Friday, October 20, 2017

The Best Bar Mitzvah Boy

Todd Drezner

Dov and Sam | Photo © Brad Alpernin
[image: Two white Jewish pre-teen boys, wearing suit jackets and ties
at their Bar Mitzvah service, posing together and smiling for the camera.]  
We told our son Sam that there is no applause at Bar Mitzvah services. But when he finished his speech, a wave of clapping and cheering burst forth from the crowd—a genuine display of emotion that no religious custom could have stopped.

There was a lot of feeling behind that applause. Love, certainly. Appreciation of a job well done. But also amazement. It’s probably safe to say that not everyone in attendance had expected to see what they’d just seen. And here is where the story gets interesting.

But first some background. A Jewish boy becomes a Bar Mitzvah when he turns 13 (a Jewish girl becomes a Bat Mitzvah). Traditionally, the Bar Mitzvah leads a Shabbat (Sabbath) service, the heart of which is when he chants from the Torah (one of the five books of the Old Testament).

As anyone who’s ever done it can tell you, reading from the Torah is tricky, even if you’re fluent in Hebrew. Unlike standard written Hebrew, the Hebrew of the Torah has no vowels. Without them, you can’t know simply by looking at the words how they’re pronounced, or in some cases what words they are. Thus, the only way for a 13-year-old to “read” the Torah is really to memorize it.

But even if you’ve done that, you’re still not done. Because the Torah is not just read, but rather chanted using a complicated melody with origins going back centuries. Again, the best way to do it is to memorize it. And it helps if you can sing.

If you were to design a kid with the characteristics needed to perform well under these circumstances, you would probably wind up with someone very much like Sam. He can recite entire Pixar movies from memory, along with various Kristen Wiig sketches, iPad puppet shows of his own creation, and conversations that happened years ago. Five minutes of Torah was a breeze.

Then, too, Sam has perfect pitch and is a great mimic: he can even match pitch with our bathroom fan and tell when it’s malfunctioning. Once he heard the Torah portion chanted correctly, he was able to chant it note-perfectly.

So my wife and I were confident that when it came to the heart of the Shabbat service, Sam would be in good shape. But still, it would not necessarily be easy. Sam had no real experience speaking in front of a large group. He has significant anxiety. His focus and attention can wander easily, and it wasn’t clear how well he could maintain his concentration over a 90-minute service.

But my wife and I knew that when we set a goal for Sam—or he set one for himself—he could achieve it as long as he had the necessary support. The key was to start early, and to find people who could help Sam learn what we knew he could learn.

Fortunately, there were lots of people who could help.  Most important was the fact that Sam would share the service with his cousin Dov, who lives with my sister and her husband a mile away from us in Brooklyn. From the time they were toddlers, my typically-developing nephew was a bit of a Sam Whisperer. When they were two, he would look over at Sam in his car seat, turn back to us, and say matter of factly, “Sam’s not talkin'.”

And ever since then, Dov has been exquisitely sensitive to Sam, knowing not only when talking was too much, but also how to draw Sam out of himself and into the world. Having Dov co-lead the service meant that Sam wouldn’t have to do everything. More important, there would be someone there whom Sam loved and trusted, and who could gently direct his attention to where it needed to be. Of course, my nephew had his own Torah portion to learn and speech to give, but the kid is talented. And he had backup from his younger sister, Sam’s other cousin, who’s also deeply practiced in the ways of Sam, and was sitting in the front row. They were our aces in the hole.

So we were confident Sam could do his part to lead the service. But would it mean anything to him? With all the logistics that come with raising an autistic kid—finding the right school, setting up therapy appointments and swim lessons, building a community that would love and support Sam as he is—we had neglected the small matter of providing Sam with a formal religious education.  We observed major Jewish holidays and occasionally went to synagogue, but to the extent that Judaism is the story of a people, it was a story Sam didn’t know.

Fortunately, a member of our synagogue had a lot of experience providing Bar Mitzvah tutoring to kids with disabilities. We went out for coffee with him. “A lot of parents tell me they don’t think their kid will be able to do it,” he told us. Knowing a set-up when I heard one, I joked, “I don’t think our kid will be able to do it.”

