Inclusion and institutionalization: Never the twain shall meet

Addie in Torrie Dunlap's outstanding TEDx presentation [YouTube]

You have to hand it to the PR team at Aleh. Everything it produces these days sports the terms "inclusion" and "complex disabilities", two very popular concepts in the disability arena.

With Rosh Hashana tonight, here is the introduction to an Aleh solicitation that potential donors received this holiday season:

For over 700 children with complex disabilities ALEH is a lifeline, helping them to develop far beyond their prognoses, and to be accepted and included within society.

Now, you might wonder, as I do, how inclusion and the Aleh enterprise can be mentioned in the same breath. I mean, isn't institutionalization the name of the Aleh game? And isn't institutionalization the antithesis of inclusion, the purist incarnation of exclusion that exists on earth?

So how can Israel's largest chain of warehouse-institutions for people with disabilities assert that it champions "inclusion"? [Click here for my previous posts about their work.]

Well, evidently, it can. And with ease. As long as nobody stops it. 

And droves of donors for whom Aleh is their only encounter with the world of disabilities flock to support it, unaware that they are being duped. They truly believe that Aleh embodies the lofty ideals of integration and inclusion that they so respect.

Sadly it seems they have never been exposed to speakers like Torrie Dunlap who can clearly and expertly define "inclusion" for them.

I am confident that a few minutes spent listening to this excellent speaker would straighten those well-intentioned people out. 

In this 2015 TEDx talk [the report is entitled "Why separating kids with disabilities from their peers hurts instead of helps"], for instance, she says

“I believe that a reason why, as a society, we have not embraced children with disabilities as full participants in our schools and communities is the limitation of our own mental models around disability, We have moved from hiding and institutionalizing children to a world where kids with disabilities are special and receive special services in special settings with special caregivers, and they - and their families - are disenfranchised from the community at large... ["Isn't it a pity? The real problem with special needs" via YouTube]

As you can see, even in the current post-institutionalization society of the United States and other developed countries, true inclusion is not yet a reality.

So it goes without saying that here in Israel, where such progress has not yet been achieved, inclusion for people with disabilities is a fantasy. Because, as Dunlap continues:

“When we create a separate, special place for children where their ‘special needs’ can be met, we are teaching them that their place is over there, with people like them and not in the full community.”

Dunlap related several anecdotes about children with disabilities and their treatment by teachers. She concluded her talk with this one:

I want to introduce you to my friend Addie. She’s 8 now, and in 3rd grade, but I want to tell you about her school music performances in 1st and 2nd grade. Addie uses a wheelchair and also does not use her voice to communicate. During the performance Addie sat 20 feet away from her peers, on the other side of a wall with her aide. The way she was made a part of it was by the decorations the class put on her wheelchair. So, there she is in her adorned chair far away from her peers. You can see which model is in play, right? Fast forward to 2nd grade and it’s time for a music performance. Addie has a teacher using a different mental model and this time she is on stage, next to her peers and she has a meaningful role to play in the show. They had used Addie’s recorder to capture her sister Emily’s voice saying “Thank you for coming to our performance” and after the few songs are over Addie hits a button that starts the recording. Huge beaming smile on her face. The teacher looked at the barriers and overcame them- and it wasn’t that difficult.

Dunlap is a superlative speaker and I urge you to listen to her entire talk. I have no doubt you will feel compelled as I am to convey to Aleh and its supporters this message:

"Separate is Not Equal"

and

"Institutionalization is Not Inclusion"

Shana Tova to you all!

Sixteen years after two massacres

The Pentagon on 9/11 [Image Source]

Imagine if Khalid al-Mihdhar or Nawaf al-Hazmi, the first of the 9/11 attackers to arrive in the United States in January 2000 and two of the five hijackers of American Airlines Flight 77 which they crashed into the Pentagon as part of the September 11 attacks, had survived.

Now imagine they had somehow escaped to Jordan where they live well and triumphant today.

Now (in our imaginations) add to that scenario a string of indictments and extradition demands by the FBI and the U.S. Department of Justice against the government which lets them dwell in peace within its borders. They would also most certainly be added to the FBI Most Wanted Terrorists list.

Next, tack on a refusal by Jordan's supreme ruler, King Abdullah II, to abide by the extradition treaty his father and President Clinton signed in 1995. Because, it goes without saying, al-Midhar and al-Hazmi would be heroes in the eyes of the Jordanian people. So the King, betting that the US administration, a long-time ally, would acquiesce, might continue to grant those mass murderers refuge.

How, in your estimation, would the State Department react? Would it indeed back off and ignore the indictment of the Department of Justice which was eager to try those murderers? Would it accept the King's absurd excuses as to why he can't adhere to a treaty duly signed and ratified by Jordan?

You know the answers.

That fantasy scenario is reality for the mastermind of a massacre here in Israel, Ahlam Tamimi.

As she has confessed in court and boasted to the media, she murdered fifteen Israelis of whom two - including my teen-age daughter - were American citizens. (A sixteenth, also an American, also a woman, has languished in a vegetative state ever since.)

That number out of an Israeli population then totaling 6.4 million is the equivalent of 668 American victims out of the total US population of 2001.

Tamimi's reality is she is today free, married, a mother and a celebrity living in Amman.

The reactions of the State Department to King Abdullah's conduct towards mass murderer, Tamimi are bafflng and intolerable. (I am deliberately skipping some important details. My husband and I plan to reveal those soon.)

Why is King Abdullah persistently hailed as an ally of the U.S. in its fight against Islamist terrorism?For several frustrating months my husband and I have been pleading with several State Department officials for answers to specific questions. We have been ignored outright or given evasive answers.

It may be 16 years since our daughter Malki was taken from us but the urgent need for justice, for evil-doers to be punished according to law, never fades. It cries out for action as piercingly as it did on that awful, hot August day when our child innocently stepped in to Sbarro to have a slice of pizza.

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.