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Wednesday, May 25, 2016

Too Much Sympathy? Bonnie Liltz Speculation

One of the great benefits of writing blog entries is the feedback I get from readers. This is a double edged sword though. I get many emails and insightful comments from those with a similar philosophy of life. I find this gratifying and without question supportive comments lessen my  feeling of isolation. On the other hand I receive a healthy dose of stinging criticism some of which is blatant hate email. This bothers me. I read the stinging criticism and carefully moderate the comment section. I do my best to be fair to all those that write to me. I am willing to engage others who hold contrary views because this is a great way to learn. Another benefit of the comments section is the links to essays and news stories readers send me.

Last night a reader sent me a link to a news story out of Chicago. Two mainstream news outlets reported that Bonnie Liltz was admitted to the hospital. She was in prison a total of four days. Liltz's lawyer, Thomas Glasgow, told reporters he knew this would happen. I knew this would happen too. Her hospitalization could be a by product of the overwhelming sympathy she has received from across the nation. I do not know if this factually correct. I am speculating here. Based on the actions of her lawyer before and after Liltz was convicted of murdering her daughter Courtney it was made very clear Liltz's body had been "ravaged by cancer". Again, I have no idea how ill Liltz is. Based on news reports she was admitted to Cermak Hospital, the medical facility that serves the inmate population, and transferred again to Stroger Hospital. This was set in motion by her lawyer who filed an emergency motion requesting Liltz bail be reinstated or for Liltz to remain in Stroger Hospital. Liltz will remain at Stroger Hospital until a June 7 hearing.

Glasgow is doing his job. He wants to keep his client out of jail. Glasgow stated that Liltz likely got an infection in jail. Her infection is related to her ostomy pouch. Liltz was admitted to the hospital for dehydration and further testing. I am well aware that dehydration can be very serious. I know this because I live on the edge of dehydration on a regular basis. Accessible bathrooms remain in short supply. Liltz may be very sick. She may have a severe infection. She has the right to privacy as does any sick person in the nation. Yet there is level of legal gamesmanship that may be involved in her hospitalization. Is her lawyer using an immediate illness to set up up a compassionate release request? I am no legal expert but this is a logical next step given the overwhelming support she has received. I have no idea how the compassionate release process unfolds. I did spend some time on various websites and have no idea what to make of compassionate release requests. A few years ago NPR did a series of stories in which terminally ill inmates died in prison. Some of the stories were heart breaking. I also do not know how successful compassionate release requests are. Based on a google search and an hour of reading these requests seem to be a polarizing issue within the field of criminal justice.

I do not typically engage in speculation. Yet there is something about the Bonnie Liltz case that is lingering in my mind. Maybe it is because of Robert Latimer who was convicted or murdering his daughter Tracy. Years ago this was a huge case in Canada and it was hotly debated at a national level. Maybe it is because of another case in Canada this year. In March Cindy Ali was sentenced to life in prison with no chance of parole for murdering her daughter. Like Courtney Liltz and Tracy Latimer, Cynara Ali was severely disabled. Unlike, Liltz, Ali tried to cover up her murder. Regardless, this pattern of parental murder is astounding. How can we let this happen? As I wrote before, murder is murder. This appears to not be the case when a parent murders their severely disabled child. I can't seem to let this go. It is why I take the ASAN Disability Day of Mourning seriously. Link: http://autisticadvocacy.org/2016/02/disability-day-of-mourning-vigil-sites/ In the past five years over one hundred and eighty parents have murdered their disabled children. Every March 1st vigils are held nation wide. Such vigils get virtually no publicity. That's okay with me. I prefer to mourn in private. March 1 of 2017 is already on my calendar. I hope readers will put it on your schedule as well.

