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.


Too Much Trouble

by Sarah Rizzuto

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

For Danieal Kelly

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.


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 


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


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


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


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


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

The Death of Al Bing

by Emily Titon

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued…)

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

by A’ishah Hils.

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

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

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

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

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

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

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

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

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

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

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

Brutality: Poem by Erin Lewy

by Erin Lewy


I swim in a sea of words
Sharp enough to kill

To justify abuse, brutality
Handcuffs, tasers, guns

To serve and protect
Applies to very few

The rest of us know
This is a killing sport

Crimes against us ignored
And more perpetuated

Shoot first and ask questions later
A battle to the death

Lives seen as less worthy
Extinguished in the name of justice

Our deaths dismissed,
“Understandable, considering.”

People excusing themselves
Calling murder mercy

And brutality justifiable
In the face of fear and hate

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

To erase that we were even here
Lest anyone face

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

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

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

by Alejandra Ospina

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

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

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

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

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

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

Individuals holding candles as the light fades.

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

Close-up of candle flames.

Five individuals holding candles and the sign Our Lives are Valuable

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

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

Organizers/speakers included Samuel Barwick and Nadina LaSpina.

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

What About Us? : Violence Against Women with Disabilities

by Staci Forrest

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

Scroll down for detailed video description for the visually impaired.

Why we posted this

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

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

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

* * *

Video Description:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Legality of Euthanasia in The Netherlands

by Devin Lind

Editor’s note: contains detailed explanations of legal practices of euthanasia and eugenics.

In the Netherlands it is legal to euthanize children up to the age of 12. There were 22 reported cases between 1997 and 2004, and all cases concerned newborns with spina bifida and hydrocephalus.

For the Dutch public prosecutor, the termination of a child’s life (under age 12) is acceptable if four requirements were properly fulfilled:

  1. The presence of hopeless and unbearable suffering
  2. The consent of the parents to termination of life
  3. Medical consultation having taken place
  4. Careful execution of the termination

I have found no clear definition of the term “hopeless and unbearable suffering,” but to me it sounds quite subjective. Thankfully, this is not legal anywhere else. But still, it’s one country too many.

When I was born with spina bifida 35 years ago, I was one of about 75 children born with SB that year. Now, that number has dropped to 22. In part, perhaps, due to people eating more folic acid, but that does not explain such a massive drop. Turns out that around 80 of the fetuses with spina bifida are aborted after week 16.

In Sweden, we’ve had free abortions since 1975. What this means is that you can have an abortion up to the 18th week of pregnancy. Most abortions are performed during this period. After week 18, the Legal Advisory Council (LAC) of The National Board of Health and Welfare in Sweden (NBHW) has to approve of the abortion and there have to be special reasons. After week 22, no abortions are performed as the child is usually expected to survive, if born. 53 percent of all approved abortions and 46 percent of the total number of cases to the LAC in 2002 were due to the fetus having a disability/illness.

For over 35 years, I’ve heard people say: ”If I found out I was expecting a child with Down syndrome/spina bifida/a disability, I’d have an abortion.” In my teens, I used to say that “if I found out the baby we were expecting was NFN*, I’d abort it.” (* NFN = “Normal for now”, i. e., not having a disability). People, also NFN, were usually shocked, some even outraged, by my statement. To them, deciding to abort a ‘normal’ child and welcoming a child that was ‘less than’ was just too foreign a concept.

And despite it being illegal, so called ‘mercy killings’ still occur.

On March 6, 2012, Elizabeth Hodgins shot and killed her 22-year-old son George, who had autism, before killing herself. Media soon painted a picture of her as the victim – that taking care of her disabled child was so difficult that it was no wonder she let him die, and then killed herself.

As if this was not enough, those of us who do make it, or those of us who were not born with our disability, sometimes hear people without disabilities say TO OUR FACE: “If I had/got a disability, I wouldn’t want to live.”   Which is, you know, really rude. This also reflects how many people without disabilities see those of us who do have disabilities – as less than, not viable for life. Not a ‘worthy, good life’, anyway. Whatever that is. Still, this is one of the major reasons why we are aborted, ‘euthanized’ – MURDERED.

