Sen. Chris Murphy (D-CT), accompanied by children with preexisting conditions covered under the Affordable Care Act, speaks at a press conference about the Senate health care bill. July 12, 2017. Photo by Aaron P. Bernstein/REUTERS.

Disability advocates helped save ACA

During the recent health care insurance fight in Congress, public attention was tightly focused on the early morning cliffhanger on the Senate floor with Sen. John McCain (R-Ariz.) dramatically voting against the so-called “skinny repeal” of the Affordable Care Act (ACA), also known as Obamacare, but many people didn’t realize that disability advocates also played a key role in rolling back the efforts to repeal the ACA.

One of the more searing images from the monthslong “repeal and replace” efforts in the House and Senate was a video of protestors from the disability rights group ADAPT, many in wheelchairs, outside of Senate Majority Leader Mitch McConnell’s office chanting “No cuts to Medicaid, save our liberties” as they were physically lifted and removed by the Capitol police. ADAPT is a grass-roots disability rights organization that started in 1974 in Denver to get wheelchair accessible lifts on buses. Since then, the group has created 30 chapters across the country and broadened its mission to advocate for community support for people who have disabilities so they can live outside of assisted-care facilities and other institutional centers.

Joined by Disability Action for America, a political action committee, along with many other disability and patient organizations, hundreds of advocates descended on Washington, D.C., over the past few months at their own expense, many with severe physical and medical challenges. They engaged in nonviolent civil disobedience and held vigils, waiting for marathon meetings to end and staying up for middle-of-the-night votes even if it meant sleeping in their wheelchairs.

Parents from across the political spectrum who have children with chronic diseases and disabilities also jumped into the fray, speaking out against the proposed changes to the ACA on social media and in phone calls, meetings and town halls with their congressional representatives. Of utmost concern were the proposed cuts to Medicaid — a crucial lifeline for the poor, elderly and people with disabilities — not only for medical treatments and prescription drugs, but also for a long list of other ancillary services such as in-home care, special education-related programs in public schools and durable medical equipment such as wheelchairs. Mental health advocates worried that therapy and treatments now covered by Medicaid would be curtailed, reduced or even eliminated in sparsely populated regions if Medicaid became a “block grant,” as proposed in the House-approved version of the health care bill.

Families who rely on the ACA were also spurred into action. A June 28 Time magazine article featured Ali Chandra, a former pediatric nurse in New Jersey who has a son, now 2, born with a rare health condition that included nine heart defects, two left lungs and five spleens. Before the 2016 campaign she wasn’t even registered to vote, but after the health care debate started in the House, she became an outspoken advocate to save one of the key elements of the ACA — a ban on lifetime limits for insurance payouts.

Before the ACA became law, many plans set limits on what they would spend for covered benefits during the entire time a person was enrolled in that plan, such as a $1 million maximum. Patients were required to pay the cost of all care exceeding those limits, which often forced them into bankruptcy. And to make her point that lifetime limits could be reached all too soon, Chandra tweeted a photo of her son’s medical bill from his most recent heart surgery at Boston Children’s Hospital with a total cost of close to $250,000. Her insurance carrier paid for all but $500 of that operation and recovery.

“We’re the ones who make sure they get their meds on time, we hold them down for painful procedures and comfort them afterward: The only thing we know how to do is fight,” Chandra told Time magazine. “We’ve been fighting since the moment we heard our kid’s diagnosis, since the moment they were born. This is just a regular day for us.”

Even rock star Rod Stewart, 72, got into the act, donating $30,000 to Trach Mommas of Louisiana, a Baton Rouge group supporting children with severe disabilities, to travel to Washington, D.C., in July to protest potential cuts to Medicaid. Stewart said that, as a father of eight, he felt compelled to help after seeing a CNN news story on the group’s need for funds to make the trip.

As a parent and advocate, I was glued to the ongoing media coverage and the daily, sometimes hourly, breaking news. Would the ban on pre-existing conditions stay? How deep would the Medicaid cuts go? Would the GOP-controlled Congress take away health insurance from the poorest and sickest among us to give the wealthy a tax break?

And even with McCain’s decisive vote, who knows what will happen next week or next month?

Disability advocates and their allies would be wise to remember what our tradition teaches us from Pirkei Avot 2:21 (Ethics of the Fathers): “It is not incumbent upon you to complete the work, but neither are you at liberty to desist from it.”

MICHELLE K. WOLF is a special needs parent activist and nonprofit professional. She is the founding executive director of the Jewish Los Angeles Special Needs Trust. Visit her Jews and Special Needs blog at


Hate crimes, bomb threats, anxiety and people with disabilities

As we all are aware, recently there has been a significant increase in hate crimes and bomb threats across the United States. Minorities, including people with disabilities, are especially at risk, not only for attacks and threats but also for the stress and anxiety that can result from seeing what is happening around us. People with multiple minority status (i.e. people of color + disability, LBGTQ + disability, Jewish or Muslim + disability, immigrant + disability) are particularly vulnerable.

