Am I proud of my disability?

Disability Pride is more than a concept, more than an awareness month to me, even though my feelings surrounding my disability are complicated.

My disabled identity

I’m a woman with invisible disabilities: ADHD, autism, and debilitating chronic pain flare-ups for which doctors are yet to find a cause. My sense of identity as a disabled person changes almost on a daily basis: It heavily depends on a variety of factors, including how my own body feels, the relationships I have with people who support me, interactions I have with strangers, and the experience I have with healthcare professionals.

Growing up, I can’t remember a time when my physical and mental health concerns were taken seriously and investigated properly. I’m a white woman and considered conventionally pretty, which seems to mean to a lot of people that I could not possibly be disabled (this sentence is dripping in sarcasm, by the way).

Doctors have jumped from one misdiagnosis to the next, only looking at the surface and never at how all of my different symptoms could possibly connect. I started having issues with my knees when I was only 11, and no one thought there might be an underlying cause for it. Joint and muscle pains have always been my baseline, and yet I didn’t realise that it’s not normal to always be in pain at least a little bit until very recently. While I’m still no closer to getting a diagnosis of what’s causing the pain, I do sound like a veritable glowstick now that I’m in my 30s, which is a cool party trick.

The rise in ADHD diagnoses isn’t because of some TikTok trend. There is simply more awareness and a shift toward more inclusive diagnostic criteria. And even now, getting a diagnosis is still not accessible to a lot of people.

Due to the significant and highly problematic underdiagnosis of women with ADHD and autism, I was originally diagnosed with severe depression and burnout, like a lot of others. After almost a decade, I came to realise that my overall symptoms actually align much more with being an autistic ADHDer, which, when left without support, can cause severe depression and burnout.

The rise in knowledge and visibility of both neurodivergent conditions is what’s given me the access and language to identify my disability and learn to advocate for myself and others.

The uphill battle

Asking for understanding, support, or – god forbid – accommodations, is more often than not met with unwelcoming and disapproving attitudes. But what exactly does that mean?

It means that, historically, when seeking support from medical professionals, I’ve been carrying. Carrying the responsibility to come prepared with potential diagnoses, treatment options, comorbidity rates and research on case studies, just so they take me seriously and don’t think I’m TikTok-diagnosing myself. And even then, it means begging for comprehensive blood tests, referrals, or treatment that involves more than someone throwing mirtazapine and ibuprofen at me.

It means disclosing that I’m autistic and hearing “Really? You don’t look autistic! Oh well, aren’t we all a bit on the spectrum?” It means talking about the serious impact my ADHD can have on my life and hearing “Oh I get that, I also sometimes forget where I put my keys.” It means repeatedly having your experiences minimised and invalidated.

In previous jobs, it meant being told my flexible working requests weren’t reasonable and adjustments couldn’t be made because “then we’d have to allow it for everyone”. It meant burning myself out, ignoring my disability and limitations, and making myself sick just to accommodate a so-called business need.

I was told my presence was essential for team bonding and if I wanted a quiet space, I should work from an unused floor of the office, away from the team. Everything but letting me work remotely.

Disabled people frequently face the added burden of having to advocate for themselves, justify their need for reasonable adjustments, and fight for access to the resources and support they need. Disability Pride Month has its origins in 1990 in the US and has been celebrated officially and internationally since 2015. The goal has always been to raise awareness for the significant barriers to inclusion that disabled people face, and to eliminate stigma around disabilities. Now, I’m going to hold your hand when I say this: we cannot celebrate disability while denying disabled people access to support and inclusion in society.

No one likes to suffer

It’s at this point that I would like to tell you that, personally, in my own little life bubble, I don’t feel disabled a lot of the time.

Of course it’s incredibly anxiety-inducing and stressful how unpredictable my symptoms can be – it’s so frustrating to make plans and not know if your body can hold up to them. And don’t even get me started on the vicious cycle of having a low symptom day, followed by impostor syndrome, overstretching yourself, developing a flare-up and being hit with the brutal realisation that you’re, in fact, not cured. Having to manage your energy can be a wild ride, and is sometimes referred to as “boom and bust” and is detrimental to our overall health.

And of course I don’t like going through a painful flare-up during which simply holding a pen hurts. Or when my brain decides that the only food I can eat today is rice with shredded cheese but since that’s not a breakfast food, I physically can’t eat until the evening because the thought of different food makes my jaw almost lock shut. Or when my entire processing system seems to shut down because the music is too loud, there’s more than one conversation happening around me, the aircon is humming and someone keeps coughing when there’s nothing to cough about.

No one likes to struggle or suffer. But outside of the physiological experiences, the main reason for why my disability is… well, disabling, is a social one. It’s people seeing me on lower symptom days and developing the expectation that it’s my “normal” when that’s far from reality. It’s not being allowed or able to make adjustments to my environment to accommodate for sensory needs. It’s the consistent self-advocacy to get a fraction of inclusion. It’s the unfair treatment, the lack of support, the exclusive institutional norms and social attitudes that often make day-to-day life inaccessible to disabled people like me.

What am I proud of?

So – what is disability pride? In my opinion, disability pride doesn’t come from being disabled. I can only speak for myself and hope it resonates with you – but I think our pride comes from our own response to being disabled.

Some days, I’m not particularly proud of my body and its limitations, and I’m tired of being in constant pain with no relief. Some days I have interactions that make me feel like a fraud, like I’m not disabled enough. And some days I feel sad and angry at the system for letting me down and making support so inaccessible.

I’m trying to remind myself of what a close friend told me recently: I may not have had the support that I deserve, and I may still have to fight to get support, but it says a lot more about me that I’ve come this far without it. Every day, I’m working really hard to be proud of how far I’ve come despite all of these hurdles.

So – what am I proud of?

I am proud of my resilience. I am proud that I advocate for myself and others. I am proud that I educate myself on disabilities I personally don’t live with. I am proud that I work against discrimination and for inclusion. And most importantly, I am proud of myself for being brave and doing it anyway, even when it’s difficult and scary sometimes.

Want to be a better ally?

You might be wondering, “If disability pride is such a personal experience, how am I meant to be a better ally?” Thank you for asking!

A good place to start is by educating yourself about disabilities, and the challenges that disabled people might face. There’s tons of information out there, in various formats (articles, short-form and long-form video content, podcasts).

Keep the mantra nothing about us without us in mind, and seek out information provided by disabled people – after all, we’re the ones with lived experience. Include our voices, celebrate our achievements and speak up against discrimination with us!

Izzie Micul is the Programmes Coordinator at Safe In Our World. She has a passion for mental health, workplace wellbeing and DEI, and helps Safe In Our World manage the Level Up Programme to improve mental health across the global video game industry.