Tag Archives: disability advocacy

Becoming Disabled

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

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

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

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

So, let’s unravel my disability experience together.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Differently Abled”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disabled, disabled, disabled. 

Mental Hell-th: Bringing Back My Mental Illness Advocacy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Welcome to the Blog!

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.