Carly Fox (she/her/elle) is a disability rights advocate with chronic and mental illnesses and neurodivergency. She uses her privilege to make spaces more accessible and inclusive of the disability community, and aims to challenge ableism in all the spaces she occupies.
Despite the continued roll-out of enforcement measures under the Accessible Canada Act, the enactment of accessibility standards through Accessibility Standards Canada, the continuation of the Disability Inclusion Action Plan, and the landmark passing of legislation allowing for further development of the Canadian Disability Benefit, disability is only mentioned four times in the 2023 Fall Economic Statement and seven times in the accompanying Annexes. Of these mentions, disability is only directly discussed twice: in relation to childcare and the need for barrier-free housing – with no accompanying commitments or specific funding.
In the main statement, disability is only specifically discussed once in a brief add-on to the discussion of child care agreements with the provinces and territories, identifying a commitment to develop and fund an inclusion plan to support children with disabilities. Of the other three mentions, one is in a list of marginalized groups benefitting from more affordable housing, one is in relation to Veterans’ benefits, and one is concerning potential additional funding for students with a disability – albeit, alongside any dependents they might have.
While disability is mentioned more frequently in the Annexes, there is again little specific consideration to the disability community’s unique needs, barriers, and disproportionate financial burdens. In Annex 1: Details of Economic and Fiscal Projections, disability is mentioned twice to clarify its inclusion in aggregate measures such as the Child Disability Benefit and “Pensions and other accounts.” While in Annex 4: Statement on Gender, Diversity, and Inclusion, disability is mentioned 5 additional times, with 4 of these mentions being lists of marginalized groups and/or intersecting identity factors. Two mentions worth noting are the brief consideration of persons with disabilities’ need for barrier-free housing, and the inclusion of Indigenous persons with disabilities amongst other intersecting identity factors experienced by Indigenous persons.
With projections lasting into 2028-2029 and funding being promised for 2025-2026, the future of critical measures such as the Canadian Disability Benefit are deeply uncertain.
At A Glance
Mention #1: Building More Affordable Housing
Disability is not specifically considered in this section, and is only briefly mentioned amongst a list of other marginalized groups benefitting from affordable housing investments. (22)
Mention #2: Supporting A Strong Middle Class
Disability is only mentioned in relation to Veterans’ Benefits being indexed to inflation to help Canadians keep up with the cost of living. (33)
Mention #3: Federal Investments to Support Canadians With the Cost of Living
In a number of hypothetical examples designed to show how federal benefits aim to make life more affordable for Canadians, disability is briefly mentioned in the case of a low-income student in Nova Scotia, where they could receive additional funding for specialized student grants and equipment if they have a disability. (34)
Mention #4: Delivering Affordable, High-Quality Early Learning and Child Care
The first explicit mention of disability is in only one brief sentence in the supplementary discussion around receiving affordable, high-quality early learning and child care: “Agreements with provinces and territories also include a commitment to develop and fund an inclusion plan to support children with disabilities.” (34)
Mention A1: The Child Disability Benefit is included as a footnote in Annex 1’s Table A1.6: The Expense Outlook to clarify its inclusion in the Canada Child Benefit. (82)
Mention A2: In Annex 1’s Table A1.7: The Budgetary Balance, Non-Budgetary Transactions, and Financial Source/Requirement, the discussion of the “Pensions and other accounts” line includes disability benefits alongside other benefits such as health care, dental plans, and veterans’ benefits. (87).
Mention A3: In the opening section of Annex 4’s Statement on Gender Diversity and Inclusion, disability is included alongside other groups disproportionately impacted by the higher cost of living. (107)
Mention A4: Under Annex 4’s subsection on Canada’s Housing Action Plan, disability is more meaningfully considered alongside seniors, those on fixed incomes, and women escaping intimate-partner violence. This discussion has the most in-depth discussion of disabled people’s unique needs: “Persons with disabilities also face unique challenges: according to the 2017 Canadian Survey on Disability, 15.9 per cent of persons with disabilities were living in households in core housing need.” (107)
Mention A5: Continued in Annex 4’s subsection on Canada’s Housing Action Plan, disability is listed amongst other intersecting factors experienced by Indigenous persons who will benefit from the Urban, Rural, and Northern Indigenous Housing Strategy. (109)
Mention A6: Again found in Annex 4’s subsection on Canada’s Housing Action Plan, persons with disabilities are included amongst groups benefitting from the Apprenticeship Service and the Union Training and Innovation Program’s promotion of inclusion and accessibility. (109)
Mention A7: The final mention of disability is in a list of low-income and vulnerable populations who would benefit from cracking down on junk fees. (110).
Breaking It Down
Chapter 1: Building more affordable housing
“Affordable and community housing play critical roles by providing the most vulnerable Canadians with a place to call home. People experiencing or at risk of homelessness, women and children fleeing violence, seniors, Black and racialized people, Indigenous people, and persons with disabilities, are among those who benefit the most from affordable housing investments. The federal government has been taking action to make investments that build and repair these types of homes.” (22)
The Affordable Housing Fund will repair/renew 129,000 homes and build 31,500 more. $1 Billion has been committed over three years starting in 2025-2026 to support non-profit, co-op, and public housing providers to build over 7,000 homes by 2028.
However, there is no mention about accessible housing – only making the programs themselves more accessible, “with faster approvals and other improvements to meet the needs of vulnerable populations.”
Chapter 2: Supporting a Strong Middle Class
Despite opening the section with language around strengthening social safety nets and building economies where everyone has a real and fair chance for success and listing a number of social security programs, there is no mention of the Canadian Disability Benefit.
The only mention of disability is in the brief discussion of Veteran’s benefits: “Veterans’ benefits, such as the Disability Pension and the Pain and Suffering Compensation, are also indexed to inflation.” (33)
Disability is mentioned in a hypothetical scenario designed to share available support programs: “A low-income student in Nova Scotia could receive more than $5,800 in additional support in 2023 thanks to increased Canada Student Grants and interest-free Canada Student Loans, the Grocery Rebate, and pollution price rebates. If they have a disability or dependants, they could receive an additional $12,800 in specialized student grants, plus an extra $640 per dependant, and up to $20,000 towards devices that support their learning.” (34)
Disability is again briefly mentioned in the discussion of affordable, high-quality early learning and child care: “Agreements with provinces and territories also include a commitment to develop and fund an inclusion plan to support children with disabilities.” (34)
Annex 1: Outlook for Expenses
Disability is briefly mentioned in a footnote to table A1.6: The Expense Outlook – covering projections in billions of dollars between 2022-2023 and 2028-2029.
In the following section, Major Transfers to Persons, the Canadian Disability Benefit is nowhere to be found among major transfers such as Employment Insurance (EI), the Canada Child Benefit, and Old Age Security. (82)
Disability is once again mentioned in the discussion of Table A1.7: The Budgetary Balance, Non-Budgetary Transactions, and Financial Source/Requirement. This discussion merely explains what financial sources are included in the forecast horizon: “Pensions and other accounts include a variety of employee future benefit plans, such as health care and dental plans, disability, and other benefits for veterans and others, as well as the activities of the Government of Canada’s employee pension plans, and those of federally appointed judges and Members of Parliament.” (87)
Annex 2: Statement on Gender, Diversity, and Inclusion
Near the end of the statement, disability is lumped in with other marginalized groups – and given no unique consideration throughout the statement: “We know that Canadians are continuing to face real challenges with the higher cost of living, including in accessing affordable housing. Vulnerable Canadians—including seniors, persons with disabilities, 2SLGBTQI+, Indigenous, Black, and racialized people—face these challenges in disproportionate, unique ways.” (107)
Disability is more meaningfully mentioned in the Annex’s discussion of Canada’s Housing Action Plan: “Investing in housing is crucial to meeting the needs of all Canadians—but housing challenges are even more pressing for some. This includes seniors, who represent 17 per cent of those in unaffordable housing, many of whom are on fixed incomes; women escaping intimate-partner violence; and persons with disabilities, who may require barrier-free homes… Persons with disabilities also face unique challenges: according to the 2017 Canadian Survey on Disability, 15.9 per cent of persons with disabilities were living in households in core housing need.” (107)
In a breakdown of measures related to the Plan, Indigenous persons with disabilities are mentioned – an appreciated consideration given the disproportionate rates of disability Indigenous people face: “Continuing to work towards the co-development and launch of the Urban, Rural, and Northern Indigenous Housing Strategywill directly benefit Indigenous people living in urban, rural, and northern communities, especially Indigenous persons with disabilities, women and girls, and 2SLGBTQI+ people who are at particular risk of violence when experiencing homelessness and housing insecurity.” (109)
In a following discussion of how housing investments support the construction sector, persons with disabilities are again briefly mentioned alongside other marginalized groups: “For example, federal investments such as the Apprenticeship Service and the Union Training and Innovation Program have promoted inclusion and accessibility for women, persons with disabilities, Black and racialized people, and Indigenous people.” (109)
In the discussion of supporting a strong middle class, disability is again briefly mentioned alongside other marginalized groups in relation to cracking down on junk fees: “Low-income and vulnerable populations, including Indigenous people, recent immigrants, persons with disabilities, and seniors, will disproportionately benefit, since higher fees may result in spending a greater portion of their income.” (110)
This blog has been a long time coming. It’s been exactly 50 days since I touched back down in Ottawa after wrapping up the 16th Conference of State Parties to the United Nations Convention on the Rights of Persons with Disabilities in New York City as an official member of Canada’s delegation.
You would think that after what could very well be the highlight of my disability advocacy career I’d be rushing to write some in-depth tell all blog while the memories were all still fresh – but to be completely honest, 50 days later I’m still unpacking the experience and grappling with what I learned.
I’ve learned that life has the very annoying habit of never slowing down, especially when you desperately need it to. There’s never going to be a perfect time to write the perfect blog! There will (hopefully!) always be new projects at work, new gigs being booked, critical moments in the movement happening.
I’m trying very hard to get better at balancing my life and really exploring disability unrelated aspects of my personality – in other words, I need to get a hobby before I am completely burnt out. All of this to say, the blog has been a little inactive, this blog is getting uploaded way too late, and I can’t bring myself to apologize.
One of the highlights of the conference was meeting New Zealand disability advisor Matt Frost, who reminded me I have the right to enjoy my youth. (More on him later!)
Before I get into the exciting day-by-day, play-by-play summary of the conference, let’s get the nerdy stuff out of the way.
The United Nations was founded in 1945 following the end of World War II to encourage international cooperation and the promotion of human rights and world peace. (This is a gross oversimplification, please just roll with it!)
The UN is headquartered in New York City, US – and this is where all the cool, regular meetings go down. This includes the General Assembly, where delegations (official representatives of State governments) meet and discuss critical issues, and the Security Council, where 5 permanent States and additional revolving countries debate ongoing security issues and occasionally approve actions to be carried out by UN member states (think peacekeeping forces, sanctions, statements).
The UN Headquarters is also where annual conferences on international human rights conventions (laws) happen. These conferences often occur on the anniversary of a convention entering into force after enough State Parties (countries agreeing to the convention) ratify it – meaning they agree to be respect, protect, promote, and fulfill the rights promised in the convention at international and national levels.
A Conference of State Parties (COSP) to most conventions kicks off with the Opening Session in the General Assembly Hall. (If you’ve seen a President, Prime Minister, King or Queen deliver remarks in front of some fancy green stone, odds are they were delivering an address in the General Assembly.)
At the opening session, the Secretary-General of the United Nations Antonio Guerreros will deliver his remarks, followed by UN-appointed experts working in the field related to the convention being discussed. For COSP CRPD 16, this included Chairperson of the CRPD Committee Rosemary Keyes, Special Rapporteur on the Rights of Persons with Disabilities Gerard Quinn, and Youth Representative Ghanim al-Muftah.
The opening session generally takes up the entire first day, and for the following 2 days the official proceedings are discussions of the conference’s subthemes. At COSP CRPD 16, the official theme was “Harmonizing National Policies and Strategies with the CRPD: Achievements and Challenges.” As a policy nerd, I thought it was a great theme, but in practice I didn’t feel significant pressure on states to further policy harmonization. The subthemes (sexual and reproductive health, digital accessibility, and under-represented groups) definitely had more influence this year, particularly for the side events.
Killer segueway! While the official proceedings are undeniably very important, the real fun happens at the side events occurring throughout the conference.
Side events are generally hosted by a State Party, with participation from NGOs, advocates, and subject matter experts from around the world. And by fun, I mean in-depth discussions on more specific topics, Q&A sessions with internationally renowed experts, and networking with other delegates and NGO members.
That’s the nerdy stuff! Hopefully you’re still here with me and have not left or fallen asleep.
Before we get into the blog-y part of the blog, I really want to note that my experiences were so heavily shaped by my privilege coming from a rich, bilingual, Western, G7 country.
While the UN has six official languages (English, French, Spanish, Arabic, Russian, and Chinese), almost all side events were conducted in English – meaning I was able to participate without any language barriers.
I was also a member of one of the largest government delegations at the Conference – meaning I had a strong network of colleagues supporting me. Many countries had very small delegations, and some were missing altogether. While funding is available for delegations from Least Developed Countries (a UN designation providing additional support and resources), lower and middle income countries are unable to send large delegations, which results in a lack of visible presence and influence at the conference.
Alright. Nerd stuff is out of the way. Disclaimers have been given. As promised, here is my experience at the 16th Conference of State Parties to the United Nations Convention on the Rights of Persons with Disabilities, as a member of Canada’s official delegation.
While the experience technically started on June 12th when I headed to the airport at 4:30am, we’re going to have to quickly flash back to April 11th, 2022 when my boss told me our organization would be able to nominate up to three youth as potential delegates for COSP CRPD 15.
I had literally never wanted anything so bad in my life and immediately started hyperventilating while preparing my application. As an international development and human rights student passionate about disability rights, COSP CRPD had become the ultimate long-term career goal, the perfect intersection of my academic background and lived experience.
On May 19th, after a very excruciating month-long wait where I played Letters to Cleo’s I Want You To Want Me non-stop, I received the email letting me know I was selected. In the same email, I was also told due to changing pandemic rules and capacity limits, the majority of the delegation would be online only. Womp womp.
But as someone who loves online school, work, and events, I wasn’t going to throw away the opportunity just because I wasn’t getting a free ride to New York. I made the absolute best of the opportunity – wearing very cute outfits even if no one saw them, calling in to zoom side events from my shared apartment, aggressively networking, and making pretty unserious social media content.
