Disability History 101 – The Rise of the Institution

by Savannah Logsdon-Breakstone

Institutionalization: a core part of what many think of when talking about our history of disability in the United States. But where did the practice come from?

The origin for institutionalization of people with disabilities isn’t a unified one. For each of the general populations or subsections of disability, there is a different origin. In this post, we will cover Mental Health Disabilities and Intellectual and Developmental Disabilities. These aren’t holistic attempts to cover institutionalization, but simply an introduction to the origins of the practice in these populations.

Institutions and Mental Health Disabilities

The origin of institutions for those with mental health disabilities is a long and complicated one. The institutionalization of some individuals with the most behavioral outbursts dates back to the 13th century, but the history of institutionalization for the reasons in the United States stems more from criminalization than treatment.

In the “colonial era”–that is, pre-revolutionary European occupied America–institutionalization wasn’t an option. Either you were left to your own devices, or you were put into jail as a criminal. The term “committed suicide” comes from this portion of our history. Suicide was not struck from all state’s list of felonies until the 1990s, and even attempted suicide was historically considered as a crime equivalent to attempted murder.

Suicide attempts weren’t the only crimes or “crimes” that a person with a mental health disability might find themselves jailed for. Certain municipalities or towns made laws requiring a license to beg, allowing a wider range of the poor–including those with disabilities–to be put in pauper’s prisons. Others might be imprisoned for petty crimes and then held for longer terms than their fellow inmates without disabilities.

When the idea of treating those with mental health disabilities came, it gave the impression of kindness–in some eyes, unearned kindness–to place individuals in “hospitals” specializing in Mental Health. 1773 marked the opening of the first such institution in the United States. Over the next 100 years, many new such hospitals opened, changing in design based on the latest theories of the time.

It is interesting to note that the transition of mental health disabilities (MHDs) from criminal to illnesses corresponds roughly with political and social unease. There is some evidence to suggest that the changes in thought about the role of the citizen in a democratic republic were at play. As the US worked to define how we would assign the roles and responsibilities of our citizens, new thought was given to those with MHDs as well.

Some even cited people with MHDs as a threat to the new social and political structures rather than the simple public nuisance of the past. That the “insane” might have access to the rights of citizenship to make decisions in our society caused some political thinkers to support the movement towards long term hospitalization. These same thinkers then provided or guided funding as those seeking “humane” and “moral” treatment were building what would eventually become a system of institutionalization.

Institutions and Intellectual and Developmental Disabilities

The use of institutionalization for those with intellectual and developmental disabilities is influenced more by economic factors than the political ones dealt with by those with MHDs. Rather than a protective stance that even jailing those with MHDs came from, it was a fairly utilitarian desire to teach those with intellectual and developmental disabilities that they might work. These ideals would later become restrictive in the name of protection of society from the “feeble-minded menace.”

In the face of a world that was changing economically, certain thinkers in the early 19th century began to advocate educating those who were seen as “feeble-minded” that they might provide for themselves. Economic pressures were making it more and more difficult for families to continue educating or caring for family members on their own. Initially, only those who showed promise for education were waccepted to the schools established for such education. Over time, these became boarding schools.

It wasn’t until the states promised funding that schools for the feeble-minded began accepting those with more extensive care needs. Indeed, the initial motivations of education and placement in employment in the community was slowly being undermined by economic interests. Not only was there more funding for custodial care over time, but economic fluctuations made it more and more difficult to place even trained individuals in the community.

By the time that eugenics and images of the feeble-minded as a threat to society emerged, the idea of custodial and institutional care was already in place. These new images created more pressure to continue the trends, and between 1880 and 1900 the intellectually disabled/developmentally disabled population institutionalized rose from a little over 4,000 to 15,000.

The origins of the practice of institutionalization has varied across types of disabilities.  Here we have given a short history of some of the justifications for these practices.  A familiarity with our history is paramount to understanding where we are today.  De-institutionalization continues today.  For more information on the current de-institutionalization movement, visit ADAPT, an organization which is engaged in civil action in Washington DC this week in the name of de-institutionalization.


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Reader Responses: #VigilForGeorge Blog Event

We asked our readers for responses to our blog posts covering the murder of George Hodgins and the larger issues of violence and murder against disabled people in general.  We recognize that although we have a substantial staff, there are other voices out there, crying to be heard.  We aim to give as many of those voices a platform to be heard as possible.  Without further ado, we present the first of our reader responses.

