Are words worth the effort?

My daughter at home

I've stopped counting how many people have asked me whether we'll be sending our Chaya to Aleh, now that she is barred from the school system. I know that I needed both hands to count those well-intentioned folks. But it means many of them deem it at least reasonable and perhaps even laudable to kick our child out of her home and send her far away from her loving family.

Why do so many Israelis feel that way?

This week we raised that question with an expert in the field of alternative living options for people with disabilities. She designs projects of inclusion for people with disabilities and then presents them to the Israeli government to be considered for funding. She agreed that the Israeli mindset is backward in this realm. She warned that the status quo isn't likely to change in the near future: "Ten years from now, you'll be precisely the same activists you are today". And that only enormous, persistent efforts will effect meaningful change.

She told us how surprised she was to observe children with disabilities in depressed neighborhoods in a recent visit to the Philippines. Ironically, because of poverty and the resultant dearth of separate programs for children with disabilities, such children live amidst their families and neighbors who accept and include them seamlessly.

She related an exchange she'd had with one mother who refused to allow doctors to perform cataract surgery on her son with severe disabilities because of the risk posed by the general anesthetic he would need. "I just couldn't bear to lose him", she explained.

Why then, I asked, in our far more advanced, enlightened and affluent society, do parents willingly abandon their children to strangers?

We were all, including the expert in the room, stumped.

But rather than harp on that conundrum, she is by-passing negative public opinion and forging ahead to win funding for her relatively un-publicized programs. They will ensconce people with severe disabilities either with their families or in small group-homes in the midst of the general community.

She is convinced that parents will only consider such Aleh-alternatives for their children if they see with their own eyes that it is possible.

I, on the other hand, believe that reading about those alternatives - far more feasible for most parents than actually seeing it - can win their hearts and minds too. Prose is potent.

Moreover, the plethora of self-promotion that the Aleh network of large, closed institutions spews remains unchallenged. This  lack of counter-publicity is harmful. It entrenches the isolation, discrimination and exclusion that are the plight of people with severe disabilities in Israel.

The woman we met with promised us that she would present our Chaya as a candidate for a pilot project which would fund her therapies and care at home. We are anxiously awaiting word as to whether she's been accepted.

Al-chet

The picture: Explanation below

At the insistence of my husband and the social worker at my daughter's school, I visited a Jerusalem day center for adults with severe disabilities recently. It's  one of three such options for that population in this city.

I had already debriefed my husband after he toured the center several weeks ago  The social worker came along as did my husband who drove us since it was just shortly after my cataract surgery. It was his second visit to the place and he had already conveyed to me in no uncertain terms the extent of its awfulness. But the idea was for me to forget all that and assess it with an open mind.

My concerted  efforts to do that were to no avail and I was, to put it delicately, shocked.  Both by what we saw and what we were told by the director.

The small room we were shown was filled with eight people lying on thin mats - women around Chaya's size and age alongside middle-aged men.

Two aides were on duty - changing the diapers and clothing, escorting to the toilet whoever is capable, and feeding two meals per day to eight entirely-dependent individuals for eight hours.

Needless to say, that is a  totally consuming burden even for skilled employees. And these aides didn't come close to that description. There was no doubt that not even on their best day could they find the time, energy or desire to do what the director maintained they do i.e. to exercise the people in their care as instructed by the physiotherapist.

Now I fully understand why the director told us that "truthful hyperbole" (to borrow a phrase from Tump's book, The Art of the Deal): Because there are only two physiotherapists for the entire center who give each person a half hour of therapy per week!

When I commiserated that her center is so budget-strapped and wouldn't it be wonderful if it were funded as generously as institutions are, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."

I argued that a generous salary would undoubtedly entice more applicants.

She disagreed. "They don't even ask about salary; just run the other way when they hear with whom they'll be working."

In any case, on both this and my husband's previous visit, the charges were sprawled  on those mattresses at 11:30am!.

And now to explain my על חטא:

On our way out of the room and contrary to my husband's explicit urgings not to, I snapped one photo of the class. After one of the aides  summoned her back into the room and "dobbed me in", the director rebuked me for invading  the privacy of the people in the photo. But when I showed it to her, she didn't demand a delete, agreed it was innocuous and in turn assuaged the aide.

I was then scolded by my husband and by the social worker who both maintained that I had, in effect, been magnanimously invited into somebody's home and had betrayed their hospitality. The director, they said, would now be suspicious that I had visited with the intention of reporting on the visit.

I apologized to everybody but nevertheless offered this contrary take:

The day centers are a service offered by our government. So why bar potential consumers from recording what's happening behind the center's closed doors? After all, the charges cared for there are incapable of relating their experiences. And our oral testimony isn't worth very much. It's so easily denied. With faces absent or blurred, where's the crime in a photograph?

Readers, please weigh in. I'd love to hear what you think.

