Saturday, January 13, 2007

Ashley's Treatment

I saw something disturbing today. I saw a young man, maybe twenty-two, in a bookstore with what looked to be his father. I figured the connection because those two noses had to have grown from the same patch of soil. They walked slowly, stopping now and then to look at something. The young man was significantly, severely, profoundly disabled. He was in a wheelchair, his body formed odd angles. His beard, neatly trimmed. His clothing, fashionable. His father, attentive.

There was was pure simplicity of the time they spent together. This was a young man who would take time to care for, who would need much, who some would call 'burdon'. But the burdon must have been light because his father seemed to have no difficulty in pushing the chair, and no difficulty finding words to chat with his son about what they saw together. And the son gave back. He glanced at his father with pure affection and love. He smiled at his father's jokes. He, once, reached out and held his Dad's hand. This was a relationship in the truest sense, it was reciprocal, both meeting the other's needs.

This man and his father, this man and his family will never be the focus of media. They will never be noticed by history. They will never be discussed in a public forum. They will simply be a family.

Yet they live here in Vancouver merely miles away from Seattle where a young woman, Ashley, was surgically butchered by her family to ease their care of her. Her insides were ripped out so that menstruation wouldn't be a bother, her breast buds and milk glands removed - to protect her from abuse (an irony if ever there was one), then she was placed on huge dosages of hormones to fuse her bones and make it such that she will not grow, not become too heavy, to difficult to care.

She is surgically altered by a family who claims love - while another family trims the beard of their son. It disturbs me that one family becomes the subject of discussion while another family goes quiet into the world, goes gently into love, goes well into care.

It disturbs me that I hear nothing about child protection agencies - isn't this their job? I hear nothing about advocacy groups taking legal action. If Ashley had been a Yorkshire Terrier, the humane society would have reacted with passion and anger. Why isn't it wrong to do Nazi experiments on children? Especially when other families deomonstrate, daily that care is possilbe. That growth isn't a burden. That love may mean the extra bother of trimming a beard!!

I sat in my wheelchair and watched the two of them leave Chapters, go out onto Granville and then go out of my vision.

I wanted to scream.

I wanted to make noise.

I want to do something.

Write someone.

Complain somewhere.

Demonstrate loudly.

Protest at an embassy.

Someone help me. What do we do? How do we respond?

Where do we put our anger?

What do we do with helplessness?

Does anyone know?

If there is any kind of organized resistance or protest to "Ashley's Treatment" as it is called, please please let me know.

28 comments:

lina said...

Thank you Dave, for saying something - for speaking your anger, for not remaining silent which we are all guilty of doing!
And if this organization exists and comes forward to you, will you please let us all know, I want desperately to become a member!

justme said...

Dave,
I belong to several listserves for parents of children with special needs and I think the Angelman syndrome list is writing to the AMA in protest and I heard there was a protest in Chicago. This has definitely been the "talk" of the listserves and webforums where I hang out.
I agree this "treatment" is a dehumanization of people. Most of the parents I "know" who live with their adult children have enjoyed experiencing their child's growing up, watching their bodies mature and their brains mature. For although some brains work differently than others I believe our maturation is a sum of our experiences, not how we process them.
We are looking down a slippery slope here and I don't believe anyone has the right to mutilate someone else.
I have to admit whenever I hear someone say they agree with the parents or they "feel" for the parents I want to go ballistic on them.
If I hear of anyone else protesting I will be sure and post.

Lisa

Lily said...

I read the news story about Ashley last week with great sadness and a flood of emotion -- with no idea how to express the deep burden of feeling that washed over me and continues to flood my soul at every thought of her. Thanks Dave, for giving me some words to put to those feelings... Thank God that there are voices out there like yours to speak for those who have no voice.

We have to stick together, we have to get louder. We have to get stronger. We have to...

Leann said...

