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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.
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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 5, 2012 | 5:48 pm
Posted by Michelle K. Wolf
You may have missed it in all the post-debate chatter, but the issue of disabilities as part of the national domestic agenda came up not once but twice during Wednesday’s night debate, both times by President Obama. This is a pretty big deal, as every possible issue/cause wants to get in a mention during a presidential debate with 60 million viewers. With so many worthy topics out there competing for attention, I was happy to hear that the D-word had made the cut even if there were criticisms of how Obama framed the issue
The first mention was in regard to how best to trim the federal deficit, with Obama trying to make the point that both revenue and spending needed to be addressed:
“Let — let me just finish this point because you're looking for contrast. You know, when Governor Romney stood on a stage with other Republican candidates for the nomination, and he was asked, would you take $10 of spending cuts for just $1 of revenue, and he said no. Now, if you take such an unbalanced approach, then that means you are going to be gutting our investments in schools and education. It means that — Governor Romney talked about Medicaid and how we could send it back to the states, but effectively this means a 30 percent cut in the primary program we help for seniors who are in nursing homes, for kids who are with disabilities.”
My Twitter feed, with many disability advocates, went crazy, although some were peeved that only kids were mentioned. For example, “Great Obama. So #disabled adults don’t exist?"
The second mention was in regard to Medicaid, known in California as Medi-Cal. Again, President Obama:
“As I indicated before, when you talk about shifting Medicaid to states, we're talking about potentially a — a 30 — a 30 percent cut in Medicaid over time. Now, you know, that may not seem like a big deal when it just is — you know, numbers on a sheet of paper, but if we're talking about a family who's got an autistic kid and is depending on that Medicaid, that's a big problem.”
On this one, my friends in the Autism community were happy to be singled out, but didn’t care for his wording since we didn’t use what we call “people first” language, because a person is more than their disability or condition. As Casey Lee @cleesouth tweeted, “In the debate Obama says "the autistic kid" um no, "kid with autism" is correct. They're a person before they are a disability.”
Although I can’t find Romney using the D-word himself in the transcript, he did talk about giving states maximum flexibility to help poor people in their own state, and then said a vague statement about the feds helping out states if needed. Never mind that some states have engaged in a "race to the bottom" as they do everything they can to drop poor and disabled Medicaid enrollees in order to save money, which can lead to terrible outcomes such as children with severe disabilities forced to live in nursing homes in Florida because they can't get a community-living Medicaid waiver.
As far as I’m concerned, getting our cause out there is better than not getting mentioned at all. To make it more participatory, maybe we can turn mentioning the “D-word” into a drinking game for the upcoming Veep debate?
September 13, 2012 | 11:17 pm
Posted by Michelle K. Wolf
It’s hard for any parent to leave their five-year-old at his or her first day of Kindergarten. Will our child make friends easily? Will some bigger, nastier kid bully them? And most of all can the teachers and school administrators be trusted to take good care of our child?
This whole transition is even scarier when you have a child who is non-verbal or very limited in his ability to express himself in any meaningful way. That’s why my stomach churned when I read a recent NY Times opinion piece on the ugly side of school discipline, made worse by the fact that my husband had gone to college with the author, Bill Lichtenstein.
In that piece, Lichtenstein relates how he and his wife found out that their 5-year –old daughter Rose (who had speech and language delays) was being kept in a seclusion room at school for up to an hour at a time over the course of three months as punishment for behavior issues at first and later, for not following directions.
When the parents were finally called by the school to get Rose because she had taken off her clothes they found her “standing alone on the cement floor of a basement mop closet, illuminated by a single light bulb. There was nothing in the closet for a child — no chair, no books, no crayons, nothing but our daughter standing naked in a pool of urine, looking frightened as she tried to cover herself with her hands. On the floor lay her favorite purple-striped Hanna Andersson outfit and panties.”
Really hard to read, and jolted me back in time when our son Danny (with cerebral palsy and developmental delays) was 9 years old and having a lot of trouble with walking and balance issues. We were working with the doctors to get the right “cocktail” of prescription drugs but he was losing a lot of hard-won mobility and whining even more than usual.
His 4th grade teacher at the local LAUSD elementary school was convinced that it was all “behavior” and when he wouldn’t sit down one day in a chair, she kept him in a kneeling position for hours waiting for him “to get up and walk over to the desk” where his juice and yogurt were waiting for him. I went a little berserk upon hearing this, and starting calling the principal, the Special Ed Administrator for the Sub-District (don’t ask) and even the School Board Member. Meetings followed, and plans were drawn up, and basically the teacher was told she wasn’t allowed to do that again. I also looked around for a class to transfer him away from this teacher as fast as I could. Other staff members took me aside and whispered to me that I was doing the right thing.
These examples of abuse in the name of discipline are why many parents of kids with special needs are beginning a national crusade to get cameras put into special education classroom. According to ABC News, parents in states such as Ohio, Texas, Michigan, New Jersey and Tennessee have started on-line campaigns with petitions, videos, etc to bring awareness of this issue. Some parents have smuggled in audio recording devices along with their children’s backpacks so they can hear for themselves what is happening in the classroom, and then can document abusive behavior to doubting administrators.
One parent in Ohio, Tara Heidinger, said that her son Corey, 8, has autism and can become very upset if changes are made to his schedule or usual routine. One day he came home from school and said the teacher was "mean" to him. Later on some of his more verbal classmates told her that the teacher’s aide had grabbed Corey by the arm really hard and screamed in his face to stop him from crying. When she went to the principal to complain, “She didn’t believe what I was telling her” and said that the boys were making up the story due to their autism. Without any proof of the attack, nothing changed.
Having cameras inside classrooms may sound too much like “Big Brother” for some people, but for kids who aren’t verbal, having an extra set of eyes may be what is needed to prevent abuse.
If you want to sign on, go to http://www.change.org/petitions/cameras-in-special-needs-room-for-safety