Ashley’s Treatment in the Media (With Update)
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Posted by Mary Johnson January 5th, 2007 |
The most recent act in the ongoing circus that seems to almost routinely surround disability issues in the media is the doctors-and-ethicists show about the 9-year-old Seattle girl, Ashley, whose parents coyly won’t let themselves be identified, but who have chosen to have doctors perform operations to keep her an eternal child.
Written that way, it sounds like science fiction, Unfortunately, it’s all too real.
Ashley is disabled — and that, it seems, excuses things.
“The parents of a severely mentally and physically disabled child have stunted her growth to keep their little ‘pillow angel’ a manageable and more portable size,” is how reporter Lindsey Tanner’s widely distributed AP story puts it. “The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.”
Ashley’s being disabled excuses what would never be countenanced — or even considered — were a “normal” child to be mutilated to ensure she never matures, never menstruates, never has breasts….never gains weight. Can you imagine such a series of surgeries as Ashley has undergone even being considered, much less condoned, by a hospital’s ethics committee, were Ashley not disabled?
The weight is the issue for the parents, according to their manifesto on their Ashley’s Treatment blog: if she gains weight, you see, they won’t be able to care for her anymore.
There are so many things wrong with this travesty of “care,” on so many levels, that it’s hard to know where to begin. But let’s start with how the media is approaching this story.
“The case of Ashley, a severely disabled child from Seattle whose parents have taken the decision to have their daughter’s natural physical development arrested, is as controversial as it gets,” says The Times of London’s Sarah Vine this morning. And there we have the true reason for the media frenzy: Controversy. Not just controversy, but controversy with No Real Right Or Wrong!!
“Right or wrong, the couple’s decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up,” is how Tanner explains it.
Sarah Vine’s take on the issue may be the closest we’ll come to getting a fix as to why this story has become the headline-grabber it has. Vine writes,
Psychologically, it is one thing to care for a disabled child; it is quite another to care for a disabled adult, especially if that adult is your son or daughter. Those who talk about fundamental human rights should imagine themselves changing their daughter’s sanitary dressing; or worrying about what might happen if, after they’re gone, she ends up in a care home where some unscrupulous, or perhaps uncomprehending, co-patient takes advantage of her.
News about Ashley’s Treatment came out last fall, but it made few headlines until the L. A. Times published Sam Howe Verhovek’s story on the case on Wednesday (Parents defend decision to keep disabled girl small). The British news media seized on it right off: The Guardian, The Times and the BBC have all chewed on it by now; The Mail is reportedly flying a reporter to Seattle for an in-depth report.
Back on this side of the pond, Court TV’s Nancy Grace had a run at it last night.
On Grace’s show, it was Dr. Jeffrey Brosco, “a pediatrician at the University of Miami School of Medicine,” telling Grace’s TV audience that “argument that the physicians and family make is that this is in Ashley`s best interests,” and Dr. James Hughes, “the executive director of the Institute for Ethics and Emerging Technologies,” telling Grace that what the parents have done to their child is “no crime at all.” (See transcript.) These were the “experts.”
In Tanner’s story, the experts were the ubiquitous ethicist Art Caplan of the University of Pennslyvania and Dr. Joel Frader, a medical ethicist at Chicago’s Children’s Memorial Hospital, making the point that “as a society, we do a pretty rotten job of helping caregivers provide what’s necessary for these patients.”
Uh… where were the crips’ voices in all this?
Grace’s producers did, in fairness, bring on Lawrence Carter-Long of the Disabilities Network of New York City — but where, one might ask, are the women with disabilities? Where is their voice in the public debate?
Carter-Long had the grace to raise the issue on the air:
why [weren’t] people with disabilities addressed in this matter and why [have] we left it to the ethicists and those folks in the ivory towers ?
Imagine a controversial story about a breast cancer treatment. Would producers and editors leave out women’s voices? Do they even know how to find expert disability voices?
