Standing At Sinai with Everyone…

I love spring. I love the warmth, the sense of new life, the sense of rebirth after the winter. But for families with kids with special needs, like mine, spring is also a time of unique challenges: lots of holidays full of potential for sensory overload; lots of end-of-the-school-year events; the school year routine changes, and summer, though optimally a time for relaxing, is often harder to negotiate even than the school year, simply because the day-to-day schedule is so different.

Spring is also a time of graduations, and new chapters for many young people. So for those of us who have children walking a different path, children who are not necessarily able to graduate and move on into new and “exciting” life chapters, it is also a bit of a mine-field socially: you are excited and happy for your friends’ kids, and you have to be adept at side-stepping the small talk at graduation parties when well-meaning acquaintances ask the regular questions: “So what are your kids up to? Where is s/he going to college? What did s/he graduate in? Does s/he have a job yet? Where is s/he going to be living after moving out?” Etc etc….

Some of you know me personally, so you know that I am a musician that wears many hats, and with one of my hats I use music to present about disability awareness and inclusion. Over the years that I have been presenting workshops and concerts, I have found myself curious about how different religious texts speak about inclusion, and I have sometimes reflected these teachings in songs. Most religious and cultural frameworks teach some form of the “golden rule”- to treat others the way one would like to be treated by others. Simple right?

As legend tells it, Rabbi Hillel, who is believed to have lived around 110 BCE – 10 CE, was asked to describe Judaism while standing on one leg, and he is purported to have said, “What is hateful to thee, do not unto thy fellow man: this is the whole Law; the rest is mere commentary, go and study.”

So, not only is it a simple rule, it’s also the most important one…but it doesn’t take much to recognize that our world is not currently functioning according to this teaching, (and maybe never did?) Certainly the judgement, disrespect and manipulative abuse of people with disabilities and special needs is only a small part of this issue.

I ask myself regularly, why can’t we just treat others the way we want to be treated? I think, quite frankly, that we all have contradictory messages in our heads. On one hand, we know that we should be tolerant and compassionate, and on the other hand, we often have subconscious fears of people who are deemed “different” than us in some ways. And when someone has a “disability” as that difference, there is a pushing away that accompanies the fear.

But where does this fear come from? Well, along with the ancient texts teaching compassion, there are also multiple texts that imply that to be different is bad.

The Jewish holiday of Shavu’ot is coming up. Shavu’ot takes place 50 days after Passover, and originally celebrated the first harvest of barley. Over the generations it has also come to be a celebration of the Jewish people receiving the Torah at Mt. Sinai. A saying in Jewish teaching is that we should always behave as though we ourselves were standing at Mt. Sinai on that day long ago, part of the crowd that was present and happily accepting the Torah as a guide for how to live.

But there is a legend, a Midrash, called, “The Miracle that Happened to the Israelites with Disabilities When the Torah Was Given.”

(Hebrew below.) The Midrash tells the following story:

Many of the Israelites present that day had disabilities, possibly as a result of the hard labor that they had been forced to do as slaves under Pharaoh in Egypt. Some of them had been hit by falling rocks that broke their hands and cut off their legs. Some of them had been blinded by being hit with something sharp while building the pyramids. Some of them had lost their hearing by….?

God saw this and said “It isn’t fitting that I will give my Torah to people with disabilities.” So, what did God do? God called to the angels to come and heal the people with disabilities.

And how do we know that they were healed? How do we know that there was no one there who was visually impaired? Because the Torah says that everyone could see the voices.
And how do we know that there was no one there who was deaf? Because the Torah says they heard God speaking.
And how do we know that there was no one there who was missing arms? Because the Torah says, “We shall do.”
And how do we know that there was no one there who was missing legs? Because the Torah says, “They stood at the foot of the mountain.”

Oh my. Perhaps whoever wrote this Midrash was someone who thought that it was a gift that the Israelites with disabilities had been healed, because they assumed that of course no one would want to have a disability. Today of course there would be a scathing argument about whether or not a disability should be healed. Let’s put that aside, because likely the intentions there were well-meaning.

But to say that God did not think it was fitting to give the Torah to those with disabilities? I don’t think so. I do think though that this attitude has made its way into our thinking, way down in the shadows, where we cannot see clearly. By reading these kinds of ancient texts we have a wonderful opportunity to bring these thoughts out of the shadows and examine them in the light of modern day thinking.

So here is my Midrash for those with disabilities who were standing at Mt. Sinai with the rest of the Jewish people, waiting to receive the Torah:

Many of the Israelites present that day had disabilities, possibly as a result of the hard labor that they had been forced to do as slaves under Pharaoh in Egypt. Some of them had been hit by falling rocks that broke their hands and cut off their legs. God saw this and said “How wonderful that my Torah will be given to all of my people. Regardless of one’s cognitive ability or physical state, the Torah shall be for everyone.”

And how do we know that even those who were visually impaired were present? Because the Torah says that everyone could see the voices.

And how do we know that even those who were deaf were there? Because the Torah says that the noise was so loud that everyone could hear.

And how do we know that even those missing arms were there? Because the Torah says that everyone will do what is needed.

And how do we know that even those missing legs were there? Because the Torah says that everyone stood at the foot of the mountain.

