Eclipsing Down syndrome

NASA 2017 EclipseOn August 21, 2017, the first full solar eclipse spanned the continental United States. Our family was there to see it and the experience prompted this reflection on what the world is doing to those with Down syndrome. 

Solar MADness 2017

Living in Louisville, Kentucky, we were geographically fortunate to have the path of totality–the path of the sun that would have a total eclipse–pass across the southwestern corner of our state, just under three hours away by car. Our county school system gave excused absences for students witnessing the eclipse, and so we packed the kids up and headed southwest.

Months ago, the news had reported that Hopkinsville, Kentucky, a town further south, would experience one of the longest times of total eclipse. Madisonville was just on the top end of the path. As the days drew near, you couldn’t go anywhere without hearing folks making plans to attend the path of totality in Hopkinsville. Hoping to avoid the traffic snarl, we opted to head to Madisonville.

We arrived at 11:30 am local time on the campus of Madisonville Community College. A consultant to NASA was mic’d and amplified, talking to the crowd about the eclipse, and having a telescope projected onto a screen. It being a balmy August day, we were grateful for the hospitality of Madisonville CC opening their buildings doors to allow respite in the air conditioning and access to clean restrooms.

Eclipse Father & SonThe eclipse began around 12 pm, with the front edge of the moon entering at the one o’clock position on the sun. For the next 80 + minutes, anticipation grew as the moon increasingly covered the sun. Viewing through the eclipse glasses, and my son viewing through goggles with Welder’s glass 14, a gift from our host and friend Katrina whose mother taught at the CC, we gazed heavenward periodically over that hour plus time period. We watched as the moon progressed past the midline of the sun, transforming the sun into a crescent, a shape otherwise associated with the moon reflecting the sun’s light.

The world seemed to quiet down as the time for totality drew near. Not just the crowd, but the sounds of nature went silent. Then, over the loud speaker, the NASA consultant began the countdown to when we could take off our glasses “10 … 9 … 8 …”. When he hit “1,” everyone removed their protective glasses and looked upon the eclipsed sun. The picture above is from NASA and shows the hint of pinks and blues around the corona. I looked around the horizon to see a near 360 sunset of pinks and oranges. Pinpoints of light showed up as the seconds passed of stars and planets being viewable in early afternoon. A large “whoop” and holler went up from the crowd, people broke out into spontaneous applause, the couple next to us had driven down from Chicago and were smiling from ear-to-ear. James and Juliet let out a gasp, exclaiming “look, look,” and “this is so cool.”

And then, after just 100 seconds had passed, the loud speaker boomed “GLASSES ON” as the total eclipse passed and the moon began its exit across the face of the sun. First, a reverse crescent from just two minutes before, and then growing over the next 80+ minutes until the moon was no longer visible and it seemed like another normal afternoon.

Sunshine, eclipse, and Down syndrome

On the way back home, and since then, I’ve had reason to think about the event, trying to burn it into my memory like the light would have been burned into my retina had I not wore the protective eye wear. Given the focus of this blog, my mind turned to the metaphor the eclipse may serve for how the world is treating Down syndrome.

It is common for those involved in advocacy of any issue to focus on the bad aspects, those issues in need of remedy or repair. But let me begin with all the so much good that the world has done for those with Down syndrome. Think of this as the bright light of the sun shining forth.

When my daughter was born, my only association with Down syndrome was of a young man who was institutionalized and non-verbal that attended our church with his elderly parents. From this sample size of one, that was the image I had for the future for my daughter, Juliet, when she was born in 2004. Little did I know (in keeping with the astronomical theme of this post) that that image of Down syndrome was akin to seeing a star that had burned out by the time its light had traveled to my eyes.