Ashley’s Treatment in the media is all too typical of the way stories about a disabled person’s life get chewed up and explained by anyone and everyone but the people who live those lives. “When it comes to disability, everyone thinks they know what’s best for us,” said one disgruntled disability rights activist to me years ago. “It never occurs to them to ask us.” I’ve often had occasion to recall that comment.
“I started to wonder how this story might be different if Ashley were a boy,” wrote Cory Silverberg on his blog.
Would the parents be removing the boy’s testicles? Would they get permission to have the entire penis removed? I don’t think it would ever enter their minds if they had a little boy. Boys need to grow big and strong. Boys need their penises. Boys don’t get sexually assaulted. This would be going down very differently if Ashley were a boy. . . .
“Because it’s easier to carry her around” is not a compelling reason to permanently stunt someone’s growth.
“Because I couldn’t stand the thought of her being pregnant” is not a reason to permanently make someone sterile.
“Because I can’t imagine wanting to live like that” is not a reason to take someone’s life.
Update
The story that finally gets it right comes late on Friday from the BBC’s “age and disability correspondent” Geoff Adams-Spink. The furor over Ashley’s Treatment, he writes,
goes to the heart of the debate over two opposing ways of looking at disability - the social and medical models.
The medical model tends to favour using surgery, drugs and other interventions to “normalise” a disabled person. The social model stresses that disability is caused by barriers in society - physical or attitudinal - that turns a person’s impairment or medical condition into a disability.
Disability rights legislation is based on the principles of the social model - hence the requirement for businesses to make their premises accessible.
Note, first of all, that the BBC has such a reporter. The BBC also has an entire website devoted to the UK disability movement — called Ouch! – which Adams-Spink refers to in today’s story as “the home of disability at the BBC.” And when a major media player is interested enough in a social issue to devote a beat (and a website) to it, the public gets more informed reporting.
Because he knows where to look, Adams-Spink finds strong public reaction from Britain’s big disability groups.
“This is unnecessary treatment to deal with what is, essentially, a social problem: the poverty and lack of support faced by families with disabled children in both the United States and Britain,” said the DRC’s Agnes Fletcher.
(The DRC is the Disability Rights Commission, a government body.)
Fletcher tells Adams-Spink, “Ashley’s parents say that they cannot afford paid carers to come to their home to support her and this is one of the reasons they give for the treatment; but no one should have medical treatment that is of no benefit to them without their consent.”
It’s about time this point were made in a big media outlet.
Andy Rickell of Scope, a national disability group, insists to Adams-Spink that “the issue is one of fundamental rights.”
“To make such a choice for their daughter is an abuse of this young woman’s human rights and has worrying implications for other disabled people,” he said.
“We would expect any similar case in the UK to be taken to court and the rights of any disabled child protected.”
January 5th, 2007 10:55
I wonder if the parents are seeking Brownie points for not simply “putting her away”? Maybe they could get an authentic Princeton professor to argue for that?
Have we heard from the folks who valiantly oppose clitorectomy for African girls? Or perhaps something about societies who bind girls’ feet or extend their necks or is this considered more like orthodontistry?
Love.
January 5th, 2007 12:44
Ms. Johnson,
I’m the editor of a disability rights newspaper from Illinois called The Catalyst. I’d like to talk with you about using your blog posting as an article in an upcoming issue. Your take on this atrocity is the most well stated and well researched I’ve seen to date. Please e-mail me at catalyst@ccdionline.org.
Thanks!
January 7th, 2007 09:54
Who is funding the “Ashley treatment?”
If the parents cannot afford to pay for carers to assist Ashley in their home, how can they afford what must be extremely costly medical “treatment” for Ashley?
If the family is not picking up the medical bill, who is? Insurance? The hospital? How is it that there seems to be funding available for such extreme and experimental medical procedures for Ashley, but no funds for in-home care?
So far, I haven’t found media attention directed to this aspect of the case. Yet the answers to these questions have everything to do with understanding the range of interests being served and the players involved in the carving up and redesigning of this young girl’s body.
