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.
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!)