But, as we already knew, he could. Sam and his tutor started meeting in March of 2015, a full two-and-a-half years before the scheduled Bar Mitzvah service. Together, using unusual combinations of action figures from Frozen, Monsters Inc., and The Incredibles, they acted out stories from the Bible, a process they would use to make their way through most of the Old Testament by the time of the service. Sam is not a rabbinical scholar, but he now knows his Abrahams, Isaacs, & Jacobs, and his Sarahs, Rebeccas, Rachels, & Leahs.

And the tutor started teaching him Hebrew. Sam picked it up with the same hyperlexic ability that had him reading English at three years old. We were just about set.

The last element of the service was perhaps the most challenging. A Bar Mitzvah gives a “D’Var Torah,” a speech in which he’s supposed to offer an interpretation of his Torah portion. Because of Sam’s language processing delays, he would have trouble understanding his portion. And writing did not come easily to him.

Together with our rabbi, we decided that Sam would offer a few basic thoughts about his Torah portion, but would spend the bulk of his speech focusing on what he loved about his family members who were there to support him.

Though we helped him a bit with the writing and the organization of the speech, the thoughts were Sam's. We often remind others that although Sam presents as a younger child because of his language processing delays, he has as full a personality and thinking as complex as any other young teenager’s. We worked with him to help shape the thoughts we already knew were there. He spoke in an Irish accent and a French accent, to mimic characters that his beloved uncle created for him. He told his cousin that he’s loved him for as long as he can remember, “And I can remember a lot.” When he listed the reasons why he loves me, he started with, “Daddy, you do my laundry.”

Sometimes, he didn’t realize how funny he was being. (I think he’s honestly very happy that I do his laundry.) But for our guests, who had already seen him chant his Torah portion and were now laughing at every line, he was a revelation. The applause washed over him like the climax of an after-school special.

What, exactly, was that applause for? Had they doubted him? In some ways, the reaction of our guests wasn’t a surprise. I have a large extended family, and when we’re together, it’s a bit overwhelming for Sam. He tends to withdraw in those situations, and so many of our guests had only seen him spend a lot of time pacing back and forth at the edges of various ballrooms. They were surprised to see him thriving as the center of attention. And even among our friends who had spent more time with Sam, the reaction tended toward amazement. Sam had outperformed expectations.

The fact is, very few people at the service understood Sam’s capabilities as well as my wife and I did. We always believed he would do well because we knew he was capable and had worked hard. But to our guests, it may have seemed like his performance came out of nowhere.

To some extent, this demonstrates the continuing thrall of the word “autism.” All of our friends and family know of our commitment to autism acceptance, and to a person, they support it. Indeed, many of them have been vital to helping us build a community that is welcoming to Sam. And yet, even having done so, they may have been surprised to see him excitedly greeting guests outside the synagogue. They may not have been prepared to see him seeking out eye contact with each person he mentioned in his speech. No one necessarily doubted an autistic person could lead a Bar Mitzvah service. But perhaps no one expected him to enjoy it so much.

As autism has become more common over the past 20-30 years, autistic people and their allies have tried to move beyond “awareness” to “acceptance.” But there’s still not a lot of talk about “joy.” Too often, there’s a misconception that acceptance means only accepting behaviors that are considered non-standard, or accepting that an autistic person may not hit the same milestones as a non-autistic one. Yet acceptance can lead to moments like Sam's Bar Mitzvah service.

Sam chanted from the Torah so well because of the strengths he derives, in part, from autism. He gave a speech about all the people he loves because they accept him as he is, rather than trying to change him. The end goal of acceptance isn’t a life that you trudge through pushing away your wish that your kid could be typical. Rather, the goal is to find the joy, and to celebrate your child, as he is.

Tuesday, October 10, 2017

Hard Truths: Disability and Poverty Go Hand in Hand

Maxfield Sparrow

Photo © *Hajee | Flickr/Creative Commons
[image: Person with black hair and a blue coat. They are holding a hand-lettered
cardboard sign over their face. Sign reads, "VERY HUNGRY PLEASE HELP!"]
I am not the only Disabled person economically struggling, as disability and poverty go hand in hand. Why is that? The answer is complex, since disability leads to poverty and poverty leads to disability. It's a vicious cycle and sometimes a downward spiral, leading people to lead lives perpetually circling the drain, always on the edge of annihilation.

Let me see if I can untangle some of it for you.

“You’re dooming yourself to a hand-to-mouth existence.”

That’s what my parents told me when I dropped out of high school. And they were right.

