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 9^th, 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

Interview with Leroy Moore

by A’ishah Hils

Disability Right Now is extremely excited to welcome Leroy Moore onto our blog for an interview.

Leroy, a Black disabled writer, poet, and activist, has done amazing work around disability and the music industry, especially Black disabled hip hop, and around police brutality against people with disabilities. Leroy is the co-founder of Sins Invalid, a performance art project celebrating disability and sexuality, and of Krip-Hop Nation, a group of disabled hip hop artists. He also writes for POOR magazine and has published many articles and poems.

You can find more links to his work at the bottom of the interview.

A’ishah: Could you talk about your background and how you came to doing work on police violence against disabled people and people of color?

Leroy: Being Black and disabled and growing up in an activist house, I was introduced to activism when I was only 8 years old. Realizing that I was the only Black disabled young man in all of my disability activism, I saw and been involved in many cases of police shootings of Black males with disabilities from mental health disabilities to people who are autistic. How can we, poor and people of color with disabilities, enjoy laws, services for the disabled community when we have to deal with police brutality? Since the early 80’s I was involved with Cop Watch chapters, October 22nd Coalition, idriss stelley foundation and Poor Magazine in SF and families in protests, hearings and wrote about this issue. Now-a-days I have been doing more cultural activism around this issue with Krip-Hop Nation and my writings.

A’ishah: What musical artists have inspired you? Are there leaders in the disability and black communities who have inspired or shaped your work? I know for many of us you are really inspiring.

Leroy: Thank you! Musical artists that inspire me are more than musicians like the late Curtis Mayfield who not only did music but also made sure that he owned his work. Rob Da Noize Temple who is the co/founder of Krip-Hop Nation for keeping it real about disabled musicians. Ray Charles who is my man! When Ray Charles was on my mother’s record player when I was 4 years old I got up and started dancing. That was big because doctors at that time told my parents that I would never walk. The power of music! I love Public Enemy, Last Poets, Gil-Scott Heron, Sugar Hill Gang, The Fat Boys and the list goes on.

Loving Krip-Hop artists but need more women disabled Hip-Hop artists. I’m a groupie of Wheelchair Sports Camp and Kounterclockwise both are in Krip-Hop Nation. Also love metal band, King Snyder whose lead singer in a wheelchair user. Loving my girlfriend’s voice, Darla Lennox. I can go on and on. In the Black disabled community we are so separated that it is hard to get to know what each of us are working on but check out:

The National Black Disability Coalition as for writers check out Gary Norris Gray, Allen Jones, and the late Adarro Minton, Jane Johnson, Alika Hickman and one of my favorite poet, Ayisha Knight and for Hip-Hop artists check out: Keith Jones aka Fezo, MF Grimm, Toni Hickman and the list goes on.

A’ishah: Would you share about your involvement with disability justice and how it has shaped your work?

Leroy: Patty Berne, Director of Sins Invalid and a good friend coined the phrase, Disability Justice with a hard intersectional theme and since then I now have a name and political frame for my work. However before framing of Disability Justice, I think my street activism with Poor Magazine, the Black community and others was about social justice not identity politics because I saw and learn from other communities that people with disabilities deal with racism, sexism, homophobia that stir ups hate crimes, police brutality, segregation in special education and it also creates pockets of isolation that have creativity in a strange way. With my cultural activism it’s about shinning light on injustice and at the same time showing the world the talent of many of us in a package that the masses can listen, read, dance to while thinking about change.

A’ishah: How did you come to write for POOR magazine?

Leroy: I always wrote poetry and articles on race and disability but back in the late 80’s and early 90’s nobody wanted to published my articles or poems. Only Amsterdam News in NY and San Francisco Bay View Newspaper (Both Black newspapers) published my articles. In the hey day of the San Francisco Bay Area spoken word/open mic scene in the early 90’s I was doing my poetry all over the Bay Area. One open mic I met Lisa “Tiny” Garcia and her mother Dee who are the founders of Poor Magazine. After they heard my poetry, they offered me to write for them. At that time the first article was about a police brutality/killing of a Black houseless woman with a mental health disability, Margaret Mitchell of LA. We named the article, Illin in LA so we called the column Illin-N-Chillin. Illin-N-Chillin was and is the only online regular column about race and disability. Now Illin-N-Chilin has been up for more than ten years and has expanded to Krip-Hop kolumn. Thanks Poor Magazine!

