Inclusion: It Also Means There’s Lots Of Ways To Do It

From the New York Jewish Week’s blog, The New Normal: Blogging Disability, April 29, 2013. 

Okay, I know I can be a bit defensive, bristly almost, when it comes to talking about almost anything that I care about. I own that. When it comes to disability and inclusion, I can go a little overboard, but someone’s got to do the dirty work, right?

We were at a meeting: me, my Shutaf team members and with a respected colleague whose expertise is including children with disabilities in educational settings. In a discussion of how to create a program of outreach, education and inclusion for Jerusalem teens, with and without disabilities, she corrected our organization’s definition of what we call inclusion, explaining that facilitating the entry point of people with disabilities into the community of the typical, that is, us, those without a disability, is the only way to describe the term.

I was shocked and upset at having Shutaf’s “reverse-inclusion” model questioned. Okay, maybe a bit defensive too, as my team members pointed out after the meeting. At Shutaf Inclusion Programs in Jerusalem, we serve children and teens with special needs – a broad range of issues are included together – along with their peers who don’t have special needs at a ratio of 3:1. Meaning, those with disabilities outnumber their peers without disabilities, an admittedly unorthodox model. Our aim is to offer the best possible program for both populations, regardless of their differences.

So, when I hear that there’s only one way to include or only one way to define how we include, I get offended. It makes me realize how far we have to go in order to relax, stop defining and just start including. I’m always reminded what Professor Arie Rimmerman, an international figure in the field from the University of Haifa, noted when he visited our summer program last year. He said, forget about definitions and models and ratios, explaining “inclusion means everyone finding their place.” And that means all of us, with all of our issues and frailties, successes and failures, belief systems and cultural backgrounds. I like that, don’t you?

Recently, I wrote about expanding the terms used to describe people with disabilities, or better yet, our acceptance of a greater variety of terms used to for people with disabilities — special needs, cognitively disabled, or, whatever the moniker of the moment is — along with the services that the community offers.

Inclusion has to be a two-way street, an eight-lane highway, and not a four-way stop sign. People with disabilities have limited access to everything: schools, after school, camps, employment, living in the community and beyond. I’m not kidding, here. They really do. “He’s just not independent enough for this program,” I remember being told some years ago about my son. This without even meeting him.  Or, my other favorite line “is he high-functioning or low-functioning?” Funny, you should talk about him with his teacher of the past two years, his best critic but his biggest fan.

Again, it always seems to come down to semantics, as opposed to really making the world a welcoming place for all. Now, in truth, this colleague and I are on the same page, and as we continued our conversation we worked through the chaff, ultimately finding a meeting point that will allow us to reach more teens — with and without disabilities — giving them a chance to see themselves as young leaders, as movers and shakers in the fight for equality for all.

I’m raising the banner for inclusion in the broadest sense. Both my colleagues in the disability community and the rest of the world needs to see my flag, and yours.  Join me and be visible, verbal and upfront about why inclusion matters to you.

Let’s Not Make People Afraid To Open Their Mouths

From the New York Jewish Week’s blog, The New Normal: Blogging Disability, April 11, 2013.

Special needs. Developmental delay. Cognitive disabilities. Disabled. Learning disabilities. Retarded. Autistic. Mentally challenged. Slow. Special. Blessed. Pure of soul.

Language is power. From the first words we form as toddlers, making our needs and wants known, to the daily information we share online, from 140 characters on Twitter and beyond, language has meaning and weight. The better we can say it, the stronger our positions, our beliefs and our passions, whatever they are.

Language can also constrict, preventing the honest sharing of our thoughts, especially if we fear putting our collective feet in our mouths. In these politically-correct times, language has become increasingly dangerous, as descriptive terms and labels change at a pace that many find hard to keep up with, let alone understand and accept. Heeding the dictates of the language police is not only recommended, it’s required, or you’ll suffer the ignominy of using the wrong term.

A colleague who’s involved in the development of camp programs for children and teens with disabilities in the United States had an uncomfortable moment recently when she used the wrong term in a discussion about people with disabilities. After being chastised by a fellow advocate, she commented to me, “I want to use the right language, of course, but I don’t want to feel like I can’t speak for fear that I’ll offend.” Even worse, as a parent of children who do not have disabilities, she already felt tentative when talking about it, wondering if she had the right to express her opinion. Now, she’s just uncomfortable, worried that she’ll do it again, use incorrect language.

I know how she feels. Recently, I was summarily informed by a colleague that there had been a language shift in the field of disability. “Didn’t you know, that it’s people with disabilities now, and not people with special needs?” she told me. I adjusted my speech right away, but was put off the more I thought about it. What word is truly right, and who gets to decide what’s in vogue or not?

Ever since my youngest, who has Down syndrome and autism, was born, I’ve felt the need to be blunt about how I talk the talk of disability, especially when it comes to developmental issues. Take the word retarded. According to my Google dictionary, retarded means “less advanced in mental, physical, or social development than is usual for one’s age.” Okay, check. I also like this use of the word retard, when referring to bread baking as in “to slow down…[as in] a long, cool rest for the dough, during which it develops flavor and gluten.” Interesting. Needs time to develop in all sorts of ways. Checkmate.

Point is, “retarded” isn’t an evil term, it’s a descriptive term. When used pejoratively, of course, it isn’t acceptable, any more than “Mongoloid” was when it was used to describe the somewhat Asian features of kids with Down syndrome, or “Spick” for a person of Latino background. And I’m not arguing that language shouldn’t change along with attitudes towards inclusion and people with disabilities in general. What I am arguing is just this: If we’re looking to break down barriers, let’s not raise new ones by fiddling with the language so much that people are afraid to open their mouths.

When I talked about the new terminology with my Shutaf co-founder and colleague, Miriam, she commented that she preferred special needs to disability. Special needs, she argued, is what it’s about, that is, “the unique issues faced by each person,” as opposed to the perhaps harsher term, disability. She added that special needs also refers to the family as well, dealing as they do with the member of the family who has a specific issue. Or, in the words of my husband, “families of children with special needs, have special needs.” They’re not disabled by disability, but they are rendered special by the experience. It’s got a nice ring, I think.

With that in mind, I hereby suggest that we react more sensitively when we hear a term that we consider questionable when it comes to disability. Consider that the person who used the term may actually feel a connection to that word. Or they may not realize that the language has shifted. Or they might not know that the word is no longer in style, or that using it suggests they are insensitive or ill-informed.

Education and engagement will go a long way towards bringing us all together, while challenging all of us as a community of caring individuals to step up and use our words wisely, just like we encourage a toddler to ask and not point. Language is the point of contact. But tone and the desire to learn is more important than what’s the newest flavor in the disability lexicon. That’s how we’ll create a more inclusive and welcoming society in which well-intentioned people feel at home no matter what language they use.