institutions

You want to talk about failing the mentally ill and the mentally disabled?

Talk about how we’re holding a Day of Mourning 2015 for over seventy disabled people murdered by caregivers. 

Talk about how disability benefits only let you have $2000 in your bank account before they throw you out. 

Talk about how [graphic images] schools are violently assaulting disabled students by restraining them and locking them in seclusion rooms. 

Talk about how they locked people in institutions so horrifying even the government wanted to shut down Willowbrook. 

Talk about denying us jobs, access, right to public life, and using us as scapegoats for your vaccine scares.

But don’t you ever talk about failing us in terms of not having institutions for us. 

Many students, especially those who are poor, intuitively know what the schools do for them. They school them to confuse process and substance. Once these become blurred, a new logic is assumed: the more treatment there is, the better are the results; or, escalation leads to success. The pupil is thereby “schooled” to confuse teaching with learning, grade advancement with education, a diploma with competence, and fluency with the ability to say something new. His imagination is “schooled” to accept service in place of value. Medical treatment is mistaken for health care, social work for the improvement of community life, police protection for safety, military poise for national security, the rat race for productive work. Health, learning, dignity, independence, and creative endeavour are defined as little more than the performance of the institutions which claim to serve these ends, and their improvement is made to depend on allocating more resources to the management of hospitals, schools, and other agencies in question.
—  Ivan Illich, Deschooling Society (1973: 9)
Some signs that a place might be an institution

Lack of accomodation for disability:

  • An organization workign with disabled or elderly or sick people ought to have a clue about access and adaptability
  • If they don’t, it’s a major red flag
  • Some examples:
  • If there are a lot of people who need wheelchairs, and none of them have personally-fitted chairs, that’s a red flag. If everyone is using an institutional wheelchair, it’s probably an institution
  • If there are a lot of residents who have limited use of their hands, and no one has any adaptive equipment for doing things like changing TV channels, it’s probably an institution

People conflate patient/client opinions with family opinions

  • For instance, if they claim that everyone there wants to be, but then they only talk about what family members say about it
  • If it’s a place people can be put into by their family members without any attempt made to see if they consent
  • If all the information on a website is for family members or social workers, and none of it is directed at people who might live in or get services from a place, it’s probably an institution

If people need staff assistance or permission to contact the outside world

  • If people who can use phones independently don’t have access to phones without asking first, it’s probably an institution
  • If there are no computers available, or all the computers are in public places, it’s probably an institution
  • If you need a password for the wifi and the residents don’t have the password, it’s probably an institution
  • If nobody has a personal cell phone, landline, or computer, it’s probably an institution

Concepts of functioning levels

  • If a place claims to be a last resort for people who can’t function in a normal setting, it’s probably an institution and it’s probably doing horrible things

Bragging about mundane things as evidence of being wonderful places:

  • It’s very common for institutions to loudly proclaim that they have a pool, TVs, a barber shop, a charity shop people can work in, or other such things
  • If they think this is deeply impressive, something is wrong
  • Things that wouldn’t be particularly notable in an apartment building or neighborhood shouldn’t be particularly notable just because elderly or disabled people are involved
  • If people think they are, it’s probably an institution, and it’s probably intentionally confusing clients about what it means to be free and in the community

If people involved are required to regularly praise it

  • Everyone is disgruntled with workplaces or other aspects of their life sometimes
  • Free people express this sometimes
  • If everyone involved in an organization says it’s wonderful, and you can’t find anything people it serves are willing to complain about, something is wrong
  • This is particularly the case if the wall or website is full of testimonials about how great it is
  • And also particularly the case if people are regularly required to sing songs praising the place

If there isn’t serious regard for the privacy of people the organization serves

  • For instance, if there is a description of every single resident and their activities available on a public website, something is wrong
  • If you are brought into someone’s room without their freely given consent just so you can see what the rooms look like, it’s probably an institution

On a winter morning in 1994, Massachusetts resident Fred Boyce turned on his car radio, and was shocked by what he heard: a Federal committee had just revealed that 50 years earlier, a group of children at Fernald State School – an institution for the developmentally disabled – had been unwittingly fed radioactive cereal by MIT researchers.

“That can’t be right!” he yelled. “That’s me!”

In the late 1940s, Boyce was one of some 90 children, most of whom were classified as “feeble-minded,” who were selected by MIT to be used as test subjects. With offers of free meals and Boston Red Sox tickets, they’d been coaxed to join a “Science Club” without knowing that their inclusion would make them guinea pigs for various radiation-laden nutrition studies funded by Quaker Oats.

