Under this Pro-Spoonie government I still don’t feel well but I do feel better about myself and my role in society.”
*‘Spoonie’ is an informal term for people who live with chronic energy limiting illness.
I am just home from going out in my new wheelchair. It was great to go out socially and not to the doctor’s! In my city, physical accessibility for people in wheelchairs is good, apart from wonky paving stones. The restaurant and the art museum we visited were both completely accessible. I found people were very helpful too, they even seemed to cope with the complexity of me being able to get out of the wheelchair (I used to feel very nervous about doing that).
Single Issue Pro-Spoonie Government
However, it got me thinking again about the challenges of effectively removing barriers to participation for people living with chronic illness. Possibly the best way to think about this is to engage in a thought experiment:
Imagine that the next election results in a government whose top priority is people with energy limiting, chronic illness (stay with me here this is like science fiction!).
Obviously they invest in biomedical research straightaway, but there will be a time delay before there is effective treatment for everyone.
What policies (or public service announcements) would they put in place to enable us to participate as much as possible, while feeling as well as possible?
Please add your ideas as comments. Here are some of my imaginings: