Tag Archives: inclusion

A person’s right to fully participate in all aspects of society….

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Shepherding children to adulthood is a bit of a whirlwind. The school years are often one long race from morning ‘til night. But as any parent of both a neurotypical child and a child with autism can testify, there is great variance in the nature of whirlwinds… both my husband and I realized early on that our parenting style changes dramatically depending on which offspring we are with at any given moment.
Just a mundane example: Looking back at the 13 years that our neurotypical daughter, who is now 26, was in school, we dutifully appeared for the standard parent-teacher conferences and events where her teachers heaped praise on her. In contrast, during the 16 years that our son, who has autism and is now 24, was in school, we were there for IEP meetings multiple times per year for ongoing consultations with teachers and administrators multiple times per year, disciplinary meetings, emergency meetings, negotiations about behavior plans, and then of course those same parent-teacher meetings and events. Vive la différence! I was a virtual stranger to my daughter’s educators; I was a regular installation for my son’s.
I began my teaching career before I had children. I loved learning about the theory of multiple intelligences and different learning styles and used this information regularly as a music teacher. This background in education and child development certainly helped in parenting as well. As a disability advocate now, I often run into parents who honestly don’t know that their children’s development is different than what it should b, because they are not in a field that requires that knowledge. Having a background in education helped me identify early on that our son was wired differently, and that all those big books about the stages of child development did not actually apply. I knew we were in foreign territory, and I knew that I didn’t know what to do.
Our son is a poster child for multiple intelligences and different learning styles. I am eternally grateful for all the educators who have worked hard over the years to figure out how to reach him, encourage him and recognize his strengths. As a parent and educator in the world of special needs, I know both how difficult this can be and how essential it is. Along with these wonderful teachers though, there is sadly also an equally long list of educators who did or still do not seem to have any patience or desire to work with someone who’s learning style was or is outside of their comfort zone. Some were downright abusive, some just impatient, most (of this list) just could not figure out what his story was.
Fast forward: Our son is working very hard to finish art school, where he is studying hand-drawn animation. Art school has been an amazing blessing for our son. He has learned so much, and the school has mostly put up with his very unique learning curve. No complaints. Well…. maybe just one.
Not a complaint actually, just a plaintive wish. I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. Though there are certainly many people with autism older than my son, he is of the “tsunami” generation, when the numbers of kids diagnosed with autism exploded from 1 in 10,000 in 1970 to 1 in 1,000 in 1995…and of course the explosion has continued, because now, (depending on which office of the CDC you listen to), the numbers are either 1 in 39 or 1 in 58. The statistics for Sensory Processing Disorder are even higher, 1 in 6. Autism is no longer rare. Sensory Processing Disorder is everywhere. Mental Health departments on college campuses are expanding beyond any recognition of the mostly unused offices that they were in my time.
So, educators of any age need to know what autism looks like, beyond the dry words of description in the book. When my son verbally expressed his excitement on the first day of the semester’s drawing class, he did so in a way that seemed odd and not age-appropriate to the neurotypical professor. He then leaned over to compliment another student’s work, and the professor saw someone who didn’t seem to understand personal space. And then he dropped his metal water bottle a few times. Apparently, he also didn’t understand that the class was supposed to stand in two lines to show their work at the end of the day, and he was pacing back and forth waiting. In short, he was exhibiting signs of autism, and using strategies to help him process the sensory overload at the end of the day. And at the end of this class, as instructed by the Learning Support Office, he handed the professor his letter of accommodation explaining about his disabilities.
I only know all of this because, despite the letter, the professor reported to the department chair that he didn’t know what to do with my son because he was disruptive, and I was called in to hear that my son was being put on probation for the entire semester. What is the nature of the probation? That he is not allowed to make any noise on campus.
I am definitely convinced that the professor is doing the best he can with what he knows. I do not think bad of him. A classroom is a public space and growing up we all figure out how to conform our personal expressions in public so as to be culturally appropriate. My son needs to learn what works around neurotypical people and what doesn’t. Ableism is still around big-time. So, I’m not complaining, I’m just repeating my plaintive wish: I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. And of course, why confine this wish to educators interfacing with students? I so wish that people everywhere would have some understanding of invisible disabilities like Sensory Processing Disorder and autism.
In Item 2 of Sec. 12101 of the ADA Amendments Act of 2008, it says:
(2) in enacting the ADA, Congress recognized that physical and mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, but that people with physical or mental disabilities are frequently precluded from doing so because of prejudice, antiquated attitudes, or the failure to remove societal and institutional barriers;

