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.

Becoming Disabled

Unfortunately, becoming disabled is not as easy as someone coming along, handing you an accessible parking pass, and sending you on your way – becoming disabled is a complex, deeply personal journey that rarely has one tipping point.

For chronic, complex, and mental illnesses, even with diagnoses – for those of us privileged enough to have access – you’re never told you’re disabled. You’re told you have ADHD, PTSD, fibromyalgia, JIA – but no doctor comes along and says you are disabled. (Take that medical model.) 

I hadn’t really considered how I became disabled until now. I assumed I began identifying as disabled when I was diagnosed with juvenile idiopathic arthritis at 16 – but that’s not true, I only starting considering myself diagnosed a year and a bit later.

And as I thought about it, my whole disability experience unravelled to show me that I was disabled long before that JIA diagnosis, or any diagnosis for that matter. I just never knew enough about disability to consider myself disabled, and I held a lot (a lot!) of internalized ableism [insert another remind me to write about this later remark here]

So, let’s unravel my disability experience together.

I was a deeply anxious kid – while I still did well in school and with others, I was always feeling sick and wanting to stay home. Then, I was a deeply in pain kid – and my above average height at the time made “growing pains” an easy excuse for doctors to dismiss me (shout out to the arthritis pals, who all went through the exact same thing.) I was always coming down with something, and never felt as good as my peers seemed to be.

At age 11, I was diagnosed with generalized anxiety disorder and depression. Looking back, it seems strange I knew how to ask for help so young. I deleted the part where I wrote that I didn’t feel shame – I absolutely did, and hid my diagnoses and medication from my family save my mom for years. (Shout out Mother Fox!) At 11, my anxiety and depression kept me in bed and riddled my attendance – but I didn’t consider myself disabled. At that time, I don’t believe I had any real understanding of what disability meant, besides wheelchairs and the “special ed” kids we would volunteer with. 

At age 13, my anxiety and depression were joined by disordered eating. Besties, I know. It was rough. And it was hard to beat. And it came back a few times. And I won’t rule out another relapse. And at age 13, with anxiety and depression and disordered eating that made it hard to go to school at all – I still didn’t consider myself disabled. In fact, I probably considered myself cool for it – consider this your daily reminder to condemn 2014 Tumblr and its current instagram-fast fashion renaissance from hell.

At age 14, chronic pain and constant illnesses began to accelerate, and teachers began to hate me for my poor attendance. My peers would make fun of me when I returned after multiple days off, and someone gifted me a copy of Ferris Bueller. Maybe I played it off like I was ditching – but I was in pain, sick, and confused. But I still didn’t consider myself as disabled.

At age 15, after becoming exceptionally bad at math (a new development), I went to my guidance counsellor and told her I was going to drop out – a cry for help if I’ve ever heard one. She said “numerically, your grades are too high to fail this semester.” I swear, guidance counsellors have to make commission every time they get a kid to drop out. Fortunately, I went back to the doctor who had diagnosed my anxiety disorder and depression, and I was then diagnosed with ADHD.

ADHD was never really explained to me (is anything ever in our overwhelmed healthcare system?), but a medication finally helping me cope with an illness was a significant tipping point in my disability journey. I was able to get my mind back on track, and slowly build up coping skills to function in a way that suited my life again.

At age 15, my PTSD began. This is the one thing I still struggle discussing, and the one disability whose full history I’m going to mostly keep to myself for now. While I wouldn’t be properly diagnosed until age 17, I had never been more disabled in my life – and yet, I still did not consider myself disabled. (One day we’ll talk about it folks, one day.)

At age 16, I was diagnosed with Juvenile Idiopathic Arthritis. You’re probably now thinking “this is it, she’s disabled now, we’ve done it!” If this is you, thank you for the emotional involvement in this retelling – but we aren’t quite there yet. While something deeply transformative happened in that doctor’s office when the rheumatologist poked at all my joints and I knew my life was about to be significantly altered – I still didn’t consider myself disabled. Instead, I considered myself chronically ill – which is a differentiation I still have to explore and learn more about.

