Tag Archives: disability

Self Advocacy: Why Is It So Hard?

Disclaimer: I will be narrowly balancing a shameless self-promotion and what will hopefully be a helpful resource throughout this blog. Read at your own risk folks.

I’ve been invited by Take a Pain Check and the Canadian Arthritis Patient Alliance to speak at their Instagram Live on Self Advocacy tomorrow, and while it’s pretty late on a Saturday night and I should probably be doing social life things – I just had to write this blog. As I do with all my speaking engagements, I prepare some talking points on pre-determined topics or prompts – and while I can usually write all my thoughts out and be satisfied, I don’t think I’ll be able to fit everything into a one-hour event – and I talk really fast.

Self advocacy is essential, vital, crucial, life-or-death to the disability experience. We have no choice but to advocate for ourselves in all spheres of our lives – be it healthcare, school, work, the community. And while self advocacy is so crucial, and every organization has put out resources on it at least once – it is still. so. hard. to. do. And the concept still feels so out of reach to so many people. So – why is self advocacy so hard? Why does it feel like we’re always talking about self advocacy but not actually doing it? Let’s figure it out together.

First off – what is self advocacy? Great question right? Unfortunately, I don’t have a straightforward answer for you – because the first half of that term makes it very personal, very powerful, and very vulnerable. I can, however, tell you what it means to me – self advocacy means sharing my needs, my experiences, my perspectives, and my goals with others to create more accessible and inclusive spaces. To me, self advocacy is a two-way street, a constructive and open dialogue that can be uncomfortable at times. 

After all, a lot of the time we need to advocate for ourselves during serious power asymmetries. Why would an overworked, underpaid doctor want to hear me out? Why does my professor need me to explain my accommodations when it’s a legal requirement? When these gatekeepers (in a dictionary sense of the term, not a name 5 of their albums vibe) have so much power, it can feel unfair that I have to do all the heavy lifting. But here’s the kicker – when it comes to what I need, and what I’m experiencing, I’m the most qualified person in the room. Every. single. time. And that undeniable qualification is what allowed me to work through the catch in my throat and the tears in my eyes, to show vulnerability and ask for help, and to advocate for myself and my needs.

Self advocacy is widely acknowledged to be incredibly uncomfortable to do – but maybe it’s worth considering that it’s uncomfortable for others involved. Disability is rarely accurately understood by non-disabled people, and no one likes to feel uninformed or called out. When we take that extra step of encouraging a safe and open conversation, we’re able to honestly discuss what we need and address any confusion or misconceptions that often prevent us from getting it. I know, when you are at a power disadvantage it feels so fundamentally unfair to be asked to put in extra work – especially in life or death situations. Unfortunately, we are working against centuries of systemic ableism and an oppressive status quo – so we are going to have to suck it up and carry on so that the next generation might not have to. 

My Experience with Self Advocacy

Like presumably everyone else, my first kick at self-advocacy (or more-so, my failure to kick it at all) was frustrating, embarrassing, and difficult. I haven’t discussed it here on the blog much, but in the two years between my twin’s diagnosis of JIA and mine – I convinced myself I was just a very empathetic person. I practically gaslit myself into thinking I was imagining disabling pain for two whole years. For that whole time, I didn’t realize I needed to advocate to myself, for myself. Once the pain became (even more) unmanageable, I went to the doctor that referred my twin to a rheumatologist to ask for a referral myself – the same doctor that told the both of us for years that it was just growing pains. I was probably emboldened by her being proved wrong by my twin, which enabled me to approach this self-advocacy with an assertive attitude. To no one’s surprise, except that one doctor, I had JIA too. 

My first attempt down and a billion more to go, it was time to take the self-advocacy show on the road: first stop – high school. While the medical model is an absolute nightmare and a diagnosis is no golden ticket, having documentation behind me quieted down those thoughts that used to tell me it was all in my head. I realized that no one knows me the way I know me, and that I’m my best bet for getting the accommodations I need. Getting my initial accommodations was easy enough, but the real test was when my JIA became so bad I almost dropped out of school. I had to meet with my vice principal, the attendance officer (a chronically ill high schoolers sworn enemy), and my accommodations supervisor (who I don’t remember showing up) to discuss why I was missing so much school and what we were going to do about it. While I love to prepare for these kinds of meetings now, 17 year old me had no clue what to expect, let alone what the available options were!

So, I approached the meeting with an open mindset and the acceptance that I would probably cry during this meeting – whether out of frustration, vulnerability, or overwhelm. While I did speak in a croak and wiped away a tear or two, I explained why my attendance was awful and made it clear that I did not know what options were available. And that’s how this self advocacy thing clicked – once I explained my experience and outlined my expectations (or rather, lack thereof) I was able to work with everyone involved to explore agreeable options and choose what worked best for me. On top of that, some follow up self-advocacy work on my part with some favourite teachers kept me in band once or twice a week and my first period literature studies class after that. 

