Wheelchair Vista on the lasting effects of being doubted.
Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.
I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.
When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.
Ella Sumpter talks about fluctuating mobility levels and reactions to her wheelchair use.
I have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I have so far been left out of.
I have a problem though. I have a very large psychological barrier to actually using it.
So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I’ve already blogged about using a walking stick and my fear of abuse as well as fear of people thinking I use a stick to look more ill and claim extra benefits.
Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.
I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.
As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.