Best,
January 7th, 2007 14:29
I cannot believe what is described is legal! Where are child protective services? Where, for cripe’s sake, are the people who did sit- down strikes on behalf of Terri Schiavo, who was less aware and far closer to death than Ashley?
Intentionally maiming someone for one’s own convenience is a case begging for the ACLU’s intervention, or anyone else’s. I suppose Ashley’s tale is the bottom of the slippery slope the top of which was that for years, people with mental retardation were involuntarily sterilized by their parents or doctors.
January 7th, 2007 14:45
I’d like to add that I just visited the Ashley Treatment Blog. This child is simply a guinea pig for bizarre experiments. The parents’ rationalizations are the sickest thing I’ve read in years — to these self-deluding people, their little girl has “no need” of certain body parts. And hey, “This treatment [attenuating growth] was performed on teenage girls starting in the 60’s and 70’s, when it wasn’t desirable for girls to be tall, with no negative or long-term side effects.” Thanks for pointing this out, Mary. Very disturbing indeed.
January 7th, 2007 19:08
Umm…Terri Schiavo wasn’t any more “closer to death” than Ashley.
She was murdered by judicial fiat, and Ashley is a victim of child abuse. Incredibly, people justify both because of their prejudices against the disabled.
January 7th, 2007 19:36
As the parent of a severely (physically and mentally) disabled 29-year-old child I can quite understand the trauma that Ashley’s parents go through day after day. My son is full-grown but has the abilities of a six-month-old. My husband and I are both in our fifties. It is now very difficult to lift our child from his bed to his wheelchair and back. Apart from constant back-pain that we suffer, there is the feeling of guilt that we may not be doing enough. Or that our other two children may not begetting the attention they deserve. Or (given our cultural background) perhaps that we may have done something terrible in our past life — some sins for which the child is paying the price. Survival over the last three decades has not been easy. One has to shut out all such thoughts and simply carry on. Sometimes I wish my son had not grown to his present size. If he had remained a baby in physical terms he would have been easy to carry around. The backbone would not complain then. I could put him in a carry-cot and attend to him better. I wouldn’t be at the mercy of unreliable care-givers. Nor would I need to lock him up alone in the house when I leave for work. The sleepless nights when he is in pain, the repeated changing of diapers and bedsheets when they are soiled, the nagging thought of what happens to him after we are gone — only the parent of a disbled child would understand what I am talking about. It is very easy to talk of ethics when someone else is going through such an ordeal. Come to think of it, what is ethical and by whose standards? Come on, let’s get real!!
January 7th, 2007 21:15
[…] WIMN’s Voices examines the problem of disability and choice […]
January 7th, 2007 23:46
Two things: the treatment of Ashley horrifies me in ways that few things do. For those who say that I can’t judge the parents until I’ve walked in their shoes, I can honestly say that those shoes would never fit me. Shame on those parents for mutilating an otherwise healthy and beautiful child.
Second, I am amazed that the activist quoted above is from the UK. I visited there this past spring, and I’ve never seen such prejudice against disabled people anywhere. I was repeatedly pushed over while using the escalators in tube stations, refused entry to some attractions because it was felt that I would impede others in their attendance, and worst of all, many, many strangers came up to tell me that I had no right to be in public, that I should have stayed home out of the way and out of sight! My disability? I’ve a balance problem- my right leg doesn’t work well, my right arm curls and my face sags on the right side. I stutter at times. I use a quad cane and do almost everything a differently-abled person can do- when allowed to do so in my own time.
In the UK, I couldnt bring my service dog along with- the onlyu service animals allowed are leader dogs for the blind. My balance/seizure dog was prohibited from entering the country. I still did a lot of things, enjoyed my trip - and sometimes cried at night as I iced the day’s new bruises. I wish the activist group the best of luck- and doubt that things will change much over there.
January 8th, 2007 07:15
Thank you, Manju Jaidka, for your comment above.
