I wrote (but didn't post) the following two weeks ago:
As my kids say, "bummer". I had a positive result on my at-home Covid rapid antigen test last night. I administered it because of fever and a cold. Now, I am a scrupulous mask wearer, a Covid recoverer, had two vaccines, scored 2,000 + on a serological antibodies test four months ago and have, to my family's chagrin, grown extremely anti-social during the last two years.
So, we're stumped as to where and how I caught this.
On the off chance that this is a false positive, I will go do a PCR test this evening.
I am particularly disappointed because the pool to which we bring Haya for hydro has been broken all week. It only recovered and reached the desired 32 degrees Celsius (about 90 Fahrenheit) this morning. I did a lot of Whatsapping to land a cancellation of one hour by one of the teachers for this morning.
So Haya will miss her hydro this week. As I have often noted: It's the highlight of her life...
Haya, in a recent drawing of mine
Since then, Haya has thankfully had two magnificent sessions of hydro. The second one was this past Sunday which we did in 30 degree (Celsius) water, instead of the usual 32 degrees. With her wetsuit on, Haya appeared as comfortable as usual. But I really missed those extra two degrees.
All the Whatsapp groups I'm in for people with disabilities and their families have been abuzz with talk of forming inspection groups. Clearly, the recent uptick in accounts of abuse in institutions here in Israel triggered that.
The idea is for those groups of volunteers to visit unannounced Israel's institutions for people with disabilities. I just volunteered for the Jerusalem area. Hopefully we will visit ADI Jerusalem and uncover whatever there is to uncover.
This time we won't be accompanied by politicians as we were the last time such visits were made ["Notes from an Aleh visit"].
My "partner" back then in 2018 was Knesset member and now Israel's Minister of Diaspora Affairs, Dr Nachman Shai, who in my opinion was utterly deceived by our guide's slick spiel. Sadly, Shai's reactions were confined to unadulterated praise.
Once again, Jordan’s King Abdullah II has cast his spell on yet another world leader. Whether it is his glibness, the impressive English, his seamless melding of East and West, it really hardly matters. He always gets what he is after.
Last week it was Israel’s Foreign Minister Yair Lapid who met with him. The public was told that the encounter was intended to reduce the likelihood of violence during the impending holiday season.
It was the second meeting the two had since the new Israeli government was formed last June. And since Jordan deigned to publicize this one – after keeping the first a secret – it was hailed by Israel’s media as a great success.
“We agreed that we must work together to calm tensions and promote understanding, particularly in the lead-up to the month of Ramadan and Passover,” Lapid said in a statement after the meeting at the Al Husseiniya Palace. “Our special relationship with the Kingdom of Jordan ensures a better future for our children, and the peace between us isn’t just good neighborliness but is also our moral responsibility to both our peoples.”
Mr. Lapid, I am both heartbroken and infuriated by your meeting last week with Jordan’s ruler. If moral responsibility is really your concern, why did you not mention to your “good neighbor” his immoral conduct towards my child’s murderer?
Why did you, and do you, consistently ignore how this leader with whom you boast of a “special relationship” refuses to abide by the kingdom’s extradition treaty with the US?
That he steadfastly rejects the U.S. demand to extradite the self-confessed mass-murderer who is one of the 25 most wanted terrorists in the world?
Our child’s blood, along with that of the fourteen other innocent victims of Tamimi’s treacherous attack on Israeli soil cries out for justice.
But you, Mr. Lapid, see fit to sing kumbaya with the one man who can hand Tamimi into the hands of the U.S. Department of Justice.
Five years ago today, on my birthday as it happens, officials of that same arm of the U.S. government met with my husband and me along with the parents of another U.S. citizen murdered by Tamimi to disclose that criminal charges against her were about to be unsealed.
They came to share this with us before the public announcement at a press conference scheduled for several hours later. I shed tears of relief then in the naive belief that the move signaled an end to Tamimi’s years of frolic since she was freed in the Shalit Deal five and a half years earlier: an end to Tamimi’s celebration of murder and to her incitement of others to emulate what she did.
The conduct of leaders both in the U.S. and Israel since that day has taught me that my belief in their sense of “moral responsibility”, to quote Mr. Lapid, was entirely unfounded. Realpolitik and personal advancement are what motivate them.
And so, my dear Malki, I am sorry but one more year has passed with your murderer still free, still protected, still unrestrained.
[A version of this post initially appeared in Times of Israel]
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.
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.
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.
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.
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.
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.
