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Chronic Illness Inclusion Project blog: Spoonie Utopia: an inclusion thought experiment

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:
More at http://inclusionproject.org.uk/social-model/spoonie-utopia-an-inclusion-thought-experiment/
 

Snowdrop

Rebel without a biscuit
Messages
2,933
All of a sudden in this sci fi world I'd be able to communicate with my country's/provinces health and other social services through email and there would be a dedicated person responding to me. And the process of finding how to make first contact would be transparent not something hidden in a labyrinth of details.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I just came on PR to share some Chronic Illness Inclusion Project stuff, so great you've got there first @AndyPR :)

@Snowdrop this seems like something that should be very achievable, my GP surgery did this for a few months but seem to have stopped it again. I could have doctor appointments via email and you could specify which doctor should read it. This was much more accessible than going into the surgery and I could take time to say exactly what I wanted to say within the word limit (though to be fair they do have phone appointments still, as long as you don't need physical tests).

The other thing I came here to share is the chronic illness "takeover" episode of BBC Ouch! with Catherine Hale from our project and Natasha Lipman http://www.bbc.co.uk/programmes/p05...al&utm_source=twitter.com&utm_campaign=buffer

I'll just check this hasn't been shared elsewhere and start a thread.