In another case reminiscent of Ashley X, a mother seeks a hysterectomy for her 15 year old daughter who has CP, saying that it would be in the daughter's best interest, according to this BBC article.
The director of Scope, Andy Rickell, disagrees, stating that :
"It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests. This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights. Scope is concerned that doctors are supporting parents in this case. If this enforced sterilisation is approved it will have disturbing implications for young disabled girls across Britain."
In the article, Rickell urges the government to place extra legal safeguards for the protection of people with disabilities and do more to assist those who care for them, noting there should be "a clear framework put in place for dealing with ethical decisions of this complexity, which places the rights, and best interests, of disabled children at the heart of any decision."
The article goes on to state that :
"Simone Aspis, of the UK's Disabled People's Council, said the case was about Katie's human rights.
She said: "It is very clear to us that no operation should be undertaken if there is absolutely no clinical benefit to the person concerned.
"The operation should not be carried out under these circumstances. We are very aware there are other methods of medical intervention that can be done to help control Katie's pain.
"There's lots of non-disabled women who also experience discomfort in their periods.
"Doctors wouldn't even anticipate in recommending to a parent that their child should have their womb removed. Why should it be the case for this person simply because she is disabled?
"As far as we're concerned that is totally and utterly unacceptable."
via BBC.co.uk
Showing posts with label Ashley X. Show all posts
Showing posts with label Ashley X. Show all posts
Tuesday, October 9, 2007
Wednesday, July 18, 2007
"Escaping from Peter Pan's Prison"
hat tip on this BOTH to Title Varies Slightly and the Curt Jester
I linked directly to this article by Anne McDonald over at MercatorNet who writes about Ashley X. It's a must read.
She writes:
"Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St Nicholas Hospital in Melbourne, Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabelled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk.
Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."
Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. ...."
She questions Peter Singer's assessment of Ashley X and the assessment of children with like disabilities:
"When Singer wrote that, "Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognises them. She is expected to have a normal lifespan, but her mental condition will never improve," he has accepted the doctors' eyeball assessment of Ashley without asking the obvious questions.
What was their assessment based on? Has Ashley ever been offered a way of showing that she knows more than a 3-month-old baby? .....Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height." Via MercatorNet.com
She states it is unethical not to provide Ashley with a way to communicate and urges those around her to do so.
She writes:
"Only someone like me who has lain in a cot year after year hoping that someone would give her a chance can know the horror of being treated as if you were totally without conscious thought."
Words from Anne, assessed as having an IQ of less than 20 based on methods used before Anne was provided with a way to communicate.....
I linked directly to this article by Anne McDonald over at MercatorNet who writes about Ashley X. It's a must read.
She writes:
"Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St Nicholas Hospital in Melbourne, Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabelled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk.
Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."
Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. ...."
She questions Peter Singer's assessment of Ashley X and the assessment of children with like disabilities:
"When Singer wrote that, "Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognises them. She is expected to have a normal lifespan, but her mental condition will never improve," he has accepted the doctors' eyeball assessment of Ashley without asking the obvious questions.
What was their assessment based on? Has Ashley ever been offered a way of showing that she knows more than a 3-month-old baby? .....Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height." Via MercatorNet.com
She states it is unethical not to provide Ashley with a way to communicate and urges those around her to do so.
She writes:
"Only someone like me who has lain in a cot year after year hoping that someone would give her a chance can know the horror of being treated as if you were totally without conscious thought."
Words from Anne, assessed as having an IQ of less than 20 based on methods used before Anne was provided with a way to communicate.....
Wednesday, June 20, 2007
Petition to create AMA Disability Advisory Committee
Online petition - Creation of an AMA Disability Advisory Committee
"Numerous recent medical cases, such as the growth attenuation treatment given to Ashley, underscore this urgency. It is imperative that the disability rights perspective of people with disabilities is formally represented in the structure of the AMA so as to minimize the likelihood that similar mistakes, breaches in the law, will happen in the future.
