Today the NY Times got a disability story right. In "For Disabled, Age 18 Brings Difficult Choices" Marc Santora wrote about the profound problems disabled people encounter when they age out of the system and become adults at 18. For 500,000 young adults with serious disabilities the options they have are limited at best. Many labeled "medically fragile" end up in nursing homes and a their life is profoundly compromised. For instance, two young disabled people featured in the story are currently living in a 700 bed institution for the elderly. The executive officer acknowledged that it was impossible to "create a milieu that is best for them".
The problems and options 18 year old disabled people have are severely limited--a fact highlighted in the article. This issue is not new to disability rights activists such as ADAPT and disability rights publications like Mouth. What is new is the number of young disabled people in this unenviable situation is growing. In spite of the actions of disability rights activists the fact is doctors, parents, and hospital administrators do not know what to do and up to 70% of young disabled adults can end up in a nursing home. The ignorance involved in deciding what to do highlights the divide between disability activists and the public at large leading the one doctor to state "It's something totally new, so part of it is just educating people about the situation". I could not agree more that further education is needed as is new legislation. Legislation and viable options beyond life in a nursing home are a must. But what sort of education and options will people be exposed to? The nursing home industry is powerful and well connected while disability rights groups despite a major commitment are virtually invisible. I wish I had a solution to the issues involved and my heart goes out to parents and disabled adults who are in an impossible situation that need not exist. What I can do is continue my support of disability rights groups like ADAPT and try to educate the public via this blog and my academic writing. This seems like a paltry contribution when I know other disabled people have a life that is compromised for truly bad reasons.
Wednesday, May 14, 2008
Monday, May 12, 2008
Disability and Language
Yesterday a long article appeared in the New York Times entitled "Taking a Chance on a Second Child". The article was written by Michael Winerip, a Pulitzer Prize wining writer. Mr. Winerip is a seasoned reporter, graduate of Harvard University and a gifted writer. Yet a day later I remain stunned and outraged by the language Winerip used. The article in question is about Jordana Holovach, her son Jacob who is severely disabled, and her decision to have a second "healthy" child.
The tone of Winerip's article is shocking. Each and every mention of disability is overwhelmingly negative. The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults. Among the snippets I found particularly appalling include the following:
In referring to Ms. Holovach's son: "And as much as she loves that boy and as hard as she's worked to make him whole...she felt snake bit"
Ms. Holovach's son is "confined to a wheelchair".
Ms. Holovach's son was responsible for her divorce: "Her first marriage ended in divorce under the strain" and "Jacob was a big reason".
Before Ms. Holovach's son was born "they were successful people" (note tense).
Ms. Holovach's second husband believes siblings of disabled people "felt burdened and cheated by having to care for a disabled sibling".
Other parents of children with a similar disability "let the child die quietly at home" or were "institutionalized".
Ms. Holovach's son represents "the curse and blessing of modern medicine".
Subtlety is absent as is any respect for the life of Ms. Holovach's son. Winerip describes the child as "not whole" and "confined to a wheelchair". He is also a "burden to his sibling" and responsible for the divorce of his parents. Until his birth, his parents "were successful people" meaning his birth was a failure and represented the "curse" modern medicine. If the parents had any sense they would send him to an institution or "let the child die quietly at home".
I am not parsing words nor am I taking quotes out context. The tortured language Winerip utilizes to describe disability is about as subtle as a burning cross erected outside the house of a black family. Disabled people are a burden at best. The lives of disabled people has no value when compared to "healthy people". In spite of these damning words Ms. Holovach has "made peace with Jacob as he is". Here is where I am stuck--why is the existence of disabled people such an affront to those who do not have a disability? What is so horrific about using a wheelchair? Why are disabled children segregated from their non disabled peers?
For readers of the New York Times and Winerip in particular let me clue you in on a few facts. My life has value as does the life of every disabled person in this country. Many of us are sentient and some people such as myself get angry when demeaned. The problem disabled people are forced to overcome has little to do with a cognitive or physical disability but rather social bigotry and ignorance. Disability is a social problem first and a logistical problem second. Logistical problems such as architectural barriers and inaccessible mass transportation systems would not exist if there was a social demand for the inclusion of disabled people. Instead, we get articles such as the one written by Winerip that perceive disability as some sort of perverse failure.
The New York Times routinely casts disability in a negative fashion (though I will acknowledge a small number of good articles are published). What I do not understand is why, that is why does the NY Times refuse to acknowledge what the vast majority of disabled people already know: disability rights are civil rights. If you do not believe me look it up--it has been the law for the last seventeen years. Yes, the Americans with Disability Act is indeed civil rights legislation in spite of the fact the Supreme Court has spent the last decade gutting into oblivion.
The tone of Winerip's article is shocking. Each and every mention of disability is overwhelmingly negative. The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults. Among the snippets I found particularly appalling include the following:
In referring to Ms. Holovach's son: "And as much as she loves that boy and as hard as she's worked to make him whole...she felt snake bit"
Ms. Holovach's son is "confined to a wheelchair".
Ms. Holovach's son was responsible for her divorce: "Her first marriage ended in divorce under the strain" and "Jacob was a big reason".
Before Ms. Holovach's son was born "they were successful people" (note tense).
Ms. Holovach's second husband believes siblings of disabled people "felt burdened and cheated by having to care for a disabled sibling".
Other parents of children with a similar disability "let the child die quietly at home" or were "institutionalized".
Ms. Holovach's son represents "the curse and blessing of modern medicine".
Subtlety is absent as is any respect for the life of Ms. Holovach's son. Winerip describes the child as "not whole" and "confined to a wheelchair". He is also a "burden to his sibling" and responsible for the divorce of his parents. Until his birth, his parents "were successful people" meaning his birth was a failure and represented the "curse" modern medicine. If the parents had any sense they would send him to an institution or "let the child die quietly at home".
I am not parsing words nor am I taking quotes out context. The tortured language Winerip utilizes to describe disability is about as subtle as a burning cross erected outside the house of a black family. Disabled people are a burden at best. The lives of disabled people has no value when compared to "healthy people". In spite of these damning words Ms. Holovach has "made peace with Jacob as he is". Here is where I am stuck--why is the existence of disabled people such an affront to those who do not have a disability? What is so horrific about using a wheelchair? Why are disabled children segregated from their non disabled peers?
For readers of the New York Times and Winerip in particular let me clue you in on a few facts. My life has value as does the life of every disabled person in this country. Many of us are sentient and some people such as myself get angry when demeaned. The problem disabled people are forced to overcome has little to do with a cognitive or physical disability but rather social bigotry and ignorance. Disability is a social problem first and a logistical problem second. Logistical problems such as architectural barriers and inaccessible mass transportation systems would not exist if there was a social demand for the inclusion of disabled people. Instead, we get articles such as the one written by Winerip that perceive disability as some sort of perverse failure.
The New York Times routinely casts disability in a negative fashion (though I will acknowledge a small number of good articles are published). What I do not understand is why, that is why does the NY Times refuse to acknowledge what the vast majority of disabled people already know: disability rights are civil rights. If you do not believe me look it up--it has been the law for the last seventeen years. Yes, the Americans with Disability Act is indeed civil rights legislation in spite of the fact the Supreme Court has spent the last decade gutting into oblivion.
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