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No Longer Wishing to Be Labeled “With Disabilities” Self-Advocacy Participants Declare Themselves to Be “Individuals with Difficulties”

June 2017


     With the support of the National Self-Advocacy Project – a joint program of Israel Elwyn and Beit Issie Shapiro created in partnership with the Ruderman Family Foundation and the Jewish Federation of Greater Los Angeles – Israelis with “developmental difficulties” are finding their own voice.  No longer content to have others speak on their behalf, Self-Advocacy Project participants are preparing to discuss their needs and advocate on their own behalf.  Their goal, they say, is to live with pride and dignity, assuming the right possessed by all Israelis to define themselves and determine how they are represented to the broader community. 

An early expression of this new empowerment is the rejection by many Project participants of the “disability” label and their declaration that they are simply “individuals with difficulties”.  As their leadership explains, the language of “disability” focuses society on their inabilities; speaking of “difficulties” allows society to see both the challenges and the successes that they can and have achieved. 

This and other topics were the subjects of discussion when 120 self-advocates who are affiliated with the National Self-Advocacy Project gathered at the project’s 5th Annual Conference on April 25th in Jerulsalem.

The themes addressed at the conference were chosen by the groups' members and reflect the concerns shared by all adults: how to have fun and how to succeed in a coupled relationship.  In plenary presentation and small group discussion, participants considered their right to choose and participate in recreational activities, the right of a couple with difficulties to live on their own and to marry, and the obstacles placed in the way of exercising those rights.  

Throughout, participants were challenged to determine for themselves the direction that their lives are to take.   Small groups discussed the advantages and disadvantages of choosing to be part of a couple; the decision to find a personal mentor and guide to whom one may go for advice; and the degree to which participants choose to spend their recreation time in the general community. 

No single opinion dominated.   Most participants agreed that they would like to be in a romantic relationship.  As Yael said, "I want a relationship, someone to share both joy and sorrow, and to go have fun together.  When I have a problem I go to a friend, a counselor or my parents."  Shay summed it up for many: "I want this type of relationship, a partner for life with whom I could create a family and marry.  Everyone should have a partner.  If I were to have problems I would consult with my parents or best friend, but I don't think there would be problems:  I am an adult." 

In talking about how they have fun, participants were very much like their contemporaries elsewhere, enjoying music, videos, and travel.   Most talked about their desire to choose their recreational activities for themselves and their concern about having those choices made for them.  Ortal spoke for many when she explained that “At first, I chose not go to scheduled, large group activities.  But I started after my brother passed away to distract myself.  Soon, I found that I enjoyed them and that I could choose the ones I wanted to go to”.

At the end of the day, conference organizers and participants declared the conference a success.  It served its purpose:  to enable people with difficulties to join together and express themselves in all areas of life, in a setting which they themselves planned and implemented.   A position paper based on the conference and advocating action steps which will further advance the self-advocacy goal is being prepared for Project leaders to present to policy makers and members of the Knesset.  

Link to Hebrew article in Israeli daily newspaper Haaretz:

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