While you might’ve been watching the Opening Ceremonies for the 2026 Milano Cortina Winter Olympics, I was… also doing that.

But to beat the crowd and hopefully remind non-disabled people that the paralympics exists, I was also reading up on every single mascot the Paralympic Games has ever had – for better, or for worse.

In what should only be read as a lighthearted comedic blog and absolutely not my entry into diplomatic commentary, please enjoy my personal ranking of every Paralympic mascot – from 1980 Arnhem to 2026 Milano Cortina.

22: Blaze (1996 Atlanta Summer Games)

Boring!

This fire chicken looks like he would have bullied disabled kids at recess. He looks like he sits in the accessible seating section of the bus, and doesn’t even look up when someone with a walker needs that seat. He looks like he double parks in accessible spots.

I don’t trust this guy with an open flame, I don’t trust him with the PR of disabled athletes. 

Next!

21: Ray of Light and Snowflake (2014 Sochi Winter Games)

Obviously, their appearance is unsettling. Looking like 2000s Microsoft Office assistants cursed with sentience, they make you check your surroundings out of the corners of your eyes.

But their appearance is unfortunately the least jarring thing about these two.

You would assume they are humans, and would believe this is a creative reversal of the tendency to dehumanize disabled people – particularly with the olympic mascots being a polar bear, hare, and leopard.

Nope!

They are actually aliens! That look like humans! Space travellers who came down to earth to invent sledge hockey and wheelchair curling! 

THEY AREN’T EVEN DISABLED!

What makes this harrowing entry even worse, is that these things were voted by a jury of Paralympians.

Sometimes, it’s your own people.

20: Mandeville (2012 London Summer Games)

Another entry from the 21st century that has you squint, tilt your head, and ask “what the hell were they thinking?”

Mandeville, named after the city that failed to provide a proper peer to Dan D. Lion during the 1948 Summer Games, is literally a piece of metal.

A piece of leftover metal from the rafters of the Olympic Stadium.

Don’t worry, it gets worse.

His eye is a CAMERA. 

Which I do not believe is a clever take on how disabled people are under increased social surveillance and pressure to conform.

Not even remotely.

This personification of the panopticon or police state, depending on your persuasion, represents friendship.

Keep your friends close, and keep whatever this thing is far, far away from me. 

19: Aster (2006 Turin Winter Olympics)

It is worth noting that, compared to the Olympic mascots that year, Aster is only somewhat ugly.

It is also worth noting that Aster existed in a time before the phrase “liberal snowflake tears” would characterize a time of increasingly violent political polarization.

HOWEVER!

The idea of a snowflake representing how we (and by we, they mean us disabled people, not we) are all different?

Especially since the paralympics are based on categories designed to group disabled people that are as similarly disabled as possible.

Listen, in the pre-Glee era, this was probably a breakthrough. If it works it works, and it works until it doesn’t.

18: Dan D. Lion (1948 Long Island & Stoke Mandeville Summer Games)

Let’s all give Gramps here a hand for being the mascot of (what is generally considered to be) the first ever Paralympics!

Or at least, half of it. (The other half, occurring in Mandeville, UK, was mascot-free.)

Created by a local art teacher and named by a class of severely physically disabled students, Dan D. Lion has heart. He was accepted by the community. He was the original ally.

He also has a kind face and a whimsical aura. I would ask him to watch my drink at a bar. I would not feel the need to cross the street if I was walking alone at night.

Dan D. Lion was unfortunately implicated in a Soviet Bloc boycott of the Olympics – where a boycott of the paralympics was deemed unnecessary because they “didn’t have disabled people.”

Weird thing to say! 

Let’s move on.

17: Fu Niu Lele (2008 Beijing Summer Olympics)

Listen, she’s cute, she’s whimsical, she’s forgettable.

Apparently she symbolizes both the striving of para-athletes for progress, and mankind-nature relations.

Which is great and all, but when the Olympic mascots are the Fuwa (good luck dolls based on the five natural elements) – I want more than a panda.

You know what a great element is? Style. Flare. Personality.

16: Parabbit (1998 Nagano Winter Games)

Honestly, I don’t know what to make of Parabbit.

I think the school kids that voted on the name absolutely knocked it out of the park here: para, rabbit, parabbit. Incredible.

But I’m not sure what it is supposed to represent. Who this thing is trying to be.

And above all, why it only has one ski pole.

15: Proteas (2004 Athens Summer Games)

This cute little guy seems absolutely whimsical, until you learn the Olympic mascots that year were HUMANS!

Tell me what is wrong with this picture:

olympics = humans

paralympics = seahorse

And it gets worse! Apparently, a seahorse was selected to “convey the nature of the competitions.”

WHAT NATURE?

Now, if someone did somehow develop a mermaid tale it would absolutely qualify as a disability. However, until that happens, I’m not understanding the whole seahorse-disability connection.

14: Lizzie (2000 Sydney Summer Games)

Now this is where the ranking really starts to kick off.

May I introduce the court to a frill-necked lizard voiced by Olivia Newton John?

May I also introduce the court to the only official mascot not arguably upstaged by folk hero and controversial unofficial mascot, Fatso the Fat-Arsed Wombat?

Further, may I also also introduce the court to Fatso the Fat-Arsed Wombat?

Australia, keep doing you.

13: Paralympic Phyrge (2024 Paris Summer Games)

Besides… that… and it not having a name…. and it looking like that…

Look, at least “Paralympic Phyrge” (its apparent government name) is disabled. At least it is showing off that prosthetic. 

PP, as I’m calling it, is also described as a “party animal”, “spontaneous”, and “a bit hotheaded.” 

Now that is disability representation. 

(It better get better than… this.)

12: Bandabi (2018 Pyeongchang Winter Games)

You are going to look at Bandabi and think, “aw, cute!”

NO! It is a half-baked recycled imitation of the beloved Gomdoori – a former (and better) Paralympic mascot from the same damn country!

Now I love Asiatic Black Bears more than the average person, but I KNOW South Korea has more to offer.

Ignoring the fact Bandabi’s existence is a disparaging spin-off, I’m arguing Bandabi is a bisexual icon.

With banda meaning half moon, and bi meaning celebrating competition, this is the disabled bisexual icon we have been waiting for!

Unfortunately, our newfound icon is a controversial public figure: Bandabi was described as representing the enthusiasm of the players in the Paralympics so that they can overcome their limitations.

Bandabi is secretly ableist, pushing disabled people to be less disabled.

A sleeper ableist, if you will.

11: Noggi and Joggi (1980 Arnhem Summer Games)

To continue our tour through the old folks’ home, let me introduce you to the OGs.

Yep, the squirrels were the first every Paralympic mascot – a mere eight entire years after the first Olympic mascot was introduced in Munich…

While squirrels were chosen because they “frequent the forests surrounding the arena” (read: literally lying around), they were seen as representative of Paralympians as they “crack hard nuts.”

WHAT DOES THAT MEAN!

As you can clearly tell since one of these squirrels is a pantsless freak and the other is wearing a dress, they are husband and wife.

Which, in a way, is the biggest win for disabled marriage equality to date.

(Disabled people risk losing their provincial disability assistance benefits if they marry and their household income increases, whereas squirrels don’t believe in the institution. Legislated disability poverty, not marriage.)

These squirrels were also created from a crocheted model, and if I’ve learned anything in my time with arthritis, it’s that chronically ill people love little crafts.

10: Shuey Rhon Rhon (2022 Beijing Winter Games)

I think Shuey Rhon Rhon is just delightful! And sometimes, that’s all we really need a mascot to be!

This sweet perfect angel is a Chinese lantern, representing harvest, celebration, warmth, and light while ringing in the Chinese/Lunar New Year!

The attention to detail is fantastic: her design incorporates paper-cutting art and a pattern of a dove and the Temple of Heaven – but I want to focus on her face.

Allegedly, the “snow” on her face promises a fruitful year – but I know better. Our queen, our icon, our peer is disabled just like us.

Shuey Rhon Rhon has a facial difference, only she’s not ready to own it yet. 

But I believe that if we, as a community, band together, we can create the empowering space she needs to embrace her true identity.

9: Petra (1992 Barcelona Summer Games)

The only reason the first actually disabled Paralympic mascot is ranked here is because, when compared to the infamous Cobi, you can tell she was treated as an afterthought. 

And because, with love and respect, she’s just a girl! I get we’re going for beauty and perseverance in the ordinary or whatever, but a mascot is supposed to be a mascot!

Petra is actually based on mascot designer Javier Mariscal’s friend and plastic artist Lorenza Böttner, who was a trans woman with dual arm amputations and HIV.

Which is a beautiful tribute to such an influential friendship, and incredibly progressive for its time, but it goes beyond caricature. Which means, it can’t be a mascot.

Petra, you are so many things that calling you a mascot seems diminishing.

8: Alpy (1992 Albertville Winter Games)

While he might not be the peak of Paralympic mascots, he is the summit of Grande Motte mountain!

I am also choosing to believe this guy is disabled.

He appears to be on a mono-ski, minus the whole sitting in the bucket part – at first glance.

Yet upon further consideration, I asked myself: do mountains have butts? What if he’s sitting on the mono-ski bucket, and we just can’t see it?

While I don’t need to see it to believe it. That’s disabled kin.

7: Someity (2020 Tokyo Summer Games)

Somehow, this superhero manages to avoid the whole super-crip overcoming narrative through sheer love of the game.

Our invisibly disabled icon is locked and loaded with superpowers – just like her Olympic counterpart! 

While superpowers are usually invoked to “inspire” the non-disabled   and make our lives as disabled people look like something terrible to overcome – Someity bravely shows us how sick having superpowers would be for most of us.

Telepathy? I get to communicate with my brain. No need to enunciate my words (did you know I had a speech impediment? fun fact…), no need to make sound, no need to hear sound in return.

Flying? That sounds like a low-impact activity for my joints, count me in. The idea of being able to just fly places instead of trudging through the snow or fighting for my life on public transit is simply overwhelming. 

Telekinesis? Moving things with your mind might be the ultimate mobility aid. Imagine it: you come home after work, in spoon deficit, and can’t physically cook dinner under the exhaustion. Then, you just think about making dinner – and it happens. 

You drop something outside of your mobility range? Swoop, back in your hand, just like that.

Annoying ableist questioning your disability or giving you weird looks in public? Throw them into the sun!

(If there’s some sort of Captain America-style superpower program going on, I am free.)

6: Tom (2016 Rio Summer Games)

Carrying on with the theme of unexpected accommodations, Tom represents Brazilian nature and can pull anything out of his branchy head. Anything.

That cost-prohibitive walker? There it is.

An ergonomic mouse? Here ya go.

A wearable heating pad? Get at it!

Now I wouldn’t say that Tom is disabled himself (though who am I to speculate, really) – Tom is disability ally #1.