Sunday, May 22, 2016

A Second Class Existence: Me Before You Gets It All Wrong

Daniel James died in 2008 at the age of 23. I vividly recall the circumstances of his death because they truly shocked me. James was a gifted athlete who aspired to play professional rugby in the United Kingdom. James did not become a professional athlete nor did he celebrate his 24th birthday. James had an accident in March 2007 and experienced a spinal cord injury. He was hospitalized from March to November. His injury was complete at C6/7. Once medically stable he received rehabilitation at the National Spinal Centre at Stoke Mandeville. In November he returned home and lived with his parents. Adjusting to his injury and life as a quadriplegic did not go well. He attempted suicide more than once. He was very clear that he wanted to die. In February 2008 he contacted Dignitas and wrote that "my primary reason I wish your help is simply that I want to die, and due to my disability I am unable to make this happen". On September 12 2008 a physician who worked at Dignitas gave James a lethal dose of medication. Only 18 months after his injury James was dead. I was shocked by this timeline. I was shocked parents would agree to accompany their 23 year old son to Switzerland to die. I was shocked the Crown Prosecution Service concluded that prosecution of James parents would not be in the best interest of the public. Link: http://www.cps.gov.uk/news/articles/death_by_suicide_of_daniel_james/
Like the Bonnie Liltz case I have written about this week, James parents received an avalanche of social support. The very idea of prosecuting James parents was believed to be a gross miscarriage of justice. Editorials were written praising James parents decision to let their son die. They were characterized as astoundingly selfless for not only allowing their son to die but to accompany him was a testament of their love. James parents statements in the press fed off the idea that life post spinal cord injury has no value. They maintained their son simply could not accept life as a "second class existence". They wrote his death was a "welcome relief from the prison he felt his body had become and the day to day fear and loathing of his miserable existence." Death was clearly the only reasonable choice. They further noted: "He couldn't walk. He had no hand function. He was in pain in all his fingers. He was incontinent, suffered spasms in his legs and upper body and needed 24 hour care. His only option was to starve to death. 
James death was front page news in Britain and became part of the discussion about whether assisted suicide should be made legal in Britain. At the time another Britain, Libby Purves, a well known broadcaster and novelist, was writing editorials and advocating assisted suicide should be made legal. In one editorial, "It's Time for a Clear Policy on Euthanasia" she wrote an unintended side effect of the disability rights vocabulary was that "It might blind us to the utter visceral awfulness of confronting a major disability, especially when young [An obvious reference to James]. As civilized people we do not allow ourselves to flinch at a half wrecked body in a wheelchair, yet the flinch and the fear are still there inside". 
The flinch and fear is still there.
I have read these words many times. Do people really flinch when they see me? Do my students flinch when I enter a classroom? Do my fellow scholars flinch when I enter a room? Do family and friends flinch when we meet? I would contend the only people who flinch are those with a typical body who deeply fear disability. Apparently these people abound. The fact they don't know a person with an actual disability empowers them to freely imagine what a rotten existence we crippled people are forced to live. For if we people with a disability were truly brave and strong we would kill ourselves and thereby end our misery. Those of us who live, learn and adapt to a disability are an inconvenient reminder of all that can go wrong in life. Thus we are exactly what James felt--a second class existence. We are ever so special and only because civilized others have compassion do we people with a disability exist. The problem is we people with a disability have a radically different view. We value our lives. We maintain the same dreams and goals as typical others do. We want to have a family. We go to school. We get married. We get divorced. We do all this in the face of deeply ingrained ableism.  Our civil rights are routinely violated. We encounter needless obstacles in all walks of life. Housing, unemployment and poverty all go hand in hand when living a rich and full life with a disability. Worst of all is the utter disrespect and unwillingness to listen. Disability is terrible. This is a given. Disability is individualized-- it is always individualized. It is individualized because our words and our lives are unwanted. It does not matter what we say because our words are dismissed. We cannot not be happy and content. Hence James parents can say and believe the following: 
Whilst not everyone in Dan's situation would find it as unbearable as Dan, what right does any human being have to tell any other that they have to live such a life, filled with terror, discomfort and indignity, what right does one person who chooses to live with a particular illness or disability have to tell another that they should have to.
Well said. There is only one problem--this is contingent upon the individualization of disability. We people with a disability are distinct minority group. We have civil rights. We have human rights. The Americans with Disability Act protects my civil rights--the law is civil rights legislation. The rights of people with a disability are also protected abroad. The UN has the Convention on the Rights of Persons with Disabilities. There is no doubt the letter of the law is on the side of people with a disability. Despite 40 years of progressive legislation in the United States, disability based discrimination remains wide spread. We people with a disability are often rendered silent, our words quickly dismissed. I can state with certainty that I do not live in terror.  I live a dignified life. I am quite content and happy to be alive. That is the gospel truth.
I have been thinking a lot about Daniel James in recent weeks. In June a film is being released that I know will be dreadful. James was the inspiration for the book and film Me Before You. A close friend deemed it "Titanic meets Million Dollar Baby". I would characterize it as another film in a long line of what I call the disability snuff genre. If that phrase upsets people good. I want you to be as upset as I am.  The representation of men with a high level spinal cord injury is a worn out trope. Death is preferable to life as a high level quad. The higher the level of injury the more likely a character is cheered to his death. Paraplegics can zip around in sporty wheelchairs, play sports, participate in the Paralympics but we remain tortured souls but rarely are we the inspirational figures for death. This domain is reserved for quadriplegics. Think Million Dollar Baby, Whose Life is it Anyway, Sea Inside, The Switch, etc. Variations on this theme exist but its a good bet if an actor is portraying  a quadriplegic the characters is almost certainly going to die. The death in most cases is the highlight of the film. Me Before You is simply the latest film that sends a simplistic message that typical people seem drawn to like a moth to a flame. In a Good Reads interview the author, Jojo Moyes, was asked what inspired her book and subsequent film. 