With that experience behind me, self advocacy got easier with practice – but that doesn’t mean it stopped being hard. Switching into adult healthcare was a massive learning curve, and a dehumanizing rediagnosis process was enough to scare anyone away from self advocacy. After moving 8+ hours away from my family and hometown, I can feel caught mid-air without my self advocacy safety net. And keeping my cool while being the only disabled advocate a high-level, incredibly consequential consultation on post-secondary disabled students’ supports really tested my resolve. Hard? Yes. Worth it? Always.

I try not to talk too much about my work at NEADS, as I still need to navigate that separation between work and private life to avoid this – (disclaimer: views are my own and do not reflect that of my employer.) But I have to give them credit – being employed to research and create resources on self advocacy has empowered me – empowered me to learn from others, empowered me to challenge myself to set a good example, and empowered me to feel qualified in my personal self advocacy work. On the other hand, being so open about my disability and having a by-and-for disability organization on my resume means self advocacy will always be required in other jobs – and I have a feeling not all of my supervisors or hiring managers will be as understanding as my disabled colleagues. On top of that – I still have future healthcare visits! I’ll have to see a dermatologist soon, and transition clinics only last up until a certain age.

Don’t get me wrong, I don’t regret a thing (related to working for NEADS and being a disability advocate) – disability advocacy has been incredibly fulfilling, humbling, and empowering. From the start, I’ve always had disabled acquaintances reach out to tell me how empowering it is to have someone out there advocating and raising awareness – making them feel more included and understood. I mean, once someone tells you that and once you realize it’s true – how can you stop? And once you get started, you get caught in this all-seasons snowball as your network expands and opportunities become more available. Podcasts, documentaries, and instagram lives are all really cool – but working with your peers and representatives to make tangible change benefitting your whole community? I still can’t wrap my head around it. Maybe it gets a little (or a lot) weird when people prepare their presentations for your disability inclusion questions, or check you off on the guest list before you introduce yourself – but for some weird reason I have been given the power, positions and privilege to get stuff done, and I’m going to use everything I am given to create sustainable change for our communities. It would just be too much of a waste not to.

Tips for Self Advocacy

So – you’ve made it this far. Hopefully you understand what I mean about not being able to fit this all within an hour. I’ve managed to talk a lot about my experience with self advocacy without giving any actual tips, so please enjoy this section where I will overcompensate for that imbalance. Or, we can just pretend I’ve centralized all my tips here for simplicity – your call.

Understand that you are the most qualified to advocate for your needs, your experiences, and your goals. No one knows you like you do! And no one has the right to pretend that they know better!

Recognize that self-advocacy is hard for everyone. Self advocacy requires admitting that things are not okay, and that you need help – literally no one enjoys that! Self-advocacy requires you to challenge the status quo – something many of us are conditioned to never do. By recognizing that self advocacy addresses forces way out of your control and that all you can do is your best, you’re bringing the compassion and empathy required for effective self-advocacy to the table. 

Realize that self advocacy is a two-way street! Or maybe more like a four-lane two-way street with a streetcar depending on how many people are involved! Self advocacy requires all parties to communicate and listen, and constructive and empathetic dialogue is your best bet in achieving a better outcome for everyone involved. 

Reach out! If you don’t feel comfortable self advocating just yet, don’t deny yourself essential accommodations or support. For post-secondary students, your student union should have an advocacy support available. For high school students, reach out to your student council, a trusted friend or teacher, a guidance counsellor, or a family member for help. 

Work through the discomfort, and the choked up throat, and the tears if you have to. These are not a sign of weakness – they really truly are a sign of bravery. When you know that something is hard, or scary, or overwhelming and do it anyways? That’s real power. Starting self advocacy is the hardest part, but what is hard today is at least a little less hard tomorrow. 

You’re probably already self advocating and just don’t realize it! Self advocacy isn’t just about accommodations at school or work – we self advocate in everything we do! We self advocate in our relationships by communicating our wants and needs, we self advocate at work and school for opportunities and promotions, and we self advocate in the community when we share our ideas for change.

So, there you have it. A blog post on self advocacy. To answer the second question I completely forgot about until now (I never said I was an organized writer), we are always talking about self advocacy because it is so personal and complex – there is so much to explore, and so much to improve. But at the end of the day, there is no guaranteed way to successfully self advocate – there’s just too many variables. So, we can share our experiences, and our best practices, and a few lessons we learned along the way – the rest is going to have to be up to you.

Trust in yourself, know you’re the best one for the job, and go give them hell – in an empathetic and constructive dialogue-y kind of way.

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. 

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

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. 

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!

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.