Carly Fox, Author at Carly Fox Disability Advocacy

“Differently Abled”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disabled, disabled, disabled.

Self Care or Survival

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mental Hell-th: Bringing Back My Mental Illness Advocacy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oppression Olympics: Gold Medal Match – Mental Illness v. Physical Disability

“We need to make getting mental illness accommodations as easy as getting physical disability accommodations”

The first time I heard this, I was at a roundtable consultation and was in complete shock. I had never heard this before, and immediately saw it as a divisive and negative rhetoric pitting physical disabilities against mental illnesses.

The second time I heard this, I was providing strategic advice at a consultation. My face immediately hinted at my disbelief (as it always does) and the facilitator asked me to speak on it – which I did, respectfully and hesitantly.

The third time I heard this, I was a participant at the Global Youth Disability Summit. When I shared how this was a harmful rhetoric, a non-disabled person tried to tell me that my interpretation, as a disabled person, of what the speaker said was wrong. I replied “I maintain my position, my interpretation, and my lived experience, but thank you for sharing your perspective!”

This comment is becoming more and more common as disability rights begin to enter conversations of equity and inclusion and the mental health crisis continues to rage on. While both of these issues deserve to be centred in mainstream discussions, the issue is that it is pushing us in the wrong direction. This comment implies that physical disabilities are easy to accommodate, and that mental health and physical disabilities are two completely separate experiences. As a disabled, mentally ill person – I believe this could not be more wrong.

Reality Check

Simply put, it is hell to get accommodations for physical disabilities.

First, we have to receive a formal medical diagnosis – a significant barrier to those facing systemic oppression on the basis of race, gender, sexual orientation, class, you name it!

Then, we need to get our physician(s) to sign off on paperwork requesting accommodations – and when you only see your specialist(s) every few months, your accommodations can be severely delayed.

After that, you have to get in touch with your on-campus disability service provider, or as I like to call them: on-campus disability service denier.

From here, you’ll set up an intake meeting where you discuss what accommodations you would like to receive in your classes, assignments, and exams.

Now, we have to opt-in to our accommodations in all of our classes and for all of our exams. This is made more difficult by terribly designed websites and short opt-in periods – and if you miss your period, you miss out on your accommodations.

Finally, you often have to self-advocate for your accommodations before ignorant and/or ableist professors, who might accuse you of being lazy, faking your disability, taking advantage of accommodations, you name it!

If you are fortunate enough to have professors upholding their legal and contractual requirement to reasonably accommodate you, you can skip the step where you contact your student union’s legal or advocacy resource as you fight for your basic accommodations.

Easy enough, right?

I will allow that many people promoting this rhetoric misunderstand the reality of getting accommodations for physical disabilities. For some reason, they always believe the only physical disability out there is having a broken leg, and that accommodations are limited to elevators and accessible ramps.

I will allow for the fact that a misunderstanding is occurring, but I will also hold these people accountable for using my lived experience as some sort of bargaining chip-slam dunk on inaccessible systems, instead of recognizing it as the valid and consequential lived experience of their disabled peers.

Attitude Check

When I hear the comment as a mentally ill, physically disabled person, I get the vibe that these people believe that people with physical disabilities are less subject to ableism, discrimination, and stigma, and have no mental illnesses themselves.

As someone with an invisible disability that has used mobility aids, I’d like to take a second to recognize able-passing privilege, where you are mainly able to go about your day without being subject to discrimination on the basis of disability. Don’t get me wrong, mental illnesses can definitely face discrimination and stigma, especially when they have physical manifestations. But there is an undeniable privilege in being able to play yourself off as non-disabled and avoid some unpleasant interactions.

Going back to the broken leg example, the comment implies that physical disabilities are easy to understand and face little stigma. After all, a broken leg is a broken leg – it usually doesn’t get worse, it’s usually temporary, and no one blames you for breaking your leg. But summarizing the physical disability experience into a broken leg is incredibly problematic! Physical disabilities are incredibly diverse and manifest in many different ways. Speaking as someone with a chronic, episodic physical disability – how my disability presents itself and the accommodations I need vary day-to-day. Compared to a broken leg, that’s much harder to understand!

