ass this pandemic. I’m not the only broken record still spinning on the turntable, even when the room is empty and the dust collects.

Disability rights are slowly (so, slowly) entering the mainstream – and they have been for a very long time! Without the work of past disability advocates, we would’ve been killed off much faster than we’re currently are now.

Disabled people have set clear boundaries and have taken heartbreaking precautions just to stay alive. I’ve been privileged to be mostly surrounded by people who can understand that I’m at risk and need to be cautious. But in an individualistic, ableist society – we feel alone. 

Being disabled in a pandemic is like scuba diving without an oxygen tank.

Every action, every move forward threatens my life. But when I talk to other disabled people, it’s like I can come up for air and breathe again. And I’d much rather be given an oxygen tank than be forced into struggling for the next air pocket.

This feels excessively metaphorical, but I am running out of ways to express a not so rare phenomenon.

Speaking to disabled students across Canada through NEADS has showed me I’m far from alone – which is good for my mental health, but obviously terrible when we grapple with the fact that so many disabled people are fighting the same battles across the board day after day.

While disabled people are about 20% of the world’s population, we need non-disabled people to practice allyship and get us to majority. We need people in power to care, and we need to be put into positions of power. We need to be able to access spaces to change them. And we need to survive this pandemic to change how we respond to the next one.

Mask up. Get your boosters. Host hybrid events. Do your best. Don’t suck.

A Disabled Hiker’s Guide to Gatineau Parc

You know how I say disability and disability pride is different for everyone because disability is so inherently personal? You’re gonna want to keep that in mind for this one! 

To wrap up disability pride month, I chose to solo hike 10km in Gatineau Parc. While a lot of people thought this was a terrible idea on account of my arthritis, fibromyalgia, PTSD, and anxiety (and yes, objectively it was,) I thought it was a fantastic opportunity to honour my disabilities by doing what I love – not spiting them or ignoring them, but incorporating them into something I’ve always loved.  And I’m not the only disabled person who loves hiking – there’s a whole movement of disabled hikers challenging how people perceive disability both on and off the trails!

Before I get into the hike itself, we need to talk about the preparation – one of the most important things about hiking!

Since I was solo hiking and coming back from a pretty lengthy hiking hiatus (hike-atus), I honestly had no clue what to expect – most of the women-specific solo hiking advice I received was “don’t do it,” and no one really makes hiking tips for disabled people (don’t worry, tips on solo and disabled hiking are at the end of this blog!)

Despite the discouraging lack of resources, I planned out my hiking routes in a move very similar to my everyday anxious life and packed my favourite joint braces in my daypack. While preparation is essential for a good hike – once you’re out there you’re pretty much on your own, so it’s best to prepare for everything you can.

Now for an ode to queueing: I arrived 30 minutes early to secure a seat on the NCC’s free shuttle bus to the park and stood the whole time in a queue. As an invisibly disabled person, showing up early helps me secure a seat – except for today – once the bus came a ton of people jumped the queue, and I ended up standing on the bus for over an hour.

As you can imagine, it did not feel great and was not the best start to the day. When you have limited energy and ability, a 1-hour standing bus ride throws everything you planned so carefully out the window – and the people who jumped the queue will never know how they made a disabled girl stand for an hour. So, be nice and queue. 

One bus ride later I arrived at the underwhelming visitor’s centre, which I would rate an “accessible flop” – accessible, but still a flop.

While most of the information there was largely unhelpful, a tasteful kid’s exhibit taught me there were fishers in the park! (For those who don’t know, fishers are like really big weasels with knives for hands that can slice a house cat in half.) Having spent at least an hour googling animal safety tips for black bears and coyotes, this was equal parts terrifying and hilarious – clearly I wasn’t as prepared as I thought, but I’ve been wanting to see a fisher ever since I learned they exist!

Now for the “accessible” in “accessible flop”: the accessible washroom stall had a sink and tilted-down mirror in the stall! I don’t know what kind of accessible stalls we’ve all experienced, but this was my first time seeing a sink in the stall – and it makes a lot of sense!

I left the centre with this message: you might die here, but it’s probably gonna be accessible. Not bad!

I took the shuttle that runs through the parc over to the accessible Champlain lookout, and found myself in what can only be described as a Friday the 13th Biker Gang Rally if motorcycles didn’t have engines. Yep, this place was packed with bikers (for those that don’t know, parts of Gatineau parc are closed off to cars on weekends, so bikes usually have free reign.)

While the “accessible bus stop” wasn’t barrier free, it was accessible, and the lookout’s stone wall was low enough for people in wheelchairs to actually be able to see the view. Not bad!

While Champlain has an accessible lookout, the trails aren’t universally accessible. Some trails are, and that is wonderful, but I can’t deem it reasonable to ask Gatineau Parc to pave over all of their hiking trails.

Some of you may be surprised that I’m saying this, as I seem to have a reputation for not compromising (or at least I used to before the pandemic happened and I got soft.) There’s a lot of nuance when accessibility and the environment intersect – but I will never excuse eco-ableism.

