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 818 353-1419.
6.14.13 at 5:24 pm | We need to add more seats at the "grown-up" table. . .
6.6.13 at 11:40 pm | Some kids don't really want school to end
5.23.13 at 10:12 pm | You can't get your cake without working the steps
5.17.13 at 6:13 pm | Disability advocates in CA: We need your help now. . .
5.8.13 at 9:28 pm |
4.26.13 at 6:59 pm | The 3rd ADVANCE conference in New York City is a. . .
6.14.13 at 5:24 pm | We need to add more seats at the "grown-up" table. . . (60)
8.20.12 at 10:33 pm | It's a good time to stop using the "r-word" (10)
6.6.13 at 11:40 pm | Some kids don't really want school to end (8)
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.
May 8, 2013 | 9:28 pm
Posted by Michelle K. Wolf
"But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, or you wouldn’t have come here.”
― Lewis Carroll, Alice in Wonderland
After you fall down the rabbit hole into Special Needs land, things are never quite the same. Spring doesn’t just mean Passover, blooming flowers and hay fever—its also IEP season (Individual Education Plans at public schools). A swing isn’t just a piece of playground equipment; it’s a chance to help your child self-regulate. And the more you can embrace all that is different, the easier your life will be.
In fact, there’s much that everyone can learn from a trip to Special Needs land:
April 26, 2013 | 6:59 pm
Posted by Michelle K. Wolf
In the field of social work, there’s a core concept of “starting where the client is at” meaning that the therapist or social worker needs to begin working with the client without pre-judging the situation, and not moving too far ahead of the client’s needs. So, for example, if the client is the mom of a newly-diagnosed 6 year-old with autism, it is probably not the right time to bring up where that child should live when an adult.
In a larger sense, the Ruderman Family Foundation is applying this same principle at their upcoming ADVANCE Conference May 8th in New York City. This 3rd annual conference is a gathering of leading Jewish philanthropists from North America, Israel and Europe who are dedicated to making charitable giving and grant making more inclusive for people with disabilities.
Co-sponsored by the Jewish Funders Network (JFN), The Jewish Federations of North America (JFNA), the American Jewish Joint Distribution Committee (JDC) and the Combined Jewish Philanthropies of Boston (their Federation), the conference is highlighting state of the art funding practices while also looking at the various needs of people with disabilities over their lifetimes.
Ephraim Gopin, Communications Director of the Ruderman Family Foundation, told me that one key strategy is to encourage funders to add special needs inclusion funding to the programs they currently support. With overall disability rates approaching 20% of the U.S. population, excluding children, teens and adults with disabilities (often along with their parents and siblings) means leaving behind a significant portion of the Jewish community.
Under the leadership of Jay Ruderman, President of the Ruderman Family Foundation, the ADVANCE conference has become a tangible reminder that our community’s leadership is finally acknowledging the growing numbers of Jews in North America and Israel with special needs, and is actively working to coordinate funding efforts. Unfortunately, the previous ADVANCE conferences have had few funders come from the west coast, a problem that I hope will be improved soon.
One very cool Los Angeles connection with this year’s conference is that ADVANCE conference participants will be invited to attend an evening performance of East Side Glory, a new production of the award-winning Miracle Project at the 92nd Street Y. The Miracle Project was started right here in Los Angeles by Elaine Hall, a good friend, and Mom of a teen with autism, and is now part of the Vista Inspire Project at Vista Del Mar. You can see the LA shows on May 5, 6 and 7th and purchase tickets here.The Miracle Project was the subject of the Emmy-winning documentary, Autism: The Musical.
In New York, as in Los Angeles, the show was written and will be performed by teens and young adults with autism and special needs, as well as their typical siblings and peers. Invariably, someone in the audience will say, “I can’t really tell who has special needs and who doesn’t". Now that, my friends, is truly a great place to start the communal conversation.
April 16, 2013 | 10:39 pm
Posted by Michelle K. Wolf
Long before I was married and had kids, I always imagined I’d be spending some quality time watching my children participate in some type of group sporting activity. Not that I had ever played organized sports as a kid-- there weren’t a lot of options for girls growing up then and I was pretty klutzy to being with—but it seemed like such a wholesome, warm-fuzzy type of family activity, complete with a pizza party for the team even if they lost.
As it turned out, our daughter had no interest in organized sports, and although she did play soccer one year at the Jewish middle school she attended (my joke was “bend it like Bracha”), the whole endeavor fell apart early on, and she went on to acting and theater activities.
And for Danny, our son with physical impairments, just getting around with his walker or having fun in the pool splashing around were big achievements. I heard about the Challenger division of Little League for kids with special needs, but couldn’t find one close to us, and all the Special Olympics programs seemed to take place during Shabbat.
