Red lines and Aleh's fundraising

Screenshot from the Aleh promotional video

So take your pick. Are we progressive and enlightened toward our citizens with disabilities?

Or are we more akin to medieval?

Below I link to two video clips from opposite ends of the spectrum.

First, an Aleh production championing the institutionalization of children with disabilities through the voice of an "abled" sibling.

Here goes: 

"This is my little sister, Shira. Mommy and Daddy were so happy when they brought her home from the hospital, but as Shira grew up, Mommy began to smile with sad eyes. While Shira's friends learned to do everything by themselves, Shira needed help and so did my parents. We looked for a place nearby, a warm and homey place that would help Shira grow, where she would be loved the way we love her but taken care of in ways that we couldn't. Aleh was a perfect fit for Shira. Every time we visit her, it's clear she is learning, growing every day. We can see that she's happy there and that makes us happy too."

Honestly, using a child's sweet, endearing voice to plug the vile practice of institutionalization crosses every ethical red line. The sibling of an abandoned child is likely to be plagued by myriad complex emotions. But not one of those is examined here.

Instead, Aleh posits that a child, like the one heard here, would be relieved and happy about her sister's removal from the family home. She wouldn't agonize over whether her parents might perhaps abandon her too. She wouldn't dread that her parents might seek a "nearby, perfect fit, homey place" for her too - were she to disappoint them with less than stellar achievements the way her sister did...

And a perfectly logical fear that would be!

This clip also evades the truth when it maintains that the parents profiled had no choice but to institutionalize their child. Aleh insinuates that no alternative options existed offering her the specialized care she needed.

In reality, Israel has multiple special education schools that can advance children like "Shira". A full range of para-medical therapies, highly qualified special education teachers, bus transportation to and from those schools and a full day of classes beginning early in the morning until the evening.

Some statistics extracted (and translated by me) from a recent (June 17, 2018) Knesset report:

In the school year 2017/2018, 106,000 special needs students were registered in Israel. 45,255 studied in classes within special education schools ranging from kindergarten to post high school. Children with disabilities are entitled to an education until the age of 21. A further 60,746 children studied in special education classes situated within regular schools. A total of 10,868 classes existed for those students. Of those, 2,238 were kindergartens, 4,771 were special education classes within regular schools and 3,941 were special ed classes within special ed schools.

My daughter Chaya in her once-weekly hydrotherapy
session yesterday. It's really not that hard to quantify
therapies if you want to!

If you are still convinced that living in large, isolated closed institutions like Aleh's affords residents superior rehabilitative opportunities, remember my recent visit to Aleh Jerusalem with Knesset member Nachman Shai (see "Making history: After the raid" and "Notes from an Aleh visit"). 

I repeatedly asked our guide, a senior administrator, for the number of individualized para medical therapies offered. Each time, the guide gave me ambiguities like "It's difficult to say" and "It depends" and "We believe in group therapies". I could not elicit any numerical responses and not for lack of trying.

A strong stench of deception is wafting from that Aleh video clip.

But there is hope. Some Israelis champion true inclusion and equal rights for people with disabilities in Israel. Several of them will be competing in the upcoming World Para Swimming World Series 2019. It will be the largest to date, taking place in seven countries across four continents from February to June. 

The competition is going into its third season bringing together the world’s best swimmers in some of the biggest and most traditional events on the planet. 

Here are two of our champions who will do us proud:

Source

Notes from an Aleh visit

One of the cribs I saw at Aleh

I promised more transcribed info from my visit to Aleh Jerusalem ["Making history: After the raid"] and here it is.

Our guide was a senior staff member of Aleh Jerusalem whose position entails a variety of organizational responsibilities.

But on this particular day, what she did a lot of was "blow smoke in our eyes". Before the tour began, while we were congregated in somebody's office, she regaled us with tales of Aleh as champion of the family. I found this ironic, given that Aleh is in the business of taking children away from their families.

"We don't come to replace the family" was one of her memorable lines. "The family is an entire world" was another. "We try hard to keep contact going between residents and families", yet another.