This young rugby player in England, who was 23 years old, persuaded his parents to take him to Dignitas after he'd spent several years as a quadriplegic following a rugby accident. I was so shocked by this story, because I  couldn't believe a parent would take their own child to this place. I guess I was quite judgmental as well. The more I read up on it, the more I realized that these parents were in an impossible situation because this young man had expressed a determination to fulfill his wish by any means. Being physical his whole life, some people are just going to refuse to adapt. They're just not going to do it. It became harder for me to say "Well this is how it should be". I think as human beings  we naturally look for black and white. We look for resolution because its uncomfortable to live with dissidence in our brain
Moyes stated she did not know any quadriplegics nor did she interview a paralyzed person. She did speak with a family member who "suffers" from a progressive disease. Moyes was also asked would she recommend the book to a person who is a quadriplegic. Her answer made me laugh and grown at the same time.  She stated that when she was in the United States the Christopher Reeve Foundation loved the book. "They had read the book and wanted to support it in any way possible". She went on to note that she she received thousands of emails, many from quadriplegics who said "Thank you for reflecting our lives and also for making a quadriplegic male a romantic hero who is sexy!"
The obliviousness here is nothing short of stunning even for a quadriplegic wants to die snuff film. The main character, Will Trayner, is never given a voice. He is a mere foil for Louisa Clark. In a New York Times review of the book the reviewer put it succinctly; "Lou has never fully lived: Will has, but no longer can... He had scaled rock faces at Yosemite, swum in volcanic springs in Iceland, sampled warm croissants in the Marais and had his pick of glamorous, leggy girlfriends. After the accident, he can't walk, can't feed himself, can't have sex. The only power he believes he retains is the power to end his life; and, as a man of action, he wants to exercise that power".
This is a first. Will is the first asexual romantic hero who wields his power to die. It is a given, he will die because, well, that is what all people who are not quadriplegics believe. The only quadriplegics that want to live are asexual, bitter, angry people who lash out at all the people foolish enough to engage them. Even when a quadriplegic like Will has it all--he is rich beyond belief, lives a life of luxury and can do pretty much whatever he wants--still chooses to die. Out of the goodness of his soul he will not allow himself to ruin Louisa's life hence after his death he wills her his money. Only Hollywood could come up with such a story line that is so grossly convoluted and devoid of reality. 
Predictably, there are more than a few angry people with a disability who deeply object to the book and film. If the film is a hit, and I believe it will be, there is no doubt organizations such as Compassion and Choices will exploit its popularity to help pass assisted suicide legislation. Multiple people with a disability have already weighed in with scathing words. I doubt their words will resonate beyond the disability rights community but they reinforce I am not alone. Here are a few links:
Crippled Sholar wrote the most detailed essay. All the critiques note that it is a given any person who is a quadriplegic would prefer to die. There is no need to even discuss why a quadriplegic would prefer to die. That is the unquestioned premise. Much drama is manufactured to reinforce this assumption. Will is essentially used as a prop to reinforce what non disabled people know about disability. Will is the perfect dignified puppet. Strong, silent, and asexual.  Pretentious Best Friend wrote:
the film blatantly uses Will’s disability as a shorthand for chastity fetishism.  Twilight and Fifty Shades of Grey have popularized chastity fetishism by substituting sexual attraction with attraction to danger, which leads to problematic romanticism of physical and emotional abuse.  Me Before You takes the opposite tactic, by making Will so nonthreatening that he can’t even be conceived of as a sexual being.  His relationship with Louisa has no chance of sexual culmination (at least according to the logic of the film), so Louisa is free of the usual pressures placed upon women in relationships and therefore can pursue Will without being concerned that she will be expected to consummate their love.  This is exemplified by the fact that the film’s most romantic scenes (and a few comic ones) are of Louisa acting as a caretaker, and that Louisa doesn’t even bother to break up with her current monogamous boyfriend as she spends more and more time with Will.  Again, I understand the appeal of a platonic, nonsexualized romance, but it cannot come at the expense of the dignity to either party of the relationship, and Will’s portrayal deprives dignity to an entire class of disabled persons.
My outrage is shared by all those I know who have read the book and seen the trailer for the upcoming film. The potential damage this film can cause is significant. I recall going to the movie theatre to see Million Dollar Baby. At the end of the film when Maggie is killed the entire audience stood up and cheered. I was stunned. As people exited the theatre people would no look me in the eye. I was angry and wanted the bipeds who cheered Maggie's death to be as uncomfortable as I was. These sort of films are inherently destructive in large part because people with no knowledge of disability believe and absorb what they see in films. Moyes absorbed the case of Daniel James from an ableist perspective. She was willfully ignorant. Next month theatre goers are going to be entertained by the death of a quadriplegic man and the walk away message is simple--death is preferable to life as  quadriplegic. This is so wildly wrong I have no idea  how to undermine this line of reasoning. Dominic Evans expressed the same sentiment:
The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is an able-bodied actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are. Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true. I believe that if Hollywood showed more disabled actors, particularly wheelchair users, who we never see, and the stories were more reflective of the disabled experience, then people would believe disabled lives were worth living. There is a huge difference between a debilitating illness, such as brain cancer, in the end stages, and a person with a disability who is not dying. You can find success, love, fulfillment even if you happen to use a wheelchair. It is not the end of the world, and these films need to stop scaring people into thinking it is. We cannot change the narrative about disability when these kinds of films continued to be made.

