Friday, May 4, 2018

The pilot project


Apart from the swing, we also await the launch of that pilot project to which Chaya has been accepted, organized by a unit of the JDC. It will enable us to provide her with our choice of paramedical therapies at home.

The funding for those services will follow the person with the disabilities rather than the therapists.

This is the model that we are advocating for all in order to facilitate de-institutionalization and the closure of warehouses like those of Aleh. 

For now, Chaya receives one session of hydrotherapy per week. But it remains the the highlight of her life. 

Here she is floating, kicking and obviously reveling in the hydrotherapy pool this week.

Swinging

From vendor's website
I finally received a price estimate for the Liberty Swing (mentioned here) from the Israeli distributor - a staggeringly high price. I included that detail in the proposal I sent yesterday to the Jerusalem Municipality as I was requested to do by the Parks Department. 

I am impatiently awaiting its installation and already envisaging Chaya swinging in it. Probably not advisable since I'm certain this will prove to be a long, drawn out process.

The distributor also informed me that two such swings exist in Hadera and two more have been ordered by other Israeli municipalities. 

But if that sounds impressive, here's what a fellow blogger with a daughter who is disabled wrote me: 
"We have many of these accessible playgrounds here in Los Angeles. I actually have one of the swings in my backyard -- I wish your Chaya could come over and use it."
Me too.

Thursday, May 3, 2018

Aleh is now "educating" our schoolchildren about disabilities

Teacher in wheelchair [Illustrative image via Getty]
Everyone loves to compare Israel with the Western world even though we are situated smack in the center of the Middle East. Usually Israel fares well. But when you juxtapose Israel's attitude to institutions for children with disabilities to that of the West, it's another story. The contrast couldn't be starker or more disheartening.

Recently, someone I know met up with an individual involved with the management of a social welfare organization in a country that will remain anonymous. That person gave me this account:
"I had a conversation recently with a senior executive in an overseas (non-Israeli, in other words) social welfare organization. Let's call her Mary.
Mary and her colleagues had been hosts to an Israeli delegation made up of visiting senior executives of multiple similar groups -- Israeli groups. It was a kind of mutual fact-finding and learning exchange exercise. The Israeli organizations in the visiting delegation represented different parts of Israel's social welfare spectrum. Mary told me she was struck, and others on her team were too, by some comments made by one of the Israelis. Let's call him Yoram. 
Yoram's Israeli organization operates what Mary called large-scale residential care facilities - institutional housing, in simple terms - for Israeli children with special needs.
Mary said this was the kind of solution that isn't found in her country any more. The laws and the practices have changed there and almost everywhere else. 
Mary said to me: "We don't want to see large numbers of special needs children institutionalized and the practice has been done away with."
But Yoram, the Israeli, was speaking to Mary's group using terms like "integration within the community". Mary said this seemed odd coming from an organization that does the very opposite. Mary checked with her translator just to be sure that there wasn't a misunderstanding about what the Israelis do, as opposed to what they say.
But no, there was no translation error, said Mary. Yoram meant what he said. He and the people working in his organization see themselves operating large scale residential facilities, but they believe they are part of the process of integration within the community. Mary said she and her non-Israeli colleagues were left puzzled by this."
Well, that's no revelation to us. Almost every PR release from Aleh ("Israel’s Largest Network of Care for Children with Severe Multiple Disabilities") presents that same disconnect between words and deeds. But it may surprise some to learn that Israeli disability activists and advocacy organizations tolerate - or even embrace - Aleh. In fact, some of them happily partner with it.

Take for example Aleh's project Tikun Olam, much touted in its PR releases. It involves visits to schools throughout the country to enlighten children about people with disabilities. Towards that end, it has partnered [see this page] with several partners that purport to champion the needs of those with disabilities.

