It’s the middle of the night at Stav Shaffir’s home. Stav, the firstborn, returns exhausted from yet another meeting and sits with her young sister, Shir, to assemble a jigsaw puzzle of The Jungle Book. Their parents are abroad at this moment, and for Member of Knesset Shaffir this is a perfect time to leave work outside the door and spend some precious quality time with her little sister – Shir is already 28, but in many ways she’s still a child.
Shir was born with autism and a developmental and cognitive impairment. And now, in the middle of the night, she wants to play with Stav. So Stav forgets that she is tired, that this was a long day, and that another long day, no shorter than this, awaits her, and they play.
Stav usually prefers to avoid questions about her private life, and avoids in particular any mention of Shir. This is not because she’s embarrassed of her, on the contrary: their relationship is extremely close-knitted, warm and deeply meaningful to the two of them. What drives Stav to avoid these questions, is an urge to protect her little sister from politics, from the public, and from the media. It’s as if Stav is ashamed of exposing her sister to the world of politics, and not the opposite.
Stav is not afraid of speaking her mind about any topic regarding politics, public policy, social protests and all the things that lay in between. Just not about “Shirush.” This interview would not have happened if not because of the fight she’s embarking on. In the past few months, Stav has been leading a silent fight for adults with autism and disabilities. Shir is the motivation behind this fight-more precisely, the motivation behind all of her fights.
“Who I am today is entirely because of the way we grew up”, recounts Stav. “You come to understand that it’s possible to solve almost everything simply because you have no alternative. When you go out on the street and your sister starts screaming and raving, and people around her stare at her with hostile glances, you are her protecting wall and her shield. You get used to the feeling that you must never fall. l’m really sensitive and hold things dear to my heart, but there’s no way anyone can stop me or move me out of the way when I believe that something is right. They have no chance, thanks to Shirush.”
“I’M HER WALL”
We meet not far from her parent’s house in lbn Yehuda. She’s spending there some of her time off the parliament to be with Shir. In many occasions, she moves uncomfortably and she shifts the conversation to the usual topics, those that she can recite in a minute. She then bites her lip and goes back to telling me about her special relationship with her little sister, about the complicated moments, the happy moments, the funny times. And as every family who deals with autism knows, more than once a funny story is also a story about challenges, about doubts, about scars.
“I was four when Shir was born. Already in kindergarten her teacher, who was also my teacher, told us that there were signs of slow development and sent us to make some tests. They told us she had autism in the middle of the spectrum, and a developmental and cognitive impairment. They told us she would need help on everything, that she would not be able to be independent.”
“As a child, how did you feel about this?”
“I didn’t really know what ‘normal’ siblings are, so for me this was how little siblings where supposed to be. She used to hit a lot, sometimes raged. But I didn’t have any point of comparison, only when my brother was born, and he behaved as a ‘normal’ kid, everything was a new discovery for me.”
“Did she hit you regularly?”
“Yes. You get used to it. But since our childhood we were already very good friends. We are very close. It was always like this and we continued until we were grown-ups to invent things and use our imagination together. I really loved music and learned how to play different instruments – piano, guitar, drums and others – and with the years Shir and I developed a different way to communicate through music. Shirush sings and improvises in a special language in every instrument she touches. When she has a seizure on the street, one of the most effective ways to calm her is to start singing out loud. More than once we’ve been walking on the streets and singing, almost screaming, until she smiles. I understood that she wouldn’t be able to read notes, so I invented all these methods. For example, sticking to the keys of the organ colorful stickers that represent the notes.”
That also developed your creativity.
“To be honest, it’s amazing. With autism you have to develop creative ways to communicate in their language, and not in your language. You actually have to learn how to interact in a different way.”
What do you mean, “to be a wall?”
“If you’re walking down the street, and she starts feeling anxious and behaving in a way that is not seen as ‘normative’, children would surround her, stare at her. I can’t fathom that something will happen to her. And this never ends. I will always have to be there for her. I’m always willing to be against the wall, to move mountains if necessary, everything for her.”
How’s her relationship with your little brother?
