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.

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.) 

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. 

Disability Self-Disclosure by Default

Self-disclosure has always been such a hot topic in the disability community – especially for people like me with invisible disabilities. While some of us don’t always have the choice of self-disclosing, those of us who do grapple with a very personal, vulnerable, and challenging decision – sometimes on a daily basis!

And self-disclosure shouldn’t be challenging, or anxiety-inducing – we should all be free to be who we are, without fear of discrimination or exclusion. Of course, this is not the case. Self-disclosure can result in a whole lot of trouble, and the process of self-disclosure can take a serious emotional toll.

After I started working for NEADS, I realized the word disabled is smack dab on the top of my resume. Disabled, disabled, disabled. And while I only realized this after taking the job, it came more as a relief than as a regret. Having NEADS on my resume, aside from the absolute resume boost it is that I am forever grateful for, provided me an opportunity to really bite the bullet when it comes to self-disclosure – instead of navigating it case by case, I chose to self-disclose as a default. 

The decision to self-disclose my disability by default wasn’t just because of my resume – it was because I was really growing into my disabled identity, and becoming proud of the disabled person I am. There is an absolute power when it comes to self-disclosure: power over the narrative, power over perceptions, power over the situation. Once I began to self-disclose by default, I never had to feel like I was hiding such an important part of my identity ever again. With self-disclosure, I was able to embrace my full, comprehensive, entire, and very disabled identity in ways I never could before.

As a queer, disabled woman, I’m going to take the opportunity to draw a parallel with coming out of the closet. I realized I was bisexual around age 14, and I never once considered being in the closet around my peers. I was proud of who I am, and I still am. And when I was in the closet, primarily around my family or in workspaces, I felt so uncomfortable. I was hiding a critical part of myself, my identity, my lived experience from people I loved, people I saw every day, people who had an undeniable impact on me. And every time I came out to someone new, I felt a little more safer and a little bit more comfortable with who I was.

Choosing to self-disclose my disability by default was choosing to own my full identity unapologetically, in every space I occupy. And while scary at first, it quickly became empowering. I recently started a co-op work term for the government (views are entirely my own!!), and without any real thought spoke about being disabled my very first day. And it has been so, so rewarding. I already feel so welcomed, so accepted, and so safe to be myself in this environment. And while the environment would have stayed the same regardless of my self-disclosure, it feels safer knowing I have nothing to hide. 

Another perk about disability self-disclosure by default is the confidence boost. Being open about my disability and my lived experience makes me the disability expert in the room, whatever room I find myself in. And when you are a very small fish in a very big pond (or lake, or ocean) – having that undeniable knowledge and skill can be so comforting. This confidence boost is equally matched with a self-confidence boost – by self-disclosing, I’ve chosen to live up to my full identity every single day. I’ve chosen to be unapologetically myself, and to believe in my capabilities and choices. 

Part of self-disclosure, for me at least, has to do with disability pride. One of the reasons it can feel so hard or unsafe to self-disclose is that society is constantly advocating for your death – be it through MAID, removing masks, accepting deteriorating health care and long term care systems, you name it. And when people want you dead, naturally you might want to keep your disability on the down low. So, when I choose to self-disclose, when I choose to go against these social stigmas and norms to take pride in my identity and be true to myself, it feels like an act of rebellion. It feels like a radical act of self-love. And it feels like an act of community: the more of us self-disclosing, the more of us working together to push back against these narratives and to improve disability representation in our spaces.

A disclaimer: self-disclosure is not for everyone. Self-disclosure can be dangerous, life-threatening even. You can choose not to self-disclose (or you can just not self-disclose when there is no real choice available) and still be proud of who you are. You can be proud of your disability and not publicly claim it. You do what you gotta do to keep yourself safe. I know I speak from a place of privilege when I share the benefits of self-disclosure, and I know that as a white woman from the middle class, I will not be subject to the discrimination many of my disabled peers face. 

Disability self-disclosure by default has been freeing, empowering, and incredibly meaningful. It has allowed me to enter new professional spaces in my entirety. It brings me confidence and self-confidence. It enables me to use my expertise to make spaces more accessible and inclusive, and it creates representation that makes my disabled peers feel safer. To go from hiding my identity and weighing the pros and cons of being my true self to owning my personality and lived experience has been transformative and freeing. And while it’s always a personal choice to self-disclose, I ask my disabled peers in a position to do so, go ahead and self-disclose! Non-disabled society has no clue just how many of us there are, and once we self-disclose we are able to find each other and work together to create more accessible, inclusive, and diverse workspaces. Together, we can make self-disclosure an asset and a source of pride, not a liability and source of anxiety. 

Joining CCD: Incoming International Chair

Usually when I write in the moment, words come easily. Even though I literally just found out I’ve been voted in as the Council of Canadians with Disabilities’ Chair of the International Portfolio, I don’t have the words right now. I’m quite honestly overwhelmed – by gratitude, by opportunity, by love. So, please struggle with me as I try to put into words what this opportunity means to me.

The Council of Canadians with Disabilities is the oldest by-and-for disability organization in Canada. It has fought for disability inclusion in the Charter of Rights and Freedoms, it has fought for the Accessible Canada Act, and it has fought for the UN Convention on the Rights of Persons with Disabilities. To be a part of the very same organization that fought for the rights I too often take for granted, and to work alongside those who fought for those rights is overwhelmingly meaningful and profound. I believe I owe a lot to these people, and I believe I have a lot of learn from them.

As a disabled youth advocate, I have firsthand witnessed the energy, resilience, and dedication my generation is bringing to the disability rights movement. Attending the Global Youth Disability Summit (GYDS) connected me with my disabled peers across the world, and I cannot wait to further develop these networks and possibilities. In our globalized world, the disability community is larger than ever, and I know that with increasing international cooperation, we can further mobilize our strengths to demand the full realization of disability rights around the world.

I do not take this opportunity lightly, and I put myself forward for this position with full commitment. There is too much at stake in both national and international disability rights to not give this opportunity everything I have. There are too many people that have experienced far too much pain when they did not have to. There are life-and-death matters that have to be dealt with. There are centuries of systemic ableism and intersecting forces of oppression to dismantle. And while I will do everything in my power to tackle these issues, I am beyond grateful to know I am not alone. The Council of Canadians with Disabilities is unparalleled in the magnitude of disability excellence they hold. They fight fight after fight, win, and go on to the next. They have sustained the exhausting and brutal grassroots work and resistance needed for real change. They have been the foundation of Canada’s disability rights movement, and to know that I now hold this position within such a historic organization is beyond humbling, and definitely at least a little terrifying.

Becoming the Chair of the International Portfolio would not have been possible without the network I’ve developed through NEADS, my stellar support system, and my mentor Heather Walkus. My heart and mind are so full, and I can’t wait for what the future has in store.

Looking towards the future, I know I have my work cut out for me. I have been warned that this will not be easy, and will challenge everything I have at times. And honestly, I’m excited. I’m excited to learn from my elders, to leverage my youth and encourage my peers to get involved, to learn, grow, and challenge what I know. 

As Chair, I know this position is not about me. I’m fully committed to using this position to promote the most marginalized voices within our community and ensure our approach is reflects those we serve. I’m committed to bringing in an intersectional, empowering, and ever-evolving approach to the work I do, and to holding myself accountable to be the best disability representation I can be – at home and abroad. I cannot wait to build my committee and incorporate diverse ideas, perspectives, and opinions, and encourage my disabled peers to reach out and get involved. 

It’s hard finding a way to sign off on this blog when my thoughts are still going at least 90 miles a minute. So, please know that this conclusion is just a start. I’m just starting in this role, just starting the committee building process, just starting to figure out my own role as a disability advocate. There is a lot going on, and a lot to figure out, and I would never have it any other way.

By-and-for in the Disability Community: Nothing About Us Without Us

As a disabled person, the term “by-and-for” brings such a sense of security to me. When I’m working within the disability community, finding out a group or initiative is by-and-for is literally a breath of fresh air as I sift through the charity models and burden rhetoric that plagues my life. And while no by-and-for group is perfect (or immune from criticism), I know they’re going to do their best to honour lived experiences and empower disabled people how they want to be empowered – and I don’t feel like that’s too much to ask for.

A quick explainer on by-and-for: as you might have guessed from the term, by-and-for groups are by members of a community for members of that community. These groups work from within the communities they are inherently a part of to promote empowerment on a local, national, international, and systemic levels. They centre their members lived experience and resulting unparalleled expertise to serve their community’s needs, as determined by their community. 

