It begins with Ashley.–4th and final update

January 4, 2007 at 7:20 PM (Mad Medic Thursdays) ()

As I thought…not a word from the disability community was presented onscreen. [Update/ Modification: they are having a disability attorney who also is a caregiver for a disabled son on a new night 1-9 2006]They did have an ethicist who took the position we need a that society should assist the parents with tech and support and another who basically said, [I’m paraphrasing here] We don’t deny patients Prozac because it alters them, so why not have this treatment…both ethicists were, of course able and male.

2nd Update January 8 2006.

On CNN tonight: Paula Zahn Now is running this story tonight January 8th 2006 @ 8:00 EST
I’ve emailed them Mary Johnson’s analysis listed below, but I’m not holding my breath waiting for them to use it.

I’m trying to stick to the facts, to the level of cognitive impairment that this girl has…

and as I think further, I’m half wrong…no one actually knows to any degree of satisfactory certainty what kind of inner life a three month old child has, and how it might be adversely affected by not being permitted to develop.

I *hope* that this is just misdirected love for their child and I will assume that.

Here are the troubling things about this for me.

If we begin here, in the case of severe cognitive impairment, none of the sympathy given the parents does *anything* to assure me that when the *physician led ethics committee* agreed to this, that there was any kind of discussion of “this far, but no farther.” They aren’t Mengele…there shouldn’t even be a “ok” for the cognitively impaired but not for the rest….and *as* for the rest of us….I didn’t hear:

“We, the educated medics, would *never* consider this kind of involuntary bodily mutilation for a person say who was *just as physically disabled and difficult to move as Ashley,* but will have the brain, and emotions and sentience of an *able adult.*” I am not convinced that those of us less impaired than Ashley (I have cerebral palsy, asthma, and other impairments) aren’t *put in danger * of losing rights, and quality and nature of our lives when these things are permitted to take place.

This *isn’t* about the parents at all. I don’t dispute that they believe they are doing the right thing by their daughter. Truly *ethical* physicians *would have stopped this.* Also, if we watch out for the rights of “the least of these,” we are also protecting ourselves. To the parents I say…a Hoyer or other lift isn’t “impersonal.” It can be *freeing* for the parents.

Yes, those of us whose impairments are “nothing like Ashley’s” as the doctors suggest have *every obligation* to fight against such things, to have a hand in making sure that such things are *never thought of as ok,* so that such can *never be done to us!*

That said, if it had simply been a hysterectomy, I would have found that “troubling, ” but not the dangerous beginning of a slippery slope that I see this as.

For the record.

My parents were told I’d be a mental vegetable.

I have a Masters. I’ve been married and widowed.

Early diagnoses can be wrong, or overturned by advancement.

And, *Anything between non-sentient and geniuses is *worth cherishing as is*

I don’t find fault with the parents as laypeople who love a child and have specific ideas on how to handle their daughter. My perception is that those ideas are wrong in a larger context and actually unintentionally dangerous to the rights of all people with impairment.

I find fault with the medical
“experts” who ought to have attempted at the very least to convince the parents of the lesser evils of a hysterectomy, encouraged Hoyer lift use and a support system for the parents.

And another thing or two I had to add:

First, and I had forgotten, there are *chemical* ways to stop menstruation: in other words a hysterectomy was the *most invasive choice.* And, as for avoiding pregancy, birth control shots exist that could certainly have handled that, or a tubal ligation, a much less invasive physical option… (If the family history *specifically* ties to uterine cancer, not just cancer risk as a whole, then that would make the choice more understandable, in my opinion. If it’s ovarian, remove the ovaries…etc.)

And secondly The prognosis for Ashley, if even *correct* is, as with any diagnoses *as of the present state of medical science.* Just imagine if in ten years or fifteen, some procedure yet unseen or unknown could increase her cognition or other ability? If, by *positive* medical intervention sometime into her adulthood she became able to judge these events for *herself?*

I wouldn’t want to be her parents on that day.

********************************* Update Sat Evening MST********************

Via this
thoughtful, detailed analysis by Mary Johnson at WIMNS blog, she asks a question that so many have asked why those with impairments are largely left out as being any sort of expert on disabled lives in media stories such as Ashley’s, and the UK’ press response.

11 Comments

  1. Kathy Podgers said,

    Very good insight into this matter. I don’t see the doctors as experts in “disability” issues, but only as “plumbers.” They have technology. Some, like yourself, or myself, can communicate out acceptance, or displeasue at any suggested “treatment,” but this pushes my definition of treatment.

    Still, I will want to “sleep on this” for awhile, and may have mor comment on this later.

