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Friday, October 24, 2008

Parents and Disability

This has been a bad week. It has been three years since my father died. I will never forget the night he died and still mourn his death. Every night before I go to sleep the last thing I look at is a picture of him holding the reigns of West by West, a stakes winning race horse he owned. The look in his eyes is a mix of pride and happiness. This is how I remember him--a proud dignified man that could accomplish anything he put his mind to. His inner strength, discipline, and will power was inspiring and as a child more than intimidating. I both loved and feared my father. By fear I mean I always strived to meet and exceed his expectations because I did not want to disappoint him. I never felt pressured and in looking back on my childhood cannot imagine how a human could have been a better father. Amazingly, I can say the same thing of my mother, she too was an ideal parent. The older I get the more I realize how lucky I am to write this. Such a sentiment makes me shudder about what could have been, that is what my life might have been like had they not treated me as an equal to my siblings that could walk. Perhaps this is why I have been carefully following the news reports in Britain about the death of Daniel James. Why, I wonder, did James parents not react to disability the way my parents did.

Last night I had dinner with my mother and we spent more time that usual telling old war stories. By war stories, I refer to hard times I had growing up with profound neurological deficits during a medical era that did not include CAT Scans and MRI machines. While I recall far too many hospitalizations and painful procedures what I remember the most is my parents determination that I would receive the best medical care. In return, I was was expected to keep up with school work and they reminded me that just because I was sick did not mean I would be treated one iota different. My parents reminded me that I may have had physical deficits but my mind worked perfectly fine. I knew as they did a lot of kids were in much worse shape than me. The underlying message was that I should suck it up and move on with life. Pity was not in their realm of understanding. They told me and my siblings that in the Peace family no one gives up and all are treated equally. By extension, we were expected to stick up for one another and ourselves. If we encountered trouble beyond our ability we were expected to seek their help.

My parents tough love and belief in my innate ability was a life lesson I wish Mr. James parents had bestowed upon their son. When I told my mom about what Mr. James parents did, assisted in his suicide she visibly shivered. Her response reminded me of one of an encounter I had when I was first disabled. I recall going to high-school after I began using a wheelchair. I had not been to school for a long time and I was extremely anxious about returning. I was a senior and drove myself to school where I got my first lesson about the lack of wheelchair access. There was only one accessible entrance and handicapped parking did not exist. I moaned and groaned about this when I got home and my mother got increasingly short tempered as I spoke. She told me to stop complaining and do something about the lack of wheelchair access. I wondered what I could do as a student? She told me that when I drove to school he next day I should park in the principals spot since the school had no handicapped parking. If the principal had a problem with that, he should call her. I loved the idea, parked in the principals spot and during my first period the principal came into my class looking for me. He wanted to know why I parked in his spot. He was not amused and my peers looked at me in shock. With resolve I replied there was no handicapped parking in any school lot and only one accessible entrance. I did not know what else to do except take his spot since I had no where else to park. Satisfied with my answer, the principal left the classroom. The next day two handicapped parking spots were next to the principals space in the lot.

I learned two valuable lessons thanks to the seemingly minor experience described above. First, I had the total support of my parents. Second, my wheelchair did not, to borrow the words of Mr. James, make me a second class citizen. Thanks to my parents, I knew that I was no different than any other person that could walk. They expected me to defend my human rights. Thus when I think of Mr. James and his parents I feel deeply depressed. Why did Mr. James and his parents accepted society's overwhelmingly negative view of disability. Why I wonder could they not support their son's inherent humanity? Is walking really that important? I condemn the parents decision to have a hand in their son's suicide. It was a cowardly and selfish act. Because of their actions Mr James suicide is now more than a family tragedy it is a social statement. They have sent a clear message to all those that read about their son: the life of people who are disabled is not valued. Death is preferable to disability. This is a gross violation of the human rights of disabled people in England and beyond. My mother and father knew this 30 years ago. Too bad the rest of society has yet to acknowledge this fact.

