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.”

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.

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]

Cultural Violence and People with Disabilities

by Kari Pope

When I think about the George Hodgins case, the first thing that springs to mind is something I discovered in peace and conflict studies as, “cultural violence.” Why? Well, as I am someone who supposedly inhabits “the top of the disability food chain,” with few overt accessibility needs and few obvious signs of the physical disability I do have, there seem to be significant parts of a collective disability experience that I don’t share, such as the level of physical assistance with activities of daily living that would necessitate continued, regular, intimate contact with a caregiver or personal attendant. Therefore, I feel the most I can say about the story of George Hodgins is that what happened to him only serves to reinforce, to devastating effect, the culture of violence that confronts people with disabilities on a daily basis and that has wreaked havoc on my mind ever since I learned that a term for it existed.

How, you might ask, can such a thing exist? After all, as Clint Eastwood infamously put it, “Nobody doesn’t want to help the handicapped.” But can that really be true when one considers that modern structures were purpose-built to exclude us? That accessibility measures, when added on at all, were added as an afterthought, in accordance with a law that is considered by many in the disability community, even 20 years on, to be “better than nothing” and by many outside it as too costly to implement?  That too many people, their potential either ignored or disregarded by the rest of society, remain trapped in poverty by a system in which the loss of benefits is a constant threat?

But I won’t try to tackle all the issues in a single post. In fact my intention in posting was to reflect on how the culture of violence I perceive pervades my own disability experience. Whilst reflecting I happened upon an article discussing  the importance and impact of “The Black Male Code” in the aftermath of the murder of Trayvon Martin. In it, the author details, among other things, the lengths to which a Black man must go, even today, so as not to appear threatening or dangerous in public.

That got me thinking. I mean, I’m white. I’m a woman. I’m disabled. And I’m in public all the time; I take public transportation everywhere I go. It dawned on me that I’ve seen, even before I knew what I was looking at, the Black Male Code in action: guys going to unnecessary, yet painful, even sometimes ridiculous lengths to make me feel it ease. Remembered compliments, smiles, even nods took on new meaning as I started to wonder, “What code governs my own interactions with disabled and non-disabled folks alike?” Experience and history have taught me that few things are as threatening to a person’s sense of self as disability. I asked myself, “How often have I stayed seated when I could have stood, paid the full fare on the train or bus, or worn trousers or long skirts instead of shorts or mini’s, all in the name of preserving one’s perceptions–and, I admit, my own feelings–of so-called ‘normalcy’? By the same token, how often have I ‘gimped it up,’ in order to assure my fellow cripples that, yes, I am one of you?”

The answer is, all the time. And every time, I have felt like I was a threat to, and like I was threatened by, each group.

For example, I’ve noticed that folks have a tendency to think it’s perfectly okay to ask personal questions. They don’t seem to understand–probably because they feel threatened–that when you ask about a person’s disability, you are asking about their body. End of story. Inquiring point-blank about my ability to stand for long periods of time is not a way to greet me. Asking the name of my “condition” is not the way to find out my name. Translation: If you want to greet me, just say hello. If you want to learn my name, try telling me yours. We’ll both feel a whole lot less threatened, I’m sure.

Being what is sometimes called a “walkie-talkie” among people with CP, I’ve learned that I’m threatening to other people with disabilities, and their families, for almost the opposite reason. Instead of being a threat through being different, I am a threat for being not different–and therefore not disabled–enough. And I get threatened, as I was during a Cerebral Palsy Family Forum at UCLA several years ago, because of that lack of difference, that lack, ironic though it may seem, of disability. Apparently I was too much for one mother, whom I encountered along with her son at this event in 2006. After watching me approach an information booth where they, too, were waiting, she turned to me after I had greeted her son and said, “Oh, you have cerebral palsy, too–barely.” Nothing more.

I wanted to answer, “Hey, look, lady; I didn’t get to choose. Most days, if it were up to me, I’d rather roll around like your son there with his tray full of Spider-man stickers. Which, by the way, in case you hadn’t noticed, I complimented him on. I hope that at some point you’ll teach him to appreciate that, because so far all I’m getting is that you’re teaching him to hate me for being ‘less disabled’ than he is.”