A’ishah: Could you share some info about the latest Krip Hop Nation CD? I saw in a recent interview that you are working on a book about Krip Hop Nation…we would love to know more about that too!

Leroy: This latest Krip-Hop/5th Battalion CD has been in my brain for over ten years. I wanted to take my street activism around police brutality against people with disabilities and spread it into the cultural activism and music of Krip-Hop Nation. There are so many Hip-Hop artists spiting about police brutality cases but not one mainstream artist did a song about people with disabilities and police brutality so I always wanted to do this CD but at the time of the 90’s Krip-Hop Nation was not around. When I started Krip-Hop Nation five years ago, I saw my chance. Collaborating with DJ Quad of 5th Battalion pushed me to really do it. At the time last year Krip-Hop Nation got involved with Neli Latson’s case of police brutality and had start a cultural campaign for the freedom of this Black autistic young man from wrongful incarceration and police brutality. All of the above led to a Hip-Hop CD with all disabled Hip-Hop artists/poets from US, UK, Germany and New Mexico. Please readers buy this CD we have boxes of them. Drop me an email at kriphopproject@yahoo.com. About the Krip-Hop book I’m teaming up with professor Terry Rowden who wrote a book about Blind musicians and wanted to write more on blind Hip-Hop artists but didn’t know about Krip-Hop Nation at the time. We met in NY and just felt that it was right to collaborate on the Krip-Hop book that I was in the beginning stages of writing. At this time the market is wide open because there is no book like Krip-Hop book will be. So far I know of only two books that is by a disabled hip-hop artist. The Krip-Hop book will have not only the politics and history of Krip-Hop Nation but interviews by Hip-Hop artists with disabilities from around the world and more.

A’ishah: How did you come to be involved with the Neli Latson case? Could you talk a bit about the case?

Leroy: I saw Lisa Alexander (Neli’s mother) video explaining the case on YouTube. I think if you listen to Kounterclockwise’s track, Neli Latson Story and look at the music video on YouTube, http://www.youtube.com/watch?v=suie9JQXsbM

A’ishah: Do you see police violence against PWD and the recent euthanasia debate as related? Could you talk a little bit about how police violence is related to the recent murders of PWD by parents and caregivers?

Leroy: Yes I think so and the problem is that our community is not loud enough with our activism and art on these issues. If we can’t get the masses respond when individuals like parents and caregivers who kill and abuse us then what can we do when the state i.e. police, teachers and other workers kill us? This is nothing new. I saw it happened in the late 70’s late 80’s and 90’s. The items that I see are common in theses cases are:

1) The mainstream attitudes against people with disabilities are still negative like people with disabilities are burdens on society, we are a sight of fear who needs to be put in control, even some parents call police for help to get their disabled child “under control.”

2) With this view leads to more negativity, hopelessness, isolation that creates most of the times drastic measures like killing of daughters and sons.

3) On the other end we, people with disabilities especially us of color living in poverty are seen as dangerous, out of control, a threat and costing a lot thus giving the green light for police and other state workers to abuse us on the streets, at schools, in group homes, in our own homes and in other public arenas. About two years ago I was profiled four times in one month because of my disability. Check out the poem below. I also saw how these abuses and killings of people with disabilities increase when the economy is down. In the UK some of Krip-Hop artists told me that politicians have gone on record saying “People with learning disabilities (Developmental Disabilities) are a drain on our society.” The sad thing that it is so ingrained that the mainstream and right leaning media, politicians and even some artists continue to incorporate hate language, imagines in what they put out. From Republican presidential candidate, Rick Santorum who said that his disabled daughter cost a lot to movies like 21 jump street in which Ice Cube makes fun of people with autism to many musicians from Hard Rock to Hip-Hop who continues to sing lyrics like “What a waste like a cripple…” This ingrained culture is hard to fight because people with disabilities don’t have the resources like Fox News’ cameras or celebrities’ foundations but more than resources we, the disabled community, are so separated and many of us don’t want to rock the boat, don’t want to get beau crates or politicians mad because we relay on what comes from their red tape like SSI, In Home Support Services etc. We think we can’t take on Fox News, Hollywood, and the entertainment industry. We fall back into identity politics and don’t work on build strong collaborations with other communities in great numbers. However it’s not only our fault it goes both ways but the question is in these times where killings of people with disabilities, hate language is everywhere, mainstream media misrepresentation of us and the fast cultural digestion of us, we have no choice but to united before they find a way to wipe us out for good.