Overall, I had a great time! Yes, it was shocking to learn so few COSP CRPD delegation heads are disabled, and yes, I shut my laptop on a side event on meaningful participation without a single disabled panelist, and yes, I felt like an absolute pariah representing Canada as MAID expanded (which, valid) – I learned so much about international disability rights, and began really connecting to the international movement.
While the thought of being invited back the following year had crossed my mind, I never actually thought it would happen. So when I received another email from The Government out of nowhere on April 4th inviting me back to the delegation for an in-person COSP CRPD 16 I literally did not know what to do with myself. Except hyperventilate. Recurring theme.
A month later, I was also asked to speak at Canada’s official side event on economic security and employment opportunities alongside foreign government officials and Rebecca Cokley, the executive director of Obama’s National Council on Disability. More hyperventilating.
I am someone who loves to overprepare for everything. It is my love language, it is my safety blanket, and it is the extremely helpful manifestation of my anxiety disorder. But by this time, I was dealing with a family emergency and wouldn’t fly back home until the weekend before I headed out for New York. For the first time in my life, overpreparation was off the table. I brainstormed my speech on the plane back home and finalized it over the weekend before heading back to the airport on Monday morning.
And this finally brings us to the actual Conference. A twice-in-a-lifetime opportunity and what could very well be the highlight of my career. (Don’t worry, I refuse to peak at 21 and will not rest until I find a way to top this.)
While Monday was the official civil society component of COSP CRPD 16, for me it was a travel day. I’ve been travelling the country over the last year for work, so saying I have an airport routine is an understatement. (Yes, blog on this and on disabled travel tips is in the works! That and a million other things…)
I hopped in a cab at 4:30am, arrived at 5am, and cleared security within 30 minutes. One thing you should know about me is that I am dead set on being the most efficient person at airport security. I will literally practice taking my laptop and liquids out of my suitcase as fast as I can. Unfortunately, there is something about my laptop bag that makes x-rays angry or something, so I just make a game out of being the most unbothered pulled-over person ever because there is literally nothing to worry about. I then thoroughly enjoyed my routine of checking my gate actually exists and doing an elite Starbucks-Booster Juice breakfast combo.
I’d only ever travelled to America once before and basically flunked the interview portion, so I made sure to rehearse this time. Which felt extra important because being a government delegation member going to the United Nations felt pretty unbelievable to me, and I felt it would also be unbelievable to pretty much anyone else ever.
During the little interview section at customs, I was met with a semi-skeptical look, but once I emphasized I was a youth delegate I was let through pretty easily. (We’ll get more into it later, but I was an equal member of the delegation with full access to the UN HQ. Explaining I was a Youth Delegate was pretty much a get-out-of-jail/confusion-free card for the entire week though.)
While I managed to jump on an early flight as spaces were open, my fellow youth delegate Paula MacDonald (who is Deaf) didn’t hear the announcement and didn’t get my text message about it until it was too late. Luckily, she and her partner made it through customs in time, and it was so great to meet her for the first time in-person after being on the virtual delegation together the year prior! We parted ways so she could pre-board, and then we found out I was sitting right in front of them!
After we touched down at LaGuardia, we grabbed a cab to take us downtown. One thing I love about NYC is the accessible cabs – so naturally Paula, her partner, and I started playing around with the “accessibility mode” on the cab’s touch screen. We then got stuck on accessibility mode (which was pretty much just a voiceover). Hilarious way to start your time in New York for a disability conference.
I checked in around 3pm and did my beloved “hotel arrival” routine, which like my airport routine is highly polished thanks to my work travel for NEADS. My advice: security check, unpack, shower. Planes are so gross.
Around the time we touched down in New York, I received an email from a civil society colleague inviting me to an informal Canadian CSO (civil society organization) dinner. I can’t stress how much joy this brought me – while I’ve always been accepted in the community and no one has ever questioned my youth or qualifications, being invited to meet everyone in person at this dinner was very validating!
Everyone made an effort to include me, without being patronizing or infantilizing. I also learned so much about the behind-the-scenes work that goes into running a CSO, which has stuck with me as I begin to set long-term career goals.
Another thing you should know about me is I am in a near-constant state of hypervigilance, especially when outside. And it’s not for nothing, it’s literally the exception for me to be able to go outside and not be harassed or not be convinced I’m being followed. Somehow, New York City feels safer than Ottawa.
After the dinner wrapped up, I half-ran home not because I was being followed – but because it was raining. It was such a liberating moment, to be unafraid walking home after being accepted by your community on your way back to prepare for your first day at the United Nations at age 21.
Waking up for the first day of COSP CRPD 16 brought the same level of joy as waking up for Christmas when I was 6. I literally woke up and just started beaming.
And then I started developing my morning routine: every morning I would get dressed, speed walk to starbucks for breakfast and caffeine, do my makeup, grab a smoothie from the lobby, pack my things up for the day, and head out.
On the first day, we (the youth delegates) met up with two members of the delegation from ESDC before walking over together to Canada’s Permanent Mission to the United Nations. (I’ll keep their identities private, but I have to say the ESDC Government People were so patient in answering my millions of questions and entertained my mini-interviews about their career paths. Really great people that were really great to work with!)
Once we arrived at the Mission, we were guided to a meeting room for a pre-delegation meeting meeting with Minister Qualtrough, then-Minister of Workforce Development and Disability Inclusion. While I had done a few roundtables with Minister Qualtrough, spoken at her youth town hall, and attended her International Day of Persons with Disabilities event, I didn’t expect her to remember much about me. And then I learned I had gained a (favourable, I think!) reputation for “chomping at the bit” to get down to advocacy work and share my prepared points.
Once we were all settled in, Qualtrough got right to the point and asked us about the pressing issues our communities were facing – which I really appreciated. Then, we wrapped up our pre-meeting meeting and headed into a larger room for the full delegation meeting. In total, the delegation included Minister Qualtrough as delegation head, Canadian Ambassador to the United Nations Bob Rae as deputy delegation head, two ESDC officials, one GAC official, two BC government representatives, and one Manitoba government head. We were also supported by Mission Staff, who were like the ESDC reps kindly willing to entertain my infinite questions.
After going around the table and introducing ourselves, youth delegates were invited to ask the provincial representatives about their work. Knowing we were short on time and wanting to yield it to the other youth delegates, I said “I’ll just find you and grill you later.” Luckily, everyone laughed. And no, I did not actually grill anyone – we did have some lovely conversations though. Very non-grilly.
Once the meeting ended, we were given our official UN delegate passes and Canadian delegation pins – a semi-circle representing the Sustainable Development Goals (SDGs) with a maple leaf on top. New prized possession.
Then, we all headed over to the UN (where the Mission staff now entertained my questions, truly a group effort here) and entered through the official delegates’ entrance. It’s a fairly discreet, plain entrance not too different from the other entrances – but being able to go through it really cemented that I was an actual delegate at the United Nations. I’ve never been someone closely attached to reality, so little reminders like these really helped me grapple with the importance of this opportunity.
As one of the largest delegations, 6 of us headed off to Canada’s official table in the General Assembly, and the rest of us found seats off to the side. (Fun fact I learned later: delegate passes don’t work on the doors to the audience seating above the GA hall!) Soon after we took our seats, Secretary General Antonio Guerreros welcomed everyone to COSP CRPD 16 and gave his opening remarks. He then handed it over to the President of the General Assembly, the CRPD Committee Chair, the Special Rapporteur on the Rights of Persons with Disabilities, and the Youth Representative.
After opening remarks were delivered, the arguably coolest (and arguably nerdiest) part of the conference kicked off. Each country is given up to 5 minutes to share their progress realizing the CRPD, and after 3 countries an NGO or human rights institution are given 3 minutes to provide their comments.
Like last year, Minister Qualtrough was one of the very few delegation heads who openly identified as disabled. At a conference where Nothing About Us Without Us is said at nearly every side event, every country statement, every thematic debate – the impact of representing one of the few countries with meaningful disability representation finally hit me. I was slowly realizing just how much of a leader Canada is when it comes to disability rights. (Shocking, I know! More on this later!)
Once Qualtrough delivered her statement, I left the GA to get a feel for the building before the next side event began. Scoping out spaces helps me feel more secure in new places, and sometimes leads me to find very cool fun things – like life is just one big scavenger hunt. I stepped out to check out the Rose Garden, and then was convinced I was locked out of the building until I realized I just needed to tap my pass.
I headed up to the Delegates Lounge, and sat there for a minute to really show myself that I was a full, valid UN delegate that belonged there. As far as I know, Canada was the only country with actual youth delegates (meaning full delegates who are also youth) and I really wanted to fight off imposter syndrome and get high-ranking officials from around the world more comfortable with youth taking up space.
To everyone’s credit, I didn’t get a significant amount of funny looks – but I find most delegates are very good at minding their business, since they have so much. (I swear this is a hilarious joke. To probably a very niche crowd. Let me have this.)
After unashamedly exploring the UN and sufficiently geeking out, I headed down for my first side event hosted by the Zero Project, a non-profit based out of Austria. Every year, they put on a conference at the UN’s Vienna Office, where they discuss best practices and legal frameworks around disability rights.
It was an incredibly well-organized event, with their Model Policy Report printed out and examining model practices around CRPD and SDG implementation from around the world. You can’t imagine my shock when Canada’s Accessible Canada Act was the very first example of a national model policy.
At my very first side event, on the very first day of the conference, I was having an existential crisis.
I’d come into this space prepared to weather some backlash around Canadian disability policies because there is so much criticism domestically. But this space was the opposite of domestic, and I was so absorbed in my own privilege and in my own life that I failed to recognize the ACA as a significant milestone and best practice in the international context!
When I first entered the room, I was greeted by Robin Tim Weis, Director of International Affairs for the Zero Project. We started chatting, and I was confused by his positive perception of Canada. By the time I was leaving, I pulled him aside to thank him for organizing the event and let him know it completely changed how I see Canada in an international context.
This is also where I met the first of many Australians. There was literally a joke going around that the Australians took up two entire planes – and now I’m not even sure it was joke.
After learning about actually important stuff about Australia’s disability context from my new friend Alex who does great work at a human rights firm, I then learned he was interested in our wildlife. An Australian interested in OUR wildlife?? My perceptions of my own country were now being challenged on two fronts. I left Alex with the knowledge of what a fisher was, and his friend left me with a Kangaroo pin. Way to commit to the bit Australia.
I then headed over to a side event on accelerating inclusive sustainable development through promoting community care, and was pretty quickly let down as service providers, business models, and the care work sector were all prioritized over actual disabled people. Before I left early, as some panelists were clearly sick and it was a small room, I did pick up some helpful insights on using the SDGs as a mechanism to push for disability rights and inclusion.
With some extra time on my hands and no more side events scheduled for the day, I headed back to the now much more empty GA for the remainder of the opening session.
With the other Canadian delegates off on official meetings or at side events, a GAC representative was holding down the fort. GAC Rep (I will also hide her identity) was so, so cool to work with – she was Gen Z, had established a very impressive career for herself, and (guess where this is going) entertained my millions of questions.
Still existentially reeling from the Zero Project event, and miffed (there is no better word here) by the Care Agenda event, sitting at Canada’s GA table as an official delegate was the perfect setting to recalibrate and situate myself in an international context.
Once official proceedings ended at 6pm (love the UN’s punctuality), I headed back to the hotel to drop my stuff off before heading out for Canada’s informal gathering. In classic Carly Fox fashion, I ran into another delegate and had a great talk with them before heading out. A block later, I turn around and see said delegate walking my way. Obviously – we are going to the same place. I then turned around and very awkwardly made eye contact until they caught up.
We then walked over together, which was a great opportunity to grill “the entire BC government” as I called our two BC government reps. (I don’t even remember why I did this, but I think it’s still funny without context.) As you can probably guess, they were also very patient with me and entertained this joke and my questions.
We then arrived at the pub venue, and found out the NYC Trivia Team was actively trivia-ing. With a loud MC, loud music, and a crowded venue, we were really putting the informal in informal gathering. To really “youth” it up, I ordered a drink, downed it, talked to Qualtrough, almost lost my passport AND wallet, then left.
Let’s break that down.
Drinking is self-explanatory.
Once there was an opening, I was able to sit down and very informally tell Qualtrough that I really appreciate all the work she is doing, even if I don’t always come across that way. I also finally got to explain that I created the new verb “Qualtrough’d”, which is when you’re the only disabled liberal MP and are thus blamed for every single disability issue even if it’s out of your mandate, and even if literally every other MP should also care.
This was incredibly timely as she had to unexpectedly leave the conference to defend Bill C22 (the Canadian Disability Benefit Bill) in the House of Commons. Why C22 wasn’t scheduled to be discussed earlier in the season vs the week before the House rose for summer and the week of COSP CRPD16 is beyond me – but it does cruelly illustrate how useful my verb is.
About a week from time of writing, Qualtrough was shuffled off the disability portfolio during a massive cabinet shuffle. It was an incredibly unexpected (and personally upsetting) move, and I’m still waiting on the reasoning to come to light.
After this chat, I cashed out. After the waiter asked what the gathering was about and I explained, he admitted he was a Model UN nerd. I then admitted I was also a Model UN nerd. I then walked away without my wallet and passport, and he got it back to me. Some real Model UN comradery there.
Having drank on an empty stomach (some call it irresponsible, some call it basic economics), I ventured out into the New York night to hunt down some Sweetgreen. For my fellow Canadians, Sweetgreen is like if Freshii had actual flavour. After obtaining the Sweetgreen, I made it 10 blocks back to the hotel, holding my meal like a football and again half-running.
Yet another solid end to the day.
I woke up the second day with my body metaphorically screaming at me.
I’ve learned I can get away with anything for about 4-12 hours before the arthritis pain kicks in – like some sort of get out of jail free limbo. On mornings like this I generally do one big yell (to scare the pain away, obviously), make myself get out of bed (which worsens the pain), and then get on with my day (which shockingly does improve the pain!)
After completing the Morning Routine once again, I had an extra hour before heading over to the UN – which I spent making last-minute “softening” comments for my side event that day (nicer words and add ons since I found out just the day before Canada was pretty good at disability from an international lens) and running it almost obsessively.
As someone who launched their advocacy career during the pandemic, I’m still not entirely used to in-person speaking gigs. At my most recent in-person speaking gig prior to this, I got the dreaded shaky voice. But I am someone who gladly embraces delusion, so I chose to tell my brain the side event was just a casual chat with the pals. (Spoiler: it worked!)
