I read one of the most profound statments I have heard in a very long time – and it was a “mater-of-fact” statement for the World Health Orginaization:
“Disability is the interaction between individuals with a health condition (e.g. cerebral palsy, Down syndrome and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports).”
This is so true and yet so overlooked. You can read the whole thing here. The difference between a disability and a medical condition really comes down to society’s attitudes. That could be the society you interact with locally (your family, friends, co-workers, school mates, etc.) or it could be the larger group that controls the news or the politics or the laws where you live. But, the major difference between Down syndrome and an infection or the flu isn’t what systems are impacted or how persistent those effects are. It is the way you are treated as a result of those conditions.
As a parent, I often say the most difficult thing about raising a child with DS is not therapies or medical complications, but the poor perception and misconceptions and dealing with the world in an “exception process”. In order to have our daughter have healthcare, we needed a highly contentious law stating it is illegal to discriminate her out of private health care …before she needs to be in Medicaid, another exception. For education she needs exceptional services and keeping her in regular class rooms could become a point of debate. She requires therapies that other kids do not generally receive – and thus she is an exception. The list goes on.
And here the WHO has just laid it out in black and white. It is not the medical difficulties – the low muscle tone or the heart condition, or the cognitive impairments that cause my daughter to be “disabled”. Those are medical issues like my runners knee or someones migraines. What makes her “disabled” is the attitude and acceptance around her. I quote the word “disabled” because I dislike it and because it highlights their point so well. We defined her with a lable that says she is “like us, but less” when in fact she is better than most of us in quite a few fronts. And she has opened my eyes ta boot! So she has made me “more abled” and equipted. Our society is better for the positive she brings to all and how she has impacted those of us that live with her and around her….and yet she is only labled as “disabled” or “lacking”.
Hats off to the WHO for making such a profound and obvious statement! The exceptions will always be there, this is a super-minority population in many ways. But the question is how we view those exceptions and more importantly, how we view the people who might have different needs. Then, by the WHO’s very definition, the easiest way to ameliorate disabilities is not through medical interventions or seek and destroy missions – but to change our attitudes. If we stop viewing differences as “bad” then there ceases to be a disability. Perhaps that should start with changing the words we use?