Speaking ABOUT versus Speaking WITH
Last week, an organization called Shutaf came to discuss their program and do a series of activities. Shutaf is an Israeli nonprofit that organizes after-school activities and summer programs for people with disabilities alongside their typically developing peers. It was started by two women in 2007 who were frustrated by the lack of available and appropriate programs for their children with special needs in Israel. They wanted a place for their children and they wanted to change attitudes towards people with disabilities in Israel. The organization has grown fast, now serving hundreds of children year round. For more information on this fabulous organization visit their website: http://www.campshutaf.org/
The Shutaf representatives ran a variety of sessions on what it might feel like to have a disability, how to better interact with people with disabilities, and specifically how people with disabilities are treated in Israel. Their primary focus is on people with intellectual impairments, but their sessions touched upon all types of disabilities from physical to learning and everything in between.
About an hour into the session, one of the other counselors turns to me, and says “this is awkward, isn’t it?” I responded “what do you mean?” She blinked a few times and said, “you know, because Arielle is here. Doesn’t that make it awkward, that we’re talking about people with disabilities and she’s in the room?”
I wasn’t entirely sure how to answer. I didn’t feel that this was awkward, but obviously she did. I explained to the counselor that it’s important for people with disabilities to be a part of the conversation. First of all, because they know what it’s like. They are the only ones qualified to talk about the experience of being disabled. Secondly, if there’s something you feel uncomfortable saying in front of someone with a disability, you probably shouldn’t say it all. Figure out a way to rephrase it, find a more appropriate environment, or do some independent research.
At the public high school I work at during the year, we want all our students to be at their annual IEP (Individualized Education Plan) meetings. We want them to hear us discussing their strengths, their challenges, and their present levels. We want them to participate in the conversation. We want their advice as we shape their educational experience for the coming year. At first, a few parents were uncomfortable with this. But as we’ve held more meetings, parents have adjusted to having their children in the room.
The same is true for these sessions. Talking about people with disabilities is a great first step. We have been working on this conversation since the 1970s, when people with disabilities weren’t even talked about; they were simply put in asylums and ignored. But we need to move the conversation forward. We need to start including people with disabilities in the conversations. How else will we know what they want and what they need?
During one of the activities with Shutaf, campers we asked to rubber band their fingers together. They were then instructed to either tie their shoes or put their hair in a ponytail. These are both skills that Arielle struggles with due to her limited hand mobility. I pulled her aside and asked how she would like to participate in the activity; she could follow the group and rubber band her fingers together, or she could do the task without the rubber band and discuss her experience. She choose the latter, tying her shoes as she normally does. Afterwards, the Shutaf staff asked the campers about their experience. Arielle explained that she did the activity without the rubber bands but that it was still very challenging. She described how she struggles with tying her shoes daily, how they are never tight enough, and frequently come untied. She laughed a bit as she added a final sentence, “And it’s not like I can take off the rubber bands at the end of the day.”
This is so important for typical people to hear! How many times have you read a paragraph written backwards to show you how people with dyslexia read? How many times have you had your hands tied together and asked to perform an activity? And after the 30 minute activity, you untie your hands and pick up a newspaper to read. It’s important to remember that this is their LIFE. People with disabilities learn how to cope, how to work with, or work around their disability, but it never goes away. Their job is to learn how to work with their disability. The job of the non-disabled community is to listen to their story.