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A Brief Disability Soapbox

March 26, 2009

Last week, I talked a bit about what I do for a living. I’ve had a lot of exposure to people with various disabilities my whole life, and so I tend not to think much of it. I do encounter many people, though, who are far less experienced, even utterly inexperienced, and have some unfortunate misconceptions about both disability in general and what any given disability entails.

One misconception I see a lot is that a disability is absolute. If someone is mentally impaired, then they’re absolutely incapable of learning. If someone is deaf, then they’re profoundly stone deaf. If someone is blind, then the world is utter pitch blackness to them. If someone’s in a wheelchair, then their legs must be paralyzed. If someone is autistic, then they’re inexorably shut off in their own little world at all times. If someone has epilepsy, then they have tonic-clonic (formerly known as grand mal) seizures every day.

I could go on. The truth is that extremely little in this world is rigidly black-and-white, and disability is no exception. Disabilities cover a wide spectrum from very mild to very severe. Yes, there are people with mental impairments who function at the level of young children, but there are plenty of people with mental impairments who are able to drive a car and hold a job. The term “deaf” is broad and can mean total lack of hearing, inability to hear above or below a certain frequency, or inability to hear below a certain volume. Something similar can be said about blindness, and even many people who are completely blind do have light perception. People use wheelchairs for a great variety of reasons, and while some have absolutely no use of their legs or even the rest of their bodies, a good percentage of wheelchair users are not paralyzed at all: they could have cerebral palsy or multiple sclerosis or severe back pain, and may very well be able to walk with or without aid for a modest distance. The autism spectrum disorder spans all levels of functionality, from the shut-off and non-communicative to the bright but socially awkward. There are many different forms of epilepsy and many different types of seizures (such as absence seizures, in which the person seems to just space out for a moment or so), almost all of which are controllable with medication.

Another misconception I’ve seen actually comes in two different versions. One is that if a person has a disability, then that disability is the only thing wrong with them. More often, however, is the assumption that one disability means others as well. Specifically, many people seem to assume that someone with a physical disability must also have an intellectual disability.

The truth, as they say, lies somewhere in the middle. Just as there are plenty of people who have only one disabling condition, there are also plenty of people who have multiple disabilities. Sometimes they’re entirely separate disabilities that the person happens to have by pure perverse coincidence, and sometimes they stem from the same underlying cause. In the case of genetic disorders, multiple issues can be present because their expressions are coded in neighboring parts of the same gene. In the case of intellectual disabilities, the more severe the condition is, the greater the likelihood is of having a physical disability. And although it is true that some physical disabilities can have associated mental impairment, like cerebral palsy, hydrocephalus (so-called “water on the brain,” which is really a build-up of cerebro-spinal fluid in the skull), and even some forms of muscular dystrophy, this is certainly not true in every case, or even most cases.

A rather polarizing pair of misconceptions about disability say that these people are either brave, heroic saints or embittered, miserable wretches. It’s a tired, tattered, rusty, dusty cliché, but it fits here: People with disabilities are just people. They neither want nor deserve medals for just going about their lives. They can be just as pleasant or just as obnoxious as anyone else. The same etiquette is to be observed with them as with anyone else: If you think someone might need help with something, ask first and accept “no” as an answer.

One misconception that I personally am sensitive to is that people with Tourette Syndrome do nothing but swear uncontrollably all the time. In reality, only a fraction of those with a severe case have what’s called coprolalia, but it’s a sensationalistic symptom and so it draws disproportionate attention. Another misconception about Tourette Syndrome, in light of some of the more odd symptoms, is that these people are just acting out, looking for attention, and have perfect control over what they’re doing. Tourette Syndrome is a genetic neurological disorder that creates overwhelming urges in people quite comparable to the urge to scratch a mosquito bite.

Of all the misconceptions, though, the one that bothers wheelchair users the most is that they’re asexual: they either don’t want to or they can’t. The overwhelming majority of these people have healthy libidos and would love to find someone to have a full and meaningful relationship with. Many wheelchair users find it endlessly frustrating to be constantly overlooked as invisible, or seen as “safe.” As my boss once lamented, “Cripples need lovin’, too!”

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