On "the disabled", and on limitations

In Spanish they changed the common usage of the term inválido (invalid) to the term minusválido (less-valid, or less-abled). This came about as politically-correct gesture to acknowledge that people with physical/intellectual/mental disabilities aren’t completely invalid –or useless– human beings; they simply are lacking of some standard human abilities. Of course, an aside issue that I won’t be going into is what is “standard” in humans. We all know of the concept of normality but none of us have run into a guy called Normal who has perfect stature, weight, skin tone, intelligence, emotional sensitivity, body symmetry, etc. etc. But back to the point about the change in terminology for certain people with markedly different limitations in their day-to-day functioning. An unexpected result of the lifting of labels off people is the new empowerment given back to them.

There are two stories that come to mind when I think of limitations. The first story is about 100 meter sprinters around 1968. See, prior to this year, everybody believed that no human being could run 100m in less than 10 seconds. I know I mention this now and we can chuckle or laugh at this as we’re all familiar with many athletes who have achieved this. In fact, running 100m in 10 seconds or just a few milliseconds over that in an international competition these days is almost considered a failure; but not so prior to 1968. Prior to then, humanity had come to believe –and accept– that no person could possibly ever run 100m in under 10 seconds. It was impossible! Right? God must have built into human beings an inability to run faster than this. Who questions God? Who would challenge this? No one did. Nobody could even pinpoint whether it was God’s law that no person should run faster than this or whether it was some athletics coach that decided this. Then one day one man decided he wanted to try. 

Jim Hines decided he didn’t care why somebody had said a person can’t run faster than 100m in 10 seconds; he wanted to do it. The first person he had to beat in competition was himself: his previous beliefs and his previous “personal best” (since that would have been over 10 seconds). Well, he must have tried over and over again (because no one is born at their peak ability) and he must have “failed” at his goal (running 100m in less than 10 seconds) many times. I guess he kept trying, though. Jim Hines proved God, someone, and everyone wrong at the 1968 summer Olympics when he ran 100m in 9.9 seconds. But more amazing than that feat was that Jim Hines didn’t just break a world record in running, but he busted a myth because of his refusal to believe it. And what was even more surprising and a feat more worthy than a simple gold medal was that Jim Hines’ achievement empowered others around him. That same night that Jim Hines broke the 10 second barrier in the 100m sprint, that feat that changed what we believed about human ability, that history-changing night, two other men were suddenly liberated from that limitation that somebody had said about human beings. Ronnie Ray Smith and Charles Greene ran the 100m in under 10 seconds that same night! How quickly can we change history, human ability, and overcome limitations once we allow ourselves to believe that we can rise above it.

The second story I think of regarding human limitations is about Dr. Temple Grandin, who I have spoken about in my blog before. Dr. Grandin was diagnosed with autism at age 2, this means it would have been in 1949. In 1949 society, children like Temple Grandin were thought of as mentally retarded and with little potential to be a useful or even meaningful part of society. Most “disabled” children would have been put in an institution with other children like her and left there for the remainder of their lives. No one would have tried to educate them or teach them any skills needed for daily living. Dr. Grandin’s parents were a bit different, though. Temple Grandin herself, if you had evaluated her back in 1949 and the early 1950s, would not have convinced you she had any particular potential that other children diagnosed with autism didn't have: she had a severe speech delay and she did not interact with others as a “normal” human being should have. But unlike the parents of other children with autism, Dr. Grandin’s parents didn’t believe Temple had yet reached her full potential, and they wanted to push her to it. I guess they wanted to believe that their girl was different, that she could be as close to normal despite this label of autism. So instead of accepting that Temple Grandin couldn’t talk, they sent her for hours and hours of intense speech therapy. They forced her to interact with other children and to learn what came “naturally” (or you could say easier) to other children: how to take turns, how to share, how to pick up on the emotional/non-verbal content of speech, what to say when others’ faces appear sad, how to control and self-regulate her behaviour when upset, angry, happy, etc. And you know what happened to Temple Grandin? You probably do; a lot of people do. She went on to graduate high school, she has a university bachelor’s degree in psychology, and she then went on to get a masters and then a doctoral degree in animal science. She runs her own business and designs large farm-scale machinery. She writes books and has had both books and films written about her. I suspect none of us would ever have heard of her story or that she would have even had the same successful story had her parents not refused to believe that a child with autism is an invalid human being, one without potential, and one that is unteachable.

Are there “invalids” in this life, though? Or should we push all people with physical and/or intellectual disabilities more so they can learn and change and be more like “normal”? The first question, I believe, is perhaps easier to answer. Are there people in this planet who have no benefit to themselves or to anyone in existing? I believe there aren’t. Don’t get me wrong, in our world there probably are people who exist only so their paid carers can claim a wage. Even they aren’t useless in this life; they aren’t invalids – their lives do have validity (even if only for this monetary reason). Of course, I’m talking about a worst case scenario here; the usual scenario is that people with physical and/or emotional disabilities have people around them that love them and care about them. Yet in this world the worst case scenario is not that uncommon either. We have terms like “wrongful birth”, and the termination of pregnancies due to social and medical reasons are seen as equally valid. I’m not trying to make a political or ethical point here, I’m simply pointing out that we all recognize that raising or living with a person with a physical/intellectual handicap is going to be more challenging, and not everyone wants to voluntarily submit to that challenge if there is a way to avoid it. The truth is that we as human beings have created a world that is easiest to interact with if you have an IQ of over 70, if you can walk with your own two feet, if you can use both of your upper limbs to interact with objects, if you can use your voice for verbal communication, if you can use both your eyes to orientate yourself visually in our environment, if you can perceive verbal communication and sounds through your own two ears, if you can control both bladder and bowels voluntarily, and the whole gamut of activities of daily living we associate with fully-abled human beings. So what if we want to avoid disability? There’s nothing wrong with that.

So should we be trying to make all “the disabled” into “normal people”? How many Temple Grandins can we create? Is it ethical? Is it doable? There’s a Spanish movie called Mar Adentro, about the life of Ramón Sampedro, a man who became quadriplegic from a spinal cord injury when he was young. Ramón Sampedro was a right-to-die activist who wanted nothing more than to be allowed to die because he considered his quadriplegic state, and what it turned him into, unworthy of living with. This statement caused an uproar, especially amongst other people who were paraplegic. Are the paraplegic unworthy of life?! Really? No, no; that is not what Mr. Sampedro was saying. He wasn’t making a statement about paraplegics; he was making a statement about himself. And that’s the point I’m trying to get at with this story, it is up to each human being to decide what we are willing to accept about ourselves as human beings and about our own limitations. The labels we adopt should be those we give ourselves. The abilities and limitations we set for ourselves should be those we decide. We may not all be able to learn to run 100m in under 10 seconds, and perhaps not every person diagnosed with autism will become like Dr. Grandin, but if we perhaps stop blaming the labels others have given us for our difficulties, we can start advancing.