Wednesday 11 July 2012

Malicious Whispers and Dangerous Trends

Occasionally, I will read something that another person has said or written and I think, "I just wrote about the same ideas last week!  Are some of us wired to the same computer?!"

The new summer edition of Abilities Magazine features an article I wrote about a trend that I began to observe over the past year - the title of the article is "The New Face of Eugenics: The Shocking New Trend Toward Devaluing People With Disabilities".  Here's a snippet:

In 2004, I recall telling a neighbour that my son Nicholas was very ill because of his severe disabilities and we had moved him to our hospital palliative care service.  “Oh”, she nodded sympathetically, “I remember when we had to put our dog down, it was so hard”.  I stopped sipping my coffee and blinked.  
I am reminded of that conversation because recently, I have observed a pernicious trend toward labeling some people not worthy of being considered human.  And it’s not just insensitive neighbours - it’s Princeton University bioethicists and animal rights activists Peter Singer and Geoff MacMahon.  They use IQ as a yardstick for human worth and argue that people with severe cognitive disabilities have roughly the same intrinsic value as a dog or a pig.  Now ethicists Francesca Minerva and Alberto Guilini have weighed in on the question of what kind of life constitutes personhood in a recent issue of The Journal of Medical Ethics.  A right to life, they say, is based on a person’s ability to perceive meaning in their own existence.  “Merely being human is not in itself a reason for ascribing someone a right to life.”  They use this argument to justify “after-birth abortion” (infanticide) in cases where, due to disability or even changed family economic circumstances, the killing of newborns is justified because infants have no appreciation of life or the loss of it.  Duke University philosopher Walter Sinnott-Armstrong makes an equally frightening case in another recent issue of the same journal.  He seeks to prove that killing in itself is not wrong. Rather, he maintains, the wrong is in the removal of abilities from another.  This line of reasoning allows him to justify using people with severe cognitive disabilities who require life-support technologies, but who are not brain dead, as organ donors.  Each of these arguments is frightening, but taken together, they pose a real threat to everyone, especially people with disabilities and those who love them. 
We should pay attention to these journal articles because ideas developed by philosophers and ethicists have a way of trickling down, over time, into the hearts and minds of everyday people.

Today, I happened on the blog of the esteemed disability activist and academic, Catherine Frazee.  Here is bit of what she wrote:

I’ve had many occasions to voice my outrage at Robert Latimer’s crime, and my horror at the wave of support that rose as his arrest and multiple trials turned through the cycles of front page news. Tracy is 19 years dead. Robert is again a free man, after 7 years in prison, and 2 ½ years on day parole.
I have no desire to rekindle the flame of this man’s still unrepentant posture that ending Tracy’s life was a blameless act. My quarrel here is not with a Saskatchewan farmer, or an Ontario mother, or any other horribly misguided parent seeking to end the life of a disabled child. My quarrel is with the clichés and platitudes that both foster and condone a very particular homicidal impulse. It is a preposterous notion that Tracy’s life did not conform to the law of nature that Robert somehow epitomizes.  The simplistic morality of pitting the “law of nature” against the “law of a nation” – the core assertion of Global’s Taking Mercy – must be exposed for what it is: a fundamentally eugenic rhetoric.
The Global Television special "Taking Mercy" to which Frazee refers aired in March of this year.  The show profiled Robert Latimer and others who defend the right of parents to murder on the basis of "compassionate euthanasia for the severely disabled."  
There are deeply concerning shifts taking place in society whereby a 'perfect storm' of threats are increasingly making it a dangerous time to be a person with a disability.....Global's programming uncritically provided a platform for perpetuating profoundly devaluing and damaging views without regard for (the) bigger picture or providing opportunity for people with disabilities and their families to provide a different perspective.
There is something happening in society when people who are watching the same puzzling picture begin to simultaneously and in isolation, figure it out.  The consensus amongst us, I believe, is that anyone who has a disability or loves someone with a disability better be on the lookout for these dangerous attitudes.  Because we can't afford not to - it's a question of life and death.  


Jeanette Booth said...

Donna, I'm saddened to say that it seems to me that the developmentally delayed are the most likely victims here. In my, albeit limited experience, individuals with physical disabilities tend to distance themsevles from those with cognitive disabilities; not to be seen in the same "category". Isolation from within and without.

The Caregivers' Living Room said...

