On pushing yourself and ignoring self-care as a disabled person

 This is something I've discussed a lot with my friend and fellow scholar Christine Bylund. She's an ethnologist, I'm a philosopher. She's got cerebral palsy, and I'm mad. But we have some common experiences of having pushed ourselves hard to get where we are now, while other people blame us for doing so (yeah, yeah, you don't want to call this blame - but I don't care what you wanna call it. I say "blame" anyway). Other people will blame you for supposedly internalizing destructive societal norms about the importance of hard work and grit. Other people will tell you that you ought to let go of these norms, and get better at self-care. This is because other people erroneously believe that this is always possible to do without serious negative consequences. 

1. Deterioration of the welfare state

Many western European countries that used to have strong welfare states and where strong job security used to be the norm have changed drastically over the last decades. Sweden is one of those. 

Bylund's doctoral dissertation features interviews with three generations of disabled people; the oldies who grew up in institutions, the middle-aged ones who grew up in a time where they had rights and real possibilities to live normal lives, and the young ones who have seen their rights seriously eroded - not so much on paper as in practice.
Laws aren't magic. If an entire system and most of the people who work there habitually ignore legal rights and entitlements because cutting costs is considered more important, there may be nothing that the system's victims can do about it. Sometimes, initially dismissed disabled people eventually get what they're entitled to through lots of stubbornness, information gathering, and legal council. Still, at the end of the day, you're always at the mercy of the people in charge; unless they listen, you can't force money, accommodations or assistance out of them. 

Nowadays, if you don't have a job, you might not have any money at all. You might lose all of your income, and lose your home. You might lose everything - especially if you're chronically ill or disabled.
Perhaps people close to you have a little money with which they try to help as best they can. Perhaps you can survive by the good graces of your parents or romantic partner. But as any feminist from the last few centuries can tell you, being wholly financially dependent on another is not without problems, even if their money is enough for both of you.

There's this well-known phenomenon where people think, of various calamities, that it won't happen to them. No particular reason, they're just irrationally certain that they will remain lucky. In a similar vein, many people apparently believe that no serious calamities can possibly befall people they know, who are perceived as being sufficiently similar to them. Therefore, many normate scholars believe that chronically ill or disabled scholars whom they know and have lots in common with, cannot possibly lose everything. Subsequently, they can't grasp why those disabled people keep struggling and pushing themselves instead of doing proper self-care.
Well. Everyone who ever lost everything had people who knew them; people who thought that nothing this bad could possibly happen to someone they know. Didn't save them.

2. In my best interest

Before I got my current job, I spent years in a downward spiral of deteriorating mental health which I (eventually in vain) tried to compensate for by taking more and more pills, as I moved from one fixed-term job to another. This wasn't because I thought going on sick leave would be shameful because of internalized job norms and blablabla. In the late nineties, I was on sick leave for six months at one point. I've been on sick leave for a month or two later than that. But nowadays, going on sick leave for mental problems is risky. Försäkringskassan (the public health insurance agency) may hound you - you should get back to work soon! You've been on sick leave long enough now! Time to recover already! Time to get back! - so much that the stress makes you sicker. And what happens if you go on sick leave and only get sicker and sicker? Eventually, they might simply kick you out of the system. If you're in terrible shape and absolutely can't work at this point, well, too bad - you've lost everything (see above). 

However, thanks to how I continued to push myself, combined with some much-needed good luck (we always need luck too, it's never all about your own effort), I finally landed my current job. I finally got job security, financial security, a generally idyllic and far less stressful life. I could finally begin to recover. 

It sucks balls - big, stinking donkey balls - that society looks like this. But given the way things are, I did what was in my best interests. Don't blame me for pushing myself "too hard" - blame society. 

3. In capitalism's best interests?

Occasionally, I come across the following idea: By dropping out of school or the workforce, we somehow hurt capitalism (I should add that it's people who see hurting capitalism as a worthy goal who claim this, not liberals and conservatives who worry that capitalism might get hurt). If this were right, there would exist a tension between on the one hand looking after your own interests and push yourself so you don't lose your income and home, and on the other hand fighting capitalism by dropping out.

This is wrong. Single individuals can't hurt the system by dropping out of job/school.
When most or all workers in a company strikes, the company is hurt. If most or all Swedish citizens went on strike at the same time, the nation would be hurt. Whether this is a good idea for a revolution really depends on how the entire plan would look and what is supposed to come after, but there's no doubt that it would have drastic effects. But single individuals can't hurt capitalism as a system by dropping out - and I'm not saying this merely because everything a single person does (unless that person holds a powerful position) has negligible effects. 