I feel the same way you feel.I feel it when inocent ones suffer every day .I hate the abortion clintics for making inocent babys die just because their parents didnt use a condom or just dont want them.where do we go for help?when this world cares so little for life they kill babys and make it a law to be able to.untill some one stands up and stops the killing and the other harm done to people.this kind of thing will keep happening.all I know to do is take Ashley to prayer.only God in His mercy can help her now.and who will help the unborn?thank you for your sharing of the love in that amily who really loves their son.it gives one hope that some how this world will change and good will win out. over the evil done under the name of its better for the family.hearing about poor people like Ashley cuts to my heart and makes me feel sick inside cause I cant do any thing.she is only one in many who suffer alone.

Penny L. Richards said...

Since you ask, some of the official statements of protest from major advocacy organizations:

DREDF (Disability Right Education and Defense Fund):
http://www.dredf.org/news/ashley.shtml

ADAPT
http://www.jfanow.org/jfanow/index.php?mode=A&id=3012;&sort=D

TASH:
http://www.tash.org/InTheNews/AttenuatingGrowth.html

Dave Hingsburger said...

Thanks Penny, I'll check these out. Dave

Anonymous said...

http://www.sacl.org/webapp/DesktopDefault.aspx?tabindex=1&tabid=243

This is SACL's statement.

Ashley's Mom said...

It's too late now, but I wish Ashley's family would have let another family raise her, a family who felt they could raise Ashley without butchering her. That's the topic of my latest blog entry:

pipecleanerdreams.blogspot.com

ballastexistenz said...

I wish I knew. That's all I've been feeling in response to this too is impotent rage with no clue where to put it.

Carol said...

Dave, have you met Ashley's parents? Seen them care for her? Know of the love and devotion to her? If they truly had such disdain for their daughter, why didn't they abandon her to an institution?
None of the treatments were experimental- though this was the first time they had been used together and for the soul purpose of stopping growth. She will still mature, she will still age. Nothing can stop the march of time. She will just be a smaller adult, which is to her advantage because it allows her family to hold and hug her, which she LOVES.
Being held and carried reduces her risk of bed sores and pnuemonia as well.
I have personally cared for severely delayed adult women with large breasts, and they do cause chronic problems. The skin underneath is constantly breaking down and is very painful. Why should Ashley have to suffer just because some people see breasts as the measure of being a woman?
Just for the record- I too am the parent of cognitivily disabled child and do not feel that this threatens her in any way. It would not be appropiate for her at all.
I worry more about the search and destroy mentality of prenatal tests and the 'she shouldn't be here' mentality.

Anonymous said...

It's amazing all the justifications that have been used to say that this "treatment" is for Ashley's benefit, not the families. For instance, the removal of her breast buds is because she has a family history of breast cancer and this will prevent her from having to develop that. Lots of women have a family history of breast cancer and you would never hear of those young girls having this done to them. Heck, many women develop breast cancer with no family history, why don't we just remove the breast buds from every single young girl. We could eradicate breast cancer and save the overburdened health care system tons of money and reduce wait lists for other conditions. And think of the lives that could be saved!!!
Why is no one talking about this being a "new breakthrough treatment" for breast cancer???
Afraid of the backlash from the bra and porn industries? I bet the laleche league would be out in force.
This treatment is wrong, plain and simple. We aren't looking at a slippery slope but are sliding down that slope too quickly if this is allowed to go unchallenged.
Carol, you say this wouldn't be appropriate for your daughter. If this is accepted how do you know that you will have the choice to deny this treatment for your daughter? What if it is mandated and you are seen to be burdening society by being so selfish as to not mutilate your daughter for the "greater good" of society.

Carol said...

They only mentioned the breast cancer issue as added benifit. It was not the sole purpose for the breast bud removal- though the higher doses of estrogen did increase the risk. Millions of adult women take on that risk when they opt for the Pill. And there are plenty of adult women who have had mastectomies to prevent breast cancer! Just search it- it's not unheard of. What is a breast compared to your life, and for some even peace of mind.
The reason for the bud removel was simply for her future comfort. As I said, large breasts when lying down most of the time, or when straps are needed are VERY uncomfortable for women. No air flows under the breast and the skin festers and breaks down. What is the point of her dealing with that? For what purpose? Cause the LaLeache leagues thinks breast are the be all and end all for women? I breast fed all 7 of my kids, but if they cause me more pain their worth, I wouldn't hesitate to fix the problem. She is not going to be needing her breasts. Most young women will find uses for their breast and they will not be the cause of pain and suffering. That is THE difference here.
Dave just wrote a wonderful blog about accepting the differences in people with disabilities and doing the right thing for them, where they ARE, not where we THINK they should be. We only find this offensive because we USE our adult body. Because she can't sit or move, weight, breasts and a period each month are going to cause her to SUFFER- and for what purpose? Women put up with such things because we know it allows us to give birth and nurse and is part of being a woman. Ashely is forever a baby, and there is nothing wrong with that, it's who she is.

