On Suffering and Down Syndrome

IMG_1658

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.

Advertisements

25 thoughts on “On Suffering and Down Syndrome

  1. It is so disheartening to hear that sort of thinking is still prevalent. You bring up such an important point about our strides to be inclusive of all marginalized groups, yet seem to ignore those we deem as disabled. In one text I’ve recently encountered, it suggests that disability is a concept created by society, not genetics. A child might have a walking impairment, but by not including a wheelchair ramp to a pool, we have made his impairment into a disability. The key term is we, not he. Ableism is unfortunately still an alarming issue in our society, but because there has not yet been a civil rights movement for these individuals, we hear more about racism, sexism, etc. Owen is lucky to have you as a mama…know that there are other people out there committed to helping you and your family fight the good fight and bring awarenes to these important topics! I love reading your posts and hearing about the beautiful moments you are having as a family!

    • Thanks Hannah. That is an interesting concept about disability being a concept created by society. I definitely think when we eliminate barriers for people to participate in society, disability starts to disappear.

  2. Thank you for your post Danielle. I work with children with Autism and have worked with Children with Down syndrome. They bring more joy to my life than any other children I have worked with. I don’t know if you have heard of this story, but I thought I would share it: http://timsplaceabq.com. Keep doing what you are doing. You are awesome!

  3. Thank you for the well-reasoned post and for the link to my blog post. Nice also to see that we’re blogging (and living) in the same town. I look forward to meeting you at this year’s DSL Walk on 10/4, if not before then.

    • Thanks Mark! I have really enjoyed reading your blog. We will definitely be at the walk in October. Look forward to meeting you!

  4. You are such a gifted writer and mother. Owen is so lucky to have some who eloquently depicts how wonderful his life is. I love reading your posts!

  5. As the mother of a son with some special needs, I think your son is also very lucky to have you for a mom. Sounds like you’ll be a wonderful advocate for him during his school years and beyond!

  6. I worked in a hospital for people with downs syndrome for about two years. I learned from those people, even though I had originally thought I would have a lot to share. I learned about kindness, community, the value of unconditional acceptance, and that we really can just be, rather than have to do anything. I thought I had a lot to offer, but the people thought I was a bit silly, because I’d missed the new strawberries, or the fact that there was a frog in the garden. It taught me a lot about life, and I raised my daughter differently because of it.

    In this very rational world, where we are taught that people have value in achievement, what we can do and the status we can acquire, I think we could learn more about being human again. Instead of thinking ourselves superior because of our supposed ‘abilities’ I think it’s time to realize that perhaps WE have a lot to learn.

    Enjoy your little boy. In a world where love counts the most, he’s very fortunate.

  7. I’m a huge Dawkins supporter but he showed his English ass with that comment. You and your husband sound like phenomenal parents, which you should be commended for as it is a quality lacking in our society.

  8. I’m a new follower, but I love your blog! I have a five month old daughter, and I have to say, I was so nervous about genetic testing. How do parents make the decision to keep or actually abort a baby that at one point, they truly wanted more than anything? My sister and I were pregnant at the same time, 8 weeks apart, and we had many conversations about the subject. What really made me realize that OF COURSE I would love my baby if she had DS was a documentary on HBO called The Crash Reel. It’s about snowboarder Kevin Pearce, but one of his siblings has DS, and the love they had for him and the love he showed was real, and how could I not accept that? My Hazel is perfectly normal, but I know in subsequent pregnancies I won’t be worried at all. Blogs like this just help reinforce that ALL babies love and all people love deep down and that’s just the essence of being a human being! There is no suffering that.

  9. “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?”

    This point really got to me and really I think showed the truth of your post. It’s incredibly true. Love reading your blog and your and John’s adventures with Owen. Thanks

    • Thanks Randall! It’s a pretty powerful number. I’m glad there is a study out there that I can point to because clearly first hand experience is just not enough to convince some people.

  10. thank you for posting this. for many reasons. for me, it served as educational. i have no familial connections with DS, nor do i have any close friends with DS. (i only know y’all a little, but i am so inspired by your story!)
    growing up, and now, i obviously encounter[ed] many people with DS and other developmental disabilities. i think i’m a pretty observational person and, concerning DS in particular, i’ve noticed since middle school that the kids (people) with DS that were supported to live life to it’s fullest (a “normal” life?) fulfilled this idea. the ones that were treated as if they were “struggling” ended up, in my limited observations, fulfilling that idea. as with any child [person], growing up has so much more to do with parenting and community conditions than how that person is born.

    (i’m admittedly ignorant on the condition, so, just in case anything above was offensive, it certainly wasn’t meant to be. thank you for educating me–i.e. the general public.)

    • I agree with you. I am glad that I didn’t make any decisions based on my limited encounters with people with DS growing up. I don’t think that it’s any secret that when someone believes in you and tells you that you matter and can do great things, you have a much greater chance at reaching your potential. Kids who have a bar set high for them will more often than not rise to the occasion. Until recently with a few exceptions, we haven’t set that bar very high for people with DS.

  11. The increased life expectancy statistic is striking, but the link didn’t really explain why, so I did a little hunting, and found this was due to “the introduction of antibiotics to fight respiratory infections which had previously been a common cause of death due to compromised immune systems exacerbated by institutionalization and the spread of infection among residents.” Lordy, that speaks volumes, and is worth a blog post of its own.

    The source goes on to note that “The ability to treat cardiac defects also factors as a cause for increased longevity.” I’m guessing you’ve already read the same article (http://www.lozierinstitute.org/downsyndrome/#_edn10) but I thought perhaps other readers might also be curious.

    Your family is beautiful, and so are your choices.

    • Thanks so much for this info Paula! I have edited my post to reflect this and included a link to that article.

  12. Pingback: “Abort it and try again” | Let's go have some pancakes.

  13. I’ve met DS folks and yes, they are indeed very happy individuals. My assessment was sweet and naive. Of course your child is not suffering when in your care. But he won’t be in your care forever. I wonder if your viewpoint will change the first time he comes home in tears because of an ignorant comment (children can be very cruel) or angry and frustrated because he can’t keep up with his classmates. I may not have a developmental issue, but as someone with Bipolar I can certainly empathize with how stigma regarding a condition can affect a person as much if not more than the condition itself.

    • I think about those things all the time. I know that my son is heading out into a world that will have a hard time looking past a genetic condition that he wears on his face. Children can be cruel, you are correct. A big part of the reason I keep this blog is to educate people on Down syndrome so that they look at those individuals as people and not a set of narrow-minded stereotypes. In a small way I am trying to change the world before he is big enough to know how cruel it can be. I will have to teach my son to be a self-advocate because I won’t be around all the time, something not every parent has to do. As hard as those moments may be, I do not think they make his life not worth living. I also think that stigmas and stereotypes are issues that needs to change with the world, not my son. I realize that is a reality that may not be changed in my lifetime and I will have to raise him in preparation for that, but if we start preventing life simply because a person is different and may experience judgement, then we are creating a society where difference is punished and not celebrated. I tend to think humanity is better when we embrace and celebrate difference. The harder task is changing society’s perceptions, but I think it is a better solution in the long term than aborting my son.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s