Whose Body Is It Anyways?

When I was in the 10th grade, like most students, I started thinking about what I was going to do after high school. However, unlike many high school students, I was concerned about who was going to help me get ready every morning once I moved out of my parents’ home. I have muscular dystrophy, a progressive muscle wasting disease that impacts the muscles in both my legs and arms. I had been just two years shy of using a wheelchair at that point. Going from standing to sitting all day, I had gained some weight. And weight gain for a disabled woman, I learned, was not an option.

At first it was my doctors. They warned me that my parents would not be able to lift me all my life and that I would have to find a new way to transfer from sitting to standing. This scared me. Terrified me! If no one would be able to lift me, how would I ever leave the house again or use the washroom? Then there were my attendants, who frequently made comments about my weight and how difficult it was to help me. The thought of not being able to move out on my own and go to university also terrified me.

Because of this, I started to diet, but like with any diet, especially for a person who can’t exercise, it didn’t work so well. I had to keep cutting out more and more in order to continue to lose weight. And I did lose weight. As I did, the compliments grew. But, they weren’t the compliments that you would expect. I wasn’t told that I looked better in my clothes: I was told that it was so much easier to lift me. I wasn’t told that I appeared to be healthier: I was told that it was so much easier to help me pull up my pants. The compliments weren’t about me, rather they were about how much easier I had made it to help me.

Persons with physical disabilities are often told that they must change their body in some way in order to make it easier on their caregivers. This becomes a huge problem in encouraging weight loss, especially for a population that is already at risk for weight gain because of numerous factors (e.g., low income, difficulty with movement and exercise). Weight loss is not just seen as preferred; it is seen as necessary for your very survival. When you place such high stakes on weight loss, the means to achieve that weight loss becomes less important, even if it means that a person is starving themself.

Health care providers and caregivers need to be aware of how powerful this fear can be on persons with physical disabilities. It is not just enough to scare us into a smaller weight category, but equal attention must be paid to the means to achieve that weight loss. Often weight maintenance methods are inaccessible for persons with disabilities. Very few gyms have adaptive equipment and, if they do, can often have costs beyond the means of a disabled person’s income. More work is needed at supporting persons with disabilities to achieve a healthy lifestyle, independent of their size. Regardless of how much assistance we require, our bodies belong to us. Disabled or not, steps need to be taken to reclaim OUR bodies.

Kaley Roosen (M.A.) is a Ph.D. candidate in Clinical Psychology at York University. She lectures on topics concerning weight, disordered eating, and body image. As a woman with a disability, she has focused much of her advocacy & clinical work, teaching, and research on connecting scholarship from critical disability studies with psychology. Her current research examines eating and body image concerns in women with physical disabilities.