A father responds to the Down’s ‘cure’ debate

Silas Donham responds to posts on the New York Times Motherlode blog criticizing those who would reject potential chemical treatments intended to improve intellectual function of infants with Down syndrome. This difficult topic provoked a debate here on Contrarian that was remarkably thoughtful and respectful. But when the Times picked up on our discussion, many commenters were incredulous that any parent would hesitate accept such treatments for their children. A few had nasty things to say. Silas responds:

First, the disclosure: I am Jenn Power’s husband, father to Jacob and Josh, and son to contrarian.ca, the blogger who got all this started. Like Jenn, I have spent my adult life living and working intimately with people who have intellectual disabilities.

Many of the contributors to this discussion seem to be imagining a magic pill without risk or side-effect that would remove the intellectual impairment associated with Down Syndrome. Medical treatments like that do not exist. Of course Jenn and I want our children to have every advantage, and the fullness of potential, which is available to them. Our boys have glasses, they have tubes in their ears, they attend school as well as physio-, occupational, and speech therapy, a clinic that focuses on eating difficulties, an adaptive swim program, a youth group, church, friends’ birthday parties, etc. One of my boys had surgery to repair a hole in his heart. I home-schooled them for a year to get ready for regular school. But we would not allow a medical researcher, however sincere and well-meaning, to take a potential chemical blender to their brains in infancy. Thank you, no. In that sense, our boys are just fine the way they are.

Many of you have posed questions from the imagined viewpoint of a person with a disability: if you had Down Syndrome, wouldn’t you want to be “cured”? Can you imagine a person with no legs NOT wanting a treatment that would give him legs? It is a sad observation that the voices of actual people with disabilities are usually absent from discussions of this type (thanks to Ingrid in San Francisco for bucking that trend). In fact, their answers to these questions are often not what you would expect. I first contemplated that idea when I heard a CBC radio piece produced by Dave Hingsburger, a counsellor and disability rights activist in Toronto. Over the course of a two-hour program, Hingsburger talked to many members of the disability community, including people with Down Syndrome, as well as a man who has no legs. At some point in the course of other discussions he asked each person he talked to whether, if presented with a pill that would get rid of their disability, they would take it. Without exception, they all said no.

At the time, this was an earth-shattering notion for me. But the fact is that I know many people who have intellectual disabilities. No-one I know sees themselves as diseased, suffering, or in need of a cure. So who is really imposing their viewpoint here?

Jenn framed her response to this medical research in terms of the benefit she has received from her relationships with people with disabilities, and the benefit society as a whole stands to gain from them. Unfortunately some of you have construed that to mean that people with disabilities should be kept in a limited, suffering state so the rest of us might benefit. Several of you even made the hurtful comparison between our boys and “therapy animals.”

Perhaps it is a symptom of the way people with disabilities are devalued in our society that we so often feel the need to justify them by naming the benefit other people receive from them. No other group in society needs to do this. However, that is not the basis by which we make decisions about our boys’ lives. Everything we do (including the hypothetical rejection of experimental brain treatment) for them is with their best interests at heart. And to respond to other posters, we have not forgotten what might happen to our boys when we are no longer around. That is why our whole lives are devoted to people with intellectual disabilities, from our parenting to our professional lives with L’Arche to our involvement in the local school to our involvement in discussions such as this one. A society that recognizes the gifts of people with disabilities is one that goes beyond inclusion and tolerance to real relationship.

People are complicated organisms. Tinkering with one aspect affects a host of others. As a society we tend to overvalue independence and intellectual competence. These things do not bear a linear relationship with happiness or quality of life. There are a lot of independent people who lead very lonely lives. In my experience of people with intellectual disabilities, the ones who are more capable and independent are often the ones who have the hardest time finding a place of belonging, and who therefore lead lives of greater suffering. I don’t mean to say that capability is a bad thing; I just mean that it is complicated, and that makes the ramifications of this treatment hard to predict.

We don’t know whether this potential brain treatment will lead to greater quality of life for people with Down Syndrome. We don’t know what its risks and side-effects might be. We do know that people with disabilities are undervalued, insufficiently supported, and too seldom consulted or in control of the decisions that affect their lives. Why don’t we put more work into supporting the weaker members of society, combating bullying and abuse, and discovering and learning from the experience of people who have disabilities, and get less excited about expensive, unproven treatments that may do more harm than good?

Welcome New York Times Motherlode readers

For those who have followed the debate over potential treatments for Down syndrome in the New York Times parenting blog Motherlode to its source here on Contrarian, I have assembled a series of links you might want to follow.

Our discussion of this issue began with this post back in November. Jenn Power elaborated on her concerns here, and Dr. Ahmad Salehi, the Stanford researcher whose work touched off the discussion, responded thoughtfully here. Jenn’s husband Silas Barss Donham, my son, weighed in here.

Other reader commented here, here, and here.

Jenn is the community leader of L’Arche Cape Breton in Iron Mines, Nova Scotia, a community for “people with developmental disabilities and those who choose to share life with them.” It’s one of about 130 L’Arche communities around the world founded by the acclaimed humanitarian and philosopher Jean Vanier. A few links:

You may have gathered that I’m very proud of my daughter-in-law. It was distressing to see so many Motherlode commenters leap to the conclusion that, because Jenn recoiled at the prospect of chemical treatment for her sons’ intellectual impairment, she must be selfish or patronizing. In fact, Jenn is one of the least selfish, most compassionate and giving people I know. My own post on Motherlode elaborates on her admirable work.

