Posted by Michelle K. Wolf
The news that the Disney parks are changing the way they provide help to guests with disabilities has been BIG news for families who have enjoyed taking their child or adult with disabilities to the magical kingdom. For many of us, having trained, helpful staff and easier, quicker access to the rides and attractions at Disneyland has been very positive for the whole family, especially for siblings of a child with serious disabilities. In fact, some of the best support groups I have ever participated in have been the ad hoc variety with total strangers while waiting in the disability line for a ride.
Up till now, persons with disabilities were granted a Guest Assistance Card, which granted access through the exit or alternative entrances, providing a shorter wait typically than for other guests. Due to the fraudulent actions of a few, including some super-rich, super-obnoxious families who bragged about hiring “black-market” guides with disabilities for $130 an hour, the executives at Disney had to come up with a new, more, fraud-proof system.
The new program which starts Oct. 9th,is called the Disabled Assistance System, and will require a digital photo of the person with disabilities (an excellent idea), and it will offer guests a return time for an attraction, one at a time, based on the current wait time (not such a good idea) and will be in effect at all Anaheim and Orlando parks
For persons with a physical disability and who use a wheelchair, or scooter, they will still be able to use the exit/alternative access to the rides. Disneyland, the older of the two parks, has fewer rides that can accommodate guests with mobility issues in lines, while the newer Disney World has many more ADA-accessible rides. Since our son, Danny, uses a walker/wheelchair and is mostly focused on the less popular rides such as Winnie-the-Pooh and Pinocchio rides, we aren’t too worried about excessive wait times for those attractions, but I know other parents are angry, especially those who have sunk major money into annual passes for the whole family.
As Jo Ashline of Special Needs Orange County posted about her 11-year-old son with autism, “Andrew is severely cognitively delayed. When he sees Radiator Springs Racers, all he knows is “OMG! MY FAVORITE RIDE! …LET’S GO ON MY FAVORITE RIDE, WAIT WHY AREN’T WE GOING ON MY FAVORITE RIDE?!!!!” He does not understand the concept of having to check in at a designated kiosk in order to get a designated time to return to his favorite ride on the planet, only to have to go back to another kiosk for another designated time for either the same or different ride.”
The Autism Society of Los Angeles issued a press release, expressing concern for the new policy. “For many families with children with autism, Disneyland is one of the few places of real joy. This is a result of Disney Parks’ wonderful accommodations for our families, said Judy Mark, a close friend and Government Relations Chair for the organization. “To take that happiness away would be tragic.”
So, I have a suggestion to the head honchos at Disneyland— why not let the kids/adults with autism set up a schedule on the day(s) they visit for up to 7 rides each day when they first check in at Guest Relations? They can be given a designated time for check-in at those 7 rides, and the fast passes for the general public can be adjusted to take those riders into account. A schedule can be printed out, and emailed to a smart phone. After those 7 rides, the guests will need to sign up at the kiosks for additional rides one at a time, but at least the person with autism will know with certitude exactly what order and when they will be going on their favorite rides. Less tantrums, less tears, more joy for all.
Now that would really be magical.
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. . .
September 17, 2013 | 10:55 pm
Posted by Michelle K. Wolf
The first time a total stranger handed me something “to give to your son” was at the Disney on Ice Show/Finding Nemo in 2004. Our son, Danny, was around 10 years old, and although small for his age, he probably looked too old for the stroller he was using at the time due to his motor disabilities.
This ice show was one of the first live shows he had seen, and he was smiling at seeing all his favorite fish friends skating around the rink. We had arranged for disabled seats, so he could stay in his stroller and have a great view of the action below. Right after the intermission, a middle-aged man wearing a well-worn Hawaiian shirt walked up to me and shoved the garish plastic clownfish wand at my hand, mumbling something about “your son” and quickly walked away before I could protest or even say thank you.
I didn’t know what to think. Did we look that poor? Was Danny looking off at another kid waving around the Nemo fish wand and that gentlemen had caught the eye glance? Then I realized it was given to us out of sympathy, wanting to do something, anything to make the moment better. I was too embarrassed to take it home, and left it behind in the arena.
Then, the older and taller Danny got, the more unwanted gifts came our way. Most often they were plush stuffed animals or candy, neither, which held any appeal to Danny. His big sister took the stuffed animals and I threw away most of the candy. Sometimes people gave us storybooks, which we kept around.
After a while, I came to call this the “Tiny Tim” syndrome from the Charles Dickens story and laughed it off.
On our way to tashlich at the Santa Monica beach a few weeks ago, we were slowly walking Danny out onto the sand, when a stranger shoved a glittery, girl’s T-shirt with a Harley-Davidson decal on it. We tried to say no thanks, but the woman was insistent. So we took and added it to the discard pile at home.
For all those anonymous strangers out there who are moved to hand us a toy or other item, please keep objects of pity to yourself and instead, just give us a smile.
September 10, 2013 | 10:02 am
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.
August 30, 2013 | 6:11 pm
Posted by Michelle K. Wolf
Among the serious and shallow issues popping up in social media this past week was a story that you may have missed. A Canadian family in Ontario, with a 13-year-old son, Max, who has autism, received a horrible hateful anonymous letter from a neighbor who wrote, among other cruel things, “Do the right thing and move or euthanize him!!
The anonymous author of the letter (who signed herself, “one pissed off Mom") complained about the loud noises that Max makes when he is playing outside, and that her "normal" kids are upset at hearing Max. She then goes on to say, “You had a retarded kid, deal with it properly!!!! What right do you have to do this to hard working people!!!!!!!”
