Siblings of People with Special Needs: Next Steps in Disability Awareness Outreach
January 6, 2009
Community | Jewish Living
(1 comments)
By Rabbi Paul J. Kipnes
Our Congregation Or Ami (in Calabasas, CA), like so many Reform Jewish congregations, spends significant time and energy embracing and supporting families with children with special needs. We are proactively welcoming, because our tradition teaches us that we all were created b'tzelem Elohim, in God's image.
Taking our lead from the Union for Reform Judaism's Disability Awareness initiatives, we have come to understand that "with special needs children, there are two values being played out, simultaneously. Working with one child, Brandon Kaplan, for instance, we saw that Brandon is a kid like any other kid created in the image of God, worthy of love. But Brandon is also a special kid and there is an honor and joy to the congregation that he participates to the fullness of his abilities. So he's normal and special, but here's the secret: so is every other kid."
Often though we focus on the needs of the person with special needs, or on the struggles of being his/her parent. We welcome special needs children into our education programs and kvell as they become B'nai Mitzvah. Our Or Ami Center for Jewish Parenting sponsors a support group for people with special needs.
Now comes the New York Times reporting on NPR's poignant account of the experiences of the sister of a boy with autism. The article, and story, Coping with an Autistic Brother: A Teenager's Take, is powerful listening. It reminds us that the constellation of those touched by disabilities is far wider than we often consider. It goads us to explore more deeply how we reach out - really reach out - to all those affected.
The New York Times' Well blog reviews the story:
The piece focuses on 15-year-old Marissa Skillings, whose 11-year-old brother Andrew has Asperger's syndrome, a form of autism. Marissa talks about the challenges of living with a brother on the autism spectrum.
He talks nonstop; talking and talking and talking. He'll tell anybody information about any animal whether they want to hear it or not. People can tell Andrew has a disability....When he gets nervous he moves his hands back and forth.
Having a brother with autism takes a toll on Marissa's relationship with her parents. Her brother often interrupts and makes it difficult for her to receive attention. Sometimes she stays out as late as her curfew allows so she can avoid time at home.
I come home and deal with it when I have to, and when I don't have to deal with it, I make sure I don't.
She and her brother tell the story of the time a neighborhood boy picked on Andrew. She chased the bully down the street, cornered the boy and slapped him.
I don't hate my brother. I'd kill for him. But I could kill him too.
Read/hear the NPR story (and see pictures of Marissa and Andrew here.
I was astounded after listening to this story. With all the good work we do, here is another important area in our outreach to families of people with special needs that we haven't really focused on yet. Although our tradition teaches "lo alecha ham'lacha ligmor - it is not up to us to complete the task," we do need to explore each challenge as we become aware of it. So this story has led me to ponder three questions (perhaps you can help me learn and respond):
(1) What would congregational support of the siblings of people with special needs look like?
(2) Do any siblings have any suggestions for us?
(3) Are any synagogues doing this already?
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My sister is severely disabled and similar to the NYT article, it is inevitable that the disable child receives more attention than the non-disabled one. The only time I get that intense attention that my sister receives is when I get the flu or some other illness. Yes, it's horrible to be sick, but wonderful when one's parents treat you with the same worry and concern as they would with their handicapped child.
I disagree with teaching a disabled child that they are special. I believe they should be treated as if they are "normal," whatever that is. It has led to problems with both of us as adults. She has a hard time when she's not treated special and when she isn't in charge of whatever is going on. She was spoiled as a child because people felt sorry for her. She dominates conversations, holiday planning, etc.
And I don't appreciate when people treat her nicer than me. I drive her around, lift her wheelchair, physically help to get her from point A to point B and then people are overjoyed that the "poor handicapped girl" was able to make it to a function, completely ignoring me. Especially since I was the one who schlepped her there.
Here's the problem, I'm the sibling. I don't see her as disabled. This is the only way I've known her. It would be odd not to see her in a wheelchair. The only way I feel comfortable talking to her is while I stand behind her, pushing her chair. She is normal to me. But to anyone else, they see a handicapped person. Hard to miss since she has a wheelchair and is very disabled. But that isn't the measure of a man. It's what's in your heart, in your soul that makes you a good person. A person worthy of praise. Being handicapped doesn't mean you are better than anyone else. You need more help and more time to learn to do things. And there may be things you'll never learn to do. And that's sad, but it is what it is. You can go on and reach your abilities and live a responsible life.
There are good and bad handicapped people as there are good and bad Jews. Just as there are good and bad siblings of handicapped people. Treat handicapped people like they are normal. Give them help when they need it but for G_d's sake, don't tell them they are special. It's the worst thing you can do for them and it's hurtful for their siblings. The best thing you can do is treat them and talk to them as you would any of the other students.
I love watching my sister with her childhood friends. They talk to her as an equal. They don't help her unless she asks for help. And they and I know her abilities so we know what she will need help doing. Then there are people she has met as an adult. They try to take care of her, when it's much healthier for her to allow her to help herself.
In a nutshell, I can tell you as a sister of a severely handicapped person, don't treat the handicapped person as if they are more worthy of attention than the non-handicapped sister. So, it seems, the problem is not how to treat the non-handicapped sibling, it's the way people treat the handicapped sibling. Yes, it's hard not to give too much attention to an adorable kid in a wheelchair, but as I said, it's not healthy for them. Think of their future, when they are adults and aren't adorable anymore and can't/shouldn't be the center of attention at all times.
I'm sorry if this sounds harsh, but I'm telling this from personal experience.