You might have heard the phrase “nothing about us without us”. I love it, some think we can do better. But at the same time – it’s kinda pathetic that’s where we’re at as a society right now. For so long, non-disabled people have been dictating the disability community’s needs, wants, and experiences with absolutely no input from disabled people, and no widespread criticism for their often harmful practices. And this practice still goes on! The perspectives of non-disabled people continue to dominate disability debates, sidelining actual lived disability experience to favour burden or charity-model rhetoric. 

Sometimes working in the disability community feels like one of those inflatable bouncy castle obstacle courses. Or better yet (because I just couldn’t work out the analogy into words) catfishing. I go to meet what I assume is a by-and-for group, based on their website, messaging, and communications – and end up tricked into explaining my existence to non-disabled people instead of getting to work on pressing issues. When I first started getting into this work, I underestimated how pervasive these groups are! And this is partially explained by the shifting form of non by-and-for groups: keeping disabled people at the lowest levels of the organization to claim legitimacy while denying them leadership roles and agency. 

And what’s even more frustrating is how these non by-and-for groups have such a chokehold on the non-disabled public! I’ll spare the public call-outs (for now), but the organizations most non-disabled people are familiar with have next to no disability representation! And these organizations carry on monopolizing opportunities, funding, media attention, because they portray themselves as by-and-for, or are incredibly successful in pushing the charity model or burden narrative. 

Let’s break down some of these narratives. 

The charity model sees disabled people as charity cases – people with issues that can be solved with the right amount of money. The charity model fails to address systemic ableism and other root causes making many of us disabled people requiring additional and often unmet support. The charity model also promotes a harmful perspective that sees disabled people as less than, and denies disabled people their agency and autonomy in finding sustainable, empowering solutions to their issues. 

The burden narrative is most often pushed by parents – with the most extreme cases having parents of disabled children forcing their disabled children to testify in court that they shouldn’t have been born. Parents of disabled children often centre their personal and negative experiences of having a child with a disability, or they use their child as a way to legitimize their views that do not reflect the disability community at all. Parents of disabled children are absolutely essential in empowering disabled youth, and protecting them from harmful situations. They can do a lot of good – but they can also do a lot of harm. I’m not a parent, and I don’t plan to be – so while my criticism will not go further, I believe we all have a role in holding all people accountable for the narratives and rhetoric they’re pushing. 

Some may argue “who cares what non-disabled people are saying, they have a right to their opinion.” And that’s valid! It’s not wrong! But we have to understand that non-disabled people are operating at a serious advantage when it comes to controlling the narrative, especially since disabled people are less likely to have that power due to systemic ableism. People have a right to their opinion, but that does not absolve them of the consequences of their actions. When a parent of a child with a disability goes to court and sues a doctor for giving birth to their disabled child – that sets a legal precedent. That normalizes a narrative that sees disability as a crime punishable by death. But we don’t hold these people accountable! And so this hate speech and dangerous rhetoric is allowed to go unchallenged.

The harm non-disabled people can do is further amplified by the current legislation around Medical Assistance in Dying in Canada. Known as MAID or Bill C-7, many have said the government has made it easier for disabled people to die than live. I’m one of them. And what really kills me (or what really could kill me!) is the fact that we do not have adequate disability representation in our government! We do not have equitable opportunities to have our perspectives reflected in our institutions! While non-disabled people get to vote on whether or not to kill us and push this narrative, they’re not the ones whose lives are threatened, who are losing their loved ones, friends, and peers. 

So yes, you are entitled to your own opinion. But if your opinion is that it is better for me as a disabled person to die than live, you are not immune from the consequences of your actions. 

But before you give up on disability issues entirely, please keep reading. I want non-disabled people to care about disability issues! I want them to speak up against ableism and inaccessibility! I just believe the current way non-disabled people are dominating our spaces and conversations is not acceptable, and that we have a lot of room for improvement (what can I say, I’m an optimist.)

Before getting into some actionable tips, tricks, and reminders for disability allyship, let’s talk about how disability has been excluded from intersectional allyship movements! Despite disability discrimination claims making up half of Ontario Human Rights Court cases, we are constantly and consistently sidelined or entirely excluded from diversity, equity, and inclusion initiatives! Despite making up 20% of the population and being the only minority group you can join at any time, intersectional allyship and initiatives continue to ignore our needs and agency – while claiming to value all experiences! As someone in an international development and human rights program, involved in a lot of student and community movements, I am routinely disgusted by the hypocrisy I see! To claim to be intersectional while ignoring disability isn’t just ignorant, it’s violent. And when I point this out, I’m more often dismissed than taken seriously!

