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.
Top Comments
A point regarding the "do not stare, do not allow your child to stare" thing. I used to train assistance dogs for people with disabilities, and that involved spending a lot of my day in a wheelchair. It gave me a wheelchair eye's view into how people treat you when they think you are disabled, and let me tell you that it is not good.
But I always felt visible, because the dog drew people's eyes. Imagine my surprise when, speaking to actual clients who had recieved dogs, I learned that this is not the norm.
Many clients told me that before they got their dog, they were invisible. "People have been so programmed not to stare that they can't even look at you. It's very lonely," said one girl who never really made friends until she got her dog. Having her dog opened the lines of communication - people started approaching, asking her questions, and she made friends.
Many of the clients I spoke to hated the "do not stare" thing. "I don't mind if a child looks at my wheelchair and asks questions. I invite the child over to talk to me about it, and if it's okay with the mother, I give the kid a little ride," one client told me. "What I hate is people actively looking away from me, as if I shouldn't be seen."
You know how people make idle conversation with each other in a line at the grocery store or at the doctor's office? Yeah, people don't do that with you if you're in a wheelchair. They pretend you don't exist and feel that they are being sensitive by not drawing attention to your difference.
Because invisibilty feels SO much better.
People are SO programmed not to stare that even when I was in a wheelchair with a dog, people would still speak to a standing coworker rather than me. If one of us was testing the other's dog, we would follow the coworker and their dog around by foot, marking the dog's ability to complete basic tasks. Cashiers would then address the person on foot rather than talk to the person in the wheelchair, because they didn't even feel comfortable making eye contact.
Now, there is a line between looking and staring. But I think that when we tell people "don't stare" they hear 'don't look." If my child saw a person in a wheelchair or with Down Syndrome, I wouldn't say "don't stare." Instead I would say "do you want to say hi?"
Hi Nerida, I'd like to respond to part of your article, I hope you will accept my comments in good faith. If I see a mother struggling with a difficult child in the supermarket, I will smile at her, perhaps with my head tilted to the side, or a slight shrug of my shoulders. My intention is to offer her a little solidarity, I am not intending to be judgemental of her or her child in any way. Any Mother knows we have good and bad days, difficult stages, and down right hard times with our children and the last thing any Mother needs is judgement from a stranger. Yet your article seems to indicate that what I am actually saying to this mother with my sympathetic smile is that “You look shit, your life is shit, and your child is weird”. How sad has our society become that a simple smile could be interpreted is such a way and cause so much anguish :-(
I always smile at a mum with a child who is having a 'Moment' I would hope (as I usually have two of my own beside me) that the other mother sees it as a smile of solidarity not a put down.
My children have stared and asked questions sometimes not so quietly about all sorts of people when were shopping. Sometimes I handle these questions well and other times I am caught off guard and stammer and mess my reply up. I am human as you and your son are and not every outing goes to plan. I hope the majority of people you and your son meet are respectfull and nice to you. I certainly try to be every time Im out somewhere, even if my children do send me scurrying for the exit every now and then.