I sincerely hope I am wrong about this film. Perhaps it will be a box office bust. Maybe it will fly in and out of theaters like most films do so these days. This film is a modern day minstrel show. White actors in black face. In this case, a non disabled actor playing a disabled man, a non disabled writer writing about disability and a non disabled producer producing a show about a man with a disability.  For me the take away message  can be summed up in a well known slogan: Nothing about us without us. Are you listening Hollywood? 

Saturday, May 21, 2016

Coastal Storm Awareness

For most of my life when I think about what would happen to me in the event of natural disaster, plane crash, train wreck etc. one thing springs to mind: I am screwed. When I fly the flight crew will once in a while say something to me that "In the event of an emergency landing..." I typically give them a snarky look as we both know the odds of surviving an emergency landing are remote. The odds of me, a wheelchair user, surviving an emergency are even more remote. Some how I doubt flight crew or my fellow passengers will run into a burning plane to carry me out. Not a chance this will happen.

Today I believe my chances of surviving a natural disaster are increasing by the day. I can state this with some authority as I was lucky enough to be part of a group of scholars who worked on a Sea Grant Coastal Storm Awareness Program. The project that I specifically worked on concerned Hurricane  Sandy and why people in the NYC area weathered in place or rode out the storm. Almost all people with a disability stated the same thing: they had no where to go. The City of New York was sued and the Federal Court ruled that the city discriminated against people with a disability because it failed to consider them in plans for a large scale natural disaster. Link: http://dralegal.org/press/federal-judge-rules-new-york-citys-inadequate-disaster-plans-discriminate-against-hundreds-of-thousands-of-new-yorkers-with-disabilities/

Much has changed since Sandy. Emergency managers are not only listening but including disability issues into evacuations plans. How well this will work at present is unknown. What I do know is that emergency planners are very much aware and concerned all people are evacuated. By itself, this is a huge leap forward. Below is a short documentary about our work.


Thursday, May 19, 2016

More on the Murder of Courtney Liltz

Yesterday I wrote about Bonnie Liltz who was due to be sentenced in court for murdering her daughter Courtney. The prosecutors in the case recommended she receive no prison time and simply be put on four years of probation. The Judge Joel Greenblatt rejected the prosecutor recommendation and sentenced Bonnie Liltz to four years in prison. According to various news reports, Liltz, appearing to be frail,  burst into tears upon hearing the verdict. Liltz’s family was stunned. Liltz bond was revoked and she was immediately taken into custody. The Chicago Tribune and multiple local Chicago news outlets covered the sentencing. The sentencing received some national attention as well. I spent the morning reading the reaction to the sentence. Not surprisingly, the reaction was highly emotional. The dominant theme was the case is tragic. Based upon my reading, the dominant opinion was that the sentence was far too harsh. This is not surprising. Life with a disability is consistently devalued. Stigma consistently clings to disability. We people with a disability are fearful reminders of just how fragile the human body is. Symbolically, we represent the limits of medical science and technology. Our lives are inherently compromised and we are less human. How do I know this? I am reminded daily by typical others in large and small ways. Today, my reminder was a trip through the comment sections of various newspapers that covered the sentencing of Bonnie Liltz. Below is a random sampling of what I found. It reflects an ugly side of humanity I have become accustom to encountering.

This woman should receive some serious credits for all the years she took care of this young lady whose own parents apparently are not to be found.

This sentence warrants an immediate appeal. This woman is *not* a criminal!

Daughter had zero quality of life.

Wrong headed decision for sure. Judges generally go with prosecutors. This poor woman will now suffer more. Judge Greenblatt got his pound of flesh

She should just get counseling. This not your normal case. imbecile judge.

The prosecutor asks for probation and the judge gives her 4 years? Insane. Sadistic.

This judge ought to be recalled or kicked off the bench. A desperate mother in a desperate situation. Shame on the Judiciary of Illinois!

Four years in prison is uncalled for. This lady is not a threat to society and prosecutors even asked for probation. This is a judge being a big shot on a woman who is already suffering. This isn't justice.

I support euthanasia for people like Courtney who suffered on a daily basis. This was a mercy killing from her mum,

For the judge to say what she did was not an act of love is what irritates me the most.

She should have gotten probation. What she did was out of love.

Joel Greenblatt -not exactly a man of compassion. Even the prosecutors asked for only probation. Now this woman's life is ruined even more. Greenblatt from his statements thinks he is God. Greenblatt should be removed from the bench.