To sum it all up, we all have a lot of room to improve. Disabled people too – a cross-disability allyship blog is in the works for those of us in the disability community (and non-disabled people interested in learning more!) I don’t want this blog to make you feel discouraged or overwhelmed, I want it to help you understand just how important by-and-for groups are, and how important it is to live up to the promise of “nothing about us without us.” As long as you are truly trying your best, it’s all I can ask, and it will be so appreciated. So, here are your tips:

  1. Understand that you can’t completely understand our lived experiences. Disabilities and the people that have them are complex, diverse, and always changing. Instead of accepting that you can’t know everything, commit to always learning and improving your disability allyship practice.
  2. Understand that, like all people and communities, the disability community is complex and intersectional. We are people. There is rarely a universal perspective or opinion, and our lived experiences seriously differ based on our belonging to other groups (ie. BIPOC, LGBTQ2s+, etc). Instead of treating the community and advocates like monoliths, hold space for different opinions and ideas.
  3. Understand that our understandings of disability, neurodivergence, accessibility, and more are always expanding! These are complex, evolving, and living concepts that need to change as our realities change. Instead of feeling overwhelmed by changes in understanding, take it as an opportunity to challenge your knowledge and beliefs.
  4. Commit to centring the lived experience of disabled people, and make sure you’re centring disabled people from all different backgrounds. For another blog post, but the disability community is not immune to white supremacy, sexism, homophobia, you name it. 
  5. Commit to unlearning internalized ableism, harmful stigma, and common misconceptions. It’s an excellent first step to any allyship practice, and I encourage you to check back in on these ideas regularly.
  6. Support disabled people in all aspects of life – education, employment, community, etc. We are people that deserve equity and agency wherever we go, whatever we’re doing. Not just when we’re doing what you agree with, and acting the way you want us to.
  7. Support disabled advocates, activists, organizations, and creators – it’s draining taking our intense and complex lived experiences and sharing them in the face of systemic ableism and unchallenged stigma.
  8. Push for accessibility, inclusion, and representation in the spaces you occupy. When a disabled person is already there and doing that work, support them instead of centring yourself!

Disability and Music

A few days ago, I had the absolute privilege of attending the final stop of the National Art Centre’s Orchestra‘s Truth In Our Time tour. This concert was beyond exciting for what feels like a billion reasons: it was the final stop of their tour, the truth in our time theme was, well, timely (sorry!), and this was the first time in 2 years that I’ve heard live music! And above all? I’ve been dreaming of going to one of these concerts since I first fell in love with Ottawa at age 14 on a choir trip to MusicFest Canada – embarrassing photo of myself at the time pictured above.

I think the relationship between music and disability is severely underrated. The disability community has its own culture and history, and so many diverse ways of communicating and understanding the world around us. As I’ve discussed in past blogs, becoming disabled challenged how I saw myself fit into the world, and challenged how I could express these perspectives and experiences. Even before I was disabled, music was essential to expressing myself, sharing feelings with others, and feeling connected with something larger than me. And once I became disabled? Music was lifesaving. While I was also involved with musical theatre and choral music for over 8 years, concert band saved my life on multiple occasions – and I’d love to take you through them.

The first time concert band saved my life was in grade 6. Overwhelmed by my depression and generalized anxiety disorder, I was having difficulty with my attendance, my academic performance, and just generally everything. While I absolutely dreaded classes, I kept going to school specifically for concert band. There, I could challenge myself every day to try new things, improve my skills, and work harder at something I truly loved. And the best part was that everyone else there loved it too. The routines of 8am band practices soothed my anxiety, and our repertoire (even at the elementary school level) managed to bring out my emotions when they were deeply removed from the rest of my life. 

The second time concert band saved my life was in grade 7. I had left my last school and concert band to pursue a french immersion extended program, which had such underwhelming results that the entire program was recently cancelled province-wide. Keeping that energy in mind, this school’s environment was dramatically worse than the last – and the concert band didn’t even have performances. Dealing with a growing eating disorder and some really severe bullying, I didn’t even have concert band to find comfort in. After enduring an entire year, I made the decision to return to my last school, where I immediately began to get better mentally and physically.