Please sign it and circulate it as widely as you can. And as quickly as you can. The AMA will hold its annual meeting in Chicago on Thursday, and we would like to present the petition to them on this day.
Thank you in advance, for your help.
Linda Edwards
FRIDA"
"Numerous recent medical cases, such as the growth attenuation treatment given to Ashley, underscore this urgency. It is imperative that the disability rights perspective of people with disabilities is formally represented in the structure of the AMA so as to minimize the likelihood that similar mistakes, breaches in the law, will happen in the future.
Please sign it and circulate it as widely as you can. And as quickly as you can. The AMA will hold its annual meeting in Chicago on Thursday, and we would like to present the petition to them on this day.
Thank you in advance, for your help.
Linda Edwards
FRIDA"
Wednesday, May 9, 2007
Civil rights are indeed inconvenient: Ashley X parents respond on their website to WAPS report
The parents of Ashley X disagree on their website that it should be necessary to follow the court-mandated procedure of obtaining approval prior to sterilizing a child with a disability. In their statement they write that they consulted an attorney (whom they refer to only as a "disability lawyer"- not sure if that's true since that specialty doesn't exist in some states but since I don't have a name I can't check) and were told by the "disability lawyer" that the law didn't apply to their daughter. They state that " the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. "
This is an argument that dehumanizes those who are more "severely disabled". Drawing lines like this is the dangerous part of this whole debate - if you take this approach (shudder) at what point does a person with a disability lose his/her civil rights? Unless we're going to argue that civil rights are "silly" and frivolous in general, that's a question that unversally needs to be answered as follows- all human beings are deserving of the same protection and equality. Basing an "entitlement" to protection by somehow reaching a certain standard of functioning negates the entire point of protecting people with disabilities in the first place.
They then state that : "Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s."
Yikes! This is like saying that having to follow any procedure to protect children with disabiltiies or any other vulnerable group is a "burden" (interesting choice of words) and is outweighed by considerations of convenience. The parents of Ashley X and the hospital board did indeed circumvent the law, which the hospital board has admitted and intends to rectify.
The parents of Ashley , on the other hand, seem to see nothing wrong with what they did even in the face of a finding that the procedure was done illegally. In fact they call it a burden and an "undue obstacle" to follow the law. The parents' web site is highly visible as a result of the "debate" (which we now find out was over an illegal procedure) and the parents are still not willing to acknowledge that we live in a society that recognizes the constitutional and common law rights of people with disabilities - including court mandated procedures that were violated with Ashley.
In any case, since their statement has been put out there in the public, it will draw responses like mine. The choice to issue this statement in the face of a finding by the Washington Advocacy and Protection report that it was done illegally, in my opinion, is a continuation of a campaign to promote the "Ashley X treatment" without court approval. Basically the parents should remove the parts of their statement from their web site that encourage illegal behavior - performing procedures by bypassing the laws already in place - by arguing that it is a burden and undue obstacle And we need to consider whether the laws in place are sufficient to protect the rights of disabled people in the face of this kind of response.
We also need to separate out the excuses people use to try to take away the civil rights of disabled people. It is certainly true that parents of children with disabiltiies are a sympathetic group- and rightly so. They are good, well meaning people. However when they break the law or speak out publicly in ways that encourage breaking the law, it is necessary to set aside our sympathy and see their behavior for what it is.
Many who defend the parents' position in this case refuse to see that Ashley X's parents publicized this treatment on a web site, suggesting it would work for other families. Now that a finding has been made that it was done illegally, not only has no deterrent been suggested - such as sanctioning the parties involved, but the parents continue to make arguments that would put the civil rights of disabled children at the mercy of the convenience of everyone else. They criticize the very laws they broke making the same arguments that caused them to break the laws in the first place.
To which I say: Civil rights are indeed inconvenient - to those who seek to violate them.