It wasn’t until decades later, on that winter morning in 1994, that Boyce became aware of what he’d been secretly put through. What ensued was one of history’s most searing debates about the ethics of academic research, and the necessity of informed consent.

The ‘Science Club’

In the late 1940s, two major brands – Quaker Oats, and Cream of Wheat – were competing for cereal market share. At the same time, cereals in general were under a bit of nutritional scrutiny: a series of experiments had revealed that plant-based grains contained naturally high levels of phytate, an acid that inhibited the absorption of iron and calcium when consumed.

When MIT decided to look further into how the human body absorbs essential minerals and vitamins, Quaker jumped at the opportunity to fund the study, largely out of a desire to “give them an advantage over Cream of Wheat.”

After securing additional grants from the National Institute for Health and the Atomic Energy Commission, MIT formulated their plan of action: they’d “recruit” 40 children from the Fernald State School, an institution for the developmentally disabled, and feed them cereal with radioactive tracers (which, even today, are standardly used to trace processes in the human body).

***

Originally dubbed ‘The Massachusetts School for the Feeble-Minded,’ Fernald State School was the first institution in the United States specially designed for developmentally disabled children – though it was founded on morally dubious principles.

At the turn of the 20th century, Walter E. Fernald became the school’s superintendent. Fernald, who trumpeted the school as a “model in the field of mental retardation,” was also a leading proponent of the growing eugenics movement in the U.S. The 2,500 children at Fernald were not all developmentally challenged – some were transferred from shelters, or abandoned their by their parents – but all were ingrained with the same mentality: that they were not “part of the [human] species.”

For MIT – one of the country’s premier intellectual stomping grounds – the Fernald Center was the perfect place to conduct research. Subjects were easy to coax into participating, were an ideal control group, and, most importantly, were oblivious to whatever they were being subjected to. When researchers began their Quaker Oats-funded study in 1949, they knew just where to go.

—  Article, “The MIT Science Club for Disabled Children” published Feb. 26, 2015
We only took her home from the institution once. When it was time to take her back, she sat down, refused to get in the car, screamed, and cried her eyes out. It was so hard for us to forc her to go back that we never took her home again.
—  waaaaaaay too many parents of institutionalized developmentally disabled people… I hate hearing this story, from so many people, I hate it every time I hear it, because as usual, I don’t identify with the parents, I identify with the DD person.

Tomorrow is Halloween and many thrill-seekers across the country will visit haunted houses, hoping to make it through without embarrassing themselves in front of their friends and family. From Denver to Las Vegas to Flint, many haunted houses pull in large crowds by offering an “asylum” theme. Sometimes, the asylum theme is entirely fictionalized, but a few attractions even take place in abandoned institutions and hospitals, using the history of institutions to make for an even scarier attraction because “the fear is real.” Once inside, attendees can expect to be scared by doctors and nurses, and at center stage, patients with mental and physical disabilities….

The history of institutionalization is indeed horrific, but the abuses that were committed were overwhelmingly directed at residents with disabilities, not the other way around as haunted attractions suggest today. Yet these horror playgrounds of disability succeed because the history of institutions is not widely known. That so many people flock to these attractions year after year shows how much work we have ahead.

With Halloween nearly upon us, it is important to remember the history of institutions and to reject and condemn the use of these sites of historic tragedy as haunted houses. Particularly as someone who grew up around the infamous Willowbrook State School, I recognize the horror these building can invoke, but also that that same horror truly finds its roots in the abysmal and vastly unethical treatment of people with disability in those institutions, and not in some imagined danger that finds its source in the victims of these places.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage — what it is, what it means, where it comes from — you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

The word "institution"

In a disability context, “institution” means something like “an organization that keeps disabled folks separate from mainstream society and under the control of others”.

It used to be fairly common practice for families (under great pressure from doctors and state authorities) to send their disabled children to residential institutions and then have no further relationship with them. That’s fallen out of favor in the past couple of decades, but a lot of the underlying power dynamics remain in service providers in other settings.

For instance, group homes are often referred to as being “living in the community” rather than “institutions”, but they also often have identical power dynamics.

Similarly, some places will say that they are not institutions but are rather “intentional communities” or some sort of utopian village because they are farms and cottages rather than big harshly lit buildings. But again, they have the same power dynamics.

The power dynamics can be hard to spot if you don’t know how to look for them, because a lot of institutions will go out of their way to pretend they’re doing something fundamentally different.

3

The Treasures of Accra’s Growing Art Scene

In Accra there is a perception that art is only for the moneyed classes or people from abroad, but Swaniker hopes that having the cafe in Bubiashie, a community of working people, will inspire and change mindsets.

