Shabbat Itanu Speech at Congregation Beit Haminyan, by Diane Richler, President – Canadian Friends of AKIM

Delivered May 2, 2015

Shabbat Itanu has been designed to foster the inclusion of people who have disabilities within the Jewish community. Itanu means “with us” or “together”, so today is devoted to reflection on how we can overcome the exclusion that many people with disabilities and their families feel.

My thesis is that by including people who have disabilities we can build a stronger Jewish community and a stronger Israel.

Several people responded to the news that I had been invited to speak here today by insisting that Judaism explicitly rejects inclusion because it sets people with disabilities apart and denies them full participation in all aspects of Jewish life. However, I prefer the perspective of Tzvi Marx who talks about the dissonance between certain Jewish laws and the moral values that underpin Judaism. And those moral values are consistent with inclusion.

 

Of course we have had many leaders with disabilities: Isaac who was blind; Jacob who had a limp; Moses who had a speech impediment; and Moishe Dayan who had lost an eye. If people with disabilities could become among our strongest leaders can we also find a place for others who have a disability?

 

I am not a Jewish scholar but I have been working with people who have a disability and their families for over 40 years, first in Canada and then internationally. I began my career as a new way of thinking about disability was emerging. When I studied psychology the only reference to disability was in a course on “abnormal psychology” which focused on deviance, including, homosexuality, criminal behaviour and disability. But in sociology we read Goffman’s “Asylum” which examined the impact of large institutions on the people incarcerated there.

At the same time, in the late 60’s in Scandinavia, people were questioning the treatment of people who had intellectual disabilities – then known as “mental retardation” – and proposing that they should be supported to live lives similar to those of their non-disabled peers, a concept known as “normalization”.

I grew up in secular Jewish home, with strong Jewish values and was active in Jewish youth groups which fought discrimination and promoted social justice. My background in psychology together with my interest in human rights helped me land a job as a research assistant in 1971 at what is now the Canadian Association for Community living. I left there as CEO 30 years later. The main focus of my work was closing large institutions for people with intellectual disabilities and developing the range of services and supports in the community that would enable people to fully participate. What I learned through that work was that communities which would include people who had an intellectual disability could include everyone.

Our movement was given a big boost in 1985 with the adoption in Canada of the Charter of Rights and Freedoms which prohibits discrimination on the basis of disability. With the Charter, disability moved from a charity and medical model to become a matter of human rights.

For the past 15 years I have worked internationally, visiting more than 60 countries. I worked with a federation of associations of families of people with intellectual disabilities in the Americas, and then became president of the international federation, known as Inclusion International. I then chaired the International Disability Alliance, the coalition of regional and international disability groups made up of Inclusion International, the World Blind Union, the World Federation of the Deaf, the World Federation of the Deafblind, the World Network of Users and Survivors of Psychiatry, among others. I now coordinate the International Fellowship Program for the Joseph P. Kennedy, Jr. Foundation and sit on the Human Rights Advisory Board of Open Society Foundations.

When my godson was diagnosed with autism 20 years ago, my personal and professional lives came together.

 

My themes today are:

  • What is disability?
  • What does inclusion means in the context of disability?
    • Internationally
    • In the Canadian Jewish community
    • In Israel
  • How supporting AKIM, the Israeli association of persons with intellectual disabilities and their families, is a way to contribute to strengthening Israel.

 

What is disability?

When most people think of disability they think of physical or sensory disabilities – using a wheelchair, being blind or deaf. But disability also includes the often invisible disabilities such as intellectual and psycho-social disabilities.

There has been a major evolution in thinking about disability since I was at school, from a medical or health issue to a social one. In its recently revised International Classification of Functioning, Disability and Health, the World Health Organization defines disability as the interaction of an individual who has an impairment with the environment. Problems with human functioning are categorized in three interconnected areas.

