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By: Ortal Toledo, Aviya Beiderman, Adiv Abu-Amar, Yanna Mavshev, Tzachi Cohen, Ayelet Cohen, Yosef Prokovitz and Facilitator: Ilana Shilat Kohlender
Edited and Translated by David B. Marcu
Editor’s Note: For individuals with intellectual disability, the process of self-advocacy begins like any other type of inclusion – with accessibility. For people with intellectual disabilities to advocate for themselves, they need the information necessary to make meaningful decisions to be made “cognitively” accessible. In Israel Elwyn and Beit Issie Shapiro’s national Self-Advocacy Initiative in Israel (in partnership with the Ruderman Family Foundation and the Jewish Federation of Greater Los Angeles) this is a constant goal – making information understandable and accessible. While self-advocacy group leaders are individuals with intellectual disabilities who have been specially trained to serve as leaders, no less important, a “facilitator” has been specially trained to support each group and make information understandable to facilitate decision making – by the group and only by the group.
For self-advocates with intellectual disabilities, making information cognitively accessible is only the beginning; they must learn to believe in themselves and to express their opinions, needs and desires. But society, too, must make significant efforts to really listen. For those who previously had little or no voice, many have found that voice.
Let’s “listen” to the words of some determined and dedicated self-advocates who are members of a group that meets in Beer Sheva, Israel, by reading what they wanted us to hear:
We are members of a self-advocacy group in the South of Israel, which has been meeting for nearly five years. Most of us completed our National Service (National Service is a form of alternative community service which many Israelis perform in lieu of military service) and other than one of our members, we all live with our parents.
The members of our group decided what should be the behavior rules for the group. We have 14 rules. At the beginning of each meeting, we read out these rules. Here are some examples: 1) Group members must respect each other. 2) During meetings, we don’t speak out of turn and don’t use our cell phones. Cell phones are to be kept in quiet mode in their pouch. 3) Members only speak if called on by our leader and don’t interrupt each other. 4) Members are to arrive at meetings on time and don’t leave in the middle of a meeting. 5) The members agree to keep secret whatever is said at the meeting.
Here are some examples of what has been done and decided on by our group recently:
Two months ago, our group met with the Mayor of Beer Sheva, Mr. Rubik Danilovich and with the City Council member in charge of social services, Dr. Hefzi Zohar. Afterward, we met with Ms. Miri Ben-Zikri, the Director of the Department of Rehabilitation of the City of Beer Sheva Social Services Department. The discussion with Ms. Ben-Zikri was very good. We introduced ourselves since it is important to us that the people in the City Department of Social Services know about us. We spoke to her about things that concern us, such as working in the open job market, educational opportunities for people with intellectual disabilities and we asked for help in recruiting more members to our group.
Ms. Ben-Zikri listened to us and promised to tell all of the department’s social workers about our group. She indeed did this. Also, she gave us a few ideas about jobs and educational opportunities. We left the meeting with a good feeling.
Another activity that we are planning, now, we thought of because one of our members volunteers at a local kindergarten. Since the community has been demanding that more aides be added to kindergartens, we decided to act to have people with intellectual disabilities get paying jobs as aides. Our first step will be to learn more about this topic, after which we will decide on action steps.
Members of our group also participate in the national study group on the topic of changing Israeli’s Guardianship Law, and are planning activities to improve the proposed new law.
These words come directly from group members who are determined to make a difference in their lives, in their community and in their country. A few years ago these voices would not have been expressed. But more important, we must all actively make efforts to listen and internalize their message. “Nothing about us without us” remains a still small voice but will get louder and louder when we all make every effort to truly listen. Only then shall we be able to say that our communities are truly becoming inclusive.