Surviving School: How the Education System Failed Me as a Disabled Student, and Why I’m Going Back Anyways

Albert Einstein allegedly said that “insanity is doing the same thing over and over again and expecting different results.” 

Which is to say, I’m about to write a blog about how much K-12 and university education sucked as a disabled student just a few days before heading off to grad school.

Say what you will, no one is doing it quite like me.

By some miracle, spite, actual effort, or some combination of the three, I graduated from uOttawa summa cum laude (which is latin for big, big nerd) this Spring.

I’ve been told graduation is supposed to be this big celebration of your academic achievement or whatever, but that Spring I just kept telling myself “uOttawa can’t hurt me anymore.”

I’d like to think I was at least half-joking. 

While uOttawa gave me a fairly hard time, it would be unfair to say that my issues, grievances, and general disenfranchisement with the education system started in 2020 as I started my freshman year. 

No, they started 16 years ago on the first day of Grade 1, and they really haven’t let up since. 

I’m writing this blog for a few reasons:

  • One: it’s been a bit since I wrote a blog and the guilt has been eating me alive, so this topic feels like an easy target.
  • Two: with undergrad behind me, I figured I should actually process my relationship to education before heading off to grad school in a few days. probably should have done it sooner, but we ball nonetheless.
  • Three: while my career has largely focused on disabled post-secondary students, K-12 plays a major role in shaping which disabled students actually make it to university – and not having the capacity to work on that issue continues to haunt me every day of my life.
  • Four: there are so many kids out there right now that, just like me, are struggling through school in silence while navigating undiagnosed and invisible disabilities.
  • Five: there has yet to be a reckoning for K-12 administrations that target, bully, and push out their disabled students. yet.

With that being said, let’s get into it.

Grade School: Unwell, Undiagnosed, Unimpressed

My Secret Speech Impediment

Unless you’ve talked to me drunk or in French (or god forbid, both), you probably don’t know I had a speech impediment. 

Compound consonants like CH, TR, and SH (which, as you may know, are in a LOT of words) were a bit of a struggle for me. The CHs and TRs would get caught behind my nose and come out silently in an exhale, and I didn’t quite understand where to start to make my SHs not sound like SSs.

Naturally, this was a gold mine for bullying. They would ask me to say “beach”, and I would be confused why they were laughing in my face.

One of the best parts of growing up undiagnosed neurodivergent is that things like this went completely over my head. 

Luckily, by some geographical miracle, I was at a rich person school. And rich person schools have resources. Before I knew it, I was being whisked away from class to meet with some nice lady to play word games, and without realizing, the speech impediment faded away. 

With the speech impediment taken care of, I was able to generally exist as a normal student for the next few years. Yes, I was frequently thrown a textbook for the grade ahead and told to entertain myself during class. Yes, I was known to be very chatty and had to multitask at all times – but also a privilege to have in class. Yes, I could be a little problematic when I thought a rule was dumb or when I was overwhelmed by others making too much noise or not following rules. 

But, you know, normal student. 

Head Start/False Start on Mental Illness

And then, as it so often does, mental illness kicked in around Grade 5. 

I like to joke that I got a head start on the whole depression and anxiety thing as most people aren’t diagnosed until high school, and I guess that’s true enough. But I also genuinely believe we are dismissing so many mentally ill youth as “going through puberty” in a way that sets them up for failure when they finally do get diagnosed. 

Anyways, my head start with depression, anxiety, and an eating disorder would turn out to be a false start. It turns out, all of my symptoms would be explained 5 years later with the ADHD diagnosis we now all know and love. 

But at that time, I just felt like I had too many problems to have even the slightest clue where to start.

So, I went with the obvious response when you don’t know what to do. Withdraw. I started missing a lot of class, and on days when I did bother to show up, I would often leave around lunch.

By the time I got to high school, my mom gave me access to her attendance app so I could sign myself in and out at will. But before that, I had to go through the secretaries. And they sure made sure I had to go through them.

I will never know what possesses certain kinds of people to work in school administration, but I do know these kinds of people love to berate and belittle children. 

While I was clearly struggling, these secretaries decided to make fun of me to my face when I was at my lowest. I was 11. 

I’ll tell you, it definitely did not encourage me to come back to school.

High School: Diagnoses (Sometimes) Make a Difference

C+ for Effort

By the time grade 9 rolled around, I knew my body wasn’t exactly in peak condition. 

I would blame this on a past eating disorder, a lack of stamina from time spent in bed depressed, continued growing pains, and any other form of mental gymnastics I could think of at the time. 

But all these mental gymnastics simply could not help me with gym class.

My attendance had not improved since grade 5, and wouldn’t for another few years – so I wasn’t exactly shocked to receive a mid-term gym grade of C+. However, my average was going to absolutely tank if the C+ stuck around.

So, I talked to my gym teacher. She said that if she only marked me based on the days I was actually in class, I would have an A. 

On the days I managed to show up, I gave a great effort.

On the days I struggled through undiagnosed pain and mental illnesses to show up to school and get side comments on how I’m actually at gym today, I grit my teeth, pushed through the pain I couldn’t yet understand, and gave a class I cared nothing about everything I had. 

And that was worth a C+.

While I did a written assignment and pulled an end-of-term B+, that moment sticks with me. 

The teacher didn’t understand what I was going through, I didn’t understand what I was going through, but most importantly, the outdated graded attendance system didn’t care what I was going through. And it never will.

Oh, the Drama

Grade 11 Drama Class (taken in Grade 10 because my timetable was a nightmare) was a similar attendance-based issue. And let’s be fair, missing rehearsal without explanation did not exactly endear me to the teacher or my group members.

However, there’s a very clear line between consequences for your actions and teacher-sponsored bullying. 

Now, this teacher was equally famous and infamous. Get on her good side, and you’re set. Get on her bad side, you might as well drop the class and then drop dead. In that order. 

Things were looking particularly irredeemable for me until word got to this teacher that I had acquired a bright and shiny new diagnosis that suddenly made me tortured, interesting, and ultimately worthy of being a true artist: Juvenile Idiopathic Arthritis.

Oh yes, with this revered title my absences had instantly become their own performances. My knee brace became a strategically placed costume. My now perfectly understood pain worth inexhaustible sympathy became the object of the perfect character study.

What a complete and utter switch-up from the woman who encouraged other students to gang up on me. 

I tolerated her the same way I tolerate plenty of people now. Focus on the good intentions, painfully smile at their pity, then metaphorically bash my head against the wall the second they turn their backs. 

You can bring a horse to water, but you can’t make him drink.

You can explain your disability, but you can’t make them see you as equal. 

There Was This Dog in Math Class

Sometimes when people ask me how I got diagnosed with ADHD and I’m not in the mood for some nuanced or wise or enlightening or earth-shaking revelation about being diagnosed as a woman, I just say “there was this dog in math class.” Which isn’t entirely not true.

While there had been some exceptionally clear signs of ADHD from a young age, schools really do not care until your grades are dropping or you’re disrupting class.

And I had already tried disrupting class – they just thought it was funny!

So, it was time for the second approach. I didn’t realize it at the time, but I was only good at school because it suited the way my brain functioned, and my brain only functioned that way because of the ADHD being socialized in a traditionally feminine way (aka do not create problems, figure it out yourself, never complain.)