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Too Much Trouble

by Sarah Rizzuto

Saving Danieal was just too much trouble.
~Lynne Abraham, Philadelphia District Attorney

For Danieal Kelly
(1992-2006)

Danieal was just fourteen
when she was found dead
in her urine and feces,
all bone and bedsores
infested with maggots.

Forty-two pounds, weight
of a four-year-old, but she was not
a typical child. She used a wheelchair,
had cerebral palsy and was a waste of time.

I was two pounds when I was born
to the streets of Calcutta and parents
I’ll never know because even government records
are poor. I could’ve starved like Danieal, but my parents
knew enough to leave me for adoption, to another pair
of loving arms. I was never left guessing their motives
for leaving me. My father always told me your parents
must have really loved you. It’s not easy to give up a child.

Danieal remained with her mother, homebound,
isolated from classmates. I wonder if her mother ever told her
cerebral palsy was unbearable, as if she was suffering.

As if the four social workers on Danieal’s case
could do no better than to dump her off
like the wishbones of turkey dinners
when the wishes have been snapped off.

Why bother when co-workers report
she appeared happy and well cared for
the day before she died.
When Danieal’s five-year-old brother,
begged his mother to call an ambulance
for his obviously dying sister.
Danieal was too much trouble.
When I need air, I take the train
to New York city, without telling my parents,
and send them a postcard, knowing

they’ll still welcome me home.
My father questions me:
Did you think I’d be mad
and I say no, hoping
I’m telling the truth.

When I crave chocolate
I count on Hershey’s with almonds
or a bag of purple M&Ms my father leaves me
in case I get hungry. And when I cough so hard
my roommates think I’m dying,
I call my mother who’ll drive
half an hour to give me Nyquil.

How could Danieal’s mother sleep knowing
she was killing her daughter?
My parents scrounged and saved
so I can have the luxury of thinking
I’ve been spoiled rotten.

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Are we ''worse off''? I don't think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures  peculiarly our own. We have something the world needs.
~from Unspeakable Conversations by Harriet McBryde Johnson 

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Next up, we have a wonderful blog post from Sarah at Kitaiska Sandwich.  In her blog post, Sarah discusses “Death with Dignity” and the cultural attitudes and oppression which spur parents and caregivers to murder their disabled children.

‘”Until we can agree, as a society, to provide the support that all people need to live in dignity—to provide support for living independently, support for getting out of bed in the morning, for being included in the community—we have no business facilitating “death with dignity.”’

Mourn for the Dead, and Fight Like Hell for the Living

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Rachel Cohen-Rottenberg sent us several excellent posts on the recent spate of murders of disabled people.  Below is an excerpt from a post discussing the continual devaluation of disabled lives, and how lack of services is not an excuse for murder.

Because the problem isn’t the lack of services. The problem is the devaluation.

And how do disabled lives get devalued? There are so many ways, it would be impossible to list them all here. But let’s begin with language, because language is the way that we understand, well, everything. What is the language that people use to describe disability and disabled people?

Burdens on their families. Burdens on the taxpayers. Tragic suffering. Waste of money. Not fully human. Should never have been born. 

What do you think happens when you dehumanize people? What kind of culture do you think you are creating? What do you think the outcome will be when people are treated to a constant and unrelenting stream of words like that?

I’ll tell you what happens. A four-year-old boy is murdered, and people blame his disability.

This Is What You Get

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I will choose what enters me, what becomes  of my flesh. Without choice, no politics,  no ethics lives.....This is my body. If I give it to you I want it back. My life  is a non-negotiable demand. ~from "Right to Life" by Marge Piercy

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THe following is a comment from on our last post in this series, The Death of Al Bing.

thank you so much for this. even though I have a disability I have a lot of privilege in not needing to put my safety in the hands of staff, in fact I have worked as an aide for disabled people for a few years and now for elderly people with dementia (the population is different but a lot of staff attitudes are similar).

I am so sorry Al was allowed to die, but I’m not surprised that it happened. in my experience staff are constantly encouraged to ignore the requests and feelings of the people they serve. we aren’t encouraged to treat them like our customers/employers, but to do what we’re told to do by a supervisor. the things we’re told to do aren’t always based on the comfort or safety of the resident, but on what’s easier–yes, some people exaggerate needs or symptoms (although so do some people without disabilities), and some people genuinely are confused about what’s going on, but it seems like we are almost always encouraged to think this the case, just because it’s easier than treating something as a legitimate complaint.

this medicalizes disabled people in a way that other people are not medicalized. if Al didn’t have support needs, he could take himself to the hospital, whether or not he had a reason that was good in someone else’s eyes. because he lived in a group home, people doubted his judgment. not only is this a disrespectful attitude that takes away disabled people’s freedom, it can kill.
~ By Amanda Forest Vivian in our comments

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We’d like to close with a link to a poem by Lydia Brown.  Her poem, entitled “Not Human Anymore – Is This What “Ally” Means?”, is a powerful reminder of the way society still sees disabled lives – as pitiful, tragic, and ultimately disposable.  Lydia read her poem at the vigil at Washington DC, and our staff was lucky enough to get some of it on video.  You can watch the video (captioned) below.

