Disability is a tricky thing.
No one would say that there was a hierarchy – we would say that everyone was equally valuable.
But the truth of the matter is that some conditions are sexy – they get money and press and attention and extra resources and walks and big, multi-million-dollar foundations.
And other conditions are rare.
Other conditions are quiet.
Other conditions get passed over and missed out.
Now, please do not misunderstand me. I know what a lot of these ‘sexy’ conditions are like and have known enough folks with them to know that I don’t actually want to have cancer or be paralyzed or experience horrible burns or anything like that.
It doesn’t change the fact that I as a teenager I dreamed that I could have that kind of support and understanding.
So that social workers would come by my bedside and ask me to tell them how I was feeling when my mom was out of the room and I could be honest (like they did for the teen next to me who was in the process of being diagnosed with cancer).
So that foundations would fly my family somewhere cool for an incredible vacation (like the trip to Disneyland that teen eventually got to take with her family).
So that people would hear what was wrong with me and understand just how life-disrupting the whole thing was.
You get kudos when you tell someone you’re a cancer survivor – as well you should – but no one really knows what to say to you when you say you had a birth defect and thirteen operations as a child and no one knows why you’re sick enough to be in a wheelchair now.
As a kid those are hard things to wrestle through. As a kid with social delays it’s even more complicated. But I am slowly learning some things that are making it easier:
I don’t have to wait for the systems to make a space for me – I get to make my own space.
One of the things that’s difficult to hold onto as a person with a disability is your autonomy and agency. Let’s face it, there’s an awful lot of things I can’t do for myself. I can’t get meat out of the freezer in the basement; I can’t make my own bed or change my sheets; I can’t clean a bathroom; some days I need help showering; I can only drive short distances, and even then, only on my good days; the list goes on and on.
But I do still have a voice. I can still contribute in other ways to community. And as I begin to be intentional about bringing what I can to the community I am a part of, I create my own space to be me within.
Our ‘value index’ is broke in our society – but because I’m forced to be aware of that, I can opt out if I want.
We all kind of realize that this is true – that the way we value some people over others because of their class, financial success, fame, intelligence or power is unhelpful at best and more frequently incredibly damaging. The impact of things like the fashion industry on the way that we view our bodies and wardrobes or the incredible pressure some feel to buy a house or have a certain type of relationship or ‘succeed’ in any number of ways can be seen in our skyrocketing rates of anxiety and depression, relationship failures and social challenges.
But as someone who literally cannot meet the ‘expectations’ of value, I have the chance to opt out – to walk away from it all and decide to make my own rules, figure out my own expectations, use my own, personal values to determine what success is going to look like for me. Which, if I go with it, gives me some incredible freedom!
Ultimately who I am is all I have to give.
I don’t have the energy to try to be someone I’m not. I can’t put on a show for someone, muscle my way through one more task to impress someone or pretend like I have it all together when I need someone to physically support me if I’m going to walk down five steps.
But it turns out that’s okay.
Because none of those were the reasons people liked me in the first place. None of those were the things that had made them be my friends. And the more my disabilities force me to be honest, the better I am at being me, and consequently the more I have to offer the world.
So would I still like it if my disability had a name? Yep!
Would I still like it if people knew what it meant – could understand what the reality of living with it was like and knew instinctively what kind of help I might need? Well, that would be nice.
But I have realized that I don’t have to be trapped or penned in by these limitations any more than I need to be trapped or penned in by my disability itself. It will do what it will do, and I don’t have much say over that, but if I’m willing to lean into the reality in front of me than I will discover all sorts of benefits to being fully and authentically me – disabilities and all!