  • Impairments are problems in body function or alterations in body structure – for example, paralysis or blindness.
  • Activity limitations are difficulties an individual may have in executing activities – for example, in walking or seeing.
  • Participation restrictions are problems individuals may experience in their involvement in any area of life – for example, in employment or transportation.

The term “disability” is an umbrella term referring to difficulties encountered in any or all three areas of functioning.

More recently, the United Nations Convention on the Rights of Persons with Disabilities provided this definition: “Persons with disabilities include those who have long term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Generally there has been very poor data available on the numbers of persons with disabilities, but the first World Report on Disability produced by the World Bank and the World Health Organization in 2011 states that 15% of the world’s population or 1 billion people have a disability. Interestingly, countries like Canada which have better data collection procedures generally indicate higher rates – 18% in our last census.

My experience is mostly with people who have an intellectual disability and their families and therefore that is the emphasis of my remarks today.

 

What does inclusion means in the context of disability?

It is significant that when I took my job as research assistant in 1971, the organization I went to work for was called the Canadian Association for the Mentally Retarded. In 1985 –the same year the Charter of Rights and Freedoms was adopted — it became the Canadian Association for Community Living. Similarly, the international organization of which I became president was formerly the International League of Societies for Persons with a Mental Handicap and it became Inclusion International. Both changes were reflections that for people who had a disability and their families, being part of their communities was more important than their diagnosis

In Inclusion International, from the local level to global, our work is about building inclusive communities and societies. Our vision is of a world where people with intellectual disabilities participate on an equal basis with others, and achieving that vision means more than providing services to individuals and their families. The vision means that we need to be engaged in broader challenges that face and sometimes divide our communities. Including the excluded requires “tikkun olam” –that we repair the world, not by repairing or fixing people to fit into our communities and societies as they currently exist but rather transforming our communities, and social institutions so they are inclusive. It means, for example, that my godson Jared did not have to have his autism “fixed” so he could fit into a regular classroom, but that teachers, the school and his fellow students changed the way they were organized to ensure that Jared was welcome, could participate and was included.

International situation

For people with disabilities and their families, exclusion is a daily reality –exclusion from school, from employment, from community groups and from our cultural institutions. When I was president of Inclusion International we did a global study on the situation of people with intellectual disabilities. Two key messages came out of that study: people with intellectual disabilities were: INVISIBLE and POOR. They felt invisible because of negative attitudes and prejudice. Often they were not registered at birth, because registration is expensive in many places and doesn’t seem like a worthwhile investment to families who don’t expect their children to ever go to school, hold a job, or vote. Similarly, they are often not counted in the census data, nor are they out in their community – in religious institutions, recreation, shopping, or the labour market. Sometimes they are hidden by their families out of fear that other members of the family will be less desirable in marriage for fear of having other children with disabilities.

Most people with intellectual disabilities are poor because they live in the global south. They are poor monetarily but also because of inadequate health care, early intervention, and supports to families. Children and young adults don’t develop the networks, or ‘social capital’ needed for community participation and economic contribution in adult life.

People with disabilities and their families also face relative poverty because of the costs of disability, with families bearing most of the burden of the additional costs of disability. There is an economic cost: the need to have caregivers, even for adult sons and daughters; diapers; special diets; and modified transportation. There is also a cost when one or more parents leave the formal or informal labour market/economy, or cannot get promoted in order to meet the needs of a child with a disability – because of inadequate family supports. Parents may need to take time off from work because of illness of their child with a disability, or to attend appointments. For example, a mother in Washington, DC with a PhD who has a very senior job told me recently that she expects to quit work when her son, who has Down Syndrome, graduates from high school, because there is no program after high school that will support him.

Families also pay a social price. Sometimes they are unable to participate in their community because of lack of sleep, or lack of respite. They may be unable to go out on dates, to coach hockey, to accompany field trips. Often their families are considered dysfunctional, when the real problem is not the disability, but the lack of supports. Arie Rimmerman, a respected researcher at Haifa University just published the most up-to-date review of family policy and concluded that parents apply for out of home placement because of lack of family support policies that would help balance demands of caring for a child with a disability with needs of other family members, and lack of inclusion.

