I just moved this website, a site that had been largely dormant for two years. In so doing, I had the opportunity to review five years of change (or lack thereof) in inclusion, five years of growth, five years of, unfortunately, frustration.
Nope, the situation regarding inclusion, short of accepting crumbs off the floor, in the Jewish community has not improved. Once I looked below the surface and the situation changed by dint of my child's age, even what I had been told was a boldfaced lie. There are some possible shreds of hope on the horizon as a wealthy foundation, the Ruderman Foundation, has taken on "inclusion" as a cause.
I have however heard those words before. I look at them with a jaundiced eye. Just as the local JCC claims hosting "Special Olympics" to be inclusion and Chabad claims their segregated, pity driven Friendship Circle to be inclusion, I doubt that the temporarily able bodied, wealthy people at the head of that foundation will really include disabled people on the ground as movers. There are too many organizations whose continued existence depends on sidestream programming. There are too many well-meaning "Jewish Community Professionals" who think they know what we need. There are too many "Jewish communities" in which classism, ableism, ageism, pity rule.
As the month of Elul begins, that month in which Jews take stock of our behavior, our Mitzvot, and the times we missed the mark, it's ironic that I am reviewing the situation with regard to inclusion. Is our family more included now than we were five years ago? Nope. It's far less, as the Jewish Community Center has excluded my son from the one program in which he still participated. He's now in a Scout troop in which most of the members had never even met a Jew before his joining, in which he is more welcome than he had been in years at the JCC Troop. It's far less, as even in the synagogue to which we supposedly belong, when I ask to display relevant photos from a journey to Vilnius, I am ignored, not being a sufficient Macher to be permitted to present my work. It's far less, as the resultant anxiety for us all exceeds interest in attending any "community" events, other than a service on my father's yahrzeit, so one family member at least will say Kaddish and honor his memory.
And so it must stay. Perhaps years from now, when it no longer matters to us, the structure of "Jewish communities" might change and include those on the margins. But I am not holding my breath. I'd rather be alive than
As I keep walking this road they call learning about inclusion, what works and what does not, deciding whether it is all worthwhile (mostly, it is), and figuring out how to market the need to include -- as well as how to maintain expectations, from time to time I will comment here. If you have ideas in response, or to share, send me a note firstname.lastname@example.org
and I'll post your musings at the bottom of the page. Working together, we can effect real change and real acceptance!
These images are a retrospective, parts of a larger body of work which debuted at the Sabes Jewish Community Center in St. Louis Park, MN during “Jewish Disability Awareness Month” in February 2011.
At the time, the captions and artist statement were different. I was naïve, believing what others told me; Much of what they said has since proven to be false. I have edited this statement and some captions to more closely comport with our reality in 2014, after an anomalously named “Jewish From Awareness to Inclusion Month” and a challenging “Autism Awareness Month.”
The photo exhibit originated from long experience with an unaccepting, uninclusive faith community, while the rest of society seemed to think that faith communities should be helpful. Instead, any grudging help was provided out of pity, in hopes our family would disappear, with nothing vaguely resembling respect. While developing the exhibit , I looked for others with disabilities to photograph, and found very few. At least one of those I did find has since withdrawn from participation as she also does not find the Jewish “community” to be respectful or inclusive.
I have also found that once my son reached puberty, he was no longer welcome, and actually was traumatized by actions of the so-called “inclusion specialist” at the JCC. The JCC Administration declined to admit fault or help us overcome the trauma, even with professional documentation. In addition, that organization now in lieu of real inclusion, has a host of separate and unequal sidestream programs, calling them “inclusion programming.” These are inclusive only to the extent that non-disabled people would ever participate as other than volunteer “helpers” in things like Special Olympics. The emphasis on such exclusion appears to be based on talking with a subset of non-disabled parents who fear their adult disabled offspring interacting with the real world, and infantilize them, while ignoring comments of disabled adults.
I prefer, by far, “Nothing about us, without us!
Autistic people are as diverse as any people, if they are in a place in which there is equal access to the diagnosis. Autistic people are not a hugely growing group - the diagnosis in the USA is new, so previously, many autistic people simply did not get that label, but a different one.
Autistic people are male, transgender, and female, gay, straight, bisexual, and asexual, a spectrum in function (sometimes within the same person) a spectrum in response to standard tests of "intellect" and exist across the range of living ages.
Autistic people are atheistic, agnostic, Jewish, Christian, Hindu, Buddhist, Scientologist, Wiccan, any form of belief you can think of.
