April 2, 2020

I Have Cerebral Palsy. Here’s Why I Went to Speak to the Candidates in Des Moines.

Ila Eckhoff seen here with Sen. Elizabeth Warren in Des Moines, Iowa. (Courtesy of Respectability)

I have cerebral palsy. I also am a managing director at a large asset manager in New York and a Jewish mother. Part of my Jewish values of tikkun olam is to try to use the skills and success I have achieved to help the other 60 million Americans who live with a physical, sensory, cognitive, mental or other disability.

As someone with cerebral palsy, I walk with a cane for balance support. I try to avoid venturing out in the snow as I don’t want to make any “unscheduled landings.” But I went to Iowa in the snow because I wanted to speak with political candidates — and I did. Maybe it’s part of my own natural chutzpah.

I recently returned from Des Moines, where I went with a team from the nonprofit group RespectAbility — started by three Jews. I’m on its board, and we fight stigmas against and advance opportunities for people with disabilities. We do a lot on inclusion of Jews with disabilities in the Jewish community, but we also reach out to advance social justice. Our online publication, The RespectAbility Report, is at the intersection of politics and disability. Twenty percent of the U.S. population has a disability, and 22 million of those individuals are of working age (18-64). Seventy percent of those with a disability who are of working age are underemployed or unemployed. However, 70% want to work.

Over the course of four days, we attended events for presidential candidates Bernie Sanders, Elizabeth Warren, Amy Klobuchar, Pete Buttigieg, Joe Biden and Andrew Yang. Where possible, we asked questions and met with the candidates, staff and policy advisers.

Prior to our arrival in Iowa, we sent a nonpartisan questionnaire to all candidates to collect their views. We just released our disability voter guide. We went to each candidate’s field office to deliver the questionnaire in person, meet staff members and answer any questions. As of this writing, we have received complete written responses from Buttigieg, Klobuchar, Sanders, Warren and Yang.

We focused our engagement on “employment first,” asking each candidate to recognize that disability impacts 6 million schoolchildren and 22 million working-age adults. Not only are we the largest minority in the United States, we are the group most people eventually will join if they live long enough. We need to elevate the discussion to show the value people with disabilities bring to the workforce and the community. We asked the candidates to be more vocal on the campaign trail discussing disability issues and ensuring that if elected, his or her administration will include those with disabilities, to actively create change and increase employment opportunities.

With Andrew Yang

True, the social safety net and health care are very important. However, most people with disabilities don’t just want to cash a government check. Millions want to work and be independent. Yet, the current system discourages employment. For example, for those who receive disability benefits to be able to attend school, those benefits end when they get a job. That sounds good in theory, but if someone is quadriplegic and needs someone to dress and feed them, they can’t afford to give up government benefits for school or a low-paying job. It is that same assistance — hand up, not handout — that would enable them to work and choose for themselves. It is better for the individual and society at large if those who are able to work pay taxes, raise families and have the choice to live independently and fulfill their dreams.

There is significant evidence that diverse teams, including those with disabled individuals, make better decisions and create better economic outcomes for the companies that employ them. This is true in synagogues, corporations, nonprofits and beyond. The discussion needs to be about what we can do. Everyone deserves the right to have a job, be independent and choose their purpose.

Four years ago, most candidates did not have accessible websites or events. That was also true at the start of this campaign. However, because of the advocacy of our group and others, people like me can go to an event and know there will be a place where we can sit and participate, just like anyone else.

Civic engagement is a core Jewish value, and it is a part of how we have survived for centuries as a people. It’s how we protect ourselves and everyone around us. It is vital for Jews — with and without disabilities — to engage in 2020 and beyond.

With Amy Klobuchar

Ila Eckhoff is a Jewish lay leader for RespectAbility.

Disabled Bodybuilder ‘Will Figure Out a Way to Do It’

Photo courtesy of Sam Mograbi.

Sam Mograbi’s typical week consists of planks, swimming, crunches, pushups, contact dancing, Brazilian jiujitsu and weightlifting. He focuses on bulking up his legs and back so that he can compete in local bodybuilding competitions and become a physical trainer one day.

