Amplification: Ferguson Protesters’ Open Letter. #BlackLivesMatter

The Results Are In

An Open Letter from Protestors On The Grand Jury Decision (11.24.14)

In Ferguson, a wound bleeds.

For 108 days, we have been in a state of prolonged and protracted grief.  In that time, we have found community with one another, bonding together as family around the simple notion that our love for our community compels us to fight for our community.  We have had no choice but to cling together in hope, faith, love, and indomitable determination to capture that ever-escaping reality of justice.

After 108 days, that bleeding wound has been reopened, salt poured in, insult added to the deepest of injury.  On August 9th, we found ourselves pushed into unknown territory, learning day by day, minute by minute, to lead and support a movement bigger than ourselves, the most important of our lifetime.  We were indeed unprepared to begin with, and even in our maturation through these 108 days, we find ourselves reinjured, continually heartbroken, and robbed of even the remote possibility of judicial resolution.  A life has been violently taken before it could barely begin.  In this moment, we know, beyond any doubt, that no one will be held accountable within the confines of a system to which we were taught to pledge allegiance.  The very hands with which we pledged that allegiance were not enough to save Mike in surrender.

Once again, in our community, in our country, that pledge has returned to us void.

For 108 days, we have continuously been admonished that we should “let the system work,” and wait to see what the results are.

The results are in.

And we still don’t have justice.

This fight for the dignity of our people, for the importance of our lives, for the protection of our children, is one that did not begin Michael’s murder and will not end with this announcement.  The ‘system’ you have told us to rely on has kept us on the margins of society.  This system has housed us in her worst homes, educated our children in her worst schools, locked up our men at disproportionate rates and shamed our women for receiving the support they need to be our mothers. This system you have admonished us to believe in has consistently, unfailingly, and unabashedly let us down and kicked us out, time and time again.

This same system in which you’ve told us to trust–this same system meant to serve and protect citizens– has once again killed two more of our unarmed brothers:  Walking up a staircase and shot down in cold blood, we fight for Akai Gurley; Playing with a toy after police had been warned that he held a bb gun and not a real gun at only twelve years old, we fight for Tamir Rice.

So you will likely ask yourself, now that the announcement has been made, why we will still take to the streets?  Why we will still raise our voices to protect our community? Why will still cry tears of heartbreak and sing songs of determination?

We will continue to struggle because without struggle, there is no progress.

We will continue to disrupt life, because without disruption we fear for our lives.

We will continue because Assata reminds us daily that “it is our duty to fight for freedom.  It is our duty to win.  We must love and support one another.  We have nothing to lose but our chains.”

Those chains have bound us-all of us- up for too long.  And do not be mistaken- if one of us is bound, we all are.  We are, altogether, bound up in a system that continues to treat some men better than others.  A system that preserves some and disregards others.  A system that protects the rights of some and does not guard the rights of all.

And until this system is dismantled, until the status quo that deems us less valuable than others is no longer acceptable or profitable, we will struggle.  We will fight.  We will protest.

Grief, even in its most righteous state, cannot last forever.  No community can sustain itself this way.

So we still continue to stand for progress, and stand alongside anyone who will make a personal investment in ending our grief and will take a personal stake in achieving justice.

We march on with purpose. The work continues.  This is not a moment but a movement. The movement lives.

This letter was written and signed by numerous protestors and supporters, too many to list. Permission is granted in advance for reproduction by all outlets.

For questions regarding this Open Letter, please contact @deray.

Hiatus

It is with deep regret that we inform our readers that DisabilityRightNow will be taking an indefinite hiatus.  Upheaval in our staff as well as critical spoon emergencies recently have convinced us that we need to take some time off to recover, reformulate, and think about the direction we want this blog to go.

This by no means means DisabilityRightNow is dead, in fact, quite the opposite.  We are taking this hiatus to make DisabilityRightNow the best it can possibly be, while not endangering the health and well-being of our staff members.  Feel free to keep reading and directing people to our blog.  (Big thank you to Not Dead Yet for plugging our blog!)

