Much hope despite many challenges

How do you overcome a life of disability and immobility with a smile and an internal light? You hold a belief in the goodness of people, a hope for the advancement of treatments, and a dream that a cure is within reach. You keep an open heart and an open mind because, otherwise, you can end up in a dark state of depression and stagnation.

I suffer from Late Onset Tay-Sachs (LOTS), a neuromuscular disease affecting the central nervous system. LOTS can be difficult to diagnose and is often mistaken for ALS, muscular dystrophy, multiple sclerosis or Parkinson’s disease.

I was diagnosed when I was about 21 years old. My parents are both carriers of the LOTS gene, and I inherited this newly recognized strain of what had always been thought of as a fatal, infant’s disease.

I am now 42 years old, yet my mobility and quality of life are comparable to that of a senior citizen.

How does it feel to live with Late Onset Tay-Sachs? In light of this being Jewish Disability Awareness and Inclusion Month, I’ll offer you a glimpse into my reality:

I use a walker but feel lucky that I am not limited to a wheelchair, as most people affected with LOTS are less mobile. Much of the time I am off-balance. I have fallen several times, resulting in broken toes, a broken ankle, scrapes and bruises. I have trouble getting up from chairs.

I need to use ACCESS, a special transportation system in California for the disabled, which has lifts or ramps on its vehicles to accommodate walkers or wheelchairs.

Having LOTS has made it extremely challenging to find employment. Every time I go into a job interview, I feel discriminated against and don’t feel qualified for the position because of my disability. I am well educated — I have a master’s degree in business — but LOTS affects my fine motor skills, making it difficult to do the typing necessary for most jobs. Bending down is also a problem. Imagine all the daily things at work requiring you to do something as menial as bending down to pick something up or getting something from a lower shelf.

The progression of my weakness has been harder to ignore in the past few years, but with exercise and will, I am trying to combat it. I attend physical and aquatic therapy four times a week, where I strive to maintain the strength I have left.

I have been in the hospital more than once for issues related to bipolar episodes, a symptom that affects about 40 percent of the people who suffer from LOTS.

I have suffered from a speech impediment since I was a young boy, which has made it difficult to give speeches or to be understood over the phone. Even the latest dictation machines that type for you don’t want to listen to me. I have taken speech therapy for years to no avail.

Housing is also a major issue. Any steps or curbs at a residence are problematic. If there is a second story, forget about it. I also must consider the proximity of restaurants, grocery stores, banks and pharmacies because of my need for transportation and assistance with chores. In addition, I need the bathroom to have a handrail on the wall that I can use to help me get off the toilet. 

While I am trying to live a “normal” life, being so abnormal in so many areas has been very disheartening. The simple things in life that people take for granted are a constant struggle. I wish I could get up and run over to a friend’s house when they have people over to watch a game without wondering how I will get there. Do they have steps at the house? I can’t have ACCESS take me everywhere, so do I call Uber and will it be handicap accessible? Where do I put my walker? I have difficulty bringing food or a gift for the host, so do I show up empty handed? Ugh! 

A big problem with my rare disease (about 1 in 63,000 people in the U.S. and 1 in 14,000 in Israel have LOTS) is that there is not a treatment or cure. But, there is always hope and a dream for one.

My family has started the nonprofit Late Onset Tay-Sachs Research and Education Foundation to raise funds and awareness that can help researchers find treatments and cures for this terrible disease. But the months of grueling work organizing fundraisers and paying money to update our foundation’s website ( have been a challenge.

Hope involves having the strength and passion to survive and live life to the fullest. Anyone who is sick or well should live by this mantra. Smiling is very important as well, as is being truly present in the moment, since no one knows their future.

Let your heart be open and generous. And strive to be better, more tolerant, more compassionate, more aware, more appreciative, more philanthropic — more alive!

ERIC PASTOR has been battling Late Onset Tay-Sachs for more than 20 years and vows to never give up.

What’s in a name? The false narrative of Kristallnacht

Two years ago, I was among a group of 24 young American Jews visiting a Protestant Church in Berlin to commemorate the anniversary of Kristallnacht. On that night, November 9, 1938, Nazi gangs destroyed thousands of synagogues and other Jewish-owned buildings across Germany, murdered dozens and sent hundreds more to concentration camps.

At the moving, hour-long ceremony I saw over 300 Christians, young and old, remembering and commemorating the systematic persecution of Jews in Europe that eventually resulted in the murder of six million.

