Mother wins right to end disabled daughter's life

[loyalsister]

THIS is what those of us in the disability community are worried about when people are sympathetic to parents who murder their disabled children, and blanket statements about the ethics of others who decide to give birth to children with disabilities.

The ruling sets a precedent as it is the first time a child breathing on their own, not on life support and not suffering from a terminal illness, has been allowed to die.

In her summing up the judge said Charlotte's love for her daughter is apparent and she had "great admiration" for her devotion to Nancy.
"The last day was the hardest of my life. It was absolutely horrifying. I miss my beautiful girl every day and although I know it was the right thing to do, I will never forgive myself. It shouldn't have to be a mother's decision to end their child's life, doctors should be able to take that away from you."

– CHARLOTTE FITZMAURICE

http://www.itv.com/news/2014-10-26/mother-wins-right-to-end-disabled-daughters-life/

I find it troubling that it is all about the mother. No one likes to see anyone, especially someone we love experience pain. But, the questions about what kind of pain justifies euthanasia, and how we evaluate the severity should not be answered by a person who has a vested interest in their death or survival. I think that leaving it up to a Dr. presents an even more troubling slippery slope.

This is just another reflection of how entrenched the stigmas and stereotypes regarding people with disabilities are.

[phylny]

1. If it is true that her daughter was "screaming in agony"

and nothing could be done to help her, then I cannot fault the parent. Reading only this article, it appears this mother loved her child so much that she didn't want to see her suffer unnecessarily.

I am a speech-language pathologist, and I work with many children with various disabilities, and I know that every parent whose child I work with would be devastated to have to make a decision like this, and every one of them would grieve the loss of their child, but I think they, too, would not want their child to suffer with no relief.

I really don't see in the article where it was all about the mother. Rather, it seems it was about the mother's love for her child. Who SHOULD make such a decision, except for the person or persons who love the child the best?

[Erich Bloodaxe BSN]

4. I think taking the link and reading the original story

left me with a far different impression than the OP's summation.

I'm going to leave it at that, as I don't see any upside in any debate here.

[Electric Monk]

9. +1

[uppityperson]

29. +++++

[Aerows]

66. Well said.

I see no upside to a debate here.

[marym625]

5. I agree

I would assume that doctors testified about the agony of the child. A child who can't speak for herself but can be in such horrible, excruciating pain that she knows nothing else.

I understand the fear of euthanasia when it isn't the decision of the person themselves. But if someone is unable to speak for themselves, should the person just suffer endlessly? Suffer day in and day out?

I can't fathom what those parents are going through. But from the little I know, I believe that the right decision was made.

Let us not forget that, although it was the parents that were granted the right to end the life, it wasn't done in a vacuum

[loyalsister]

8. "loved her child so much that she didn't want to see her suffer unnecessarily"

This is the same logic that anti-vaxers and the parents\caretakers who have murdered their disabled children use. I think it's questionable whether not wanting want to see her suffer refers to the daughters pain or her own.

"I loved my daughter, spouse, parent so much I had to kill them" is not a novel sentiment and I believe is too easily understood as reasonable if the person has a disability or health issue. This should worry anyone who has a family and a history of disability or health problems.

[phylny]

11. I understand, but I don't fault this parent because others are

disingenuous. I work with so many parents who have severely disabled children who would go to the ends of the earth for their child, and I see so much love and devotion, that I choose to view this mother through those eyes.

[loyalsister]

14. Our experiences with such things define our opinions

Having seen public policy enacted that eliminated ambulatory oxygen from medicaid coverage leads me to be very sensitive to such things. Oxygen was restored after a court challenge, but not the podiatric care that would have saved the lives of two people I knew who had Diabetes.

I know that parents are in a terrible position, and I don't want to judge this woman. But the potential unintended consequences for others is something I think we should not forget.

[jwirr]

40. I knew a young woman who was murdered by her sister who had terminal cancer because there would

be no one to take care of her when said sister was gone. She used that rational also.

[Beaverhausen]

44. Care to elaborate?

The sister was disabled? How did the sister murder her?

[jwirr]

48. The younger sister was developmentally disable and had lived with her older sister most of her life.

The older sister shot her in the head. By the way they loved each other as well.

[demigoddess]

52. I have a handicapped daughter 42 years old

who spends a lot of time hitting herself and screaming because she is non verbal and cannot tell us if it hurts some place. We just went through two weeks of this. Doctors usually just cannot help. She would have to be put under general anesthesia to just run tests. Most kids like her are fed by tubes and I worry she might lose her feeding skills which took years to teach her because I am sure she would rip out a feeding tube or spend her life trying to. She did it at 3 months old. She may be retarded but she is determined to run things, do what she wants to do, there is no bargaining with her because she is mentally less than one year old. When she was 13 or so she would crawl across the room in order to aim her eyeball at the corner of the coffee table. This has nothing to do with anti-vaxxers!!! Walk a mile in our shoes, then talk!!!!!!!!!!!!!!!!!!!!!!

[Boudica the Lyoness]

61. I'm so sorry you, and your daughter, are going through all this.

I cannot begin to imagine what it's like.

[demigoddess]

64. I'm just telling so people

do not buy into this idea that severely handicapped people are just happy go lucky all the time. I forgot to mention that she has been in pain almost all of her life because of her backbone and joints. We give her three medicines a day to keep her from hitting herself but they are like water most times. Parents can be doing everything they can and still come up against a wall and be unable to help their child. My daughter mentally a year old, how can she be expected to be superhuman and suffer what an adult would find unsupportable?

[LordGlenconner]

56. You keep throwing the word "murder" around.

I don't think that word means what you think it means.

[Marrah_G]

58. You are pretty judgemental- this isn't about just some disabilty

I seriously hope that you never, ever have to be in this parents shoes. I mean that. it is a living hell.

[JimDandy]

2. This was in London and they murdered her by withholding food and water.

What an agonizing way for a child to die.

[phylny]

6. I wonder if it was more agonizing than the pain she was

already in, or less? I'm not trying to be a smart ass, I just wonder. If she were euthanized with drugs, then they'd be "murdering" her that way?

I can only imagine that this was just as horrifying an ordeal for the parent. It didn't sound like the mom was looking for a quick way to rid herself of her daughter after 12 years of care where she was kept alive through enteral nutrition.

I know that for me, before my last operation I filled out paperwork that I didn't want extreme measures, including enteral nutrition, if it looked as though I wouldn't recover. I know in this case, the child never had the cognition to choose such a thing, but for me, it wouldn't be a way to live. That's just me, though.

[Control-Z]

7. This is my concern.

Clearly there are more humane ways of ending ones life.

A side note - my ex husband, against his and the family's wishes, was left in a vegetative state until he died of other causes BECAUSE they had put in a feeding tube at the time of his brain trauma and unsuccessful surgery. Removing the tube was considered unethical.

[mucifer]

13. In hospice it is common to stop tube feedings and it is considered ethical.

[loyalsister]

16. And is that a decision made by the patient

Either at the time or in advance via advanced directives?

[NYC_SKP]

17. When the patient is a minor, it may be that the parents have the power to make such decisions.

I would imagine that it varies by state.

I was often in a situation to make life ending calls for my aging parents.

I didn't make any calls to hasten their deaths but in the case of my stepfather maybe I should have.

It's not easy, and it's not the same as religious zealotry or the anti-vaccers.

[loyalsister]

20. And hospice is different from this situation as well

The mentality of loving a child too much to watch them suffer is rational to a point. But, the fact that such sentiments drive decisions to vaccinate, seek or withhold treatment, to let loose frustrations, and even policy is worth remembering even when we agree.

[Control-Z]

26. He was placed in a nursing home.

Off a ventilater. Tube fed. Until he died from untreated cancer. An ethics board said no to removing the tube. I guess they figured he'd die soon enough.

The pain my daughter suffered for those years. Sadly, it was a relief when he did finally pass.

[jwirr]

41. I have also seen that - a living will is a good thing to have. Something everyone regardless of age

should have. We took my brother off of life supports because we knew he would not want to live that way either. He could no longer make the decision - the entire family made it for him. I see nothing wrong with that.

But I am very afraid of this decision - I do understand about the pain. And will say that IF it was indeed unmanageable then I also understand about the decision. What I am most afraid of is the door that has been opened. There is a lot of room for abuse.

[mucifer]

15. The baby might have suffered less when feedings were withdrawn

The article doesn't say.

We don't know how the final days happened. The article is unclear.

It says the baby was "screaming in agony" from an unsuccessful operation.

There are lots of unanswered questions in this article.

I hope that a pediatric hospice doctor was involved who was able to medicate the child appropriately for comfort.

[DeadLetterOffice]

24. Not a baby.

She was cared for and loved for 12 years before a surgical procedure left her with significant and constant pain that became non-responsive to pain medication.

[DeadLetterOffice]

23. It is not, in fact, an agonizing way to die.

I worked for Hospice for many years. Dehydration is in fact not at all a bad way to die, and one I would pick if I had a choice.
I'm sorry, I really should do the research and find you the links, but the truth is my head is pounding and I just don't have it in me right now.

But please don't worry that this child suffered horribly from not getting fluids.

[jwirr]

3. By what means was she euthanized? Withdrawal of food? Just read the post above me. I hate reading

this. Euthanasia is one thing. That is usually done by someone who can make a decision about themselves. This is making a decision about someone else who has had no say in the outcome. That bothers me.

That is all I am going to say because my emotions are all tied up in this situation. I have a DNR for my daughter but I will not go any further than that. I have basically made the rule that I will not do anything to her that I would not have written in my own living will.

[loyalsister]

10. Euthanasia might not have been the correct word

But, an action was taken that would inevitably end her life. So it seems to me to be an appropriate understanding of the practical effect of this ruling. I see that as very different from not taking action, as with a DNR.

[jwirr]

39. Yes, so do I. And a very dangerous precident because this parent seems to really have loved her

child. But there are parents who totally resent their children regardless of the degree of health that child has. What is to stop them from using this ruling to rid themselves of a child.

I cannot help but point out that many thousands of disabled persons died at the hands of monsters in the concentration camps with the approval of the government some years ago.

I have always felt somewhat sympathetic toward persons who want euthanasia to be legal for themselves. In fact I was the one to ask the doctors to increase the dosage of pain meds for my dad when he had cancer. And I agreed that my brother should be taken off of life supports. But in my dads case he was dying - he would not have continued to live even if we had not increased to meds. My brother already had a fever that could not be stopped. That was done without their consent.

In my daughters case she is perfectly able to live without life supports. The only way I could end her life is by taking away food and drink which is a normal function of life. This is what I understand was allowed in this case. Where are we going to stop? Who are we going to refuse to feed. They talked about pain. Pain can be controlled with medications and usually is. Both my father and brother were not in pain.

I am reluctant to say this case is wrong without knowing the case personally but it opens a door to real abuse.

[NYC_SKP]

12. I'm taking the mum's side on this. Twelve years of agony, it can't have been easy.

I've read more than is provided in the ITV story, this is just a tragedy for the parents and the child.

I'm not going to profess to know better than this parent.

http://www.opposingviews.com/i/society/mothers-heartbreaking-story-having-end-her-suffering-daughters-life

[AtomicKitten]

18. I am horrified by this decision.

It was a routine procedure that had the child "screaming in agony," but was it really physical agony or did she just not understand what was happening to her?

I was horrified when the Nazis disposed of disabled children. As a mother, I can't wrap my brain around this final solution.

