Steve Brown

Days of Awe and Down Syndrome Awareness

It’s Down Syndrome Awareness Month. I wish it were Down Syndrome UN-awareness Month. We don’t have a “Jewish Person Awareness Month” to let folks know that, by Jove, there are Jewish people out there.  After fifty seven hundred plus years and a best selling book about the tribe, maybe that’s not as necessary. Then again there’s nothing new about disabilities. Or is there?

As the parent of a twenty five year old with Down Syndrome, my goal is to live my life as unaware as possible of my son’s differences. And I find the people we meet when we are out and about are best left a bit in the dark. Josh is bright and articulate and may have a different way of looking at things and a different rhythm or set of preferences as to how to relate. But I like to ignore whatever hurdles “abled” people may have to relating and let them work it out for themselves. Because they can.  When a waiter at a restaurant asks me “what would he like?” or when we meet someone new and they ask “how old is he?” un-awareness works best: “I don’t know, ask him”. I enjoy how pleased folks  are to make that connection.

I’ve never written about Down Syndrom being a parent.  I have no special expertise on the subject. My wife has been an educator and a principal who made sure Josh had fantastic education with full inclusion, and has been his dedicated advocate.  My daughter has a masters in special education who knows more technically about putting together a plan for special needs people than I ever will. All of which helped Josh with wonderful strategies for success in life. This has left me free to perfect my un-awareness.

Of course, I am being ironic for affect. There is a need for more awareness during this Down Syndrome Awareness Month. When Josh was born, I looked for both practical and spiritual direction for our life together. It was hard to find. Leviticus 21:17 says that no Levite with “a defect” is permitted to make an offering. But Jeremiah (31:8) saw a vision that God would regather Israel “from the remote parts of the earth, among them the blind and the lame”, so that Israel would have to be a nation that took care to include those with disabilities. To put that into context, in the ancient world, disabilities were seen as a curse, shunned and maligned. We see an image of that today in third world countries, where the disabled are openly scorned: the blind have rocks and taunts thrown at them in the street to keep them at a distance, the intellectually disabled are hidden away.  King David insisted that his late friend Jonathan’s crippled son dine regularly at his table.  The son, Mephibosheth, had his inheritance stolen and society had no reservation in treating him “a dead dog”, the phrase he uses to describe himself.  David shattered a dark and probably accepted taboo by inviting him in and ordering his inheritance restored in 2 Samuel 9.  It would have set an example to the entire nation of inclusion at the highest level. It makes me love King David as much as any lofty Psalm could.

Before my son was born, I had never had the opportunity to meet anyone with a disability. Maybe you never have either. In my baby boom generation, the “disabled” were not included in schools, or in the workforce. We didn’t throw rocks at them like evil eye fearing ancients, but they certainly were stigmatized. I had no idea how to proceed as a new parent, spiritually or practically. I knew my newborn was “fearfully and wonderfully made” as David says in the Psalms about the unborn. I remember looking up “Down Syndrome” in the estimable book “What to Expect When You Are Expecting”, the authoritative parenting bible, thinking it would provide direction, only to find that the only references to Down Syndrome in that 1990’s edition were abortion options. Ghastly.

Since those early days, I’ve found out a few things that might expand your horizons in this Down Syndrome Awareness Month.

People with Down Syndrome are surprising. Josh taught himself to read at four, memorized all the flags of all the world’s nations from a book on his own when he has eight. We only found out visiting the Kennedy Center in D.C. which has a hall with all the nation’s flags hung from its walls. None of the flags are labeled. Josh pointed up and said “Look, Papua New Guinea!” and proceeded down the line.  At his bar mitzvah (yes, he ran the service) we put world flags on the tables at the reception and made a game of ID’ing them.  OK, it wasn’t fair.  He is a voracious reader and reads the newspaper cover to cover every day, including the weather… everywhere.  Want to know if you’ll need an umbrella in Sao Paulo?  His chickens won best in show in the county 4-H contests, twice.    He works for a municipality and has his own office where he does data entry, with a support person half a day and half a day on his own.  He knows everyone by name from the Township Manager and Police Chief to the guys who work on the road crew.  He surprised us by bringing home an employee of the month award.  He and his coworkers have a wonderful relationship and I wonder who benefits most.   Am I bragging?  Maybe.  I mostly want you to get a sense of the blessing he is, that all people with Down Syndrome can be.