After a brief delegation meeting in the UN HQ (and after learning someone on this earth actually shows up to things earlier to me, looking at you Manitoba Man), I headed over to Argentina’s event on financial autonomy but “found out” it was Spanish only (spoiler: there was english interpretation, my bad!)
After checking the list of side events, I headed over to an event on disability data collection organized by the Organization of American States and the World Federation of Deaf Persons. No offense to Argentina or financial autonomy, but this really worked out!
This event had fantastic disability representation and very useful takeaways around supporting Disabled Persons Organizations (DPOs) in disability data collection activities to bridge government gaps and advocate for policy change.
I then headed over to Norway’s event on democratic participation and inclusive elections, which I was very excited for! While I have absolutely no political inclinations myself, I’m very passionate about civic engagement and improving disability representation in high-level decision-making positions of power.
To make things even cooler, the World Bank’s International Disability Advisor was moderating the event! The European Disability Forum was a key speaker, sharing how they found 400,000 people with disabilities were unable to vote in recent elections – particularly people with intellectual and developmental disabilities. Emma Bishop of Down Syndrome International, who is a fantastic advocate I met earlier in the lobby, shared how civic engagement and democratic participation was an empowering experience for her, and Dewlyn Lobo of People First Canada shared how she was prevented from voting by an ableist elections officer. Pretty stark contrast – clearly, Canada has a lot more to do to become barrier free.
Conveniently already in the same room for Canada’s side event, I anxiously puttered around until it was time to set up.
Before I started drafting my script for the event, I checked out the other speakers to make sure I wouldn’t repeat what they would say – and that is how I learned about the absolute icon and legendary disability rights advocate Rebecca Cokley. Not only was she the Executive Director of Obama’s National Council on Disability, but she specialized in disabled post-secondary students’ mental health.
Hello, new best friend!!
Rebecca walked in and I immediately told her I thought she was the coolest, and I’d like to say we hit it off from there! She told me this incredible story about how she learned the sign for “booty call” (which I won’t repeat here, but it came from a wonderful display of cross-disability connection), and I knew we would get through this event just fine. I could go into the event, but I’ll just link the recording here for anyone who wants to check it out. Watch here: https://media.un.org/en/asset/k1u/k1us9b5vq4
Spoiler: I got through the event in one piece! I genuinely believe that if Rebecca hadn’t been there, I wouldn’t have felt empowered enough to confidently deliver my speech. Besides the importance of diverse representation, having more than one person from the disability community really provides a safer space for both/all disabled people to feel more comfortable and supported when sharing their lived experience.
After the event, I went home and took a nap. I generally take naps after all my events, and this was no exception. While it did feel a little strange having no one there to celebrate with, I played Taylor Swift as I dozed off and it was still a great experience.
After the power nap, I headed back to UN HQ for the last side event of the day, where my fellow youth delegate Paula MacDonald was presenting!
At this point, I knew I was physically in trouble. I have this unexplained difficulty with walking where it feels like my connective tissues are on fire and I experience severe pain, often having to stop for the pain to momentarily subside.
Deciding to go back to the hotel for a nap was truly one hell of a chronic pain trade off – more energy but more pain. Them’s the breaks.
This side event was probably one of the best of the whole conference, organized by the CRPD Committee, UN Women, Women Enabled International, OHCHR, and Global Affairs Canada – literally an all star cast. I’ll just include the summary I submitted to The Government as part of my delegate work because it’s worth going in-depth on.
Co-hosted by the Committee on the Rights of Persons with Disabilities and Women Enabled International, and co-sponsored by Global Affairs Canada, UN Women, and OHCHR among others – one of the biggest events of the conference organization-wise was ironically in the smallest conference room. Exploring the experiences of disabled women and gender diverse people in both the women’s and disability movements, this event explored the double discrimination these advocates and activists face and shared useful practices to meaningfully empower disabled women and gender diverse people.
An advocate from Transforming Communities for Inclusion based out of India powerfully shared her experience as a psychiatric survivor who navigated the colonial system of mental health common in commonwealth countries. She shared how patriarchy worsens the experiences of women and girls with psychosocial disabilities as we lack the systemic power necessary to challenge harmful mental health institutionalization practices. She then shares how the CRPD changed psychosocial disability groups’ organizing to connect to the wider disability community, and challenged the mental health model to instead advocate for community inclusion and deinstitutionalization. She walked audiences through the three relevant lenses: mental health is narrow and prevents meaningful change, the SDGs allow for social justice and opportunity, but only the CRPD can safeguard our rights as psychosocially disabled people.
Following the TCI representative, a queer and disabled woman from Kenya shared her experiences relating to gender-based violence in an East African context, where intimate partner and caregiver violence goes unpunished and femicide against disabled women is growing in prevalence. The inaccessible justice system there, paired with a political landscape currently considering implementing anti-queer legislation, means queer disabled women are unable to navigate the justice system. While Kenya has a protection bill against disabled people, it promotes sympathy and charity narratives that deny disabled people their agency and autonomy.
After the Kenyan advocate, Paula MacDonald, a Canadian Youth Delegate, impactfully shares her lived experience as a member of the Cree First Nation in Saskatchewan who was adopted and raised by a white, hearing family from a young age. In this isolating environment, she was denied both her Deaf and Indigenous identities until she was able to attend residential deaf school and reclaim her Indigenous identity in recent years. Paula advocated for improved and guaranteed funding for deaf education, for accessible ASL education instead of pushing implants and lip reading, and for improved coordination between federal, provincial, territorial, and municipal governments concerning accommodations on reserves. Paula powerfully shares that Deaf Indigenous people should not have to choose between their identities – pursuing ASL education often requires Indigenous people to leave their reserves, and those on reserves are often unable to access accommodations and celebrate deaf culture.
After this incredible event, I rallied and headed off to Microsoft’s NYC Headquarters for their Disability Data and Drinks reception, where they launched their disability data database project and invited disability organizations to partner with them.
Luckily, this was not my first event with an open bar so I had that aspect covered. (Quick tip: rotate water and wine!)
I was lucky enough to get an invite from the Zero Project, and I then sent that invite to literally everyone I knew who was in NYC for the conference. (Turns out it was an open invite! No wrongdoing here!) I had a great chat with Robin from the Zero Project and offered some points on improving their youth program, and learned more about their very cool conference in Geneva.
And then I grabbed Sweetgreen, and went home.
It was a good thing I only had one day left and the side event successfully behind me, because I swear I was literally eroding on the spot.
As I was on my Starbucks Speed Run, I ran into two of the interpreters who accompanied Paula, who were just running! (like on purpose!) Literally what can’t they do!
We had an extra hour before the delegation meeting, so you can imagine my surprise as I ran into half the delegation on their way to 8am side events. Cruel and unusual!
As Paula was flying home that day, the interpreters were also on their way out. I stopped and thanked them for all their hard work (and for translating the literal nonsense I say!), and they said the nicest, kindest things that gave me the push I needed to wrap up the conference the best I could.
After the delegation meeting, I very confidently walked into a building for a side event off-HQ campus, swiped my card, and didn’t get in. I saw security and showed them my pass, and I think they were going to manually just let me in when I realized I was in the wrong building! Like I said, I was eroding on the spot.
Luckily, I got it together and found the right venue in time to meet up with some other Canadians for an event on national autism strategies by the Autism Alliance of Canada!
This is when Matt Frost, the disability advisor from New Zealand, pulled me over and told me he really enjoyed my remarks at the event the day before, which was another much-needed boost at the end of a very exhausting conference.
Another boost was not needing to mask in this space – and once I stopped masking I realized just how emotionally exhausted I was from masking over the last few days.
I did not mask again for the rest of the trip.
This event featured a lot of lived experience, which is often sorely needed in autism-related events – both from self-advocates and from high-ranking government officials!
Afterwards, I did not have to move a muscle. Which is great, because I’m pretty sure they wouldn’t have cooperated anyways.
Once the event was over, two plane-fulls of Australians descended.
This is a joke, but there were a good number of Australians and we had a great chat about improving youth opportunities at COSP CRPD! I also took a bereal with some of them – so I guess you could say we were at least improving youth representation.
The Australian youth delegates were phenomenal, Kerri Joffe from ARCH Disability Law was incredible as always – but I had to walk out once someone started presenting on their adaptive sailing program where they never use the word disability because it’s a stigmatized word. I did not have the energy to not roll my eyes (aka mask).
I’ve learned that if you look like you know what you’re doing (and benefit from an immense amount of white privilege), you can usually get away with anything. (See the almost-UN building break in above).
And this belief was thoroughly reinforced when I walked into the intersectional gender rights event and was asked by an organizer if I was the UK government representative.
I tried to be comforting and say “I get that all the time”, which was probably subconsciously intended as a joke and was positively received.
I like to believe there’s a little section of my brain that is labelled “court jester” that functions when the rest of me is very tired.
While I was impressed by the fairly equal levels of gender representation at the conference, the next side event was almost entirely women. The gross failings of men to practice allyship and correct the systemic sexism they benefit from aside, it was a very nice, empowering atmosphere. Probably extra empowering for me as I could’ve pulled a Catch Me If You Can moment. (There is a clear correlation between the bad jokes in my blogs and the writing time I spend on them…)
I learned that the UK government has spent millions of pounds since the pandemic hit to support international DPOs working on gender-based violence, learned about how the Africa Disability Protocol surpasses the CRPD, and heard from a representative of the World Federation of the DeafBlind’s Croatian chapter with lived experience, which was the first instance of deafblind representation I’ve seen at any disability rights conference or event.
While my body thoroughly hated me at this point, I was more than happy to subject it to extreme physical pain as I made my way back to the mission for a meeting with Canadian Ambassador to the United Nations, Bob Rae.
A big, big thanks to the Mission staff for organizing this meeting last minute after I was unable to make the Canadian NGO-Ambassador meeting the day before.
I got there early and promised the delegation staff I wouldn’t cause any trouble, then immediately accidentally crashed a lady lawyers reception. I swear the Deputy Head of the UN mission is the nicest woman alive – she recognized me, came up, invited me to network, and encouraged me to get some food and drink without missing a beat.
To my credit, I generally had my shit together for the entire conference until this meeting- because when I saw him approach, I actually freaked out a little and had to ask if we stand when he enters the room.
And I’d like to think I still had it mostly together – I wrote my three main advocacy points on the back of one of the business cards I had custom made for the conference as memory prompts, and he swapped me cards halfway through the meeting which I will take as a good sign.
Now that I think about it, networking with business cards is too much like playing Pokémon when you were younger.
I usually treat people as people, and they usually seem to like it, but I had 20 minutes with the ambassador (and another youth delegate) and wanted to get right to business. Despite this, here are my people behaviour observations: Rae was fairly laid back while being to the point, chose tea over coffee, and wore piano socks. Cool guy.
After this event, guess what I did. You know it – I got Sweetgreen.
And then I headed back to HQ for the final side event of the conference on ratifying the CRPD’s Optional Protocol (OP).
You can (or can’t!) imagine my absolute joy when I saw Matt Frost there, and then when I then learned he’s actually speaking at the event!
Matt pulled up a seat next to me and we started chatting more about the autism event from earlier in the day when another panelist pulled up a seat on the other side of me. They also ended up speaking back to back, which drew attention to the 21-year old sitting in between them making very amused faces.
(I just found it hilarious that I was just chilling there. Like a capybara. You don’t know how it got there but you let it be.)
This was a perfect event to wrap the conference up with, as government representatives discussed how ratifying the OP provides helpful feedback from the CRPD committee on how to improve their ratification processes.
To sum up the OP, it’s a procedural convention that allows the CRPD committee to provide feedback and that sets up a mechanism for third party complaints. The complaints mechanism usually deters States from ratifying the OP, and only 104/186 CRPD parties have ratified it.
Matt spoke on how New Zealand has benefitted from the CRPD Committee’s feedback, and how they have a coalition of compensated DPOs who independently monitor CRPD implementation. This was a disability advocacy ammo goldmine.
And that was it! I went back to the hotel, ordered in dinner (not Sweetgreen this time!), and just generally collapsed. Arguably an anti-climatic ending, but pretty authentic to how I generally live my life.
The next day I packed up, took the subway to LaGuardia (side note: I am in love with the NYC subway and returning to Ottawa and its sham of a – I don’t even know what to call it – a light rail service is cruel), and flew home.
A lot of people have this weird misconception that once you land one great opportunity, more great opportunities find you – and this is the biggest lie I have ever heard.
This incredible, exhausting, eye-opening, existential, twice-in-a-lifetime-or-more-if-I-can-help-it opportunity is just the start of the next chapter.
There are new contacts to follow up on, new organizational connections to maintain, new ideas to develop, new everything and anything!
I tried to write this blog returning from a hometown right after the conference, or at least start the outline.
A lot of the time, I just write my blogs without an outline (completely unhinged you could say) – so what started as intent for an outline has turned into the blog’s unanticipated ending:
I am sitting here trying to write the outline of this blog on a bumpy train on my way back from an extended work trip listening to Fleetwood Mac’s The Chain on repeat and I feel my resolve and my fight and my energy and everything I need to do this work come back to me.
I’ve been so committed to being transparent about my work, wanting to show it’s not all glamourous and paid travelling (though there is a shockingly large amount of that) – it’s exhausting and painful and grueling.
But I think I’ve forgotten how important and cool and challenging (in a good way) this work is. Maybe I’m burnt out, and maybe my health is deteriorating, and maybe it’s hard to wrap up all these conflicting emotions and experiences in a blog – but this has been the best experience of my life and I know I’m not going to rest until I’m back there.
I’m having a moment. More likely a meltdown. All because of a media release on access to sexual and reproductive health.
Before we get into why I am an absolute wreck right now, let me make three things clear:
One – I am a firm believer in access to sexual and reproductive health. To abortion, whatever the reason for it. To quality sexual and reproductive health information. I am proudly pro-choice.
Two – I will always support other marginalized communities in their advocacy work for better access, opportunities, and outcomes.
Oppression is not like pie – there’s more than enough to go around. Public opinion and support and funding are all also not like pie – we as marginalized communities do not have to fight each other for our slice – we can just bake a bigger pie.
And when one marginalized community benefits, we all benefit. Our struggles are intertwined, our people are diverse and deserve to feel fully welcomed in their communities.
