Tagged: Down syndrome
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.
A “cure” for Down syndrome? – reader feedback #2
Shortly after I posted Jenn Power’s comments, a friend asked, “What if it were autism instead of Down syndrome — would you hesitate then? As if in reply, Contrarian received this email from David Croft, a Dartmouth father of two autistic children:
Sure, there are aspects of autism that I would like to better control in the boys. There are manifestations that, if they were removed, would make the boys more functional and easier to handle – but would the removal of these aspects likewise involve the removal of aspects of the boys that make them them?
David’s full comments after the break.
Does Down syndrome need to be “cured?” – reader feedback #1
Cathy Brady
Many readers have responded thoughtfully, and at length, to our post about Jenn Power’s reaction to news that Stanford University researchers had made headway toward a potential treatment for the cognitive impairment that is one feature of Down syndrome.
I’ve received a wide range of views from parents and researchers, about both Down syndrome and autism. Thanks to all who contributed.
Contrarian is on the road with limited Internet access. I’ll be posting these as I can over the next few days, more or less in the order I received them.
Several are quite long, and deserve to be read in their entirety, so look for an illustrative excerpt, with the longer submission after the jump.
Does Down syndrome need to be “cured?”
Jenn Power, Community Leader of L’Arche Cape Breton, mother of twin boys with Down syndrome, and—disclosure—Contrarian’s daughter-in-law, had an interesting reaction to news that a Stanford University research team has made headway toward a potential treatment for the intellectual impairment that is one of Down’s symptoms: She welled up with tears.
The researchers probed the brains of mice genetically engineered to develop a rodent version of Down syndrome. They found that a region known as the hippocampus lacked a neurotransmitter that enables the brain to perform contextual learning. This is the process of gaining and applying knowledge in real-world situations—things like remembering where you left the car keys.
The team found that injecting the mice with a drug the brain converts to the missing neurotransmitter markedly improved their learning skills, albeit temporarily.
The lead researcher, physician and neuroscientist Ahmad Salehi, emphasized that this may not work in humans. He also pointed out that Down syndrome is a multifaceted condition, and cognitive impairment is just one of its characteristics.
“No kidding,” said Jenn.
Try incredible smiles, overflowing affection, stubbornness, great sense of humour, cute toes, love for orange pop and Rita MacNeil, endless capacity to forgive… the list goes on and on. I am not sure I can articulate why, but I find this article both upsetting (lump in my throat and eyes welled with tears right now) and disturbing. Why does everything need a “cure?”
I have mixed feelings about this. My grandsons, and the many L’Arche core members with Down syndrome (including the irrepressible David Gunn, pictured above in a photo by L’Arche assistant Amil Zavo), have taught me to appreciate the wonderful qualities that often accompany the condition.
On the other hand, I have seen Josh and Jacob struggle painfully with learning tasks that come easily to other children (and the pride and delight they take when they do learn a new skill).
We would not hesitate to treat the heart conditions that afflict many people with Down syndrome. So why does someone with Jenn’s great love for, and insight into, Down children and adults feel so troubled by the theoretical possibility of treating their intellectual impairment?
Jenn didn’t elaborate, but I think it’s natural to wonder whether the quest for a “cure” arises out of, or at least accords with, the undervaluing of people with Down syndrome that is so prevalent. I also wonder about the impact a chemical treatment might have on the wonderful aspects of Down Sydnrome.
This issue may get wrapped up in the emerging debate about smart pills, discussed in the October issue of Scientific American.
I suspect Dr. Salehi has heard these misgivings before. Contacted by Contrarian, he kindly offered to comment on this blog post. I look forward to his observations, and those of Jenn or anyone else who wishes to respond.