This whole façade quickly dropped once Grade 10 math got to parabolas. (Which I have yet to use in real life.)

Now, I had study skills. I had perseverance. I was (I think) pretty smart. 

But there was something about that god damn parabola that altered my brain forever. Or better yet, how I perceived my own brain. 

My perfect little brain that went a thousand miles a minute and spit out any answer I wanted (more because of pattern recognition than actual intelligence) had become this evil malfunctioning machine that could not shortcut its way through understanding parabolas.

I hit a wall. A curved wall. Plotted on an x and y axis.

Now that my brain wasn’t being constantly fed easy content for analysis, it refused to focus on anything. Anything except a brown labrador that walked the block every day around 10am. 

You really can’t blame me for focusing on the dog. Without it, I was now conscious of the viciously loud and constant noise of my own brain that had finally met its match. 

I genuinely felt like I had officially gone crazy. That I was losing all my intelligence, and that all my future plans had gone up in smoke. 

(Can you believe the last section was about drama?)

Naturally, I refused to accept any responsibility for myself and went straight to the doctor. Surely, if my brain was broken, it could be fixed.

To her credit, my family doctor was way ahead of the curve on destigmatizing ADHD. I walked in, said I was having issues paying attention, and absolutely aced the test she gave me.

Apparently, you are not supposed to ace that test.

I went straight on the same meds I’m still on today, which without counselling or awareness was effectively like throwing gas on a fire. 

With more mental energy and focus, I was terrifying. Quick with a comeback, no tolerance for distractions, and deeply irritable when the outside world somehow drowned out my inside world. 

I’d love to pretend I figured out this whole concerta-sponsored irritability nightmare fuel pretty quickly, but it took until the COVID lockdowns for me to make peace with my own mind. 

But we aren’t quite there yet.

That One Time They Tried to Kick Me Out of High School

Even with the diagnoses, my attendance had not picked up.

This sounds deeply counter-intuitive, unless you’re familiar with the drugs used to treat arthritis. Microdosed chemotherapy, steroids, biologics that change the composition of your immune cells. 

One day I’ll rank all the drugs I’ve done for one of our more fun blogs.

By the time Grade 11 came around, I was struggling. The meds made me incredibly nauseous and constantly fatigued, to the point where I felt more zombie than human.

Apparently zombies are still under the jurisdiction of the school’s attendance officer.

Despite somehow still being a straight A student at this time (largely due to my teachers going above and beyond to email me assignments, shout out Doc Wat), the Vice Principal called my mom and myself in for a meeting.

Having absolutely no clue what was about to happen, I walked in with an open mind. To me, the attendance officer was just there to scare us into going to school – like an academic boogeyman. They didn’t have any real power.

Apparently they did. Again, despite being a straight A student, I was explicitly told I could no longer remain in mainstream schooling.

Oh yeah. A straight A student was getting kicked out of high school.

Luckily, I had no clue what was going on. And when this happens, I ask what the options are. 

In what would become a signature move, I quickly confused everyone in the room enough until I had exactly what I wanted: a customized Frankenstein education plan that would allow me to attend one morning class three times a week (conveniently coinciding with band practice, which I was holding on to for dear life), and meet with an itinerant teacher once a week at the public library.

I even managed to schedule the itinerant meeting right after the therapy dog session at our central branch. 

While I thought it was going to be completely embarrassing to be known as a semi-drop out at school, it turns out no one even noticed my Frankenstein’s monster of an education. People saw me at band practice and in the halls first thing in the morning, and just assumed I was in different classes.

I was getting away with murder.

And, thanks to Itinerant education, I was able to finally apply myself to the self-taught lesson packets and fly through courses way faster than I had any right to – ultimately freeing up additional spares for my final year of high school, which I planned on attending full-time.

Magnum Opus

By some miracle, things were actually looking up my senior year of high school. We had 20/20 vision we would joke, as the upcoming 2020 seemed so clear…

I had speed ran countless arthritis treatments until finding a manageable balance of methotrexate (microdosed chemo) and Enbrel (a biologic that apparently has me banned from donating blood the rest of my life.) My ADHD meds were working. I was somehow, slowly, starting to feel better.

Was my attendance the first semester perfect? Absolutely not! This was still me we’re talking about. But it was better – and everyone noticed.

At this time, I was also taking the Grade 12 Creative Writing course. While I had enjoyed English classes way more than my peers, I had never really considered myself much of a writer. I really only took it because I needed a credit, it fit my schedule, and everyone’s favourite teacher taught the course.

Somehow, I actually started to like creative writing. With an ADHD brain that was becoming less nightmarish by the day, and that teacher openly sharing his own experience with ADHD, it became almost fun to apply my “new” brain to creative challenges. 

Parabolas still weren’t my thing though.

The biggest creative challenge I faced was developing my own end-of-year independent project, which he called a Magnum Opus. While I initially rolled my eyes at the assignment and pretended not to care, something genuinely awakened inside of me.

My end-of-year project (which I still will not refer to as a Magnum Opus) was a poetry book called Body Betrayal – which paired poems on ADHD and arthritis with pantone colour swatches and a custom Spotify playlist.

Writing it was cathartic, and reflective, and challenging, and enriching, and allowed me to finally put years of silent struggle into words for the very first time. 

And as you can tell, once I started to put my experience with disability into words I have never really been able to stop.

The Best Semester Ever and Nothing Will Go Wrong, Obviously

Now, the first half of Grade 12 was my best academic performance yet. But that was before I was finally old enough to receive treatment for my fibromyalgia.

The difference was instant and obvious. I had my brain back. I had my body back. I had my life back.

I went to school. First one day at a time, then a whole week. 

While the other kids had stopped making fun of my attendance when they found out about the whole arthritis thing, they had now taken to cheering me on. 

Then another week went by.

Still there.

Another.

I made it 40 days. 

40 whole days without a single absence. An unimaginably low bar for some, and an unimaginably high bar for me. 

Everyone wanted me in a group project, now that they knew I would show.

While my band director was initially apprehensive about me becoming section leader given my past absences, he went on to select competition pieces based around my section who were improving by the day. 

And to think, just a year ago, they tried to kick me out of school.

And then – you know what’s next – we were about to have the longest March break in history. Three weeks of vacation, with no homework or tests or makeup classes!

March break ended up being a lot longer than three weeks…

University

I’ll keep this section short, since a lot of it has been documented already and I don’t want to beat the dead horse.

(Horse, GG, uOttawa? Give me some credit here folks.)

Also, like most of my blogs, this is getting pretty long.

Despite the pandemic, I moved to Ottawa in September 2020 to begin the first year of my undergraduate program in International Development, assuming class would be moved in-person in a few months and I would not have to brave an upended housing market at full demand.

While online school lasted longer than anyone imagined, it turned out to be the perfect set-up for me, personally speaking. 

Chasing the interrupted academic high of the second semester of Grade Twelve, I was able to completely throw myself into my studies – without wasting time and energy on things like commuting and meal prepping. 

I quickly learned that if I turn my camera off during Zoom lectures, I would quickly do anything but pay attention. So, I became the one person in every lecture with her camera on. Worse, I nodded to signal I was paying attention and to inconspicuously stim.