Autistic people are babies, students, teachers, attorneys, doctors, busboys, artists, musicians, dancers, ,actors, retired, retail associates, cleaners, editors, writers, cooks, chefs, small business people, and just about any other activity or employment category you can think of - yes, even parents. This is true despite that the majority of us are employed far below our capabilities.
Autistic people are certain, confused, empathic, and often do not fit well in a society given to playing games.
Autistic people are generally undervalued by a society that looks for sameness, limited kinds of style, groupthink, and "looking good" whatever that means.
Autistic people are often at the mercy of the most recent theory about medicalization, modification, or modification of the cores of our being.
Autistic people are deserving of better than we get, better than the assumptions made about our intellect, capabilities, dangerousness, worth, by media, government, so-called helpers, and the population at large. We deserve, as anyone, to be considered individually on our merits, and above all as valuable and able to contribute to family, community, society.
Autistic people are here to stay.
A response to the request that Autistics blog on this concept
When thinking about this, I kept on coming up with things that the rest of the world should do, to let us live our lives (relatively) unmolested and happily. That made this piece very hard to write. Originally my ideas were:
...be presumed competent
...be permitted to speak
You get the idea.
Mulling this over while driving around on my errands (Oh yes - I drive - have been doing it since about 1977) I came up with a summary that works for me.
Autistic people should....work to be included in society and the world, doing whatever it takes to achieve that end.
I admit, I come at this from a shameless Civil Rights background. I was involved in Disability Rights, long before being correctly labeled, in the 70s. I come at this from a minority viewpoint, as a Jew who has generally declined to operate by "passing" and has been excluded for that. I come at this as a person whose archetype is the kid in "The Emperor's New Clothes, " unafraid to mention that the Emperor is buck naked. That has resulted in exclusion from professions - and an "ignore me at your peril" award, developed especially for me, from a community organization whose opinion matters to me far more.
I have fought long and hard to survive (Yes, I have done so, undrugged, in opposition to the efforts of Psych-Witch-Doctors), and to give my kids (Yes, I have kids - 4 of whom are adults in their own rights and all of whom had some sort of label implying or stating spectrum from childhood) every opportunity to find their passions and meet their potential, whatever that might be. And at times , as now, that has required far more patience than I seem to have been dealt.
I have made mistakes. I am far from perfect. But given some of the ridiculous auto-completions inherent in search engines, I believe I have done pretty well, despite the best efforts of society to render my life null and void. I am that dreaded personage, a financially struggling Aspie With A Mortgage, working to build a living as an Artist.
At the tail end of my sixth decade, the more I think on survival and attaining potential, the more convinced I am that we cannot waste time reinventing a thing to stick onto the end of an axle. As a people (Yes, we are a people, with an evolving culture different from the norm) we must, in the words of one whom some have retroactively claimed to have been one of us, all hang together to avoid hanging separately. We must take stock of our strengths, learn about the opposition (for lack of a clearer term) and use strengths to overcome adversity. We must accommodate our OWN differences, if we wish to see others accommodate our differences from them - leading by example.
People say we perseverate. Maybe this is not such a bad thing. It can keep us focused on our human rights. It can help us persevere despite frustration and roadblocks. It can,in the case of those who have "strong interests" (G-d I hate that term - without the label such a thing is merely an area of expertise) in history, social sciences, law or human rights, provide our movement with sources of expertise . As my esteemed colleague and partner has been known to "joke" there needs to be an outfit, Aspie Research Incorporated: "We look it up so you don't have to !" ANd we can use those skills and desires to the benefit of the community.
People say we lack tact and social skills. I prefer to see that as willingness to speak truth to power. In order to change the world, one must both see it as it is with all its warts, and have a vision of the world as one wishes it to be. This has been true of all movements for human rights, from religious rights of all kinds in all places, nationalist movements, women's suffrage movements, through Native, Asian-Pacific Islander, and African American Rights, and General Disability Rights, through Gay Rights, on up to Arab Spring.
People say we cannot communicate. But action is communication. And action as communication is the frontier. We need to take a leaf from the book of nonviolent protest movements, maybe several. Especially with the stigma of violent stereotypes of spectrum folk blooming throughout main stream media. We can communicate by educating about what is, and is not, inclusion. We can communicate by sharing , however we do that best, our thoughts, our feelings, our accomplishments. We can communicate by "speaking out" (and I use that term in its broadest sense) against injustice, pain, exclusion, stereotyping, profiling, and abuse. What we cannot do is to stay silent, with our voices, keyboards, or bodies, for then it is too easy for those in power to discount our very being and deny us our humanity.