And three – I don’t believe critiquing “good” things makes them any less good. In fact, I believe we need to critique these good, progressive measures to ensure things keep getting better for everyone.
If we don’t critique things, if we settle for things the way they are – things won’t get better, they’ll just stay the same. And I’m here to tell you that I can’t survive more of the same. So many disabled people will die if we keep having more of the same. And the same is the continued marginalization and exclusion of disabled people.
From progress. From funding. From opportunities. From decision-making positions. From meaningful inclusion in policy making and program design. From education. From employment. From society.
Now that that’s all been said, let’s unpack why I am mid-meltdown.
As someone with a uterus (we are not doing transgender, non-binary, and genderqueer erasure here!), I have a bit of a stake in sexual and reproductive health.
Actually, everyone does. You’ve all been born, right? (Not that I should have to argue the whole “everyone should care about this” angle but that is where we are right now.)
And as someone who is disabled and has a uterus, I’m pretty passionate about accessible and disability inclusive sexual and reproductive health.
So you might be able to imagine how I felt after reading a media release announcing significant increased funding for sexual and reproductive health for marginalized groups that didn’t mention disability once.
Now, I won’t list the marginalized groups that were listed because that perpetuates an us vs them rhetoric. It’s not marginalized group vs marginalized group, it’s all of us vs systemic oppression.
What I will list are a few words frequently mentioned throughout:
“previous experiences of discrimination with the health care system”
“accessibility of information and services for underserved populations”
“the right to make decisions about their own bodies”
“increased risk for poorer sexual and reproductive health outcomes.”
It’s hard to describe what this feels like to someone who isn’t disabled, but to grossly oversimplify it: it’s almost like being picked last for dodgeball, but you aren’t even picked at all. And no one seems to notice. Or at least, they don’t speak up.
(And this metaphor is unfortunately not so metaphorical – plenty of disabled people aren’t allowed to participate in gym class. Or they’re not invited out. Or they aren’t even allowed to leave their homes.)
So, here I am, not playing dodgeball.
Less metaphorically, here the disability community is, once again, not being included in funding and programming designed to make programs more inclusive and accessible for marginalized groups.
And this one media release, while devastating for its disability exclusion alone, was a boiling point for me.
Already in this awful little exclusionary pot was the fact that disability was almost excluded from the anti-discrimination clause of the Canadian Charter of Rights and Freedoms.
That the UN Convention on the Rights of Persons with Disabilities passing 61 years after the UN was founded.
That Canada’s first federal accessibility legislation passing less than 4 years ago.
That most provinces and territories don’t even having accessibility legislation.
That countless equity, diversity, and inclusion foundations, programming, and policy actively exclude disability.
That actual human rights programs and offices and lawyers don’t adequately include and incorporate disability.
Since we’re rolling with this boiling point pot of water metaphor, let’s talk about that obnoxious steam that fogs up your glasses and hurts your hand while you’re stirring – the accessibility washing.
Accessibility has finally seemed to enter mainstream discussions. And before you get all excited thinking this means great things for disability inclusion, I’ll have to stop you right there. Because accessibility is being used to mean affordability, or better outreach, or better responsiveness.
Is that by definition correct? Technically!
Is it at the very least a little messed up to hijack a word commonly associated with the disability community to exclude them from measures they could benefit from? Absolutely!
And this awful phenomenon is cruelly complimented by organizations, academics, and governments using accessibility to gloss over disabled people entirely!
Instead of discussing harassment, discrimination, ableism, and stigma, it’s easier and more comfortable to discuss barriers in the built environment, communications, and technology!
But barriers are created, maintained, and perpetuated because the world does not think about disability! So us disabled people are stuck in this gaslight-y purgatory where everything is about us, but nothing is for us.
Yes, accessibility benefits everyone. But by emphasizing this universal benefit over addressing the very real discrimination and barriers disabled people face, accessibility risks coming at the cost of further marginalizing disabled people.
We are moving in the wrong direction, unrooted and unguided due to our conscious choice to ignore disability.
And just like sexual and reproductive health services, I’m glad progress is being made – but I sure as hell have every right to criticize the fact that disability is being excluded.
I started writing this blog with me teeth chattering, with my chest quaking, with my breath shaking and tears rolling down my face.
I wrote the following at the start of my breakdown but kept it until the end. It’s unedited and it is straight from the broken heart of an exhausted 21 year old disabled queer woman who just wants to be included. Who just wants disability to be included without having to fight, and beg, and spend the rest of her life demanding change:
I am so tired of being an afterthought. I am so tired of being ignored. I am so tired of my community’s history being suppressed and hidden and unrecognized. I am tired of begging for recognition when we deserve so much more.
I am so tired of begging for the scraps of inclusion. I am tired of begging for media attention because the media doesn’t care. I am so tired of trying to appeal to politicians because they ignore us because of an inaccessible democratic system.
And I am so tired of the sympathetic dismissive smiles and head nods from the people in power who will never understand what it is to be disabled. I am so tired of the public not caring about disability and not feeling the need to care.
I. Am. So. Tired.
And I think about how I’m dedicating my whole life to disability issues and how daunting that feels sitting here at 21 sobbing my heart out after a media release.
Just a media release.
It’s so easy to pretend like it’s just a media release.
I’d rather pretend it’s just a media release and not a symptom of society’s continued apathy towards disabled people. Of our continued oppression.
I’d rather pretend this is a one-time issue and not an every day lived reality. But it is. And unlike what feels like the majority of the world, I don’t get the privilege of ignoring this reality.
It is so easy to accept things the way they are. It is so much harder to have to fight for change. And it’s still hard to fight for change when there’s really no alternative.
It’s hard, it’s exhausting, it’s demanding, it’s all-consuming, and it is the only choice I have.
I am surrounded by brilliant disability advocates and activists fighting and working for change, and while I know the weight of the disabled world does not rest on my shoulders, I don’t feel like I’ll ever be able to walk away from this movement.
So please, stop making me have to fight. Stop making me have to beg. And stop saying nothing about us.
I’ve been wanting to write this one for such a long time as it’s been such a present symptom for so many of my disabilities throughout my life, but a recent rise in negative body image stemming from daylight savings time (it’s a thing, I promise!) really pushed me to write it now.
While body image issues can feel especially vulnerable to talk about, I’ve learned that it’s such a common shared experience for so many people – we’ve just convinced ourselves we’re alone.
So, here’s me sharing way too much about my personal life to show anyone out there struggling that they aren’t alone.
As always, some disclaimers.
I won’t share what foods I ate, what drinks I drank, how much I weighed, etc. If you also share your experiences with eating disorders/disordered eating/body image, I’d like to ask you to do the same – let’s not share dangerous information that can encourage others to repeat what we went through.
I also want to stress that weight is not as central to eating disorders/disordered eating as most people think. Too many of us have heard we aren’t skinny enough to get treatment for eating disorders, or that we’re too fat to have one at all – but eating disorders are a type of mental illness, not some adjective to describe the physical state of our bodies.
And above all, I’ve tried my best to ensure this blog doesn’t feed into a fatphobic narrative. Eating disorders often prey on the fatphobia pushed on us by our diet culture-obsessed society, and are characterized by obsessive and irrational thoughts that portray gaining weight as the worst thing that can happen. Again, irrational.
It’s also important to remember that fat people can also have eating disorders, and have very different experiences with treatment, rehabilitation, and society because of how they look.
Like always, I’m speaking from lived experience. Like all mental illnesses, eating disorders can be incredibly personal.
If your experience was wildly different than mine and you want to share it, please go for it! If my experience resonated with yours, please go for it too!
I’m learning that by being able to identify past emotions and discuss past experiences, I’m better able to heal – and I hope this blog can provide you with a space to heal as well.
Alright, let’s get into some extremely personal stuff!!
I grew up around diet culture as most people – especially women and girls – do. I also grew up in the time of weight watchers, calorie counting in health class, and the start of social media – which was pretty much a disaster waiting to happen.
Like most people, I have one memory that sticks out as the start of my self-awareness of my body and what society expected it to look like.
During my first ever musical at age 12, someone said my dress gave me a “muffin top” – whatever the hell that was. I
t’s worth noting I had a very ridiculous hat on and was dressed up like a flower, so looking back this 14 year old girl was definitely going through something if that’s what she noticed.
A year later, I turned 13 and discovered Tumblr. (You know exactly where this is going!)
While I occasionally scrolled through some concerning eating disorder hashtags out of curiosity, I never grew obsessed with those images – I knew they were unhealthy, I knew the posters were mentally unwell, I knew I didn’t want to be like that.
What did the most damage was the photos on mainstream accounts and hashtags that featured exclusively skinny women – at least on the eating disorder hashtags, I was able to identify dangerous messaging.
With mainstream social media use, diet culture is pushed onto us in much more subtle ways – and while Tumblr is dead to me, Instagram and Pinterest seem to have a field day setting up the algorithm as if to get me to relapse.
Like a lot of 13 year olds, I was dealing with severe depression and anxiety at this time.
I would stay home from school and doom scroll on Tumblr way before we even knew what doom scrolling was. And, like a lot of 13 year olds with mental illness, I had self-harming tendencies, and at this time it manifested in disordered eating.
This was all magnified by my environment: I had left my last elementary school to pursue the now defunct extended french immersion program in grade 7 (RIP), where I swear the school board’s most mentally ill students accumulated. Everyone was severely mentally ill, and having an eating disorder genuinely made me feel like I belonged.
I’m all for quality french education and bilingualism, but all things considered maybe the program’s cancellation wasn’t entirely negative…
When I was 14, I returned to my previous elementary school for grade 8 which sparked my first go at recovery.
I was back with my support system, my friends, my favourite teachers, my beloved music program. Here, I didn’t need an eating disorder to belong. I just did.
I began to understand which foods were “eating disorder foods” (foods encouraging pro-eating disorder thoughts) and avoided them like the plague, and tried harder to start the day with a solid breakfast.
7 years later, I’ve reincorporated some of the foods back into my life as part of recovery (no bad foods, just bad thoughts) and a balanced lifestyle, and breakfast remains my favourite meal of the day.
I also began to find recovery channels on Tumblr and mental health awareness accounts on Instagram – which were only just popping up at the time.
And then I started high school!
Maybe it was the ADHD kicking in (we’re getting there), but I never felt insecure or out of place. I was excited for a new experience with new people, and always assumed everyone else was just figuring life out as they go (news flash: we all still are!)
Grade 9 passed in the ways grade 9 does, and then Grade 10 hit. (If you’ve been following the blog, you know this is an “oh shit” moment).
While the trauma that kickstarted my PTSD happened around this time, we’ll revisit the PTSD-body image relationship at age 17 when I realized what had happened – right now, let’s focus on ADHD.
Disordered eating is very common in people with ADHD – whether it’s because you’re hyperactive and forgot to eat because you were busy doing something else (hi!) or because your executive dysfunction keeps you from getting something to eat.
While it can be an incredibly harmful symptom, it’s not often discussed in ADHD discussions – which absolutely sucks, especially for women and girls with ADHD who are disproportionately impacted by this and who face additional barriers to diagnosis.
For me, at 15, this ADHD-disordered eating relationship was a byproduct of an overpacked schedule with no time for breakfast or lunch – and finding the time to eat is still something I struggle with to this day!
Alright that’s the ADHD, cue the arthritis!
About a year later, I was diagnosed with juvenile idiopathic arthritis and a few months later I started methotrexate – which for autoimmune disorder treatment is pretty much just micro-dosing chemotherapy.
But interestingly enough, losing weight from the chemo never triggered those old thoughts – I had no control over my weight, and had absolutely no interest in glorifying the body that was actively trying to kill me.
It’s a weird, weird relationship, but even weirder was how many unsolicited and unwelcome compliments I got on my body from strangers – while I was on chemotherapy! While my body was actively trying to kill me!
Cue societal alarm bells!
And then, another year later, I realized I had PTSD. (It was a busy few years, I know!)
Like a lot of people with PTSD, I didn’t remember what had happened to me for a few years, and when I did I was able to understand all of its terrible symptoms.
Most (ir)relevant to body image is the depersonalization I face(d) – if you’ve ever seen a dog bark at itself in the mirror, know I’m the dog.
I just did not recognize my body, my face, my eyes, anything. Add in the chemo changes and you pretty much have a ghost!
PTSD recovery was and is tough, but that’s for another day.
I have to skip the year I moved out for university during the COVID-19 pandemic to protect an identity who really threatened my recovery – wishing that person growth and recovery, wherever they are.
A year later, the situation resolved itself and I was 20.
The PTSD was subsiding in severity, but the ADHD continued to keep me going like a hamster on a wheel that doesn’t know when to stop.
I didn’t binge anymore, but I did often forget to eat meals because I was caught up in other tasks. When this happened, I felt guilty, like I was letting my 13 year old self who fought so hard for recovery down.
But I was compassionate to myself, ate what I wanted in the moment when I remembered to eat, and started every day with a clean slate. Because that’s really the best we can do sometimes.
As I entered my 20s, the clean girl aesthetic caught on.
As someone who finds peace in having her shit together, I was an ideal target audience.
The only issue was the underlying disordered eating being promoted – only eating healthy homemade meals and working out all the time isn’t as healthy as the clean girl aesthetic makes out.
Luckily, the anti-diet culture wave hit social media soon after, and I found registered dietician Dr Abbey Sharp, who has single handedly helped me pivot my relationship to food.
Dr Sharp shows the start of videos subtly promoting disordered eating, and identifies the issues while providing better alternatives that create a kinder and more sustainable relationship with food. She also manages to do all this without villainizing the original creators or any foods, which is so rare and appreciated.
I’m solidly in my 20s now at 21, and am learning how to navigate and accept the changes my age brings to my body. People often say you can’t chase the body you had in high school, and I have no desire to – again, I was microdosing chemo.
But regardless, it is difficult accepting that my body will change when for so long that was an overwhelming fear of mine.
So far, I’ve been finding what feels good for me – a balanced, albeit super chaotic lifestyle with time carved out for yoga and homemade meals. This will change as I grow older, as will my body.
And whenever this growth scares me or triggers old thoughts, I think back to the 16 year-old on chemo who felt like a zombie. And I know she would be so proud to see me now.
This is the part where I say something ridiculously profound that stops every eating disorder in its tracks and cures everyone of everything ever. Kidding, of course.
What I can say is that recovery is personal – we all have different reasons to fight for it, different people we want to show up for, and different things we want to do with our lives.
Find what makes your life worth living fully – because there is always something for everyone – and go from there. Find what feels good for you.
