"Delayed"
"Cognitively impaired"
Special / Retarded / Feeble minded / Moron / Simpleton / Imbecile / Cretin
Idiot / Challenged
Pick your category.
These are only some of the labels, past and present, describing people – human beings – who have or are perceived to have, learning abilities and skills that are considered, by various arbitrary measuring sticks, sub-par.
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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Disclaimer: Not every person so labeled faces all the discrimination, isolation, and segregation I describe below. I know there are many good people working hard in special education to change some of what I describe. And there are individuals who thrive despite the bigotry and obstancles. But many suffer profoundly - I would say "most" do - and once the individual ages out of the school system, the real misery can just be starting....
IQ tests – a tool which was eventually eschewed even by its inventor, Alfred Binet– remain the most common way that human beings are divided into categories of sub-normality. You might be “profoundly” impaired, “severely” impaired, or merely “mildly” impaired. Or, you might not be "impaired" at all, but rather have a combination of learning and communication challenges that make you suck at IQ tests and underperform on other measurement criteria.
Impaired: definition - diminished, damaged, weakened
(An aside: In his book
"The Magic Feather", Bill Granger speculated: what if ours was a culture that valued the ability to assemble and take apart machines instead of read, write, and do math? Would those of us who were slower at these skills be labeled with "dysmechanicia" or retarded? Would we be placed in special segregated classrooms for the likewise mechanically-challenged and eventually, into group homes staffed by superior beings who never struggled when replacing a fan belt or installing a garbage disposal?)
Once labeled, much of your life is set out for you; you will likely be segregated, educationally, socially, and in most other ways, taught “life skills” instead of academic ones, be “trained” instead of educated, and perhaps have to fight to gain control over the most basic of life choices – where and with whom you live, what you wear, what you eat, where and if you work, what medical care you get, your relationship networks. If you want to integrate into the community at large you will face enormous obstacles, from the ignorance and cruelty of individuals to a social services system that provides a financial disincentive for those organizations purporting to help you to gain independence. As the funding system currently operates, the more skills you lack and the more dependent you are, the more money they are eligible to get for providing you “services”. There must be people checking on such organizations, you assume. Adults with developmental delays are perhaps the most "at risk" group in the US when it comes to being completely ignored by the regulatory agencies. There's no money, no staff, no time. And except for very close family members, mostly, no one seems to care.
The life of such a person can be emblematic of the central tragedy we are all endure in this atomized, uncontrolled capitalistic social-darwinistic greed soaked culture, where you are a “human resource” and not a valued co-worker, and your true worth lies in how much you can either consume or produce in surplus value. It is a system that destroys and requires the individual – and if you are fortunate, in cooperation with friends and workers in solidarity – to fight in order to achieve goals and live a life of dignity. The measure of success for the organizations and institutions controlling your life is whether or not they keep you alive, at least, and hopefully don't physically or sexually abuse you or expose you to others who do. It's a pretty low bar when considering the potential of a human life.
I’ve written a lot about my friend Will, who was labeled “mildly mentally retarded”. It's just one tale, but it's the one I know, and it transformed me. He was born to a wealthy family in 1965, and likely had a prenatal stroke or some severe cord compression leading to communication and learning difficulties. The communication struggles caused him frustration, which led to behavioral problems.
His family took him to a variety of experts and eventually placed him in the Brown Schools of Texas, a chain of private, expensive, and largely unregulated schools for “children with emotional and behavioral disorders.” He learned to tie his shoes there, but also learned what “restraints” were and what it was like to be beaten up by staff for not finishing your lunch. From age 5 to 13, Will lived, 800 miles from his family, at this school. The Brown Schools no longer exist, having finally run out of money from all those out-of-court settlements after multiple "students" (patients? inmates?) died from chokeholds. It was a remarkable story, actually - the attorney who had defended them in other wrongful death cases placed his own son there - and his son was killed also. Brown Schools Kills their Attorney's son .
Returning to his family home after 8 years at Brown Schools, he was enrolled in a private school for “retarded children.” There, he told me, he spent two years with a teacher who “yelled at us all the time, saying the same thing over and over again – that we shouldn’t repeat ourselves”. Will had a brilliant sense of irony. This school was likewise considered cutting edge and private and very pricey. His only social peer contact was with children likewise labeled and segregated. And by that point, he knew he didn't want to belong to any club that would have him as a member.
The family moved to a big house in a beautiful area, with a back yard that opened on to a golf course resort in Tucson. Sometimes, Will would wander over to the country club and watch, through windows, the parties and social events of other people - an alien and a spectator in this land. He entered a public school’s “special ed” program, where he was segregated from the “Regular students” and taken on a lot of how-to-behave-in-shopping-mall field trips. His family hired staff to supervise him and from these untrained –often minority – women, Will learned much more than in any school. "They didn't see me only as a handicapped person, " he told me. They were the exception.
He was painfully aware of his segregation, that he was treated differently – worse – than his siblings and “regular” people. The major civil rights breakthrough at the high school he attended was when the special ed students were allowed to eat in the same cafeteria as the "normal" kids. Will remembered sitting down at a table - and having everyone else get up and leave it. Rejection, mocking, verbal abuse, and isolation were every day companions.
