Friday, August 26, 2011

The Disability Hierarchy 3: Only Yourself To Blame

Seldom went such grotesqueness with such woe;
I never saw a brute I hated so;
He must be wicked to deserve such pain.
- Robert Browning, Childe Roland to the Dark Tower Came

Healthy-living is not a moral duty and if it were, everyone's a sinner. However, in order to be an acceptable disabled person, you must be seen as having done everything within your power to be healthy. You can't be merely an innocent victim of misfortune, you must be immaculate.

It is shocking how deep this goes and how hard some people will try to absolve themselves of responsibility. Some people reach for bastardised religious and New Age ideas around karma, sin and laws of attraction which state that disabled people either did something to deserve it or else subconsciously wished it upon themselves. Many more healthy non-disabled people believe that they are personally responsible for being in good health and therefore people who are not simply can't have tried hard enough.

I guess this performs a few psychological functions. One is to make non-disabled people feel safer about their status – in the same way that believing that money is fairly distributed makes wealthy people feel safe. The second is to make non-disabled people feel superior. And as such, even some disabled people indulge in this behaviour.

The way this effects treatment of disabled people who are considered responsible for their impairments is absolutely horrendous. It is sensible that ongoing behavioural problems should be taken into account when it comes to certain medical treatment, but the Minister for Disabled People's repeated statements about alcoholism and Disability Living Allowance strongly imply that someone with severe impairments is simply not disabled if they have addiction.

This sort of thing is massively inconsistent. Someone who becomes paraplegic in a sky-diving accident rates higher than someone who contracts emphysema after a lifetime of smoking, who in turn rates higher that someone who contracts HIV from unprotected sex, even though all three were engaging in morally-neutral risk-taking activity. How someone got sick has no bearing on their experience of functional impairment or disability, and yet I once saw folk on a disability messageboard reject a newbie who had HIV on the grounds of “you can't be disabled if it's your fault.” *

Regardless of your impairment, being significantly overweight brings you right down in the hierarchy, despite the fact that obesity is a very common and an obvious effect of restricted mobility, let alone metabolic disorders and the side-effects of many medications. If you're fat, people - sometimes strangers - will openly speculate that if only you lost weight, your physical health would improve, your brain chemistry would adjust, your genes would rearrange themselves, your limbs would grow back etc.. Whilst our culture regards fat folks as universally unhealthy, it also regards them as magically immune to all medical conditions which are not related to being fat. Since fatness is considered a result of greediness and laziness, if a fat person has an impairment, it has got to be his or her fault. Find any discussion about disabled parking on a news website and there will be complaints about the people having disabled permits just because they're fat. In many minds, fat people and disabled people are two mutually exclusive groups.

And of course when it comes to genuine over-eating, whilst under-eating to the point of physical complications is considered a serious mental illness, over-eating to the point of immobility or even death is considered uncomplicated greediness and a bit of a joke.

I need to write about mental illness in another post, but one of the major issues with the low status of people with mental illness among disabled people is the idea that mental illness is at least partly self-inflicted and therefore those impairments don't count. The status of people with Bipolar Disorder has shot up in recent years, partly due to having an adorable sane-seeming wit for a poster-child, but partly due the increasing public understanding that bipolar appears to have a genetic origin. If it's straightforward genes, then that's not your fault. Some people with depression, anxiety and stress are also massively disadvantaged by genes, but that's less easy to determine. The fact that most other factors contributing to mental health are entirely out of a person's control – brain-architecture, hormonal balances and events, and most of all very bad things that happened to you - is utterly lost. And then there's the fact that someone with chronic depression has failed to pull themselves together after they became ill.

Because even if you are slim and have a bad luck impairment, you will never escape this issue of responsibility. If they're not running marathons up mountains with dolphins, real disabled people featured on television are usually in the process of trying to get better, trying some new pioneering treatment or technology, full of hope for a non-disabled future. They are an inspiration to non-disabled people. A fairly recent flipside to this is that disabled people who are seeking death by euthanasia are almost seen in the same light – they are, after all, aiming for a place where they're not disabled any more. They too are considered brave (including the bravest man Terry Pratchett ever met). In an article about the suicide of John Hinkleman, a friend of the artist summed this up nicely;
“The bravery for him to get up and go through that door was staggering. [...] He beat MS. It takes away the control of your life but this gave him control.”
(The comments thread (together with those on all articles everywhere about these cases) mostly concurs, but funnily enough there is a debate about whether people who jump off Beachy Head are also brave, which of course they aren't because they are mentally ill. And not being real disabled people, people with chronic mental illness are denied the possibility of a noble exit.)

Christopher Reeve was a truly excellent cripple because, as well as being an injured superhero, he first felt suicidal but then declared that he would walk again, despite that being not merely against the odds, but absolutely impossible at that time or at any time in the forseeable future**.

As a person with chronic illness, I fall down the hierarchy simply for getting on and enjoying life, and neither wishing to kill myself nor spending every ounce of energy on pursuing a cure which may or may not exist. I have been called a pessimist for not being engaged in expensive, entirely unproven and in some cases, effectively disproven alternative treatments. An acceptable disabled person never stops trying not to be disabled. This is perhaps especially the case with chronic illness, because cultural ideas around the Sick Role.

Even if not engaged in some kind of a therapy, an acceptable disabled person must be seen to be doing the right thing all the time. If I am seen to over-do things, fail to eat properly, take my meds, manage my sleep, or if I am seen not to be doing as much as I could be, perhaps taking too much care of myself, then I become a less acceptable disabled person. And naturally, anybody who feels that they have the right to judge, is likely to find fault in how I behave. If only I lived my life exactly as someone else imagines they would live my life, then my health might be a lot better. Hmm.

Disabled people's lives belong to them. And until we've established a nightmare dystopia where everything everyone does, consumes, inhales or fumbles about in the dark with is tightly controlled for their own benefit, disabled people have the same rights and no more, both to healthy-living and self-destruction as everyone else.

* To make this situation even more horrible, it turned out that this person had contracted HIV following a sexual assault. Even in the West, there are plenty of people with HIV who didn't knowingly take any risks at all. But even those who did do not deserve to have a terminal illness, let alone the treatment that goes with it.

** It's worth saying that I believe Reeve himself was more sensible – and thus less inspirational – than it was often reported. For a while he was unpopular with disabled activists because of the emphasis he seemed to place on finding a cure for spinal cord injury. From everything I've read, I think that this has more to do with spin than the man himself.


spacedlaw said...

ANd disabled people have the right to be just as irresponsible or wicked (Or temperamental. Or patient. etc.) as the rest of humanity.

But you are right, there semms to be a little "Nemo auditur propriam turpitudinem allegans" atttitude towards people who have become disabled because of mistake they supposedly made.

Hazel said...

another brilliant post! So true. Thanks and keep blogging!

DavidG said...

One of the best pieces I've read in a long time, and so unfortunately true!

Elizabeth McClung said...

I have found this to be spot on. Thank you for writing this.

In a recent medical write up at a spcialist he stated, "Well, since you are a chair user, you do not exercise and are obese."

I told him that was an assumption. He thought and realized it was. We talked about what I do and found out I wasn't obese but had a collapsed diaphram. BUT, I hope he doesn't simply make that assumption again with every other wheelchair user.

Sure, we are supposed to want to ride a pogo stick across our respective country for our charity - but since I had no desire to do that before, I guess I was defective far before disability. I told a worker/friend I missed the 'Kidney walk', then added, "I think it must be about kidney diseases" (as the walk was listed 'The Kidney Walk' at NOON, in the summer. But then speculated about 5K's for colonics or the Spleen 10K. Not that I am against fundraisers but it seems that often the people participating have no idea what the exact fundraiser is for or the aspects of the disease in question. Ignorance is Bliss for Able bodied land I guess.

Meanwhile, don't forget the age factor - a child doing a strange, stupid and dangerous thing for disabilities or someone quite old (like running 100 marathons in 100 days at age 80) is lauded as well. Not a new phenomenon as in Cardiff there is a grave for an 11 year old who tried to Ballon across the Bristol Channel in 1903 or 1904 and drowned. It was not her first feat, just her last and enough that a chip in ensured her a spectacular grave.

TheDeviantE said...

This reminds me very much of what happened when my grandmother was dying of cancer. I had family "friends" try and tell me that she'd brought it on herself by not eating according to some special diet. It was infuriating. said...

Because my disabilityIs invisible, I often face outright hostility when I am seen using a cane or a wheelchair. People get so angry if I stand up in my chair to reach something high up. I use the chair because pain and fatigue , make it hard to walk unaided, and because I prefer to go out and do things, rather than arrange myself attractively on the couch for the rest of my life, like a good cripple. I feel that a lot of the hostility comes from this blame game, that somehow in using a wheelchair or a cane, I have made myself more disabled (rather than more able, and more mobile). If I just left the cane or the chair at home, they suppose I would get on like the rest of us, rather than going home early, or sprawling in the mud when a really powerful wave of pain sweeps me off my feet.

Elizabeth McClung said... - it is such a double standard. The wheelchair is a mobility device, and the people who judge have likely driven, rode a bike, taken a bus there - also a mobility device. But then individuals seem to think they have the right to make people feel judged, or bad. If only that number actually cared about you as a person, or me. But then, as goldfish states, we wear the trappings of our failures (like wheelchairs, or not doing this diet or that colonic).

Anonymous said...

Reeve was a good man. He was got at literally while still in hospital after the accident, by the siren voices that said it was his duty to become a figurehead for disability charities. It chimed in with his need to feel that he still had an essential role to play in life; we all, except sociopaths, need to feel needed.

Thus he became trapped in this role. I saw a film of him towards the end of his life, and was shocked at how much he had aged, and I think that was partly at least due to his submitting his body to ever more untested treatments, and his mind to ever more stress.

Anonymous said...

... whilst under-eating to the point of physical complications is considered a serious mental illness, over-eating to the point of immobility or even death is considered uncomplicated greediness and a bit of a joke...

Though in my experience, under-eating to the point of physical complications is also often considered a joke if the person engaging in such calorie restriction remains overweight.

Anonymous said...

Thanks for blogging, this is truly brilliant!

Unknown said...

Your descriptions are so vivid Hierarchy Structure