Tag Archives: invisible disability

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.