Also, don’t forget to like our Facebook page for all the latest updates!  In the meantime, check out our staff members’ personal blogs, linked to on the sidebar!  Thank you all for being so understanding and staying with us during this time.  We truly appreciate each and every one of you.

A Primer on Fatphobia, Body Image, and Disability

by Staci Forrest

Back in April, I had a little bit of a health crisis. I had off and on stomach pain for most of the semester which, coupled with pain from my chronic illness, landed me a spot in the local community hospital’s ER several times. My stomach pain came to a head in the middle of the month and, again, I headed to the ER. I was expecting the hospital to do a pain management regime and send me home. Instead, I ended up staying in the hospital for four days preparing for and recuperating from emergency gall bladder surgery and an infection. After I was discharged and arrived home from the hospital, I read my discharge instructions. The instructions listed all the usual things that hospital discharge instructions usually list, including diagnosis.  Under the heading ‘Secondary Diagnosis’ appeared the phrase ‘Morbid Obesity- BMI 55.2.’ To most people, I don’t even appear to be ‘morbidly obese.’

No, I don’t eat too much. No, my parents weren’t pushovers who allowed their child to eat so much that she gained a large amount of weight. No, I don’t go to McDonald’s every day-in fact, I don’t even like McDonald’s. I AM however from a family featuring big women and I have Polycystic Ovary Syndrome coupled with Insulin Resistance. I have been told by my primary care physician that both of these factors play a role in my weight.

Under the Americans with Disabilities Act (ADA), being obese in of itself does not constitute a disability. However, with the passage of the Americans with Disabilities Amendments Act in 2008, being obese due to some type of medical impairment does. Therefore, because I can prove that my weight is directly affected by my chronic illness, I am covered under the ADA.  However, a person who cannot prove that their weight is affected by an underlying condition is not covered.

In Disability Studies literature, two disability models, medical and social, are established.  The medical model of disability focuses on impairments of the individual while the social model of disability looks at what makes a person “disabled” in society. In her academic journal article titled “Disparate but Disabled: Fat Embodiment and Disability Studies,” April Herdon argues that, in fact, people who are perceived as being fat are also perceived as being disabled. Herdon states, “the reliance upon biological truths about bodies….serves only to further pathologize individuals.”

I have seen the correlation of fatness being perceived as disability in my own life.
A few days ago while riding the local fixed-route bus with my Mom; I came face-to-face with a rather uncomfortable situation. My Mom and I boarded the fixed-route bus that would take us back home at about 5:00 in the afternoon. As one would expect, the bus was extremely crowded and only one seat was available. The seat itself was a bench seat that had the capacity to hold three people. When I went to sit down in between the two women sitting on the bench, the woman sitting to the right of me started immediate protest. “Oww, Ooo. You sat on me,” she said. “I’m sorry,” I replied and moved over the tiny bit that I could. “It is so sickening to look at, you ugly girl. What’s wrong with you? Why haven’t you gotten lap band or gastric bypass surgery yet?” the woman replied. Now, I do realize that people often think that they are being helpful when giving advice to us fat people to go to the gym three hours a day, or go to a nutritionist, or even to get lap band or gastric bypass surgery, however, I have found that, in most cases, making these suggestions are not helpful. Instead they are hurtful, especially when those recommendations are from strangers who do not know me or my medical history. In fact, these types of suggestions are triggering for me. It is good to know that people do genuinely care about me, but in this instance I would prefer sometimes if people would back off. In my opinion, the woman on the bus wasn’t trying to be helpful at all. In the end, I ended up deciding that I would just stand up while traveling.

The example of “the woman on the bus” clearly demonstrates to me that some people do view fatness as a sickness, as a disability that needs to be fixed, altered, and made extinct. Perhaps there is a place for people who are fat to be covered in the ADA when one takes into account the “perceived as having a disability” component of the ADA.

