I’ve been thinking a lot recently about what it is to have a disability versus what it is to be “normal”. I guess I started to think along these lines after reading this article, by Mark Leach outlining the latest claims from the biotechnology industry to detect any deviation from “normal” in embryos in prenatal testing. I read this and thought…what template of “normal” are they going to use here? There are potentially billions and trillions of combinations in our genetic code…which one will they pick? How earth shatteringly bland is that cookie-cutter person going to be?
By society’s standards, I am “normal”. I am, however, different to you. I look different, I sound different. I had different parents and a different upbringing. I grew up in a different town, went to a different school, listened to different music, had different friends. My friends and family and past boyfriends are different, my husband is different. My hobbies are different, my interests, my dog, my house, my taste in furniture, my favourite ice cream flavour…..
There is no one, living on the planet now or has ever lived on this planet, who is the same as me. And yet, I’m considered normal. My arrangement of genes is so unique that there has never been any one like me before. Even if I had a twin, she would be different to me anyway due to our unique life paths. But I’m normal. If everyone is so uniquely different, no two people are the same, then how on earth do you set about to work out who is normal and who is different.
I have a theory about this…
I’m normal because I make you comfortable. When I speak, I use language you can understand. Mostly, I behave in a way that you can predict. (I’m sure my husband would have a thing or two to say about that though…). My differences to you do not cause you any significant inconvenience or even cause you to turn your head because I am so incredibly familiar to you.
Even though I am fundamentally different to you… I make your life easy.
Wade, who has Down syndrome will be considered different by society. Even though he too has a genetic configuration so uniquely his…as unique as everyone else on the planet…he will still be seen as different. He will be considered to have a disability….for a variety of reasons. He will wear Down syndrome on his face because of the facial characteristics that come with it. He will most likely have some degree of developmental delay which will mean that he may not learn new things as fast as others or be able to communicate with others as easily or freely. He may have some health problems that can cause his life to be less easy then yours.
My question, however, is this…. How many of his differences will be ACTUAL disabilities or just things that make society uncomfortable or inconvenienced? How many of his disabilities are actually just society’s INABILITY to accept and accommodate difference?
His facial features that are characteristic to Down syndrome should not really be a reason to turn your head. His face functions just like yours and yet those features…the almond eyes, the flat bridge of the nose, the open mouth…signify the presence of difference and cause people to turn their heads to look. When you see his face, you are already making an assessment of what he is like or what he can and can’t do. His face is not a disability, it is society’s INABILITY to accept that everyone’s face is different. It is society’s INABILITY to consider that Wade is his own person with his own talents and personality. You have already assumed you know who he is when you look at his face.
Wade will most likely think differently to you. It may take him longer to learn things than it takes you. People think that there are a lot of barriers in the way of people with an intellectual disability. A lot of those barriers are the ones we, society, put there. And, sometimes, they needn’t be there at all.
Is it a disability to see the world slowly or simply or is it your INABILITY to think that there might be more than one way to exist in this world.
Will it be Wade’s disability that makes it hard for him to get a job or your INABILITY to consider him for the job he is capable of doing or spend a bit more time with him to learn how to do the task.
Will it be Wade’s disability that makes it hard for him to join in on conversation or your INABILITY to be patient, include him and listen to what he has to say.
Will your discomfort with difference and unfamiliarity with Intellectual Disability put a barrier in front of my son?
Will it be Wade’s disability that stops him from living an independent life or your INABILITY to give a shit? This is a philosophy I have had for a long time, even before Wade came into my life.
I call it, Step 1: Give a Shit.
The idea being that if you actually notice , consider and care about the person in front of you, life is easier and a hell of a lot nicer. When people lift their heads out of their own navels and worry less about what is happening to themselves and more about what is happening to others, then everything is better. Everyone likes to be noticed and valued.
When you Give a Shit about the person standing in front of you, your own worries become less because you are thinking about the others persons perspective. The person in front of you knows they are being listened to and they become more patient and understanding because there’s no need to put up as many defences…and so it goes… It’s a positive feedback loop that spreads out wards.
I’ll give you an example…. I used to have a regular customer at a cafe I once worked at, many years ago. He’d had a stroke and found it very difficult to say what he wanted to order. It could be really frustrating, especially when it was busy because I needed to get to other tables. In the short term, it would have been quicker for me to be dismissive and then he might have found another cafe to go to but I knew how important it was for him to maintain some of the habits and independent life he had before the stroke, and he was nice man. I liked him.
By Giving a Shit, I would spend a bit of time asking him questions about what he wanted. He would try to use hand gestures or point to something that would help. He had lost the ability to read after the stroke so getting him to point at the menu was no good. Once I worked out what he wanted, I remembered his favourites so that I could ask him a short list of potential things when he came in. Sometimes he would try to write what he wanted and I would recognise a letter here or there and offer suggestions. Sometimes he would use a sound that he associated with a particular meal but was unintelligible. I would recognise that sound sometimes and know what he was trying to say.
Because I Gave a Shit, he could eat out in a place that made him happy and comfortable. I also made a wonderful friend who I could sit down with and have a conversation with. Not a conversation by your standards but one none the less. It was very very emotional for me to see how happy he was to be listened to and valued rather than dismissed as making everyone very uncomfortable. Yes, he has a disability but it was less disabling for him when someone Gave a Shit and took some barriers away rather then putting even more in from of him.
Bear in mind though….if someone proves themselves to be a prize-winning tool time and time again after this first interaction then I do reserve the right to Give Less of a Shit.