Tag Archives: disability community

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. 

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.