[Disclaimer: you are valid if you identify as chronically ill. You are valid if you identify as disabled. You are valid if you identify as both. There is no finite amount of validation here – it’s not pie.]

At age 17, I nearly dropped out of school (again.) My body was practically falling apart, and I just couldn’t keep living my life how I was – I couldn’t keep up. I was on near-bedrest for weeks. After that, I couldn’t return to school. Instead, I ended up meeting an itinerant teacher once a week and teaching myself a few courses (and, petting a lot of therapy dogs at the public library I knowingly arranged to meet my teacher at – disability excellence, folks.)

I was also so lucky to have understanding, albeit pretty confused and concerned, teachers who went out of their way to accommodate me – my band teacher let me show up once a week in the mornings, and I went to a literature studies course right after those band practices.

And as I was negotiating all of these accommodations and explaining my situation to those involved, I began to start using disability in my vocabulary. Soon enough, I was calling myself disabled. Disabled, disabled, disabled.

And for good measure, at age 18, I transferred into adult care and was diagnosed with fibromyalgia. I did not have the heart to leave fibro out of here, narrative flow be damned. 

So, there you have it. 6 years after the first diagnosis, I finally identified as disabled.

Some people will have their personal preferences to not identity this way – which is totally cool – but for me, it opened doors. Most people understand that they don’t understand disability – they will (sometimes) listen to your experiences and what you need. (Or maybe they’re just nosy. Whatever works.)

When you identify as disabled, an even wider community with shared experiences opens up. More resources are available. More accommodations are considered. More things become possible.

A lot of people ask me if I think they’re disabled. And while it is kinda weird for me (I don’t believe myself to be some kind of disability fairy godmother), I understand where they’re coming from.

Disability is confusing. And overwhelming. And personal. So, sometimes it’s easier to seek external validation of your disability identity than to find that validation in yourself.

For anyone out there wondering if they’re disabled, or if they’re disabled enough – that’s your call. Sorry. Only you know how your disability, or illness, or disorder, impacts your life. No one else out there can make that call for you – and no one else out there gets to judge who is and who is not disabled (in the social sense, please don’t go commit tax fraud or something.) 

The takeaway here is that there is no one way to become disabled. There is no set timeline, or requirements you have to meet. If you’re wondering if you’re disabled, I would tell you that you probably are but that would reinforce my alleged disability fairy godmother status.

Instead, I’ll ask you this: do you feel disabled? Do you feel as though your ability to function is negatively impacted with accommodation and support? And how would you feel if you did identify as disabled?

If you felt relief, closure, or peace – it might be time to look at your own disability journey yourself. Depending on how that goes, either try again later, or welcome to the club. I’ll see you around. 

“Differently Abled”

differently abled. diverse abilities. all abilities. diverse needs. special needs. handicapable. 

If you read that list and felt angry/uncomfortable/annoyed – congrats, you’re probably disabled and/or a semi-decent disability ally.

If you read that list and felt accomplished/proud/helpful – you’re gonna want to read this blog. I’ll try to be nice, but us disabled people don’t owe you that. If you want to “help” us – get ready to be uncomfortable, get ready to be challenged, and get ready to learn.

For the same reasons that make disability uncomfortable for others to think about (ie. non-disabled people), “disabled” is now considered, by some, to be a bad word. A mean word. An insult. So, to save us poor helpless disabled people, the non-disableds have gifted us so many wonderful alternatives that truly embrace our comprehensive and intersectional identities. Just kidding! They’re pushing alternatives that no one (for the most part) in the disability community actually wants, without our input or request. We’ll get into this later, but speaking over disabled people to tell us our lives are insulting, to sanitize our experiences, to make them more palatable for non-disabled audiences, is patronizing! and infantilizing! and just generally infuriating! 

I am tried of coddling non-disabled people in their ignorance and degrading attitudes, all so I can warm them up just enough to guide them to the realization that disability isn’t a bad word, while making them feel as though they came to that conclusion all by their non-disabled selves. In disability advocacy, and in life, we have to balance our truth, our experiences, and our dignity with the fragile egos and self-righteous ignorance of people that don’t even try to understand our lives – just to slowly make the world less deadly to us. 