Well, they were half-right, anyway. I have spent the last three decades living hand to mouth, but it is not a fate that I brought upon myself. I am Autistic, but that is only part of the picture. I am multiply Disabled and the requirements and limitations of my various disabilities bounce off each other in difficult and sometimes devastating ways.

These cycles of disability and poverty can go all the way back to childhood. Starting life in poverty is an immediate disadvantage in life. That’s probably obvious, right? Less money often means poorer health coverage and poorer nutrition, which can cause additional health problems for the rest of a person’s life, even creating new disability where none was to start with.

A family without financial resources is not able to help their children launch into the world as successfully as a family that can afford to help young people with their start in life. Fewer resources mean less attention paid to mental health needs. A family with one or more disabled members will have additional costs. And expenses considered burdensome for a middle-class family can be the difference between life and death for a poor family.

A disability present from childhood can mean less access to a quality education; poverty also lowers access to such an education. Disability and poverty together can block a child’s future earning potential entirely. But the cycle of disability and poverty do not stop at childhood’s end. Nor does growing up in a middle-class home necessarily shelter a disabled adult from falling into and/or failing to climb out of poverty.

The poverty rate for disabled working-age adults in the United States is more than twice as high as for non-disabled adults in the same age range. A September 2009 Center for Economic and Poverty Research report on poverty and disability found that half of all adults who have experienced at least one year of poverty are disabled, two-thirds of those with longer periods of poverty have a disability, and people with disabilities are significantly more likely to experience homelessness, food insecurity, and inadequate health care when compared to non-disabled people with the same income.

How can it be that disabled people have more serious markers of poverty at the same income level as non-disabled people? Literally, our poverty is “more poor.” One reason is that we have higher needs than most non-disabled people. Some of us need medications or medical devices that are not covered by Medicaid or other insurance. Some of us require special diets that cost more. Some of us need apartments on the bottom floor, so we can access them, or on the top floor, to mitigate sensory sensitivities, and have to pay more for an accessible apartment (and “accessible” does not always mean the same thing from person to person, so many disabled people have access needs that are not well understood or supported, even by ADA laws meant to protect us),

A 2012 study, published by the National Disability Institute, found that 70% of people with disabilities said they “certainly or probably” could not come up with $2000 in an emergency while only 37% of people without disabilities said the same. Without a savings cushion, an annoyance becomes expensive, and an expense becomes deadly.

Not so long ago, I looked at my tax records and saw that I have a lifetime earning total of $17,358. Since that sum covers the years from 1985 through 2016, it averages to $542 per year. That’s not a lot of money.

How have I lived on an average of $542 per year? Some of that time was spent institutionalized. Much of it was spent homeless. I’ve eaten at soup kitchens and out of dumpsters. I’ve slept under bushes and in public bathrooms. I’ve escaped the heat of summer and the cold of winter in shopping malls and libraries—often even when I had a place to live, because when I have had a roof over my head, it’s often a roof that leaks. I’ve lived without heat, running water, or even panes of glass in the windows.

And much of that substandard housing was only made possible because I have been receiving Supplemental Security Income (SSI) for disability since 1994.

“So you shouldn’t have dropped out of high school,” you say. “You should work harder. You should get a better job. You should try harder. Give up that dream of supporting yourself through writing and go get a real job.”

Let me see if I can untangle some of that for you.

I was forced out of high school because no one was protecting me from severe bullying that included having rocks thrown at my head and bleach thrown on my clothes. I had books and papers stolen. Bullies slipped laxatives into my food, so I stopped eating or drinking at school. And I was pushed into isolated building niches where I was sexually molested.

This is why I am so stern about the incredible burden of bullying that Autistic students endure. Bullies stole my guaranteed education and my future earning potential from me. Bullies stole the life I might have had, and set me on this hand-to-mouth path, one I have been fighting for three decades to escape.

As I detailed in my book, The ABCs of Autism Acceptance, CBS reports that 63% of Autistic children have been bullied, and they are three times more likely to be bullied than children without autism. Time Magazine reports a 46% bullying rate for Autistic children and cites that figure as being nearly five times higher than non-autistic classmates. And the bullying Autistic students face is particularly brutal, including documented cases such as being covered in human excrement, choked and threatened with a knife, or having both hands blown off by explosives.

If we want to fight the life-long poverty so many Autists live with, we cannot ignore the role that abuse from both age peers and adults plays in setting us up for ongoing poverty, whether due to not completing our educations, or mental distress and complex PTSD from being targeted by bullies, or both.

