On Suffering and Down Syndrome

The face of suffering.

I received the comment below on my last post concerning Richard Dawkins’ recent twitter comments:

“One comment that Richard Dawkins made was cherry picked and is now being used to demonize one of the greatest minds of our time. I may not always agree with Dawkins, but before you go off on him for not being more accepting perhaps you should make sure you read the entire conversation.

I have made a conscious decision to not have children as I do not want my mental illness (bipolar II) passed along. You ask “Who are we to decide which lives are precious?” I ask “Who are we to impose a debilitating condition on a life form?” I’ve had days where getting out of bed is a superhuman feat. I’ve been on the psychological/pharmaceutical merry-go-round for 30+ years, and there is nothing beautiful about it.”

I started to craft a response, and a few paragraphs in, I realized I really needed another post to address this.

Let me clear up that I am not trying to demonize Dawkins. In the past I have agreed with him on many other issues, which actually makes these comments that much harder to swallow. I have read the entire conversation, and I’ve also read Dawkins’ more expanded thoughts and so called “apology” on his site, which really only shed more light concerning his misinformation on this topic. Based on his comments, I think he has a pretty rudimentary understanding of DS. This is his summary of the condition:

“Down Syndrome, or Trisomy 21, results from the presence of an extra copy (or partial copy) of Chromosome 21. Symptoms vary but usually include characteristic facial features especially eye shape, abnormal growth patterns, and moderate mental disability. Life expectancy is reduced, and those who survive through adulthood often need special care as though they are children.”

Different face. Mental disability. Reduced life expectancy. Adult children. Most people with DS would agree that that’s a pretty narrow and reductionist view of Down syndrome. I hope you’ll read further to expand get a more accurate description.

I also take issue with the closing statement of this “apology” where he generalizes all his opponents on this topic as having a “wanton eagerness to misunderstand.” I think a core value in my life is a fervent eagerness to understand… everyone. All people. In all walks of life and places of the world in all circumstances. I also have an eagerness to help others understand, and having a son with Down syndrome gives me a unique perspective to share with the world who otherwise might not be as close to someone with an intellectual disability. Please pull up a chair Richard.

Reading this comment on my previous post, I realized I didn’t really cover much about the idea suffering in my first entry, which is an issue that often comes up when discussing reasons for terminating a pregnancy with a Down syndrome diagnosis. When talking with other moms who have children with DS, the idea of our children suffering is sometimes a bit of an inside joke. We sometimes share pictures of our kids’ latest accomplishments or just an average night at home laughing and playing with captions like “look how much he’s suffering.” We are certainly not trying to make light of those experiencing true suffering, but many of us simply don’t understand why people continue to associate suffering with DS. We are happy with the lives we have, which really aren’t that much different than most. Most days suffering is not on our radar and Down syndrome itself really is not a “debilitating condition.”

I respect the decision to not have children in order prevent passing on a hereditary disease to your children. The thought of my son suffering for even a moment breaks my heart so I definitely understand the strong desire prevent that pain, but I really don’t think the suffering argument applies when talking about Down syndrome. I think many people are confused about what life with DS is like. I spent A LOT of time while I was pregnant thinking about my son’s future and whether he would be happy. I have a pillowcases stained with mascara from crying myself to sleep overwhelmed by the thought of his possible suffering. Suffering was certainly on my radar then. After our diagnosis, I immersed myself in trying to find out what it was really like to live with DS and whether my son could have a happy life. When I read accounts from individuals with DS and their parents, I found people that were overwhelmingly happy with their lives. So much so, that I didn’t believe it. I thought for sure they were hiding something, that they were using effusive optimism as a coping mechanism to deal with the struggles. I had a hard time wrapping my mind around being happy with that life because I didn’t understand Down syndrome. I was pretty ignorant myself at the time.

In 2011, a study found that 99% of people with Down syndrome are happy with their lives. The pool of participants consisted of individuals with DS over twelve years of age and across a wide spectrum of functionality. 99%. How high do you think that number is among those with a typical number of genes? Studies find similarly high percentages from their parents and siblings regarding their feelings about their loved one with DS. People who have Down syndrome are for the most part happy with their lives and the people that know them are glad that they do. Mark Leach has a wonderful post about this topic. Down syndrome does not inherently causes suffering. This is simply a misconception.

My son is about to turn 1. He wakes up every morning in a happy fit of babbling. When I pick him up he gets the biggest smile on his face. He loves music and sings along in the car. He enjoys exploring new things and marvels at his reflection in the mirror. When his dad walks in the door he gets the biggest smile on his face, because he knows daddy is coming to play. He is both patient and persistent which gives him a wonderful disposition for learning. He has been a little upset this week because he is teething, so in that sense, he is suffering a little. I think overall though, he is a pretty happy kid. My husband and I are thrilled to be his parents. He has brought so much joy to our home. I hear similar reports throughout the DS community.

I know hard days are ahead. Some will be really hard. In a few years the developmental differences between him and his peers will be more noticeable. I dread the day he comes home and asks me what the word “retarded” means or has a day when he feels lonely. Someday he may be frustrated that he can’t pick things up as quickly as his peers can. He will be met with obstacles as struggle is part of being human, and certainly part of being a human with Down syndrome. The struggles related to Down syndrome will be especially difficult I’m sure, but I’ve found nothing that indicates these struggles diminish the value of his life or the potential he has for happiness. These are things that are possible to overcome and I feel confident Owen has just as great a shot as anyone else at having a happy, meaningful and successful life. It has not always been this way for people with Down syndrome.

Over that past century we have made so many strides in accepting and fighting for the rights of marginalized people groups. If there is one we’ve left behind in the dust, it is those with intellectual disabilities, and this has perhaps perpetrated the idea of suffering in people with DS. Deinstitutionalization didn’t begin until the 50’s, although it continued to go on much longer than that. As recent as the 80’s it was common practice for doctors to refuse to perform a life-saving procedure on an infant with Down syndrome. Often feeding fell under this umbrella of “life-saving.” These conditions reflect a collective societal philosophy that people with DS are less than people. I suppose you could say that an individual living with a heart defect that could easily have been fixed might find themselves suffering. An individual who had the capacity to go to school and grow up and live independently, but was instead institutionalized might have lived a life full of suffering. Down syndrome didn’t cause the suffering. Society’s response to it did and we are only still in the beginning stages of improving our response.

Since the advent of Early intervention in the 90s, individuals living with DS today are living more independent lives than ever. Most I have met have vibrant social lives. People with Down syndrome are going to college, getting their driver’s license, and getting married. They contribute to their communities and the people that know them are glad that they do. In my short lifetime, life expectancy for Down syndrome has more than doubled, going from 25 (1983) to 60 (today). This is mostly due to the introduction of antibiotics and innovations in treatment and correction of heart defects associated with DS. These medical improvements combined with Early Intervention programs and changing social perception have made such a big difference in the lives of those with DS in such a short span of time. Imagine what the next 50 years could hold.

Unfortunately these are things understood by the minority and not the majority. Many parents making the difficult decision to continue or terminate a pregnancy are doing so with very limited, outdated information and its source is often ill-equipped medical professionals. It’s time for a paradigm shift. If we spent our efforts cultivating an environment where all people are supported, valued, and included, maybe we wouldn’t need to discuss the ethics concerning whether or not to bring them into this world.