What Does Disability Mean to Me?

For my first real post I am going to copy and paste an essay I wrote this past July, seemingly out of nowhere. I'm currently finishing up an independent study where I spent a year planning a disability awareness workshop for the Department of Family Studies & Community Development at Towson University (isn't that a mouthful), Disability & the Human Service Worker. I had been doing a lot of reading and thinking about ableism so that I would feel competent about being in charge of this HUGE undertaking. And then this just came out...

I have shown it to quite a few people already and have gotten such varied responses as "it's too anxity" and someone else emailed and told me they appreciated the humor. I know it's more than a bit long, but if you can get through the whole thing, I'm curious to hear what you think of it.

I was getting ready to get in the shower when a seemingly random train of thought interrupted the mindless spacing out I engage in several times a day. I think I like myself better (at least somewhat). I think I’m more confident, more self-assured and more self-aware. I think, at least for the moment, it doesn’t bother me that after 6.5 surgeries (having my hammer toes straightened wasn’t real surgery) I’m going to have to bring my crutches with me when I go into the city on Friday with my friends.

Why? I think I have a better sense of where I come from. Every person has a culture. Even if your ancestors came to America on the Mayflower, you have that. Every culture has a heritage, symbols, customs. Children are bathed in their culture from the moment they are born. Our parents can’t help it; it’s usually so ingrained that it’s second nature. You may not know why you do some of the things you do, but if you go back a few generations a seemly frivolous habit may have used to carry a quite serious connotation.

What happens when you grow up in an environment completely devoid of your culture? You grow up lost—without a strong sense of self. With no one to look up to, to aspire to, to emulate, you try to emulate those in the dominant culture that surrounds you. It doesn’t work. It’s like a square peg trying to fit into a round hole. Trying to find your own way, with no one like you to guide you, is like climbing Mt. Everest. A select few manage to come out unscathed, but many others die horrible deaths—in this case the death of their sense of self. For many, it seems so unattainable that they just give up; they never even try.

I grew up with a very strong sense of what it meant to be Jewish. I went to preschool at my shul; I went to a Jewish camp for 6 summers, to Hebrew School for 12 years. I was the co-president of my high school youth group for 3 years and still work for them on and off whenever they need an extra hand. For the last 9 years my mom has worked for my shul. For the last 3 years she’s taught Hebrew school. Even if I wanted to deny that I was Jewish (which I never would) I couldn’t. It would be too hard to escape.

But my Jewish heritage isn’t my dominant culture. It’s not what I’m judged against at first glance. If I didn’t want someone to know that I’m Jewish then they’d never have to, I just wouldn’t tell them. But, um, deny the cerebral palsy? Virtually impossible. I’ve traveled halfway across the country and had the best medical interventions money can buy, but the waddle is still too obvious. And the 29 or so scars I’ve got? I’m not about to cover them all up when the heat index is over 100. “What happened to your knees?” I get often enough. My rectus femorus transfer scars are my most prominent.

“Nothing,” I say to avoid the question. It’s not a lie. It’s not my knees that are messed up after all. It’s my brain.

Very few people know what it’s like to be me. There have been people who have traveled through my life very closely with me, like my mom, but at the end of the day, no one stares at her. She can drive, she can use a regular can opener, she can get up from the middle of the floor like it’s the easiest thing in the world. I can’t emulate her. So I’ve been lost for years. I used to deny my disability. If I wasn’t around other people with disabilities (the special ed kids) then maybe people wouldn’t notice? Foolish thoughts, but I was 7. In high school I directed my anger at it. I didn’t have any friends because of my disability. I don’t have a boyfriend because people are scared of me. I couldn’t get rid of it; I realized I couldn’t deny it anymore, but there was no one around to teach me how to embrace it. So I hid on the couch and watched tons of TV.

Most of what’s above didn’t come to me until I put my fingers to the keys, so to speak. It just poured out amazingly like a tsunami out of nowhere. What came next in my train of thought was, what is disability? If it is my culture like I am proposing, then what does it mean to me? Everyone attaches their own meanings to their culture. Ask 2 Jews what it means to be Jewish and you’ll get 2 completely different answers. Ask 2,000 Jews and you’ll get 2,000 answers. Well, 3 things came to mind. They’re not in order of importance, being that I don’t know what that order would be, but rather in the order that they popped into my head as I was in the shower.

Disability means being creative. It means figuring out how to take my knee immobilizers off after my dad put me to bed, even though the straps were too far away for me to reach. Of course I got caught more times then not, I was 5, but I give myself an A for effort. (For the life of me I couldn’t figure out how to sleep unless I was all curled up.) It means tricking people into believing that I didn’t know how to walk up stairs (I was 4) or that I couldn’t walk without holding their hand (I was 6) even when I could. I call those creative solutions for doing something easier. It means figuring out when the lift is broken that a mounting block can be used to help climb up to the even higher trunk, because mounting blocks are still WAY too low to mount a horse from. It means realizing that I have to take my crutches to class because I’ve decided to walk and I’m running late and the quickest way to get to the Center for the Arts from Millennium is to jay walk. The only problem? They don’t put curb cuts in convenient places to jay walk and I don’t do curbs. Well, I do with crutches.

Disability means being a fighter. There is the more obvious fighting, like fighting to go to your neighborhood school or fighting with insurance to get more physical therapy visits, but then there is also the ever present fighting with yourself. The guilt over not going to the gym that turns into the worry that 6.5 surgeries are going to be for nothing if I don’t get off my butt, which then eventually turns into dragging myself to Burdick gym. You would think the fight would end there, but every so often I get down on myself and feel extreme bitterness about the fact that I have to spend 4hrs at the gym every week. Yeah it’s great that I can now do 175 crunches, that today, for the first time, I did 35 push-ups and when I started I could barely do 10. It’s great that at my best I could run a 13:20min mile (right now it’s about 14mins) when 5.5 years ago my mom swore to me I’d never break 20mins. But none of the other gym rats I see at the gym all the time are there because they have to, because they’ll become completely dependent on a wheelchair if they don’t. They’re there because they want to. And that’s a big difference.

Lastly, disability means being resourceful. It means knowing everyone, and therefore by extension everything. It means never burning your bridges because I never thought that I’d need my old Occupational Therapist, whom I haven’t seen (professionally) since I was 9, to help explain to a very ignorant 9th grade science teacher just why it is almost impossible to do graphs. It means knowing that I am never told about 90% of the services I’m entitled to (because none of those services are funded) but also that because I know absolutely everyone, all I have to do is start asking around and eventually someone will get to the bottom of it and come back to me with the answer that I need. It also means knowing that no one else is told about 90% of the services that they are entitled to either, so I have to keep an ear out to save someone a lot of trouble if I already know where to send them. It’s the least I can do.

What does any of this have to do with me liking myself better? Well I still don’t have anybody to emulate, but I think I am somehow managing to gain a sense of self regardless. Maybe I’ll come off Mt Everest alive (it’s been touch and go if you catch my drift). Maybe also, (I hope) I’m becoming someone other people want to emulate, and that’s a pretty cool thought to ponder.