Wednesday, May 23, 2012

Complexities of Disability

The Complexities of Disability

Tomorrow is my day for 8 to 11 hours of immersion TASL.  My instructor has in E-mails to our deaf-blind listserv mentioned Christianity.  No problem.  But if she knew about my religious beliefs, would she still teach me?  I don't know.  One of the complexities of having a disability which forces one to depend on others is that you never know how much you can share:  of your personal history, religious or political belief, or what makes you laugh, with those you must depend upon.  This problem can come up just as much with an employee the person with a disability Pays, as with those who volunteer to help or those paid by social service agencies.  Why?  Because by simply Having a disability you are seen as the one Helped, and someone who helps is the Helper, regardless of whether or not You, the disabled person, are paying them or not.  So one may have a number of people in and out of one's life with whom one can share Nothing.

I am Very Fortunate to have a number of people with whom I can share most anything I want.  There are just a few with whom I must take care.

Another complexity is represented by the info. Below.

Tell Dr. Phil: Nothing About Us Without Us!
Please find below the final draft of the letter to the Dr. Phil Show, regarding the
segment that aired April 13, which presented the idea that parents should be able
to euthanize children with disabilities. The letter is directed to Dr. Phil himself
because he is his own producer. His sponsors will be copied. If your state, local,
or national organization would like to be added as a signatory to the letter, please
email Diane Coleman at
dcoleman@cdrnys.org
 by the close of business Friday, May 25, 2012.
Dr. Phil McGraw
Dr. Phil Show
5482 Wilshire Boulevard #1902
Los Angeles, CA 90036
Dear Dr. Phil:
The undersigned organizations are sending this letter in response to the April 13,
2012 segment of the Dr. Phil Show which presented the idea that parents should be
able to euthanize their children who have intellectual disabilities. This outrageous
proposal was portrayed in such an extremely unbalanced manner as to amount to a promotion
of such a deadly proposition.
The show centered on Annette Corriveau, who has two adult children who have a progressive
genetic condition called Sanfilippo syndrome. The show opened with a brief introduction
of Corriveau, followed by an interview of her conducted by one of the producers.
Over the course of the opening which took more than half of the segment, viewers
were shown and/or told the following:
Video of Corriveau's two children from typical childhood to recent pictures as adults
with disabilities;
Depiction of intellectual and physical disabilities developed as a result of the
condition;
Discussion of the changes in their appearance as they got older, implying that their
“not normal” appearance is tragic;
The fact that Corriveau institutionalized both children when they were young; and
Video of one of Corriveau’s visits: she reported visiting them every two months,
but doesn't touch them, because they don't react to her.
Nothing about other aspects of the lives of Corriveau’s adult children is presented,
such as whether or not they react to staff people they see every day. After the opening,
Dr. Phil, you engaged in dialogue with Corriveau, admitted not knowing what the two
adults would want but also said that you wouldn't want to live "like that."
The second guest in the segment was attorney Geoffrey Fieger, who defended Jack Kevorkian,
the assisted suicide and euthanasia advocate who claimed to have assisted the deaths
of about 130 people. According to the New England Journal of Medicine, over two-thirds
of Kevorkian’s victims were people with disabilities who were not terminally ill.
During this recent segment, Fieger argued that a health care guardian’s right to
consent to or refuse medical treatment should be extended to include active euthanasia
such as a lethal injection. He asserted that what Corriveau wants is perfectly reasonable
and merciful and that existing law against this is stupid.
The third 'guest' was a woman identified only by her first name - 'Ruthi' - who was
described as having four birth children and three step children, three of whom were
described as having “special needs.” Ruthi spoke from the audience, rather than on
stage like Ms. Corriveau. There were no videos of Ruthi’s children. She was appalled
at the idea of killing people with intellectual disabilities, but was given no more
than a minute to speak.
Finally, Dr. Phil, you asked for a show of hands from the audience – how many agree
that Corriveau should be able to “mercifully” kill her kids? It should be no surprise
that an audience who sat through such a one-sided presentation would vote about 90%
in favor of Corriveau and her desire to euthanize her two adult children.
Every show is followed online by a feature called "Dr. Phil Uncensored." The one
for the show "Deadly Consequences" features you and your staff expressing surprise
over the audience vote and congratulating yourselves that "all the arguments were
brought to the table" and that "we got both sides out". Nothing could be further
from the truth.
This program was a horrific assault on people with intellectual and developmental
disabilities. By conveying social acceptance and approval of active euthanasia of
individuals with disabilities by their family members, the segment threatens their
very lives. People with disabilities are reportedly twice as likely to be abused
as their nondisabled peers. It is grossly irresponsible that the Dr. Phil Show aired
a segment that further promotes any form of violence against a group already subject
to discrimination, ridicule and gross devaluation. The idea that people with disabilities
are “better off dead” is deeply offensive and cannot be tolerated.
The undersigned call upon you and the Dr. Phil Show to publicly apologize for the
“Deadly Consequences” segment and to give equal time to individuals with intellectual
disabilities and organizations advocating their equal rights. We also call upon the
Dr. Phil Show’s sponsors to become part of the solution by joining us in this demand.
Sincerely,
National Organizations
Autistic Self Advocacy Network
National Council on Independent Living (NCIL)
Not Dead Yet
The Arc of the United States
State and Local Organizations
The Arc of Illinois
Like NCIL on Facebook
Follow NCIL on Twitter
WWW.ncil.org
1710 Rhode Island Avenue Northwest
Fifth Floor | Washington, D.C., DC 20036 US

