“Presumed competency” — six syllables that represent a revolution. With children, it can mean giving space for growth. In the disabled community it means allowing even the most mentally or physically disabled to try on their own.
Historically, however, self-determination for those with disabilities has been a privilege rather than a right. This is due to change.
Ari Ne’eman is the founder and head of an organization run for and by the autistic called Autistic Self Advocacy Network (ASAN). He explains that even supported decision-making for a disabled individual (think: getting advice before purchasing a house), versus having decisions made for him, means tremendously different outcomes for everyone involved.
There is power in language. During the era of massive institutions in the United States, which lasted well into the 1950s, mentally disabled people, including autistic like Ne’eman himself, were called “feeble-minded,” “imbecilic,” “low-grade” or “high-grade morons.” Parents who wanted to raise their disabled children at home were called “pathological” by health care professionals.
For Ne’eman, who was diagnosed at age 12 with Asperger’s Syndrome, the word “autism” meant power, identity, and community.
“It is valuable to have a word… it gives a framework to understand yourself and the world,” Ne’eman explains during an interview in The Times of Israel’s Jerusalem office. The 27-year-old is briefly in the country to visit his fiancee, a rabbinical student at the Jewish Theological Seminary who is completing her Israel year of study.
Back when Ne’eman’s mother Rina, a professional translator and a blogger at The Times of Israel, sat him on a park bench and told him he was autistic, learning what he had didn’t do much for Ne’eman. The word began to gain meaning only after he met others and started to have the sense of belonging he’d been denied by the Jewish community.
The disabled world welcomes Jews much more than the Jewish world welcomes the disabled
Childhood was not easy for Ne’eman: he’d had to leave his Solomon Schechter day school, been expelled from Camp Ramah.
“I was not viewed as someone desirable,” he says.
The fact is, says Ne’eman, that the disabled world welcomes Jews much more than the Jewish world welcomes the disabled.
That may be changing, however, with the help of the Ruderman Family Foundation, which bestowed Ne’eman its $100,000 the Morton E. Ruderman Award in Inclusion this week for his work in giving a voice to the autistic community.
The Ruderman foundation is tasked with pushing for the inclusion and understanding of all people towards the creation of a “fair and flourishing community.” Foundation head Jay Ruderman says the prize, established in his father’s memory, is for those who have made an impact on promoting this inclusion.
“Even though he is young, Ari has that impact,” says Ruderman in a phone conversation from Boston. He says that at a recent Washington, DC, meeting of 25 leading national organizations in the field of the disabled, including members of the Obama administration, Ari, who serves on the president’s national council on disabilities, was hailed as one of the leading self-advocates.
“His message is a powerful one. Most work in the nonprofit sector is focused on curing autism, ‘For our children, our future children.’ Ari’s position is we’re happy how we are, we deserve our civil rights just like everyone else in society, we don’t want to be cured,” says Ruderman.
“Ari has established himself in DC as someone to be reckoned with. He sits in rooms with people in their 60s and 70s and he’s given every bit of respect that everyone in the room gets,” says Ruderman.
Ne’eman says the Jewish community, which has a “moral obligation” to push for inclusion, also has a strategic interest in engagement with the disabled.
There are some signs that the Jewish community is beginning to take heed: alongside the Ruderman foundations efforts, including teaming up recently with Chabad, there is an increase in disability inclusion at camps. Additionally, next month has been labeled Jewish Disabilities Awareness Month.
‘Ari’s position is we’re happy how we are, we deserve our civil rights just like everyone else in society, we don’t want to be cured’
As a deeply committed Jew, however, Ne’eman worries for his future children, whom he expects to be autistic based on genetic research. He fears they won’t be able to go to a Jewish school, or will be forced to leave as he was. His goal is “to make sure they have an easier time, in the world at large, and in the Jewish community.”
ASAN is based on seeking recognition in society that the autistic have the same wants and dreams as society at large.
“We are waiting for people to realize that we are your neighbors, classmates, your coworkers, and we’re part of society,” says Ne’eman.
As families are increasingly raising autistic children at home within the community and moving away from the institution/group home model, NIMBY syndrome (not in my back yard) must dissipate. There are many autistic who are “passing” every day in all walks of life, says Ne’eman.
“It’s like learning the syntax and norms of a foreign language… But it’s tiring, challenging and not something we should have to do all the time. We shouldn’t be forced into it,” he says. Instead, there should be more acceptance for “autistic behaviors,” such as hand-flapping or rocking, that are non-abusive to both the individual and his surroundings.
There is increasing awareness in legislation, such as the 2010 executive order from President Barack Obama, which gave the highest level of disabilities cover, says Ne’eman, that “people may require different things for a level playing field.”
He likens this to an Orthodox Jew whose need for kosher food is respected because it is a religious consideration.
Autism, says Ne’eman, is no recent epidemic. In fact, according to his research, it has kept at a steady 1-3% of the worldwide population. What varies from country to country are the diagnostic methods and the age and gender of those tested.
Stereotypically, the candidate for an autism diagnosis is an eight-year-old Caucasian male. Ne’eman and his organization are trying to bust these myths so that girls and minorities will have access to the same services and opportunities given to white boys.
Once diagnosed, children are afforded the protection of US federal laws and the right to a public school education in the least restrictive environment possible, which may translate into the use of an aide, an occasional small group setting within the school, or a need to communicate through multiple modalities.
Technological advances have opened a whole new horizon for even the most severely autistic
Technological advances have opened a whole new horizon for even the most severely autistic in allowing for communication with their environments and online interactions.
Ne’eman reminds that even a meltdown is self-advocacy and should be recognized as such, but for those struggling with speech, new technology can serve as a starting point for education.
As prices come down on tablets and mobile computers, they give a “gateway into the broader world,” says Ne’eman, in which the disabled are given the tools to understand and manage as much as possible for themselves.
To manage, while living lives of presumed competency.