(A quick aside: London Ontario had a community projects contest that pitted accessible swings for children against initiatives like bat houses and private porch parties. And bat houses won. 4 out of 4 accessible swing initiatives did not receive funding. Bat houses. Houses for bats.)

Back to the Champlain trail!

This 20 minute loop was my very first test as a solo hiker – and unsurprisingly, I didn’t ace it. The trail was completely deserted, and while humans are usually the ones pushing me into hypervigilancy, being so alone ironically invoked the same response.

Knowing I was completely alone and any screams would not be heard, naturally I speed walked the hell out of that trail and did a hilarious step-clap type move down the trail to warn nearby animals.

But it wasn’t enough – around 3/4s through the trail, a bush was suspiciously rustle-y. So, like any rational person, I started clapping at the bush. Applauding the bush. Technically, a standing ovation. 

What comes out? A WILD TURKEY.

A. Wild. Turkey.

I was prepared for bears, coyotes, ticks, and fishers – not wild turkeys! And this guy was massive! Luckily, I applauded him offstage (he turkey-walked away), and continued my speed walking.

Once I re-emerged in a more environmentally friendly knock-off Harley Davidson event (the bikers were still hanging out), I sat on the stone wall and asked myself what the hell I was thinking. I realized I was not prepared at all for this solo hike, and decided to skip the longest trail of the day.

That choice lasted for about three minutes before I remembered that the trail has a waterfall.

Completely disregarding the lesson I was probably supposed to learn, I rode the shuttle over to Lauriault and started my next hike – a 1 hour, 15 minute trail (not a loop!) that would take me to the Mackenzie King Estate.

At the start of the trail, I saw an accessible portapotty (and the only portapotty at that site) for the first time and took it as a sign things were looking up. And they were!

I started with the 400m hike to a lookout, where I promised myself I would re-evaluate how I was doing and decide if I wanted to continue with the hike. Having already passed two solo women hikers and a father-daughter duo, this trail felt a lot safer in my PTSD brain. And I was rewarded for my perseverance with a phenomenal appearance by a sapsucker bird – think fluffy woodpecker with black and white stripes.

While this trail was by far the easiest terrain of the three trails I took that day, it definitely kicked my ass the most for reasons I still don’t understand. The Lauriault trail was probably my favourite of the three – it managed to balance my desire for complete nature immersion with my need for people around to at the very least hear my screams in case I was attacked by a bear, wild turkey, coyote, etc. 

Emerging into the Mackenzie King Estate so attractively drenched in sweat (we wanted a hot girl summer, right?), I skipped the main stops to refill my water bottle and scope out their accessible flush toilet stall – a novelty in the middle of nowhere. While paling in comparison to the visitor’s centre, it wasn’t coated in giant bugs – so it really surpassed all expectations of middle-of-nowhere accessible stalls. (I know the bugs have dibs out the outdoors, but still. They don’t need to get that close.)

My final stop of the day was at Pink Lake – Gatineau Parc’s most famous, and most instagrammable spot.

While not actually pink, the Lake is a stellar turquoise and apparently shaped like a heart, which somehow makes people stop and think “wow, I gotta get a picture of me here for instagram.”

Not to be a boomer, but you don’t have cell reception out here for a reason – put the phone down! To stand in front of a biologically unique phenomenon, to see centuries preserved in the lake’s weird waters, and to think “yeah I can hold my own in front of this natural wonder” – be humbled!

And one more thing on my boomer rant – what goes on in someone’s head to make them think they are the exception to the “no swimming rule” that keeps the lake’s chemical balance stable enough to be that beautiful? To touch centuries-old plants, literally frozen in time and weird salt-fresh water, and not feel completely existential?

I’ll blog about this some other time, but I really truly do not understand most people at all most of the time. 

Back to the actual reason we are here – disabled hiking!

This accessible lookout was, as promised, accessible, and while the view was okay, there was a non-accessible lookout with a better view built right on top of it!

And you might say “well, there’s still an accessible lookout, right? so what’s there to be upset about?” 

To which I would reply, “yes, there’s still an accessible lookout and that’s great. but the lookout could’ve been raised and given a ramp so everyone has the same phenomenal view. I’m upset because it sends a message that disabled people need to settle with what they’re given, even when they know it could be better.”

Hope that clears that up, hypothetical person I keep using in my blogs (will this guy ever learn!)

An accessible lookout is also incredibly important for Pink Lake because I swear half of that trail was just stairs! Quick little life hack for you: if you double stairs on the way up, it reduces joint impact and helps you stretch some neglected muscles.

Aside from the stairs, this was obviously the best trail Gatineau Parc had to offer. While I did have to give unimpressed stares to gaggles of instragrammers to access the lookouts scattered throughout the trail, they had gorgeous views.

My favourite lookout was actually a collection of rocks on a cliff’s edge – and I unapologetically sat my ass down there for quite some time!