Mental health issues are huge when it comes to keeping disabled people in poverty. Some people’s primary disability is psychiatric, while others develop psychiatric disabilities as a result of the poverty and isolation brought on by living with another disability in a society that does not adequately address the needs of disabled adults.

Those of us with developmental disabilities often have added cognitive burdens. For example, my executive dysfunction already makes it difficult for me to focus on a task. Once I am well into the task, I have strong abilities to hyperfocus—I wrote my book, No You Don’t: Essays from an Unstrange Mind, in just two weeks because I was finally living alone with no one to distract me from my work. But any distraction is fatal to my flow, and it can take me hours to get back on task.

My executive function worsens when I am sick or stressed out. Not having enough money to eat or pay my bills is incredibly stressful. That means that one of the factors that keeps me in poverty—my uneven energy and focus abilities—worsens with poverty, making me even more likely to remain in poverty once I find myself firmly wedged there. I am like a plane that keeps circling the runway because I can’t get enough power to take off and the circling is running through my fuel reserves, ensuring that my plane will never leave the tarmac.

Another disability I live with is Ehlers Danlos Syndrome (EDS), which is a connective tissue disorder that may turn out to be one of autism’s “genetic hitchhikers,” potentially occurring more often among us than in the general population. Anecdotally, a significant proportion of the Autists I know are also diagnosed with EDS or related syndromes. Having EDS has led to a range of seemingly unrelated health conditions. (Doctors have a saying, “if you can’t connect the issues, think connective tissues.”) Along with such “delights” as pelvic organ prolapse and intermittent gastroparesis, EDS has given me feet that shred and tear when I use them. After much expensive experimentation (and a lot of classes missed because my feet were so damaged I could only crawl), I found shoes that don’t damage my feet. They cost over $100 and need to be replaced every six months when I have walked holes through the soles. That’s $100 that has to come from a budget stretched so thin I regularly go days without food.

I count myself lucky, though. I know people with cerebral palsy who have to replace their shoes on a monthly basis because their gait destroys even the toughest shoes in a matter of weeks. And this is something that has to come from our budgets because Medicaid won’t pay for non-prescription clothing. And those of us living on Supplemental Social Security (SSI) are roughly 20% below the poverty threshold to start with.

The federal poverty threshold in the United States for a household of one is currently $12,060. That’s $1005 per month. Right now, I get $735 per month to live on, but starting in December the government will be holding back $73.50, leaving $661.50 per month because I earned $1229 from my writing last year—and that means I owe the government some of the SSI money it gave me. Social Security’s rules are set up to help disabled people transition from SSI to employment, but since I began writing I have learned that those rules are not as easy to live with for those trying to build their own business rather than stepping into traditional employment for others.

So why don’t I just go get a job? Yeah, I tried that. I tried it a lot. Before I finally got on SSI, I’d held 27 jobs and none of them for a full month. I work hard and learn quickly but I … well, employers have always been careful what they said when they fired me, but from what I gather, I kind of creep people out. I don’t smile at the right time. I do smile at the wrong time. I don’t respond to sudden, unexpected questions the way people expect people to respond. I’m too rule-bound (or, conversely, I break rules that “everyone knows” but were never explained to me).

My job pool was limited early on by a neurological disorder I was born with, called delayed sleep phase syndrome (DSPS). From a very early age, I had difficulty staying awake in the daytime, and was unable to sleep at night. But back then it was “diagnosed” as lazy and undisciplined. I never even knew I had a disorder until my thirties, when it shifted into a much more severe related disorder, hypernychthemeral syndrome (also known as non-24-hour sleep-wake syndrome or N24 for short) that shares many genetic markers with DSPS.

DSPS and N24 are also “genetic hitchhikers,” occurring much more frequently among Autists than in the general population. When I was exhausted or asleep in the daytime and wide awake at night, my job options were largely limited to restaurant and bar work, or night security guard.

Once I developed N24, my brain’s subjective “day” became longer than 24 hours, and my wakeful period began moving every day. Imagine if you had to go to work an hour earlier every day, until your 9 to 5 job went from a 9am start time to a 9pm start time in just a couple of weeks, and then continued to get earlier until you were arriving at work at 9am again ... but completely drained from weeks of little or no sleep. That’s what it feels like to try to function with N24.

