Posted by Michelle K. Wolf
How do we collectively get our community to align its high values with everyday practice?
A new poll released today demonstrates the big gap between what we desire and what we actually have when it comes to welcoming Jews with disabilities. Although 89% of the Jews polled said they “strongly supported” including people with disabilities in Jewish life, 19% of Jews with disabilities in the sample also reported that they have “been turned away or unable to participate in a Jewish event or activity because of the disability.”
Valuing inclusion of Jews with disabilities polled higher than any other question in the study, including the centrality of Israel, marrying Jewish, or raising kids to be Jewish.
Professor Steve Eidelman, a leading disability expert said, “While it is wonderful for so many Jews to say they value inclusion of people with disabilities so highly, there is a great distance between the words and deeds in our community.”
A total of 2,607 Jews participated in the online poll, and 8.6% of those surveyed reported having a disability and another 22.8% said they either had a family member or close friend with a disability.
The poll was not a random sample; subscribers to the Jerusalem Post and/or Haaretz were asked to complete the survey, along with students from JerusalemU and thru social media channels. Outreach was also conducted with Jewish special needs programs such as Gateways in Boston, Jewish Family Service in Houston and the Tikvah programs at Ramah camps around the country.
Shelley Cohen, co-founder of RespectAbilityUSA and president of the Jewish Inclusion Project said: “When a Jewish family is told that their child cannot attend a Jewish day school, camp or other program because they have a disability, the community risks losing the entire Jewish family to participation."
In a conference call this morning she added that we need to be proactive in getting our schools, synagogues and camps to be more inclusive of Jewish participants with disabilities, and that it doesn’t need to cost much money to accomplish that goal.
The poll sponsors are hoping that the Federation system does a follow-up random study on this topic and also that all Jewish institutions form Inclusion Committees to make positive changes so that all Jews can be included.
A Jewish Leadership Institute on Disability and Inclusion will be held in Baltimore December 1-5 2013 to train Jewish communal professionals and educators on the nuts and bolts of inclusion.
RespectAbilityUSA is a new national nonprofit, non-sectarian organization
whose mission is to:
- Reshape the attitudes of American society so that people with disabilities can more fully participate in and contribute to society, and
- Empower people with disabilities to achieve as much of the American dream as their abilities and efforts permit.
Based in Maryland, it was recently founded by chair, Donn Weinberg and president, Jennifer Laszlo Mizrahi.
JersualemU is an online portal for Jewish distance learning and was founded in 2009 by Rabbi Raphael Shore, They have produced four 10-hour, online multimedia courses, has graduated more than 4,500 students, and is responsible for over 100,000 hours of Jewish and Israel learning by students worldwide. All of their videos are captioned to make it accessible for the sight-impaired.
12.5.13 at 8:56 pm | The first national Leadership Institute on. . .
12.3.13 at 7:51 am |
11.22.13 at 6:05 pm | When all four Jewish movements come together to. . .
11.15.13 at 12:00 am | Self-Advocates and Family Members are furious by. . .
11.3.13 at 10:36 pm | Teachers-in-training want to include more. . .
10.27.13 at 10:12 pm | A group of parents in the 50s and 60s refused to. . .
12.5.13 at 8:56 pm | The first national Leadership Institute on. . . (13)
4.21.11 at 11:23 pm | In the search for a "home" for our young adults. . . (12)
11.3.11 at 12:26 am | There's an epidemic of unhealthy weight for. . . (8)
August 3, 2013 | 11:08 pm
Posted by Michelle K. Wolf
"I spent the majority of my life hiding the fact that I am a sib."-- Ellie, from the Bay Area, student at Brandeis University, older sister with Austism Spectrum Disorder and other conditions
"Being the “normal” child comes with an invisible and pervasive weight that many fail to recognize." -Claire from Houston TX, student at Princeton, older brother with Asperger’s Syndrome
"Through the two of them, I discovered a whole new perspective of disability."--Renee, from Houston, TX, student at The University of Texas at Austin
Summer is the certainly the best time of year for a road trip, but for these three young women, who recently completed a seven-week 10,000 mile cross-country driving trip while interviewing 75 siblings of individuals with dfferent types of developmental disabilities along the way, the journey was about much more than the destination.The three "SibsJourney" students met while they were participating in a BBYO/Brandeis high school community-service oriented summer camp in 2011.