I need the onus, the burden, of challenging ableist behaviours to not fall on disabled people – we’re busy! we’re tired! we have other things going on! (And at the same time, am I really going to trust a non-disabled person to spearhead allyship initiatives?) So while I struggle to balance approachability and the basic truth of my existence, I might get a little heated in the blog today – because we aren’t even at the most frustrating part!

Hearing non-disabled people spew their “diverse abilities” rhetoric is bad enough (clearly.) But when a non-disabled person tells me, a disabled person, to not say the word “disabled”? They don’t only cross the line, they rip it out of the ground! They push the line a mile back and expect the rules to change for them! They literally expect me to accommodate their ignorance, while not even understanding how hard it is to get disability-related accommodations! 

And the best (worst) part? This happens most often in my professional capacity! Where I have been specifically requested to educate non-disabled people on just generally sucking less at being a decent human being. When I am invited into a space to educate non-disabled people, I expect some weird questions. I expect some ignorance. But I still never inherently expect the people I have been invited to teach to tell me how to teach them! (A quick props to students, who make up the majority of my audience – you guys are always ready to learn!)

Let’s take a moment to just try and wrap our brains around this experience. I, a disabled person, am being told by non-disabled people to not call myself disabled. While I am expressing my lived experience as a disabled person, I am explicitly policed in how I express myself to make it more palatable to non-disabled people. And I have to ask: why do they think this is appropriate? what do they think they are achieving? what is so bad about being disabled?

It’s a baffling phenomenon! It’s one that I struggle to understand, and one that is impossible to really explain to others. I can’t tell you how it feels when I am told to sanitize, water down, and degrade my lived experience for the sake of the very people contributing to my oppression – because I can’t even wrap my brain around it myself. The same people that speak over disabled people, are the ones that claim to be helping us! They’re trying to save us from ourselves, when we don’t need to be saved – we need them to stop threatening our lives.

The entire “differently abled” nonsense is such an efficient proxy for how non-disabled people have co-opted disability movements and organizations. Non-disabled people are not only actively robbing disabled people of opportunities to speak for themselves, they are perpetuating a narrative that denies us the chance to even try! While they actively oppress us, they speak for us – and the kicker is, the majority of people will listen to them. The majority of people will listen to non-disabled people on disability issues before they listen to disabled people. And the majority of people will listen to non-disabled people on disability issues and not even see the problem! They will claim to be allies, to be knowledgeable, to understand – and still not feel the need to actually include disabled people in their learning, in their work, in their organizations. 

Many, many more blogs will come about the existential threat that is non-disabled people occupying disabled spaces and actively oppressing us. In short, it kills. It kills disabled people. 

We do not have adequate or proportional representation in our democratic institutions – because non-disabled people claim they can speak on our behalf. We do not have adequate or proportional representation in our democratic institutions – and this has allowed for the abomination of continued institutionalization in the 21st century, to the continued use of long term care homes, to the new forms of institutionalization, sterilization, and degradation that has been deemed charity work. Deemed beneficial. 

When my democratically elected government passed a bill on medical assistance in dying – they did not represent me. They did not represent my community. They represent the very same non-disabled people that profit off of my continued oppression, and the ones who genuinely believe I am better off dead.

And when you believe that disabled people are better off dead, of course you are going to think the word “disabled” is an insult.

A few disclaimers, as is traditional. Anyone can identify with whatever labels they want, they can call themselves whatever they like. For labels like neurodivergent, mad, chronically ill, medically fragile – that’s a whole other ball park that will get a blog post of their own (until then, please god do not rope those labels in with diverse abilities.) 

All disabled people are different – some will prefer differently abled, some will be pro-MAID, some will appreciate the work of non-disabled people. I’m not them – but who am I to tell them how to identify themselves? how to feel? how to think? how to understand the world around them?

