Friday, September 30, 2016

A thousand shekels a day?!

This is a follow-on to my previous post: "New tentacles for Aleh"

My husband and I attended a meeting this week at the invitation of the social worker in the community department of a leading social action group. We met with several other individuals variously connected to people with disabilities either through family or work relationships. It was a group of insightful, concerned and compassionate people sharing the goal of getting a new law passed in the Knesset that will greatly benefit people with disabilities.

We brainstormed about the approach that should be taken to galvanize public opinion in support of the law. It would empower people with disabilities - or in the case of those profoundly impaired, their families - to decide which government assistance they will receive and where they will live. The authorities would only override those requests that are utterly unfeasible. Currently, the circumstances of their existence is determined by "the powers that be" without their/their families' input.

This social action group has enlisted the cooperation of some twenty other Israeli organizations in conducting an intensive Internet and media campaign in advance of the upcoming Knesset committee hearing where the draft law will be considered. They anticipate significant opposition - yes, even in the 21st century - to this patently reasonable and long-overdue law.

The social worker who convened the gathering has already conducted a similar meetings of people with disabilities and shared some of their ideas with us too. She noted that none of them felt like pathetic victims and they all urged incorporating humor into the campaign.

Needless to say, the law would enable my husband and me to receive government subsidies towards Chaya's therapies here in her home. Right now, having turned 21 and ended the schooling part of her life [see "For our children with special-needs, nothing is ever enough"], she receives no paramedical therapies other than those I myself do with her,

Clearly this campaign will be an uphill battle. The Israeli public is unaware that the status quo here is far from ideal. If they are not entirely indifferent to this, people seem to believe that Israel's citizens with disabilities are cared for in an exemplary manner. And why shouldn't they? Most of our leaders and mentors are outspoken proponents of our status quo, including, of course, our prime minister and our latest winner of the esteemed Israel Prize, Doron Almog [see "Cultivating the Negev on the backs of the most vulnerable Israelis"]. Both tout the largest chain of institutions here, Aleh, ad nauseum.

And on a Rosh Hashana note, here is what Aleh told its donors in its holiday mailer. Following its hotline phone number for donations, and a detailed daily schedule of the children who are confined to its institutions, it declares in huge letters:
1,000 shekels is the average daily cost of every one of the 700 children in Aleh
Oh, really? And that's cheaper than funding the care of such children at home? I could enlist an army of elite professionals to help me out here with a daily subsidy of that magnitude.

Tuesday, September 27, 2016

New tentacles for Aleh

July 2016 visitors to Aleh's
desert facility [Image Source]
Many of you believe institutionalization can be defeated without ever mentioning Aleh - flag bearer of Israeli institutionalization. Many of you explain that singling out Aleh, the largest chain of institutions in this country, will only weaken the movement. You emphasize that our goal must be to shut them all down. And that we must resist being side-tracked by attacks on specific ones.

And so, fortuitously for Aleh, it remains unhindered by that activism.

Aleh is expanding, flourishing and extending new tentacles throughout this country unimpeded by laws, judicial decisions or negative publicity. Moreover it is winning the praise and largesse of people from every walk of life in the Jewish community both in Israel and abroad. People who are, inexplicably, ignorant of the global movement to de-institutionalize all people with disabilities. And Aleh is gloating about all that. Just visit its website.

Which brings me to its latest project: a new town beside its desert institution, aka Aleh Negev. Now you may wonder, with good reason, why an enterprise dealing in children with disabilities would segue to the real estate domain. But it is easily understood when you just look at all the other realms it occupies in addition to its original, core raison d'etre: institutionalization.

Here is its latest media release reporting the September 13th laying of the cornerstone for Aleh Negev's" new residential neighborhood...
The new neighborhood will be adjacent to the village [that refers to the institution (FR)] and will enable staff, volunteers and students to be more available and more accessible to the village’s residents and patients, saving valuable time currently spent on long drives to work, and contributing to the unity and quality of life of the village’s staff..." [Aleh source
First, it's noteworthy that Aleh'a PR cronies themselves concede here that, in this institution, more than 200 individuals exist in isolation from the rest of society. They can only be reached by their caregivers, according to the Aleh site, after "long drives to work" leaving them not very "available or accessible" to their charges.

Of course, it goes without saying that depositing highly-dependent people in such a location also isolates them from their own families who may not have the time or resources to trek there often.

This real estate venture is just another of several initiatives that Aleh is embarking on. Another is the construction of "hospital wings" in each of its branches. The argument is that such wings - and huge sums of money are already being raised for them - will enable residents in need of hospitalization to be cared for in the very institution where they exist 24/7. But why? Ambulances can transport them just as easily as abled people.

Aren't people with disabilities in need of hospitalization entitled to the same standard of hospital care as the the rest of the population? Should they be treated in some two-bit, ersatz hospital "wing" just because it will help open the purses of compassionate, ignorant donors?

I haven't heard any other protests against these "hospital wings". Please let me know your views on this issue.

Israeli activists for people with disabilities: wake up and smell the coffee.

Friday, September 16, 2016

As the week of 9/11 ends

News report of last week's commemoration in Jerusalem
[Image Source]
I remember well the day of the horrific terror attacks on the United States fifteen years ago on September 11th.

Still raw from the murder of our daughter Malki one month earlier, I was certain, the world would now empathize with our victimization at the hands of Palestinian terrorists. Israeli pundits discussing the attacks on TV reached the same conclusion. Israel is no longer isolated, they proclaimed. It has gained  allies in its war against terrorism.

Hmm. Not exactly the way things panned out. We are still isolated. We have few allies. And we certainly aren't embraced by other victims of terrorism as a member of their "club". (My husband wrote about his experience with "the club" here - under the sub-heading "A European encounter".)

The brand we are plagued with - as opposed to the rest of the Western world - is deemed the justifiable sort of terrorism that goes by euphemisms such as freedom fighters, protesters, rebels and resistance activists.

Nevertheless, as in the past, the Israeli government has chosen to commemorate 9/11 very intimately - as if we had been victims that day along with the US. That in itself is commendable. Five Israelis were among the nearly 3,000 victims of the 9/11 attacks and most Israelis feel an affinity for the American nation. Moreover, the JNF monument, called The 9/11 Living Memorial, is the only monument outside of the United States that lists the names of all the victims.

What is odd - some would say deplorable - is that Israel's remembrance of 9/11 and respect for its victims has exceeded that of its own terror attacks and victims. In 2009, a memorial [see Wikipedia] listing all of 9/11's victims was erected by the JNF in Jerusalem.

A memorial with the names of the hundreds of victims murdered by terrorists here in Jerusalem was promised to us fourteen (!) years ago - and has never been built. Here is what the designated site looks like today:

Photographed at the Machane Allenby site in Jerusalem yesterday
I was shocked to re-read what I had written about this site thirteen years ago ["No memorial, not even a plaque", Jerusalem Post, July 30, 2003]. It seems the previous year, a group of bereaved parents had sent the Jerusalem municipality an attorney's letter which eventually resulted in a meeting and in an assurance that plans were already underway to erect a central memorial at the Machaneh Allenby site on Hebron Road, on Jerusalem's south side. They assured us that representatives of the families of terror victims would henceforth be active partners in all relevant decisions by the municipality.

I wrote this in 2003:
When I visited the Mahaneh Allenby site last week [nine months after that meeting] the litter had proliferated and the weeds had grown taller, but no other changes were evident... The site of this intended central memorial stands today pretty much the same way it has stood since it was originally landscaped and terraced about four years ago.... A manager in the City Engineer's office recently conceded to us that the project is headed nowhere because it lacks a ba'al habayit - an internal champion- who will promote it, raise the necessary funding and ensure it goes somewhere."
The trend toward marginalizing Israel's terror victims stems from the highest echelons of power here. Otherwise, the reluctance to remember our victims in public, in full view of pedestrians and tourists, would not be so extreme and persistent.

This week we heard our prime minister spew his predictable banalities at a 9/11 cabinet meeting:
“We remember the victims. We embrace their loved ones. We stand with our greatest ally, the United States of America, and with other partners in the battle against militant Islamic terrorism that spreads its fear, its dread, its murder around the world,” [Via the website of the Israeli Foreign Ministry]
Let's all bear in mind that Netanyahu has chosen to embrace their loved ones while ignoring those of his brethren. He has demonstrated nothing but disdain for the victims of terror residing in the state he rules -  treating our pleas, our letters, and our loved ones' right to justice in the context of the Shalit Deal with utter disregard. And he has certainly done nothing to promote the construction of a public monument naming all of Jerusalem's terror victims.

At the same time, he has pandered to Hamas terrorists, satisfied some of their most extreme demands - to wit, the Shalit Deal - and is dedicated to making life for Hamas prisoners as comfortable as possible within the  limits of incarceration. (I addressed this in a post last month: "Fifteen years on, there's no relief from the grief".)

Friday, September 9, 2016

Salute the superhumans

Itzhak Mamistvalov [Image Source]
I realize that, given the profundity of my daughter Chaya's disabilities, the Paralympics should be totally irrelevant to me.

But, somehow, I  am always thrilled by the feats of people with disabilities of any sort. Unfortunately, I've found that the dearth of local media attention accorded the event in the past isn't very different this year. A fact which shouldn't surprise us. It's in keeping with this society's general view of people with disabilities which I (tiresomely?) harp on here.

Nevertheless, it is noteworthy and disappointing.

Since I was awake in the wee morning hours anyway re-bandaging Chaya's horrific pressure sores, I watched the live coverage of the Paralympic's opening ceremony on Israel Television, feeling as though I must have been among a handful viewing it.

One of the Israeli commentators complained about the meager airport send-off the Israeli delegation of Paralympic athletes had received. Another focused on the financial straits that beset those athletes. It's an across-the-board picture of neglect and uninterest in our citizens with disabilities.

An impressive website profiling all the American Paralympians was also mentioned. Unfortunately, neither that site nor the official Paralympics site offering live video coverage seem to be accessible in Israel. (Why??)

The stories of indomitable bravery and tenacity that characterize Paralympic athletes around the world are compelling.

Tatyana McFadden leads the way at the London 2012 Paralympics
[Image Source]
Take, for instance Israeli Itzhak Mamistvalov who was born with cerebral palsy, and swims competitively using only his right hand. In 2004, he won two gold medals and one silver and set two Paralympic records. In 2012, he won a bronze medal.

Then there is the American, Tatyana McFadden, 27 who was
born with spina bifida and adopted from a Russian orphanage, [and] is paralyzed from the waist down. [Her sister] Hannah McFadden, 20, adopted from Albania, born without a femur in her left leg, is an above-the-knee amputee. She uses a prosthesis to walk and a wheelchair to race. [New York Times, September 1, 2016]
Both will compete in Rio, and Tatyana is likely to win gold several times over as she is the world-record holder in the 100, 400, 800, 1,500 and 5,000 meters.

Brazilian Olympics boss Carlos Nuzman praised the athletes at the gala opening ceremony thus: “You are superhumans.”

Not at all hyperbolic, I'm sure you'll all agree.