Then, last fall, we were invited to join an inaugural AYSO soccer program in Beverly Hills for kids with special needs called the VIP program, started by two fathers who had wanted to get this program going for years. We even got to select Danny’s own number, and naturally, he picked “18” or chai. The volunteers and coaches figured out creative ways to get Danny to move across the field while he held on to his walker and kicked at the same time, although he did sit down for frequent breaks to play “hot potato” with the ball.
This week, the Friendship Circle of Angeles started a boys basketball program, and I wasn’t sure if this was going to be a good fit. But with gentle assistance from two amazing teenage volunteers, along with the coach and Rabbi Michy Rav-Noy, Danny participated, mostly from the sidelines. When the coach gave Danny the ball to make a pass, and everyone cheered him on, chanting “Danny, Danny”, his smile had no end. He came home very excited and kept saying, "baketball, baketball".
So I felt a strong connection to a family in Israel today when I read that Elad Gevandschnaider from Beersheva, a 24-year-old man with Down syndrome whom I had blogged about previously, was the recipient of the Award of Excellence from the IDF, Israel’s Defense Force, as part of Israel’s 65th anniversary. Elad has also been an active player at the Israel Tennis Center in Beersheva, and has won multiple Special Olympic medals around the world.
As the Israel Tennis Center press release says:
“Emotions ran high during the 65th IDF anniversary event, as the overflow crowd applauded for all of the award recipients, saving its loudest cheering for their very special soldier with Down’s Syndrome, Elad. The thunderous ovation did not stop until the Brigade Commander walked over to personally congratulate Elad for his achievement.”
Although people with developmental disabilities are exempt from army service, Elad volunteered and worked at an Israeli army equipment base. His family credits the Israel Tennis Center for helping Elad develop discipline, confidence and learning how to be more independent.
April 2, 2013 | 11:59 pm
Posted by Michelle K. Wolf
I have a very vivid memory of being back in 6th grade at the local elementary school in north Orange County, watching a film based on futurist Alvin Toffler’s best-selling 1970 book, Future Shock, which predicted a cyber-filled future with people feeling disoriented from, in his words, “ too much change in too short a period of time".
The most memorable scene was one in which two men were depicted getting married to each other. The howls and screams of “ICK” hung heavily in the classroom and I think the teacher had to momentarily stop the film and tell us to quiet down.
Flash forward to last week when our 18-year-old with developmental disabilities decided to watch the animated Disney version of “The Hunchback of Notre Dame” in which the high-spirited gypsy Esmeralda is the only one in the nasty Paris crowd during the Feast of Fools who steps in to help Quasimodo, the deformed hunchback and bell-ringer of Notre Dame. She tells the evil Frollo, that she feels empathy toward Quasimodo because as a gypsy, her people have also been shunned by the larger society. Not my favorite Disney movie by a big margin, but it got me thinking.
As Jews, we are keenly aware of the terrible virus of anti-Semitism that spread from our people’s earliest encounters with the Greeks, then early Christians and then to the Muslims, racial anti-Semitism and of course reaching its nadir with the Nazis (who also targeted homosexuals, gypsies and the disabled for extermination).
Because of this unfortunate historical legacy, we have a special obligation to speak out publicly for those at the margins of society, who just want the same rights as anyone else, including of course the right to fall in love and get married. Having two adults legally loving each other is not something to be scared of, no more than having people with severe disabilities living in the community.
Before the American Disabilities Act was passed in 1990, business could legally discriminate against people with disabilities, and physical access kept people with physical disabilities out of many museums, airports, and workplaces. This one piece of legislation literally changed the environment for millions of Americans, and we are all the better for it. Ending marriage inequality for same-sex couples will have the same long-term positive impact, but we need to stop saying “ick” and let everyone say “I Do” instead.
March 19, 2013 | 11:55 pm
Posted by Michelle K. Wolf
I’ve been getting the sad stories via email, direct messages on Facebook, and over Kiddush at shul—mothers sharing with me that their child with mild special needs has been asked to leave a Jewish school/camp or other setting. What’s so astonishing is that these are mostly kids with learning differences, or attention-deficit issues, not multiple developmental disabilities like our 18-yearold son, Danny. What is going on here?
The general arc of the story is that the kids are accepted into a program when they are young, then the learning difference surfaces, some intervention is tried, and when that isn’t working, parents are “counseled out”. Other programs, especially those geared for high academic achievement, will reject kids with learning differences outright.
As I told the Jewish Forward reporter in this article “Should Every Disabled Child Get a Jewish Education?" we didn’t even bother applying to a Jewish nursery school when Danny was 3 because it was so clear he needed specialized services such as speech therapy and physical therapy.