Starting in Texas, the trio drove the "sibmobile" in a gignatic loop of America, first heading east, then north, and then west. Along the way, they tweeted and blogged, racking up 12,452 hits.I have been following along their odyssey much of the way, connected to Claire, through a friend of my daughter from their Israel gap-year together.
They video-taped interviews with a diverse group of siblings in terms of age, diagnosis of the sibling, and how having a sibling with a disability has impacted his or her life. Overall, they found that many of the siblings they interviewed had mixed feelings about their brother or sister with a developmental disability.
As Renee posted on June 19, " Many people have had a very positive relationship with their sibling. It is important to recognize that although someone may have a positive relationship with their sibling, it does not mean that every memory is a positive one."
I've pasted in a sampling of two of their posts from their journey, and I encourage you to take the time to read all of the posts and watch the video segments on their website:
"The morning we left Atlanta, we got to speak with a young woman who is currently doing Autism research with Emory University. In addition to having an academic interest in Autism, she has a younger sister who is on the spectrum. She was sweet, intelligent, and compassionate and her story provided us with some new perspectives.
I’ve noticed that so many sibs are more compassionate and understanding than the average individual. Their siblings have taught them to appreciate every person’s abilities. Many sibs have also told us they’ve been called “old souls” in the past and often feel more mature than others their age."
And after an interview with a 18-year-old sibling in New Jersey:
"Natalie has a brother with autism. She has definitely struggled to come to terms with her family dynamic, often preferring to be out of the house except for “showering and sleep, that’s it”. She told us how despite her physical distance from her brother, he was constantly on her mind as she struggled with feelings of guilt about the opportunities and experiences that she was getting to have that would likely never be a reality for her brother."
These three remarkable young woman have together created a richly-textured peek into the the minds of siblings with special needs across the United States, and their project will continue to inform and educate long after their summer tans have faded.
July 23, 2013 | 11:03 pm
Posted by Michelle K. Wolf
When I was young, I eagerly looked foward to going away to "sleep away" camp every summer. It was a chance to get away from my parents, hang out with new friends and actually see the stars at night. I usually came home feeling more independent, sunburned, and with a new expletive or two learned from my bunkmates.
For our son Danny who has developmental disabilities, as well as his peers with other special needs, the time spent at Camp Ramah CA is in some ways, even more special. And for us, as parents, the time gives us a chance to take a vacation together, catch up with our own friends and maybe even paint that bathr oom we've been meaning do for months.
Here's why the special needs program at Camp Ramah is so great:
Reason #3 It is the only time all year that he is truly part of something "typical", even while being part of a special needs unit. With his professional 1:1 aide, he is able to participate in most of the programming, including an overnight camping trip. He loves the way Shabbat is observed at camp, with special songs, dances and rituals, as well as double time in the pool.
Reason #2-Camp activites aren't dependent on academic acheivement. You don't need to read at grade level to enjoy a nature walk or roasting marshmallows around the fire. The equalizing effect of camp helps everyone to feel self-confident.
Reason #1-Fun, fun, fun--camp is all about doing silly things together in groups, whether it's wearing your pajamas all day or singing until you are hoarse. There's no speech therapy. occupational therapy, or dentist appointments--there's enough of those before and after camp. While you are living in "camp time", there's just long sunny days of smiling-enducing activities.
July 12, 2013 | 12:06 am
Posted by Michelle K. Wolf
We can’t help but notice when someone looks different -- if they are very tall, or very short, or missing a limb for example. It is probably very primal, built into human nature as a protective strategy to separate out friend from foe. But if you are the object of that stare, it is still very uncomfortable.
Since you don’t see too many people without an AARP card using a walker, people can’t help but look at our son, Danny, who is now 18 and has cerebral palsy. When we first enter a store or restaurant, all heads will turn towards us, like a classic scene in a Western movie when the stranger first comes into the bar.
Both adults and children will stare although the adults don’t like to get caught in the act. You can almost see the thought bubbles over their heads:
“What happened to him?”
“Is he one of ‘Jerry’s Kids?’ ”
“Will he ever walk by himself?”
