A Disabled Hiker’s Guide to Gatineau Parc

You know how I say disability and disability pride is different for everyone because disability is so inherently personal? You’re gonna want to keep that in mind for this one! 

To wrap up disability pride month, I chose to solo hike 10km in Gatineau Parc. While a lot of people thought this was a terrible idea on account of my arthritis, fibromyalgia, PTSD, and anxiety (and yes, objectively it was,) I thought it was a fantastic opportunity to honour my disabilities by doing what I love – not spiting them or ignoring them, but incorporating them into something I’ve always loved.  And I’m not the only disabled person who loves hiking – there’s a whole movement of disabled hikers challenging how people perceive disability both on and off the trails!

Before I get into the hike itself, we need to talk about the preparation – one of the most important things about hiking!

Since I was solo hiking and coming back from a pretty lengthy hiking hiatus (hike-atus), I honestly had no clue what to expect – most of the women-specific solo hiking advice I received was “don’t do it,” and no one really makes hiking tips for disabled people (don’t worry, tips on solo and disabled hiking are at the end of this blog!)

Despite the discouraging lack of resources, I planned out my hiking routes in a move very similar to my everyday anxious life and packed my favourite joint braces in my daypack. While preparation is essential for a good hike – once you’re out there you’re pretty much on your own, so it’s best to prepare for everything you can.

Now for an ode to queueing: I arrived 30 minutes early to secure a seat on the NCC’s free shuttle bus to the park and stood the whole time in a queue. As an invisibly disabled person, showing up early helps me secure a seat – except for today – once the bus came a ton of people jumped the queue, and I ended up standing on the bus for over an hour.

As you can imagine, it did not feel great and was not the best start to the day. When you have limited energy and ability, a 1-hour standing bus ride throws everything you planned so carefully out the window – and the people who jumped the queue will never know how they made a disabled girl stand for an hour. So, be nice and queue. 

One bus ride later I arrived at the underwhelming visitor’s centre, which I would rate an “accessible flop” – accessible, but still a flop.

While most of the information there was largely unhelpful, a tasteful kid’s exhibit taught me there were fishers in the park! (For those who don’t know, fishers are like really big weasels with knives for hands that can slice a house cat in half.) Having spent at least an hour googling animal safety tips for black bears and coyotes, this was equal parts terrifying and hilarious – clearly I wasn’t as prepared as I thought, but I’ve been wanting to see a fisher ever since I learned they exist!

Now for the “accessible” in “accessible flop”: the accessible washroom stall had a sink and tilted-down mirror in the stall! I don’t know what kind of accessible stalls we’ve all experienced, but this was my first time seeing a sink in the stall – and it makes a lot of sense!

I left the centre with this message: you might die here, but it’s probably gonna be accessible. Not bad!

I took the shuttle that runs through the parc over to the accessible Champlain lookout, and found myself in what can only be described as a Friday the 13th Biker Gang Rally if motorcycles didn’t have engines. Yep, this place was packed with bikers (for those that don’t know, parts of Gatineau parc are closed off to cars on weekends, so bikes usually have free reign.)

While the “accessible bus stop” wasn’t barrier free, it was accessible, and the lookout’s stone wall was low enough for people in wheelchairs to actually be able to see the view. Not bad!

While Champlain has an accessible lookout, the trails aren’t universally accessible. Some trails are, and that is wonderful, but I can’t deem it reasonable to ask Gatineau Parc to pave over all of their hiking trails.

Some of you may be surprised that I’m saying this, as I seem to have a reputation for not compromising (or at least I used to before the pandemic happened and I got soft.) There’s a lot of nuance when accessibility and the environment intersect – but I will never excuse eco-ableism.

(A quick aside: London Ontario had a community projects contest that pitted accessible swings for children against initiatives like bat houses and private porch parties. And bat houses won. 4 out of 4 accessible swing initiatives did not receive funding. Bat houses. Houses for bats.)

Back to the Champlain trail!

This 20 minute loop was my very first test as a solo hiker – and unsurprisingly, I didn’t ace it. The trail was completely deserted, and while humans are usually the ones pushing me into hypervigilancy, being so alone ironically invoked the same response.

Knowing I was completely alone and any screams would not be heard, naturally I speed walked the hell out of that trail and did a hilarious step-clap type move down the trail to warn nearby animals.