And know that we are operating under an incredibly dangerous social narrative that prioritizes looks over wellbeing – every day we choose to love ourselves and commit to caring for us and others, we’re working to make the world a safer, better place for the next generation.
Alright! Another blog down, another excessive amount of personal information shared, another awkward but supportive conversation on the horizon! See you next time.
I can’t bring myself to apologize for the hiatus – it was much needed, and I know if I went to put up some banner on the website I would just remodel the whole thing again.
(By the way, how are you all liking the new streamlined site? I didn’t mean to do it but as I often say when my brain and body do whatever they want, “I’m not controlling this thing”)
I don’t know how much I can call the hiatus a break – I’m pretty sure I almost died in November between the tour, International Day (more like week) of Persons with Disabilities, and exams, but December was spent actually resting surrounded by loved ones.
More on this later.
Life feels as crazy as I am – and 2022 was no exception. Don’t go using this against me, but my birthday is January 1st – and I genuinely thought I was turning 30.
It wasn’t until my dad told me he was turning 61 (not 70) that I clued in on my extra 9 years left.
It’s not that this year was challenging or unbearable – it was just so jam packed with so many cool fun things it could have genuinely filled up 9 years.
So, I feel like the last year deserves a lil recap blog. I’ll share some of my favourite moments, reflect on some important lessons, and let you know what’s on for 2023!
But before we get into the year behind us, I want to talk a bit about where we are now, and where we’re going.
I gotta be honest, I’m kind of exhausted. I’ve been working myself way too hard for way too long, and I know if I keep going like this I will probably end up living in a cave. Again, I thought I was turning 30 at 21. I’ve got some work to do here.
When I started this blog, it reminded me just how much I love creative writing. Then reality kicked in and I turned it into yet another job. In my ongoing effort to not burnout and/or die, we’re taking the blog back to the creative outlet and enjoyable hobby it was meant to be.
Am I still offering trainings and consultations? Absolutely.
Am I going to just write from the heart for a bit? You bet.
But it’s so hard, balancing what is easy and what is needed.
What you don’t see behind the scenes are the disabled youth in my DMs asking for advice to break into the advocacy sector, or the parents of disabled children telling me how my blog helped them unravel their ableism, or the conversations between two strangers as they bond over lived experiences similar to those shared in my blogs.
And when I’m in a position where these things are possible, where this impact is possible, sometimes I feel so selfish taking a break.
But, the world continues to move on without me, and countless incredible disability advocates continue to do such important work. Acting like the global disability rights movement rests solely on my shoulders isn’t just completely ignorant and egotistical, it’s dangerous for my mental health and wellbeing.
There’s a lot going on on the horizon – I’m continuing to break into disability circles in the public service, I’m continuing my international work with the Council of Canadians with Disabilities, and I’m still going strong in my work at NEADS. I continue to wake up every day and do what I love for my jobs.
As of now, I don’t have any major announcements. And sometimes, I’m afraid I’ve peaked too early. I’m afraid that if I don’t book some major international conference every year, I will become obsolete.
These are all very big and mostly irrational thoughts and feelings I’ll continue to work through, and I hope you’ll join me on that journey.
(This is the part where I say “keep an eye out for this blog”, but who knows if that blog will actually happen? Gotta keep ’em guessing!)
What I do want to focus on this year is community and connection.
Disability advocacy cannot happen in isolation – I serve my community, learn from my community, live in my community, and love my community.
My disability reading list keeps growing, as does my networks. I’m learning about new concepts, new organizations, new movements that are propelling the global disability rights movement forward, and I’m energized by the direction we’re collectively heading in.
Before breaking into the recap, I need you all to know I literally had to research for this blog. Emails, IG stories, Facebook posts, LinkedIn updates, the list goes on. Memory issues aside, it’s been a long damn year! So, let’s get into it.
In the context of disability advocacy, January was the calm before the storm.
In the context of my real life, I lived through a white supremacist, conspiracy theory, alt right occupation of my city for weeks. Businesses shut down, I didn’t go to school in-person because they kept circling campus, and I refused to go outside.
What happened in January was not a one-time thing – we’re still learning more about what really happened behind the scenes, and my fellow citizens remain traumatized. This is definitely killing the blog’s vibe right now, but the truth needs to be shared.
News coverage of the occupation – especially in its first weeks, was incredibly biased towards the occupiers, and democratically elected members of our government supported their violent, criminal actions.
I’ll stop there for now, but please remind yourselves that political violence is alive and well in Canada. Fight hate wherever you see it, check in on your neighbours, and hold people accountable.
February was so incredibly busy on the disability advocacy front! (Editing Carly here: what a harsh vibe shift!)
I was invited back to uOttawa’s International Development Week to participate on their panel on the intersections of systemic inequality, and you can read my accompanying blog on it here.
I do not know who thought a 24-straight-hour conference was a good idea for anyone, let alone disabled youth, but I only dozed off for about 3 hours!
At GDYS, I learned about climate change in the Pacific region, institutionalization across Asia, humanitarian disaster response in the Middle East/North Africa, and mental health in Europe.
This was my first ever international conference, and I was absolutely hooked. Learning from my peers around the world and networking with them was so empowering, and I’m still in contact with so many delegates today!
I also participated in an Accessibility Standards Canada Youth Roundtable for NEADS, where government representatives really took the time to listen to our concerns and took my arguably over-enthusiastic criticism all too well.
This was the beginning of my arc towards seeing advocacy and disability allyship as a two-way street.
March was also incredibly busy.
(At this rate, I’m afraid I’m going to open all the month summaries like this.)
In March, I launched this blog, and things took OFF! 21 (now 22) blogs, 2157 visitors, and 3781 views later, I want to thank everyone for supporting me on this journey.
What began as a creative outlet quickly spiralled into a whole business, and will hopefully become a creative outlet again.
In the same month, I began to notice how my relationship with my peers was shifting because of my advocacy work (you can read my latest blog on that here).
This really hit me as when I arrived at an inaccessible student centre gala, up a flight of steep stairs, I was greeted with an apology.
Was I going to most likely rip into these people later into the night? No! But I was going to be so incredibly disappointed in them.
To date, they have not hosted another inaccessible event, and I know they were genuinely apologetic. Prevention is preferrable, but I’ll take sustainable change any day.
At NEADS, I hosted our third Virtual Access for All panel with disabled student leaders across Canada – this was such a refreshing and energizing experience that reminded me of how strong the disabled student movement is, and how important platforms to network and discuss our shared experiences are. You can watch the entire event here.
April was, yet again, busy. At this point, I have no choice but to open all the summaries like this.
I kicked off the month with an Instagram Live on self-advocacy, hosted by the Canadian Arthritic Patient Alliance and Take A Pain Check Podcast, and joined by fellow guest Anna Samson.
Another event this month was a virtual accessibility webinar for NEADS, where I discussed accessible social media practices alongside some colleagues discussing websites and programming. You can check it out here!
I started publishing on The Mighty, a site I first found at 12 when I was struggling with mental health issues, and returned to at 16 when I was diagnosed with my first chronic illness. To come first circle and maybe even write a blog a 12-year-old finds some comfort in was such a profoundly impactful moment for me.
Speaking of profoundly impactful moments, this was the month I was appointed International Chair for the Council of Canadians with Disabilities!
To work alongside the very people that fought to have disability included in the Charter continues to blow my mind, and I am so unbelievably grateful for the opportunity to learn from them and to start paying it back.
CCD is always looking for fellow youth, so don’t be afraid to shoot me an email!
May was, you guessed it, busy! And while there weren’t events this month, there were some major milestones!
In my work at CCD, I joined Global Affairs Canada’s disability in development working group alongside some incredible experts in the field.
I always look forward to these meetings, and am so grateful for them welcoming me in. In this working group, I really feel as though my youth has been celebrated and treated as the necessary perspective it is!
It’s also allowed me to put my (ongoing) degree in international development to use, and it’s inspired me to specialize in disability in(clusive) development – shockingly, this sector is largely neglected, so it feels like there is a lot of work to do!
Job stability is great and all, but I really wish in this field it wasn’t…
I started my very first co-op in the public service and absolutely adored it.
I began seeing the federal government as an essential partner in disability rights, and it began to shape how I approach advocacy work at national and international levels.
I quite literally can’t type this out without welling up a little, but being selected as a Youth Delegate was so profoundly meaningful to me in so many ways.
I was and am so thankful to NEADS for nominating me and for giving me the confidence I needed to launch my advocacy career, to CCD for supporting me in my international work and reminding me of how the disability rights movement got to where we are today, and to everyone who has supported the blog and my advocacy work.
And I was so incredibly lucky to be selected alongside Zoe Elverum and Paula MacDonald, who have taught me so much and are so unbelievably talented and knowledgeable and resilient.
I also had COVID-19 this month. Not fun.
In June, I went on AMI’s Now with Dave Brown to discuss the upcoming UN conference, and then I was there (virtually… but COVID-19 safety is COVID-19 safety, and health measures are disability justice.)
While the actual conference proceedings are important and impactful in their UN-y way, the real action happens in the side events.
I attended Canada’s youth participation panel featuring the absolute powerhouse Paula MacDonald, Inclusion International’s event on their Listen, Include, Respect guidelines for including intellectual disabilities in disability advocacy, Light for the World’s “Youth Changing the World of Work” event, a panel on meaningful disability participation without a single disabled person, an excellent UNFPA panel on bodily autonomy, and a moving event by Korean Association of the Deaf on the importance of sign language recognition.
In all honesty, this experience was bittersweet.
I had this incredible opportunity, but have to admit I was disappointed that my originally in-person attendance was cancelled.
I was so excited to represent my country, but I also carried the weight of our country’s significant failures – we remain a pariah on the international stage, and that is not something I can take pride in.
I was thrilled that the theme was meaningful participation and inclusion in society – but had to refrain from, respectfully, losing my shit when entire state delegations, panels, and events lacked disability representation.
All in all, I left resolved.
Resolved that I was going to spend the rest of my life ensuring Canada is no longer an international disability rights pariah.
Resolved that the Convention on the Rights of Persons with Disabilities would become fully ratified within my lifetime.
And resolved that I would contribute to this meaningful disability inclusion and participation, mainstreaming it into international relations and international development.
July saw me finally slow down (as if it could follow June!)
I fled my city in fear of another occupation on Canada day, and thus had a spontaneous and restful home visit.
When I got back, I solo hiked in Gatineau Parc (you can read all about it, and the wild turkey encounter, here), saw General Idea’s moving exhibit on HIV/AIDS at the National Gallery, and hosted Disability 101 at my school’s Women’s Resource Centre to celebrate Disability Pride Month.
I was working full-time on top of this, but I think I was realizing it was time to slow down.
August was both a time of wrapping up and starting fresh – which naturally my ADHD brain hated.
I quit my student association after a really disgusting show of ableism, and realized that what I had seen as support for my disability advocacy was merely appeasement or avoidance. That’s stayed with me.
I went home (this time on a planned visit,) and spent some quality time with family.
I interviewed with the uOttawa Gazette for an article about my disability advocacy, and the photo selected continues to haunt me and freak me out. (Depersonalization when you do a lot of public facing work is nothing short of hilarious. I am half joking.)
And, I launched NEADS’ Back to School Campaign, which gave disabled students a platform to speak out against the incredibly ableist, inaccessible, and discriminatory back to school policies many universities were enforcing.
I knew this campaign had to happen after reading so many DMs and emails from students expressing their frustration, and sharing how alone they felt in fighting back.
While I may joke it was to say “I told you so” to any disabled student that felt alone, I really feel as though the campaign helped us weather an all-together god awful term.
In September, I was busy at work fighting against inaccessible return to campus plans, busy at school living with the consequences of these plans, and busy in my advocacy work raising awareness of the impacts of these plans.
I wrote a very from-the-heart blog about how frustrating it was to see my peers be excited about “going back to normal” while I was figuring out how to graduate without getting COVID or dropping out, and the student paper gave me a platform to raise concerns about the Fall 2022 term’s inaccessibility.
October was my most “normal 20-year-old” months yet.
I celebrated my one year anniversary with my partner, went hiking during Fall Rhapsody, visited my parents in Kingston (we don’t live there, nice try stalkers!) and went on a school trip to Washington, D.C. (where I saw really, really cool stuff from the 504 sit-in – had to get something disabled in!)
And in November, one of my most “not a normal 20-year-old” months.
I attended an event on feminist foreign policy at the Global Centre for Pluralism, skipping a mandatory class workshop to do so (because allegedly I am still a student), and experienced my first international relations open bar event.
Being 20 is great, but I’m not sure that’s a normal 20-year-old activity.
This month also saw not one, but TWO NEADS’ State of the Schools Tour stops!
As part of my job (which continues to blow my mind,) I got to travel to St John’s, Newfoundland and Halifax, Nova Scotia to speak with other disabled students and give them a platform to share their thoughts, experiences, and concerns.
For my job.
I only wish I could’ve recorded my internal monologue while on the plane home after the tour stops, on a flight with free drinks.
Right after the tour, it was International Day of Persons with Disabilities (IDPD) – which is really more of a week.
I had the honour of representing NEADS at Minister Qualtrough’s IDPD reception, where I had to experience an in-person reception for the first time.
Fortunately, people seemed to be excited I existed off zoom and were thus very forgiving of all my little quirks and not-knowing-what-was-going-on-at-all-isms.
Was being in the same room as the disability community’s leaders, MPs, ministers, senators, and the prime minister intimidating? Probably! I would like to thank my poor grip on reality.
And then, December.
On the disability advocacy front, my guest spot on I Am Not My Pain Podcast launched, and I delivered closing statements at Minister Qualtrough’s IDPD Virtual Youth Town Hall.
Being asked to deliver the closing statement by the same team I worked on the UN conference with meant so much to me, and I really enjoyed learning from my fellow disabled youth advocates.
Somehow, I managed to survive exams coming fresh off a tour and IDPD week.
I lived off energy drinks and instant noodles, then went home where I realized how absolutely devastated my body was by this year.
I learned I was turning 21, not 30, and tried not to touch anything work-related (save work at NEADS – you didn’t really think I was capable of a full cold turkey, did you?) for the rest of the year.
I still can’t believe all this was only one year.
I don’t even want to go back and edit all of this because I’m overwhelmed at how much there is to go through.
So, hard pass. I’m not being graded here. Perfectionism will kill me.
I’m saying this as if I haven’t spent hours on this blog already.
