The Give and Take of Disability

One of the questions I have always asked myself is ‟What would my life be like if I was not disabled?”  Now, I know it’s a stupid question. I know that there’s no possible way of knowing and even if there was, who’s to say that the non-disabled version of me would really be me anymore? But still, I’ve always been curious. I probably watched too much sci-fi and fantasy, but I used to bank so much on the alternate universe version of myself being happier and more popular even if that version of me was the same in every way, just without my disability.

In high school, I blamed a lot of my life’s problems on my disability. I often thought ‟Without a wheelchair, maybe I would be more popular,” ‟Without a wheelchair, maybe my family would get along better because they wouldn’t be so stressed about my health,” and my personal favorite ‟Maybe if I wasn’t disabled, the guy I like could actually like me back.” Was it unhealthy? Absolutely. But it temporarily repaired something in my mind that I didn’t even know was broken. As much as I like to say “I’m just like everyone else, just in a wheelchair,” I’ve always known deep down that my disability has changed fundamental parts of my personality.

And that irks me.

Call me a control freak. Call me hard-headed. Whatever, that’s probably all true. But it really bothers me that my disability has warped parts of my personality from how I think they would and should be. For example, I used to be a lot more easygoing. Everyone I’ve ever been close to can speak to my control issues, but what most people don’t know is that my tendency to be the one “in control” is based on the fact that I feel out of control in most aspects of my daily life. My caregivers, or lack thereof, determine how I spend my days in a certain sense. If I have a caregiver who I work well with, I can have a normal day. If not, I either have to heavily modify my plans for the day or abandon them altogether. So I like being in control of everything I can be.

As I’ve discussed, caregivers can be the best person in your life, the worst person in your life, or anyone in between. No one gets a manual on how to manage them. As a result, I’ve hardened a bit in ways I shouldn’t have. I don’t trust people as easily as I did once. I also learned to cold read people when I meet them. Not quite on the level of Sherlock Holmes, but my skills will probably improve with time. They’ll need to. And I’ll need to get better at trusting my instincts. In my last post, I told a story about a caregiver I had in college. In case you don’t want to go back and find it, the short version is that I had a caregiver that I really liked at first, but she ended up having a drug problem that she brought into my home. After that, it got hard to trust my own instincts, let alone trust anyone else.

The biggest caveat I have from all the lessons I’ve learned is that I wish I could have learned them without forming as many scars. I think about how I was at 18. I was naive, sure, but I was nicer. I wasn’t so judgmental. I was carefree. And in the last decade or so, I’ve changed a lot. Does that mean I’ll be even more closed off in another 10 years? I know everybody was more open to experience as a teenager than as an adult, but I’m tired of learning lessons. Because the lessons I learn usually come at a pretty high price.

I guess that’s the real crux of my issue with the skills I have gained from being disabled. Not all of them have been negative, for sure, but even when they’re positive, they have negative memories associated with them. In my next post, I’ll talk about social isolation when you have a disability. One of the hardest lessons I learned at a really young age is that some people will treat me badly because of my disability and there is nothing I can do about it. This has taught me to be picky about my friends and the people that I choose to spend time with. My standards are pretty high because every time I try to lower them or make an exception, somebody hurts me. That may not always be related to my disability, but I think that friends being hurtful is something that everybody with a disability will have to encounter at some point in their life.

People generally view disability as the ultimate foreign entity. It’s just not something they are comfortable dealing with. There are times when people have invited me to events and not realized that the venue was inaccessible. What do you do at that point? Go home? Complain to management? Complain to the organizers of the event or to the friend who invited you? Sit outside and cry? I’ve done each of those things before, but nothing really helps. These types of experiences taught me to call ahead to venues myself and make sure they are actually accessible. On the other, more malevolent end of the spectrum, I’ve had former friends specifically make important life events take place in venues we both know are not accessible, as a way of not inviting me without being the bad guy (although how that makes them somehow nicer is beyond me). I’ve second-guessed my trust in people a lot because if I don’t, I end up being really hurt.

And when you get hurt a lot, you start to put up emotional walls between yourself and other people. You get cynical. You start to make contingency plans for if and when someone lets you down. And sometimes it’s easier not to depend on people who may do that. I wish I wasn’t like that. I wish I was as open to being disappointed as I was years ago. Because I know there are things I’ve missed out on when I didn’t need to. I’ve said no to a lot of events because I thought I couldn’t participate, only to learn that I could. But I’ve learned from my many experiences that sometimes the emotional cost is too high for me to take that risk.

I wonder if I would have learned the same lessons in other ways if I didn’t have a disability. Like I said, there’s no real way to know. Maybe I would have the same mental and emotional scars as I do now, but I would have taken longer to earn them. Maybe I would be unrecognizable to my current self. One thing I do know is that in a way, my disability has given me skills to make myself a better person. I’m still a work in progress but I’m getting better as I age. I’m also learning more about myself. Back when I was still fantasizing about my nondisabled self’s life, I was pretty self-involved. Had I started this blog then, it would have been full of complaints and injustices. It would have made the people reading it feel like crap because I felt like crap. But I don’t want people to feel that way, even if I might sometimes.

The most important thing I have learned from my experiences being disabled is that actions matter more than good vibes. That’s a big part of why I started this blog. If I can teach people, even just a few, what it’s like to have a disability, maybe they’ll make that extra phone call to a venue to make sure it’s accessible, or have a little bit more empathy when a disabled friend complains about having a bad caregiver. And it’s also what I hope to accomplish as a lawyer. Once I graduate, it’s my goal to help people with disabilities live full and meaningful lives. If I didn’t know firsthand what it’s like to be disabled, I probably wouldn’t care. And this perspective is one thing I’ll always be grateful for.

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2 thoughts on “The Give and Take of Disability

  1. Thank you for starting this blog and sharing your experiences. I think as someone who is not disabled, I didn’t think of things like calling ahead to restaurant or a venue to see if it’s accessible until my grandmother had to start using a wheel chair full time. She stayed with me for a month, and it really opened my eyes to what other people with disabilities go through. A great example was taking her to the art museum in STL. There was handicap parking which we were able to use, and there was a ramp we could use for her wheel chair; however, it was very steep, and I had a hard time getting her up the ramps which I know embarrassed her, and I truly felt terrible that I wasn’t strong enough to get her up the ramp in a swift way. Once we were in the museum though, she was able to sit back and enjoy herself. Once we were back outside and on the way to the car, we noticed someone had parked in the no parking area beside my vehicle, and we had a rough time getting her and the wheel chair back into my car. It’s hard for her to want to get out of the house as it’s turned into a big ordeal for her. Now that she’s back in Alabama, she hardly leaves her apartment because it’s just easier to stay inside rather than “be a bother.” It shouldn’t be this way. Sorry for ranting on your post. All this was to say that I hope your blog does open the eyes of people who don’t have someone in their life who has disabilities and that they can learn and be more aware of the hardships people with disabilities face.

    • Thank you so much for your input, Megan! I really, really love that you read my blog and I appreciate hearing your perspective. I’m all too familiar with the feeling your grandmother has that going out is just too big of a hassle sometimes. I’m sorry she’s going through that!

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