But when it comes to non-disabled people and disability? Listen to actually disabled people. Follow their cues. Don’t treat us like monoliths. When in doubt, just ask. But never, never tell us how to express our existence. An existence that you will never fully understand, and one that you have implicitly contributed to destroying. 

Disabled, disabled, disabled. 

Mental Hell-th: Bringing Back My Mental Illness Advocacy

Summary: Carly talks about mental illness and why she still doesn’t really want to talk about it. Advocacy is hard!

Most people don’t know this, but my disability advocacy work didn’t start with physical disabilities – it started with sharing my experiences with depression and generalized anxiety disorder (GAD) at age 14. 

If you won’t ask it, I will: “what happened?”  

And the honest answer that I’m grappling with as I type is: “I don’t know.” 

Or, more reasonably, I don’t know why or how I chose to return to disability advocacy, and alienate the disabilities that got me here in the first place. 

As the relationship between mental illness and physical disabilities hits the disability-mainstream in what feels like all the wrong ways, I felt an obligation to re-incorporate my mental illness advocacy into my work. But a lot has changed since 14, and I have had to do a lot of personal work to understand why I abandoned mental health advocacy in the first place, how I can best advocate for the multiple types of disability I experience, and how I can discuss some very personal and difficult topics under what can sometimes feels like a microscope. 

With my physical disabilities of psoriatic arthritis and fibromyalgia, I know what I’m doing. I understand how the diseases work, what triggers them, and how to cope. They are predictable (most of the time) and manageable (or at least, I know what resources work for me.)

With my mental illnesses, first GAD and depression at age 12 and now GAD and PTSD, I have absolutely no clue what I’m doing! Despite countless hours of research and many ghosted therapists (if the therapist that showed me fainting goat videos for like 15 minutes is reading this – please reflect), I don’t have all the answers – and that foundationally challenges how I frame myself as an advocate, and as a human being. 

I know a lot of us feel as though we’re supposed to have all the answers, while never expecting others to act likewise. But advocates are under an additional pressure – we’re the ones in consultations, panels, interviews, all to explain our experiences with accuracy, clarity, and (let’s be honest) enough censorship to make the whole thing palatable for a non-disabled audience. 

And that’s where we left off. My mental illness advocacy took a nosedive once my PTSD developed. I’ll save the PTSD deep dive for another day (or another year! life is tough sometimes folks!), but basically once I no longer understood what was going on in my own head, I did not feel educated or comfortable enough to get into others’.

While I began to understand my physical disabilities and advocate for them, my personal experience with mental illness was stagnant. I wasn’t getting better, I wasn’t understanding things, and I still hadn’t gotten help. My physical disability advocacy took off while I allowed my work with mental health to be sidelined. 

And now we’re caught up to speed. I still struggle immensely with my PTSD, but I can confidently say I have made incredible progress. I got help, I got a diagnosis, I stopped having flashbacks, and I’m now in an incredibly healthy, loving, and supportive relationship. I can’t remember most of the 2 year period between PTSD development and treatment (also another topic for another time), but I’m sure that Carly would not have believed this possible. On the GAD front, I’m as relentlessly anxious as ever – but I’m learning to accept help for it and work on coping mechanisms instead of treating is as some kind of character quirk. 

The new question I’m asking, and maybe you are too, is “where do we go from here?”

The first step is actively working on understanding my PTSD and GAD better. Not understanding my PTSD took me out of the advocacy game, so I’m going to have to confront a lot of personal brain stuff if I want back in. (This does not sound fun at all! Advocacy work is not easy folks!)

The second step is deromanticizing mental illness. Nothing about my false realities, auditory hallucinations, or hypervigilancy is romantic – it’s scary, and stressful, and challenging. The romanticization that primarily occurred on Tumblr towards depression and anxiety was not a reduction in stigma or a step towards normalization – it was and is a harmful phenomenon with real life consequences. 

The third step is bringing my mental illness and physical disability advocacy together. Only then will I be able to share my personal experiences with disabilities in more accurate, realistic, and comprehensive ways.