Posted by Michelle K. Wolf
Were all pre-modern humans brutish and nasty? Were the ill and disabled dispatched to their fate in the wilderness for the “greater good’? I shuddered when I first read that in ancient Sparta, the high priest inspected every newborn and if the child had a disability of any kind, the authorities killed the child immediately.
But the past isn’t completely dismal. A friend sent me a link to a fascinating recent story in the New York Times titled, “Ancient Bones That Tell the Story of Compassion” that discusses how archaeologists have found evidence in human bones that at least in some places in the world, people with life-long disabilities were taken care of by others.
In the area of present-day northern Vietnam, two archaeologists from the Australian National University in Canberra found one skeleton around 4,000 years old buried in a fetal position. All the other skeletons were found laid out straight. Upon further investigation, it became clear that this adult had been severely physically disabled for at least a decade.
“His fused vertebrae, weak bones and other evidence suggested that he lies in death as he did in life, bent and crippled by disease… he had little, if any, use of his arms and could not have fed himself or kept himself clean. But he lived another 10 years or so. ..They concluded that the people around him who had no metal and lived by fishing, hunting and raising barely domesticated pigs, took the time and care to tend to his every need. “
And this wasn’t the only isolated example. Other archaeologists have unearthed similar stories told by the bones left behind, such as boy from about 7,500 years ago, found in Florida, who had a severe congenital spinal malformation known as spina bifida, and lived to around age 15. (Spina Bifida is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal.)
I was deeply moved by reading this article and hope you will be too. With all the darkness and cruelty that we’ve been witnessing in this, our “modern” era, maybe we need to go back in time to find the communal kindness of humanity.
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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 24, 2012 | 9:36 pm
Posted by Michelle K. Wolf
As a society, we’ve grown more tolerant of people from different races, sizes and abilities, but we are truly able to accept people whose communicative ability far outstrips their outward behavior?
The question becomes key to the acceptance of non-verbal autistics who are able to use typing devices of various kinds to communicate their ideas, needs and wants, but can only vocalize a few words, coming across like toddlers even if they are teenagers. This dichotomy of inner intelligence/understanding vs. outward strange behavior is at the core of the remarkable and important memoir written by Ido Kedar, a 15-year-old teen in Southern California with autism (and a long-time family friend).
Titled, “ido in Autismland: Climbing Out of Autism’s Silent Prison” the book chronicles his journey from age 12 to age 15, and shares what it is like to go from being silent to having a voice, and his dream for his friends and other non-verbal autistic people to be liberated as well. As family friends (we first met Ido and his family in The Miracle Project theater project, now at Vista Del Mar), we have personally witnessed this transformation, and always learn something new from him at our 2nd night seders together.
As his mother, Tracy, explains in the introduction to the book, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get the words out or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.”
With the assistance of Soma Mukhopadhyay, who discovered a method called “Rapid Prompting” to teach her own severely autistic son, Ido learned how to point at letters on a board, slowly spelling out words, and eventually transitioning to typing on an iPad as well.
Ido’s talks about his frustration and resentment of so many of the “experts” he encounters who doubted his intelligence and misinterpreted his behavior. For example, he sometimes ran over to a window during therapy sessions when he was younger and the therapist thought he was “fixated on cars” but all he was trying to communicate is that he wanted to go to his car and go home.
In fact, one of my favorite stories is that at one of the schools Ido was attending, the administration didn’t believe that Ido was actually capable of self-initiated communication until he started inserting expletives with each of his vocabulary words. Amazing what a well-placed f-bomb can do to get some people to believe.
Although Ido’s intellect is finally given expression after he is able to point/type letters, he is still unable to control his body’s impulses. He writes, “I live in a world of high thoughts and primitive impulses. So I impulsively pour things down the drain or open things I shouldn’t because I follow my body in those moments.” His whole sensory system is wired differently than typical people so his sensory experiences are very different; he can see people’s auras, so that his “mom is blue and my dad is yellow”. He feels a need to taste objects and when he hears notes in music, he can see each note visually. No wonder it is so easy for him and other non-verbal autistics to feel bombarded with external sensory information.
Ido struggles with his faith as well. " I’m forced to doubt when I very much need God”s love and tenderness. I know that God is more than a wish-fulfiller. I understand that, but I wish now to have God’s love send me a cure…”
Another ongoing issue is wanting friendship, with Ido’s sad description of autism as “an isolating illness”. He provides some strategies on how to be a friend to someone with autism. For example:
“—Don’t patronize, even if the person seems ‘low functioning’. Who knows what is trapped inside?
--Be friendly and say ‘hi’ even if the autistic person is not animated in expression or doesn’t say ‘hi’ first
--Connect in the ways you can.”
Like a tour guide in a foreign land, Ido’s powerful words give us a window into a world most of us will never experience nor fully understand. This book should be recommended reading for anyone studying to be a special education teacher or therapist and for families and friends as well. We can all share in fulfilling Ido’s wish that “one day all non-verbal autistic people will have the opportunity to learn communication and show the world that lack of speech is not the same as lack of understanding.”
November 16, 2012 | 5:30 pm
Posted by Michelle K. Wolf
Earlier this week, I was thinking about what I wanted to blog about this weekend and there were so many good topics to pick from.
There was our son, Danny, with significant disabilities, celebrating his almost-18th birthday at Fairfax High School and loving all the attention and gooey chocolate cake. Or the banquet Wednesday night celebrating the merger of Etta Israel Center in Los Angeles with OHEL Children’s Home and Family Services of New York, ushering in more and needed residential and day programs for Jewish adults with developmental disabilities. And I am still glowing from getting to meet in person the four beautiful young women from the Sundance Channel reality series “Push Girls” at the Disability Rights Legal Center dinner last night.