Sam, 26, works out constantly, even though he cannot walk or control his body movements. He has cerebral palsy, which was a result of a lack of oxygen during birth, and is in a wheelchair much of the time.

The Newport Beach resident has been training for 14 years and today is solidifying his reputation as a bodybuilder with cerebral palsy. In September 2017, a video of Sam striking poses at a competition was uploaded to Facebook and has more than 9 million views, 2,000 shares and comments from people all over the world, including many who were moved to tears and inspired by the video.

“Aside from his training appointments, he’s an animal at home,” said Linda Mograbi, Sam’s mother. “He does his own routine. He dedicates all his time to his training.”

Sam started exercising in New York, where he’s from, with a trainer who immediately recognized his motivation. Linda said that, back then, Sam was physically very different. “We had to strap him into the equipment with seat belts so he wouldn’t fall out,” she said. “His balance wasn’t there.”

Though it was difficult in the beginning, Sam didn’t give up. “His trainer would really push him,” Linda said. “He didn’t give up. His trainer was in his face and was amazed because every time he would push Sam to do more, Sam would want to keep going.”

“Aside from his training appointments, he’s an animal at home.” — Linda Mograbi

Sam, along with Linda, his father Robert (Bob) and his brothers Joseph and Matthew, moved to Newport Beach in 2009, when Sam was 17. Bob founded the company Matt’s Munchies, which makes fruit leather snacks found in local and nationwide stores such as Whole Foods, Glatt Mart, Sprouts, Erewhon and Gelson’s

For five years, Sam worked at the Matt’s Munchies factory in Santa Ana but quit in July 2017 to focus on his physical activities. To ensure he can get to and from his workouts, he has help from Dennis Gomes, who has been his personal assistant for seven years. Gomes’ brother Marvin Ramirez is his trainer. Gomes records Sam’s workouts and then sends them to a family member to post on social media.

Eventually, along with training clients of his own, Sam would like to become a model for Under Armour, which he wears, and post workout routines on YouTube, Linda said. Already, he’s invented a walker for people with disabilities that’s patented, according to Gomes. “It straps around Sam’s chest and his stomach area,” he said. “He was able to work at the factory and stand for eight hours a day on that.”

Because Sam has come so far over the past 14 years, Linda said that his goal is to be able to walk. “It’s not typical to start walking at this stage in life, but he keeps progressing.”

One thing is for sure: Sam is giving hope to everyone around him, and even millions of people around the world who he’s never even met.

“I complain about something and Sam, who has a disability, doesn’t let anything hold him back,” Gomes said. “If you tell him he can’t do it, he will figure out a way to do it. He is very inspiring.”

Finding their place [VIDEO]

Lauren Levine is settling in with a group of friends apartment to watch “American Idol,” when a look of panic comes over her face. She rummages around, finds her keys and darts out.

“I left the hair thing on,” she says when she returns, breathless, from her own apartment downstairs. “I was straightening Jasmine’s hair before we came up here, and I forgot to turn it off. Wow. That was close.”

Levine has wide blue eyes accentuated with sparkly eye shadow, and her voice is spiced with a sense of interested wonder. She wants to be a cosmetologist — she’s taken some classes — but for now she is just happy to be living on her own, and working the front desk at a gym in Century City.

Levine’s developmental delays are less obvious than those of her roommate, Jasmine Banayan, who has Down syndrome. Banayan is gregarious and warm and asserts herself as something of a leader among the dozen or so friends who live in a cluster of apartments in Westwood.

The group gets together every night to hang out at one or another of their homes, or to go out to dinner, and, on Friday nights, the five Jewish members of the group are regulars at Shabbat dinner and services at nearby UCLA Hillel.

All are participants in a parent-led experiment in independent living for adults with developmental or cognitive disabilities.

Today’s 20-somethings with disabilities have grown up at the vanguard of a successful mainstreaming model, and they and their parents now are determined to continue to break the mold, to live adult lives with high expectations, in keeping with the ideal that not only is there a place for them within mainstream society, but that they can contribute in meaningful and enriching ways.

While the impetus for change exists, needed funds won’t necessarily follow. Government budget cuts are endangering existing programs, and start-up costs for new programs can be prohibitive.

Story continues after the video.