Jane: Parent, Photographer, Advocate, Jewish and #Autistic

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Autism Unveiled Week 3

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Autism unveiled…what an interesting image in light of all the “awareness” asserted in the media and on the interwebs. The latter generally follows a pattern of veiling its communication in euphamisms, bias, or in ulterior motives. The veil seeks donations. The veil seeks, or exudes, pity. The veil horrifies. The veil pleads. The veil is a filter, showing either the best or the worst aspects of a stereotypical “person with autism.” Yet, most of the autistic people I know don’t veil things, don’t filter, are confused by euphemisms, and just want to be able to live our lives as others do, without the fetters or barriers placed on us by social assumptions of who we are or what kinds of people are “acceptable.”

One of my favorite answers in a job interview situation has always been: “my strong point is – you never have to guess what I am thinking, and my weak point is – you never have to guess what I am thinking.” I see other heads nodding, as I write this. I see a pattern, too, that as my unfiltered statements emerge, others take offense, either because I have trodden on the toes of one of their sacred cows, or because they dislike the pattern I describe, or because, despite what I see, through my eyes and the experience of family and friends, I am not “positive enough.” And this takes me to the interlinked identities that are my subject today.

Parent. Photographer. Advocate. Jewish. Autistic. All came together in a photo project I undertook nearly five years ago, trying to document inclusion in a faith community that claimed to “get it.” And indeed it did, for a rather narrow segment of the population – those who were accustomed to isolation, who did not expect respect or real inclusion, and who were brought up to not rock the boat or exert anything resembling rights.

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As an Autistic person, I see patterns. I see the similarities and differences, the patterned shapes, in how one parents five kids, as well as how the world has dealt with them and the family. I see the visuals that make up my photos. I see patterns of injustice, but would prefer to disbelieve them. I want to believe what I hear, and am sometimes blindsided by untruths told, in the regular course of life, by others.

As a Jew, I see injustice too, and the answer to that is “Justice, Justice you shall pursue.” To a great extent my Advocacy comes from that source, and from what I like to call my “righteous indignation meter,” a growing uneasiness that expands until the only stim that will lessen it is action. Part of that stim resulted in the photo project mentioned above, which has morphed with the times. It, and its resulting discussion guides, developed in 2010 through 2012, and are available under the title A Part or Apart? I have written about them before, and recount some of the experience here. It taught more me about the unreliability of institutions, their employees, and what is claimed than I really wanted to know. In a very real sense, it killed my innocence, my Panglossian belief that all was for the best.

In February, a bunch of mostly neurotypical people who make their livings in the social service and religious administration sector trumpet “Jewish Disability Awareness Month – From awareness to Inclusion.” I used to believe in this. No more. Inclusion in Minnesota happens, for our family, in spite of the official programs “supporting” it. What many in the Jewish communal services field call inclusion, is inclusion in name only. I will chalk it up to my own Autistic self and my eternal hopefulness that it has taken me so long to realize this.

Inclusion, living as typical a life as possible interacting with all kinds of people while still being himself, has always been our goal for our youngest son. After all, we reasoned, the days of institutional living are past – he will be living in the world. From early on, we have taken the approach “As much as possible,just treat him like a KID, because he IS a kid. Don’t overtherapize. Don’t overmedicalize. And use regular activities to accomplish therapeutic goals whenever possible.” At times his physical issues and independent development schedule have made this difficult, but I have sought out second and third and fourth opinions, we blazed our own trail, mostly managed to succeed, and his progress has amazed many professionals in the field. When institutions have actually worked WITH our family instead of rigidly within their own norms, he has been, on the whole, pretty happy – pretty good for a person who started out his life with 10 days on life support in the NICU, and who we were told would not survive at all.

Once upon a time, what seems like a lifetime ago, our son was 12 years old. That September, we hired a new personal care attendant (PCA) for our son. He was a newcomer to the area, Jewish, a perfect match for what we and our son needed, and our son loved him. His mom, a survivor of head trauma, was a fantastic woman, versed in organic gardening, childbirth, many other useful things, and we became friendly. So, when the “Inclusion Director” at the local JCC told me she was planning an organic garden on the grounds for the next year but did not know about organic gardening, I thought of this newcomer. I made the match, and my friend went over to speak with the Inclusion Director, as I naively considered this a possible consulting gig for her.

The next time I talked with my friend, she was irate. The gist of what she had to say was that the institutional employee, in the name of “including adults with disabilities” was using them for free labor and this garden was going to be more of the same. OF COURSE SHE WOULD NOT CONSULT WITH HER. No reason to be complicit in such abuse, using, disrespect. That was a really big turning point for me, and the Righteous Indignation Meter’s sensitivity increased exponentially.

That year, I started working on the photography project which became A Part or Apart?. Little niggling issues started to trouble me, but I was committed to an exhibit at the very institution that was using free labor in the name of inclusion.