[LeftyMom]

19. I think using this family's suffering to make a point is appalling.

I also think you're really, really stretching the facts of the case in the process.

[loyalsister]

21. Have you heard people suggest that making reproductive decisions for someone else should be policy?

Well, that is exactly what happened because of the Buck vs. Bell ruling. Following that, a number of states enacted the legislation that resulted in thousands of forced sterilizations of marginalized people (people of color, immigrants, disabled, and poor people) in the US.
Court rulings are very frequent precursors to policy and they very often have international implications. As did Buck vs. Bell.

[LeftyMom]

25. Have you heard of the slippery slope fallacy?

Because you're committing a textbook example of it all over this thread.

[loyalsister]

28. Really?

"Hitler proudly told his comrades just how closely he followed the progress of the American eugenics movement. "I have studied with great interest," he told a fellow Nazi, "the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value or be injurious to the racial stock.

10 years after Virginia passed its sterilization act, Joseph DeJarnette, superintendent of Virginia's Western State Hospital, observed in the Richmond Times-Dispatch, "The Germans are beating us at our own game.""

http://www.sfgate.com/opinion/article/Eugenics-and-the-Nazis-the-California-2549771.php

[LeftyMom]

30. Thanks for making my point.

If you go straight from "I question this mother's motives in the absence of any actual reason to do so, and the facts of the case as determined by the court because they're inconvenient to my argument" to "because Hitler" without passing go or collecting $200, you're engaging in fallacious reasoning.

In fact that particular example of fallacious reasoning is so common and egregious that there's a nickname for it: http://en.wikipedia.org/wiki/Reductio_ad_Hitlerum

[loyalsister]

35. You really see no relationship between

withholding care as a matter of policy and\or out of public or personal self interest? It is legal to deny care that could have life saving implications in the US. Policy makers have done this very often via medicaid cuts. Thus, a policy that withholds care may threaten and\or end the life of a person who needs it. This has been done quite often in the name of fiscal responsibility to tax payers. In MO it was oxygen and podiatry care and it really did kill people.

Do you deny that alleviation of the child's pain was closely tied to relieving the mothers emotional pain.

Ridicule if you want. The fact is, what I am talking about really did happen. A single decision led to a policy that evolved into a horrifying offshoot. It's not a simple analogy. Actual lives and\or the ability to reproduce of real people were sacrificed for their own good (the progressive justification) and\or for the betterment of the human race (the conservative justification).

[bananas]

31. It's not a slippery slope fallacy

http://www.nizkor.org/features/fallacies/slippery-slope.html

The Slippery Slope is a fallacy in which a
person asserts that some event must
inevitably follow from another without any
argument for the inevitability of the event in
question.

She didn't say out was inevitable, just a possible consequence - which it is, so there's no fallacy at all.

[Ampersand Unicode]

32. I actually support that decision for personal reasons.

I have always said that my parents should have been prohibited by law from reproducing. My father had a personal and family history of mental illness and substance abuse. My mother's side of the family has long had untreated bouts of mood swings, depression, and other erratic behavior. I have an aunt who is an obsessive hoarder with paranoid tendencies and an uncle who committed suicide when he jumped out the window of a mental hospital.

A genetic powder keg like my family should not have been allowed to create more copies of themselves. Yet they did, and here I am. Unemployable piece of shit, with zero real-world, 21st-century job skills, mood swings and anxiety issues of my own, and a deep-seated distrust and hatred of other people. I will end up a useless bottom-feeder serving up coffee or washing toilets for pennies on the dollar, and all because these people were not sterilized by law. If you knew me in real life, you might reconsider your stance on Buck v. Bell. Or you might be an incurable optimist who believes that everyone is "special," even those who bring nothing to the table and contribute zilch to society. People who rue the day they were born and feel guilty for the inevitable, involuntary, and unearned "support" from taxpayers to keep them alive even though they don't really do much else but eat, sleep, and shit because no one will hire them and pay them enough salary to be contributing and productive citizens. People who would give anything to undo the mistake of their birth because they suck horribly at life.

