Ableism is a valid oppression

Monday, June 11, 2012

Ableism is a valid oppression

Stepping out of my tumblr hiatus because I saw some recent statements, and it’s hard for me to just not respond.

I’m not going to link or reblog anyone because I don’t really want to get in on the conversation, nor do I want to talk to the people who said the things that prompted this response from me.

Edit to add: I am fine with reblogging. I did not want to post this as part of an existing conversation.

This is rather US-centric, because I’ve been mired in that system and it’s the one I know best:

I will say that because there are so many kinds of disabilities that often what is oppressive and limiting to people with certain kinds of disabilities won’t be to people with other kinds. Dave Hingsburger writes frequently on wheelchair accessibility issues that are very real and very much a matter of institutionalized oppression. The lack of accessibility reflects both a lack of awareness and a lack of concern for people with disabilities who need those accessibility features in order to be able to access things. Something as simple as getting through the front door can be needlessly complicated or downright impossible if there are stairs and no ramp. Just because a business that lacks accessibility does not have signs explicitly saying “no wheelchairs allowed” does not mean that there isn’t an attitude toward disability reflected in the building’s design that bars access to people with disabilities.

I referred to Dave’s blog because this kind of accessibility is among the most obviously available (or most obviously lacking). The use of braille on signs is another example.

But accessibility extends well beyond these things, and impacts people who have neurological disorders, developmental disorders, mental illness, chronic pain disorders, and the like that are typically considered “invisible.” I would argue that they are not truly “invisible” in a literal sense, but in the sense that people can see the signs but often do not know (and often do not seem to care to know) what those signs mean. A friend of mine was so depressed she didn’t see the point of doing much of anything at all - and this was obvious to me. Not invisible. But others might characterize her as lazy or melancholy or angst-ridden or something else mockable and easily dismissed as a real problem.

In my case, I have moderate sensory processing difficulties that makes loud noises, bright lights, fluorescent lighting, chemical smells, cigarette smoke, and crowded places difficult for me to navigate and tolerate. Encountering perfume in public places has actually caused me almost immediate sensory overload, headache, and panic attacks. I am not allergic as far as I know, but this is not a trivial problem for me - it makes it difficult to impossible for me to function in a public place where people who use cologne and perfume have congregated. It’s inaccessible to me. When I use fluorescent lighting, I have more migraines more frequently, and other issues become worse simply because of the constant exposure. Soon, incandescent light bulbs are supposed to be phased out entirely, replaced by CFLs - which also cause problems for me, due to color, intensity, and during the period (months) when it’s slowly degrading to the point of burning out, it causes migraines, dizziness, nausea, anxiety, panic attacks, and aggravates my other sensory issues. I am neither unique in this nor am I close to having the most severe reactions to these things. It will soon be against the law to purchase the light bulbs that work best for me and are most affordable. In my own space, I can switch to LED lights most likely, but I expect public places will continue to stick to fluorescent lighting.

Anyway, I know that realistically it is impossible to accommodate everyone everywhere, and I certainly wouldn’t say it should be attempted, but I do think a lot of accommodations and the situations that require them are seen as merely bad situations and not really legitimately a problem. And that minimization of problems caused by disabilities? Is a hallmark of oppression.

The actual real unemployment rate in the US is probably somewhere around 25%, counting everyone who does not work but goes uncounted for arbitrary reasons (like, gave up on looking for work for 12 months or more). But if you start looking at people with disabilities, the percentage increases, as long as you include those who are not in the labor force as well as those who are counted as “unemployed.” Overall, the rate is generally much higher in the US for people with disabilities. It’s difficult for me to find exact percentages on this, but I can find estimates on the basis of particular disabilities. This page about autism actually quotes an overall percentage that seems accurate:

Nobody knows what causes autism, or how prevalent it is. About one percent of children in the United States are diagnosed with A.S.D. Only a small percentage of adults with autism are employed full-time in either the United States or Europe. This is a problem that extends to people with many other disabilities, as well. In the United States in 2010, of 14.7 million people between the ages of 16 and 64 with a disability, only 4.2 million — less than one in three — were employed.