Following more than 90 recent bomb threats and 140 separate recent incidents of anti-Semitism, the Anti-Defamation League (ADL) has issued a security advisory. It is asking people to review the Bomb Threat Guidance provided by the FBI and U.S. Department of Homeland Security; refer to the chapter on Explosive Threat Response Planning in ADL’s Security Manual Protecting Your Jewish Institution, which assists institutions in creating welcoming environments while keeping them safe; and to refer to ADL’s list of 18 Best Practices for Jewish Institutional Security. However, while the ADL’s excellent guidance can be helpful to people of all faiths, it does not cover issues that are vital for the 56 million Americans who have a disability.

When Jewish institutions do not have inclusion committees or policies, issues of life and death that impact people with disabilities can be seriously neglected. Fully 1 in 5 Americans have a disability, and the Jewish community, due to genetic disorders and advanced paternal ages, is disproportionately impacted by disabilities.

Can you imagine if an alarm goes off at a Jewish community center or day school and someone cannot hear it and there is not a plan in place? Or if someone who is blind or has low vision isn’t properly helped when the alarms are simply flashing lights? Or if people who need to take medications at regular intervals are evacuated but their medicines are left behind? Or what happens to a child with autism or adult with mental health issues if the staff is not properly trained and no system is in place?

Every Jewish institution needs to take disability inclusion seriously. Our nonprofit organization, RespectAbility, has compiled the free tools and resources listed below to help.

The 1 in 5 people in America who have a disability need proactive and systematic planning in order to ensure they have the same safety and security as everyone else. Key issues and steps include:

Anxiety, Addiction and Emotional Health: Even for people who do not have ongoing mental health issues and who are located nowhere near bomb threats or hate crimes, the content of social and other media can be extremely frightening. Emotional reactions can include feeling physically and mentally drained, having difficulty making decisions or staying focused on topics, becoming easily frustrated on a more frequent basis, arguing more with family and friends, feeling tired, sad, numb, lonely or worried, and experiencing changes in appetite or sleep patterns. Most of these reactions are temporary and will go away over time. It is important to try to accept whatever reactions you may have and to look for ways to take one step at a time and focus on taking care of your needs and those of your family. Keep a particularly close eye on children and people with addiction issues (including internet addiction) who may need extra means of support.

Some of the things that can significantly help your mental health include limiting your exposure to the sights and sounds of stress, especially on television and radio, in newspapers and on social media, as well as to eat a healthy diet, get ample sleep and stay personally connected to family and friends. Stay positive. Remind yourself of how you’ve successfully gotten through difficult times in the past. Reach out when you need support and help others when they need it.

Most major cities have a Jewish social services agency, which will help people of all faiths. Additionally, the Red Cross Disaster Distress Helpline is free and available around the clock for counseling or support. You can call 1-800-985-5990, text “TalkWithUs’ to 66746 or utilize

Another resource is the American Counseling Association. It has fact sheets you can download on mental health services, including post-traumatic stress disorder and crisis counseling. Moreover, if you are feeling suicidal, you should go immediately to the website

Create Your Evacuation Plan and Support System: Have you been in touch with your local police station and fire department? If not, do it now. A part of the services they provide is to keep track of the needs of residents with disabilities in times of threat or disaster. For example, if you use a wheelchair and live or work in a high-rise building, the fire department will come out for free to meet with you and create an individual plan for you in the case of a fire or other emergency.

If you have sensory, cognitive or other issues, it is vital for the police and fire department to know how to support you in a time of crisis. Hundreds of Americans with disabilities are killed by police each year because the police have not been trained to recognize and address mental health or other disability issues. The time to have those conversations and training is before a disaster strikes. Because this issue is so important, RespectAbility has conducted a free webinar, which you can find on our website: Special Conversation with Special Olympics about Violence, Police Training and People with Disabilities.

When it comes to evacuating people with disabilities, you must plan in advance. See the National Fire Protection Association’s terrific Emergency Evacuation Planning for People with Disabilities (June 2016) at

Have a “To Go” Kit Ready: If your building is evacuated, you will want to have several things handy. For example, you will want to have any medications you may need to take as well as your phone and charger, glasses, hearing aids and extra batteries if you use them, supplies for a service animal you may have and more. You also will want to let your loved ones, who might worry if they see a threat on the news, know you are OK. You can do that through phone, email or social media. There are terrific resources available through FEMA at

If you use a communication device, mobility aid or service animal, what will you do if these are not available? If you require life-sustaining equipment or treatment such as a dialysis machine, map out the location and availability of more than one facility. For every aspect of your daily routine, plan an alternative procedure. Make a plan, write it down and print it out. Keep a copy of your plan in your emergency supply kit and put a list of important information and contacts in your wallet.

Create a Personal Support Network: If you anticipate needing assistance, make a list of family, friends and others who will be part of your plan. Talk to these people now and ask them to be part of your support network. Share each aspect of your crisis/emergency plan with everyone in your group, including a friend or relative in another area who would not be impacted by the same emergency who can help if necessary.

If you have a cognitive or intellectual disability, or are deaf of blind, be sure to work with your employer and other key contacts to determine how to best notify you of an emergency and what instruction methods are easiest for you to follow. Always participate in exercises, training sessions and emergency drills offered by your employer or landlord.

