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Saturday, August 24, 2013

Hate Crimes

I will assume most people interested in disability rights have heard about the hateful letter sent to the family of a person with Autism that lives in Newcastle Ontario. I showed this letter to my son earlier in the week when we were on the Canadian side of Niagra Falls. My son was outrage. Steam was coming out of his ears and profanity flowed from his lips. His face even flushed red. Aside from the hateful content what he could not wrap his head around was how the below letter was not considered to be a hate crime in Canada. I read multiple news reports and I understand why this vile letter is not a hate crime. What shocked me though was my reaction. Unlike my son, I read the letter and was not angry at all. I was not shocked. I thought it was a perfect example of ableist hate and social superiority. There is a reason people with a disability live at or below the poverty line. There is a reason people with a disability are unemployed in great numbers. There is a reason people with a disability do not get an adequate education or advanced degrees. The history of disability is as shocking as it is depressing. The legacy of exclusion is ever present and still profoundly influences the lives of people such as myself and others.  Oppression and isolation are a constant.  Thus when I read the letter what struck me was that an ignorant bigot was brazen enough to poorly express what I suspect many others think and feel but do not articulate: disability is a tragedy, a fate worse than death. The presence of people with a disability is an unwanted reminder of what can go wrong with life and the human body. How else do you explain persistent civil rights violations?

I understand the law. Hate crimes are very narrowly defined. Multiple lawyers on various cable news outlets and many newspapers explained why the below letter, though offensive, is not a hate crime. Read the below: 

The Letter

To the lady living at this address:

I also live in this neighbourhood and have a problem!!!!  You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in a close proximity neighbourhood like this????  You selfishly put your kid outside everyday and let him be a nothing but a nuisance and a problem to everyone else with that noise polluting whaling he constantly makes!!!  That noise he makes when he is outside isDREADFUL!!!!!!!!!!! It scares the hell out of my normal children!!!!!!!! When you feel your idiot kid needs air, take him to our park you dope!!! We have a nature trail!!!  Let him run around those places and make noise!!!!!! Crying babies , music, and even barking dogs are normal sounds in a residential neighbourhood!!!!!! He is NOT!!!!!!!!!!!

He is a nuisance to everyone and will always be that way!!!!!  Who the hell is going to care for him??????  No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!! Personally they should take whatever non retarded body parts he possesses and donate it to science.  What the hell else good is he to anyone!!!  You had a retarded kid, deal with it...properly!!!!!!  What right do you have to do this to hard working people!!!!!!!  I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!!! GOD!!!!!!!

Do everyone in our community huge a [sic] favour and MOVE!!!!! VAMOSE!!!!! SCRAM!!!!! Move away and get out of this type of neighbourhood setting!!! Go live in a trailer or something with your wild kid!!! Nobody wants you living here and they don't have the guts to tell you!!!!!!

Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!


One pissed off mother!!!!!

I am one pissed off cripple thanks to my son. I am angry because this is not a hate crime. This is a classic example of how disability is always somehow different. Disability in terms of civil rights raises a level of complexity people are ill equipped to analyze. No powerful symbols associated with disability rights are known to the general public. There is no Martin Luther King of disability rights that touched the hearts and minds of the nation. Bra burning women put feminism on the national news. Equal work for equal pay and gender equality became part of the national conscious. We as a people accepted women have the right to control their reproduction.  We people with a disability need comparable singular moment in time. Those in disability rights are well aware  such events have taken place. But this has not resonated--not even the ADA. Most people have a hazy idea a law was passed a long time ago and it solved all the problems disabled people like me encounter.

I try to put myself in the mind set of a lawyer. The letter above, a lawyer would maintain, is directed at a single individual. It is not hate speech inciting violence against a group or class of people. The letter is not a burning cross on the lawn of a black family in an all white neighborhood. While the letter is vile, it does not meet the letter of the law as a hate crime is currently defined. Canadian authorities are investigating the matter and trying to determine if it falls under a different criminal code. I get this sort of legal thinking and do not like it. I think it is very reasonable to assume the letter was directed at one person with Autism. What the law fails to do is take the next step--specifically the letter could have been directed at any person with Autism or other disability. In my estimation we people with a disability are a distinct an insular minority group. One of the members of my class of people was subjected to a hateful act. The next step, violence, I think is a real concern had the letter not gone viral. I consider this letter to be a threat to me and all people with a disability. It is without question an effort to undermine the civil rights of all people with a disability. Few get this. My thinking may lack the rigor of the law, a separate language I do not speak, but it is at minimum the sign of a much larger problem. The sooner we address the problem, violations of the civil rights of people with a disability, the better off all people will be. 

