We Are People with Disabilities

We Are People with Disabilities

Recently, an article in our Temple's monthly bulletin referred to people with disabilities as 'access-limited'. My wife, Denise, sent the following to the author early the morning after receiving the bulletin;

“I seem to be having one of my sleepless nights. One of the things disturbing my ability to fall asleep is that I find myself ruminating about the term in the subject line of this email that you used in your temple bulletin article. When I first read it, I couldn't put my finger on why it offended me, but in thinking about it in the wee hours of the morning realize how dismissive the term is in the context of how you used it. Referring to those of us who have disabilities as just 'access limited' only addresses the physicality of our experience; it doesn't acknowledge the exclusion we come up against as we experience the discrimination of being stereotyped, patronized, and ignored by members in our own Temple Sinai community. It doesn't help when leadership employs euphemistic terms to placate others' (or their own) discomfort; it really just allows everyone to keep their head in the sands and promotes "the suffering of being different" for all of us, instead of rejoicing in our diversity and the benefits of reaping what we all bring to the table.”

First, I want to acknowledge the importance of this topic. For anyone to lose a night's sleep, get out of bed and type a whole email should really tell us to pay attention and do something about it.

We are people with disabilities.

All my life, people have tried to come up with euphemisms for this. In recent years, the use of euphemisms has worsened. Some people do this out of fear of 'labeling us'. Some people do this hoping not to offend us. Many people use euphemisms in the hope of being more inclusive. No matter how well intentioned, euphemisms results in more exclusions and more isolation.

It's hard to imagine how identifying someone as 'differently-able' or 'access-limited' or 'challenged' would make that person feel part of a group or that the group would somehow feel more inclined to include that person. Using euphemisms can imply that disabilities are shameful or sinful. Using euphemisms not only reminds us that we are different, it tells us we don't belong anywhere.

There are some people with disabilities who may feel challenged by their disabilities. There are some people with disabilities who are differently able and perhaps even diverse able – though honestly I'm not sure what that means. Most people with disabilities have felt handicapped by their disabilities in various situations. Some people who may choose to closely identify ourselves politically and/or culturally with the disability community may be referred to as a disabled person, Among friends, we might refer to ourselves as crips or gimps (generally impaired). What is true for all of us is that we are people first and we have disabilities.

While this may answer the 'who are we' question, it doesn't address Denise's main issue re how to make Temple Sinai a truly welcoming and inclusive place for all people, including people with disabilities, Education is paramount. She and the Temple's Education Director just completed a wonderful Disability Awareness Course for post Bar/Bat Mitzvah students. The students toured our whole Temple and made a list of ways to make it more accessible for people with disabilities. Along with education, working together is how true camaraderie is achieved. People with disabilities need to be encouraged to actively participate in all aspects of Temple Life. Our Access Committee and Social Action Committee must take on more disability related issues. I'd love to see all our teens and young adults have the opportunity to work or intern, side by side with peers with disabilities, in civil service jobs including personal assistant services.

There's always so much more we can and must do to be the welcoming community we want to be. A critical step is recognizing and acknowledging who we are. For Denise and me, we are people with disabilities.

Becoming More Disabled

Becoming More Disabled

My becoming more disabled at the age of 59 was surprisingly difficult. 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 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 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 people with disabilities all over again.

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 may cause inconvenience for Denise and me, but it was workable. If an attendant was late it might have been aggravating, Now, if an attendant is dela,yed it could be dangerous to my health. I was able to schedule 1 or 2 checks to be sent weekly to my attendants. Needing attendants daily requires a complete payroll be run that includes paying taxes, workers comp, etc. I had to ensure every shift was covered and emergency attendants were available. Managing attendants is 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 do lobbying on the Hill. My attendant had worked for several years with some 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 onboarding 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. 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 and able to depend on others.



Go! Go! Go!

Meaning through Responsibility

Meaning through Responsibility

February, 2018

I'm reading a great book by Rabbi Jonathan Sacks called 'Not in God's Name; Confronting Religion and Violence', In the book, Rabbi Sacks describes how as we gain knowledge exponentially faster and faster, we seem to be losing our sense of meaning. As we understand how things work, we lose our understanding of why things work and why we are here.

