I came across my friend Alyssa’s reel last week about disability and immediately knew that I wanted to write a post based on it, because it hit me right in the gut when I saw it. The text of her reel said “Actually… my disease does define me. And that’s ok.”
July is Disability Pride Month, so I can’t think of a more perfect time for this post. Growing up with a disability when I was younger was a whole different world than it is today. I basically grew up right along with the Americans with Disabilities Act, so things were starting to change, but it was still early. And without social media like there is today, it was much harder to find a community of disabled people to connect with and talk to. I feel incredibly lucky that I had my sister, but a community of two is pretty small. I knew only a handful of other disabled people, and wasn’t really close with any of them.
That’s not to say I had a bad childhood – truly, it was the opposite. I had supportive parents who were my constant advocates, and the most incredible group of friends who I’m still close with today. While I knew I stuck out as “the girl in the wheelchair” (or “the girl in the Barbie wheelchair” when I was really young!), I never felt left out. I had friends, and we went to the movies and had sleepovers and I did what every other kid does.
But I think because I didn’t know many other disabled people, there was this underlying constant narrative of not wanting to be defined by my disability. When you’re young, you don’t want to be different – sticking out doesn’t feel like a good thing. So I wanted to blend in and feel as normal as I possibly could. I didn’t focus on my disability, and I didn’t want other people to, either.
Fast forward to the present, though, and I feel very different about my disability. This isn’t a change that happened overnight – it was a slow, gradual shift. In the last few years, I’ve connected with SO many disabled people, both online and in-person, and it really changed how I look at myself and my disability and others with disabilities. Part of the shift, I’m sure, is also just the confidence that comes with age. I’m not a 13-year-old hoping to fit in, I’m a 32-year-old woman who is confident in who she is and what she needs. Honestly, it feels pretty great.
Now, I’m happy to claim disabled as part of my identity; I’m not ashamed of it. And I’m also much more open about the accommodations that I need, and more willing to ask for help. If there are no accessible parking spots available and our van has to block a lane of traffic while I get loaded or unloaded… that’s too bad. I’m sorry if people are inconvenienced, but perhaps it’ll make them more aware of the lack of accessible parking spaces in the future (or make them feel guilty for parking in those spaces for “just a minute” to run into a store). My disability isn’t to blame, and I can’t be held responsible for the lack of accessibility in the world. I have nothing to be ashamed of.
A few years ago, I was using the restroom in Starbucks. I can’t do this independently, so my mom was in there with me, and because public restrooms aren’t always the most accessible, it takes me longer to do what I need to do and get in and out. (Although – Starbucks restrooms tend to be some of the most accessible, so much so that if I’m out and about I’ll seek out a Starbucks bathroom if I have to go!) Because I was in there for longer than someone felt was necessary, they pounded on the door and LOUDLY screamed through the door asking if I was alright. The me of my childhood would have been MORTIFIED by this. It was like someone was flashing a spotlight directly on me, with an alarm blaring out “Disabled! Disabled! Disabled!” over and over and over. The me when this happened, though, just screamed back “I’m fine!” through the door and laughed it off. Now, don’t get me wrong – the person should not have approached the situation that way. There are ways of making sure someone is okay without getting the attention of an entire store of Starbucks customers hearing you. But it didn’t embarrass me, because my needs are my needs, and I’m not apologizing for them.
So all of this is to say that just like Alyssa, I too am defined by disability, and that’s ok. Does that mean I’m solely and completely defined by my disability? Of course not! But it’s part of me, and it’s inextricably wrapped up in the rest of my identity, too. I’m comfortable, and confident, claiming disability as my identity with pride. That’s what my #DisabledGirlSummer is all about. Happy Disability Pride Month!
This Post Has 2 Comments
I loved your story…
You and your sister are remarkable women..
I pray for you every day, (well in my night prayers), that you two find some relief
and that both of you continue to live and enjoy life as much as possible!
I hope I said that right?…
I enjoy reading your blog..
May God continue to bless you both..????
Thank you, Leslie! You did say it right, and I appreciate your prayers (and that you read here!).