Our nation is at its best when we are welcoming, respectful and inclusive of all. As many people are, or feel, at risk, we must show exceptional love and friendship to those around us.

Jennifer Laszlo Mizrahi, who has a disability and is the mother of a child with disabilities, is the president of, a nonprofit fighting stigmas and advancing opportunities for people with disabilities. She can be reached at

Special thanks to Elliot Harkavy for ideas and contacts that were used in this piece. 

Lessons from Germany and its disabled: Then and now

Los Angeles just hosted the 2015 Special Olympics. The Games featured competitions in 25 Olympic-type sports, including, aquatics, gymnastics, track and field, basketball, football (soccer) and many other summer sports. Some 6,500 athletes from 165 nations with intellectual disabilities from around the world participated.

According to organizers, the Games provide a world stage for ‘special’ athletes to demonstrate on the playing field their courage, determination and spirit of sportsmanship. “These Games will change the lives of people around the world who are mistreated and excluded because they’re ‘different,’” said Patrick McClenahan, President and Chief Executive Officer of LA2015, the Games Organizing Committee. 

On the eve of the Games, the leadership of Germany’s official delegation paid a visit to the Simon Wiesenthal Center and its Museum of Tolerance. The delegation was led by Ulla Schmidt, a Vice President of the German Bundestag, a member of parliament and numerous other German diplomats and leaders of NGOs.

Our meeting opened with a spirted discussion on the Iran nuclear deal and the rush for German business leaders to fly to Tehran. We agreed to (politely) disagree.

But there was no debate as to which person would make the greatest impact that day. Meet Verena Bentele, a blonde, blue eyed, thirty something, who vigorously shook my hand and gave me her card which read: The Federal Government Commissioner for Matters Related to Disabled Persons. I was informed that she is a 12-time paralympics Gold Medalist. You see, Ms. Bentele is blind.

Our discussion quickly shifted from today’s headlines to German history.

In 1939, before the Nazis decided on the genocidal ‘Final Solution’ to the Jewish Question, just weeks after the invasion of Poland that plunged the world into WWII, Hitler gave the order for large scale “mercy killings” (ie; murder) of Germany’s mentally and physically infirm. Initially Aktion T-4, was to be applied to newborns and the very young but soon it was expanded to gassing anyone who was diagnosed as suffering from such disorders as schizophrenia, epilepsy, retardation, encephalitis, and neurological conditions, as well as the criminally insane, and those institutionalized for more than five years.

Six killing centers were established including a well known psychiatric clinic. The euthanasia program was eventually headed by an SS man named Christian Wirth. 

At Brandenburg, a former prison was converted into a killing center where the first Nazi experimental gassings took place. The gas chambers were disguised as shower rooms, but were actually hermetically sealed chambers connected by pipes to cylinders of carbon monoxide. Patients were generally drugged before being led naked into the gas chamber. Each killing center included a crematorium where the bodies were taken for disposal. Families were then falsely told the cause of death was heart failure or pneumonia.

If this sounds like a precursor to Auschwitz Birkenau, Treblinka and Sobibor, it was. The use of these gas chambers served as mass murder training centers for the SS. They would later apply the technical knowledge and experience gained during the euthanasia program to pursue their program of exterminating the entire Jewish population of Europe. Christian Wirth, Franz Reichleitner, and Franz Stangl, were among these most notorious SS officers who ultimately ran Nazi death camps where millions of Jews were gassed and turned to ashes.

Unlike the mass murder of Jews, which elicited no discernable protests, the killing of nearly a quarter of a million disabled Germans, did. Led by a heroic public protest by a Catholic Bishop, Clemens von Galen, who labeled the Euthanasia program as “murder,” Hitler was actually forced to suspend Aktion T4 in late August 1941. This industrial-sized mass murder program was ended even as the genocide of the Jews would soon begin in earnest.

I told the German delegation that I had accompanied Simon Wiesenthal, the late Nazi hunter on many of his speeches in the US. Inevitably came this question: “were you surprised by how many Nazis there were?”

“No,” came the answer from a man who weighed only 90 pounds when US troops liberated him at Mauthausen Concentration Camp and who lost 89 members of his family during the Holocaust. “But I was bitterly disappointed by how few anti-Nazis there were!”

Each member of Germany’s Special Olympics team is a living testament of what people with disabilities can contribute to society, if only given a chance. Germany’s commitment to help the disabled find their place in the mainstream of society in 2015, is a measure of how far the nation has come since the Nazi era. We can only hope that all Germans who celebrate their athletes’ achievements will also lead the vocal opposition of anti-Nazis, every time the hateful Nazi ideology rears its genocidal head.

Rabbi Abraham Cooper is Associate Dean of the Simon Wiesenthal Center

Not your grandmother’s Alzheimer’s

Carol Kirsch relished her demanding position as a sales trainer for Kaiser Permanente in Oakland. But a couple of years ago, a good friend told Kirsch she just wasn’t performing up to par. She was missing deadlines. And she’d forget meetings, so co-workers would have to come fetch her.

When the colleague confronted her, Kirsch said, “I was devastated, but I knew it was true.”

