Posted by Michelle K. Wolf
As a non-profit professional in Los Angeles, I’ve worked at both Jewish and general charities. While it can sometimes be more comfortable for me to work in the Jewish community, I find myself stretching more as a person in the non-Jewish environment, especially during the casual conversations over lunch, when African-American and Latino colleagues on occasion will share painful memories of discrimination.
So, as I am busy promoting and participating as a parent disability advocate with Jewish Disabilities Awareness Month during February, I am also mindful that this is also Black History Month, I am drawn to the parallels of each group, struggling to move out of the margins to claim their rightful place in our society.
When someone makes a snap judgment of your potential ability based solely on your appearance, that hurts. When dreams are taken away from you because of stereotyping and myths, that’s cruel. And when you can’t even receive the same level of education as your peers, it makes it incredibly difficult to ever catch up.
Some have commented that although the civil rights movement began with the black community’s own self-empowerment and organizing, it later grew to include others, including many Jews, who stood up and walked hand in hand against injustice. As the Black History website says, “The Civil Rights Movement was not about black and white, it was about right and wrong.”
So, how do we apply that to the Jewish Disability Awareness Movement? I worry that the families touched by disabilities are spending too much energy pointing fingers and talking amongst ourselves, complaining and wishing we had a more inclusive community. It’s time to take our issue to a new level and actively enlist the support of our extended family, friends and congregants.
Just like the Civil Rights movement of the 60s, we need a multi-pronged approach that uses a combination of grassroots activism along with high-level meetings with the top professionals and lay leaders to create the needed changes in attitude, funding and the willingness to make this issue a priority.
And this movement is really about helping to ensure the future of the whole Jewish community; As Jennifer Lazlo Mizrachi points out in her recent article in The Forward about ending discrimination against children with disabilities in our day schools, “Approximately 200,000 Jewish children in America have some sort of disability.”
With those numbers, it’s time to get organized, grow our cause and start singing together, “We shall overcome”.
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. . .
February 3, 2013 | 11:50 pm
Posted by Michelle K. Wolf
We just returned from a fun, tiring and expensive day at Disneyland and our 18-year-old son, Danny, with multiple disabilities loved it, especially the Winnie-the-Pooh ride which he went on five times in a row (my husband was the saint; I bailed out after two whirls in the honey pot). Turns out that lots of people in Southern California don’t really care about the Super Bowl but they do like going to Disneyland when it’s sunny during the winter months.
Everywhere we turned, there were people with disabilities—kids in wheelchairs, adults in manual wheelchairs, and seniors in electric wheelchairs, not to mention all the people with canes and walkers. Even though Disneyland has made it harder to get a disability pass, the disability lines at the exits of most rides were substantial, although still quicker and easier to negotiate than the regular lines.
The reason why so many people with disabilities visit Disneyland is much more than it being simply a fun destination – they really “get it” when it comes to making people with disabilities feel comfortable. Every “cast member” as they call their staff, is trained on disability awareness, from the guy in the parking lot to the lady playing the role of Ariel the mermaid. We expect the ride operators to ask about Danny’s ability to transition from his stroller to the ride, but not necessarily the hostess in the restaurant, and yet she knew to ask.
Since the passage of the American Disabilities Act (ADA), the Disney people have done their best to make their rides as accessible as possible, but since many of the classic rides, such as the Fantasyland rides from the various movies (Peter Pan, Snow White, etc.) were built in 1955 when the park first opened, the exits are very narrow, making it very tricky to have people exiting and entering in the same space, yet they find a way to make it happen. Today, cast members came out and helped with the lines when needed, and made sure there was room for all the various types of mobility equipment.
I was most impressed that Cast Members were able to remember who belonged to which stroller/wheelchair, and had ours waiting for us at the end of the ride (a shout out to the guy at the Nemo ride!). Another nice moment was when the staff on the parade route were cool with letting Danny stay in his stroller and not transfer to the bench even though the other people around us in wheelchairs had made the switch to reduce the crowding in the area.
So, what are the take-away lessons for the Jewish community, especially during February, Jewish Disabilities Awareness Month?
1) Everyone in the organization needs to be trained in disability awareness, especially the staff in the parking lot, security guards and receptionists
2) Don’t go to “no” as a first response. If someone is asking for an accommodation, be creative and try to come up with a solution before worrying about the expense or lack of specialized staff
3) Treat each person with disabilities as an individual and try to avoid rules or regulations that disregard personal preferences
With a little more effort, maybe there can be more families and adults singing “Hi-ho, Hi-ho, it’s off to shul we go!”
PS. Please check out all the wonderful events happening in Los Angeles during Jewish Disabilities Awareness Month and take the inclusion pledge here.