 


Sigh.

https://tacanow.org/autism-statistics/
https://www.ucsf.edu/news/2013/07/107316/breakthrough-study-reveals-biological-basis-sensory-processing-disorders-kids

Thanks-giving and Compassion-giving

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Though our world and Western society are forever changing, and many people bemoan the loss of “the good old days,” the annual American tradition of Thanksgiving is coming, as it does every November in the United States. The name of the holiday serves its purpose well: to remind us to give thanks for our blessings. And in Judaism we have a wonderful “first thing in the morning” blessing of giving thanks every day… giving thanks that we woke up and can still breathe! It’s not something to be taken for granted at all … and it is easy for me to be thankful for the simple things in my life, the things that I might not pay attention to because they have always been here, such as air to breathe, water to drink, enough food to eat, clothes to wear, a roof over my head, warm clothes and a heated home in the cold season, a loving family…really I don’t actually need anything more than that, and I have so much more.

As a parent, I spent lots of years trying to teach my now young-adult children to have the perspective to be able to recognize the blessings in their own lives, to recognize that “there but for fortune” (to coin an old Phil Ochs song) their lives could be far less comfortable, and though perhaps their circumstances are less than Hollywood fantasy movie-ish, they have so much to be thankful for. Both have definitely grown to understand that, but…my youngest struggles on a daily basis to maneuver the world with autism, Sensory Processing Disorder, anxiety and severe learning challenges.

While he definitely has much to be thankful for, and certainly “there but for fortune” he would not be where he is today, it is also very true that the world he walks through is not at all the same world that I walk through. He often says to me, “You have no idea what it is like to be me.” This sentence became the title of a song that I wrote in an attempt to explain Sensory Processing Disorder to teachers and community members who do not understand the seemingly pointless melt-downs that happen in public for so many children and young adults these days.

Having a son with autism has taught me compassion on a very deep level. I do think that as a young adult I suffered from “ableist” arrogance: I was very capable academically, I could play music and sing, I could run and do athletics, I could speak and hold my own in intellectual small talk and crowd banter, I could walk through the streets of Jerusalem (my home in my twenties) and pay attention to everything that was happening, but then turn all of that stimulation off and relax at home once I got there. None of these daily activities ever crossed my mind as something that everyone couldn’t do, as something to be thankful for. In retrospect I realize how very naïve I was of course.

My son is a kinesthetic learner, and excels at his passion, drawing and animation. He is also a talented singer. But that is where the overlap between his skills and the skills I had at his age end. He struggles to retain facts taught in academic classes. He says his brain literally hurts when he is trying to memorize details. He cannot run or coordinate his body well. He cannot follow small talk on any level; growing up in an intellectual Jewish home has made him far more insecure in this area than had he grown up in a home with people who were less talkative. But more than anything, walking through the streets of Columbus, Ohio, where we live now, is one long string of stressors and fears.

Ableism and othering go hand in hand. Having been thrust into the world of special needs by virtue of my son, I have been given the gift of needing to understand the world through eyes that do not see what I see. Ableism is a word that has been coined to refer to how much of western society is structured, under the assumption that everyone has the same physical abilities, and that if you have a “disability” you are inferior. Othering is when you choose to differentiate between those you think are similar to you, in whatever way you are choosing to define yourself, and others who are different and therefore not part of your “group.” We live in a time where othering is rampant and dangerous and very much in the spotlight. Ableism is much more subtle, especially in the case of autism and Sensory Processing Disorder, which are conditions that are often invisible to the external eye.

I know that my son suffers from Sensory Processing Disorder and I can often help him through overload. But what about the person on the street who is clearly having a hard time, perhaps a person on the street who does not like my bumper stickers or my political pins? I don’t know that person, but I think it is fair to say, just as my son says to me, that I have no idea what it is like to be them.