The Death of Al Bing

by Emily Titon

This is a hard post for me to write, for a variety of reasons, not the least of which is that there are those who would prefer I didn’t write this at all. But it is because of that, among other reasons, that I must write it.

When George Hodgins was murdered on March 6th, my friends in the Autistic and cross disability communities had the same reaction we’ve long had to those of us killed by the very people who are supposed to care for us and love us – our parents, our caregivers. We were horrified, outraged, and frightened for ourselves and our friends.

When society places so little value on disabled lives that when an Autistic or otherwise disabled person is murdered or dies of medical neglect (for example from lack of or sub-par medical care) and it is tacitly condoned by society – that is a scary thing. We know, and know only too well, it could be any one of us next. Or any one of our brothers and sisters in the movement. Any one of us could be murdered, or allowed to die, and it would be all right with society. The media would say how tough our parents or caregivers had it, and what life we did have was made far better than it would have been otherwise – how fortunate we had been to have that! – and most people out there wouldn’t think twice about it, except maybe “Thank goodness there are people kind enough to take care of them while they live.”

It’s always nice to know people think so highly of you that others are thought “kind enough to care for you” even after you’ve died at their hands or through neglect or failure to act.

Annette Corriveau, a woman in Canada, has recently taken to both Canadian and American TV to talk about her desire to be able to legally “euthanize” her two institutionalized adult children. When she appeared on Canadian television, there was a LiveBlog feature which I and several of my disability rights advocate friends took part in. My fellow bloggers have written coverage of that event. As we talked with the panelists through our comments, it became clear to me (and I’m sure to my friends and others there as well) that the people in attendance truly, actually believed that ending the life of a disabled person – without any input or consent needed on the part of the person to be killed, no less – would be a kindness and and an act of mercy. And that realization was terrifying. These people were quite overt and explicit in their stated views – but what about people who aren’t so overt?

Most nondisabled people cannot immediately grasp this sort of visceral fear, and that is part of the problem also. Many nondisabled people, also, cannot grasp that our society tacitly condones killing us – and we, people with disabilities, are far too often made to be complicit in that as well.

Many nondisabled people – those who are and who are not parents, or parents of people with disabilities, special education teachers, and those who work in the fields of human services and disability, are outraged at the thought and say to us – and to each other – that they would never condone our murder or any other gross disrespectful treatment of us or allow it. And it’s true that they may not actively, directly wish us harm but many of the implicit societal attitudes – those cultural memes which we may not even be consciously aware we are carrying around with us – and the history of how we have been treated as people with disabilities definitely points to this being the case.

Even the fact it is proving so ridiculously difficult to write this would seem to be another example of internalized ableism, yes, but also the fact that the things that happen to us do not matter and should be tucked under the rug and glossed over, because well, “sometimes these things happen” – and it is so pervasive and conditioned into us as well grow up that we start to believe it ourselves, and speaking out begins to feel like a crime.

I’m going to tell you what happened to a friend of mine last September. Al Bing. 48 years old. Multiple disabilities, uses a wheelchair. He was a wonderful man with one of the biggest hearts of anyone I know – I think I can truly say that anyone who knew him loved him. He had had a hard life, but he never let that get him down. Always with a ready smile and a hug for everyone. I really miss him.

He receives – received – services from the same agency/service provider that I do, and due to an injury was temporarily living at the group home across the street from me when this happened. My staff person and I had visited him that afternoon and he seemed absolutely fine, his usual self. We high fived and laughed and got our hugs and asked him how his day was after returning from running errands, then came back here to my apartment.

My staff person had the overnight shift at the group home that night so she went back over as usual, and as usual I wished her a good shift, and we smiled as she left.

I was very surprised to receive the following text from her the next morning at around a quarter till eight: “Al Bing passed away last night. Sorry to be the bearer of bad news.”

