Attitude Matters
As anyone who knows me will tell you, I am not prone to overreaction. I cannot imagine that I would ever be described as sensitive and I am extremely difficult to offend (I am sure many have tried but few have succeeded). I am happy to answer any question relating to Sasha and his disability and I firmly believe that there is no such thing as a stupid question. When, some time ago, a distant family member informed me that she used to work as a school bus escort with ‘spastics’, and ‘what did people call them now?’, I merely advised her that the acceptable term is, in fact, ‘people with cerebral palsy’ (and then laughed about it later).
But. You knew it was coming. There was always going to be a but. There are a few things that I really can’t stand. One of them is ill judged sympathy. I do not ask people to feel sorry for me. I do not (generally) feel sorry for myself. Neither do I wish anyone to feel sorry for Sasha. His disability is obvious but it is so much preferable when people comment on how much he has achieved, despite the fact that he was indisputably born at a disadvantage. Or when people admire his sense of humour, or the fact that he rarely makes a fuss (unless you are trying to brush his hair. Epileptic seizure, no problem for this kid. Tangle Teezer, major meltdown). All of these thoughts and feelings acknowledge that, yes, Fate was pretty harsh, but nonetheless there are positives which outweigh any need for sympathy. Some years ago, Sasha attended a party for the birthday of one of his school friends. The entertainer was a lady (who I will not name and shame, although I made a mental note in order that I never inadvertently book her for one of my own children’s parties). The party passed without major incident and was enjoyed by all the children there. Fast forward a couple of weeks and I attended another party (the joy of parenting of course meaning that most weekends are spent at some kind of child-related celebration), this time for a friend of one of my daughter’s. Lo and behold, the entertainer was She Who Must Not Be Named. I went to talk to her and mentioned the previous party I had seen her at. With a look of total condescension on her face, she said, ‘Ahh, bless them.’ I think what bothered me the most was the fact that, rather than seeing a room of children having fun at a party, this woman could not see past their disabilities and the feeling of pity which she experienced when she looked at them.
Another thing which really gets my goat (looks like I am offended by things after all) are those who think that people with disabilities should be grateful for things which they need in order to live normal lives. Take as an example a comment made by a parent when we were touring the Junior school last summer ahead of Gabbie’s transfer from the Infants. We were walking round in a group of five or six people, guided by a year 6 pupil. She showed us the usual suspects (lunch hall, ICT suite), and as we walked past one door she said, ‘That’s Charlie’s bathroom.’ Now, as it happens, we know Charlie as he is the same age as Sasha and the two had had hydrotherapy together back in the day. Charlie has Spinal Muscular Atrophy and similar physical needs to Sasha, including a toilet large enough to accommodate his wheelchair and someone to assist him, ceiling track hoist and so on. Before a school admits a child with these type of complex needs they must confirm that they are able to meet them, and subsequently provide what that child requires. Therefore a bathroom which is suitable for Charlie was installed at the school. As we peered obligingly through the door, one of the dads in the group remarked ‘Isn’t it good that they’ve done that?’
Grrr. Grrr. Grrrrrrr. Did he comment on the non accessible toilets as we walked past? Did he feel that his own child is extremely lucky to be able to use the toilet during their school day? Of course he didn’t. Because why on earth would anyone consider it anything other than a provision of their most basic human rights, not even worth noticing? And why, therefore, would it be any different that Charlie was able to go to the toilet while attending school? Let me clarify at this point that we are not talking about a luxury salle de bains with gold plated taps, Egyptian cotton hand towels and Molton Brown handwash (with the obligatory cream residing alongside). No. This was a bog standard (pardon the pun) bathroom, larger of course and with the very attractive addition of hoisting facilities. It is merely the provision of what Charlie needs to access school in the same way as his peers. And this is the very definition of equal opportunities. Not treating everyone the same, but giving everyone the same opportunity to succeed.
When I have raged about this to people who are not involved in the world of disability, their responses have been unwaveringly similar: ‘Oh, I’m sure he didn’t mean anything by it’, or other comments in the same vein. And, of course, I am also sure he didn’t. I am certain that his subtext was not that Charlie didn’t deserve a bathroom. It is just the implication which still pervades society that people with disabilities should be thankful when they are accommodated and provided for. Everyone is highly impressed by the provision of changing places toilets in certain places of late (complete with an adult sized changing bed and hoist), without considering that these facilities prevent people like my son from being changed on the filthy floors of ‘disabled’ toilets which are totally unsuitable for a significant proportion of people with disabilities. I hope that within his lifetime we will see a world where he can always assume that there will be a bathroom available to meet his needs, and maintain his dignity, as much as his sisters can.
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