[A link is provided at the top to the website of Ashley X's parents.}
This is an argument that dehumanizes those who are more "severely disabled". Drawing lines like this is the dangerous part of this whole debate - if you take this approach (shudder) at what point does a person with a disability lose his/her civil rights? Unless we're going to argue that civil rights are "silly" and frivolous in general, that's a question that unversally needs to be answered as follows- all human beings are deserving of the same protection and equality. Basing an "entitlement" to protection by somehow reaching a certain standard of functioning negates the entire point of protecting people with disabilities in the first place.
They then state that : "Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s."
Yikes! This is like saying that having to follow any procedure to protect children with disabiltiies or any other vulnerable group is a "burden" (interesting choice of words) and is outweighed by considerations of convenience. The parents of Ashley X and the hospital board did indeed circumvent the law, which the hospital board has admitted and intends to rectify.
The parents of Ashley , on the other hand, seem to see nothing wrong with what they did even in the face of a finding that the procedure was done illegally. In fact they call it a burden and an "undue obstacle" to follow the law. The parents' web site is highly visible as a result of the "debate" (which we now find out was over an illegal procedure) and the parents are still not willing to acknowledge that we live in a society that recognizes the constitutional and common law rights of people with disabilities - including court mandated procedures that were violated with Ashley.
In any case, since their statement has been put out there in the public, it will draw responses like mine. The choice to issue this statement in the face of a finding by the Washington Advocacy and Protection report that it was done illegally, in my opinion, is a continuation of a campaign to promote the "Ashley X treatment" without court approval. Basically the parents should remove the parts of their statement from their web site that encourage illegal behavior - performing procedures by bypassing the laws already in place - by arguing that it is a burden and undue obstacle And we need to consider whether the laws in place are sufficient to protect the rights of disabled people in the face of this kind of response.
We also need to separate out the excuses people use to try to take away the civil rights of disabled people. It is certainly true that parents of children with disabiltiies are a sympathetic group- and rightly so. They are good, well meaning people. However when they break the law or speak out publicly in ways that encourage breaking the law, it is necessary to set aside our sympathy and see their behavior for what it is.
Many who defend the parents' position in this case refuse to see that Ashley X's parents publicized this treatment on a web site, suggesting it would work for other families. Now that a finding has been made that it was done illegally, not only has no deterrent been suggested - such as sanctioning the parties involved, but the parents continue to make arguments that would put the civil rights of disabled children at the mercy of the convenience of everyone else. They criticize the very laws they broke making the same arguments that caused them to break the laws in the first place.
To which I say: Civil rights are indeed inconvenient - to those who seek to violate them.
[A link is provided at the top to the website of Ashley X's parents.}
Tuesday, May 8, 2007
Ashley X procedure done without required court order by hospital
Washington Protection & Advocacy has issued the following statement as a result of an investigation into the matter. Based on the findings of their report, a five year agreement has been reached:
"Seattle Children's Hospital acknowledged the following in our five (5) year, enforceable agreement:
"Children’s has received and reviewed the WPAS report on Ashley and the treatment she received. In general, Children’s accepts the WPAS report. Specifically, Children’s agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."
This is a significant step toward protecting children with disabilties in the future against treatments without approval in violation of their constitutional and common law rights.
For further information including the complete report, newspaper articles and a list of blog posts on the Ashley X case , click above.
"Seattle Children's Hospital acknowledged the following in our five (5) year, enforceable agreement:
"Children’s has received and reviewed the WPAS report on Ashley and the treatment she received. In general, Children’s accepts the WPAS report. Specifically, Children’s agrees with the finding in the report that Ashley’s sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights. Children’s deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."
This is a significant step toward protecting children with disabilties in the future against treatments without approval in violation of their constitutional and common law rights.
For further information including the complete report, newspaper articles and a list of blog posts on the Ashley X case , click above.
Wednesday, March 14, 2007
Rationalizing the disparate treatment of children with disabilities
As a disability advocate, a quadriplegic and the aunt of a child with CP, I am outraged at how people openly rationalize the disparate treatment of children with disabilities from their able bodied peers.
Many of the arguments used make the basic assumption that a child with a disability is the "property" of his or her parents. This type of attitude in Victorian times led to many forms of child abuse, including child labor. Societies have spent decades passing laws to protect children and improve their status so that no child is treated like chattel.
