Thank God, we have come a long way from the day when children with disabilities were institutionalized, hidden and talked about in hushed tones. There were even those who feared that a family member with a disability would affect the marriage prospects of her siblings. Thanks to parents like the roomful mentioned in the post below, children with disabilities have, as they say, “a place at the table.”
The journey towards the full integration of Jews with disabilities into their community has just begun. Following are suggestions for additional steps:
-1. We with disabilities are a legally recognized and protected minority like blacks, women and nonbinary individuals.
-2. Unlike the minorities mentioned above, families, educators, clergy, health professionals and the media have hijacked our identity, applying terms to us like “special needs” and “neurodiverse” without ever asking us “How would YOU like to be identified.”
-3. Many terms assigned to us implicitly or explicitly carry with them labels that stick to us for life. “Special” implies that we need not follow rules like others, and that our needs are different from typical individuals. My experience is that individuals so labeled never learn the skills needed to emerge into adulthood as jobholders and as giving individuals ready to seek marriage partners. Such skills include following rules, decision-making, the dignity of realistic risk-taking and living with the outcomes, the understanding that if you act out there will be consequences, the ability to understand and accept criticism and the realization that “you” are not and should not always be the center of attention.
-4. Society in general and service-oriented subgroups in particular have lower expectations when it comes to those of us with disabilities. Luckily, my heroic parents expected from me what they expected from my non-disabled siblings. They disciplined and praised me as appropriate, and had the guts to let me make mistakes, some of which I still regret. To this day, most of the family and friends with whom I associate not only have high expectations of me but also remind me when I am not living up to my potential.
-5. It is doubtful that the author and others mentioned in this article are familiar with and apply the person-centered approach developed and implemented by the independent living movement. This approach, which underlies the Americans with Disabilities Act, stresses that “disability” is not “the problem.” Rather, the focus is on the architectural, transportation, communications and attitudinal barriers which keep Jews and others from more fully integrating into typical schools, camps, houses of worship AND EMPLOYMENT SETTINGS.
-6. Why are there so many terms that avoid the word “disability?” Perhaps because in our society, “disability” carries with it stigma. Since the ADA, there is and continues to be disability pride.
-7. I am not judging anybody about the “feel good” and “inspirational” ethos that underlies many posts about the disabled. I would only comment that it diverts attention from medical, technological, and conceptual breakthroughs that change what it means to be disabled. Adaptive devices enable those who are nonverbal to more fully express themselves directly, eliminating the need for caregivers to pick up subtle signals. The concept of “assumed competence” puts forward the idea that the problem is not that Jimmy can’t learn, but rather that Jimmy’s teacher is not presenting the material to be learned in a way that Jimmy comprehends it.
-8. “the wise person is the one who learns from everyone.” “Everyone” must include those of us with disabilities who are self-directing decision-making adults with disabilities who (often thanks to forward-looking parents and educators) defied societal expectations and became earners, worshippers and heads of families in typical settings. Turn to us as a resource.
Rabbi Michael Levy shares the following response:
Thank God, we have come a long way from the day when children with disabilities were institutionalized, hidden and talked about in hushed tones. There were even those who feared that a family member with a disability would affect the marriage prospects of her siblings. Thanks to parents like the roomful mentioned in the post below, children with disabilities have, as they say, “a place at the table.”
The journey towards the full integration of Jews with disabilities into their community has just begun. Following are suggestions for additional steps:
-1. We with disabilities are a legally recognized and protected minority like blacks, women and nonbinary individuals.
-2. Unlike the minorities mentioned above, families, educators, clergy, health professionals and the media have hijacked our identity, applying terms to us like “special needs” and “neurodiverse” without ever asking us “How would YOU like to be identified.”
-3. Many terms assigned to us implicitly or explicitly carry with them labels that stick to us for life. “Special” implies that we need not follow rules like others, and that our needs are different from typical individuals. My experience is that individuals so labeled never learn the skills needed to emerge into adulthood as jobholders and as giving individuals ready to seek marriage partners. Such skills include following rules, decision-making, the dignity of realistic risk-taking and living with the outcomes, the understanding that if you act out there will be consequences, the ability to understand and accept criticism and the realization that “you” are not and should not always be the center of attention.
-4. Society in general and service-oriented subgroups in particular have lower expectations when it comes to those of us with disabilities. Luckily, my heroic parents expected from me what they expected from my non-disabled siblings. They disciplined and praised me as appropriate, and had the guts to let me make mistakes, some of which I still regret. To this day, most of the family and friends with whom I associate not only have high expectations of me but also remind me when I am not living up to my potential.
-5. It is doubtful that the author and others mentioned in this article are familiar with and apply the person-centered approach developed and implemented by the independent living movement. This approach, which underlies the Americans with Disabilities Act, stresses that “disability” is not “the problem.” Rather, the focus is on the architectural, transportation, communications and attitudinal barriers which keep Jews and others from more fully integrating into typical schools, camps, houses of worship AND EMPLOYMENT SETTINGS.
-6. Why are there so many terms that avoid the word “disability?” Perhaps because in our society, “disability” carries with it stigma. Since the ADA, there is and continues to be disability pride.
-7. I am not judging anybody about the “feel good” and “inspirational” ethos that underlies many posts about the disabled. I would only comment that it diverts attention from medical, technological, and conceptual breakthroughs that change what it means to be disabled. Adaptive devices enable those who are nonverbal to more fully express themselves directly, eliminating the need for caregivers to pick up subtle signals. The concept of “assumed competence” puts forward the idea that the problem is not that Jimmy can’t learn, but rather that Jimmy’s teacher is not presenting the material to be learned in a way that Jimmy comprehends it.
-8. “the wise person is the one who learns from everyone.” “Everyone” must include those of us with disabilities who are self-directing decision-making adults with disabilities who (often thanks to forward-looking parents and educators) defied societal expectations and became earners, worshippers and heads of families in typical settings. Turn to us as a resource.
Rabbi Michael Levy
President, Yad Hachazakah
The Jewish Disability Empowerment Center
www.yadempowers.org