The reluctant parent advocate: Stop ignoring my son

“I always wished my son could say I love you,” Debby said to me, her tone somewhere between matter-of-fact and wistful, as she watched Akiva frolic in the pool.

It was Saturday night. Along with a parade of locals getting in their post-Shabbat laps, we were splashing around with Akiva, who spent much of his time saying hi to his fellow swimmers, when not discussing why we were in the indoor, not the outdoor, pool, and when the water slide would be open — um, Pesach?

I took him for some rides, and worked on his kicking and floating. He used to have better pre-swimming skills, but we stopped swim lessons when his afterschool schedule changed a few years ago. He swims at one of his afterschool programs — but it’s a group activity, less concerned with swimming skills and more about having fun together.

Pool fun at Camp Shutaf Summer '15
Pool fun at Camp Shutaf Summer ’15

Later, in the changing room, I chatted with friend and pool regular, Debbie Duitch. Her son, Gershie, now 21, has Canavan Disease, a genetic, degenerative, devastating-to-development neurological disorder.

Gershie, who has never been able to speak and verbally share the love he feels for his family — I’ve seen his smile light up a room, especially when his mom, dad and two sisters are in it — represents that other side of disability today, the one that the self-advocacy movement struggles to fully understand and reckon with — the needs of those who can’t advocate for themselves. At all or only in part.

And not because his parents haven’t wished he could.

Self-advocates often look askance at parent-advocates making life decisions for their adult children with disabilities who can’t easily express their needs and wishes. They worry that the individual-with-disabilities adult wishes aren’t being fully allowed or recognized.

They may be right. But in truth, social services for those with greater cognitive or physical disabilities hasn’t exactly made it easy to shift the needle from parent to self-advocate or something in between, what I’d call thoughtful team-advocacy.

Take us for example. Akiva, who is now 18, is being re-evaulated for adult services. What his eligibility for services will be, as well as most importantly, his monthly stipend from the government. The decisions being made will most likely affect his rights to inclusive living in the community — because he’ll be seen as a person in need of more assistive support, thereby limiting him to a more institutional setting.

Don’t we need to step in and advocate if he can’t?


The process (I wrote it about it here and here) has felt both absurd and insulting — to us and to him. Assessing his future at 18, when we’re talking about someone with complicated cognitive delays, doesn’t completely make sense, especially when it’s done without meeting him in any of his familiar settings, or in concert with his teachers and school social worker, people who’ve taken a careful interest in his present and future, along with his parents, for years.

We were told it isn’t done that way. That would be influencing the outcome. Say what?

How about this one? Not a single government-tester, evaluator, psychologist, etc, has asked Akiva what he’d like. What he cares about. What he loves.

Nor have they bothered to explain, either to myself and my husband, or to Akiva, how we can lay out a plan for his future in the community, including continuing education, housing, employment, dating and sexuality, let alone his development into a self-advocate wherever possible in adulthood.

Heck, they’ve barely spoken to him, relying on snippets of limited conversation, in settings unfamiliar to him, with little time taken to truly get to know him. Akiva, a keen judge of character especially when it comes to individuals whom he senses aren’t really interested in him, tends to either be barely social, or overly so, looking for a bit of reaction.

Autistic self-advocate, writer and public policy change-maker, Ari Ne’eman, has written thoughtfully about the difference of opinion between parents and self-advocates on issues related to self-determination and adulthood, as well as the need to avoid what in the past felt like “parent leaders were writing us out of our own stories.”

He’s right. Parents do need to be careful, but there’s so little guidance. Ever.

Parents are often seen either as heroic, that is, for raising our children who have disabilities, a fairly useless and insulting way of looking at parenting, or overprotective, especially by teachers who feel we baby our special children, preventing them from developing into independent individuals. Or, we’re to blame for our children’s issues, to quote Bruno Bettelheim’s much maligned and debunked claim of the “refrigerator mothers” who caused their children’s autism. Then, there’s me, irresponsible for giving birth to a child with a known disability, detectable and ‘abortable’ in utero.

We learn our own path towards self-advocacy, working hard to make the world right for our children — fighting tooth and nail for them, always fearing they will be abused or unappreciated  or not given the acceptance and rights they deserve.

Let’s create a new conversation between the adult self-advocate and the parent-advocate. Let’s not be afraid to work out the issues that scare and seem to divide us. Not unlike the self-reflective conversations that I have with people hesitant about full inclusion, and why people with disabilities have the same rights that they do, this is one where we need to be open and honest as well as appreciative of each other’s backstory and life experiences.

Let’s all sit in the “Room where it Happens,” to quote from Lin-Manuel Miranda’s brilliant, Hamilton: The Musical. Aaron Burr, expresses his lifelong frustration at always being left out of the important conversations. The game changing ones where a little quid pro quo can mean solutions to life’s bigger problems.

This? It’s our discussion. Let’s have it, once and for all, together.

Company: We want our leaders to save the day —
Burr: But we don’t get a say in what they trade away
Company: We dream of a brand new start —
Burr: But we dream in the dark for the most part
Burr and Company: Dark as a tomb where it happens
Burr: …Oh, I’ve got to be in
The room where it happens…
I’ve got to be, I’ve gotta be, I’ve gotta be…
In the room! Click-boom!

About the Author
Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change. Beth is also the Artistic Director of Theater in the Rough, engaging audiences with free summer Shakespeare.
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