Friday, February 5, 2010

Longitudinal Wisdom

Thanks to Bill Peace, I was given access to a number of rejoinders to "Ashley Revisited: A Response to Critics", an article by Fost and Diekema in AJOB (American Journal of Bioethics).

The responses were great...some things in particular stood out for me. The following paragraph is taken from AJOB, written by Sara Goering, entitled "Revisiting the Relevance of the Social Model of Disability" (AJOB 10: 1 54-55, 12 January 2010). It struck a chord. I hope it speaks to you.

I recently participated in a working group on the ethics of growth attenuation, and I was struck by the comments of the parents of children, now grown, who share the kinds of levels and impairments Ashley has. These parents shared stories on how their children had matured, in multiple ways, including preferences, and styles of interaction (see, e.g., Kittay and Kittay, 2007), despite the official medical prognosis that they would remain at the cognitive level of a six month old. Their reports demonstrate how even children with profound impairments develop over time and how rewarding it can be for parents to observe their children blossoming in their own ways, as their bodies and minds mature. Parents who are new to a child living with profound impairment will not have this longitudinal wisdom, and yet they would need to make decisions about growth attenuation quite early if it is to be effective.

There are two things in particular I want to address from this quote: the "longitudinal wisdom" of parents and the issue of cognition. The first I will address in this post, the latter, in another.

On Ashley's parents' site, it has been written that parents should receive "anticipatory guidance" for g.a. for their children at three years of age. It is believed that the "most benefit" would be achieved if the "treatment" begins as early as possible.

Three years into life with a child who has severe and multiple challenges is very early on in the game for parents, psychologically speaking. It took me at least two years to face the facts of my daughter's issues and several more to come to terms with the whole thing completely. Some parents may catch on sooner...some never do. The hospital setting, though, where our children spend an inordinate amount of time, is not conducive to hopeful or even balanced thinking about the realities of long term care. Indeed, the first few years of life are usually the most fraught with problems issuing directly from the child's disabilities. Parents have to jump from one hurdle to another, and are frequently faced with sudden and inexplicable changes in patterns of behaviour or health in their child. It is difficult, under these circumstances, to find the sort of mental space it takes to look at the big picture and imagine the many possibilities for the future.

In other words, within the context of the medical environment and the many challenges arising from the child's disabilities, g.a. can look like an attractive option, particularly if it is enthusiastically presented by so called "professionals" in the medical field. It is typical for these individuals to focus on the negative aspects of care, the costs financial, psychological and social, the physical burden and the suffering of the child. Indeed, Goering makes the following point:

My concern is rather that the people who will be making decisions about whether or not growth attenuation is appropriate may have no broader, non medical understanding of disability. If they all see the problem as primarily a medical one, the medical remedy will likely make the most sense. But awareness of a broader movement to change social norms, to ensure provision of high-quality car for people with impairments who will need long-term care, and to learn to respect individuals of all kinds as they are may alter their thinking. (p.55)

Parents of young children with severe and multiple challenges need to be in touch with other parents with grown children in a similar situation. I am lucky to have made these sorts of connections online via the blog...but it needs to be worked into hospital policy that parents seek out some sort of outside guidance before proceeding with decisions regarding g.a. This supposedly has been set up at the hospital where the "treatment" originated...but is that so elsewhere, where Ashley's parents claim the "treatment" has been carried out?

Truth be told, ladies and gentlemen, I have yet to meet a parent of a growing or grown child with any sort of challenge who finds this "treatment option" to be anything but appalling. Mind you, I certainly don't attract opposition in this regard with my views!! We love our kids as they are...and see them as whole individuals due the respect and protection any other child or adult would receive in society. We are never in denial of their physical or cognitive challenges, nor of their sufferings. We don't sing the praises of dirty diapers, flowing body fluids, medical bills or our own aching muscles. But...damn it...those kids are special and we love them so much! And we love them as we love our "typical" children, if we are so lucky as to have one or more of those as well. There's no difference there. The Ashley "treatment" is an assault on this integral whole that is the individual born to us. My daughter's life is not a "dilemma" that requires a "new solution". She is a person who requires assistance to get on with her life. That is my job...it is the job of parents...and it is the job of an enlightened society to help in that.

At the end of the day, perhaps some well-informed parents may see growth attenuation as a reasonable opton for their families, even as a way of respecting their child by doing what they can to include her as long s possible in family outings and in the family home. But many others will come to believe that respecting their child involves accepting her as she is, and working passionately with others to ensure that her needs are met and her flourishing is made possible. (p.55)

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