No Decision About Me, Without Me

Photo by John Rifkin; courtesy of Kisharon.
JCC Global Special Needs Seminar visits Kisharon. Photo by John Rifkin; courtesy of Kisharon.

By Smadar Bar-Akiva

“No decision about me, without me” – this core statement presented by Janet Leech, the Head of Learning Disabilities at Enfield Council in London at the conclusion of JCC Global’s Amitim Fellows Special Needs Seminar captures the essence of a groundbreaking experience. Executive directors, senior staff members and volunteers from the Mazal Tov JCC in Zaporizhzhia (Ukraine), the Shore Front Y in New York and the Eilat Community Centers in Israel gathered in London to learn about the services and programs provided for individuals with special needs as part of their effort to make their own JCCs and JCCs around the world more inclusive. Janet and the many other individuals that they met brought home a more comprehensive approach to inclusion, a real effort to listen to the people who receive service and ways of realizing the great potential of people with disabilities.

It all started a year ago when the leaders of 25 JCCs from 11 countries gathered in Budapest to launch the JCC Global Amitim Fellows Global Leadership Network. In a brain storming session, when they had to choose partners and projects for future collaboration, Sue Fox, the Executive Director of the Shorefront YM-YWHA JCC, came up with a suggestion for a project. She called it: “Expanding our Beautiful Jewish Community.” This was a captivating idea for both Eilat and Zaporizhzhia and the global group was formed.

As part of their initial mutual learning process, they found out that the way individuals with special needs are served in their communities is very different. Due to their particular culture, economy, politics and judicial system, the menu and focus of service varies. But they did find common ground. They were all looking to better train and manage the work of volunteers who work with individuals with special needs.

From the start, the group was fortunate to have Neil Taylor, Director of Community Services for Jewish Care – London’s largest health and social care organization, as a mentor. Neil has been a board member of JCC Global for many years and served as a distinguished mentor to JCCs in Ukraine. Neil suggested the group come to London and study the London model on “neutral grounds.” Another collaborator was Mariano Schlimovich, the Director of the ECJC and EAJCC, who agreed to implement and facilitate the seminar – turning the twelve participants into a close knit community.

The group visited several institutions and met directors, lay leaders and staff members of Jewish Care, Norwood, Kisharon and Enfield Council. Each evening, the group spent several hours reflecting on the visits and trying to integrate these experiences into their project planning process. It was their opportunity to engage the professionals and volunteers from the three communities in a face to face encounter. “The visits served as a platform of discovery and an opportunity to focus conversations and delve deeper into the areas of connection between their communities. It was an opportunity to learn how the community in Zaporizhzhia deals with the current war and on top of that continues to serve the special needs community in a community with very sparse resources and without any support from local or national government” reflected Sue Fox.

At the concluding session, Suzanna Levitt from New York said she was blown away by the programs that they visited. She was impressed by the enthusiasm and joy of the people who work in these institutions and was bringing back to her community this sense of purpose. For Frida Ben Yosef it was her first opportunity to participate in a professional development seminar outside of Israel. As the professional overseeing social welfare for the city of Eilat and as an active board member of the Community Centers of Eilat, the impact of combining the study of special needs – theory and practices – with the discussions on Jewish Peoplehood and Jewish identity was very powerful.

For the participants from Ukraine the study experience in London could not be separated from the war that is raging there and the enormous challenge to continue functioning amid crisis and uncertainty. Inessa Nossenko, the Executive Director of the Mazal Tov JCC in Zaporizhzhia said that it was very important for her and her colleagues to attend this seminar as they felt that they were not alone. They felt that they were part of a big Jewish people. “In our special situation in Ukraine,” Inessa said “life is not easy. I take from all of you the experiences that we shared and I’m going to bring it back to my community. You all gave me an opportunity to learn useful things that will help the future of my community. The future is in our hands. We will make things happen.”

The visits were so impactful that the group decided to enlarge the scope of their work. They decided to find ways to engage more volunteers with greater skills to serve more people with special needs. Iris Cohen, the Executive Director of the Eilat Community Centers is going to take it a step further and initiate a city wide project that will heavily involve the local municipality and local institutions. The group foresees building models of best practices that are replicable and will eventually be shared and adapted by additional JCCs. JCC Global, who initiated the project and is supervising it, is going to provide the group members an opportunity to showcase their achievements at the upcoming 9th World Conference of JCCs, this coming November in Jerusalem.

Watching the process of study, debate, disagreement and reconciliation among the three communities, one could conclude that the principal of “No decision about me, without me” is not only applicable to serving individuals with special needs but is also an excellent guideline for building and sustaining global partnerships.

Funding for this program was provided by JCC Global and UJA Federation of New York. Additional program support comes from JDC and participating JCCs.

Smadar Bar-Akiva is the Executive Director of JCC Global. She can be reached at: Smadar@jccglobal.org.