The above comments are disheartening. They are a reminder of what people really think when disability in the broadest sense of the term enters one’s life. Let’s be very clear: Bonnie Liltz is now a convicted murder. Yet she has received an unprescedented amount of sympathy. A large contingent of people think she should not be imprisoned at all. One commenter quoted above suggested euthanasia should be a legitimate option for people like Courtney Liltz. The quality of life Courtney had was deemed substandard. Her death while sad was in fact a blessing, an act of mercy.   Stephen Drake was quoted in the Chicago Tribune and he really hit the nail on the head with the following: “Its almost a sainthood thing. This mother took care of someone no one else would want in her home, so maybe we should go gentler on her. In order to treat a perpetrator more gently than other perpetrators, we have to devalue the victim.”Link: http://www.chicagotribune.com/suburbs/schaumburg-hoffman-estates/news/ct-mother-killed-disabled-daughter-sentence-met-20160518-story.html

Living a devalued life is something I have forcefully rejected for the last 35 years. I do not consider my life as being devalued in any way shape or form. I am content with my existence and body. I wish others perceived me as equally valuable but I know that is not the case. Where ever I go I am a problem. Likewise, caring for Courtney Liltz was a problem. She had the mentality of an infant. She required a great deal of care. She was suffering.  She could only say a single word. This is a tragic existence for mother and child. The child in this case was a 28 year old woman. The bar was set low for Courtney’s care because her quality of life was equally low. Bonnie Liltz was praised for taking immaculate care of her daughter. All news outlets stated Courtney was kept clean. She was well fed.  She was in good physical condition. Mother and daughter slept in beds a few feet apart.  But wait there is more. Bonnie Liltz socialized with other people and included her daughter. She took her for walks. Her house was spotlessly clean. This makes no sense when compared to a typical parent raising a typical child. The implications here are obvious to me.  Apparently they were obvious to Judge Greenblatt as well.  In sentencing Bonnie Liltz he stated:

Life is precious. Even a life that is disabled. Even a life that is profoundly disabled. Your daughter, Courtney Liltz, was innocent and vulnerable and fragile. Her life was fragile. All life is fragile. The choice you made was not an act of love. It was a crime.


Murder is murder. All the emotion in the world should not obscure this fact but obscure it is when disability is present. Bonnie Liltz broke down in tears upon being sentenced. Her family and lawyer were shocked.  I may sound cold hearted but Bonnie Liltz did the unthinkable: she committed murder. Stephen Drake noted “we put high penalties on murder because we send a message that we value life”. According to the Bureau of Justice Statistics, the mean prison sentence for murder and non-negligent  manslaughter was nearly 20 years and 8 months; the median was 24 years and 3 months. I am no legal scholar but Bonnie Liltz got a very light sentence. She could have been sentenced as charged and convicted to 14 years in prison.  In theory Liltz could take back her guilty plea. She could then go to trial for first degree murder but this carries great risk in the form of a 20 year mandatory minimum sentence. For now, Liltz defense lawyer will file a motion seeking reconsideration of the sentence. 

I am deeply bothered by the way in which this case has been framed and the overwhelming support Bonnie Liltz has received. This case reminded me of a memoir I tried to read that has gotten uniformly high praise--High Blue Air by Lu Spinney. The book details the aftermath of Spinney's son who experienced a severe traumatic brain injury in a snow boarding accident when he was 29 years old. For more than 5 years she and her family cared for her son. She detailed his recovery and what it was like to care for someone in a minimally conscious state.  At some point, Spinney came to conclude her son's life was one long experience of unbearable suffering. She wrote:

I thought, how can he want to continue? His life was day-long, night-long torture. But I assumed there was nothing we could do except to continue doing everything we could to make his existence more comfortable. The most painful thing was imagining him, in his moments of awareness, feeling so profoundly lonely, unable to communicate, totally dependent on other people for every single aspect of his life. He was a ghost of himself.

I don't have the heart to recount the rest of this memoir. Suffice it to say, Spinney concluded the only "gift" I could give him was death. Death as a gift? A parent frames the death of their child as a gift? Between the murder and of Courtney Liltz and this memoir we are in unchartered waters. What happened to Dylan Thomas famous poem "Do not go gentle into that goodnight"? What happened to placing value on all human life? I understand broad based advances in medical technology have created unimaginable ethical conundrums and end of life care is exceedingly complex but where is our humanity. We live in a world in which a parent considers death is a gift to be bestowed upon her son. A world where a parent murders their child with a severe disability and is shocked she gets sent to prison. This is so wrong my heart breaks. 

Wednesday, May 18, 2016

Murder is Murder: Misleading Spin

On May 27, 2015 Bonnie Liltz murdered her 28 year old daughter Courtney at their home 30 miles outside of Chicago.  Bonnie Liltz survived the murder suicide attempt. Her daughter, Courtney, died a week later. Bonnie Liltz has received a great deal of sympathy. Her lawyer reports she has gotten letters of support from all over the country. Prosecutors and Liltz defense attorney, Thomas Glasgow, agreed that jail time is not going to be suggested. Initially charged with first degree murder in the death of her daughter last week Liltz pleaded guilty in Cook County Court to the lesser charge of involuntary manslaughter. Prosecutors have recommended that she receive four years probation and mental health treatment. It is possible the judge could send Liltz to prison for 14 years however this is not expected to happen.