I learned from some of the young Germans that hundreds of such services were happening across Germany, with at least 100,000 people participating. The director of Germany Close Up, the organization that cosponsored our visit with ACCESS: AJC’s next generation program, told me that that in her small hometown in northwest Germany, 400 residents gathered on every year on November 9 to read out loud the names of all the local Jews who perished during the Holocaust. It was, she said, a statement promising that such a horror should “never again” happen in Germany, or anywhere else.

And, we were reminded that the commonly-used term “Kristallnacht” – translated as “Night of the Broken Glass” — was actually a euphemism coined by the Nazis. Stressing the broken glass, with no hint of who broke it or what it signified, sanitized an event that was actually a pogrom, similar to those committed against the Jews in Russia, Romania and elsewhere earlier in the century. In fact—to add insult to injury—Jews were held financially liable for damage caused by the “broken glass.” Thus, Pogromnacht, night of the pogrom, is now used in Germany to more accurately describe what transpired 75 years ago.

On this landmark anniversary of that night, shouldn’t  we  ask, What is in a name? Has the way we have framed this crucial turning point in Nazi policy toward the Jews distorted the true nature of that fateful evening?

Perhaps it is time to change the terminology and call it Pogromnacht, so as to indicate what truly happened – a pogrom – and to serve as a reminder that we cannot allow racists, bigots and anti-Semites to euphemize and sanitize the language of history.

Other examples of this sanitization abound today. The Golden Dawn party in Greece, which rails against immigrants, Jews, and other minorities, denies its association with neo-Nazism, despite its fascist roots and use of Nazi symbolism, literature and anthems. Thankfully, the Greek government under Prime Minister Samaras has taken a stand, seeking to deracinate the party, and the Parliament voted to suspend state funding for political parties accused of criminal activity. The fact is that anti-Semitic crimes continue in Western democracies from Malmö, Sweden to Sydney, Australia. And, just this week the European Union released the results of a survey that found over 40 percent of Jews in Belgium, France, and Hungary are considering emigrating because of rising anti-Semitism.

The constant, collective reminder of the true nature of Nazism a commitment to track and prosecute hate speech, and a ban on Holocaust denial that creates a safer society for Jews remain necessary, even if anti-Semitism can never truly be eradicated. More countries should follow the example of Germany, in strengthening their laws and in calling key historical events by their right names—like Pogramnacht. And more leaders in the Jewish community should use the historically accurate term Pogramnacht going forward; two leaders that have been convinced are AJC’s David Harris and Rabbi Noam Marans. I hope many more follow the AJC’s lead.

Eli Lipmen is Communications & Advocacy Strategist for the Department of Regional Offices of AJC – the global Jewish advocacy organization.

Judea Pearl reaches out to young Jews

“I look at young Jewish boys as the army of the future, the elite force of the army of decency.”

With these strong words, Judea Pearl — activist, scholar and father of slain Wall Street Journal reporter Daniel Pearl — used an Oct. 17 lecture to a group of Millennials to emphasize how important it is that proud Jews be a force of good in the world.

“This is what I feel about them, and that is what I want them to feel about themselves,” Pearl said.

He appeared before a group of about 30 people as part of an event organized by the American Jewish Committee’s (AJC) regional chapter of ACCESS, the young professionals initiative of the global Jewish advocacy organization that trains professionals in their 20s and 30s to represent AJC on the local, national and international levels. 

It took place in the Encino home of philanthropists Richard and Marcia Volpert, and drew ACCESS members who work in law, medicine, government relations and other fields. It was open to the public, but offered at a discount to ACCESS members. 

The talk on young American Jewry could be considered commentary on the recent and much-publicized study by the Pew Research Center, “A Portrait of Jewish Americans.” Released last month, the report showed Jewish affiliation, particularly among young Jews, on the decline.

Without mentioning the study by name, Pearl, a UCLA professor emeritus and president of the Daniel Pearl Foundation, suggested that the way one achieves Jewish pride is by absorbing the history of the Jewish people and by placing Israel at the center of identity.

“By saying we are proud of the story, we are building the future together in the same shape, same mold,” he said during remarks that lasted about one hour and included a

Cole Ettman, one of the evening’s attendees, agreed that the history of the Jewish people — which spans thousands of years, from times living in disparate tribes to modern society with Jews acting as leaders in art, science, business and technology — can be an effective bait to grab the attention of the unaffiliated.

An ACCESS member who works as chief operating officer of the law firm Levine and Blit, Ettman used his soapbox during the Q-and-A to suggest that Pearl’s philosophy should be embraced by larger outreach efforts. While other organizations may promote Judaism by getting young Jews to wrap tefillin or keep Shabbat, identifying with the Jewish story is what’s essential, he suggested.