But as someone who studied Jewish communal service in grad school and has worked in the field for over 25 years, I can’t figure out why Jewish schools, camps and other Jewish organizations aren’t able to accommodate kids with learning differences. Frankly, it’s not that hard, and doesn’t take a whole lot of money. It isn't, as they say, rocket science. There are literally millions of resources available on the Internet.
A great place to start reading about differentiated learning is right in the Hagaddah, as part of traditional “Four Sons” portion. There’s the wise child, the wicked child, a simple child and the child who does not know how to ask. Each category of child is to receive different, personalized instruction. As it says in Pesachim 116a, “The parent should teach each child on the level of his/her understanding.”
If we could just apply that ancient wisdom to our communal formal and informal educational programs that would warrant one good round of off-key singing together “Dayyenu (It would have been enough)!”
March 8, 2013 | 12:29 am
Posted by Michelle K. Wolf
When your children are babies, the idea of them becoming teenagers and running around town on their own seems crazy. With less instinct than a household pet, infants are totally dependent on the grown-ups around them for everything—food, shelter, love. And yet, somehow they move ahead through the developmental milestones laid out so neatly in all those “What to Expect the First Three Years” books and start walking around, communicating, and becoming someone who hates anything cooked with onions.
For parents of children with special needs, that trajectory starts moving off course, at first just a few degrees, but then takes you to a whole different state of being, until you are so focused on trying out a new therapy, a different medication and getting through the annual IEP (Individual Education Plan) meeting with the public school district that you can’t possibly think ahead more than just a few months ahead.
But kids, no matter what, don’t stay young forever.
I had the opportunity this week to hang out with adults with special needs who are participants with JFS/Chaverim, a non-sectarian social friendship program. First was the 6th Annual Karaoke Competition at Temple Judea, loosely based on the American Idol format of having the audience choose a winner. Eight brave adults, 6 guys and 2 women, ranging in age from mid-20s to almost 60, took to the stage solo and gamely sang as the lyrics flashed up on a screen. Some used props, others went for the bold gestures while others focused on keeping their balance. They had practiced for weeks ahead with Gerry Dicker, the Program Coordinator who doubled as the KJ (Karaoke Jockey).
Family and friends were in the audience, and we voted for the top three--the winners received Target gift cards, All 8 participants received trophies with their names engraved on them. On a sadder note, two Chaverim members who had passed away, Lisa Pritikin and Lori Ravitz, were remembered by their favorite songs, including David Cassidy’s “I Think I Love You” which I counted among my personal favorites as a pre-teen in 1970.
Then tonight, as part of my work with Bet Tzedek Legal Services, I helped lead a self-advocacy focus group of Chaverim members, asking them about their daily lives, and in what areas they might need additional help. There were a dozen adults with developmental disabilities from age 24 to 66, with a wide range of abilities and diagnoses. Three parents and an adult sibling also participated. What was impressive about this group was the high degree of independence most had achieved, and how their families had helped them get to that goal. A few families had received high-level support and services from their service coordinators at the state-funded regional centers, but most were left largely on their own.
Some worked part-time and others had volunteer placements, often due to government programs that place caps on how much people can earn if they want to keep their monthly disability checks. There were frustrations with the Access bus system for people with disabilities that doesn’t always show up on time. But there were older adults who were learning how to use a computer, younger women who loved to go to the mall, and young men who had the travel bug.
They were all grown-ups, in every sense of the word.
February 27, 2013 | 11:32 pm
Posted by Michelle K. Wolf
For many parents of children with special needs the word “inclusion” seems like the elusive pot of gold waiting at the end of a rainbow. You’ve heard it exists, and think it would be great, but haven’t actually ever seen it.
Two different key events that focus on inclusion are taking place in early March, and both deserve our attention.
The first is the 2013 Ruderman Family Foundation Prize in Disability. Now in its second year, the Ruderman Prize is all about celebrating successful inclusion initiatives in Jewish communities around the world, which founder Jay Ruderman hopes will in turn, “spark some new inclusion programs”.
Last year The Ruderman Foundation received over 150 applications representing seven countries, and 10 prizes were awarded at $10,000 each. This year, the Foundation expects to award up to 5 prizes of $50,000 each. Let’s be clear about this –-this is not your usual prospective grant program; instead, it is recognition funding for an existing inclusion program that serves Jewish people with disabilities. Segregated programs that serve only people with disabilities, without any typical participants, are not considered to be inclusive.
“We are trying to show that special needs aren’t just a small niche part of the Jewish community, “ Jay Ruderman told me in a phone interview from Israel. “We need other Jewish funders to be out front in their support of special needs programs.”
