By NERIDA LUCAS
There are many debates taking place at the moment between people with a disability and those without. These debates circle about with people to-and-fro’ing with their opinions and judgements. It’s great that the lines of communication are open but is any progress actually being made? Does stating our reactive emotions shake foundations? I’m not sure it does.
I am an honest, realistic, practical person. So here it goes…
Many people ask how to behave around a person with a disability, be it physical or intellectual. Here are a few tips.
My son is 10 years old and has Down Syndrome, Autism and ADHD (Hyperactivity). He is more normal than not. His disability is like a sheer veil around him that slightly alters his view of the world. It is not his whole and it is not who he is. He is a 10-year-old boy. He is not the lesser. The normal social protocols apply to us. Us being, him as a person with a disability and me as a woman who has a child with a disability.
Do not stare, it is rude. Do not allow your child to stare. If your child asks you a question or comments on the disability, answer it. Do not get embarrassed and run away, that is disrespectful to us. A simple ‘I have no idea’ or ‘it’s none of our business’ would suffice. I would prefer you tried to explain it rather than just ignore us.
If you feel their staring, question, or comment was embarrassing or rude then look me or my son in the eye and apologise. Treat us with human decency and common respect. The worst thing you can do is to be rude or allow your child to be, regardless of intent, and then not address it, it is degrading and disrespectful.
Never talk down to or over my son. Greet him as you would any other 10-year-old boy, again the normal social etiquette applies. This is a reluctant generalisation, but greet a person with a disability according to their age. Never assume you know a person’s mental capacity, it is impossible to judge. Their carer will help interpret if need be. If in doubt treat the person as you would want to be treated, not you ‘in their position’, the you that you are now.
Respect his physical space. It would be strange to pat a standard 10-year-old boy on the head or stroke his face. The same applies to my son.
If he misbehaves, react as you would any other mother and child. You wouldn’t tell someone you just met that their child is a pain in the backside. Do not do that to me. If he is misbehaving he may just be having a bad day like any other person. Do not assume he is always like that. Please do not react sympathetically, like using a smile-with-head-tilt.
You wouldn’t meet a new person and greet them with “You look shit, your life is shit, and your child is weird”. This is what you are saying when you tell me “I don’t know how you do it” or “He is hard to handle” or when you see a person with a disability and assume everything is difficult and horrible for them and they are hero’s ‘for living this way’. That is not validating. Only when you know me in my entirety would you have the right to comment on my life.
How do you think it makes me feel when I am desperately in love with my son, as any mother is with their child, and you only notice the negative, just think about how hard the tough times are? It feels as bad as you would imagine.
Yes, we feel a huge amount of stress, it is often unbearable. Most of the stress is from society and the ramifications of the reactions and inactions we receive everyday. The staring, rude comments, ignoring, patronising, degrading, abandonment behaviours we are subjected to from the people around us. We are not in a united subsection of society, there is no unification of people with a disability and their carer’s. I once joined an online group for mother’s of children with Down Syndrome.
Their welcome message informed me I was not in fact allowed to use the term ‘Down Syndrome’ and could only address my son’s disability with its genetic term ‘Trisomy 21′. I informed them I would do no such thing, to put it politely. Needless to say that was the end of my association with them.
The truth is, I am the same as you. My child is equal to yours, he is their peer. We are the same as you.
My circumstances do not define me.
I am your equal. I am not different. My life is not different. His life is not different. Only our logistics are.
My son is a loving, happy and accepting soul who lives without greed, without hate, without stereotypes. He doesn’t care how much money you do or do not have, what car you drive, the colour of your skin, your sexual orientation, or whether you are fat or thin. He just sees whether you are a good person or not. That is what makes him special.
Just because his physical looks, and his actions and reactions are not what you are used to or what you would expect, does not make him or I different. It just means you need to expand your definition of normal.
How to behave around a person with a disability? As you would a person without a disability.
Degrading question isn’t it.
Nerida Lucas is the director of the Axis Program and the author of Carer’s Truth. She has three children, Calvin 11 years, Lewis 7 years and Bethany 10 months. She is dedicated to the aid of carers and enlightening the world of what it is like to live with, care for and love a person with disability and is passionate about lifting the veil of secrecy and misunderstanding that surrounds them by changing society’s perceptions towards people with a disability and their families.