When we live in a world where disability is often seen as something bad or shameful, it’s a radical act to have disability pride.
I’ve been disabled my whole life.
But it was only in the past few years that I realised what I was experiencing was a disability.
Well, multiple disabilities - autism, fibromyalgia, bipolar and anxiety as well as other conditions for which I haven’t got a diagnosis yet.
Not everyone with these conditions may identify as disabled. But they do absolutely disable me, especially my chronic pain and fatigue. Calling them a ‘disability’ was a game-changer for me. I finally felt like it’s okay if I can’t do everything a non-disabled person can.
It’s okay if I need to rest more.
It’s okay if I need to adjust the way I do things.
It’s okay if I use mobility aids and other assistive technology
It’s okay if I say no.
It’s okay to identify as disabled
Identifying as disabled for me was very empowering.
But there was a lot of stigma around it. People said things like ‘Oh, you’re not disabled, don’t call yourself that’ or ‘Yeah, but you’re not really disabled’.
It was as if, in their opinion, disability was an insult or invisible disabilities were less impactful than visible ones.
A lot of people told me to ‘push through’, and not use mobility aids, like my walking stick and wheelchair.
‘You should be doing everything you can to not use your wheelchair’ someone else told me.
My wheelchair is my freedom machine. It allows me to do things like go shopping with my friends, go to a concert, or go on a trip.
They thought it was shameful and immoral to use them, because ‘I’m not paralysed’, even though ambulatory wheelchair users absolutely exist and are just as valid as full-time wheelchair users.
It was hurtful.
Some even said I could just cure my disabilities if I just walked more. They ignored the fact that walking can be extremely painful for me, especially if it’s for more than a few minutes.
It’s not just painful, I get post-exertion malaise. That means it takes double or triple the amount of time to recover from exertion.
If I overdo it, it can take weeks or even months to recover. And it’s not ‘recover’ like a non-disabled person. It just means my symptoms are manageable enough for me to somewhat exist.
So many people have such poor opinions of disability and a narrow view of disability.
Challenging the stigma
It takes a lot to challenge that stigma, that ableism.
And it’s hard, because we internalise it.
For a long time, I didn’t use mobility aids or emphasise my access needs, because I didn’t feel like I was disabled enough, or the right kind of disabled.
But that kind of thinking is so harmful in so many ways.
If you have conditions that make it harder for you to exist in the world and do the things you need to, you are disabled enough.
You are allowed to use mobility aids, rewrite your rules, and do what you need to in order to live best.
No matter what anyone else thinks. This was a big thing for me to realise. I am so grateful that I connected with some amazing disabled friends.
Even though we have different disabilities, we can all relate to the way the world treats us, excludes us, and the barriers society places on us. I didn’t know anyone who openly identified as disabled growing up, but I do now. And a lot of people around me who didn’t realise they were disabled are now identifying as disabled too.
Disabled people are now being seen and heard. Our stories and voices are so incredibly powerful, and every time we speak, connect and share, it creates a ripple effect.
Finding the joys
A lot of people see disability as a tragedy. There are parts of my disabled experience I’d like gone, like pain.
But being kind to myself, accepting my disabilities, and allowing myself to experience joy and focus on the positives has been a game changer.
I cannot change that I’m disabled.
But I can change how I view the experience. I can change how I celebrate that experience.
Despite what the general public might think, there are a lot of things about disability that are joyful.
Like the feeling of zooming down the street in my electric wheelchair with my other wheelchair using friends in tow, cackling and cheering.
Like the deep connection I have with people who have similar experiences to me. They understand me in ways that no one else can, and it’s so affirming.
And like the power our lived experience can have when it comes to smashing stigma, creating change.
Or just helping someone know they aren’t alone. That they too are allowed to identify as disabled, and can cast off the cloak of shame society places upon us.
Connecting with the disability community and working towards a better future for us all is something that lights the fire inside me.
All I’ve ever wanted to do is make a difference. And I wasn’t always sure I’d be able to, especially with pain.
But I can.
We all can. Our disabled pride and joy will change the world.
Or at least, someone’s world.
About the author
Zoe Simmons is a disabled journalist, copywriter, speaker, author and advocate. She writes to make the world a better place. You can find out more about Zoe on her website, or follow her on Facebook, Instagram, Twitter, LinkedIn or Tik Tok.
