Slideshow a part or apart

T his 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“ sidestream 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 2010

1.Attending a small synagogue in which Rafi could explore, feel at home, see and touch ritual objects, was important for his growing Jewish identity. It was not enough; some thought his behavior disruptive and sought to exclude, rather than educate him.

2.“ My friend the Rabbi” adds an important dimension to Rafi's life – but one that, is diminished by unwitting assumptions about his abilities and congregational dynamics of exclusion.

3.Since Rafi was excluded at age 3 as 'too disabled' from an 'inclusive' Jewish preschool, he has attended Lubavitch schools, for at least part of the day or week. They- and we- have found a way. The attitude there is epitomized by “ Of course he should be at Cheder, he has a Yiddishe Neshoma”

4. Rafi's PCA drives him to Cheder and helps him to maintain control and focus in class. During class, he is as prone to goofing off as any other 13 year old, and it can be tough to find a balance between control and letting him BE.

5. During Recess, Rafi is truly just one of the guys hanging out by the fence.

6. I like going to Lubavitch because my friends will be there!! ...Rafi...

7. It took several weeks to become comfortable enough to get in the pool. Helping the teacher and watching “other kids” provided major incentives.

8. “ Can we go to the JCC pool? Will kids be there?” ...Rafi...

9. It's very important for Rafi to return to the same environment such as camp, both for consistency and to develop relationships. His Jewish identity is to some extent tied to his friendships. Unlike the stereotype, people with Autism feel emotions and need friends, keenly, even when their responses appear odd to others.

10. The hallways of the JCC are an interaction point for everyone who comes here, to mix and mingle. “ Where am I going?” ...Sharon... “ I like to come to the JCC because I do a good job and feel a lot happy coming here.” ...Rebecca...

11. It is fun getting to use the machines in the gym. ...Rebecca... I love to do exercise and to use the pool too. ...Rachel...

12. I liked the music but wanted it more in English so I could understand it … .Rachel... I liked singing Tumbalalika with everyone. .. .Rebecca...

13. Rachel was more aware of my presence at a Yiddish Vinkl concert than I would have preferred, but it was lots of fun watching her really get into the music!

14. Getting there takes more effort. I can slide into a regularsized car using a transfer board, or I need to special lift to get into a van, SUV, or bus. Since I no longer drive, more planning is needed to arrange transportation to places I am interested in going . ...Paula

15. Sitting down, I'm on par with everyone else; I just bring my own chair along. ...Paula...

16. I had planned to attend a meeting of a shul committee Paula chairs; On arrival I found that Marlee is a committee member. Disability does NOT mean disinvolvement!

17. I have been working out a little over 2 years at the JCC. Inclusion has brought opportunities the able bodied world takes for granted such as independence in scheduling and choices. ...Marlee...

18. I am happy to be able to work out with my trainer Eric once to twice a week because of the Sabes JCC's Inclusion program. If it wasn't created I would not have a place to go to work out. I tried going to other gyms and my experience was they did not want to adapt their programs for people with disabilities or offer trainers to do one on one sessions... Marlee ...

19. Where there's a will , there's a way! I've been working out at the JCC for 15 years. A person with a disability needs to stay fit in order to take care of herself and I keep going back because I'm going to get "THAT BALL" if it's the last thing I do ! ...Sharon

20. I have been going to Torah Study at Bet Shalom for ten years. I like the opportunity to sit and think about the Torah, but I don't say much because I don't know it that well yet. I followed in my mother's footsteps; she used to go to Torah Study, l'dor vador. ...Sharon...

21. Let's get going here! Chairing a committee is sometimes frustrating because trying to get it to run smoothly is difficult when the whole committee is not there. I do it because inclusion is important. ...Sharon...

22. As a young adult, Geordy continues to participate in education at Mount Zion. Wednesday evenings, he checks in and helps with cleaning or attends special events in the Religious School.

23. The first time I followed Geordy around at Mount Zion, he was learning to use the dishwasher, cleaning new goblets while reviewing some Hebrew words with his 1:1 aide and the Inclusion Coordinator.

24. Mount Zion has always welcomed Geordy as a full member, including him fully with his peers and congregation. ...Stacey, ( Mom) ...

25. Our family went to hear Jewish music at a coffee shop in the community, to find that Sam was there with some friends. His mom owns the shop and extends inclusive opportunities beyond “formal” events in a welcoming space.

26. I love working at the JCC fitness desk on Fridays. I see so many people I know there. I wish I could be there more than once a week ... Sam...

27. Everyone benefits, when we are seen for who we are, appreciated for our gifts, allowed to participate in a manner that is accommodating and respectful, and ultimately embraced by our community. ...Anita, JCC staff...

28. Eric Schaeffer i s the best. He helps me exercise on Fridays after I am done working. He helps me so much and has become a good friend to me. ... Sam ...

29. Dialectical Provocateur As a Jew with a disability, I prefer disability to mental Illness, I often feel like I am playing alone in a world of unjust perception, however, when in the cathartic constant embrace of the arts, I feel I can design a universe to challenge current perceptions, through a dialectical dialogue, of what is, and what I demand for the future to be as a reflection of my human rights. Always Music . ...Alex...

30. Erudite Clandestine Conductor. The parquet atelier of the world of apocryphal perception often forces me to turn my back, I was accepted into the mainstream; That is not an honest representation of what many Jews with Disabilities encounter in life... Isolation, and locked doors, Not playing for only myself, playing for a people, Rarely do I show the honesty and romance of the music I am creating. Lights above my head, walls yet to break through. From the imaginative music of a world I envision, a world that I will die for so that others who come after me do not have to. ...Alex....

Slideshow a part or apart

by Jane Strauss on Jan 17, 2011

Accessibility

Categories

Tags

Upload Details

Usage Rights

Statistics

Slideshow a part or apart — Presentation Transcript