I’m 11 years older than him. She’s the older sister, and that makes it a completely different experience, because in all other aspects she’s the younger sister. They have an amazing relationship. I know that my parents wish that our life had been a bit different. And of course I know that they didn’t want any of this to fall on our shoulders, but it was obvious that we’re all part of this. That we will always be there for her. It’s a family experience where we all participate, and of course it changed and molded us.You can’t grow up in a family like that one and not develop a special sensitivity to the things that happen around you.
Were you ever angry?
My parents are the people I most admire in this world. From the moment they realized what was happening to Shirush, when they were both 28 years old, they dedicated their lives to her. All of these years they looked for things that could calm her, help her, and also tried to understand how to live. How to raise a 28 year old daughter, who is actually like a having a four year old girl, by themselves, apart from their full-time job; and at the same time giving us and her the warmth, love and support we needed. Things like this separate many families, and I can understand how it can get to that point. This strengthened us, because of my parents. When your sister doesn’t use your language, neither verbally nor emotionally, you learn to simply love and to be creative to find ways to love her and get along in life. You learn to forgive and to take responsibility.
“A BUBBLE OF PINK CHAMPAGNE”
Shaffir brought that sense of responsibility to the professional field. The willingness to forgive she left at home. She’s currently starting a fight against the government from that very same front. As with many other topics, the state has neglected the care of people with autism and developmental and cognitive impairments. Years of privatization and disintegration of the welfare services have left families helpless. Until the age of 21, the state provides various frameworks for these people. However, from the moment the child reaches adulthood, the support disappears, and families are left to their own means.
Shaffir was exposed to this unexpected distress when she tried, together with her family, to find an appropriate accommodation for Shir. A place that would nourish her, that would give order and meaning to her day-to-day, while taking her of her medical needs. Someone you can trust to take care of the person dearest to you. Institution after institution, hostel after hostel, Shaffir found one place after another were should wasn’t willing to entrust them her little sister.
“Ben Gurion’s government passed the free education bill to give every child the opportunity to succeed. They did this in a poor country, after the war, lacking resources and security – but with the vision and understanding that we need to invest in the Israeli society in order to have a country. Netanyahu’s government would have never passed a bill like this. The leadership of the Likud and the Jewish Home is living in a bubble of pink champagne and North Korean style support rallies. When was the last time they did something for Israel’s citizens?” she tells me angrily.
In an article that was published this week in Yedihot Ahronot, which recounted Stav’s surprise visits to the hostels, it was easy to spot the failures of the system: the reduction of the budget has resulted in a severe manpower shortage. This, in turn, has resulted many times in neglect; unskilled workers that don’t speak the language of the patients; a worn out staff always in rotation; and sometimes even physical neglect.
“In the past years, we went with Shir through the experience of getting to a place, understandings that it’s not good, and getting her out of there many times”, Shaffir recounts. “When I understood the scope of the problem, I started to take care of this. Taking advantage of my privilege to access public spaces as an MK, I could make surprise visits to problematic places, observe the failures, and learn. My goal is to change what’s going on there.”
You know how to raise your voice when there’s an issue close to your heart, why did you actually decide to act silently until now?
I didn’t want to get any special treatment. From the moment I entered politics, my parents have been very careful about the requests they make in the places where Shir is treated, so that no one will ever think that they feel they deserve better than anyone. I’m also really cautious about exposing her. No matter how much she was the main reason I’m here, she herself didn’t choose to be in the public spotlight.”
Has she lived in the public spotlight? Has she suffered from it?
“I’m going to give you an example. I almost always stop to speak to people that talk to me on the street, and I also like to do it. A few days ago I went for a stroll with Shirush in Netanya’s promenade, and this young guy stopped us. He said he really admired my work but that he’s heard all these different things he doesn’t even know what to believe anymore. I smiled and told him he was welcome to ask questions while we walked. Shir is not really into stopping. And then this guy started saying all these things that never happened: ‘you have an Arab terrorist boyfriend,’ ‘you don’t sign the anthem,’ ‘you’re funded by foreign donors.’ All lies.”
