Monday, November 20, 2017

On status epilepticus and the status of institutions

With my daughter in hospital
We are currently ensconced in the hospital caring for Chaya, our youngest child.

Twelve days ago, we brought her to her neurologist after a seizure-packed week. By then, she was in true status epilepticus, the apex of epileptic states.

After several minutes in the doctor's office, we were hustled off to the ER where she was subjected to an avalanche of new drugs.

Now, with Chaya showing minimal improvement and barely responsive, we are nearing despair. 

It is telling that we are immersed in caring for Chaya in November – National Family Caregivers Month. Of course, it isn't known as such in Israel but then this is a country that in meaningful ways discourages parents from being caregivers for children with severe disabilities; children who will remain such their entire lives; children who will never be independent, productive adults.

It should surprise no one that we lack a month, or even a week, to salute parents who decide to embrace such children.

In the medical system, my husband and I are often asked "So where does your daughter live?" Our response: "With us at home" is invariably met with a degree of amazement.

That attitude should not be surprising in this institutionalization-friendly state. Generous government funding flows to institutions for each person with disabilities that is deposited there. On the other hand, a mere pittance is allotted to those who opt to care for their offspring with disabilities at home.

This is the way Israel rewards its precious resource of devoted parents. 

I can't think of a more effective means of dissuading parents from keeping their children than that financial policy. In fact, somebody ought to alert Aleh, our largest chain of closed institutions for people with disabilities, that it can hang on to its PR cash. The relentless ad campaign it wages worldwide is superfluous. Institutionalization is a deeply entrenched tradition.

Also coincidentally, the Ruderman Foundation is holding its Summit 2017 this month. Dedicated to the advancement of people with disabilities, the Foundation says the event is intended to:
"bring together 1,000 people from a variety of sectors including: tech, policy, human services, fashion, education, social justice, business, housing, advocacy and more to network and share best practices. Our goal is to inspire, motivate, and arm attendees with the know how to keep up the work of advancing full inclusion of people with disabilities in every aspect of life. These two days will be packed with over 15 panels and plenaries!"

We wonder how the Foundation reconciles this project with the fact that its website contains an article lauding the work of Aleh institutions (archived here in case it disappears). This baffling promotion of institutionalization has appeared there since 2013 and despite our queries about it of Ruderman officials two years ago, it has not been removed.

So what can you do to shake things up? 

Whenever you hear Aleh mentioned, speak up about the evils of institutionalization and the right of every child - regardless of his abilities - to live with his or another family within the community. 

Point out that all those mawkish tales we read of salvation by Aleh are smoke in our eyes. They are disseminated to shield us from the truth about Aleh's operations. 

More about that blinding smoke in an upcoming post...

Wednesday, November 1, 2017

Are more terrorists about to be freed by Israel?

Yahya Sinwar, a committed jihadist with a bloody background, was recently appointed head of the Hamas terrorists in Gaza. He was sentenced to 4 life times for terror and murder when Israel released him in the 2011 Shalit Deal
[Image Source]
[A version of this post, under the title "This time, just say no to Netanyahu", was published by Times of Israel on October 30, 2017.]

With the scars of the 2011 Shalit Deal still fresh, we now discover Israel's prime minister Binyamin Netanyahu learned nothing from that fiasco.

Six years, almost to the day, after he freed 1,027 convicted terrorists, Netanyahu announced the appointment of Yaron Blum as negotiations coordinator with Hamas - man who as "a member of the small negotiations team" was instrumental in that earlier deal with the devil.

This time around, Blum's goal will be the return of the bodies of two Israeli soldiers killed in 2014 along with two mentally ill hostages who crossed the border into Gaza, in exchange for another mass release of Palestinian terrorists.

As Blum put it (my translation of the Hebrew source):
"In my opinion, since this is a national mission, we are obliged to do everything to bring the boys home so I accepted the position with excitement."  
He was echoing Netanyahu who said upon publicizing the appointment:
“We understand our moral and humanitarian debt to do everything possible to bring them back”  
adding that he was sure Blum would make a “very important contribution to this sacred mission.”

Once again, no red lines. Just buckle to Hamas’ demands.

At that press conference, Netanyahu noted that he had called the families of the Israelis being held by Hamas in Gaza prior to making the appointment and stressed to them his commitment to returning them to Israel. This is reminiscent of Netanyahu and his wife’s two hostings of the Shalit parents prior to the deal’s signing. I don't know if he has or hasn't hosted one or two families whose loved ones had been killed by the prisoners he released. I do know that at the time he falsely asserted to the press - and his staff echoed this to me personally - that he had written to all of them to explain and to comfort. Neither my husband and I nor any one of the dozens of terror victim families whom we asked has ever gotten such a Netanyahu letter.

This chilling deja vu strikes while many of us still suffer from the carnage and injustice that Blum's previous government assignment wrought. (For instance: "11-Sep-14: Freeing terrorists: The price in human lives lost and in justice perverted keeps getting clearer")

A former senior official in the Shin Bet, he has served in recent years as a senior executive in the private sector. He seems to re-surface whenever Netanyahu feels his back against the wall and craves an image boost.

In 2011, prior to the Shalit Deal, it was the social protests that prompted that craving. We learned this from David Meidan, Netanyahu's special envoy to negotiations for the release of Gilad Shalit ["Israeli Negotiator: Social Protest Affected Netanyahu's Decision on Shalit Deal", Haaretz, July 24, 2012]. In a closed lecture entitled "Secrets Behind the Shalit Deal" that he gave at Tel Aviv University in July 2012 [reported in "New Info on Shalit Deal Shows, Yet Again, That in the Mideast, Nothing Is as It Appears", Haaretz, July 24, 2012], Meidan admitted that the decision to close the deal was influenced by political considerations.

Netanyahu had been insisting that his approval of the swap was based solely on security and diplomacy factors. Anyone who accused him of harboring other considerations incurred Netanyahu’s anger or even the threat of a libel suit. One exception was his concession to the German newspaper, Bild, that his wife Sara had pressured him to proceed with the mass prisoner release.

(Anybody recall which official position Mrs Netanyahu held at the time??)
             
Now, of course, it is the threat of indictment that weighs on the beleaguered prime minister. What a god-send it would be for him to win kudos with the return of those MIA's and captives.

The Israeli habit of releasing prisoners in exchange for kidnapped soldiers and civilians has always been highly controversial. Intelligence sources (quoted in "‘PM ordered rearrests of dozens of prisoners freed in Shalit deal’", Times of Israel, June 24, 2014) estimate that 60% of those who have been freed in these lopsided deals over the decades have subsequently been imprisoned again for terrorism.

The Shalit releasees are no exception.

In April 2014, a few hours before the Passover Seder, Baruch Mizrachi was shot dead in a roadside attack near Hebron ("03-Oct-17: Released in Shalit Deal, a pious Pal Arab murderer is going back (too late) to life in an Israeli prison"). The 48-year-old Israel Police superintendent was killed by Ziad Awwad, a Hamas operative released in the prisoner swap. Mizrachi was the sixth Israeli to be killed in attacks carried out or planned by Shalit Deal releases. Estimates of how many Shalit releasees are now back in Israeli jails for having engaged in terrorist activities range from the seventies to 120 or more.

Many pundits who were silent prior to that release of 1,027 terrorists minced no words in condemning it after the fact. Here is what the former Haaretz columnist Ari Shavit wrote the day after the Shalit Deal was executed:
Image Source
A first morning after the insanity. A first morning after the hysteria. A first morning after the loss of judgment and the loss of our senses. After 1,941 days and 1,941 nights dominated by kitsch, this morning we are waking up to reality. Opening our eyes and rubbing them to see who we are and what has happened to us. This morning, when Gilad Shalit wakes up in his bed, we can already tell the truth: We went crazy. During the past 64 months, we simply went crazy. Because of the profound and justified guilt that we all felt for one boy and one family, we stopped acting in a reasonable manner. Because of the twisted awareness that we suffered in the era of Channel 2, we worked ourselves up into an emotional frenzy. We reached the point where we are willing to sacrifice hundreds whose names and faces we are not familiar with, in exchange for the one whose name and face have become a part of our lives. We reached the point where we conduct our national affairs like children - without wisdom, without morality and without mature responsibility... ["In wake of Shalit Deal, Israel must return to sanity", Haaretz, October 19, 2011]
Has the Shalit Deal taught us nothing? Are we doomed to awake to another bleak "morning after"? Will we again hand over our lives to Netanyahu to use as political currency?

We could direct Netanyahu to the following excerpt from “Fighting Terrorism: How Democracies Can Defeat Domestic and International Terrorists” published after the 9/11 attacks in the U.S:
Freeze financial assets in the West of terrorist regimes and organizations; revise legislation, subject to periodic renewal, to enable better surveillance against organizations inciting violence; keep convicted terrorists behind bars; refuse to negotiate with terrorists; train special forces to fight terror; and, not least important, impose sanctions on suppliers of nuclear technology to terrorist states.
Netanyahu himself wrote that book. If he meant what he said there, he will stop rewarding Hamas for holding Israeli hostages and start punishing them instead.

Wednesday, October 11, 2017

Israel's Interior Minister vs. Accessibility

Bizchut calls for its petition to be signed
You may have thought that Israel is generally sensitive to the needs of people with disabilities. After all, this is a first-world country, advanced in most ways, with a disabled population of more than 1.6 million. Of that number, some 51,000 are IDF veterans injured in the line of duty, a revered group.

Israel's flourishing institutionalization enterprises (see this past post of mine for instance: "Even Chief Rabbis make mistakes")and its penchant for warehousing the disabled are surely just an anomaly. Right?

Well, not exactly. Israel is often tone-deaf to the needs of its citizens with disabilities in more ways than one.

Notwithstanding the enactment thirteen years ago of legislation requiring accessibility to all public buildings and services, many remain utterly inaccessible.

Instead of striving for progress in that area, Interior Minister, Aryeh Deri, is determined to roll back the clock.

Most local authorities (including the wealthy Tel Aviv and Rishon Lezion municipalities) are loathe to spend on accessibility renovations. Consequently the wheelchair-bound, the elderly and parents with strollers find many buildings like kindergartens, schools and libraries, out of bounds..

The Treasury has given 80 million shekels to the weaker local authorities to enable the necessary construction. Last year a total of only 8 million shekels of that grant were used.

Now local authorities have enlisted Deri's aid in amending the law to release them from its obligations. He will accomplish that by suspending the State's powers to enforce the law. Naturally, no enforcement means no further accessibility.

The people at Bizchut are urging all of us who care about accessibility for people with disabilities to voice our protest to Minister Deri by signing their petition here.

Wednesday, September 20, 2017

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!

Monday, September 11, 2017

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.

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.

Friday, August 11, 2017

Words at the graveside

Malki in her last year: Always smiling
At the adjoining graves of my daughter Malki and her friend Michal, both murdered in the Sbarro pizzeria massacre in Jerusalem in August 2001, we marked the yahrzeit yesterday. I spoke in Hebrew to those assembled. Here is what I said, translated to English:

This is the first year we can say that Malki and Michal have been gone longer than they were in our lives. And difficult though it is to admit, there are memories of you, Malki, that have faded.

This was made evident to me recently when I found a birthday card in which the entire family wrote you personal wishes. I began mine with "Dear Mali" and added "Sorry to use that nickname - I know you don't like it". I had entirely forgotten that you didn't like that name.

And the words of the Eish Kodesh - Rabbi Kalonymous Kalamish Shapira, the Rebbe of Piaseczna and of the Warsaw Ghetto - which have accompanied me since Malki's murder, remain relevant after all this time.

On Shabbat Nachamu, the Sabbath following the fast of the 9th of Av, in 1941 when the Rebbe himself was already a bereaved father, he wrote:
"There is suffering for which one can be comforted. But for the loss of a person there is no comfort... because it is not only their absence which pains us, and not only our longing for them which tortures and oppresses but rather what pains us is what happened to them, their own loss. True, there in the heavenly world they are surely fine. But G-d created man so that he should live out his years - until he reaches seventy or eighty. And how many blessings are there in the Torah about long life... And that is why our hearts ache."
This was brought home to me when, as I do whenever her yahrzeit approaches, I opened one of Malki's diaries, the detailed and revealing one that she kept during her last year.

On the first page she answered the ID questionnaire. On the line "Partner", I read her heart-wrenching response. With utter trust, she had written: "Still unknown but he will arrive, G-d willing, with time."

For the loss of that life, filled with joy and satisfaction, that was so cruelly snatched from Malki, our hearts still ache.

And also for that additional layer of pain, the injustice which has tortured us since 2011 - I refer, of course, to the freedom enjoyed by the murderer of Malki and Michal. We persist in battling that infuriating reality so that at least that source of suffering will disappear.

May we win this battle soon.