I sat, I breathed, I drank water, and I was present! Most of my favourite hiking moments are during rest stops – when you check in with your body and realize how far you’ve come, and how far there still is to go. You listen to what your body needs and act on it. And you really take in the view.

So, while I knew it would make an excellent instagram backdrop, I did not feel guilty taking up space and time on my little rock. (I’m not a complete monster either, I took photos for a few groups – group photos of people actually here for hiking are precious and I will always take them!)

While a lot of people know that walking is great for arthritis, a lot of people were shocked I chose to and could hike 10km with arthritis!

I can understand where this comes from, but non-extreme hiking really is just walking with more variety. And because my disabilities are all fighting it out to see who is the most annoying, arthritis isn’t the only one interfering with how I move – my ADHD likes to get mad at me for doing repetitive movements, which can make walking on flat surfaces somehow really difficult!

The variety in hiking makes adjusting my approach natural, and gives my brain plenty of other things to do – like stress about bears. And unlike walking, it’s way more normalized in hiking to listen to your body and take care of your needs! 

While people see walking as leisurely, hiking is somehow an extreme sport, and everything from drinking water to stopping to tie your shoes feels less anxiety-inducing. So, take a second to unpack why you think someone with arthritis can walk but not hike, and try to apply that to all different types of activities!

Hopefully, if I’ve been writing right and you’ve been listening enough, you’ll get to a takeaway something like “disabled people get to determine their personal limits and goals the same as everyone else.”

One of the reasons I love hiking so much is because I love pushing my body to its limits – and I loved doing this even before I was disabled!

I can’t explain why I love it exactly, but there’s something about challenging yourself and pushing yourself to your limits that’s very rewarding mentally and physically.

I did it with dancing and singing when I did musical theatre, so to be able to apply this mentality to something that doesn’t put me at an increased risk for a PTSD meltdown was very refreshing!

I think a lot of people with disabilities know what it’s like to be pushed to our limits – whether by ourselves or others – so to do that on my own terms felt empowering and energizing. 

There’s a lot of parallels between everyday disabled life and non-disabled hiking.

We’ll start with my personal favourite: pacing yourself and knowing when to take breaks. A lot of non-disabled hikers know they need to pace themselves and take frequent breaks to rest and replenish, the same way a lot of chronically ill people take preventive measures to prevent disease flare ups, or the same way we try to prevent burnout.

Hiking culture, in its most positive form, is about listening to your body and honouring it – not being ashamed or embarrassed to take what you need to feel and be your best. 

Other parallels include continuing on a hike despite injury – knowing you shouldn’t do more damage but needing to get to safety or complete a milestone, using walking sticks – literally a mobility aid, and intensely preparing for a hike the same way disabled people often have to prepare for social outings.

Before I let you go, a few tips on disabled and solo hiking.

#1: Never go down a random route/do your research!

Never go into a hike unprepared – you need to know how long and challenging the trail is to determine how to best approach it (think pace and what to pack.)

If you don’t know what you’re getting yourself into, you’ll tire yourself out, run out of water, get eaten by a bear, you name it!

For disabled people, this probably seems obvious – so much of our lives have to be planned out to the smallest detail so we aren’t over-exerting ourselves and doing damage.

#2: Listen to your body!

One of my favourite things about hiking is that it forces you to account for your ability and work with it.

If you try to ignore your low energy levels or injury or bad joint, you’ll end up having to either complete the trail or walk back the way you came.

Trying to ignore your disability only results in more pain – embrace it, and you’ll have a way better time.

#3: Be aware of your surroundings!

While I usually say this and mean creepy men following you, this time I mean bears (and also creepy men following you.)

We can all benefit from doing quick area checks, stopping to listen for noises, making noise to scare away others, etc. And when you’re aware of your surroundings, you can benefit – like when I saw that sapsucker on my hike! 

#4: Pack what you need!

This doesn’t mean pack less, it means pack more.

Pack your joint braces, medication, emergency stuff – extra weight might suck, but it usually means you’re carrying something that could save your life.

You never second guess packing a full water bottle – you know what your body needs, so extend that love to your disabilities.

#5: Prepare and share!

Fully plan out your route and itinerary, and share it with your family, partner, roommate, etc – I even went so far as to take a picture of what I wore day of in case we needed an accurate description and missing person photo.

While it might seem like overkill, it’s always better to be safe than sorry – especially when solo hiking. Don’t forget to account for possible delays, identify your closest way to contact emergency services, and research the trails for more information on safety hazards!

And there you have it! We’re packing in, packing out (hiking reference to not littering,) and packing up disability pride month.

Hopefully, we’ll have more disabled hiking content – if not, please settle for just disabled content.

Disabled, disabled, disabled.

A photo of the waterfall on Lauriault Trail at Gatineau Parc
The waterfall that made me immediately disregard my life lesson.
A selfie of Carly Fox standing in front of the waterfall, wearing a hiking buff and smiling.
The only hiking selfie from the trip – hiking buff gifted from my late Aunt Ginny.
A photo of Pink Lake at Gatineau Parc - a turquoise lake surrounded by large trees.
A hypocritical photo I took of Pink Lake.

