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…)