In other words, people like me.

Ich bin lebensunwertens leben.

[mackerel]

34. Well you're certainly a good writer but I hear you regarding family. Come from the same lot.

I'm more fortunate than my other siblings but not by much.

[jwirr]

43. You may be correct about your own personal circumstances and no one can judge you on that but I

have a question. Where do you draw the line? My family also has five generations of bi-polar with many cases. But out of those 5 generations with probably 50 some cases only 3 were not able to function in a real life situation. Of those three one died in a mental institution, the other died living with my mother's family and my brother lives on our family farm with his wife and for the most part takes care of himself although in a very offbeat way.

If we take the suggestion that somewhere in that 5 generations someone should have been sterilized then 47 people who have a degree of the disease but have coped with it should not have been born. The eugenics movement did not set any limits - if you had someone in your family who was considered inferior then you did not deserve to exist.

I would not be here except for the fact that around the late 1930s this country put an end to most of those kinds of actions. My mother would have been sterilized because she was the sister of a mentally ill woman and had two mentally ill aunts.

I believe that individuals can make their own decisions regarding sterilization or the use of birth control but when it becomes a movement enforced by the state it is wrong.

[smirkymonkey]

69. I am so sorry you feel that way about yourself.

Honestly, I know how you feel. However I try to keep going. Please don't be so down on yourself. I am sure that you have much more going for you than you think. It sounds like you don't think much of yourself, but you might be surprised at how others have a much higher opinion of you than you do of yourself.

[jwirr]

42. God, I assume you are talking about the eugenics movement of the late 1800s and early 1900s

in the case you site. My family was victims of this movement in that two of my aunts were sterilized against their will because they were mentally ill - or at least their husbands said they were. Back then all you needed to get someone committed to an mental institution was 10 witnesses. In my one aunts case 10 friends of her husbands. I do not know about the other aunt because she was my great aunt. Did not get to know her.

I think you and I have walked some very similar paths.

[loyalsister]

47. It was an ugly time

I remember seeing a "welfare queen" story in the 80s, and my dad said "they need to just spay them."
of course, he didn't know that his daughter would have been a target of eugenics in an earlier time, but I know he didn't come up with that idea himself. It's a mentality persists today, and I hear it from people who I wouldn't expect to think that way.

[muriel_volestrangler]

22. More detail here (even an interview with the mother that may play for you)

http://www.dailymail.co.uk/news/article-2808516/My-daughter-no-longer-daughter-light-eyes-gone-Mother-tells-heartbreak-hardest-decision-parent-make-let-disabled-child-die.html

Several people here are asking about the pain; "But a routine operation in May 2012 to remove kidney stones left her with an infection and specialists told her parents there was nothing more they could do. She became immune to the strong pain relief cocktail of morphine and ketamine, leaving her in agony." Remember, this is a child that has never been able to talk. The mother had said "She is now merely just a shell. The light from her eyes is now gone and is replaced with fear and a longing to be at peace". The doctors agreed about the suffering.

[jwirr]

45. I have not doubted the mothers dedication. And this does make it more undertandable.

[SheilaT]

27. No one who has never been faced with a decision like this

has any right to judge someone who has. Period.

I do not have a handicapped child. I have no idea what it might be like. Oh, I can read accounts and I can think what I might do, but if I have never actually been faced with this, I don't know.

Nor does anyone else.

[gollygee]

36. +1

I am blessed with two healthy and happy children. I'm in no place to judge this situation. If one of them were in constant horrible pain with no end, and no ability to communicate or be communicated to about it? Wow. I can't even begin to imagine.