Thursday, October 23, 2008

Palin's Advocacy for Special Needs Children Needs Work

I am weary of Palin's rhetoric that she is an advocate for children with special needs. She has repeated this so many times that I think her statement has become a political mantra. Perhaps Palin thinks if she says "I am an advocate for special needs children" in every speech this will become a fact. I sincerely hope those unfamiliar with disability rights are not naive enough to accept Palin's words. I for one see through this smoke screen that has no basis in reality. Palin's advocacy for "special needs children" is a emotional ploy designed to sway voters and create the illusion that she cares about people like her son Trig. The reality is she is not in any way shape or form an advocate of special needs children or disabled people. Her action not her words demonstrate this.

When Palin was in Colorado early this week she spoke out against Amendment 51. Amendment 51 seeks to raise the sales tax by one cent on every $10 spent in the next two years. The tax is earmarked to help the 12,000 special needs children and adults who are on waiting lists to receive state service such as nursing care and job training. The money is specifically designed to help people like her son Trig and others with cognitive disabilities. Why is Palin against Amendment 51? She thinks "there's got to be an alternative to raising taxes. It's a matter of prioritizing the dollars already there in government". Does this mean the money already exists to help special needs children? If so, how does Palin intend to change existing priorities so children like her son Trig can enjoy the same civil rights as others? This is pretty hard to do when the McCain/Palin campaign does not have a platform that outlines how they would help special needs children and disabled adults. The bottom line, the gritty reality, is that Palin's words and actions do not correspond. She cares about special needs children in name only. Palin blew a chance this week to be the "advocate" she says she is. Maybe I am jaded from living in a heavily taxed state like New York but I would pay the modest sales tax increase for two years knowing it would help 12,000 people that desperately need state support. This is a matter of money and the human rights.

Wednesday, October 22, 2008

Daniel James and Fear of Disability

Mainstream media outlets in Britain continue to defend James decision to commit suicide. Euthanasia advocates are rallying around Mr. James parents, characterizing them as selfless angels who gave their son an escape from his body that was a prison. There is no doubt that Mr. James and his parents have the overwhelming support of the general public. I find this frightening and confusing.

I am scared and confused because I want to know what other people will be hailed or encouraged to kill themselves. Is it okay for all people with a spinal cord injury to commit suicide? If not, where does one draw the line? Is there a particular level of SCI that is unacceptable? What about people with MS or ALS? At what point is it acceptable for them to end their life? What about elderly people with dementia? Is their life worth living? Who gets to make these decisions? Does a disabled person get to have a say in whether they live or die? These question have insidious implications that affect all humans. James death has sent a message to disabled people and the general public--your life is not worth living. No one questioned why James felt like a "second class citizen", this social construct was accepted without thought. This makes me very worried and brings me back to one of the very first posts I made on this blog. I worry and am afraid to go to the hospital. What if a doctor I have never met thinks life with a spinal cord injury is not worth living. This doctor may have just read about the parents of a person with an identical injury that committed suicide. Perhaps this doctors assumes I consider my body a prison, my life nothing short of miserable. Given these variables, will I receive the same medical care as a person that walked in the door to the emergency room? In sincerely doubt it. And this is in part why the James case is so scary. While I do not want to judge Mr. James and his parents, I condemn the implications of their actions. I have a right to live a rich and full life as did Mr. James. I mourn Mr. Jones death and will continue to rail against the society that made him feel as though his life was not worth living.

Tuesday, October 21, 2008

Daniel James in the UK News

The death of Daniel Jones I wrote about yesterday has been officially sent to the Crown Prosecution Service Complex Casework Unit. This special unit deals with high-profile complex crimes. A CPC spokesman has stated that "The head of the Complex Casework Unite will review the police file and then make a decision on whether to proceed with a prosecution or not".

I have no idea whether Mr. James parents will be prosecuted. Frankly, I do not care. What I am interested in is the debate that is now raging in newspapers, magazines, and blogs such as this one. What I have been struck by is the overwhelming negative description of disabled bodies that appear in newspaper accounts. I have given up trying to count the number of times I have read "wheelchair-bound", ""wrecked body", "helplessly crippled", and other derogatory phrases. It is abundantly obvious that in Britain the disabled body is not valued and the lives of disabled people are considered markedly inferior. In fact, a common theme in some news reports are that death is preferable when compared to life with a disability. This enabled some to portray Mr. James parents as martyrs or saints. For example in the Herald Colette Douglas Home wrote a story entitled "Was Daniel's Death the Final Act of Parental Love?". She questioned how she would react if her son had a similar injury to Daniel James. "How would his father and I have coped if he'd been condemned to immobility at the peak of fitness?" Homes went on to to state that "sporting men of 23 are like unbroken colts. They are vital, forceful personalities; physical creatures with boundless energy. Their heads are filled with dreams and ambitions". At no point in my life have I ever felt "condemned" by my inability to walk or move my legs. The vitality that Homes describes has more to do with youthful enthusiasm than sporting life. Indeed, it appears as though only physically fit young men are capable of dreaming big and possess boundless energy. This outlook she assumes is beyond the ability and imagination of disabled people.