But I didn’t. Because as my own mom always says, “You can’t expect people to get it. You can’t expect people to know and understand.” Such discouragement from the home front I experience also as violence. It’s the constant threat of no protection, no empathy, no opportunity to express myself or to be heard from the tenuous place I occupy in public, on the “disability food chain,” and everywhere.

And so I find myself, until now, locked into a code of silence. Alone with the threats I face every day, I see them as the seeds of a culture of violence that, if left to grow unabated, will ensure that the murder and abuse of people with disabilities, both like and unlike George Hodgins, will continue. And if we, in turn, continue stratifying our disability experiences rather than pooling them for the greater hope and wisdom of a community that strives to not only recognize but also create a shared disability experience, the infighting that keeps us at each other’s proverbial throats will destroy us from within, while hatred, abuse, and death continue to wrack us from without.

Murder, Not Mercy

by Cara Liebowitz

They’re trying to kill us.

More specifically, they’re trying to kill me.

Please spare me your platitudes about how you’re not trying to kill me, of course not!  “You’re one of the lucky ones.” you tell me.  “We only want to put the severely disabled out of their misery.”  Implicit in this argument is the assumption that I couldn’t possibly be severely disabled, because I have a voice.  I’m actively arguing against you.

But you don’t know me.  You don’t know a thing about me.  I could be a full time powerchair user, I could be fed through a g-tube, I could be using a communication device.  And the truth is, I’m none of those things.  But I could be.  And even if I was?  I’d still be happy.  And I certainly wouldn’t want to be dead.

You say you want to end the lives of those who are suffering.  Well, if that’s true, then you want to kill me.  Am I suffering?  Absolutely.  Not from my CP, but from the pain that plagues me every day.  The pain could go away tomorrow and I wouldn’t miss it.  But I’d still rather be in pain than dead.  And I’d like to make that choice myself, thank you very much.

You say you’d rather die than be like us.  Like me.  And that’s sad, because you have no idea what our lives are really like.  But that’s your choice.  Those people you killed – directly or indirectly – they didn’t have that choice.  Tracy didn’t have a choice.  George didn’t have a choice.  And that’s what you really want, isn’t it?  That’s your definition of “severely disabled” – incapable of expressing their choice the usual way, the right way, the normal way, so you pretend to be a noble hero and make that choice for them.

I can speak.  I can say “Stop!” when someone is trying to hurt me.  But after I’m dead, will you pretend I couldn’t?  Will you exploit the hardships of my life in order to perpetuate the idea that bodies like ours are broken?  Will you even acknowledge that I was happy, and yes, even proud, just the way I was?

You call it mercy.  I call it murder.

On Friday night, I stood in a dimly lit park, surrounded by my friends, my brothers, my sisters in the fight against ableism.  I held a candle up to the sky in memory of all of my disabled brethren who were cruelly snatched, against their will, from this world.  Not because of the natural path of illness or injury, not even because of a tragic accident.  No, these people were not with us because someone willfully, purposely, decided that their lives were not worth living.  Someone actively decided to kill them.  All in the name of “mercy” and a twisted sense of moral obligation.  If their lives were not cut short, who knows?  They might have been at that vigil with us, joining hands and hearts, building a sense of community among disabled people of extraordinarily diverse backgrounds.   But we have no way of knowing – because someone decided they didn’t deserve to live.

As a group, we must rise up.  As a group, we must protest, in any way, shape or form that we can.  We cannot let these murders go unnoticed.  The time has passed to be nice, and polite, and grateful for the scraps of humanity that society throws in our direction.  We must demand our personhood, and we must demand it now.  Because if we are too afraid to stand for our rights, if we turn our backs on these atrocities because we are terrified that if we speak up, they will kill us too and blame it on our pitiful suffering, this will keep happening.  It already has.

They’re trying to kill us.

They’re trying to kill me.

And I’m scared.

*All three videos are captioned. Please let us know if there’s a problem.
**You can read the poem that Lydia Brown is reading in the last video at

Poems by Meg Mertens

by Meg Mertens

Death, Despair, Murder

George, Tracy, Willowbrook, More

When will we have rights?