The broken leg monolith also implies that accommodations for physical disabilities only include elevators and accessible ramps. Not only is this wildly incorrect, it constrains the expansion of new accommodations! At my current school, I’ve been offered a laptop, extra time, and word processing for my hand dexterity issues, and ergonomic chairs, height-adjusted desks, barrier-free classrooms, and close-proximity classes for my mobility issues! If we only consider elevators and accessible ramps as physical disability accommodations, we deny so many people the basic tools they need to succeed.

Check-In

Aside from dismissing the barriers, discrimination, and stigma faced by persons with physical disabilities, the comment ignores the intersection between mental illness and physical disability. The two are mutually reinforcing: poor mental health worsens symptoms of physical disabilities, and unaccommodated physical disabilities can worsen mental health. People with physical disabilities are twice as likely to have mental illnesses than their non-disabled peers, and ignoring this fact ignores how much the two “categories” have in common. We are all subject to systemic ableism, stigma, and discrimination. We are all being denied our legal guaranteed right to reasonable accommodation, and our right to equal access to education and employment on the same basis as our non-disabled peers. Many of us are both physically disabled and mentally ill!

One last nuance before we wrap up: it is hard to get diagnoses and accommodations for mental illness. I would never deny that. I have jumped through those hoops and over those hurdles. Mental illnesses are subject to different types of medical diagnoses, procedures, and treatment. They face different types of barriers, discrimination, and stigma. They require different accommodations than physical disabilities. They definitely face misunderstandings and misconceptions of their nature and manifestations. I think we can all agree on that. But we should also all be able to agree that furthering the misconceptions and stigma towards other types of disabilities is a futile and undermining attempt to better our respective rights. Why are we trying to tear each other down when we can work together?

If you want to play oppression olympics and vie for that gold medal, I can’t stop you. But when you realize that the medals are only awarded to weigh you down, you’ll know where to find me.

The Intersectional Nature of Systemic Inequity

Thank you so much to uOttawa’s International Development Week for having me back a second year! I had the privilege of speaking on the panel “The Intersectional Nature of Systemic Inequity” alongside Anjum Sultana, Alyy Patel, and Jasleen Kaur. I thought it would be beneficial to share my responses to the provided prompts here, for those unable to attend and as we ran out of time.

Can you introduce yourself and tell us a bit about your work?

I’m Carly Fox – a disability rights advocate, an international development student at uOttawa, and a researcher and communications officer for NEADS. Having been first diagnosed with juvenile idiopathic arthritis at 16, I’ve used my experiences as a disabled and non-disabled person to boost disability allyship and help reduce stigma around disability. In my advocacy work, I’m beginning to get more involved in advocating for the relationships between mental illness, neurodivergence, and physical disabilities after being subject to harmful and exclusive narratives in these communities. In my professional work at NEADS – a by-and-for, cross-disability charity supporting full access to education and employment for post-secondary students with disabilities – I’ve been privileged to meet with disabled student groups and leaders across Canada, research accommodations and accessibility across Canadian campuses, and provide strategic advice to different branches of the federal government.

Why is intersectionality important for understanding systemic inequity?

All systemic forms of oppression are interlinked, and work together to create the foundation for our society and consolidate power and privilege. Intersectionality reflects the basic truth that many people belong to multiple identity groups, and face multiple and compounding forms of systemic inequity. When we fail to center intersectionality in our understanding of systemic inequity, we fail to adequately address the barriers people face and fail to design the necessary solutions to remedy them. The disability community is unique, as it’s the only marginalized group you can join at any time and is open to all backgrounds, orientations, and identities. Understanding intersectionality is also essential to effectively mobilizing against systemic inequity – we are stronger together, and our intersectionality can be our strength.