“I feel so sorry for that Mom”
I don’t really mind the kids, especially the younger ones, since they are just curious and probably haven’t seen a child with a physical disability. Once during a visit to the Zimmer Children’s Museum that included an exhibit with an ambulance and medical equipment, a child saw Danny using his walker with the tennis balls on the ends and yelled out to her Mom, “I want a turn with that right now!”. It took a lot of explaining to convince her that Danny needed it for walking, not for playing.
Most of the time, I ignore the stares and do my best to present a happy exterior but this can be tough when Danny starts to demand a Carmel Frappuccino in the middle of the movie or is whining about wanting to go home. He doesn’t realize that we are on public display. When I’m tired, hungry or just running out of patience, I start to fantasize about turning to the person looking at us and saying, “Keep staring and your face will freeze!”
But in more my more charitable moments, I view these staring episodes as a “teachable moment” for all involved. I say hello or nod with a smile, acknowledging their looks in the most positive way possible. Most of the time, the person will smile back, and that’s a whole lot better than staring.
June 30, 2013 | 2:05 pm
Posted by Michelle K. Wolf
It's one of those topics not discussed much away from parent support groups and the doctor's office, but lots of kids and adults with cerebral palsy (CP) drool due to low muscle tone. The younger kids wear bibs or bandanas but as kids get older, it's embrassing for them to have to keep wearing wearing either item, but until now, there haven't been a lot of good choices. Enter in an American-Israeli enterepreuneur with an 11-year-old son with CP, and you have the potential for a high-quality, good looking T-shirt made from bamboo that can easily absorb the moisture. Richard Nachum Kligman, the father of Moishy, along with five other kids in Beit Shemesh, is asking for people around the world to help support this new line of clothing, called, Mianzi though an online Kickstarter campaign that ends on Sunday, July 7th. Even the smallest contribution can help him reach the goal of $20,000.
“This is the first luxury fashion line keeping the special needs community in mind,” said Richard Nachum Kligman, founder of the special needs fashion line called Mianzi, which means “Bamboo” in Swahili and “A Face of Dignity and Prestige” in Chinese.The shirt’s material, Kligman said, is a blend of 70 percent bamboo rayon and 30 percent organic cotton.
“It’s very Eco-friendly, and the weave is a French Terry weave, which has a towel-like nature, perfect for drooling,” Kligman said. Our goal is to create a full line of products that brings comfort to everyone.
Interested individuals can visit the Kickstarter campaign page here.
UPDATED JULY 4 from the Kickstarter campaign:
"We are getting very close to passing our 3rd goal. As of this post we are only $301 away at which point we will be able to create a stunning website built on the Shopify platform.
Our factories are gearing up and the latest samples have been ordered. I should receive them within the next two weeks and so I will post photos as soon as I receive them.
Happy 4th of July to all those celebrating! I know it's a busy day for everyone so will keep this brief.
Here is an article written by Paul Allen, a well known entrepreneur and investor on why Mianzi really excites him. It is extremely well written so please take a look and share it with friends.
We only have 3 days left and it is hard to make the most of them when we are going full steam ahead into a holiday weekend, but 3 days is all we have. So please, if you can Email this link to the project with just 3 friends it would really help us get closer to reaching all our goals.
June 21, 2013 | 6:37 pm
Posted by Michelle K. Wolf
The saying that “a picture tells a thousand words” has never been more true than with the recent online criticism of a 2nd grade class photo from British Columbia in which a student who uses a wheelchair was photographed sitting off to the side, with a visible gap dividing him from everyone else.
The photographer, who was from an outside photo studio, posed the students in three, neat rows of benches with their teacher but placed Miles Ambridge, off to the side in his wheelchair. Miles, who has spinal muscular atrophy, is seen leaning as far as he can toward the other children with a smile on his face. You can see that photo here.
When his mother saw the printed photograph, she was deeply offended.
“I couldn’t comprehend how the photographer could look through the lens and think that [the original picture] was good composition. ... [T]his just boggled the mind,” said mother Anne Belanger, per the Toronto Star.
Guess the photographer just wasn’t thinking.
After having the photo published online in The Province, a virtual tidal wave of disapproval was directed at both the photographer and the school. Both publicly apologized and the photo studio, Lifetouch Canada, took a second class photo, in which Miles is seated on the bench, alongside his classmates. You can see the much more inclusive photo here.