The most disturbing aspect of the news reports about Mr. James death is the idea that suicidal thoughts and disability go hand in hand. That is it is perfectly reasonable for disabled people to consider suicide. In fact, many reports I read characterized Mr. James attempts at suicide a "normal" reaction to spinal cord injury. For instance, Mr. James mother is quoted as postulating if one "had a son, daughter, father, mother, who could not walk, had no hand function, was incontinent, and relied on 24 hour care for every basic need and they had asked for her support what would they have done?" Placed in Mrs. James situation I would have been anguished yet suicide would not have been within my realm of choices for my son. Mr. James was injured just 18 months and was not terminally ill. He had everything to live for that any other 23 year old looks forward to who can walk. Again, this line of reasoning is based on the assumption death is preferable to life as a disabled person. Let's try changing the variables and see if thoughts of suicide are considered "normal": What if a child was clinically depressed, bipolar, or raped? Would suicide be considered an option? Not a chance, in fact the parents that suggest such a course of action would likely end up in jail.

Why is death preferable to disability? I have not a clue as to why this line of reasoning is so widely accepted. Perhaps it is easier and cheaper than insuring social services exist that enable disabled people to live a rich and full life. Death is after all a definitive "solution". What I keep returning to is not the discussion about the parents role in their son's death but the social failure that enabled it to take place. This social failure will not garner any headlines, prompt people to get into a fierce debate about quality of life issues, or make people turn on the TV news. The only way to change the social perception of disability and prevent other deaths such as Mr. James is for society to accept and incorporate disabled people into mainstream society. For that to happen, accessible and affordable homes and mass transportations must exist. Barriers to inclusion in the work force and in schools for disabled people must be stopped. In short, disability must become ordinary, a part of life for some but certainly not all. When I can leave my own front door and not worry about being accosted socially than I will know equality exists. Until all disabled people share that same sense of equality needless deaths like Mr. James will continue. This is nothing more and nothing less than a human rights issue. This is not sexy but the reality that I know, a knowledge based on dealing with disability based prejudice for the last thirty years.

McCain and Disability Policy

In recent posts I have referred to the blog Special Needs Truth 08. Although an obviously partisan site, the information and links provided are always interesting. I am in agreement with much of what I read at Special Needs Truth 08. The posts are direct and highlight the difference between what McCain says and what he actually does. Regardless of one's political viewpoint, I was stunned by the following post: McCain and Obama were invited to participate in a forum about disability in Athens, Ohio. Obama sent Kareem Dale, National Disability Vote Director to participate in the forum. Who did McCain send? No one, yes, you read that correctly, McCain sent no one! MCain did have Donna M. Jones, National Coordinator of the Americans with Disabilities for McCain Coalition, send an email. Special Needs Truth 08 quotes from Jones email:

"The McCain campaign does not have a vetted disability policy to release at this time. I also do not have any further information on when we might be releasing a platform discussing the senator's stance on issues that relate to people with disabilities. I understand that in this contentious political season, the needs of people with disabilities must be addressed as part of the policy conversation. It is my hope that we will be able to release a vetted policy from Senator McCain in the near future. That being said, I will not be able to send a surrogate to discuss a policy Senator McCain has not approved."

Even if I wanted to, I have no clue how to put a positive spin on the above statement. McCain has no vetted disability policy? This comes from the man whose running mate characterizes herself as an advocate for "special needs children"? How can one advocate for the needs of "special children" an disabled people in general if there is no disability policy? I did not need further reasons to know Obama is the clear choice for disabled voters. The total lack of a coherent disability policy only added to an already long list of reservations about McCain. But beyond my reservations I am increasingly convinced that there is a profound difference between what McCain says and reality. It is easy to say "I support special needs kids" or "Palin has a bond with special needs families". These are great sound bites but where is the substance and evidence these words will be turned into action? Now I know a plan for action does not exist. I did not state this, McCain's own people did! Gosh, don't you just love politics.