RatJuliet just began 7th Grade. After the first week, she was telling me all about her friends from 6th grade who were in her same section in 7th grade; who her homeroom teacher was; and what teacher is the early favorite for this year. Friday of the first week, she attended her first lock-in sleepover with other teenage and adult girls at Down Syndrome of Louisville (DSL)–there were at least 20 in attendance with 10 volunteers who endured a sleepless night to make memories of karaoke-ing, mani-pedis, and watching the movie “Sing.” Juliet shared all the fun she had with her friends at DSL. And, after the eclipse, Katrina’s mom showed the kids her lab, with Juliet blurting out when Marlena brought out a rat her students had dissected “dis-GUST-ing!”

Juliet, and so many more like her, are able to enjoy life in a more fully involved way thanks to the progress that has been made culturally, societally, and politically. Institutionalization is now the exception not the norm; children receive federally-mandated subsidized early intervention from birth to age 3; Juliet and others enjoy inclusive education thanks to federal laws like IDEA and enlightened administrators like the principals she’s been fortunate to have in elementary and now middle school; her adult friends at the lock-in enjoy working in the community and participating in day programs with continuing educational offerings; and, more and more are living independently or semi-independently in the community through federal, state, and non-profit programs.

The light has never shined brighter for a life with Down syndrome.

But, passing over that light is the occlusion of how prenatal testing is currently being administered.

Headlines leading up to the eclipse regarding Down syndrome were not as hopeful as the initiatives and progress I just recounted. Instead, there were headlines out of Australia, then New Zealand, and most recently out of Iceland that mirrored headlines in the most recent years from Denmark and reports from France and Switzerland on how those countries were on the cusp of “eliminating” Down syndrome through prenatal testing and selective termination. Such “elimination” efforts, however, are the result of long-reported inadequate training and understanding about the latest advances in prenatal testing, insufficient counseling pre- and post-test result, and unjust subsidization of prenatal testing costs, but not the costs for the equally recommended accompanying information and support resources expectant couples are supposed to receive with a prenatal test result.

And, so, this darkness (in tone, ignorance, and, for some, bigotry) is blotting out the bright future for those lives with Down syndrome and, what research has shown, the bright future for all of us for living with people with Down syndrome.

Universality and transiency of the eclipse

CBS News, on the eve of the solar eclipse, featured a segment about an astronomer who was biking the path of totality. He was biking due to a stroke keeping him from being able to operate an automobile. He was asked what it was about the eclipse that he thought so important that it had grabbed the attention of so many. The astronomer answered,

“The universe is the only thing I can think of that is truly universal; it unites us in a way that nothing else [does]; it’s something bigger than we are; and it’s free for all of us, all we have to do is look up.”

While a tautological statement, it is also true. Madisonville, in a play on its name, had titled its celebration of the totality “Solar MADness.” Arriving at the campus, you couldn’t find a negative, cynical, grousing person. Everyone was enthused, welcoming, and glad to be sharing in a moment with everyone else. While groups had claimed bits of shade, no one turned a cold shoulder to “protect” their little space. We all looked up as one and marveled as one as the sun and the moon became one to our naked eyes. I’ve thought since then how that feeling of one-ness, commonality, in sharing in the same experience, was a bit like the reverse of how the astronauts felt looking from the moon onto the blue marble of Earth, appreciating we are all on the same planet, all one people.

Hopefully, perhaps, we may all turn our eyes toward the growing light of a better, brighter future for those with Down syndrome, and, in turn, a brighter future for ourselves.

  • As more expectant parents and treating OBs are of the generation that sat next to a child with Down syndrome in school who was their friend; who they had invited to their sleepovers; who they supported when volunteering at Special Olympics or cheered with them as part of the High School cheer leading squad;
  • As more employers see the positive net effect of including those with intellectual disabilities alongside their existing workforce; and,
  • As more policy makers choose to require providing the balancing information recommended to accompany a positive test result by professional guidelines and appropriating parity funding to fund those resources

Hopefully, then, this darkness of how prenatal testing is currently being administered will be seen in the lens of history looking back as a transient moment, just like the moon crossing the face of the sun. And, then, the light will spill forth with us all appreciating that we are all here together, one people, caring for one another.

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