Disabled Profiled

Verse 1
Yeah I’m a Black man
Known about racially profiled
Two Black hotel workers
Same race but in my face

Chorus
Disabled profiled
Making assumptions upon appearances
Blocking the entrance
Can’t be race because we are both Black

Verse 2
Black Disabled Man
Must be a drunk
Slur speech drugging feet
Must be begging for money

Chorus
Disabled profiled
Making assumptions upon appearances
Blocking the entrance
Can’t be race because we are both Black

Verse 3
Must protect others from this bum
Got to do my job
I summed him up from across the street
Poor cripple homeless beggar

Bridge
Confused, disabled and black
The fear builds
As he approaches
Looking at him like he’s a roach
Firing out questions upon questions
No not racially but disabled profiled
Here in the home of ED Roberts

Chorus
Disabled profiled
Making assumptions upon appearances
Blocking the entrance
Can’t be race because we are both Black

Verse 4
Mocking my walk
Didn’t read my tense body talk
Friends saw my anger,
“Mr. We’re together!”

Verse 5
Disabled Profiled
And I’m tired
Twice in one week
Its not race it happened from Black & White

Outer
Disabled Profiled
And I’m tired
Twice in one week
Its not race it happened from Black & White

Disabled Profiled
And I’m tired

Disabled Profiled
And I’m tired

I’m so tired

By Leroy Moore
Yes this is a true story!

A’ishah: Thank you! I’d love to hear about anything else you’d like to share, from your own experience or about the work you’ve done. I was also wondering if it’d be okay to share some of your videos from Krip Hop and Sins on the blog as well.

Leroy: Krip-Hop Nation is also working on a documentary about police brutality against people with disabilities with a retire NYPD officer who is also disabled and a poet and play writer, Emmitt Thrower. We hope the documentary will be done at the end of the year. Go to http://www.whereishope.webs.com to follow our progress. Krip-Hop Nation has become international with the creation of MWD Mcees With Disabilities. We have artists from all over the world and we are working on another CD with artists from all over the world. We are working on a song blending metal to Hip-Hop with Kounterclockwise and King Snyder. Professor Terry Rowden and I are writing a book about Krip-Hop Nation. So there are many things that I’m working on and of course Sins Invalid that I think you all should interview. Patty Berne, is just incredible. Go to http://www.sinsinvalid.org for more of Sins awesomeness. Last thing Krip-Hop Nation and my work are not about the bling bling it’s about education, activism, paying respect and at the same time building relationships. Please please women with disabilities come out more with your music and art because we all need to hear, read and look at your art, music and activism.

Links to Leroy’s work and videos:

MWD/Krip-Hop Nation’s Web Links
Krip-Hop Nation Police Brutality Music
Krip-Hop Nation Music

Facebook Groups
Krip-Hop Nation Worldwide
Krip-Hop Nation FB group
Musicians with Disabilities page

Binki Woi music page
http://www.reverbnation.com/binkiwoi
http://www.youtube.com/watch?v=MR_I_ETP_ZA

Leroy’s music activism page
http://activistnews.ning.com/
http://www.youtube.com/watch?v=3Jjawd7N1GI

Binki’s music page
http://soundcloud.com/binki-woi/tracks
http://www.soundclick.com/bands/page_music.cfm?bandID=1170541

Diversifying Hip Hop: Krip Hop and Homo Hop
Krip-Hop Nation in Seattle Performance
Krip-Hop Nation in Seattle Police Brutality workshop

