Interview with Leroy Moore

by A’ishah Hils

Image of Leroy Moore, smiling, with his arms crossed over his chest. He is wearing a black t-shirt with a skull and crossbones.

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!

Krip Hop Nation Logo - A wheelchair with a turntable in the wheel, a person breakdancing, and the words Krip Hop in black and purple

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.

Leroy Moore standing in front of a sign that spells "LeRoy Crip Stadium."

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.

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The Death of Al Bing

by Emily Titon

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued…)
 

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

by A’ishah Hils.

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

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

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

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

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

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

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

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

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

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

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

The Debate About Euthanasia

by Lateef H. McLeod

Recently there has been a resurgence of debate of whether or not euthanasia is a viable ethical option for people with disabilities. Proponents of euthanasia stress that since all Americans have the right to life and have the authority of how to end it. They argue that it is better to end their life now instead of waiting until they need palliative care. They also argue that an early death will avoid their family and loved ones from having to pay expensive medical costs to take care of them. This self-centered line of argument goes well with the American value of being self-reliant and the abhorrence of being a burden to taken care of by others. It continues to reinforce the dominant stereotype that a non-able bodied life is not worth living.

There are many reasons why this euthanasia debate is ableist in nature. The California Foundation For Independent Living Centers delve into some of the reasons on their website. They state that euthanasia statutes are aimed at eliminating the bureaucratic red tape that prevents terminal ill patients from ending their lives and will also make it easier for people with non-terminal disabilities to argue conditions where they would be justified in taking to take their lives. This type of argument should be avoided at all costs. It promotes the narrative that some disabilities are too difficult to live with and people thus impaired should have suicide as an option at their disposal. This type of argument is insulting and demeaning to people with those disabilities who decide it is better to live with their condition.

This narrative has drastic negative consequences. We just have to look at the case of George Hodgins, a young man with autism who was fatally shot by his mother, Elizabeth Hodgins, who then committed suicide. Besides the story being tragic, it provides the example of how the euthanasia narrative leads this mother to do this heinous deed.  She most likely thought that the responsibility of taking care of her son sat squarely on her shoulders and did not ask or take the offered support of family, friends, and community members. Too often disability is seen in our culture as a personal issue or something that the intermediate family has to deal with.

The devaluing of the lives people with disabilities that euthanasia debate proposes has wider consequences in society. A person with disabilities could be deemed expendable where an able-bodied person would not be. This is evident in the case of Stephon Watts, a fifteen-year-old boy with autism who the police shot to death in front of his home.  As in many other instances, the police thought they had a right to murder Stephon even though he only had a butter knife and could not begin to be a threat to the police officers present.  The police reaction to the situation illustrates the disregard for life, as they could not resolve the confrontation without murdering the boy.   No doubt if Stephon was able-bodied or even a lighter hue, more effort from the police would be given to more peacefully resolve the situation. The history of devaluing people with disabilities influenced by the euthanasia debate gave the police license to use the lethal force they deemed necessary to quell a minor domestic dispute. The lack of amount of coverage this story received from community groups or from the news media even after the national uproar over the tragedy of the similar Trayvon Martin case exemplifies people’s reluctance to validate and protest when people with disabilities are murdered unjustly by individuals or by the state.

Euthanasia is used in this culture as an argument for not identifying or accommodating for the lives and struggles of people with disabilities. Society already dismisses people with disabilities as being either the heroic person who achieved to great heights in despite of his or her challenges, the helpless person whose disability causes them to be a drain on society, or the expendable exemplified by the euthanasia debate that basically argues that people with disabilities are better off dead than alive.  We in the disability community need to change this narrative and keep illustrating that our diverse and complex lives are worth living.