You write,
This, of course, is the issue that parents like you face, and I am sure that the “it’s not ethical!” comments you’re reading strike you as horridly naive and simplistic.
What I would like to hear more about, from you and from other readers of this blog who actually have experience living with severely disabled people, is: what could be done to provide you with an ideal situation for your family and your son? I think until we really envision what’s needed, in specific terms, we won’t move forward as a society. So tell us what, rather than what’s been done to Ashley, would be your dream scenario?
I also hope those of you reading this who yourselves have severe disabilities — who need help dressing, bathing, etc. — can weigh in on this discussion. You are the experts in this — not the doctors and ethicists. What should we as a society be doing?
And where are reporters and editors missing the boat? Are they reporting on the problems such families face? Are they digging into the reasons why public policy is so woefully remiss in dealing with this social tinderbox?
January 8th, 2007 08:35
If I have survived over the last decades it is only because I have hardened a part of my mind, consciously stopped myself from thinking, never compared my child with other ‘normal’ kids of his age. Sure, I could talk about it, I could write about it, but it only makes me more aware of what might have been and I end up pitying myself — something I avoid as much as possible. This is a survival strategy. One needs to remain sane in order to look after a handicapped child. I have tried to give my two other daughters as normal a childhood as possible, so that they grow up without any chip on their shoulder. It has been tough but not impossible. I have a career that I love; it takes me places and has given me some amount of recognition. But wherever I go, I wish I could share some of it with my child who can never leave his bed. Had he been small — pocket-sized — I’d carry him around like a lucky mascot. But this is not to be. So I ‘deaden’ a part of myself and carry on mechanically. Which, I think, is what most parents in my situation do. What would you do Ms Johnson?
January 8th, 2007 17:09
Manju,
I hear of more and more parents of disabled people are being left with what seem to be impossible choices, and it sounds as though you do not see any real choice in the situation of your son and yourself.
If you had real choice in the matter, how`would you want to see your son’s life improved? Would it call for affordable, quality in-home support services, personal mobility options, accessible transportation, personal assistance, other? What would it take to set up an effective social support system for your son and family?
It’s too late to reverse Ashley’s treatment, the surgical removal of internal organs, the altering of her body form and shape. Perhaps one of the better things we can hope to draw from this case though is the chance to hear from mothers such as yourself and other families of disabled children and people who have been similarly neglected and left to their own devices. Best,
January 8th, 2007 18:55
Sharon
I am located in India. I think you folks in the US are luckier in some ways because you have greater facilities, more support services. When my son was born we were, in a way, discouraged from making too much of effort to ‘normalise’ him as the doctors felt he would have a very short life-span. We were advised not to place him in a home as ‘the worst of homes are better than the best of institutions’. He has been taken care of the best way possible, kept away from infections, and has survived these 29 years.
There isn’t much that can be done for him in our country. Even doctors aren’t of much help as they are trained in ‘normal’ cases. So it is by trial and error that we tend to him. I have a day care help who takes charge when I go to work. And when I travel she stays overnight. A good lady, she too has been complaining of back problem lately (not surprising, as the child has to be rolled over, lifted, moved around from time to time).
Ideally, I would like such cases to be taken care of by GOOD professional institutions staffed by dedicated workers. But where would you find such facilities? Not in my country.
With a child like this life gets-reoriented differently. All our activities focus around him. He can’t be left alone for more than a couple of hours at a time as hit toilet needs are to be taken care of. If we have a pet in the house the child has to be protected from him — for how would he shoo away the dog who wants to sniff curiously at his soiled sheets?
Interpersonal relations, of course, have to be worked at all the time. And career matters are to be protected. I avoid talking about my child in my office for that would be considered ‘unprofessional’. If I have to take leave I never give personal reasons because they would not understand.
More than anything else, it is the pity of the outsider that is hard to handle. In my country people love to feel sorry for a bird with one wing down. And my self-respect does not accept that. My attitude is — ok, it is my problem, I will deal with it, you keep out!