The Burnout Blog

June was an absolutely packed month – I launched an advocacy instagram, re-launched my TikTok, made some infographics, did a ton of press stuff, and attended the 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities – but the blog was undeniably neglected, so blog-first fans please accept my sincere apologies. While I believe social media and external press work is super important, the blog became a blog for a reason – there’s just so much going on in disability rights that needs to be shared, boosted, and celebrated. After a month away from blogging (and what a month!) there’s so many topics demanding my attention – but I think now is an excellent time for the burnout blog. 

The most ironic part of all this? Writing the burnout blog is probably going to push me closer to burnout – c’est la vie.

Quick little disclaimer, as is custom: Burnout still isn’t very well understood, and lord knows I definitely don’t know enough about it myself, so please take this blog as it is – a reflection of my lived experience. 

While I’ve always had an affinity for burnout, I’ve only recently realized just how interconnected burnout and ADHD are. I’ve always prided myself on being the “do-it-all” girl: knowing everyone, doing everything, being everywhere – obviously, this is not healthy or sustainable (but god is it fun!) And because I’m so late to the game in ADHD counselling, I just assumed I had a stellar work ethic or internal drive (maybe I do, maybe I don’t, probably not the point I need to make right now.)

One of the ways ADHD manifests in me is almost like a motor: I’m constantly moving on to the next task, idea, project, you name it.  I compare my ADHD motor to nerve blockers (which, for good reason, I have not been put on for fibromyalgia) – because of it, I’m able to do a lot more, but I’m unable to identify the damage it causes until it’s too late. Take the ADHD motor and add my current need for multitasking and packed routines, and burnout can feel inevitable (spoiler: it is not!)

When I first realized I was burning out around the second semester of second year, I took the “work smarter, not harder” approach – and I really thought I was doing something! I tried all different kinds of scheduling tips, methods to analyze information faster, and drilled Muse’s “Supermassive Black Hole” into my skull on repeat (Spotify Wrapped 2022 better pull through!) Shockingly, this approach didn’t work – because I learned to do more in less time, I started to take on more (hello, Carly Fox Disability Advocacy predecessor!)

Still aware of my proximity to burning out, I turned to self-care – or more accurately, attempting to be 100% perfect at self-care (you already know where this is going.) I drank tea, did yoga, read mental health magazines, watched my breathing, listened to frequencies, and meal prepped. And while all of this was great, it was unhealthy! You’re gonna ask, “Carly, how is that unhealthy? That’s pretty much a top 10 list of healthy activities.” To which I’ll reply “Because I made it unhealthy!”

I made self-care unhealthy by being relentless at it, forcing myself into a very intense self-care regime and tuning out what my body actually needs. One night, I put the mental health magazine down to watch Netflix and realized – self-care isn’t just “healthy” activities, it’s about balance and listening to your internal signals. As it turns out, I was just forcing myself into a new type of productivity and overwhelming myself with new tasks in the name of burnout prevention.

My current approach, though clearly imperfect based on my present mental state, revolves around mindfulness. Especially when you have ADHD, PTSD, and GAD, you can do a lot without even realizing you’re doing it. When I remember to breathe and be present, it can feel like snapping out of a blackout period or a coma. I realize that I’m eating too fast or not at all, that I’m not breathing enough, that I’m not actually doing the work I’m supposed to. When I’m in Motor Mode (as I will now call it), it’s like I’m doing everything everywhere all at once (another side note – watch that movie, incredible.) And not being truly conscious or aware most of the time is not my preferred way of living! Just being conscious of how my brain and body works allows me to identify unhealthy behaviours and habits, and work towards building safer routines and processes.

In today’s society, burnout feels dangerously inevitable – and even glorified. Hustle culture reigns as we pretend working three+ jobs is healthy, desirable, or even part of progress. We are expected, from a very young age, to be accomplished, busy, always progressing towards the next goal. We find ourselves in a dangerous pattern of always wanting more – more money, more recognition, more material items, more fame. I find myself saying “once I reach x position or x pay I’ll calm down”, but I’ve realized that once I do, I’ll just want the next step as soon as possible. And when all you can think about is that next raise or promotion or event booking or award, you don’t really stop and appreciate the life around you. And I don’t think my life has ever been better – so to possibly throw all of that away just to get up one more step in the ladder feels like an absolutely terrible deal. 

A lot of burnout risk factors are structurally and systemically determined – we’re operating in systems of oppression and profit that see us as inputs before human beings. But by being aware of the dangerous behaviours harmful systems normalize, we can address them and advocate for change. We can understand that burnout is not inevitable or desirable, but preventable!

For me, the best things I’ve done so far to cope with burnout are determining my non-negotiables, saying no and asking for help, and working on my intuition. 

Learning about non-negotiables has been such a game changer! Essentially, you determine what 100% has to stay in your life – think sleeping, eating, being with family and friends. Then, you determine how much of these non-negotiables you need and carve out the appropriate amount of time. This can be an excellent way to re-examine how you value your time, resources, health, and social life. It can also make you feel more confident in advocating for your needs and setting boundaries.

