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Friday, June 21, 2013

Murder and Hate Crimes: Part II

Robert Gensiak. Remember that name. I doubt anyone else will in a week or two. Be forewarned the following words will be gruesome. They are gleaned from a dozen or more news accounts.

Two years. For two years Robert Gensiak world consisted of one room. On the day he died, the 32 year old man who had Down Syndrome, weighed 69 pounds. When he arrived at the Emergency Room he has not been seen by a physician since 2009 nor had he received any medical care. He could not stand up and was so agitated he had to be sedated. He was hypothermic and his body temperature was 92 degrees. He was severely malnourished. He was found to have severe heavy plaque psoriasis. He was admitteed to the hospital on March 19 and died March 22. An autopsy was performed on the day he died. His body was covered from head to toe with a thick yellow scab like rash. The rash was cracked in multiple places leaving large open sores. Open woulds were visible on his shoulder, hip, back and foot. Blood oozed from the many cracks in his skin. The few remaining teeth he had were loose. Lice covered his head. There was no food or fluid in his stomach. The cause of death was sepsis due to break down of the skin. The autopsy report made me cry. Thankfully no photos were included in the criminal complaint. The criminal complaint can read here:

The district attorney Andy Jarbola stated "this is the worst case of neglect I've seen in the last 26 years" and added the "family, the mother and two sister, basically let this young man rot to death".  The single room Robert Gensiak was confined to was filthy. The child sized bed he slept in was fecal stained. The chair he sat in was fecal stained as well. Investigators said the stench upon opening the bedroom door was over powering.

Robert Gensiak's mother, Susan, his sisters Joan and Rebekah, are accused of murder of the third degree, involuntary manslaughter and neglect of care-dependent person. Joan Gensiak was also charged with endangering the welfare of a child (she had a toddler living in the same residence). Joan Nensiak's child was placed in the custody children's youth services. Rebekah Gensiak is approximately eight months pregnant.

When I read about the condition of Robert Gensiak's body and living conditions I thought of the horrific images that emerged shortly after German concentration camps were discovered. The world recoiled in horror.  I had the same visceral reaction when I read about Robert Gensiak. I was horrified. This man suffered. The news and circumstances of Robert Gensiak death are being reported widely. In my estimation it is being used as filler. A 50 to 100 word story or one minute summary on news radio outlets. Only the local paper, the Times Tribune, appears to be doing some follow up. Predictably news reports are focusing on who to blame. Social service providers are being asked how could this have happened. How could a man with Down Syndrome fall through the cracks and be horrifically abused? I find this a very simple question to answer. Robert Gensiak existence was not valued. Federal and State budgets are being slashed and the most vulnerable among us are being hurt the most. Robert Gensiak death did not take place in a social vacuum. His horrific death is a clear sign we as a people have utterly failed. The Federal Government failed this man. The local social services agencies failed this man. The disability rights community failed this man. The Department of Public Welfare and local human service agencies failed this man. We all failed.

I have no interest in assessing blame. Based on news reports, I am appalled at the reaction of some. Patrick Quinn, director of residential and adult day services for Arc of Northeastern PA implies help was a phone call away. William Browning, the local County's director of human services stated "The thing is they have to make the phone call, but sometimes that doesn't happen". Browning went on to state there are several county and nonprofit programs available for people with intellectual disabilities. He added "It's a pretty robust network". I find this hard to believe given the brutal federal and state budget cuts. What I would like to know is who was supposed to make a call on behalf of Robert Gensiak? His mother or sisters who are charged with murdering him? A physician he had not seen in two years? Who is the they Browning refers to?

Robert Gensiak is like many other people with a disability, physical or cognitive. He lived in complete and utter social isolation. He was abused by family members--the same people that are supposed to love and care form him. No individual or agency stepped forward to help. Robert Gensiak death is being framed as a horrible incidence of abuse. He was indeed abused horribly. In framing his death this way Robert Gensiak is not the victim of a hate crime. The Federal Government is not getting involved as of today. To me, this is a double tragedy. First he was abused and his family is accused of murder. Second, his death is a hate crime but is being classified as a case of abuse.  Of course he was abused. The end of his life was painful in the extreme. So I ask the question why? Why is this not a hate crime? A substantial philosophical shift must be undertaken at a national level. Robert Gensiak died because he had Downs Syndrome.  He was killed because of his disability. This is the sort of discussion we need to address now.

Thursday, June 20, 2013

Murder and Hate Crimes Against People with a Disability

I do not write that often about two subjects disability related: organ transplants and the murder of people with a disability at the hands of their own family. I find these subjects too disturbing to devote a significant amount of time to. I know with certainty that I will never receive an organ transplant. The reason for this bothers me: my existence is not valuable. Few people with a disability get an organ transplant and I no longer have any trust in the system that decides who lives and dies waiting for an organ. The stories I read are just too horrible for me to deconstruct. The other topic, a subject I have never addressed on my blog, is the murder of people with a disability. I have discussed the  legal prosecution of family members such as 23 year old Daniel James whose parents took him to Dignitas and facilitated his suicide in 2008. Cases of assisted suicide, specifically when family members help a sibling, parent, or child with a disability die, are framed as mercy killings. These stories abound and few people who kill their disabled loved ones are ever convicted of a crime. While I consider these murders hate crimes such a position is unusual. I am not alone in my thinking. People in the neurodiversity community, too often the victim in so called mercy killings, have been particularly vocal about the murder of people with disabilities. Autistic Self-Advocacy Network (ASAN) is calling for the recent death of Alex Spourdalakalis to be considered a hate crime. I wish them well but do not expect ASAN to succeed. The fact is killing a person with a disability is socially acceptable. It is an act of mercy. The murdered person is put out of their perceived suffering and the murderer is no longer burdened by the care required to keep a family member alive. It is a win win situation. For those that think my views are harsh I suggest you read S. E. Smith in XO Jane.