Lately, however, with the nagging back-pain, I have been thinking of talking to someone about it. But I am not sure before whom should I let my defences down. But, anyway, thank you for your patience.
January 8th, 2007 23:53
Manju, as the director of Women In Media & News and as the organizer of this blog, I just want to thank you for expressing your deeply-felt thoughts on this topic, and sharing with us what you have said is hard for you to speak about in general with those you know and trust. WIMN’s Voices raises the issues we raise about media coverage of women in relation to so many different social and political issues because we want to encourage dialog about the impact of media in our lives. I very much value you adding your voice to this conversation — it deepens the conversation for all of us. Thank you.
You’ve mentioned that in your country, support services are not as viable for an adult disabled child as they might be in the U.S.; I am wondering if you have any thoughts on how media treat the subject of disability in your country. I know that here, if reporting was more full, if people with disabilities and disability rights advocates were featured more as experts and sources on the stories about their own lives, we in the general public might have a better ability to understand what families like Ashley’s here, and families like yours throughout the world, must live through. And, one imagines, public policy might improve with broader public awareness and understanding of the daily realities of those who are disabled as well as those who are their caretakers.
January 9th, 2007 04:44
This is hard, Jennifer. I get a lump in my throat and my eyes burn when I start to write about it. But I will put my thoughts together and get back to you sometime.
January 9th, 2007 04:44
Doctors who often tell patients that they have only a certain number of years to live or that they will never be able to communicate or that they will never walk, the list of medical prophesies is endless but patients have proved the “almighty scientists” wrong MANY, many times over. It begs the question just how much is their personal opinion and how much is “expert” opinion. Medical prophesising should be against the law. Some patients turn to so-called faith healers and think that these ‘healers’ have kept them going.
I don’t doubt that the doctors have had a profound influence on the decision made by these parents. The truth is, no one knows what is going on inside that little girls head. We might suppose that Stephen Hawkin had the mind of a 3 month old baby if it weren’t for the fact that technology has provided a means of communication for him.
The child is just nine years of age and no one can say how or when or if ever Ashley will progress in some way. Human-beings have unique ways of surprising us even when life may appear to be astray.
What is equally disturbing is that Ashleys parents seem to ‘expect’ sexual abuse to occur and by preventing her breasts from developing they appear to think they are de-sexualising Ashley or reducing the risk of “inviting the possibility of abuse” as her Mom and Dad put it in their blog,
It is in a sense condoning the abuse, as though peoples’ most basic sexual urges (particularly in men) can not be controlled. So sexual assault becomes more acceptable rather than reviled? Instead are we to be seen as responsible by making females take responsibility for the abuse they ‘must’ expect and accept? Sorry but have they never heard of paedophiles? It seems to me that this issue is also a feminist issue as well as a ethical and disability issue.
So, Ashley is nine years of age. Children with these conditions don’t usually live beyond five so already she has defied medical science as many other children have with the same condition before her and have no pre-planning involved. I don’t doubt that we ALL have much more to learn about human-kind from people with disabilities.
“A world in which government cannot be bothered to investigate potential illegal medical assault on its citizens, in which those with no authority feel free to make decisions which are blatantly against the law and to carry out serious and irreversible procedures on those with little or no capacity to give or withhold consent, is a world in which people with disabilities can have no certainty or confidence about their human being or their future.”…..Elizabeth Hastings in her statement as Federal Disability Discrimination Commissioner in 1998
January 9th, 2007 05:10
Dale Smith writes:
“What is equally disturbing is that Ashleys parents seem to ‘expect’ sexual abuse to occur and by preventing her breasts from developing they appear to think they are de-sexualising Ashley or reducing the risk of “inviting the possibility of abuse” as her Mom and Dad put it in their blog…”
Mr Smith, there was a time when I too, like you, thought that parents got their challenged daughters operated upon to de-sex them and make them “sexually available” (ouch! how crass that sounds!) to predators in the guise of men. With time, however, observing the traumas of parents with female retarded kids, I realised that was not the reason.
