Friday, April 22, 2016

A happy Passover to all

Here's my daughter Chaya, on her way to the family seder in another city. We're looking forward to a lovely time.

A reminder to take a look at how some organizations view children with special needs and their role in family events. It's entitled "The Pesach seder and the children who won't be there".

Political bondage

Netanyahu [Image Source]
Chag Sameach to all. Enjoy the holiday and don't waste any energy pondering our prime minister's recent declarations. I am referring to last week's headline grabbing "vow", as the media have called it, never to relinquish control over the Golan Heights.
“It's time that the international community recognize two fundamental facts,'' Netanyahu declared after posing with Cabinet members at a spot overlooking the Sea of Galilee -- Israel's largest water reservoir. “First, no matter what happens on the other side of the border, the line itself isn't going to change. Second, it’s time that the international community finally recognize that the Golan will remain forever under Israel's sovereignty.” [Los Angeles Times, April 17, 2016]
Well, it's hard to deny that those are powerful, emphatic words. But, as I said, don't bother focusing on, pondering or committing them to memory.

Because they were uttered by a man whose promises often prove empty.

In fact, on the heels of the previous "vow", in the wake of this week's bus bombing we were treated to a second Netanyahu assurance:
"We will find whoever made the bomb, we'll get to [the terrorists] who delivered it, we'll get to the people standing behind [this attack] and we'll settle the score with these terrorists." [Israel National News, April 18, 2016]
For those of us with a modicum of memory, those words ring hollow. We recall what the very same man told us when he was the opposition leader back in 2008.
"The government decided to release terrorists and I ask, why? In return for what? What have we received? This crossing of a line, of releasing murderers, is dangerous in the struggle against terror." The Kadima government had just released 200 terrorists as a “gesture” to Mahmoud Abbas in an attempt to strengthen his position. Only two of those had blood on their hands. [Israel National News, July 29, 2013]
Netanyahu asserted that rather than strengthen Abbas,
“it weakens Israel and strengthens terror elements. Most of the public – a great part of the public – understands that this thing is unacceptable and reflects weakness and a loss of direction. The government has lost its direction – if it ever had a direction to begin with.” [Israel National News, July 29, 2013]
Of course, in 2011 Netanyahu trumped the Kadima government not with the identical act but with the king of all terrorist releases, one that has never been replicated anywhere in the world. Some 1,027 hardened, convicted terrorists, including hundreds of murderers were freed that year by prime minister Netanyahu in the Shalit Deal.

Does that sound to you like a leader who "settles scores with terrorists"? Sounds to me more like a settled politician who uses terrorists to score.

So, this Pesach, as we celebrate our release from Egyptian bondage, let's remember that we still await our release from Netanyahu.  Too much pain and suffering have been inflicted by his actions over his current seven year reign.

Thursday, April 14, 2016

The Pesach seder and the children who won't be there

With Pesach at hand, most of us are eagerly cleaning house and planning the family seder, anticipating the love and togetherness with which it envelops us.

But apparently some of our neighbors believe that joy is not deserved by all. I learned this from yet another ad-filled brochure clogging our mailbox this week. La'inyan, which describes itself as "A Consumer Magazine for the Hareidi Community", sported this full page advertisement (see photo on the right). It exhorts parents of children with disabilities to exclude them from their family seder and offload them onto strangers - the better to enjoy their seders.

I must confess, the concept is so alien to me that my husband had to explain what the ad was promoting.  Once I got it, my jaw dropped after which I felt the overwhelming urge to puke.

The child in the illustration is not even severely impaired, not that it should be relevant. He looks like a very adorable boy with mild Down's Syndrome. What would motivate a parent to banish this child from the family seder? And what, other than greed and heartlessness, would motivate somebody to convince parents that they ought to do that?

The discarded child is given the endearing name Chayimke and the father holding him is described as "Free of Kushiyot". That's the term used in the Passover Haggadah to refer to the Four Questions - but here intended to connote "free of hassles".

This Seder-for-the-dumped-children is described in the advert as "the World's Most Special Seder", using the term that generally refers to children with disabilities,

So, to sum it up: For the bargain price of 220 shekels, you can enjoy your seder free of the love of your child with Down Syndrome and, if this repugnant ad convinces you, free of any guilt as well.