January 12, 2013 | 11:24 pm
Posted by Michelle K. Wolf
As part of the conservatorship process for our now 18-year-old son with multiple developmental disabilities, we had a meeting recently with staff from the state-funded Lanterman Regional Center to determine what legal rights we as parents should retain now that Danny is no longer a minor in the eyes of the law. One of those rights is deciding where to live.
In the course of the meeting, the staff member asked Danny, “If you weren’t able to live at home with Mom and Dad, where else would like to live?” Danny, who has limited verbal abilities, quickly said, “Ramah!” without any prompting or hesitation. Danny has spent the past four summers at Camp Ramah in Ojai, CA as part of their “Tikvah” special needs program. Despite the fact he is always homesick for us in the evenings for the first few days of camp, Ramah is the place that Danny regards as a home away from home. All year long, he points to his Camp Ramah T-shirts from the previous summer, and talks about his favorite parts of camp: “Ramah pool”, “Dance” and “Meir” his amazing 1:1 aide.
I tell this story in light of this week’s announcement that the national Foundation for Jewish Camp (FJC) has just received a $60,000 research grant from Dr. Allan and Nan Lipton of Hershey, PA to map current services available to children with special needs and physical disabilities at nonprofit Jewish overnight camps across North America. The funding will be used “to provide a thorough understanding of the options Jewish camps offer to children with special needs and provide a baseline for expanding services” according to the press release from FJC.
As things stand now, 150 Jewish overnight camps serve nearly 75,000 children each summer but they are only able to accommodate fewer than 1,000 campers with special needs, and many camps have waiting lists for those few slots. Jewish overnight camp is the perfect place for typical campers to meet, and engage with those campers who have special needs, especially those with more severe developmental disabilities such as our son.
Since most Jewish day schools and many religious afterschool programs aren’t able to accommodate kids with special needs (don’t get me started), camp is the one place where typical campers can meet kids like Danny in the cool of the pool, or during structured “buddy time”. Without the worry of academic success, it is an easy and organic environment to connect with someone a little different from you.
FJC will be partnering with Laszlo Strategies, a firm that helps non-profit organizations in their efforts to champion the causes of people with physical, mental, neurological and developmental disabilities, as well as to promote medical science. I hope that FJC and Laszlo Strategies will be able to collect and analyze the data quickly, and get more kids with special needs coming home from camp with a duffel bag full of dirty laundry and plenty of happy memories to last for next 11 months.
December 16, 2012 | 1:14 am
Posted by Michelle K. Wolf
I first heard about the Connecticut school tragedy from the TV stations at the gym, and felt like someone had punched me in the stomach. I wanted to hear more about what had happened but couldn't stand to keep listening as the terrible details begin to emerge.
In my mind, I could easily picture the chaotic scene inside the elementary school, with screams over the public address system and teachers locking their doors, and telling their small charges to get into the closets for safety. I could imagine parents feeling the floor drop out under them when they learned that their first-grader had been killed. So utterly horrible and senseless.
I felt another pang of dispair when I read that the gunman, Adam Lanza, had been diagnosed with Asperger’s, sometimes characterized as a mild form of autism with a high degree of social awkwardness. I thought of all the many remarkable teens and young adults with the same diagnosis we have met along our journey with our teenage son who has developmental disabilities. So many of them are smart, caring people, who just want to be accepted as they are, quirks and all. Would they somehow be blamed for this atrocity? Would there be an immediate leap to brand all people with Asperger’s as prone to violence?
In a widely-circulated AP article, a Los Angeles expert quickly dispelled that notion.
"There really is no clear association between Asperger's and violent behavior," said psychologist Elizabeth Laugeson, an assistant clinical professor at the University of California, Los Angeles.
But many people over at WrongPlanet.net, an online community and resource for Autism and Asperger’s, are very worried that with all the media focus and frenzy on Lanza’s diagnosis, it will paint a broad brush of blame for all teens and adults with those developmental disabilities.
One individual with Asperger’s said he is “really worried about the hate now” and another wrote about that he’s been bullied and beat up for most of his life, and fears it will only be harder for him in the future.
A posting from Autism Rights Watch lays out the issue very well:
“The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being “autistic”, “odd”, “awkward”, “camera shy”, a “nerd” and “uncomfortable with others” does not cause a person to become a mass murderer. Autistic persons are more likely to be victims, rather than perpetrators of violence. “
Please, let's all work together to prevent another victim of this terrible tragedy.
December 6, 2012 | 10:43 pm
Posted by Michelle K. Wolf
As we get ready to celebrate another 8-day marathon of carbs, candles and explaining to our non-Jewish colleagues why we aren’t taking off time from work, it’s hard not to compare this year’s Hanukkah with those of the past.
To paraphrase from a major Jewish holiday, Why is this Hanukkah different from every other Hanukkah? For parents of children and young adults with special needs, I feel that we have moved the communal discussion from a marginal issue in the Jewish community to a much more mainstream concern. The passionate flame that so many parents and families have kept alive for years is growing bigger all the time. The recent two-day national conference after the Jewish Federation’s General Assembly on “Opening Abraham’s Tent” is one shining example of this.