But it wasn’t enough – around 3/4s through the trail, a bush was suspiciously rustle-y. So, like any rational person, I started clapping at the bush. Applauding the bush. Technically, a standing ovation. 

What comes out? A WILD TURKEY.

A. Wild. Turkey.

I was prepared for bears, coyotes, ticks, and fishers – not wild turkeys! And this guy was massive! Luckily, I applauded him offstage (he turkey-walked away), and continued my speed walking.

Once I re-emerged in a more environmentally friendly knock-off Harley Davidson event (the bikers were still hanging out), I sat on the stone wall and asked myself what the hell I was thinking. I realized I was not prepared at all for this solo hike, and decided to skip the longest trail of the day.

That choice lasted for about three minutes before I remembered that the trail has a waterfall.

Completely disregarding the lesson I was probably supposed to learn, I rode the shuttle over to Lauriault and started my next hike – a 1 hour, 15 minute trail (not a loop!) that would take me to the Mackenzie King Estate.

At the start of the trail, I saw an accessible portapotty (and the only portapotty at that site) for the first time and took it as a sign things were looking up. And they were!

I started with the 400m hike to a lookout, where I promised myself I would re-evaluate how I was doing and decide if I wanted to continue with the hike. Having already passed two solo women hikers and a father-daughter duo, this trail felt a lot safer in my PTSD brain. And I was rewarded for my perseverance with a phenomenal appearance by a sapsucker bird – think fluffy woodpecker with black and white stripes.

While this trail was by far the easiest terrain of the three trails I took that day, it definitely kicked my ass the most for reasons I still don’t understand. The Lauriault trail was probably my favourite of the three – it managed to balance my desire for complete nature immersion with my need for people around to at the very least hear my screams in case I was attacked by a bear, wild turkey, coyote, etc. 

Emerging into the Mackenzie King Estate so attractively drenched in sweat (we wanted a hot girl summer, right?), I skipped the main stops to refill my water bottle and scope out their accessible flush toilet stall – a novelty in the middle of nowhere. While paling in comparison to the visitor’s centre, it wasn’t coated in giant bugs – so it really surpassed all expectations of middle-of-nowhere accessible stalls. (I know the bugs have dibs out the outdoors, but still. They don’t need to get that close.)

My final stop of the day was at Pink Lake – Gatineau Parc’s most famous, and most instagrammable spot.

While not actually pink, the Lake is a stellar turquoise and apparently shaped like a heart, which somehow makes people stop and think “wow, I gotta get a picture of me here for instagram.”

Not to be a boomer, but you don’t have cell reception out here for a reason – put the phone down! To stand in front of a biologically unique phenomenon, to see centuries preserved in the lake’s weird waters, and to think “yeah I can hold my own in front of this natural wonder” – be humbled!

And one more thing on my boomer rant – what goes on in someone’s head to make them think they are the exception to the “no swimming rule” that keeps the lake’s chemical balance stable enough to be that beautiful? To touch centuries-old plants, literally frozen in time and weird salt-fresh water, and not feel completely existential?

I’ll blog about this some other time, but I really truly do not understand most people at all most of the time. 

Back to the actual reason we are here – disabled hiking!

This accessible lookout was, as promised, accessible, and while the view was okay, there was a non-accessible lookout with a better view built right on top of it!

And you might say “well, there’s still an accessible lookout, right? so what’s there to be upset about?” 

To which I would reply, “yes, there’s still an accessible lookout and that’s great. but the lookout could’ve been raised and given a ramp so everyone has the same phenomenal view. I’m upset because it sends a message that disabled people need to settle with what they’re given, even when they know it could be better.”

Hope that clears that up, hypothetical person I keep using in my blogs (will this guy ever learn!)

An accessible lookout is also incredibly important for Pink Lake because I swear half of that trail was just stairs! Quick little life hack for you: if you double stairs on the way up, it reduces joint impact and helps you stretch some neglected muscles.

Aside from the stairs, this was obviously the best trail Gatineau Parc had to offer. While I did have to give unimpressed stares to gaggles of instragrammers to access the lookouts scattered throughout the trail, they had gorgeous views.

