Our Story: D.C. & Traveling with a Child with Down syndrome (2 of 3)

ThStoneThis is the second of three installments about our family’s recent tour of D.C. for the kids’ Spring Break. The first installment provided a rundown of the many sites we visited. This post will share a message for new and expectant parents of children with Down syndrome (but others may appreciate it as well).

As regular readers know, my eldest child, Juliet, happens to have Down syndrome. Those same readers are also familiar with the “Our Story” series of posts and some common messages I share at the end. I will share them again here, and something more.

Miles of walking

We chose D.C. as our Spring Break destination because of my children’s, primarily James’s, drive to get as many National Parks Service passport stamps as possible. By the end of the nine-days journey, James had 107 new passport stamps. So, too, did Juliet.

James’s desire to amass passport stamps borders on avarice, but Juliet enjoys touring the sites almost as much. Of the two, she is the one who usually seeks out the Park Ranger to ask for the Junior Ranger activity book–this is because James makes a bee-line to the passport stamp station.

Anyone who has been to D.C. knows to expect a great deal of walking. The Mall Monuments are spaced out and, on the day we toured them, the Circulator Bus had a delayed start due to the Cherry Blossom 10K. The Smithsonian Museums, while closer together, increase a tourists’ step count with the multiple floors, hallways, and exhibits. And, some freshmen congressmen will tell you about the competition they have with one another over how many steps each took on any given day.

We toured all these sites: the Monuments, the Smithsonian Museum of Natural History, Air & Space, and the National Portrait Gallery. We visited the Smithsonian National Zoo and saw Giant Pandas. We walked Arlington Cemetery. And, we took a tour of the Capitol and the Supreme Court.

Juliet walked every step of the way with us.

We easily walked on average at least 5 miles each day. Juliet would tire by mid-afternoon, but she would walk nonetheless. Usually our troop would become strung out with Juliet bringing up the rear guard, trudging along. But, she’d always get to the same destination, and, once there, would ask for the Junior Ranger Book, marvel at the Hope Diamond, stare up and say wow in the Capitol Rotunda, and climb the steps to the Lincoln Memorial.

I highlight all the walking Juliet did because still parents are told when receiving a pre- or post-natal diagnosis for Down syndrome that their child will not walk. While there are some individuals with Down syndrome who need assistance with their mobility, the percentage who do not walk I expect is nowhere greater than the percentage of the general populace. Rather, the norm is that they will walk, and, as Juliet demonstrated, they will walk a great distance when motivated to get the next Junior Ranger badge.

Hours of talking

Pictured above is a collage of photos from our visit to Thomas Stone National Historic Site. Stone was one of the youngest signers of the Declaration of Independence (seen below under John Hancock’s famous signature).

THStoneDec_LI

Stone was a Maryland lawyer whose family home had been used continuously as a residence until the late 1970’s when it was given to the Parks Service. There we learned of how he and his wife, Margaret, attended the Continental Congress where the Declaration was signed, but how Margaret contracted smallpox. On the verge of death, in a last ditch effort, she was given liquid mercury. While the mercury killed off the smallpox, it left Margaret an invalid. Thomas rarely left her side, caring for her during her final decade of life.

During the tour at the Stone NHS, Ranger David asked for a volunteer. There was another family along with us, but Juliet immediately shot her hand up. In the collage, you can see her being Ranger David’s attentive volunteer as they role play as though Juliet is being tested to become a member of the legal bar, just as Stone had been questioned.

Just as parents are incorrectly told their child with Down syndrome will not walk, many are told that their child will not read and will not be able to talk. While physicians are cautioned about predicting what any person will be able to do (good advice for all of us), on these matters, there is a higher percentage of individuals with Down syndrome than the general population who may not become literate and will struggle with verbal communication. I share Juliet’s volunteering, however, to show that those same physicians could look to her, and many if not most other individuals with Down syndrome, to counsel their patients more accurately by saying some children may struggle with reading, and some may struggle with talking, but others will be literate and will communicate quite well.

Expanding Our Scope of Justice

A final point concerning how we see our fellow citizens.