That is why I cannot work for someone else. I can’t keep someone else’s hours because it’s as if my brain and body are living on Mars time while every employer out there has a timeclock programmed in Earth hours. Even Vocational Rehabilitation admitted that there was nothing they could do to help someone with my circadian rhythm disability.

I have estimated that Autistic people are three times more likely to have a sleep-related disorder than the general population. (I can’t cite a source for this, because I came at this number by combing through medical studies and running lots of calculations. It would take an entire paper all its own to show my work—and I might write that paper at some point.)

With an estimated prevalence of 1% in the general population and as much as 16% among adolescents (most of whom grow out of circadian disruptions by their mid twenties), Autistic rates of circadian disorders could range from 3% to as much as 48% (since many of the studies I analyzed were of youth and no one to date has studied lifespan prevalence of circadian disorders among Autists).

While I know many Autistics who have little or no circadian struggles, those of us who do experience these neurological sleep disruptions are destined to struggle with employment. Those of us with N24 tend to find employment altogether impossible. And, of course, not being able to work is a major contributor to poverty.

So it’s clear that there’s a problem with disability and poverty, but what are some solutions we can work toward?

  • Disabled people need mentors to help them navigate governmental systems. Many disabilities make it more difficult to fill out forms, make phone calls, travel to offices to meet in person, or even understand the complex legalese so much of the government information about benefits is written in. I’m not talking about payees or guardians but mentors—workers dedicated to helping disabled people to live more fully, with full agency and autonomy.
  • We need to raise the asset limits for people receiving benefits. Currently, SSI recipients are not allowed to have more than $2000 in assets. Yes, the ABLE Act increased that asset limit, but only for those with documentation of disability onset before age 26. That doesn’t help those with disabilities that occurred later in life, and it doesn’t help a lot of Autistics, even though we were born Autistic, because not all Autists can produce acceptable documentation.

    I wrestled for a while with the Social Security Administration (SSA), trying to get my benefits changed from SSI to SSDI-Adult Child. I qualify in every way, and have clear documentation of disability from age 17, but the SSA repeatedly refused to accept that my institutionalization —for the same disability I was later awarded SSI for—counts as evidence. I finally gave up the fight through sheer exhaustion. I could not find a lawyer to represent my case because I am poor, plus switching from SSI to SSDI would not create a back payment to pay the lawyer with.

    Because of that battle, I have not even bothered to see if I could get an ABLE account. (See my point above about Disabled people needing a mentor to help them navigate these shark-infested waters of government benefits.) I am assuming the answer would be “no.”
  • Reform the work rules to make it easier for Disabled people to earn money and eventually transition out of poverty.
  • Raise the SSI amount to the poverty threshold. It is scandalous that SSI recipients are expected to live in poverty, since the program is specifically designed for those who cannot work. The most recent report (2007) showed that only 19.5% of people on SSDI, and 12.6% of people on SSI, worked in that year. Only 2.9% of disability beneficiaries earned income at the poverty threshold or above in that year.
  • Support more job opportunities for disabled people. Work programs for Autistic people should not be limited to tech jobs, as those only target a narrow slice of the Autistic population. Encourage supported work in the community rather than sheltered workshops. Encourage programs for Autistics to start and build their own businesses. Support programs that offer legitimate opportunities for Autistics to work from home. Create mentorship programs to help Autistics who have never created a resume or CV, have never gone on a professional job interview, and are lost when it comes to the networking that is so crucial for many careers.
  • Support affordable housing for disabled people in the community that are not institutions or group homes.
  • Help eliminate “food deserts,” those communities where it is impossible or very difficult for those with limited mobility or transportation resources to access healthy food for reasonable prices.

The list of what we Autistics specifically and Disabled people in general need is overwhelming. And this is a bare bones list, just a starting point. What we really need is huge: a complete overhaul in how society views us.

Until we achieve that shift in social perspective, let’s start chipping away at the barriers. Write letters and make phone calls—not just to politicians, but to entrepreneurs and charitable organizations as well. Advocate for Disabled people’s unmet needs, and promote that social shift at the same time, as and how you can.

Stop people when they talk about “moochers” and “welfare leeches” because that kind of talk primarily hurts disabled people. Seventy-five percent of food stamp recipients are families with dependent children. Twenty-five percent of food stamp recipients are elderly or disabled. Allowing gripes about “people who don’t want to work” to go unanswered adds to the stigma that keeps disabled people in poverty.

We are counting on you to help. Disabled people can’t fight this battle—a fight for our lives!—alone.