Meeting the Non-Disabled Gaze

When I first got into disability advocacy, I had only been disabled for a year or two – meaning I had spent the majority of my life as non-disabled. This really influenced how I approached advocacy, and how I was able to relate to non-disabled people in a way that made disability more approachable and relatable. 

While the majority of my life has still been spent as non-disabled (and I will not get to the tipping point until 36!), I’ve found that my approach to advocacy has shifted as I’ve embraced my disabled identity and crip culture over the last few years. In short, I began to write for myself and my peers instead of writing for non-disabled people. 

But the thing is – I know what it’s like to be disabled. My disabled peers know what it’s like to be disabled. Non-disabled people don’t know what it’s like to be disabled – yet.

And while I believe raising disability awareness and sharing my experiences can help non-disabled people start to understand disability and practice disability allyship – it can kinda be exhausting and overwhelming trying to boil down such a complex and personal experience into something understandable and palatable.

Being a disability advocate is a balancing act between holding the non-disabled gaze by making disability approachable and understandable, and being honest about my lived experience and being accountable to my peers. 

My work does not exist in a bubble – if I sugar coat my experiences, other disabled people will be dismissed or gaslit. If I’m too honest about how my disability impacts me, or too nuanced in explaining disability, or try to approach complex or controversial topics – the non-disabled gaze drops.

And that’s a lot of responsibility to hold, especially at twenty!

While I always do my disclaimers that I can only speak to my personal lived experience and that I could never represent every single disabled person within the disability community, I’m constantly mindful that some people choose to ignore this and take my words as The Disabled Experience. That some people think speaking to me checks their Diversity Equity Inclusivity box, or counts as a formal consultation with the disability community. That supporting my advocacy work means supporting the entire disability community, and that supporting me is enough to understand what disability is.

And there I go, dropping the non-disabled gaze again.

Before I was disabled, and even now – I wanted to be told disability is easy. Easy to live with, easy to understand, easy to talk about. But I wasn’t told this, because disability isn’t easy.

While I was loosely aware of disability, I didn’t have a great idea of what it meant. I thought of people in wheelchairs, and people with absolutely no vision or no hearing. I thought the only accommodations were service dogs, wheelchair ramps, and accessible stalls.

When my twin was diagnosed with arthritis two years before me, disability stared me down for the first time. It was complex, and overwhelming, and upsetting, and I didn’t like it at all. I didn’t understand what an autoimmune disorder was, or why my twin was always sick, or why she wasn’t going to school.

Instead of trying to understand, I shut down. I shut down because it was all too much – it was too overwhelming trying to understand that I didn’t even know where to start! I didn’t want to ask my twin about it – it felt too private, and I felt too awkward. I tried googling her disease, but everything that came up was in medical jargon. No one seemed to be talking about the human impacts, no one seemed to be having any human impacts at all.

So, if I still have the non-disabled gaze, please know that I felt the same way you might feel now. Like disability is too much, and that trying to understand it is too hard. But I, and countless other advocates, are doing our best to help you understand.

And all I can possibly ask of you is that you do your best too.

No one is asking you to be perfect – to be an expert on disability, to always know what to say to disabled people, to see inaccessibility all around you.

We’re just asking you to try – and I know that’s easier said than done. 

It’s hard knowing where to start, where to go next, and if you’re on the right track.

It’s hard consuming all this complex information, sometimes with conflicting perspectives and definitions.

And it’s hard to understand that disability is not inherently negative, because we were raised our whole lives being told it was.

I know it’s hard, you know it’s hard, I’ve told you it’s hard, you probably agree it’s hard. Glad we’re on the same page. But we’re gonna have to keep going – so that you didn’t read this blog for nothing, and so that I didn’t write it for nothing.

Here are some tips for those new to disability allyship.

I’ve offered some of these across the blog, across my socials, and within my circles – but I’ll offer these and more here for you to check out.

And yes, these are catered towards non-disabled allies – the cross-disability allyship blog will have to wait another day, but these tips can work for disabled people too.

Step #1: Ask yourself, “what is disability? what does disability mean to me?”

Before you start, you have to understand where you’re starting from. When we explore what we already know and why we know it, we can start to find gaps in our understanding our even some biases to unpack.

Step #2: Ask yourself, “am I disabled? could I become disabled? is someone close to me disabled?”