But he isn’t loud about it.

He knows allyship is an active practice embedded in accountability to the community you’re in solidarity with.

Tom doesn’t take up space in the room, he makes space in the room. 

Forget a seat at the table, Tom will pull a seat out of his head for you.

Thank you, Tom.

The only reason Tom is ranked here and not higher, is because he was not thrown into the wrestling ring by coaches to challenge referee’s calls the same way his Olympic counterpart was.

All I’m asking for is equal treatment. Equal commitment to the bit. Controversy based on our actions, not portrayal.

5: Otto (2002 Salt Lake City Winter Games)

At first glance, Otto just appears as a regular old (kinda swaggy) sea otter.

But he’s so much more than that.

First, he vehemently rejects extractive capitalism.

With the three Olympic mascots Powder, Copper, and Coal named after natural resources, Otto rejects the exploitation of our natural world for capitalist profit. Otto instead embraces nature, going so far as to be an otter himself.

That’s commitment!

While this is purely speculation, I’m going to argue Otto is rocking some form of neurodivergence. 

The goggles and the gloves? Despite being a sea otter, physically designed to self-insulate and remain waterproof? To address his sensory sensitives. 

Avoiding bad textures and bright lights, Otto also loves para skiing and ice sledge hockey – though, of course, he wouldn’t actually be allowed to compete. 

Not because he is an otter, but because he wouldn’t fit in the classification categories.

4: Sumi (2010 Vancouver Winter Games)

Canadians, please do not kill me for putting Sumi 4th.

Listen, Sumi (and MukMuk, and Quatchi, and Miga, and no I didn’t have to look that up) did the impossible: they treated the Olympics and Paralympics so equally, I had no clue Sumi was the Paralympic mascot. I really, at the time, had no idea there was a Paralympic mascot. 

Because they operate as a pack, it didn’t really give Sumi the time and space to shine – which is the only reason she’s at 4. That, and she’s just not disabled. 

Speaking of pack, MukMuk was working double time – acting as sidekick for the Olympics and Paralympics. Sounds like hyperactive ADHD to me, but this is supposed to be about Sumi.

Sumi is absolutely dripped out, wearing the hat of an orca whale, the wings of a thunderbird, and the legs of a black bear. Her name comes from Sumesh, the Salish word for guardian spirit, and I know she guarded over me as I played her online computer game for hours.

For teamwork, nostalgia, and mainstreaming, I’m happy to put Sumi at 4th.

3: Sondre (1994 Lillehamer Winter Games)

What a fascinating guy.

In what has become one of the more intriguing trends, this is not the first time we’ve seen a non-human mascot when the Olympic mascots are… well… human.

And this feels a little worse because he’s a troll. Like an actual troll.

One of those Norwegian trolls. And like, maybe I don’t know enough about these dolls and should assume it’s some sort of compliment… but why the hell is is a troll?

That aside, Sondre is one of us. And we should uplift our own. It’s not his fault he’s a troll.

But he is responsible for being a skier with enough confidence to wink at us as he flies by. 

Not only is he disabled, he’s an athlete. He has personality, and he’s not afraid to break the mold. 

And somehow that really checks all my boxes here.

2: Gomdoori (1988 Seoul Summer Games)

I promised you would meet him and here we are: meet Gomdoori.

One of the first entries into Paralympic mascot history, I think they knocked it out of the park!

First, there’s a real story: Gomdoori (plural?) are Asiatic Black Bears, also known as moon bears, modelled after the constellations of Ursa Major and Ursa Minor.

That’s the level of creativity and cultural tie-ins I expect.

Now, this is the part where you’re asking: Carly, are they disabled or not?

Who am I to say?

They both have arthritis.

My rationale: my arthritic twin and I (also arthritic) have CRUSHED every three-legged race we have ever participated in. 

Which clearly means these bears have arthritis. 

I don’t make the rules.

The two bears being tied together is supposed to represent brotherhood, guidance, and cooperation between the Olympics and Paralympics – but we all know it’s a cleverly subtle cultural critique of the portrayal of disabled people as dependent.

The Gomdoori (now confirmed to be plural) also subvert another common portrayal of disabled people – taking us from victims of violence to perpetrators.

I do not know why the hell one of them has a stick menacingly gripped in their hand – I just know they’re armed. 

Too often, disabled people are only considered victims of crime. And wouldn’t true equality empower us to commit crimes on an equal basis with our non-disabled peers?

I think we all know the answer to that.

1: Milo (2026 Milano Cortina Winter Games)

No one else could have been number 1 here. And it wasn’t even close.

As far as I’m concerned, Milo has reinvented the wheel – giving us a refreshing, stylistic, meaningful, and youthful mascot with personality, poise, and persistence.

A stoat, just like his Olympian sister, he’s meant to symbolize innocence and purity. And while this could have easily veered into paternalistic territory, this innocence is celebrated – equally so at the Olympics! 

While it’s first instinct to shrug off anything remotely resembling harmful stereotypes, it’s important to recognize we contain multitudes – some of us are pure and innocent, and Milo isn’t afraid to lean into that!

Milo and his sister, Tina, are also the first officially Gen Z mascots. I think Gen Z is going to seriously challenge and alter how we think about disability, so Milo is definitely representing the community in a reflective way.

Speaking of youth, what terrifies me about Milo and Tina are that Italian schoolchildren drew them. Aged 6-14. What are they feeding them over there? Genuinely?

And we haven’t even got to his disability yet. Milo is disabled – on purpose! I don’t have to come up with some backstory!

Milo was born without a right leg, and uses his tail in a prosthetic-adjacent manner. And it’s not in your face at all, the way non-disabled portrayal of us tends to be. The media portrayal sees Milo’s disability the us disabled people tend to see each other – as we are.

You’ve gotta watch this clip introducing Tina and Milo (again, on equal, snowy grounds!) Not only does Milo get equal screen-time, he’s an utter shithead! 

The video quite literally opens with him launching a snowball in his sister’s face. Equally capable of violence. Beautiful.

Milo also has a personality – he’s an inventor! And while I’d be wary of Milo contributing to the growing wave of technoableism, where technological interventions are designed to ‘solve’ disability, I’m considering him innocent for now.

With an actual personality, incredible design, and a delightful narrative, Milo was always the clear winner of this ranking. 

I just put it here last so you had to read through the whole thing.

Where to Watch The Paralympics In Canada

CBC Gem will be streaming the paralympics for free online at https://www.cbc.ca/sports/paralympics/streaming-schedulefrom March 6th at 1:30pm ET all the way until March 13th at 11:30pm.

Sources

Wikipedia’s List of Paralympic Mascots

International Paralympic Committee’s Paralympic Games Mascots

Welcome back to the Blogging to Berlin series, where I try to cram in as many blogs as possible before the 2025 Global Disability Summit!

I’ll be so honest – this was supposed to be the last blog in the series. However, Canada’s review by the United Nations Committee on the Rights of Persons with Disabilities is simply too good to ignore.

So make sure to stay tuned for that, or to see if I can survive midterms on top of all of this advocacy work! Whatever floats your boat.

With all that being said, I am very excited to get into federal disability and accessibility legislation across Canada! This blog will cover the Canadian Human Rights Act, the Charter of Rights and Freedoms, the multiple bills around Medical Assistance in Dying (MAiD), the Accessible Canada Act, and more!!

Trigger Warning: Medical Assistance in Dying

1977 Canadian Human Rights Act

Read Here

The CHRA is best known for prohibiting discrimination against a number of protected groups – including on the basis of disability, age, race, and sex. More recent court interpretations have also expanded this clause to include gender identity and sexual orientation, reflecting how the Act is able to evolve to meet the times.

The Act prohibits discrimination against any of its protected groups in terms of employment, goods and services, accommodations, compensation, and policy. AKA, everyone deserves equal access to everything.

As disabled people face unique accessibility barriers around the built environment, the Duty to Accommodate is most often referred to when detailing what employers, business owners, and policymakers must do to ensure persons with disabilities have that equal access to all aspects of life.

Of course, whenever there is a duty to accommodate – some people will try to get out of it. The Act outlines that there must be a bona fide reason to not provide the accommodation on the basis of health, cost, or safety. A bummer it has to be included, but very much so time saving as the bar to not accommodate is quite high!!

The Act also created the Canadian Human Rights Commission, and the Canadian Human Rights Tribunal. These two institutions are central to human rights-based legislation at the federal level. The Tribunal is the highest human rights court in Canada, and often presides over high-level human rights cases that have made their way through the lower courts. The Commission takes on a wider variety of tasks, including the monitoring of the implementation of the Convention on the Rights of Persons with Disabilities (CRPD)!

1982 Canadian Charter of Rights and Freedoms

Read Here

The Charter was introduced as part of a larger effort to update Canada’s 1867 Constitution and further cement its independence from Britain.

While many Canadians are familiar with the 1982 Constitution Act that introduced the Charter, fewer know that the Charter is only Part I of the Act – with the second Part recognizing and affirming Indigenous treaty rights!

The Charter itself guarantees all sorts of fundamental freedoms, democratic rights, mobility rights, equality rights, and official and minority language rights to everyone residing in Canada.

The Charter is the overarching law in Canada, and proposed or enacted laws can be challenged through “Charter Challenges” – when people argue that the law violates any article under the Charter.

This means that the Charter effectively acts as an important safeguard to ensure all future laws honour the key values of the entire country, while ensuring the safety and inclusion of protected groups.

Section 15 of the Charter, like the Canadian Human Rights Act, provides equality rights to protected groups on the basis of race, ethnicity, mental or physical disabilities, and more. Interestingly, sub-section 15 (2) allows for discrimination when it benefits protected groups, such as targeted employment programs or women-only spaces.

And maybe even more interestingly (or frustratingly) – disability was almost excluded from the Charter.

You heard me. They almost passed the Charter without including disability as a protected ground.

Why? (GREAT question!)

They argued that disability was “too vague”, and would cover too many people. To which I immediately point out that sex would protect 50% of Canadians!

However, thanks to the tireless efforts of the disability community – including a protest on Parliament Hill led by what is now know as the Council of Canadians with Disabilities – the committee drafting the Charter would finally give in.

As someone who grew up with the Charter, I think it is so important for us all – disabled and not – to realize just how close we were to passing this landmark document while excluding disability.

Disability rights have always been precarious – and just because they’re now included in our Charter, doesn’t mean we can stop fighting to ensure disability rights are respected, protected, promoted, and fulfilled by the courts.

2016-2020 Medical Assistance in Dying Provisions

MAiD is legally complex – and I will not pretend to be an expert on it! But I have pieced together a timeline of the rulings and Federal Acts that have brought us to where we are today.

The 2015 Supreme Court case Carter v Canada ruled that physician-assisted suicide must be decriminalized, to provide equal access to end of life and to ensure the liberty of persons.