Which gives us all something to think about.
June 14, 2013 | 5:24 pm
Posted by Michelle K. Wolf
Do you remember that feeling when you finally graduated from the “kid’s table” to the “grown up” table? At large family gatherings, the kid’s table was invariably a smaller, more flimsy table, shoved into some corner, or at the very far end of the main table, far enough away that you couldn’t really hear what was going on at the head of the table.
During this past week of graduations, awards, ordinations and celebrations, it seems that people with disabilities are beginning to get a seat at the main table, but we still need to set more places.
Reading through the passions of the “Outstanding Graduates” in last week’s print edition of the Jewish Journal, the words “special needs” and “disabilities” were mentioned over and over again. We have witnessed this personally, as volunteers who spend even a short amount of time with our son with special needs often come away transformed from the encounter, and determined to create a more inclusive community.
At the JFS/Chaverim event on Sunday honoring Sally Weber, the Jewish adults with developmental disabilities were literally the stars of the show, showing off their singing talents with no trace of stage fright.
On Monday night, we cheered as Danny’s Hebrew/Judaica tutor, Dov Gottesfeld, was ordained as a Rabbi by the Academy for Jewish Religion (AJR), and in the program, Dov wrote of his specialization in working with special needs students.
And the capstone event was the Tierra del Sol Foundation celebratory luncheon today at Sportsmen’s Lodge under the leadership of Steve Miller, CEO, who was part of the Los Angeles Jewish Federation’s Israel Special Needs Study Mission last summer.
Tierra is committed to empowering people with disabilities to fulfill their potential and desire to be productive citizens, as we all do. They accomplish this with post-high school educational programs, vocational training, internships, volunteer opportunities and paid employment, with a San Fernando/San Gabriel Valleys geographic focus.Like anyone else, young adults with disabilities need the chance to try out different jobs, and see what they like the most.
With over 800 people in attendance, today’s event was a chance to recognize the 144 community partners who provide volunteer, employment, education and transition assistance to over 600 adults with a wide range of disabilities. These partners include JFS/SOVA and the Jewish Home for the Aging Skirball Hospice, and a number of churches but unfortunately, not one synagogue --a real shanda in my humble opinion.
So let’s help enlarge the table for all—if any Jewish-affiliated agencies, shuls, schools or non-profits in the San Fernando Valley/San Gabriel Valleys want to be part of next year’s luncheon at Tierra del Sol, call 818 352-1419.
June 6, 2013 | 11:40 pm
Posted by Michelle K. Wolf
No more pencils
No more books
No more teacher's dirty looks
I can’t really believe that tomorrow is the last day of school. Tonight, I ran out at the last minute to buy gift cards for our son’s special education teacher, 1:1 aide and a few other classroom aides at Fairfax High School. We wrote out thank you notes, added some bird stickers and placed the new Willy Wonka DVD received from my sister in Danny’s backpack, all set for the big party tomorrow. But I still don’t feel ready for school and it’s familiar rhythm to end.
This is the earliest that school has ever ended, due to a new schedule that rings in the new school year in mid-August instead of the traditional after Labor Day . I’ve crafted a schedule worthy of a presidential hopeful in New Hampshire, with three different sitters/aides, his big sister, me and my husband all taking turns until Etta Day Camp and then summer school kicks in, with second session in the Tikvah Program at Camp Ramah California as the grand finale.
We’ve made a list of the top five places Danny wants to go while on vacation which include the beach, zoo, and plane museum and we all look forward to getting to sleep in a little later. But Danny has developed some very nice friendships with the other kids in his special education class, and after spending several years together, the group really feels like a big family, and he looks forward to his time there. He got sad when I told him that school was ending, and he wouldn’t see his classmates for several weeks. They do gardening together, food prep/cooking, and take community field trips by public buses to grocery stores and other public places where they will need to go as adults.
I remember counting down those last days of school, just itching for more time on my own, away from class assignments and homework. But since Danny’s main social interactions outside of the family take place at school, he’s a lot less excited about school ending. So it’s time to add some new educational apps to the Ipad, buy a whole lot of sunscreen and get in touch with my inner “oompa loompa” as we settle in for the long days ahead.