More on Ashley.
OK. Time to get over the shock and write. Pulling self together. This is in reference to my post below.
One justification for this is that Ashley's parents will be able to cuddle her more and take her on trips. A second claims that Ashley has the cognitive developmental level of a three month old.
These things don't make much rational sense to me. A three month old child appreciates physical attention, but that attention does not have to be holding in one's arms, right? It can be physical touch of all kinds, right? Stroking? Massage? So, the idea of holding is a "convenience" for the parents.
Ashley's parents seem stuck on the idea of lifting her. Many PWD are heavier/larger/ more fragile than their PCAs/family members can manage to lift. Technology helps. It's not perfect. It's not easy. But not being able to be lifted does not prohibit a disabled person's access to life. Doctors predict that Ashley will max out at about 125 lbs. What are we talking about here? She will be 5'6". This is unbelievable.
Ashley's parents put her through mastectomies to remove the "buds" of her early pubescent breasts. They were afraid of the impact of her fertility. What impact? What effect does becoming fertile have? The justification is: "With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably."
I don't know where to begin. How do breasts stop you from lying comfortably? Do breasts actively contribute to bed sores? I mean is there medical evidence that suggests disabled women are more susceptible to bed sores because of their hormones? And, if there is, does that mean that we should all consider hysterectomies as a preventative measure. It seems to me that this is one of those moments where disability history intersects strongly with feminist history. This is not about Ashley's femininity per se; it's about her parents' fear of her potential sexuality. Feminism has surfaced the miserable history of hysterectomies; why can't disabled women have access to the same rights as other women?
As for bed sores -- does anyone even use that phrase anymore?. Well. Surely devoted parents like these will care for Ashley. See that she is turned and that her skin is taken care of? Besides, I thought she was so often in her parents' arms that she had no opportunity to develop this kind of issue. Pressure sores are not 100% preventable, but good care and early intervention works wonders.
This is simple fear of disabled life. And look: here's that old war-horse stereotype: "Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write." That's right. The cognitively-impaired among us have no interior life. That's all disabled people do; stare at the ceiling. And as for staring at the TV. Do we know that Ashley, as a 3 month year old, has no appreciation of the tv?
These medical interventions stretch the definition of "treatment" beyond acceptable bounds. This is not "treatment." This is medical experimentation. Involuntary interventions. And the idea that the brutal mutilation of a disabled person can gain medical approval should rally us all.
Ashley's parents are in a difficult spot. As they and many other parents of disabled children know, caring for a significantly disabled child creates a different set of challenges, many of which are not easy. It can be a big and overwhelming life project. But these are "college educated professionals" (clearly, they did not take classes in disability studies). Their educational background and professional occupations make them members of the (upper?) middle class; they have the resources, the societal know-how to be able to interface with the many governmental agencies through which care and support can be accessed. Instead, they used their privilege to go to the "top" of the medical system to devise a course of action that effectively prohibits the adult personhood of their daughter. In the name of efficiency. In the name of ... god knows what. Anything but humanity.
19 comments:
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.
I don't doubt that the doctors have had a profound influence on the decision made by these parents.
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.
"The road to hell is paved with good intentions"
This is horrifying. I too read the Guardian article yesterday. It makes me feel sick that parents and doctors can justify such barbaric mutilation for such spurious reasons. I have just read the discussion on the BBC site about this story. I was shocked to read that almost all the comments backed the parents. So I did a blog search, hoping to read some sense from someone's disability blog and found this blog. You have articulated so well the reasons why this is wrong.
This child deserves to have her human rights protected, and not this.
I'm a parent, my son is on the verge of adolescence, and getting more and more difficult to lift, so I should understand, but I don't--I really don't. Beyond the good points you make, I just keep thinking, "major surgeries to remove healthy tissue and organs???" I can't imagine consenting to that on his behalf, let alone requesting and arranging it. Even necessary minor surgeries are extremely stressful to anticipate and endure, and carry real risks.
He's getting harder to lift, so... we're working on getting and staying stronger. We're rethinking how we use the space in our home. We're investing in the right support equipment for him. We understand that we may need to hire someone to help us with him at home. But no matter what course we take, his body is his.
http://ashleytreatment.spaces.live.com/
Here is the link
i think everyone would do well to read that blog actually. I must admit I have different thoughts about this than most people on this blog or elsewhere.
The fact of the matter is this is not being done to males in a similar position. I their arguments about removing breasts are ridiculous.
far be it from me to be flippant, however, men don't have breasts.
I am speaking somewhat from my own experience though, because my spasticity as a result of an acquired SCI was so severe, impairing day to day functioning, that I ended up having an "engineered", higher, more complete injury to let myself be in a wheelchair at least. So I'm well semi acquainted with the kind of decision making Ashley's parents pursued.
RachelsTavern,
Yes, I agree. Can you imagine what people would be saying if doctors had even so much as suggested removing or altering sexualized parts of a male body? "Well, if it doesn't dangle, maybe carers won't be tempted to play with it!"
Yes, abuse is real. No, that's not how you deal with it, for Christ's sake!
I think these parents are disgusting. This is a CHILD. How DARE they take away from her just to make it easier on themselves. They are thinking only of themselves (and maybe the media attention). You choose to have a child -- it is YOUR responsibility to raise YOUR child. What is nest?... Oops we wantsed a boy, not a girl... Change it???
Has anyone asked if the mother was on drugs or abusing alcohol while carrying Ashley??
I can't help but remember all that was said about Terri Shivo. The hopeful said that she was capable of far more that "Doctors" or "experts" said she was. They said she smiled, laughed and responded to questions.
However, when an autopsy was done it was found that her brain was utterly destroyed. Her behavior, which so many hung their hats on, was just the random behaviors of a mindless body.
Hope is a double edged sword. For those who can act on it, its the only light in the dark. For those who can't, it is cruelty beyound endurance.
They are denying the child-a fellow human being the right to live, the right to be as normal as she can be-her right to be human.It is inhumane to change the course of nature,and eridicate all hope for miricles.Many a time, doctors have prophesized the life span of patients,proclaiming that there is nothing modern medical technology can do for them.However many have lived past the prophezied time nd lived life to the fullest.Asley x once had a hope.But now it no more.
Dear Lemon Sherbet,
It’s a lot to ask a family to construct their lives like a miracle is on order. It’s also a lot to ask a family to ignore the day to day needs of their child, and their ability to meet those needs.
I think what is being asked of this family by the disabled community is the opposite, and therefore equal, of what the disabled community has rightly complained of for years. While disabled people are asked to live as if there was no hope, accepting their “incapacity”, these parents are being asked to live as their child is not as she clearly is.
Maybe we should leave these folks alone, and allow them to construct lives the best they can without imposing our philosophies on them?
Anon.
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