After undergoing extensive testing at Stanford University Hospital, Kirsch was diagnosed with early stage Alzheimer’s disease. She was 57.

Kirsch is among the 5 percent to 10 percent of individuals with early onset Alzheimer’s, those who develop symptoms before the age of 65. And she is one of the growing number who are being diagnosed at an early stage of the disease.

“This is a sea change. More and more people are getting diagnosed early in the disease,” said Dr. Debra Cherry, executive vice president for the Alzheimer’s Association’s California Southland Chapter. “Our image of Alzheimer’s is of your grandmother, but this is not your grandmother’s Alzheimer’s. The association has a whole new population to embrace.”

A progressive disease that gradually impairs brain function, Alzheimer’s affects 4.5 million Americans and an estimated 450,000 Californians. One in 10 people older than 65 and half of those older than 85 have the disease. Last year, the Los Angeles County Department of Public Health reported that Alzheimer’s had, for the first time, emerged as one of the top 10 causes of death in the county.

According the National Institute on Aging, about 2.2 million people are in the early stages of the disease. This number is expected to grow as Americans live longer and diagnostic techniques continue to improve.

Last fall, the Southern California Alzheimer’s Association convened its first conference geared to those with early stage disease, in partnership with USC and the Alzheimer Disease Center at UCLA. Held at the Skirball Cultural Center, “Living Our Lives, Planning Our Futures” drew a sell-out capacity of nearly 350, and will serve as a springboard for future programming.

The event was organized by two Los Angeles-area residents, Richard Bozanich, 50, a former journalist, and Jay Smith, 69, a retired architect, who met at an early memory loss support group.

“The Alzheimer’s Association began as a grass-roots effort by caregivers, and most programs are geared toward caregivers or professionals,” Bozanich said. “We wanted to put on a conference by and for people with early memory loss. This was an opportunity for us to speak in our own voices, not to be spoken for.”

Smith added : “We wanted people to know: I’m not alone. There are others like me. There are places I can go and things I can do.”

Kirsch traveled with her husband from Oakland to attend the conference, and spoke on a panel about living and coping with memory loss. When she was initially diagnosed, she said, “For a long time, we cried. But my attitude now is to make the most of every day.”

She sings in a chorus, works with a writing coach and travels extensively.

“It’s good for others to see people like me who are still active and able to do the things I like to do,” Kirsch said. “When people who don’t have any contact with the disease hear ‘Alzheimer’s,’ I think they envision people who are drooling and who aren’t able to speak. One of the reasons I’m willing to put myself out there is to show that’s just not the case.”

Cherry, the Alzheimer’s Association’s vice president, said that progress of the disease varies for each person.

“We can’t say definitively what to expect,” she said. “A person with an Alzheimer’s diagnosis can live for two to 20 years, and can be in the early stages for a very varied length of time.”

Conference co-chair Bozanich said that medication has improved his life and enabled him to perform routine tasks without problems, although he uses a cane for balance. He and Smith both drive, attend meetings, and have traveled to Washington, D.C., to educate legislators about the disease. Both have been appointed to the national Alzheimer’s Association work group on early stage disease.

“Alzheimer’s used to be a silent epidemic,” said Peter Braun, Alzheimer’s Association Southland Chapter executive director. “Now the face of the disease is changing, and our services need to reflect a new paradigm. It’s going to require our national will to address this issue because Alzheimer’s is the epidemic of the 21st century.”

For the Alzheimer’s Association’s round-the-clock helpline, call (800) 272-3900.

Yes, I have Tay-Sachs Disease

Growing up, I always felt different from the other kids. I had difficulty speaking clearly, was always the slowest runner in my physical education class or last person picked on any sports team during school. Simple daily tasks had always seemed a bit more difficult for me. I had trouble opening jars and containers, terrible handwriting and was very clumsy. Spilling and dropping things at the dinner table was not unusual for me.

Teachers, friends and my parents didn’t know what attributed to these happenings. Even medical doctors were puzzled. For years, as a kid and teenager, my parents had me attending speech therapy every week. But they, too, found it a mystery why my speech was slurred and didn’t seem to improve through the years. I was lectured about not practicing enough, but it wasn’t true, I did try my best. The results were frustrating and I resolved to just accept things instead of growing angry or depressed. I got used to my speech and growing up being “different” than most kids — being the slowest runner, the kid who had trouble jumping, playing sports or being coordinated. To me, I was normal. Maybe I wasn’t the kid who was athletic, coordinated, or who had legible handwriting, but normal.

Despite my physical and speech problems, I always was a good student academically. I was good at writing, spelling and math computation. I had the best memory in my family, small details always stuck. But reading comprehension and math word problems were always more problematic. Nothing seemed to be mentally wrong. In fact, I completed college and studied abroad in Israel.

After my college years, my parents and I learned about a disease that was the cause of all my abnormalities. It was through a blood test my mother had me take after she suffered from a miscarriage. The cause of her miscarriage was Tay-Sachs disease, a fatal genetic disorder, most commonly occurring in children, that results in progressive destruction of the nervous system.

