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:

Citizen’s Wage

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.

Work Culture

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.

Environment

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.

Medical Advocates

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.

My Life

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? 

Get Involved buttonGet involved in our research project if you would like to have your say on what a chronic illness-friendly society would look like

This post is edited and reposted from Jenny’s personal blog Tips for ME see https://tipsforme.wordpress.com/2016/07/06/spoonie-utopia/

Read more about Jenny Lyus here

Please share:

13 thoughts on “Spoonie Utopia*: an inclusion thought experiment


  1. I always think it’s valuable to ensure that governments are responding to our “third-world problems” even as we encourage them to do better by all of our other needs (“first-world problems”).

    I’m hoping you’ll allow me to share my story as an example of what I mean.

    Please Google: Destruction of a Disabled Man in Colorado

    I lost everything — my home, my life’s savings, and my health — because I’m invisibly disabled, and I needed (and asked) to be able to sleep in my first ever, brand new home.

    And now I’m in horrible shape, medically.

    In the US, we use the term “protected class” to describe people with disabilities.

    I wasn’t protected.

    If we aren’t safe … much of the rest feels like a dreamlike luxury … no matter how important those issues are, too.


    1. Hi Neil

      Sorry to hear your experience. The repercussions of chronic illness are far reaching for many of us, and I think this is often missed in general awareness.

      This post is a thought experiment, so by its nature will address “1st world problems ” as well as more fundamental issues. The idea is you then think backwards from that utopian future to our current situation, and what needs to change, in order to bring that type of future into reality. It is a useful tool to also identify the extent to which barriers to a good quality of life are located in our sick bodies, versus in a society which doesn’t adequately support our requirements. For chronic illness disability this is perhaps more complex than for some sections of the disability community, where barriers can be more clearly eliminated at the society level, by appropriate accessibility adjustments.


  2. Hi, thanks for this – lots of good ideas. I would want to add something about accomodation for people with MCS and Electrical Sensitivity – and wifi free public spaces. Also something specifically about facilities for people who have sensory impairments and other disabilities as well as a chronic illness. And perhaps special mention of friendship schemes for people who live alone.


  3. Work is quite definitely at or near the top of the list of barriers to inclusion. For instance, what of the people with chronic illnesses who can no longer accept freelance work because when the next severe flare-up comes along, and they are forced to take another lengthy break from work, their Employment & Support Allowance will only be payable at the JSA rate for the first 13 weeks of the claim? As disabled people with complex needs, they simply can’t survive on this. They will also be required to fill in another 50-odd page ESA claim form, at a point when managing basic functions such as eating, washing and toilet needs may be extremely challenging. It’s just not worth the risk.

    So what about the Permitted Work Scheme? It doesn’t work for freelancers who can’t predict how much (if any) work they’ll be offered, and what rate it will be paid at. Who might well go weeks with no work at all because their long-term illnesses mean they’re unable to build up their businesses consistently, but then be offered three contracts at once. Who have a lifetime’s specialised experience that means work is sometimes quite well-paid, but who is also keen to support new entrants to the industry who’re unable to pay very much. Who have the expertise to tackle a very wide range of tasks, which are extremely difficult to label under a single, meaningful job title.

    What is that person supposed to write on a Permitted Work form, designed for claimants who do regular hours on an employed basis in a clearly-defined role?

    Until problems like this are addressed by our imaginary government, work is simply unfeasible. It’s nothing short of a tragedy that people with significant skills are effectively barred from the workplace, because their households don’t have enough income to help absorb the shock when they return to claiming benefits.

    Part of the problem is the inflexibility of the benefits system, which of course will only get worse under Universal Credit. Decades ago, employment advisors – skilled, well-trained civil servants – were credited with the ability to work with claimants on individual solutions. The blanket assumption that all benefits claimants are either lazy scroungers or outright fraudsters had not yet been applied. There was no need: skilled, well-trained civil servants working with people face-to-face can differentiate easily between people with no intention of working and those with genuine barriers to employment.

    The basic income appears to be the only workable solution. It is not a disincentive to work; in fact, quite the opposite. It offers the safety net the welfare system was originally designed to provide, and the incentive for people to improve their lives by getting what work they can, when they can, without the fear of being penalised for doing so when they’re ill. Let’s be realistic: those with no intention of working, or who try to defraud the taxpayer, will continue to attempt to do so whatever regime is in place. Whilst ever we’re unable to look beyond them, the system will continue to fail even larger numbers of people who really want to contribute but are unable to do so.


  4. I think this is a great idea. Thinking about what has been making life difficult for me recently, I’d like to add two small items:

    Spoonie friendly pubs, cafes and restaurants would be good (a Good Spoonie Guide!). By that I mean, no blaring TV or music, mobiles on silent (any calls have to be taken outside), soft lighting, a quiet space/room for those who suddenly need it). There are so many places I cannot currently go as I know there will be too much noise etc, so I end up being excluded from meeting up with friends in these places.