Leroy Moore and Preachman (Poet/Rapper) speak to CUNY Students about Krip Hop Nation of Disabled Rappers and Hip Hoppers.
Filmed and Edited by Emmitt Thrower for http://www.artistmagnet.com

Krip-Hop MWD @ DADA Festival Liverpool UK 2009
Krip-Hop -Nation -M.W.D (MCees with Disabilities) are fantastic !The raw energy and talent that they have is phenomenal . Krip -Hop is a synergy of their talents . A nicer more altruistic Artistic bunch you couldn’t find anywhere. They are also truly international meeting up only twice before ,so what we were seeing was the ultimate live Artist performance, which sparkled and got everyone dancing and moving as well as touching hearts and minds with their lyrics and obvious stance . This really was a “Happening they just did it and the love and respect they have for each other and talent and joy at being at dada Fest 2010
http://www.youtube.com/watch?v=UEhSyXvfAZQ
http://youtu.be/3Jjawd7N1GI
http://youtu.be/hMxWK_HHxU8

Krip Hop Promotional Trailer Video
Promotion of Krip Hop Event at Georgia State University
Showcasing people with physical disabilities talent in Hip Hop
Footage Taken by N’Spi Media Productions
Concept & Video Editing by C.C.

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.

Rethinking How We Value “Productivity”

by Lateef McLeod

Work for me is something that I handle, but do not fully appreciate. There are many reasons why I say this. One reason is that I do not think my work is valued much in the wider social context. My written thoughts and experiences are sometimes so far away from the main stream that is often over looked. This reality makes me think of how much is my work really worth in today’s economy. Do I, and other people who use AAC to communicate, have the capability and the desire to be part of today’s workforce, which is being streamlined so employers are getting workers who are more productive but less costly? Is this the best option for us to aspire to?

The professional classes of people who use AAC are few and far between in today’s society. Besides a few notable exceptions like Dr. Bob Segelman, a sociologist, and Bob Williams, the Associate Commissioner for the Social Security Employment Program, most people with severe mobility and speech disabilities do not have the opportunity to pursue lucrative careers or even full time to part time work. My experience with the work force in light of this fact has been very fortunate in securing a blogging position at United Cerebral Palsy of the Golden Gate in Oakland, where I work part time. However, even with this steady income combined with my Master’s degree, I still only make roughly minimum wage a year. This means even with my education, the way this economy is set up, my production value is greatly decreased because of my disability.

In Sunny Taylor’s article, The Right Not to Work: Power and Disability, she points out that in today’s economy people with disabilities are worth more in the private industry in nursing home beds then out in the work force. Taylor argues that people with disabilities should have the right to determine the level of production they can contribute to society without being stigmatized for it. This philosophy directly challenges the mainstream view that a person gains status in their society from their occupation. Taylor is indirectly expressing that people with disabilities intrinsically have value in society whether they have a job or not. This revolutionary thought liberates people with disabilities from striving to validate themselves through the entrance of the regular workforce. It makes people with disabilities the masters of our own production who are able to define and determine exactly how we will contribute to our respective community.

To take control of your work productivity is a revolutionary idea for people with disabilities, and I think it is empowering for people like myself. Instead of conforming to the normative ideal of working a nine to five job until I eventually retire I am free to pursue more creative endeavors. My passion is to pursue a career as a poet and a novelist. This means that I have to frequent spoken word and other poetry events to get my name out there and to promote my recent published poetry book. As I develop as an artist I have to make sure that my other obligations do not distract me from my creative work. Time management really helps me in this endeavor and should be a focus for any person with disability who wants to be productive in reaching their goals.

I am not saying full employment is not a worthy goal for people with both a severe speech disability and mobility challenges. For those who want a traditional career, I encourage them to succeed in their goals. However, for those who would like to be creative with their productivity whether it is creative artwork or just being more engaged with their community, it is important work that should be valued at least with acknowledgment. For some people who communicate with AAC, just staying engaged with their surrounding community might be a full-time job in itself.

—

Editor’s Note: Tomorrow is Blogging Against Disablism Day (BADD), and many members of the community take the day to blog about issues like those we cover here at DRN. To learn more or to find out who is participating afterwards, follow the link.

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.

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…)