A quick note on my elementary school’s music program: this place had something for everyone. The at-risk kids, the “special ed” kids (as they were called), the excessively privileged kids, and everyone in between all came together in the same small classroom crammed with band chairs and concert stands. Whether by choice or during music class, everyone passed through that class and saw the Kiwanis Awards, group photos of past bands, and trophies lining the room. Whether stuck on the bells or allowed free rein on instruments in the back room, everyone had an opportunity to discover what music could mean for them. Everyone had a chance to belong. And when you’re 13, that means everything.

The third time concert band saved my life was in grade 11. As I’ve touched on in a previous blog, concert band was the only thing stopping me from dropping out of high school completely. When my JIA kicked in and kicked my ass, in that order, I just couldn’t keep living my life how I was. If I didn’t have concert band in my life, I would have absolutely dropped out of ‘traditional’ high school in a heartbeat for online and itinerant courses. But because of concert band, I didn’t. Because of concert band, I made real friends, stayed involved in student life, and graduated valedictorian of a graduating class numbering around 500. And while there is absolutely nothing wrong with non-traditional schooling, the traditional approach with hybrid accommodations really allowed me to thrive.

In grade 12, my life did not need saving – but concert band made it a whole lot better. With my fibromyalgia treated for the first time ever, I was at the top of my game. My attendance was phenomenal for the very first time in my life, I was awake and engaged in all of my classes, and my leadership in band helped me learn more about myself, re-learn how to connect with others, and feel emotions again after a PTSD diagnosis. Because of concert band, I was learning how to live my life again. 

And then, during the peak of my concert band career, the pandemic hit. 

And then two years happened.

And then I saw the National Art Centre’s Orchestra, in a city I fell in love with on a choir trip, and I remembered how much I love music and all of the ways it has saved my life. 

And now, here we are. I don’t see myself going back to performing music for quite some time – between school, work, and advocacy, I can hardly find the time to attend concerts as it is. Plus, I don’t really want my paper-thin-walled apartment neighbours to hate me, and I can’t justify the cost of an entire flute or saxophone and practice room fees. And while I did contemplate the fate of my love for music over the pandemic, the NAC Orchestra’s concert showed me that I can still profusely love music – just as an audience member.

As a neurodivergent person, let me just say that concert slapped. I cannot put it into words, but it scratched a part of my brain that really needed scratching. As I’m writing this, I keep air punching – not helpful for writing, but hopefully that conveys how good this concert was. I’m still learning a lot about my neurodivergence, especially how it physically manifests – but I’m learning that when I was ‘just feeling the music’ I was actually stimming, which has really helped me unpack some internal ableism around that. And it was strange, watching this incredible music with so many layers and mixtures and sounds and levels and (subtly) moving alone, while all the heads on ground level below me stayed nearly frozen. I didn’t understand why no one else was at least slightly swaying to the music – let alone showing signs of absolute joy!! like?? How can you stay still!! Look at that oboe!! Look at that piccolo!! Why are they so shiny!! All the violins move together!! That’s so cool!! Do they rehearse moving together or do they just vibe!! (I did not anticipate including a play-by-play of my mind during writing structuring but hope you enjoyed that little peek into my neurodivergent head!!)

And as a physically disabled person? I love being an audience member! While there are a billion ways theatres can become more accessible (starting with widening the spaces between rows and having spaces for more than one wheelchair to sit together), being able to sit down and participate in that feeling of community and appreciation for music? Incredible!  I also loved being a musician – while no professional, I found performing classical music incredibly accessible. I showed up 15 minutes early to run some scales to warm up my arthritic hands, and I was good to go! While I can only speak from personal experience, a ton of people within the disability community are leading some incredible initiatives to incorporate our culture into music in all its forms. 

I think music has something to offer everyone – disabled and non-disabled performers and audience members alike. Music provides an opportunity to feel included, to feel represented, and to feel like you’re a part of something much greater than yourself. Music is escapism, reflections on and of reality, criticisms of the status quo, insights on lived experiences. Music provides a new way to perceive and understand the world, to communicate our thoughts and feelings, and to share our lived experiences. Music is culture, connection, communication and community. Music can help us understand each other, understand ourselves, and understand things impossible to express in words. 

