Tagged: Jacob Donham

We are who we are and we love who we are

Last month, University of Massachusetts scientists working with laboratory cell cultures said they had succeeded in suppressing the extra chromosome associated with Down syndrome, a technique they predicted could lead to treatments targeted at the symptoms of the condition.

Halifax resident Renee Forrestall, whose 22-year-old daughter Marie Webb has Down Syndrome, condemned the research as akin to cultural genocide.

We’ve got a genetically similar community, visible minority who are being targeted and terminated globally. People think, “Well, this is the way it is and these people just shouldn’t be.”

A friend who knows I have identical twin grandchildren with Down Syndrome sought my reaction to Forrestall’s complaint. I replied:

I am not quite in the camp of those who reject any attempt to treat Down Syndrome, but I certainly understand why people with Down Syndrome and their parents (and grandparents) bristle at the assumption they need to be “fixed.”

J&J1I can only view this through my feelings about Josh and Jacob. They get excellent medical care. They have had tubes in their ears to deal with chronic infections. Josh has had heart surgery. These conditions and others result at least in part from their chromosomal distinctiveness. No one thought twice about whether they should be treated. Of course they should.

But what about the constellation of qualities that include, but are not limited to, their intellectual disabilities? These qualities are a huge part of who they are. Without them, they would be totally different. There will never be a magic bullet that increases their IQs but leaves their humour, affectionateness, willfulness, stubbornness, loyalty, laziness, warmth, and joyfulness untouched.

When I see Josh and Jacob struggle to read the simplest words, or to make their garbled speech understood, sure, I wish life were easier for them. But I don’t long for them to be different, or more like other children. I adore them as they are.

And by the way, there is already a genocide of children with Down in the form of selective abortions. We would not countenance this for sex selection or red hair or gayness, but we take it for granted with Down Syndrome.

Today, Mike Finnerty, summer host of CBC Radio’s The Current, carried out a series of interviews on this subject—with one of the Massachusetts researchers, with Renee Forrestall, and with Christie Hoos, a parent of a Down syndrome child whose views differ from Forrestall’s. By themselves, these interviews would have made a thought-provoking segment. What really set the piece apart was Finnerty’s final interview with Halifax actor and freelance photographer Will Brewer, who has Down syndrome, a conversation conducted without a trace of condescension on Finnerty’s part.

You can listen to the program here (after a CBC promo):

Here is a transcript of Will Brewer’s comments:

Mike Finnerty: Will Brewer was born with Down syndrome. He’s a photographer and an actor. Will, thanks for coming in and welcome.

Will Brewer: Thank you.

MF: What do you make of this scientific breakthrough we’ve been talking about?

WB: I was surprised. It would be hard for me to think about that because I am who I am, and I love who I am.

WillBrewer

Actor Will Brewer on the set of the Wendy Lill play, Corker

MF: Can you tell us about what sets you apart in your on mind. What do you think it is about you and the fact that you are someone with down syndrome that makes you different to others, special from others?

WB: Well, I am so special because my mom says that I am magic. But I would say that everyone with Down Sydnrome is magic because I see it in their eyes when I take their photo. I can tell that they are happy of who they are and how they came out, and who have loving parents who are just superb at what they do.

MF: Is there anything about your life that you would change if you could?

WB: No. I just. I am happy where I am because now I have found a place where I can create art and have friends and have great relationships with people who I care about, and people who have — beautiful; magical children with Down Syndrome.

MF: If you were to think about your life — you know, your 24 hours a day, seven days a week — what percentage of your life would you say is happy or joyous and what percentage is unhappy?

WB: Sometimes I do have issues. Sometimes I just feel like crying sometimes, for no particular reason, because I think that’s part of who I am, because I do have sensitive thoughts as well, but in everyday life, I enjoy it.

MF: Specifically, do you have issues — health iussues and other kinds of things that are, you know, not good in your life that you would, if you could, using these new therapies that might come down the road, that you would fix?

WillBrewer2WB: Well, 28 years ago, when I was born, I couldn’t breathe — or like, I couldn’t cry when I was born. So a couple months later, I had heart surgery. And I do have a thyroid condition as well.

MF: What do you think about the idea that sometime in the future you could, through medical intervention, correct or suppress that extra chromosome and that would mean that they’re weren’t people who had down syndrome? What would you think of that?

WB: I would think it would be very interesting to actually see that because, I do have friends who are not Down syndrome as well, and I don’t kow if they would want to change themselves. But I would never change. That’s who I am.

MF: What would you like people out there who are listening to know about your life as someone with down syndrome?

WB: Well, first of all, if they want to have a picture taken, they should come to me (laughs)

MF: Because you are a photographer?

WB: Of course.

MF: Are you a good photographer?

WB: Oh I really am.

MF: And what else would you like people to know?

WB: That we are who we are and we love who we are. We want a place in this earth, in this generation, in this life of everyday, and we are proud of who we are.

MF: Will, thanks for talking to us.

WB: Thank you.

Almost four years ago, Contrarian reported that researchers at Stanford University had used a drug therapy to improve the learning skills of mice with a form of Down syndrome. Like Renee Forrestall, Jenn Power, community leader at L’Arche Cape Breton and mother of my twin grandsons with Down, found the research distressing. She said people with Down’s don’t need a cure; they need “a society that values what they have to offer.”

The fascinating discussion that followed produced many thoughtful contributions on all sides of the issue. (There are too many posts to link individually, but if you click here and scroll back to the earliest posts you will find them all.) The Contrarian discussions eventually spread to the New York Times parenting blog Motherlode, where hundreds of people weighed in.

Power has also blogged thoughtfully about today’s interviews by Mike Finnerty on the Current, as has Christie Hoos, the mother of a Down child who is more open to the idea of treatment.

 

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.

Read more »

Does Down syndrome need to be “cured?”

David Gunn leaping - cJenn 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.

O Canaduck

Josh and Jacob belt out the national anthem: