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When people learn that my son Silas and his wife Jenn Power adopted a pair of identical twins with Down Syndrome, they often say one of two things: “I could never do that,” or “You must be saints.”
I love Silas and Jenn beyond measure, and admire them hugely, but I can attest they are not saints. The explanation for their decision to adopt Josh and Jacob lies elsewhere.
As members of the L’Arche Community in Iron Mines, Orangedale, and Mabou, Cape Breton, Silas and Jenn have lots of experience working and living with developmentally disabled people. It’s what they like doing, and they’re good at it. Like most people who spend time at l’Arche, they describe the experience as one of blessings received more than bestowed.
This week comes scientific evidence they are not alone. Researchers at Boston’s Children’s Hospital and other centers carried out one of the largest surveys every conducted of people with Down Syndrome and their families. Respondents with Down reported overwhelming happiness with their lives, and family members said having a child or sibling with Down had been a positive experience.
The researchers published three studies on their findings in the October issue of American Journal of Medical Genetics. Their study sought to answer the questions most commonly asked by prospective parents of children with Down syndrome:
- What is life actually like for parents who have sons and daughters with DS?
- How many of them love their son or daughter with DS?
- How many of them regret having their child?
The researchers heard from heard from 2,044 parents of children with Down syndrome:
99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.
They surveyed 822 siblings of people with Down Syndrome::
More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.
Perhaps most importantly, they heard from 268 people with Down Syndrome, aged 12 or over:
[N]early 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life.
Longtime readers of Contrarian have encountered Josh and Jacob before, celebrating Canada Day with their rousing rendition of O Canaduck!, and on a fleeting moment when they were definitely not happy with their lives.
The experience of actual parents with actual Down syndrome is the best answer for those who say, “I could never do that.” They might not choose it, but when responsibility for someone with Down syndrome falls upon them, most people rise briskly to the occasion, and look back at the experience as positive and rewarding.
This winter, Contrarian hosted an interesting discussion about whether Down syndrome needs a cure. Now reader Denis Falvy offers an intriguing footnote. It seems that people with Down syndrome rarely get tumors.
Recent research at Children’s Hospital in Boston, reported in the journal Nature, suggests that a gene (gene 231) on the extra chromosome (chromosome 21) carried by people with DS may inhibit cancer by blocking the activity of a protein tumors need to grow. Money quote:
The gene suppresses the growth of new blood vessels that cancers need by blocking the activity of the protein calcineurin, suggesting a new target for future cancer drugs. The investigators… add that chromosome 21 might possess four or five anti-angiogenesis genes.
Last Thursday, the Cape Breton Island Film Series showed Pedro Almodóvar’s Broken Embraces, which Roger Ebert describes as, “a voluptuary of a film, drunk on primary colors, caressing Penelope Cruz, using the devices of a Hitchcock to distract us with surfaces while the sinister uncoils beneath.” It’s a lush, layered melodrama, with lots of surprises hidden among its folds, including this utterly unexpected footnote to Contrarian’s conversation about whether medical science should try to “cure” Down syndrome.
The central character, Harry Caine (Lluís Homar), is a movie director who turns to script-writing after a brutal car accident leaves him blind. Early in the movie, Harry’s devoted agent, Judit García (Blanca Portillo), urges him to get started on a new screenplay. Mindful of Harry’s fragile finances, she suggests “something with fantasy or terror for kiddies is what it sells best.”
Harry: I thought of doing a story inspired by Arthur Miller’s son.
Judit: The writer who married Marilyn?
Harry: Yes. After Marilyn, he married the photojournalist Inge Morat, and they had a son. The kid was born with Down Syndrome, and Arthur Miller hid it. He doesn’t even mention him in his mémoires, and never wanted to see him. Despite his wife’s pleading, he never wanted to see him.
Judit: How terrible!
Harry: But one day they met by chance. Arthur Miller was speaking at a conference in defense of a mentally handicapped person who had been sentenced to death after a forced confession. Seated in the audience was his son with Down Syndrome. After the speech, the son went to the podium and hugged his father effusively. Arthur Miller had no idea how to shake off this unknown man until the man released him and said:
“I’m your son, Daniel. I’m so proud of you Papa.”
Although the scene prefigures the importance of father-son relationships in Broken Embraces, the movie never mentions the Millers again.
Arthur Miller, who died in 2005, is not only one of America’s greatest playwrights, but also the unofficial tribune of the Left—a celebrated humanitarian who courageously stood up to the anti-Communist fear-mongering of the 1950s. Growing up in a liberal New England family of that era, Contrarian was raised on The Crucible, Miller’s play about the Salem witch hunt, a thinly disguised allegory about McCarthyism.
The exchange between Judit and Harry left me stunned, and wondering how much of it is true?
Virtually all of it, it seems, up to and including Daniel’s surprise embrace of his father at a September, 1995, conference on false confessions in Hartford, Connecticut, where Miller spoke in support of Richard Lapointe, a mentally challenged man who, his supporters contend, was falsely convicted of murder and sentenced to die. Vanity Fair broke the story in this 2007 exposé.
I’m still gobsmacked. Right-wing bloggers have had a great sport proclaiming that they always knew Miller was a no-good hypocrite. Their left-wing counterparts have been at pains to point out that, in 1966, when Danny was born, institutionalizing infants with Down Syndrome was still the norm, and the course advised by most doctors (though increasingly ignored by mothers like Morat, who wanted to raise Danny at home, but bowed to the great writer’s wishes).
Now in his 40s, Danny is said to be doing well, holding down a job, and living quite independently. Apparently at the urging of his son-in-law, the actor Daniel Day-Lewis, Arthur Miller saw his son more often in the last decade of his life. Six weeks before he died, the playwright added a codicil to his will granting all four of his children an equal share of his estate.
While we can take some comfort in the fact that Down’s syndrome infants are no longer bundled off to institutions, our pleasure should be tempered by the knowledge that Richard Lapointe, the handicapped convict championed by Miller, is still seeking justice. His re-trial resumes in May.
Perhaps most important, Miller’s ignorance and shame should not obscure the equally dramatic story of Danny’s capacity for love and forgiveness. Let’s hope no one finds a cure for that.
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?”
The 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.
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.
First 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.)
Pamela Wilson, Special Needs Children Editor of the Bella Online website, which bills itself as the second-largest women’s website in the world, offers a link to Down syndrome advocacy on Twitter, and further thoughts on our discussion of whether Down syndrome needs a “cure.”
We really don’t know what choices we would make if a safe, effective “cure” was developed for the range of intellectual disability found in most individuals with Down syndrome. Looking at the history of ‘treatments‘ for children with Down syndrome concocted in the past quarter of a century would make any parent hesitant to embrace a new version of what ‘scientists’ call a cure.
The thought of giving pharmaceuticals of any kind to newborns, young babies or children is distressing to most parents, especially since those being considered in current research are known to have serious side effects in teens and adults. Previous treatments with supplements considered helpful by sales representatives have not been shown to be effective. It’s likely that any “cure” will have one or two false starts — as one dad mentioned, these are probably the same folks who once thought LSD was a great treatment for people with schizophrenia. Most parents of individuals with Down syndrome do not share a culture of disability with their sons and daughters.
Continued after the jump
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.
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.
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.
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.