And now for the 'wrongful-life' discussion
Lawrence Carter-Long writes,
Those still reeling from the Grey Lady placing the perspectives of real, live disabled people front and center in their coverage of the squirm-inducing trend to genetically test disabled folks out of existence (read NYT story here, and Mary Johnson's 11/21 blog entry about it here ) might do well to consider what may well be the most extreme, and perhaps least discussed, facet of the debate.
The disability-friendly perspectives featured in the NY Times article, while overdue, is not new thinking to most readers of Ragged Edge. But it is refreshing -- and just as striking -- to see our views in print.
We've come to expect "better dead than disabled" viewpoints presented primarily by non-crips in mainsteam coverage of disability issues, but what do we do, to paraphrase Pogo, if we turn to face the enemy and the face looking back is us?
On Nov. 11, Court TV's website detailed the story of Alexia Harriton, 24, a blind/deaf woman suing Dr. Paul Stephens for a "lifetime of suffering" in Australia's first "wrongful life" suit. Harriton claims her mother would have aborted her had she been aware of the potential birth defects associated with the rubella which was misdiagnosed by the doctor in the first trimester of her mothers pregnancy. Since the statute of limitations has expired for Harriton's parents, the suit is being brought in Alexia's name, seeking payment for the costs of the medical treatment she needs to survive.
Harriton's suit, initially filed in 2002, was denied by lower courts on the grounds the doctor did not breach his duty to the mother or the child. "The defendant has not caused the infant's injury but merely failed to prevent its birth," Justice Timothy Studdert wrote in a June 2002 judgment.
"Its" birth????
Troubling semantics aside, so-called "wrongful life" suits are hardly new. The New York Court of Appeals wrote in a 1986 decision rejecting a similar "wrongful life" claim, "Whether it is better never to have been born at all than to have been born with even gross deficiencies is a mystery more properly to be left to the philosophers and the theologians ... the implications of any such proposition are staggering."
If history is any indication, people with disabilities -- those who wish to live, that is -- might rightly dispute the relegation of the "wrongful life" issue to the clergy and philosophy crowd, still the potential for harm clearly goes far deeper than the court cases themselves.
The internalization of society's fear -- and perhaps, flat out hatred -- of disability may prove to be a much bigger stumbling block for disabled folks than the us vs. them, disabled vs. non-disabled paradigm we've fought this far. Neglecting the enemy within may prove to be our undoing -- for fighting that enemy may be our biggest battle yet.
Lawrence Carter-Long is Network Coordinator of the Disabilities Network of NYC and Contributing Editor of Satya Magazine.
There is a division in our community about being disabled. And the issues your article raises are important for us and our society to ponder. I don't view my disability as something to be ashamed of or proud of it's something that happened to me and has affected my life. However, I am not my disability; rather, it is part of who I am.
Perhaps being born with a disability affects how we feel about having a disability. I contracted polio when I was 3 and, therefore, remember being nondisabled and, therefore, have experienced losing something.
A friend who also had polio and I were discussing how we felt about being disabled years ago and she said something insightful. She said, "I don't know if my life would be better if I weren't disabled but it would be different." That's how I feel. I'm glad that I became an activist and worked for our equality; I'm honored to have been in the company of so many of the "best and brightest" in our community; I'm proud of being part of the effort to pass ADA; and I will always be committed to human rights issues partly/largely (I'm never quite sure) because of my exeperience as a person with a disability. BUT I won't regret if disabling conditions cease to exist. It makes me angry and sad that every day our ranks are added to by nature, war, accidents, deliberate actions of individuals, corporations, governments and so forth. Frankly, I find it ludicrous to attempt to sell this "happy horseshit" that we should be glad that we're disabled.
It seems that the American culture has an inordinate need to make everything that a rational individual would consider a negative into a positive, for example, fat is beautiful (not from where I sit), the Department of Defense (formerly Department of War), victims are not survivors, and so forth.
+-We vacinate against various diseases, malaria, polio, rubella,to name a few. Members of our community advocate for stem cell research to reverse paralysis, Parkinson's Disease vaccines, Alzheimer's Disease. Should this be stopped?