[jwirr]

46. I have. My daughter is very much like the child in the article and I have faced death situations

with her while I took total care of her for 45 years. For 15 years of that she suffered from endometriosis all but one week of the month and depression. We were lucky enough to find a cure for that. So I have walked where this mother has walked. I do not blame her for her decision. I just have never gotten to the point of thinking her life was no longer worth living.

And I do not have to understand everything about this case in order to be afraid of the consequences to others. One just needs to know history regarding how the disabled have been treated in the past to know what could be possible.

[REP]

50. There's no comparison between kidney pain and endometriosis

My successful kidney surgery was the most painful thing I've had done - and I've had my endometrium burned away with boiling saline, pass kidney stones every 30-45 days, have nearly severed my thumb, have had a pasturella infection so severe amputation was on the table ... point being, I know pain, even uterine pain, and kidney pain is by far the worst.

I am disabled, too. If I had to live the rest of my life feeling as I did the 15 days after my kidney surgery ... Well, I wouldn't be here now.

[jwirr]

54. Endometriosis was just the tip of the iceberg with my daughter. It was used as one of the examples

of pain she has gone through. She is severely disabled and has gone through many crisis. Fortunately we have weathered them so far. She is now 55 years old and her doctors say she will live a lot longer. What I was saying is that I have had the kind of death situations that the mother had. By the way in none of my post have I condemned the mother. With pain that cannot be controlled in any way I would have made the same choice. I have been fortunate enough not to have to be able to find pain relief for her. The day may come when we cannot.

My point in all my posts has been that this new ruling opens some very dangerous door for disabled persons. Are all of you suggesting that no one will ever try to misuse the ruling? History tells us that they have and will again. That is what I want to make sure we protect people from. Let the rule stand but do not blind ourselves to the possibilities.

[mackerel]

33. What would be best? Conserve the child? Make the child a ward of the court?

Would the outcome have been any different?

[loyalsister]

37. I don't know what would have been best

But, a decision such as this has very real potential to have implications beyond that particular circumstance. If not policy in the reinforcement of biases that lead people to ask people with disabilities (even when they don't know them) if they have considered suicide.

I just think it needs to be viewed with awareness of the tendency among humans to view some lives as less worthy than others because they are in pain, live in poverty, are a drain on others, etc.

[mackerel]

38. I get what you're saying to a point. I don't think it is a bias

for people to have strong emotional feelings about those in severe pain. It's not really about thinking that those in chronic pain live lives that are less worthy but I do believe people are more empathetic to the severity of the situation. Especially in cases where most likely the situation will never change. The case you posted is one of these type of cases.

[loyalsister]

49. Have you ever heard someone say they would rather die than live in pain?

The idea that a life is not worth living can be based on good intentions and sympathy. I once heard "maybe it would have been better if he had died in that accident" in reference to someone who has a severe spinal cord injury. That is an example of a personal bias that someone believes they can impose on another person regarding the value of his life.

Another friend once noted that she would not have had her child (who has autism) vaccinated if she had known what the results would be. In other words, she would have risked the lives of her son and others in order to prevent him from being who he is.

My intention is not to be harshly judgmental. Only to point out what has happened historically, and the fact that we are not so far beyond what brought us to that point.

[nomorenomore08]

53. I think it's very important to make a distinction between personal belief or preference

in itself, and, as you said, imposing said belief or preference on others.

There are a number of severe disability situations I myself would not want to live with. But I would never presume to impose my standards of "a life worth living" on a total stranger.

[Boudica the Lyoness]

63. In answer to your question; yes.

Me.

Have you no empathy?

[Marrah_G]

62. You have really hit a nerve

I'm going to log off DU after I post this.

You have no idea what it is like to what a child suffer in pain who cannot communicate in any way- all they can do is lay there and suffer. I have watched it. It is a hell I hope you never have to fucking go through. This is not about just a disabled child, this is about a child who is suffering enormously with no hope of recovery and zero quality of life. it takes a huge amount of strength to let that child that you love go. The mother isn't a murderer, she isn't selfish.