* * *

I was in the house

Mother told me I should die

No one objected

* * *

I tire of seeing the deaths of others

The calm talk, the debate, murder not mercy

They talk of killing our sisters and our brothers

The newspaper coverage pled understanding for his mother, a travesty

People say we don’t understand discrimination

I say, I knew what a hate crime was when I was five

We understand many things well, especially your damnation

George Hodgins never reached twenty three, why do the masses say he was a burden alive?

We should not have to live in terror of our families deciding our worth

I hope one day to read the paper and see a ‘mercy’ murder judged for what it truly is, killing

Many people are caught up in foolishness, judging people by their birth

Until that day comes I will wait, and when it does it will be gratifying

I will always be ready to discuss

About us, not without us.

* * *

Anger, hate, pain, fear

Our numbers have decreased

Our value has not

* * *

A parent hears cries of pain

What we hear is attempts at communication

We are no changeling children, what would we gain?

We did not steal those perfect babies, much to your lamentation

I see your eyes as they look past

My friend is not my handler, I am my own being

If you lived a day like mine, you would not last

I am an expert in myself, something you are not seeing

Mom, what is the matter?

Mom, why do you have that gun?

Mom, why are you crying? I didn’t mean to make you sadder.

Mom, why did you kill your son?

I’m sorry no one saw how unhappy you’ve been


* * *

George Hodgins, Dead

Does his name ring a bell? No?

I did not think so

I might not be perfect

I’m no changeling, but your child

Why did you kill me?

* * *

We at DRN decided it was best to forego posting on April 2nd in honor of Autism Acceptance Day, to avoid taking traffic away from anyone participating in that event. 

Vigil Report: Virtual Vigil and Boston

by Erin Lewy

I was fortunate enough to attend vigils for George Hodgins both virtually and in Boston.  Each left a lasting impression on me.  At the virtual vigil, we were lucky enough to have a video connection to DC.  While we weren’t able to see much, we received audio of Ari Ne’eman’s words.  The experience was powerful and left me feeling connected to a larger movement, underlining exactly why I was there and energizing me for Boston.

Ari’s words, clearly from the heart, were never written down.  At the Boston vigil, there was a lot of impassioned, off-the-cuff speaking too.  I was ultimately able to see the autistic self-advocacy movement first-hand, from M., who spoke passionately about disability from within her faith community in New England, to “Squid,” who missed the bulk of the virtual vigil but came with the intent of lighting a candle at home and reading the names of four hundred and fifty eight murder victims with disabilities.

Thankfully, video will be available from several vigils, including the vigil in DC.  When this footage is made available on YouTube, we will bring it to you, so that you can experience what several of us did on the night of Friday, March 30.  A crowd of thirty filled Farragut Park in memory of George, a number which we were all proud of.  Still more spilled out in virtual space, expressing our fear, sadness and outrage.

Through these vigils for George, I realized that we were all handling our fear and sadness to the best of our ability.  We came together, over a period of two days in eighteen cities across the United States, to mourn and also connect.  I felt this the most strongly when I met the director of Second Thoughts, an organization in Massachusetts fighting the good fight against a “Death with Dignity” act being proposed on the 2012 ballot.  I am fortunate to have such a resource close to me and yet also terrified that it is necessary.  As our conversation turned to euthanasia and assisted suicide, it was underscored for me that there are people in the world who think it’s perfectly valid to ask us all to disappear, to die with “dignity” and leave the fit, the healthy, and the “normal” in peace.  With such a law on the books, I know that my people could easily be coerced and worse, and suddenly these acts would be legal.

As I thought about my own challenges in reaching the Boston vigil, from inaccessible streets to a terrible lack of direction, I was heartened that I had made my way.  I made several connections which I know will continue to blossom over time, and really, in the face of sheer tragedy, there is nothing more I could ask for.  Through this project for George, I have found the community I was desperately seeking, and though we are bruised and battered we are never broken.

People gather with candles in Boston Common to remember George Hodgins and other people with disabilities murdered by family and caregivers.

Photo by Burton Pusch