My favourite lookout was actually a collection of rocks on a cliff’s edge – and I unapologetically sat my ass down there for quite some time!

I sat, I breathed, I drank water, and I was present! Most of my favourite hiking moments are during rest stops – when you check in with your body and realize how far you’ve come, and how far there still is to go. You listen to what your body needs and act on it. And you really take in the view.

So, while I knew it would make an excellent instagram backdrop, I did not feel guilty taking up space and time on my little rock. (I’m not a complete monster either, I took photos for a few groups – group photos of people actually here for hiking are precious and I will always take them!)

While a lot of people know that walking is great for arthritis, a lot of people were shocked I chose to and could hike 10km with arthritis!

I can understand where this comes from, but non-extreme hiking really is just walking with more variety. And because my disabilities are all fighting it out to see who is the most annoying, arthritis isn’t the only one interfering with how I move – my ADHD likes to get mad at me for doing repetitive movements, which can make walking on flat surfaces somehow really difficult!

The variety in hiking makes adjusting my approach natural, and gives my brain plenty of other things to do – like stress about bears. And unlike walking, it’s way more normalized in hiking to listen to your body and take care of your needs! 

While people see walking as leisurely, hiking is somehow an extreme sport, and everything from drinking water to stopping to tie your shoes feels less anxiety-inducing. So, take a second to unpack why you think someone with arthritis can walk but not hike, and try to apply that to all different types of activities!

Hopefully, if I’ve been writing right and you’ve been listening enough, you’ll get to a takeaway something like “disabled people get to determine their personal limits and goals the same as everyone else.”

One of the reasons I love hiking so much is because I love pushing my body to its limits – and I loved doing this even before I was disabled!

I can’t explain why I love it exactly, but there’s something about challenging yourself and pushing yourself to your limits that’s very rewarding mentally and physically.

I did it with dancing and singing when I did musical theatre, so to be able to apply this mentality to something that doesn’t put me at an increased risk for a PTSD meltdown was very refreshing!

I think a lot of people with disabilities know what it’s like to be pushed to our limits – whether by ourselves or others – so to do that on my own terms felt empowering and energizing. 

There’s a lot of parallels between everyday disabled life and non-disabled hiking.

We’ll start with my personal favourite: pacing yourself and knowing when to take breaks. A lot of non-disabled hikers know they need to pace themselves and take frequent breaks to rest and replenish, the same way a lot of chronically ill people take preventive measures to prevent disease flare ups, or the same way we try to prevent burnout.

Hiking culture, in its most positive form, is about listening to your body and honouring it – not being ashamed or embarrassed to take what you need to feel and be your best. 

Other parallels include continuing on a hike despite injury – knowing you shouldn’t do more damage but needing to get to safety or complete a milestone, using walking sticks – literally a mobility aid, and intensely preparing for a hike the same way disabled people often have to prepare for social outings.

Before I let you go, a few tips on disabled and solo hiking.

#1: Never go down a random route/do your research!

Never go into a hike unprepared – you need to know how long and challenging the trail is to determine how to best approach it (think pace and what to pack.)

If you don’t know what you’re getting yourself into, you’ll tire yourself out, run out of water, get eaten by a bear, you name it!

For disabled people, this probably seems obvious – so much of our lives have to be planned out to the smallest detail so we aren’t over-exerting ourselves and doing damage.

#2: Listen to your body!

One of my favourite things about hiking is that it forces you to account for your ability and work with it.

If you try to ignore your low energy levels or injury or bad joint, you’ll end up having to either complete the trail or walk back the way you came.

Trying to ignore your disability only results in more pain – embrace it, and you’ll have a way better time.

#3: Be aware of your surroundings!

While I usually say this and mean creepy men following you, this time I mean bears (and also creepy men following you.)

We can all benefit from doing quick area checks, stopping to listen for noises, making noise to scare away others, etc. And when you’re aware of your surroundings, you can benefit – like when I saw that sapsucker on my hike! 

#4: Pack what you need!

This doesn’t mean pack less, it means pack more.

Pack your joint braces, medication, emergency stuff – extra weight might suck, but it usually means you’re carrying something that could save your life.

You never second guess packing a full water bottle – you know what your body needs, so extend that love to your disabilities.

#5: Prepare and share!

