When Even The Disability World Disappoints
03/07/2013 - 14:59
Beth Steinberg
Beth Steinberg
Beth Steinberg

I’m an angry mother. I’m also a dedicated mother, and an all-or-nothing mother. Tiger mother? She’s got nothing on me. She’s too busy seeing that her kids become concert violinists, go to Harvard, come up with a cure for cancer and change the world. Pfft - that’s the easy stuff. The road to Carnegie Hall may be paved with hours of tears and practice at her house, but I invite her to join me on the Yellow Brick Road, where each brick is paved with sweat, tears, and wet sheets. Lots of laughter but lots of laundry, too. Me? I’m making sure that my kid is always treated with respect and caring, and kindness, don’t forget kindness, especially when your child requires significant help with simple, everyday activities.

Newsflash. The world doesn’t like disability. The world likes ability and uniformity. Funny how much we relish being the same. Visit any major city these days and note how much the world dresses the same, eats the same junk food and shops in the same chain stores. Walking, talking, going to school, getting a job, doing as you’re told - one nice uniform row of people going in and one nice uniform row of people going out. That’s what we’re asked to do, and what we’re asked to produce when we parent. After all, we can abort those who show themselves already in utero to be of questionable quality and convince ourselves that we’re doing it to prevent them - the unborn fetus - and ourselves, pain and suffering, that it would be too sad or too hard, or too complicated to live our lives otherwise. So why do we raise our eyebrows when we read about hate crimes? Those people were just acting on that basic human impulse buried deep inside us. Blame the world’s woes on someone else and if you can, get rid of them. They’re just dragging us down.

Sounds harsh right? But hey, today, I’m feeling harsh. I’m an angry mom, remember?

It all started with a conversation I had with my son’s afterschool program, which serves about 150 kids and teens with disabilities, many of them significant, everyday, year round.  It’s a great program, run by dedicated, wonderful people, even though I wish it was a bit more inclusive in its methodology. His current group of guys is being closed for logistical reasons. I wasn’t happy to hear of this mid-year change and was upset to hear that instead of offering my son and his buddies a chance to integrate into groups with kids who have better independent living and social skills, they were separating them into two different groups, a sort of motley mix of kids, who don’t seem to fit in with ease anywhere else. 

I asked if we could try him out with a group of older and seemingly more capable boys (most of the groups are separated by sex as the program serves a predominately religious clientele). I was told, as I have always been told, that he would be lost in the shuffle, shunted aside socially because of his limited social and verbal skills. I can believe that. But the next day, I was stunned to find out that more than half his new group has mobility issues - meaning they have problems walking and getting around - and at least two are non-verbal.

A bit of background. I co-founded and run Shutaf Inclusion Programs in Jerusalem. We serve close to 120 children and teens, ages 6-21, with and without special needs, year round at our programs; vacation day camps; after school activities; Young Leadership Program for Teens and parent support groups. Shutaf is a place of complete acceptance and inclusion for all kids of all abilities and from all cultural and religious backgrounds. I told the program’s director that I don’t mind a mix of ability and disability. But where’s the other side, those kids who’d help liven up the group by virtue of their language skills and social sophistication? And really, you couldn’t engage me as parent ahead of time, and explain your educational plan and how you structured this group?

And then, I got it. I remembered that even the world of disability doesn’t always know where to place my guy. That’s what it comes down to, of course, even in the world of disability, fitting into the box.

So please, be sure and try not to have a kid with developmental delay, what no one wants to call mental retardation anymore, or worse, one with a dual diagnosis, or one who doesn’t quite fit the descriptions and labels used today. Those are the hard ones, the ones who need that other box to describe their particular needs, like my son.

My guy has always defied his labels – good for you, boyo - so, when he’s found wanting, I’m ready to go out swinging, brought to tears by people’s inability to understand that he can be included, that he deserves to be included, that it’s his right regardless of whether he can tie his shoes, or function at a level deemed acceptable by others. I hate the whole high and low functioning thing, sorry.

When that happens, I have to pull out my dukes and fight back. Because I know who he is, what he is and why he deserves his place in the world. And I say so, because I’m the angry mom.

Beth Steinberg, is the co-founder and Executive director of Shutaf Inclusion Programs in Jerusalem. Shutaf is a place of complete acceptance for all kids; abilities and disabilities; religious and secular, rich and poor, from all cultural backgrounds. Follow Beth on Twitter, and read the Shutaf blog.

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I'm surprised that you're upset that your son would be put with kids, some of whom function below his level when you want to put him with kids above his level. Why not give him the chance to stand out? Why put him at the bottom? Those kids you shun are worthy people, too.

Good for you!
My husband and I have been pushing for our three sons since they were born. We left Israel for better educational horizons and have found, that once out of school, no one wants to hire them. They're great workers, have great middot and are great young men, 26, 24, 22. Now we are returning to Israel and have a go for the rest of their lives. The daughters will do fine, but the boys need that heavy duty mother who fights all battles.

I feel your pain. The Jewish community is abandoning children outside the conventional box - in direct conflict with our values. It's sad because many of these children will become exceptional adults that our community will have alienated as children. Crazy.

write a book, speak, and help educate a lot more people about the limits of our humanity. as you say, we say it, but do we really mean it? i'm so glad you were published and republished here!

Abilities vary in each of us.....and inclusion is the only way of understanding what it is that each of us can contribute to society. Some of us are endowed with more or less intelligence, beauty, perseverence....but each of us, regardless of the challenges we face, is endowed with humanity.

Thanks Elyane, good comment. Problem is, the world doesn't really buy into that it always seems. Meaning, we say it but do we believe it in our hearts?

Beautifully stated and very well written.

Well done. I've had 18 years of this, the lack of understanding, the deepening sense that it gets worse and worse for a disabled child as you get older and other people regard you as someone who gets in the way, someone who's always looking for help for their disabled child. We are inconvenient. We take up too much time. We do not do one size fits all. I'm so tired of it. My fantastic high flying job is just a distant memory - not that I would do it any other way but that I am somehow so much less welcome because now I'm a mum with a disabled child and that seems to have made me an unperson. A nag. A person who asks for too much to help my poor, vulnerable child who will still have to struggle on long after, with no help.

I hear you. Someone at the NYC Board of Ed said many years to me that what the B of E wants is passive Latino families (whom I'm sure wouldn't want to be thought of that way). The fact that we pushed, always, and pulled and argued and made ourselves difficult made them cringe when they saw us coming. And yet, what should we do? He's our kid and his needs come first, as they should.

This idea that those with disabilities cannot defy their "labels" is old and ignorant. It is a huge issue among the self-advocates here in the USA that they should be seen as people first and their disability second. These self-advocates defy the idea that they should be labeled by their disability. It is a people first movement and its growing.The problem is that the psychiatric community and the social worker community does a great disservice to those with disabilities because they perpetuate the bigotry against the disabled themselves.

While I live in the US not Israel, I have faced these same issues when dealing with the world for my boys. Alot of what you are writing about now I dealt with 15 years ago when trying to integrate my children. Luckily we also have laws that protect my sons here and whenever I invoke them people tend to give way.