My texted reply was “How – why – haws – er – WTF? :(” and my nontexted reply was to get my shoes on and go across the street to find the answer to my question.

She had already gone home (had texted right before she left), so I spoke to the other staff person who’d been there that night and the two first shift staff people who had just arrived at work. What they told me was that Al had suddenly gotten very sick, complaining first of stomach pains and then of trouble breathing, progressing to vomiting and a distended belly, continually and progressively complaining more loudly.

As is protocol, they called the manager on duty when he first felt sick, and then at every escalation of symptoms following the first call, they called again, and asked for the nurse to come check on him. The manager that night happened to be the manager of Al’s usual group home, and she said that Al had been to the hospital three times before and had been found to have had a panic attack. She told the staff to put him to bed, and that he’d be fine.

Only one staff person was assigned to duty; the other, a CNA, had stayed from second shift out of the goodness of her heart because she could tell Al “wasn’t right” and was worried, and wanted to stay and help the assigned staff person just in case.

My immediate thought was that this had to be because of the budget cuts; I couldn’t understand why they would not have sent the nurse over otherwise. Years ago I’d had a severe bellyache and they sent the nurse, who’d come over very late at night to check me out, and conferred with the ER, and took me there. So I said as much and the staff shook her head, saying that she’d actually been told she’d be written up if she called 911.

She continued and told me she and the other staff had put Al to bed, but had to move him because he was in such pain he was making it impossible for his roommate to sleep. After awhile he seemed to get to sleep, or at least he wasn’t crying out. The staff on duty went to check on him  – about two and a half hours from the time Al’s symptoms started – and found him unresponsive and not breathing. 911 was called at that point, but by then it was too late.

I was pretty dazed and stunned. I sat with a woman who lived at the group home with whom Al had begun a relationship, rubbing her back. She was crying inconsolably and I sympathized, hugging her. This was insane – Al had been fine yesterday afternoon. Various administrators came, as happens, and they thanked me for coming. I told them I wouldn’t want to be anywhere else. Other managers came and went; I just sat or walked around, asking what was going to happen. I texted another staff person who I knew was very close with Al; he dropped by to offer his condolences later that morning.

I couldn’t get the fact the nurse had not come to see Al out of my head. These were all good people – people I had known for over ten years. All, one would say, caring people, devoted to their jobs and the people they supported. Ask any of them and they will tell you they love us, we’re like family. Of course they’d want to do everything in their power to get us the medical care we need. Of course.

So what had happened? The recent budget cuts – an advocacy group had been asking for stories of people severely impacted by them healthwise. What a perfect example, I thought. Plus, the administrators had been worried about them for months – now, I thought, surely a man’s death would be enough to get the department director to think twice.

When a manager who had previously been my case manager came over, I told her what I had been told and said “Please tell them, find out – the nurse wasn’t sent cause of the budget cuts. Right?”

Even then I felt like I was reaching too quickly for a rationalization. (You do that, at such times.)

One of the senior administrators asked if she could talk to me. She was holding the SERs – Significant Event Reports – that the staff who had been there overnight had written. I nodded. As she talked to me, and asked me what I had been told, she referred to the SERs.

She basically asked me to relate the events of the morning, which I did. Her questions focused around who had told me what, and I told her that didn’t matter, what mattered to me was that the nurse had not been called for Al, and bringing it to the attention of the administrators and finding out whose decision that had been. Not to mention that at least one person had been told not to call 911 or she’d be in trouble. What kind of – I couldn’t even –

She then asked me to write my own SER. Perplexed and starting to feel even worse about things, I refused. “You have their SERs. What do you need one from me for?” She nodded and went off to talk to someone else, and then about fifteen minutes later I got a text from the executive director of the agency, asking me to come meet with her in her office. Now.

I got a sinking feeling in my stomach – that couldn’t be good. (Oh, man, I really shouldn’t have said that… why do I keep thinking I can trust the administration? I mean… but who else do you tell? This is RI after all… and isn’t it good to be transparent, open and honest?) After hemming and hawing a bit, I asked if anybody could give me a ride over to the office and was told to go right up.

She asked me to start from the beginning. I sighed, and began. She kept trying to pin me down on exactly what staff said what, and I didn’t want to get anyone in trouble and it sounded like she wanted to know who had talked to me, so I kept not saying who said what exactly.

This went on for awhile, and then I told her as plainly as I could that I wanted to know why Al had been allowed to die when he was obviously in such distress, and that it was sort of scary for me to think of others not getting the treatment they needed.