Why is it important to include intersectional voices in development efforts and social justice movements? What are the negative impacts of not doing so?

In development efforts, there is an overarching goal of improving wellbeing for all – but when we ignore those facing the greatest barriers to full wellbeing, we are being ineffective and resign ourselves to failure. In development efforts, we do not need to include intersectional voices – we need to center them. We desperately need perspectives and insights that enable us to design equitable and impactful solutions that effectively solve problems and address social inequity.

In social justice movements, I believe we are currently feeling the negative impacts of not including intersectional voices. In my personal experience with social justice movements, primarily around queer rights, feminism, and climate change – disability has been deeply sidelined, if not explicitly excluded. This feeling is particularly acute in the disability community: while my queer peers celebrate “marriage equality”, us disabled (and queer!) people are still unable to marry the people we love while keeping our critical disability supports. In no way is it acceptable to celebrate marriage equality when we are still faced with an ultimatum between essential disability-specific supports and our loved ones. Additionally, I have been more and more often welcomed into spaces as a woman, as a queer person, and as a queer person – but until I am welcomed as a queer, disabled woman, I am not welcome. I cannot enter into any space without entering in my entirety.

In both development efforts and social justice movements, we need to understand that we are stronger together – and when we only accept those belonging to identical identity groups, we are divided, weakened, and unable to create real and lasting change. Your development efforts and social justice movements will remain incomplete and unrealized until everyone belonging to your issue or identity group enjoys full rights.

What do you see as the most pertinent barrier to addressing systemic inequity in an intersectional manner? How can we work to overcome this barrier?

I believe that the greatest barrier to addressing systemic inequity in an intersectional manner is the attitudes we hold.

The first attitude acting as a barrier is the belief that if you are oppressed in one way, you cannot contribute to the oppression of others. You 100% can! Me being disabled does not absolve me of racism or transphobia, in the same way that being gay does not absolve someone of being ableist or sexist.

The second attitude is believing that any attempt at intersectionality absolves you of consequences for harm caused. Trying is great, but trying is not enough. Intersectionality is not a bonus, a checked box, or a skills certificate – it’s the bare minimum, and it cannot be treated as anything more than that.

The third attitude concerns those in power, who believe we are too oppressed to hold them accountable. This attitude is violently on display in our elections, where inaccessible voting systems keep disabled people away from ballots and disabled issues off the agenda. I believe we’re in the middle of a massive shift where non-disabled people are learning that issues of accessibility, poverty, and health effect them too, and I ask that we all vote with those unable to do so in mind.

The final attitudinal barrier relates to the inaccessibility cycle, and believing that because no one of a certain identity group is present, they do not care. This could not be further from the truth! The inaccessibility cycle starts with disabled people unable to access venues to participate in activities that interest them. From here, those in power believe disabled people are uninterested or uninvolved, and there is no incentive to remove barriers preventing our participation. This creates a vicious cycle where no disabled people are able to join spaces as barriers become further and further entrenched. It’s important to remember that 1 in 5 Canadians are disabled – you just can’t see us because you have an inaccessible environment.

What are the biggest issues regarding intersectionality and/or systemic inequity in your respective fields of expertise?

Systemic inequity threatens the autonomy and agency of the disability rights movement. “Disability organizations” led by non-disabled people are hijacking disabled spaces, monopolizing funding opportunities, and perpetuating the systemic ableism that benefits them. These organizations alter school curriculums, advocate for us, and treat us like problems to be fixed, all while spreading harmful and false narratives that we are unable to advocate for ourselves. We have been, and always will be, able to speak for ourselves – we are simply prohibited from expressing ourselves in accommodated and non-conventional ways. Give us the tools we need to speak, and get out of the way. We are able to speak, and we have things to say.