I suggest you delete your responses because frankly you don't have a clue what you are talking about.

[ZombieHorde]

51. I respect the different opinions about this.

I don't believe in right and wrong, but I do personally value compassion. I believe both sides of this debate are based in compassion.

[hedgehog]

55. I think we are only getting part of the information regarding this ruling.

I tried to Google the story, but all I could come up with were slightly disreputable sources (The Daily Mail) which merely reprinted the original story with no further information.

[Marrah_G]

57. Have you ever watched a child suffer in pain with zero quality of life?

Unless you have I don't think you can judge the mother.

[Marrah_G]

59. And another thing, she didn't "murder" her child

Your suggest that she did is offensive as hell.

[KamaAina]

60. Headline should read "Disabled girl loses right to continue living"

[WinkyDink]

65. You equate an interview to "all about the mother," who certainly did NOT act out of "stigmas and

stereotypes" but of love and compassion.

To define a mother as merely someone "who has a vested interest in their (child's) death or survival" is to demean the relationship and worse.

[KamaAina]

67. ASAN Statement On The Killing Of Nancy Fitzmaurice

ASAN is the Autistic Self-Advocacy Network. Disclaimer: I am the local ASAN contact person.

http://autisticadvocacy.org/2014/10/asan-statement-on-the-killing-of-nancy-fitzmaurice/

The Autistic Self Advocacy Network is profoundly concerned by the recent decision from the United Kingdom allowing Great Ormond Street Hospital in London to kill Nancy Fitzmaurice, a disabled 12-year old, through the withholding of fluids at the request of her mother. The decision constitutes an extremely troubling legal precedent, representing the first time the British legal system has allowed a child breathing on her own, not on life support and not diagnosed with any terminal illness, to be killed by the medical system....

When parents and physicians have the ability to authorize the killing of disabled children, we see serious abuses. Recently, ASAN and twelve other disability rights groups filed an amicus brief in a case challenging the University of Wisconsin Hospital’s practice of counseling parents to withhold care from children with disabilities for treatable but life-threatening medical conditions. In one such instance, a child with developmental disabilities died after a hospital doctor advised his parents that they could withdraw his feeding tube – which provided fluids and nutrition – based on his supposedly low “quality of life.” The medical condition supposedly justifying this measure was treatable pneumonia. The child died the next day, after administration of morphine. Such actions demonstrate the results of a policy that allows families and clinicians to discriminate on the basis of disability in the application of life-sustaining treatment.

The media coverage surrounding this case has been extraordinarily irresponsible, implying that the child’s disability should justify a decision that her life was unworthy of living. ASAN is concerned that the voices of people with disabilities with similar support needs were not heard in this discussion. Many people with disabilities who utilize feeding tubes or experience other conditions similar to those Nancy Fitzmaurice face live in the community and do not feel that their lives are not worth living. The absence of the voices of people with disabilities who could shed light on the lived experiences of children like Nancy is troubling in the extreme.

We urge advocates and policymakers to stand against legal and legislative decisions enabling the killing or withholding of life-sustaining care from disabled children and adults. As ASAN’s previous work has indicated, people with disabilities continue to face systemic and ongoing discrimination in accessing the medical system. Inaccurate and dangerous assumptions that our lives are not worth living have claimed too many lives. People with disabilities deserve better.

[loyalsister]

68. Thanks!

As I was exploring the web on this subject, I discovered that Nazi physicians cited Buck vs. Bell in their Nuremberg testimony.

Many of us are disturbed or pleased with court decisions on reproductive rights, voting rights, collective bargaining rights, etc. We know that they have potential to shape future policy and they can have global implications.

Some may not fully understand how this relates to those of us who are disabled or have loved ones who are. It's not a matter of not having compassion for those involved. We are just acutely aware of a need to defend ourselves. There is no doubt that, even today, enough people view our lives as less valuable that we need to be on the alert for legislative efforts that reflect that ideology.