To fulfill this SCC-required change, Bill C-14 introduced MAiD as an option for those with reasonably foreseeable deaths seeking physician-assisted suicide in 2016.

However, in 2019, the Superior Court of Québec ruled in Truchon v Attorney General of Canada that MAiD discriminates against disabled people without reasonably foreseeable deaths.

Shockingly, this ruling was accepted at the provincial level – meaning the Attorney General chose not to appeal this decision for the Supreme Court of Canada to review!

Instead, the government introduced Bill C-7, which expanded the eligibility criteria as required by the Truchon ruling. This expansion is generally referred to as “Track Two MAiD”.

As MAiD expansion began, Parliament had to study who would become eligible under potential future interpretations of the law, what safeguards were in place, and the potential impacts it would have on the wider public.

A particularly controversial route of expansion was to provide MAiD to those solely with mental illnesses, including “mature minors.” After significant public pushback, Bill C-39 permitted the delay of further MAiD eligibility as required by Bill C-7.

As you can see, MAiD did not come around in the same way as other disability and accessibility legislation did. Instead of a conscious government effort to create legislation, bills around MAiD were reactions to court rulings.

2019 Accessible Canada Act

Read Here

The 2019 Accessible Canada Act is a key component of Canada’s CRPD ratification strategy, and builds upon the commitments Canada has made by signing onto the CRPD.

The Act sets out a goal of realizing a barrier-free Canada by 2040, and applies to areas of environment, the built environment, transportation, communication, information and communication technology, the design and delivery of programs and services, and procurement.

The Act mainstreams the principles of dignity, equal opportunity and participation, meaningful choice, disability considerations and consultation in policymaking, and striving for the highest level of accessibility.

Virtually all federally regulated entities are subject to the ACA, and must publish both accessibility plans and progress reports within a 3-year cycle. As of 2024, government departments and crown corporations have completed their first accessibility reporting cycle! These Accessibility Plans and their progress reports are available to the public, as well as an anonymous feedback mechanism.

The Act also created the Chief Accessibility Officer, the Accessibility Commissioner, and Accessibility Standards Canada.

The Chief Accessibility Officer is tasked with advising the Minister on accessibility and providing updates on the completion of accessibility plans, while the Accessibility Commissioner operates out of the Canadian Human Rights Commission and is able to issue fines and legal warnings to departments failing to comply with the Act.

While the Act can seem very nerdy and restrained to the federal fishbowl, as I like to call it, it has actually been a very impactful tool with a wide scope of impact!

Requiring every federal department – such as Environment and Climate Change Canada, Employment and Social Development Canada, and the Justice Department – to identify their own accessibility barriers and identify concrete plans to remove them on an ongoing basis means that the programs and services they provide to Canadians will become more accessible and disability-inclusive over time!

2023 Canada Disability Benefit Act

Read Here

The 2023 Canada Disability Benefit Act aims to address the pervasive poverty impacting working-age Canadians with disabilities through enacting a federal monthly direct cash transfer, on top of provincial disability supports.

The Act required that the Government enact regulations detailing the development and delivery of the benefit within 12 months, and that two progress reports detail commitments to engaging and collaborating with the disability community.

The proposed total amount of $6.1 Billion for the Benefit was introduced in the 2024 Federal Budget, and the proposed $200/month amount and Disability Tax Credit eligibility requirement was fiercely protested by the disability community.

Interestingly, this budget line included a clause I’ve never seen before that explicitly states the overall $6.1 budget line cannot be increased. Despite this clause in the budget, consultations largely revolved around raising the rate and removing the DTC requirement.

Despite the consultations, the Canada Disability Benefit Regulations came into force on March 3^rd, 2025, identical to what was promised in the 2024 budget despite extensive consultations.

Federal Accessibility Standards & Regulations

Learn More

Accessibility Standards Canada was created by the Accessible Canada Act and mandated to coordinate technical committees responsible for drafting accessibility standards for consideration to become legally enforceable regulation.

ASC is Canada’s first majority disability-led federal entity, with the Board of Directors and Technical Committee both required to maintain a disabled majority to ensure appropriate and diverse representation in the policymaking process!

ASC has successfully completed draft standards on accessible-ready housing, emergency measures, outdoor spaces, plain language, and the built environment, and successfully published standards on employment and Information Communication Technology (ICT).

While the standards and regulation process is particularly nerdy, legally-enforceable standards (regulations) will require the removal of many pervasive and persistent accessibility barriers.

Further, the technical committees bring together incredible disability advocates with lived experience and in their own areas of professional and academic expertise to ensure the standards include a wide variety of considerations!

Carly Commentary

While I had the bullet points laid out, I generally wrote this bad boy in bed with the flu. So I’m 50% sure it will make some sense.

Generally speaking, it so interesting how Canada consistently emphasizes accessibility over disability. Of course, accessibility is the entry requirement of inclusion – but when the Americans with Disabilities Act is just over the border (for now…), it makes you wonder why our approach was so different.

The whole federalism thing is also on my mind. Canada is a massive country with a lot of regional differences and considerations – so it makes sense a lot of the work is devolved onto the provinces. However, I am shocked at the lack of required collaboration and coordination.

More importantly, most Canadians don’t follow the legislative process. It’s a confusing process that took me years to learn how to follow. And I was only able to pick up that skill because I had the time, funding, and energy!

One of the reasons I am such a policy/legislation nerd is because I want to help more Canadians understand their rights, the legislative process, and how all of these bills impact their everyday lives.

So I hope this blog could help you better understand the federal disability and accessibility legislation in Canada, how it came to be, and how it impacts you day-to day!

(I am going back to sleep now.)

Welcome back to the Blogging to Berlin series, where I try to cram as many blogs on disability rights in Canada as possible into the remaining weeks until the 2025 Global Disability Summit!

This week, we’re travelling coast to coast (for my international friends, Canadians LOVE saying this) and exploring provincial accessibility legislation across Canada!

Spoilers: 8/10 provinces have enacted accessibility legislation. Quebec was WAY ahead of the curve back in 1978, and New Brunswick only recently joined the party in 2024!

(Fun Fact: NB was SO recent I wrote this entire blog and had to revise it when I found out New Brunswick does have legislation during my fact-checking process…)

I won’t make you google it: Alberta and Prince Edward Island have yet to enact provincial accessibility legislation. But shockingly, it’s actually not that straightforward!

Alberta has embedded accessibility considerations into their National Building Code and enacted the Office of the Advocate for Persons with Disabilities, while PEI has their Supports for Persons with Disabilities Act – but that just generally outlines what all provinces provide for disabled people anyways.

If someone from PEI can explain to me what on earth is going on there, that would be sick.

With all of that background aside, let’s get into this provincial legislation!

1978 Act to Secure Handicapped Persons in the Exercise of Their Rights with a View to Achieving Social, School, and Workplace Integration

Read It Here

• Quebec was the first province to pass disability-specific legislation, and the only province to have disability-specific legislation for over 25 years!
• This Act emphasized the importance of disabled persons’ right to be fully integrated into society, and the responsibility of government departments and agencies to ensure this integration. 
• The Act is based on principles of wholeness, autonomy, living in the community, built environment accessibility, ensuring the availability of relevant and appropriate resources, and a decent quality of life.
• The Act created an Office to ensure coordination and implementation, with a board majority-led by persons with disabilities.
• The Act requires the provincial government to ensure policies and programs are accessible and disability inclusive, that school, social, and workplace environments are fully integrated, that individualized services are appropriate and available,  and that accessibility standards are developed and enforced.

Carly Commentary: While I think it’s a shame more Canadians can’t speak French and enjoy everything Quebec has to offer – it keeps this province as a hidden legislative gem. Quebec is the only province to have legislation revolving around disability instead of accessibility, and did this only one year after the Canadian Human Rights Act was introduced!

Also, don’t dunk on them for using ‘handicap’ – there’s really no great French alternatives for disability. But for my bilingual friends, personnes en situation de handicap is the more appropriate term these days – which is basically just “person experiencing disability” for the anglophones out there.

2005 Accessibility for Ontarians with Disabilities Act

Read It Here

• The AODA aims to develop, implement, and enforce accessibility standards across Ontario in the areas of goods and services, accommodation, employment, facilities, and buildings to promote the inclusion of persons with disabilities.
• The Act facilitated the creation of legally-enforceable standards for information and communications, employment, transportation, customer service, and the design of public spaces.
• The Act has been criticized for its emphasis on accessibility over disability, for its lack of substantive content, and for the general lack of enforcement of the related accessibility standards. 
• While the Act promised a barrier-free Ontario by 2025 – Ontarians report persistent and pervasive barriers around employment, businesses, education, transportation, and healthcare.

Carly Commentary: Boo! Tomato, tomato! Jokes aside, this is the perfect example of an accessibility law with no “teeth” – aka enforcement measures. The province has essentially decided not to enforce any regulations except for making most of us take their poorly developed Customer Service training – and as someone living in Ontario, I can report we did NOT become barrier-free by 2025. I’d be shocked if we can beat the (much more catchy) federal goal of barrier-free by 2040 at this rate.

2013 Accessibility for Manitobans Act

Read It Here

• The third province to introduce provincial accessibility legislation, and the first to explicitly incorporate the CRPD into provincial law, Manitoba enacted its Accessibility Act in 2013.
• The Act is based on principles of barrier-free access, equality in opportunity and outcome, universal design, and systemic responsibility to prevent and remove barriers. 
• The Act creates a Minister for Accessibility, an Accessibility Advisory Council, and a body establishing accessibility standards that apply to the public and private sectors.
• The Act successfully facilitated the publication of standards covering customer service, employment, information and communication, transportation, and the design of outdoor public spaces.
• The Act has been celebrated for its use of clear timelines, the application of standards to the private sector, and consistent collaboration and consultation with the disability community.

Carly Commentary: I think I might actually be Manitoba’s #1 fan because of their accessibility legislation and disability community. I have lost track of how many times I point to Manitoba as a legislative best practice, and their Accessibility Office is a dream to work with! I’ve actually done two speaking engagements in this province – which, population wise, is totally hitting above its weight.

2017 Act Respecting Accessibility in Nova Scotia

Read It Here

• Nova Scotia’s Accessibility Act aims to improve accessibility through the implementation of accessibility standards, and ensure the inclusion of persons with disabilities in this process.
• The Act creates a Minister responsible for accessibility, an Accessibility Directorate, and a majority-disabled Accessibility Advisory Board mandated to coordinate the province in improving accessibility and addressing emerging issues.
• The Act veers towards a more minimal approach to disability areas, including the delivery and receipt of goods and services, information and communication, employment, education, the built environment, and public transportation and transportation infrastructure – though this would be the first mention specifically of public transit.
• The preamble is particularly impressive given the explicit admission that persons with disabilities disproportionately experience poverty, and that attitudinal and environmental barriers prevent full and equal participation in society. This makes the lack of guiding principles particularly unfortunate. 