Oh, and here's the icing on the cake:
The general public is invited to participate in this "Special Seder" by donating to it! A toll free phone number is provided toward that end.

I'm already planning the outfit I'll dress our Chaya in for the seder. I want our children and grandchildren to admire her beauty and for her to enjoy the joyful sounds of her extended family

I suppose the readers of La'inyan would consider that crazy.

Thursday, April 7, 2016

A new law for others and a new oil for Chaya

Israel's parliament, the Knesset [Image Source]
Every so often, Bizchut ("The Israel Human Rights Center for People with Disabilities") pats itself on the back and shares the news with its supporters. Today, the organization considered itself worthy of a fresh pat. The occasion was passage of a new guardianship law:
We are delighted to announce a historic achievement that will impact on 50,000 people in Israel who have a guardian. Supported decision-making, an alternative to guardian promoted by Bizchut during the past two years, has been included in the new guardianship law just approved by the Knesset.  This change was actively supported by a coalition comprising 18 organizations who worked together on the issue and impacted by a Bizchut-led Facebook campaign that reached over 200,000 people. [From a Bizchut e-mailer I received today]
The Bizchut website explains that on March 29, 2016,
the Knesset voted in favour of the Amendment to the Legal Capacity and Guardianship Law. This amendment constitutes a substantial reform to the law and includes a number of dramatic changes: Recognition of supported decision-making; Recognition of lasting power of attorney; Cancellation of the term ‘ward’; Reduction of cases in which a guardian can be appointed to situastions in which this is necessary in order to prevent harm to a person when no less restrictive option is available; Cancellation of the option of appointing a general guardian without detailing the issues under his or her authority; Defining the individual’s wishes as a guiding element in the guardian’s considerations; Defining the rights of persons under guardianship such as the right to receive information from his or her guardian and the right to independence and privacy; Defining the right to legal aid representation in cases of involuntary hospitalization; Limiting the ability of a guardian to force a decision relating to fundamental issues; The new law constitutes a rare opportunity for recognizing the right of every person to legal capacity and to make the decisions that affect their lives...
This is indeed welcome and important news. But it won't affect the thousands of severely and profoundly impaired individuals including my Chaya. For her, full guardianship isn't even at the bottom of her list of worries because she couldn't survive for a moment without it.

While involved in campaigns like the one described above, Bizchut has been neglecting the needs of those like my daughter for whom this law is utterly irrelevant.

Specifically, it has neglected its past, forgotten mission to push for de-institutionalization and a redirection of funding to families caring for their children at home.

As the recent selection of recipients of the 2016 Israel Prize for Lifetime Achievement makes abundantly clear [see my earlier post, "In love with institutions"], this segment of the population with disabilities isn't on anybody's radar in Israel. In the eyes of mainstream NGO's and our government, the solution to their problems is simple: institutions, and the larger the better.

On a happier note, a lengthy CNN segment profiled our largest grower and distributor of medicinal cannabis, Tikun Olam, Another video report ["Video: Israeli boy finds relief through medical marijuana", April 2, 2016 - here] profiled a Haifa couple who - as we do - purchase CBD oil for their son who suffers from intractable epilepsy and severe CP. The couple noted that it supplements the CBD, which their son receives several times/day, with THC oil which it administers only on "bad days.".

Our THC bottle from Tikun Olam
I have been toying with the idea of trying THC but presumed that getting the stuff would involve a daunting string of phone calls and paperwork. But that video piece prompted me to  take the plunge.. I was blown away to learn from Tikun Olam's nurse that all we needed was a doctor's written authorization - and a pediatrician would suffice!.

Now, just three days after watching the video clip online, we are the proud possessors of this bottle of THC.

Today, while Chaya is actually having a "bad day", i.e. having lots of seizures, they are accompanied by her "central fever". This is an inexplicable neurological symptom which occasionally appears on the scene through no fault of any of us. When it does, Advil does the trick. Once the fever is lowered, the seizures taper off.

So I'm saving the THC for a "no-fever-bad-day". And, of course, you, readers, will be the first to hear how Chaya responds to it.

Monday, April 4, 2016

Israel is in love with institutions

Published by Lumos [Source]
Israel just can't seem to shake its infatuation with institutionalization.