Fully plan out your route and itinerary, and share it with your family, partner, roommate, etc – I even went so far as to take a picture of what I wore day of in case we needed an accurate description and missing person photo.

While it might seem like overkill, it’s always better to be safe than sorry – especially when solo hiking. Don’t forget to account for possible delays, identify your closest way to contact emergency services, and research the trails for more information on safety hazards!

And there you have it! We’re packing in, packing out (hiking reference to not littering,) and packing up disability pride month.

Hopefully, we’ll have more disabled hiking content – if not, please settle for just disabled content.

Disabled, disabled, disabled.

The Burnout Blog

June was an absolutely packed month – I launched an advocacy instagram, re-launched my TikTok, made some infographics, did a ton of press stuff, and attended the 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities – but the blog was undeniably neglected, so blog-first fans please accept my sincere apologies. While I believe social media and external press work is super important, the blog became a blog for a reason – there’s just so much going on in disability rights that needs to be shared, boosted, and celebrated. After a month away from blogging (and what a month!) there’s so many topics demanding my attention – but I think now is an excellent time for the burnout blog. 

The most ironic part of all this? Writing the burnout blog is probably going to push me closer to burnout – c’est la vie.

Quick little disclaimer, as is custom: Burnout still isn’t very well understood, and lord knows I definitely don’t know enough about it myself, so please take this blog as it is – a reflection of my lived experience. 

While I’ve always had an affinity for burnout, I’ve only recently realized just how interconnected burnout and ADHD are. I’ve always prided myself on being the “do-it-all” girl: knowing everyone, doing everything, being everywhere – obviously, this is not healthy or sustainable (but god is it fun!) And because I’m so late to the game in ADHD counselling, I just assumed I had a stellar work ethic or internal drive (maybe I do, maybe I don’t, probably not the point I need to make right now.)

One of the ways ADHD manifests in me is almost like a motor: I’m constantly moving on to the next task, idea, project, you name it.  I compare my ADHD motor to nerve blockers (which, for good reason, I have not been put on for fibromyalgia) – because of it, I’m able to do a lot more, but I’m unable to identify the damage it causes until it’s too late. Take the ADHD motor and add my current need for multitasking and packed routines, and burnout can feel inevitable (spoiler: it is not!)

When I first realized I was burning out around the second semester of second year, I took the “work smarter, not harder” approach – and I really thought I was doing something! I tried all different kinds of scheduling tips, methods to analyze information faster, and drilled Muse’s “Supermassive Black Hole” into my skull on repeat (Spotify Wrapped 2022 better pull through!) Shockingly, this approach didn’t work – because I learned to do more in less time, I started to take on more (hello, Carly Fox Disability Advocacy predecessor!)

Still aware of my proximity to burning out, I turned to self-care – or more accurately, attempting to be 100% perfect at self-care (you already know where this is going.) I drank tea, did yoga, read mental health magazines, watched my breathing, listened to frequencies, and meal prepped. And while all of this was great, it was unhealthy! You’re gonna ask, “Carly, how is that unhealthy? That’s pretty much a top 10 list of healthy activities.” To which I’ll reply “Because I made it unhealthy!”

I made self-care unhealthy by being relentless at it, forcing myself into a very intense self-care regime and tuning out what my body actually needs. One night, I put the mental health magazine down to watch Netflix and realized – self-care isn’t just “healthy” activities, it’s about balance and listening to your internal signals. As it turns out, I was just forcing myself into a new type of productivity and overwhelming myself with new tasks in the name of burnout prevention.

My current approach, though clearly imperfect based on my present mental state, revolves around mindfulness. Especially when you have ADHD, PTSD, and GAD, you can do a lot without even realizing you’re doing it. When I remember to breathe and be present, it can feel like snapping out of a blackout period or a coma. I realize that I’m eating too fast or not at all, that I’m not breathing enough, that I’m not actually doing the work I’m supposed to. When I’m in Motor Mode (as I will now call it), it’s like I’m doing everything everywhere all at once (another side note – watch that movie, incredible.) And not being truly conscious or aware most of the time is not my preferred way of living! Just being conscious of how my brain and body works allows me to identify unhealthy behaviours and habits, and work towards building safer routines and processes.