Carly Commentary: I give this legislation one “womp, womp.” Don’t get me wrong, I LOVE Nova Scotia – Cape Breton is literally my home away from home, and the home of Canadian folk artist and arthritic icon Maud Lewis! In fact, Nova Scotia is the most disabled province at 37.9% (source)

Which brings me to my real question – what the hell are they doing in Nova Scotia??? This legislation was very bare bones, and pretty much copy and pasted from Ontario. For our most disabled province, with a great culture of knowing your neighbours and helping out your community, I would expect a lot more.

I actually went back to re-review the legislation to see if I could squeeze out any more bullet points around notable features. I found that the preamble was fairly decent in terms of a progressive understanding of disability – but this only made the lack of guiding principles even more noticeable.

2021 Accessible British Columbia Act

Read It Here

• BC’s Accessibility Act identifies a Minister responsible for publishing an annual accessibility report detailing provincial accessibility efforts and appointing an individual to conduct independent reviews, and requires the provincial government to establish a majority-disabled accessibility committee.
• The Act also empowers the Lieutenant Governor in Council to create regulations around identifying, removing, and preventing barriers in the areas of employment, service delivery, the built environment, information and communication, transportation, health, education, and procurement. 
• The Act promotes principles of inclusion, adaptability, diversity, collaboration, self-determination, and universal design in pursuing greater accessibility.
• British Columbia was the first provincial Act to provincially recognizes American Sign Language and Indigenous sign languages, and the only province that explicitly requires the consultation of Indigenous peoples in accessibility standards development.

Commentary: BC was the first province to officially recognize sign languages, AND still the only province to meaningfully ensure consultation with Indigenous persons and nations directly in the legislation. Now, BC does have a very organized Indigenous population and a number of self-governance treaties they’re legally bound to recognize, but you would expect more provinces (looking directly at you again, Nova Scotia) to follow suit here.

2021 Newfoundland and Labrador Accessibility Act

Read It Here

• Newfoundland and Labrador’s Act aims to improve accessibility by preventing, identifying, and removing barriers to facilitate persons with disabilities’ full participation and inclusion in society.
• Similar to BC, this Act also requires accessibility standards addressing the built environment, information and communication, procurement, education, health, employment, and the design and delivery of programs and services. Notably, Newfoundland and Labrador include accommodations as its own clause, but exclude transportation. 
• Newfoundland and Labrador also recognize American Sign Language and Indigenous sign languages as official languages for the deaf community.
• The Act tasks the designated Minister with raising awareness around barriers, promoting the identification, prevention and removal of barriers, overseeing the development and implementation of accessibility standards, and ensuring appropriate consultations. 
• The Act creates a majority-disabled Accessibility Standards Advisory Board, a Disability Policy Office, and standard development committees.

Carly Commentary: At this point in the analysis, I kept convincing myself I was just re-reading the Accessible Canada Act. Mandating a minister, creating a board, publishing standards – all great stuff! I just would have loved to see a better regional vibe here. You’ll notice transportation is missing from this legislation – that’s no mistake, because the terrain out there is notoriously difficult to get around, disabled or not!

2023 Accessible Saskatchewan Act

Read It Here

• The second latest province to enact accessibility legislation, Saskatchewan’s Act aims to increase accessibility through the development of accessibility standards identifying, removing, and preventing barriers in the built environment, information and communications, employment, transportation, procurement, service delivery, and service animals – making it the first province to include service animals in provincial accessibility legislation. 
• The Act designates a Minister tasked with raising awareness of barriers and promoting improved accessibility, creates the Saskatchewan Accessibility Office, and establishes a majority disability-led Accessibility Advisory Committee.
• The act bases accessibility efforts on the principles of inclusion, adaptability, diversity, collaboration, self-determination, and universal design.
• The Act recognizes American Sign Language and Indigenous sign languages as the primary languages of communication by deaf persons in Saskatchewan.
• The 2023 Act is the first to explicitly require accessibility standards to ensure the CRPD is considered during development.

Carly Commentary: Again, we’re pretty deep in the analysis and everything looks the same. But then you get a stand-out win, like Saskatchewan requiring CRPD considerations in standards, and perk up a little bit! I’m also loving the accessibility principles, but my Day One Homie Manitoba did it first.

2024 New Brunswick Accessibility Act

Read It Here

• The most recent province to enact accessibility legislation, New Brunswick takes the standard approach of mandating a minister to oversee accessibility, requiring the development of accessibility standards, and establishing an Accessibility Office.
• New Brunswick is unique, as its standards include the usual transportation, education, employment, built environment, and information and communications – but swaps out program and service design and delivery with government services, while introducing both housing and sports and recreation. 
• Instead of an official advisor or chair of a board, New Brunswick opted for a Director of Compliance and Enforcement inside of their Accessibility Office! This is an intriguing break from the usual approach, and I look forward to seeing if this changes the implantation process.
• New Brunswick requires the establishment of an Accessibility Advisory Board, but reverses the provincial trend of requiring a majority disabled board in favour of “persons with disabilities, persons who work on behalf of persons with disabilities, or members of provincial agencies or provincial branches of national agencies that work on behalf of, or represent, persons with disabilities,”
• New Brunswick also requires that accessibility standards comply with the CRPD, continuing the trend introduced by Saskatchewan!

Carly Commentary: Reading this legislation was an emotional rollercoaster. The introduction of housing and sports/recreation under accessibility areas was exciting! Then, lumping in non-disabled people working in disability was pretty disappointing and a direct reversal of a promising trend. But then, New Brunswick continued the positive trend of requiring CRPD compliance in accessibility standards! All of this to say, this is definitely a province I’ll be watching over the next few years.

Key Takeaways

As I get really nerdy in school and further studying institutional economics, I’m learning about path dependency – where your past or present actions shape future ones. For me, a critical juncture was when Canada chose to opt for accessibility-focused legislation over disability rights legislation, despite Quebec’s progressive disability-centred law from 1978, and the Americans with Disabilities Act in 1990 setting a clear precedent for impactful legislation. While I know that this legislation is actively removing accessibility barriers – I wonder how our country will look, if we achieve that barrier-free Canada by 2040 without a parallel shift in including and empowering persons with disabilities.

Another nerdy thing I noted was just how intriguing the differences in accessibility areas are between provinces! What made Nova Scotia include transportation, while Newfoundland and Labrador steered away from it (no pun intended?) Why would Newfoundland and Labrador include accommodations as a distinct area, on top of employment and education? Why has only Saskatchewan mentioned service animals, and what made New Brunswick include sports and recreation for the first time?

I am particularly impressed by the legislative requirement to ensure accessibility standards organizations and advisory committees are majority-led by disabled people. We’ve seen Accessibility Standards Canada absolutely thrive under this approach, so I’d love to think they played a key role encouraging the provinces to follow suit. However, this makes me look down on New Brunswick just a little bit more for including non-disabled people as adequate substitutes for disabled people. Luckily, they could be just the third-last province to enact legislation, so I don’t see them significantly deterring this pattern of mandated representation in the long-run.

But most importantly, overall, I was shocked by how similar the provinces’ accessibility legislation was. I mean, these bills were enacted by political parties of all different stripes. And while I would love to see disability become a non-partisan issue, this more likely suggests that governments are pursuing the bare minimum of accessibility without accompanying expansions in disability income supports, employment programs, and educational services.

Welcome to the Blogging to Berlin Series! With less than a month until I fly out to Germany for the 2025 Global Disability Summit, you can expect to see a LOT more blogs on disability rights, legislation, and monitoring in Canada!

As I gear up for grad school, this blog also marks the start of me acting on my commitment to create accessible, open-access resources on the more nerdy aspects of accessibility and disability – to help my disabled peers out there understand and claim their rights!

To get things started, I wanted to share a timeline of disability rights in Canada that I had the privilege of developing as part of my work as Communications & Partnerships Director for the National Educational Association of Disabled Students (NEADS). I have so much love for this organization and the work they do, so make sure to check them – and their incredible scholarship program – out!

While I did my best to cover key events in this timeline, disability history is changing and evolving every day! Don’t be afraid to drop a comment or shoot me an email if you’d like to see something added – and I’ll make sure to credit you 🙂

Trigger Warning: Institutionalization, Sterilization, Segregation, Murder, Medical Assistance in Dying

1800s

With widespread trust in state and church-run institutions and unchallenged ableist discrimination, disabled people are institutionalized in segregated residential settings without their consent – leading to mass human rights violations including forced sterilization, abuse, and murder.

• 1839: The British Government passes An Act to Authorize the Erection of an Asylum within its Province for the Reception of Insane and Lunatic persons
• 1850: The Provincial Lunatic Asylum is opened in Toronto, becoming the first Canadian mental institution
• 1876: The Asylum for Idiots and Feeble-Minded (later renamed the Huronia Regional Centre) is opened in Ontario – there are now 1440 unmarked graves and 571 numbered graves on this site alone

1950s

Following WWII, disabled veterans and civilians band together to demand improved disability services, mainstream inclusion of disability, and the end of institutionalization.

• 1918: War Amps is established to support returning veterans who experienced amputation as a result of battle injuries, becoming one of the first organizations for persons with disabilities
• 1928: The Alberta Government passes the Sexual Sterilization Act, which gave the Alberta Eugenics Board authority to force those living in government-run institutions into sterilization without consent or awareness, becoming the first part of the British Empire to legislate involuntary sterilization – BC would follow suit in 1933 with the Sexual Sterilization Act of British Columbia
• 1955: The Saskatchewan Association for Community Living forms and becomes the first organization to call for deinstitutionalization
• 1958: The Canadian Association for R*tarded Children (now the Canadian Association for Community Living) is formed to advocate for improved education and services for children with intellectual disabilities

1970s

Thanks to the advocacy work of growing grassroots disability organizations, the 1970s saw governments slowly introduce legislation to cement progress.

• 1974: Nova Scotia amends its Human Rights Act to prohibit discrimination against the physically disabled
• 1975: The Ontario Government creates the disabled-led Ontario Advisory Council for the Physically Handicapped
• 1976: Provincial disability groups band together to create the Coalition of Provincial Organizations of the Handicapped (COPOH) – now known as the Council of Canadians with Disabilities

• 1977: The Canadian Human Rights Act passes and prohibits discrimination on the basis of disability, amongst others, with disability defined as a previous or existing mental or physical disability, including disfigurement and drug/alcohol dependence 
• 1978: Quebec’s Act to secure handicapped persons in the exercise of their rights with a view to achieving social, school and workplace integration

1980s

Disability issues rapidly build momentum to become a significant federal priority – but legislative progress is threatened by neoliberal cuts to social services.

