Claiming Crip

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It's Not About Want, It's About Can

Over the past few days I’ve had a number of conversations about the future. Not the future six months from now, but the real future. What am I going to do with my life? Where am I going to live? Should I go to law school? Grad school? Get a job? How am I going to make it all work? These are daunting questions for any 22-year-old. There daunting questions for anyone really, but for me there especially complicated. When it comes to questions about the future, I have learned that it is not about want, it’s about can.
What I mean is that the question is not so much, "where do I want to live after graduation?" but rather "where can I live after graduation?"
I have to think about where I can live the most independently. I have to think about the availability of accessible housing. I have to think about the services offered in a particular state. I have to think about accessibility of public transportation. I have to think about accessibility of infrastructure. The list goes on and on. I have to find the place that allows me to check the most boxes, and has a job.
Miami, for example, I’m starting to realize, would never really work. I’ve lived there for the past four years, and all my attempts to find accessible housing have come up empty. The public transportation system doesn’t get you enough places to be a viable option for your only source of transportation. In terms of supports, from my understanding, Florida really isn’t the best. So you see, the conversation stops being about want, and starts being about can. I can’t just think about where I want to live based on what cities I think are cool, or even where I get a job. It is so so much more complicated than that.
I’m seriously worried about whether I will find a job, as is any recent or upcoming grad, but I’m also worried about how I am going to pay for the personal care services I need to survive. It’s so complicated. Success is so complicated. Growing up and being successful terrifies me sometimes because if I make more than a certain amount of money I will get no assistance in paying for my care, and in order to pay for my care on my own I will have to make a lot more money than that. So what am I supposed to do? How am I supposed to make these decisions? How am I ever supposed to explain this to people who really believe that if you work hard enough, and you want something enough it will all work out?
How am I supposed to explain that all things being equal my sister’s in the goal zone while I’m still stuck back on the hundred yard line? How am I ever supposed to explain that? It’s not just about working hard, it’s about realizing that there are a different set of rules, a different set of concerns. It's about realizing that sometimes it doesn't look like we are even playing the same game. It’s about realizing that it is so expensive to live with a disability, and yet in order to get any help you have to stay poor.
Sometimes when I start to think about these things, I get so stressed out I can’t breathe. Sometimes I look at these things and I understand the 70/30 split regarding disability employment. I look at this, and I get how 70% of disabled people are unemployed. I get it because finding a job is hard enough, but add to it figuring out housing, transportation, and care needs, and it sometimes feels impossible. I’ve met so many people here who make it work, and that gives me hope, but I’ve also learned that it is far more complicated than I ever imagined.
For me, the decisions I make about my future will more than likely carry more weight than the decisions made by most of my friends. Moving again five years from now just isn’t in the cards for me. I need to know with some certainty at 22 the plan for the rest of my life. I need to know when I take a job that I will be able to get the benefits I need to survive. I need to look my life and not make decisions in terms of what I want, but what I can have.
It comes down to choices again, where other people have seemingly limitless options, all with their pros and cons, but that all work equally as well , I have two, maybe three painstakingly researched options that will give me the best shot. It's about so much more than the job; it's about where I can actually imagine living, and having the most possible choices and most possible freedom.