I’m not even convincing myself right now. I’m going to stop this tangent.
Editing Carly here: after doing the “editing” where I just section the blog out, I remain unconvinced by my own writing from mere minutes ago.
Future Carly probably remains unconvinced as well.
So, what did I learn this year?
Factually, a lot.
A lot about humanitarian disaster response in the Middle East, and how the Korean Deaf community remains ignored by their government, and how a lot of UN States could not cough up a single disabled member of government for a conference where the theme was meaningful participation.
I learned a lot about professionalism – I’ve imposed a two drink maximum on professional outings and am figuring out when to mask and not mask (again, another blog for another day.)
I learned that you can have breakfast inside of an East Side Mario’s at a Holiday Inn in St John’s Newfoundland, and that you can never get too tired of Booster Juice, especially in airports.
I learned that I’m not the only disabled student that feels alone under the massive rollback of accessibility and disability rights across Canadian universities.
I learned that I’m not the only disabled youth advocate that feels incredibly burnt out and afraid of peaking too early.
But above everything, I learned to slow down. I learned to listen. I learned to appreciate the moment, and the people, and the places, and the experiences.
And that brings me to all the thank yous. For the best year, the best people, the best opportunities of my life – so far.
As I’m learning to become more vulnerable, I’ve found gratitude is somehow the easiest emotion to express. So, please take the one emotion I can adequately express and run with it if you get what I mean.
Thank you to the NEADS team. To my boss Frank for hiring me and keeping me on. To the touring team for some incredible memories and for keeping me in one piece. To the #MyNEADS Community for showing up to our events. To the student groups who remind me that the work we do can be so impactful. To the students who showed up to the tour stops. To the NEADS Partners and Pals.
Thank you to Heather Walkus and the Council of Canadians with Disabilities for not just taking a chance on me as International Chair, but for standing by me and ensuring I have what I need to succeed in this role.
Thank you to all the GAC Disability in Development Working Group members for being so welcoming, encouraging, and energizing.
Thank you to the Fulcrum, the Gazette, Now with Dave Brown, Take A Pain Check, Canadian Arthritic Patient Alliance, The Mighty, and the uOttawa Student Union’s Women’s Resource Centre for giving me a platform.
Thank you to the internet strangers who have commented, emailed, and DMd me to tell me how my writing has impacted them.
Thank you to my colleagues in the public service who have shown me that there is a place for me here, and that I am capable and empowered to make change both in my workplaces and across the country.
Thank you to the Instagram mutuals who support my disability advocacy account tangents, and for showing me all the amazing ways advocacy can happen.
Thank you to anyone who has ever had a class with me for listening when I talk about disability in development, and for my incredibly forgiving profs when I miss so many classes.
Thank you to my friends who keep inviting me to things we both know I’m not going to, and who keep me in the loop online when I am nothing less than a hermit in person.
Thank you to my partner for your persistent support and encouragement, for listening to my rants and getting me hot water bottles, and for your family probably making up like half of my website stats.
Thank you to my family, to my twin for introducing me to advocacy, to my dad for treating me like a regular 20-year-old daughter, to my mom for managing to be enthusiastic without nagging, to my dog who humbles me by trying to kill me, and to my granny who recently subscribed to this blog.
Thank you to anyone who has read any of my work, attended any of my events, or has supported me in any other way.
2022 is already over, but with that the 2022 recap blog is now wrapped. To a 2023 that only feels like one year!
I have this thing where sometimes I don’t feel like a regular human person – like people see and treat me differently, like I can never really be a regular human person, like I’ll never really fit in in any space I occupy.
And while I’ve struggled to explain the feeling itself and the reasons why I feel this way to my (new and super awesome) therapist, an unfortunate ableist experience a few hours ago clicked something in place:
I don’t feel like a regular human person in class, at work, with peers because I am always first and foremost a disability advocate.
Because I am “Carly Fox, Disability Advocate”, before I’m “Carly Fox”, and way before I could ever be just “Carly”.
And when I incorporate my disability advocacy into the many spaces I occupy and into the many capacities I hold, there’s a lot of unrecognized and uncredited emotional labour that goes into this “insider activism”.
There’s a lot to unpack when it comes to insider activism and emotional labour – the power dynamics, the shifting relationships with others, the consequences.
So, may I present a whole blog to explain to you and myself (and maybe my therapist) why I believe I am a regular human person, and why sometimes it feels like everyone and everything (and everywhere, all at once) is forcing me to feel like I am not.
While it feels a little arbitrary to boil down my (allegedly) three-dimensional existence into three clean categories, that’s what we’re going to have to do to keep all these big thoughts and feelings understandable and approachable.
In classes, at work, and across my social networks, my insider activism faces different dynamics and consequences, and has been positive, negative, and everything in between.
At this point in my life and my degree, classes and academic performance are finally not the defining metric of my life – post-secondary just feels like a pyramid scheme anyways.
Deans, professors, researchers, scholarship people – please know this is Carly Fox’s evil twin writing this and she just loves academia so much and will totally never leave it ever and you can also singlehandedly fix her uncompensated emotional labour and all of ableism ever through scholarships.
(To everyone else reading this, it is Carly Fox and that was a little joke.)
Back to class: insider activism at school often requires challenging my own professors and program curricula – while I usually have some cool peers who will back me up, I am metaphorically biting the hand that grades me.
(But hey, grades are usually arbitrary across students, professors, and programs anyways.)
A really positive insider activism experience I had was on the very first day of my sustainable development and resource management class (and my first class of third year) – as a disabled student, I was pretty anxious about this class due to pervasive environmental ableism in the field.
So, when the professor asked what we’re looking forward to learning about this semester, I figured I might as well get the ableism test over right away and shared that as a disability advocate, I’m looking forward to examining environmental ableism within international development and climate action.
My professor, who already knew I was disabled, really, really impressed me with his response acknowledging the systemic ableism within the field (!!!!!), and inviting me to incorporate my experiences and perspectives in class whenever I wanted (!!!!!!!!!!!!)
While I was surrounded by some close friends and didn’t have to self-identify to my prof as he already knew I was disabled, this seriously relieved my anxiety and created a safer and more inclusive environment that has lasted throughout the semester so far.
And now for the negative experience that still makes my stomach clench and heart hurt: in a class where I was routinely called upon and singled out for my disability advocacy, we were working on a hypothetical social innovation and landed on an app tracking wait times across medical clinics and allowing for crowd-sourced ratings of doctors.
Really excited about this (albeit hypothetical) innovation, I brought up how disabled people often face medical ableism in healthcare settings, and how crowd-sourced ratings could literally save lives.
Then, the prof said something about broken legs and elevators, and the class moved on.
The Class. Moved. On.
In a class that stressed “intersectionality”.
With a professor that routinely called on me and singled me out from my peers for disability advocacy insights.
With peers that prepared for my disability questions during their presentation Q & As.
Don’t tell anyone – because apparently some people out there still think I am at least a little tough or a little scary – but I went home and cried right after that class.
Insider activism in social networks gets a bit more abstract – after all, what the hell is a social network anyways? (Aside: I insist on watching The Social Network as a satire, I can’t stomach it otherwise.)
In social networks, I’m challenging my own peers – with or without support from my other peers – with no clear voice of reason or authority to appeal to if things turn south.
The whole “people thing” is already way too much for me – the little nuances in interactions, the “he said, she said”, the reactions and the gossip – I don’t know how other people cope with it.
The most positive experience and outcome of my insider activism in social networks so far has been developing a network of disabled students at my school, and having other disabled students reach out to tell me that because of my advocacy, they felt comfortable advocating for themselves, or even just openly identifying as disabled.
At the end of the day, with all of the bad experiences and emotional labour and frustration – this is what keeps me going. This is what keeps me coming back. This is what makes all of it worth it.
A not so cool at all experience was when I brought up the need for online and hybrid events during 101 week, only to be told it’s “too hard” to try and just not worth it.
I quit within two hours of that – if people aren’t listening to your insider activism and are okay with openly discriminating against you and your community, it’s not worth it.
Run, walk, wheel, hobble, whatever suits you best.
And finally, insider activism at work – the hardest kind (at least for me), and the most consequential (whether positive or negative).
The dynamic here is a serious power imbalance: I’m challenging my senior colleagues or supervisors, and while there are designated HR systems to appeal to if things go south, there’s always a risk of being fired, not being promoted, or not getting opportunities.
And when you have to pay your bills and build up your career to keep up with the cost of living, you aren’t too inclined to take serious risks.
So, my experience here is both positive and negative – because I have not yet risked a negative experience.
(Hey employers! If you put me in positions of power with appropriate compensation, I’ll be able to do insider activism without fear of discrimination – pretty cool! Please do read the consequences section later on though, or I might have to do some insider activism and then this blog is just a big waste of time for both of us.)
When I provided feedback on an accessibility analysis I found somewhat lacking, it was well received but didn’t translate into satisfactory change.
While I understood why it couldn’t translate, it felt like all the awkwardness of pointing out gaps in others’ work was for nothing, and I knew my colleagues felt bad for not being able to fully use my contributions.
Personal experiences aside, those who benefit from insider activism often don’t understand the level of emotional labour required or the power dynamics at play – meaning insider activism and its emotional labour goes unacknowledged, uncredited, and uncompensated.
On top of that, insider activism blurs boundaries in ways mainstream activism doesn’t – introducing a million little nuances and consequences for personal lives and emotional wellbeing.
Sounds bad right? Just wait until we get to the consequences section!!
While many privileged people in positions of power (5x fast) claim to appreciate insider activism, they completely fail to acknowledge that an inequity has to exist within their spaces or systems for insider activism to be necessary.
Yep, if insider activism has happened in one of your spaces – you need to understand that you were complicit in letting discrimination or inequity happen, and failed to recognize this yourself.
In short, it’s a you problem!
No one likes bringing up uncomfortable topics – people get weird, things get awkward, you know how it goes.
But insider activism occurs when a marginalized person has to address the inequity or discrimination that they are facing, in front of people who are complicit or active in creating that inequity or discrimination.
And while people are so quick to call us brave or upstanding for doing insider activism, they don’t understand that more often than not – we do not have a choice!
We. Do. Not. Have. A. Choice.
If we are risking our academic standing, our social reputation, our careers and livelihoods – it’s for good reason. It is because we do not have a choice. It is because we can no longer stay silent and just take the discrimination.
I don’t want to be called a changemaker. A social innovator. An insider activist. I want spaces to already be safe. I want to feel welcomed and included without having to fight for it.
And when I do speak up? When I do take these risks? When I address a major systemic issue that everyone else ignored?
I want recognition. I want compensation. And I want actual change.
Now, back to the main question at hand: is Carly Fox an actual human person? Let’s discuss.
Sometimes insider activism is a choice I make, and other times it is thrust upon me as boundaries between work, class, and my social life all fall apart.
Regardless, once I start insider activism in a space, it permanently – and irreversibly – changes how people perceive me, and how they interact with me.
Let’s start with perceptions – another weird “people thing” I don’t really get.
For me, insider activism is tied up in my personal identity and experiences – so whoever didn’t somehow know I’m disabled (sometimes it feels like I’ve cancelled out my able-passing privilege with how open I am about my disability) now knows.
This can open me up to a whole lot of ableism I could have otherwise avoided.
More often, people know I’m disabled and they know I’m vocal about it.
As I’m expected to do insider activism in literally all of my spaces all of the time (again, is Carly Fox an actual human person?) I can’t blame people who think I only talk about disability, I only care about disability, I am my disability, and I hate absolutely everyone who has ever said a single ableist thing.
But hear me out – when your record keeps skipping, you don’t blame the record – you figure out what’s wrong with the record player.
If I sound like I only care about disability, ask why I’m still having to talk about it all the time, ask why people keep asking me to talk about it.
Believe me, I have a lot of other cool stuff going on (you ever solo hike and stand down a wild turkey?) and would appreciate the emotional and intellectual break.
Perceptions influence interactions – this is one “people thing” I understand quite well. Reality is subjective, nothing is real, wash, rinse, repeat.
So, when I am always doing insider activism in all of my circles and spaces, and people come to expect this of me – they’re going to anticipate it or shut it out.
When people positively respond to my activism, they’re often really eager to learn more – and that’s really exciting and some great allyship!
They also often know that I will continue to call out inaccessibility and ableism, so there’s this weird accountability dynamic where they’re looking to me for validation or are afraid of upsetting me.
As you can hopefully imagine, that’s super isolating and weird for me – especially when it comes from my peers!
Is Carly Fox a regular human person?
And of course, when people negatively respond to my activism they generally stop interacting with me.
And this isn’t great for two reasons, because it means spaces and systems continue to be ableist, and it doesn’t give me a chance to understand why they negatively responded and how I can improve and better relate to them.
Of course, these interactions usually manifest in gossip and what the kids call “shit-talking”. Not too long ago, my friend told me two girls were openly shit-talking me on campus.
But hey, as long as disability is on the agenda, right?
I try not to take it personally, I really do.
I know that not a lot of people are doing what I’m doing (but those that do are so cool and I owe so much to them!!), and above all I know ableism is so pervasive and unaddressed.
I don’t blame people who negatively respond, I just wish they’d give me a chance and open their minds. Or at least give some constructive feedback.
And when the impacts on interacts aren’t obvious, they are subtle. And subtly, for me, is a terrible thing.
Because I will convince myself I’m crazy (which I already am anyways) and will get caught up in trying to figure out what is real, and what is imagined (PTSD does some funky things to your brain folks.)
When people expect me to do insider activism, they’ll either try to avoid disability entirely to avoid pissing me off, or they will try to appease me, to also not piss me off.
Is Carly Fox a regular human person?
I obviously can’t speak much on the avoidance, because it’s, well, avoided.
But I can speak on the appeasement, which is, by far, the #1 culprit of making me feel like not a regular human.
When your peers tell you about event venue accessibility features unprompted, or call you “miss advocacy”, or say during an in-class presentation that they’ve prepared for your disability questions – it’s weird! It is so weird!
It’s more impactful when it comes from my peers, but so much weirder when it comes from my professors or supervisors.
Now, don’t get me wrong – I am so grateful people are listening and learning and acting. It is all I could ever ask!
But I hope it’s not too much to ask that we find a way to do this in a way that can treat me like something at least resembling a regular human person.
Balancing the importance of recognition with the fact that any recognition makes me want to curl up in a ball or just go live in a cave is probably going to be a forever thing.
Showbiz, I guess.
