To celebrate World Down Syndrome Day (on 3/21 for three copies of the 21st chromosome), I am sharing a speech I gave at my synagogue during a Jewish Disabilities Awareness and Inclusion event about something I live for:
Including people with disabilities.
I was invited here to give you a glimpse into my role of being a parent of a child with disabilities and to suggest that being an ally to people affected by disability begins with a shift in perspective.
My youngest son was born with an extra 21st chromosome, a condition commonly known as Down syndrome.
Having a person with Down syndrome in one’s family comes with many perks – and also challenges.
Fortunately, challenges turn into strength. Having nearly lost my medically fragile child will never not feel raw. The flipside is I never forget to delight in and honor the boy I got to keep.
Because my family’s been through a lot, we have learned to be resilient, appreciative, and open minded. We remain unruffled around those who seem different. We are quick to celebrate life’s special, ordinary moments.
When my first-born eagerly swallowed puree off a baby spoon and signed his first word, “fan,” I called my mom, so she could kvell with me. It was like having a little party.
When Raphael, who has Down syndrome, first stood up for two whole seconds, we felt like throwing a parade.
Watching human development happen in slow-mo can be nerve racking because there is so much unknown ahead.
It’s also a joy. Terrifying and liberating at the same time.
Infants and toddlers typically grow quickly, but I got to enjoy having a baby for a long time.
All the while, there have been loads of extras to juggle. Parenting, as many here tonight know firsthand, is not easy. Raising a child with special needs is parenting on steroids.
Now that Raphael’s health is mostly stable, I fight for him to have the same opportunities as any other kid. I want him to build lasting friendships and get an education that leads to a productive, meaningful life. I say fight because it often is. We’ve been turned away.
But the sting of discrimination is not always blatant. The local charter school tells me that it might not be a good fit for one of my sons.
When a swim instructor places my boy in the class for toddlers, ableism has kept her from thinking of ways to include Raphael with peers his own age.
Before Raphael, I chose my bus seat far from the drooling man making uncomfortable noises.
When I couldn’t understand the mom with cerebral palsy talking to me at the park, I just smiled and nodded.
Since Raphael, I’ve learned to embrace curiosity, and I ask her to repeat her words until I understand.
There is much to gain by moving closer to those who act differently, but we’re masters at avoiding the discomfort that comes with it.
When I sign up my son for activities, people hesitate and point me toward their supervisor because it’s easier to assume it’s someone else’s role to help than it is to ask me directly what we need for my child to fit in.
I don’t expect people to consider every potential human need and try to meet them all. I do want people to assume it’s their job to open themselves to asking what’s needed, even when they may not be able to provide it.
I want to be more welcoming.
I recommend we explicitly invite people in our lives to tell us what would support their inclusion. I’d rather be asked what I need, even when I don’t know the answer, than fade into the shadow of otherness.
I admit parenting is a distinct chore for me compared to moms of typically developing kids. My child needs intensive support with dressing, washing, and other activities of daily living. We constantly have to adapt Every. Little. Thing.
It is difficult, and also, I believe, what any parent would do.
If your gut reaction is to disagree, maybe you are defining me solely by our differences. In reality, we are more alike than different.
Let me share the lesson I keep learning in this journey: The hardest part of having a loved one with a disability is those who aren’t disabled.
When I bring my boys to Friday night services, Raphael steers me to the front row (even when we’re embarrassingly late). He sings Hebrew-ish off key. Loudly. He pulls out his air guitar and joins Holli, playing his invisible instrument and dancing awkwardly.
We get dirty looks.
We get just plain puzzled looks, too.
I’ve learned to expect it.
I turn and lock eyes with the child or adult staring at us; I nod and smile while singing along. Most of the time, folks melt at this silent invitation to just go with it.
In many ways, the Jewish community does inclusion right. We know what it means to welcome a stranger.
There is plenty more to do.
During Raphael’s first few years, I was drowning. I routinely worked after my kids fell asleep until two in the morning. My husband stressed over his job because we needed the reduced health insurance premium that came with it. I searched for assistance.
Jewish Family Services and the Jewish Disability Network seemed like reasonable places to seek help. Each voicemail I left those organizations felt like another failure. Someone would call back and offer a different resource I should call. But when I did, the same thing happened. After a while, I gave up.
Giving someone who is struggling a resource to investigate may be the last thing she needs. I needed a person who would be a resource, ask questions, listen, acknowledge, and help come up with potential answers, together.
Reaching out for help takes guts.
So does answering the call.
I learned early in my parenting journey to expose my neediness: to ask for help and to say “yes” to any offer of assistance. I got that it takes strength to show vulnerability.
I invite you to open yourself to finding a Yes when it comes to supporting people with disabilities.
A few years back during Jewish Disability Awareness and Inclusion Month, autism spokesperson Temple Grandin spoke here along with a woman who described her struggles with her disabled child. Her son screamed constantly. For years. Can you imagine?
After the speakers finished, I talked to a friend in the audience. She asked me how to be an ally for families of a person with disabilities. I replied that when my kids were little, I wished someone would have asked us to a Jewish holiday meal. I didn’t have it in me to prepare a Passover Seder in those early years.
She bristled, “What am I supposed to do? Invite a screaming kid to my house?”
Only recently have I come up with the correct response.
Be open to Yes. Make space for what repels you.
Instead of remaining comfortably separate, ask the mother of a screamer how she handles it. Explain why you’re leery of inviting her. Perhaps she would appreciate a challah delivered to her door. Maybe she could use care for another child.
If we’re not willing to get creative, not courageous enough to brainstorm ways to include, maybe we are unwittingly excluding.
Disability is a natural phenomenon. Expect it; leave room for it.
At day camp pickup last summer, I chatted with the mother of my kids’ fellow camper on the Har HaShem playground. She told me her little girl asked about Raphael’s differences. She wondered what to say to her daughter.
I was thrilled for the opening.
I told her to explain that people grow at different rates and sometimes people need help with different things. I suggested her child could talk to my son and play with him.
I often say, “inclusion is a verb.” It is not enough to accommodate people with disabilities. The more important work is for the nondisabled to do.
We can connect with those who are different. We can question our kneejerk assumptions. Avoid empty platitudes like: “Let me know what I can do to help.” Instead, consider what would help you if you were in another’s shoes, and do that.
I am figuring out this parenting-a kid-with-disabilities thing every day.
I hope you’ll be open to figuring it out with me.
Go here to watch the video of my speech. (I begin at 15:20 and end at 23:53.)