My 22-year-old son, Jacob, tests as "mildly mentally retarded" on standardized IQ tests, but he's one of the smartest people I know.
Like many people with intellectual disabilities, Jacob speaks with few filters, often saying the one thing in the room that everyone is thinking, but no one else dares to say. Last week when friends were over for dinner, he was asked why he contributed little to the evening's conversation. His answer came quickly: "You're talking about boring stuff."
So when Jacob asks, "What's so special about special needs?" it's a great question.
When people speak to Jacob, they often infantilize him, speaking slowly, avoiding big words, as if he's a toddler. They don't have to speak that way -- in fact, he thinks they're the slow ones and politely listens. At the National Organization on Disability, which I lead, we refer to this as the "tyranny of low expectations."
Just the word "disability" carries connotations of a person who can't do much. Merriam Webster's online thesaurus uses synonyms for disability such as 'weakness.' Two examples of antonyms are 'healthy' and 'strong.'
People with disabilities are also often heroized, seen as inspirational, for doing nothing more than going about their daily lives.
These tendencies -- either to expect very little, or to heroize -- are flip sides of the same coin.
Those of us without a personal experience with disability, think of people with disabilities as categorically different from everyone else. They are living with "horrible" circumstances to be "risen above" or overcome. Disability in this light is not seen as a normal part of the human condition, but as an unspeakable situation that can only be referred to euphemistically as "special" or "exceptional."
In her TED talk, "I'm not Your Inspiration, Thank You Very Much", comedian and journalist Stella Young, who is short-statured and uses a wheelchair, speaks of "inspiration porn." By that she means images like "the images of the girl with no hands drawing a picture with a pencil in her mouth, or a child running on prosthetic legs." She notes society's tendency to objectify one group of people (in this case, people with disabilities), for the benefit of another group (those without disabilities).
People with disabilities Ms. Young explains, inspire and motivate us, so we can look at them and think, "However bad my life is, it could be worse. I could be that person."
But what if you were that person? In all likelihood, you wouldn't be doing anything other than living your life. Yes, you'd have challenges, but all people have challenges. Darwin taught us that those who survive are not the strongest nor the most intelligent, but those who are the most adaptable. In other words, those who live with a disability are often doing nothing more than you or I might do under the same circumstances. We adapt.
My son, Jacob, is in most respects, just like you and me. He lives his life, adapts to his cognitive and physical challenges, understands ideas and human emotions, cherishes his time with his friends, and goes to his job three days a week.
But because of Jacob's disabilities, he has regular sessions with his speech therapist, physical therapist, neurologist and a bevvy of other doctors. It's a choker of a schedule, with constant disruptions to a life that for him, is just his life, not some heroic act.
So it makes perfect sense that Jacob would ask, "Mom, my life is a pain, with all these appointments, doctors, and other people helping me. What's so special about that?" He's right. It's not special at all.
Do you think the tyranny of low expectations exists? Share your thoughts below.
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