Tay-Sachs is caused by the absence of a vital enzyme, hexsaminidase-A (Hex A). Without Hex A, a fatty substance or lipid, called GM2 ganglioside, accumulates abnormally in cells, especially in the brain. This ongoing accumulation causes progressive damage to the cells.

In children, the destructive process begins in the fetus early in pregnancy. However, a baby with Tay-Sachs disease appears normal until about six months of age when its development slows. By about 2 years of age, most children experience recurrent seizures and diminishing mental function. The infant gradually regresses, and is eventually unable to crawl, turn over, sit or reach out. Eventually, the child becomes blind, cognitively impaired, paralyzed and non-responsive. By the time a child with Tay-Sachs is 3 or 4 years old, the nervous system is so badly affected that death usually results by age 5.

The blood test that was given to me revealed that I suffered from a rare form of Tay-Sachs disease called Late Onset Tay-Sachs (LOTS) disease. LOTS is a lysosomal storage disorder caused by low levels of the Hex-A enzyme in older children and adults whose symptoms include ataxia (lack of coordination), dysarthria (slurred speech) and muscle atrophy (muscle weakness). Muscle cramps, especially in the legs at night, and fasciculations (muscle twitching) are common. Not all symptoms are present in every individual affected by the disease; weakness of the muscles, however, is a symptom common to all. Many adults are relegated to living their lives in a wheelchair because of the progression of their leg muscles.

As I have grown up into an adult (into my early 30s) the effects of this disease have taken a greater toll on my body. My legs have grown progressively weaker, which has made daily tasks more difficult. I have trouble climbing stairs or curbs, getting up from chairs, keeping my balance and running or jogging. I have fallen several times in the last year, resulting in stitches, bruises and scrapes. Also, I have experienced cramping and stiffness in my arms and legs.

In addition, finding or keeping employment has been very difficult. I have lost employment because of my slurred speech and feel discriminated against each and every time I go into an interview. The disease has also not allowed me to be coordinated enough to be able to touch type, which is required for many jobs.

Currently, there is no treatment available for LOTS. I participated in a clinical drug trial, with about 30 people across the country, to try and stop the progression of symptoms for a year and a half. The results were minimal and the favorable affects of the drug were only temporary. In addition, the drug prompted terrible gastrointestinal problems as a side effect.

It has been a challenge to locate people who are affected with this disease, as many are misdiagnosed with other disorders that have similar symptoms. Tay-Sachs has always been known as infant disease and often mistaken by the medical community for diseases such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS, better known as Lou Gerhig’s Disease), Muscular Dystrophy or Parkinson’s. This may happen because sufferers tend to be at different levels or progressions of this disease.

My family has been very supportive of me and my struggles. My mother has recently started a nonprofit foundation to raise awareness for both research and education of the lay and medical communities. Our goal is to locate more people and families afflicted with this horrible disease and to make it a community effort to donate funds to find a cure or treatment. Hopefully, this will happen in the near future, preventing me from being relegated to a wheelchair.

I would like to spread the message of awareness to the community and thankfulness to my family. Tay-Sachs is not just an infant disease and not exclusively a Jewish disease. Testing is important and easily available.

A champagne brunch to raise funds and awareness will be held Sunday, Dec. 9, 11:30 a.m. at Braemar Country Club. For more information, call Bonnie Pastor at (818) 205-9644.

Club Kung Fu teaches special kids lots more than skill

It was Monday, Jan. 8, the day of the college football national championship game, which I was eager to watch, since it was my favorite sport. But the game also fell on the day of the opening of Club Kung Fu at The Friendship Circle. I was a volunteer in the program.

What should I do? Watch the big game or fulfill my commitment? I realized that there were more important things in life than football, and this was one of them.

Club Kung Fu is a martial arts program for Jewish special-needs children ages 9-15 that is designed to improve self-discipline, self-esteem and physical fitness. Right now, about eight boys meet weekly, but the program is expanding, thanks to a Cutting Edge grant from the Jewish Community Foundation of Los Angeles.

It all started when I met Rabbi Michy RavNoy, executive director of The Friendship Circle, an organization set up to pair volunteers with special-needs children. My family and I became very involved because my Uncle Brian (of blessed memory) had been a special-needs child who could have benefited from the program. Since volunteering has always been highly valued in my family and since I love sports, this program was a natural fit for me.

The students in the club have disabilities that aren’t visible from the outside but do exist, making their lives hard in many ways. They have autism, severe learning disabilities or behavioral challenges. Most of them lack social skills and are very lonely.

Even with these disabilities, they all have a good chance of functioning well in society with some additional assistance and support. This program gives these kids the opportunity to socialize and interact with others, while learning important self-defense skills.

Furthermore, with some Torah lessons from Rabbi Michy during class, their Jewish pride is strengthened. They are making friends while strengthening themselves both physically and emotionally. Since the participants are often targets of bullying, it is perfect because they also learn how to protect themselves.

The children are upbeat, learning the art of kung fu and having tons of fun doing it. Jack Huang, the leader, is not only a great teacher but a great guy. Although he is not Jewish, he seems to be attuned to Judaism.