A person who has lived most of their life without a disability but then finds themself living with a disability often becomes depressed. Now, this is understandable. Life changes can be very challenging, and without the right support they can be hard to deal with. This is why getting that right support at the right time is crucial, so that you don’t have to spend a year and a half in the hospital because you can’t get the personal care attendants you need after becoming quadriplegic and end up in a death clinic in Switzerland (where assisted suicide is legal) because you don’t want to live anymore.

In Sweden, there was a case last year that ended up in the NBHW where a woman with neurofibromatosis that could not breathe without a ventilator wanted to cease her treatment, i. e. shut the ventilator off. Ceasing treatment is legal in Sweden, but since shutting a ventilator off often means the patient will suffocate and die, there was some debate and confusion whether or not this was, in fact, euthanasia.

One could claim that as an adult, it’s up to you to decide what to do with your life. But so many of us never get to make that decision for ourselves, it is made for us, ‘in our best interest’.

With the right support, people with disabilities can lead ‘normal’, good lives. We just need to be given that right support. But instead, we are seen as sufferers, burdens, ‘less thans’, whose lives seem so unbearable to the NFN majority that they’d rather see us dead.

As a result, the world has been robbed of people like George Hodgins, Tracy Latimer and countless others who never made the headlines.

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.

Live Inexpensively or Die

by Clint Berger

Early news stories about George Hodgins’ murder stated the “views” of his mother about the services that were available to help George and people like him, or the alleged lack of them. That statement was later refuted. George Hodgins had been involved in at least one organization that provided him both the help he needed and social interaction in his community. His mother took this away from him, saying that she wanted to find something better for him, but she did not see this through. She instead decided to take his life and her own.

George was affiliated with the Morgan Autism Center in San Jose, California. He was there for schooling and to learn life skills. His mother pulled him out of this program, but did not actively pursue other opportunities for him as she said she would. A representative of the Center stated that they had services available for adults as well as for children. George would have been eligible for adult services at age 22. Instead of letting him continue working with the Morgan Autism Center, Elizabeth Hodgins had something else in mind. George would have learned to be more independent, and he could have made friends and become more active in his community. The opportunity for a full life was stolen from him, and then life itself was stolen as well.

Elizabeth Hodgins used a supposed lack of services for her son as “justification” for murder. To say that this is wrong is a gross understatement. Some of us legitimately do not have services available and we are still alive. Often, the “burden” of raising a disabled child is heavily financial. This is likely one of Elizabeth’s possible motives for George’s murder. We will never find out the true cause of his murder, but it is possible that the monetary costs of caring for George were a factor in her twisted thought process. We will never get the truth, nor will we know the truth of what happened to any of the others whose names were read at the vigils. Since the vigils, more of us have been murdered, and with each of these murders, we all wonder when our voices will be heard.

Money can be tight for families of people with disabilities, but it can be used to control and abuse us; this is a concept and a lifestyle that is very familiar to me. Every day of my life, I get constant reminders of how much it costs for everything from the electric bill to my student loans. I am not on any federal or state assistance, and I am unemployed. I have a caseworker assigned to me who is supposed to be providing services similar to those available to George, but my calls are not returned. My needs are not treated as needs, and I am told I live too far from public transportation to be able to use paratransit. I essentially have nothing available to me right now; and that is why it is so upsetting that someone would lie about their child’s potential to evoke sympathy for themselves. George was working with the Morgan Center, and there are no accounts that justify his mother’s assertion that he was not receiving proper support there.

George’s case brings so many questions for anyone with disabilities. The question at the top of this list is something to the effect of, “How long will they let me live before my life is taken?”, but this is not the only question we have. The next question we all ask ourselves is “how will I be independent?”. We all struggle to be as independent as possible, but many of the government and nonprofit agencies that are established to help people with disabilities are actually geared toward helping their families instead. They are supposed to be helping us, but even they overlook us. George needed help. He needed to remove himself from the family that was supposed to be helping him. Even the director of the Morgan Center, Jennifer Sullivan, expressed sympathy for George’s family on her blog for the center. Yes, there are other family members mourning George’s untimely death and his mother’s suicide, but they likely don’t see Elizabeth as a murderer either. There comes a time when the focus needs to change. Start supporting people with disabilities directly. The families need support, I cannot deny that, but the best support for the family is education. Teach parents how to care for their children without controlling them, especially as they reach adulthood.