I do not know too much about S.E. Smith aside from the fact I find her writing about disability and feminism to be top notch. Her most recent article in XO Jane, my favorite online feminist magazine, is particularly pointed. I share Smith's rage. Exactly, how many people with a disability need to be murdered before people and the mass media get the idea: the murder of people with a disability is often a hate crime. How many people know the names Tracy Latimore, Markea Blakely-Berry, George Hodgkins, Ky;a Puhle, Tom Inglis, Daniel Kirby, Karandeep Arora, Leosha Barnett, Ajit Singh-Mahal, Gerren Isgrigg, and most recently Alex Spouralakalis. The violence is shocking. The murders are tortuous and premeditated. Children with disabilities have been starved to death by their parents. People with a disability have been shot and stabbed to death by friends, family and strangers. Murder suicides are not uncommon.  Smith soberly notes the biggest potential source of abuse for people with a disability is their own family. And what happens when people with a disability are abused or murdered? The family members who kill their own flesh and blood are lauded as heroes. The message is not complex: death is preferable to life with a disability. Smith maintains the narrative is consistent. I agree. She rails:

Do I sound bitter? Do I sound angry? Do I sound like a bad cripple? I'm not surprised. I am bitter, and I am angry, and maybe that makes me the very worst kind of cripple, but maybe it makes me the very best. Because I don't believe that some human lives are worth more than others, and I don't believe that killing human beings as though they're downer cows is a mercy. And this is something that I refuse to shut up about, even though most of the time it feels like no one cares, because I see my people dying at the hands of their family members and it makes me burn with fury. 
The fact is hate crimes against people with a disability are commonplace.  One needs to look beyond the statistics however because crimes against people with a disability are not reported. In 2011 the FBI reported that there were 6,216 single bias incidents. Of those bias crimes reported 0.9 % were disability based. There is obviously a profound disconnect here. Simply put, people with a disability do not report hate crimes. Even when a bias crime is reported by a person with a disability it is usually classified as being an incident of abuse. On the rare instance when a disability hate crime is reported in the news, blame is levied on the lack of "social services".  Is there a gross lack of social services for people with a disability? In a word yes. Is the lack of services the source of violence? In a word, no. Smith ends her powerful essay by stating Alex Spourdalakalis family decided he did not deserve to live. 

ASAN notes that: His death is not about services, nor is it about the difficulties associated with his disability. Prior to murdering him, Alex's mother was offered and refused services from the Illinois Department of Children and Family Services. Similar interventions have been documented in a number of murder cases involving disabled children. Child and family services have identified abuse risk factors., have attempted to reach out to help families with disabled children, have tried to prevent murder, and they have failed. To be disabled in this country is to be considered less than a full human being. To be a disabled child, or a disabled adult who needs supportive care, is to know that your life is literally in the hands of people you rely on to love and care for you. And those people may well think that murdering you would be doing you a favor. 
Read Smith's words carefully. I did and I shuddered. I shuddered because not long ago I was entirely dependent upon my family to care for me in 2010/2011. My family cared for me and loved me. Looking back at the time when I had no choice but to be bed-bound, I have many regrets. I was miserable and let my family and the world know it. I deeply regret this. I understand why I was miserable and depressed. I was in an impossible situation. My life went from fully independent to utterly dependent overnight. Today, I know I was lucky. And this too is why I shudder when I read about the murder of people with a disability and rampant social social abuse. People with a disability die of social neglect daily and some are murdered. The exact numbers are unknown. The best indication we have as to the numbers of people with a disability who are abused can be found in accounts at the Bureau of Justice Statistics. 54 million Americans with disabilities experience serious violence at a rate more than twice that of the general population. I believe this is a human rights tragedy that is being swept under the carpet. It is too horrible to contemplate because it can happen to anyone with or without a disability. For the odds are good if you live long enough you too will become dependent upon others. As a culture, we shun dependent or non productive people. We place the elderly in nursing homes. We create groups homes for those with cognitive and physical disabilities. People with mental illnesses are sent to institutions. Schools have resource rooms to isolate students with special needs whose presence is upsetting to other children. We have "special transportation" in the form of short buses to stigmatize children with a disability. 

Let me ask the following: Who is Matthew Shepard? I would bet most American adults that follow the news in a cursory manner can answer this question. I bet some would even recall that in 2009 President Obama signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Act. Let me ask another question that I suspect takes one into unchartered territory: does the aforementioned legislation that expanded federal hate crime law include disability? The answer is yes, an affirmative that would puzzle the average person. When we think hate crime images of the KKK and a burning cross come to mind. Does disability figure into the equation? Not at all.  So let me end with another question: Who is Jennifer Daugherty? If you do not know the answer please google her name. Read about this woman and then tell me hate crimes against people with a disability do not exist.