“I told him that those were lies, I explained the truth to him, but he wouldn’t stop. Shirush didn’t really understand what was going on, but she picked up some of the words, and she started to get mad and impatient at him. I always try to be polite, so this guy didn’t understand the situation and continued to walk behind us. I tried to respect his questions, but I felt that Shir was about to have an attack, and perceived this situation as violent. I’m supposed to be her shield, and now me, and the world I decided to be part of, are making her anxious. I tell myself many times that I’m doing this for her. For her future and for the future of all of us here. But I know she would prefer me at her side, rather that me shouting at the finance ministry.”
“THERE’S MORAL CORRUPTION HERE”
The search for the “perfect place” for Shir made Shaffir realize the situation of all those who deal with autism and development and cognitive impairments: “all the places are privatized, everything is controlled by associations or private organizations. They compete in public biddings, but the level of supervision is poor. What do inspectors see? They don’t see violence, abuse, they don’t check the quality of the care. “There are places that are literally cages. A house that looks ‘OK’ at a first glance, even good-looking, but the people that live there cannot move anywhere if the caretakers don’t open the doors for them. There’s no place to stand and to dress in the room. To go to the bathroom you need someone to open the door for you. You can’t go to the kitchen. You can’t go outside. You’re living in a prison.”
And what did they say to you in those places?
“That they have violent bursts. But living in a tight and closed space doesn’t minimize violence. In one of the places I visited yesterday, I asked one of the caretakers, when do they get out to spend some time in the sun? She responded ‘autistic people don’t enjoy sunlight.’ There’s this attitude that because some of them can’t communicate, they don’t understand. That’s not true. They understand, listen, feel. They should feel at home there. The real test of the lsraeli society is not Bibi’s Facebook page. It’s right in these places, where the invisible citizens live. There’s a direct line between the disabled that are protesting on the streets and an autistic teenager who doesn’t look at the sun, ’cause there’s not enough staff members to take her on a trip outside. Between them and the old people that are hit in nursing homes. Our country’s real challenge is to provide a safety net that ensures that if someone has a small misstep, they won’t fall completely apart.
What can you say in favor of the system?
“In the past years, we started a training program to help people to become qualified caretakers. It gives you a salary raise, and it proved to be an excellent program, but they don’t want to provide it for everyone, why? ‘Because there’s not enough money in the state’s budget.’ They asked me back then, what are, in your opinion the required standards for a hostel? I told them, it’s really simple: if you’re willing to put your brother in a place like that, then it’s meeting the standards. In most of the places you go you say to yourself: God help us, I can’t leave my sister here for even a minute. You see a place were one person, who’s earning minimum wage, is taking care of eight autistic girls and one of them defecates in her pants and no one notices it.”
“On the other hand, we have met many people that give us hope: like Adi Altshuler that founded ‘Krembo Wings;’ and Oren Alon who has a project that intends to get people with disabilities involved in the business market; even Tal Friedman, whose TV show is inspiring and life changing. There’s also the school Shir went to in Netanya, ‘Yehuda Levi,’ which found all these different ways to create meaningful experiences for the students and to make them feel like regular children. Or the managers and caretakers I met in the hostels I visited, who dedicate their lives to this occupation knowing that they won’t have any financial rewards. When I see these people, I realize that I can work at the Knesset 24/7, not sleeping, and this is still not even close to what they do everyday with their lives.”
Shaffir already turned to those in the government responsible for these services, tried to help silently, but she didn’t succeed. The things Shaffir observed during her visits didn’t impress them.”They told me, don’t worry, the people managing this are making good money. This is what the government constantly claims: they’re making a profit. It’s a lie, fake news. Actually the state, that holds the power to change this, is showing total impotence.”
During her visits, Shaffir gathered a list of demands to improve the care of people with disabilities and autism. When you hear the demands, it’s hard to believe that these conditions are not already met.