Another sign of this shift in collective consciousness was that the JTA (the Jewish global “wire service “) today included a special Hanukkah feature on “8 tips for an accessible Chanukah” from Gateways Access to Jewish Education, a Boston-based agency for Jewish special education. The tips are creative, inexpensive and easy for every family/Jewish organization to incorporate into their celebrations and parties.
Here in Los Angeles, many of us were thrilled when The Shalom Institute/Camp JCA Shalom chose to award Elaine Hall with the “Vision Award” at last week’s gala, under the evening’s overarching theme of “Celebrating a place where everyone belongs”.
Elaine Hall is the mother of Neal, a Camp JCA Shalom camper who has non-verbal autism and communicates mostly by typing on his Ipad. Elaine is also the founder of The Miracle Project, a non-profit that uses drama as a social/recreational modality to reach children and teens with special needs, along with their typical peers. Neal is now working at the camp once a week, helping to harvest fruits and vegetables from their organic farm.
Neal, now 18 years old, attended JCA Shalom camp for the first time many years ago with our son Danny, and another two boys with developmental disabilities. We had turned to Bill Kaplan, the Executive Director of Shalom Institute and Joel Charnick, Camp Director, to test out a new model of sending kids with more severe disabilities to camp with their own aides, paid for by the family or by a state-funded Regional Center.
Although they hadn’t developed the infrastructure for such a program, Bill and Joel said yes to our request, and together created a warm and supportive camp environment. Since then, the Tikvah program at Camp Ramah in Ojai has welcomed campers such as Danny who require an aide, and even added a family camp called “Ohr Lanu” for the parents, siblings and children who have special needs.
As the teens of today grow into adulthood, there is still much to be done to create the needed residential, employment and social programs under Jewish auspices but it does feel good to see the lights of inclusion glowing brighter all the time.
November 4, 2012 | 1:04 am
Posted by Michelle K. Wolf
“Still alive in day 5 of no power here in Lower Manhn, battery drain for every breath. Social media organizng svd mylife” – Tweet from Nick Dupree, artist, creator of “Dust Bunnies in Space”, disability advocate and living on a ventilator since 1994
(Note, his electricity finally came back earlier today, Nov. 3rd)
When the lights went out in their 12th floor Tribeca apartment in lower Manhattan, Nick Dupree and his partner, Alejandra Ospina, were faced with a huge crisis—how were they going to keep Nick’s lifesaving ventilator going? They had batteries on hand and a NY fire department station across the street with a generator, but the batteries needed changing every three hours, and Alejandra is also in a wheelchair. Evacuation was not a safe option.
Help arrived in the form of nearby friends, Facebook posts, tweets, and a network of other disability activists, all working together, some as far away as Boston, to make sure that Nick and Alejandra would have not just the batteries for the vent, for also for their cellphones and feeding pump, suction machine, oxygen concentrator & wheelchair that all needed power. They also needed distilled water for the machines plus food to eat and cash to buy other supplies, since ATMs without electricity weren’t working either.
Read the whole harrowing story here written by blogger and artist Crystal Evans-Pradha from Boston, who is a work-from-home-mom to her 2 year-old and uses a wheelchair due to mitochondrial myopathy (neuromuscular disease). She responded to Alejandra’s initial Facebook post and with a friend who worked for the Red Cross, took the 200- mile trek to NYC help deliver car batteries, distilled water and other needed supplies.
One lesson we can all learn from this story is that first-responders need to know who is the most vulnerable in different neighborhoods, and plan ahead how to get help to those people. Here in Los Angeles County, there’s a simple way to make sure people like Nick won’t be left alone – the Specific Needs Disaster Registry (SNAP).
But as we saw with Sandy, and what is likely to happen after a major earthquake in Southern California, we are advised to “to prepare themselves for up to 72 hours of self-sustained survival, should that become necessary.” During those three days, what will happen to the most vulnerable among us, such people with severe physical disabilities or the frail elderly? We will need to turn to our neighbors, our friends, and our faith-based and community organizations to knock on all the doors, and ask if any extra help is required. And if all else fails, there’s Facebook and Twitter.
October 24, 2012 | 9:44 pm
Posted by Michelle K. Wolf
Ann Coulter’s tweet during Monday night’s Presidential debate:
“I highly approve of Romney's decision to be kind and gentle to the retard.”
When I first caught wind of this tweet scrolling on my Twitter account (@specialneedsima), I optimistically thought that perhaps Gov. Romney had announced some new initiative to help people with intellectual disabilities while I was away from the TV and that Coulter was giving a snide, back-handed endorsement. Of course, I was wrong --she was talking about President Obama.