This week's Torah portion is Mishpatim. This portion describes many laws that we must obey. These laws include things such as setting slaves free after 7 years to not farming ones land for a year every 7 years. While these laws may not be applicable to us today, I was reminded how important rules and regulations are to giving meaning and importance to our lives. Our Torah instructs us to do 613 mitzvahs in our life time. Tikkun Olam tells us we are here to repair the world and make it better. All of this tells us we are important, our family and friends need us, our community need us and the world needs us. These responsibilities gives meaning to our lives.

February is Jewish Disability Awareness Month. As most of you know, Denise and I are proud to be part of the Disability Community and active members of the Disability Movement since it began in the 1960's. Great Progress has been made. The world, especially in the United States, is much more accessible to people with disabilities. There are great laws protecting our rights. Educating children with disabilities is now guaranteed right. Employment discrimination is unlawful. Millions of dollars are spent annually trying to convince employers to hire people with disabilities. Despite all this, over 70% of people with disabilities are unemployed – the same percentage as when I grew up. Across the United States, 63 percent of students with disabilities graduated from high school in 2014 — a rate of graduation roughly 20 percent lower than the national average. Among jail inmates, 40% of whites and 55% of persons of two or more races reported having at least one disability, 

As I compared the civil rights laws having to do with people with disabilities with the laws in the Torah, I saw one striking difference. Whereas most civil rights laws talk about what society and the government should or should not do for people with disabilities, Torah laws talks about what people should or should not do for God and society. Currently, for example, there are laws that say that if people with disabilities cannot work they can receive support services they need to survive. These paid support services are not available for people with disabilities who work. My attendant services costs over $50,000 annually. Few young adults with disabilities can afford that and thus do not seek employment. What if we had a law saying that all people are expected to work to the greatest extent they can, and get support services they need to do so? Another example might be that current law says that children with disabilities should have an Individualized Education Plan and support services needed to complete the Plan. What if the law said that all children are expected to get the best education they can, and get support services they need to do so?

Next Friday evening, Temple Sinai's Access Committee is sponsoring a panel with Jessica Lehman, Executive Director of San Francisco Senior and Disability Action, Susan Henderson, Executive Director of Disability Rights Education and Defense Fund, and our own Rabbi Ruth Adar. They will be leading a discussion about broadening our social justice narrative to include disability rights. My hope is that in the near future, our social justice narrative may change to set high expectation that all people do their Tikkun Olam in a barrier-free environment with the tools and services they need.

Asking the Real Question

Asking the Real Question

“If I go to work, how much can I earn without losing my Social Security?” This is one of the most frequently asked questions received by disability benefits financial advisors. There are websites, online forums, law firms, and agencies devoted to answering this question.

Recently, as I stared at this question. I realized that this actually was not the real question most people with disabilities wanted to be answered. The real question is, “When I go to work, how will I be able to afford my disability-related expenses?”

Disability-related expenses, also known as long-term medical expenses, include things such as personal assistant services, durable medical equipment, maintenance drugs, and ongoing therapies. These are often the most important that keep people with disabilities alive, active, and engaged in our communities. These are also very expensive! Few people with significant disabilities can afford them even with 'good incomes.' The high cost of these long-term medical expenses is why healthcare insurers shy away from pre-existing conditions.

We have become so ingrained with the idea that Social Security is the gateway to financing disability-related expenses that we too often don't even look for other ways. The Veterans Administration, for example, pays disability-related expenses for veterans. In some states, the Department of Health pays for disability-related expenses for people with developmental disabilities regardless of income or assets. Private healthcare insurers often offer plans that cover disability-related expenses.

Unquestionably, Medicare/Medicaid are the most prominent financiers of disability-related expenses. Undeniably being a Social Security beneficiary is the easiest way to qualify for Medicare/Medicaid. Indeed before recently, I had dedicated my retirement to change the purpose of Social Security from being a wage replacement function to providing an offset to the high cost of disability. Changing the Social Security paradigm is extremely difficult, especially in today's environment. Expanding Medicare/Medicaid to cover long-term medical expenses is much easier to understand and to be accepted by the public and legislators. In a recent blog, Real Healthcare Reform, I explained how this expansion may be paid for and how I hope healthcare insurers may be our biggest advocates.