Intersectionality is also a major issue in the disability rights movement. White, rich, straight, cisgender men with simplified narratives maintain the majority of positions of power. This perpetuates intersecting forms of systemic oppression, and narrows the focus of the disability rights movement to the needs, perspectives, and beliefs of a privileged few. This consolidation of privilege occurs under the systemic racism presenting barriers to self-advocacy and diagnoses for racialized folk, systemic sexism preventing women from equal access to diagnoses and care, and other systemic forms of oppression preventing people from receiving adequate, cultural and gender sensitive care.

Further, inter-disability ableism is alive and well. As someone who identifies as neurodivergent, mentally ill, and physically disabled, I have heard disgustingly ableist rhetoric used by these groups against these groups. And I have to ask, what are we fighting for? Why do we not identify a fundamental issue with tearing down those going through similar struggles as us? I’m not here to play oppression olympics, I’m here to make the world a safer, more accessible place for everyone.

How can we work to address issues of systemic inequity in our everyday lives and in an intersectional manner?

I’ll break down my approach to addressing intersectional issues of systemic inequity on an every day basis into three points.

One: have an open and growth-focused mindset – there will be a lot of uncomfortable learning and you will have to own up for your mistakes, but you will improve with time and application.

Two: surround yourself with people of all different identities – if your circle only reflects your personal experience, it’s just an echo chamber. This is not a pass to go Pokémon catch-em-all with random marginalized people, but an invitation to reflect on why and how you created a space that is unwelcoming or inaccessible to those unlike you. You can improve by following and learning from advocates, activists, and creators (compensation is appreciated if possible!)

Three: you have to hold the spaces you occupy accountable for the environments they create – especially if that is uncomfortable. At school, at work, and in life, look around and see who is not at the table, then ask why this is happening. In holding spaces accountable, remember it is your job to make space, not take space from others or speak on their behalf.

Arthritic Carly 2.0

Summary: Arthritic Carly is back folks! After nearly 6 months in remission, my joint inflammation is back and my immune system is ready to attack. My main challenge now is figuring out how to tell everyone the news without being subjected to pity. (If someone throws me an ironic celebratory party, I will probably attend.)

It’s hard enough to come to terms with my nearly half a year of joint inflammation remission coming to an end, but it’s even harder to share this news with others. After almost six months, it feels as though I’ve forgotten how to be arthritic, and those around me have forgotten I’m disabled.

Like all things surrounding complex and chronic illnesses, I’m facing uncertainty. I’m uncertain if I’ll be able to get a hold of my old rheumatologist, I’m uncertain if I’ll be able to maintain my pace at school and work, I’m uncertain if I can keep doing all the things I love. Above all, I’m uncertain how to act. How to act, how to tell others, and above all – how to deal with others’ disappointment that my remission is over. Those closest to me do not feel pity. Their empathy echoes my uncertainty, as we both are uncertain of what is to come but know we must brace for the worst. For those not-so-close and not so arthritis-aware, they might be a little more unsure about what this means (literally – like what remission means.) While many of my peers and acquaintances have been fantastic listeners and do their best to understand my disabilities, most people don’t know arthritis can go into remission, let alone that remission is not forever.

I won’t fault them for that – I also forgot remission doesn’t last forever.

There’s this strangest phenomenon that’s been happening to me ever since I became disabled at 16: gratitude where gratitude should not conventionally be. As I get overwhelmed by planning for my once again arthritic future, I’m grounded in gratitude that I entered remission in the first place. When I was diagnosed with juvenile idiopathic arthritis at 16, my paediatric rheumatologist found inflammation in nearly every joint in my body. As she poked and prodded me, and as my twin and mother watched on, I began to recognize the extent and severity of my arthritis, and began to feel angry that I and others allowed it to get that far. At 16, I never believed I would enter remission.

Before we go further, please know that remission is not earned. You can change your diet, your habits, your lifestyle, and still not enter remission. Remission is not a value judgement of your worth as a patient, as a disabled person, or as a human – it just happens and no one knows why. What I can say about getting to remission is that when I was on steroids and biologics, the far-flung hope of remission kept me going through some very rough times. I lost my weight, my hair, my appetite, my personality – but I never lost that hope that things had to get better. And three and a half years later, things did.

