Sunday, February 27, 2022

Learning from Putin

Tamimi's FBI Wanted poster - and my Malki in a family portrait

If we needed convincing that a single bloodthirsty, hateful individual can inflict widespread carnage and fear, we certainly have it now.
 
One after another, pundits have uttered the same words, "I never believed Putin would do this."

There is another bloodthirsty, hateful individual on the loose. But unlike Putin, she can be easily arrested, tried, convicted and imprisoned. 

Ahlam Tamimi, self-confessed mass murderer, is living a free, charmed life in Amman, Jordan. At any moment she can be found inciting millions to terror and murder from various social media and mainstream media platforms. 

She has already murdered fifteen innocents including eight children - a deed she boasts of repeatedly to her followers.
 
Tamimi, who stole our precious 15 year old daughter, Malki from us, is one of 25 FBI Most Wanted Terrorists. The poster they issued says in bold text: SHOULD BE CONSIDERED ARMED AND DANGEROUS.

In 2017, she was indicted by the U.S. Department of Justice which demanded her extradition to the US by King Abdullah's government. Despite a valid treaty for that purpose signed and ratified in 1995, Jordan responded: Nothing doing.

But then all efforts to halt her campaign of death and destruction ended. And nobody, but nobody, is interested in jump-starting the pursuit.
 
Not the State Department. Not the White House. Not the Jewish American leaders and the influential organizations they run. Not the Israeli government.

King Abdullah, the unelected, authoritarian ruler of Jordan, has succeeded in silencing all of the above. An impressive English accent, wide vocabulary and glib, smooth-talk will get you far in today's realpolitik. Justice doesn't feature too often. Abdullah leaves no doubt about that.

Until now, my husband and I and a small group of friends and supporters have been the only ones determined to tackle this monster and have her brought to justice in a US court.

Perhaps the lesson Putin has taught us all will also alert the powers-that-be to the dangers of a free Tamimi.

Friday, February 25, 2022

An SCN2A reminder

Thursday February 24 is International SCN2A Awareness Day. 

While the discovery of a genetic mutation in your child surely sounds disastrous, for us, it was strangely, welcome news. 

That's because our Haya's mutation was found to be de novo; in other words, it wasn't hereditary. My husband and I didn't give it to her - and we didn't pass it to our other children.

That knowledge, which came to us only a few years ago, was a huge relief for us all. 

Naturally our children's pregnancies still generate the worry that pregnancies tend to. But we are largely exempted from the additional fear that a baby might have Haya's syndrome.

But like most other SCN2A families, we hope for a cure. Or at least more targeted treatments for people with this mutation. 

We are tired of piling on meds that may or not help, of groping in the dark. We wish Haya's current  neurologists were not as baffled and stumped as those we consulted  over two decades ago. 

Here's hoping progress in the SCN2A world will be made while Haya can still benefit from it.

Wednesday, February 23, 2022

The ugly truth is seeping out

There have been contrasting developments on two fronts.

On the personal front:

Haya appears to be deteriorating, judging by her performance during the assisted walking I do with her each night. For the past week, she starts either seizing or trembling after about 15 minutes of walking. It happens regardless of how calm she is at the start of the walk.

It's very disheartening, to put it mildly.

At least her floating hasn't been affected. On Monday, she had an impressive hydro session, floating calmly from the moment she entered the water:


On the public front:

The last two weeks have seen both shocking and encouraging eventualities affecting the community of disability activists. The two tend to come together. That's because the sad reality is this: without news of outrageous abuse and neglect, there is no progress in the living conditions of people with disabilities. 

I shared some of those revelations two weeks ago: Is this what it takes to move the Knesset to action?
 
On Saturday night February 19, 2022, Israel's KAN TV station aired this report:. 


The defensive reactions of the institutions and of the responsible government ministries are no less infuriating than the conduct of the violent, sadistic caregivers. 