He once said to Rabbi Michy, “I’m sure God says somewhere [in the Bible] that if you help yourself, God will help you.” He understands these kids and relates well to them. He can be serious and funny at the same time. He is well respected.

Along with two other volunteers, I act as a personal assistant to Huang. Together we help the participants master the moves that Huang teaches by helping them practice kicks, punches and blocks.

It is unfortunate that for most of these kids, this is the only time in the week they get out and interact with others, besides at school. They definitely take advantage of it. The impact of the program is huge, and I can clearly see the changes in them. At the beginning they were all very shy, but now they come into class noisy and ready to learn and have fun.

One student in particular, Michael, started off extremely shy. He would hardly interact with anyone and preferred to play video games at home all day. But as time went on, he started to come to each class with a huge smile on his face.

He has gone from being the quietest to the loudest and most enthusiastic. He is comfortable being around both the assistants and his other classmates and, in addition, is constantly cracking hilarious jokes.

One boy, Akiva, started out as a student but soon, instead of being assisted, started to assist others. I have watched him mature greatly. He now works so well with the other students that they have begun to look up to him, which has been great for his self-esteem. He is so committed to the class that one time, when his parents were going out of town, he insisted that they make sure that he could get a ride to Club Kung Fu.

This program means so much to me. I love seeing these kids grow up and improve their social skills, and I feel good about being a part of their development. It is amazing to watch them work hard and, with pride, receive their first belts. I, too, had the added satisfaction of earning my own belt.

I will always have opportunities to watch football, but watching these special-needs children integrate into society is far more satisfying.

Nathan Sobol is a 10th-grader at Hamilton High School Academy of Music.

Speak Up!

Tribe, a page by and for teens, appears the first issue of every month in The Jewish Journal. Ninth- to 12th-graders are invited to submit first-person columns, feature articles or news stories of up to 800 words. Deadline for the December issue is Nov. 15; deadline for the January issue is Dec. 15. Send submissions to

Botox Treatments Aid Stroke Survivors

Until recently, significant recovery from the physical and mental losses inflicted by a stroke was thought to be limited to a matter of months following injury to the brain, using conventional physical and occupational therapy. Now patients supplementing this with novel treatments, including an innovative use of Botox and a variation on old-fashioned plaster casts, are demonstrating that aggressive long-term therapy can increase the likelihood of complete recovery after a stroke.

One such patient is art curator Meg Perlman, who not too long ago spontaneously applauded at a jazz concert, clapping her hands together for the first time in 19 months. This was another small triumph in her major recovery from a stroke that had initially paralyzed her left side.

Caused by a clot or a ruptured blood vessel in the brain, stroke is the leading cause of severe disability today. In the United States alone there are now some 5.4 million stroke survivors, with nearly one in three suffering from permanent disabilities.

“When I went to medical school, the prevailing view was that you lose nerve cells and that’s it, you’re not going to get better. We know now that’s not true. The brain is plastic. It can remodel itself,” said Dr. Steven Flanagan, associate professor of rehabilitation medicine at New York’s Mount Sinai School of Medicine, and the neurophysiatrist treating Perlman.

One recent study showed that therapy could benefit patients who had suffered a stroke more than a decade earlier.

“It’s not something magical that happens in the brain and everyone will recover,” he warns, “but the brain has a greater capacity to recoup from injury than we thought in the past.”

Dr. Steven R. Levine, professor of neurology at Mount Sinai School of Medicine, admits that medicine “still doesn’t know the underlying mechanisms in different phases of stroke recovery.”

Such understanding would make it possible to individualize treatments for most effective results. On the horizon, experiments in mice and some early human trials show promise for enhancing stroke rehab with stem cells, growth hormone, amphetamines, even Viagra.

“Not everyone will improve,” Levine said, “but you never say never and you never take away hope from people.”

Anatomy of a Recovery

Stricken at the young age of 53, physically fit and intellectually active, Perlman has been a prime candidate for total recovery. She’s come a long way since her stroke in August 2003 while vacationing in the south of France. When she awoke on what should have been another day in paradise, she was semiparalyzed and confused. Her husband, author Doug Garr, immediately understood what had happened.

“Her left side was immobile. The left side of her face was frozen,” he recalled. “I recognized it as a stroke because I had seen my father have a stroke two weeks before he died.”

Perlman spent two weeks in intensive care at one of France’s leading teaching hospitals, then was transferred to Mount Sinai’s brain injury rehabilitation unit for another six weeks. There, days filled with physical and occupational therapy helped her reprogram her nervous system to regain control over posture and movement on her left side, and to relearn vital everyday tasks.

Better known for cosmetic enhancement, Botox injections immobilize key muscles in stricken arms or legs, allowing physical therapy and exercise to extend range of motion and flexibility. Effects wear off, so the Botox is reinjected every three months for a year or more. In Perlman’s case, it was the second dose that allowed her left hand to flex out enough to applaud at a concert, after successful attempts during therapy sessions at home.

With research in rehabilitative medicine generally underfunded, doctors don’t have data from large clinical trials to properly assess new treatments. Often patients proceed by trial-and-error, sampling therapies from the exotic to the high-tech; Perlman has had mixed results with acupuncture and with an electrical muscle stimulation device called a NeuroMove.