“First of all, training for all the caretakers,” she tells me, “so that they can understand their needs and know how to deal with them.” There’s also an added value to this: the training gives people tools, perspective, meaning, and helps them to commit to the job. Second, it’s also important to establish standards. Among other things, for example, to make sure that there’s always someone who speaks the language of the patient. Third, to establish rewards for the workers and give them opportunities to advance their careers. It just can’t be the case that the people that work in the hardest places, mentally and physically, earn only minimum wage.”
Isn’t this the responsibility of the providers?
“This is the government’s responsibility. We need to increase the budget. We need to differentiate between the operative budget, and the budget designated for the work itself. The director of the Welfare Ministry, who’s responsible for the people with disabilities, told me they don’t examine the budgets designated to the providers. It’s crazy. Irresponsible privatization.'”
Maybe they’ll tell you that it’s not the state’s job. Maybe there’s really no money for this.
“No. There’s an ideology behind this. The message our generation gets from the prime minister is this: say thank you that you’re alive and stay quiet. They reduce social welfare to the minimum, and they also have a method to make this smoothly. For example, they introduce fictitious regulations into the welfare budget. A regulation that allocates 40 million NIS for homeless people that is never implemented. Is this because there’s no money for this? Of course not. But no one respects what’s accorded in the budget. I will never forget how one day some Holocaust survivors came to the budget committee in the Knesset and asked for an insignificant amount of money from the state, maybe 20 million NIS. An amount that could be really life-changing for them. The MKs sat in front of the media that day and said ‘we’ll find that money.’ They didn’t give a penny. And just a minute later people from the welfare minister came and moved 11 million shekels from one place to another, the MKs didn’t even know from where or where to.”
How would you explain to middle class people that the neglect of autistic people over 21 should worry them?
“One of the ways in which they manipulate the public is to make the middle classes believe that their main problems are taxes and the price of fuel, and that apart from them there are also the weak links in society, to whom the state is doing a favor. These are not two different groups. When a disaster occurs, when you suddenly have bad luck, one of your children is born with special needs or someone in the family gets sick, this could bring a middle class family to the ground. A middle class family with an autistic kid suddenly finds itself spending all its income in their treatment; an assistant in the kindergarten, a personal tutor, travel expenses, a speech therapist. They start losing their income and they can lose their jobs. No one will help you cover those expenses, because there’s no social welfare. That’s the middle class. There are a lot of people that seem OK on the outside, but that are slowly falling apart. There’s a whole generation that’s living from the remains of a system that used to be in my place, my generation. The crisis we’re experimenting in the housing and education systems is only the beginning. At the end it’ll all collapse.'”
But why would the government want to purposely hurt the Israeli society?
This is a government whose only aim is to take care of itself. Even before the criminal corruption, there was here pervasive moral corruption. We’ve become accustomed to a government where ministers only take care of their supporters in order to be reelected. This shouldn’t be like that. Take for example what happened to the citizens of Gush Katif [a former settlement in Gaza], 400 people without a home. The money that was allocated to them hasn’t arrived yet. When I started fighting for them, all these people from the governing coalition came and told me, what do you care about them? They don’t even vote for you. For them this is how it works: I first need to find out if these people vote for me or not and then decide if I’ll fight for them. There can’t be an Israel without solidarity. The reason we give so much of ourselves to the state is because of the strength that we find in being unified. When they destroy that, when they make us fear and hate each other, they pulverize the Israeli society into pieces. This is the greatest damage that this government inflicts.”
“WE CANNOT QUIT”
Once every few minutes a passerby approaches Shaffir, compliments her, and shows her support. It’s usually young people who feel represented in the political sphere through her. “The sentence I hear the most on the street is, ‘thank for being there, just please don’t quit,'” she tells me. “We don’t have the right to renounce this place. When our grandmothers and our grandfathers created this place, they did so against all odds. Israel has a strong army, a strong economy, and strong people. We can face every challenge. We can separate from the Palestinians and keep lsrael Jewish and democratic, we can unite the different tribes of the Israeli society into one, and also invest significant resources so that every citizen will get good and effective services, and a safety net.”
Will you see things in the same light if you become a minister?
“I really want to get to a place where I can realize and fulfill these ideas,” she tells me, evading my question.