I DO worry about choice regarding my dd's medical treatment. I have already been asked if we wanted to let her DIE. I worry that the Drs WON'T do what is right for her, more then they will do something against my will. That has bee our battle so far. There are parental right issues here as well. Who better to know the child then the parents? What if we allow the public to make medical descions for out dependent children?!?! Do you REALLY want THAT????
You can already see how misunderstood these poor are and how they are being protrayed as monsters for simply caring for their daughter whom they obviously love a great deal. I worry a lot about being misunderstood by the public and having them ACT on those misconcptions over riding my rights as a parent.

This is a very complicated issue to say the least!!! And I am surprised at the disability community's hostility towards the parents with out really knowing the family. Seems to go against all we stand for......judging with out having walked their walk or really listening to them. Also worries me that so many accuse them of mutilating their own child after all the years of devotion and love for her. That must really hurt them. IT would hurt me- disagree, discuss, but to acuse them of such atrocity? Is that really how we want to be treated when faced with decisions about our children that others may not understand?

ballastexistenz said...

There's the parents feelings on one hand.

There is Ashley's body being violated on the other.

I have a lot of trouble seeing the two as equivalent.

Parents who think they are acting in love can do things that bear little resemblance to love. Parents who think they are acting in someone's best interests can make awful mistakes.

It would be horrible not to speak up about a wrong just because the people doing something wrong don't feel it's wrong, or just because they'd feel bad.

And I don't think it's anyone else's call whether someone is "using" their body parts or not. She's "not using" her arms or legs either, and I haven't heard of her parents wanting to remove those to make her lighter.

Perhaps part of the reason I at least am so outraged is because I've had to live the long-term consequences of decisions made as if they're "best" for me, sometimes by people who thought that I would never understand or object.

I made a video called In My Language. It's dedicated to Ashley and everyone else who's ever been thought of as non-thinking, non-communicative, certainly not enough of a person to warrant outrage on their behalf when someone (even a loved one, even someone doing something in love) wants to mutilate them like this. It talks about a language I have (and find more easy than writing) that not everyone can speak but nobody is judged so harshly for not speaking my language as people like us are judged for not speaking yours.

Carol said...

I am not naive enough to think there would never be abuses. Abuse hsppens every single day to children, elderly, women.. the list goes on. But we don't deny someone the chance to improve their quality of life because of the fear of abuse.

Are you saying that parents should not be allowed to make descions for their children in such cases? Who would be given the responsibility to make such desisions then? When the Drs insisted we deny our dd life saving treatment who should have had final say? Some believe her death would be the better option for her...this is the Pandora box that has been opened here. I don't think the actual treatment she received is the whole issue.
Most women who have had hysterectomies to be relieved of painful periods are not going to take kindly to the word's "mutilate" and I wonder how the words used here make breast cancer patients who have lost breasts feel? We had come so far in not defining people by body parts.

The jump to amputate her limbs is a straw man. It was never a consideration and never would be in her case. It's just a way to turn the conversation towards the absurd.

From what I read Ashely communicates very well with her family. They seem to understand what she needs and wants. They clearly stated she cries when in pain, likes company and to be with the family, smiles, laughs etc... she is afraid of blood. Maybe too many blood draws in her life?
I am offended that you equate baby- with non-thinking or inability to communicate. Any mother knows babies are expert communicators.

You obviously are capable of communicating complicated thought very well! Ashley will never be able to communicate at this level.

What harm has been done to stop breast growth, periods and reduce her over all size?

And also for the record, I think my dd will get married someday and who knows about children??? Perhaps... too soon to tell.
This is not a one size fits all treatment... no matter how often people want to make it seem that way.

