In Response to Sticks and Stones

I recently read this article by Kurt Kondrich regarding issues facing the DS community.  The essence of his article can be summed up in this quote: “I am glad there is a movement to stop degrading language, but there is an urgent need to prioritize what is the most critical issue facing the Down syndrome community… , clearly the most critical issue facing the Down syndrome community is extinction of these precious individuals.” 

I agree with Kurt’s point that the abortion rate (~90%) of fetuses diagnosed with DS is very concerning, and with the soon to be developed non-invasive genetic testing, this could take this issue to a whole new level.  This statistic scares me for a handful of very powerful reasons:

1) The experience of families and people with DS is so very different than the genetic counselors and medical community portray it.  There are studies after  studies after studies showing similar results.  Intuitively from all of my research and the parents I have met, I would say about 90% of parents find it to be a very uplifting experience and about 10% have a hard time getting over ego and acceptance issues that they allow to drag them into isolation.  People are not making a “choice” if they are misinformed and the use of “diagnosis”, “risk”, and “defect” are plastered all over the discussion.

2) In a world with less people with DS, those families that remained are judged as “irresponsible”, looked down upon, offered less research dollars and services to help our children grow up to be productive and fulfilled members of society.

3) Eliminating people with DS would lead to less biodiversity and less cultural diversity.  I find this to be a lose-lose proposition.  Surely any family with a child with DS can speak to the value that child has provided them – that is most families about most of their kids.  But people with DS have much they can teach humanity.  My child taught me about a deeper love and acceptance, and that in turn has ,made me a better person for all the rest of you who meet me.  She has given me a deeper purpose in life and reoriented my life.  But, for those of you who have not experienced this, I cannot explain it fully in words.  People with DS can also help us understand Alzheimer’s (nearly 100% of people with DS develop it by their 50’s), about hard tumors and heart attacks (they rarely are impacted by either), about leukemia, diabetes, etc.  For each of their differences, they offer clues for scientists.  As we adapt to make our world accepting and accommodating of them, we learn a bit more about who we are and how we work.  Somehow I doubt human selection will prove superior to natural selection in the long run.

But, I also disagree with Kurt’s post on a very fundamental level.  I believe the “Spread the Word” may be one of the most important priorities for the DS community.  My counter-thesis would be that we cannot change abortion rates until we change the way we talk and think about DS and people who have DS.

If there is one thing Brianna’s birth crystalized within my mind, it was that as humans we think in words.  Without words to compartmentalize and standardize and distill our thoughts we would quickly forget the massive amount of information our five senses send through our brains.  Any emotion I feel, I work through them in my mind with words.  Any problem or difficulty I have, I use language to reason and make decisions.  So, the words in my vocabulary form the range, depth and complexity of my thoughts.  So, as long as a synonymous word for DS is used in a pejorative sense, it is demeaning to each person with DS. 

When a person uses the r-word, and nobody corrects them two things happen: first, that person recognizes it is okay to dehumanize people with cognitive different abilities (subconsciously or otherwise).  Second, people who hear this recognize it is okay to dehumanize people with DS.  And, so they are freer to reuse the word.  Eventually that word is like an oil that soaks in our pores and tells us it is okay to mistreat people with DS (verbally or otherwise).  And, this leads to the sorts of treatment  that scare a father most – 85% domestic abuse rate, 83% sexual assault rates, etc.  And then, back to the abortion point, an expectant mother reads about one of these crime cases and the attached statistic while she is awaiting her prenatal test results and she think “how could I bring a child into a world where she will never have respect”

Additionally, I think the campaign is very important because Special Olympic athletes helped  start this campaign as it was important to them.  Because the affected community has been active in self-advocacy, it is important that we recognize their dignity and self-determination.  Self-actualization and the recognition that you can help form the world you live in – rather than just allowing yourself to be conformed – is such a powerful realization.

Lastly, I think the R-word campaign is important, because it is about more than just that word.  When people hear the message of the campaign – whether it be someone correcting their speech or a PSA – they are forced to reckon with the fact that this group of people is no longer willing to be the brunt of low-brow humor and cheap jokes.  They mentally need to take a step back and recognize that they have to treat this group of people as equal humans worthy of dignity.

So Kurt, I agree that the abortion rate of DS is alarming, but I believe a primary driver is the lack of respect our society puts on people with DS – it is a symptom of a larger problem.  And asking people to treat people with DS as equals is the first step in solving this issue.

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About liftedupbyds

I am father of a child with Down syndrome on a quest to bring greater positive awareness and greater opportunities to people with Down syndrome.
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