For Arlene Kanter the fight for equal rights and social recognition for people with disabilities is a universal battle.
Here this year on a Fulbright scholarship to help Tel Aviv University establish the country’s first academic program in disability studies, the Syracuse University College of Law professor says that what has struck her most since arriving in August is how myths and misconceptions about people with disabilities transcend local cultural and religious boundaries.
Fighting for the rights of those with disabilities, she says, could actually be a uniting factor in a region separated by war and politics.
“What has been most interesting for me is hearing the stories of people from across this region and realizing that they are the same kinds of stories regardless of whether the people telling them are Jewish Israelis, local Beduin, Palestinian refugees in Jordan or social rights activists in Turkey,” explains Kanter, as we sit together in her rented Jerusalem apartment and she begins to recount her adventures in Egypt, Jordan, Turkey, India and even Vietnam, researching disability laws, material that will form the basis of a future book.
“All the people I have interviewed in the region share very similar experiences based on cultural norms, and even though Israel perceives itself as a Western country, it still has its roots in the Middle East,” she says.
Kanter begins by sharing a recent experience of an interaction in Jerusalem with a Jewish woman of Iraqi origin and a Muslim woman she met at a conference in Dubai.
“Not long ago, unrelated to the disability work I am doing, I went to hear a talk on the mikve [ritual bath] from a feminist perspective,” she recounts. “I started talking to the woman sitting next to me and when I mentioned to her what I did, she told me that even though she was a secular Jewish Israeli, not at all religious, she used to go to the mikve every month because her mother told her that if she didn’t she would end up having a child with a disability.
“A few days later I attended a conference in Dubai. I was in the women’s rest room and began talking to one of the women who was covered in a long black burka. She too told me that she would say a special prayer each month because her mother told her that if she didn’t she would end up having a child with a disability.
“These traditions are horrible because they portray having a child with a disability as disastrous, which is not the case for so many families. But what struck me most is that within days I was hearing the same story, the same superstitions from two women who are usually perceived to be worlds apart politically and religiously. Somehow the same fears and attitudes about disability have seeped into both societies. I simply have not heard such stories in the US and in other Western countries that I have visited. Although prejudice in these countries exists, it is expressed differently.”
Stories of the common perceptions and misconceptions toward people with disabilities extend beyond those shared by Muslims and Jews, says Kanter, stating emphatically that the battle for equal rights and social recognition is the same battle the world over.
To highlight this, Kanter, who directs the College of Law’s Disability Law and Policy Program and is codirector of the Center on Human Policy, Law and Disability Studies at Syracuse, points to the creation in 2006 of the UN’s Convention on the Rights of People with Disabilities, which has been signed by 144 countries, including Israel, and ratified by 80.
“The new UN convention is significant not only for what it says but because of who wrote it. People with disabilities from all over the world came to the United Nations to participate in the process. Just that scene of people with disabilities from different cultures coming together in the halls of the UN with the same goals was amazing,” says Kanter, who was heavily involved in drafting the document. “I saw representatives from countries that are considered enemies – from Israel, Syria and Lebanon – literally working together on it.
“All these people have now gone back to their countries and are working to put this convention into practice and to improve the lives of people with disabilities.
“There are many types of disabilities and they might be spread out across the world – an elderly person who is blind from Scandinavia may have nothing in common with a teenager with Down’s syndrome from sub-Saharan Africa, but there is one thing that all people with disabilities from all nationalities share and that is a history of discrimination,” emphasizes Kanter.
Whatever their disability, continues Kanter, people with disabilities are viewed by their respective societies in very much the same way. That is why she believes so strongly in developing legal norms and creating international standards regarding acceptable human rights protections for people with disabilities.
“These laws can motivate people to put pressure on governments to provide needed services and to protect the rights of all their citizens, including those with disabilities. They also have the potential to change attitudes,” she says.
WHILE KANTER is officially here on a Fulbright scholarship, an Israel-US academic exchange, and she is making real progress in establishing Israel’s first master’s program in disability studies at Tel Aviv University, her passion for this topic and her expertise has led to her involvement in a dizzying array of local projects over the past nine months.