It’s easier to understand something when we can place ourselves in it or near it. We all have some relationship to disability – even if we haven’t discovered it yet! A lot of disabled people don’t even know they’re disabled (read my blog on identifying as disabled for help with this) And a lot of non-disabled people don’t realize there are already disabled people in their lives and spaces,

Step #3: Find out what you want to know about disability – the basics, how it applies to your interests, how it impacts people, the culture – and go from there.

Everyone gets into disability allyship for different reasons – ask yourself why you’re here and what you want to learn, but also ask yourself why you feel this way. Do you want to make your spaces more inclusive? Do you think crip culture is cool (shocker: this is okay to think! it’s really cool!)? When we ask ourselves why we want to know more, we can keep unpacking our pre-existing thoughts and feelings on disability, which can help us learn better and be better allies.

Step #4: Always keep learning – and keep learning from all types of disabled people.

Like every other kind of allyship practice, it’s an ongoing commitment! There will always be something new to learn, or a new event or law to learn about. There’s also a lot of diversity within the disability community – to better understand disability, you need to understand how it affects all kinds of people.

Remember, all we ask is that you try your best. This will probably be some confusing, thought-provoking work – work through it, and I promise it will be worth it. one day you’ll appreciate it. Hopefully, you’ll want to keep learning more about disability, the disability community, and disability allyship.

Start Here

Crip Camp – Sundance Award Winner and Oscar Nominee, Crip Camp details the American Disability Rights Revolution and its origins at Camp Jened. A moving, true, and authentic look at both crip culture and disability rights movements.

Demystifying Disability by Emily Ladau – An approachable, beginner-friendly book and guide to disability advocacy

The Disability Visibility Podcast by Alice Wong – 100 episodes increasing disability visibility, as part of the larger Disability Visibility Project. This is a great podcast for people interested in crip culture, disability rights, and intersectionality.

Find disability advocates in your area through social media, events and conferences, and by-and-for disability organizations (read more on the importance of by-and-for groups here!)

Back to School 2022: What Happened?

This is going to be another one of my from-the-heart, write as you go blogs.

The last few days, I’ve been fighting through tears and a choked up throat as I try to cope with how ableist, inaccessible, and exclusionary Fall 2022 has already been. Dealing with the massive rollback of accessibility and accommodations on-campus was already enough (if not more than enough!) but to watch my peers – my friends – host non-masked, inaccessible superspreader events in the middle of an ongoing global pandemic has honestly made me feel as though people want me dead.

As though people have pretended to care about disability rights, disability justice, accessibility, myself – just to appease me. Just to shut me up. Just to get me off their backs. Just to wait me out. 

Because when you have an autoimmune disorder in the middle of a global pandemic and people care more about awkward icebreakers with strangers than you living to – at the very least – complete your degree – wouldn’t you feel like people want you dead too?

I feel like I’ve done everything short of begging on my hands and knees for people to care and remember that disabled students still exist. Spoiler: we still exist!

Even though so many of us have had to drop out of school, even though so many of us have died. And if I felt like begging would work, I would have done it by now. 

I have created educational content on how to host hybrid, accessible events. I have answered ignorant DMs asking me to do people’s work for them – for no compensation and no credit. I have talked to the press. I have offered free anti-ableism and accessibility training to student groups. I have offered accessibility insights for free.

I have offered my time, energy, sanity, wellbeing – everything I have. I have bit my tongue and swallowed my pride. All because I genuinely hoped – and still naively hope – that I can make a difference. Not globally, not nationally (alone), but just on my university’s campus. Just among my peers. Just among people I thought I could consider my friends.

And you may say, “that’s so dramatic”. And I can’t blame you – before I was disabled I genuinely believed “ableism” was overhyped, overplayed, social justice snowflake warrior nonsense that wasn’t real. (I’ve written on it what feels like a billion times.)

But that’s how ableism remains so prevalent and pervasive – it’s how it continues to be excluded from equity diversity inclusion training and allyship campaigns. It’s how disabled people continue to be murdered by their governments around their world, and hidden away from society.

And all I’ve ever asked was for people to try their best!

To listen, to learn, to be allies. I’ve tested my patience trying to unpack microaggressions, I’ve answered ignorant emails asking for free consultations without credit. I’ve put aside my personal life to contribute to something infinitely larger.

I’ve given disability advocacy the best I can – I’m only asking others do their best too. I’ve said disability advocacy is a two-way street, we have to listen and learn to improve. We have to grow together. 

So after all this, after all this work, after all this pain and suffering – I feel like I’m left with nothing. Or better yet, I’m left with 101 week. An overwhelmingly in-person only, unmasked celebration of ableism.