“You’ve got the right path, and it is enough,” Ettman said.

Pearl’s appearance followed a brief rendition of Bach’s “Sonata No. 1 in G Minor,” performed by 20-year-old violinist Stephen Tavani — the event doubled as one of the many concerts taking place worldwide this month as part of Daniel Pearl World Music Days. 

An initiative of the Daniel Pearl Foundation, World Music Days is an international network of live music performances during the month of Daniel Pearl’s birthday. This is the 12th consecutive year of concerts to honor Pearl and his love of music.

Founded by Daniel Pearl’s family and friends, the Daniel Pearl Foundation is a nonprofit that works for peace by supporting programs and fellowships around music, journalism and cross-cultural dialogue.

Access to Temple Mount restricted

Israeli police have restricted Muslim access to the Temple Mount over fears of more violence.

On Monday, police allowed only Muslim men above the age of 50 and all women access to the Temple Mount. No other visitors are being permitted, according to reports. It is not known when the restriction will be lifted.

An extra large police force is patrolling Jerusalem, especially the area around the Temple Mount. Police fear new violence will break out by both Arab and Jewish extremists as Passover begins, according to reports.

Violence broke out earlier this month at the Temple Mount and throughout the Old City of Jerusalem over the reopening of a synagogue in the Jewish Quarter. 

The army also imposed a closure on the West Bank until the end of the holiday.

Broadband: Not for kids only

“It doesn’t matter if my parents have broadband or not — they’re just as clueless about a computer with a fast connection to the Internet as a slow one.”

The words came from a musician in his 20s, a well-educated African American who works with artists in hip-hop culture. He was one of seven of us sharing a table in the ballroom of the Radisson Hotel across the street from USC, and we were among a couple hundred people who turned out the other weekend for a Los Angeles town hall meeting about the future of the Internet.

As I drove to the meeting, Barack Obama was on the radio explaining how he intended to spend the massive economic stimulus package he was preparing. I heard him say it would go to improving the American infrastructure in a way that would eclipse even the building of the transcontinental highway system during the Eisenhower years, and that he’d invest billions in roads, schools, sewer systems, mass transit, dams, electrical grids and other public utilities. I heard him say he’ll be asking Congress to create green jobs, whose workers will build windmills, install solar panels, develop alternative fuels
and retrofit homes with fuel-efficient heating and cooling systems.

But it was when he talked about broadband that he really got my attention. “It is unacceptable that the United States ranks 15th in the world in broadband adoption,” he said. “Here, in the country that invented the Internet, every child should have the chance to get online.” When it comes to infrastructure, the Information Superhighway isn’t just a metaphor any more.

What the president-elect didn’t say, though I learned it at the town hall meeting, was that America descended to our 15th-place standing during the Bush years, at the start of which we had been fourth. He might have added that broadband is way more expensive and way slower in the United States than in many other countries. The average broadband offering in Japan is 10 times faster than the average service available to U.S. consumers — at half the cost. People in countries like Finland, France, Korea, Sweden and Italy also pay less to get more.

Though Obama singled out children as particularly in need of access to the Internet, he could also have pointed to the economic, geographic and racial dimensions of the digital divide. While only 24 percent of American households earning more than $50,000 per year are not connected to the Internet, nearly three times that amount — 65 percent — of homes with less than $50,000 in annual income are not online. Nearly 60 percent of rural households don’t subscribe to broadband. Fifty-five percent of white households have broadband, compared to 36 percent of black and 35 percent of Latino households.

I’d be thrilled if every kid in the country had broadband. Accomplishing only that would at the same time put a nice dent in the economic, geographic and racial disparities in high-speed access to the Internet. What troubles me is that it could have minimal impact on the Americans who aren’t spring chickens — like the parents of my hip-hop tablemate who don’t go online.

Don’t get me wrong. I know people in their 90s who browse the Web and people in their 80s who are more adept at editing video online than I am. I know baby boomers who are on Facebook, much to their children’s chagrin. I know many people who are not young enough to have grown up using computers, but who nevertheless read political blogs obsessively, upload pictures to Flickr, watch television clips on YouTube and television programs on hulu, use Zillow to find out how much their houses are worth, get driving directions from Mapquest and Google the people their kids are dating.