Do you know what it is like to handle menstrual problems? Do you have any idea of how even normal young girls find it difficult to cope with their monthly cyccle? And if the girls are innocent as well as “mindless” what would you expect? Would you expect them to keep the sanitary napkin in place and change it when need be?
Visualise yourself in the position of a mother with such a hapless daughter. Imagine yourself doing the things she does. With your noble concern for preventing ‘abuse’ of such children, would you check every half hour or so to see the napkin was in place? To see that there was no overflow of menstrual blood? To see that the child had not, out of curiosity, taken out the soaked item and played around with it? Or that she had not stained her clothes or the sheets? And if she did, would you discreetly change them and scrub out the stains from the clothes? And would you do all this month after month, year after year?
Your concern with ethics of child-raising would surely be appreciated if you actually offered to render such services at an institution which looks after such children. Would you do all this, Mr Smith? Or would you just sit at your computer and pontificate on ethics and morality and child abuse?
Lofty ideals are all very good, but ultimately all ladders rest on solid ground! On reality! The foul rag and bone shop, as WB Yeats called it.
January 9th, 2007 06:15
I have a lot of thoughts about what would make even the contemplation of the Ashley treatment unnecessary for parents in the US (above and beyond the fact that it is, in this mother’s view, child abuse). Haven’t yet got the thoughts together for a final draft.
However, in terms of media, I think one of the most *basic* things that is done to perpetuate the misunderstanding of what disability truly is is the use of words like “suffers from”. Has bugged me for 18 years, since my son who *has* CP was born. He doesn’t “suffer” from CP. He’s not “afflicted” with a disability. He is an amazing, funny, charming 18 y/o who happens to have the motor skills of an infant and an unquantified intellect (because let’s face it, giving an IQ test to a nonverbal, visually impaired person who has essentially no motor skills is fruitless - yet it’s much easier to label my son as profoundly mentally retarded in addition to all the other labels than acknowledge that *no one knows* what his intellect is because the testing process is disabled). He also loves The Sopranos, rap and grunge music, and has a totally age-appropriate adoration of all females. Disability does not define a person - the person defines the disability. Caretakers of people w/ disabilities are not noble. People w/ disabilities are not to be pitied. Yet… there’s a slightly condescending tone in most stories about disability - any accomplishment is that much more impressive because of the disability, any struggle is that much more difficult because of disability.
January 9th, 2007 07:41
Thanks to all of you who have commented on this very wrenching issue.
Since this blog is devoted to how media covers — or does not cover — issues, I’d really like to get your thoughts on ways in which reporters could cover the issues you’re raising.
Can news coverage of this issue change anything in society? If you think that’s possible, how do you think it might be done?
If not, why not?
I also hope those of you involved in media will weigh in on this topic.
January 9th, 2007 10:29
I’ve just posted a new blog entry here about statements and action alerts that some U.S. disability groups have issued on the “Ashley Treatment.” I mentioned in that posting that so far, media seemed to be paying no attention to these responses.
I’ve just done a quick google news search — when I enter “Ashley Treatment” I get over a thousand “hits”; when I adding the phrase “disability rights” yields fewer than 10 hits.
And the stories that continue to appear — the latest via google news was from TIME — are still quoting — you guessed it! — doctors and bioethicists. But a closer reading reveals that, in fact, the TIME piece does quote the Disability Rights Education and Defense Fund as well. I’ll gladly go make a change to my post!