Every day thousands of developing human beings are destroyed by abortion. Why should a human being with a disability be spared?
Don't the "wrongful life" suits have at their basis a need for money to care for the individual with a disability?
I think there is diversity of opinion in our community about disability and I think your article will encourage much discussion.
Happy Thanksgiving.
Posted by: Denise Ann Mc Quade | November 24, 2005 09:46 AM
Excellent article and eye-opening for the non-disabled community.
I remember being 15 and running up and down the stairs when later that year, I was diagnosed with Muscular Dystrophy. I was screaming from the top of my lungs without being able to catch my breath, my mom knew it wasn't good news and being in the U.S. only five years without speaking a word of English, it was tough. The tears and the search for a magical cure were countless. I remember how society stared at my walk, the pssssst talk that suddenly stopped when I was approaching the neighbors, and the pity they felt for me and my family. I think it's tougher to deal with society accepting a human being with a disability rather the disability itself. Being surrounded in a negative atmosphere affects one's being, and I hope that society will change their outlook in life and see the positive rather than the negative. A disability is not something that a person asks for, it can happen to anyone.
Posted by: Angela D'Arezzo | November 28, 2005 08:49 PM
Our society is always debate about disability. What should or would do society with disabled people, special severe disabled people, who are burden for society. Why society has spent money to care for individual
who are not productive? However, in reality, many of those “not productive individuals” have enough strength to lead their productive lives and reach their goals for independence.
We are not happy to be disabled but we didn’t ask for it, we got it.
Because of that society attitude, person with disability needs to work or study twice as much than ordinary person to be the same as non-disabled.
At least this is how I felt all my life, because all my life I am disabled.
Of course being disabled affects how I feel about having a disability.
However, in spite of going thru institutions and different kind of discrimination in my life, I was able to achieve my purpose to be equal. I got education and work for many years in medical field and after as the computer programmer.
Having a disability shouldn’t change the quality of ours life. World wasn’t built for us. Disabled activists made many changes to improve our life, but we still have a long way in order to pursue our aspirations - to be treated as an equal citizen in terms with the public.
Overcome all obstacles on our long life journey is not easy and sometimes feels unbearable. Only when we fight together we able to achieve our dreams – be equal member of our society. Nevertheless, our battle didn’t finish yet!
We either let able-bodied define us or else we able define ourselves and tell the world who we are. Instead of being on objects of pity, we can be object of people’s admiration.
Luda Demikhovskaya
Posted by: Luda Demikhovskay | December 10, 2005 03:43 PM
I can empathise with someone wishing they'd never been born, although I haven't wished that. I have wished I'd never lived in the same house as my cousins or gone to school, because I recognise those as responsible for my misery. But my parents always viewed me as a worthwhile person who was being mistreated. I wonder, if they had viewed my life as a trajedy, would I have blamed my misery on being born, rather than on my abusive cousins, the screwy school system and the bullies? Might I have accepted society's message that I was worthless, if my parents believed that too? I think I might've. But what I would need would not be yet another person agreeing I should never have been born. Instead, the same thing they'd offer a normal young adult who wished they'd never been born. What I would need would be a person who shows me that it's possible to be happy, to love and respect myself, even in the face of others telling me I'm worthless. Fortunately, my parents fulfilled that role. But if they haven't, that role must be fulfilled by someone else, just as the role of feeding a child and protecting them from physical harm must be fulfilled by someone.
Ettina
Posted by: Ettina | December 20, 2005 05:02 PM
Ettina should read my chapter in Dinah Murray's edited text.... she's not alone, and I understand her well.... all the best, Ettina.... talk to me sometime....
Posted by: David N. Andrews BA-status, PgCertSpEd (pending) | December 20, 2005 08:53 PM
dunno if you caught the latest on this suit, but here is the court's decision to toss it out:
http://www.courttv.com/news/2006/0511/wrongful_life_ctv.html
Posted by: Ariella | May 15, 2006 10:21 AM