One, for instance, Makom Lekulam, boasts on its website:
The Non-profit Organization “A PLACE FOR ALL – promoting social inclusion” (R.A.) is working to promote a society in which people with disabilities will be full partners in the fabric of life, and will be able to exercise their rights and fulfill their potential in the manner of their choosing. The activities of the organization are led by a diverse group of people, including people with disabilities, and thus the organization serves as a model for inclusion and for creating “a place for all”.
The organization’s goal is to bring about a change in the society’s perception of people with disabilities through education and culture, to increase the society’s familiarity with the world of people with disabilities and to generate awareness of the potential of this group to contribute to society and to benefit from it.
We believe that by working in an integrated way with the three sides of the triangle: perceptual change in general society, empowerment of people with disabilitiesand support for their immediate environment (family, educators, etc.) we can create a society with room for growth and for mutual support and responsibility, a place for all.
The Hebrew version of Makom Lekulam's site [this page] - but not the English version - goes on to say this (my translation):
This youth leadership group works within the Ministry of Education with thousands of students by conveying educational programs dealing with accessibility and inclusion in the educational system and unmediated encounters also take place among influential groups in society, for instance, army officers, employers, service providers, community Rabbis, students of education and more. 
As you can see, in describing itself, this organization doesn't mention its partner Aleh. But the program appears to be funded generously, via Aleh. An April 2018 Israel21C.org article ["Israeli 9th-graders learn life lessons from disabled peers"] says
ALEH’s plans to expand Tikkun Olam will bring the annual cost of the program to $1.85 million, to which the Israeli Ministry of Education will contribute $1 million annually for three years. The remaining $850,000 per year must be fundraised...
Aleh publicizes the above details whenever it mentions the program. Where does that kind of money go when it's volunteers that are conducting the sessions? Your guess is as good as mine.

All this deception impacts the public deeply, particularly foreign Jews with deep pockets and big hearts. This was demonstrated to me just a few days ago in a conversation I overheard. I was waiting for the elevator in the beautiful and bustling Shalva center in the Jerusalem suburb of Bayit Vegan. (My granddaughter who is not disabled attends an inclusive kindergarten there; I collect her once a week).

An elderly, vibrant American couple stood nearby chatting when I heard them refer to Aleh as "the other place", along with the name of its chief promoter and fundraiser, Doron Almog. Sadly, these supporters were under the misconception that Aleh is akin to Shalva which is a center providing activities and therapies to children and young adults with disabilities who live at home. 

My eavesdropping highlighted the uphill battle we face in persuading the public that true inclusion cannot abide institutionalization.

Monday, April 23, 2018

How about a shout out to J.K. Rowling?

The tweet is here
J.K. Rowling tweeted the above in response to a tweet that defended antisemitism thus: “Because Judaism is a religion and not a race...”

Her emphatic condemnation of antisemitism comes at a time when the incidence of attacks against Jews both physical and in social media is rising incrementally.

This is a perfect opportunity to praise Rowling for a different cause she champions: the rights of children with disabilities. Through the organization she founded and heads, Lumos, Rowling, promotes the inclusion of that victimized minority into the general community.

Lumos aims to achieve that goal by shutting down large, closed and isolated institutions. It targets precisely the sort of "facilities" that are operated by Aleh in Israel. (Note: Aleh refrains from ever uttering the word "institution". It adheres to the more neutral "facility".)

Rowling's organization helped fund a European initiative described in a 2017 report entitled "Opening up communities, closing down institutions: Harnessing the European Structural and Investment Funds" By Neil Crowther, Gerard Quinn & Alexandra Hillen-Moore November 2017

Here are some of the themes discussed in that paper:
  • Family and community-based living | Regardless of age or disability, all children and adults are able to live in the community with choices equal to those of others, with individualised, accessible support and opportunities to participate fully in community life. All children are able to grow up in a family or family-like environment.
  • Independence | When used with reference to independent living or community-based living 'independence' means that all people with disabilities have the same freedom, choice, dignity and control over their lives as other citizens at home, work and in the community....
  • Institutional care | Institutional care is the provision of care within a residential setting where residents are compelled to live together within an ‘institutional culture’. It segregates residents from the broader community and tends to be characterised by depersonalisation, rigidity of routine, block treatment, isolation and segregation from the wider community....
  • Community-based care | The term ‘community-based care’, refers to the spectrum of services that enable individuals to live in the community and, in the case of children, to grow up in a family or family-like environment. It encompasses mainstream services, such as housing, health care, education, employment, culture and leisure, which are accessible to everyone regardless of the nature of their impairment or the required level of support... In addition, the term includes family-based and family-like care for children, including substitute family care and preventative measures for early intervention and family support 
Those who read Aleh's Yom Ha'atzmaut PR release [here] congratulating itself for promoting inclusion of people with disabilities should not be fooled. No amount of verbiage about inclusion, advocacy of inclusion, praise for the inclusive projects of others, which Dov Hirst did ad nauseum in that op ed will render Aleh an inclusive enterprise. 