She explained the protocol to me, that he had recently been to the hospital several times and had been fine, and that he had had panic attacks that caused his throat to tighten – and she also shared with me his truly interesting life story and how he came to be under their care. He had no medical insurance, so they took him on as a client without charge. They genuinely cared for him and loved him. This I believe. And I know many, many of the staff did. No doubt they cared. Why, then, did this happen?

“The budget cuts,” I said, hopefully. That at least would explain why the nurse wasn’t sent.

“No, it’s not about the budget cuts,” the director said firmly. Why was she so sure and so quick to reject what seemed to me like a perfectly good answer?

Perhaps… perhaps because it actually wasn’t the budget cuts.

Later I asked her again about going to the Developmental Disabilities department and saying “A man is dead because of your cuts.”

She sighed her weary sigh, winced, and said, “Don’t blame it on the budget cuts. Someone will be arrested.”

Now that was, I thought at the time, a puzzling statement.

And why was the director seemingly much more concerned with the fact that staff had told me about it, thus breaching professional protocol, than with the fact that “someone made a bad judgement call,” as one of the administrators put it to me later. And why in the world was she more concerned about who had told me what, and as she termed it, “gossip”? I don’t think the direct accounts of four staff people whom I’ve known for years and trust, and they me (or they wouldn’t have talked to me) count as “gossip,” especially about something like this. This would seem to be a wonderful thing to talk about as an agency, as a community. But no one ever does, and speaking about it is always in low tones, out of earshot of anyone who might want to do something to change that.

And as I have said these staff people and directors are good people, all of them. I somehow feel the need to state that and that this is very much about Al, yes, but also very much about more than one person, more than one place, more than one state or even country. It’s about getting people to look at their own attitudes and how even good people with the best of intentions can make mistakes based on personal feelings, attitudes, mood, best guesses – judgement calls. And it’s true, sometimes people with the best of intentions make the wrong judgement call. And as I was told, sometimes people’s personal lives are in a jumble and they have stress and make errors but this was more than one person’s error, one person’s mistake.

And now the director was talking to me about how the press had wanted to crucify her over something that happened over ten years ago, a death that was not their fault and was much more of an accidental and unavoidable thing, and it was because they gave her the dignity of risk that she fell asleep while smoking a cigarette at the kitchen table. Very sad, and yes some people in town thought she should have had more care but what was important to her was her independence and she protected it fiercely. Didn’t want to live in a group home or have 24/7 staffing. I admired that. And as horrible as it is, many people die in cigarette smoking accidents each year, disabled and nondisabled alike. They gave her that dignity, the freedom to make her own choices and say what she wanted and did not want. And now they remembered that when hearing me talk about my concerns about Al.

Al plainly said he wanted more care/oversight, and to be taken to the hospital. You’d think, given the above, they might have said, oh my yes, we don’t want people to think we don’t look out for our people. I put that to her, and she sighed deeply, looking like she’d just gotten the worst migraine ever.

“Oh, Emily, please. Don’t talk about this.”

This is more than one agency, one state. It’s a systemic flaw inherent to the power structure and protocols that allow this kind of thing to happen, and allows for lack of accountability when it does. But because of the very same protocols, seemingly, no one talks about it. And without discussion, nothing is going to change.

I told her I wasn’t trying to do anything other than get to the truth and then, if nothing else happened at all, maybe at least make an “Al’s Law” that would say that anytime a person in a group home or under care says they are experiencing severe pain, and especially if they show symptoms such as Al  was, that they be taken to the hospital. And not judged or punished if they are not in fact at Death’s door.

And so that no one would die the way Al had because someone thought they knew what was going on.

Because what the director said to me was “We gave him a good life. It was just his time.”

(Because of my position and relationship to these people, and things that I’d seen and heard before, and being stunned – I didn’t know what to do. But it ate at me until one day I was talking to my dear friend Ari Ne’eman, President of the Autistic Self Advocacy Network, about something completely different. I stopped and said “Ari, sorry, I just – I have to tell you this story,” and I told him what I just wrote. He listened, and then he suggested I call the Protection & Advocacy people. I wasn’t sure exactly who they were – he put me in touch with a lawyer friend of his to discuss further – she has since become a wonderful friend to me – and she told me, and I had to chuckle because it was the Disability Law Center; “I know someone there.” After I returned from AutCom 2011 (and after further texting with Ari). I called my friend that Monday and told her about Al, and a couple of other things, and she started an investigation. Ari and Al, I feel like you’ve both been wanting this post for awhile. Sorry it took me so long, but… thanks for your encouragement along the way. Thank you also to Savannah and Erin, neither of whom have gotten enough sleep over the last few days. I love you both! And thank you to my “friends over there” who gave me the space and place to do this.