It is certainly true that parents enjoy certain "rights" over their children. In order to raise them properly, they must discipline and educate their progeny. This is done by exercising decisions about their education, nutrition, clothing, and health care.
But even within these guidelines, our society provides for agencies that overlook the health and well being of children. When children are abused or neglected, we remove them from their parents' care and place them with relatives or in foster care. Meanwhile, the State works with the parents to assist them in correcting the behavior or circumstances, if possible, which caused the removal. In these cases, the best interest of the child is the predominant standard.
At least, for able bodied children. But it appears the same is not true when we are dealing with a child with a disability. If parents had sought out the medical procedures and treatment given to Ashley X on an able bodied child, the child would have been removed from her parents. Society would have been outraged.
But when a disabled child like Ashley is involved, the public reaction is divided. Those who agree that it is a parent's right to select this type of "treatment" for a child with a disability rationalize it by arguing that such a child has no autonomy or is not worthy of the same standard of dignity or humanity which would be applied to an able bodied child.
These arguments are dangerous. They apply a property standard to a human being . Every time we posit that a child with a disability can not understand the concept of dignity and therefore is not worthy of it, those words serve to try to turn that child into a piece of property belonging to his or her parent - or others. When we say such a child is less human or lacks autonomy, we strip away the child's equal value and worth as a human being.
Many of the arguments used make the basic assumption that a child with a disability is the "property" of his or her parents. This type of attitude in Victorian times led to many forms of child abuse, including child labor. Societies have spent decades passing laws to protect children and improve their status so that no child is treated like chattel.
It is certainly true that parents enjoy certain "rights" over their children. In order to raise them properly, they must discipline and educate their progeny. This is done by exercising decisions about their education, nutrition, clothing, and health care.
But even within these guidelines, our society provides for agencies that overlook the health and well being of children. When children are abused or neglected, we remove them from their parents' care and place them with relatives or in foster care. Meanwhile, the State works with the parents to assist them in correcting the behavior or circumstances, if possible, which caused the removal. In these cases, the best interest of the child is the predominant standard.
At least, for able bodied children. But it appears the same is not true when we are dealing with a child with a disability. If parents had sought out the medical procedures and treatment given to Ashley X on an able bodied child, the child would have been removed from her parents. Society would have been outraged.
But when a disabled child like Ashley is involved, the public reaction is divided. Those who agree that it is a parent's right to select this type of "treatment" for a child with a disability rationalize it by arguing that such a child has no autonomy or is not worthy of the same standard of dignity or humanity which would be applied to an able bodied child.
These arguments are dangerous. They apply a property standard to a human being . Every time we posit that a child with a disability can not understand the concept of dignity and therefore is not worthy of it, those words serve to try to turn that child into a piece of property belonging to his or her parent - or others. When we say such a child is less human or lacks autonomy, we strip away the child's equal value and worth as a human being.
Ashley X revisited...
over at a post in the American Prospect Online Edition. The author discusses a change of mind after considering the arguments of disabilty rights activitists - then reconsidering them after more reading. The result? A heading entitled "Where health funding meets disability rights..."
Check it out - the comments are pouring in...
Check it out - the comments are pouring in...
Friday, March 2, 2007
Exceptional Parent organization speaks out against Ashley Treatment
Their position statement, in part, states:
"The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like “Ashley’s Treatment,” mental illness based assisted suicide and infant euthanasia is appalling."
Via SDS list serv
"The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like “Ashley’s Treatment,” mental illness based assisted suicide and infant euthanasia is appalling."
Via SDS list serv
Friday, February 23, 2007
Martin's Answer to the Ashley Treatment
A blog begun by a parent of a child with a disability . It reads:
"Our intent is show that extreme measures are not an option. Our child's name is Martin and he has disabilities as severe, if not more so, than Ashley. Martin lives at home, is growing to a normal size and stature, and he will continue to do so without medical intervention to stunt his growth."
and describes the meeting with the AMA this week.
