Photograph by iStock
Nina Butler has some tips for those wanting to ‘help’ people with disabilities...
I am not a touchy-feely kind of person. I don’t give out hugs often (except in extreme circumstances) and, if I am honest, I am quite awkward when someone hugs me.
I will kiss you only if we are dating (if you are lucky), and if you try to be romantic with me it is very likely that I’ll laugh. I do not enjoy being fussed over and – surprisingly, for someone who writes about herself in a blog – I really do not like attention.
I am also 159 centimetres tall (4 foot 9 in the old language), weigh barely 45 kilograms and I have a disability (Incontinentia Pigmenti, for those of you playing along at home). So, apparently, none of these things matter.
I suspect there are very few people who appreciate having their cheeks pinched, having their clothing or hair adjusted without permission or being patted on the head. But I get this quite regularly. I guess it is just one of the perils of being within easy reach. Did I mention I am 30 years old? People also often feel the need to tell me how tiny I am. Do they think I am not aware?
I have had a lot of surgery. So much surgery, in fact, that I have lost count, although I think the tally stands somewhere around 30. I had my first operation at the ripe old age of six months. Since then I have had almost every part of my body operated on at one time or another. I have two enormous volumes of medical files buried somewhere deep within the bowels of Princess Margaret Hospital, the major children’s hospital in Western Australia. And my greatest claim to fame (medically speaking) is having been a patient of every department there – except oncology, thank goodness!
This sounds bad, but really it isn’t. Yes, some of the procedures may have been ‘serious’, in that they involved fiddling with my heart or brain, reconstructing my feet or removing tumours from my spine (calm down, they were not cancerous).
But, in the main, the list is made up of routine things, such as the endless insertion of grommets or having my tonsils out, and didn’t even require a stay in hospital. Most importantly, I came through each of them relatively unscathed.
Actually, 30 operations is really not that many. I know quite a few people whose tally is as many as 50. Now that is a lot.
I try not to broadcast my medical adventures, simply to avoid the fuss. I could have something as simple as a tooth extraction and people react as if the dentist was going to remove my whole head. Relax, people! I may be little and I may walk funny but, I assure you, I am not made of glass.
Then there are the ‘helpers’. These are the folk who insist on ‘helping’ me with everything (whether I want it or not). This is sweet, but helping me cut my meat in a restaurant, or clipping me into a seatbelt like a child when I am perfectly capable of doing it myself, can be quite diminishing and at times makes the task at hand even more difficult.
What is important to note is that every disability is different, just like every individual. Remember the immortal words from the theme song to the 1980s sitcom Different Strokes: “what may be right for you may not be right for some”.
It is always a good idea to ask first before you jump right in and help. It is not that I am not grateful; rather, it is that sometimes the help just isn’t that helpful.
It is almost impossible to tell someone to back off. Often people assume they are being rebuffed because I am too embarrassed to accept their help.
As for the cheek-pinching or the head-patting, it is not like I can slap them or push their hand away, as that would be rude.
Perhaps I am just too nice…
» Nina Butler is a writer and polite provocateur based in Perth. She blogs at Inner musings of a funny-looking kid.
» This article first appeared in Ed#499 of The Big Issue Australia.