A glimmer of hope through the thick smoke

From the Aleh website

The smoke is blowing fast and thick from Aleh's PR whizzes.

In the hope of blinding us to the truth - that Aleh warehouses and locks up people with disabilities in large, isolated facilities - they inundate the public with faux-uplifting stories.

From motorcycle demos to soldier visits to lipstick sessions, their residents are being trotted out for inane photo ops that mask the sad reality of their existence isolated from family and community.

Now some of that smoke is being directed my way to my Jerusalem neighborhood. We are being treated [here] to a series of free lectures on various child-care topics. Free cake and coffee is thrown in to maximize the appeal. The lecturers will, for the most part, be employees of Aleh.

These tactics are thoroughly duping Israel's politicians and government agencies. Our Minister of Education, Naftali Bennett, regularly trots off to Aleh Negev to inundate it with worshipful words: "You at Aleh are the torchbearers; you cast light on us all..."

Our Ministry of Welfare honors Aleh with awards [here] and its own hyperbolic praise of Aleh's

"world view in which the child remains an integral part of the family, and even more – ALEH is an example of a community-integrated residence..." (emphasis mine)

The greedy tentacles of this ever-expanding monster have nearly extinguished all hope for change in the lives of Israel's citizens with disabilities. But they will not succeed if we continue the struggle for genuine inclusion and equality.

As I typed the above rant, I received the following notification from Bizchut about a grass-roots campaign now underway on social media (translated by me from Hebrew to English):

"'I too deserve to be able to roam around and mess around in the big city. I want to be like you and not like a patient in a special village for people with disabilities. I want to do National Service, I want to take a trip to the Philippines or Thailand. I want a dream job. I want a relationship. That's me.' Tommy Berchanko, a youth [in Israel] with disabilities and a social activist." 

In the last month, tens of similar posts have circulated; posts relating the stories of youths with disabilities and their parents. In a short time, hundreds of people joined the struggle. People with disabilities, their parents, friends and relatives who have decided to shout out their dream, the dream of a full life within the community, with personal assistance for every individual with disabilities. All this is in accordance with the international Convention on the Rights of Persons with Disabilities, which Israel signed in 2007 and ratified in 2012. We at Bizchut bless and support all the activists and invite you to join them."

 And the group that Bizchut mentioned posted the following on its Facebook page:

"We are a group working to advance legislation that will enable people with disabilities (without distinction between types of disability) to realize their right to independent and supported lives with equality and dignity within the community in accordance with their needs and wishes and with the necessary support to achieve that."

You can read the full manifesto here.

I was particularly heartened by the phrase "without distinction between types of disability". 

Which means, Aleh, your repeated use of "complex disabilities" to denote the children locked up in your institutions just won't cut it. Even they are entitled to live within the community, with their families enjoying true inclusion. Not visits from dignitaries, donors or volunteers - the crumbs of inclusion doled out to Aleh's residents.

So, dear readers, you can now do something concrete to help Israelis with severe disabilities, particularly those consigned to live out their lives in large, closed institutions like Aleh. Join this nascent campaign to propel Israel into the ranks of other enlightened countries throughout the world.

Seeing through the institutions and the smoke-screens

From the manufacturer's website

Today I chatted with somebody possessing inside information about Aleh Jerusalem. I contacted that person regarding Aleh's recent announcement of its launch of a project to equip its residents with Wizzybugs. There's a photo of one over on the right. It comes from the company that developed them.

This is an expensive wheelchair and, as I learned from my source, requires a protracted period of training before a child can operate it. My source told me that several children at the institution have been undergoing such training using a substitute device and that one family had purchased a Wizzybug for their child. And that, dear readers, constitutes the sum total of Wizzybugs at Aleh.

Now here is what Aleh's PR whizzes did with those Wizzybug facts:

• "At the beginning of November, ALEH, Israel’s network of care for children with severe complex disabilities, launched a new empowerment project at its residential facility in Jerusalem that provides toddlers with specially-designed motorized wheelchairs, allowing them to take control of their own mobility from the age of one year-old...
• “We at ALEH believe that every person has a natural right to dignity, the highest quality of life and to reach their fullest potentials. That’s why these brilliant Wizzybug chairs were a natural fit for us,” added Grayevsky. “We are thrilled for all of our amazing ALEH kids who are now benefitting from this exciting project, and we enjoy watching them use this new tool to move their lives ever forward.”. 