And for the worst part of the subtle interaction shifts – once you start insider activism and it becomes expected of you, you can be boiled down to this one-dimensional person with only one identity factor.
You aren’t like everyone else, and they don’t want you to be.
The thing about disability is that everyone non-disabled don’t understand their proximity to disability until they are disabled.
They don’t want to see you as a peer, because then they’ll realize that disability is everywhere – and so is ableism.
It’s a lot, and I don’t blame them.
Now that we’ve explored some of my experiences with insider activism and how it impacts me in all aspects of my life, let’s get into the wider, infinitely more consequential, y’know, consequences.
(I have been writing this blog for over two hours now, so please let that sentence happen.)
When we ignore the emotional labour behind insider activism and the power imbalances and systemic oppression rendering it necessary, we force marginalized people to fix the discrimination they’re facing – at a major power imbalance, at extreme emotional cost, with serious potential consequences.
And, we don’t pay them for this work.
Most of the time, we don’t even recognize them for it!
Now, for the big argument: if you are relying on marginalized people to fix acute symptoms of the discrimination and inequity you created, you are perpetuating inequity and discrimination!
You are not a good person for “letting” insider activism happen. You most likely did not provide a safe enough environment for the activist to feel safe doing insider activism. This is no one’s first choice.
That’s the main argument here – insider activism will not fix systemic ableism, and expecting disabled people to do that without power, recognition, or compensation only perpetuates it.
It also prevents more disabled people from entering these spaces (especially in paid positions folks!), and it prevents accountability for those complicit in perpetuating this inequality.
Relying on insider activism also often tokenizes the activist, making them a monolith for the entire disability community and ignoring intersecting systems of oppression.
And now, disclaimers.
For the appeasers, the employers, the professors, the peers, anyone and everyone – no one is perfect, and all I ask is that you try your best.
Maybe you learned from this blog that what you thought was an appropriate reaction to my activism was not as appropriate as you thought, maybe it made me feel like not a regular human person – it’s okay!
We are all learning and growing together – own up to it and let’s figure out how to move forward from this together.
You. Are. Allowed. To. Make. Mistakes.
For the insider activists, if you can, please keep doing what you are doing.
This hard work today creates a better tomorrow for all of us.
We should not be in these positions, but we are.
And we unfortunately are going to have to continue hauling ass so that one day, someone somewhere will not have to.
So that one day, we’ll at least be compensated and credited for our work.
But if you are tired, if you do not feel like a regular human person, if you are frustrated or feeling unheard or are burnt out – please, if you can, take a break.
It is all too easy to fall prey to the feeling that the fate of the entire disability rights movement falls solely on our shoulders – that every second not advocating is another disabled person discriminated against, another inaccessible program, another ableist policy.
It might be! Who am I to say it’s not?
But if you’re like me, you can take comfort knowing that you are not alone.
You are not the only one fighting, advocating, challenging, and changing.
We are in this together, and we are a community.
As long as we keep this in mind, tomorrow feels easier. And maybe it will be.
When I first got into disability advocacy, I had only been disabled for a year or two – meaning I had spent the majority of my life as non-disabled. This really influenced how I approached advocacy, and how I was able to relate to non-disabled people in a way that made disability more approachable and relatable.
While the majority of my life has still been spent as non-disabled (and I will not get to the tipping point until 36!), I’ve found that my approach to advocacy has shifted as I’ve embraced my disabled identity and crip culture over the last few years. In short, I began to write for myself and my peers instead of writing for non-disabled people.
But the thing is – I know what it’s like to be disabled. My disabled peers know what it’s like to be disabled. Non-disabled people don’t know what it’s like to be disabled – yet.
And while I believe raising disability awareness and sharing my experiences can help non-disabled people start to understand disability and practice disability allyship – it can kinda be exhausting and overwhelming trying to boil down such a complex and personal experience into something understandable and palatable.
Being a disability advocate is a balancing act between holding the non-disabled gaze by making disability approachable and understandable, and being honest about my lived experience and being accountable to my peers.
My work does not exist in a bubble – if I sugar coat my experiences, other disabled people will be dismissed or gaslit. If I’m too honest about how my disability impacts me, or too nuanced in explaining disability, or try to approach complex or controversial topics – the non-disabled gaze drops.
And that’s a lot of responsibility to hold, especially at twenty!
While I always do my disclaimers that I can only speak to my personal lived experience and that I could never represent every single disabled person within the disability community, I’m constantly mindful that some people choose to ignore this and take my words as The Disabled Experience. That some people think speaking to me checks their Diversity Equity Inclusivity box, or counts as a formal consultation with the disability community. That supporting my advocacy work means supporting the entire disability community, and that supporting me is enough to understand what disability is.
And there I go, dropping the non-disabled gaze again.
Before I was disabled, and even now – I wanted to be told disability is easy. Easy to live with, easy to understand, easy to talk about. But I wasn’t told this, because disability isn’t easy.
While I was loosely aware of disability, I didn’t have a great idea of what it meant. I thought of people in wheelchairs, and people with absolutely no vision or no hearing. I thought the only accommodations were service dogs, wheelchair ramps, and accessible stalls.
When my twin was diagnosed with arthritis two years before me, disability stared me down for the first time. It was complex, and overwhelming, and upsetting, and I didn’t like it at all. I didn’t understand what an autoimmune disorder was, or why my twin was always sick, or why she wasn’t going to school.
Instead of trying to understand, I shut down. I shut down because it was all too much – it was too overwhelming trying to understand that I didn’t even know where to start! I didn’t want to ask my twin about it – it felt too private, and I felt too awkward. I tried googling her disease, but everything that came up was in medical jargon. No one seemed to be talking about the human impacts, no one seemed to be having any human impacts at all.
So, if I still have the non-disabled gaze, please know that I felt the same way you might feel now. Like disability is too much, and that trying to understand it is too hard. But I, and countless other advocates, are doing our best to help you understand.
And all I can possibly ask of you is that you do your best too.
No one is asking you to be perfect – to be an expert on disability, to always know what to say to disabled people, to see inaccessibility all around you.
We’re just asking you to try – and I know that’s easier said than done.
It’s hard knowing where to start, where to go next, and if you’re on the right track.
It’s hard consuming all this complex information, sometimes with conflicting perspectives and definitions.
And it’s hard to understand that disability is not inherently negative, because we were raised our whole lives being told it was.
I know it’s hard, you know it’s hard, I’ve told you it’s hard, you probably agree it’s hard. Glad we’re on the same page. But we’re gonna have to keep going – so that you didn’t read this blog for nothing, and so that I didn’t write it for nothing.
Here are some tips for those new to disability allyship.
I’ve offered some of these across the blog, across my socials, and within my circles – but I’ll offer these and more here for you to check out.
And yes, these are catered towards non-disabled allies – the cross-disability allyship blog will have to wait another day, but these tips can work for disabled people too.
Step #1: Ask yourself, “what is disability? what does disability mean to me?”
Before you start, you have to understand where you’re starting from. When we explore what we already know and why we know it, we can start to find gaps in our understanding our even some biases to unpack.
Step #2: Ask yourself, “am I disabled? could I become disabled? is someone close to me disabled?”
It’s easier to understand something when we can place ourselves in it or near it. We all have some relationship to disability – even if we haven’t discovered it yet! A lot of disabled people don’t even know they’re disabled (read my blog on identifying as disabled for help with this) And a lot of non-disabled people don’t realize there are already disabled people in their lives and spaces,
Step #3: Find out what you want to know about disability – the basics, how it applies to your interests, how it impacts people, the culture – and go from there.
Everyone gets into disability allyship for different reasons – ask yourself why you’re here and what you want to learn, but also ask yourself why you feel this way. Do you want to make your spaces more inclusive? Do you think crip culture is cool (shocker: this is okay to think! it’s really cool!)? When we ask ourselves why we want to know more, we can keep unpacking our pre-existing thoughts and feelings on disability, which can help us learn better and be better allies.
Step #4: Always keep learning – and keep learning from all types of disabled people.
Like every other kind of allyship practice, it’s an ongoing commitment! There will always be something new to learn, or a new event or law to learn about. There’s also a lot of diversity within the disability community – to better understand disability, you need to understand how it affects all kinds of people.
Remember, all we ask is that you try your best. This will probably be some confusing, thought-provoking work – work through it, and I promise it will be worth it. one day you’ll appreciate it. Hopefully, you’ll want to keep learning more about disability, the disability community, and disability allyship.
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.
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!)
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.
You know how I say disability and disability pride is different for everyone because disability is so inherently personal? You’re gonna want to keep that in mind for this one!
To wrap up disability pride month, I chose to solo hike 10km in Gatineau Parc. While a lot of people thought this was a terrible idea on account of my arthritis, fibromyalgia, PTSD, and anxiety (and yes, objectively it was,) I thought it was a fantastic opportunity to honour my disabilities by doing what I love – not spiting them or ignoring them, but incorporating them into something I’ve always loved. And I’m not the only disabled person who loves hiking – there’s a whole movement of disabled hikers challenging how people perceive disability both on and off the trails!
Before I get into the hike itself, we need to talk about the preparation – one of the most important things about hiking!
Since I was solo hiking and coming back from a pretty lengthy hiking hiatus (hike-atus), I honestly had no clue what to expect – most of the women-specific solo hiking advice I received was “don’t do it,” and no one really makes hiking tips for disabled people (don’t worry, tips on solo and disabled hiking are at the end of this blog!)
Despite the discouraging lack of resources, I planned out my hiking routes in a move very similar to my everyday anxious life and packed my favourite joint braces in my daypack. While preparation is essential for a good hike – once you’re out there you’re pretty much on your own, so it’s best to prepare for everything you can.
Now for an ode to queueing: I arrived 30 minutes early to secure a seat on the NCC’s free shuttle bus to the park and stood the whole time in a queue. As an invisibly disabled person, showing up early helps me secure a seat – except for today – once the bus came a ton of people jumped the queue, and I ended up standing on the bus for over an hour.
As you can imagine, it did not feel great and was not the best start to the day. When you have limited energy and ability, a 1-hour standing bus ride throws everything you planned so carefully out the window – and the people who jumped the queue will never know how they made a disabled girl stand for an hour. So, be nice and queue.
One bus ride later I arrived at the underwhelming visitor’s centre, which I would rate an “accessible flop” – accessible, but still a flop.
While most of the information there was largely unhelpful, a tasteful kid’s exhibit taught me there were fishers in the park! (For those who don’t know, fishers are like really big weasels with knives for hands that can slice a house cat in half.) Having spent at least an hour googling animal safety tips for black bears and coyotes, this was equal parts terrifying and hilarious – clearly I wasn’t as prepared as I thought, but I’ve been wanting to see a fisher ever since I learned they exist!
Now for the “accessible” in “accessible flop”: the accessible washroom stall had a sink and tilted-down mirror in the stall! I don’t know what kind of accessible stalls we’ve all experienced, but this was my first time seeing a sink in the stall – and it makes a lot of sense!
I left the centre with this message: you might die here, but it’s probably gonna be accessible. Not bad!
I took the shuttle that runs through the parc over to the accessible Champlain lookout, and found myself in what can only be described as a Friday the 13th Biker Gang Rally if motorcycles didn’t have engines. Yep, this place was packed with bikers (for those that don’t know, parts of Gatineau parc are closed off to cars on weekends, so bikes usually have free reign.)
While the “accessible bus stop” wasn’t barrier free, it was accessible, and the lookout’s stone wall was low enough for people in wheelchairs to actually be able to see the view. Not bad!
While Champlain has an accessible lookout, the trails aren’t universally accessible. Some trails are, and that is wonderful, but I can’t deem it reasonable to ask Gatineau Parc to pave over all of their hiking trails.
Some of you may be surprised that I’m saying this, as I seem to have a reputation for not compromising (or at least I used to before the pandemic happened and I got soft.) There’s a lot of nuance when accessibility and the environment intersect – but I will never excuse eco-ableism.
(A quick aside: London Ontario had a community projects contest that pitted accessible swings for children against initiatives like bat houses and private porch parties. And bat houses won. 4 out of 4 accessible swing initiatives did not receive funding. Bat houses. Houses for bats.)
Back to the Champlain trail!
This 20 minute loop was my very first test as a solo hiker – and unsurprisingly, I didn’t ace it. The trail was completely deserted, and while humans are usually the ones pushing me into hypervigilancy, being so alone ironically invoked the same response.
Knowing I was completely alone and any screams would not be heard, naturally I speed walked the hell out of that trail and did a hilarious step-clap type move down the trail to warn nearby animals.
But it wasn’t enough – around 3/4s through the trail, a bush was suspiciously rustle-y. So, like any rational person, I started clapping at the bush. Applauding the bush. Technically, a standing ovation.
What comes out? A WILD TURKEY.
A. Wild. Turkey.
I was prepared for bears, coyotes, ticks, and fishers – not wild turkeys! And this guy was massive! Luckily, I applauded him offstage (he turkey-walked away), and continued my speed walking.
Once I re-emerged in a more environmentally friendly knock-off Harley Davidson event (the bikers were still hanging out), I sat on the stone wall and asked myself what the hell I was thinking. I realized I was not prepared at all for this solo hike, and decided to skip the longest trail of the day.
That choice lasted for about three minutes before I remembered that the trail has a waterfall.
Completely disregarding the lesson I was probably supposed to learn, I rode the shuttle over to Lauriault and started my next hike – a 1 hour, 15 minute trail (not a loop!) that would take me to the Mackenzie King Estate.
At the start of the trail, I saw an accessible portapotty (and the only portapotty at that site) for the first time and took it as a sign things were looking up. And they were!
I started with the 400m hike to a lookout, where I promised myself I would re-evaluate how I was doing and decide if I wanted to continue with the hike. Having already passed two solo women hikers and a father-daughter duo, this trail felt a lot safer in my PTSD brain. And I was rewarded for my perseverance with a phenomenal appearance by a sapsucker bird – think fluffy woodpecker with black and white stripes.
While this trail was by far the easiest terrain of the three trails I took that day, it definitely kicked my ass the most for reasons I still don’t understand. The Lauriault trail was probably my favourite of the three – it managed to balance my desire for complete nature immersion with my need for people around to at the very least hear my screams in case I was attacked by a bear, wild turkey, coyote, etc.