Saying no is so much easier said than done – but it’s truly an essential skill. To start saying no, you have to start saying yes to yourself – acknowledge you are a human with human limits! You aren’t a machine – you can’t work around the clock, you can’t work at one rapid pace, and you can’t ignore your basic human needs. Once you understand that you are limited in your capacity, extend that compassion to others – shockingly, those around you might also be humans with human stuff going on. And when you extend that compassion, it’s going to create a more empowering environment where others feel safe to set boundaries, help each other out when possible, and acknowledge that, they too, are humans. Groundbreaking stuff, I know. 

An essential part of recognizing you are a human is saying no and delegating. If you’re getting too many tasks at work, delegate or ask for help and call it emotional intelligence, collaboration, or leadership skills. If you’re too overwhelmed with volunteering or community work, build up the team around you by mentoring, allowing younger members to shadow you, and building relationships with others. If it’s with family and friends (the hardest things to say no to!), exercise boundaries where possible and safe – if these people love you as much as you love them, they’ll support you in safeguarding your wellbeing. 

Of course, a disclaimer: Sometimes, we aren’t in a position to say no – especially when we work for a non-livable wage, have dependent friends or family members, or feel desperately needed by our community. As a white woman with stable employment and support systems, I recognize being able to say no is a privilege that largely stems from how I benefit from oppressive systems.

So, there’s your burnout blog. Not comprehensive, but authentic enough and very reflective of a close-to-burnout brain. Actually, I’m not even going to edit this one – burnout brain doesn’t make me feel good, and hiding how burnout impacts me while trying to dismantle stigma feels pretty ineffective. 

Now – where do we go from here? Check this out – I’ll start by setting some boundaries (woah, Carly’s taking her own advice – that’s a first!) 

While I used to aim to have a blog up weekly, I think two regular blogs per month starting in the Fall once I’m back to regular part-time is reasonable. I’ll also aim to prioritize the blog, events, and training over TikTok and Instagram content (because that stuff just circulates forever – the algorithm is terrifying.) And finally, Mondays are off limits – while one day a week won’t be enough, it’s a solid start. 

Now what does this mean for us, [random internet person/loose acquaintance/good friend/solid fan]? Not too much! For the website, I’ve included a burnout watch on the home page and will be uploading my infographics and tiktoks so you can find my content all in one place. For the socials, I’ll clearly signal when my DMs are closed. For events, consultations, and trainings – I’ll probably still keep doing what I’m doing, consider this my weak spot for boundaries (they are just so fun, and I really do find them the most revitalizing advocacy method.)

And with that, the burnout blog is closed. Be kind to yourselves, seek professional help where needed and accessible, and be nice to others! 

Even when life can be a little bit too much of an on-fire garbage can, we can work together to take those flames out (or like, flip the can really fast – I think the science behind that checks out.) 

Consultations 101

A good chunk of my advocacy work occurs through consultations – a considerably more closed-door affair than blogging and social media posts. Despite the lack of visibility, I believe it’s one of the most important and consequential aspects of my work. While blogging and social media is particularly excellent at raising awareness and challenging stigma, consultations provide a more focused way of addressing specific problems and coming up with actionable solutions.

Consultations allow me to learn more about relevant topics, learn from my peers, and challenge my own beliefs and positions. I believe that when we are granted exclusive opportunities like consultations, we owe it to our peers and those not invited to make the absolute most of it. So, I’m really excited to share some of my personal tips on how to be a strong disability advocate at these consultations.

Before the Consultation

Learn more about the topic or issue beforehand.

While this seems like common sense or not the most pressing prep element, I believe it’s always worth doing some extra research to look into new topics and emerging ideas, and to organize your thoughts on the themes discussed.

Learn more about the host and their organization.

A little research into your host’s background or the organization’s beliefs and mandate goes a long way! This allows you to tailor your responses to keep them relevant, and to ensure you aren’t explaining something a host already knows – it wastes time, and doesn’t look great.

If you can, find out who else will be participating.

This is a great chance to practice allyship and ensure diverse perspectives are being recruited – and if they aren’t, suggest some peers who would be a good fit. If a host has gone through the trouble of organizing a roundtable, they’ll want it to be as rewarding and comprehensive as possible. This can also become a lot of fun when you have a recurring cast of characters, and knowing a reliable friend will be in attendance can relieve some pre-meeting nerves! (More about making consultation connections later.) 

Additionally, you might be speaking on a broad topic alongside some renowned experts in niche fields – in this case, you can focus on your area of expertise while being confident other topics will be appropriately handled. 

Prepare speaking notes!

If you take away any tip from this blog, take this one. Speaking notes are an absolute essential for me now, and I never go into a consultation without them!

While everyone’s process is different, I start by creating a backgrounder on the host, organization, and field to reference in-meetings. This is a great safety net, as I know I’ll still be educated and informed even if the topic veers away from what was expected. Then, I brainstorm the different aspects I want to touch in (ideally in response to a prompt) and get to work creating the actual notes.