Then again, low-tech plaster of Paris has proven extremely effective. Called “serial casting,” a monthslong treatment involves stretching affected muscles with a series of plaster casts on an arm or leg for weeks at a time, followed by physical therapy to secure gains in flexibility. Perlman’s latest leg cast had just come off when she was able to stretch the toes on her left foot out and wear a shoe.

By all her therapists’ accounts, Perlman has shown exceptional resolve in fighting the fatigue, discomfort and frustration that are part of stroke recovery.

She has also had to battle the severe depression that a stroke leaves in its wake.

Flanagan observes that depression should be treated early and aggressively in stroke patients.

“We know that happy patients do better in rehab than sad patients,” he says. “We have to help them get the most out of their time in therapy.”

Fuller recovery from stroke takes a loyal, experienced team of therapists. With them, Perlman still keeps up a rigorous schedule of five physical therapy and two occupational therapy sessions a week at home.

“I expect to be 100 percent back,” she said. “I won’t stop until I am.”

She’s thankful for her “wonderful personal team,” including the friends and clients who rallied to her side after she was stricken.

Also appreciated: an occasional boost from strangers.

“I was walking to a restaurant with my cane. A short, Russian-looking man came up to me and said: ‘Did you have a stroke?’ I said ‘yes.’ He jumped up in the air and said: ‘So did I and look at me!'”

Steve Ditlea writes for the New York Daily News.

Groups Celebrate Seders With a Cause

At Jewish Family Service’s Freedom Seder, participants read
from a haggadah that was just a little bit different. Instead of reading of the
four sons, those at the Freedom Seder read about the “four community members.”

“The wise community member asks, ‘How can we, as
individuals, and a community, address domestic violence?'”

“The wicked community member asks, ‘Why don’t they just

The focus of the Freedom Seder was liberation from domestic
violence, and it was one of several seders in Los Angeles that celebrated not
the exodus from Egypt but liberations of different kinds.

As one of the most elaborate rituals in the Jewish
tradition, many groups have co-opted the seder’s ceremony and traditions to
express their own personal freedoms — be it from violence at the Freedom Seder
or bigotry at the Interfaith Alliance’s Breaking the Silence
Muslim-Jewish-Christian seder. At the Jewish Deaf Community Center’s (JDCC)
10th annual community seder at Temple Adat Ari El, participants celebrated
being able to observe the Jewish tradition in a manner that was accessible to

The Freedom Seder was held March 30 at a secret location. It
was closed to the public to protect the identity of its participants, most of
whom were women, both Jewish and not, who had been or were still in violent

The participants took the traditional haggadah and added
their own narratives to it, like the poem, “From Withered to Freedom,” by
Marlys Nunneri, whose husband physically and emotionally abused her for 40
years and in June of 1999 shot her point-blank in the chest. Nunneri, who
survived, wrote:


“My eyes were all red,

My body black and blue.

He would always blame me,

For things I didn’t do.”


“Whether these women are Jewish or non-Jewish, they are all
celebrating the same thing,” said Kitty Glass, JFS’ outreach coordinator, who
was careful to point out that Nunneri’s case was an extreme example of domestic
violence. “They are free from being hostages in their own homes, which is how
many of the women describe it.”

A few days earlier on March 28, Rabbi Steven Jacobs from
Congregation Kol Tivkah; Dr. Nazir Khaja, president of the Islamic Information
Service; the Rev. Ed Bacon, All Saints Church in Pasadena, and Rabbi Joshua
Levine Grater, Pasadena Jewish Temple Center, hosted Breaking the Silence: A
Passover Celebration Seeking Peace and Reconciliation Seder at Kol Tikvah for
members of their respective congregations.

Like the Freedom Seder, Breaking the Silence used a revised
haggadah, one that contained excerpts from the Torah, the Quran and the
Christian Bible. One-hundred-and-eighty participants of different faiths sat
together. The aim of the seder was to show that the message of Passover is one
of reconciliation and peace, and that religion does not have to be governed by
bigoted extremists.

“Tonight’s commemoration of the seder together,” wrote Khaja
in the haggadah, “gives us the unique opportunity to come together, not blinded
by emotions and passions that have kept us divided but truly as a people moving
forward towards liberation from cynicism, mistrust and doubt.”

At the Jewish Deaf Community Center’s seder held on the
second night of Passover, the celebration was on being able to enjoy the
ceremony without the inconvenience caused by disability. The JDCC’s seder was a
multimedia one, with a video service projected onto large screens. The service,
which was hosted by deaf Oscar-winning actress Marlee Matlin, featured
voiceover narration, captions and sign language.

“For years, deaf people have had to look at their haggadah
books and try to follow the leaders or sign-language interpreters,” it says on
JDCC’s Web site. “JDCC decided to develop a user-friendly seder, allowing us to
focus on the screen without having to worry about what page we are on.”

Sharon Ann Dror, president of JDCC, communicating with The
Journal through use of a teletext telephone, said that she developed the seder
because of a lack of religious services for deaf Jews.

