"The goal is not inclusion. What I’m looking for is belonging. There’s a huge difference between being included and belonging,” said Jacki Edry. A Netanya-based author, educator, and advocate for those with special needs, she is now creating a new program – Side by Side: Building Community, Together – to help fulfill the social needs of young adults with disabilities.
“Belonging means that you’re part of the community. Everybody looks after you, and you look out for everybody else, because communities take care of each other,” she added.
Edry is a mother of five, one of whom, a 29-year-old son, is on the autism spectrum. Through her son’s experiences, she realized that there was a desperate need in Israel for a program to help those with disabilities find a true sense of belonging.
People are generally familiar with autistic savants who serve in the army’s elite 8200 unit, as well as those on the other extreme of the spectrum, who can barely communicate and require 24/7 supervision. However, many of those with autism generally do not fall into these extremes, she said, something that is true of people with all kinds of disabilities.
“There are lots of people in the middle. Most people are not at one end or the other. Most people are somewhere in between,” she said.
Edry's son has few opportunities to interact with his peers
While the Welfare and Social Affairs Ministry does not release detailed statistics on the functioning levels of people with disabilities, Edry said there are clearly thousands who are not served by any existing programs or frameworks.
After years in an educational system that provides them with a daily schedule, activities, social contact, and professional support, disabled people “age out” of the school system at age 21. They can suddenly find themselves with far fewer opportunities to meet people, participate in their communities, and build meaningful adult lives.
Edry has seen this happen with her son, who works part-time at a local branch of the Aroma café chain, thanks to Edry’s persistence and a kind manager who was willing to invest time showing her son the ropes. But outside of his working hours, her son spends most of his time at home and has few opportunities to interact with his peers. She searched hard, but didn’t find any programs that could help him.
She noted that Temple Grandin, a well-known autistic professor and activist in the US, wrote that she made friends when she was younger because she had opportunities to do interesting things with others.
“You build relationships by doing interesting things together – through a common interest. So, this program developed along those lines. One goal is to have people with disabilities become much more integrated into the community. But I didn’t want it to be a traditional ‘mentoring’ situation,” she noted.
“I therefore created a model where all participants would have the opportunity to do something meaningful together, through volunteering in the community and doing good for others.”
'They have fun together...they do wonderful things'
SHE IS DEVELOPING the Side by Side program in partnership with Et La’asot (A time to Act), an Israeli nonprofit organization that works with children and young people with disabilities and their families. Founded in 2006, Et La’asot runs programs across the country, including recreational activities, camps and vacations, weekend getaways, play centers, mentoring, family assistance, and volunteer training.
“Et La’asot’s existing model works with high school students,” said Edry. “High school students have volunteer requirements, and they work with children with disabilities. They have fun together. They travel around the country; they have play centers, one-on-one activities, and all kinds of programs. They do wonderful things.
“When I approached Et La’asot and proposed creating a similar model for older people, they were happy to partner with me to bring this project to fruition.”
Plans include volunteering with elderly people, assisting with food distribution, working in agriculture and animal care, and taking part in other community projects. The groups will also participate in trips, social activities, and special events.
But there was a problem. “People in their 20s and 30s often don’t have time simply to volunteer. The people I’m looking for are students who need to work to support themselves and pay tuition. So, I thought we could combine those things.
“The students will receive a grant for participating, and we can bring disabled and non-disabled young adults together to do enjoyable and meaningful things. If they go out and volunteer together in the community, they will be helping somebody else. They will be doing something useful together, something meaningful.”
Side by Side does not receive government funding. “A few very generous people have given us grants to get started. One donor has given $10,000 and is willing to match another $10,000, so donations made now, up to that amount, will be matched.”
The pilot program would start in Netanya, but Edry emphasized that it should become national.
Edry devoted herself to finding treatment and education after son's autism diagnosis
THE MORE you know about Edry, the more inspiring it is that she has taken on this ambitious project with the potential to help so many. Born and raised in a secular family in Great Neck, Long Island, she moved to Israel in her 20s, married a man from a more religiously observant background, and became interested in Judaism, gradually becoming observant herself. After one of her sons was diagnosed with autism, she devoted herself to finding treatment and education that would be most helpful to him, and he flourished.
About 13 years ago, when her son was a teen, she was diagnosed with a large tumor on her brainstem. Fortunately, it was benign, but she required complicated surgery that left her with numerous disabilities, including difficulties with sensory processing, similar to the types of neurodivergence typical of autistic individuals. These disabilities present her with many daily challenges. But her commitment to helping her son realize his potential has never wavered, and she is focused on reaching others in his situation.
In addition to taking the program national, she envisions Side by Side eventually adding a professional component.
“If my son had an apprenticeship – if professionals were willing to teach him one-on-one – he could learn many different types of jobs very well. I think most people with skills similar to his, if given that opportunity, could learn.
“There is a school in Colorado called TACT, which prepares people for apprenticeships and properly paying jobs – electricians, auto mechanics, plumbers, all different kinds of trades. The program has a waiting list for graduates. If we had something like that in Israel, it would be incredible.”
But in its initial phase, Side by Side will concentrate on creating social bonds.
“It is an opportunity for students to meet somebody different from themselves and realize that somebody who may need support can contribute to the community as well.”
The most important part of the program, she said, is that “by doing something meaningful together, hopefully real friendships will develop.”■
For more information, visit the Et La’asot website at www.etlaasot.org.il/BuildingCommunity