At age 21 you "graduate" (aka "age out") of the public school system.
Will came to Chicago, hoping that the more extensive public transportation system would allow him more opportunities, but placed by his father’s wishes (though Will was his own guardian) into an organization that promised to help him maximize his potential. He came with a truckload of money via a trust that would dole out funds to this organization as an incentive to treat him well, and of course the state funds provided to the organization to aid Will in obtaining skills and knowledge to enable his independence added to this goldmine. Multiply this by many thousands for this organization alone, by the way.
20 years later, this organization had done nothing to keep any of their vaunted promises. Instead of job skills, there were warehousing sheltered workshops and job coaches that provided no support; instead of independent living, there were "group" homes. Emotional abuse and neglect were what Will and his family - and the state of Illinois - purchased with the millions spent. (yes, it added up to that over 20 years). Will had to fight to get tutoring in reading, live in his own housing, control his own banking and income, find his own (non-substandard wage sheltered workshop) job, cook for himself, live his own life. Eventually, he was able to leave the organization but they fought it bitterly, though by this time Will was also fighting stage IV cancer. They were determined not to let any of their cash cows escape the pasture - or, as Will viewed it, the abattoir.
The organization remains active in Illinois, vampiric, soaking up lots of the hard-to-find and under budget attack social service dollars, neglecting, emotionally abusing, and warehousing other “clients”. Some of these "clients" come into the library I work at. They have the thousand yard stare and disheveled look of the institutionalized, despite not living in an "institution" by definition. They live in "CILAS" (community integrated living arrangements, aka "Group Homes"). They attended "Workshops", which, for at least a decade, rarely have any work (outsourcing affects everyone). When Will was forced to go to these "workshops" he told me that he'd bring notebooks and practice reading and math. Sometimes they show videos - children's videos, mostly, or play games. Sometimes they do nothing. For six, seven hours a day, every day. Most of the "clients" in the program Will was in, and many like him, have very marginal disabilities, and with proper instruction and attention, could live far richer, far more self-directed lives. But that would cost money. And require well trained (and better compensated) staff. And regulation to prevent scum sucking organizations like the one Will was with from getting the money that should go to the places that actually promote dignity, independence, and self-direction.
In our library, we have a volunteer from the local special education school helping us, ostensibly getting job training. I’ve seen a lot of these young people come and go and have always been intrigued as to what happens to them after they graduate from the public school special ed system – do they find jobs? Can they further their education? Do they get the language, speech, and other therapy they still need? Sadly, the answer to this is usually “No.” Most of them end up in the most menial of tasks, if they can find work at all, or eventually shunted into “sheltered workshops”, which are often sort of human parking garages – or worse, sweatshops. As their parents age and they can no longer live at home, they may end up in group homes, which – if they are lucky – will provide them with some autonomy (maybe they can choose their own outfits or recreational activities, maybe even their own meals) – though it’s rare, because such choices require trained staff and enough of them, and – well, that’s almost never the case. If they are not lucky, they may end up in abusive – even murderous – situations group home murder leads to new legislation . In this instance, the family worked hard to lobby the state to make sure future families know your potential group home murdered or abused one – or more – of its residents "Paul's Law" . (I know the family in this case. The sister of the murdered man is a wonderful anti-war activist who truly believed her brother was in a good place).
Will had a fierce and imperishable spirit and a determination to live life on his own terms that allowed him to fight on where most others would have given up. His educational potential was tragically underestimated; he was a gifted and sensitive and insightful human being. He was my best friend. I never before really got to know anyone labeled as he’d been labeled; quickly found out that in his case, it was an appalling misdiagnosis. I am sure there are tens of thousands - at least - like him. But in most cases, the label soon becomes more important than the human being to whom it’s attached, and allows us to objectify such people, to treat them and think of them as “the other”.
Learning and cognitive disabilities are real. Many of our fellow human beings have challenges that require they receive support in many different ways, including in day-to-day tasks. But every one of them is a valuable individual, with hopes, dreams, fears, and loves.
Don’t call them retarded. And don’t call them “Special”. Don't make assumptions. They’re people. They’re part of us. Fight segregation and institutionalization on every level, and fight exploitation. Fight for truly excellent services for all who have needs. Many people now in "Group homes" and institutions could live full and autonomous lives with a (much less costly in the long run) well trained personal assistant "Our homes, not nursing homes" . Fight the bigotry and paternalism that allows such individuals to be isolated, exploited, and hidden away. Life My Way
It is still going on. It is unacceptable. It is inhumane. We all need "support" of varying kinds. If the support an individual requires includes that for tasks that most of us can do without support, it makes them no less valuable, no less human, no less.
When asked, “what does it mean to you to be labeled ‘disabled’”, Will answered, “It means people making fun of me. Not understanding.” He fought it all his life, and even in the last 72 hours of that life, he had to fight it in the hospital. “Do you live in a supervised apartment?” some idiot hospital employee asked him. “No – do you?” Will snapped.
Please visit: JUSTICE FOR WILL
Sometimes even to live is an act of courage. (Seneca)