After reading the April Herndon paper, I was so excited and enthralled by the revolutionary
research it presents that I decided to share it with a friend of mine who is a major activist within the fat acceptance community.  Fat acceptance is essentially the movement against sizeism, the discrimination against people based on their size, to include height and weight.  Initially,my friend seemed quite interested in reading the article. A few days after I had given the article to her, she gave it back to me with the review, “I find it disgusting that she would compare us to people with disabilities. We ARE NOT like that. I do not like that she wants to label us like that.” My friend was completely fixated on the label of ‘disabled’.

The last thing anyone wants to be labeled as is disabled. In the eyes of many, to be disabled is to be less-than human, to be anything but human. In reality, we are all humans no matter who we are and what oppressed group we may or may not belong to.

Although us disabled people are seen in larger society as being “less-than human” and “broken,” beauty standards still exist for us as they do for people without disabilities. On June 4, 2012 at 10pm, a new show called Push Girls will appear on the Sundance Channel. The show chronicles the lives of four women, Tiphany, Auti, Angela, and Mia. All of the women featured have become wheelchair users due to injuries sustained in car accidents or other sudden onset disorders. In the ads preceding the premiere of Push Girls, I tend to notice two things. The first, obviously, is that all of the women use those sleek-sporty wheelchairs and generally, look sexy.  Second, all of the women adhere to the universal standards of beauty that threaten all women, disabled or not. They are thin (not fat!), have pounds of make-up applied to their faces, have their hair perfectly styled and they are wearing the latest and greatest clothing brands. To me, the Push Girls represent a bittersweet reality. The sweet: it’s great that we are finally seeing smart, strong women with disabilities represented in media. The bitter: people who are paralyzed due to automobile accidents or sudden-onset diseases only represent a portion of the whole disability population. We are establishing what the whole disability population should looklike based on a fraction of the entire disability community. In reality, the disability community represents a much broader physical make-up than Push Girls represent. Furthermore, the same phenomena of basing an ideal body image that only a sliver of the population can obtain is happening in general society today. The big idea surrounding this is that we are in the midst of a double standard: on one hand, we as people with disabilities are seen as less-than-human, on the other, even though we are seen as less-than-human we must adhere to impossible beauty standards.

While we have covered disabled females, what about disabled males? The prospect for body image as it relates to males isn’t pretty either. Disabled males are often portrayed as deformed or disfigured (e.g. Frankenstein), less than intelligent or, in the case of Rain Man, possessing above average or above human intelligence. These stereotypes hurt disabled males as much as the previous stereotypes pertaining to disabled females hurt. They can make men feel that they are less-than masculine and ultimately, less-than human.

This post is only meant to skim the surface of fatphobia and body image theory as it relates to disability. It is meant to ignite discussion about a population that is often not accounted for when talking about body image issues and theorem. Future research and discussion around body image issues and genderqueer individuals with disabilities as well as individuals with disabilities who also belong to other non-normative groups should be pursued. In the fall, I will be completing an independent study focusing on body image issues as it relates to females with disabilities. To learn more about the project, please email me at chronicillnessgirl at gmail dot com.

* Fat Acceptance is a relatively new movement. Fat Acceptance strives to enforce the idea that all people are beautiful no matter size and that a person should not change their size due to exterior pressures. The Fat Acceptance Movement commonly believes that health is based on a number of factors and not just weight.

Sacred Images – A Meditation on Survivors’ Guilt

by Kari Pope

So I was sitting in church one Sunday recently—how I manage to endure life as a practicing Catholic PWD is, as C.S. Lewis would have put it, “another story and will be told another time”—when I found myself unexpectedly provoked by the priest calling “all people…equal in dignity, but not equal in ability.”

It made me flinch. But not for the reasons one might suspect. Certainly I’m no more enamored than many of my decidedly anti-Catholic acquaintances of those passages of Christian scripture which would seem to render us as helpless victims, ruthless villains, or something even further down the ontological scale. But I also—and this is the important bit—harbor no particular illusions regarding my own so-called ability level, despite the fact that, medically speaking, I have a “case” of CP that is classified as “mild.” I walk independently, most of the time. I talk, speaking clearly and concisely enough to coach legions of ESL students through the most complicated tongue twisters I can dream up. I bathe myself—albeit while sitting in a shower chair—and dress myself, even occasionally in heels for dancing in nightclubs. But I wouldn’t be telling you about any of it right now had I not finally learned to master my sense of “survivors’ guilt.”