What have I left out of the above story? Sympathy for a murderer? No prison time for a mother who murdered her own daughter? How is this possible? More astounding, cases like Liltz though uncommon are not exactly rare. The variable left out is disability--severe disability. Bonnie Liltz adopted her daughter at the age of 5. She knew Courtney had cerebral palsy and profound cognitive deficits from damaging seizures when she was two years old. Courtney could speak only one word: "Momma". Over the last year all news accounts have been extremely sympathetic to Bonnie Liltz. There is no need for me to provide links. The sympathy is universal. News accounts have been dominated by raw emotion. Bonnie Liltz is described as a uterine cancer survivor. Diagnosed at 19 years old her body was ravaged by radiation therapy and her survival came at great cost--she could not conceive herself. Hence she adopted Courtney and boundlessly loved her. She cared for Courtney and attended to all her needs 24 hours a day for two decades. They shared the same room and their beds were mere feet apart. Her friends and family told the judge Bonnie was devoted to Courtney--she was in fact her life. A friend stated "Courtney was always clean, neat and nourished". When Bonnie Liltz pleaded guilty the court room was filled with supporters. As for Liltz herself she stated in court "I would like nothing more than to turn the clock back and have the ability to care for her again. I have pain inside that is beyond words". According to court transcripts, Liltz recalls waking up in severe pain and "soiling myself and my bed. My heart was pounding and I was shaking and sweating profusely. She had just been given a grim prognosis from a physician and was convinced she was dying. She wrote a hastily written suicide note and added a lethal amount of prescription drugs into her daughter's feeding tube. She then drank what she thought was a lethal cocktail of drugs in a glass of wine and expected to die. In the suicide note she wrote "I am so sorry to put you all through this but I can't leave my daughter behind. She is my life."

No doubt this is a tragic story. Suicide is the tenth leading cause of death in the United States. As a father, murder suicide is unimaginable. But murder suicide is not unimaginable for all parents. Lilts'z concerns are in fact common among those parents that care for a severely disabled child their entire lives. Curt Decker of the Disability Rights Network hears this from parents who care for their severely disabled children. They know all too well that eventually they will be physically unable to care for their children. They know their children will out live them. They are justily terrified and their worries are universal--who will care for my severely disabled child after I die. This population of people, severely disabled and their parents who do care 24 hours a day, are nearly invisible. The social supports are grossly lacking. Bonnie Liltz had good reason to be fearful for her daughter's future care. In 2012 Liltz had surgery and had to put Courtney in a nursing home for a week. Courtney did not understand why her mother was not present. Upon her return home Bonnie Liltz knew her daughter was upset and not herself. Bonnie Liltz was appalled by the substandard care her daughter received in the nursing home. According to court transcripts, Liltz maintained she was neglected. Liltz said Courtney was "covered in drool, her clothes were wet, and she was sitting in her own filth in a corner. It was with that memory that I felt the only place I knew she would be safe and happy would be in heaven with me".

I understand the emotion. Any successful or failed murder suicide  is tragic. But lost in the emotion and support for Bonnie Liltz is a massive social failure. Parents of children with severe disabilities are terrified of what will happen to their children when they die. Think about this. Think of what this fear implies. Think of the injustice. Think of the substandard care. We are talking about the most vulnerable humans. How can we as an advanced civilization let this happen. For me the tragedy is that those parents who care for severely disabled children have a very real and legitimate concern. If I were in their situation I would be just as worried.

Compounding parents fears is the fact Bonnie Liltz is getting a great deal of sympathy. As many disability rights experts have noted, the implications for the sympathetic treatment Liltz has received is troubling. Did Courtney's life have less value? The lenient treatment surely indicates this. Murder is murder is it not? There is no doubt this case involved premeditation. Legal experts in Chicago seem to agree probation is an appropriate sentence. Jeffrey Urdangen, director of the Center for Criminal Defense at Northwestern University Pritzker School of Law believed the sentence recommendation was "not so much about sympathy but the prosecutor decided there was sufficient mitigating evidence. This is an exceptional case. Sending a woman who's got a critical illness to prison for an act for what some could interpret as mercy... There are so many facts that lessen her culpability"

These words terrify me. Is killing a severely disabled child an act of mercy? Is killing a person with what is perceived as being a severe disability mercy? The facts in this case are couched in kind words. Let me cut to the chase: Coutney Liltz's life was not valued. Life with a severe disability, especially a severe cognitive disability, is not valued. Such an existence is not valued and deemed less. Life with a disability is inherently inferior. Where does this line of logic end? Where does one draw the line? Are we going to try and eliminate all people with a disability as Hugh Herr of MIT is trying to do? Perhaps we just end the life of those with a severe disability? If so, how do we define and identify what is and is not a severe disability. If a person experiences a spinal cord injury at what level of injury is life not worth living. How about those that experience a traumatic brain injury? Are the lives of those in a minimally conscious state worth living? What about those with dementia? At what point is the quality of life so limited we can  end their lives?