So, at this time of Thanksgiving, I am consciously saying thanks for the many blessings in my life, from the mundane to the more complex. I am also reminding myself never to assume what someone else should be thankful for, never to assume that I have any clue what someone else’s life challenges are. I am asking all of us, whoever we are, to practice a little understanding and perspective and tolerance as we enter the darkest time (season?)of the year…to bring the light of compassion and stop the practice of othering. Because, I/you have no idea what it is like to be them…

Jewish Folk Tale: The Shepherd and His Flute

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February has been designated as JDAIM, the Jewish Disability Awareness and Inclusion Month.  I have long mused how traditional Jewish folk tales and folk songs are rich with messages about inclusion, tolerance and refraining from judgement of another.  Clearly our ancestors knew that  there was room for all kinds of people in any community.  This is one of my favorite old stories.  It is here both in text and in a recording.  The recording includes a special treat that cannot be conveyed in the written piece!  Enjoy 🙂  The story can be heard online at https://www.youtube.com/watch?v=8pJ1ASMzut4

The Shepherd and His Flute – A tale of the Baal Shem Tov (Rabbi Israel ben Eliezer, 1698 –1760, Ukraine) – retold by Joanie Calem

Long ago, in a small shtetl in what is now Ukraine, where the famous Rabbi, the Ba’al Shem Tov lived, also lived a family of scholars.  The father of the family, Moshe, was the son and grandson of very respected Rabbis, and he himself was a well-respected teacher of Torah and Talmud.  And the mother, Rachel, was the daughter and granddaughter of very respected Rabbis.  Though many women of her time did not know how to read Hebrew or study the Torah, Rachel did, and she would read and study along with her husband at home.  Their home was always full of joy, full of learning, full of conversation, full of exploration, full of consideration of life and how best to live it.

Moshe and Rachel were blessed with five sons, and together they taught their sons the treasures of Torah.  When their eldest, Meir, was six years old, it was time to go to Cheder, to learn to read and write.  He said goodbye to his parents and his younger brothers, and he excitedly went off to school, eager to learn.  It was obvious right from the first day that he too would be a brilliant scholar.  He was a quick learner, and soon was able to assist the Rabbi in teaching the other boys.

Next came time for the second son, Menachem, to join his older brother in Cheder.  He too said goodbye to his parents and younger brothers, and happily joined his older brother in Cheder.  Sure enough, just as everyone expected, he was just as sharp a student as his older brother and his parents and grandparents and great grandparents.

Soon, the third son, Shmuel, was old enough to join his brothers in the Cheder.  Shmuel was a wonderful, sweet boy.  But his parents had a suspicion that he would not have the same experience in Cheder that his older brothers did.  And sure enough, as obvious as it had been that Meir and Menachem were going to grow to be brilliant scholars, it was quickly clear that Shmuel would not.  He wasn’t like his brothers: he couldn’t sit, he couldn’t learn his letters, he didn’t seem to be paying attention the way the other boys did, and he often would get up and walk over to the window, staring longingly outside at the trees and the fields and the clouds.

So Moshe and Rachel and the Cheder’s teacher realized that Cheder was not the place for Shmuel to learn and thrive and grow.  They didn’t know what to do, because all of the boys of the shtetl went to Cheder, and everyone in their family had always gone to Cheder.  But the solution came clear very quickly:  early in the morning, every day, the shtetl shepherd would come by to collect the community’s sheep and goats and cattle to take them out to the meadows and pastures around the village for the day, and then bring them back every evening.  Though Moshe and Rachel had never noticed before, Shmuel had a special friendship with the shepherd, and used to rise early every morning just to greet the man, and walk with him a bit.  Moshe and Rachel asked the shepherd if Shmuel could be his apprentice, and the shepherd was thrilled to have the young boy’s company and help.  And so , unlike his brothers and his cousins and everyone else in his family, Shmuel did not go to Cheder.  Instead, he spent every day in the fields and meadows learning how to be a shepherd.  Shmuel was thrilled.  He loved the animals, he loved being outdoors, he loved being with the shepherd, and he loved learning how to play the flute, which the shepherd taught him as they sat for many hours every day with the flocks of animals.  Shmuel always felt that he was praying as he played his flute.