First, No One Wants to live with the disabilities they have, or very Few do.  But this has Nothing to do with whether people with disabilities Want to die.  I do Not.

Second, there is a problem sometimes deciding Who has an intellectual or developmental disability.  If I can't see you and can't understand your speech, it is Most likely that you will decide I am not Capable of communication; that I have an intellectual disability or a developmental delay.  Plenty of Dr.s Assumed this when my only disability was blindness, what will they decide if I must be accompanied by a TASL interpreter just to Go to the doctor?

Third, I am not wise enough to decide who should live and who should die and Neither is Dr. Phil.

Fourth, my own Personal belief as a survivor of extreme abuse is that if a parent or set of parents cannot love, or aren't willing to put in many years of hard work with an intellectually disabled child, oor one with serious developmental delays, they should have the Right to genetic counseling and abortion.  Many people in the Disability Rights Movement will disagree with me.  But personally, I think it is possible that being tortured is worse, or can be worse, than not being born.

Fifth, Every woman in this country Needs healthcare so she can Get genetic testing for the purpose of finding out if an embryo or first trimester fetus is carrying genes which will cause them to become severely disabled and to die young from those disabilities.

I looked up Sanfilippo Syndrome.  It is progressive, there is no cure, it effects children both physically and mentally, and the life expectancy of someone who has it is 20 to a Max of 50 years. 

Sixth, in other countries it is not uncommon to see amputees, people with Down's Syndrome, and all kinds of physical and mental disabilities.  I think the 90% vote for euthanasia referred to above has a Lot to do with how "neat and tidy" we like our citizens.

Well Get Ready America, Each time we send our young people to war we owe the wounded care for life.  No one would Dare, (and they Shouldn't) suggesting that intellectually disabled veterans should be killed.

So Why is it ok to Kill Adults with disabilities?  I know that in some countries of Western Europe (such as the Netherlands, at least in the past) it has been the practice to kill newborn babies with obvious disabilities, such as Down's Syndrome.  I couldn't do this.  And to kill an adult who either hasn't consented or cannot consent is murder.

I know I will die and have a will stating that I do Not want heroic measures taken if I cannot recover.  But, there are Also clauses in my will demanding that Many forms of communication (speech with my hearing aids in and their batteries working, Tactile ASL, and Braille) be tried Before such a decision is made.

And finally, I am not a patient person.  This and my upbringing are why I chose Not to marry or have children.  Having worked with blind people with brain injuries and also blind people with intellectual disabilities, I know I'm good at finding solutions to problems, but Lousy at having the patience to teach the solutions innumerable times to people who need to learn them.  I cannot judge this mother because I haven't lived her life.

What I can say is just because a person wouldn't want to live with a particular set of disabilities is NO reason for killing someone who Does live with them.  And I Do Know that some disability rights activists believe aborting an embryo or fetus which is known to have severe disabilities is Always wrong. They correctly point out that when Hitler was "engineering" his "super race" he murdered many hundreds of people with disabilities.  

While admitting that this is so, I  respectfully disagree.

I am sorry to say that I think this Dr. Phil segment reveals a bit about the True face of America.  We say we love our children, but some go to bed hungry and some should be killed as adults?  Wounded veterans have given all they can, yet we neglect them.  Anyone who is perceived as a drain on the economy is expendable?

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