Many of the services and donations to these families are not directly monetary, but money is the key, everything that is needed and provided has a price tag on it. Most parents of children and adults with disabilities seem to ask, at some point, “when will my son or daughter be independent?”.The answer is that your loved one will be independent when services are properly administered, when the money meant for them is actually in their hands, and when they are treated like human beings and not like burdens on their families and society. Until we have money in our own pockets, we will not be seen as “productive members of society” and our opinions about our own lives will continue to be ignored. When the money intended to help us is controlled by our parents and caregivers, it allows and encourages them to control, abuse, and even murder us. We have dreams of independence beyond removing the “burdens”, but we also have voices that need to be heard. George’s voice can no longer be heard, but mine can and will be, as will those of my colleagues. We are more than a line in a budget, we are human. Focusing on the families is another way to talk about us without us. I urge everyone out there who wants to help people with disabilities to focus on us, to let the help trickle down to our families. Help them by seeing our potential and helping us fulfill it.

If, after reading about George here and reading my own take on this aspect of our lives, you still question the idea that the focus is not on us, you need look no further than Youtube. The videos below are rather lengthy, but they do well to help me show  that we as people with disabilities are not the priority in our own lives, even when people and organizations say they are trying to help us. These two videos depict a PowerPoint slideshow that gives statistics relating to the social, economic, and emotional impacts children with disabilities have on their families, such as the costs of care and time spent to care for these children. The parents in attendance are then given the opportunity to respond and tell personal stories. Many of these stories involve the parents explaining how they cannot go out to dinner, or take a family trip to the zoo like a “normal” family. The emphasis is on being a normal family, not on allowing the disabled children to live full happy lives, as it should be. Emphasizing the impact on the families and showing sympathy for parents and caregivers is enabling these families in their effort to control every aspect of their children’s lives, including, in cases like that of George Hodgins, when these lives are to end. Something is blatantly missing from these videos; that is the input from the children who live with the disabilities. If you wish to help us, start by listening to us.

A Look At the Proper Use of Services for an Autistic Child (Op Ed)

by Josh Rayfield 

When I was growing up in grade school I was in guided learning classes because I had a learning disability but the real nature of my learning disability was not known. I went to a private school for kindergarten and first grade. I was transferred into public school in second grade when my learning disability was diagnosed and I stayed there until I graduated high school. I started in guided learning classes at that time. In second grade I had to attend adaptive gym otherwise known as adaptive PE. This was because I had trouble in gym class with typical class activities like throwing and catching a ball, speed, and paying attention to what was going on around me. Academically, I struggled with math and with test taking. I needed help with homework every night and I very often had trouble keeping up with assignments in school and getting them done in a timely manner. Despite this, I got good grades in school and I continued on to college and I completed a Bachelor of Arts degree. I received guided learning support services in college.

During grade school, I experienced a lot of anxiety because I was constantly worried about failing in class. However, I had the love and support of my family and the services that were provided by the school system were good enough to get me through. At the time it time it was not known that I had an Autism spectrum disorder. This was for the most part the 1980’s. Even if I had been diagnosed then, the services that I would have been provided were not what they are today. I was very lucky growing up with my disability in the sense that in addition to the love and support that I got from my family, I did not need home care. Trying to get outside support for day to day living needs for me was never considered. As I grew up and became a teenager and young adult, I was able to go out in to the community without supervision, on my own.

The fact that George Hodgins did have access to services and did not receive proper help in getting the right services is a tragedy. I think that Georges mother pulling him out of the support services that were there for him is a tragedy. I think that George would have benefited from an assisted living facility where he would get the help that he needed with day to day care, and learned basic living skills. He would have received occupational therapy as well as emotional support therapy. I have had six and a half years of occupational therapy and it has helped me immensely. I think that George would have benefited from someone teaching him about the world around him and exposing him to it in a healthy positive way. Along with this, he needed someone to help him tap his potential to help him find strengths that I know that he had.

His mother had no right to do what she did. She had a mental illness. George deserved real help from people who truly cared about him and had his best interests in mind. He needed to be taken out of the environment that he was living in with her and he needed to be put in a healthier environment. I know that there were support services available to him. The tragedy is that he was denied them by his mother and that there was nobody in his life to over-rule his mother and get him out of that environment and in to one where he could be kept safe and given care by individuals who were able to help him.

[EDITOR’S NOTE: Josh’s piece is an opinion piece, and as such is his opinions not those of the blog as a whole. For more details, please see the comments]