Bottom line here is who makes life altering medical decsions for children who can not make them for themselves? I don't know about other people's kids....typical or not....none came with directions.

Carol said...

PS: Just watched your video and loved it!
Very soothing.... like music. :-)

ballastexistenz said...

As I said in the video, the only way any of us who think differently enough are taken seriously is if we speak your language. You are proving that point. A little over ten years ago it was said that I was too severely developmentally disabled to have a personality. Would you argue that everything done to me at that point would have been in my best interests so long as the people doing it loved me sufficiently so long as I was never able to object in any way that anyone would interpret as complex language? If I'd never learned to use complex language for communication, people of your viewpoint would be sitting here right now justifying the same atrocities, and people like me would be said to use too complex language to have any say in the matter.

I do not have the experience of having Ashley's exact disability. I do have the experience of being written off as cognitively non-existent (and therefore, for some reason, as lacking in rights and personhood) while other people made horrible decisions "for my own good". I am more able to escape that at this point in time, but I don't think it would make it any less awful if I were unable to escape it. More awful, actually.

My own belief is that the more a person is subject to other people's choices without any right of protest, the more stringent protection their basic human rights need. You seem to be saying the opposite, that I would have the right to avoid a forced hysterectomy because I can currently at this exact moment defend myself with words (don't ever think that they stay where I left them and that I can always find them), whereas she has no such right because she cannot and may never. I would say that she needs a lot more protection in this regard than I do, not less.

Carol said...

Your response raises more questions then it answers. :-)
I see your point... as well I can from my persective.

The question remains regarding treatment of people who are not able to communicate either because of not understanding or physical barricades that doesn't allow communications for what ever reason.

How are care givers supposed to know the right path for their child. And isn't it equally as abusive to let indecision and fear keep you from providing what could very well improve life?

And lets say Ashely is someday able to communicate and get up and move around, what harm has been done to her with this treatment? It has not harmed her cognitive ability, would not prevent her from walking, talking, eating etc.
If she really wanted breasts, those are pretty easy to come by these days. Having a baby would of course be lost forever and that would be a tragedy if she wanted one and was capable, but it doesn't appear as though that would even be a remote possiblity for her.

You have really given me pause, and I do think I understand what you are saying. But being the care taker in charge of many things for my daughter, I am having trouble seeing how this works out in real life.

I have not had the experience you have. I know all kids have things done to them they may not appreciate or may have been totally wrong.... but to have your person violated in basic ways would be horrible. But I also feel for your parents, or who ever made those choices if they did so with the belief it would somehow help.

As I said before, kids don't come with a manual, and even more so for children with disabilites. So little is known and parents are left to sift through it all and do the best they know how.

What is going to happen if loving parents lose the rights to treat their children? When you were not capable of letting others know your wishes, who would you have wanted to be in charge of making those choices for you?

And what if you were never able to get your wishes across to others?
How would you like to be treated?

As a mom, your statment about Ashely needing more protection in her position, struck a heart chord...but does not give much direction as to how one would do that. Knowing the heart of another is immpossible. There is a 50/50 chance that Ashley would agree with the treatment.

Anonymous said...

And what if you were never able to get your wishes across to others?
How would you like to be treated?


I for one would like to not have bits cut off me or out of me because they made me harder for other people to manage. Just to be clear, if I was ever in a non-communicative position, even if it looked to be permanent and definitive, I wouldn't want anyone to cut off our out whatever parts made me less convenient to care for.

There is a 50/50 chance that Ashley would agree with the treatment.

Just because there's two choices doesn't mean that there's an equal possibility of each one. A better thing to do is look at the number of women who have double masectomies becase they find big breasts are uncomfortable. And then the number of women who have hysterectomies because they don't want to deal with menstruation or possible pregnancy. And then the number of women who want treatments to make themselves and people like them shorter. And then figure out how many are lining up, voluntarily for the whole package. I'd be surprised if you could find one.

Keenan said...

I am still in a state of shock and disbelief that a hospital ethics board could have approved this. And I am disgusted by any suggestions that this is about Ashley's needs. It is not.