It's in Hebrew, so for those who can't follow, my summary notes from the Hebrew source:

Excerpts from the KAN clip "Camp of Oppression":
  • A father of a former resident in an institution: "My son has mild cognitive impairment and OCD. He is skilled in computers, multi- lingual, We were looking for a setting; we wanted him to have outings, parties - his own social group."
  • The son: "Excuse me for interrupting, and they also hit autistics a lot. They hit. And it isn't appropriate for me there. And I had marks on my body from all the hitting." He also relates that doors are always locked behind them. "What's that about?" he asks. 
  • A brother of a resident relates his experiences: "Every sort of violence you can describe that can possibly be. It's crazy. It's prison violence. You see cuts, you see stitches, you see crazy things...I don't like the word institution. That's a euphemism for a camp of oppression."
  • Narrator: "All of the residents interviewed had lived in a succession of institutions and in various parts of the country over years and recounted a similar picture in all of them."
  • A former staff member, called Maya - but who conceals her true identity - relates: "I didn't only see one or two caregivers but rather a staff - wide atmosphere of animalism. "Go! Come here" Really like animals. They would mimic them in front of them. Tempt them with things and then not give them. I remember employees who would push really hard just to get them to move forward. They spoke to them in shouts. In my view, this pained me as a caregiver much more than the violence you hear happened once in a few months because this happens and it is clear that it happens. We had a volunteer who fed a resident her vomit from her plate because he had been instructed that she must eat...We had one resident who had outbursts, she was challenging, Several careers did find a common language with her and knew how to calm her down. She then got stuck with a violent shift worker who simply beat her to shreds.'
  • Narrator: "It's important to note that she doesn't say all the workers she met are bad or violent but not only about an isolated incident or specific staff members were involved. it is testimony about several institutions she worked in over years. conduct she encountered in several different institutions and over years."
  • The father of the adult resident later related: "When I told the institution in which my son lived that I want to bring him back home, the director threatened to bring me to court and have my guardianship status rescinded."
  • Naama Lerner of the grass roots organization, The Movement for Independence, explained that "Since the advent of privatization, operators of institutions receive between 13,000-20,000 shekels/month per resident and are thus highly motivated to retain them. They hire one carer for ten residents so they spend less than 1,000 shekels/month per resident."
On Thursday evening, February 17, 2022, people with disabilities, their families and activists demonstrated:
 
"And the Land Shouted"
Come join us to protest against the abandonment of our children, people with disabilities and cognitive disabilities, people with autism. #See them
We are shouting on behalf of those who cannot

On Saturday night, February 19, 2022, Naama Lerner of the newly formed grass-roots organization "The Movement for Independence" gave a Zoom presentation about de-institutionalization and life within the community for people with disabilities. 

It was very informative and forthright. Naama explained why life behind locked doors in large institutions is an invitation to abusive behavior towards residents. 

Several points she made:
  • When residents live in an apartment surrounded by neighbors, it is likely that signs of abuse and neglect will be noticed and reported. When those residents leave their home every day for various other settings - workplace, therapy sessions, shopping expeditions, chugim - they will be observed by myriad people who are not connected to their institution. They will not hesitate to report anything that appears concerning.
  • On the other hand, when all activities and services take place in one large, locked secluded setting, there are no outsiders who might notice disturbing signs. Institutions always defend the seclusion and locking up of residents as being "for their protection". 
  • Naama debunked that claim thoroughly.
The Kan segment included an interview with a former employee at one institution who spoke incredibly openly. She described the atmosphere of debasement/abuse that pervaded the setting. Charges, she stated, were viewed as sub-human. With incredible forthrightness, she described how she  herself was gradually infected with that attitude.  

Today,  I signed on to the Lobby for the Advancement of Equal Opportunities for People with Disabilities on the topic of The Improvement of Conditions in Hostels and the Expansion of Independent Living for People with Disabilities. It is scheduled for February 28, 2022.  

You can register for it at this link

Wednesday, February 9, 2022

Is this what it takes to move the Knesset to action?

Tommy Berchenko speaks
Yesterday, in a probable first, a citizen with severe disabilities, Tommy Berchenko, addressed the Israel Knesset's Labor and Welfare Committee

He took part in an emergency session of the Committee that deals with Israel's chronic neglect of people with disabilities at institutions.

The Committee is chaired by Efrat Rayten-Marom of the Labor Party.

Mr Berchenko spoke on behalf of Israel's "Independence" organization, headed by Na'ama Lerner. As he is non-verbal, Tommy's words (in Hebrew) were conveyed via a computer-based communications device.