To be continued…)
 

The Image of God: A Few Thoughts on Disability & Faith

by A’ishah Hils.

Disclaimer – This is heavily skewed by my own faith background and informed by my experiences in Buddhist, Christian, and Muslim communities. It is not a theological investigation, though I’d be happy to talk theology via email or in the comments; it is more of a personal observation based in my own study and experiences.

I have always been disabled, religious, and queer. These are some of the things that have made up my identity for as long as I can remember, although I didn’t come into critical awareness of all of them together until my teens and some of the labels have changed over time. As far as I know, I was born this way, though whether or not I was born this way does not matter as much to me as the fact that I am this way.

I have always felt simultaneously at home and on the outside in faith communities. While I am just as connected to the divine in my house, there is something powerful to me about being in spiritual community, but going to a temple, church, or mosque and not knowing if I will even be able to enter the prayer area makes me feel unwanted.

I didn’t begin to think critically about how disability and faith intertwine until much later in life, though. The first time I deeply thought about the connection between disability and faith was in college as a religious studies major, when I read “Mildred, is it fun to be a cripple?”  by Robert Orsi, which is a chapter from one of his books that delves into discourses of faith and disability in Catholicism. I saw my own faith traditions in the article, but more importantly, I saw how some religious narratives about disability are common over many different faiths – and how deeply those religious narratives are ingrained in our supposedly secular society.

Some of these narratives include: disability is only or primarily a source of suffering and tribulation; it is a spiritual blessing to the disabled person to suffer in silence; improving life here isn’t that important, because being disabled means we’ll be more blessed in the next life; there should be a top-down charity relationship between disabled and non-disabled people; disability is a punishment for something we have done wrong and thus we might be impure or cursed; curing disability is a miracle. These narratives come from a history of institutionalized religious oppression of the disabled, and many of them are related to the narratives used to oppress other minorities (such as poor folks).

They also form the basis of how we understand disability in American society. They have created a culture of top-down charity, denying disabled people our agency. Most financial resources are put into researching a cure rather than improving our daily lives. The public discourse about us revolves solely around suffering; we are not seen as multi-dimensional people who experience pain, pleasure, joy, and sadness along with everyone else. And we are a source of terror; it is easier to pretend we are invisible because the reality of our experience (or what people think is our experience) is seen as worse than death by many non-disabled people. Non-disabled people often live in fear of turning out like us, or having children who might be like us, or even having to interact with us in all of our stimming, spazzing weirdness.

Nowadays, most of my work involves talking about disability, self-advocacy, and accessibility, and I often do this in faith communities, which gives me some opportunities to address these narratives. In Abrahamic faith environments, I usually begin by saying that we are all made in the image of God and God doesn’t make mistakes (we hope!). Most people I talk to agree with this basic assumption. For many of them, this assumption is why they are deeply concerned about the sanctity of life. Except – very few of them think about disability (and for that matter being queer) in the context of this very basic assumption. Being disabled and queer isn’t seen as a basic part of who we are, how we were created – it is seen as a spiritual trial we must get through so that one day (in this life or the next) we might be cured and that way we can be good able-bodied and straight religious people.

Because of that inconsistency, I know many religious people who see – in the absence of any miracle cures – euthanasia, abortion of disabled fetuses, and sometimes even murder of disabled youth and adults as a spiritual mercy. Oddly enough, those same people rarely seem to see disabled people being accepted into society, having self-determination, having access to good health care, and being treated as more than a source of pity and inspiration as a spiritual mercy.

To me, this view directly contradicts what is said in the Bible, the Qur’an, and many other religious texts about the nature of human beings. For me, as a person of faith, it all turns on this: if there is a divine source or some sort of spiritual meaning to life, and that divine source doesn’t love disabled people and think we are just as deserving of full lives as non-disabled people, then there is no reason to believe. Furthermore, if that divine source is not opposed to oppression of disabled people and other minorities, then there is no reason to believe. To paraphrase the words of Black liberation theologian James Cone, if God is not on the side of the oppressed and against oppression, then God is irrelevant to the oppressed.

Most religious institutions have a history of oppressing disabled people, but many of us – or at least I – cannot deny the fact that I am a person of faith. I cannot deny my faith, and so I must resist the entrenched ableism in religious communities. Because that ableism informs so much of the rest of our society, I believe we must all resist it.