In the travelogue of the first installment, I shared how we began our trip visiting Booker T. Washington Birthplace National Monument and on our penultimate day we visited Frederick Douglass National Historic Site. Both of these men were born into slavery–into an institution where in the eyes of the law, they were not humans, but property to be owned by those considered fully human, i.e. white men. In reading Douglass’ autobiography, he graphically describes the whippings his fellow slaves endured, but describes it with such a matter-of-fact manner because it was something done every day for years by a white man against a black man or woman–and it was seen as “normal.”

Immediately after visiting Booker T. Washington NM, we visited Appomattox Courthouse National Historical Park. There was where Gen. Lee surrendered to Gen. Grant, beginning the end of the Civil War, a war fought and supported by literally millions of those living in the Confederacy to perpetuate the abomination of slavery.

From Douglass’s home overlooking the Anacostia river, we drove back into downtown D.C. to the Belmont-Paul Women’s Equality National Monument, just blocks from the Capitol. Here was where the National Woman’s Party began their more confrontational campaign for the passage of the 19th Amendment. That Amendment was necessary because at the time, and for ages before, women were not seen as equals to men. The NWP had to stage marches, face imprisonment, and endure hunger strikes to demonstrate the injustice of denying women the right to vote.

With the Civil War ended, and the passage of the 13th, 14th, and 15th Amendments, Douglass joined with the suffragette movement for women’s equality. Below is a quote explaining why he expanded his scope of justice to advocate for women’s equality:

FDouglassInjustice

Douglass’s appreciation that, having won a measure of justice for African-Americans, there remained injustice still that should be addressed is echoed in a quote at the Martin Luther King, Jr. Monument.

A hundred years after the ending of slavery, African-Americans still were denied equal treatment, no matter the guarantee of the 14th Amendment. A new movement began with MLK as its leader. With the passage of the Civil Rights Act and the Voting Rights Act in the mid-’60’s, King did not stop advocating for those who were victims of injustice. Similar to Douglass, he expanded his focus from beyond his race to all who were the victims of poverty. Etched into his monument is a succinct echo from the realization Douglass had of belonging to a common human race:

King Birmingham Jail quote

The genomic age makes Douglass’s and King’s appreciation for the commonality of mankind even more scientifically based. The mapping of the human genome and genomic testing has shown that while we are all uniquely made, we are also all alike. Advances in the realm of prenatal testing have been used to identify certain genetic conditions. But the addition of a 21st Chromosome does not make individuals with Down syndrome any less human than the duplicate of the X chromosome makes women any less than men or the genes associated with a person’s skin tone renders one shade superior to another.

Yet, this appreciation continues to elude many, even the most learned and those considered most wise.

Referring back to the first post, you’ll find a picture from the Supreme Court of the bust of Justice Oliver Wendell Holmes, Jr. alongside a picture of his grave in Arlington Cemetery where my kids can be seen in the far background. Justice Holmes fought on the side of the Union and authored many well-respected decisions. But, he also wrote the majority opinion in Buck v. Bell where he upheld the involuntary sterilization of Carrie Buck because, in his immortal words, “three generations of imbeciles are enough.”

That decision was rendered over a hundred years ago. But, still, educated men will flippantly say the moral thing to do when learning that a fetus has Down syndrome is to abort and start over. A physician will tell new parents that letting a baby born with Down syndrome and a disconnected esophagus die a painful death by not having the necessary surgery is better than if they let the child live. And obstetric practices, largely out of fear of a wrongful birth lawsuit, will counsel patients when delivering a diagnosis that they can have an abortion that same day.

It was normal at one time to see a white man whip a black man and that be not only legal, but what one does to “property.”

It was normal at one time to view women as incapable of exercising the same level of judgment as men necessary for casting a vote.

And, it was normal to have separate drinking fountains, bathrooms, and seating areas for blacks and whites.

All of what had been considered “normal” has since been shown to be head-shakingly, astonishingly, gross offenses of injustice and maltreatment against our fellow man and woman.

In the context of prenatal testing, such clear right-and-wrong appreciations can be blurred due to the various views taken on the issue of abortion.

But, hopefully, what will soon be looked back upon in the future and seen as an injustice is the pressure and prejudicial way in which expectant and new parents are counseled about what they can expect from their child with Down syndrome. Hopefully, in the future, these parents will be accurately counseled, and then they may decide as they wish, but with an appreciation that a person with Down syndrome is first a person, equal to the same respect and rights as women, African Americans, as all of us.

Comments

  1. Amy Van Bergen says:

    Excellent points!

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