January 9th, 2007 11:35
[…] In the wake of the wave of worldwide news coverage and commentary on the decision of a Seattle couple to have doctors perform a series of operations to stunt the growth of their 9-year-old daughter to ensure she’d be easier to manage in coming years, U.S. disability groups began issuing statements denouncing the procedure and calling for action against Seattle Children’s Hospital. […]
January 11th, 2007 04:54
Am Asudanese working in one of the GCC countries.I got a very beatutiful boy in 1993, but he was born braindamaged. He very much looks like Ashley when she was youg, and he has the same smile she has now. Iam taking care of him now, because the rest of the family is in Sudan, and Idon’t trust any body to take care of him during my absence. He is flobby , he cannot sit his big eyes is always are looking into the blank, Idon’t know whether he is fully sigghted or blind. Ican’t speak about him, because I can’t fight back my emotions when do that. His mother is stronger she coukld speake about him boldly. Any way Jacob(better known as Israel) the father of Joseph, wept when he lost his beloved Josef until he lost his sight. I think Ashley’s parents has every right to decide for her to be able to take care of her . Those who are righting about ethics in this case know nothing about the painful suffering of the parents of such disabled kids!
January 11th, 2007 09:11
Referring to Mary’s and Jennifer’s posting above, let me give you an example of how effective the media can be – how effective it has been in my country. The case I refer to has nothing to do with the disabled but with the abuse of money and power to inflict a heinous crime on a young woman.
I wonder if you have heard of the Jessica Lal case. Serving at a bar, she refused to serve drinks to an inebriated young man from an influential family. The young man pulled out a pistol and shot her dead. There were witnesses aplenty but, thanks to money and political power, they all disappeared or turned hostile and the accused went scot-free. Until the media took up Jessica’s case, held candle-light vigils, and started a nation-wide sms campaign “Justice for Jessica” and forced the powers that be to open up her case again. The entire country was glued to the TV for days and finally the verdict was given, and the accused awarded life sentence.
Another such case followed in its wake – the murderer of another young woman, who had managed to evade justice for many years, was finally nabbed.
These two cases, that occurred within the last few weeks, prove that the media, if it is committed, has the power to achieve what the man in the street cannot.
Speaking of the disabled, the media in the first place needs to be enlightened and open-minded, ready to shrug of its complacencies and face bare facts. There are no hard and fast rules governing people’s lives, especially not the lives of the disabled. As the earlier comments of parents make evident, each handicapped child is unique. He / she has special needs that cannot be labeled and categorized. So, what may be good for my child may not be good for another’s. How, then, can one frame a common set of rules and regulations?
For the same reason, how can one impose rules that, even by normal standards, have long since become obsolete? The concept of morality, for instance. Or of ethics. I repeat the question I posed earlier – what is ethical and who decides it? Is it ethical to allow a soul to be trapped in a body with no windows? Is it ethical to force parents to carry a cross that gets heavier year after year for the rest of their lives? Until they forget to smile? Until old age slows them down? Until their vision blurs and their legs totter and their backs give way?
Only a sadist would want that!
The media needs to be fully acquainted with the complexities of the issue. Only then can it do something about it. Abstract ideas of morality and ethics are irrelevant when dealing with the matter. One needs to be practical and down-to-earth, assess the problem of the child, the responsibility and pain of the parents, and what can be done to help them. Forget all big talk and armchair support – a different kind of help, physical, monetary and emotional, is needed. Not just for a day or two but on a permanent basis. Institutions, social workers, care-givers, philanthropists need to come forward and actually volunteer to lend a hand.
This is what the media can do – focus on families that actually go through the pain and tell the public that high-sounding talk of ethics will not suffice – something needs to be done about it. Will all those who care come forward?
January 11th, 2007 16:03
[…] My earlier blog postings (here and here) questioned whether reporters would move beyond their typical sources — doctors and bioethicists — to cover the disability rights community’s reaction. That’s now happening. Stay tuned for more. […]
January 11th, 2007 16:15
Manju Jaidka writes, in her comment, above,
Exactly! Now the question becomes, for me, “what kinds of stories will force social change?” Can reporters still influence social change? Can they influence social change in this area?
I’d love to hear from reporters on this issue.
January 12th, 2007 03:13
Hello Manju Jaidka,
in reply to your questions: Yes, I know what’s it’s like handling menstrual problems and how difficult it is to cope with mentrual cylces.
Sexual predators come in both male and female form, NOT always in the guise of men.