One of last year’s award recipients was AKIM, an Israel non-governmental organization founded in 1951 by the parents of intellectually disabled children. When we were in Israel last summer as part of the LA Jewish Federation’s Special Needs Study Mission, we got to see first-hand the program AKIM created with the Israel Defense Forces (IDF) that was awarded a 2012 Ruderman prize for inclusion.
We met a 26-year-old man with Down Syndrome who had been working as a full-time volunteer at an Israeli army base, helping with the inventory of boots and uniforms. Instead of just throwing him into this situation, a whole year was spent getting him, and his soon-to-be-employers, ready, including special transportation training, inter-personal skills as well as training for the soldiers with whom he would work. The commander of the base spoke to us and shared how important that program was to him personally, and to the whole army base.
(Interested non-profits can apply online and applications are due in by March 18.)
The second event is the national television premiere of the powerful documentary, “Certain Proof” which profiles three youngsters with cerebral palsy whose families near Raleigh, North Carolina, are determined for them to be fully included in public school settings. We watch as Josh, Colin and Kay are continually asked to “prove” that they are academically at grade-level. Even when these students are provided full-time aides, some of the general education teachers are visibly uncomfortable with the students who have disabilities, and on thin pedagogic ice on teaching them.
As a mom of a teen with the same condition, the material presented hit home, hard. When our son first entered the public school system at age 5, it took a lawyer just to keep him in a non-segregated school, let alone a non-segregated classroom. Like the mothers shown in the documentary, I know that more is going on his head then he can express, but we are still working on basic typing skills at age 18.
The director of this award-winning documentary is Ray Ellis. He wrote that when he and his wife, Susan, were first introduced to a local non-profit dedicated to educating children with mobility and communication disabilities their “eyes were opened to an entire world we knew very little about….Our purpose in producing this documentary is to lift the veil of disability, showing these unique and wonderful children in a truer light.
The premiere of “Certain Proof” will be on Sunday, March 3 at 8 pm EST on the Starz and Family Channels. For more information or to order a DVD, go to www.certainproof.com
February 21, 2013 | 11:53 pm
Posted by Michelle K. Wolf
Purim is an especially festive Jewish holiday that captures the essence of many Jewish holidays--the bad guys tried to kill us, we triumphed, now let's eat and party! For people with sensory issues, it can be challenging since it tradtionally includes very loud booing every time that the name of the bad guy, Haman, is mentioned. To help prepare kids for all that noise, there's a lot of great tools available through the Gateways website including social stories about how to wait in line at a Purim carnival, a simplified version of the Purim story, and lots of games and other activities.
This year, Purim is on Saturday night, February 23 and Sunday, February 24, and there's a wide variety of celebrations in our area for children and adults with special needs. Our 18-year-old son with special needs used to cry and whine during megillah readings when he was younger, but now he can't get enough of Purim songs, parties and screaming out "BOO" on top of his lungs.We will be going to as many of these events listed below until I am the one crying!
A special thanks to HaMercaz for sharing this list:
Yachad LA Purim Extravaganza
Saturday Night, Feb 23, 7:45-9 pm with JLIC at UCLA
UCLA Hillel, 574 Hilgard Avenue
Chaverim Purim Party Hosted by B'nai David Judea
Sun, February 24, 1:30pm - 3:30pm
B'nai David- Judea 8906 West Pico Blvd. Los Angeles (Social Hall)
FREE! Costume Contest, Mishloach Manot Purim Baskets, Singing, Dancing and Snacks.
Please RSVP to Gerry Dicker at (818) 464-3360 or firstname.lastname@example.org
Etta Young Professional Purim Party
Sun, February 24, 12pm - 3pm
The Mark on Pico 9320 West Pico Blvd Los Angeles, 90035
Tickets: $25 per person.
To buy tickets and for more information, go to ettapurim.eventbrite.com or call 818-985-3882 ext 231
Friendship Circle LA--Purim in Africa
Sunday February 24t, 4:30-6:30pm, Megillah Reading at 4:40 pm
9051 W Pico Blvd, LA 90035 4th floor, One Block East of Doheny
Teen volunteers will be on hand to assist all children who have
special needs. Child's parent must be present.
RSVP to Chayie at 310.280.0955 or email email@example.com
Valley Friendship Circle and Camp Chesed Family Fun-Stival
Sunday, Feb. 24, Adar 14 12:00pm, Megillah Reading 12:3
"Orange Delight" Purim Feast 1:30Magic, Game Booths, Prizes & Awards, Live music,
Megillah reading and much more! Adults & Children Grand Masquerade Contest!!
Weisman Estate 5324 Genesta Ave, Encino, 91316
February 14, 2013 | 11:57 pm
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”.
February 4, 2013 | 12:50 am
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 13, 2013 | 12:24 am
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 | 2:14 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 | 11:43 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.