But I suspect that the reason I know so many adults who depend on broadband is that most of the people I know are older and more educated and affluent and white than the majority of the country. At my table at the Internet for Everyone town hall, there was a librarian who described the stream of people who had no computer at home — who came to the library because they were told to apply for a job online but had no idea how to use a Web browser to do that and no e-mail address to put on their application. A Latina at my table, who works in Los Angeles’ MacArthur Park neighborhood, described parents who have no idea how to help their children use a computer to do homework. These Americans are as important to our economic and civic life as everyone else.

What’s the downside to focusing a national broadband build-out on schoolchildren? Sure, it’ll prepare them for the future. But it’s their parents who are being laid off and who need all the information they can get about job alternatives and emergency assistance. And it’s their parents and grandparents who need the Internet to participate in political movements, to pry information out of governments and hold officials accountable, to give voice to community concerns and give reach to minority views. Like it or not, broadband has become the spine of our economy and the glue of our society, and every American adult who can’t easily get online is as disenfranchised as every kid who doesn’t have access to broadband is disadvantaged.

If you’d like to be part of the conversation that began at the Radisson, you can do it via an online forum — the Digital Town Hall at

Task Force Reviews Access for Disabled

Childhood polio didn’t slow Jay Kruger. Although he couldn’t run, Kruger led a normal life as a teenager and into adulthood. Now, like other seniors experiencing post-polio syndrome, his strength is receding. To get around, three years ago he began relying on an electric wheelchair that he controls with a joystick.

While federal laws require public buildings to provide access for the handicapped, Kruger still encounters restaurants without ramps, public restrooms with hard-to-open doors that trap him inside and theater seating that is spitting distance from the screen. One quarter of the nation’s population cope with either physical or cognitive disabilities.

“People with two good legs, it doesn’t hit them,” said Kruger, who recently toured the recently opened Jewish Community Center (JCC) in Irvine to critique its accessibility for the handicapped.

Kruger had another motive, too. He is a member of a special Jewish Family Service (JFS) task force, which this fall will survey for the first time the needs and barriers of the physically and mentally disabled at synagogues, day schools and other Jewish institutions in Orange County.

It is hoped the Jewish Federation-funded survey will identify synagogues or programs that address needs of the disabled, which can be a model for others. The subject is a sensitive and complex one, as it will put a spotlight on community support for special services and conflicting attitudes over how to provide those services.

Findings initially will be compiled as a local Jewish resource guide, said Mel Roth, JFS executive director.

“When you find yourself with a child with special needs, it’s a maze out there,” said La Rhea Steindler, a JFS case manager and counselor, who is leading the 18-member task force, and is a mother of children with disabilities. “If it takes you three years to identify special needs, you’ve lost three precious years and have the emotional damage that goes with it.”

“If we shorten that process, we may prevent it,” she said.

The task force includes representatives from local Jewish groups, like the Jeremiah Society, as well as county service providers.

“It’s a very difficult job to get the community to recognize there are people among us who can’t benefit from society,” said Rose Lacher, who for 20 years has tried without success to establish a Jewish group home for mentally disabled adults in Orange County. She founded the Jeremiah Society, a social club of 30 members that draws participants from outside the county, reflecting the scarcity of such services.

“There are a lot of barriers,” Lacher said. “Some people just don’t want to hear about people who are different.”

“Using a public restroom has nothing to do with being Jewish,” said Joan Levine, who trains special education teachers at Cal State Fullerton. Levine, the author of a vocational guide for Orange County’s disabled, is dyslexic and has attention deficit disorder. She also is a JFS task force member.

Even so, she pointed out, observant Jews with disabilities face some particular hurdles. As an example, she said, turning off a hearing aid on Shabbat is considered an act of work, which is prohibited. Levine recalls having to seek permission from a religious court to use a sign language interpreter at a bat mitzvah where a deaf relative was to be called to the pulpit.

While day schools and supplemental religious schools willingly enroll special needs students, few are staffed with teachers expert in their needs. Some training is available locally through a little-known group, Special Needs Learning Partnership, formerly known as Jewish Education For All. The group provides highly regarded training in special-needs instruction for religious school teachers, hosts experts for talks with parents and teachers, and supplements teacher salaries.

“It’s the best-kept secret,” said Linda Shoham, the partnership director and also a member of the JFS task force. In the coming year, partnership-trained teachers will offer special-needs religious school classes at Fountain Valley’s Congregation B’nai Tzedek and Huntington Beach’s Congregation Adat Israel.

Yet even when such resources are available, many parents with special-needs children prefer mainstream classes rather than a specialized one, which can be stigmatizing.