Aleh's prattle can never transform its institutions-the very epitome of segregation, isolation and discrimination into inclusive entities.

I would urge parents of children with disabilities who have either abandoned them already or are considering that step to watch the video at this Facebook link. It profiles an abandoned child with severe disabilities who was then adopted by loving, devoted parents - a couple who are afflicted with the very same disabilities as she is!

I also urge you, readers, to suggest to any parents of children with disabilities whom you know in that situation to contact me. Aleh professes to offer the one ideal solution for children with what it terms "profound, complex disabilities". 

My daughter Chaya is severely cognitively impaired, severely physically impaired, non verbal, unable to sit or stand, cortically blind and suffers from refractory epilepsy. Many of the children that reside in Aleh institutions are in a far better condition than that. So, I am in an ideal position to commiserate with and advise those who are overwhelmed by the challenge of raising such a child. These children need their loving parents and siblings as much as, if not more than, abled children do. Take it from me.

Playground swing update: We have learned that (at least) one Liberty Swing already exists in Israel, and was installed in Hadera in about October 2017. We hope to add Jerusalem to the list. We now await details of price. Once we have that, we plan to launch our crowd-source campaign and also submit our request to the municipality for evaluation. 

Can't wait to get Chaya into a Liberty Swing.

Tuesday, April 17, 2018

What we forget when we remember

Wednesday is Yom Hazikaron.

There really isn't anything to add to what we have already said and written about our precious Malki.

Snatched from us brutally in the 2001 Hamas bombing of Jerusalem's Sbarro pizzeria, she is mostly forgotten. 

The blood-thirst of that terror organization, its quest for murder of Jewish children, are also forgotten. 

The joy and pride of the mastermind of that Sbarro massacre, Ahlam Tamimi, are well and truly forgotten. 

And the fact that Tamimi is alive and well and free in Amman is not only forgotten - it has never been noted

Many across the globe now condemn Israel for defending itself against Hamas' latest attempts to infiltrate and murder on our soil. 

Perhaps a reminder of Hamas' past "achievements" will sway some of them. 

No words can do that better than those engraved on our Malki's tombstone:

Malka Chana Roth may G-d avenge her death
Dear granddaughter, daughter, sister
Devoted youth leader
Who did kindnesses and spread happiness

Born in Melbourne, Australia
14th Kislev תשמ"ו
Rose heavenward in a storm
in the center of Jerusalem
20th of Menachem Av, תשס"א

Sunday, April 15, 2018

Aleh's dictionary of disabilities

My sculpture: "Mother and Baby" (2008)
Aleh, Israel's largest chain of large, closed institutions for babies, children and adults with disabilities, persistently hijacks terms popular in the current disability narrative for its own advancement.

It misuses those terms in ways that are often diametrically opposed to their true definitions. Below are several examples:

"Inclusion"

As Aleh uses the term, it means isolation of children and adults with disabilities in large, closed institutions, permitting them contact with the outside world via visits and occasional outings. Here is an example of Aleh's use ad nauseum of the term "inclusion" in a report about its participation in the recent Jerusalem Marathon: 
 "Israel’s foremost network of care for children with severe complex disabilities, transformed the eighth annual Jerusalem Marathon into a celebration of disability inclusion and acceptance... ALEH was everywhere at once, spreading the message of inclusion..."
Real definition: 
"Inclusion of people with disabilities into everyday activities involves practices and policies designed to identify and remove barriers such as physical, communication, and attitudinal, that hamper individuals' ability to have full participation in society, the same as people without disabilities... Disability inclusion involves input from people with disabilities, generally through disability-focused and independent living organizations, in program or structural design, implementation, monitoring, and evaluation." [Website of Centers for Disease Control and Prevention]
"Complex disabilities" 

As Aleh uses the term, it means disabilities beyond the mild to moderate - disabilities which rob a child of his right to live at home with family. Aleh often describes itself in this way: "Israel's foremost network of care for children and young adults with severe complex disabilities" [Example]

Real definition:
Children with complex difficulties may need a multiprofessional input. Members of the team can include a developmental paediatrician, physiotherapist, occupational therapist, speech and language therapist, psychologist, special needs teacher, social worker and liaison health visitor. [From the patient.info website]
"Adoption of a child with disabilities"