Treats for terrorists come at a price

Security prisoners in Israel's Gilboa Prison | Image Source

[This article appeared earlier today on the Times of Israel website here.]

Earlier this week, I read [here] that the parents of Oron Shaul were incensed by the recent upgrade of prison conditions for around 3,500 Hamas terrorists. Oren, an IDF soldier killed during the 2014 Israel–Gaza conflict, was at first said by Hamas to have been taken prisoner. The terrorists then demanded a ransom to return the body to the soldier's family. The Shauls are victims of a very cruel squeeze.

The perks that incensed them include a reported increase from three to seven television channels in the convicted terrorists’  prison cells. 

There is an egregious inaccuracy in this news report which makes me wonder just how many other erroneous "facts" we are being fed by our government through the media. 

Because, the truth is that the number of TV stations permitted to security prisoners is, and has been for some time, not three but 33. Yes 33!

My husband and I learned this in June 2016 from the official spokesman for the Israel Prison Service. His assistant eventually provided us with the detailed list of specific TV stations, selected from the 33, to which security prisoners at specific prisons (the selection varies – typically about a dozen at any given prison) have access.

Some of you may be curious as to why we posed that question to the IPS spokesman in the first place. So, to clear that up, I will re-cap the activities of our child's murderer, Ahlam Tamimi,  before and since her release in the Shalit Deal five years ago.

A Hamas operative who selected Jerusalem's Sbarro restaurant as her target, Tamimi also transported the 10 kg. explosives package into Jerusalem, met up with the human bomb who transferred the package to a guitar case he slung over his shoulder. Then, disguised as tourists, the pair proceeded across downtown Jerusalem until Tamimi deposited her "weapon" at the restaurant door.

Before parting, she explicitly instructed him to wait fifteen minutes before detonating so that she could make a safe getaway. 

That evil woman now spends her days inciting others to terror. At times, she does so on well-publicized lecture tours in various Arab countries which have included Qatar, Libya, Tunisia, Lebanon, Kuwait and Yemen.

When she isn't flying freely around Arabia, she incites and inspires her fans  via her weekly Al Quds TV program "Naseem Al Ahrar" (translation: “Breezes of the Free”).

Her target audience is imprisoned Palestinian terrorists and their families and friends all of whom she claims are regular viewers. Messages, photos and video clips are relayed on the program to and from the prisoners.

We could not believe that our prison authorities would enable exposure of convicted terrorists behind Israeli bars to such blatant incitement. So we contacted its spokesman and learned that, while Al Quds is not one of the authorized TV stations, prisoners might very well be watching Tamimi's program via their smartphones. 

"Smartphones?", I asked in disbelief. The spokesperson conceded that while phones are banned in prison, officers are unable to enforce that entirely and phones are known to be smuggled in. 

OMG, I thought. That lame excuse just doesn't ring true; smartphones aren't exactly needles in a haystack. 

What does sound credible is the explanation attributed to someone who works in the system. He explained that the prison authority's policy is to appease terrorists to ensure quiet and calm. Smartphones seem to be a handy vehicle to achieve that end.

That official list of 33 TV stations came to us with this caveat:

"The stations are carefully selected and, as much as is possible, are supervised; in cases where content is tainted with incitement the matter is dealt with and the station is removed."

Hmmm. "as much as is possible"? Do the authorities manage to watch all the programs on offer on all 33 stations? Well, I suppose if they never sleep at all, perhaps... 

The bottom line is that a mass murderer of sixteen innocent Jews, including eight children - one of them our Malki -  is freely inciting terrorists incarcerated in Israel's prisons.  And as we know, Netanyahu could, if he chose to, rectify this outrageous state of affairs with the wave of his prime ministerial wand.

A bitter pill that needs an antidote

The prime minister paying a shiva call today
in Kiryat Arba [Image Source]

Here they are again: the headlines awash with prime minister Netanyahu's hard line response to the cold-blooded murder of yet another sweet, precious Jewish child, Hillel Yaffa Ariel.

I know the pain of her parents: literally. But I hope they will not be deceived by Netanyahu's visit to their home today, by his ersatz commiseration,  his assurances of harsher counter measures and his string of empty, lame cliches.

For instance:

Netanyahu, Liberman order work permits revoked for stabber’s relatives after Palestinian teen kills 13-year-old girl, call for rapid demolition of his family’s home. [Times of Israel, yesterday]

Or his utterances at today's shiva visit:

"... it reminds us once again who we are and what we are facing," Netanyahu continued. "They want to uproot us, but will deepen our roots. They will not force us out of here... acts of terror will not succeed in breaking the soul of the Jewish people and will not force Jews to abandon their homes. " [Jerusalem Post, today]

Unlike any other world leader sworn to fight Islamic terror, Netanyahu's Shalit Deal of 2011 strengthened and encouraged terrorists around the world. 1,027 of their comrades, including hundreds of cold-blooded murderers, self confessed and convicted of acts no less barbaric than the one that we are all reeling from today, were freed, many to resume their terrorist ways, just as sources within the Israeli security establishment predicted.