These systemic issues are illustrated in countless individual stories. There is the school I visited in Mali, which reports receiving at least one new child a month whose disability was caused by untreated meningitis. There is the frantic mother in Nicaragua who can’t afford anti-convulsant medication, and whose son has over 40 convulsions a day. There are almost identical stories from Bolivia and Romania of two girls with disabilities, tied by their mothers each morning so that they would stay in the house while the mothers went out to work. There is the single mother in Moscow, whose daughter has been refused by every service agency in the city, and who sits home, alone, day after day. There is the young woman in Namibia who told us that she was never given breakfast so that her sisters and brothers could eat before going to school.

Being cognizant of the exclusion of people with disabilities has implications for international development. We are all devastated by the current situation in Nepal with over 6,000 people dead and at least 14,000 injured. How many of those injured will survive with permanent disabilities? When new schools are built, will they be accessible to those with physical disabilities. Will the new teachers who will be needed to replace those who died be trained to teach ALL students?

Toronto Jewish community

Thinking of our own community, where are the 15% of our community in our synagogues? At our seder tables? Our Shabbat tables? At our weddings and bar and bat mitzvahs? In our day schools?

For me, inclusive schools are the key to an inclusive society. I have a tee shirt from Kenya that says “Children who learn together learn to live together”.  

I was very moved by the testimony of a mother in New Brunswick who appeared before a parliamentary committee to explain why inclusive education was important for both her sons. She explained that it was important for her son who had a disability because in addition to his academic achievements he was learning to get along with his peers and developing relationships that would serve him later in life. This mother also recounted how inclusive education was good for her non-disabled son, and the others like him. She told how the first time she met a person with a disability was when her own son was born – and how ignorant and frightened she was. She said that the children who grew up with her son would be better prepared to relate to people with disabilities – in their families, or in their work as teachers, nurses, bus drivers or librarians. She was talking about “social capital” the relationships we develop that allow for mutual support.

I often think of Catherine who has cerebral palsy. She made frequent visits to the hospital emergency ward and they were usually a nightmare for her and her mother since the staff were very nervous about how to treat someone who didn’t speak and whose body seemed always uncooperative. That is until the day they arrived at the hospital and were greeted by a young doctor who had grown up down the street from Catherine. He was completely relaxed talking to her and examining her, and he helped put the others at ease.

I also think of my godson Jared, who despite having very little speech was invited by his non-disabled classmates to go skiing, camping and water-skiing. They even took him shopping for new clothes so that he would be “cool”.

 

Israel

In Toronto we often hear of the plethora of Israeli organizations which support people who have a disability, but there is little context explaining where those organizations fit onto broader Israeli society. Just for people with intellectual disabilities there are scores of separate organizations. Most of them have a limited mandate and serve a very particular population. There are some excellent services, but overall, programs in Israel are very segregated. There are still many large institutions, and 20% of people with intellectual disabilities live in them. Children with disabilities are almost all in segregated special schools. The situation in Arab communities is appalling. For example, I visited Rahat, a Bedouin community near Be’er Sheva where the mayor talked of the high incidence of disability caused largely by intra-marriage compounded by extreme poverty and family violence.

But the story is not all grim. Global recognition of the discrimination and exclusion of people with disabilities led to move by the United Nations to develop the Convention on the Rights of Persons with Disabilities which was adopted in 2006. The convention was ratified by Canada in 2010 and by Israel in 2012.

My presidency of Inclusion International coincided with the negotiation of the Convention. It was negotiated by governments with active participation of civil society. Those of us representing disability organizations could participate in all the debates and worked with the delegations of the member states.

The Convention defines what universal human rights mean for people with disabilities. It focuses on the promotion and protection of all rights including accessibility, health, inclusive education, employment, and self-determination – the right to make one’s own decisions. The Convention requires that states which have ratified it not only provide supports to people with disabilities, but also that they make fundamental changes to public institutions to ensure they are inclusive.

