Tagged: Alzheimer’s dementia
Down’s syndrome “is a medical diagnosis, not a name.”
Peter Elliott, Research Director of the Down Syndrome Research Foundation – UK, elaborates on his view of Down Syndrome as a medical problem warranting intervention. Money quote:
The children need our help; they have put on a brave face all of their lives. There is nothing to fear from a cure that is going to improve their memory and reduce brain injury.
More after the jump.
A “cure” for Down syndrome? — Reader feedback #7
Previous posts questioning the efforts to “cure” Down syndrome begin here and here.
Tora Frank of Madison, Wisconsin, whose daughter Asha has Down syndrome, offers a different view:
I would be eager to provide my daughter with a medication that could help her to learn more quickly, struggle less with everyday tasks, communicate better with those around her, make her needs known, allow her more independence. No, not eager—I would be *frantic* to do so. But is that assertion a comment about how I value my daughter? Am I somehow saying that I want her to be different—or that I want a different child–that I am dissatisfied with my daughter as she is?Not in the slightest. I’d argue that I’m just like any parent who wants to ensure, to the best of their ability, that their children are happy, healthy, and well.
The difficulty, if there is any, is that I feel the need to fiercely protect my daughter’s right to be exactly who she is. There are plenty of folks who believe that my daughter is …an accident …a mistake …a waste of space …a burden that society must bear. There are people who think her life should have been avoided, and even some who think that bringing babies like her into the world is unethical. So I feel as though I need to express, for all to see, that I’m proud of her every day. That I love her just the way she is.
But am I willing (even hypothetically) to put my need to assert that I love my daughter, the proud possessor of an extra chromosome, exactly as she is *above* my desire for her to thrive? Nope, not at all.
A “cure” for Down syndrome? — Reader feedback #6
This thread (starting here and here) questioning efforts to “cure” Down syndrome began with a quick email from Jenn Power, community leader at L’Arche Cape Breton, mother of identical twins with Down syndrome, and—disclosure—Contrarian‘s daughter-in-law.
At Contrarian’s request, she has elaborated:
In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society
Full post after the jump.
A “cure” for Down syndrome? — Reader feedback #5
Previous posts questioning the efforts to “cure” Down syndrome begin here and here.
Peter Elliott, Research Director for the Down Syndrome Research Foundation UK, writes:
In today’s world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome. Internal organs can be repaired, including Hersprungs where the baby can die within days of being born. Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for a host of illnesses. All of these can be treated with modern medicine and the children survive. Most will call these cures.
The last challenge is the mental handicap caused by a disturbance to the brain chemistry. We now know there is this chemical imbalance which not only effects and impairs short term memory it also prevents the fast processing of information and the formation and accessing of long term memory.
Full post after the jump.
A “cure” for Down syndrome? — Reader feedback #4
Previous posts questioning the efforts to “cure” Down syndrome begin here and here.
Silas Barss Donham, husband of Jenn Power, father of Josh and Jacob, and son of Contrarian, writes:
A person’s view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour. Most people in our society fall into the first group, but then, most people in our society don’t know much about people with intellectual disabilities. I suspect most people in our society wouldn’t imagine the second group exists.
This is related to one’s ability to appreciate the unique gifts people with Down syndrome offer to those around them. We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness. We see them as complete human beings who have a unique experience and viewpoint. Trying to “cure” this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.
Full post after the jump.
