A Personal Essay About Disability Written By My Personal Hero

The word “disability” is a pretty effective one, as far as words go. It manages to convey both a technical definition (“lack of adequate power, strength, or physical or mental capacity; incapacity”) as well as a general sense of the lack of glamour or romanticism found in the world of disabilities. Additionally, and perhaps more to the point, it is a buzzkill. Frequently a conversation-stopper. Experience has often led me to wax philosophical about the reasons behind this sort of discomfort; for example, perhaps it is the fact that we tell children not to stare or ask questions that gives them a poor foundation for later on as “don’t stare” becomes “don’t look” which becomes “don’t see.” Maybe it’s because we as a society are preoccupied by both body image and quick fixes and disabilities are an affront to both. Or perhaps most likely of all it is because disabilities present a minority status that is more objectively negative than others – it is in many ways both an identity and a regrettable situation that people cannot be sure how to react to. Regardless of any or all of the reasons, it is an aspect of myself which I have frequently wanted to leave behind and dissociate from, but it’s still a constant and undeniable shaper of my life, relationships, and outlook. For better or worse, it’s with me all the time.

Maybe it would be best to start by describing exactly how it affects me physically. I have nemaline myopathy, a form of muscular dystrophy (which is actually a group of diseases, not a disease itself). It is a rare genetic disorder that affects the shape and distribution of protein in my muscle cells, making it more difficult for them to develop and grow. This results in significant weakness in my skeletal muscles: legs, arms, face, trunk and lungs, but not in smooth muscles such as in my eyes, heart and internal organs. Although in one sense the disorder has only one effect (muscle weakness), this in turn creates many others such as skeletal deformations like scoliosis, some looseness in my joints, difficulty in doing things such as walking, breathing and enunciating, decreased ability to fight off diseases, and difficulty putting on and maintaining weight. This last one might seem like a bonus to anybody who’s seen ten minutes of commercials in the last twenty years, but in this case I don’t think you could argue that I really got lucky. I have the same difficulty gaining weight that others have in losing it, and I think it probably invites similar insecurities, comments, and obsessions with calorie-content. The slowness with which I have to eat plus the intense effort it takes to move around means that I burn up calories much faster than I can replace them. Additionally my low muscle tone extenuates my thin appearance. 

Although it was apparently clear that there was something different about me when I was born, I wasn’t diagnosed until I was about eighteen months old. This was because nemaline myopathy is rare enough that it’s not on the standard gamut of tests. I sometimes wonder if finally figuring out what the deal was wasn’t just a little bit anticlimactic in some ways because once you know what it is, there isn’t much you can do about it. There’s no treatment or medicine or anything for it, just eating right (as well as often), exercising and trying not to get sick… probably the least exciting or original medical advice ever given. Still my mom (always my most active caretaker and advocate) took all the precautions she could think of, including signing me up for physical, occupational and speech therapies and biannual specialist doctor’s appointments just to keep an eye on things. 

Mary & her mom

As I got to be old enough to go to school, she had some more tough choices to make. She had to consider things like the stairs in my school and on the bus, the physical roughness, social insensitivity, and potential germy sickness of the other kids, the danger of the playground and gym class, the weight of doors, backpacks, and books, as well as the length of the school day and the understanding of teachers and strangers. I tell you all this to make it clear why she chose to have me attend school with a full-time one-on-one aide. This is a necessary explanation because for quite a while I was unwilling to make the concession that it was an indicated need, at least to start with. Not that I can truthfully say having an aide really bothered me at first. As a five-year-old I knew there was something different about me compared to other kids, but I didn’t think about it much more than that. I think one of the most interesting things about children in general is their acceptance of whatever their experience is as the definition of normal. I mean on some level I knew that other kids could do things I couldn’t and I could see that they didn’t have aides or anything, but I accepted that without too much question. It was what it was. 

But despite this, the feelings of being smothered, separated and uncomfortable because of the presence of the aide grew over the years and especially once I left elementary school for intermediary school (in my district this was grades 4-6). Maybe I should explain that a one-on-one aide is an adult hired by the school district to accompany the student everywhere on every school day. It gets old. This was true even when I had a good relationship with my aide, which I frequently did – I had the same aide from third to eighth grade; we became very close and still get together over breaks. I was always pretty clear that it was the general fact of the aide, and not the individual person, that drove me nuts. What an aide does depends on what the student needs, and in many ways, I didn’t need much. I never needed extra help with school work and have always had an aversion to situations in which I might get pummeled, such as crowds and dodge ball games. But the presence of an aide often made people think I needed more help than I did, like when some teachers assumed the aide helped me with my tests and homework.

As I got older and developed more of a social consciousness, I began to notice that other people, teachers and students alike, behaved differently around my aide. The aides were, after all, adults and therefore authorities. People would address questions and statements regarding me to my aide in front of me. Not “what’s your name?” but “what’s her name?” Substitute aides were the worst. For “confidentiality reasons” which I still don’t understand, the school district could or would not give substitute aides any information about me besides my name. They understandably had no idea what sort of disability I had and many assumed an intellectual or developmental one. When I was in middle school one who had made this mistake introduced herself by saying sweetly, with her hand comfortingly on my shoulder, “My name is Mrs. Feely, can you say ‘Mrs. Feely’?” We did not become friends. Others who better understood the situation were still worried about leaving me alone for any amount of time, including when either of us had to use the bathroom, because they were afraid that if something happened to me in that time they would lose their job or incur a lawsuit. This sort of thing, combined with teachers thinking I got help with my work, was the most frustrating thing of all for me. The best way I can think of to describe it was that I felt like it negated me in some way. I felt like I did not get credit for the things I could do, like my school work, handling a trip to the bathroom or five minutes alone, so sometimes I felt like less of a person.