I use a skeleton-script: main bullet points have my main ideas, while indented bullets have the more expanded ideas and speaking points. This helps me stay on track, hit all the points I want to make, and keeps me feeling confident and prepared. Partly because of my background in theatre, and partly because I am so, so anxious all of the time, I go so far as rehearsing my points in the mirror and revising the speaking notes until I’m 100% confident in what I want to say. And let’s be real, coming up with an absolute mic-drop of a line and delivering it live in a consultation is an unparalleled experience. Like this one, “we’re already having this issue in Canada, let’s not export it elsewhere.” 

Prepare for challenges.

Advocacy work is hard! It often involves dealing with very difficult, personal, and vulnerable topics – and in roundtable consultations, you have to be prepared to listen to others’ trauma. Two tips here: maintain boundaries – if it’s too much, excuse yourself, and make sure you’re in a good headspace to engage in difficult conversations. It’s important to prepare for these challenges because more often than not, we want to actively and empathetically listen to our peers courageously sharing difficult stories that often relate to our own lived experience.

During the Consultation

Keep in mind who you’re representing.

Depending on your roles and affiliations, you might be representing a larger group or an entire demographic! It’s important to always remember that advocacy isn’t about yourself, it’s about everyone. Reaching out to your circles, getting peers’ thoughts on the topics, and reminding those at consultations that you can’t fully speak to all lived experiences under your purview is essential when representing others. It’s also important not to monolith yourself! Your experience isn’t the experience – acknowledge that there’s a diversity of lived, real, valid experiences, and when you can’t adequately speak to that, opt to speak to your lived experience.

Keep in mind who you are addressing.

More often than not, the consultation host is trying to help solve a problem – and while it’s way easier to act like that one person is the root cause of all your problems and get some negative feelings out, it is definitely not effective, and definitely not responsible advocacy work. When you treat consultations like a learning process or a two-way street, your host is often much more receptive to your suggestions and will leave with committed to further learning and growth. If you want to get feelings out, scream in a pillow.

Listen to others in attendance.

Roundtable consultations are by far my favourite, because they provide a chance to learn from other advocates and get a better understanding of the issues they’re facing. Often enough, our best resource is our peers. And when we are surrounded by our peers speaking their truths, it’s important to listen and learn. 

Turn on your camera!

With widespread burnout and zoom fatigue, there’s nothing like a friendly face cheering you on. One of my favourite consultation moments was when another advocate messaged me to say that my facial expressions really comforted them and encouraged them to speak up! Additionally, having your camera on allows you to react to what others are saying, and helps those reading lips understand what you’re saying.

Keep in mind time constraints.

It’s so important to be respectful of others and their time – and it’s just rude to take up all the space for yourself! In advocacy and all other aspects of my life, I love to time budget. For roundtables especially, I look through the agenda and allotted time slots for topics, take away a few minutes as a buffer, and divide by the number of participants invited to figure out how much time is appropriate to take up. If you have super detailed, complex ideas – water them down! Your complex ideas will do better off as notes sent to the host afterwards.

When someone hits a nerve.

This has happened to me quite a few times, and my over-expressive face reliably gives me away. It’s important to remember that there is no one truth – we all have different lived experience and approach advocacy work from different angles (except when a non-disabled person tries to speak over you on disability issues, then you do what you gotta do.) Instead of invalidating your peers or calling them out in an inappropriate way, try approaching the issue with phrases like “in my personal opinion”, “speaking from my lived experience”, or “I feel” statements. “I hope we can hold space for both person and identity first language, in line with how people choose to identify themselves” has come into play for me a lot! Of course, if anyone is making you feel uncomfortable or unsafe – speak up if you can, or speak to a moderator 1 on 1 ASAP.

Contextualize, critique, correct.

I opt for this three-pronged approach in all my responses. Whether you’re given a prompt, question, or topic, it’s helpful when everyone understands where you’re coming from and why this issue is important to you and the people you represent! After contextualizing, critique away – address barriers, ableism, exclusion. You’re being hosted for a consultation because there’s an identifiable issue or opportunity, so don’t be afraid to speak your mind. Then, you gotta correct by offering some actionable suggestions – how would you like to see the issue addressed, and what is important for a solution to include? Offering clear examples will prompt your host to begin considering next steps, and will help you hold hosts accountable in follow-up consultations or discussions.

After the Consultation

Connect with your peers!

By far (or by-and-for, if you get what I mean) the best thing I get out of consultations is connections. Roundtables and forums often gather leading experts and groundbreaking advocates – take advantage of it and reach out after the consultation! Even a simple message like “great points today! hoping to see you again in future consultations” can keep you on someone’s radar, and more often that not it leads to some great discussions. And there’s nothing like being recognized and warmly welcomed when you enter a consultation.

Follow up with the host.

Often in consultations, loose ideas are thrown around and actual follow-up actions are taken later. By following up with the host and signalling interest in mentioned initiatives, you’re more likely to be remembered, well received, and invited back. 