I’m sure there are many cynics here who question the value of any United Nations activity. But I have observed how the debate during the negotiations resulted in a global education process about persons with disabilities, their disproportionate poverty and exclusion. To date, 154 countries have ratified the Convention, making it the law of their countries. Many countries have been reflective about their policies and programs. In Israel, one major impact has been the questioning of large scale institutions and consideration of what it means to live in the community.

AKIM: A way to contribute to strengthening Israel

When I first worked in the Americas I learned a lot about how disability could bridge political chasms. I was astounded to see a former Argentinian colonel cooperating with a Nicaraguan Sandinista. But they were both fathers of children with intellectual disabilities and they were determined to do whatever was necessary to make life better for their children. I was later involved in supporting a project in Nicaragua assisting ex-combatants – Contras and Sandinistas – working together to improve conditions for people with disabilities, regardless of cause.

Those experiences taught me that because disability crosses all social strata, all political parties, all religions, promoting support for and inclusion of persons with disabilities is a way to promote social justice and peace for all.

After my term as President of Inclusion International I was asked by AKIM to help them in Canada. I saw that as an opportunity to use my knowledge about disability and inclusion to help Israel.

AKIM is the largest organization supporting people with intellectual disabilities in Israel. It has 64 local branches all over the country and provides daycares, support to families, residential, recreation and vocational services, regardless of race or religion.

Canadian Friends of AKIM was begun by parents of a son who has a disability over 50 ago. Among other projects, we have supported the participation of people with disabilities in the IDF; a recreation program in Rahat; and the move of some families from the south for some respite from the shelling last year.

Now, in cooperation with the government, AKIM is supporting the move of 900 people from institutions to the community. This will require our support on a scale beyond what we have ever done. We already have indications of strong foundation support, but we need help – financial, but also in planning and execution of a major fund-raising effort. I would be happy to talk to anyone interested in getting involved in this worthwhile project.

Conclusion

The current chair of AKIM in Israel is Ami Ayalon, the former Admiral of the Israeli navy, former head of Shin Beit, and former Cabinet Minister. When he visited Canada he told us that the biggest challenge facing Israel today is not security, but social exclusion. He talked of the isolation of the poor, of immigrants, of Arabs and of people with disabilities. We have seen some of that sense of exclusion in the recent demonstrations by the Ethiopian population in Israel, as we did of poor people last summer. Ami shared a report he wrote last July after a visit to Ashdod and Ashkelon, both sites of heavy shelling. He wrote:

“We met some wonderful people dealing with the harsh reality that is theirs.

They talked about their fears, anxieties and the way to overcome them. Some of them sleep in the shelter, since they cannot make it from the end of the corridor in 35 seconds from the minute the siren is heard…

The following day I participated with my wife at the closing of the Ramadan dinner in Nazareth. I was particularly touched by the letter of the chairperson of the AKIM branch, Mr. Karim Izbak, in which he said that his home was open to anyone from the South of Israel who would like to come.

I believe that the things I saw, reflect experiences shared by many in AKIM and in our society. This is the bright side of the dark times we are forced to live. I have no doubt that the capacity, even in harsh times as these, to stay human – to respect each other and to be concerned by the other – are the preconditions for (a true) victory.”  

Jean Vanier, the son of our former Governor General is the founder of l’Arche, a community where assistants share their lives with people with intellectual disabilities. In his book Becoming Human, based on his Massey lecture, he wrote that when people get to know others who have a profound disability they find their own humanity.

For me, supporting AKIM is a unique way to keep in touch with my own humanity, to support Israel, and contribute to Tikun Olam.

Thank-you for allowing this Shabbat Itanu to be a moment of reflection on how Beth Haminyan and each individual member can contribute to a more inclusive Toronto Jewish community, a more inclusive Israel, and a more inclusive world

SHABBAT SHALOM.

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