Emerging into the Mackenzie King Estate so attractively drenched in sweat (we wanted a hot girl summer, right?), I skipped the main stops to refill my water bottle and scope out their accessible flush toilet stall – a novelty in the middle of nowhere. While paling in comparison to the visitor’s centre, it wasn’t coated in giant bugs – so it really surpassed all expectations of middle-of-nowhere accessible stalls. (I know the bugs have dibs out the outdoors, but still. They don’t need to get that close.)
My final stop of the day was at Pink Lake – Gatineau Parc’s most famous, and most instagrammable spot.
While not actually pink, the Lake is a stellar turquoise and apparently shaped like a heart, which somehow makes people stop and think “wow, I gotta get a picture of me here for instagram.”
Not to be a boomer, but you don’t have cell reception out here for a reason – put the phone down! To stand in front of a biologically unique phenomenon, to see centuries preserved in the lake’s weird waters, and to think “yeah I can hold my own in front of this natural wonder” – be humbled!
And one more thing on my boomer rant – what goes on in someone’s head to make them think they are the exception to the “no swimming rule” that keeps the lake’s chemical balance stable enough to be that beautiful? To touch centuries-old plants, literally frozen in time and weird salt-fresh water, and not feel completely existential?
I’ll blog about this some other time, but I really truly do not understand most people at all most of the time.
Back to the actual reason we are here – disabled hiking!
This accessible lookout was, as promised, accessible, and while the view was okay, there was a non-accessible lookout with a better view built right on top of it!
And you might say “well, there’s still an accessible lookout, right? so what’s there to be upset about?”
To which I would reply, “yes, there’s still an accessible lookout and that’s great. but the lookout could’ve been raised and given a ramp so everyone has the same phenomenal view. I’m upset because it sends a message that disabled people need to settle with what they’re given, even when they know it could be better.”
Hope that clears that up, hypothetical person I keep using in my blogs (will this guy ever learn!)
An accessible lookout is also incredibly important for Pink Lake because I swear half of that trail was just stairs! Quick little life hack for you: if you double stairs on the way up, it reduces joint impact and helps you stretch some neglected muscles.
Aside from the stairs, this was obviously the best trail Gatineau Parc had to offer. While I did have to give unimpressed stares to gaggles of instragrammers to access the lookouts scattered throughout the trail, they had gorgeous views.
My favourite lookout was actually a collection of rocks on a cliff’s edge – and I unapologetically sat my ass down there for quite some time!
I sat, I breathed, I drank water, and I was present! Most of my favourite hiking moments are during rest stops – when you check in with your body and realize how far you’ve come, and how far there still is to go. You listen to what your body needs and act on it. And you really take in the view.
So, while I knew it would make an excellent instagram backdrop, I did not feel guilty taking up space and time on my little rock. (I’m not a complete monster either, I took photos for a few groups – group photos of people actually here for hiking are precious and I will always take them!)
While a lot of people know that walking is great for arthritis, a lot of people were shocked I chose to and could hike 10km with arthritis!
I can understand where this comes from, but non-extreme hiking really is just walking with more variety. And because my disabilities are all fighting it out to see who is the most annoying, arthritis isn’t the only one interfering with how I move – my ADHD likes to get mad at me for doing repetitive movements, which can make walking on flat surfaces somehow really difficult!
The variety in hiking makes adjusting my approach natural, and gives my brain plenty of other things to do – like stress about bears. And unlike walking, it’s way more normalized in hiking to listen to your body and take care of your needs!
While people see walking as leisurely, hiking is somehow an extreme sport, and everything from drinking water to stopping to tie your shoes feels less anxiety-inducing. So, take a second to unpack why you think someone with arthritis can walk but not hike, and try to apply that to all different types of activities!
Hopefully, if I’ve been writing right and you’ve been listening enough, you’ll get to a takeaway something like “disabled people get to determine their personal limits and goals the same as everyone else.”
One of the reasons I love hiking so much is because I love pushing my body to its limits – and I loved doing this even before I was disabled!
I can’t explain why I love it exactly, but there’s something about challenging yourself and pushing yourself to your limits that’s very rewarding mentally and physically.
I did it with dancing and singing when I did musical theatre, so to be able to apply this mentality to something that doesn’t put me at an increased risk for a PTSD meltdown was very refreshing!
I think a lot of people with disabilities know what it’s like to be pushed to our limits – whether by ourselves or others – so to do that on my own terms felt empowering and energizing.
There’s a lot of parallels between everyday disabled life and non-disabled hiking.
We’ll start with my personal favourite: pacing yourself and knowing when to take breaks. A lot of non-disabled hikers know they need to pace themselves and take frequent breaks to rest and replenish, the same way a lot of chronically ill people take preventive measures to prevent disease flare ups, or the same way we try to prevent burnout.
Hiking culture, in its most positive form, is about listening to your body and honouring it – not being ashamed or embarrassed to take what you need to feel and be your best.
Other parallels include continuing on a hike despite injury – knowing you shouldn’t do more damage but needing to get to safety or complete a milestone, using walking sticks – literally a mobility aid, and intensely preparing for a hike the same way disabled people often have to prepare for social outings.
Before I let you go, a few tips on disabled and solo hiking.
#1: Never go down a random route/do your research!
Never go into a hike unprepared – you need to know how long and challenging the trail is to determine how to best approach it (think pace and what to pack.)
If you don’t know what you’re getting yourself into, you’ll tire yourself out, run out of water, get eaten by a bear, you name it!
For disabled people, this probably seems obvious – so much of our lives have to be planned out to the smallest detail so we aren’t over-exerting ourselves and doing damage.
#2: Listen to your body!
One of my favourite things about hiking is that it forces you to account for your ability and work with it.
If you try to ignore your low energy levels or injury or bad joint, you’ll end up having to either complete the trail or walk back the way you came.
Trying to ignore your disability only results in more pain – embrace it, and you’ll have a way better time.
#3: Be aware of your surroundings!
While I usually say this and mean creepy men following you, this time I mean bears (and also creepy men following you.)
We can all benefit from doing quick area checks, stopping to listen for noises, making noise to scare away others, etc. And when you’re aware of your surroundings, you can benefit – like when I saw that sapsucker on my hike!
#4: Pack what you need!
This doesn’t mean pack less, it means pack more.
Pack your joint braces, medication, emergency stuff – extra weight might suck, but it usually means you’re carrying something that could save your life.
You never second guess packing a full water bottle – you know what your body needs, so extend that love to your disabilities.
#5: Prepare and share!
Fully plan out your route and itinerary, and share it with your family, partner, roommate, etc – I even went so far as to take a picture of what I wore day of in case we needed an accurate description and missing person photo.
While it might seem like overkill, it’s always better to be safe than sorry – especially when solo hiking. Don’t forget to account for possible delays, identify your closest way to contact emergency services, and research the trails for more information on safety hazards!
And there you have it! We’re packing in, packing out (hiking reference to not littering,) and packing up disability pride month.
Hopefully, we’ll have more disabled hiking content – if not, please settle for just disabled content.
June was an absolutely packed month – I launched an advocacy instagram, re-launched my TikTok, made some infographics, did a ton of press stuff, and attended the 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities – but the blog was undeniably neglected, so blog-first fans please accept my sincere apologies. While I believe social media and external press work is super important, the blog became a blog for a reason – there’s just so much going on in disability rights that needs to be shared, boosted, and celebrated. After a month away from blogging (and what a month!) there’s so many topics demanding my attention – but I think now is an excellent time for the burnout blog.
The most ironic part of all this? Writing the burnout blog is probably going to push me closer to burnout – c’est la vie.
Quick little disclaimer, as is custom: Burnout still isn’t very well understood, and lord knows I definitely don’t know enough about it myself, so please take this blog as it is – a reflection of my lived experience.
While I’ve always had an affinity for burnout, I’ve only recently realized just how interconnected burnout and ADHD are. I’ve always prided myself on being the “do-it-all” girl: knowing everyone, doing everything, being everywhere – obviously, this is not healthy or sustainable (but god is it fun!) And because I’m so late to the game in ADHD counselling, I just assumed I had a stellar work ethic or internal drive (maybe I do, maybe I don’t, probably not the point I need to make right now.)
One of the ways ADHD manifests in me is almost like a motor: I’m constantly moving on to the next task, idea, project, you name it. I compare my ADHD motor to nerve blockers (which, for good reason, I have not been put on for fibromyalgia) – because of it, I’m able to do a lot more, but I’m unable to identify the damage it causes until it’s too late. Take the ADHD motor and add my current need for multitasking and packed routines, and burnout can feel inevitable (spoiler: it is not!)
When I first realized I was burning out around the second semester of second year, I took the “work smarter, not harder” approach – and I really thought I was doing something! I tried all different kinds of scheduling tips, methods to analyze information faster, and drilled Muse’s “Supermassive Black Hole” into my skull on repeat (Spotify Wrapped 2022 better pull through!) Shockingly, this approach didn’t work – because I learned to do more in less time, I started to take on more (hello, Carly Fox Disability Advocacy predecessor!)
Still aware of my proximity to burning out, I turned to self-care – or more accurately, attempting to be 100% perfect at self-care (you already know where this is going.) I drank tea, did yoga, read mental health magazines, watched my breathing, listened to frequencies, and meal prepped. And while all of this was great, it was unhealthy! You’re gonna ask, “Carly, how is that unhealthy? That’s pretty much a top 10 list of healthy activities.” To which I’ll reply “Because I made it unhealthy!”
I made self-care unhealthy by being relentless at it, forcing myself into a very intense self-care regime and tuning out what my body actually needs. One night, I put the mental health magazine down to watch Netflix and realized – self-care isn’t just “healthy” activities, it’s about balance and listening to your internal signals. As it turns out, I was just forcing myself into a new type of productivity and overwhelming myself with new tasks in the name of burnout prevention.
My current approach, though clearly imperfect based on my present mental state, revolves around mindfulness. Especially when you have ADHD, PTSD, and GAD, you can do a lot without even realizing you’re doing it. When I remember to breathe and be present, it can feel like snapping out of a blackout period or a coma. I realize that I’m eating too fast or not at all, that I’m not breathing enough, that I’m not actually doing the work I’m supposed to. When I’m in Motor Mode (as I will now call it), it’s like I’m doing everything everywhere all at once (another side note – watch that movie, incredible.) And not being truly conscious or aware most of the time is not my preferred way of living! Just being conscious of how my brain and body works allows me to identify unhealthy behaviours and habits, and work towards building safer routines and processes.
In today’s society, burnout feels dangerously inevitable – and even glorified. Hustle culture reigns as we pretend working three+ jobs is healthy, desirable, or even part of progress. We are expected, from a very young age, to be accomplished, busy, always progressing towards the next goal. We find ourselves in a dangerous pattern of always wanting more – more money, more recognition, more material items, more fame. I find myself saying “once I reach x position or x pay I’ll calm down”, but I’ve realized that once I do, I’ll just want the next step as soon as possible. And when all you can think about is that next raise or promotion or event booking or award, you don’t really stop and appreciate the life around you. And I don’t think my life has ever been better – so to possibly throw all of that away just to get up one more step in the ladder feels like an absolutely terrible deal.
A lot of burnout risk factors are structurally and systemically determined – we’re operating in systems of oppression and profit that see us as inputs before human beings. But by being aware of the dangerous behaviours harmful systems normalize, we can address them and advocate for change. We can understand that burnout is not inevitable or desirable, but preventable!
For me, the best things I’ve done so far to cope with burnout are determining my non-negotiables, saying no and asking for help, and working on my intuition.
Learning about non-negotiables has been such a game changer! Essentially, you determine what 100% has to stay in your life – think sleeping, eating, being with family and friends. Then, you determine how much of these non-negotiables you need and carve out the appropriate amount of time. This can be an excellent way to re-examine how you value your time, resources, health, and social life. It can also make you feel more confident in advocating for your needs and setting boundaries.
Saying no is so much easier said than done – but it’s truly an essential skill. To start saying no, you have to start saying yes to yourself – acknowledge you are a human with human limits! You aren’t a machine – you can’t work around the clock, you can’t work at one rapid pace, and you can’t ignore your basic human needs. Once you understand that you are limited in your capacity, extend that compassion to others – shockingly, those around you might also be humans with human stuff going on. And when you extend that compassion, it’s going to create a more empowering environment where others feel safe to set boundaries, help each other out when possible, and acknowledge that, they too, are humans. Groundbreaking stuff, I know.
An essential part of recognizing you are a human is saying no and delegating. If you’re getting too many tasks at work, delegate or ask for help and call it emotional intelligence, collaboration, or leadership skills. If you’re too overwhelmed with volunteering or community work, build up the team around you by mentoring, allowing younger members to shadow you, and building relationships with others. If it’s with family and friends (the hardest things to say no to!), exercise boundaries where possible and safe – if these people love you as much as you love them, they’ll support you in safeguarding your wellbeing.
Of course, a disclaimer: Sometimes, we aren’t in a position to say no – especially when we work for a non-livable wage, have dependent friends or family members, or feel desperately needed by our community. As a white woman with stable employment and support systems, I recognize being able to say no is a privilege that largely stems from how I benefit from oppressive systems.
So, there’s your burnout blog. Not comprehensive, but authentic enough and very reflective of a close-to-burnout brain. Actually, I’m not even going to edit this one – burnout brain doesn’t make me feel good, and hiding how burnout impacts me while trying to dismantle stigma feels pretty ineffective.
Now – where do we go from here? Check this out – I’ll start by setting some boundaries (woah, Carly’s taking her own advice – that’s a first!)
While I used to aim to have a blog up weekly, I think two regular blogs per month starting in the Fall once I’m back to regular part-time is reasonable. I’ll also aim to prioritize the blog, events, and training over TikTok and Instagram content (because that stuff just circulates forever – the algorithm is terrifying.) And finally, Mondays are off limits – while one day a week won’t be enough, it’s a solid start.
Now what does this mean for us, [random internet person/loose acquaintance/good friend/solid fan]? Not too much! For the website, I’ve included a burnout watch on the home page and will be uploading my infographics and tiktoks so you can find my content all in one place. For the socials, I’ll clearly signal when my DMs are closed. For events, consultations, and trainings – I’ll probably still keep doing what I’m doing, consider this my weak spot for boundaries (they are just so fun, and I really do find them the most revitalizing advocacy method.)
And with that, the burnout blog is closed. Be kind to yourselves, seek professional help where needed and accessible, and be nice to others!
Even when life can be a little bit too much of an on-fire garbage can, we can work together to take those flames out (or like, flip the can really fast – I think the science behind that checks out.)