By Laurie Rubin
The connotation of the word "disability" has evolved for me over the years. My first reaction to the word itself is a negative one. It makes me think of an ATM machine that is out of order, a toilet in the bathroom with a big sign over the door warning one not to use it, a ticket machine at a train station, or an out-of-order elevator. You also hear on every flight as the plane taxis towards the run-way, a video in which the monotone voice warns, "Please do not *disable* smoke detectors in the lavatories." If a person hears the word "disabled" over and over as a way of meaning, "not functional", I fear that's the message they get when they see a "disabled" person.
There was a period in the 90's when my brother would come home from college telling us all the politically correct words to use.
"Laurie, people think that you might replace disabled with physically challenged or differently able."
Those expressions don't exactly roll off the tongue either, but we place so many images and so much emphasis on a word that to find one that is more suitable would perhaps change our views of people with
disabilities.
I also have a problem with how the word "blind" is used. Too often, you read or hear people poetically negating that word too.
"How could I be so blind."
"Love is blind."
Historically, blind means not only unseeing in the literal sense, but also in a deeper sense. People see blindness as being clueless, not being able to decipher the world around them. The problem with this
in my opinion is that people do not separate the literal from the figurative, and therefore expect a blind person to be unaware, clueless, socially inept, unable to fend for his or herself.
It wasn't until my freshman year of college that I actually realized how ignorant I really was about disabilities other than the obvious ones like blindness, being a wheelchair user, being deaf, being
autistic, having Down Syndrome, etc.
One of the first classes I took at Oberlin was one taught by a fellow student who had Epilepsy. It was called "Disability Awareness." It was one of the most enlightening classes I had ever taken. The
people in the class shared experiences about the specific issues they faced that I had never even considered.
One girl was dealing with a chronic wrist injury similar to Carpal Tunnel Syndrome. Sometimes, she'd wake up in the morning and the pain was so bad that she cried for hours, and didn't know how she was
going to get through the day. Simple things like opening her mail box with a combination lock were becoming impossible. When she informed the head of the email room, and asked if she could have a
key lock, the response was, "nope, sorry. The key locks are only reserved for blind students."
That very instant, I realize that people don't think, and just go on autopilot when someone has a genuine concern or problem with a disability that others do not consider a disability. Also, if something isn't visibly apparent from the outset, people refuse to see it as a disability. This young woman's problem was just as real as my blindness, but she was in fact at a greater disadvantage because her problem was not recognized, and she had to fight much harder than even I had to.
Another girl told us about being fired from her job because she had a seizure on the job. Again, here was a person who walked and talked normally, had perfect vision, but what she had to face on an every
day basis was arguably worse than what a blind person has to face. She had to think about whether or not to tell employees about her disability for fear of never getting hired. Then once they found
out, they refused to learn how to take the simple precautions or learn the steps you take for when someone has a seizure. It's as simple as making sure they're lying in a spot where they can't hurt
themselves until the seizure is over.
A woman with diabetes had similar issues. Even though all she needed was some sugar when having an attack, people didn't want to deal with this, as rare as the attacks were.
A story that really resonated with me was one I heard from a dyslexic student who was told she'd never even get past the fourth grade. This girl has since gotten a Master's from Yale. I think that story particularly pierced me because when I was in high school, I remember going to that little back room in the library to take my standardized tests in braille, and being told that whatever student entered that room after me was not to be mentioned to anyone. That little back room was for the kids with learning disabilities that needed to be tutored. These kids were made to feel so ashamed of their disabilities, were forced to hide them because they were made to feel stupid for being dyslexic, dysgraphic, or anything. If you couldn't see the disability, you didn't really have one.
Over the years, various stories like these got me thinking about our education system, about society, about fear, about ignorance. I realized that I was actually pretty lucky. I know right away about people's discomfort, and others know I need accommodations. No matter what I have to face, it can be dealt with immediately because it's right there, out in the open. I've practically got "blind" written on my forehead. I can then work with people in letting them get to know me as a person, and suddenly, the blindness isn't so bad. I'm just a person who does things just a little bit differently, or as my friend put it, "A friend who won't see me if I scratch my nose or if my clothes don't match."
Others, like the friends I met in that class, sometimes become more disabled as time goes on. They get less help, less understanding, and more stigmatized. They also have to hide under a so-called perfect disguise so nobody would think less of them.
I realize now that teachers need to realize that about at least half the kids they teach will have some sort of disability or another. They need to understand dyslexia to an extent and what resources are available to kids so they can grow and thrive. They need to understand medical disabilities, or ones that crop up from using a computer too much. They need to be just as prepared for kids who are upset because their parents are getting divorced, because they were adopted, because they are bipolar. Parents need to realize that when that perfect little bundle of joy is born that the baby will be as many layered as an onion, that the expectations that we place, the dreams we have for our children are not shattered, but
rather altered to fit the individual.
I remember one thing I said in fifth grade that was wiser than I actually knew at the time. I told my friends that everyone is disabled. They were all totally offended and made me apologize to them because somehow my making that comment meant that I had just insulted everyone. A disability is not an insult. We are not out-of-order telephones or smoke detectors or ATM machines. We are beautiful, multi-faceted people who experience different things in life. We are good at some things, not at others. Sometimes, our greatest weaknesses become our biggest strengths. I feel that I'm a happier and better person because I faced adversity from what I had to fight for as a person with a disability. I hope that what I've learned from my other friends with vast arrays of different disabilities will help me in making the world aware that we don't need to hide. We simply need to think of the individual person more, and adjust things slightly.
I still dislike the word "disability." I feel that as long as we use it, people will associate it with something negative. Also, the concept of having a disability is so finite. Nobody is excluded from having a disability in his or her lifetime. Eventually, we all have to encounter it whether through aging, through having a child with different needs, because of a car accident, medical conditions that come up, or just through living life to the fullest.
In Harry Potter Book 6, one of the most good-looking, heroic characters is badly scarred by a werewolf. In the hospital room, everyone is surprised when his beautiful fiance says that she loves him even more for his scars. She says the scars only show that her future husband is brave. In that same room, another young woman is arguing with the man she loves, and is telling him that she wants to be with him, even
though he too is a werewolf. He says to her, "Yes, but you deserve someone who is young and whole." The father of the other scarred young man says, "Yes, but she doesn't want someone young and whole. She wants you. And after all, young and whole men do not necessarily remain so."
That was one of the many things I loved about the Harry Potter books. They just seem to capture what life is all about. Disabilities are only marks of our experiences, things that only make us more interesting, more beautiful. The day society stops "disabling" us is a day when we can truly celebrate humankind and diversity.
