I have been naïvely unaware of the commercial side to disability. Thinking about it, of course, it’s obvious: here is a large sector of the population with a whole set of unique needs; why on earth wouldn’t people try to make money out of supplying those needs?
We recently had a day out at “Kidz Scotland,” an exhibition of equipment and services for children with special needs; a bizarre experience. I was simultaneously drawn into a “fresher’s fair” frenzy of grabbing leaflets, carrier bags, free biros, sweets, those useless fluffy things with sticky feet and goggly eyes (which I find on Wikipedia are called weepuls) and signing up for as many email lists as I could find, and shocked at how shamelessly the exhibitors – even the charities – were trying to convince us we needed their advice/mobility aid/car/bed/clothing/toys/therapy. It’s been widely-publicised that bringing up a disabled child costs around three times as much as a non-disabled one. I’m beginning to understand why.
But mostly it left me immensely grateful that we could walk away after a couple of hours, shunning the heaving, evil-smelling canteen, and – bar storing a few information and advice websites that might come in useful one day – say “we don’t need any of that.” Our incredibly supportive team of physio and other therapists has provided us with a top-of-the-range, brand new, hugely expensive chair (albeit modified to fit with the judicious insertion of a washing-up sponge) and a similar floor-based positioning system. Wheelchair services in Edinburgh built us a bespoke cushioned insert for our standard buggy, so that we shan’t need a wheelchair for years to come. A few cheap fairy lights, a space blanket, and some old bubble-wrap provide most of the sensory input that he needs at the moment. We get weekly physiotherapy sessions in our own home and I have the direct numbers of so many health professionals I would be unsure which one of them to call, if it weren’t that I know each of them would be only too happy to point me in the right direction. I’m not sure whether to be grateful I live in the UK, for its NHS; in Scotland, for its greater commitment to the NHS; or in East Lothian, for its specific blend of co-ordinated support and dedicated therapists. Probably all of these.
Am I being complacent? Should I be chasing up intensive therapies at centres the other end of the country? Should we be turning his bedroom into a sensory room, with fibre-optics and an audio-visual system? Am I still being naïve in trusting that the state – and associated charity services – will provide all that we need to keep him comfortable, healthy and happy? I’m pretty sure Amazon knows I now have a disabled child from my choice of reading matter, but that’s about it so far.
I guess there’s plenty of time. Even “normal” ten month olds don’t demand much, yet fast-forward a few years and they’re screaming for the latest toy, the latest video game, the latest trainers. Our little boy is getting a shiny new bubble column for his birthday, so who knows what we might be starting! Maybe one day he’ll fly into a tantrum if we refuse him a top-of-the-range wheelchair with alloy wheels? I can dream.