“I think what is happening in Accra right now is incredibly exciting,” says Nana Oforiatta Ayim, founder of the cultural research platform ANO.

Source | anotherafrica.net

A lot of nondisabled people don't WANT disabled people to be part of society.

They don’t always know that they don’t want us here, but they don’t.  They’re so uncomfortable with their disabled relatives that they stick them in nursing homes, group homes, mental hospitals, and other institutions, and just conveniently never visit.  They leave their friends, spouses, and  relatives (or force us into institutions and never visit, see above) as soon as it’s clear that their disability is going to be permanent.  We can be real people one day, and disappeared overnight into a world where we’re expected to stay until we die and be taken care of by people who are saintly for even consenting to be in the same room with us (but who actually tend to be abusive and neglectful because the institutions ensure that it’s difficult for them to show us any humanity they might want to show us).

And I think part of it is that we remind them that they are fragile, and we remind them that they are mortal, and that’s too much.  They pity us so badly they’d rather die than be us, and they assume it’s normal for us to want to be dead as well.  And disabled people notice that when they write stories about us, death is acceptable, and cure is acceptable, but life in between is intolerable.

Medical professionals, who in theory are supposed to be used to us, often see as as signs of their failure.  We make them as uncomfortable as we make other nondisabled people.  Sometimes more uncomfortable.  There’s a reason that they routinely rate our quality of life as considerably lower than we do.  There’s a reason that they are highly uncomfortable with long-term or permanent use of the technology that allows us to stay alive – feeding tubes, vents, catheters – even though they are the ones trained to insert and operate that technology.  They try to teach us and our families to fear that technology, even when it’s a good idea, even when we do want to live longer… and they think they’re doing us a favor.

To most nondisabled people, most of us are totally invisible.  Especially those of us living in institutions.  And they think those institutions, such as nursing homes, are just the inevitable place where we have to live.  They think that’s the only place where we can get the assistance we need, even though we die sooner there.  They even assume that it’s natural for disabled people to die of completely nonlethal disabilities, just because the mortality rate of nursing homes and other institutions is so high and that mortality rate is thought to be because of something about us, rather than something about the way that nursing homes are dangerous to us.

They think that if they do the right things, eat the right foods, exercise the right way, then they will never be us.  And by extension, they think that something about the way we ended up (or the fact that we remain disabled) is our fault.  They want to believe that these things are within their control, because they don’t want to believe that disability, illness, and death are part of life for everyone.  They can’t handle vulnerability and mortality and they project that fear and disgust onto us.  And many of them actually actively try to make sure that we disappear, either into institutions or into death.

So if anyone ever tells you that nobody hates disabled people, you can know with absolute certainty that they are wrong.

(Posted long after I wrote it.)

When we are dealing with police as an institution, we are not dealing with individuals acting on their personal judgments , but rather, with functionaries who have agreed to put their personal opinions aside and instead act as obedient agents of the state. Thus, no, “the police” as an institution are not on our side, but are protectors of government power.
—  David Graden, PhD, JD
In an instant I understood part of the error. I had held the building to blame. I had tried the walls, the paint, the bed, the chairs and found them guilty. I realized that the building could commit no crime, hold no prisoner, perpetrate no abuse nor abet no rapist. Walls are just walls. Paint, even fluff covered in your pocket too long mint green, was just paint. Maybe we made a mistake thinking that the problem was the building. Maybe the problem was the attitude that built the building. Maybe if we change the building but not the attitude we do nothing. Maybe we considered the building constructed of brick and mortar rather than fear and hostility.
—  Dave Hingsburger, at the point when he finally began to realize that institutions aren’t created by the building, and that if you move someone to a “home” in the community with the same power structures and attitudes as in a more traditional institution, then they’re… still just as institutionalized as they were in the large institution.

“LISTEN! ONE MORE DAY BEFORE THE big bad test,” Roth announced one spring day as he passed out a test that included some practice questions from the California STAR test—the final exam in US history as far as the state was concerned. Maria and her classmates had been working with their teachers for a month to prepare for the state exams. Principal Guthertz, who has been known to eat live worms in front of students as a reward for higher test scores, promised to get a famous chef to cook a free meal for the entire school if scores went up again, as they had in the past three years. “All I’m asking you to do is to take it seriously. Do it for the school,” Roth said as he passed out the test. “Let’s do a quick review together.”“Who was the first Catholic president? Give me three things about the New Deal!” Dozens of students shouted out answers. “You are going to nail this test!”