By my fifth year, I was still known as the girl who had her camera on.

Around halfway through second year, uOttawa began transitioning to hybrid courses – allowing students to choose between attending online or in-person.

Thriving under online classes but aware I was probably missing key psychological milestones, I was able to gently ease myself into the demanding lifestyle of university education and began to enjoy in-person classes.

That was, until there were only in-person classes.

Despite spending thousands of dollars on equipment and training staff on how to use hybrid equipment, it feels as though post-secondary education as a whole continues to have a hybrid amnesia. 

I have documented the betrayal, and the rage, and the frustration I felt at this time. And I am very comfortable not revisiting it.

But one thing I haven’t explicitly visited is the disconnect I felt between reality and academia. 

Despite studying international development (improving health, education, and employment outcomes for the most marginalized) and conflict (the most mass-disabling man-made event to date) – neither program adequately acknowledged disability, let alone meaningfully incorporated it.

While I was very lucky to have peers and profs encourage me to incorporate disability in assignments, class discussions, and group projects – I felt incredibly disenfranchised and disillusioned. 

How could I possibly care about these studies that don’t care about me? 

How can I consider this education worthwhile when there are such glaring knowledge gaps?

To make matters worse, I was working my dream job with the National Educational Association of Disabled Students. My day job was disability, my personal life was disability, I was disabled. 

There was no escaping disability, unless you looked in any course syllabus.

Despite this, I convinced myself that a solid academic background in international development and human rights would help my career in disability. And it already has. But the whole time, I had to push through this overwhelming feeling that this program, this field, this career path I had my heart set on was just not meant for me. Not meant for people like me.

Reader, this is obviously melodramatic bullshit dredged up from some of my lower moments. This field is very much so for people like me, and everyone is about to get real disabled from conflict or climate change or communicable diseases anyways. Basically, I’m way ahead of the curve.

But that doesn’t erase how abandoned I felt. So, I lashed out the way any rational person would: I got way too into my job.

Professors, if you are reading this, I am so sorry. None of this was personal. But I was pretty much working non-stop during every lecture. 

Was I paying attention? Yeah! 

Was I taking notes? Absolutely! 

Were many other students distracted because I was putting together a marketing plan or instagram advertisement on my laptop? Definitely.

This heavy dependence on multitasking to juggle a technically impossible workload would later result in burnout so bad I had to quit my job, but I’m gonna save that topic for a later date.

At this point, if you’re still reading because wow this is getting long, you might be asking “how was your attendance?” 

To which I would answer, “bad, but for new reasons!”

In what can only be described as perfect irony, I was missing a lot of class to go to other universities and talk to disabled students about their experiences as part of my work for NEADS. And I mean a LOT of class.

I also got struck down by a fun new mystery disease in my final year, which turned out to be Hashimoto’s – an autoimmune thyroid disorder. Turns out autoimmune disorders are not like chicken pox…

Between this and an absolutely shot immune system from years of immunosuppressants, a particularly bad case of flu led me to miss 30% of classes – or $900 in tuition. 

feel sick writing that.

Of course, graded attendance was coming back to bite me in the ass too. As if nearly $1k in educational losses wasn’t enough. 

Half of my classes that final semester had graded attendance, and I had a nerdy average to maintain. To this day, I have no clue how I pulled it off. Desperation, Dayquil, spite? 

My thoughts and feelings on graded attendance remain the same, so I’ll just leave you with this conversation:

Prof: “You were an excellent student. I just wish you were at more classes, you always had something to contribute.”

Me: “[Prof], I wish I was at more classes too.”

Grad School: The Definition of Insanity

Returning to the alleged Einstein quote (which turns out is very contentious but there’s no way I’m changing the intro now), you’re probably baffled as to why I can write all of this about the state of education and all the many ways in which it has failed me – just to go to grad school in a few days.

How I can come back from that gym class C+, or missing 30% of my final term of undergrad.

How I can dive right back into an academia which ignores, excludes, and exploits disability.

Because those moments and others’ (in)actions don’t define me. 

Because I genuinely love nerding out about economics, and governance, and human rights, and yes, disability. 

Because I found a program that lets me finally embed accessibility and disability into my studies. With actual courses, not just DIY leg work.

Because I get to attend the most disabled university in Canada, if not the world. 

And because education is supposed to be for everyone.

This Fall, I’ll be attending Carleton University for a Masters of Arts in Political Economy, with a specialization in Accessibility. 

I’ll take classes on social policy, and universal design, and the politics of health care, and lots of other nerdy stuff!

I’ll TA classes on international development, and maybe be the representation I never had. 

And for the first time in 8 years, I’m going to put school first. 

I have effectively put my career in the disability non-profit sector on hold to either be the definition of insanity or to challenge it.

Which is terrifying, and nerve-wracking, and exhilarating.

And I can’t wait. 

Canada at the CRPD Committee

Welcome to the final instalment of the Blogging to Berlin Series, where I attempt to cram as many blogs on Canadian disability rights and accessibility legislation as I can right up until my plane takes off for the Global Disability Summit.

While I was originally going to keep it to three blogs, Canada’s recent appearance before the UN Committee on the Rights of Persons with Disabilities in Geneva is simply too good to leave out. Unfortunately, the whole process is honestly super confusing and hard to summarize – but that’s what I’m here for!

So buckle up, because I’m going to do my very best to explain what Periodic Reporting is, summarize key reports to the Committee, share some highlights from the actual hearing, and suggest some practical next steps in anticipation of the upcoming Concluding Remarks.

Trigger Warning: Brief Mentions of Disability Rights Violations (Institutionalization, Sterilization, Detainment, Forced Treatment, Medical Assistance in Dying)

Ratification

Before we get into the Periodic Reporting process, we’ll need to start with understanding how ratification works. Stay with me.

When a country signs on to a UN Convention, they become a State Party – which means they accept certain obligations and responsibilities detailed in the Convention they just agreed to follow.

Once a country is a State Party, they must begin the ratification process: this means domestic actions that incorporate the international convention into a country’s law. This can be done in a few different ways. 

Most effectively, States can ratify international law through a large, national bill like the United Nations Declaration on the Rights of Indigenous Peoples Act, which explicitly makes all articles of the international law legally binding in Canada!

More commonly, States will pursue a patchwork approach of reforming old, outdated laws and introducing programs and policies designed to gradually implement more of the Convention domestically. In Canada, we’ve seen initiatives such as the Disability Inclusion Action Plan and Canada Disability Benefit address parts of the Convention, with varying degrees of success.

Additionally, courts at all levels can choose to claim rights provided by international conventions, even if they haven’t explicitly been incorporated into domestic law yet. Once a court rules in favour and recognizes rights from an international convention, future rulings must take note of this and more often than not comply. 

(For my international friends, Canada has TWO legal systems and I do not have it in me to get into it here.)

Periodic Review

Alright, let’s start with our key players.

As part of its obligations as a State Party, and to help with the ratification process, signatories to the UN Convention on the Rights of Persons with Disabilities (CRPD) must submit a report detailing their ratification progress to the Committee on the Rights of Persons with Disabilities and attend an in-person committee hearing in Geneva.

