The Cultural Value of Disability… & Star Trek

In this storm that has been raging regarding disability, prenatal testing and the economics of disability, case after case is made on the value of a life that is different – or the power of choice. The importance of accurate advice to those women who need and want it. I agree with all that and what I also think is that nothing will fundamentally change so long as our culture continues to regard disability as nothing but a lodestone, occasionally paraded out as “inspiration”.

We do not, as a society, look at individuals with disabilities as unique people with unique gifts. Not unique as that condescending “special“; rather, unique as each flower is unique, each star, blade of grass, hummingbird – unique as each and every human being is unique. No more, no less, and all worthy of delight in their respective ways.

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As a society, we do not seek out what an individual with Down syndrome – or _______ fill in the blank disability – is going to offer us; we try and force that person into the societal box.

We say, fix that, that and that and you’ll be good for this, this and that. We assess, we measure, we say, fine you are at this level and so you are fit for x,y.z. Go make some coffee at Starbucks because you can handle repetition and have a skill-set suited to simple tasks.

We don’t say: you dance like a wild mad woman and your joy brings joy so let us use you as a healer. Let us respect that you have this energy and power and can bring real good and positive change to the depressed, the unhappy, the people that need your light.

We don’t say, you are Deaf – you see, observe and note: let us respect that you have the power to communicate without words, let us use your power and you will be our ambassador in situations in which we need to observe, see, and note.

We don’t say, you are highly sensitive – your body is like the canary in the mine. Let us respect and honour your sensitivity and learn what needs changing in our environment. Something is wrong, is off, and you can help us understand what that is.

We don’t say, you are depressed – and so many of us are depressed! What is happening within our collective whole – the framework in which we build this thing called ‘culture’ upon? We were not born with this kind of sorrow; something about the way we are choosing to live is affecting us negatively: let’s find it. Change it. Live in different ways that do not cause us to become sad.

We don’t look at the contribution of disability in and of itself, you see.

We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it’s a problem.

Something to be fixed.

Broken bits of human flesh that need mending.

We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.

Those of us with a child with a disability know that our children bring with them gifts, just as all children do. We clamour for attention – we want the world to know this truth.

We say, ‘hey! hey! look – look at my kid, look at my life! we are normal – I was wrong, so wrong, before disability came into my life!‘ and the outside world scoffs and thinks we are somehow trying to validate the fact that we have a child who is different, “she’s making the best of a bad situation,” they say.

And we want them to know, ‘no, no! REALLY! I am telling you the solid gold truth!”

Perhaps I am jaded, but while I think that jumping up and down and clamouring does more good than nothing, I have a hard time seeing that anything will truly change unless our collective perception of disability itself changes.