Living in the Gap… Invisible Illness & Capitalism
Chronic Illness Severity Scale
I have previously created a scale which aimed to create a more full picture of the possible severity in ME patients. This is shown below, one important group to highlight that drew a lot of attention is stage 1 level 2: Living in the gap.
[Insert severity scale graphic here]
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Unique Position
Living in the gap refers to the unique position of those who are too sick to work without damaging their health, but not sick enough to receive benefits. Thus they are forced to work at the expense of their health and wellbeing.
This position creates a unique social disability under capitalism. Unlike standard disabled oppression, it is defined not by exclusion from capitalism but rather forcible inclusion. Yet quite often it is not seen in the context of disabled oppression.
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Perspective
People living in the gap are normally covered by media from the perspective of healthy people. This means they are seen as the bottom end of "productive" society. The most disabled people who are still worthy because they are still working. However, this story is incomplete and can be quite damaging to people in the gap and those too sick to work.
The idea that chronically ill people are just those living in the gap ignores the fact that living in the gap is the position chronically ill people are pushed to remain in by threat of how terrible life on benefits is made.
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Is it a privilege?
From the perspective of those who have had no choice but to stop working, living in the gap can be a position of privilege. To still have an income, to be seen as a valuable person by society, and to be able to contribute and find meaning through work are all privileges held by people living in the gap.
These are often privileges people living the gap do not recognize because society so often views them only as the lowest "productive" ability of workers as opposed to the most "productive" disabled people.
But it is important to remember that privilege within the framework of capitalism is not the same as legitimate quality of life improvements.
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Quality of Life: Usable Energy
People living in the gap often have some of the lowest quality of life of disabled people, in many ways comparable to those who are severely ill. This is because they have some of the lowest free energy available to them.
A large reason severe and very severe ME are so much worse than mild and moderate ME is that when your energy goes below a certain level you lose the ability to choose where any energy goes. All of it must be dedicated to survival.
For those living the gap, the artificial imposition of monetary requirements forces them to dedicate all their energy to survival under capitalism. This can leave them with similar free energy for socialization, hobbies, and self-care as those who are severely ill. This has a massive effect on quality of life.
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Quality of Life: Pain & Symptoms
Likewise, because people living in the gap are forced to push themselves beyond their limits they often suffer extreme pain and symptoms. While there is an obvious difference between the pain of working through a migraine and the pain of having a migraine so terrible you cannot possibly work both are genuinely terrible experiences.
It is important to acknowledge that symptoms and pain are exacerbated by not accommodating them. When you have no choice but to not accommodate your symptoms, this is in a sense equivalent to having worse symptoms.
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Disabled Differently
While people living in the gap therefore certainly have low quality of life and high symptoms and pain it is also important to note the way that this suffering is different to other disabled sufferings.
Living the gap is ultimately a social disability. These people would have the ability to live a comfortable high quality of life if they were given the monetary resources to not work and to focus their energy solely on symptom management and self-care.
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An Unreachable Privilege
People in the gap do in some ways have a privilege when compared to those whose symptoms are too severe to work and who are already dedicating all their effort to symptom management. The privilege to not need medical advancement to live a good life, only social support.
However, a single person cannot change capitalism. Therefore it is wrong to say that people living in the gap have a more "fixable" disability on an individual scale. The privilege people living in the gap have to potentially alleviate their suffering could only be exercised hypothetically through massive collective action and systemic change.
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Internalized Ableism
In fact, in order for people living the gap to improve their life, it is key for them to acknowledge their own internalized ableism. To stop trying to value themselves by the impossible metric of capitalist productivity and acknowledge their disability. When they do so they will realize that stopping work is not the worst threat to them but rather the total loss of their health. In some privileged cases, this may allow for a reorganization of their life.
However, the disabled community must also remember that just because someone living in the gap is able to recognize their life should not revolve around continuing to work and that they should be able to stop does not change the capitalist reality we live in. We must acknowledge the extreme suffering caused by living in the gap and that just because a disability is social does not make it any less real.
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Millions Missing with MECFS many are Living In The Gap. For the Millions More with Long Covid many more are slowly being squeezed by this position, feeling unable to Stop Rest Pace until Post Exertional Malaise and Post Exertional Neuroimmune Exhaustion eventually force many of them into severe ME with no choice but to stop.
When I posted @m.e_and_more's unofficial severity scale I had no idea just how much the phrase "living in the gap" would resonate. But for so many spoonies with chronic illness and disability, the term captures what many other labels like invisible illness do not. That this isn't a life choice, it isn't an "ability" to work, its a massive gap, inefficiency and flaw within our social system.
This post is deeply entwined with the ideas of societal disability and bodily disability. Two both valid ways in which disabled people suffer. Societal disabilities like autism are caused by lack of accommodation. Bodily disability like pain is caused by a medical condition. Most of the time people with bodily disabilities want healthcare and research. While people with societal disabilities was accommodation. Almost all disabilities have both bodily and societal aspects, although some fall much more towards one side.
Living in the gap is a societal disability imposed on those with a very bodily disability, chronic illness, chronic pain and chronic fatigue. It hides its ability to be accommodated under medical symptoms and diagnoses. We tell these people they just need a cure, they just need better healthcare, their doctors have failed them. This is in a sense true, all of those things could fix the problem. But we don't need a cure or better medicine to give these people quality of life. All we need for that is basic compassion and the ability to look beyond capitalism and value people for their life, joy, and experiences rather than their input to GDP.