Why would she use such a nasty, mean and outdated term to describe Obama? Since her hateful words first appeared, many sane people on both sides of the aisle have said that her use of the word “retard” is simply unacceptable. Many Hollywood stars have also weighed in against the “r-word” as we parents call it and on the Special Olympics blog, a thoughtful open letter was posted by John Franklin Stephens, a 30-year-old Special Olympian with Down syndrome.
Among those of us who cringe everytime we hear the cruel and all too frequent use of the r-word, it sears as deeply as “kike” for Jews or “nigger” for blacks. As CNN noted, “Congress banned the use of the words "retard" and "retardation" in 2010 in federal health, education and labor laws in favor of using the words "intellectual disability."
It seems to me that Coulter used the word “retard” for the same reason our teenager with intellectual/developmental disabilities unbuckles his seatbelt on the freeway—she really, really, really wants a whole lot of attention! And what’s the best way we can shut down that “attention-seeking” behavior as the experts call it?
I have two words: behavioral modification.
It’s as simple as ABCs:
A) Antecedent—As it says in the literature, “The antecedent is an event that occurs immediately prior to the behavior” Tough to nail down here. Did she feel ignored? Did she feel left out during the debate between presidential candidates?” Does she really think that President Obama scores low on standardized intelligence-quotient tests? We don’t really know exactly what led to this offensive outburst, but it’s clear that being outrageous is the way she has decided to “brand” herself in the marketplace of ideas.
B) Behavior- The behavior needs to be described in a specific operational sense. Here, it’s her use of the “r-word” to disparage anyone or anything she dislikes.
C) Consequence- Ah, the fun part. Coulter’s megaphone can be muffled if people stop buying her garbage. As Patt Morrison commented in the LA Times: “She (Coulter) is quoted and courted far and wide by the conservative media. She commands reported $20,000 speaking fees.”
It’s up to to all of us to make sure this intervention sticks.
October 13, 2012 | 11:49 pm
Posted by Michelle K. Wolf
It’s really wonderful that more kids with special needs, including those who aren’t verbal, are now able to have a bar or bat mitzvah, but shouldn’t that simcha be viewed as a beginning of engagement with the Jewish community and not the end?
The first special needs bat mitzvah I attended was for a sister of a friend I had made at camp in high school, and the bat mitzvah was a very small affair, held in a chapel of a large Westside synagogue. As I recall, the expectations of the sister (who in retrospect probably had mild intellectual disabilities), were very low, and there was a sense that although the event was certainly worth celebrating, the idea of a Jewish kid who wasn’t college-bound was a big shanda (disgrace).
Since then, I’ve attended many special needs B’nai Mitzvot, some large-scale events with live bands playing at the after-party, and others, purposely kept small to minimize the noise and sensory overload for the Bar Mitzvah boy on the autism spectrum. The kids usually rise to the occasion, and it isn’t unusual for the parental speeches to get the tear ducts flowing. As the four-page feature spread titled, “Autistic boy’s bar mitzvah is a milestone of faith, hard work” in the Arizona Republic documented, long-time family members often find it “amazing” that the teens with special needs are able to lead the congregation in prayer.
Our son, Danny who is now 17, had his bar mitzvah a month after turning 14, on a crisp Hanukkah Rosh Chodesh morning at Temple Beth Am in Los Angeles, and although he has very limited verbal abilities, he was able with verbal cuing, to say an aliyah, the traditional blessings before and after the Torah reading, have a typical friend read some of his thoughts on being Jewish, and also used his voice output device for the thank-you portion of the service.
But it can’t just end there. And in Los Angeles, we are very fortunate to have a wide array of post-B’nai Mitzvah programs for our teens and young adults.
Danny waits all year for summer time which means a month away at Camp Ramah California where he is part of their Tikvah program with a full-time aide, During the school year, he participates in a Confirmation Class at Vista Del Mar, part of their Nes Gadol Jewish education program for kids with autism and other developmental disabilities. He also goes to OurSpace social and recreational programs through Valley Beth Shalom and squeezes in a week or two at Etta Israel’s high-spirited day camp program. Whew!
This past week, Danny rocked the night away at a very hip Erev Simchat Torah celebration at IKAR; he was very disappointed to hear that his Mom’s feet were worn out before the very last hakafot (round of dancing). And then this Shabbat morning, he was asked to do the first aliyah of the first Parasha of the new Jewish year, Bereshit. He stood up in front of the congregation, taller and more confident than during his Bar Mitzvah and slowly did his best to pronounce each word of the blessings. It was a great beginning.
PS If you want to hear first-hand about our recent Special Needs Study Mission to Israel sponsored by the Jewish Federation of Greater Los Angeles,and how you can get invovled in next steps, rsvp at www.jewishla.org/special-needs-panel to attend a November 5th presentation.