The link goes to a department of labor page that I can’t decipher, unfortunately. However, I would not be surprised if those numbers supported “less than one in three people with disabilities are employed.”

Now, a lot of these people are not employed because it is difficult for people with disabilities to get work. Some are not employed because their disabilities make it difficult for them to maintain a long-term work record, and keep jobs for significant periods of time. Some are not employed because their disabilities make it difficult for them to get hired at all. Many are not employed, even when they can work, because workplaces won’t accommodate them properly, which creates a very real, if invisible to most people, economic barrier, and limits economic standing for people with disabilities as a demographic. If you’re disabled in the US today, you are more likely to be poor, more likely to be on benefits, less likely to have a job at all, and if you get a job, you’re likely to have one that is actually harder than it should be due to lack of accommodations - and getting those accommodations as mandated by the Americans with Disabilities Act may require taking legal action which can and probably will cost you your job.

This is valid oppression. It is not the same as racism, or transphobia, or homophobia, or sexism, or classism, or any other. But it is valid, it is substantial, and it is institutional. Why else would the ADA itself be written in such a way that you practically have to take people to court to receive accommodations, rather than the bill itself creating legal remedies that makes it possible to get accommodations without being forced into a legal battle that itself may have negative consequences on one’s employment and future employability?

But ableism is not just economic.

In the US, if you need - not just want, but need - SSDI or SSI, you are likely to end up waiting 2-3 years or longer before you’re finally approved. This is because your initial application is likely to be denied. Even if you have paperwork from medical doctors and psychologists saying that you are basically unemployable with a list of reasons as to why you are unemployable, with medical documentation, SSA representatives pick that apart and look for reasons to deny. Often, it’s because of the function report - this is a multipage piece of paperwork in which the applicant must describe their daily functioning. The paperwork does not explain properly what people are looking for when they read it, and so many people fill it out incorrectly, which usually means that despite the fact that they may not be able to work, SSA will tell them they can. So the next step is reconsideration, which is resubmitting your application. This is denied about 90% of the time because the first denial implies that you can work, so the same application is unlikely to make a different impression. So you get to the third stage, which is appeal. Average wait time for an appeal is 1.5 years if you are physically disabled, and 2.5 years if you are mentally/psychologically/neurologically disabled. At least where I live, that’s the wait time. Your mileage may vary.

And it’s worse in the UK, at least recently. The government hired a corporation called ATOS to get disabled people off of benefits and back into the workforce. ATOS has taken this mandate very literally. People who attend their ATOS hearings in wheelchairs, with oxygen masks, with extensive medical documentation as to their impairments and difficulties, leave those hearings with evaluations that say “0% impairment”, forcing them to go through appeals and other bureaucratic procedures in order to get the benefits they never should have lost in the first place. People are killing themselves (or at least trying) because of ATOS evaluations, because they are not able to support themselves, and ATOS is basically throwing them out in the streets. This is oppression.

And some more statistics:

People with developmental disabilities are four to ten times more likely to have acts of violence committed against them. More than 90% of people with developmental disabilities will experience sexual abuse in their lifetimes. 68% of girls and 30% of boys with developmental disabilities will be sexually abused before their 18th birthday.

That sounds like oppression to me.

Parents who murder their disabled children tend to be viewed compassionately, as if they’re the real victims, and their children’s lives are not viewed as valuable at all.

Mental illness tends to result in higher high school dropout rate, lower employment rates, and in general, a lower standard of living that is often dependent upon public services (food stamps/SNAP, SSDI and SSI, Medicaid, etc).

This is partially due to the fact that people who are mentally ill tend to be less capable of taking care of themselves, less capable of managing their own affairs, less capable of holding down jobs and looking for work. And this is partially due to the fact that despite these difficulties, it is often hard to receive support in these areas that will actually help improve their standard of living. I have all kinds of support right now, but none of it is predicated on doing more than the absolute minimum. I am not even allowed to have more than $2000 in savings without risking my benefits. That is to say, my benefits mandate that I remain at the poverty level, because anything I could do to improve my economic standing is likely to deprive me of Medicaid and make me ineligible for the cash benefits I do receive. Which means I lose access to medication that is currently making me more functional than I typically am.