But the videos of those incoming missiles into Israel forced me to re-think what was the most pressing issue, so here we are, having to visualize people in wheelchairs, or who use walkers, some young and some old, having to rush off to bomb shelters when they hear the sirens, scared to death they won’t make it in time.
When we were in Israel this summer as part of the Special Needs Study Mission sponsored by the Los Angeles Jewish Federation, we visited Ayalim, a project in the Negev for college-aged volunteers who commit their time and sweat equity to build villages, improve the local community and work at family centers. As part of the project, they included six young adults with physical disabilities. In order to ensure the safety of those young adults they built their caravans extra-strong, in case they couldn’t get to the near-by bomb shelters.
Another place we visited in southern Israel was Aleh Negev, a village/campus in the middle of the desert for children, teens and adults with severe multiple disabilities. Created by the charismatic Major General (Res.) Doron Almog for his own son, and others in similar situations, Aleh Negev is a model program, filled with compassion and the highest-quality care. They serve children with severe disabilities all over Israel, but residential facility in the Negev is home to 135 residents, with 150 staff members and hundreds of volunteers.
One of more heartbreaking notes I wrote during the summer mission was this: “Staff takes all the residents at Aleh Negev twice every day to the bomb shelters for a short time, so when they get the incoming missile warning, they will feel comfortable going and staying there.”
This is what is on the Aleh Negev website today:
“The entire village has been at high alert since Wednesday afternoon, when air-raid sirens began sounding with increasing frequency…Aleh’s cadre of devoted caregivers have been working under extreme and difficult conditions. Many have left their homes to spend extra hours at the village taking turns in shifts to ensure that everything is under control; others have brought their own children to Aleh Negev to ensure their safety. The groups of Sherut Leumi (National Service) girls have demonstrated dedication above and beyond the call of duty, choosing to sleep overnight in the village to help residents. “
May there be peace again soon.
November 11, 2012 | 12:19 am
Posted by Michelle K. Wolf
It was surreal to be in the hospital room at LAC+USC talking with the hospital staff about what to expect in the days ahead in hospice care for our long-time babysitter and housekeeper, Maria Jeritza Sagastume, who was sleeping on her side, an IV in her bruised and swollen arms. At age 46, with two minor children and a 24-year-old daughter, Jeritza’s body was shutting down due to an infection and the relentless tumor in her brain.
I thought back to the first time we had met Jeritza.
After our first child, Rachel, was born back in 1991, we realized that we could need reliable childcare so I could return to my Israel advocacy job at the Los Angeles Jewish Federation. I heard too many stories about infants getting sick in day-care centers but we couldn’t swing the cost of having someone in our house on our own. A good friend from shul was pregnant with her #2, and was interested in part-time work and day care, so we decided to share a babysitter.
Back in those pre-Craig’s List days, it was a little more complicated to find in-home childcare. Our friend suggested taking out an ad in La Opinion asking for an English-speaker, and we had multiple candidates.
Jeritza was a little nervous during the interview, but spoke in fluent if heavily accented English about the twins she had taken care of, as well as the Jewish older woman she had worked for who had taught her how to manage a kosher kitchen. Jeritza had come from Guatemala in search of a better life, and was a single Mom with a beautiful three-year-old daughter that a neighbor babysat while Jeritiza worked. No other candidates came close to her experience.
After four months of maternity leave I went back to work, exhausted and nervous about leaving my beautiful little girl alone with a stranger. But Jeritiza told me it would be okay, and it was. Our friend’s son started coming over a few months later and the two were like brother and sister, hiding in the closet together, dumping baby powder over each other’s hair, and laughing over every little thing. Jeritza had a schedule all figured out, with their eating and napping schedules mapped out so that child received undivided attention for part of the day. The kids blossomed, and when they turned two, we enrolled them in an Israeli Gan (home day care). We gave Jeritza plenty of notice, and thought that was the end of our employer/employee relationship.
Fast forward to after Danny, our second child was born. Jeritza was working for someone else, and we had hired a friend of hers who didn’t drive. But by 13 months, when Danny’s developmental milestones were lagging behind, we needed to enroll him in an Early Intervention program three mornings a week which would mean someone to drive him. Along with Early Intervention was Occupational and Physical Therapy at Cedars-Sinai, and although I had cut back to part-time work, I still needed someone who could drive Danny to all these places as well as our daughter’s after-school activities; Jeritza came back in our lives. She caught on quickly to the exercises we were instructed to do daily with Danny, stretching his arms diagonally and encouraging him to roll and crawl.
Although she left us again a few years later to follow a boyfriend to Iowa, we stayed connected. We provided references for other employers, and when she came to Los Angeles with her two kids, we employed her again a few days a week. She helped us with the move to our new house 12 years ago, while pregnant with her third child. On Fridays, she helped cook Shabbat dinner, taking special pleasure with making a sweet tzimmes and perfect matzo balls. When we went out of town, she was the house sitter. No one else but her has ever changed our Passover dishes, and she was there to help with my Mom’s shiva minyans in our home six years ago.
Even when she wasn’t working for us regularly, we talked. Sometimes I would call from the car, and we would catch up with the kids and other people we knew in common, from former/present employers to her siblings still living in Guatemala.
In July of 2011, she collapsed with a seizure while signing up her son for summer school and the diagnosis at Kaiser was swift and cruel—a brain tumor --glioblastoma, grade IV.
Her funeral services were yesterday, and I still can’t believe she’s really gone. We will stay close to her children, doing what we can to help, but it feels like an important part of our extended family has disappeared. We will miss you, Jeritza.
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.