The Committee also considers reports from National Human Rights Institutions (NHRIs) and civil society organizations, both of which can also attend the committee hearing in Geneva. 

Some countries, including Canada, will fund a coalition of civil society organizations to develop a “Parallel Report”. While funded by the government, they do not control or guide any of the content – which means that Parallel Reports are often more critical than the official government report!

Now that we know our key players, let’s attempt to break down the periodic review process:

  1. After the previous Periodic Review, the Committee issues a number of Concluding Observations. These will highlight impressive areas of progress, note continued or new areas of concern, outright condemn certain government actions, and provide a number of highly relevant and useful suggestions for the State Party to work on implementing.
  2. After a few years (COVID-19 messed up the scheduling), the Committee will inform the State Party its due for a Periodic Review, and share a List of Issues Prior to Reporting. This List covers all articles of the CRPD, and requests information from the State on what they’ve done to implement certain clauses. 
  3. Once the State Party has received notice and the LOIPR, they begin developing their Report to the Committee. The Report must answer every single issue or question raised by the Committee in the LOIPR with concrete examples and in-depth references.
  4. National Human Rights Institutes (NHRIs) and Civil Society Organizations (CSOs) will also generally begin work developing their own reports to the Committee at this time – but much of the work for civil society occurs in response to the published State Party report.
  5. With all reports finalized and submitted to the Committee, the government sends a delegation to Geneva for the hearing. This often includes high-level bureaucrats and provincial officials, with federal political officials’ participation greatly fluctuating. 
  6. During the hearing, the Committee questions Canada on its ratification progress – drawing from the government’s report, the NHRI report, and CSOs reports. The hearing is livestreamed, and the questions and responses are all summarized and published online.
  7. Following the hearing, usually within 1-2 weeks, the Committee will issue their Concluding Observations – and State Parties are expected to get right to work implementing their suggestions!

Deep breath, we made it. 

This whole process was INCREDIBLY confusing for me at first, but I hope this boils it down into a more approachable step-by-step explainer! 

In summary, Periodic Reviews are when the CRPD Committee questions a country on how it is implementing the CRPD, and provides recommendations for future action. 

NHRIs and CSOs are invited to the party to provide a critical perspective and supply additional information, but it’s mostly a dialogue between the country reviewed and the Committee.

Background Information That Is Important I Promise

Because previous Concluding Observations and the List of Issues Prior to Reporting basically shape the structure and content of a country’s Report and its review, I’m going to attempt to break down what you need to know.

Canada’s last Periodic Review was in Spring 2017 (the 2021 Review was postponed because of the pandemic, they didn’t ditch anything I promise!) – which means this Report worked with Concluding Observations from 2017!

In terms of key concerns, the Committee criticized Canada for continuing to uphold substitute decision-making, where non-disabled people speak for disabled people without their consent. Canada has been incredibly stubborn about reforming their guardianship laws in favour of supported decision-making, which is essentially just a more accessible and inclusive approach to how disabled people navigate the legal system.

The Committee also criticized Canada on a number of key issues: institutionalization, segregation of disabled children in school, the involuntary detention and treatment of psychosocially disabled people, and coerced and unwanted sterilization in medical settings.

The suggestions were fairly straightforward: remove outdated laws, develop monitoring mechanisms for MAiD and institutionalization, publish national policies on inclusive education and employment, and create a CRPD implementation monitoring body with full participation from civil society. Remember these suggestions, because you are definitely going to see them again, and again, and again.

Flash forward to 2019, when the Committee provides Canada with its List of Issues Prior to Reporting. There’s a lot of overlap with the Concluding Observations (suggesting slow progress towards ratification) – so I’ll focus here on more in-depth or new points raised.

By 2019, the Committee had really embraced an intersectional approach to ratification, and paid particular attention to children, women, migrants, asylum seekers, indigenous persons, and 2SLGBTQIA+ persons with disabilities. 

Additionally, the Committee had generally been pushing all States to pay more attention to persons with intellectual and/or developmental disabilities, and autistic people – noting they were often excluded from disability rights-based programs. 

There was also a clear emphasis on the need for quality, timely, disaggregated data on disability – which generally means recent, relevant, appropriate, accessible data that examines how different groups of disabled people are impacted by issues differently.

In Canada, our survey on disability occurs every 5 years, and largely focuses on employment, education, income, and housing for persons with disabilities ages 15 and up. And while it occurs every 5 years, the general public is still working with the 2017 Survey, as more recent ones are behind what I am told is a SEVENTY THOUSAND DOLLAR PAYWALL. 

Do you have seventy thousand dollars? I don’t! 

(If you do hit me up though…)

The Reports!

I know what you’re thinking – “how are we STILL not at the hearing?” But you’re reading this. Imagine writing this. My whole day is cleared. 

I will say this, though: the Reports are where the majority of the work and content is. These are lengthy, nerdy, in-depth reports with tons of data and references and sources. They are also incredible resources to inform your own advocacy work, projects, and briefings – if you have it in you to trudge through them.

If you don’t though, you’re in the right place! Hopefully. 

While any civil society organization can submit a report to the Committee for their consideration, I’ll focus on Canada’s report, the Canadian Human Rights Commission’s (CHRC) Report, and the civil society working group Parallel Report.

I’ll also be opting more for a vibe check than a comprehensive breakdown, because if I even attempt to do that, I will have a comprehensive breakdown.

So here goes.

Canada’s Report (Read Here)

Canada’s Report, as required, responds to the Committee’s List of Issues Prior to Reporting with all the work they’re doing to implement the CRPD.

However, in true Canadian fashion, some believe the Report glossed over key issues and chose to emphasize the more positive aspects of ratification, instead of explicitly noting where there is significant room for improvement. 

As Canada uses a identify, remove, prevent approach to remove accessibility barriers at the federal level, this lack of identification is frustrating.

Further, the majority of examples of implementation were from the provinces. Now, this makes sense to a certain degree: provinces in Canada are responsible for key areas like education, employment, and disability income supports. 

However, there was a clear emphasis on provincial actions that prevented a better evaluation of federal initiatives. This can also be seen by some as the federal government pushing responsibility for CRPD implementation onto the provinces.

While I could go into all the federal initiatives underway (but won’t), I do want to note that some of the initiatives mentioned as CRPD ratification did not explicitly include disability, but emphasized intersectionality.

Here’s why this is different, and why it’s important. 

While disability is an identity factor and a marginalized group part of intersectionality like all other equity-denied groups – disability is the only group requiring modifications to the built environment, processes, and procedures. 

These modifications often require additional financing and organizational flexibility, and disability-specific needs are rarely addressed by a “regardless of” approach. 

It’s great that I’m entitled to services regardless of my disability. But it’s a completely different thing to be able to access services that accommodate my disability. 

I’ll leave it there for the Canada Report, but I would encourage you to read it if you have the time and capacity to see what areas the federal government is prioritizing, and what programs it chose to highlight.

Canadian Human Rights Commission’s Report (Read Here)

My initial impression of the CHRC Team was already very positive – they’re incredibly personable, responsive, and cooperative, and I wouldn’t say it’s a stretch to claim that they’re well respected by civil society.