• 1980: COPOH protests on Parliament Hill to demand inclusion in Charter, after policymakers argued disability is “too vague” to include
• 1981: Thanks to civil society’s advocacy efforts, the Parliamentary Committee drafting the Charter unanimously agrees to include disability under Section 15
• 1981: The federal government releases The Obstacles Report – advancing 130 recommendations for improving accessibility and inclusion with emphasis on disability leadership and supporting self-help
• 1982: The Canadian Charter of Rights and Freedoms prohibits discrimination on the basis of disability
• 1985: The Canadian Human Rights Act bans discrimination on the basis of disability, and requires federally regulated employers to provide accommodations
• 1986: The Employment Equity Act comes into force to address employment barriers faced by women, visible minorities, Indigenous peoples, and persons with disabilities
• 1987: The House of Commons establishes a Standing Committee on the Status of Disabled Persons under the Mulroney Government

1990s

Under an increasingly neoliberal and globalized economy, the Federal Government introduces several domestic initiatives to mainstream disability.

• 1991: The federal government publishes the National Strategy for the Integration of Persons with Disabilities, a 5-year plan to integrate disabled people into society and the economy
• 1996: The federal government appoints a Federal Task Force on Disability Issues
• 1997: The federal government establishes the Opportunities Fund for Persons with Disabilities to their (self) employment
• 1998: The federal government publishes In Unison: A Canadian Approach to Disability Issues that largely focuses on disability supports, employment, and income

2000s

The disability rights landscape explodes under landmark Supreme Court rulings, the introduction of further accessibility legislation, and the signing of the Convention on the Rights of Persons with Disabilities – but fades from federal agendas.

• 2001: The federal Office for Disability Issues is established to coordinate policies and programs across federal jurisdiction
• 2001: The Ontarians with Disabilities Act passes and requires the provincial government eliminate barriers, despite limited enforcement measures and scope
• 2001: The Supreme Court hears R v Latimer, ruling that Latimer’s murder of his disabled daughter Tracy is not justified
• 2003: The Supreme Court of Canada hears Starson v Swayze and rules that Starson had the right to refuse psychiatric medication because the Consent and Capacity board had insufficient evidence
• 2005: The Accessibility for Ontarians with Disabilities Act comes into force to develop accessibility standards around goods, services, employment, and the built environment
• 2006: The federal government releases the Federal Disability Report and announces plans to create a National Disability Act
• 2007: Canada signs the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD)
• 2007: The Supreme Court of Canada hears CCD v Via Rail, siding with the Council of Canadians with Disabilities
• 2008: The Canadian Transportation Agency ordered Air Canada, Air Canada Jazz and WestJet to adopt a 1P1F policy for persons with severe disabilities
• 2009: The final three institutions for persons with intellectual disabilities in Ontario are closed, including the Huronia Regional Centre

2010s

The CRPD renews efforts towards mainstreaming disability, and more provinces join Quebec and Ontario in enacting accessibility legislation!

• 2010: Canada ratifies the Convention on the Rights of Persons with Disabilities (CRPD) as it enters into force
• 2012: A landmark Supreme Court of Canada ruling says mentally disabled adults can give reliable court testimony
• 2013: Manitoba passes the Accessibility for Manitobans Act, and later implements a series of accessibility regulations around employment, transportation, outdoor spaces, and more
• 2015: The Supreme Court of Canada rules in Carter v Canada that the Criminal Code must be amended to decriminalize physician-assisted suicide for persons with disabilities, known as Medical Assistance in Dying (MAID)
• 2016: Bill-C14: An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) comes into force, exempting physicians providing MAID from criminal prosecution
• 2017: Nova Scotia passes An Act Respecting Accessibility in Nova Scotia
• 2018: CBC’s “Deadly Force” report documents all known police executions in Canada from 2000-2017, identifying that over 70% of those killed had mental health and/or substance use issues
• 2019: The Accessible Canada Act passes, introducing requirements for federally-regulated bodies
• 2019: The Superior Court of Québec rules in Truchon V Canada that the eligibility criteria of “reasonable foreseeability of natural death” was unconstitutional and required wider eligibility for all persons with disabilities

2020s

Despite significant setbacks from the COVID-19 pandemic, provinces continued to enact legislation as the federal government continues mainstreaming efforts.

• 2020: Bill C-7: An Act to amend the Criminal Code (medical assistance in dying) is introduced in Parliament in response to the 2019 Quebec Court ruling
• 2021: British Columbia passes the Accessible British Columbia Act
• 2021: Newfoundland and Labrador pass An Act Respecting Accessibility in the Province
• 2022: The Disability Inclusion Action Plan is published, emphasizing finance, employment, and communities
• 2023: Saskatchewan passes The Accessible Saskatchewan Act
• 2024: The Canada Disability Benefit Act enters into force, requiring the government to begin delivering this federal income top-up within 12 months.
• 2025: The Canada Disability Benefit Regulations are published, detailing a maximum amount of $200/month and eligibility criteria requiring a burdensome Disability Tax Certificate.

Sources

• The “Unfit” in Canada: A History of Disability Rights and Justice, Shanthiya Baheerathan and the DJNO Youth Action Council (2019) (Link)
• People with Disabilities Significant Historical Events, Inclusion Canada (Link)
• Disability Rights Movement in Canada, The Canadian Encyclopedia (2015) (Link)
• Council of Canadians with Disabilities: 48 years strong and “On The Road to 50 Years”, Council of Canadians with Disabilities (2011) (Link)
• Accessibility legislation, standards, and regulations in Canada (2024), BDO Canada (Link)
• “Legislative Background: Bill C-7: Government of Canada’s Legislative Response to the Superior Court of Québec Truchon Decision” Justice Canada, 2021 (Link)
• “Medical assistance in dying: Legislation in Canada” Health Canada, 2024 (Link)

Chronic illnesses can be so diverse, complex, and confusing that it should be difficult to find a universal experience.

However, thanks to the notorious phrase “have you tried yoga?” and its seemingly infinite variations, we as chronically ill people have all shared the universal experience of receiving completely unsolicited advice on how to “cure” our illnesses. 

These seemingly well-intentioned suggestions can come from complete strangers at the grocery store, very loose acquaintances at school or work, or even from your closest friends and family.

No matter who they are, or where they came from, the second they know about your chronic illness they immediately transform into the Absolute Expert Authority on exactly what you need to do to cure your chronic illness.

Forget med school, white coats, and stethoscopes – the real experts are speaking.

Their qualifications? Don’t worry about it!

Regardless of who they are and what they know about you, they come armed with one hyper-specific, magic bullet remedy that is guaranteed to Completely Fix And Cure You If You Just Commit And Do It Right. 

They see the Random Woman With Unexplainable Knee Brace, That Kid With Arthritis Who Is Definitely Too Young To Have It, and That Weird Guy Who Walks Funny and spring into action with their groundbreaking, medically proven, undeniably effective, sure to work cures of turmeric, turmeric and black pepper, swimming, yoga, Pilates, mindfulness, and losing weight. 

How grateful we must be, how cured we must be, how Not Disabled we must all be by now, thanks to these well-intentioned saviors. Right?

Wrong!

Regardless of the reasoning and intentions behind offering unsolicited advice, we as a society need to knock it off for four main reasons:

One: We do not know these people!

Two: We do not know their illnesses!

Three: We do not know their lives!

And most importantly, Four: We need to stop trying to cure them!

As I have humored countless recommendations, humor me as I explore these four reasons a little further. 

(Let’s be so real with ourselves, if you’re reading this you probably already know better than to offer unsolicited advice to anyone – but let’s just give it a go anyways!)

Reason #1: You Do Not Know This Person

This reason goes out to all the strangers who insist they Know What Is Best For Us – “Us” being everyone, or just specifically you (and no, I can’t tell which one is worse). 

Innocent, well-intentioned, sympathetic strangers – please ask yourself, why do you feel qualified to tell someone else how to live their life? How to manage their illness? How to cope with pain?

If you really reflect on why you’re offering unsolicited advice to the chronically ill, you most likely won’t find the sympathy you thought you had – you’ll just find pity.

There is an incredibly long and continuing history of non-disabled and non-chronically ill people insisting that they are the experts on disability and chronic illness.

And while this largely applies to doctors and service providers, you’ve been swept up in it – most likely, without even recognizing it!

Can you imagine how patronizing it is to be told by someone without lived experience how we are supposed to act, think, and feel? 

Can you imagine how belittling it is, when someone believes you don’t know what is best for yourself? 

And can you imagine how exhausting it is, kindly pretending to accept your advice that we know isn’t going to work for us?

(Do me a favour, and try to fight that urge to ask “but how do you know it isn’t going to work?”)

Yes, we appreciate you want to help us. But ask yourself why you believe we need to be helped – why you believe there is something wrong about us. 

Reason #2: You Do Not Know Their Illness

This reason is for those among us who have been possessed by the Spirit of Medical Excellence and Supreme Knowledge the second they saw someone existing outside of what they believe to be the norm – despite a complete lack of medical qualifications. 

Chronic illness is complex illness.

And because it can be so complex and confusing, some people are desperate to whittle it down into something simple, easy to understand – and curable.

And I really do believe people choose to oversimplify chronic illness because they’re scared, because chronic illness is inherently not easily understandable.

And I think this is something that we as chronically ill people could do better to speak more on. To share that we’re scared and confused, too.

That it’s scary and confusing to not understand what’s going on in your own body, and to not know what to do to fix it.

That it is weird that our conditions can come and go, flare and enter remission, and look different from day to day.

That we don’t actually fully understand what’s going on ourselves.

However, if we, the people with the chronic illnesses, don’t know what’s going on – those without them definitely don’t know either. 

Now, if the emotional appeal didn’t get you – let me try with two examples.

The first is for those who insist they understand the complexities of chronic illness, and are still qualified to provide advice on cures, treatments, and symptom management:

Before I even reached age 18, I had microdosed chemotherapy, done a month’s worth of steroids, and regularly injected myself with white blood cells taken from chinese hamsters’ ovaries.

Even with advanced scientific breakthroughs, medical professionals, and intense treatments – I still had arthritis. The experts could not – and still have not – come up with a cure.

If the experts can’t cure me, you definitely can’t cure me either.

If chemo, steroids, and biologics didn’t scratch me – turmeric isn’t going to do what they couldn’t. If it could, Big Pharma would have already monopolized it. 

For those who insist chronic illness is fairly straightforward, easy to understand, and even easier to treat: 

For six weeks, seemingly out of nowhere, I was getting violently ill nearly every day. I couldn’t keep food down. I was ditching work and school because I felt so sick.

I became convinced I had developed a new, bonus inflammatory disease.

Do you know it actually was? (No, you don’t. Stop that.) Sun-dried tomatoes.

I had developed an intolerance to sun-dried tomatoes because of my fibromyalgia meds – which are literally just low-dose anti-depressants. Microdosing anti-depressants made me intolerant to sun-dried tomatoes. 