In time, the two youngest brothers, Simcha and Yitzchak, were also old enough to go to Cheder, and they joined their oldest brothers, and showed that they too would soon be star scholars.  Moshe and Rachel were proud of all of their sons in Cheder, and of course loved Shmuel dearly, but worried about him in a way that they did not worry about the other four boys.

As each of the boys grew, they reached Bar Mitzvah age, and Meir, Menachem, simcha and Yitzchak all led the prayers of the congregation on their respective Bar Mitzvahs beautifully.  Shmuel did not, but instead quietly celebrated his Bar Mitzvah playing his flute in the fields.  For him, playing the flute was praying.  He always felt that he was talking with God as he played his quiet tunes.

When Shmuel was about fourteen, the old shepherd decided that it was time for him to stop going to the fields with the flocks, and Shmuel became the official shepherd for the village.  It was bitter-sweet of course for Moshe and Rachel, they were proud of their son, but it was never what they would have dreamed for one of their children.

Now, all of these years, there were two days every year when Shmuel would not take the flocks to the fields, on Rosh HaShanah and Yom Kippur.  On th.ose days, he would join his grandfathers, his father and his brothers in the synagogue, where everyone would gather to join the Baal Shem Tov in the holiday prayers.  Every year Shmuel sat quietly, unable to speak the words of the prayers, unable to read.  He loved the melodies of the community praying around him, but as the years passed, he felt sad that he couldn’t join in.

One year on Rosh HaShanah, Shmuel was sitting with his family as usual, in the midst of the prayers, and he happened to look up at the Baal Shem Tov.  As the prayers were being sung all around him, Shmuel again longed to join in.  He noticed that the Baal Shem Tov seemed to look concerned.  Shmuel sat and wondered what he could do to add his voice to the prayers of the community.  His hand went to his flute in his pocket, and at once it was obvious how he could join in.  He pulled out his flute and began to play a beautiful melody that wove harmoniously with the prayers of the congregation.  He played with all of his heart and all of his soul, so happy to finally have found a way to participate in the community.

But the community stopped their praying, and a sound of shock and horror went through the room.  Suddenly, men were shouting at Shmuel to stop, shouting at Moshe, Shmuel’s father to stop him, shouting at the Baal Shem Tov to stop him.  Moshe rose to reach out and grab Shmuel’s flute, but the Baal Shem Tov reached them first, and, putting his hands on both Moshe and Shmuel’s shoulders, the Baal Shem Tov said, “Finally, our prayers will truly reach Heaven as a full community, because Shmuel has joined us with his pure love, joy and devotion.  We needed his voice in order for God to hear all of us.  This is how he prays, and though it is different than our prayers, it is wonderful.”

The rest of the congregation bowed their heads, acknowledged their mistake, breathed deeply to accept this new idea, and after a few minutes, returned to their prayers, letting their melodies intertwine with Shmuel’s flute.

Shanah Tovah U’Metukah – Questions for the New Year

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Tonight is the beginning of the Jewish New Year, Rosh HaShanah, 5777.  In the Jewish tradition, the new year is both a time of joy and a time of introspection, a time to reflect on what we have done with our lives in the past year, acknowledge areas where we have fallen short of how we would have liked to behave, and ask ourselves questions about what we want to contribute to our world and life in the coming year.  All of this is part of doing heshbon hanefesh (חשבון הנפש), an accounting of our soul.

Naturally, we all have different expectations of ourselves, and different ways of interacting with the world.  Part of my own process of becoming a parent, 25 years ago, was having to recognize that my children would not be carbon copies of me, would have different standards and expectations for themselves, different ways of finding their way in the world.  My job would be to guide and accompany, but not to require my children to mold or conform to my world view.  Over my years of parenting that has proven to be a tad more demanding and personally challenging than I oh so glibly and philosophically thought when I first happily became pregnant!