Next, an anecdote: 

"One mother had no relationship with her son. The father was the only legal guardian. After years of efforts by Aleh's social worker, the mother finally came to visit him two years ago and now sees him - he's 21 years old - once every few weeks."

"Each family chooses what it wants and we follow its lead", we heard. Next we were told the tale of a mother who brings home her child's laundry and returns the clothes freshly washed and dried. I wondered how this devotion to her child's clothes could be relevant to her relationship with her child but didn't pursue that. 

"Every educational decision, every medical decision is reached with the involvement of the parents. We have long and meaningful dialogues and joint discussions beforehand."

Afterwards, there was prattle about parties to which parents and siblings are invited: "We want the siblings to see the positives of Aleh and not just to think of it as a hard place. It was just Chanukah, and we had a full party." Now how a "full party" differs from a "partial party" wasn't clarified. I didn't pursue that either. But it was implied that this was a significant party which somehow benefited the residents greatly.

We were then taken to the floors where the residents live. Two of the five floors are devoted to housing the 82 residents who range in age from babies to 40 years old. They were housed three or four to a bedroom and at 12:45 pm we found many in their cribs. Yes, even the young adults are relegated to cribs.

In one room, three of the four were wide awake and one, who was sitting up, smiled warmly when I approached and spoke to him. Why they were in bed - and our guide told us activities would not resume until 4 pm - is anyone's guess. We were told that normally they are put to bed slightly later but that because this was a fast day - it was the 10th of Tevet - the schedule had been slightly altered. Again, the connection between the two is anyone's guess.

I was particularly interested in learning how much para-medical therapy each resident receives. Therapies are a basic need for those with severe disabilities - precisely the population that Aleh invites. (Nearly all of the 82 residents are wheelchair bound, the guide told us). 

Many years ago, my daughter's physiotherapist told me that "therapy is oxygen for these children". And as I have learned from experience, the more severe the disabilities, the more crucial is individualized, intensive input of private therapy sessions.

But extracting information about such therapies proved challenging. Or, rather, impossible.

So, for example, when we visited the beautiful new therapy pool - empty - I asked how many times the residents receive hydrotherapy. The answer: "Once a week; once a fortnight. It's a relatively new pool. Just opened this year. The problem is with the logistics". 

I raised it again a few minutes later and was told: "Once a fortnight - or once a week". 

When I asked about the pool being open in the afternoons for a fee, she told me "Yes, it's open to the public." Apparently no logistics problem in the "for-profit" context.

I then pursued the question of other para-medical therapies, namely physiotherapy, occupational therapy and speech therapy. After getting a general answer, "It depends on the child", I pressed for a range of numbers of therapies or for the number that a typical child would receive. Still stone-walled. "It's very difficult to say. Because it's very dependent on the specific child" was her response, adding, "We very much believe in group therapies. For example, the physiotherapist works with groups. And the occupational therapist as well. If there's a specific child who needs something specific then, yes. Everybody with his own needs. That's why it's so hard to say. With physiotherapy there are those who receive it four times a day". 

I interjected, "Oh, you mean the respiratory physiotherapy?" It had been mentioned earlier. The guide said, "Yes, the respiratory physio." She reiterated: "That's why it varies a lot."

Now for those who are unfamiliar with it, respiratory physiotherapy is primarily concerned with developing, maintaining and restoring an individual's maximum movement and functional ability. In patients with respiratory conditions, physiotherapy includes, but is not limited to, chest physiotherapy or clearance of secretions, and breathing exercises. 

It is by no means the physiotherapy that children with functional disabilities, children unable to walk, stand or sit independently, need in order to progress. It is simply administered to keep the patient breathing.

Realizing that our guide may have been referring only to resident children, I asked about therapies for the young adults. They have a "different program", she said. "They get a combination of work and social activities. The work session is two hours long and its nature depends on the individual capabilities of each resident. They work with paper, clay, etc. It is very much personally adapted." 

As for therapies, "We try to weave them into the daily program, for instance, the walking." 

Well, you have to hand it to our guide: she's a champion waffler.

Coming up: the results of a follow-up phone call to that guide in which I try to elicit specific answers about therapies in Aleh.