This language demonstrates more than ignorance of biology. It reduces Down syndrome to a medical condition rather than understanding people with Down syndrome as whole—emotional, physical, social, spiritual—persons. It further reveals assumptions that Down syndrome can be conflated with mental retardation, and assumptions that a cognitive delay is a disease that needs curing. Finally, it assumes that drugs are the best way to address cognitive delays, whereas other research demonstrates that children with Down syndrome have been socially conditioned to meet low expectations for their ability to learn.
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I would like to introduce myself. I am Steven Perez, the grandfather of a beautiful girl with CP. I also served 8 years as a member of the Association of Regional Center Agencies, and 3 years as president of the association. It is the association in California that represent the 22 Regional Center Agencies that provides $3.6 billion that purchase support service for consumers. I want you to know that I am not sure I agree with you but you do have me thinking very seriously about your conclusion. It maybe that we face a different situation. But I thank you for a very thoughtful article. Pastor Steven V. Perez
Steve,
Thanks so much for your thoughts and for sharing from your personal experience. I'm curious where your questions lie as far as my conclusions. I'm certainly open to correction, as my own thoughts are also in process.
Thanks,
Amy Julia
As an ardent student of medical history and a clinician who treats mostly people with special needs, I can only say that all treatments, curative or otherwise, may have unintended consequences. A recent example of this comes with parenteral treatments for rheumatoid arthritis, which greatly suppress immune protection and will increase the chances of malignancy.
I would agree with your estimation of how the whole person concept makes for a difficult and wonderful challenge. In working with the "developmentally disabled", I have been a tremendously blessed person. I have seen a level of love and emotional connection that has changed my life. The serenity of my DD patients has brought me to my knees on numerous occasions. It has not occurred to any of them to be ungrateful for the life they are given. Their lives are easily seen as a gift. Even in death, they are content for the most part. Maybe their presence for me is a witness of grace. That will not stop me looking for ways to better their lives and life-spans. Perhaps some genetic therapy may improve things, but I will look at the issue of unintended consequences.
Look sometimes at what it takes to stay alive with a heart transplant or liver transplant...
KA Ward MD
Great Falls MT
Dr. Ward,
Your comments are both insightful and encouraging. You've combined your experience with real people and your clinical knowledge, and it seems to me that you have wisdom in this area, not just technical expertise. I'd love for you to post your comment on the Christianity Today site. It would help the conversation going on over there!
Thanks again,
Amy Julia
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