Your glasses scare people,” said my mother, matter-of-factly.
The comment stung, but I knew she was correct. We were discussing why, at 16 years-old, I could not get very many babysitting jobs in my suburban neighborhood. My sister had just left for college and I had hoped that her jobs would come to me, but they hadn’t.
My glasses were ridiculous looking. I was severely vision-impaired. My glasses were not only very thick, but they had a concave inset that made my eyes appear tiny in the center, then huge around the edges. Not only that, but I had behind-the-ear hearing aids that I didn’t bother to hide under my hair. When I wore my hair down, all I heard was my hair going “swish-swish” in my ears. Add this to my somewhat weird mannerisms of holding everything close to my face and looking down a lot when I walked…I knew I basically looked like a dork.
“Do they scare you?” I asked her. This was the far more important question to me. I knew strangers did not understand why I wore funny glasses. But my mom knew me and knew what I could do. Did she believe in me?
“Of course not,” she said. “But you look so much prettier when you wear your contacts!”
The contacts vs. ugly glasses battle had gone on between my mother and I for years. I had contact lenses, but I also had to wear two pairs of glasses interchangeably with them in order for them to significantly improve my vision as much as my ugly glasses did. These glasses, one for near vision and one for far vision, were within the realm of normal-looking glasses. When I wore my contacts with these two pairs of glasses, I did look significantly more normal and less scary.
But to me, they were an unworkable, impractical solution. Although my ophthalmologist insisted that they would help me see better, it was a nightmare to pull off. Due to several eye surgeries, my eyes did not lubricate appropriately and wearing contacts constantly hurt my eyes. I would have red rings around my pupils when I wore them. My teacher of the vision impaired (TVI) would try to work with me to flip between them in class. One pair goes on to see the board, the other pair for my math book. Back and forth, back and forth. It was dizzying.
My mother would hide my ugly glasses to get me to wear contacts. Without corrective lenses, I could only see light and dark and a small amount of color. Rather than put on the contacts, I developed a habit of skipping school. It was a source of contention throughout my high school years. When I moved away, I never wore contact lenses again. Even today, just the mention of contact lenses (even writing this now) makes my eyes blink and wince in the memory of the pain.
Growing up as the only disabled person in a non-disabled family is confusing. My mother was awesome. She was hard working, immaculately put-together, and smart. She had worked her way up from poverty and went from being a mailroom clerk to a Vice President of a mutual fund company. When we had school conferences, my mother came in her business suit and her briefcase, high heels clicking down the hall with confidence. She had a friendly manner but was all business. There was no other mother like her. She had a killer work ethic and rarely missed a day of work or an obligation. She was stable and responsible. She seemed to never make a mistake.
My dad also came from humble beginnings. He was a railroad carman. Although he did not advance in his career in the same way my mother did, he diligently went to the rail yard for 40 years without complaint. He was also very stable. Even my older sister was near perfect. She studied hard and got good grades. She was never in trouble. In my family, the expectations were always clear. Work hard, follow the rules, do what you are told, be presentable, don’t cause trouble.
When you are disabled, those rules don’t always work. You can work twice as hard as others, but if you can’t see the board or hear your teacher explain algebra, it won’t produce results. If being presentable and conforming to the norm means that you will be in constant eye pain that makes you unable to concentrate, it won’t work either. Following the rules gets challenging when the rules assume vision and hearing. To advocate for yourself to get what you need as a disabled person is often viewed as causing trouble in the eyes of the rule makers. In my family, to be disabled felt a lot like being the family f*%&-up.
My mother tried to do everything right when dealing with her disabled child. She went to the IEP meetings, she took me to the doctor and did what they said, even when it didn’t work for me. She tried to treat me just like everyone else. Her unwavering expectations and work ethic are an essential part of my success today.
But what she had a very difficult time with was the fact that she was just uncomfortable with disability. This is not surprising really, and I think it happens in a lot of families. Children with disabilities are often born into families where they are the only minority and it’s common for family members to have ableist ideas about people like them. Like racism and sexism, in our society we swim in the water of ableism, ignorance and misinformation about disability. That does not magically go away when a child with a disability is born.
All of the interventions I used as a child were designed to make me appear and function as able-bodied as possible. The contact lenses, the magnification and large print, the attempts to get me to understand and interpret the blobs I did see without the use of a white cane, the surgeries to improve my eyesight—these were all to get me to be able to pass as non-disabled as much as possible. The logic behind this was that if I could pass as sighted or almost sighted and hearing, I would have an easier time and be more accepted into society. But there was always an underlying sense that if I looked and functioned too much like a Deafblind/disabled person, I was unacceptable to others.
When I got older and moved out of my house, I explored my disability in a way I was discouraged from doing before. I met more and more disabled people and ended up discovering that many people who were totally blind were more independent and confident than I was. Why? Because they did what worked, not what looked more normal. They also had a level of innate comfort with themselves as disabled people that I did not have. I always felt like I was doing it wrong if I did what actually worked for me, instead of doing what made others feel more comfortable with me. These disabled role models gave me the permission—the relief— of doing things my way and being proud of who I was even if I did not pull off passing as non-disabled.
Although my mother did improve over the years, she was often very uncomfortable with my disabled friends. They sometimes had deformed eyes or unusual mannerisms. When she was with us in public and we got the inevitable attention that comes with using a cane or a guide dog, that made her uncomfortable. For a long time, she tried to shield me (and herself) from associating with “people like them.” She didn’t quite get that I WAS “people like them.”
When I’m asked what I would want to tell parents that have a disabled child, I have many ideas and practical advice. But first and foremost, it’s this: You are probably unintentionally ableist. It’s understandable that you are because almost everyone is. You are probably uncomfortable around disabled people because of it. Your child will figure this out and it will hurt them and your relationship. Working on this and shifting your paradigm about what it means to be disabled will bring untold gifts to both you and your child. Don’t be defensive, just recognize it and set forth to learn.
There are people who are ready to help you. One of the best resources you have, not only for practical information but for increasing your comfort and understanding of disability issues are adults with disabilities. Go to self-advocacy group events and conferences. Find some adult role models for yourself and your child. You will get more comfortable with disability and your focus will change from trying to get your child to be ‘normal’ to finding out what works for your child. Listen to the real experts on disability, people who live with disability. Most importantly, recognize that your own child is the best expert of all.