Since she arrived, she has been cochairing a disability studies research group at the Van Leer Institute (with Tel Aviv University professors Nissim Mizrahi and Neta Ziv); in April Kanter participated in the country’s first Shekel International Disability Film Festival at the Jerusalem Cinematheque. She has also been working closely with the American Jewish Joint Distribution Committee on its MASAD disability project; assisting Meretz MK Ilan Gilon, chairman of the Knesset caucus for the rights of people with disabilities, in drafting regulations to implement the Equal Rights of People with Disabilities Law, and providing expertise to the National Commission for People with Disabilities as it prepares to ratify the UN Convention on the Rights of People with Disabilities.
“Since the last time I was here on sabbatical from 1993 to 1995, I can see an enormous change in attitudes toward people with disabilities,” acknowledges Kanter.
“In the past, no one wanted to discuss the rights of people with disabilities to live in homes in the community; the issue was hidden behind a curtain. But now this topic is out in the open; disability rights has become an important social issue that both the government and many sectors of Israeli society have begun to address. The biggest change has been the growth of the self-advocacy movement.”
People with disabilities themselves are speaking out for what they want, and organizing themselves into nongovernmental organizations to work for their rights, she says.
“In my view, that ultimately is the only thing that is going to change society because in the end laws are only words on paper, and it is up to the people themselves to enforce the laws,” adds Kanter.
Despite this progress, however, a lot more needs to be done to improve the rights and support for people with disabilities, says Kanter, citing the need for more inclusion of such people into the mainstream community, including Arabs with disabilities.
In general, she says, “Israel needs more community programs for people with disabilities, including people with severe disabilities and people from minority groups. Inclusion of children and adults with disabilities in our schools and neighborhoods is not just good for people with disabilities; it is also good for us and our children in order to teach us to appreciate difference. Disability is part of diversity.”
Specifically, Kanter talks about creating more opportunities for people to live in the community, which is still not the norm.
“Israel’s Ministry of Welfare and Social Services has made great progress on disability issues, but it still has a policy that a hostel of 25 or more people is considered community living. In my research, the countries that Israel wants to compare itself to, such as England, Australia, the US and Canada, do not consider a hostel of 25 people as the best model for community living,” she explains. “Community living is about homes, not services. Why should people with disabilities be denied the chance to live in a home like the rest of us? Support may be needed, but many of us need support at different times in our lives. Small apartments with up to three or four roommates living together and receiving the services they choose and that allows them to access and interaction with their neighbors, that is what it is all about.”
KANTER IS hopeful that the new program she is working to establish at Tel Aviv University will go a long way to refocusing the attention on the many problems faced by the disabled community.
“Currently there is no academic program in disability studies in Israel, only different courses offered by various departments at different colleges and universities,” she says, adding that the goal is to integrate disability into mainstream disciplines such as law, journalism, history, philosophy, psychology, health sciences, architecture, anthropology, religious studies, sociology and medicine, and to encourage students to examine “how people with disabilities relate to each field.”
“For example,” she says, “how do the media present people with disabilities? How are people with disabilities talked about in films? Are they portrayed as dangerous or pitiful, or like you and me? What do these different academic fields it say about the role of people with disabilities in society? What do they say about how we view ‘normal’ and who is included and who is excluded in society and why?
“Traditionally, journalists often refer to that ‘poor’ person with a disability who couldn’t walk. This view presents the life of the person with a disability as tragic. But that is not how people with disabilities view themselves. It is very different from a disability rights perspective where we would say: ‘Yes, the individual can’t walk, but it is society that is creating the barriers by not building ramps or elevators.’”
Kanter believes that asking such questions moves the emphasis for
changing popular misconceptions from the person with a disability to the
society, which has an obligation to change to include and accept people
“To some degree, moving away from a medical view of disability to a
social or human rights view of disability has already started to happen
but much more needs to be done,” she says, adding that her one year here
as a Fulbright scholar is not enough and that recently she and her
husband have decided to stay on an additional year to continue her
research and keep working for change.
“I love Israel and addressing these issues is connected to my Judaism.
It is not only about tzedaka
[charity] but more about tikkun olam
[repairing the world] and tzedek
It is less about compassion and more about how I believe a Jewish state
or any country, for that matter, should operate.”