To her credit the mom, Karla Begley, has responded with a public stand against intolerance and hate. She said in an interview with blogger Ellen Seidman,
“I will not stoop to an insulting level. What I have to say is about tolerance, acceptance and respect for kids with special needs…. If Max's sounds bother someone, I'd hope that person would let us know in a respectful way. Give us a chance to handle it instead of being cowardly about it. I'd rather people bring things out in the open.”
Maybe if this pissy Mom took her kids over to Max’s house once in a while and had actually gotten to know Max, their whole family would have been more tolerant and understanding of his loud noises.
In fact, a new study in the UK released today showed that children who are exposed to people with disabilities — either directly or indirectly — have more positive attitudes about those with special needs.
In a survey of 1,520 kids ages 7 to 16, researchers found that increased familiarity with those who have disabilities led to more positive feelings. Even having a close friend or family member who had friendships or acquaintances with someone with a disability helped to lessen the negativity and fear.
“We have known for some time that integrating children with disabilities into the regular classroom can improve attitudes. What we have established here is just how much of a difference a greater presence in day-to-day life makes,” said Megan MacMillan of the University of Exeter Medical School in England who presented the findings Thursday at the British Psychological Society’s annual conference.
As we enter this period of personal introspection during the High Holidays, let’s add to our communal to-do list the need to create more opportunities for our typical kids and their families to talk, play and hangout with families who have kids with disabilities.
Inclusion is good for the kids with disabilities but it’s even better for the typical kids.
August 23, 2013 | 6:01 pm
Posted by Michelle K. Wolf
My motivations for attending LimmudLA last week were far from spiritual—I didn’t feel like cooking on my birthday weekend, and looked forward to being away at camp, far from a long to-do list of personal and professional tasks.
So, away we went to the Brandeis-Bardin Campus, not really sure how it would work bringing along our teenage son Danny who has significant developmental disabilities. If the sessions weren’t a good fit for Danny, and if the onsite childcare didn’t work out, we would simply just take turns going to the many options available – text study of many types, history, art, Krav Maga (Israeli self-defense), Jewish story telling and much more. See the full Jewish Journal article on LimmudLA Fest here.
With help from Akiko Yonekawa, a Limmud LA Fest Co-Chair and who works at the camp, we had a comfortable, disabled-access cabin, with a walk-in shower and grab bars in the bathroom, plus we were located close enough to most of the action for Danny to use his walker. There were ramps to get up and down the hilly area, although it was a workout to push a wheelchair up to the top.
As it turned out, the biggest limitation to my participation was a nasty headache/sore throat that forced me to rest instead of attending as many sessions as I wanted to. Danny loved the joyful, eclectic outdoor Kabbalat Shabbat service with talented singer/songwriter Noami Less, and felt at home at the traditional egalitarian minyan held both Friday night and Saturday morning.
The childcare staff from Habonim Dror Camp Gilboa were fine with us dropping off Danny for a few hours here and there, giving us time to take a walk around and visit the horses (one of them gobbled up my spare banana in a single gulp) or attend a more abstract, intellectual session that would be lost on Danny.
I led a session on “Special Needs and the Jewish Tradition” attended by a small but highly engaged group of attendees, including a middle-aged woman who is hearing-impaired and also having physical challenges. She shared with the group that when a Rabbi once said “deaf and dumb” she was furious, since the two attributes aren’t automatically linked together.
LimmudLA is part of global movement of thousands of Jews in more than 60 locations worldwide who facilitate, participate in, and are passionate about Jewish learning in all of its forms, and is all about diversity, community and volunteerism.
I was so glad to find that Limmud LA lived up to those ideals and created an inclusive, welcoming environment that can serve as a model for the whole Jewish community year-round.
August 11, 2013 | 1:07 am
Posted by Michelle K. Wolf
Although the fifth and final season of the TV show 'Breaking Bad' starts Sunday night, I only started watching previous episodes recently. I had heard many years ago about this AMC series, but had little interest in following the story of a chemistry teacher diagnosed with lung cancer who turns to cooking meth to make a bundle of cash to leave behind for his family. Free time is a precious commodity and I sure didn’t want to waste it on watching a show with which I couldn’t connect in any way.
But after a colleague at work mentioned that the main character, Walter White, has a teenage son with mild cerebral palsy (CP), I had to pull myself away from my Mad Men addiction (love to cheer on Peggy Olson) and watch the show.
The son, played by actor Roy Frank “RJ” Mitte III, actually has CP, although milder than his character, Walter White, Jr. who is shown walking with arm braces and has significantly slurred speech. Shortly after Walter White first “breaks bad” in Season 1, there is a scene in a clothing store in which some kids from Walter White, Jr’s school are making fun of his disability, and his mom walks over, ready to give them a good verbal lashing. But out of nowhere darts his Dad, Walter White, who proceeds to beat the hell out of the young rude jerk, including stomping on his calf and saying to the effect, “having some trouble walking now, huh?” My inner pissed off parent cheered.
After Season 1, the show takes on a much darker descent into violence and greed and Walter White turns into a total absentee father for his own son (so much so that Dad misses his son’s 16th birthday party), but there’s a very small part of me that does connect with this nasty son-of-a-bitch as parent of a teen with CP. Walter White loves his son unconditionally, disability and all, and will fight to his last breath to protect his son (and young daughter) in his own sick, twisted way.
No matter how the show ends (and you know at least a few people are going down), I want thank the show’s Executive Producer, Vince Gilligan, for creating a show with a main character who has a disability, and then for getting it right by casting a talented young man who actually has that disability to play him.
And I’ve been inspired. Next time someone parks in a disabled parking spot without a placard I may just say in my best bad-ass imitation, “Stay out of my territory".
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.