    To most folks, including persons with disabilities, I appear totally “normal.” without any disability, without any visable “reason” for my inability to “perform” acording to how I appear. Even though I can verbalize to folks what the problem really is, most folks, and yes, most folkls with disabilities, still “don’t get it.” Seeing is believing. Therefore I am not assured that Ashley’s ability, or lac therof, to communicate would make a huge difference. Until I was correctly dxed, 18 years after becoming disabled, everyone in my family, except my son, actually believed I was “lazy and crazy” because I could not perform like “normal” folks. Even now, with the dx, I am still “treated” as though I were “the problem.”

    I hope Ashley can help us understand each other better.

  2. Kathy Podgers said,

    Very good insight into this matter. I don’t see the doctors as experts in “disability” issues, but only as “plumbers.” They have technology. Some, like yourself, or myself, can communicate out acceptance, or displeasue at any suggested “treatment,” but this pushes my definition of treatment.

    Still, I will want to “sleep on this” for awhile, and may have mor comment on this later.

    To most folks, including persons with disabilities, I appear totally “normal.” without any disability, without any visable “reason” for my inability to “perform” acording to how I appear. Even though I can verbalize to folks what the problem really is, most folks, and yes, most folkls with disabilities, still “don’t get it.” Seeing is believing. Therefore I am not assured that Ashley’s ability, or lac therof, to communicate would make a huge difference. Until I was correctly dxed, 18 years after becoming disabled, everyone in my family, except my son, actually believed I was “lazy and crazy” because I could not perform like “normal” folks. Even now, with the dx, I am still “treated” as though I were “the problem.”

    I hope Ashley can help us understand each other better.

  3. Connie said,

    Re your comment: “I wouldn’t want to be her parents on that day”…

    I’ll go so far as to say I wouldn’t want to be them now, not because of life with Ashley but because of all the scrutiny they are currently undergoing. I don’t think anyone doubts their love for Ashley. They just seem so misguided. I can’t help but wonder though if they would make the same decision today. Would they see things differently now that they’ve been exposed to all this debate? Might they have a better understanding now of Ashley as a *being* rather than an *object*? I hope so for Ashley’s sake since her parents will be making decisions on her behalf for years to come.

    I invite you to read what Steve Kuusisto has to say on “Say It Ain’t So” on the Planet of the Blind.

  4. Anonymous said,

    I’ve been reading voraciously about Ashley and linked to your post from another feminist posting. I am a single mother of a 9 year old with Rett Syndrome–Libbie can’t walk, talk or use her hands functionally. She depends on me for 100% of her care. Still, she’s amazing. I am not disabled myself, but caring for Libbie for the past 9 years has, I believe, made me a member of the disabled world.

    With that said, I would like to thank you for a different perspective on Ashley. I have a parent’s perspective and, to be honest, I totally understand why they did this. Caring for a child with such disabilities is so very difficult, and in Washington state, we get NO HELP from the state (If parents’ income is above the limits) If we want a lift we installed, we have to pay for it. If we need respite, we have to pay for it. As I’m sure you know, equipment for disabilities is outrageously overpriced. In a perfect world, we’d have everything we need, people with disabilities would be able to access any and everything, and people would be kind. But, that isn’t the world we live in, and so, as parents, we are faced with decisions.

    I don’t know if I’d ever consider a treatment like this for Libbie. She can communicate with me through various AAC devices, so I would definitely make it HER decision. But, I’d like to maybe have it available.

    I guess it’s different being the parent, responsible for everything. It’s hard.

  5. Anonymous said,

    I’ve been reading voraciously about Ashley and linked to your post from another feminist posting. I am a single mother of a 9 year old with Rett Syndrome–Libbie can’t walk, talk or use her hands functionally. She depends on me for 100% of her care. Still, she’s amazing. I am not disabled myself, but caring for Libbie for the past 9 years has, I believe, made me a member of the disabled world.

    With that said, I would like to thank you for a different perspective on Ashley. I have a parent’s perspective and, to be honest, I totally understand why they did this. Caring for a child with such disabilities is so very difficult, and in Washington state, we get NO HELP from the state (If parents’ income is above the limits) If we want a lift we installed, we have to pay for it. If we need respite, we have to pay for it. As I’m sure you know, equipment for disabilities is outrageously overpriced. In a perfect world, we’d have everything we need, people with disabilities would be able to access any and everything, and people would be kind. But, that isn’t the world we live in, and so, as parents, we are faced with decisions.

    I don’t know if I’d ever consider a treatment like this for Libbie. She can communicate with me through various AAC devices, so I would definitely make it HER decision. But, I’d like to maybe have it available.

    I guess it’s different being the parent, responsible for everything. It’s hard.

  6. Karen said,

    Anonymous,
    I can empathize with the parents, but there are other ways to address the concerns that were expressed and they do not have to include surgery.

    I do agree with you that the resources for families are sorely lacking in many states, we MUST work toward change that values people with disabilities and their families.

  7. Karen said,

    Anonymous,
    I can empathize with the parents, but there are other ways to address the concerns that were expressed and they do not have to include surgery.