I find that one of the most fascinating aspects to parenting has been the questions that my children have asked, and as I wear the double hat of being both a parent to my own children and a teacher to others’ children, I have had the pleasure of also fielding many other children’s questions over the years.  The questions that we ask ourselves, or that we ask our mentors/teachers/parents, are windows into our soul. So the questions that my children ask always give/gave me a clue to what is happening in their souls, what is engaging them, what is worrying them, what is occupying their hearts?

On the eve of this new year, I reflect that we live in a time of many questions!  This is election season here in the US, and what a season it is.  Full of questions!  What kind of country do we want this to be?  One of inclusion, acceptance, tolerance, flexibility, welcome?  A country that acknowledges that we don’t all have to be the same?  That we can simultaneously accept, embrace and cultivate the beauty that results from people coming from different cultural heritages?  A country committed to providing equal rights for everyone?  Or a country that reflects and embraces the alternative to these values….?  I love the bumper sticker, “Think – It’s Patriotic!”  I would add to that, “Think and Question – It’s Patriotic!”

Looking at this country, and at my home country, Israel, it feels like an impossible task to right all of the wrongs and bring to life these values that I hold close.  So I always remind myself that change begins with me, in my soul, in my home, in my work, in my world.  And what is my world?  My world is a world of music and community and autism and special people with special needs, and very piercing questions!!

Autism is a different culture than the mainstream culture.  It is one more culture that must be embraced and accepted by the mainstream culture.  While it is fairly easy to identify different ethnic cultures by an individual’s dress or skin color, autism is often not immediately recognized by the observer.

In the world of autism, there are many questions to ask.  What causes autism?  Can it be healed?  Why are there so many children with autism now?  What’s going on that the numbers keep rising?  What’s with this ongoing controversy about vaccinations?  How do we encompass people with autism?  How do we help them figure out this world?  What changes do those with “typical” neurology (is there really such a thing?) need to make in their communication styles in order to include people with sensory processing disorder and atypical neurology?  (Those are just some of my questions….I’m sure everyone reading this can add questions of their own and I invite you to do so in the comment section!)

As both an educator of people on the autism spectrum and a parent of someone on the spectrum, I have to be open to asking the unspoken questions and to conversing with my son on his questions.  Throughout the years of helping him learn to negotiate the world, he has asked questions constantly.  So many of his questions were uncomfortable to answer, because he easily notices the flaws in societal expectations of behavior!  “Mom, why can’t I show my excitement and enthusiasm?  Why do I have to be quiet?”  Ah, good point…why is excitement and enthusiasm only allowed in sports arenas and rock concerts (and some political venues at certain times), and not in learning settings, where supposedly we want to enthuse our learners?

We need to keep on asking questions, and to keep on encouraging our children and their teachers to ask questions.  My son is now at art school.  He was accepted with a scholarship because of his art abilities.  He is a talented artist.  However, he speaks in pictures, not words, and maintaining verbal and written university level standards is a tremendous challenge for him, one that is not actually attainable at this point.  So one new twist on the question that I have had to ask throughout his life is directed towards the institutions that accept students with different learning styles:  are they accepted but expected to fulfill the exact same academic standards as everyone else in the school?  Or by accepting them, does the institution recognize that they are a different type of learner and can fulfill those academic standards in a different fashion?

Ask my son a question, and let him draw you the answer.  You will receive a deep, highly nuanced, thought-provoking response, that will provide you with information to continue the conversation.  Ask him a question, and require him to answer you verbally or in writing, and you will receive a potentially confused answer that will leave you wondering how to proceed in the conversation.

As an educator, I thoroughly understand the requirement for academic institutions to maintain standards.  I also understand the ability to be flexible and encompass different learning styles and neurological brain structures.  So the question I pose myself on this eve of Rosh HaShanah is this:  how can I help explain to the world that being different is wonderful, and that reaching out to the “other” in whatever fashion that presents itself, is a welcome challenge?

Here is a song I wrote for my son’s Bar Mitzvah…..full of his questions, and our attempts at answers 🙂  He was 13 at the time, and of course his questions are now different….but many of my answers are the same.