“If the definition of beauty gets any thinner, no one will fit.” – Unknown
I found this quote and put it in a collage that hangs in my bathroom. It has images of people from all parts of the world, who are diverse in their size, shape, age, skin color, and abilities. It’s there to remind me that diversity is beautiful, and I should not compare my body to anyone else’s.
Body image, simply put, is how we see ourselves as compared to the standards set by society. I’ve never written about this subject as it relates to disability, perhaps that’s because it’s such a complicated and deeply personal topic. Even though I’ve come to a place of self-acceptance and now comfortable in my own skin, I work hard to keep myself as strong as possible. It is not because I am trying to fix myself but because I want to be healthy so I can maintain my independence.
When I was about 40 years old, I heard family therapist and disability activist Norman Kunc speak for the first time. I identified with everything he said because he too has Cerebral Palsy. I had a light bulb moment when I heard him say it was ok to be disabled and I didn’t need to be fixed because disability is part of every culture and every segment of society. It might sound ridiculous, but at that moment it felt as if a big weight was lifted off my shoulders.
Shortly after hearing Norman speak, I was asked to co-teach an education course at the University of New Hampshire entitled, Contemporary Issues and Developmental Disabilities. The textbook we used for this course was Disability is Natural, Revolutionary Common Sense for Raising Successful Children with Disabilities, written by Kathie Snow, who raised a son with a disability.The message of disability as diversity rather then a problem to be fixed was a constant, necessary, reminder that I wasn’t broken. Because of this course I was also introduced to the social model of disability. Disability is a complex interaction between a person and their environment. When the environment is set up in such a way that a person can maximize their independence, then their disability isn’t such a big deal. For example, I have a raised bed garden, which makes the whole process of growing vegetables possible for me. Without it, gardening just wouldn’t be attainable, not because I have a disability but because the environment isn’t set up for me to be successful. The social model of disability puts the responsibility of making the environment accessible on society, or my brother Jeff, who built my raised beds rather than on me. So, what does this have to do with how I feel about my disability and my body? I am not saying that having a disability isn’t hard sometimes, but I really don’t see myself as a burden on society. I see disability as just another type of diversity.
Just because I have decided that I am not broken, doesn’t mean that I don’t struggle with my body image from time-to-time. My scoliosis and spending the majority of my time in a powerchair can be uncomfortable. Not to mention how difficult it is to wear some of the hottest fashions. I wear sneakers just about all the time, which makes it very hard to look totally formal when wearing a dress. (I consider finding dress shoes that work on my feet a true miracle.) It’s also difficult to wear traditional jeans, with buttons at the waist.
How we feel about our appearance is directly related to our self-confidence. The images of masculinity and femininity we are bombarded with in the media daily lack diversity and only portray society’s narrow perception of beauty. Women are supposed to be tall, thin, and perfectly made up. Men are supposed to be strong and independent. These standards are unrealistic, but even more so for some people with disabilities. Even though times are changing, and we are stretching the boundaries of gender, these standards are still alive and well today. Did you know that the average American model is 117 pounds and 5’11”? That is 7 inches taller and 23 pounds lighter than the average women by today’s standards.
The Body Positivity movement has done a lot to change our perception of beauty by helping us to create a more diverse understanding of it. This movement focuses on health rather than body mass index, size, or shape. After a little more research, I learned about the Beauty Redefined organization and their TEDx Talk, Body Positivity or Body Obsession? . The basic premise behind it can be summed up with this statement, “Our bodies aren’t ornaments they are instruments.” In other words, we need to focus on our value as people and our skills and talents rather than what we look like. I feel this is especially true for women.
I know that disability does not have to equal poor health; we can do our best to eat right, exercise, and have a positive outlook on life. However, good health is not always possible. It can be very hard to maintain a positive body image, especially if you are dealing with the constant ups and downs of illness. It’s okay not to be totally in love with your body at all times.
I had a conversation with my friend Michelle, who has a degenerative disease. I was interested in her thoughts on body image and how she deals with the changes in her body. She is a great example of someone who has learned to use her talents and who has found her passion. She started her own business called Watercolors by Michelle. She has been a regular exhibitor at the Robert Lincoln Levy Gallery (The Portsmouth Art Association) for the past three years and she also sells her work at local craft fairs around the seacoast. Michelle said, “I found something I love to do, that I can make some money. I consider myself a professional woman, and I like to look that way, even if it isn’t what society expects.” The key is to find a balance between using our skills and talents while being proud of the way we present ourselves and being confident about who we are. That is where true beauty comes from.
From where I sit…
If I could talk to my thirteen-year-old self, I would tell her that she is not broken, and she doesn’t need to be fixed. I would also tell her that our bodies don’t really have that much to do with who we are and who we will become.
If you have a significant physical disability and need assistance with personal care or maybe you have to deal with a lot of medical providers, you may feel like your body doesn’t really belong to you. I’ve been there. This is a real problem and it’s hard to feel good about your body if you don’t feel like you’re in control. Learning to use your voice and advocating for yourself can help you with all aspects of your life. Talking with someone you trust who can support you and help you deal with this problem might be a good idea. Although we can’t be in control of everything in our lives, when it comes to our bodies we should be in complete control.