The public health care implications are significant. According to Glenn Fujiura, professor in the Department of Disability and Human Development at the University of Illinois at Chicago, 80% of adults with significant development disabilities live at home with aging parents. Liltz is in fact not an isolated case but a harbinger of future cases. Fujiura notes the Liltz case is a prime example of a larger broken system. I predict without substantial social change cases such as Bonnie Liltz will become increasingly common. This grim thought is obscured by the mainstream media that focuses not on the larger broken system of inadequate social supports for the most vulnerable but rather on the diminished value we place on the lives of those who live with severe disabilities. Bonnie Liltz needed robust social support not sympathy. She valued the life of her severely disabled daughter Courtney. The fact our society did not provide adequate social supports for Courtney Liltz is the real tragedy. A 28 year old woman died needlessly. A mother felt her only option was to murder her daughter and commit suicide. This is the tragedy. Worse, more deaths will follow unless we pay attention to the very real social injustice that took place.

Wednesday, May 11, 2016

Ignorance Can Hurt

I did my least favorite chore yesterday. I went to the local laundromat. Those that read my blog posts on a regular basis know I have had many inappropriate social encounters while doing something as mundane as laundry. When compared to the past, what took place yesterday was a minor incident. I choose to do laundry at odd times. Who does their wash on Tuesday afternoon? I hoped no one. I was wrong. A few students from the local college were doing their wash. I never have issues with the college kids--they are glued to their cell phones or lap tops. The people I watch out for are men and women my age and older. This a generalization but I remain wary at all times. I literally never know what people will say to me. Well one man was watching me from afar and I thought he was going to check his dryer when he suddenly veered my way and said "I did not know you people could do laundry. You are amazing." I was not impressed. I did not reply. I intensely focused  on folding my clothes and scrupulously avoided any eye contact. The man pressed on: "You are inspiring. Really, I could never live in a wheelchair. I am going to tell all my friends about you". I look up and cannot hide my distaste. The man says "What? Why the look?". I reply "Think about what you are saying". Utterly immune he does not yield: "You are amazing." We have already established that I am amazing I want to reply but based on previous experience being a wise ass is counter productive. Then the light bulb goes off in the man's head: "You got here by car! You can drive! Wow, I am going home and will tell everyone about you".

This social exchange and thousands like it are a part of my life. They are part of my life 25 years after the Americans with Disability Act. They are part of my life after 40 years of progressive legislation designed to protect the civil rights of all people with disabilities. The glacial nature of such demeaning comments has worn me down. When I was young and full of piss and vinegar I might have told this man to fuck off. I rarely if ever do that because being confrontational does not work. Being confrontational has a boomerang affect. Instead of highlighting the fact this man is an ableist any anger on my part or snarky reply makes me look bad. I am instantly the problem. A sweet and innocent comment and high praise prompts anger? Wow, that stereotype of the bitter cripple who is mad at the world gets reinforced. Bipedal others know all. I am angry because I cannot walk. Using a wheelchair is bad. My life is hard. The ordinary is impossible. I am the plucky cripple who gamely moves on with life. My life sucks don't you know. How do I explain to an utter stranger that my life is quite good. I teach honors students at Syracuse University and have the respect of students and faculty members alike. How do I explain inspiration porn that has been imposed on me is deeply objectionable? How do I explain the long history of disability based oppression? How do I explain all this to a man in the local laundromat and do so in no more than a minute? Simply put, it is impossible and a classic Catch 22 situation.

I have had far more negative social interactions than the one described above. I don't know why but this social exchange rattled me. The rattle here is a deep rooted sadness. I have been paralyzed since I was 18  years old and have spent my entire adult life as a paralyzed man trying to make others see me as something more than a tragedy. I am a human being. I make a conscious effort to not hurt others. I do my best to be kind. I take great pride in teaching young men and women who are starting their adult lives by attending college. I was having a good day and this exchange ended it. I was once again reminded my existence is less. Indeed, my existence is so miserable being able to do laundry and drive a car is an accomplishment. The bar for people with a disability cannot be set any lower.  I returned home sad. I remained sad for many hours. I wondered why these sort of interactions are commonplace. The rational part of my mind could easily explain the sordid and depressing history associated with disability based bias. I know about the cultural implications of the ugly laws, forced and coerced institutionalization, segregated mass transportation, the exclusion of children with a disability from public schools until the mid 1970s, the lack of accessible housing, high unemployment rates associated with disability, poverty etc. I teach this to my students. The bottom line is that I am a human being and I was hurt. In contrast, the man I encountered was happy. He was going to call his friends and tell them about me. I assume they too will be inspired by my ability to do laundry and drive a car. If this is the case it will take generations before we people with a disability are truly equal. I often think about the progress of other groups discriminated against. Black people do not live in a post racial America. Women still experience gender based discrimination on a daily basis. Donald Trump wants to build a wall between America and Mexico to keep out rapists and illegal immigrants.