"Our intent is show that extreme measures are not an option. Our child's name is Martin and he has disabilities as severe, if not more so, than Ashley. Martin lives at home, is growing to a normal size and stature, and he will continue to do so without medical intervention to stunt his growth."
and describes the meeting with the AMA this week.
Ashley Treatment- John Hockenberry weighs in on his blog...
in a post -Ashley X: straight on till mourning.
Thursday, February 15, 2007
Largest Minority.org will be broadcasting a show on Ashley X
....you can listen to it live on wbai at 11 a.m. There is a link to wbai from the link above. The show will also be in the archives at Largest Minority after its broadcast.
Via SDS listserv
Via SDS listserv
Friday, February 9, 2007
Monday, February 5, 2007
A Statement of Solidarity for the Dignity of People With Disabilities: A Petition in reaction to the Ashley Treatment
click above to check out and sign a petition dealing with the Ashley Treatment.
It begins:
"We, the undersigned individuals and organizations, are in agreement that the growth attenuation therapy administered to the little girl known as Ashley is an affront to her human dignity, and to that of all people with disabilities. Despite the good intentions of both her parents and the doctors who have treated her in accordance with their wishes, we condemn these medical procedures and declare that it is never ethically acceptable to medically alter a human being for the benefit of caregivers. Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them and of all people with similar disabilities...."
and it ends with:
" People with disabilities are not the problem. The real issue is the lack of support, care, and help from our social, medical, and civil establishments for Ashley's parents and for all those who care for people with disabilities. Yes, it is expensive. But the alternative is morally and ethically unacceptable in a society that honors life and human dignity. We call on our fellow citizens, our government, and our medical establishment to treat people with disabilities as people, not as problems. We stand together and demand that doctors and social service agencies never again use medicine to strip someone of their humanity through medical procedures like the "Ashley Treatment," and call on our legislators to pass laws that codify the right of people with disabilities to their integrity as people. "
Go over and check out the whole thing.
It begins:
"We, the undersigned individuals and organizations, are in agreement that the growth attenuation therapy administered to the little girl known as Ashley is an affront to her human dignity, and to that of all people with disabilities. Despite the good intentions of both her parents and the doctors who have treated her in accordance with their wishes, we condemn these medical procedures and declare that it is never ethically acceptable to medically alter a human being for the benefit of caregivers. Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them and of all people with similar disabilities...."
and it ends with:
" People with disabilities are not the problem. The real issue is the lack of support, care, and help from our social, medical, and civil establishments for Ashley's parents and for all those who care for people with disabilities. Yes, it is expensive. But the alternative is morally and ethically unacceptable in a society that honors life and human dignity. We call on our fellow citizens, our government, and our medical establishment to treat people with disabilities as people, not as problems. We stand together and demand that doctors and social service agencies never again use medicine to strip someone of their humanity through medical procedures like the "Ashley Treatment," and call on our legislators to pass laws that codify the right of people with disabilities to their integrity as people. "
Go over and check out the whole thing.
Friday, January 12, 2007
Larry King: Joni Tada appears...
..to discuss the need to treat people with disabilities with respect - regarding the Ashley X case. She brought up the issue of cost- saving - and how that is used to justify treatments that are repugnant to many of us in the disability community.
Haven't heard about Joni? You can read about her ministry here.
Haven't heard about Joni? You can read about her ministry here.
Wednesday, January 10, 2007
Monday, January 8, 2007
A Mother and Father's Betrayal
David, over at Growing up with a Disability, blogs about the Ashley story - with a very powerful post about his relationship with his parents. He also links to a number of other bloggers who have posted on this. Well worth reading.
Friday, January 5, 2007
Our viewpoint in mainstream media on panels
Sometimes I think PWD should be the ones with their faces on milk cartons, listed as missing.
Why? Because we have been, for the most part, faceless in the mainstream media.
I watch news shows quite a bit. I used to have them on all day before I received my voice activated TV remote , mostly because I couldn't change the channel once it was set. So during those many many hours of watching , I noticed something.