This, like many phenomena unique to and yet typical of an increasingly collective disability experience, mirrors the experiences of human beings in many communities. You yourself may recognize it from any of the following: Your friend died in the car accident you caused while driving; you flew back from Japan the day before the March 2011 earthquake; you got over the swine flu, yet your cousin in Mexico didn’t. You can’t shake the feeling that you might have done something, perhaps even given your own life, so that another could have been saved. My twin sister once confided to me that, “I used to think that if I had not been born, then you would not have had cerebral palsy.”

I didn’t see what she had meant by that until I began to come to terms with my own lifetime of internalized ableism. Throughout that lifetime, especially upon meeting other PWD, I had been plagued by thoughts such as:

“She uses a wheelchair—why not me?”

“He’s blind and deaf—why not me?”

“She can’t talk and besides that, she drools—why not me?”

Growing up under a medical and charitable model of disability, I was presented with the image of a false god: one called by Nancy Mairs  the “handicapper general,” who doles out disadvantages at will while adding or subtracting inherent value based on the “severity” of the disadvantage in question. Consequently, I fell to the idea that such dramatic—and therefore negative—differences in ability should indicate the same such differences not only in quality of life, but also in the grace to live life fully.

So I flinched that day in church, not at Father’s words, but at my guilt upon hearing them as I realized that, “Surely, if dignity is equal, then ability matters not at all!”

Now, lest you imagine that I should therefore either stop going out dancing or else start standing up to shower, let me put it to you as Martin Luther King, Jr., did:

“If a man is called to be a street sweeper, he should sweep streets even as Michelangelo painted or as Beethoven composed music or Shakespeare wrote poetry. He should sweep streets so well that all the hosts of Heaven and Earth will pause to say, ‘Here lived a great street sweeper who did his job well.’”

I love this quotation for the sheer force with which it moves folks to consider the contributions of every person, beyond reference to the biblical, medical, or charitable images that have poisoned people’s perceptions of ability and disability alike for eons. I appreciate the fierceness with which Dr. King dared to dignify a laborer among artists. Yet I find his thought problematic when I consider that he lived in a time at which a PWD’s chances of being hired as a street sweeper—let alone as a painter, musician, or writer—were slim to none. And in our own time, while our chances might be slightly improved, Lateef McLeod, Sunny Taylor, and others have boldly called into question the validity of traditional—read: ability-driven—measures of productivity and success at work.

I now call upon those hosts of Heaven and Earth for a new image: one driven as purely as possible by the dignity of people everywhere. Like many of my friends and colleagues in the disability community, I’m tired of the assumptions about, projections and classifications of disability that turn my honestly-lived experiences into a metaphor for someone else’s pain, struggle, or even triumph. At the same time, I’m not naïve enough to believe—whatever else I may cling to—that honestly living means being accurately perceived. That said I can at least hope for greater accuracy when I ask that, if you insist on making of me a metaphor, then please let it be a metaphor of my own choosing.

As a matter of fact, I seem to have found one already. Some weeks after that day in church, I happened upon this quote from French lyric poet Ponce Denis Ecouchard Lebrun:

“The butterfly is a flying flower, the flower a tethered butterfly.”

I was struck by the elegant counterpoint of two beings outside the scope of humanity, contrasting yet parallel images of beauty that invite me into a world where old comparisons fall away, where guilt does not apply, where I can “live and move and [be]”* on entirely new, entirely dignified terms.

Just now, however, I won’t elaborate on precisely what those terms might be. Rather, I will leave my fellow PWD to ponder whether they, too, have tethered butterfly moments and flying flower moments, and leave all of you to wonder whether I tend to be a flying flower on the dance floor or in the shower. The answers, if anyone ever dares wonder aloud, just might surprise us all.