Share your notes.

If you use speaking notes, sharing them with the host organization’s notetaker or moderator is a great way to clarify or correct your points made in consultation. It also gives the host organization a chance to reply and further discuss key issues.

Respect privacy and consent!

While most roundtables don’t swear you to secrecy or make you sign any waivers (at least in my experience so far!), it’s polite and respectful to keep others’ identities and opinions private, unless you’re received their explicit permission. This loops back to the intro, where I discussed the lack of visibility around consultations. One way I’ve boosted transparency and visibility is by providing recaps of my personal opinions on the topics to my audience. It’s also a great way to keep the conversation going, and bring your new thoughts and ideas to a wider audience.

So, there you have it – my tips for a great consultation. I hope you found some relevant, and I hope you have your own tips to share within our community! Together, we can work together to address pressing issues, confront exclusion and inaccessibility, and challenge ableism. And when one of us gets to the table, let’s make sure we keep the door open for our well-deserving peers.

You-th Oughta Know: The Importance of Youth in Social Movements and Decision-Making Processes

As my advocacy work continues to gain momentum, I’ve begun to find myself one of the few, if not the only, youth in the room – which is a big change from my work at NEADS, a by-and-for post-secondary disabled students group.

And while I could celebrate punching above my weight and breaking down barriers, I’m not satisfied. I don’t think I will be satisfied until I am joined by my disabled peers at every committee, staff meeting, consultation, or working group.

Youth have always been foundational to social movements, the driving force behind the wider societal changes happening as I write this and you read this. And yet, we are discredited due to our age, discouraged from what we feel is a lack of experience, and discounted in our advocacy work. 

After writing that, I’m realizing it’s not the most encouraging start to what is supposed to be a call to action. What I mean by the opening is that things are hard, the odds are stacked against us, but we will continue to fight, lead, and succeed together as we work for a better future. 

In today’s blog, I want to get into my personal experience as a youth disability advocate, why I believe youth are essential to any social movement, the power youth hold, and how youth can get involved in the disability rights movement.

It’s shaping up to be a long one, so bear with me. And now more than ever, I encourage your feedback, your interaction, your connection – as youth, our numbers and our shared experience are our greatest assets.

Quite honestly, life is getting weird. Weird in a very fun, very cool way, but definitely weird.

As I begin to take on the role of International Chair for the Council of Canadians with Disabilities (CCD), I’m getting invited to some higher-level, kinda terrifying consultations and working groups – in one of these, I’ll be working at the same level as one of my university professors.

That does not feel like a normal thing to do at 20. Or at least, society and social norms tell me that’s not normal. And while I will undeniably feel out of place, inexperienced, and imposterish, I will still go. I will still speak my mind.

At IDW ’22, I spoke on reverse imposter syndrome: knowing I am definitely not supposed to be there based on others’ expectations, but being there and being loud anyways.

Because what are they going to do about it – publicly discredit me? Who invited me to this gig, anyways?

Maybe it’s not the most fun feeling – feeling out of your depth, unqualified, and out of place – but I believe that by us going to these opportunities, being loud, and being proud of our age and who we are, we will create space for more meaningful and authentic youth engagement and participation in decision making processes.

And maybe I can’t bring decades of experience and hundreds of professional connections to my work, but I can bring my youth, and the many undeniable assets that comes with it. 

Whenever I feel discouraged due to my age, I remind myself that youth have been foundational to social movements for decades. Youth were behind the 504 sit-in, the climate justice movement, the Arab Spring, Euromaidan, and countless other incredibly important historical movements.

We are the driving force and the front line of social movements around the world – from protesting to grassroots organizing. And this trend is only accelerating – youth today are getting involved in social movements and civic action earlier than ever. What was once reserved for college students is now being carried out by elementary schoolers.

Literal children are organizing walkouts to protest violations of their rights and to demand change, and while it is beyond encouraging, it’s disappointing they feel compelled to start so young.

Today’s youth are better educated on their rights, more empowered by changing social norms to stand up for themselves, and more connected than ever through social media – all of which build upon past generations of youth’s work.

And youth aren’t just behind protests – we’re the canvassers, volunteers, and staffers that keep community organizations and political campaigns afloat.

We are the ones working 12 hour days, double shifts, two to three jobs, and volunteering on top of it.

And while we are the ones essential to organizations and campaigns’ success, we go uncredited, underpaid (if paid at all), and uninvited to meaningful decision-making forums. 

I believe we as youth have a lot of reasons to participate in social movements. Due to our age and position within society, we both have the most to lose and the most to gain. We are the ones that live with the consequences of the decisions being made today, and the decision that are often made without our full and equal participation.

There’s a growing criticism of youth involvement in protest and social movements – but this criticism largely ignores the fact that, when excluded from traditional or conventional decision-making processes, protests or social movements are our only option to speak our minds, voice our opinions, and make the change we want to see in the world.

