Last Updated: Friday - 09/24/2010
Week of January 29, 2007
L'Arche queries 'Ashley treatment'
Parents take drastic steps to keep their disabled daughter at home
By L'Arche Canada
In the past several days much media attention has been given to the case of a nine-year old Seattle girl named Ashley who was born with static encephalopathy and unable to develop intellectually beyond the age of three months.
Her parents, with the support of doctors and ethicists, opted for surgical intervention and hormonal treatments that will keep her small and prevent her from growing into an adult woman.
Her uterus and breast buds have been removed and estrogen injections are ensuring she will remain for her lifetime around her present weight of 75 pounds.
Ashley's parents explain their primary concern in this decision was Ashley's comfort and quality of life, especially as she grew heavier and it would no longer be possible for them to care for her themselves at home.
It is difficult to sympathize with the ethicists and medical doctors who are now promoting the so-called "Ashley treatment." Ashley's case does not exist in isolation from human society, and it raises profound ethical and social questions.
With the possibility of "designer babies" already on the horizon, it should call us to a much more rigorous public conversation about values and where there is and where there is not a place for medical or surgical interventions.
Alarmingly, even before these questions have fully surfaced for discussion other parents are seeking this treatment for their children with severe disabilities.
The term "slippery slope" is often dismissed as fear-mongering, but the fact is that a medical and ethical precedent has been set. We cannot measure the loss to the quality of our humanity as a society that will result from such manipulation of human life and growth.
Also, the implications of condoning the permanent infantilization of a person with a disability are of grave concern with regard to the safety and respect for the dignity of other people born with significant disabilities.
People with disabilities have fought hard to change the cultural images which portray them as childlike and passive - images that only serve to further limit their options for friendship and work and to be contributing citizens. This "treatment," if it comes to be regarded as acceptable, will only reinforce these inaccurate and demeaning stereotypes.
For the family of a child with an intellectual disability there are usually three broad concerns that will determine the extent to which he or she is able to live the fullest life possible: (1) The quality of care and community around the child. (2) The cost of caregivers and practical and technical supports the child will need. (3) The suffering they fear may befall their family member as he or she grows to adulthood without the full range of abilities and mental facility of other adults. Fear that their child will suffer can cause families to limit their children's options.
Ashley's parents, who have resolved to keep Ashley at home for their lifetime, clearly had in mind all three of these concerns in making their decision.
At one point in their blog the parents explain, "We tried hard and found it impossible to find qualified, trustworthy and affordable care providers."
The medical ethics of this case and the fact that there are other care-giving alternatives aside, this comment strikes at the heart of the pressing need for adequate funding for people with intellectual disabilities. This too is an ethical situation for which we must take responsibility as a society.
The challenges parents of children with special needs face are often hidden. Along with the everyday joys of living with their child, many engage in a wearing struggle for financial assistance to provide the care and support that their child needs, and usually they do this with great devotion and enormous self-sacrifice.
As children develop, there are other living options. The experience of L'Arche over 40 years in hundreds of situations around the world is that people with a wide range of intellectual and, often as well, physical impairment, can grow to adulthood, flourish, and nurture those around them. For this to happen we need to accept that vulnerability, limitations and even suffering are part of life and growth.
Take Karin (not her real name) for instance, whose needs for life-long total care are similar to Ashley's and who moved into L'Arche from a nursing home in her early teens.
Karin is able to do nothing for herself and receives her food from a tube, but she has grown into a beautiful young woman. Lifts, a special wheelchair and a wheelchair van, and people around her who are attentive to her need to move frequently and to be well-cared for physically, enable her participation in her household and in the wider community.
She has genuine friends who like to spend time with her, and she is a member of a dance troupe. Her presence on stage is captivating as she twirls in her wheelchair with her partner. Through her smile and facial expressions Karin seems to convey the full range of human emotions, from love and compassion to fear and anger.
One wonders if Karin would be able to do this had she been denied the opportunity to go through puberty. L'Arche is by no means alone among good services for people such as Ashley and Karin.
We need each other
We have a tendency as a society to deny aging and to hide from the reality that we are ultimately powerless and quite fragile beings who need each other. Our lives are a remarkable gift entrusted to us and to others for an uncertain number of years. The person with a severe physical or intellectual disability is put more at risk in a society that is not rooted in awe before the mystery of life itself.
Ashley's parents' blog is at: ashleytreatment.spaces.live.com/blog/
(L'Arche Canada is the umbrella organization of L'Arche communities in Canada and provides a link to L'Arche International.)
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