by Rabbi Richard Address~“Nobody truly understands special needs like special needs parents”
A parent of a teen-ager with special needs wrote this sentence. He wrote this as part of a letter addressed to a class I was honored to teach in the Fall of 2013 at our seminary, the Hebrew Union College-Jewish Institute of Religion in New York. The class was entitled “Diverse Learners” and was the first for the seminary; a class that was to explore how future rabbis, educators, cantors and communal service workers could learn about how to include and work with youngsters with special needs. Given the statistics emerging in the contemporary Jewish community, this issue is of primary importance. This parent continued to write: “If I were speaking to your class I would briefly discuss educational issues, but mostly the social issues facing special needs teenagers till age 21.”
Another parent wrote of her experiences and reminded students that the most important things that clergy can do in working with people with special needs “is to be flexible. No two individuals with special needs are the same. In fact, no two people with the same disability are alike.” As this parent went on to explain, her son, who was diagnosed with Asperger’s reminds people that: “if you have met one person with Autism or Asperger’s, you have met one person with Autism or Asperger’s.” She then went on to caution these students to “get to know each one of your congregants with special needs and provide many options. They will clearly demonstrate what does and doesn’t work for them if you ask and observe clearly.”
This class was made up of a high number of students who were themselves parents of special needs children or who had such siblings or relatives. This, the classes and discussions were not merely “academic”, but related in a very primal way to their own life situations. One of the issues that emerged throughout the semester was the use or mis-use of language.
We encountered the ways in which language can be, and is used, to describe families and individuals who are dealing with this issue. One such poignant discussion was published as a blog in 2013. Entitled “Dear People Who Do Not Have A Child With Disabilities”, the blog went through a series of expressions that a parent may encounter in conversation with another parent or individual.
What we are seeing now, especially within the religious communities, is a heightened awareness of and sensitivity to individuals and families who are dealing with special needs concerns. This goes way beyond the ramping of a sanctuary or providing hearing or vision assistance. It goes to the heart of inclusion and culture change. With the extended life spans of baby boomers and our children, we are on the cusp of witnessing another aspect of this issue.
The challenge of how to care for adults with special needs who have been under the care of their parents is a growing concern. As these parents begin to age and need care, the questions will arise as to who and how will these children, now adults, be cared for? This social challenge is not in the far future, rather, it is here now. There are serious ethical, social and economic questions that need to be addressed.
The need for continuing discussion and social awareness can provide needed support and sensitivity. Faith communities can, and in many cases are, doing a major part in bringing such awareness to bear in their communities. If each of us, in our own way, is a reflection of something sacred, then how beneficial will it be for that sense of the sacred and unique to be celebrated. As one colleague wrote in a prayer that was used at an annual service: “As we affirm that God is unique and is one, so we remind ourselves that each human being is unique and that all human beings should be sensitive to the oneness that unites us as children of God”.