When we find ourselves asking the same question over and over again without getting an answer we can live with—perhaps we should ask ourselves whether that is the 'real question.' It may open new ways of looking at a problem and new opportunities to its resolution. Please let me know what you think about enabling Medicare/Medicaid to cover long-term medical expenses. How can/should we move forward?

Judaism in the Information Age

Judaism in the

Information Age

I've always identified as a Jew. I'm an active member of Temple Sinai in Oakland, California. I'm on its Board of Trustees. Denise and I attend services somewhat regularly. I've presented at several Union of Reform Judaism (URJ) conferences and at its college in New York.

I'm Jewish primarily for 2 reasons. First is to honor my parents who survived the Holocaust. Second is that I greatly appreciate that it is a religion that values questions more than answers. Judaism has been a moral compass for me. My favorite part of services has always been sermons that brings wisdom of the ages to help understand today's problems. I've always appreciated that Judaism provided a framework to think about why we are alive and what's important about being alive.

The last few years, I've been increasingly disappointed that Judaism, or any religion I know, is not helping us better prepare for tomorrow. Judaism and our mores are not keeping up with the ever-increasing pace that our scientists and technologists are moving.

We are rapidly moving out of the Industrial Age and into the Information Age. In this new age, artificial intelligence, (AI) will enable robots to perform tasks much more effectively and efficiently than humans. Gene manipulation will enable many diseases to be eliminated. We will be able to prolong life, and perhaps eliminate death. We will undoubtedly be able to create life – life that perhaps has thousands of times the intelligence of any humans to date. Scientists predict this could all happen within the next 50 years. Scientists also predict that as these super human beings, aka homo deus, become omnipresent, our species, homo sapiens, will go extinct.

While I have no reason to doubt that super humans will soon be among us, I find it strange to think that we might go extinct. When human beings evolved, plants and animals did not go extinct. More importantly, Judaism and most religions have always proposed that there is a super human known as God, or Higher Power, or Nature, etc. If homo deus have some of the characteristics we attribute to God, how might our relationship to God change? How might prayers change? Would what we pray for change? Do we really want to cure all diseases? Do we really want to live forever? Do we want and can we still have free will? What implications do any of these questions have on the way we live today? Are there regulations and/or conversations we should be having that might better prepare us for tomorrow? Can we affect how we evolve?

These are the types of questions Judaism and other religions should be tackling. Scientific and technological advances are inevitable. They will happen with ever-increasing speed. They need a moral compass guiding them.

Creating Tomorrow

Creating Tomorrow

09/21/2017

Today is Rosh Hashanah, the Jewish New Year. I woke up to find an email from Temple Sinai saying that someone had defaced the synagogue's exterior walls with anti-semantic slurs. The email went on to say that the graffiti has been covered up with paper and urged all of us to write loving thoughts on the paper as we came to services today. At the start of services, our rabbi asked all of us to turn to our neighbors and give them a big hug.

I cried when I read the email. I cried as we drove to Temple and I cried as services began. I cried for my parents, especially my Mom, who survived the Holocaust. My Mom still cries everyday remembering the persecution she and her family and friends suffered because they were Jews. I cried thinking of all the DACA people who are scared today of perhaps being deported. I also cried for the people who defaced our beautiful synagogue. What was it about their lives that made them hate? Why did they want to hurt other people? What do they need that they aren't receiving?

Like most people I know, I am horrified and detest the rhetoric and tweets coming from our President. He has, however, opened our eyes and helped us see how unhappy and hateful so many Americans are. The question now is, what can and will we do about it?

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As I was reading the prayers today, I was thinking that we are not adequately preparing ourselves for the next stage of evolution. Technology is dramatically changing the world. Climate change is happening. The gig economy and globalization is changing the way we work and live. Our laws, politics, morality and spiritually are not evolving as quickly as the world needs them to evolve. We seem so fearful of the future that we are desperately hanging on to the past.

