Posted by Michelle K. Wolf
“We spend our whole lives wishing. We weren’t so freaking’ strange.
They make us feel the pain. But it’s they who need to change”
—Gingy (The Gingerbread Man) in Shrek, the Musical
This week we are celebrating the 21st anniversary of the American Disabilities Act (ADA), the landmark Federal civil rights legislation signed into law by President George H. W. Bush in 1990. It was quite expansive in what it covered and the overall goal was to make American society more accessible to persons with disabilities in many different ways – employment, public services, public accommodations, telecommunications and protection from retaliation for persons who assert their rights. It was, and is a very big deal for people with disabilities, especially in the area of physical accesibilities in which the design of government buildings literally locked people out from having a voice.
In religious life too, the ADA has had a huge impact because as synagogues and churches have been renovated or built new, they have generally followed ADA regulations even though not mandated to do so, and added in ramps, elevators and disabled parking spaces.
However, there is still much to be done in taking down the many social and financial barriers for people with disabilities, such as ensuring that adults with disabilities have full access to community-based services and supports, as well as meaningful employment opportunities.
For us personally, the ADA means that we can easily take Danny out with his stroller or walker into every part of the community and enjoy all that is available, from the Hollywood Bowl (although those elevators really need to be enlarged and modernized) to The Empire State Building. One of our favorite places is the Pantages Theater, which was built in 1930 and filled with historical charm; they have created two small disabled seating sections with ramp access on either side of the orchestra section. Starting with “Wicked” in 2007, we have taken Danny to see many musicals such as “Mama Mia” and “West Side Story” (and then ended up getting the DVD version for repeated viewings at home).
On Sunday, we went to the matinee showing of “Shrek: The Musical” and Danny was mostly enchanted with seeing the movie come to life on the stage, including dancing rats and a huge dragon puppet, although he was annoyed at any deviations from the movie version.
One of the highlights is when all the “fairy tale” character misfits come together and mobilize themselves to fight back against the tyrannical Lord Farquaad, singing an anthem of empowerment, “Wave Your Freak Flag High.”
It was one of those “we’re not gonna take it” moments of people power over unjust authority, and the audience, including all the little kids present in the audience clapped heartily at the end. When the show was over, we wheeled Danny in his stroller into the lobby. Many of those same kids stared, some a little scared, some curious and some with hostility. Just as I was feeling down, an older African-American woman came by. “Did you enjoy the show?” she knelt down and asked Danny. “Yeah” Danny answered. “God bless his soul” she said to us and walked away.
As Pinocchio said at the end of the song, “I am wood. I am good. Get used to it.”
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July 20, 2011 | 1:14 pm
Posted by Michelle K. Wolf
A small news item on LA Observed caught my attention this morning:
“Lakers Center Andrew Bynum was videotaped parking his BMW across two marked disabled spots at the Bristol Farms store in Westchester. Joel Grover of KNBC has posted stills from the video, which the stations says was shot by a parking enforcement official.” He was unfortunately, not fined nor cited, which really pisses me off, since with a $14 million salary, the $353 fine would hardly be a financial hardship, and would have sent out a loud and clear signal that people who don’t have legitimate disabled placards shouldn’t park in disabled sports. Not ever. Even if you can rationalize it—“Um, these groceries are really heavy and I’m in a big fat rush to get to practice.”
We have had disabled parking placards for at least a decade for our son Danny, who has mild cerebral palsy. As we encourage him more and more to use his walker instead of his large-size stroller cum wheelchair, having access to the disabled spots becomes even more important to us in terms of mobility training and helping him to be independent. During his recent stay at Camp Ramah in Ojai, the camp put in a “curb cut” and laid down plywood to accomodate his mobility needs, which was truly heartwarming.
In general I find that most people are really good about observing the law and leaving the spaces open to those who really need them, but every now and again, there’s some jerk who decides he/she can’t be bothered to obey the law and be a good citizen. I don’t follow sports very closely (okay, hardly at all) but my friends who do tell me this isn’t the first time that Bynum has shown himself to be something less than a model citizen and display good sportsmanship.
Two suggestions for Mr. Bynum’s T’shuvah, or repentence, regardless of not getting fined:
1) Make a donation to a local charity that helps people with physical disabilities
2) Spend some time with someone in a wheelchair or a walker and experience life from their perspective, as did Yankees Manager Joe Giradi when as part of Yankees HOPE week of community service, he surprised an elderly blind Yankee fan and came to the stadium with her and her guide dog along her usual route—2.5 hours of train, subway and sidewalk.
Now that’s what I call walking the walk.
July 13, 2011 | 11:47 pm
Posted by Michelle K. Wolf
Since Danny is still at Camp Ramah, I’ve had a little more time to read my email inbox, and it is buzzing about all the proposed Federal cuts to Medicaid, (called Medi-Cal in our state) and how those cuts would impact families taking care of a child or adult with developmental disabilities. The Obama Administration is opposed to most Medicaid cuts, but the issue is still in play, tossed around like a political football.
Compared to Medicare and Social Security, Medicaid is the lesser known of the three major entitlement Federal programs, but is absolutely essential for the most vulnerable populations in society. As the Almanac of Policy Issues says, “The significance of Medicaid’s role in providing health insurance cannot be overstated. The Medicaid program covers millions of low-income women, children, elderly people and individuals with disabilities. “
For adults with developmental disabilities, Medicaid is their main source of funding for almost everything they need or do –medical care, in-home care, residential services, even transportation. For us, Medicaid is our secondary health insurance for Danny, after our private PPO insurance, and it has helped with big ticket items, like wheelchairs and voice output devices (which run around $8,000). If the program is block granted, that means states would receive a fixed amount of money, and many programs would be likely be drastically reduced or eliminated. With spending caps, the ceilings will be set well below current spending, again resulting in program cuts.
On The Arc website (the national group founded in 1953 by parents originally called the National Association for Retarded Children), there were moving stories about the four families who traveled to Washington DC last week to tell their story, including Natalie and Ruben from Texas.
I identified with them at once—parents of 31-year-old TJ, who was born with significant intellectual and developmental disabilities. He needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking, and preparing his meals. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. Medicaid Home and Community Services funding has also paid for modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.
If cuts are passed to Medicaid, there will be increased pressure for religious and faith groups to pick up the slack and fund/provide more help directly to their congregants and members. In essence, it would be turning back the clock to the time when some local communities did an adequate job of taking care of the vulnerable, and others didn’t. Doesn’t sound like a fair playing field to me.
July 7, 2011 | 9:13 pm
Posted by Michelle K. Wolf
For the past two weeks, our household has been strangely different – no puzzle pieces or Lego toys strewn around on the floor and poking up from the sofa, no strains of the “Macarena” and “Theme from Rango” can be heard coming from the Ipod, and the only movies playing on the DVD are art house movies from Netflix.
Thanks to the Tikvah program at Camp Ramah (California) and our wonderful 1:1 aide, Danny, 16, is mid-way through Session I in Ojai, the longest time he will have ever been away from home. A few years ago, we started Danny off with 2 weeks away, and have gradually increased his time at camp, until now he will be gone a grand total of 26 nights (but who’s counting?).
When Danny was little, the most we could hope for was one or two nights away—his complicated medication regime, his craving for routine, and his inability to communicate very much except for an emphatic “NO” and whining on demand. Family members have also given us some nights off which we appreciate, but the logistics are complicated.
We first got an entire weekend away when Danny was around 5 through a program at United Cerebral Palsy (UCP) called “respitality” in which local hotels provide two free nights of stay for the parents, and UCP provided a qualified respite worker from one of their many group homes to take care of Danny, all for free.
The respite worker was very competent and a warm, loving person, who unfortunately, couldn’t really get the hang of kashrut and according to our daughter, fed Danny cheese pizza with a kosher beef hot dog. Plus the respite worker let our daughter stay up way past her bedtime and watch “Jerry Springer” on TV. Oh well. Everyone survived.
But camp, both general and Jewish seemed like the better plan for some quality respite time. Danny first went to a summer camp sponsored by Ability First , and then JCA Shalom and now the Ramah special needs Tikvah program, where his favorite day of the week is Shabbat.
In previous years at camp, we were contacted often about various issues, but this year seems to be going smoothly after an initial bout of homesickness at night. We view on-line photos of him enjoying himself in his favorite place in camp—the pool—and read the blog written by the counselors, so we know all is fine, but it is both liberating and disconcerting not to know what’s happening with him every day.
We’ve decided that “no news is good news” and linger a little longer in the newly-installed hammock, savoring the free time and looking forward to his return in mid-July. Until then, there’s no reason to make the time go any faster.