Wednesday, November 17, 2010

Another Hasting article addressed

I will be commenting now on another article of the Hastings Centre report. This one is entitled "Against Fixing a Child--A Parent's View" by Sue Swenson (The Hasting Center Report > November-December 2010 (volume 40, number 6).

Obviously, this piece is more in tune with my views as it is opposed to the Ashley "treatment".

It is difficult to care for a son who is legally blind, quadriplegic, nonverbal, autistic, profoundly intellectually disabled, prone to seizures and sleep disturbances, six feet tall, and 190 pounds.

Indeed. Swenson sets the tone right away: she knows what this is all about, caring for a severely disabled child. This deflects typical criticism from those in support of g.a. that those of us who stand against it "don't know what it's like."

Though I had to read this piece a number of times to really get its focus, I think, in the end, Swenson succeeds in making her point most clear: community supports that assist in families in caring for high needs children allow for these individuals to live full, satisfying lives, as they are. Community supports allow for our children's human rights to be honoured by valuing them as people...people who are part of the community.

Family support—services whose aim is to help families nurture and enjoy their disabled child at home—helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.

Swenson is also quick to establish her view when it comes to the role of parents in decision making for their children:

Growth attenuation should be out of bounds unless it treats an underlying disorder. The human rights of the child as a person with disability should limit parental rights

Do I know what my child wants or will want?
Is there a supported decision-making process that gives me more to go on than my own interpretations? Who is protecting my child’s rights? Decisions that are made behind a parental privacy shield can be too easy for our own good.

I could not agree more. Gaining this perspective can be a difficult one for parents, however, when it is intended that g.a. be offered as an "option" to them when their children are as young as three years old. I might add that, it is not only the "parental privacy shield" that is of concern, but the "medical shield", that is, the very strong influence medical practionners have on parents who often feel overwhelmed with their childrens' issues, and have not yet had the chance to explore perspectives from outside the doctors biases.

Though I am happy to read anything from anyone that opposes g.a., there were a few areas where I felt the issues being presented were significantly unclear. In the following paragraph, Swenson describes her 28 year old son's living situation:

Home- and community-based supports are services offered to adults in places other than a family home, as the person’s needs and the family’s situation (and age) dictate. Last month, Charlie moved to a house (not a group home) with two roommates and staff. His community support workers are great. They support him; they do not control him. They are well trained, well supervised, and well managed. They are dedicated, friendly, and respectful.

Let me say that Swenson's son is lucky indeed! Would that such supports existed everywhere. One almost gets the impression that she takes this for granted. If this were indeed the case for most parents, I think the entire g.a. debate would be moot. It is possible, however, that she is simply emphasizing this point with personal experience: services like these make it possible for children with severe disabilities to live fully and happily without being subjected to drastic and unncessary physical alterations. SERVICES are THE answer to the "problems" perceived by those who would support g.a.

Another point that I had to mull over from Swenson's article is one of the questions she directs parents to ask themselves before making decisions that will affect their child's future.

What would I do if my child did not have disabilities?
Parents (and physicians) of children with disabilities do not always understand disability policy and culture. Interventions such as growth attenuation that are allowed only when a person has profound intellectual disabilities are especially difficult to justify.

Whereas I certainly understand and agree with the answer to the question, I didn't quite actually get the question itself at first. I mean, the fact is, you are in a dilemma precisely because your child is disabled. Life takes on an entirely new direction than the "standard". I suspect, though, that she is once again, pointing out a perspective about human rights: would you do this to a "normal" child? Why would you do it to a disabled child? What is it about disability that leads us to believe that we are allowed to compromise a child's physical integrity, thus violating their human rights? An excellent point.

Swenson's last q and a...

Am I driven by my own pride or ego? We are often put on the defensive about our sons’ and daughters’ dependence on public support. But support of vulnerable people is almost always recognized as a legitimate activity of government. It is easier to overcome the shame of public dependence when you try to be public-spirited. Disabled people, too, can live simply so that others may simply live.

I have to admit that there have been times when I felt uncomfortable with the fact that the world seemed to have to bend over backward to accommodate my child's very expensive needs. Swenson has a legitimate point to make here. I'm not entirely satisfied with the answer...and I really don't understand the last line at all. Perhaps someone could clarify it for me.

In any case, I am happy that Swenson stepped up to stand against the so-called Ashley "treatment", in support of the human rights of the severely disabled.

1 comment:

  1. Disabled people, too, can live simply so that others may simply live.

    Simple basic living is practically possible for disabled people. In other words she is trying to negate the argument that others need to foot the BIG expenses. Also implied in the last line is that, 'in the spirit of support for vulnerable people being legititmate' being taken care of, disabled people put less of a burden on family etc.

    I have to pause though at the statement,"The human rights of the child as a person with disability should limit parental rights".
    As with any statement, it may sound wonderful or atrocious based on where it is applied. Human rights as a concept rests fairly heavily on consent.
    It becomes grey when we ask ourselves do we limit a person's freedoms because we feel his actions, though stemming from his own formed ideas, will cause himself harm. In the case of non-communicative children how can we come up with an answer as to what is best for that child? Do they distinguish between non-communicative and non-responsive? Now we're really complicating matters!

    Parents are legal guardians over their children. They should not be knowingly allowed to bring harm to a child.

    Now a medical procedure is performed but on the non-existant ground of preventing difficulties in the future. Not, preventing the well-established risk of life threatening issues.

    The issue looks to me more and more one that should be in the sphere of pure medical ethics, it's already wrong THERE, no need to go further and look for an answer in human rights where there is a quagmire waiting to swallow you whole.