The lines below are my unauthorized translation of the video (online here).
I approached the Welfare Ministry to find a living and care solution. 
They sent me to see several places. 
I saw the places. I saw that there isn't a drop of privacy. 
Your room is not your own room. Everyone can enter.
[You live] With another roommate with whom you share the cubicle. You can't host visitors. You must consider your roommate.
In one institution close to the residents' rooms are the staff offices. 
That's not privacy. 
That's not a home.
I am not prepared to live like that. 
Nobody should have to live like that.
I live in the community.
And that's impossible [for others] because [the Ministry of] Welfare doesn't have appropriate services for living within the community.
So we are forced to go into institutions.
I know that it is very difficult.
I know that we are not easy and that caring for us is complicated.
But we must think about how we can give independence to every person with disabilities and not to deny them access to the kitchen.
The kitchens in these facilities are inaccessible to people with physical disabilities.
It is simply unbelievable.
Let's now think about how to give independence to every individual with disabilities.
I myself am not prepared under any circumstances.
I will not be in an institution even if that is the last opportunity.

Monday, February 7, 2022

A press conference isn't bad - but it's not action

Cohen (R) and Lapid (L) speak to the media
February 6, 2022 [Image Source]
In the wake of the rash of violence and abuse at the Bnei Zion institution ["Again: An institution, a scandal, a petition", February 4, 2022], a press conference was held today. 

Yair Lapid, Israel's Minister of Foreign Affairs, and Meir Cohen, Minister of Welfare, both spoke.

"We don't intend to close all the institutions tomorrow morning," said Cohen. "This is accelerated process. We will limit them. But the personal choices of the families and people with disabilities will be wider."

The event coincided with the presentation of a memorandum of a new Welfare Law for People with Disabilities, and the invitation of public comments ["New bill to legally define rights, services for disabled citizens"]. Cohen said the law is expected to ease the lives of people with disabilities.

One reporter asked Minister Cohen what steps were being taken against Gidon Shalom, head of the Disabilities Administration, in reaction to his phone conversation with a distraught mother. 

I wrote about Shalom's outrageously dismissive and disrespectful response to that same woman when she  called him to report signs of abuse she had discovered on her son at B'nei Zion. That was one full year ago.

Had he acted then as his position compels him to, then the hundreds of subsequent cases of abuse could have been averted.

Yesterday, Minister Cohen answered: 

"We're looking into it. He has been summoned. I think everyone, including us, deserves several hours to check out the matters."

I would add that everyone, including us, deserves straight talk from our politicians at long last - unambiguous, free of sand in our eyes - about the end of institutionalization in Israel.  

A clear plan of action and time-line would be a good start. This conference did not deliver any of that.

Friday, February 4, 2022

Again: An institution, a scandal, a petition

Entrance to the Bnai Zion institution [Image Source
The cases of abuse in institutions for people with disabilities have been piling up in recent days. Yet another petition has been drafted (in Hebrew - it addresses the Government of Israel) and all are invited to sign on here: חתימה על מכתב לרה"מ להקמת ועדת חקירה ממלכתית על המצב במוסדות

Incredibly none of these shocking revelations has moved our government. It is hell-bent on pursuing the path of institutionalization as its first choice of care for its population with disabilities. This was evident in its recent closed-door cabinet session which resulted in yet another extravagant cash gift  [Actually, zero steps forward, January 3, 2022] to the ADI Negev institution. 

The latest abuse scandal took place in the Rosh Ha'ayin institution, B'nei Zion. The police request  to extend the remand of its suspected perpetrators claimed that the latter "physically attacked and abused the wards with disabilities together and separately and even caused injuries." 

The following was the reaction of the police representative regarding the actions of the primary suspect: 

"He allegedly committed shocking acts against the helpless. They were sexual acts, bringing lighters up close to the charges and lighting them, urinating on the charges' beds and strangulation. I have been a policeman for many years and have never before seen such acts. We watched videos and were shocked."

The administration of the institution is also under investigation since it claims to have been unaware of the hundreds of incidents of violence towards the charges although they were recorded by security cameras.

One of the many parents who visited their children after the report said: 

"This is a black day for us. My son is non-verbal and I am unable to ask him if he was beaten."

Gila Bar, whose daughter lives in B'nei Zion, added:

"Everything must be replaced here other than the social workers. Everyone else must go."

Even if you're as pessimistic as I am (and make that very), please do as I did and sign the petition linked above. It certainly can't hurt.