People with Down Syndrome are unique.  Please don’t tell anyone in my family that “people with Down Syndrome are so (fill in the blanks with your preconception of choice…) happy, loving, bring out the best in others”. Stereotypes are a losing proposition in life, don’t use them.  Josh loves California and tells everyone, including no-nonsense Israeli customs agents, that even though his passport says otherwise, “my family is from Philadelphia, I am from L.A.”.  When we go to see my beloved Phillies, guess who’s wearing Dodgers gear head to toe sitting next to me. Don’t try to figure out or pigeon hole folks with Down Syndrome: come along for the ride, nod with inner satisfaction at how wise you are to just be surprised.  If you follow baseball, you know which one of us is happier about our choices right now.

People with Down Syndrome need support. I heard a great story of a father and a son with Down Syndrome who told his own father that “I’ve come to terms with the fact that he won’t win a Nobel Prize”. The dad’s father said “I too have come to terms with the fact that YOU won’t win a Nobel Prize”.  People with Down Syndrome do wonderful things and live full and productive lives. But yes, need patience and support.  From you.  Children with special needs are helped immensely with individualized education plans through high school, after which the “system” ends for them and families are left to their own resources to help their children find a path forward in life. 6.5 million Americans have intellectual disabilities.  Almost 60% of Americans with intellectual disabilities (ID) are not in the workforce.  And folks with ID often require accommodations to participate with their non-ID peers.  Understand that their inclusion will not always be perfect.  But “perfect” is not all it’s cracked up to be.

People with Down Syndrome are… Cool.  You always wanted to be one of the cool kids.  If you will make extra time for the interactions to breathe and develop at their own pace and don’t try to insulate yourself from your fear of failing or not having all the answers on how to interact with someone you might not understand, or worry about feeling out of place, you will discover an extraordinary fellowship with people with Down Syndrome and the remarkable folks who love and care for them, as I have.  I am immeasurably richer for it. And if you invite us to your wedding or bar mitzvah,  Josh will get everyone to dance, any style you like.

Arthur Miller, author of “Death of A Salesman”, lived an incandescent life full of accolades. He was married to Marilyn Monroe, had beautiful and accomplished children, was acclaimed for his opposition to the Vietnam war, and was heralded as “the moralist of the past American century”.  He also had a son with Down Syndrome whom he had “put away” at birth in an overcrowded and dismal state institution.  He never saw him, spoke of him or wrote about him until he was close to the end of his life.  It’s a tragedy, wrapped in a dark cloak of neglect that Miller himself never reconciled or maybe even thought to regret.  It chills me to the bone to think of a life full of accomplishment that failed his own flesh and blood so completely.

I started by asking if there is anything new about disabilities. There is: the increasing inclusion of folks with intellectual differences into everyday life. This Yom Kippur, as we reflect on the Al chet prayer’s line about sins of omission, may I suggest that the act that atones for it is the blessing of inclusion.  You will have to make an effort: this inclusion may not come to you on its own.  Down Syndrome Awareness Month overlaps the Days of Awe, when we say that the Book of Life is open. That reads well rephrased “The Book of Life is openness”.

A disability advocate used a phrase that changed my life: “Life is what God says it is”.   It’s a great time to be amazed by the mosaic of creation and advocate for inclusion, nurturing, accepting and even inviting in folks with one extra chromosome in every cell of their body: our family, our friends, our neighbors with Down Syndrome.

About the Author
Steve Brown is a registered architect and has headed an architecture, environmental design, and construction firm in the Philadelphia, PA area since 1985, whose recent work includes several Net Zero Energy projects.