On Saturday, February 9, 2019, I presented this drash (commentary) at Temple Sinai.
Terumah
This week's Torah portion is Terumah. In Terumah God tells the people how God wants the Temple to be built. God gives very detailed instructions. Some tasks are to be done by everyone, and some are to be done by some people. Everyone had to participate.
February is Jewish Disability Awareness Month. Temple Sinai's Access Committee chose 'Care-giving and Care-receiving' as our theme—a challenge many congregants will need to address at some stage in their lives.
For me, transitioning to becoming more disabled at the age of 59 was surprisingly difficult. As most of you know, I have always had significant disabilities due to Cerebral Palsy. I use a powered wheelchair, My speech is hard to understand. I never sit upright in my chair. I always needed assistance in preparing food and cutting it up. My wife, Denise, has similar disabilities to mine. In the 35 years that we've been married, we've always needed attendants about 10 hours a week for cooking and cleaning. When David, our son, was a baby we hired help to help feed and bathe him.
At age 59, my spine started compressing causing me to lose sensation, strength as well as my ability to function independently. I now need assistance getting in and out of my wheelchair, in the bathroom, dressing, feeding, driving my car, etc. Many of my friends need this kind of assistance. As a disability advocate, I've always been a big proponent for good government-subsidized personal assistant services. Yet I wasn't ready for what real dependence on attendants meant. I couldn't get out of bed, or eat when I wanted to eat or go to the bathroom when I needed to. All of this was shocking to me. I felt that I had to learn how to be a person with disabilities all over again.
This week's Torah portion reminded me that we all need assistance. Even God needed help to build the Temple. Not only is it OK to ask for help, it is also required. The text clearly shows us that while God knew precisely what was needed, it was only through requesting assistance that God's needs could be met. Terumah goes on to show us how each one of us has unique skills. It is only when we all offer to use the skills we have to build a better world that true progress can be made.
Again, for me, needing personal assistant services for all my activities of daily living also meant higher expenses and much more management. Before, if an attendant needed time off, it might cause inconvenience for Denise and me, but it was workable. If an attendant was late it might have been irritating, but we managed. Now, if an attendant is delayed, it could be dangerous to my health. Before, I was able to schedule 1 or 2 checks to be sent weekly to my attendants. Now, needing attendants daily requires a complete payroll be run that includes paying taxes, workers comp, etc. I have to ensure every shift is covered and that emergency attendants are available. Managing attendants became a job in itself.
In July 2015, one of my attendants and I went to Washington DC to attend the National Council on Independent Living's conference and to lobby on the Hill. My attendant had worked for several years with many people with disabilities. She asked me why my attendants weren't paid through the Regional Center of the East Bay (RCEB). I knew of the RCEB, and I knew they paid for Supportive Living Services, including personal assistant services for people with developmental disabilities. I also knew that Cerebral Palsy is a developmental disability. It never dawned on me that there are no income or asset limits associated with these services. The application process took about nine months. After I became a client, Denise applied. We now receive personal assistant services 12 to 15 hours a day.
To receive personal assistant services from the Regional Centers, attendants must be employees of an authorized agency. We use Inclusive Community Resources (ICR) which is run and operated by a woman who has Cerebral Palsy. Denise and I still find and vet our attendants. I go with them to ICR to help with the ICR registration process, and I submit their time sheets.
Becoming more disabled showed me that while Social Security is essential, the more critical need is for proper affordable long-term medical expenses including personal assistant services, durable medical equipment, long-term therapies, and maintenance drugs. And becoming more disabled has reminded me of how wonderful people are. My attendants have shown me how even the most intimate personal care can be given with dignity and respect. To be truly independent, we have to know when and how to be able to depend on others.
Please join us at the Shabbat Mizmor Shir evening service on Friday, February 15th when Helen Smiler presents a provocative introduction to the subject of giving and receiving personal assistance. This will be followed by a panel moderated by Rabbi Ruth Adar at the Oneg, featuring Sara Klein, Luciana Perez, and Denise Sherer Jacobson sharing their personal experiences. Also, please tell your family and friends that on Sunday, February 24th at 10 am, the Access Committee will host a Conversation at Temple Sinai for the community to continue this very significant and purposeful discussion.
It is my sincere hope that going forward, we all know what we need and can ask for and receive whatever we require.
Shabbat Shalom and Go! Go! Go!
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