Let’s guess, the welfare ministry?
“There are many places like that, it’s not relevant to talk about specific positions. We first need to win the elections.”
But what’s your ambition?
“To have more power in our hands, so I can realize the policies I believe in. Every place I’ll get to, I’ll make a difference.”
Are you capable of being the welfare minister?
“Take a look at my work and decide yourself .”
You talk about the corruption in the right-wing government, but that’s not something that was invented in the right. Also the left, when it was in power, behaved in a similar way.
“What we see today in the Likud has not historical comparison in this country. There was never the case that almost every single person close to the Prime Minister became corrupt or was suspected of corruption. It was never the case that the MKs from the governing coalition defended corruption and tried to explain why it’s not that bad. There was never a government like this who dangerously attacked the media with lies, a government against the justice system, against the Knesset. There were many political sins in the past, part of them in my camp. But the words left and right have been desecrated here. These slogans, that suggest that everything is an attack from the left, it’s this imaginary fear, which allows the government to remain in power.”
What’s your opinion on those who are trying to change things from the inside? The “New Likudnikim,” for example.
“They’re defeatist. They actually vote for our camp, but they tell themselves from the start, ‘we already lost, so let’s try to change the other camp to make it a bit less worse.’ If we want to save the country from the hands of a corrupt government, we need to win. We need all the good forces with us.”
Why does this bother you? This doesn’t affect you.
“The way to make a difference is to become a party member. We need people that will strengthen those MKs that are working in the interest of the public, so that the party goes in the right direction. We need to build a camp from where we can fight. I go every evening to a different place in Israel to meet people, I’ve met hundreds of Israelis and I’m familiar with the feeling of frustration. You cannot win if you live with a sense of defeat. It doesn’t work that way.”
“A CHASE ON HEELS”
We go back to Shir. Every time Shaffir talks about her something changes in her. On the one hand her eyes shine; on the other, she ponders every word. Every intersection, every place where her career has taken her, her little sister was there by her side. They talk everyday, short conversations without many pleasantries – they don’t start with hello and don’t end with goodbye.
Shaffir’s friends in the social struggle know her little sister very well and she also knows them. “When we were living in tents in the summer of 2011 and I didn’t come back home, they came by surprise to the tent, brought me food and marched with me.”
Tell us about a moment from your life with her.
“Shir is a great runner, she can beat the world. She can beat Forrest Gump. A few weeks ago I met my family in Yaffo’s port and I came from work wearing heels and a formal dress. Suddenly, Shir had an impulse and started running. Usually she runs and then stops, but this time she ran in the promenade towards Bat Yam and didn’t stop. So all the family started running after her as we were. Four people running in the promenade and screaming. At the end, when we got to her, she burst into laughter, as if this was a test she made us go through.”
“When I joined the army she also wanted to. So when she became 21, after finishing her time in the school system we created, in cooperation with the army, a unit for special education teenagers, under the wing of the army. Shirush and her friends wore the uniform, volunteered, and they got simple tasks from the officers and the soldiers. Every single moment of this, of ‘being like everyone else,’ brought her great joy.”
Was there also anguish?
“In politics, at the beginning, it’s not simple. I’m really close to my family, and when I started politics I had the feeling that I was spending too much time working for the country, and not so much time helping my family. But at the end, I would have never run for the Knesset if not for Shir.”
What were the difficult moments with her?
“Together with her I discovered the crisis of our social services. At the beginning, I volunteered in a kindergarten for people with disabilities, and then in schools, and then in organizations for Holocaust survivors and the mentally disabled, and slowly you start realizing that things are crumbling. It can’t be the case that the country turns away the citizens that most need it.”
What worries you?
“Her future. How we’ll be able to continue helping her, no matter what. How to find a place where she can be happy, and where we can be calm. Generally speaking, this is not something that people with children with disabilities can imagine. You cannot be calm when you know that someone’s fate is always in your hands. You’ll never be free from it, and you and your family are alone in this story. It’s this restlessness that motives us to try to fix the things around us.”