    Society gets educated that spoonies can hop in and out of wheelchairs/scooters, that these are aids to help us take part in society and we use them or not whenever we need. No more abuse for people who perceive we are lying/cheating about our illness.


  5. Active help in finding creative outlets for spoonies that could range from adapted gardens kitchens all the things that none spoonies do and take for granted.
    I love gardening even as a spoonie I still need exercise which gardening can give in small doses, raised beds Astro turf lawns, ramps are all things I dream off but are not available to me. Growing things flowers vegetables are a source of enjoyment and fulfilment all around very healthy.
    Kitchens being weak foggy brained forgetful makes cooking our own food an issue, timed devices that switch off after a preset time, no more burnt offerings healthy food more often not microwave meals. The world where gadgets are the norm and provided as a matter of course, just to live that bit easier to stretch out our energy just that bit more


  6. Very interesting scenario!

    I believe that the very first, essential step would be the Universal Income (for everyone). Most if not all of the invisible illnesses come with anxiety about the future and the terrible knowledge of not having resources. Having a no means-tested Universal Basic Income for each citizen means that everyone would be able to have a decent living living with no fear – more money would be spent and the economy would thrive, and those with good earnings would have extra!

    No one would suffer, ever, from Universal Basic Income.

    And without that stress, that anxiety of not knowing whether one can provide food for oneself (not to mention a family) or a roof over your head – the people with chronic invisible illnesses would be able to contribute to society in all the ways possible to them.

    Other help, like the Home Medical Teams, would be great, absolutely. Work processes altered, when possible, to accommodate working from home and working for the hours one is able to.

    But I do firmly believe that the Universal Income would be the Great Equalizer, diminishing (if not effectively making disappear) most of those signs that make one Other (to despise, to accuse of laziness, to make into a scapegoat).

    Thanks for your thoughts!


  7. The term ‘Spoonie’ really doesn’t help. I always found Spoon talk rather icky and the metaphor makes no sense. A spent match, burnt out by the discharge of energy or the flare is an apt analogy. Also good to hear the rallying message to use your energy according to your own lights. Instead of the tameness of conserving ‘spoons’, I’m usually trying to keep my remaining powder dry and restock the arsenal. A step towards Utopia – less passivity, more straight-talking. http://trexismyspiritanimal.com/2016/12/20/matchstick-theory/


    1. Over the course of this project we’re hoping to build on ideas such as Spoon Theory (and other concepts like the Social Model of Disability). It seems like many of us feel that existing concepts like these communicate important ideas, but not the full story about chronic illness disability. Some of us will hold this tentatively, and yet still identify as a Spoonie, whereas other people will prefer to not use the term Spoonie about themselves. There are likely to be other people who feel that Spoon Theory is entirely adequate to describe their experience and therefore it is very useful to them. It will be interesting to find out more about these different perspectives.

      Matchstick Theory is an interesting addition to this debate, thank you.


  8. The Universal income would be a great start, as long as inflation from greed doesn’t make it worthless.
    I’d love more and better simple adaptations. Affordable gadgets that make life in the kitchen easier (my oven, grill and hob work all on timers thank goodness!), slopes on ramps that don’t look like we are expected to scale mountains, a range of clothes in shops that fit different shapes, tills fitted with sign language recognition. And everyone trained in basic disability at primary school (with more depth at secondary) – using a wheelchair, deafness awareness, mental illness, etc.

    And here? Like some others, I don’t find the spoon theory fits well. (Apart from anything else in a good week I can borrow energy from tomorrow if I have to – I use energy that takes me below any reasonable level by drinking coffee and pushing myself, and for the next two or three days I struggle to even get from my bed to the loo.)


  9. I think all these suggestions are really good so far. I would add two issues (apologies if already noted): a mass house building programme (which benefits everyone, particularly young people!), with a significant proportion of adapted housing available according to needs and with an understanding these might change over time, for those with degenerative diseases for example. The second issue is public transport. The bus system isn’t fit for purpose as it stands, with baby buggies standing off against wheelchairs and rail providers reserving the right to refuse to accommodate wheelchairs on certain services. I think the issue of work can be better addressed if we redefine what is meant by work, what ‘counts’. Feminists have argued this for decades, to take into account unpaid caring, but many ‘spoonies’ I know (I dislike that term too) are incredibly creative. Creative and imaginative output surely belongs in the category of productivity, enriching individuals, communities and society – surely this deserves equal recognition as ‘work’. Or maybe we need to ban that word and come up with a new term altogether!


  10. What a wonderful idea! I am a caregiver and have also been very involved in working with and teaching (at the university level and via my own educational company) about chronic illness. My dream is that everyone (people with illness and people without it) understands and appreciates the value of every kind of life, that people with illness are not ignored, martyred, pitied, or “fixed.” Instead they are treated with respect and interest by others – and themselves – regarding both their experience with illness and their intrinsic being.

Leave a Reply

Your email address will not be published. Required fields are marked *