In the few days since I have launched the website and uploaded final drafts, I have been pleased to see the welcoming response to the concept of my books. We also ran headlong into the brick wall of exclusion once again. How many of you readers find it amazing that somehow people with disabilities are almost never included in such concepts as "community of faith", "congregation", and church/synagogue/mosque, unless we are indistinguishable from everyone else? While systematically excluding for whatever "practical" reasons, those in authority or control err on the side of convenience, comfort zone, majority rule.
I invite my readers to get copies of the discussion guide and share the included textual materials in your communities -- then asking , as appropriate, "What would Jesus do?" "What would Moses do?" " What would Mohamed do -- after he was admonished about ignoring the blind man?" Yes, that takes chutzpah (gall, guts or supreme ignorance of the pecking order) but without chutzpah, how can society move forward out of its comfort zone?
While this project, committing a photography exhibit to book format and following its images and words to their perhaps-logical conclusions has been trying to take over my life, that life goes on. We continue to struggle around here with the realities of inclusion (or not). Rafi, who was 11 when this project began and is now 14, celebrated being called to the Torah, at just short of 14. His birthday is on Erev Rosh Hashana, which can be a tricky time to schedule a Simcha (celebration). Being ourselves, we worked with him through the entire "Bar Mitzvah" year, with such educational and identity formation bits as six weeks in Israel on a shoestring, a day camp experience including community service, and a transition back and forth between synagogues, as we found that inclusion is truly a difficult concept for most "normal" people to grasp.
I am reminded of when Rafi was a couple of years younger, and I tried to attend a "new age Chassidic" prayer group once a month. The coordinator of this group, who really does think of himself as a spiritual person, I am sure, asked that we not return as Rafi's noise kept people from being able to enter into meditative states. In the interest of peace at the time, I did not say what first came into my head -- which was:
"And how do you know that the Almighty did not send Rafi as a test, to see if your compassion could overcome your need for order, or to assess your real ability to enter into meditation?"
I have been kicking myself about that ever since.
This exhibit grew from both distant and recent personal history, as many artistic endeavors do. My uncle was diagnosed in the 40s as “Mentally Retarded” though I expect that now he would have been “Autistic”. There was no place for him in the Jewish community. The Archdiocese provided social programs in which he could participate. He converted to Catholicism and was lost to our family and community; I don’t even know if he is alive or dead.
As an adult, after decades of not quite fitting in, I was diagnosed as having Asperger Syndrome. I believe that this neurological set contributes to my vision and to the way in which I put together images to a unique end. For years, I watched my children, all of whom have some learning or other differences from the norm, be excluded from community in a variety of ways, sometimes overt, often not. The four oldest ignore the organized Jewish community as adults (although some are practicing Jews, and one, self-identified as a “militant Hebe,” graduated from the U of M with a Hebrew Language and Lit major), largely because of their experience in its institutions. My youngest son has been excluded from a preschool that touted its “inclusion “ program, from synagogue, from camp (if we could not both find and pay for a 1:1 aide on our own for day camp or find nearly $3000 for a 12 day residential camp session), from Hebrew School (for my daring to insist that he have only a single, cross-trained aide as in a truly inclusive setting), and from society at large, when he was the only Jew in his school and staff permitted other children to play “keep-away” with his Kippah. He became physically ill and was hospitalized as a result of stress from harassment by the children at one day camp, and staff did nothing even when the behavior was pointed out by our 1:1 and others. 1:1s have commented that they did not see children being friendly to our son, though program staff claimed they were. While inclusion efforts have increased, many individuals lag behind institutions in sensitivity, and institutions, while meaning well, often don’t practice effective, sensitive, or welcoming inclusion but stop at “special“ side-stream programs – separate and unequal. We persist in seeking inclusion, changing course, and speaking truth to power.
The images in this collection started as photos taken to illustrate a social story about proper Shul behavior. After a rocky start (e.g. “We include their children so well that parents don't want them “outed” as disabled so there are no others you can photograph.”), I met and photographed a number of feisty, successful, Jews who happen to both have disabilities, and make efforts to participate in community. (When you swim upstream, against odds and typicality, you have to be feisty to survive. ) I have been tremendously enriched by Marlee's tenaciousness, Paula's and Rollie's down to earth attitudes, Sharon's wonderfully quirky sense of humor, Sam's brilliant smile, Geordy's presence, Rachel's and Rebecca's ebulliance, and Alex's eloquence, as well as , always, Rafi's unpredictability. A panel on disability and inclusion in community will be presented on February 3, at the Walker Library, in Minneapolis. It is through us, and those like us, that Change Will Come.
... Jane Strauss, January 2011...