When we are included in key discussions, it is often through youth-specific forums hosted by adults. And in my personal experience, while the connections I’ve made with my peers at these forums have been invaluable, our (unpaid and uncredited) input is rarely meaningfully and impact fully incorporated into end results.

Those of us who are included in these forums also often come from highly privileged positions – to be involved in these forums, you often need connections, resources, and support. Even if these forums adequately incorporated their participants’ perspectives, the whole picture would continue to be missing.

Maybe I’m biased, but I believe youth have this undeniable power, and I have seen it in action nearly every day of my life.

We know today’s context best – while we might not have lived through historical precedents and past similarities, we are fully immersed in today’s context as it is, and we are not weighed down by what was and what could have been. We know the world around us, and we pick up on the changes.

Often, we are at the forefront of innovation. Take social media – a now-essential tool for advertising, entertainment, education, entrepreneurship, and organization, youth are dominating the field in all its forms.

One thing I always bring up around older generations is how my generation has deeply benefitted from growing up in the online age – with constant innovations, breakthrough ideas, and changing platforms, we know how to keep up with the times and adapt to new contexts as they develop. (Of course, social media is not all good, but that blog is for another day).

Our youth also gives us something to fight for – as I’ve said, we have the most to gain and most to lose, and we will live with the consequences. Like all generations, we want to enjoy full, meaningful, fulfilling lives – and youth is the best time to secure that for ourselves.

Our youth also makes us visionaries. Yes, we can be naive (and it would be naive of me to deny this), and definitely not the most reasonable or pragmatic at times, but we push the agenda forward, incorporate new, innovate ideas, and never take no as an answer.

Our youth sustains us in our darkest hours, because we know that within our lifetimes there is so much capacity and potential to change. And you can go ahead and discredit our optimism and idealism, but we know more than anyone else that we are the ones that will live with the consequences of our failures and our successes. 

Youth today are also exceptionally experienced and qualified, even when we don’t believe it ourselves. In this economy, so many of us have to work multiple jobs and pursue diverse additional experiences to stay competitive and afloat.

Take a 20-year-old and a 30-year old: the former started work at 14 and worked multiple jobs at once, while the latter started their career at age 24 after finishing a degree. Despite the 10 year age difference, both have 6 years of work experience – showing how age is not an absolute qualification. (Also I can’t believe I incorporated math into this, so sorry everyone.)

I believe that one of the greatest things holding my generation back (besides ageism, economic instability, climate change, shifting labour market demographics, I’ll just stop now) is our self-doubt.

We are so quick to perceive ourselves as unqualified, so quick to compare ourselves to our much older competition or colleagues, who grew up in phenomenally different circumstances. But we are qualified.

I have firsthand witnessed the incredible, impressive, and somewhat excessive qualifications of my generation. We work day and night, just so we can work harder the next day.

We have incredible experience that wasn’t even available to our older colleagues when they were our age. And in a world where relevant skills, experience, and qualifications change so fast, maybe we should re-evaluate this self-doubt.

Maybe, our youth makes us incredibly qualified in today’s context. As long as we keep buying into the idea that we are not ready, not qualified, not experienced – we will continue to be excluded from mainstream discussions, continue to be excluded from decision-making processes, continue to be nearly invisible to those in charge.

And yes, this is a gross oversimplification, but isn’t it so wonderful to believe that just by believing in ourselves we can change all of this?

And now, the call to action. Point blank: we need disabled youth at the frontlines of our disability rights movement, and more youth in all elements of decision-making processes.

We are qualified, innovative, and experienced. We know what we need, we know what needs to be changed, and we know what kind of world we want to live in.

Uno reverse imposter syndrome – sign up for forums, discussions, conferences. Either get your foot in the door, or break the door down. Claim a seat at the table, or pull one up yourself. The worst thing those in power can do is say no, and if they do, we find alternative routes to make change.

In my work with NEADS, I have seen my disabled peers excel. My peers are qualified, bold, powerful, intelligent, moving, and demanding the change they deserve to see in this world.

Let’s use our youth-dominated spaces to foster connections and support that will sustain us as we begin to move into older generation-dominated spaces. Let’s use our youth to introduce innovative and imaginative ideas.

In my work with CCD, I fully and transparently plan to usher in a new era, where youth participation and leadership is central to the organization. CCD actively wants youth involved, wants youth to lead, and wants to empower us to do so.

Without the encouragement of Heather Walkus, CCD’s Acting Chair, I would have never considered applying for International Chair, and I would love to return this favour by empowering my peers to join CCD alongside me. 

Don’t let me be the only disabled youth representation. I am actively asking my peers to prevent me from getting cool opportunities and life changing experiences.

Stop me! Please!

Because if I’m the only representation, I am not being good representation.

To my disabled peers, please get involved however, wherever you can, in whatever capacity works best for you. Whether that’s through the #MyNEADS Community, CCD (especially the International and Youth Committees!), or municipal, provincial, federal, and international politics and decision-making processes.

We are stronger together – and once a few of us get in, let’s make sure everyone gets in.