Notwithstanding those assertions, I had a strong feeling after reading the PR release and looking past the smoke-screen that Aleh has no more than one Wizzybug on its premises. After all, the photos accompanying the article only showed one. If there were a fleet of them, wouldn't we have been shown it? My source confirmed my suspicions.

I realize this deception is trivial and that harping on it, even as briefly as I have, could be construed as obsessive. But it is emblematic of Aleh's wider attitude towards the truth about children with disabilities.

For instance, their incessant insertion of the word "inclusion" into every item they disseminate. Aleh's approach toward these children and adults is the antithesis of inclusion. Their claims otherwise - as found here - are nothing but "alternative facts".  Likewise their irrational insistence that their large, closed institutions are "home" and their staff "family" to the residents could not be further from the truth. 

Occasionally, their slick PR whizzes slip up as they did here where they concede that the children in Aleh Jerusalem do have real biological families who visited them on Hanukka last week. This just confirms the claims of Lumos that over 80% of all children who have been handed over to institutions throughout the world are not orphans:

"Eight million children live in orphanages and other institutions globally. More than 80% are not orphans but have been separated from their families because of poverty and discrimination." [Lumos]

Many of the these families would not have abandoned their children had they received the government assistance they need and deserve to care for their children. 

Somehow these facts elude the army of supporters that Aleh has enlisted, among them employees and volunteers - and including my source. They tell me that the residents had been neglected by their families and enjoy a higher quality of life in Aleh. They are clueless as to the de-insitutionalized systems of care now pursued in the rest of the developed world. They presume that Israel's choice between quality care and family love is the ideal and the only solution. 

When will enlightenment reach our shores?

The minister needs an education

The Aleh Negev facility: Home?

Recently, my husband met with a senior official in one of the government ministries to discuss matters relating to Keren Malki, the Malki Foundation, the non-profit we together founded in 2001 to memorialize our murdered daughter, Malki.

As the conversation drew to a close, the official praised the foundation's work subsidizing para-medical therapies for children with disabilities who live with their families. But she differed with Arnold on one point: she believes that raising such children is not just a privilege, as he had said to her, but an obligation.

While we do not state our views as dogmatically as she did, I do often wonder how parents who abandon their children with disabilities rationalize that step. What explanation do they give their other children for refusing to raise their sibling? Do they concede "Well, he didn't live up to our dreams and expectations so we decided to dump him in an institution?"

How do they reassure their other children who quite possibly lie awake at night wondering "Will I also be abandoned for getting lousy grades in school? Or for getting into fights with my classmates? Or for being punished by my principal?"

Such ponderings would only be natural.

Despite that senior official's encouraging words the Israeli government persists in entrenching institutionalization in Israel. Today we learned that Education Minister Naftali Bennett visited Aleh Negev on December 4th to laud the establishment there of the first Bnei Akiva branch for children with disabilities.

Please enough smoke in our eyes!

When will this government wake up and smell the coffee? It is alone in the developed world. Its regressive attitudes to children and adults with disabilities have been rejected by other enlightened states. In February 2016, Mr. Bennett visited Aleh Negev, and his praise for the institution matched his words this week. He has had plenty of time to learn of Lumos and its tireless efforts to end global institutionalization; to read the warnings of professionals against the physical and emotional harm that life in large, closed institutions inflicts on its inmates. But he clearly hasn't done so.

His continued  support for Aleh violates the civil rights of citizens with disabilities and is a blight on our society.  Mr Bennett, who clearly hasn't made any progress in the last two years said:

"You, at ALEH, are the torchbearers, and you cast light upon us all – light for the children who need it most, light for their parents, light for all of Israel, and a 'light unto the nations'.” ["Naftali Bennett visits ALEH", December 4, 2017]