But this positive impression went absolutely through the roof when I read their report.

Now, I want to make this clear: the Commission is small. And underfunded. And tasked with monitoring CRPD implementation without the capacity to effectively to do so. 

So while their overall monitoring of CRPD implementation is obviously not where we want to be (and I don’t think they want to be there either!), this report goes HARD.

Three things stand out to me: 

  • how the Commission is able to be critical in a constructive way
  • how they reference specific events and reports for increased accountability
  • and just how well formatted and communicated their findings were

Hear me out on that last point: you can be doing the best work in the world, but it doesn’t help anyone if you aren’t communicating it. 

If you read any document referenced in this blog, read the Commission’s report.

The Commission hits the usual suspects: employment, education, decision-making, community living, income, and so on. 

But they also highlight some interesting areas: how disabled people disproportionately experience homelessness, how systemic discrimination creates a higher unemployment rate, how the climate crisis disproportionately impacts disabled people, and how PWD are over-represented in prisons. 

The Commission also included its own recommendations for Canada’s ratification throughout the Report, so here are a few of my personal favourites:

  • Canada must address systemic barriers to accessible education, including a more comprehensive approach to accommodations and learning supports, and coordination to end the use of seclusion and restraint. 
  • Canada must improve timely access to appropriate and effective mental health and addiction care in a holistic way, including through poverty, housing, and food insecurity relief.
  • Canada must ensure services for Indigenous people with disabilities are equitable, adequate, and culturally appropriate – based on their distinct culture and identity and provided within their communities.

I also just love how they call out Canada’s patchwork approach to CRPD ratification, and call for a foundational structure for monitoring and implementation with full participation of civil society. 

Canada loves to say it punches above its weight in international affairs. I will now be co-opting this to say that the Canadian Human Rights Commission is the real one punching above its weight. 

Civil Society Parallel Report (Read Here)

Full disclaimer, I got to be a part of this one!!

As I previously explained, the government funded a handful of organizations to create a working group of civil society organizations tasked with developing this Parallel Report.

Our internal process consisted of sub-working groups for each Article, feedback from all working group members, further edits, and final submission to the working group secretariat. 

I am so grateful to have had the opportunity to lead our sub-working groups on Article 8 (Awareness-Raising) and Article 21 (Access to Information) – and more importantly, so grateful that my colleagues had enough faith in me to let a then-21 year old lead this work!

(Yeah, it was a long process.)

Process aside, I want to highlight the extensive use of footnotes to elaborate on ideas, link to concrete actions, and cite references. If you check it out yourself, you’re gonna see it’s like 60% footnotes. 

Why? Because civil society submissions have a limited word-count – but the word count does not include footnotes. 

(We had a field day, what can I say.)

Fortunately for me, the Report summarizes its key themes itself: 

  • increased funding and individualized services enabling independent living in dignity
  • developing an effective CRPD-specific ratification monitoring mechanism with civil society
  • and the need to abolish harmful and outdated laws such as institutionalization, forced treatment, and Track Two MAiD (solely on the basis of disability, not foreseeable death)

The Report also offers its own recommendations for further implementation:

  • Enact a comprehensive national action plan to implement the CRPD in coordination with PT governments and disabled persons organizations, including legislative reform and increased investments in disability services.
  • Ensure youth with disabilities are engaged, and that their feedback is reflected in the development, implementation, and monitoring of the laws, policies, programs, and services concerning them. (I didn’t even write this one!)
  • Repeal Track Two MAiD, and investigate and fully address the root causes and systemic inequality driving PWD to seek MAiD.
  • Abolish all legislation violating and denying the decision-making rights and legal capacity of persons with disabilities, in favour of a well-resourced framework facilitated supported decision-making.
  • Replace discriminatory legislation, policies, and practices facilitating detention, discipline, and coercive and involuntary treatment based on impairment or disability in favour of a human rights-based approach that prioritizes self-determination.

The Actual Review

Alright, home stretch. We made it through the reports. We are finally at the CRPD Committee hearing. 

If you’ve made it this far, congratulations.

Delegation

In my opinion, you can tell a lot about a country’s priorities based on who they send to different conferences, negotiations, and reviews.

This year, Canada’s delegation was headed by Elisha Ram from Employment and Social Development Canada (who is absolutely lovely to work with by the way), and included representatives from a handful of federal government departments – Indigenous Services, Refugees and Citizenship, Statistics, Global Affairs, Heritage, and Justice. 

3 of 10 provinces (Manitoba, Saskatchewan, and Québec) also sent representatives – which is odd, when you consider 8 of 10 provinces have accessibility legislation.

Notably, there were no federal-level political officials. Quite honestly, I’m not the most knowledgeable about this whole prorogation thing, but I’m pretty sure Ministers could still attend events and reviews in their official capacity. 

However, with the government’s political party leadership race and an upcoming federal election, I’m not shocked they chose to emphasize domestic priorities.

(Learning about electoral incentives has permanently altered how I approach advocacy work. Someone please remind me to write a blog on that one day.)

That being said, Canadian civil society made the trip – with representatives from Arch Disability Law, Inclusion Canada, the Canadian Council on Rehabilitation and Work, the National Network for Mental Health, the ASÉ Foundation for Black Canadians with Disabilities, and so on. 

And this was despite the Zero Project occurring about two weeks earlier in Austria, and the annual UN Conference on the Status of Women in New York occurring at the same time!

Proceedings

While the proceedings occurred through two 3-hour sessions, they are surprisingly hard to summarize.

I first want to highlight how iconic the CRPD Committee is, quite honestly. Markus Schefer and Rosemary Kayess in particular did not hold back – and weren’t afraid to call Canada out for resorting to prepared statements and not constructively engaging in dialogue (which they did, more than once!)

Of course, Canada’s nominee to the CRPD Committee, the incomparable Dr Laverne Jacobs, was excused from this hearing. Which means I’ll have to watch another committee hearing to watch her in action – from her tweets alone, I hear she also isn’t afraid of asking the hard questions.

Going back to the governmental delegation, the reliance on prepared statements was frustratingly felt throughout the proceedings. While some statements were relevant, well-delivered, and informative (shoutout Catherine Ivkoff’s points on climate change and gender-based violence) – there was this very odd disconnect that I believe really limited how relevant, and even transformative, these hearings can be.

The usual suspects were again brought up: education, employment, MAiD, disability poverty, data collection, and decision-making. However, there were also less expected discussions on the role Canada plays in weapons exportation and mass disabling armed conflict, the decision not to appeal the Québec MAiD ruling to the Supreme Court, and how Canada’s immigration system continues to discriminate on the basis of disability.

One moment that particularly caught my attention was when, after Canada shrugged off a number of questions on the basis of federalism, multiple committee members from federalist countries called them out. 

This process is really important and serious, of course – but hear me out: a courtroom-like drama about CRPD Committee hearings. We just need a little editing, because the drama was there. I felt like I was watching RuPaul’s Drag Race with some of the (well-delivered and serious, of course) clap backs. 

Again, very serious process. However, we could call it awareness-raising.