In today’s society, burnout feels dangerously inevitable – and even glorified. Hustle culture reigns as we pretend working three+ jobs is healthy, desirable, or even part of progress. We are expected, from a very young age, to be accomplished, busy, always progressing towards the next goal. We find ourselves in a dangerous pattern of always wanting more – more money, more recognition, more material items, more fame. I find myself saying “once I reach x position or x pay I’ll calm down”, but I’ve realized that once I do, I’ll just want the next step as soon as possible. And when all you can think about is that next raise or promotion or event booking or award, you don’t really stop and appreciate the life around you. And I don’t think my life has ever been better – so to possibly throw all of that away just to get up one more step in the ladder feels like an absolutely terrible deal. 

A lot of burnout risk factors are structurally and systemically determined – we’re operating in systems of oppression and profit that see us as inputs before human beings. But by being aware of the dangerous behaviours harmful systems normalize, we can address them and advocate for change. We can understand that burnout is not inevitable or desirable, but preventable!

For me, the best things I’ve done so far to cope with burnout are determining my non-negotiables, saying no and asking for help, and working on my intuition. 

Learning about non-negotiables has been such a game changer! Essentially, you determine what 100% has to stay in your life – think sleeping, eating, being with family and friends. Then, you determine how much of these non-negotiables you need and carve out the appropriate amount of time. This can be an excellent way to re-examine how you value your time, resources, health, and social life. It can also make you feel more confident in advocating for your needs and setting boundaries.

Saying no is so much easier said than done – but it’s truly an essential skill. To start saying no, you have to start saying yes to yourself – acknowledge you are a human with human limits! You aren’t a machine – you can’t work around the clock, you can’t work at one rapid pace, and you can’t ignore your basic human needs. Once you understand that you are limited in your capacity, extend that compassion to others – shockingly, those around you might also be humans with human stuff going on. And when you extend that compassion, it’s going to create a more empowering environment where others feel safe to set boundaries, help each other out when possible, and acknowledge that, they too, are humans. Groundbreaking stuff, I know. 

An essential part of recognizing you are a human is saying no and delegating. If you’re getting too many tasks at work, delegate or ask for help and call it emotional intelligence, collaboration, or leadership skills. If you’re too overwhelmed with volunteering or community work, build up the team around you by mentoring, allowing younger members to shadow you, and building relationships with others. If it’s with family and friends (the hardest things to say no to!), exercise boundaries where possible and safe – if these people love you as much as you love them, they’ll support you in safeguarding your wellbeing. 

Of course, a disclaimer: Sometimes, we aren’t in a position to say no – especially when we work for a non-livable wage, have dependent friends or family members, or feel desperately needed by our community. As a white woman with stable employment and support systems, I recognize being able to say no is a privilege that largely stems from how I benefit from oppressive systems.

So, there’s your burnout blog. Not comprehensive, but authentic enough and very reflective of a close-to-burnout brain. Actually, I’m not even going to edit this one – burnout brain doesn’t make me feel good, and hiding how burnout impacts me while trying to dismantle stigma feels pretty ineffective. 

Now – where do we go from here? Check this out – I’ll start by setting some boundaries (woah, Carly’s taking her own advice – that’s a first!) 

While I used to aim to have a blog up weekly, I think two regular blogs per month starting in the Fall once I’m back to regular part-time is reasonable. I’ll also aim to prioritize the blog, events, and training over TikTok and Instagram content (because that stuff just circulates forever – the algorithm is terrifying.) And finally, Mondays are off limits – while one day a week won’t be enough, it’s a solid start. 

Now what does this mean for us, [random internet person/loose acquaintance/good friend/solid fan]? Not too much! For the website, I’ve included a burnout watch on the home page and will be uploading my infographics and tiktoks so you can find my content all in one place. For the socials, I’ll clearly signal when my DMs are closed. For events, consultations, and trainings – I’ll probably still keep doing what I’m doing, consider this my weak spot for boundaries (they are just so fun, and I really do find them the most revitalizing advocacy method.)

And with that, the burnout blog is closed. Be kind to yourselves, seek professional help where needed and accessible, and be nice to others! 

Even when life can be a little bit too much of an on-fire garbage can, we can work together to take those flames out (or like, flip the can really fast – I think the science behind that checks out.) 

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.