Remission was fantastic. There is no shame in wanting to be in remission, and mourning when you lose it. There is also no shame in being disabled, receiving treatment, and asking for help. I don’t believe these things have to be mutually exclusive. In remission, I started my second year of university, aced my classes, rocked my extracurriculars, and fell in love. I had energy and optimism in ways I never had before – knowing that I was temporarily off treatment and that treatment worked was enough to sustain me in doing things I used to think impossible. I became a star student and never missed a class, I was a stand-out employee and never missed a deadline. And now, I’m still doing all of these things – just with active arthritis.

Losing remission can make you feel like your world has stopped spinning. Like everything comes crashing to a halt. But it doesn’t – life has (a sometimes very inconvenient) way of carrying on no matter what you’re going through. Losing remission won’t change who I am, in the same way having arthritis doesn’t change who I am. I’ll still give loud, energetic takes in class – I just might be sleeping on my desk in between them. I’ll still deliver at work and love my job – I just might take a break during meetings. I’ll still be me, the same way I was me at 16 with active arthritis, at 20 in remission, and still at 20 with active arthritis.

Science Breakdown

Juvenile idiopathic arthritis (JIA) is an autoimmune condition primarily causing inflammation in the joints in patients age 0-16. As JIA is a childhood disease, as patients age they either “grow out” of JIA and the disease goes away on its own, or they receive an “adult” diagnosis – which can include rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. All autoimmune disorders can enter phases of remission, where a patient’s disease activity is paused. Remission can last weeks, months, years, and even for the rest of someone’s life. It is not uncommon for JIA patients to experience a few periods of remission within their lifetimes. The cause of remission, much like the cause of JIA, remains unknown.

Welcome to the Blog!

one line illustration of a fox head and text reading "Carly Fox Disability Advocacy"

It does not feel humble to write a blog. It seems to give the general impression that I am an expert, qualified to speak on anything and everything disability. Please know, this is not the case.

Like any disabled person, I am not a monolith. Just because I have some disabilities does not mean I am qualified to speak on them all, or to speak for everyone with my disabilities.

This has become a fairly rehearsed disclaimer, but one that still irks me. Of course I can’t speak for everyone, of course I am confined to only my personal experiences. But time and time again, I am treated as a monolith, as an inspiration, as someone to be saved or protected or coddled.

When telling non-disabled people about these experiences, I’m often met with wide eyes and nodding heads conveying a “Of course! How could others be so ignorant!” But by the time our meetings are over, the wide eyes and nodding heads give way to parting words of “thank you for your bravery in sharing your experiences” and “thank you for your impactful perspective.” Ignorance prevails, but under the checked box of “consulted with stakeholders” and a warm thank you email.

Nothing about disability is easy. It is complex, and messy, and confusing. In the disability community, the infighting and cross-disability ableism makes matters worse for the non-disabled onlooker. To those without disabilities among us, I invite you to be confused. And overwhelmed. And frustrated. If you are not feeling this way, I have failed you as an advocate by sanitizing my experiences with disability. If you feel like giving up and turning away, I will have succeeded in my duties, and if you choose not to give in, you will have truly begun your allyship journey.

And for those of you with disabilities, challenge me. Challenge my beliefs, my perspectives, my values. Hold me accountable for positively contributing to the disability rights movement, and I will return the favour. In advocacy, we often forget to write for the communities we serve. So, I will write for you, for myself, for the community, and for the allies. I encourage you to do the same.

With non-disabled folk monopolizing the conversation, funding, and platforms, we need more disabled voices in the disability movement. The fact that this has to be articulated shows how much we are up against. To my disabled peers, your voice matters. Your experience matters. You matter.

Disclaimers aside, promises made, and audiences addressed – welcome to the blog. We have a lot of work to do.