My greatest hope for the new year is that instead of fearing the future and blaming each other for how we got here, we get excited about creating tomorrow. Instead of fretting about how terrible fossil fuel has harmed the environment, lets be excited about solar and get better prepared for global warming. Instead of trying to lower healthcare cost by denying healthcare to people who need it, let's get excited about finding new cures, drugs and protocols faster. Let's consider single payer for long term medical expenses and separating these expenses from healthcare. Instead of trying to reinstate yesterday's jobs by tweaking yesterday's laws, let's prepare ourselves for the era when machines and artificial intelligence will do most jobs better than people can. Let's create tomorrow in such a way as to ensure that everybody has what they need to be safe, cared for and needed. This is how hate will be eradicated.

I started the day crying. I'm ending the day hopeful again.

Go! Go! Go!  

Hoffi

On Wednesday June 28, 2017 one of my very dearest friend, Hoffi, (Stephen Hofmann), whom I've known since I was 4 years old, passed. He has been in Hospice for close to a year. He was quite ill for several years before that. When I answered the phone and heard his daughter's voice I knew he had passed. I was actually expecting to be on a conference call at the very moment. For a second I was confused as to what to do. As soon as I heard the words, “Hoffi passed” tears began flowing. I cried louder than I've cried in many many years. Regardless of how comfortable one may be with death, and regardless of how much one knows that a friend's death is inevitable, hearing the words the a loved on has passed is unbelievably painful.

I met Hoffi when I was in kindergarten along with Michael Ward and Judy Heumann. The 4 of us have remained very close friends. Michael, Hoffi and I have very similar disabilities. We all have significant speech impairments. We walked, CP style, as kids and use powered wheelchairs as adults. We all have been able to do most activities of daily living very independently until recently. At camp we were called 'The Three Sisters'.

Among the many things I've learned from Hoffi, learning to travel the New York Subway System independently was probably the most significant. In the late '60's and early '70's none of the subway stations were wheelchair accessible. Hoffi and I would get ourselves and our manual wheelchairs to a station by propelling the wheelchairs with our feet. At the station, we would park the wheelchair near the staircase, sit ourselves down on the step, and bounce ourselves down or up the stairs. Many people went passed us. Most people gave us very weird looks. Inevitably someone would stop us and ask if we needed assistance. We would point to our wheelchairs and they would go bring the wheelchairs to the platform we were headed to. Quite often, police appeared, telling us that what we were doing was illegal and asking for ids. Occasionally they would call the universities we attended to confirm our student status. What was the most important lesson learned from all this was that there is always a way to get to where you want to go and do what you want to do. It also taught me that if hundreds of people pass you by and only 1 person stops to help, that 1 person is enough to help you succeed.

The greatest gift Hoffi gave to the world is his daughter. Emily, like her Dad, is the kindest, sweetest, fun filled, life-loving person you can imagine. Hoffi lived in the San Francisco / Bay Area where Emily was born and raised. Hoffi left the Bay Area to pursue a PhD at the University of Illinois. When Emily had difficulties, she allowed me to be the 'uncle' I always wanted to be. We shared good times and hard times. I visited her in Idaho and Southern California. Little did I know that in a few more years the table would be reversed and Emily would give me the support I needed. Starting in 2011, my ability to function independently declined rapidly. Hoffi had lost his ability to do most of his activities of daily living independently a few years earlier. Emily was one of my first attendant. She got me up 5 mornings a week for more than a year and often helped me to bed at night. Perhaps more importantly, she helped me remember I was still the same guy I've always been. Emily moved back east when Hoffi entered hospice to be with Hoffi.

Denise and I saw Hoffi for the last time when we were in New York in December, 2016. I was able to have time alone with him. I asked him if he was ready to go. He said 'no'. He said he wanted to see a grandchild. It made me feel good knowing he still had goals to strive for. While this goal was not met, it renews my belief that striving and failing reaching a goal is always better than not having a goal.

At my memorial, instead of having people go on and on as I just did, I hope one person will say “he was a good guy,Go! Go! Go!” Hoffi, you are a great guy. Go! Go! Go!