Monday, March 11, 2019

The king's visit and a message to VP Pence

From the Jordan Times website
For some reason, the media in US are (at least until the moment I am writing this) avoiding this news item - the current visit of Jordan's King Abdullah II to Washington. Which is odd in itself.

Odder yet is the BFF relationship that the current US administration maintains with the Jordanian king. 

He is touted ad nauseum by US officials as a loyal partner in the fight against terrorism. His current visit with US dignitaries is about his sixth or seventh since the start of the Trump presidency.

And all the while he harbors a terrorist mass murderer in his capital, Amman.

Ahlam Tamimi, who perpetrated and boasts of the Sbarro pizzeria bombing in central Jerusalem on August 9, 2001 has lived on Jordanian soil since 2011 when she was freed from Israeli prison in the Shalit Deal. She had been sentenced to 16 life terms. Now she is an acclaimed public speaker, TV talk show host and inciter to terrorism.

Among her fifteen innocent victims were eight children, one of whom was my precious 15 year old daughter, Malki. She along with 2 other victims was a US citizen.
From the blog I co-write with my husband

Two years ago, on March 14, 2017, the US Department of Justice announced federal charges against her.

It demanded of Jordan that she be extradited to stand trial in the US. Since then, the King's regime has refused to comply with the signed 1995 extradition treaty between the two countries.

This, notwithstanding its past extradition to the US of several fugitives under that same treaty which it now insists is invalid.

We implore US dignitaries, particularly VP Pence who will welcome the King in a few hours, to call him out on this outrage.

It is no secret that the king's power is gravely threatened internally and is sustained by lavish US support, both financial and diplomatic.

We implore Vice President Pence to cease the hypocrisy of this so-called "strategic partnership". Insist on the extradition of terrorist mass murderer Tamimi - or stop propping up this royal dictator.

Sunday, March 10, 2019

Chaya, a budding paralympian

Chaya and me in the local public pool last week
Our local therapy pool, housed in my daughter Chaya's alma mater, is state of the art and very warm. But it frequently malfunctions in one way or another. The latest snafu has dragged on for more than three weeks. 

Fortunately, though, the timing was ideal:  the wetsuit we'd ordered on line for Chaya had already arrived and we'd been waiting for the opportune day to try it out at the neighborhood pool where I do my laps. The water there isn't heated much. 

Chaya used to shiver whenever we brought her there and appeared to be a perfect candidate for a wetsuit. 

To date, we've used it three times with undeniable success. Chaya floated without support, and even kicked a bit. Her caregiver and I believe that she may not have kicked with her usual enthusiasm because the wetsuit felt cumbersome. So, perhaps with time she'll get used to it and kick as she does in the therapy pool.

Most important, though, was that she didn't shiver, was relaxed and seemed to enjoy the water as much as she does the heated pool.

Several minutes into her third wetsuit session, she had a whopping seizure which would have panicked her hydrotherapist and prompted her to whisk her out of the water. Instead, I just held her until it passed and we then proceeded to have a productive session of 40 minutes. 

I'm now inclined to simply drop her sessions at the therapy pool once it's repaired. I do everything that the trained hydrotherapist does and unlike her, don't charge a fee. (Our health insurance only allows us 12 sessions annually at their expense.) 

Oh, and there's the fact that the best hydrotherapist dumped her so she would be with the second-best therapist. The latter likes to devote part of the 30 minute session on standing Chaya in the water. 

Since I walk with Chaya every day on land for 45 minutes, what's the point?

Saturday, March 9, 2019

For International Women's Day

My father was a photographer and captured a feminist march down Fifth Avenue, New York, in the early 1960's. Here are several shots he took that day:

Friday, February 15, 2019

As government funding for institutionalization continues to grow, some questions for Aleh

Israel's Knesset chamber
Some disturbing statistics just landed in my email. They highlight the stagnation in which Israel is mired when it comes to the civil rights of people with disabilities.
"The data indicate that in 2000, the outsourcing budget of the Department for Intellectual Developmental Disabilities was NIS 786 million (in 2015 prices), and that 92 percent of that budget was allocated for services related to institutional settings. In 2015, there was a substantial increase... and it reached NIS 1,993 million. The relative share of expenditures on services in institutional settings dropped to 85 percent. Over the years, we see a trend of the expansion of community-based services and the growth in the relative share for these expenditures." ["The Outsourcing of Welfare Services: Trends and Changes", Taub Center for Social Policy Studies in Israel, 2016 at page 378]
That's an astronomical sum for a not-so-wealthy country to pour into the process of locking up people with disabilities. The drop in funding for institutional settings from 92% of the total outlay to 85% is relatively insignificant bearing in mind its absolute growth.

Obviously, isolating that population in large edifices far away from family, home and community is a top priority for this government.

The mind boggles imagining the superb para-medical therapies, social enjoyment and family love that citizens with disabilities could derive were those many millions redirected to community-based care.

Our Chaya is now receiving individualized occupational therapy, hydrotherapy and - for a fortnight now - speech therapy at home. In-community care in action.

While Aleh boasts about its rehabilitation successes, it is worth recalling that the second in command at its Jerusalem branch which I toured last month [see my posts "Making history: After the raid" (December 24, 2018) and "Notes from an Aleh visit" (January 1, 2019)] in the company of Knesset member Nachman Shai was, despite my repeated inquiries, unable to tell me how many such therapies its 80 residents receive. 

When the numbers aren't embarrassing, you publicize them. That make sense, doesn't it? 

Several days ago, Aleh boasted ["Against All Odds: Aisha Transitions Home"] that a resident of its Aleh Negev facility who had lived there since birth had been so well rehabilitated that she was returning to her family. Sort of like a high school boasting that one of its 800 students had earned a high-school diploma. (Aleh claims it has a total of 800 residents in all its institutions.) Not exactly an emblem of success. 

But the story of Aisha and her "graduation" from Aleh begs many disturbing questions about the Aleh enterprise:
Screen capture
  • For one, if she could live with her family why can't the other residents? 
  •  Must a child "earn" the right to live freely and with his/her family? 
  • Do only children with high scores in para-medical therapies win release from these institutions? 
  • And, last but not at all least, is Aleh's goal really rehabilitation?
The last question is one to ponder particularly in light of the following line I recorded during the Aleh visit I just mentioned. The loquacious assistant director spouted a running commentary to us visitors that included this telling line:
"We view ourselves as a rehabilitative place - well, in medical definitions proper, we aren't denoted as a rehabilitative place."
To which I now say: If you're not technically rehabilitative, Aleh, why does your Facebook page label you as such in this heading?: 
ALEH - Advancement and Rehabilitation of Children with Complex Disabilities
To be clear, and based on my experience with them, I'm not holding my breath till Aleh answers. Though I do think they should.

Saturday, February 9, 2019

To defeat terror Israel must be serious about justice. Is it?

From Friday's funeral [Image Source]
Yet another precious Jewish teenager, Ori Ansbacher, has been brutally murdered in Jerusalem.

Another selfless, generous, talented and beautiful girl had her dreams for a bright future shattered. Another mother and father have had their lives ripped asunder. Tonight, it appears the Palestinian Arab charged with the crime has confessed.

Here is our prime minister's reaction:
"I congratulate the Shin Bet security services and the Israel Police that within a few hours captured the abominable murderer who murdered Ori Ansbacher. Israel's long arm reaches anyone who harms us and we will settle accounts with them."
Before you laud his determination and fortitude, remember this:

From Friday's funeral [Image Source]
My own teenage daughter was also brutally murdered right here in Jerusalem in the Sbarro bombing of August 2001 along with fifteen other victims, most of them children. Their murderer, Ahlam Tamimi, was also apprehended and also confessed. She was subsequently tried, convicted and sentenced to sixteen life terms.

But in October 2011, the same prime minister quoted above chose to release our child's murderer, return her to her home town, Amman, and permit her murderer/fiance to join her there for a life of marital bliss and continued incitement to terrorism via TV and public appearances.

So I urge you: Do not to be deceived by Netanyahu's words of empathy for the victim's parents. Do not fall for his assurances of justice.

He ignored every one of my husband's and my written pleas to keep our Malki's murderer imprisoned. 

My daughter Malki z"l
And since her indictment by the US Department of Justice in 2017 ["14-Mar-17: Sbarro massacre mastermind is now formally charged and extradition is sought"], our government has failed to do anything, as far as we know, to help effect her extradition to the United States. There she would be tried for the murders of three of her victims who were US citizens, among them, our Malki.

Haven't we buried enough of our beloved and angelic children?

Let's convey a deterrent threat: Perpetrators will face justice. They will serve out their sentences. They will not be released in future "swaps" like the Shalit Deal.

I know one leader on whom we certainly cannot rely to send that message. Remember that in April at the ballot box.

Wednesday, January 30, 2019

Red lines and Aleh's fundraising

Screenshot from the Aleh promotional video
So take your pick. Are we progressive and enlightened toward our citizens with disabilities?

Or are we more akin to medieval?

Below I link to two video clips from opposite ends of the spectrum.

First, an Aleh production championing the institutionalization of children with disabilities through the voice of an "abled" sibling.

Here goes: 
"This is my little sister, Shira. Mommy and Daddy were so happy when they brought her home from the hospital, but as Shira grew up, Mommy began to smile with sad eyes. While Shira's friends learned to do everything by themselves, Shira needed help and so did my parents. We looked for a place nearby, a warm and homey place that would help Shira grow, where she would be loved the way we love her but taken care of in ways that we couldn't. Aleh was a perfect fit for Shira. Every time we visit her, it's clear she is learning, growing every day. We can see that she's happy there and that makes us happy too."
Honestly, using a child's sweet, endearing voice to plug the vile practice of institutionalization crosses every ethical red line. The sibling of an abandoned child is likely to be plagued by myriad complex emotions. But not one of those is examined here.

Instead, Aleh posits that a child, like the one heard here, would be relieved and happy about her sister's removal from the family home. She wouldn't agonize over whether her parents might perhaps abandon her too. She wouldn't dread that her parents might seek a "nearby, perfect fit, homey place" for her too - were she to disappoint them with less than stellar achievements the way her sister did...

And a perfectly logical fear that would be!

This clip also evades the truth when it maintains that the parents profiled had no choice but to institutionalize their child. Aleh insinuates that no alternative options existed offering her the specialized care she needed.

In reality, Israel has multiple special education schools that can advance children like "Shira". A full range of para-medical therapies, highly qualified special education teachers, bus transportation to and from those schools and a full day of classes beginning early in the morning until the evening.

Some statistics extracted (and translated by me) from a recent (June 17, 2018) Knesset report:
In the school year 2017/2018, 106,000 special needs students were registered in Israel. 45,255 studied in classes within special education schools ranging from kindergarten to post high school. Children with disabilities are entitled to an education until the age of 21. A further 60,746 children studied in special education classes situated within regular schools. A total of 10,868 classes existed for those students. Of those, 2,238 were kindergartens, 4,771 were special education classes within regular schools and 3,941 were special ed classes within special ed schools.
My daughter Chaya in her once-weekly hydrotherapy
session yesterday. It's really not that hard to quantify
therapies if you want to!
If you are still convinced that living in large, isolated closed institutions like Aleh's affords residents superior rehabilitative opportunities, remember my recent visit to Aleh Jerusalem with Knesset member Nachman Shai (see "Making history: After the raid" and "Notes from an Aleh visit"). 

I repeatedly asked our guide, a senior administrator, for the number of individualized para medical therapies offered. Each time, the guide gave me ambiguities like "It's difficult to say" and "It depends" and "We believe in group therapies". I could not elicit any numerical responses and not for lack of trying.

A strong stench of deception is wafting from that Aleh video clip.

But there is hope. Some Israelis champion true inclusion and equal rights for people with disabilities in Israel. Several of them will be competing in the upcoming World Para Swimming World Series 2019. It will be the largest to date, taking place in seven countries across four continents from February to June. 

The competition is going into its third season bringing together the world’s best swimmers in some of the biggest and most traditional events on the planet. 

Here are two of our champions who will do us proud:

Tuesday, January 1, 2019

Notes from an Aleh visit

One of the cribs I saw at Aleh
I promised more transcribed info from my visit to Aleh Jerusalem ["Making history: After the raid"] and here it is.

Our guide was a senior staff member of Aleh Jerusalem whose position entails a variety of organizational responsibilities.

But on this particular day, what she did a lot of was "blow smoke in our eyes". Before the tour began, while we were congregated in somebody's office, she regaled us with tales of Aleh as champion of the family. I found this ironic, given that Aleh is in the business of taking children away from their families.

"We don't come to replace the family" was one of her memorable lines. "The family is an entire world" was another. "We try hard to keep contact going between residents and families", yet another.

Next, an anecdote: 
"One mother had no relationship with her son. The father was the only legal guardian. After years of efforts by Aleh's social worker, the mother finally came to visit him two years ago and now sees him - he's 21 years old - once every few weeks."
"Each family chooses what it wants and we follow its lead", we heard. Next we were told the tale of a mother who brings home her child's laundry and returns the clothes freshly washed and dried. I wondered how this devotion to her child's clothes could be relevant to her relationship with her child but didn't pursue that. 

"Every educational decision, every medical decision is reached with the involvement of the parents. We have long and meaningful dialogues and joint discussions beforehand."

Afterwards, there was prattle about parties to which parents and siblings are invited: "We want the siblings to see the positives of Aleh and not just to think of it as a hard place. It was just Chanukah, and we had a full party." Now how a "full party" differs from a "partial party" wasn't clarified. I didn't pursue that either. But it was implied that this was a significant party which somehow benefited the residents greatly.

We were then taken to the floors where the residents live. Two of the five floors are devoted to housing the 82 residents who range in age from babies to 40 years old. They were housed three or four to a bedroom and at 12:45 pm we found many in their cribs. Yes, even the young adults are relegated to cribs.

In one room, three of the four were wide awake and one, who was sitting up, smiled warmly when I approached and spoke to him. Why they were in bed - and our guide told us activities would not resume until 4 pm - is anyone's guess. We were told that normally they are put to bed slightly later but that because this was a fast day - it was the 10th of Tevet - the schedule had been slightly altered. Again, the connection between the two is anyone's guess.

I was particularly interested in learning how much para-medical therapy each resident receives. Therapies are a basic need for those with severe disabilities - precisely the population that Aleh invites. (Nearly all of the 82 residents are wheelchair bound, the guide told us). 

Many years ago, my daughter's physiotherapist told me that "therapy is oxygen for these children". And as I have learned from experience, the more severe the disabilities, the more crucial is individualized, intensive input of private therapy sessions.

But extracting information about such therapies proved challenging. Or, rather, impossible.

So, for example, when we visited the beautiful new therapy pool - empty - I asked how many times the residents receive hydrotherapy. The answer: "Once a week; once a fortnight. It's a relatively new pool. Just opened this year. The problem is with the logistics". 

I raised it again a few minutes later and was told: "Once a fortnight - or once a week". 

When I asked about the pool being open in the afternoons for a fee, she told me "Yes, it's open to the public." Apparently no logistics problem in the "for-profit" context.

I then pursued the question of other para-medical therapies, namely physiotherapy, occupational therapy and speech therapy. After getting a general answer, "It depends on the child", I pressed for a range of numbers of therapies or for the number that a typical child would receive. Still stone-walled. "It's very difficult to say. Because it's very dependent on the specific child" was her response, adding, "We very much believe in group therapies. For example, the physiotherapist works with groups. And the occupational therapist as well. If there's a specific child who needs something specific then, yes. Everybody with his own needs. That's why it's so hard to say. With physiotherapy there are those who receive it four times a day". 

I interjected, "Oh, you mean the respiratory physiotherapy?" It had been mentioned earlier. The guide said, "Yes, the respiratory physio." She reiterated: "That's why it varies a lot."

Now for those who are unfamiliar with it, respiratory physiotherapy is primarily concerned with developing, maintaining and restoring an individual's maximum movement and functional ability. In patients with respiratory conditions, physiotherapy includes, but is not limited to, chest physiotherapy or clearance of secretions, and breathing exercises. 

It is by no means the physiotherapy that children with functional disabilities, children unable to walk, stand or sit independently, need in order to progress. It is simply administered to keep the patient breathing.

Realizing that our guide may have been referring only to resident children, I asked about therapies for the young adults. They have a "different program", she said. "They get a combination of work and social activities. The work session is two hours long and its nature depends on the individual capabilities of each resident. They work with paper, clay, etc. It is very much personally adapted." 

As for therapies, "We try to weave them into the daily program, for instance, the walking." 

Well, you have to hand it to our guide: she's a champion waffler.

Coming up: the results of a follow-up phone call to that guide in which I try to elicit specific answers about therapies in Aleh.