Occasionally I am asked, "Come on Bill, progress has been made. It wouldn't kill you to point out the positive developments". I cannot deny progress has been made. I cannot deny the law is firmly on the side of disability rights. All this is true. But educating people one by one in a country of over 300 million people is not an efficient means of educating the general public and that is what I am forced to do on a daily basis. I must be socially astute and polite in the face of ignorance. I change my schedule and routine to avoid people like the man encountered. I am regularly put in a position in which I must explain my existence has value. I do this and much more as a means of self protection. I am forever on guard and wary of others. This takes a mental toll large and small. The butchers bill yesterday was sadness. I shook it off as I always do before I went to sleep. Today is a good day, its sunny and warm (that does not happen often in Syracuse). My beloved lab Kate and I went for a pre dawn walk. I am going to campus to meet a foreign scholar who is young, smart, ambitious, and eager to learn. I am hopeful. I need to believe in goodness. I find belief in many places. Tonight I am going to Grey Rock Farm, a local CSA, for dinner. I love the sounds and smells of small working farms that abound in Central New York. Farms make me feel grounded. It reminds me of what a gift life is and that we humans are but a small cog in the cycle of life. Part of that proverbial cog is disability and bodily differences. Human variation is good and a vital part of evolution. I just wish others saw what I do when disability is present. I see the best of humanity and infinite possibilities.

Friday, May 6, 2016

Nonscientific Research and the X Men

In the last few years I have written about many unpleasant social exchanges with people in Central New York. I have had doors slammed in my face, I have been screamed at, and I have been denied service in the local diner. I have had men drop to their knees and pray for my rotten soul. However, in the last three months I have not had any note worthy negative encounters. What changed? My son moved to Syracuse where he works for a large nationally known hotel chain. He is saving up to buy a car and for the last four months we have shared my car. This has been a pain in the neck. Both he and I are not exactly skilled in terms of our organizational abilities. He has been late a few times dropping off the car and has a penchant for doing so at the worst possible time. We have miscommunicated more than once. We have in short messed up meeting each other at the right time and place too often. The car sharing is less than ideal but is a short term issue.

I will readily admit I have no issues with ruthlessly exploiting my son's bipedalism, youth, and typical male strength. As he knows, he saves me oodles of time. What is carefully planned on my part is what he does for me. Certain routine things I do are social battlefields with bombs lobbed my way on a regular basis. Hence, I do my level best to have him put gas in the car. People routinely harass me when I do this by myself. Offers of help are often used as a means of denigration or false praise. The gas station is a particularly hostile environment when I am alone. Another social battle field is the laundromat. If I could change one thing in my life it would start with a washer dryer in my little place I call home. Based on nearly two years of using a laundromat I can state with some certainty everyone who washes their clothes at the laundromat took a wrong turn in life. The human range who access the laundromat is wide. Stoned college students. Miserable parents. Elderly drunks. Academics like me. Everyone I encounter appears to have a story and are too eager to share it. Those religiously inclined are magnetically drawn to me. They are desperate to cure my body and soul. When I am not impressed with offers of help the reaction is swift and violent. So when I have a large amount of clothes to clean or lets say a seasonal change of bedding I try and bring my son with me.  While he can't fold clothes well, he can fold towels and sheets. He speeds up the process and we get out of dodge promptly. His presence alone protects me. His protection is very much appreciated but I am deeply torn and troubled. I have hesitantly concluded my existence is not only an affront to others but I am vulnerable physically and socially. I am far from equal in the eyes of the so called normate that abound.

What do we think when hear the word wheelchair?What do people think when they see me?





I know what others do not think when the word wheelchair is uttered or when I am present. Competence, power, ability, disability rights, community, father, mother, brother, sister, employer, doctor, employee, home owner, renter, land lord, beautiful, handsome, sexual, sensuous, lawyer, professor, president, governor. None of these things are thought of when I am present. My life is less. I am less. My social status is significantly reduced. I am a diminished human being. I am an open book for all others who have no qualms about asking rude and intrusive questions foremost among them is can you have sex. This is hard and I forcefully reject the stigma associated with disability. Thus being in public is never easy because I reject assumptions associated with wheelchair use. I will admit some days I fail. I simply cannot leave my house; I do not have the psychic energy to deal with able bodied others. But out I go on a regular basis. I wish I could say I do so with pleasure but that would be a lie. I have a deep yearning. I am lonely and as I age feel all the more isolated and have an urgent need to connect with people like me. How I hook into disability culture is a challenge. I am envious of deaf people who identify as Deaf with a big D and have their own language! Where do we cripples call home? This has occupied much of my thought and I have thought long and hard about other minority groups in terms of identity and community.

I need to do something. I believe I have acted somewhat cowardly in recent months. I cannot use my son as a social shield. How can I be strong? How can I be a bad ass. Enter my colleague Diane Wiener, a human ball of energy and brilliance. She organizes a yearly event Cripping the Comic Con at Syracuse University. Frankly I am not much of a comic book graphic novel kind of guy but Diane makes me think. Inspired and looking for strength I googled the X Men and its creator Stan Lee. The X Men I learned were created in 1963 amidst the turmoil of the Civil Rights Movement. Then it clicked. Lee wanted to create a comic that that highlighted bigotry and racism via science fiction. Magneto and Professor X were direct correlations to Martin Luther King and Malcolm X. I think I am far too Professor X and need to channel my inner Magneto. Next time I go out this is how I desire to appear. Dangerous and frightening. Take that bipeds.