Of ignorance. Of apathy. Of burnout.

I get it – this pandemic has been tough. We have all went through a lot. And most people are not hardwired to cope with so much persistent bad – even existential – news.

But that doesn’t mean we get to give up. It doesn’t mean we get to pretend a pandemic is over. It doesn’t mean we contribute to the massive rollback of accessibility and accommodations on-campus.

We have fought through this for over two years now – and we haven’t fought so hard, and for so long, to give up now.

And let’s remember – from Day 1 of this pandemic it was disabled people most at risk. And of disabled people – poor, black, indigenous, queer, trans, homeless, racialized, disabled people were most at risk.

And it feels like non-disabled people still don’t care! Non-disabled people were relieved we were the ones dying. Non-disabled people thought we weren’t worth saving. Non-disabled people abandoned us. Non-disabled people control our governments, our health agencies, our international organizations. Non-disabled people didn’t just leave us to die, they offered us up all so they didn’t have to wear a mask and social distance.

But during this pandemic, we learned so much about just how accessible the world can be!

Where disabled people used to have to extensively coordinate personal arrangements to have food and medication delivered, food delivery services became the norm.

Where disabled people had to beg to be included in alternative formats, online conferences became the norm.

Where disabled students demanded equitable, accessible access to education just to be denied, fully online schooling became the norm.

In all of these cases, we were denied basic accessibility to essential rights. We have the right to accessible food, to accessible social lives, to accessible education.

And I will not be gaslit into believing I don’t. Into believing it’s not possible. Because this pandemic explicitly showed us that the accommodations we’ve requested have always been possible – non-disabled people just never felt required to act on it. 

And now, after we’ve been shown how accessible the world can be when it benefits non-disabled people – non-disabled people are eagerly returning to the “before times.” While companies and governments claim to “build back better,” accommodations and accessibility are being sidelined – as they always have been.

That’s where we’ve been and where we’re at now. And I’d love to get into where we’re going – but I just don’t know.

I don’t know how else I can beg people to care about the disability community. To undergo the minor inconvenience of wearing a mask to not literally kill other people. I don’t know how to keep advocating as people begin to shut off and shut down.

I feel like I sound like a broken record – but how can I not if people won’t listen to the most basic explanations of ableism and how it manifests. 

Here’s where I’d like us to go: I’d like us to enforce masking again. I’d like us to pay attention to our actively collapsing healthcare system. I’d like us to listen to others and practice empathy and allyship. I’d like disability to be included in “intersectionality” and “building back better.” I’d like to not get COVID again. I’d like to not worry about my disabled friends dying.

I’d like student groups to reach out for anti-ableism training. I’d like organizations to stop asking for my free emotional labour. I’d like my peers and friends to actually care about disability justice and accessibility – not just appeasing me in the short-run.

I’d like us to remember what we’ve lost this pandemic, and what we’ve been fighting for all along. I’d like to come out of this pandemic (whenever that may be) stronger, closer, actually better.

And one last disclaimer before we’re done: I know I am not alone. Disability advocates have been – simply put – hauling ass this pandemic. I’m not the only broken record still spinning on the turntable, even when the room is empty and the dust collects.

Disability rights are slowly (so, slowly) entering the mainstream – and they have been for a very long time! Without the work of past disability advocates, we would’ve been killed off much faster than we’re currently are now.

Disabled people have set clear boundaries and have taken heartbreaking precautions just to stay alive. I’ve been privileged to be mostly surrounded by people who can understand that I’m at risk and need to be cautious. But in an individualistic, ableist society – we feel alone. 

Being disabled in a pandemic is like scuba diving without an oxygen tank.

Every action, every move forward threatens my life. But when I talk to other disabled people, it’s like I can come up for air and breathe again. And I’d much rather be given an oxygen tank than be forced into struggling for the next air pocket.

This feels excessively metaphorical, but I am running out of ways to express a not so rare phenomenon.

Speaking to disabled students across Canada through NEADS has showed me I’m far from alone – which is good for my mental health, but obviously terrible when we grapple with the fact that so many disabled people are fighting the same battles across the board day after day.

While disabled people are about 20% of the world’s population, we need non-disabled people to practice allyship and get us to majority. We need people in power to care, and we need to be put into positions of power. We need to be able to access spaces to change them. And we need to survive this pandemic to change how we respond to the next one.

Mask up. Get your boosters. Host hybrid events. Do your best. Don’t suck.

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