Throughout the developed world, this cruel and archaic approach to caring for people with disabilities is being totally eradicated. Instead, those citizens are either being returned to their biological families, to adoptive families or to small group homes within the community. Including those with severe disabilities.

But Israel marches to its own tune. It generously enables that behemoth of institutionalization  - Aleh - to expand and tighten its grip on the population with disabilities. New sources of funding, support and accolades pour in incessantly. Starting with our prime minister and continuing on to our Ministry of Welfare, to the JNF and on to NGOs that nominally champion the rights of people with disabilities such as the Ruderman Foundation.

Let's face it: Israel's embrace of institutionalization has been tight for years. .

But this month, a red line was crossed when the Ministry of Education announced that one of the recipients of its Israel Prize for lifetime achievement and exceptional contribution to the nation of 2016 will be Maj. Gen. (res.) Doron Almog. He will receive the prestigious prize for "the enormous contribution of the village Aleh Negev - Nahalat Eran, a rehabilitation village for the brain-damaged which he founded" as a residence for his son, Eran, born brain-damaged.

Shortly after the village's completion. Eran died.

The Ministry asserts that 

"Aleh Negev-Nahalat Eran has become a groundbreaking setting for children and adults with mental and developmental limitations." [Ynet]
The adjective "groundbreaking" is used repeatedly by Aleh's PR machine because it impresses the uninformed public. Of course, the reason that Aleh is "groundbreaking" is that nobody in the first world is doing what it does, nor attempting to follow its lead. And for irrefutable, professional reasons. Life in an Aleh "facility" or "residential village" as they are euphemistically referred to, is a sad, detrimental and sub-standard one as is life in any institution for any person. [See this recent post of mine: "Perhaps you *can* fool everyone all of the time", March 18, 2016]

Where is the objecting voice of the Ruderman Foundation? That NGO purports to spearhead a campaign for inclusion of people with disabilities in the general community. Just two months ago, Mr. Ruderman wrote that Israel must confront many challenges in this area:
"And what are those challenges? First and foremost, living independently. Today, there are 10,000 Israeli with disabilities living in institutions and if you’re an Israeli with disabilities, you have few choices for independent living. You live with your parents for your lifetime with no adequate support or in a segregated setting, typically in severe poverty." [The Jewish Advocate, February 19, 2016]
And where is the voice of Bizchut ("The Israel Human Rights Center for People With Disabilities?) Back in 2008, Bizchut published a scathing attack on institutionalization entitled "Land of the Limited Possibilities - the Right of People with Cognitive Disabilities to Live Within the Community". The book recounted the horrific history of institutionalization, citing reliable professional condemnations of it along with profiles of residents who have suffered in Israeli institutions.

About "Aleh Negev", Bizchut wrote:
"...before the Shavuot holiday, Liat [a 31 year old resident] went home with her mother [who traveled six hours to bring her]. When her mother tried to shower her, Liat refused to remove her blouse, although she usually enjoyed showers. After she had finally undressed, her mother was shocked: Liat's entire back and stomach were covered in scratches, bruises, and hematomas while her left arm showed a strong bite mark. The severity of the injury prompted the family to lodge a complaint with the police after the holiday. Since the incident Liat shows signs of trepidation whenever she leaves the house and is fearful of showers and the toilet which has necessitated her return to the use of diapers. As a result of the report to the police, Aleh Negev conducted an internal investigation and several staff members were fired."
There is no reason to be shocked by this anecdote. Such occurrences are common in large institutions (Aleh Negev alone boasts nearly 200 residents; Aleh's four institutions house a total of nearly 1,000) and are central to the campaign to eradicate institutions.

Lumos is an organization dedicated to seeing that become a global reality by 2050. Founded by renowned author, JK Rowling, in 2004, its stated credo is:
"No child should be denied a family life because they are poor, disabled or from an ethnic minority. Lumos works to support the 8 million children in institutions worldwide to regain their right to a family life and to end the institutionalisation of children." [Lumos website]
And while we in Israel glorify our champions of institutionalization, Lumos was the overall winner of the UK's 2015 Charity of the Year Award. Will the vision Lumos disseminates ever reach our shores? Or will we proceed, alone, on our slide back into the dark ages?

Sadly, this Ministry of Education award seems to augur the latter.