January 12th, 2007 21:35
Update: Today a google news search under “ashley treatment disability rights” yields 178 hits.
January 15th, 2007 12:26
Hi Mary, you raise several important issues here.
One, why did the media fail to consult disabled women when presenting stories on the Ashley Treatment? One answer, I believe, is that People With Disabilities are the invisible man today. Today, when someone claims their Civil Rights were violated due to race, the media immediately consults with leading civil rights advocates (race of course), but back in the 1940’s and 1950’s, media certainly didn’t consult with civil rights advocates, they were considered the “problem.” A great book was writen, the Invisible Man, and I believe we in the Disability community could learn a lot from the Civil Rights Movement finally led my Martin Luther King.
You also rais the issue of male vs female. Would this have been done if Ashley were a boy. I fear the answer to this question would be yes. Especially if the child was mobile and might be able to get to a female whom he could abuse.
Then the issue of smaller is tollerable, or “What a cute kitten!” followed up by, “:No, you can’t keep that kitten, it will grow up to be a cat!” Back in the day, when my Great Grandmother was “deemed to be “senile” (now I realize she wasn’t) we used to care for our disabled elders in our own homes. My great Grandmorther was a tall hard woman, who bacame a “burden” due to loss of ability to care for herself. There was much family talk about this, but when I was 10 years old, during summer vacations, I was sent to live with my Grandmother, who was caring for great Grandmother. It was to me that her care fell during summers. What I learned from this was a great respect for her plight. I discovered that contrary to medical “opinion” she had a fdine memory, and a sharp toungue, which she used to voice her own opinions. She had already grown large, and although had passed her childbearing age, could certainly have been at rish for sexual assault. no one suggested amputating her breasts, which were huge, and hung “way down”, and which surgery surely would have made it easier for me to care for her. Nor did anyone suggest installing a urin bag, so she couldn’t save up her urin, pea in a cup, mix it with her dusting powder, and use ot to seal her room shut from us, her abusers!!
I have held my toungue, while I listened to all the Ashley talk develope, but your post has really raised my hackles.
Looking back, now, on those long hot summers, I no longer feel the burden part of it, but instead draw on all the lessons I learned for her, and from her care.
January 16th, 2007 09:12
I would like to make just two observations:
One, that there is a lot to be said for the good old ‘joint family’ when it comes to looking after an invalid: the support system that it provides helps one tide over difficult times and makes the task of care-giving becomes bearable when shared.
Two, that caring for the aged is different from caring for a disabled child. The aged are simply marking time as they slip away into ‘that good night’ which is not as much of a trauma as caring for a disabled child who will grow bigger and heavier and more difficult to handle and whose parents will constantly be faced with the question — “what after us? Who will look after hem / her?”
Again, I repeat, there are no fixed rules and each case is different. Only the care-giver knows what is best in a particular case. Like they say only the wearer knows where the shoe pinches. So why be judgemental?
January 17th, 2007 12:44
aging parents do not all develop disabilities. Seniors with disabilities often suffer the most heineous discrimination, and even do not get the proper tests ordered. It was once thought that it was “normal” to become “demented” when one became old.
Of coures, a child is not the same as an adult. However, caring for a disabled parent for thirty years is caring for a LARGE and heavy body. just because the disability started later in life does not make it any less of a disability. The point I was making was that size and weight are “problems” that are dealt with when an adult becomes disabled, and I have never even heard of amputation as a solution. The adult I was describing was clearly not sliding into death, but disabled and undiagnosed. It was assumed, incorrectly, that she was “senile.”
I believe that women with disabilities have a right to a correct diagnosis. It should not be assumed they are “crazy,” “lazy,” or “senile.”
Don’t know your age, but do not go gently into that good night.
February 16th, 2007 11:59
Thank you for discussing this. The gender politics, as evidenced in that blog piece you excerpted, and how they figure into the discourse about disability, are so important. This is just a shocking case.
July 6th, 2007 12:09
WOW the first blog post I have read this week that I can relate to