“The Americans With Disabilities Act [ADA] provides equal
access for deaf people. For example, at the Mark Taper Forum, they need to show
captioned movies once a week. When my kid takes a class at the park, they need
to find the money for sign-language interpreters. But the Jewish community is
not affected by the ADA, because of the separation of church and state,” Dror

Dror said that she started her organization when she saw the
way her three deaf children were being denied religious education and religious
participation because of a lack of funds.

Religious organizations “complained that there was not
enough money to pay for interpreters, so I decided to solve my own problem and
start my own program,” she said.

For more information about the Family Violence Project, call
(818) 789-1293.

For information about Breaking the Silence, call (818)

For information about Jewish Deaf
Community Center, visit

Making Dyslexia Funny

T he Fonz was the ultimate of cool on "Happy Days," but in real life Henry Winkler struggled through school. Winkler and his parents — who called him stupid and lazy — didn’t know that he was dyslexic until he was diagnosed at age 30.

Winkler, 57, is now taking those frustrating childhood experiences and giving them a humorous twist in his new Hank Zipzer book series, which he hopes will raise the self-esteem of kids diagnosed with the misunderstood disorder.

Aimed at third- to sixth-grade readers, Hank Zipzer’s misadventures are part of a growing movement to reshape how people view dyslexia. Nonfiction works like Sally Shaywitz’s "Overcoming Dyslexia" and Time’s July 28 cover story tout groundbreaking research that shows the reading disability can be overcome.

"[My parents] were sure that if I stayed and concentrated long enough, I was going to win," Winkler said.

In the first two books, "Niagra Falls, or Does It?" and "I Got a ‘D’ in Salami," Zipzer knows something’s wrong, but doesn’t know he’s dyslexic. In the third book, "The Day of the Iguana" (due out Sept. 15), the world’s best underachiever is finally diagnosed.

Is Zipzer Jewish?

Winkler said that the character’s mother runs a New York deli that her father started, but he hasn’t given his main character a religion yet.

Winkler’s own Conservative parents expected him to become a bar mitzvah. However, his learning disability made it difficult for him to read English, let alone Hebrew.

"I had to learn my Torah portion phonetically," said Winkler, who also took to memorizing the prayers.

While the disorder makes it challenging for Winkler to read, he said he wouldn’t change his dyslexic past.

"It makes you a fighter," he said. "I don’t know that I would have gotten to where I am today [without it]."

Henry Winkler will read and sign his "Hank Zipzer" books at Barnes & Noble at The Grove on Aug. 9, 2 p.m.

From Best Boy to Best Man

Filmmaker Ira Wohl

Two decades ago, filmmaker Ira Wohl sat at the Passover table andthought about his cousin, Philly. For his first 50 years, thedevelopmentally disabled Philly had lived at home with his parents inQueens, never venturing into the world. Wohl now wondered how Phillywould survive once his ailing parents were gone.

Thus begins a family journey that Wohl chronicles in tworemarkable documentaries, the Academy Award-winning “Best Boy” (1979)and the newly released “Best Man,” tracing Philly’s move towardindependence, toward leaving home at last. “Best Man” will screen atLaemmle Theatres’ Cinema Judaica ’97: The Los Angeles Jewish FilmFestival this month.

In both, the story is told in a series of poignant vignettes,small scenes of everyday life that are somehow universal. As “BestBoy” opens, Philly appears slovenly, slump-shouldered while his mute,pained, elderly father shaves him in the tiny kitchen. Philly oncelived in an institution, we learn, until his parents found out aboutthe beatings. By midlife, he is happy, ebullient as he plays with hisfloppy doll or sings gibberish to “Fiddler on the Roof.”

His transformation is best described in glimpses: Philly joyouslybounding to the corner store for ice cream all by himself, orexcitedly hopping the bus for his first day of school, while hismother, Pearl, asks, “You don’t want to stay home with Mommy nomore?”

When father Max finally dies, it is Wohl who gently insists thatPhilly must move to a group home while Pearl is still alive tosupport him. Eight months after he moves in, she dies, we learn in atag line.

Yet Pearl lived long enough to hear the cheers from the viewers atscreenings; and “Best Boy” made Wohl a star. Suddenly, he washobnobbing with Richard Gere and Sidney Lumet, and the Hollywoodproducers had come calling.

Philly, on the occasion of his bar mitzvah.

It was a far cry from his humble beginnings in show business,which began on a “semi-slavery basis,” working for, of all people,Orson Welles in the 1960s. Wohl, then around 20, was told that hecould have the job if he smuggled several boxes of Cuban cigars intoSpain for the director. Welles was living in a grand house outsideMadrid, and, with the cigar mission accomplished, Wohl found himselfcutting film day and night in the basement. He was invited upstairsweekly, however, for a three-course lunch and Hollywood gossip.

For Wohl, the aftermath of “Best Boy” was not the classicHollywood happy ending. He grew frustrated and depressed with theless-than-serious-entertainment job offers, and when they stoppedcoming, around 1990, he went back to school to become a socialworker. Perhaps as catharsis, he chose to specialize in issuespertaining to the entertainment industry.

All the while, people would ask what had become of Philly. By June1996, Wohl, who had moved to Los Angeles, was ready to