Hi Jeanette, You are absolutely right! There is no doubt that the danger is for those with developmental disabilities as opposed to those with physical challenges. I talk a lot about this issue in my book and also in the article for Abilities. One neonatologist who spoke at a conference on medical ethics at McGill this year said "There is a feeling among my colleagues - an unspoken and probably unconscious bias - between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions." Thank you for your comment, it's absolutely the crux of the issue!

BLOOM - Parenting Kids With Disabilities said...

Jeanette is so right. It bothers me greatly when people with physical disabilities see themselves as somehow 'above' or different from those with intellectual disabilities - a hierarchy within the disability world. Thanks for sharing Donna!

Anonymous said...

I had the pleasure of meeting Donna's son, Nicholas, this past weekend. One of the issues we discussed was the "hierarchy" or "division" within the world of disability.

As an adult, reflecting upon my experiences, I can regrettably say, "The categorization between cognitive and physical disability, which emerges from the medical profession, has not only become cultural and personal in nature, but for more disturbing than one may think.

For example, there is simply not a divide between physical and intellectual disability, by those whom are physically impaired, but people with physical disabilities have created a division between themselves and and anyone else who is disabled.

The reasoning for this can be understood once one considers the desired goals of inclusion, acceptance, normalcy. Nonetheless, the end result remains what Jeanette Booth (above)has described as, "Isolation from within and without."

Neither Nicholas or I wish to interact or befriend someone solely on the basis of disability, but we have learned, "If one wishes to be accepted, they must accept others."

Matt Kamaratakis

Anonymous said...

How much of this is a result of the so-called service providers to people with intellectual disabilities, particularly in the past, and large charities?

By using pity fundraising approaches, by presenting themselves to the saviours to all, and by allowing within their institutions and sheltered workshops for people of all intellectual abilities to be herded together, irrespective of individual interests and particular strengths, they have done irreparable damage to opportunities for all people who experience disability.

Decades later, we are still paying for that damage. If you have never had someone speak to you in a slow, measured manner just in case you might not understand, at a conference where you are one of the keynote speakers, you can't imagine the challenge of dealing with the generalizations of which people are capable.

I've been involved with the disability movement since I was a child. I would say that there has been, in the last decade, a major effort to increase focus on cross-disability, including addressing issues specific to static phyical disabilities, chronic or progressive disabilities, chronic illnesses, mental health concerns, social disabilities, and intellectual disabilities. There is a huge risk for people with physical disabilities to do this, given the generalizations mentioned above. It doesn't matter how expensively I dress, how much education and professional experience I have, what worlds I move in. In any situation when I am meeting new people, particularly in fields where you would think they would know better, I will be confronted by someone who associates my crutches with intellectual challenges and who treats me as if I need elementary assistance.

When I say this, understand that I frequently find myself asking "who labelled you" when meeting people actually labelled as having an intellectual challenge. Normal human foibles like forgetting the name for something, or just a simple need for additional time to process information or the very common challenge of not understanding someone who speaks quickly and uses extremely complex language become the definition for the intellectual incapacity. If they are accepted as within the range of normal (eg forgetting things), or ameliorated, the disability can essentially disappear (as does a mobility impairment disappear when a ramp is provided, or a visual impairment when alternate media is made available, or a social disability when the correct environment is established).

A few years ago Jean Vanier proudly described, on a CBC program called Tapestry, how he stood up in front of a room full of Toronto-based CEOs and told them that "what the disabled need is love".

I just about threw the radio. No, what we need is the opportunity to compete for jobs and contracts fairly and objectively, without assumptions based on physical presentation. We need them to examine workplace policies to ensure that they do not create false barriers to workplace participation, and, instead, ensure that each employee will be able to do their work and be part of the workforce without impediment. We need them to look at ways of building society through fair labour practices and commitment to community economic development, rather than tearing it down by cutthroat approaches to staffing and offshore profit creation.

We do not need their "love". We can find that elsewhere.

But this is the nature of the discourse of advocates who come at it from a saviour model. Sheltered workshops may be less prevalent these days, and people with even significant disabilities are able to be fully participating members of communities. But attitudes such as those expressed by Mr. Vanier continue to damage the opportunities faced by all people with disabilities.

And it is this that leaves the door open for the Latimers of the world to be perceived as saints for their actions against those in their care.

The Caregivers' Living Room said...

Fascinating perspective - thank you for posting. I think the development of the language of disability is so important as evidenced by Jean Vanier, for example, using the word disability to refer only those with severe developmental disabilities (those served in L'Arche communities). Personally, I find the multiple identities concept of Amartya Sen really helpful in breaking down preconceptions and prejudice about disability that is based on ignorance. Thank you for your thoughtful comments!

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