Back to the actual hearing, I don’t really have any insightful takeaways here. While the Committee asked some great questions, there was a lot of overlap from the LOIPR and 2017 Concluding Observations. Not their fault, of course, but it shows how slow implementation progress can stall more innovative action and prevent timely responses to emerging issues.

What’s Next?

So glad you asked. 

We’re now waiting for the CPRD Committee to issue their 2025 Concluding Observations – which provides a fantastic resource to government in guiding future policies and initiatives, and an even better resource to civil society in their advocacy work.

However, again because of slow implementation, I’m honestly not expecting anything too exciting. What needs to be said has been said, several times, in many different formats. 

These Periodic Reviews are very much what the country makes of it: if they commit to authentic and honest dialogue and focused implementation strategy, they’re going to get more niche questions and illuminating insights.

If a country treats these PRs like PR (public relations), relies on prepared statements, and shrugs off important questions – it’s going to get very repetitive, very fast.

Now, obviously, I am all in favour of Periodic Reviews. Even if they get repetitive, it provides a wealth of documented evidence on government action or inaction – and can help chart the rise and fall of government attitudes and priorities towards disability. 

Looking at the CRPD Committee’s line of questioning and recommendations already published from the CHRC and CSO reports, it wouldn’t be unreasonable to expect Concluding Observations around a monitoring and enforcement mechanism, a national implementation framework, a shift towards supported decision-making, appealing Track Two MAiD, an inclusive education strategy, and a deinstitutionalization framework. 

(Note to self: create Concluding Observations Prediction Bingo Card.)

But that’s what should be done. Based on the current state of Canadian politics, here are my suggestions on what could, more feasibly, be done. 

With the recent abolishment of the Ministry of Persons with Disabilities, the Disability Advisory Group is now without a home and may potentially cease to exist. Further, with no Minister dedicated to disability, more ministers may be expected to incorporate disability into their own mandates.

I see this going one of four ways: 

  • one ministerial advisory group shared between several ministers
  • a handful of smaller and more specific ministerial advisory groups 
  • re-introducing the Standing Committee on the Rights of Persons with Disabilities from the 90s
  • abandoning a consistent and predictable approach in favour of one-on-ones and ad-hoc consultation processes

While the Committee, CHRC, and civil society have all repeatedly called for a CRPD-specific implementation body, the government appears quite insistent that the Federal-Provincial-Territorial Human Rights Forum is adequate. (I have been, and it is not.)

With this continued refusal to support a federal body, here are a few alternatives:

  • civil society can attempt to build a working group monitoring CRPD implementation among themselves, though this is particularly challenging with uncertainty around non-profit funding in this economy
  • the Canadian Human Rights Commission – if granted additional funding past their initial 5-year package (taking a moment to reflect on how wack it is they have to apply for additional funding for such a critical mandate) – could host quarterly roundtables with civil society organizations to at the very least discuss CRPD implementation
  • the FPT forum can host ad-hoc roundtables specifically on the CRPD, and make an increased effort to invite Disabled Persons Organizations

In terms of the legal need to repeal certain laws, such as substitute decision-making and psychiatric holds (involuntary detention of the psychosocially disabled), this again can go a number of ways:

  • without adequate public and electoral pressure, the government will not act on recommendations to appeal laws violating the CRPD
  • with enough pressure, the government could pursue parliamentary reviews of these laws with some consultation of civil society
  • with enough funding and capacity (which is already so strained), disability organizations could pursue Charter Challenges against these outdated laws

Carly Commentary

And there you have it, the final feature of our Blogging to Berlin Series. 

I won’t lie, this was way too much fun. 

The Series was a result of a policy brief I developed for both participants at the Global Disability Summit wanting to learn more about Canada’s disability rights and accessibility legislation, and myself to ensure I could speak to Canada’s disability rights landscape from a more informed perspective. 

But it then became something much more than that.

Policy, programs, and legislation at any level impact our lives. Yet for so many of us, we find the whole legislative process too difficult to follow and contribute to. And for disabled people, we often aren’t even consulted in the decisions that impact us.

When I started work at NEADS (love you guys), I had the very unique privilege of getting to dive into disability rights and legislation as part of my paid employment. And from this opportunity, I was increasingly able to leverage policies and legislation to support our advocacy work. Now, I get to use it to share where Canada is at with delegates from around the world!

Call me a nerd all you want, but learning about provincial, federal, and international law gave me the confidence I need to better represent myself and my community. While they may just be words on a page to some, to me, they represent undeniable claims to fundamental rights and freedoms. 

But it’s bigger than just policy: accessible education and awareness is empowering. And all too often, it’s hidden behind paywalls, or embedded in way too wordy documents (if you thought this blog was bad, check out some of the raw legislation), or just not properly advertised. 

Canada, as part of its CRPD obligations, has a responsibility to educate the public on disability rights and share information in an accessible way. In my opinion, this is the most important step to ratification. 

When we know our rights, we can claim them. When we know what is possible, we can achieve it.

So thank you for making your way through the Blogging to Berlin series, and bearing with me as I balance the more nerdy advocacy work with the fun stuff!

You can definitely expect a more personable post-Berlin update summarizing how the conference went, and some (hopefully!) fun and informative blogs as I try something new and take a few months off of work this Summer to spend time with family and prepare for grad school.

Nothing About Us

I’m having a moment. More likely a meltdown. All because of a media release on access to sexual and reproductive health. 

Before we get into why I am an absolute wreck right now, let me make three things clear:

One – I am a firm believer in access to sexual and reproductive health. To abortion, whatever the reason for it. To quality sexual and reproductive health information. I am proudly pro-choice. 

Two – I will always support other marginalized communities in their advocacy work for better access, opportunities, and outcomes. 

Oppression is not like pie – there’s more than enough to go around.  Public opinion and support and funding are all also not like pie – we as marginalized communities do not have to fight each other for our slice – we can just bake a bigger pie. 

And when one marginalized community benefits, we all benefit. Our struggles are intertwined, our people are diverse and deserve to feel fully welcomed in their communities.

And three – I don’t believe critiquing “good” things makes them any less good. In fact, I believe we need to critique these good, progressive measures to ensure things keep getting better for everyone. 

If we don’t critique things, if we settle for things the way they are – things won’t get better, they’ll just stay the same. And I’m here to tell you that I can’t survive more of the same. So many disabled people will die if we keep having more of the same. And the same is the continued marginalization and exclusion of disabled people.  

From progress. From funding. From opportunities. From decision-making positions. From meaningful inclusion in policy making and program design. From education. From employment. From society.

Now that that’s all been said, let’s unpack why I am mid-meltdown.

As someone with a uterus (we are not doing transgender, non-binary, and genderqueer erasure here!), I have a bit of a stake in sexual and reproductive health.

Actually, everyone does. You’ve all been born, right? (Not that I should have to argue the whole “everyone should care about this” angle but that is where we are right now.)

And as someone who is disabled and has a uterus, I’m pretty passionate about accessible and disability inclusive sexual and reproductive health.

So you might be able to imagine how I felt after reading a media release announcing significant increased funding for sexual and reproductive health for marginalized groups that didn’t mention disability once.

Now, I won’t list the marginalized groups that were listed because that perpetuates an us vs them rhetoric. It’s not marginalized group vs marginalized group, it’s all of us vs systemic oppression.

