Change in the House

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World mental health day is a day when the things that dictate my private life on a daily basis are brought to the fore of public discussion. I’ve written before about how most of the way in which people go from suspecting they’re ill, to being diagnosed, to having their life changed by a medical intervention, is actually framed to keep mentally ill people away from the general public and to make them conduct their treatment and their lives surreptitiously to one degree or another. Now, sixty-odd years after the last lunatic asylum closed, the public eye has returned to the issue, albeit in a rather broad sense. Clarification and digression have been attempted by doctors, academics, the parents and husbands and wives of the mentally ill and even a few politicians and diplomats. Mostly though, outside of catching people up on epidemiology (not that there’s anything wrong with doing that) and generalist journalism about how autism is bad, (who knew?) explaining and apologizing for the integration – or lack thereof – of mentally ill people into the general populace has fallen to ourselves alone. So, if there was some kind of cradled light of the revelation that the ‘neuroatypical’ like us can bestow on the current arguments surrounding mental illness, I offer this piece of illumination: change. Change now and stay that way until it’s time to change for the better again.

Life for people like me may, possibly – probably even, be much more comfortable than it was before the change of closing asylums, returning autonomy and perfecting agreeable and respectful language for the benefit of the people who used to be cattle and treated like criminals in this manner but at the time it seemed dramatic. It put entire rooms full of doctors and the methods they worked under out to pasture, it released into the public domain people who we were certain were going to harass and rape and murder us and even in the west, which is the same century had fought a world war against this very notion, it removed power of authority over people who were otherwise powerless to resist authority’s abuses and suspension of their personal freedom – often just because of things they were born to. This was bold, commendable and arguably affected daily life for an unprecedented number of people since public policy gave them the vote in any meaningful way. It’s hard to feel, then, that we’ll achieve anything as bold or dramatic in a short span of time in today’s bureaucratized world where there is any number of lacking precedents or lazy avoidance of policymaking by the people in charge can lock down decisive change on an issue this size into a standstill. It doesn’t matter, we still have to change.

Contrary to popular opinion it isn’t actually the public or the ‘normal’ or the ‘neurotypical’ that desperately need informing of the day to day nature of mental illness, it’s the professionals, the people we think of as most informed and knowledgeable and safe. They don’t know the ins and outs of living day to day with one of these conditions, nor the ways that symptoms and syndromes can ebb and flow to take on the habits and ailments of one another. They know what they’re told, through the admittedly watertight vernacular of published peer-reviewed evidence (though that second P word can mess things up sometimes) and those of their peerage on the edges of treating and intervening get to move to the center by expressing their knowledge this way. Guess who gives them said knowledge. It’s a position that has not become much more comfortable with the advent of self-expression made possible since web2.0.

Counter-wise, the generalist writers and self-appointed ‘health experts’ that have emerged in the same time period have done immense damage to the integrity of arguments made by those who don’t have an officiated background but who do have an extremely valuable perspective – lost like so many elegant, carefully thought out keystrokes on a typewriter amongst an incessant tapping of laptop keyboards the world over. So my readership can be certain I’m being honest when I say that both these groups and the general public that stands between them, all need to participate in a strong degree of change. The purveyors of ways to have a good life whilst also having a mental illness are equally responsible for doing so in a way that cultivates proper understanding, not personal popularity or intellectual appeasement – whether they’re doctors or bloggers. Between those two and the general public, however, that’s a lot of people, can I really argue that everyone but myself should partake in the global change I’d like to see, or that they, regardless of their perspectives or circumstances should take on equal responsibility for that change? No. But they should take some. Just taking a cursory glance around what’s happening in the United States at the moment in terms of healthcare as a right and the policy surrounding it will demonstrate quite clearly how people’s wellbeing is rightfully regarded as an essential function of government and society. Neither can achieve what they want to without the other, the authorities in question and the people asking for their help must foster utter and willful cooperation but it’s easier said than done. When the same debate about national health raged prior to the start of this century with the AIDS crisis, for a brief and glorious moment (just a couple of years before I got my own diagnosis) the public turned a level of scrutiny onto medical professionals and hospitals and epidemiologists that was usually reserved for them to scrutinise their patients.

Neither party will ever come close to being scrutinized to an appropriate degree whilst they assume utter correctness. The ‘healthcare experts’ supposedly giving their readerships the inside track on related matters tend to gloss over the plague of compassion fatigue. The monetization of surgery, inpatient, outpatient and now even accessible medical treatment. The rampant misbehavior of the pharmaceutical industry. And, to mention a personal vendetta, the coddling and bureaucratic massaging of patients with idiosyncratic learning difficulties and requirements into asylums in their own homes, far from the ‘unbearable stressors’ of having a fully-fledged social life, or a marriage or not conducting their daily activities whilst on a semi-experimental cocktail of drugs. Not medication designed for them, not an intervention that would allow them to return to life rather than muddy their enjoyment of it, but made for people ‘like them’ when the professional perception of people ‘like them’ that is, people like me, is still comprised of collective memories of straight-jacketed ‘lunatics’ colonised in a concrete-walled asylum.

You might argue that things aren’t nearly as dramatic now but the laziest elements, the most corrupt elements and the elements least willing to change in the world of medicine are relying on this placation. I took on the task of polemically assessing the issues they wrought on me and people like me to disavow my placation and to state that there’s no reason that the level of change we’ve gone through since the end of the last century, when it was still legal to sterilise mentally ill people, shouldn’t continue. This, alongside writing about my own experiences, was the change I initiated in myself. I’d ask my readership to find the internal resources to change with the times, to attune themselves to the fact that just because people might be in their own homes or on hospital wards or in psychiatric offices, instead of in a crazy house, they may be leading lives dictated by a very severe illness indeed. To attune themselves to the idea that just because someone doesn’t possess bandages and crutches and other visible signs of damage, they may indeed be in a great deal of pain. And finally, to attune themselves to the idea that the perspectives of those people aren’t invalidated by their illnesses, theirs reinforced by them – and when they choose to take a polemical view of the things that are supposed to be improving their situation, they are, in fact, trying to bring about a productive level of enlightenment and reasoning. And that breeds the change I believe we need.

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