When a hot topic comes up, many of their show hosts bring in a panel consisting of various viewpoints. There will be, for example, a Republican and a Democrat. If it is an issue involving school violence and video games, for example, there will be two psychologists, one on each side of the issue. There may be representatives of advocacy group or members of a community .
But one thing I noticed on several specific topics pertaining to those of us with disabilities is that this practice was not followed. For example, when the court case ruling that currency is inaccessible to the blind was discussed, there was no representative from the disabled community. I saw no advocate.
When the Ashley case was discussed yesterday, there was a disabled advocate asked to speak on the Nancy Grace show. (Click above for transcript).
Why, for the most part, are our faces missing from the screen? The media have not accepted, nor have they been pressured to accept the fact that the disabled have our own culture and identity - and although there are differing viewpoints within that culture, we have strong and strident voices among us.
Let us remember that in cases dealing with issues where people with disabilities are involved who cannot speak for themselves, such as the situation with Ashley, those of us who can speak up need to. When we aren't invited onto mainstream media, then let us consider what we need to do to be heard through other media sources.
Our opinions matter. Our culture is as legitimate as any other.
Why? Because we have been, for the most part, faceless in the mainstream media.
I watch news shows quite a bit. I used to have them on all day before I received my voice activated TV remote , mostly because I couldn't change the channel once it was set. So during those many many hours of watching , I noticed something.
When a hot topic comes up, many of their show hosts bring in a panel consisting of various viewpoints. There will be, for example, a Republican and a Democrat. If it is an issue involving school violence and video games, for example, there will be two psychologists, one on each side of the issue. There may be representatives of advocacy group or members of a community .
But one thing I noticed on several specific topics pertaining to those of us with disabilities is that this practice was not followed. For example, when the court case ruling that currency is inaccessible to the blind was discussed, there was no representative from the disabled community. I saw no advocate.
When the Ashley case was discussed yesterday, there was a disabled advocate asked to speak on the Nancy Grace show. (Click above for transcript).
Why, for the most part, are our faces missing from the screen? The media have not accepted, nor have they been pressured to accept the fact that the disabled have our own culture and identity - and although there are differing viewpoints within that culture, we have strong and strident voices among us.
Let us remember that in cases dealing with issues where people with disabilities are involved who cannot speak for themselves, such as the situation with Ashley, those of us who can speak up need to. When we aren't invited onto mainstream media, then let us consider what we need to do to be heard through other media sources.
Our opinions matter. Our culture is as legitimate as any other.
Thursday, January 4, 2007
This just in...
CNN is doing a poll on the Ashley issue -however their "take " on this is all wrong.
The question they ask is who should have the say in medical decisions for the disabled - caregiver or ethicist?
Probably because the news stations (the ones I saw anyway) had all able bodied guests commenting on this issue rather than bringing in PWD (it IS a disability issue) it never occurred to anyone that Ashley should have her OWN advocate.
The question they ask is who should have the say in medical decisions for the disabled - caregiver or ethicist?
Probably because the news stations (the ones I saw anyway) had all able bodied guests commenting on this issue rather than bringing in PWD (it IS a disability issue) it never occurred to anyone that Ashley should have her OWN advocate.
And check out this misinformed headline
From the Independent:
"Brain- damaged girl is frozen in time by parents to keep her alive"
Now these measures are being justified as life saving. Quite to the contrary, Ashley's disability does not limit her life expectancy.
"Brain- damaged girl is frozen in time by parents to keep her alive"
Now these measures are being justified as life saving. Quite to the contrary, Ashley's disability does not limit her life expectancy.
BBC article on 9 year old Ashley
I shudder as I read this quote :
""The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
So where does this end? Do we maim all kids with cognitive limitations by keeping them frozen in childhood?
Since when is it OK to say that women with cognitive disabilities are "grotesque'?
""The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
So where does this end? Do we maim all kids with cognitive limitations by keeping them frozen in childhood?
Since when is it OK to say that women with cognitive disabilities are "grotesque'?
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