As Aleh uses the term, it means a donation of cash to Aleh enterprises linked to the name of a child residing in one of its institutions. For instance -
"Forge a special relationship of your own by “adopting” one of ALEH’s children and sponsoring the therapies that will help him or her grow and develop. Keep in touch and see the difference you are making via a progress report and pictures." [Page entitled "Adopt A Child" on the Aleh website]
Real definition: 
Adoption is a process whereby a person assumes the parenting of another, usually a child, from that person's biological or legal parent or parents, and, in so doing, permanently transfers all rights and responsibilities, along with filiation, from the biological parent or parents. [Wikipedia]
"Family"

As Aleh uses the term, it means staff at Aleh institutions caring for the resident children and adults in lieu of their real families. Aleh repeatedly refers to itself as the "Aleh family". For instance,  a staff member states on a video clip that is published on the Aleh website: 
"I joined this amazing Aleh family because I want to help them change attitudes toward the disabled" [Video via YouTube]
Real definition: 
A group of people who are related to each other, such as a mother, a father, and their children [Cambridge Dictionary]
"Home"
As Aleh uses the term, it means Aleh's four large, closed institutions in Bnei Brak, Gedera, Jerusalem and a location in the Negev wherein reside a very large number of children and adults with disabilities:
Over 750 children with intellectual and developmental disabilities and medical conditions receive advanced medical, educational and rehabilitative care in ALEH’s four residential facilities. [The Aleh website's home page]
Here's how they're distributed (yes, I know the total below seems to be much less than the total above, but I am simply quoting them):
  • Jerusalem: "ALEH Jerusalem is much more than a facility.  It is a warm and loving home, founded on the belief that every individual is special and equally deserving of love, respect, and the opportunity to develop to full potential while enjoying true quality of life..." On the home page: "At a Glance: 80 residents". On this page, 82 (including "70 children and young adults")
  • Aleh Negev in Ofakim: "190 residents | Young adults-age 50, and highly dependent children" and (on the same page) "the facility is currently home to over 140 young people"
  • Gedera: "At Moriah, ALEH’s residential facility in Gedera, nearly 100 children and young people with complex disabilities receive the devoted, round-the-clock care they need to stay healthy and realize their potential" - and on the same page "10-30 years old | 109 residents"
  • Bnei Brak: "The Beit Yahalom housing facility is ALEH’s flagship and first and oldest department. It provides a warm, home environment for severely handicapped children, and provides all the care they need... 85 residents | Infants-45 years old"
Real definition:
The place where one lives permanently, especially as a member of a family or household. [Oxford Living Dictionaries]
Some readers of this post may be wondering what you can do to counter the impact of Aleh's high-powered PR machine. 



I'd like to suggest contributing to the installation of Jerusalem's first wheelchair-accessible playground swing. (It's in the video above.) Currently, not even one such swing exists in the entire city. My hope is that they will eventually be scattered throughout the city and the country, providing a fun, free activity to children with disabilities within the general community. 

Your donation will enable you to play an active role in educating Israelis about true inclusion, about living together with people who have disabilities. Not just visiting them in their closed institutions for photo ops.

A crowd-sourcing site for this project will soon be posted. Watch this space.

Tuesday, April 3, 2018

Geraldo regrets

So, Geraldo, you regret not joining Ahlam Tamimi in the massacre she perpetrated in 2001 at Jerusalem's Sbarro Restaurant murdering fifteen? 

Smiling on camera when she learned that eight of her victims were children? 

Boasting to this day about her "achievement" to crowds of fans? 

Important for me to know - my precious child was among the dead.

Some background here. And the video below:



Here's the text:
I regret in 2002 backing down from backing the Palestinians in their conflict with Israel. The Second Intifada. Because I saw with my own eyes how. And I know how this is going to resonate very poorly with the people watching right now. But still, I have to tell you how I feel. I saw at firsthand how those people were. And now you said 14, 15 people killed in Gaza. Palestinians killed by the IDF forces. I saw what an awful life they live under constant occupation and oppression. And people keep saying, "Oh, they are terrorists. Or they are this or they are that." They are an occupied people and I regret chickening out after 2002 and not staying on that story and adding my voice as a Jew, adding my voice to those counseling a two-state solution. It is so easy to put them out of sight, out of mind. And let them rot. And be killed. And keep this thing festering. And I think a lot of our current problems stem from – that's almost our original sin. Palestine and Israel. I want a two-state solution. I want President Trump to re-energize the peace process.