Tagged: Jenn Power
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.
