A Response on Becoming Disabled

Back in August 2016 I read a very interesting article in the opinion section of the New York Times. It was titled, “Becoming Disabled” by Rosemarie Garland-Thomson. It asked the question, Where is our disability pride movement?” Afterward I wrote my own thoughts  and personal reflections. In honor of Disability Pride  this month I am dusting off  my piece  and reprinting  it here. It is still relevant as we in the disability community continue to work, advocate, teach, communicate  and find  pride in ourselves.

In the beginning of the article, Garland-Thomson noted unlike other marginalized and minority groups the disability movement hasn’t gotten the same level of attention. She reasoned it is because we have a clearer idea of race, gender and sexual orientation; but when it comes to being disabled maybe not. I agree. In my 20+ years of disability, there has been a lot of work I have had to do to educate people about what that really means. Whereas it has not been the same for being female and Black.

People make assumptions about my abilities in thinking I can’t work, go to college, travel safely, cook in my kitchen, own my own home, enjoy a movie or date and the list goes on and on. I find myself constantly having to explain to people that I can do all these things and much more. Sometimes people are not convinced until they “actually see it” and then not even then.

A deeper issue is the varying degrees of vision impairment, most people are not totally blind or totally sighted. Some might have light perception, no center or peripheral vision. Their vision might be blurry or they might have floaters in their eyes.

Learning New Skills and How to Communicate

Garland-Thomson went on to say that disability is everywhere once you pay attention and the numbers are growing. She said, “The Centers for Disease Control and Prevention estimates that one in five adults in the United States is living with a disability. The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States.” But even with that the average person does not wake up “knowing how to be disabled.” This is also very true. When I lost my vision I didn’t know automatically how to be blind. It was actually the opposite. I had to be taught. I had to go through a vision rehabilitation program where I learned braille, mobility and assistive technology skills. There was a big learning curve and a huge life adjustment going from being a fully sighted person to low vision and later total blindness.

Garland-Thomson went on to say that disability is everywhere once you pay attention and the numbers are growing. She said, “The Centers for Disease Control and Prevention estimates that one in five adults in the United States is living with a disability. The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States.” But even with that the average person does not wake up “knowing how to be disabled.” This is also very true. When I lost my vision I didn’t know automatically how to be blind. It was actually the opposite. I had to be taught. I had to go through a vision rehabilitation program where I learned braille, mobility and assistive technology skills. There was a big learning curve and a huge life adjustment going from being a fully sighted person to low vision and later total blindness.

Not only did I have to learn these new skills but communication and language had to be worked out. Understanding “I am visually impaired or blind now” is a hard pill to swallow. Then trying to communicate that concept to others can be overwhelming. Even though I got a degree in journalism and thought I was fairly good at written and oral communication, I had to work very hard on getting my point across after I went blind. People misunderstood what I wanted and vice versa. I had to learn patience and understanding. Sometimes I would have to rephrase the question or statement and try again to explain. People thought they knew better what I needed neglecting even to ask me and I would have to find a gracious way to correct them on that point. Also, in conversation people would be naturally curious, asking questions that were not always appropriate about my vision impairment leaving me to try and find a polite way to tell them that it was none of their business.

Identifying  Yourself

Another point that impacts  our pride movement is what we call ourselves. Are you calling yourself blind? Are you calling yourself visually impaired? What about partially sighted or legally blind? Do you use people first language where you focus on the person and not the disability; or name the disability upfront? Trying to make this decision all plays a role too.

I personally use the word blind because that is truly what I am. It is clear and straight to the point. But there are times in some social settings where I do use the word visually impaired to help make people feel more comfortable and at ease. This way they don’t feel so awkward or uncomfortable being around a person with vision loss. But should I try and do that? Maybe or maybe not.

Positive Role Models and Images

This leads to my last point. We may fail to see or read about positive images of blind and visually impaired people accomplishing great things in society letting our minds take on a negative viewpoint. Sometimes it is hard for us to relate to situations and circumstances unless we have had direct exposure to it or unless we know someone personally who has. Growing up I don’t remember reading or hearing much about people with disabilities or people that were blind. I did read a book about Helen Keller when I was in middle school; and I did listen to music by Stevie Wonder and ray Charles but that was about the extent of it. Still that exposure didn’t tell me much about their personal lives and how they really dealt with their disability. So, when I went blind I was not able to really use those people as role models.

But I was fortunate to have had a blind co-worker when I was a teen in a federal government summer job program. She was an older woman and used a white cane and assistive devices I would later use too. I remember her independence and how she was able to work and do her job effectively; telling me I could do the same.

When I look at the beginning of my journey, I can’t say there was pride in being blind because of the huge adjustments to vision loss. But today, I can say that I am proud to be blind. I have accomplished much in my years and don’t look at it in a negative way. I see how my life has added value to society. I also see how I have been able to help so many people through my own personal journey of disability. I can relate and understand people’s pain and problems a lot more than before. I am not ashamed to be blind because it is just a part of who I am not all of who I am.