I believe and will always believe that I was created in the image of God and God doesn’t make mistakes. But sometimes, like Jean in Harriet McBryde Johnson’s book Accidents of Nature, “I yearn for a Bible story about a cripple who isn’t cured.”

Brutality: Poem by Erin Lewy

by Erin Lewy

Brutality

I swim in a sea of words
Sharp enough to kill

To justify abuse, brutality
Handcuffs, tasers, guns

To serve and protect
Applies to very few

The rest of us know
This is a killing sport

Crimes against us ignored
And more perpetuated

Shoot first and ask questions later
A battle to the death

Lives seen as less worthy
Extinguished in the name of justice

Our deaths dismissed,
“Understandable, considering.”

People excusing themselves
Calling murder mercy

And brutality justifiable
In the face of fear and hate

So strong that the only recourse
Is death, meted out to eliminate us

To erase that we were even here
Lest anyone face

True justice for what has been done
In the name of the law.

Editor’s note: In light of the sensitive nature of our upcoming post, we will be taking an intermission in posting until Monday, April 16 and continuing our coverage then.

Photos and Video – Vigil for George: Union Square, NYC (March 30, 2012)

by Alejandra Ospina

On March 30, 2012, disability activists in cities around the country held vigils in memory of disabled people murdered by parents and caregivers.

Below are several photos of the vigil that took place at Union Square South, in Manhattan.

An individual holding a sign which reads 'If you (Heart) us why U KILL us' poses with a person using a power chair.

Two smiling warmly dressed individuals sit closely together on a step, looking at the camera.

Two individuals in power wheelchairs facing each other at a right angle.

Vigil participants holding signs and candles. Signs read: It's not Mercy, it's MURDER, Fix the Healthcare System, Stupid, and Don't Destroy Us, Instead Celebrate Our Differences

Individuals holding candles as the light fades.

Candles are held by several people sitting & standing; close-up of candle flames.

Close-up of candle flames.

Five individuals holding candles and the sign Our Lives are Valuable

You can see all the photos in a set on Flickr: #Vigil for George – Union Square, NYC (3/30/12)

This is a video of the Union Square vigil (captioned):

Organizers/speakers included Samuel Barwick and Nadina LaSpina.

With gratitude to those who have contributed captions and descriptions; feel free to comment or add more.

What About Us? : Violence Against Women with Disabilities

by Staci Forrest

Editor’s note: Trigger warnings for abuse, images of physical abuse, gender-based violence.

Scroll down for detailed video description for the visually impaired.

Why we posted this

This video was made by Women with Disabilities Victoria (Australia).

I found this video a while ago while browsing around YouTube. This is the only video I’ve seen to date that, in my opinion, provides a complete overview of violence against women with disabilities. This video is right; an overwhelming majority of women with and without disabilities experience some type of violence (physical, sexual, emotional, verbal, psychological, economic). However, as demonstrated in the video, the rate of violence against women with disabilities is significantly higher.

I was verbally abused myself. My disability was used as fuel in the situation. I was told by my abuser that the disability I was recently diagnosed with around that time was not real and that I was ‘faking it.’ I was told this over and over again for about a year. While I know that my disability does exist, there is still a little voice in the back of my head that tells me I’m wrong, that I am just ‘faking it.’ When seeking help in regards to abuse, I found there to be a great number of barriers in accessibility. If people with disabilities cannot access services how are we to prevent violence? In many ways, it seems as though programs for both men and women in abusive situations have forgotten about us. They have forgotten that we exist. They have forgotten that violence happens to us and we do not deserve such treatment.  So, I ask what about us?

* * *

Video Description:

Music starts playing, screen fades into a blue background with light white pattern. Text appears. Text reads:’ Violence Against Women with Disabilities.’

Screen caption of a news story comes up on the screen. Headline reads: ‘Disabled Women vulnerable to abuse: govt.’

Fades into second screen caption of a news story. Headline reads: ‘Intellectually disabled women allegedly raped by carer.’

Fades into third screen caption of a news story. Headline reads:’ Disabled assaults a ‘hidden shame.”

Fades into fourth screen caption of a news story. Headline reads: ‘Abuse of women rife in psychiatric wards. ‘

Fades into fifth screen caption of a news story. Headline reads:’ Blind Woman Marie Martin bashed and robbed for $50.’ Image is below headline. Image pictures a woman with severe bruises around her eyes. Her expression is serious. She is pictured with her dog.