Never before or since has a leader of a democratic, Western state perpetrated a travesty of justice remotely as infuriating and unforgivable.

As I write this, we learn about yet another slaughter of Jews at the hands of Palestinian murderers.

No doubt Netanyahu will trot out his trusty, tough-guy speeches yet again. Perhaps even pay a condolence call to the grieving family as he did to the Ariels.

But please, let's not allow those trite promises and threats to undo his crime against humanity.

Let's bear in mind the bitter truth we learned just days ago: that Netanyahu's decision to perpetrate the Shalit Deal was politically motivated. As Zvi Hauser, former cabinet secretary to Channel 10, said in Haaretz ["Gilad Shalit Prisoner Swap Was Partly a Response to 2011 Social Protests, Ex-cabinet Secretary Says", June 25, 2016], the social justice protests of that period were endangering the prime minister's grip on power.

The vile agreement - sought by many of those protesters -  was a welcome pacifier; or in Hauser's words: "a bucket of cold water on the fire" of unrest.

It is a bitter pill to swallow when the grief is so raw. But, sadly, there is no avoiding it.

Rocky

Chaya's end of year celebration

We "celebrated" Chaya's graduation from her last year of school. Ever. (See snapshot on the right.) Our state now throws her to the wolves.

We have the choice of kicking her out of her home and plonking her in an institution - Aleh is the one that every professional we've encountered mentions as an option.

Otherwise, she is eligible to attend one of three "day centers" in Jerusalem. My husband visited two of them (the best of the three) and we can't consider those realistic options. People with profound disabilities are provided  nothing beyond very basic care by a staff of 2:10 students. Any therapies that will be offered - and some do not offer any - will be fewer than at her current school where they are 30 minutes per week per therapy. The math is disheartening.

Care to join our fight?

The Kupah (medical insurance fund) we're in offers Chaya 7-12 sessions of physiotherapy. That's per YEAR. Oh, and we forfeit that "gift" if we enroll her in one of the day centers.

Undoubtedly a grim picture. We are keen to petition the High Court for provision of the same services at home as Chaya would receive were she institutionalized. Bizchut assured me that if I could locate another four families to join our petition they would consider shouldering the cost of such an initiative.

Is there is anybody among you, readers, who has a child over the age of 21 with severe disabilities living at home? If so, do you feel entitled to therapies and care -assistance from the government? If you are up for the fight, please contact me.

And on a more upbeat note, my son forwarded this moving Washington Post photo essay of adults with developmental delays who are involved in romantic relationships.

Several years ago I wrote two articles about a Jerusalem couple with Down Syndrome who married, one before the wedding and the second, two years into their marriage. They're here and here. (Note: I used pseudonyms in the pre-marriage article.)

One small step for people with disabilities - Help make it a giant leap

A Bizchut protest event [Image Source]

I'm pleased to share that my emails, phone calls and, I confess, outright nagging, finally bore fruit. I was provided a written statement by Bizchut, The Israel Human Rights Center for People with Disabilities, Israel's foremost advocacy group for that population, regarding institutionalization.

The person to whom the Bizchut CEO referred me, their lobbyist, conceded that she no longer tackles public opinion. She maintained that speaking and writing about the detriments of institutions is futile and irrelevant. Instead, she  fights solely on the legislative and judicial fronts. "That's all that matters," she insisted. Change, she emphasized repeatedly, will only grace us via meetings with Knesset committee members and, petitions to the High Court.

Writing articles is pointless, she told me and, I presume, that included blogging.

Nevertheless, I intend to continue pursuing those routes. For me, the power of the pen (or the clout of the keyboard?) endures. As long as the plague of institutionalization not only persists but thrives, as long as our government generously funds those institutions and as long as public relations for institutions inundates the web -  anti-institutionalization writing can play a role.

Below is the statement which the Bizchut lobbyist sent me. (It came in Hebrew; the translation to English is mine.) She gave me carte blanche to circulate it and I urge you readers to do the same.

Every framework that contains a group of over six residents with disabilities living together, receiving all services (recreational, meals, health, work) in one place with no real contact with or full integration into the community, is an institution. 

Thus, hostels with 24 residents with disabilities are institutions. And certainly Aleh and all the other frameworks housing hundreds of residents with disabilities together in a closed place where they receive all their services is an institution.  

Bizchut's position is that integration into the community must be natural not contrived. Occasionally bringing in volunteers for chance, once-off visits or for structured encounters with the institution's residents is not integration.  

Integration is the inclusion of a person with disabilities in the fabric of normal life within the community and the getting of services in the same manner that the general population gets them in the community. Anything that does not fit this description is, by definition, an institution. 