Forced sterilization of people with disabilities (popular not so long ago and still with many adherents) is not about the hopes and fears of that individual, it is about the fears of others who have control over that individual, who is entirely powerless.

This is no different. People can do horrible things with the best of intentions. Those intentions do not render the act any less horrible.

The comment that no other person with a disability has anything to fear from the deliberate carving up of Ashley's body is not coming from someone who is in a position to know that. And unfortunately those who have the most to fear are not able to voice that fear, and those who are supposed to protect them - like hospital ethics boards - are apparently capable of getting so excited to perform "experimental procedures" that they've lost sight of their job - to ensure ethical conduct!!!

Anonymous said...

Thank you Dave for your comments. I have done some reading on this and have been horrified that most people seem to be in favour of this treatment.

I do sympathise with the families situation, at least here in the UK we have a welfare state to fall back on but it raises so many issues for me about no one speaking up for Ashley and recognising that she might have an opinion seperate from her carers.

Where were the advocates in this situation? Who spoke up for this child's rights not to have her body forcibly changed to convenience her care givers needs?

What scares me most is this is just one of many stories where people with severe disabilities have their fundamental human rights taken from them. And society increasingly nods it's head in approval.

Thank you for being one against the tide.

Cathy said...

In the Uk Scope have started a campaign against medical interventions to prevent disabled children growing see www.scope.org.uk apparently hundreds of people have signed up already, pity it's not thousands or millions!

keenan said...

After reading a commentary in my local paper rationalizing this as somehow logical and acceptable I got so pissed off I decided to write a letter and it got published.

http://www.liveworkplay.ca/MED/cit-ashley-jan-24-07.pdf

Anonymous said...

Dave, you are an idiot if you cannot see the benefits for this child. Same to you keenan. I have not seen one reasonable argument yet justifying your outbursts. This is not the same thing as the sterilizations carried out nearly a century ago so quit trying to compare the two.

I agree with Carol completely. Why does this matter so much? She wasn't going to use her uterus or breasts anyway!! She has the mentality of a two year old and can't even swallow her own food!!

Dave Hingsburger said...

Anonymous ... I typically don't respond to comments posted on my blog but for you I'll make an exception. I deplore name calling bullies who don't have the courage to put their name to their comments. At least Keenan and I have the guts to put our names behind our opinions. I don't mind disagreement but I don't like bullies and I don't like namecalling.

Dave Hingsburger

keenan said...

>Anonymous said...
>Dave, you are an idiot if you >cannot see the benefits for this >child. Same to you keenan. I have >not seen one reasonable argument >yet justifying your outbursts.

Please keep looking.

>This is not the same thing as >the sterilizations carried out >nearly a century ago so quit >trying to compare the two.

Some of the attitudes justifing the Ashley Treatment are very much the same as those offered in favour of sterilization: that people with disabilities have (and should have) lesser rights than people without disabilities.

>I agree with Carol completely. >Why does this matter so much?

It matters about as much as it matters that no one will take away your ability to express your opinion even though you cannot appreciate why altering the body of a human being for convenience is an unbelievable violation of that person's fundamental rights.

> She wasn't going to use her
> uterus or breasts anyway!!

I am sure that argument will go over very well at your local convent.

> She has the mentality of a two
> year old and can't even swallow > her own food!!

Sorry if it bothers you to hear this, but she is a human being, and that gives her the same rights as the rest of us.

I'm wondering what test you thinkg we should use to decide which human beings should have the right to grow up?

Ollie Law said...

"Some of the attitudes justifing the Ashley Treatment are very much the same as those offered in favour of sterilization: that people with disabilities have (and should have) lesser rights than people without disabilities."

The Ashley "treatment" is sterilization. THe hopsital ethics board believed that as Ashely could not reproduce with consent, she was not being forced into sterilization.

I believe that Ashely's parents have a duty to Ashely, on caring for her. Normally children fly the cuckoos nest, this isn't the same in Ashleys case, her parents will still have to care for her untill thier old age, 80 year olds, would have troubles moving a young adult who isn't helping them. I believe that the "treatment" is the best way for them to fufill the duty as parents now and later in life.

Ollie

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