To me, music and disability feel inherently interconnected. I can’t really understand the lack of discussion on this topic, the same way I can’t really understand why audience members sit so still during concerts while the musicians sway with the music. This aside, I think there is a lot of opportunity and a lot of possibility for more arts programming around music and disability – for disabled people to express themselves, for non-disabled people to learn more about our experiences, and to promote our disabled culture that is so vibrant and complex and diverse. 

Disability Gratitude

TW: This blog briefly discusses s*icidal thoughts.

I probably shouldn’t be at peace right now. It’s going to rain all exam season so I’ll be writing through (b)rain fog, there’s an excessive amount of recycling that needs to be taken out, I haven’t received a call from my new dermatologist yet, I’m worried I invested in this website for nothing, the list goes on. 

Despite everything going on, despite losing my remission, despite uncertainties in how I’ll handle work and school as everything progresses – I’m happy. I’m at peace. I’m feeling a lot of gratitude for a lot of things. And I’m feeling this gratitude and peace despite the hypervigilancy, the anxiety, and the brain fog. There is something about disability gratitude that encompasses our disabilities to make it feel so much more powerful. 

Because we are told by society that we should not be happy by any means. We look wrong, we speak wrong, we exist wrong. 

Because we are told by doctors that we are crazy. Or attention seeking. Or have low pain tolerances. 

Because we are told by policymakers that we don’t matter. We can’t vote. We can’t run for office. We can’t have political power.

Because we are told by our communities that we will never belong. Not at home, not at school, not at work, not at all.

So how can I feel gratitude? Why do I somehow have that will to keep going every day? To shift narratives, to challenge stigma, to just exist as I am? The non-disableds are going to have a field day with this (and I will go after anyone using me as inspiration porn) but I’m feeling gratitude because I am disabled. Because I am me, disabled. 

My disability gratitude didn’t come with the disability – it came after I hit my lowest point. I remember being stuck in bed at 17, sobbing and begging to die. I’m not a religious person, but I prayed for god to kill me. Not because I hated being disabled, but because I could not imagine living any longer than I had – it felt impossible, and overwhelming, and just cruel to imagine a future only to have it ripped away from me. 

Spoiler alert: I didn’t die. And as I kept not dying, I realized I had to start living. And to live knowing I could die at any time created this vulnerability and empathy I never had before. To start living, I had to acknowledge all the things I was so afraid of losing in death – the things that made my life worth living. As I realized I had so many things worth living for, I developed the will to fight for these things and the will to stay alive – to take the chemo and the steroids, to keep going to school and work, to keep living the life I love. When you understand what you have to lose, you realize what you have to do to keep those things – even when it feels impossible. 

For me, staying alive was an accomplishment and an act of defiance. To live when I was not supposed to, to feel accomplishment where I should have felt defeat, to feel gratitude where I should have felt nothing. Existing as a disabled person is, in and of itself, an act of defiance. And to exist as a disabled person, feeling gratitude and vulnerability and fear and joy? It makes me just as human as everyone else. 

I love being disabled, or at least, I love who I am because I’m disabled. I don’t bother asking myself what life would have been like without my disabilities, but I know I wouldn’t be the same person in the slightest. Becoming disabled forced me to see the world in new ways, to find joy in new things, to understand that there is always some reason to keep going – even when it doesn’t feel that way. 

As for right now? I’m grateful for the disability community. I’m grateful for all the support for this blog. I’m grateful for the opportunities to share my experiences and make life feel a little less lonely for those going through the same things. I’m grateful for my job. I’m grateful for my vulnerability. I’m grateful for my family and friends. I’m grateful for my partner. I’m grateful for my life. And I’m grateful that at 17 I found the will to keep fighting when it felt impossible. Because I love my life, and I love being disabled. 

Self Advocacy: Why Is It So Hard?

Disclaimer: I will be narrowly balancing a shameless self-promotion and what will hopefully be a helpful resource throughout this blog. Read at your own risk folks.

I’ve been invited by Take a Pain Check and the Canadian Arthritis Patient Alliance to speak at their Instagram Live on Self Advocacy tomorrow, and while it’s pretty late on a Saturday night and I should probably be doing social life things – I just had to write this blog. As I do with all my speaking engagements, I prepare some talking points on pre-determined topics or prompts – and while I can usually write all my thoughts out and be satisfied, I don’t think I’ll be able to fit everything into a one-hour event – and I talk really fast.