Monday, October 20, 2008

Life Worth Living for Second Class Citizens

Over the weekend I carefully followed news reports about Dan James. I doubt readers in America know who Dan James was or the circumstances that surround his death. Mr. James, 23 years old, was by all accounts a gifted British rugby prospect who expected to become a professional player. Mr. James' ambition to become a professional rugby player ended last March when he was paralyzed during a training session with the Nuneaton Rugby Club. Mr. James struggled to cope with his paralysis and attempted to commit suicide several times. Last month Mr. James persuaded his parents to bring him to Dignitas, a Swiss clinic founded by Ludwig Minelli. Dignitas is a non-profit clinic that takes advantage of "liberal" Swiss law to assist those that want to end their life. Mr. James died at Dignitas last month. His parents were the subject of an investigation. The results of the investigation have not been released.

Mr. James death is a social tragedy, a dark statement on how the life of those who are disabled are perceived. The media coverage in Britain is about what I would expect. The beginning point of every article emphasized two points: first, life is exceptionally difficult for paralyzed people. Second, over 100 Briton have sought to end their life at the Swiss clinic and this facts highlights the debate over the ethics of assisted suicide.

As for the difficulty associated with a life and disability, it is indeed hard. But what all the articles I read in British newspapers failed to acknowledge was the problems disabled people face are largely social. The overwhelming negative view of disability was simply a given, the starting point for a debate about how do you choose whose life is worth living. For instance, Mr James' parents only statement about the death of their son was that "it was an extremely sad loss for his family, friends and all those that care for him but no doubt a welcome relief from the prison he felt his body had become and the day-to-day fear and loathing of his living existence". They went on to state that their son "was not prepared to live a second class existence". Where, I want to know, did this self hatred emerge? I also want to know why is it a given that people with disabilities are "second class citizens"? While no one wants to be paralyzed, myself included, I find it hard to fathom why Mr. James could not move on with life. Perhaps he took to heart the notion that paralysis leads to a grim life, one that does not include a family, sex, and athletic achievement. Perhaps he accepted the views of Libby Purves who wants to place the blame on the disability rights movement. In an article entitled "Its Time for a Clear Policy on Euthanasia" (Timesonline, October 20) Ms. Purves suggested a "side effect" of disability rights vocabulary was that "It may blind us to the utter visceral awfulness of confronting a major disability, especially when young. 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". Ms. Purves may be right, perhaps simple minded people will indeed flinch but civilized beings will reject such a primal or thoughtless response. But enlightenment is not within Ms. Purves realm as she goes on to write "we should not prattle about fulfilling lives. Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralyzed. No amount of pious writing about the Disability Community should blind us to that". Yikes, these words are sobering to me. If this is an indication of what people think the disability rights community has made little if any progress.

As for the debate about assisted suicide, I do not want to enter that discussion on the defensive nor do I want to see Mr. James death used by those who support or oppose assisted suicide. This sort of debate misses the point and enables people such as Edward Turner, an advocate for "assisted dying" whose mother ended her life at Dignitas, to argue Mr. James death "breaks new ground". From my viewpoint, the only new ground broken was at Mr. James grave. Disability based bigotry has been present for decades and has crushed the lives, hopes, dreams, and ambitions of an unknown number of people. If Mr. James is to be made out to be a victim it is a victimhood that is directly related to the innate prejudice against disabled people. I for one do not want to listen to Mr. Turner's distinction between "assisted dying" and "assisted suicide". That debate has nothing to do with Mr. James, the difference between depression and terminal illness or end of life issues. The fact is Mr. James would be alive today if the stigma associated with disability was forcefully rejected by all people instead of accepted as a societal norm. Thus the assisted suicide debate in this case is a smoke screen for the real problem Mr, James, myself, and other disabled people encounter. Sadly, the issue of disability rights will most likely be totally ignored in Britain and headlines will focus on the sensational aspects of Mr. James death. This is particularly unfortunate as I thought great progress in disability rights has taken place in Britain.