Why is the Grass Always Greener? Supporting Every Individual and Family.
I wanted a Huckapoo brand shirt. It was the 1970’s, when those multi-patterned and brightly-colored shirts were the rage. They were expensive. My father was a congregational rabbi with four children, all enrolled in Jewish day-schools, and my mother was a stay-at-home parent. Huckapoo shirts just weren’t in the budget.
An example of a Huckapoo shirt from http://www.vintagetrends.com/
“If I just had one Huckapoo,” I reasoned with my mother, “everything would just be better.”
It was 7th grade and I had just switched schools, travelling 30 minutes to not just a different neighborhood but a more sophisticated zip code. On the first day, when I looked around the schoolyard and compared myself to the other girls, I knew I had some catching up to do.
Fitting in, I soon discovered was going to be complex. My father was a Conservative Rabbi and I was a commuter from a different geographical area relative to the school’s location.
Easy acceptance into the right group was not going to be bought with one shirt, although I never stopped hoping.
The Huckapoo shirt story popped into my head on a recent visit to my health provider’s main office in downtown Jerusalem. My husband and I were reviewing a payment for an emergency ambulance ride with our youngest son some time ago. While assessing our paperwork, the person helping us noted Akiva’s diagnosis, Down syndrome, and said “he’s not in the system.”
That has to be one of my favorite lines as parent to Akiva. “He’s not in the system.” Seriously?
Akiva is almost 17; he’s enrolled in a special education school, receives a stipend from the National Insurance Institute based on his disability and is recognized through the Ministry of Welfare as receiving services.
Incredulous, we had her check. Nope. Not listed as having Down syndrome. I mentioned that he actually has a dual diagnosis of Down syndrome and PDD – NOS, on the Autism spectrum.
“Oh,” she said, with an exultant tone. “You know, if he has Autism, he’s eligible for many more services than if he just has Down syndrome.”
Just has Down syndrome! Another moment of incredulity.
She then proceeded to show us the expansive list of what he could receive with the “right” diagnosis.
In 2014, Autism is that brand-name shirt, that Huckapoo that I never got. The diagnosis that insures you the proper cachet and instant acceptance into the right group, a clique filled with families, children, teens and adults with ASD, or Autism Spectrum Disorder.
And while they may wish their child didn’t have said diagnosis, they tend to group together, with those who are dealing only with their issues. That’s normal, of course. It’s vitally important to chat with parents experiencing similar things, but really, are we living such different lives?
Is developmental delay or cerebral palsy or whatever your kids’ diagnosis is, so scary that you can’t open your heart up to another parent walking a path not so different from yours? I don’t think so. It’s fear, just like the fear felt by those who haven’t dealt with disability at all.
Life with Akiva has meant that I have new understanding for anyone dealing with a challenge, whether it’s a cancer diagnosis or a broken leg. I get that they are navigating something new, something scary, something that pulls at their understanding of life as they know it.
But the cliquishness that develops in the world of disability just depresses me. Seems like something’s getting lost in the shuffle when we get “sorted” by disability, when we get “injected, inspected, detected, infected, neglected” as Arlo Guthrie put it in his famous song, Alice’s Restaurant. When we, those parents and family advocates, feel we only have the interest and strength for our own problem, as opposed to learning to care about the needs of the whole community of people with disabilities.
And I completely respect those families who’ve advocated for their children with Autism, who’ve fought for better services and won. That’s great! But the division of children, of teens, and of adults into labels – each one tossed it’s bone of assorted services and programs – creates division where it could create unity and empathy for shared experiences.
We need to work together, to join forces, in support of each other, in appreciation of each other’s challenges, of our children’s issues – regardless of perceived functioning differences, regardless of our own personal fears and presumptions. That’s how we’ll build an inclusive community. Together.
By Beth Steinberg, Shutaf Co-Founder