Self advocacy is essential, vital, crucial, life-or-death to the disability experience. We have no choice but to advocate for ourselves in all spheres of our lives – be it healthcare, school, work, the community. And while self advocacy is so crucial, and every organization has put out resources on it at least once – it is still. so. hard. to. do. And the concept still feels so out of reach to so many people. So – why is self advocacy so hard? Why does it feel like we’re always talking about self advocacy but not actually doing it? Let’s figure it out together.

First off – what is self advocacy? Great question right? Unfortunately, I don’t have a straightforward answer for you – because the first half of that term makes it very personal, very powerful, and very vulnerable. I can, however, tell you what it means to me – self advocacy means sharing my needs, my experiences, my perspectives, and my goals with others to create more accessible and inclusive spaces. To me, self advocacy is a two-way street, a constructive and open dialogue that can be uncomfortable at times. 

After all, a lot of the time we need to advocate for ourselves during serious power asymmetries. Why would an overworked, underpaid doctor want to hear me out? Why does my professor need me to explain my accommodations when it’s a legal requirement? When these gatekeepers (in a dictionary sense of the term, not a name 5 of their albums vibe) have so much power, it can feel unfair that I have to do all the heavy lifting. But here’s the kicker – when it comes to what I need, and what I’m experiencing, I’m the most qualified person in the room. Every. single. time. And that undeniable qualification is what allowed me to work through the catch in my throat and the tears in my eyes, to show vulnerability and ask for help, and to advocate for myself and my needs.

Self advocacy is widely acknowledged to be incredibly uncomfortable to do – but maybe it’s worth considering that it’s uncomfortable for others involved. Disability is rarely accurately understood by non-disabled people, and no one likes to feel uninformed or called out. When we take that extra step of encouraging a safe and open conversation, we’re able to honestly discuss what we need and address any confusion or misconceptions that often prevent us from getting it. I know, when you are at a power disadvantage it feels so fundamentally unfair to be asked to put in extra work – especially in life or death situations. Unfortunately, we are working against centuries of systemic ableism and an oppressive status quo – so we are going to have to suck it up and carry on so that the next generation might not have to. 

My Experience with Self Advocacy

Like presumably everyone else, my first kick at self-advocacy (or more-so, my failure to kick it at all) was frustrating, embarrassing, and difficult. I haven’t discussed it here on the blog much, but in the two years between my twin’s diagnosis of JIA and mine – I convinced myself I was just a very empathetic person. I practically gaslit myself into thinking I was imagining disabling pain for two whole years. For that whole time, I didn’t realize I needed to advocate to myself, for myself. Once the pain became (even more) unmanageable, I went to the doctor that referred my twin to a rheumatologist to ask for a referral myself – the same doctor that told the both of us for years that it was just growing pains. I was probably emboldened by her being proved wrong by my twin, which enabled me to approach this self-advocacy with an assertive attitude. To no one’s surprise, except that one doctor, I had JIA too. 

My first attempt down and a billion more to go, it was time to take the self-advocacy show on the road: first stop – high school. While the medical model is an absolute nightmare and a diagnosis is no golden ticket, having documentation behind me quieted down those thoughts that used to tell me it was all in my head. I realized that no one knows me the way I know me, and that I’m my best bet for getting the accommodations I need. Getting my initial accommodations was easy enough, but the real test was when my JIA became so bad I almost dropped out of school. I had to meet with my vice principal, the attendance officer (a chronically ill high schoolers sworn enemy), and my accommodations supervisor (who I don’t remember showing up) to discuss why I was missing so much school and what we were going to do about it. While I love to prepare for these kinds of meetings now, 17 year old me had no clue what to expect, let alone what the available options were!

So, I approached the meeting with an open mindset and the acceptance that I would probably cry during this meeting – whether out of frustration, vulnerability, or overwhelm. While I did speak in a croak and wiped away a tear or two, I explained why my attendance was awful and made it clear that I did not know what options were available. And that’s how this self advocacy thing clicked – once I explained my experience and outlined my expectations (or rather, lack thereof) I was able to work with everyone involved to explore agreeable options and choose what worked best for me. On top of that, some follow up self-advocacy work on my part with some favourite teachers kept me in band once or twice a week and my first period literature studies class after that. 