Eugenics was used against people with disabilities - mental as well as physical. People who are still alive today were impacted by those programs, and are still suffering because of the involuntary sterilization they were subjected to. That sounds like oppression to me.

But hey, at least lobotomies are no longer performed - but there are still living survivors whose lives were ruined by the belief that shoving an icepick through an eye socket and turning their prefrontal cortex into soup would cure their mental illness.

Warehousing of mentally ill people still happens.

Deaths like this are all too common, and abuse of developmentally disabled and mentally ill patients is endemic. Judge Rotenberg Center is perhaps unique in the degree of abuse inflicted upon its inmates, but it happens to varying degrees all over.

And then there’s public attitudes toward disability. Say, the attitude that needing accommodations and accessibility is a matter of entitlement rather than a real necessity that should be fulfilled.

Anyway, as far as my own experiences? Personally? I’ve experienced sexism, homophobia, transphobia, classism, been disbelieved as a survivor of both child abuse and partner abuse, and ableism. I cannot possibly state that ableism is the worst of those, but I will say it is extremely difficult for me to rank them. I don’t think they exist in a hierarchy where any of them are clearly more valid or potent or real than any of the others, and I am actually rather disturbed when people start comparing oppressions and ranking them in terms of severity. There is no hierarchy of oppressions. It’s not hard to criticize how people mobilize and describe oppression instead of criticizing the existence of particular oppressions.

As far as getting better goes, everyone is expected to “get better,” whether it’s possible or not. Not getting better is characterized as lazy, oppositional, and worse. It is possible for people to adopt coping mechanisms and adaptations that make them more functional, but it should also be acknowledged that mental illness frequently has a direct impact on the ability to adopt coping mechanisms and make adaptations. This is often very difficult to achieve without assistance.

I also think there’s a general lack of understanding as to just how severe and limiting mental illness can be. Just saying people should be able to improve their circumstances reflects a lack of understanding of this. Depression is a severe, life-threatening mental illness that impacts every part of your life. It can leave you completely unable to even take care of yourself (although this is rare), or more likely, leave you with little energy to do much beyond the bare minimum necessary to survive day to day. Depression can kill, although it does not cause the highest suicide rate (I believe that goes to Borderline Personality Disorder, and I think schizophrenia also has a higher successful suicide rate). Mental illness frequently - metaphorically - punches you right in your willpower, and your ability to use that willpower.

I am not arguing that no one should want to get better, or that no one should try. I am diagnosed with major depressive disorder, and I have managed - with a lot of help - to get it into remission. Unfortunately, what keeps it in remission is actually fairly fragile and can easily fall apart under the wrong circumstances. A combination of improved circumstances (my aforementioned access to services and medical care), a better understanding and awareness of my difficulties, and medication makes this possible.

But what is working for me right now doesn’t work for everyone. Some people spend years cycling through medications without getting anywhere. Some people spend years being diagnosed with the wrong things which leads to ineffective treatment that can make things worse.

And often, people who live with mental illnesses are burning more energy on a daily basis to function at a typical level at school or work. When they hit a point where they flame out, crash and burn, or just drop out, that’s usually because of decompensation - that is, they don’t have the energy or ability to maintain their coping mechanisms, and are probably in significantly worse shape than they were before hitting that point. And I am speaking from experience, as I have decompensated several times in both work and college before I ever understood what was happening to me.

Also, I’ve found that many people who get subjected to the “You need to try harder to get better” type of speech are often people who are trying their damnedest - perhaps trying harder than most people ever have to conceive of trying, let alone ever needed to try - to get better, and finding it extremely difficult. One size does not fit all, and we’re all not the same. Sometimes it’s necessary to find an equilibrium point where we can function, even if it is at a level that many people might judge as “not trying hard enough.”