Just less than thirty years ago, I was handed a book written for parents of a new baby with Down syndrome that began with, “Do not put your baby in an institution.” Literally, this was the first line of the book.
Still, a social worker asked if we were “taking the baby home.”
Today I know women who coach doctors and nurses about how to share information about possible, potential, and available, instead of “put away.”
Be Beautiful, Be Yourself
Last weekend Marcus and I attended an important event hosted by The Global Down Syndrome Foundation, an organization founded out of the emotional and intellectual collision of love and anger. Many of us relate to this emotional state. More than once, conversations over the weekend included the phrase, “We’ve come so far, but there is still so much more work to be done!”
In 2018, Marcus walked the runway on the 10th anniversary of the BBBY Fashion Show, the biggest fundraising event in the world for research and medical care affecting the lives of people with Ds. It’s also an incredibly empowering and uplifting night for the models, their celebrity escorts, and the audience.
The next morning, at the restaurant attached to the very hotel that hosted this event, a waitress asked me if Marcus needed a children’s menu.
Lasers shot from my eyes when I replied, “No. He does not need a children’s menu, in fact he’s probably considering a margarita.” I may have burned a hole through the wall, all the way to the street, with the look I shot her way.
Now, to be fair, the young woman returned and apologized. That took some guts since, as I said, my reaction was not subtle. Still…so far to go.
This last weekend when we arrived in Denver, I chatted to the person at the rental car counter about the event. He proceeded to assure me how every “Downs Person” he’s met is “always happy.”
I confirmed to him that is, in fact, not always the case, and Marcus clearly shares when he’s not happy.
So far to go.
Funding and Research
And these are small, small issues (micro-aggressions is the term) compared to the institutionalized negligence, including the dismal appropriation of federal funds for research and medical needs of people with Ds.
This year, Michelle Sie-Whitten shared from the stage, “This year was a banner year for Global, With support from our Congressional Champions and leadership at the National Institutes of Health (NIH), we have successfully advocated for a near-tripling of the federal government’s research budget benefitting people with Down syndrome.”
And yet, Down syndrome is (still) the least funded major genetic condition by our National Institutes of Health despite being the most frequent chromosomal disorder. The work of Global and the advocacy of their partnerships and allies have made a huge difference in the last several years, and they are committed to continue the work, as there is so much work to do.
There have been battles on behalf of Marcus with school(s), doctors, and other professionals over the years. Some we “lost” and some we “retreated.” Marcus and I each became a little more savvy about our advocacy with each experience.
Amanda Booth and her husband, Mike Quinones, have used their platforms to openly share their journey as parents, their joys and struggles, with a strong focus on acceptance for their son, Mikah, and all people with Down syndrome. Amanda was honored at the event in Denver with the Quincy Jones Exceptional Advocacy Award.
In her speech she shared:
“To the parents who came before me that fought so that my child could have an education.” (I thought about all the families who still, STILL have to fight for an appropriate education for their children.)
“And the parents who came before them, that fought to take their babies home from the hospital.” (I thought of Jamie Brewer’s incredible performance in Amy and the Orphans, and of the compelling stories told by Tim Shriver and his family’s work and passion for inclusion, which starts at home.)
“To the parents who show up to therapy, to the parks, and to the classroom with no award, I share this award with you.” (I’m not crying, you’re crying.)
The good news is: There are allies, longtime friends, and fellow advocates who continue to lock arms, teach others, and speak up for change. We feel less and less alone. Most days, we hold hope for the future, but still…
So. Far. To. Go.