With that experience behind me, self advocacy got easier with practice – but that doesn’t mean it stopped being hard. Switching into adult healthcare was a massive learning curve, and a dehumanizing rediagnosis process was enough to scare anyone away from self advocacy. After moving 8+ hours away from my family and hometown, I can feel caught mid-air without my self advocacy safety net. And keeping my cool while being the only disabled advocate a high-level, incredibly consequential consultation on post-secondary disabled students’ supports really tested my resolve. Hard? Yes. Worth it? Always.

I try not to talk too much about my work at NEADS, as I still need to navigate that separation between work and private life to avoid this – (disclaimer: views are my own and do not reflect that of my employer.) But I have to give them credit – being employed to research and create resources on self advocacy has empowered me – empowered me to learn from others, empowered me to challenge myself to set a good example, and empowered me to feel qualified in my personal self advocacy work. On the other hand, being so open about my disability and having a by-and-for disability organization on my resume means self advocacy will always be required in other jobs – and I have a feeling not all of my supervisors or hiring managers will be as understanding as my disabled colleagues. On top of that – I still have future healthcare visits! I’ll have to see a dermatologist soon, and transition clinics only last up until a certain age.

Don’t get me wrong, I don’t regret a thing (related to working for NEADS and being a disability advocate) – disability advocacy has been incredibly fulfilling, humbling, and empowering. From the start, I’ve always had disabled acquaintances reach out to tell me how empowering it is to have someone out there advocating and raising awareness – making them feel more included and understood. I mean, once someone tells you that and once you realize it’s true – how can you stop? And once you get started, you get caught in this all-seasons snowball as your network expands and opportunities become more available. Podcasts, documentaries, and instagram lives are all really cool – but working with your peers and representatives to make tangible change benefitting your whole community? I still can’t wrap my head around it. Maybe it gets a little (or a lot) weird when people prepare their presentations for your disability inclusion questions, or check you off on the guest list before you introduce yourself – but for some weird reason I have been given the power, positions and privilege to get stuff done, and I’m going to use everything I am given to create sustainable change for our communities. It would just be too much of a waste not to.

Tips for Self Advocacy

So – you’ve made it this far. Hopefully you understand what I mean about not being able to fit this all within an hour. I’ve managed to talk a lot about my experience with self advocacy without giving any actual tips, so please enjoy this section where I will overcompensate for that imbalance. Or, we can just pretend I’ve centralized all my tips here for simplicity – your call.

Understand that you are the most qualified to advocate for your needs, your experiences, and your goals. No one knows you like you do! And no one has the right to pretend that they know better!

Recognize that self-advocacy is hard for everyone. Self advocacy requires admitting that things are not okay, and that you need help – literally no one enjoys that! Self-advocacy requires you to challenge the status quo – something many of us are conditioned to never do. By recognizing that self advocacy addresses forces way out of your control and that all you can do is your best, you’re bringing the compassion and empathy required for effective self-advocacy to the table. 

Realize that self advocacy is a two-way street! Or maybe more like a four-lane two-way street with a streetcar depending on how many people are involved! Self advocacy requires all parties to communicate and listen, and constructive and empathetic dialogue is your best bet in achieving a better outcome for everyone involved. 

Reach out! If you don’t feel comfortable self advocating just yet, don’t deny yourself essential accommodations or support. For post-secondary students, your student union should have an advocacy support available. For high school students, reach out to your student council, a trusted friend or teacher, a guidance counsellor, or a family member for help. 

Work through the discomfort, and the choked up throat, and the tears if you have to. These are not a sign of weakness – they really truly are a sign of bravery. When you know that something is hard, or scary, or overwhelming and do it anyways? That’s real power. Starting self advocacy is the hardest part, but what is hard today is at least a little less hard tomorrow. 

You’re probably already self advocating and just don’t realize it! Self advocacy isn’t just about accommodations at school or work – we self advocate in everything we do! We self advocate in our relationships by communicating our wants and needs, we self advocate at work and school for opportunities and promotions, and we self advocate in the community when we share our ideas for change.

So, there you have it. A blog post on self advocacy. To answer the second question I completely forgot about until now (I never said I was an organized writer), we are always talking about self advocacy because it is so personal and complex – there is so much to explore, and so much to improve. But at the end of the day, there is no guaranteed way to successfully self advocate – there’s just too many variables. So, we can share our experiences, and our best practices, and a few lessons we learned along the way – the rest is going to have to be up to you.

Trust in yourself, know you’re the best one for the job, and go give them hell – in an empathetic and constructive dialogue-y kind of way.