Friday, September 1, 2017

Inclusion via institutionalization?!

A drawing of mine of a child with severe
disabilities who returns home every day after
school to the family home
I suppose for some the adage "Repeat a lie a thousand times and it becomes a truth" applies. But some are simply jolted by a lie anew each of those thousand times.

Count me in that crowd.

So every additional mendacious op ed, every PR release, every advertisement that Aleh spews out leaves me as livid as its first.

So it was with the recent opinion piece that the Jerusalem Post obligingly published [here] for Aleh, penned by the director of Aleh's Jerusalem institution, Shlomit Grayevsky.

It relates the timeline of Aleh's expansion over its twenty years of existence.
In 1988, Israel passed a law that focused on providing equal opportunities and experiences for all and creating integrated programming in educational settings. With the goal of promoting this ideal of equality in every aspect of life and creating a residence and treatment center that felt like a true home, ALEH... took this breakthrough and ran with it, utilizing this new legislation to pave the way for governmental participation, funding and support... ["Disability inclusion: The ultramarathon of social justice goals", Jerusalem Post, August 15, 2017]
Needless to say, living in large, closed institutions far away from their families does not afford people with disabilities anything remotely resembling "equality" with the non-disabled segment of society.

Israeli law has become much more explicit about the rights guaranteed to people with disabilities since 1988. It is now abundantly clear that the Aleh option and that of all the other institutions warehousing their residents are the antithesis of the options that Israeli law prefers.

The Equal Rights of Persons With Disabilities Law (1998) guarantees “equality to the disabled and the entitlement to make decisions relating to his life, according to his desires and priorities”.

The right to live in the community is specifically dealt with in a 2000 amendment to the Care of the Retarded Law which states that when placing individuals in facilities outside their homes, preference must be given to residences within the community.

That legislation was bolstered by the Lior Levy case (Lior Levy et al v. State of Israel et al. [2008]), in which Israel’s Supreme Court affirmed the right of even the severely disabled to be housed within community.

In 2012, Israel ratified the United Nations Convention on the Rights of People with Disabilities which affirms the right of people with disabilities to live within the community, and to have ”access to a range of in-home, residential and other community support services… and to prevent isolation or segregation from the community”.

It behooves the Jerusalem Post to vet its opinion pieces for accuracy and truthfulness. To claim - as Aleh does in this piece - that its staff  "have dedicated their lives to providing quality disability care and promoting inclusion" is the height of gall. Isolating babies, children and adults from the rest of society because of their disabilities - which is what Aleh's institutions do - is nothing short of exclusion and discrimination.

For anyone who has wondered whether Aleh's  "villages" or "facilities" or "just-like-home" enterprises are in fact institutions despite Aleh's obsessive avoidance of  that word, the definition below should clear up that confusion.

According to Lumos, the respected public organization founded by JK Rowling to advocate for the rights of institutionalized children throughout the world, institutional care is defined by certain characteristics:
 • Unrelated children live in the care of paid adults • Children are separated from their family and often their community • In many cases, they do not have the opportunity to bond with a caregiver • Institutions run according to workplace routines, instead of responding to individual children’s needs  • Although some institutions are well-resourced with dedicated staff, they cannot replace a family • Eighty years of research has shown the negative impact of institutionalisation on children’s health, development and life chances, as well as a high risk of abuse [Lumos Fact Sheets]
Particularly today, when Israeli children returned to school after two months of quality time with their parents and siblings, let's remember the children who through no fault of their own were denied that enjoyment.

Throughout the summer, as they do all year long, many children with disabilities had no outings or one-on-one time with their families. They languished in locked buildings, far from their families and from the rest of society, cared for by strangers.

Misrepresenting that existence as "disability inclusion" does not magically transform it into its antithesis. It is exclusion and discrimination pure and simple.

And that's the truth.

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