I’m Disabled, but My Body Still Belongs to Me

Mar 11

To so many people in my life, I seem like the epitome of an independent woman: sassy, cheeky, and maybe a little too sarcastic. I'm a Jersey girl at heart, and even though I no longer live in my home state the straightforwardness I learned there has never left me. Through my years of activism and advocacy, I have learned how to handle myself, but the truth is in a practical sense, I cannot take care of myself.

I have had cerebral palsy my entire life, and I use a wheelchair as my primary means of transportation. While I'm tough and independent, I cannot get dressed, make food, or get out of bed on my own. To do most daily activities that the average able-bodied person takes for granted I need help. This means I live in an interesting world. I am a grown woman, who unfortunately still has a bedtime. My life is often lived on somebody else's schedule. I don't have much flexibility in when I get up when I shower, or when I go to bed. Privacy can sometimes feel like a foreign concept to me.

Strange things happen when you need help to do things that most people take for granted. For some reason, people often think that your need for help gives them the right to know every detail of your medical history. Able-bodied people often seem to think that they have the right to ask me how I do basic tasks like taking a shower because I do it differently than they do. Strangers wonder how I get dressed, get in bed, and sometimes even ask me how I engage in intimate activities, such as sex My routine and way of living may be different than most people's, but that doesn't mean I have to live my life like a zoo animal constantly on display. I may be disabled, but that does not mean that my body exists for public critique and consumption.

Blatant awkward questions from strangers are one thing, but the attacks on my right to my own body are often more a bit subtle, and way more insidious. The real danger comes from the people who help me, and from doctors and therapists who put the comfort and ease of others in front of my health and safety. There is a prevailing attitude that because I need help, the people who are helping me should have a say in what I do with my body and that it is my job to make my body less obtrusive and easier to work with for my carers, with very little regard to how this affects me as a person. Being physically disabled and needing help means my body is so often treated as an object, whose presence is to be molded in a way that is most convenient for everyone else around me, with no consideration for the permanent damage left behind.

Fat-shaming under the guise of concern for health is problematic across the board, but it takes on an even more terrifying dimension in the lives of disabled people who use care in their everyday lives. In my life, fat-shaming isn't just done under the guise of helping me be "healthy.” My weight and the status of my body are intimately tied to my very survival. I've gone hungry because that was easier than dealing with the judgment of having to ask another person for food. I will often restrict liquids in order to keep myself from needing to use the bathroom in places where I don't have access to the assistance I need. I remember being told by a physical therapist when I was getting ready to go off to college that I better not gain the freshman 15, or nobody would be able to take care of me. My body is seen as a problem for other people to contend with, and therefore is considered appropriate or even encouraged for other people to define what my body needs to be.

There is a sense that because I can't take care of myself other people have more rights to comment on and make decisions about my body than I do.

For most of my life, I have had a complicated relationship with nourishment. I have an extremely complicated relationship with food that dates back to my early adolescence. I preach and believe in self-love, but often struggled to truly love my body in a world where it is constantly seen as problematic.

When somebody needs to assist you with all of your basic needs, there is often a feeling that they should be involved in these decisions, but over the past few years, I have learned just how untrue that feeling is. I'm not going to pretend that I don't still struggle in my relationship with nourishment, water, food, and the space my body takes up the world, but I will say that I have learned that regardless of how much help I may need, my body belongs to only one person, and that is me. I am learning, slowly to try and take care of myself first, knowing that I only get one body and I am the person who has to live in it. I will no longer apologize for it or for my needs because they are not a problem.

Disability does not give other people the right to supersede one’s decisions or comment on one’s body in ways that they would not want people to comment on theirs. I am learning that my body is not what needs to change; that it isn't my fault, and it never was. I do not have to destroy myself to make another person's life easier and I'm fighting back against the mantra that society sells us: being disabled means that you are less.

My body is mine, and it is good enough just the way it is. Needing help does not equate to losing the right to have self-determination about your life. No disabled person needs to put their body in jeopardy to make anyone else more comfortable. I will not destroy myself to fit into a world that was not designed for me. Instead, I will focus on destroying injustice and ableism wherever I find it. I will remind myself and everyone around me that it is the structures in society that need to change to make the world a better place. Needing help does not diminish my dignity for my humanity. I am a person and my body belongs to me, that doesn't change just because I'm disabled.