During the JCC tour, Kruger was pleased to learn the fitness staff includes Angel Luna, a victim of cerebral palsy, who is a rehabilitation specialist. Luna’s expertise with stroke and heart-attack victims would serve the disabled, too, said Sean Eviston, the JCC athletic director.

“He fits a niche perfectly that is lacking in most commercial gyms,” Eviston said.

Kruger was equally impressed with a submersible chair, allowing the wheelchair-bound to be immersed in the swimming pool.

“I’ve never seen another one,” he said.
But entering a JCC restroom or the senior center was a considerable effort for Kruger from his wheelchair.

“There are people with walkers who will have more difficulty than I getting through all those doors,” said Kruger, none of which open automatically. For those reasons, Kruger gave the JCC a “B” grade. “I couldn’t give it an ‘A.'”

Mezuzah Mouse

The beginning of the new school year radically increases the frequency of beeps, clicks, buzzes, rings and stutter dials in my home. My stack of unreturned phone calls is beginning to teeter. Reflecting on these mixed blessings, I am reminded of an incident from way back in the pre-history of July.

I was in a dressing room at the mall when my cell phone rang. The caller was a staff member at my daughter’s camp. She sounded a little breathless.

“Notanemergency.” I recognized the standard school and camp greeting. “Emma is fine, but USA Today is doing an article about camp in tomorrow’s edition, and they want to use a picture of her. We’ll need your permission … right now.” I had to think fast. In my underwear.

For two seconds I wondered how USA Today got this picture of Emma. Then I realized it was easy. Emma’s camp, as well as 600 others throughout the country, subscribes to a service that posts and sells pictures of the campers on the Web (updated daily and accessible to parents only). They also invite parents to send daily e-mail to the campers and to “click here” to send a care package of little gifts. Young Emma could now be launched from her tent, by a lake, in the Sierras, to a million readers in one click of a mouse. I appreciated the allure of having an all-access pass to Emma’s life, but I was not prepared for everyone else to have one too.

Our electronically assisted lives are undeniably bountiful. I cherish my ability to e-mail my brother-in-law in Indianapolis, to access a bibliography on pastoral counseling, to peruse the Web sites of far-flung vacation spots. The late Lubovitcher Rabbi, Menachem Mendel Schneerson, said, “Do not fear technology, it will knit the world together.” Some of this connectedness benefits family life directly. In our sprawling city, I appreciate my cell phone link to the babysitter, to older children home alone and teenagers on the town. But does my child benefit from a daily e-mail or a care package when she’s only gone for two weeks? If I don’t send her one but all the other parents do, will she feel neglected? How much access is too much?

A few weeks earlier, I had the pleasure of lecturing at the Whizin Institute for Family Education at the University of Judaism. Shellie Dickstein, Jewish family educator extraordinaire, was in town from New York, facilitating a session for early childhood specialists. She provided the participants with an article by psychologist David Elkind, best known as the author of “The Hurried Child.” Elkind writes about the shift from the protected and protective nuclear family to today’s “permeable” family. He explains that boundaries between home and the outside world, between public and private, between family and work have become more open and flexible. The Internet, cell phones and faxes fling the doors of our homes open wide. Dickstein suggested, only half-joking, that parents consider putting a mezuzah on their computers. “These are our doorposts, our portals. This is where influences for evil or good stream into our lives.”

All this connectedness is of value to ourfamilies only if we can tame it and teach our children to do the same. The e-portals that make our lives permeable are powerful tools, but we still have to do the thinking. Too much accessibility is like leaving the doors and windows open all the time. They can’t shut themselves; we have to do it. When we allow ourselves to become addicted to a nightly e-fix of camp photos; when we send our kids daily e-mail and care packages, we have become too connected. We may insulate them a bit from homesickness and satisfy our urge to make sure they’re happy, but it comes at a price. For children, camp is supposed to be a place where appearances don’t matter, where the outside world can’t touch you, and where parents can’t protect or pry. Parents whose children go away to camp ought to be able to get a real break from them, as well as some practice in letting go. E-access 24 hours a day diminishes the experience on both sides.

I gave USA Today permission to print Emma’s photo, “if you don’t use her name, and she’s not in a bathing suit.” I then checked their Web site every day, searching for my sporting, windswept cover girl. Three weeks later they ran the article without the photo. Part of me was disappointed, another part relieved. For the time being, this window into Emma’s life was still reserved for my eyes only. As the New Year approaches, we have the opportunity to take time to reflect on just how permeable we want our lives to be. I’m considering a mezuzah for my mouse — and maybe one for my cell phone, too.