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Create DateJanuary 24, 2019
Last UpdatedJanuary 24, 2019

When Rachel contacted Bizchut, the Israel Center for Human Rights of People with Disabilities, she was in the hospital in the final stages of terminal cancer. At seventy years old, she had no family, her condition was deteriorating, she had begun to use a wheelchair, and she was in a great deal of pain. In the past, she had been diagnosed with paranoid schizophrenia. Her doctors refused to release her from the hospital without the appointment of a guardian. Rachel had no guardian and she did not want one. Rachel was an intelligent and realistic woman who knew that if she had a guardian, she would not be allowed to make her own decisions. A stranger would be appointed as her guardian, and this stranger would be authorized to make all decisions about her life, including what treatment she would receive or refuse,when and if she could leave the hospital, and where she would live out her final days. She also knew that the guardian would have access to her medical information and communicate with her doctors and other third parties about her, without having to ask her for her preferences or opinion. When Rachel contacted Bizchut for legal assistance, all she asked for was help in avoiding the appointment of a guardian. Even as her death approached, Rachel was focused on one issue: how to prevent the appointment of a guardian so that she could remain legally entitled to make her own decisions during her last few months of life. Bizchut accepted Rachel’s case and went to court on her behalf. In an unusual decision, the family court ruled against the physician and the welfare officials by outright refusing to appoint a guardian for Rachel. As a result of the court’s decision, Rachel was released from the hospital. Her release came on the eve of Passover, the Jewish holiday marking the end of slavery of the Jews in Egypt. Upon her release, she noted the date and proclaimed: “This year, I too am freed.” Eighteen months later, Rachel died. But until her death, Rachel retained control over her life and was able to make every decision about her treatment and the quality of her life in her final days. Rachel is not alone. Thousands of people in Israel and throughout the world risk losing their right to make decisions about their own lives as a result of guardianship laws.

Kanter & Tolub, The Fight for Personhood, Legal Capacity, and Equal Recognition Under Law for People with Disabilities in Israel and Beyond.pdfDownload 

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