People have argued that it's pointless to go vegan, or pointless to go by train instead of plane, since the consequences of a single person's choices are negligible. However, some people who make that argument go on to say that we should, instead, focus on voting for political parties with good environmental policies (animal welfare policies, etc.) and support the right organizations. But the consequences of individual votes and individual memberships are negligible too. For my own part, I'm of a more Kantian than consequentialist bend, so I don't fret over negligible consequences; there are also consequentialists who try to show that the right kind of "moral mathematics" support the importance of individual choices after all.
In any case, going vegan, taking the train, voting for decent political parties, etc., are all importantly different from dropping out of school/job. Whereas, for instance, going vegan means that the meat industry gets a little less money than if I had continued to buy meat, capitalism as a whole isn't even a little hurt when I drop out. The meat industry doesn't need vegans, but capitalism needs the poor, desperate and unemployed. 

First, demand for workers isn't constant, it varies over time. Employers prefer a scenario in which there are unemployed, poor, and desperate people they can hire straight away when they suddenly need more workers, to a scenario in which they must outbid the competition to increase their staff.
Second, it's advantegous for employers that people who already have a job are afraid to lose it - scared workers will work harder and complain less. In addition to their function as "spares", unemployed, poor, and desperate people also serve as cautionary tales: Look! This is what happens to people who claim they're too sick to work. Watch and learn. Watch, and struggle for another day.

If you work or study, sure, you're a cog in the larger capitalist machine. But if you drop out, you're still a useful cog.

To sum up: Stop blaming disabled people for allegedly pushing themselves too hard. Blame society. Or better still; get politically active yourself and try to change things.

Review: Robert Chapman's Empire of Normality: Neurodiversity and Capitalism.

Everyone has problably witnessed, or even partaken in, debates over neuropsychiatric conditions like autism and ADHD, or common psychiatric conditions like depression and anxiety disorders. Why are so many people diagnosed these days? And then you get two camps who offer two radically different answers to that question.

First, you've got the camp who says that there's rampant over-diagnosis going on. People get diagnosed on really flimsy grounds these days. Does seven-year-old Timmy find it difficult to sit still in school? Slap an ADHD diagnosis on him, and fill him with stimulants! In the good old days, we knew that this was perfectly normal - lots of kids find school boring and have trouble sitting still, but nowadays, they all get diagnosed. Does little Lisa have trouble making friends? Is she, well, just too nerdy for her own good? Autism! No one is allowed to just be a little nerdy and a little weird these days, it's gotta be autism! Did Annie cry her eyes out after her boyfriend broke up with her? Depression! Bring on the SSRI pills! 

Then we've got the other camp, protesting that it's not all that easy. They point out, quite accurately, that most struggling kids and their parents, most suffering teenagers and twenty-somethings, has to suffer and suffer and fight and fight to get diagnosed. It often takes ages before someone can get access to medications and/or special accommodations. Much less accurately, they'll insist that just as many people struggled in the past, only then their struggles weren't recognized as legit by the mental health care system. Instead, the "pro diagnosis camp" claim, the kind of people who nowadays get diagnosed with ADHD/autism/depression/anxiety were labelled freaks, changelings, witches, or they would be locked away in institutions, or they would just go kill themselves.
This is plain false.
About 10% of US childrens are diagnosed with ADHD. Almost 3 % are diagnosed as being on the autism spectrum. Over 18 % of the US population are, at some point in their lives, diagnosed with depression. And these are just three common diagnoses - there are so many other psychiatric and neuropscyhiatric conditions. Of course, there's plenty of diagnostic overlap - you can't just add these numbers up. Nevertheless, the Johns Hopkins institute estimate that 26% of all Americans have one or more mental health conditions, and the WHO estimate that the same goes for 1 in 8 people worldwide. Thus, when the "pro diagnosis camp" claims that the same people who would have gotten diagnosed today, were labelled witches and burnt at the stake or institutionalized in horrible conditions or simply killed themselves in the past, this is blatantly false - it's not the case that 12-26% of the population regularly suffered these fates, until modern psychiatry came around to save us.

