Thursday, June 14, 2018

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.

8 comments:

  1. I did do a pause when I read "access limited." "Is this the new preferred term?" I thought to myself. Thanks for educating me and for your continued advocacy.

    ReplyDelete
  2. Neil, all I can say is "Yes." But I also want to share this delicious piece from the BBC, "Getting Personal With the Artist Who Was Ahead of her Time" on Frida Kahlo:

    https://www.bbc.com/news/entertainment-arts-44466102#

    "She was ahead of her time. The reason she's so contemporary now is that she was contemporary then," says co-curator Circe Henestrosa.
    Kahlo resonates for many reasons in the modern world, she says. "It has to do with what she represents today. Whether you're a woman, whether you're disabled, suffering from some illness, suffering from a romantic break-up - it connects on so many levels.
    "She was a Mexican woman, with dark skin, who was disabled and looking for a place as a female artist in a male-dominated environment in Mexico, in the world of art.
    "Aren't these the same things we're fighting for as women today, to have a voice?"

    ReplyDelete
  3. We do have potential . We are people with disabilities ,accent on or peopleness first. We are also limited economically, socio-structurally, and culturally and environmentally because of how this society and others in the world have developed historically . The society will allow more access to us as attitudes and resources allow. Some of us have more access than others.But limits to access are barriers that are constructed by the way we as a society think and build structures. Access is both a reality and a social construction We can have more access but all the same we are limited
    I don't believe the synagogue of all places a reform or even a conservative one in this day and age let alone any more liberal ones that I identify with would consciously want to imply we are less than other human beings

    ReplyDelete
  4. In other words, they would want to be inclusive proactively I would think

    ReplyDelete
  5. We do have potential . We are people with disabilities ,accent on or peopleness first. We are also limited economically, socio-structurally, and culturally and environmentally because of how this society and others in the world have developed historically . The society will allow more access to us as attitudes and resources allow. Some of us have more access than others.But limits to access are barriers that are constructed by the way we as a society think and build structures. Access is both a reality and a social construction We can have more access but all the same we are limited
    I don't believe the synagogue of all places a reform or even a conservative one in this day and age let alone any more liberal ones that I identify with would consciously want to imply we are less than other human beings

    ReplyDelete
  6. A thoughtful piece. It made me think.
    I have been writing a piece about a wonderful doctor who enabled disabled people to live the lives they wanted through standing up to bureaucracy, and if Services could not get it right, she would do it herself.
    She made it her business to be well informed, and was shocked at the conspiracy which seems to pervade the whole system of "It doesn't matter. They're disabled."
    She championed those who were access limited, as you would say, and single handedly tackled access to housing, transport, and yes,a meaningful life. These were severely disabled patients, most of whom required to be ventilated.
    I understand the term being troublesome,, but in some respects it does say it. I have had epilepsy all my life, and have had to barge my way through numerous barriers, which would not have existed for "ordinary people". It has definitely felt like an access limited life to me.
    But as you say,awareness and education are vital. It is also of paramount importance to find a credible disabled leader, or a professional who will champion the cause.
    As a disabled lawyer friend used to say:
    "It is more difficult to teach people about disability than it is teach a prawn to whistle."
    Keep going.
    We will get there.
    Linda

    ReplyDelete
  7. “Access-limited,” humm, a new one. I think it was meant as a euphemism for people who experience disability access limitations, exactly as Denise described. However, I think the error is worse than many euphemisms as it is dehumanizing as well. “Access” is a phenomenon that exists between a person or people and a context or phenomenon. It may include the social or ideational as well as the physical. All people experience limitations in access, not only disabled people. Economics is perhaps the worst limitation when access to food and clean water is involved. Compared to this my problems in communication access as a disabled person with a speech impairment at my congregation, Beth EL in Eureka where my sister is the Rabbi, pales. If you collapse all access limitations into disability access, even euphemistically, you open yourself to a larger critique of ignoring other human rights problems.



    My next question is who, or what is “access limited” and why? Usually we say “access to” something is limited. The limitation is NOT inherently part of the person without access, nor even that to be accessed. It is a mismatch. No one is disabled for being the 101st to arrive for an airplane that holds 100, they just can't get on. When disabled people experience an access problem, usually being first would not have helped except to have time to suggest solutions or protest.

    Abstract or real access limitations, even including the non-physical ones, are NOT the only or even the defining factor of the disability experience. Euphemisms, by definition, are reductive. We are so much more than the opportunities from which we are excluded. There will always be something shameful about “disability” if people feel the need to reduce it to a euphemism. In other words, using disability euphemisms creates disability oppression. In today‘s progressive Jewish congregations, if you can't bring yourself to use the word disability, get out of the way, pass the task that requires it to someone else, and study the disability justice movement to better educate yourself.

    Devva Kasnitz, PhD
    devva@earthlink.net

    PS: On another note, I never use the word “disability” in the plural, but that’s another topic.....

    ReplyDelete
  8. i find Art communicates this delicate negociation ..better than logic can..

    ReplyDelete