Spoonie Utopia*: an inclusion thought experiment
Jenny Lyus imagines: "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:
The government is quick to put in place a basic universal income calculated to be more than average housing, a healthy level of heating and organic food. Everyone who works pays tax and still receives the universal income. They find that this is no more expensive overall (apart from to the very well off). There are no forms or assessments to receive the income, it is paid each month by direct debit to every citizen over the age of 16.
The Spoonie community is overjoyed. The severely and moderately affected no longer need to worry about basic financial security. There are no forms which make you reflect on how ill you are. There is no-one trying to prove you are lying about your illness. For those who are mildly affected they can do bits of paid work, as and when they feel well enough, and it is extra income. There is no anxiety about Changes in Circumstances and jeopardising financial security from trying to work. Everyone in the country receives the same and so disablism and resentment about benefits evaporates. Before long the statistics show that Spoonies contribute more to society (in all senses not just tax) under this system.
Pacing (an activity management strategy) is seen as the de facto way of life. Spoonies are often invited on talk shows as gurus to share wisdom about how to budget energy and avoid burnout. Employers expect people to work from home, unless it can’t be avoided. Most meetings are online. It is socially unacceptable to work long hours and workaholics are provided with support to break the addiction. Since everyone is on the Citizen Wage many people are more relaxed about working and work part-time. People find they often achieve just as much. Viruses don’t spread as easily because less time is spent in-person with other people.
Multiple Chemical Sensitivity is taken very seriously and those affected run a think tank which leads to the banning of many harsh chemicals and high VOCs. Food is only considered food if it is organic or wild (in fact the word organic is dropped in common speech, as it is a given). It is mandatory for restaurants to include Spoonie friendly gluten/dairy/refined sugar free options. Noise pollution laws are tightened. Lighting in public spaces is dimmed and florescent lights are replaced. Venues start to host acoustic music and comedy gigs in the afternoon, to cater to people who can’t socialise in the evening. It is acknowledged that physical accessibility isn’t just about access to space but also about speed. There is a dedicated Spoonie transport (taxi) system to get people in and out of situations quickly in order to save energy.
A new professional role of Medical Advocate is set up with a team of people with medical training (such as nursing) visiting all Spoonies at home to do a health review. Their role is similar to a keyworker whose sole aim is to get patients the best possible treatment. They thoroughly assess whether any relevant tests have been missed and whether any treatment approved for other conditions may be relevant for their patients. They then put the case for this treatment to appropriate doctors. Medics are generally obliging because they have better information about Spoonie conditions and Spoonies are very high status in this society. Advocates co-ordinate a team of medics around the patient and arrange appointment times based on body clock and Pacing requirements. Sometimes Advocates have the appointment in place of the patient in order to save energy. Advocates are able to do most tests on their home visits. Healthcare is free at the point of service, including prescription drugs, some alternative therapy and prescribed nutritional supplements.
They arrange home-help as it is needed, including cooking healthy meals. Advocates also put in place home adaptations such as automated systems for example so that people can open curtains, turn on lights, open the front door from bed when needed. There is considerable investment in advancing technologies which save energy. Anyone can request accessibility equipment such as electric wheelchairs.
Under this Pro-Spoonie government I still don’t feel well but I do feel better about myself and my role in society.
This is just my personal thought experiment, but sometimes imagining utopias helps us identify what needs to change in the here and now.
What would this government do for you?
What does your version of Spoonie utopia look like?
by Jenny Lyus - this post is edited and reposted from Jenny’s personal blog Tips for ME.
Jenny is a disability rights and M.E. activist. She is Co-Investigator on our Chronic Illness Inclusion Project. Recently Jenny has been using her limited energy to agitate for better ME research and against inappropriate clinical guidelines, with ME Action Network and the stopGET campaign...Read more.