Sure, chronic illness can appear simple.

And I would say sun-dried tomatoes are a fairly simple food.

But we are not working in a simple, straightforward environment.

Simple things become very complicated, very quickly.

If you haven’t caught on yet, there is a LOT going on with my body. 

It’s like a moving jigsaw puzzle, where the pieces are constantly changing shape. And it’s also in 3D.

And you’re putting it together in zero gravity.

And you’re probably in a murky lake filled with piranhas.

And sharks. 

But if you just want to see it as a 24-piece puzzle, go for it!

Don’t let the piranhas bite you on the way out.

Or the sun-dried tomatoes. 

Reason #3: You Do Not Know Their Lives

This reason is for those who ambitiously aim to make the world in their image, who truly believe that everyone could be perfect if only they acted exactly like them. 

These people often take great care of themselves and (dare I say, obnoxiously) reap the benefits, leading to an unwavering belief in Their Specific Cure That Will Help Everyone Ever.

They often live by an “if I can do it, you can do it” attitude – and can even come from our own chronically ill ranks.

A devastating betrayal (not the doing well part, the going from receiving to giving unsolicited advice.)

This reason is most frequently invoked by unsolicited advice to exercise – yoga, swimming, Pilates, cardio, you name it.

And while these activities can be helpful, The Proponents aggressively push a one-size fits all model that will shame you if you don’t literally get with the program. 

And getting with this program can be incredibly hard, for so many different reasons.

(The Proponent’s excuse alarm is probably going off really hard right now. Breathe. Especially if you’re trying to make me do yoga.)

As chronically ill people, so much of our time is already consumed with the invisible administrative work of having a disability (appointments, para-transit, navigating support programs) – and a lot of us are working multiple part-time, unpredictable jobs to make ends meet.

This leaves very little time left to specifically get exercise in.

Most of us also deal with chronic pain and fatigue that absorbs so much of our energy! 

Spoon theory literally exists just to explain how excessively exhausting “normal” tasks are for us – for example, while taking a shower is one spoon (unit of energy) for a “regular” person, it could be five spoons (units of energy) for a chronically ill person!

On top of this increased need for spoons, we often start with less spoons than non-chronically ill people.

(For some reason the spoons in a fishbowl, so I’m gonna leave the metaphor here.)

The point is, so many of us don’t even have the time or energy for our daily tasks – let alone for an additional, energy-intensive task like exercise!

Here, the Proponent will either get very angry with you, or start clamoring to explain how exercise will reduce pain and increase energy in the long run. 

Proponent, you have a point. (Got you there, huh?)

But unfortunately, many chronically ill people genuinely do not have the time and energy to immediately spare, even when they understand exercise could help them in the long-term. 

There’s a great example about winter boots when explaining the economics of poverty that might help break through to the Proponents among us:

When you’re at a low, fixed income, you have to buy the cheap winter boots knowing it only lasts one winter – because that’s all you can afford. 

(No Proponent, you can’t take out a loan! The bank doesn’t care about you!) 

But over time, you end up spending so much more on cheap boots every year, than if you just bought the well-made expensive ones in the first place. 

But that’s the economics of poverty – you end up paying more in the long-run, because you can’t afford large, up-front costs.

Chronic fatigue is energy poverty. The good quality expensive boots are exercise. Hopefully you’re starting to get the picture. 

Reason #4: You Should Not Want to Eradicate Disability

The most important reason not to give unsolicited advice to chronically ill people, is because you shouldn’t want to cure them.

Most people know not to offer unsolicited advice to strangers, but I think a lot of us struggle with this idea that we shouldn’t want to cure those in pain.

That it’s okay people are in pain. 

And it’s something I struggled with personally for a long time.

Do I want my joint pain and chronic fatigue to go away? Obviously!

But, that’s just not going to happen. Womp womp.

I have made my peace with being chronically ill, with being disabled.

My favourite definition of disability sees it as a naturally occurring feature of human diversity.

Disability is as natural as the way some animals walk on four paws while others walk on two. 

And when I see disability in that greater context, I understand that there is nothing wrong with me.

That I don’t need to be cured, or fixed – to be okay.

That I, like everyone else – disabled or not – has inherent value and worth.

We also need to be incredibly mindful of why we put so much emphasis on curing chronic illness, rather than managing it.

And when we choose to advocate for a cure, we need to be incredibly mindful that we are not contributing to possible eugenic practices such as gene editing and genetic testing designed to eliminate disability. 

But that is a very big blog for another day!

Speed Round

Alright. If the four reasons didn’t get through to you and you’re still just itching to cure me – let me entertain you. 

Have you tried turmeric?

Yes! I love turmeric and have incorporated it into some delicious plant-based dishes. Great spice, but didn’t do anything for my arthritis.

Well, that’s because you didn’t try it with black pepper.

What is this, amateur hour? Have you ever cooked anything in your life? I promise you, there was plenty of black pepper. I still have joint pain though.

Fine – but have you eliminated inflammatory foods?

With an eating disorder history? You really want to encourage good elimination? Are you sure about that? Because it didn’t go too well last time.

Okay, okay. No more food recommendations. But what about –

Yoga?

How did you know I was going to say yoga?

Lucky guess. And experience.

You will be pleased to know that I love yoga – especially for waking up and soothing stiff joints. I’ve been doing yoga for years, I’m very happy with my form and practice – and I still have arthritis.

Well, what about Pilates?

Girl, that’s literally just yoga with more breathwork and strength building. Are you running out of ideas?

A little bit. What about swimming, isn’t that supposed to help?

Swimming is definitely an arthritis friendly exercise given its low joint impact – it won’t cure inflammation or stop joint pain though.

God! It’s like you’re not even trying to get better! You dismiss all the cures!

I’ve incorporated turmeric, supplements, strength-training, cardio, yoga, AND pilates into my life. I’ve just done it in a healthy, balanced way that suits my lifestyle and illness – and in a way that doesn’t align with your completely unrealistic expectations that one activity alone done at an extreme and excessive intensity will outright cure me.

Why are you so mad? I’m literally just trying to help you!

But why are you trying to help? Especially when I didn’t ask for it?

I can appreciate you wanting the best for me, but I need you to trust that I know what is best for myself.

And I know that there is nothing wrong with me – just with you, and how you choose to view disability.

Now, more than ever, disabled youth are reaching out to me for tips on how to get more involved in advocacy work and public speaking – which thankfully, hopefully, means I’m probably doing my job right.

Disabled youth are looking for places to publish potential blog posts, asking for insights on how to book public speaking opportunities, bringing their feedback and perspectives to local organizations – and above all, getting more involved than ever in the disability rights movement. 

I’ve said it before and I’ll say it again: but my overarching goal in all of the work I do, is to not be the only one doing it (which thankfully and obviously I am not, but you get my point). The whole point of being an advocate is to not only represent your community, but to create opportunities and space for your community to represent themselves. To acknowledge that your voice is not the only voice, that your perspective is not the only perspective, and that you are not the only disabled youth who has ever existed. 

To be an advocate is to use your work, privilege, and platform to help others do exactly what you’re doing – so today’s blog is all about helping other disabled youth launch their advocacy journey, build their platform, and find new opportunities! 

I’ll start by sharing my own experience getting started with disability advocacy, going from literally looking up to my twin sister as an ambassador for the Arthritis Society as I struggled self-advocating for my own high school accommodations to running a full disability advocacy business today! Then, I’ll offer some tips for getting started, finding your message, building your platform, and booking gigs. 

With all that in mind, I’m very excited to introduce two new initiatives designed to share my platform with other disabled youth, and have included some resources at the end to help you create your own bio, take your own headshots, and even come up with a presentation proposal and quote for when you book your first gig!

This is gonna be a long blog. I took two hours to draft it all before even actually writing it. My body is in shambles, my fingers are not cooperating, and my hips hate my very very much – and I’m just starting to actually write all of this right now. 

Completely worth it. Let’s begin.

My Experience

My advocacy career started the same way as so many others: by being inspired by someone else. 

For me, that was and still is my twin Makayla, who was an ambassador for the Arthritis Society before I was even diagnosed myself! I remember standing together with my family and friends at the annual charity walk, watching on as Makayla spoke from the stands to the crowd about her lived experience with arthritis. 

I hate to use the I word, but she was quite inspiring here.

I remember feeling so proud (obviously, who wouldn’t be?), but also so seen, so heard, so represented – my friends didn’t know it yet, but I had just been diagnosed with arthritis too. While I didn’t imagine myself being up there that day, it was the first time I truly understood just how important disabled youth representation is.

As I began growing into my identity as a 16-year-old with arthritis, I soon realized that while I never had a hard time sticking up for others, it felt impossible sticking up for myself. I really struggled asking for accommodations in high school, feeling vulnerable and embraced with all the attention on me, what I needed, and what my limits were. But as I struggled to advocate for myself, I quickly realized I wasn’t the only one in this situation – at that time, many youth were and still are struggling with undiagnosed disabilities, especially mental health conditions. 

This was my turning point.

I realized that by advocating for myself, I could also advocate for others – creating change and making sure the next disabled student to go through those doors would have, at the very least, a slightly easier time than me.

By embracing a community-based advocacy approach and taking the focus off of me as an individual in favour of pointing out inaccessible systems and processes, I was also able to discover that by approaching advocacy as a positive and educational opportunity for all those involved, I could get more response and cooperation.

This experience I had 6 years ago sticks with me today in more ways than one: while I had to partially drop out of school in favour of itinerant education as prednisone (steroid), and then methotrexate (basically microdosed chemo) completely ravaged my body, I was able to find an accommodation allowing me to partially stay in school. 

At the lowest point of my disability to this day, I was able to find new meaning and purpose in advocacy – I learned how to find silver linings, positives, opportunities for change.

Yes, the negatives are there. Believe me, I know. And if others don’t know, I will tell them. But dwelling entirely on the negative has never gotten anyone very far.

(To learn more about my experiences with self-advocacy, check out my blog Self-Advocacy: Why Is It So Hard?)

So, that’s how I got started. Not by some big break, or a major event, or being scouted by some agency – it started by being inspired by someone who spoke to my lived experience, who made me feel seen and heard when I needed it the most. From there, I was able to find a voice of my own – even if it trembled, even if my throat closed up, even if I cried – I was going to be heard.

Building A Platform

Once I started to find my voice as a disability advocate, I couldn’t get enough – or, more likely, I just couldn’t stop. Once you start self-advocating and public speaking, it only gets easier – which means today could very well be the hardest it will ever be.

With so much I wanted to say, I knew I needed a platform – while one-on-one conversations are so important, having the same talks over and over was getting a little repetitive. So, like any Gen Z out there, I did what I do best: used social media!

While social media can do a lot of harm (contributing to body image issues, misinformation, performative activism, etc), it has allowed our generation to access more information and learn from all kinds of people we might have never met in real life. 

I started by sharing infographics I found from the online chronic illness community, which were all well received. But then, I shared @Pacing.Pixie’s Cycle of Inaccessibility and found more engagement than ever – people really began to understand how pervasive inaccessibility is, and how excluded disabled people are from our communities. 

With so many questions and comments and perspectives coming in through Instagram DM, I realized it would be a whole lot more effective to answer common questions on my story. 

One major upside of chronic fatigue is that I love saving energy however I can.

And that was that. Once I started sharing my personal thoughts and answering common questions, instead of just sharing others’ ideas, things completely took off.

I was able to share educational content explaining concepts better than I could, I could give updates on medical conditions and avoid awkward one-on-one conversations, I could host anonymous Q&As, and even call out ableist practices within my community.

Being an advocate is all about community: representing your own, working with others, and making all communities better for everyone. You need people to listen, to care, to support you – and you need to listen to, care for, and support your own community in all of this!

All this to say, without my community’s initial and continued support, I would have never gotten to where I am today. To ignore that would hide the most important secret to successful advocacy work.

From this community-based social media advocacy work almost entirely through Instagram Stories, I was able to book my first few gigs! 

My first ever paid gig was through my student organization during my first year at uOttawa for our annual International Development Week conference, where the organizer reached out specifically because she had seen those Instagram stories. 

While I was nervous, as I had no prior professional experience, I knew my lived experience was undeniable – and that gave me, and still gives me, the confidence I need to take these opportunities.

I then booked an Instagram Live event with the Canadian Arthritis Patient Alliance and Take A Pain Check (which you can watch here) on self-advocacy also through my social media advocacy work. (The fact that it was geared towards juvenile idiopathic arthritis also didn’t hurt…) This event also featured Anna Samson, and while I’ve never met them in-person I’ve been able to learn so much from them through their own online advocacy work!

I could go through the rest of my public speaking here but that feels pretty redundant, feel free to check out my list of past engagements here.

Here Comes The Blog

As my social media advocacy became more frequent and I started having more and more to say, I knew I needed a new platform – one with a greater word count, that stays up longer than 24 hours.

Cue this blog.

I started this blog in March 2022, which is somehow both already 2 years ago and only 2 years ago. 

Thanks to some elementary school digital literacy classes (does anyone else remember those??) and some minor work at my beloved NEADS day job maintaining disabilityawards.ca, I had some very basic experience with wordpress and made the terrible decision to make a custom wordpress blog from scratch.

Word to the wise: use. the. default. templates.

Besides finding a new platform, this was a big milestone in my career for another reason: it was the first time I consciously decided to pursue this as a business! I paid $200 for an annual wordpress pro subscription so that my website would actually show up on search engines, and another $20 for a custom domain name.

I promised myself that I would either make $200 through disability advocacy gigs in the next 12 months, or I would go back to the free version and keep this as solely a creative outlet.

I am very happy to announce I am still on wordpress pro.

So, the blog became the blog – and I truly just published whatever I wanted, whenever I wanted. No content schedule, no big plan, no guidelines or consistent format, and basically no idea what I was doing. But like most advocacy things, I just wrote from the heart and from my lived experience.

Two years later and I’m blogging the exact same way: I might have an idea I want to write about floating around in the back of my head, but more times than not I am practically possessed by a blog I need to write ASAP. Shoutout to my day job for flexible hours…

I’ve written for hours on end, right now included. I’ve hunched over in bed with a pillow on my lap holding my computer as it rocks back and forth under my enthusiastic typing. I’ve consistently demonstrated fantastic core strength balancing my laptop between my knees and my stomach, laptop precariously balanced as my hands grow stiffer and the pain races me to the finish line.

Like I said, with advocacy, one I start I just can’t stop.

And it’s literally happening right now! While I knew I wanted to write this blog for a very long time, after 3 disabled youth reached out to me for tips on how to get more involved in advocacy work in under 12 hours, I knew it was time.

And somehow, despite no big plan and writing these blogs like I’m possessed, this blogging thing worked – all because of you guys. Because you’ve supported my instagram stories, my events, my blogs, my speaking gigs, I’ve been able to get to where I am today. 

Again, that’s the real secret to finding success as a disabled youth advocate – you find it in your community.

Fortunately, or unfortunately if you were looking for a quicker start, there’s no secret network or society of disabled youth advocates passing around speaking opportunities – if there was, I would definitely blab about it immediately.

The Snowball Effect (Or A Pyramid Scheme)

As the blog and social media following grew, I was able to grow my platform and book more gigs – to the point that I had to transform by blog to a website, and my side gig to a full disability advocacy business.

Don’t get me wrong, blogging is definitely one of my favourite advocacy things to do. It’s therapeutic, creative, freeing, unstructured – and I usually love how it stays up on my website forever for anyone to read, until it sends me into an existential spiral.

But I’ve also discovered new ways to advocate!

Keynotes and presentations help me deliver one big idea to a very specific audience. They’re time-limited and more often than not closed access, but they help me directly inspire change often in organizations well positioned to have a real impact.

Workshops are definitely a favourite – while again, they’re often time-limited and closed access, directly and authentically engaging in smaller groups to challenge misconceptions and really dive into specific concepts is so exciting and a fantastic challenge!

And of course, consultations are a short-term, often high-impact way to ensure projects are accessible and inclusive – creating almost instant change I can see immediately.

And all of this became possible specifically because I advertise these services on my website! It may seem obvious, but people have to know what you offer to take you up on it.

Cue the snowball effect!

Once you start booking gigs, publishing blogs, and growing your platform, you need to start spending more time maintaining all this work and meeting increased demand. I try to never think about any content – be it a blog, a workshop, a presentation – as a one-time thing. 

I think it would be very sad to abandon all my old blogs to die a slow death on my website, so I like to bring them back out of retirement by referencing them in new blogs and sending them along to clients. 

I do my best to include all my past speaking engagements on my about page, where people can see what organizations I’ve worked with, what kind of content I’ve put out, and even watch old events!

And, of course, I love to check in on past clients. Watching the new work they put out, checking to see if they implemented some lessons from my work, and even booking additional, follow-up gigs with them keeps the work alive and makes the advocacy work so much more sustainable.

Now this may sound like a pyramid scheme, maybe it is, but if you’re doing it right, old gigs should generate new gigs. Once you start getting exposure, building a platform, and delivering content, the hope is that people are so impressed they want to learn more.

Yeah that sounds like a pyramid scheme.

Obviously, this is just my own experience. Maybe you just want to blog! Maybe you just want to deliver presentations! Maybe you only want to speak on panels! As an advocate, it’s so important to find our own key personal message and deliver it in a way that works best for you.

Tips & Tricks

Getting Started

First, you need to reflect on your own lived experience. Try the following prompts out:

• what kind of disability/disabilities do you have?
• how have they impacted you? have they impacted you differently at work, at school, in relationships?
• do you have any intersecting identity factors that influence your experience with disability?
• what’s been your greatest challenge as a disabled person? did you find a way to solve that issue? are there barriers beyond your control preventing you from solving that issue?
• what’s been your greatest accomplishment as a disabled person? what makes you proud of your identity? 

With that in mind, start reflecting on your relationship to the disability community as a whole. Start with these questions, but know that this relationship will always be evolving alongside both you and the community!

• What do you know about the disability community? Where have you learned about disability?
• How do you fit within the disability community? How much privilege do you hold? How do you practice allyship with other disabled people?
• What misconceptions and biases do you hold? How have you challenged your internalized ableism?

Now that you’ve reflected on your own lived experience and thought about the wider community context, it’s time to develop your key message – no pressure!!

After thinking about your disability/disabilities and their impacts, the barriers you face and solutions you need, and your accomplishments – does a key message organically emerge?

No worries if not, I got your back! Give these prompts a go:

• One thing I wish non-disabled people understood is…
• I think the most important thing society needs to do to tackle ableism is…
• To become a more accessible society, we all need to…
• From my lived experience, I know that…

No worries if you’re still stuck! Key messages can feel overwhelming, but once you have yours you’re set!

Just kidding – they will most likely change over time! This is perfectly normal and reflects how our own understandings of disability and our relationship to the disability community will shift over time.

With your key message hopefully in mind, we’ll want to determine your audience and method of delivery.

To find your audience, ask yourself who needs to hear your message the most, and why:

• If you want to make others feel empowered and represented, aim for your disabled peers
• If you want to make your spaces more inclusive and accessible, aim for your local communities
• If you want to challenge misconceptions and promote disability awareness, aim for the general public
• If you want to challenge oppressive structures and systems, aim for municipal/provincial/federal governments

Then, it’s time to figure out how you’re gonna get your message to your audience.

• Blogs can feature short or long written content, and are often hosted on websites like The Mighty, WordPress, Wix, or, if you’re a disabled youth, here! I know, clickbait – scroll down to the Opportunities section to learn more
• Vlogs are audiovisual versions of blog, and can be hosted on social media platforms like TikTok or YouTube 
• Social media content itself is often short, written content with visual elements (think infographics, quotes, affirmations) – disability content does particularly great on Instagram and Twitter
• Keynotes/presentations are longer audio-visual and written content delivered in-person or online to specific groups based on a specific theme or concept
• Workshops are often more flexible content with a combination of audio, visual, and written elements designed to promote genuine engagement with specific concepts

There you go! Now, you should have a key message, audience, and delivery method in mind. Next step: building your platform.

Building Your Platform

Platforms can occur through so many formats, but we’re focusing on social media, blogs, and websites half because that’s my area of expertise, and half because my hands hurt.

For social media, you want to first decide if you’ll use your personal accounts, or if you want to create advocacy-specific ones. 

I personally have an advocacy-specific social media platform where I post my own infographics, affirmations, etc and repost to my personal account when I feel like it’s a good fit.

However, if you want to do more general advocacy not entirely related to your lived experience, advocacy-specific accounts can be a great fit!

You’ll also want to decide if you’ll focus on one social media platform or several, and how you’ll customize content for each one. For example, the content you post on Instagram probably won’t fit on Twitter.

Decide which platform aligns best with your message and audience, consider what features align with what you want to do, and don’t be afraid to change this strategy as you grow!

Next up is the beloved blog: if you specifically want to publish blogs, you really don’t need to make your own website! Host sites like The Mighty and Substack allow you to publish your work for free, and you can even submit op-eds to your local student or city paper!

If you do want a space entirely for your own work, consider free versions of sites like WordPress of Wix – and consider the default templates. (Again. Custom websites are a nightmare. Help me.)

While free version websites don’t show up in search engines, social media is a fantastic, free way to get the word out and directly link to your work.

And finally, we have websites. If you want to offer multiple services, share upcoming or past speaking engagements, and/or publish blogs, it might be worth considering going for a website.