*Acts 17:28, Douay-Rheims Bible

SD 101: Types of Service Dogs

by Jenna Clark

Many people recognize what a guide dog does or that a person in a wheelchair may need a service dog, but there are different types of service animals for people with various disabilities. In addition, not all service animals have public access rights under the American’s with Disabilities Act, which states that “a service animal must be individually trained to do work or perform tasks of benefit to a disabled individual.“

There are also many types of service animals for people with a large variety of disabilities. Guide dogs have specific tasks they are trained for, often solely related to a person with a sight impairment. According to the International Association of Assistance Dog Partners (IAAPD)‘s own training:

“A guide dog’s four to six month education involves mastering a set of tasks which, taken together, allow a blind or visually impaired individual to negotiate the unseen environment with greater safety and independence.”

The above link lists the variety of common tasks for hearing dogs and a wide variety of service dog tasks. Guide and hearing dogs have specific tasks for that particular disability, whereas service dogs for people with physical disabilities can be trained to help with tasks their human partner needs assistance with. An example is someone training their service dog, using commands the dog already knows, to perform tasks such as emptying the dryer or tugging open a refrigerator. The former example uses commands such as get it, bring it here, and drop while the latter uses the tug command. For tasks such as tugging doors open, a tug toy is tied to the door handle and the command tells the dog to grab the toy and walk backward.

Sometimes, people may have invisible disabilities and benefit from a dog trained to alert for seizures, help a person stay calm in a crowd by being a buffer between them, or help a person with autism. The latter is currently in debate due to an 8-year-old boy named Sean Forsythe whose certified service dog was denied access into his elementary school. Sean’s mother, Jennifer, states that Sofia, Sean’s service dog, helps Sean manage his “meltdowns”. In addition, Sofia “is able to alert…[s]he sees things before we do”. The school district is seeking more information before rendering a final determination, but they have told Sean’s parents that:

“They didn’t think the dog was necessary in order for Sean to receive an appropriate education since he was making good academic, social and behavioral progress.”

Wouldn’t limiting “meltdowns” be beneficial in a classroom setting?

The refusal to include a service dog, forcing a child to wait while a school district determines whether to grant admittance of the companion, illustrates the discrimination people who have invisible disabilities face when it comes to service dog access.

Service dogs for autism are relatively new, but they are facing a type of discrimination people with psychiatric service dogs have faced for years. Because the tasks service dogs for autism or psychiatric disabilities are so different from those for people with physical disabilities, people think these specific tasks are less important or not truly needed. Many misinterpret the ADA to say that it doesn’t grant access to public places to psychiatric service dogs. The IAAPD explains:

“While a dog’s companionship may offer emotional support, comfort or a sense of security, this in and of itself does NOT qualify as a “trained task” or “work” under the ADA, thus it does not give a disabled person the legal right to take that dog out in public as a legitimate service dog.“

‘Service animal’ is not the only kind of ‘Working animal.’ Sometimes a working animal that begins training as a service animal for a person with a disability can be career-changed. For example, a dog can instead go into law enforcement as a bomb or drug sniffing dog. A therapy dog is another example of a change in career for a working animal. Therapy dogs visit hospitals, convalescent homes, or libraries to help kids with reading difficulties by simply laying near the child and listening.

Service animals are aids that many people use on a daily basis for a variety of different reasons.  Those reasons also might not be obvious to the inexperienced eye, but that doesn’t make the need insignificant.  Whether a service dog provides balance, alerts to seizures, or helps a person navigate a crowd for a friendly face, they provide critical supports to their owners and help be a stabilizing force in the lives of people with disabilities.

Editor’s Note: Please make note that Jenna makes a distinction between a therapy animal and a psychiatric service animal. For more information on the variety of types of service or assistance animals, you can check out the Assistance Dog Blog Carnival. For more information about Autism Service animals and what they can do, we recommend Jim Sinclair’s 1990 essay, What do SSigDOGs do? Jim’s work around Autism Service Animals dates back to the 1980s and continues to this day.

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…)