First, when I was looking for people in addition to my son to photograph, the “Inclusion Director” claimed that “we include children so well that their parents do not want them “outed” as disabled.” What. The. Hell. Having a disability was something bad…..not an inclusive attitude. The youngest person included in the exhibit and book was my son.

Next, the “Inclusion Director” touted her volunteer program, of which I was already suspicious. She was evasive about where volunteer work took place for some of the participants. Only after taking many images of them in the gym, did I find out that these participants were “volunteering” in a secluded sheltered workshop situation.

In retrospect I noticed that the “Inclusion Director” angled herself into photos. Of course she said pretty words: “Everyone benefits, when we are seen for who we are, appreciated for what we have to give, allowed to give in a manner that is accommodating and respectful, and ultimately embraced by our community.” But wait –who did she really see program participants as being? And how did she define respectful? And were participants embraced as community members or out of pity? And her tone – it was the epitome of condescension. My friend’s words made hers rankle….but it really WAS a technically good photo so it stayed in.

As I was scheduling shoots, I noticed other things too. Some of my subjects attended a “cafe” set up by a “special needs” organization, in large measure, because some of their friends attended and other events in the community were inaccessible. They asked me to take their pictures there. When I contacted the sponsoring organization, I was told that I could attend because I had a label, but that they would confiscate my camera if I brought it. How patronizing. I did not attend. I was not interested in the program, only wanting to go to photograph particular people from whom I had already obtained model releases.

The following summer, my son attended a four week camp, “included” in a program focused on community service. Only after the “Inclusion Director” decided, that he would be barred from some projects was I informed. There was a pattern here, too. “The other people will be upset seeing a special needs person touching food, or in their environment, or at all.” Perceived possible upset of those who were really part of the community trumped real inclusion every time. On only one occasion (legitimate because of allergy issues) was I consulted before the activity.

Now my son was growing up. I noticed that when he approached females near his age whom he had met at camp, the “inclusion director” would insert herself between him and them. The fact that he has to come close to figure out who someone is due to vision issues was ignored and her fear that he was a pubertal boy and might somehow see them in a sexual light trumped accommodations. She insulted me by offering us a free week of segregated field trips. I said, “Hell no,” my son had another inclusive activity that week. She had no clue. As time went on, in the name of inclusion more segregated programming appeared at the JCC. When I asked about it, I was told that they had to do this because “parents wanted it.” “Did the people other than parents want it?” No answer.

A “special” camp was included for young teens with special needs. Typical teens were recruited to provide role models there, at lower cost than the target group. Inclusive? NOT. The Special Olympics appeared as“Inclusion.” Sorry, that is inclusion only in the sense that it uses the same facility as everyone else. How many people without labels participate as other than as volunteers in Special Olympics?

That summer my son was enrolled in a theater camp that blew up big time. The “inclusion director” failed to adequately inform his PCA (an actor who attended with him) of others in the program wwhose needs might conflict. She did not accept responsibility for her error (which did result in a conflict), and threw my son out after the first day of a four week camp, meeting him at the door the next day with a large male and telling him he was not permitted to enter the buillding. It took three years before his resulting debilitating anxiety attacks before events in that building subsided. The JCC refused to work with his therapist or us to resolve the situation. And to this day, he will “high five” that person when she approaches him, but only because he cannot recognize her face and has no idea who she is, while fearing that if she ever gains control of the Scout troop that meets in the building, he will be expelled from Scouts.

Last year, when the JCC was included in a prestigious book of Jewiish organizations “promoting inclusion”, I figured out out that their claims of “inclusion” were to garner accolades from organizations in the greater Jewish community (which did not complete due diligence and simply accepted the assertions of the JCC) and not to really include, as we found out in 2012. Advocacy stepped to the fore again. I documented for the publisher what was actually listed under “inclusion” but the damage was done.

“Be cautious in your intercourse with the great;” said Rabban Gamliel, “they seldom confer obligations on their inferiors but from interested motives. Friendly they appear as long as it serves their turn, but they will render no assistance in time of actual need.” The Talmud nails this one – cold. “Shammai next tells us (in Pirkei Avoth, 1: 15(b)) to “say little and do much.” Rather than pumping yourself up with boastful and vainglorious promises, deliver on your promises, or better: deliver without the bragging. What counts is what you accomplish, not how much you promise.”

So– Jewish Disability Awareness Month – From Awareness to Inclusion– Nice try, but it really does not wash for us. Saying does not make it so.

Jane Strauss, Minnesota, U.S.A.

Jane is part of the Autism Unveiled Project – 6 weeks of posts by Autistic people commencing on April 2, 2015, World Autism Awareness Day.

1 Comment

  • Lindsay says:

    It is very disappointing that such organizations exist. I hope you have since found other, more positive programs for your son that are willing to focus on helping him pursue his interests and develop relationships with his peers.

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