Screen fades to black. White Text appears. Text reads: ‘Gender based violence is experienced by women with disabilities at a rate of up to two times that of women without disabilities. ‘

Music stops playing. Screen fades to black. Image of woman comes up on screen. We learn that her name is Tricia Malowney she is the Chair of Women with Disabilities Victoria. She states: ‘Violence against women with disabilities takes a number of forms. So as while as the other things that affect other women there’s also those components of violence that only apply to women with disabilities so being under medicated and over medicated, having your aides and equipment removed so that you can’t be mobile. There’s the psychological abuse of telling women they’re no good because they have a disability.’

Music starts playing again. Text appears. Text reads: ‘Perpetrators are often known to women. They may be intimate partners or family members; They may be carers, residents, drivers or other providers of assistance. ‘

Screen fades to black. A woman appears we learn that her name is Ariane Garner-Williams. She is a youth and women with disabilities advocate. She states: ‘I befriended one of my taxi drivers and then he’s like “oh, I’ll take you to the gym.” and it’s like that sounded a bit out of the ordinary for a taxi
driver to want to be taking one of his clients that happens to be a teenage female to the gym well it just sounded a bit if-y.’

Screen fades to black. Text appears. Text reads: ‘High rates of violence co-exist with low rates of reporting to the police.’

Ariane Garner-Williams appears again. She states: ‘Some women I guess are just scared of the repercussions of what could possibly happen. You might go to the police and that person gets put in jail then I’ll have no one to look after me and I’ll be in the big, wide world by myself and that’s gonna be
hard so I’m better off staying quiet and putting up with it.’

Screen fades to black. Text appears. Text reads: ‘When disclosure does occur, adequate responses are often lacking and women are often not believed. ‘

Screen fades to black. Tricia Malowney, Chair of Women with Disabilities Victoria appears. She states: ‘The unbelieveability comes into play again because well, ‘he wouldn’t abuse you because he’d be a good [guy] surely, must be a good [guy] to stay with you.’ If it’s the carer for example who is the
abuser or the perpetrator of violence against you because our society sees them are martyr’s and heroes for being good enough to take care of a woman with a disability they are often not believed. ‘

Screen fades. Text appears. Text reads: ‘Up to 87% of women with intellectual disabilities will experience sexual assault in their lifetime. ‘

Screen fades. Tricia Malowney appears again. She states: ‘We need to have complaint processes that are accessible to women with disabilities; that support them, that makes sure that they are believed when they report crime. Nobody wants to get involved in the justice system unnecessarily. If we need changed to the laws around rules of evidence, then change it!’

Screen fades. Text appears. Text reads: “Services that respond to violence against women need to be able to respond to every women- including women with disabilities.”

Screen fades: Tricia Malowney appears again. She states: “So if organizations are funded to provide services for women, that means all women not just the ones that are easy to provide services to. In the same way that we accommodate whole communities by providing access to information in languages other than English. let’s provide access to information languages that can be accessible to women with disabilities. So every police station should have a communication table which could be a laminated sheet that had ‘I’ve been robbed,’ ‘I’ve been raped,’ ‘I need help,’ ‘Use my phone and ring whoever,’ really show really short, easy stuff that’s not complicated.”

Screen fades. Text appears. Text reads: “A survey by the Victorian Women and Mental Health Network has revealed that 61% of women experienced some form of abuse in psychiatric wards, including assessment sexual assault and rape. ‘

Screen fades into screen caption of a news story. Headline reads: ‘Women in mental wards face grave risks of abuse. ‘

Screen fades into second screen caption of a news story. Headline reads: ‘Women assaulted in mental health wards. ‘

Screen fades. Ariane Garner-Williams appears again. She states: ‘I think we do have a lot of rights as women with disabilities, but they’re not as acknowledged or don’t seem as important to people.’

Screen fades. Text appears. Text reads: ‘Women with disabilities make up 20.1 per cent of women in Victoria.”

Screen fades. Ariane Garner-Williams appears again holding a sign. The sign says: ‘We are friends & sisters.’

Screen fades. Another woman appears and looks to be writing on a piece of paper. She holds up the paper. It reads: ‘We are mothers & grandmothers.’ Another woman appears and put s her arm around the woman holding the sign.

Screen fades. Tricia Malowney appears again holding a sign. The sign reads: ‘We are every woman.’

Screen images tightens on the words on the sign the screen fades.

Text appears on the screen detailing the contact information for Women with Disabilities Victoria. Credits roll.