But these were just the worst days and many positive things did come out of my years with aides. For example, I learned to view the small society of school in a critical way. By this I don’t mean judgmental, although I’m sure that was sometimes the case, but rather questioning: What did people think of me?  What made them think they knew anything about me? Were they right? Did I do the same thing to them? I couldn’t articulate all of these questions or their answers but they were the sort of considerations that came to build some of my world view. Looking back, it’s really not surprising that I became an anthropology major. Being somewhat socially separated from others but very interested in them enabled me to see both them and myself in a different way. I realized that if I assumed that people were judging me, I was actually judging them. I needed to cut people some slack and allow for the standard awkwardness and life complications experienced by everybody.  

I finally won my campaign to lose the aide in tenth grade, so my last two years of high school were a solo event. At first it was surprisingly nerve-wracking. I was jittery that first day of eleventh grade, the same way that I feel before a plane takes off: in theory I know that everything is fine and this is where I want to be but I can’t shake the feeling that this couldn’t possibly work. But it didn’t take me long to embrace my freedom. I was thrilled to have to ask for help when I needed it, instead of always having it there when I didn’t want it. I’m really glad I had these two years of independence, especially because I think otherwise the first day of college would have been literally overwhelming. Now I’m able to really appreciate my freedom without being too freaked out by it.

As much as I learned about the general concepts of identity and human interaction and the specifics of disability through my school experiences, I think I would still be lacking had I not attended summer camp. From the ages of seven to seventeen I went to the Muscular Dystrophy Association (MDA) Summer Camp for a week out of every summer. Unlike the aide situation, which I was initially accepting of and grew to resent, I intensely did not want to go to MDA camp at first. I wanted to go to Girl Scout camp like my big sisters, even though I never especially liked being a Girl Scout. That wasn’t really the point. The point was I didn’t want to go to cripple camp where you sit around and talk about cripple things all day, I wanted to go to big girl camp where you… I was never really clear what you did there. All I knew was it was probably way cooler than MDA camp. I just couldn’t believe that something could be both fun and disability-related. Fortunately I lost that argument (which I know is hard to believe with my intractable logic). 

Me & Mary getting
ready to zip line!
MDA camp, 2008

What I found there, the first year and every year after, was a broad range of people that I would otherwise never have had the privilege to meet. I found people who handled their disabilities with such grace that you could never say they were impaired. This was the case with my friend Maya who was a counselor at camp and now one of my best friends. She does not have MD but rather a rare form of arthritis that frequently causes her intense pain as well as a host of other complications. Even so she meets every day and every person with liveliness and warmth, not just in spite of her pain, but even because of it. I don’t think most people would blame her if she were bitter and resentful, but she holds herself to a higher standard and instead finds in her pain a source of compassion for other people. She literally inspires me to try to be a better person. 

Me & Mary at
MDA camp, 2003

Meeting people such as Maya has also helped me keep my own problems in perspective. I met people with other forms of MD who could not walk, feed themselves, breathe independently or move their arms. Every year, MDA camp offered me a whole new context through which to view my situation. Instead of the deficit model I often encountered at school, where the focus was frequently on what I could not do, camp was a different playing field altogether. Since everybody there had disabilities, it was like they canceled out and we could all just be people. I realized that I was not a victim, and in some ways neither were people with more severe disabilities. Especially not when they have such strong minds, hearts, and personalities. 

On the flip side, I also met people who I did not think handled their disabilities as well. There were some who used it as an excuse not to engage in life, limiting themselves more than anybody else could have. Some seemed to consistently view all their problems as stemming from their disability, and to firmly believe that if only they could walk, or walk faster, everything would be better and they would be happier and more complete people. Yet how often do we meet people who are unhappy, dissatisfied or frustrated, even with their own bodies, despite their miraculous ability to walk? Clearly this, or any other “quick or easy” fix, is not the answer. I came to realize there are not so much disability problems and able-bodied problems, just human problems, experienced in different conditions and to different degrees by everybody. In other words, there really isn’t much difference between me lamenting my inability to jump or a friend lamenting her inability to look like Catherine Zeta Jones. Both are virtually unattainable and, even if attained, largely unhelpful. 

It’s impossible to know how my life would be different had I been born in a different body, but I think that being in this one has enabled me to meet people and learn things I might not otherwise have encountered. Although it’s easy to say this, and difficult to live it and appreciate it every day, I know that I have plenty to be grateful for. But this is not a Lifetime movie. Having a disability is not like overcoming an obstacle and moving on, it’s something that must be met and dealt with everyday. Yet even so, I think the experiences I’ve had and the people I’ve met have made it possible for me to make some progress in how I deal with it. It is a part of me but not the sum total and focus of my life.

Is it clear yet why Mary is my hero? If not, you can take a look at her spotlight from last year...


Love,
Maya