    I do agree with you that the resources for families are sorely lacking in many states, we MUST work toward change that values people with disabilities and their families.

  8. Thirza said,

    I think one thing that continues to bother me in these debates is that the rights and needs of the parents/caregivers are taking precendence over the rights of Ashley herself. I’m sure a lot of things could be done to make my disability easier for others to deal with, but some of those solutions adversely affect me, like losing the sense of emotions. The bottom line is that my disability needs to be treated specifically in ways which make my life easier, not others, which is not selfish or unreasonable. And people can presume what otherwise unnecessary medical interventions would improve Ashley’s life, but people also believed lobotomizing the disabled would eliminate troubling feelings about what was presumed to be a miserable existence.
    I think if Ashley’s parents were concerned about her care and well being and the lack of support then they could have aligned themselves with disabled rights activists and other caregivers and lobbied for increased funding and tangible forms of support.
    By the way I’m glad I found your blog.

  9. Thirza said,

    I think one thing that continues to bother me in these debates is that the rights and needs of the parents/caregivers are taking precendence over the rights of Ashley herself. I’m sure a lot of things could be done to make my disability easier for others to deal with, but some of those solutions adversely affect me, like losing the sense of emotions. The bottom line is that my disability needs to be treated specifically in ways which make my life easier, not others, which is not selfish or unreasonable. And people can presume what otherwise unnecessary medical interventions would improve Ashley’s life, but people also believed lobotomizing the disabled would eliminate troubling feelings about what was presumed to be a miserable existence.
    I think if Ashley’s parents were concerned about her care and well being and the lack of support then they could have aligned themselves with disabled rights activists and other caregivers and lobbied for increased funding and tangible forms of support.
    By the way I’m glad I found your blog.

  10. imfunnytoo said,

    When I first shot this post off, as usual I was leading more with emotion than I should have, so I want to clarify a few things for the commenters…

    In no way, do I imagine that caring for this girl, coming to this decision was an easy thing to do.

    In no way is my opinion meant as a slam to caregivers in general a careless disregard for caregivers efforts and I regret that it may have been taken that way.

    As I’ve explained elswhere, after the emotion is skimmed off the top, I’m still deeply troubled by two things. One, as Thirza notes, the tendency of some folks to mainly visualize themselves in the caregiver’s role, and not as much Ashley herself.

    For me, a person is born with rights, if they have brain activity *sentience.* as the end of all brain activity (for me personally) is the only time to end a life.

    Ashley has brain activity, nine years worth. That makes her *sentient* Not in the usual way it is understood, but sentient.

    And for Ashley, those choices have already been made by her legal guardians, so it’s a done deal.

    I’m sorry the parent’s didn’t expect and were’t prepared for the onlslaught of negative reaction to this.

    But if other parents understand the reasons *why those with impairments have concerns,* perhaps doctors and caregivers would at least accept input from us … all sides of the debate if these procedures are chosen again.

    And, one last note. Those who are upset, angry and pointedly dismissive of our reactions, particularly doctors who say they would *never* choose this type of thing for a more cognitively aware person…

    As Steven King once said, “I trust you about as far as I can sling a piano.” In other words, *not at all.* I don’t trust that once this procedure becomes more commonplace,it would never ever ever become abused.

  11. imfunnytoo said,

    When I first shot this post off, as usual I was leading more with emotion than I should have, so I want to clarify a few things for the commenters…

    In no way, do I imagine that caring for this girl, coming to this decision was an easy thing to do.

    In no way is my opinion meant as a slam to caregivers in general a careless disregard for caregivers efforts and I regret that it may have been taken that way.

    As I’ve explained elswhere, after the emotion is skimmed off the top, I’m still deeply troubled by two things. One, as Thirza notes, the tendency of some folks to mainly visualize themselves in the caregiver’s role, and not as much Ashley herself.

    For me, a person is born with rights, if they have brain activity *sentience.* as the end of all brain activity (for me personally) is the only time to end a life.

    Ashley has brain activity, nine years worth. That makes her *sentient* Not in the usual way it is understood, but sentient.

    And for Ashley, those choices have already been made by her legal guardians, so it’s a done deal.

    I’m sorry the parent’s didn’t expect and were’t prepared for the onlslaught of negative reaction to this.

    But if other parents understand the reasons *why those with impairments have concerns,* perhaps doctors and caregivers would at least accept input from us … all sides of the debate if these procedures are chosen again.

    And, one last note. Those who are upset, angry and pointedly dismissive of our reactions, particularly doctors who say they would *never* choose this type of thing for a more cognitively aware person…

    As Steven King once said, “I trust you about as far as I can sling a piano.” In other words, *not at all.* I don’t trust that once this procedure becomes more commonplace,it would never ever ever become abused.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: