What do you do when you can’t see yourself represented anywhere
Close your eyes and picture the person who’s got it all figured out. The one who’s living the kind of life you want, the one with the answers and the one you look to when you’re trying to plan for your future. They’re the person who inspires you. They’re living proof that it – whatever your ultimate goal happens to be – can be done.
Maybe it’s a family member or a close friend. Maybe it’s a celebrity or a content creator online.
When I close my eyes, there’s no one there to picture. I have very few friends that are disabled, only one that I even talk to on a regular basis, and we’re not really in the same position or after the same things. There isn’t a celebrity with Muscular Dystrophy to inspire me. Sure, there’s a handful of disabled actors or writers I can think of, but I can’t see myself in any of them.
As if that’s not frustrating enough, I can’t even think of a fictional character I can relate to. Not beyond personality traits or common human experiences. For the big stuff, I am completely on my own.
I have a lot of things I want to do with my life. A lot of things I want to be. I want relationships, travel, and adventures. Projects that excite me and a lasting, stable career. I’m the kind of person who plans things. Big time. I need to know how to get from point a to point b. For pretty much any decision I make in life, I make a list, I research, and I try to consider every possible angle and every option. Is it a little over the top? Probably. But it’s how I function. It’s how I get shit done without my anxiety taking over and keeping me in bed 20 hours a day.
I’m getting to a point in my life where I need to seriously start to figure out where I’m headed and how I’m going to get there. It’s time to start planning – scratch that, I should already have a plan. Or I feel like I should. Every day I feel more and more behind, which is terrifying.
One day, I’d really love to have my own house or apartment. I’d even be happy to have a roommate that isn’t my mom, not that my mom isn’t a perfectly lovely mom and great to live with. Most girls can ask their parents how to move out on their own. What to do, how to plan, how to make it work. But my mom didn’t move out as a disabled woman who requires close to round the clock care. She doesn’t have any more information on the subject as I do. If I ever figure it out, she’ll be figuring it out along with me – which don’t get me wrong, I appreciate! It’d just be nice to have that roadmap handed to me like it is for everyone else.
And it’s not just moving out. It’s my entire future that feels murky. Things like how to find reliable home care you can actually afford or how to find someone to travel with you when your current (and only) caregiver is unable to. It’s how to find and keep a healthy relationship when you have a disability that affects every aspect of your life – a fact that makes most people uncomfortable.
None of this is impossible, or at least that’s what I’d like to believe and am telling myself. But it’s hard, and not like annoying hard because I’m lazy, but like overwhelmingly scary, I-think-I-stopped-breathing-for-10-minutes hard. This isn’t me throwing a pity party either, even though I’d understand if that’s what you’re thinking.
I once read a quote, and I so wish I could remember where I saw it because I think about it all the time, but it was basically this: You cannot be what you cannot see. Being disabled is messy and complicated, and it makes every single thing feel so much harder than it ever should be. And yeah, it’s a little depressing sometimes.
It’s isolating and it’s infuriating because it doesn’t seem the slightest bit fair. It’s hard to do something you’ve never seen anyone else do. Sometimes it doesn’t feel like you CAN do it. Why are things so simple for my friends and I’m stuck with what feels like a never ending challenge? Like I’m trying to put together a puzzle but I’m missing pieces – only I can’t tell how many or which ones and every time I find one I lose 3 more.
Just once, I’d love to know what it’s like to have a question with a readily available answer. I’d love to be able to just call up my friends or family, ask them how they do the adult thing, and know that I can just follow their lead. Things like getting a good job or living on your own are already so complicated when you’re disabled, but when you have no idea what to do and no one to ask it’s exhausting. Every single day.
I’m not giving up, and I hope that I’m not giving that impression to anyone! I’ve got a part-time job that will (hopefully) turn into a permanent full-time position. Right now, I’m just kind of taking it one step at a time. That’s all anyone can do, I guess. Somewhere in the world, I know there are people who have the answers I’m looking for. My goals are achievable, even if I haven’t figured out what steps I have to take yet. Someone, somewhere has it figured out and maybe one day I’ll meet them! Or maybe 2018 will be the year we get some meaningful, truthful disability representation so I’ll have someone to picture when I close my eyes and think of who inspires me.
But for now, I’ll keep wandering in the dark trying whatever I can for as long as I have to until one day the light turns on.