What I will list are a few words frequently mentioned throughout: 

  • “barriers”
  • “access”
  • “stigma-free”
  • “previous experiences of discrimination with the health care system” 
  • “accessibility of information and services for underserved populations”
  • “the right to make decisions about their own bodies” 
  • “increased risk for poorer sexual and reproductive health outcomes.”

It’s hard to describe what this feels like to someone who isn’t disabled, but to grossly oversimplify it: it’s almost like being picked last for dodgeball, but you aren’t even picked at all. And no one seems to notice. Or at least, they don’t speak up. 

(And this metaphor is unfortunately not so metaphorical – plenty of disabled people aren’t allowed to participate in gym class. Or they’re not invited out. Or they aren’t even allowed to leave their homes.)

So, here I am, not playing dodgeball. 

Less metaphorically, here the disability community is, once again, not being included in funding and programming designed to make programs more inclusive and accessible for marginalized groups.

And this one media release, while devastating for its disability exclusion alone, was a boiling point for me. 

Already in this awful little exclusionary pot was the fact that disability was almost excluded from the anti-discrimination clause of the Canadian Charter of Rights and Freedoms. 

That the UN Convention on the Rights of Persons with Disabilities passing 61 years after the UN was founded. 

That Canada’s first federal accessibility legislation passing less than 4 years ago.

That most provinces and territories don’t even having accessibility legislation. 

That countless equity, diversity, and inclusion foundations, programming, and policy actively exclude disability. 

That actual human rights programs and offices and lawyers don’t adequately include and incorporate disability. 

Since we’re rolling with this boiling point pot of water metaphor, let’s talk about that obnoxious steam that fogs up your glasses and hurts your hand while you’re stirring – the accessibility washing.

Accessibility has finally seemed to enter mainstream discussions. And before you get all excited thinking this means great things for disability inclusion, I’ll have to stop you right there. Because accessibility is being used to mean affordability, or better outreach, or better responsiveness. 

Is that by definition correct? Technically! 

Is it at the very least a little messed up to hijack a word commonly associated with the disability community to exclude them from measures they could benefit from? Absolutely!

And this awful phenomenon is cruelly complimented by organizations, academics, and governments using accessibility to gloss over disabled people entirely! 

Instead of discussing harassment, discrimination, ableism, and stigma, it’s easier and more comfortable to discuss barriers in the built environment, communications, and technology! 

But barriers are created, maintained, and perpetuated because the world does not think about disability! So us disabled people are stuck in this gaslight-y purgatory where everything is about us, but nothing is for us.

Yes, accessibility benefits everyone. But by emphasizing this universal benefit over addressing the very real discrimination and barriers disabled people face, accessibility risks coming at the cost of further marginalizing disabled people. 

We are moving in the wrong direction, unrooted and unguided due to our conscious choice to ignore disability. 

And just like sexual and reproductive health services, I’m glad progress is being made – but I sure as hell have every right to criticize the fact that disability is being excluded.

I started writing this blog with me teeth chattering, with my chest quaking, with my breath shaking and tears rolling down my face.

I wrote the following at the start of my breakdown but kept it until the end. It’s unedited and it is straight from the broken heart of an exhausted 21 year old disabled queer woman who just wants to be included. Who just wants disability to be included without having to fight, and beg, and spend the rest of her life demanding change:

I am so tired of being an afterthought. I am so tired of being ignored. I am so tired of my community’s history being suppressed and hidden and unrecognized. I am tired of begging for recognition when we deserve so much more. 

I am so tired of begging for the scraps of inclusion. I am tired of begging for media attention because the media doesn’t care. I am so tired of trying to appeal to politicians because they ignore us because of an inaccessible democratic system.

And I am so tired of the sympathetic dismissive smiles and head nods from the people in power who will never understand what it is to be disabled. I am so tired of the public not caring about disability and not feeling the need to care. 

I. Am. So. Tired.

And I think about how I’m dedicating my whole life to disability issues and how daunting that feels sitting here at 21 sobbing my heart out after a media release. 

Just a media release. 

It’s so easy to pretend like it’s just a media release. 

I’d rather pretend it’s just a media release and not a symptom of society’s continued apathy towards disabled people. Of our continued oppression. 

I’d rather pretend this is a one-time issue and not an every day lived reality. But it is. And unlike what feels like the majority of the world, I don’t get the privilege of ignoring this reality.

It is so easy to accept things the way they are. It is so much harder to have to fight for change. And it’s still hard to fight for change when there’s really no alternative. 

It’s hard, it’s exhausting, it’s demanding, it’s all-consuming, and it is the only choice I have.

I am surrounded by brilliant disability advocates and activists fighting and working for change, and while I know the weight of the disabled world does not rest on my shoulders, I don’t feel like I’ll ever be able to walk away from this movement.

So please, stop making me have to fight. Stop making me have to beg. And stop saying nothing about us.

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.

Self Care or Survival

Growing up in the self-love, self-care era, I feel fortunate to have seen the rhetoric go from self-care as a reward to self-care as a necessity. The shift isn’t complete as of writing, so I’m going to try to walk the line of advocating for self care as survival and acknowledging the absolutely glaring privilege of spending all day at a nature wellness resort yesterday. For disabled people especially, I believe that self care is, at its core, essential to surviving as a disabled person. We are constantly asked to extend ourselves past our limits, to do more than our non-disabled peers despite our limitations! And yes, I say limitations – don’t come near me with the diverse abilities rhetoric. When we discuss reproductive labour, we explicitly ignore the labour disabled people have to put in to manage their conditions, treat their symptoms, and explain very basic concepts to their non-disabled peers (ie. why I have the right to exist as a disabled person). 

At a NEADS event I hosted recently, I asked Heather Walkus, Chair of the Council of Canadians with Disabilities (CCD), how to avoid burnout. Her answer? You can’t! Under systemic ableism, we are pushed to the point of burnout, repeatedly, throughout our lives. Avoiding burnout requires avoiding the systemic ableism found in every aspect of our lives. Will I use this narrative to dismiss my mom when she warns me I’m going to burn out soon? Absolutely! (Sorry mom.)

It’s also worth noting that self-care is inherently subjective – it is personal and vulnerable and an expression of our basic needs. For me, self-care is about connecting with my body through face masks, long showers, yoga, and hearty meals. It’s about connecting with my spirit through spending time in nature and with music. It’s about connecting with my mind by just listening to it and exploring where my thoughts and feelings are coming from. Does anything about checking in on yourself, determining your needs, and acting on this sound like a treat? A reward? A luxury? Sometimes the last thing I want to do is sit alone with my thoughts and dive into them!

When we see self-care as a luxury or a privilege, we’re aligning ourselves with the same systems that see us as inputs in productive systems instead of humans. We’re alienating ourselves from our own bodies and needs! And, we push a classist rhetoric that poorer people can’t engage in self-care, or don’t deserve it. Are you seeing the problem here?

But here’s where I do a sharp turn and some of you fall off: yesterday was a privilege and a luxury! It was a reward! Was it still self care? Absolutely! Was it essential? Absolutely not! 