However, the idea that either there's rampant over-diagnosis and people are diagnosed and treated on the flimsiest grounds, or else the number of people with (neuro)psychiatric disabilities remain constant through time whether they get helped or not, is a false dichotomy. Chapman argues, in Empire of Normality, for a third option: present-day capitalist society keeps raising the bar for how productive, efficient, socially competent, focused, and overall how normal you gotta be to keep up. As the bar goes higher and higher, more and more people fall below it, which results in actual, serious suffering and struggles.

I've occasionally seen radical disability activists claim that disability as a concept didn't exist until the industrial revolution. This claim seems both weird on the face of it, and contradicts some historical research I'm acquainted with. Chapman makes the somewhat weaker and much more plausible claim that with the industrial revolution and arrival of modern medicine, the view on disability became much more streamlined. In pre-industrial society, people who would be considered disabled today could sometimes find themselves a niche on the farm where they got along just fine - for instance, a blind or deaf woman might still be able to do traditional female farm chores. Other people might be considered scary freaks or just plain useless - whereas some disabled people were seen in a positive light, as having a special connection to God, and subsequently getting an extra privileged treatment. In short, it varied wildly.
With the industrial revolution and the arrival of modern medicine - the latter of which, Chapman hastens to stress, did save countless lives and drastically improved the quality of life of many - the view on disability/normality became tightly connected to productivity in standard work conditions. If you weren't fit to work a normal job at a normal pace, you were broken and bad. 

Even today, many medical diagnoses, in particular within the psychiatric realm, are explicitly defined in terms of distress and dysfunction - and the latter, in turn, tied to your (in)ability to work a normal job and/or study in the normal educational system. If you can't do this, at least not without special help and special adjustments, you're deemed disordered or disabled. A natural consequence is that more and more people will be judged disordered or disabled as the demands go up, up, up. Thus, both these things can be true:
1. It's very difficult to get a (neuro)psychiatric diagnosis, and get access to medication, special accommodations and other kinds of help. You need to suffer and struggle quite seriously first.
2. Many, many people who get diagnosed today wouldn't have qualified for a diagnosis if they had been born fifty or a hundred years ago - they'd have been considered normal back then.

Now, popular media do sometimes publish optimistic articles about how employees with autism and ADHD might help companies increase their productivity. People who have trouble managing many jobs and many social contexts might find their special little niche in which they thrive and help their employer make more money. However, this will never apply to more than a small subgroup of all people with (neuro)psychiatric diagnoses. There will still be an ingroup of people deemed useful and productive by our capitalist society, and an outgroup deemed useless and costly, because they demand all this extra help and special accommodations and mental health care. To really change this ingroup-outgroup dynamic - rather than just move a few individuals from one group to the other - we must change society quite drastically.  

In a capitalist society obsessed with productivity and making more and more money, Chapman writes, there is an inherent tension:
On the one hand, the bar for how socially competent, cheery, stress-resilient, flexible, fast-thinking, hard-working, etc. etc. employees must be, keeps rising. This means that over time, fewer and fewer people manage to reach the bar, and thus fewer and fewer people are considered normal/neurotypical. More and more people are diagnosed with a neuropsychiatric disability because they fail to live up to society's demands, and/or diagnosed with a mental illness as the ever-increasing demands causes them to break down.
On the other hand, a fiercely competitive capitalist society can only afford a certain number of sick and disabled people, can only afford to let a certain number of people live on welfare, can only afford a certain number of employees to get special accommodations and a certain number of students extra help in school. 

So far, the neurodiversity movement has operated largely within a liberal, rights-based framework, and for some time, people made progress by insisting that neurodivergent people should be seen as a marginalized group that require equal rights. But nowadays, this progress seems to have, by and large, come to a stand-still. More and more parents of neurodivergent children as well as adults with (neuro)psychiatric diagnoses find that it gets increasingly difficult to get the special help and accommodations that you're legally entitled to on paper. Now, many people seem downright puzzled by this development. They seem to think it's just some large accident that this happens, and that it should be possible to correct without any large-scale changes to society.

No. This tension is built into our present-day capitalist system. It's built in both that more and more people qualify for diagnoses because they simply can't manage the normal school system or normal job market without all kinds of extra help, and that this extra help will be denied them, because there's a limit to how many ill or disabled people the system can afford. 

Chapman, unfortunately but understandably, doesn't give us a recipe for revolution towards the end. But step one is to, at least, recognize that this tension is built into capitalism. It's not something we can just fix by providing people with better information about various diagnoses and neurodiversity. Some kind of more thorough-going societal change must take place.

I recommend this book to anyone interested in issues of neurodiversity, psychiatry and capitalism.