Some of you may be aware of, or even participated in the sort of disability awareness course where you have to use a wheelchair for a bit or use glasses that mimic tunnel vision. While these are well intentioned, they are about as much use to understanding real disability issues as covering your face with boot polish for a day and wandering about pretending to be black.
On the surface, these seem a good idea. Trying to navigate in a wheelchair does give you a tiny change in perspective. Wobbling about with glasses that make you dizzy may make you think. But disability is more than that. It’s not just the wheelchair, crutches, guide dog or whatever.
Disability comes with a whole bundle of stuff, tangible and intangible.
I’ve not seen any of these ‘simulations’ that successfully mimic the fatigue that a lot of disabilities bring. As well as conditions where fatigue is a factor such as ME/CFS and MS, just getting about with a disability can involve substantially increased energy use. An amputee with a single below knee amputation can use between 125% and 150% of the energy a non-disabled person would use to cover the same ground. Amputees generally walk 20%-25% slower than non-amputees so to keep up have to expend even more energy. Over a day this all adds up. As you become fatigued, your gait can become more uneven, resulting in even greater energy consumption. As a result, by the end of what’s a ‘normal’ day for a lot of people, you can be utterly knackered.
Another significant disabling factor that’s not well simulated is pain. Again this can be a component of the disabling condition or a side effect of things like callipers, prostheses or a wonky gait. It’s fairly common for a wheelchair to give you a sore backside or back issues unless you get the seating right in terms of posture and pressure management. Pain is distracting, emotionally wearing and fatiguing. Pain medication that is effective can cause drowsiness, making the ‘cure’ as disabling as the condition.
Living with a disability can be fairly stressful. You plan things but never know until you get to where you are going if a place will be accessible, will the staff be helpful etc. The interaction with professional agencies both health and non-health is also stressful. This again generates fatigue and is difficult to simulate ethically.
One thing that’s never simulated (as far as I know) is anything to do with continence. Imagine travelling somewhere and not knowing if there’s going to be a toilet you can use anywhere near. If there is one, will it be being used as a storage cupboard so you can’t use it even though it’s there? Will it be being used by someone who could use any toilet but they are too lazy or ‘important’ (I’m looking at you Iain Duncan Smith) to seek one out? When your distended bladder finally gives up, how will you get changed, get home and cope with the embarrassment?
Most of these ‘having a go’ sessions take place in a calm, ordered and supportive environment with the facilitator on hand to assist if things get too tricky. Real life isn’t like that. Disabled people regularly get abused in the street, refused service for all manner of spurious reasons and other everyday humiliations. This all adds to the burden of living with a disability.
Finally, these ‘have a go’ events are short lived. Half a day, or even a day in some cases and then you can take the blindfold off, unplug your ears, leap out of the wheelchair and go back to your life. For the vast majority of disabled people, we can’t. We have to live with this all day every day. We struggle through today, knowing we’ll have to do the same again tomorrow, the next day and the one after that. That knowledge that this is how things are and they are only likely to worsen over time is impossible to simulate. It’s something you can intellectually appreciate but the actual knowing; the awareness and the emotion that goes with it can only be acquired through living with something long term.
Events like this might go a tiny way to giving an inkling into the raw physical access needs of some disabled people but they aren’t pitched in this way. I’ve spoken to people who come out of them believing that they now ‘know what it’s like to be disabled’ and then tell me what it’s like to be me and what I need. This is as spurious as smearing cocoa on your face and imagining you know what it’s like to be black. It’s blacking up (or cripping up if you prefer) and it’s tokenistic. It’s the sort of thing public facing organisations do to show they are ‘listening’ and meeting the needs of disabled people. That’s rubbish. If you really want to know what disabled people need, ask them. They are the experts. Ask lots of them too as they are all different. I’ve lived all my life with a disability but I really only know about my type of impairments, I don’t know about being visually impaired, deaf or having a long term health condition. I wouldn’t be arrogant enough to assume that I did and offer an answer on behalf of those people. Open and proper engagement with a range of disabled people is the only way to develop truly inclusive service provision.