For anyone with disposable wealth and/or economic privilege, I think we’re the ones that have to do the heavy lifting when it comes to shifting the self-care narrative: we can’t act like spa days are essential to our wellbeing. We can’t use self-care as an excuse to ignore our privilege. 

Yesterday was self care + : I listened to what my body needed (a break) and I gave it what it needed (a break) – there’s just easier and more accessible ways to treat that need than disappearing from reality for a whole day to drink sangria in hot tubs. 

The concept of self care + echoes the idea of reasonable accommodation – there’s different ways to accommodate your needs, and some are more practical and just as effective as that ideal solution you have your heart set on. (Reasonable accommodations can be quite controversial – please feel free to remind me to expand on this later on!)

I spent all of yesterday at Nordik Spa in Chelsea, Quebec as a consolation prize for my arthritis relapsing. It was less pity party and more reminding my body I will do very extreme things to it to make it behave, but a consolation prize nonetheless. Despite the ever-growing list of assignments and readings and deadlines and meetings, now felt like an exceptional time to go. I was constantly exhausted, lacking enthusiasm, and my mental health has been (clearly) not the greatest lately. Did this one-day getaway cure all of that? No! Would it be reasonable to expect it to? Also no!

Even at a spa, my anxiety can know no bounds. To be fair, this was my first ever solo trip – and when my 15 minute walk to the grocery store is enough to push me into hypervigilancy, this whole “relaxation” thing did not seem attainable. To be fair, I thought my anxieties were quite reasonable: the spa is in Quebec and I’m not fluent in french, uber doesn’t operate in Chelsea, and I was a considerable distance away from my support system! Speaking of them, my support system knows how to show up – my pal from Gatineau offered to come pick me up if I got stranded, and my boyfriend had a lovely balance of enthusiastically replying to my check-in texts and letting me have some space. Once I secured an uber to take me to Chelsea (pretty much a miracle) and arrived, my reasonable anxieties faded to slightly below my baseline level of anxiousness. 

A lot of people have a lot of questions about Nordick Spa, so the disability advocacy blog will briefly be giving travel blog energy – I promise, we will return to our regular programming shortly. After I checked in, I changed into a robe, took a shower, and headed outside into the -5º Canadian winter. No one really told me what to do, so I found my way to an unintimidating sauna. What could have been a PTSD jump scare across the sauna was actually a very nice regular, also on a solo trip, who gave me plenty of reccomendations and solicited life advice. Truly a solid start, and I began to feel more comfortable with the environment (by this I mean the people, not the snow lurking on the roofs.) 

After scoping out the entire resort (a practice I recommend to anyone! not just hypervigiliant 20 year-old solo travellers!) I started on thermotherapy: 15 minutes of heat followed by 10-15 seconds in cold water, followed by a rest period. It shocks your adrenaline and nervous systems – which is great because I’m all adrenaline and all nerves all of the time. Much like massage therapy, most people think thermotherapy is relaxing and relatively painless. Then again, most people ditch jumping into icy cold pools after staying the full recommended 15 minutes in a sauna getting disgustingly sweaty. I was shocked (get it) at how tired the quick hot-cold switch made me, and was introduced to the successor of the beloved heated blanket: warmed stone beds! There were also some scattered heat lamps, that made me feel a bit like a lizard or an egg. 

My favourite saunas were the Earth and Mediation saunas, my favourite place to cool off was what I lovingly called the seal tank (pictured below), and my favourite place to rest was above the Russian sauna on the heated beds. If you’re open to drinking on your self-care day, please drink sangria in a hot tub while watching the sun set over Gatineau Parc – unparalleled. I was also lucky enough to participate in the Aufguss ritual at the Finlandia sauna – which I 100% recommend. A performer comes in with essential-oil infused snowballs and glow-in-the-dark towels and dances along to a pretty decent soundtrack – and it ended up being the best performance I’ve ever seen. I also feel like we aren’t allowed to judge this one unless we’re able to dance and move towels around in a sauna without a) hitting everyone and everything and b) drowning in our own sweat. 

For food and drinks, I managed to get over the eating alone anxiety! I tested the anxiety levels with a croissant and iced tea from the Mëzz Cafe for a morning snack – when you’re eating alone in a bathrobe, I feel as though a trial run is warranted. At Restö, The PEI mussels were so good (after I panic-texted my partner to figure out how to eat them), and the wild boar ragout was enjoyably unique, if only a one time thing. The drinks were delicious, especially when in a hot tub, and got the job done. I got a little more drunk than I prefer, and my waitress at lunch was kind enough to slip me some extra bread. What can I say? Women supporting women.

Staff and the other guests seemed pretty accustomed to solo travellers, so there was only very minimal questioning looks directed my way. One couple I was talking to did ask why I was here alone, and I told them the truth: I’m in a very loving, supportive relationship, but I wanted to be alone to focus on myself and my own self care for the day. (Most people really like that answer – wait until I tell them I buy myself flowers too. )

On the PTSD front, I did pretty well! The wet sauna was so dark and full of water vapour that I couldn’t see right in front of me, and I luckily had the foresight to ask if anyone else was in the sauna so I didn’t accidentally hurt someone. SIX people responded – and they didn’t even know other people were in there! And I still sat in that room, in the dark, with people in undetermined locations, and for some reason I felt safe.

After a full 10 hours of nearly no screens (save the odd check-in for safety) and minimal brain distractions, I feel as though I sufficiently listened to my body, mind, and spirit – especially in the mediation sauna, some weird brain stuff happened in there. With the temperature dropping and the outdoors feeling more like the cold element of the thermotherapy cycle than the water, it was time to go home. For my Ottawa pals planning on going, Blue Line Taxi is used to getting passengers from Chelsea and got me home with no difficulty. When I got home, I was enjoyably exhausted and blissed out. I FaceTimed my mom to fill her in, ate peaches with my partner while giving an enthusiastic and probably incoherent recap of the day, and fell asleep relatively easily – which is saying something as of late.

But here’s the thing: the spa is inaccessible. Deeply, deeply inaccessible. Steps down to the pools, up to the front entrance, hidden behind doors I’m not supposed to go behind inaccessible. While I didn’t test it yesterday, my favourite way to gauge accessibility is to ask employees how they bring shipments in when there’s a visibly excessive amount of stairs. When it comes to shipments and baby strollers, the average non-disabled person seems to clue in pretty easily.  And I feel as though this spa’s inaccessibility is a proxy for how the wellness world seeks to promote health and wellness while alienating the people that need it most. Practically speaking, there’s no reasonable explanation to exclude disabled people so thoroughly – making up 20% of the world, we’re a stellar demographic to market to, especially when our needs are so closely aligned with the holistic/alternative wellness sector! A topic for another time, but alienating disabled people from alternative therapy forces us to remain in the medical model, and further harms multi-marginalized people who Western medicine has failed.

I’ll try not to edit this blog too much after writing. I don’t want to sound too “obliviously privileged travel vlogger with a poor grip on reality” (although my grip on reality is always relatively poor), but I also want to keep my writing as genuine as possible. I’m also trying to keep this whole blogging thing as stress-free as possible – no hustle culture allowed, only poor grammar and the occasional spelling error. 

carly fox standing in a cold pool outdoors in a bikini
in the seal tank after the Earth Sauna – probably in mini-shock