Friday, August 23, 2013

An Approaching Problem Society is Not Prepared For or Thinking About

I am not a big stats guy. My father used to tell me "figures don't lie liars figure". But when it comes to demographics I find statistics can be helpful. I came across a statistic at that I think is critically important. 76% of the 4.3 people with developmental disabilities live at home. The family member that cares for such an individual is at least 60 years old. These care givers, most likely parents, were and remain warriors. These people cared for their child or children and rejected institutionalization either forced or coerced. They were a force that that led to 40 years of progressive legislation designed to empower all people with a disability.  These parents have worked hard to give their dependent children the best life humanly possible. They have done so with far too few resources and social support. In recent years these parents have been forced to fight for the meager assistance that exists because budgets have been slashed. As is often the case when budgets are cut the most vulnerable are impacted.

The generation of parents who have spent decades if not their entire lives caring for their dependent children and now dependent adults love them dearly--a fact utilitarian philosophers do not like to acknowledge in their quest to create a nomenclature to determine who is and is not a person. Scholars such as Peter Singer and Julian Savulescu just do not get disability at its most fundamental level. Nor does Dominic Wilkinson who recently published Death or Disability. In this text Wilkinson writes about "replacement" and substitute" children. Savulescu writes about post birth abortion and how parents have the moral obligation to conceive a child that is most likely to have a good quality of life. I find these views steeped in academic discourse deplorable. It may look good on paper, sound great at a conference such as the American Society of Bioethics and Humanities, but the reality is very different. Just ask or read the work of Eva Kittay or blogs such as Single Dad Disabled Daughter or Life with a Severely Disabled Child

This first generation of parents that have cared for severely disabled people are aging. They know that soon they will no longer be able to physically care for their child. Some of these people dependent upon parental care, many in fact, need 24 hour care. All parents of dependent children worry about their child. What is going to happen when they get too frail to care for their child? What will happen after they die? Multiple agencies that serve the needs of adults and children with profound disabilities are asking this question. Sadly, I feel no one who has not been directly touched by severe disability really cares. We as a society have replaced the horrors of large institutions and created more socially acceptable smaller institutions we call group homes. I do not mean to imply group homes are not good. Rather, any institutional setting is less than ideal when compared to a home environment.  We as a culture have failed to integrate people with cognitive and physical disabilities into the community. I bemoan this failure.

What gets me, what makes me furious, is the lack of acknowledgment both financial and social for the role these parents have played in the life of their children. These parents have literally saved the government hundreds of millions of dollars and provided the best care humanly possible. They have gotten very little in return from the government and society at large.  Frankly I do not get it. I do not get the fear and isolation associated with disability. I can assert myself and rail against the bias we call ableism. But what I experience pales in comparison to what people with a significant physical and cognitive disability encounter. The stares are not nice. The avoidance obvious and rude. When I see this I get upset. Go ahead, be rude to me. Be demeaning. I can take it. I can shove such bias back in another person's face if I want to. But please tell me what goes through the mind  of a person that is physically or mentally abusive to a person with a significant physical and cognitive disability? If a defenseless infant was abused all would be shocked and condemn the abuser. But what happens when a person with profound disabilities is abused or worse murdered?  The criminal or abuser is shown great mercy. Indeed, story after story of mercy killings are told. Robert Latimer who killed his daughter is no longer in prison. He is out and about speaking about his crime deemed a "compassionate homicide". He still believes he did nothing wrong. In 1993 the murder of Tracy Latimer was sensationalized in Canada and was used as a referendum to discuss euthanasia. In 2010 Latimer was released on parole. This leads me to ask if his daughter was "typical", that is not disabled, would he be free? No. Would he be sought out by the press? No. This sends a clear cultural message: the lives of disabled people are not valued, they are different somehow not fully human. Disability adds a level of complexity we are ill prepared to examine. The consequences of this can be deadly. Think Ugly Laws. Think Eugenics. Think involuntary sterilization. Think growth attenuation. Think assisted suicide. History is replete with lessons we choose to ignore.

Many scholars in bioethics and related health care fields are deeply concerned about aging baby boomers. All those forward looking are deeply concerned about aging boomers who will experience dementia. It is estimated that by 2050 there will be 13.8 million people with some form of Alzheimer's like dementia. The cost of caring for people with demential will likely exceed $1.1 trillion dollars and consume 70% of Medicare and Medicaid dollars. I have followed the concerns many have expressed about those who will experience dementia. I have yet to see any scholar outside those directly tied to caring for those with profound disabilities (think ARC) to express any interest the life of aging parents caring for a dependent adult. What will happen to this population of severely disabled and dependent people? What will happen to people with severe disabilities whose parents are too frail to care for them?  My greatest fear is that dual suicides will increase. Regardless, this is an issue that must be addressed.