NY Times picks up our Down syndrome thread

Motherlode, a New York Times blog on parenting, has picked up on Contrarian’s discussion about potential treatments for the intellectual impairment associated with Down syndrome — and touched off quite a debate of it its own.

Our own discussion began with L’Arche Cape Breton Community Leader Jenn Power’s disquiet at the assumption that Down syndrome constitutes a disease in need of curing. Jenn, who is both the adopted mother of identical twins with Down Syndrome and — disclosure — my daughter-in-law, spoke eloquently of Down traits that don’t need fixing:

[I]ncredible 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?”

david-sThe Times quoted at length from Jenn’s subsequent, more detailed Contrarian post, and from Stanford University researcher Dr. Ahmad Salehi’s thoughtful response here as well. Motherlode’s thread on the subject has now attracted more than 100 comments. Several are thoughtful and constructive, but a shocking number come from people quick to condemn Jenn as “selfish” or “patronizing” for not jumping at the chance to chemically enhance her sons’ cognitive skills.

Many Contrarian readers are familiar enough with Jenn to know her life is the antithesis of selfishness. As I wrote in my own comment on Motherlode:

As the leader of this extraordinary [L’Arche] community, Jenn manages an incredible range of human emotions, trials, joys, and tribulations, along with the myriad practical details required to manage any large group of diverse people. She does this with enormous tact, kindness, generosity, wisdom, humor, firmness, practicality, and love. And immense hard work.

From this I conclude that, despite decades of progress integrating developmentally challenged citizens into society, we have a long way to go in overcoming the kneejerk tendency to view people like my grandsons as less good and less valuable than the rest of us. That’s our loss as much as it is theirs.

In a separate post aimed at New York Times readers, I will include links to all our Down syndrome posts, and to several short videos featuring the extraordinary folks at L’Arche Cape Breton, including my esteemed two grandsons, Josh and Jacob.

Down Syndrome researcher responds to misgivings about a ‘cure’

In late November, 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. Jenn Power, community leader at L’Arche Cape Breton and mother of twin boys with Down’s, 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.” This produced a fascinating discussion with many thoughtful contributions on all sides of the issue.

At Contrarian‘s request, Dr. Ahmad Salehi, M.D., Ph.D., the lead researcher on the Stanford University study, has responded to our discussion in an equally thoughtful spirit.

Ahmad SalehiFirst of all, I would like to thank you for a quite accurate description of our recent study on the mouse models of Down syndrome. In this study, we found that some aspects of cognition could be restored in mouse models of Down syndrome using a pro-drug.

For the last 10 years, the primary goal of our Down syndrome research at Stanford University has been to understand the molecular mechanisms of cognitive dysfunctions in people with Down syndrome. Our recent study has brought us a little closer to understanding cognition in a mouse model of Down syndrome.

In response to Jenn (see posts here and here), I would like to point out that restoring a rather limited aspect of learning and memory in a mouse model of Down syndrome is far from being a cure. It is a very small step toward understanding how the brain works and how we can potentially restore dysfunction found in the brain of mouse models of Down syndrome. The goal of our research is not to change the personality of a person with Down syndrome, but rather to help them lead more independent lives.

There are many aspects of people with Down syndrome that we should consider a blessing. Their positive interactions with others, their cheerfulness and affection, and their nonjudgmental attitude are just a few examples. The question whether all people with Down syndrome need some kind of treatment is entirely personal and completely depends on the individual situation. Nevertheless, not every child with Down syndrome is as lucky as Jenn’s children. There are many places in the world that may not look at Down syndrome the way that Jenn does. For these children, finding a way to even partially restore cognition or preventing further deterioration in their learning and memory would be extremely important and helpful in their very competitive societies.

One other concern that I heard recently is about the fact that Down syndrome is a chromosomal disorder and that there is no way to remove the extra chromosome from every cell. Although this is indeed the case, we may not need to remove the entire extra chromosome 21 to counter the cognitive dysfunction associated with Down syndrome. Our previous work has shown that indeed there are a few genes on chromosome 21 whose overexpression could be linked to dysfunction of several brain areas in mouse models of Down syndrome. This means that finding a way to reduce the expression of these genes in the future could be a fundamental treatment for certain aspects of Down syndrome.

Thanks to advances in medical treatment and inclusion in society, people with Down syndrome live longer than ever before. Although this is good, it brings its own challenges. People with Down syndrome on average age faster and are at a much higher risk of developing dementia and early-onset Alzheimer’s disease. After the age of 40 years, the brains of people with Down syndrome look very similar to those of people with Alzheimer’s disease. The task for us is to find out how to prevent adults with Down syndrome from converting to Alzheimer’s disease later in their lives. There are at least 350,000 people with Down syndrome just in the US. Preventing even a fraction of this rather large group from developing Alzheimer’s disease is an important health issue.

I do believe that we should avoid giving false hope to people with Down syndrome and their families. But the only thing that keeps us going as parents and as researchers is the hope that one day, our children will live free of problems that are within our reach to somehow resolve.

(Sietske N. Heyn. Ph.D., also contributed to this post.)

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.

Continue reading Down’s syndrome “is a medical diagnosis, not a name.”

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

Josh glasses-csThis 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.

Continue reading A “cure” for Down syndrome? — Reader feedback #6

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.

Continue reading A “cure” for Down syndrome? — Reader feedback #5

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.

Continue reading A “cure” for Down syndrome? — Reader feedback #4

A “cure” for Down syndrome? – reader feedback #2

David Croft-sShortly 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.

Continue reading A “cure” for Down syndrome? – reader feedback #2