Websites, when you give them enough effort, can be customized to reflect what you offer! For example, my site features a home page, about section, services, and the blog – pretty much sums me up, right?

There are a ton of free resources available on creating and maintaining your website, making it more accessible, and boosting its standing in search results – check those out! Because I am not an expert!

Booking Gigs

For some reason, people see public speaking as a very glamorous, easy gig. While I will not lie, it’s pretty sick travelling for work and meeting new people – it is not easy, and it is a lot of work! 

With this in mind, if you want to pursue public speaking because you feel it best suits your message and audience:

First, to book a gig you got to find a gig. Decide if you’ll apply for gigs (often at formal conferences), or if you’ll advertise your services to help clients find you.

Unfortunate behind the scenes fact: the majority of public speaking gigs are not advertised! Speakers are often found from their past engagements, websites, online searches, and informal personal networks – which is why it’s so important to have a platform to promote your work!

If a panel organizer contacts you, they’ll most likely just need your headshot and bio (resources on that at the end of this blog) and will have a set honorarium in mind.

Keynotes and workshops are a bit trickier: once contacted by the organizer, you’ll often have an initial meeting to discuss the event format, audience, conference, etc.

From there, they’ll often request a presentation proposal and quote. This is a big topic, so I just dropped a whole template under the Resources section. 

Once your proposal and quote is approved, the client should outline timelines they expect content to be delivered by – I always try to beat these by at least a week to both create a buffer in case my disabilities act up, and to over deliver on expectations. 

If you are having a hard time hitting your timelines, make sure to communicate this with your client ASAP, along with a reasonable explanation (but nothing too in depth), and a proposed new timeline.

After your panel, presentation, or workshop, make sure to send a thank you email or letter to your client – this is a great chance to share how this opportunities impacted you, any key takeaways you had, or what you hope to see from your client in the future! This is also a great chance to remind them of any other services you offer, to connect them to additional resources, or to ask for honest feedback or testimonies for your website!

Congratulations! You wrapped your first gig! Now, record how much money you made so you can report it on taxes. Then, onto the next!

Things to Keep In Mind

Like ourselves and like the disability community, your advocacy journey is always going to be growing and evolving. While I can’t cover every potential issue or shift, here’s three things I try to always keep in mind.

One: Always give credit where credit is due!

When I say “the disability community is the only marginalized group you can join at any time,” I credit Imani Barbarin. When I reference the cycle of inaccessibility, I always reference @Pacing.Pixie.

Other advocates will (or at least should) inspire your work – so own up to that and give them credit! And of course, a word of caution: while you can reference a quote or a concept, don’t go stealing their content! 

Two: Always Keep Learning

While advocates often speak from lived experience, no one exists in a bubble! 

Which is why it’s so important to learn as much as you can about disability history, the disability rights movement, the work done by disability organizations, relevant disability legislation, different disability experiences, you get it.

Disability is also a constantly evolving concept, and as both an advocate and representative of the community, you need to do your best to keep up.

Three: Take Responsibility

As advocates, we often bring new ideas, concepts, and perspectives to new audiences – and we can even be someone’s first exposure to disability!

While this can be an exciting opportunitiy, it’s also a lot of responsibility that we need to take seriously. 

It’s important to recognize your privilege, anticipate potential misunderstandings, and clarify that you as a disabled person do not represent every single disabled person on earth. 

Opportunities

More than ever, people want to hear from disabled youth on their lived experience, but are having trouble finding them. And, more disabled youth than ever want to get into advocacy work! The only issue is that we’re having a hard time connecting these two groups.

So, I am so excited to launch my Youth Disability Advocate Directory! This Directory will be hosted on CarlyFoxDisabilityAdvocacy.ca, and will feature disabled youth wanting to get more involved in advocacy work.

Any disabled, neurodivergent, chronically ill, d/Deaf youth interested in joining the directory can fill out this hyperlinked form here. Once I have your headshot, bio, contact info, and some other details, you’ll join the directory where organizations can reach out to you directly!

I’m also very hyped to announce that I’m now accepting guest blogs from disabled+ youth! 

With more disabled youth wanting to share their lived experience, opinions, and perspectives than ever, I figured I could save us all some time building and paying for custom websites by hosting them here! (Again, never make a custom website. I am haunted.)

If you’re interested in sharing a blog, please fill out this hyperlinked form here!

Resources

Bios

Summarizing your life, experience, and values in 3-5 sentences is kinda a nightmare. I think we all feel that way. Start by reading a few bios from your favourite advocates and public speakers to get a feel for wording and tone (just, you know, don’t steal them please), then give these prompts a try:

• Introduce yourself: include your full name, pronouns (if comfortable), lived experience, and main occupation (most likely a disability advocate here!)
• Share your message: expand on your lived experience and share your key message and main goals of your advocacy work
• Reference past work: Share relevant roles you’ve held at organizations, or past speaking engagements.
• Link to more info: Share your social media handles, website or blog, or links to any relevant work you want to highlight.

Headshots

While many people assume “headshots” means professional headshots taken by a photographer, you can also take your own at home at no cost! 

There are a ton of headshot types out there that reflect the work we do and the people we are, but they generally boil down to two types: professional and personal. Professional headshots generally feature you in your favourite business attire in front of a plain background, while personal headshots give audiences a better idea of your personality and work!

Regardless of the vibe you’re going for, here’s some tips:

Look how you normally look! If you don’t wear makeup, don’t wear makeup. If you don’t dress up in suits in business settings, don’t do it now! 

Find the right lighting!

Find a spot where you are facing a natural bright light source, and ensure there are no shadows.

If natural lighting is in short supply, play around with the lighting and lamps you have – just make sure the light in bright and white or warm (aka no sunset/special effect lamps.)

Fit the frame!

As a social media manager, if I receive one more headshot where the top of the head is cropped off I am going to scream. Same with selfies. Those kinds of photos are great, just not for headshots. 

Take a few headshots from the shoulders up, with a few inches between the top of your head and the end of the photo. This is especially helpful if the client wants to use cut-out graphics in their promotions.

You can also take additional headshots featuring you sitting in your favourite chair, going for a walk, or working at your computer. These help the audience see what you love to do!

Remember these aren’t modelling headshots – if someone is asking for a profile and full-body shot, run. Also give me their info so we can collectively blacklist them.

Limit distractions!

If your vibe is maximalist, eccentric, eclectic, etc – feel free to own that! However, if that is not your vibe – aim to limit distractions.

Limit environmental distractions by picking a blank, solid background, or using settings that focus on your face and slightly (slightly!!!) blur the background

Limit attire distractions by focusing on one accent piece – this can be fun earrings, a necklace, a headband, a tie, you name it – but layering a chunky necklace with dangly earrings and a big hat will distract from your face and your vibe. 

(I feel like a mean magazine geared towards middle aged women, I am so sorry. Just stay true to you and don’t try to overcompensate!)

Provide options!

As both a public speaker and someone who promotes events for a living, I make sure to provide options when submitting headshots. I like to provide one inside headshot and one outdoors headshot, with one shoulders-up option and one in-action option. (Try to limit it to three headshots max!)

It’s also a great touch to include headshot alt text. For clients who are new to accessibility, this is a fun learning opportunity for them. For clients who normally use alt text, this relieves their communications person of having to describe you – which can be super awkward, I will not lie!

But for the love of god – do not send in black and white headshots. You can certainly offer a black and white option, but more often than not your client does not want a black and white option. 

You are not a mime. Unless you are, then go for it.

I will say that once you are making steady income from advocacy gigs (we are manifesting,) it is definitely worth investing in professional photos. Like any business, we have expenses and can reinvest our profits to promote future opportunities! (There’s the pyramid scheme again…)

Proposals

• Title of Presentation: Come up with something short and catchy that reflects what audiences can expect from your presentation
• About the Presentation: Include information on the length of the presentation, the format of delivery (in-person vs online, slides vs no slides), the main topic you want to explore, learning objectives, and intended outcomes.
• Presentation Outline: Use bullet points to indicate the main sections of your presentation, and how each section breaks down. Including the estimated time of each section also helps give your client an idea of what concepts will be emphasized most.
• Speaker Bio: Including your biography at the end of a proposal is a super helpful and considerate way to ensure your client has all the information they need in one place, and that, if the proposal is circulated internally, all decision makers have all the information they need.

Quotes

If you’re asked to prepare a quote, don’t be afraid to ask your client about the relevant information needed to create an estimate reflective of what you’re expected to deliver! This saves everyone time, and ensures both you and the client are getting what you need out of this experience.

It’s also super helpful to ask about the budget they’re working with specifically for this event, the budget of past events similar to this, and the average amount paid to past speakers. You can fit these questions in when asking about past events sponsored by the client, including what topics have been discussed and who has spoken previously!

Before you check out some potential examples of what you can include in a quote, just remember that every advocate and opportunity is different – quotes are customized for a reason!

Hourly Labour Rate x Hours Needed: First, determine how many hours you will need to work to create and rehearse the requested content. Then, determine your hourly labour rate based on your past experience, comparable wages at other engagements, and market averages (which you can find on linkedin, glassdoor, or by talking to other advocates!)

Audience Charge: The audience charge is based on the number of attendees, how long the content will be available for, and if the audience is closed or public.

Organizational Charge: The organizational charge aims to reflect the context you’re expected to work in. For example, I charge more for private companies with little experience around disability inclusion compared to community organizations working in the EDI field, as I know there will be more risk for difficult and uncomfortable situations.

Travel Charge: If you’re expected to travel for an engagement, the client should cover travel and accommodations if necessary. Decide with them if this should be booked by you and reflected in the total quote, booked by you and reimbursed separately, or booked for you by the client and excluded from the quote. You can also charge an hourly travel rate, as this is mandatory time allotted towards the presentation of a product!

Social Media Fee: If your client plans to use your content, image, or name in social media, adding a social media fee can capture any risks related to giving up control over complete ownership, and to associating with external organizations.

Video Content Fee: If your content, image, or name is being used to create additional content, or if your content is being published online for public access, this fee captures the benefits captured by the client, and your opportunity cost.

In-Person Presentation Fee: In-person environments offer unique benefits, but also offer risks – especially for immunosuppressed people, women, and visual minorities. It can also worsen physical and mental conditions – don’t be afraid to include these factors in the quote!

Emotional Labour Fee: This is honestly my best received fee! While labour rates, audience/organization charges, and additional fees may capture the required labour for this engagement, it often does not capture the emotional labour we put into work inherently connected to our personal identities. So, the emotional labour fee essentially adds a premium to traditional public speaking fees given our lived experience.

Blogs

• Insider Activism and Emotional Labour: Is Carly Fox a Regular Human Person
• Meeting the Non-Disabled Gaze
• Consultations 101
• You-th Oughta Know: The Importance of Youth in Social Movements and Decision Making Processes
• Self-Advocacy: Why Is It So Hard?