Who may live within the community? Bizchut's position is that every person with every kind of disability and at every level of functioning is entitled to live within the community. 

Even people who function on a very low level have the right to live within the community. It is a basic right of theirs. Society must provide them full support to enable them to fulfill/realize that right safely and optimally. 

This includes people with significant physical and cognitive disabilities who need a great deal of assistance in all realms of daily life.

Amen.

VNS vacillation

M.E.D.E.K. walking: Chaya and me

Chaya's latest pressure sore is pressuring me these days. It appeared nearly healed last week but then did a 180 and looks terrible today. I texted a photo of it to our incomparably competent, reliable and kind home-visiting nurse. He works for Kupat Holim Meuhedet and, predictably, responded with revised treatment instructions (back to the Flaminal Hydro ointment). (Yes, he is a real person, not a figment of my wild imagination).

On Tuesday, he came by and diagnosed an infection. He says to continue with that ointment but warned to call him if there's fever or increased redness. (Might be a bit dicey with all those neurological fevers Chaya likes to run - they are unrelated to any infection or illness.)

Otherwise Chaya's seizure status has been pretty stable. This could be thanks to her raised cannabis dosage. Nearly a year ago. under the neurologist's instructions, we stopped raising it at 11 mg/kg/day which translated into 11 drops of oil three times a day. But at our visit to her in April, we learned that our dosage was far from the maximum. (Why had the doctor stopped at 11? I have a hunch she only prescribes the stuff and raises its dosage when parents prod her to.)

Anyway, when I suggested raising it this time, she approved. We're now at 14 drops, 3 times a day (i.e. 14 mg/kg). The doctor said that benefits peak for most patients at 15 but that 25 is considered the maximum.

True to form, I'm afflicted with a serious case of optimism again. The doctor didn't give any specifics about the rate of dosage rise so I'm just winging it. Wednesday night, C. seemed very tired and did her M.E.D.E.K. walking with her eyes closed for the first 20 minutes.

(I remember that she was also very sleepy when we first raised her to 11 drops. She gets used to the increases quickly and hasn't been sleepy since.)

At that April visit, the neurologist also pushed the VNS option. So, on Tuesday, we trekked with C. to a neurosurgeon who implants the VNS. He was very friendly and honest. Actually, to a fault (the honesty, that is. I liked the friendliness.) For instance, he told us there's no chance that the VNS would improve C.'s cognitive skills. None whatsoever. And that the assurances we were given to the contrary by the VNS distributer's nurse/salesperson were bunk. She had insisted that even where seizures remain unaffected by the device, cognitive improvement was often detected.

His honesty even included this self assessment: "I haven't got the most VNS experience in this country but I started implanting them before everyone else." Not exactly a confidence-building statement. He went on to assure us that the device was very likely to improve her seizure situation by either reducing their frequency or intensity. ("I don't quote statistics", he added.)

But then he proceeded to the risks. Since the device in C.'s chest which was implanted in December 1999 is very obsolete, the surgeon said he can't replace it by connecting the new one to the old wires. That would have been  a simple procedure done with a local anesthetic. Instead, the entire device and its wires would need to be removed and replaced - surgery that requires a general anesthetic.

Chaya's VNS device was implanted in 1999
just below her collar-bone where it's quite visible
as this snap shows.

In addition, the risks posed by the implant itself include infection in skin and even spreading to the device - which would necessitate a second operation to remove it. Oh and the risk of a stroke. He said it's never happened to any of his patients. But still, I'd say.far from confidence-building.

I then asked him for his opinion about the procedure in C.'s case. Once again he waxed honest: "It's a doable and reasonable move," he said. He added that while seizure control wouldn't improve C.'s level of functioning "since her brain is already fully developed", it would halt her decline.

The thing is, she hasn't been declining for many years. Her condition plateaued a long time ago. Which left me in serious doubt that the benefits outweigh the risks. (I actually raised that with my husband while we were in the office and he ssshhh-ed me emphatically. He doesn't want the surgeon to suspect that we're less than enthusiastic.)

The surgeon was plainly blown away by C.'s gauntness, ("She has zero skin or muscle") and said that were she able-bodied she'd have been committed to the hospital ward for anorexics. We assured him she consumes large quantities of calorie-rich food and we have no clue where it all goes. (She's on a mild version of the Modified Atkins Diet which is said to help control epilepsy.) He was as stumped as we are. He prescribed generous quantities of avocado in advance of the surgery since some fat on her bones would minimize post-op complications.

Well, that's all the VNS news for now. My husband and I have agreed to give the raised dosage of cannabis a chance before deciding about the VNS.

Oh, and when we mentioned in passing that Chaya takes cannabis, the surgeon pronounced: "I don't believe in cannabis."

We're clearly still a long way from acceptance among the medicos.