For this Shavu’ot, as we remember standing at Mt. Sinai, let us remember that we were all there, able bodied and not, ADD and not, Autism and not, with mental health challenges and not, etc…, and we received the Torah all together.
For this very reason, I wrote this song, Beyond The Golden Rule…the first Hebrew chorus reflects the original Torah “golden rule”, to “Love your neighbor as yourself,” but I do think we need to expand who it is we are willing to be compassionate towards, so the second Hebrew chorus says, “Love the one who is different as yourself.” And the third? “Love the stranger as yourself.”

 

 

הנס שנעשה לבעלי המום בעת מתן תורה

בשעת מתן תורה כשיצאו ישראל ממצרים היו בהן בעלי מומים מעבודת הפרך,
שהיו האבנים נופלות עליהם ושוברות את ידיהם וקוטעות את רגליהם. אמר הקב”ה,
אין זה מתאים שאתן את תורתי לבעלי מום. מה עשה? קרא למלאכי השרת,
שירדו ורפאו אותם.
ומנין שלא היו בהם עיוורים? שנאמר: וכל העם רואים את הקולות”.
ומנין שלא היו בהם חרשים? שאמרו: “נשמע”.
ומנין שלא היו בהם קטועי ידיים, גדמים? שאמרו: “נעשה”.
ומניין שלא היו בהם פסחים, נטולי רגלים מפני שנאמר: “ויתייצבו בתחתית ההר.”

In Honor of Autism Moms: Motherhood

It happens regularly: I am performing for a group of families, singing and dancing and genuinely having a great time with everyone. The room is full of children’s laughter and song and unabashed joy. Wow, I think, I have the best job in the world, playing music and making people happy.

And then there’s always one kid, with a very tight look in his/her eyes, who just seems to be on a different wave-length, not quite noticing other people’s space, not quite noticing his mom’s pinched face, not thrilled with the number of times she comes over to stop him from somersaulting off of a chair, or doing handstands in the chair, or twirling around so enthusiastically that he smashes into a little girl who was busy dancing as well. Not able to sit still, not able to find a comfortable place in the room, not quite at home in his skin…

The poor mom, I think. How can I let her know that I get it, that I see, that I know that he has Autism, that I know what life is like at home, that I know how much she wants him to have fun but how scared she is, maybe even terrified, that he will hurt someone unintentionally? I want to give her a hug, stop the music, just let her know that I for one am never going to judge her or her kid, because I have been there so many times. I do catch her eye as she careens past me to catch him before he dive bombs off of the chair, and I whisper mid-song, “It’s ok, he can move, he’s responding to the music and it’s fine.” And I do honestly mean that, because I notice how he actually is making sure that he isn’t near anyone else after he nearly knocked that other little girl over. And he is very engaged in my songs, asking me questions at appropriate moments before he dances off again.

But the poor mom. She just looks exhausted as she gives me a quick smile on the verge of tears. Is that what I looked like when my kids were younger, I wonder? I know that was what I felt like for so many years. That mixture of desire for my kid to experience the ease of childhood that other children seemed to have that eluded him on the one hand, with the terror that he would do something inappropriate, odd, and draw attention to himself and hurt someone else on the other hand. The desire to just be able to take him to the same events that other people’s kids went to, that my other kid could go to on the one hand, mixed with the fear that something was terribly amiss with my kid on the other hand. The frustration of not understanding why simple things seemed to send him into overdrive while the other kids could continue at play.

Motherhood (and fatherhood for dads as well I am sure) is a journey for everyone, no doubt. All children have their ups and downs, all children have times of more or less need, and all parents have the same. But Autism moms have a journey that is just a little different than the experience of mothering a neurotypical kid.

I have one of each…one neurotypical child, one with Autism. When our son started high school at the school our daughter had just graduated from, I told the staff that they really needed to work with us as though we were a family that they had never met, because how we parented our daughter vs. how we parented our son made it look as though there were two different sets of parents involved. In her four years at school, we were there for parent-teacher conferences and celebrations. In his four years, we were often writing daily emails, in and out of the school weekly, on the phone a few times a month. They got to know us quite well! In college, we went with her to accompany her at the beginning of freshman year, to pick her up at the end, and then for a few plays and graduation. He is in his second year at Art School, and we have already had three meetings with the Dean…. learned about policies that I never knew existed, etc.

We have many friends who no longer stay in touch with us. Might not be anything to do with being Autism parents, but on the other hand, these same friends would often comment on how intense we had become, how we seemed to have lost our zest for life, how we were really a little too involved in the parenting thing, how we were too overbearing in how we were raising our son. There wasn’t much I could say, except quietly acknowledge that they probably would never understand because they would never have to walk in my shoes. They probably didn’t know what it was like not to sleep through the night until he was six, or how just getting out of the house with everyone in one piece could be a massive energy-drain, or how every day was one of waiting for the meltdown to happen, or how a new MD would wonder why you showed signs of PTSD but had never been in active combat, or….or….or….If you have a child with Autism, you will likely have your own examples!

I can’t usually stop a performance to tell a mom that I recognize as an Autism mom that I get it and give her a hug. I also never know if her kid is diagnosed, if she would welcome the recognition, or if she is still fighting to keep that diagnosis at bay. I don’t know if I would make her feel good or devastated. I can of course just give her a smile and a hug in recognition of all that she is doing, without any specific reference to Autism, and that I do on a regular basis.

Here’s to the Autism moms and moms of kids who are the non-conformers, who don’t fit the expected molds. We are a fierce and loving bunch. We are the mama bears. We will not let someone dis our kid on the one hand, but on the other hand we work hard to keep our kids moving forward out in public. We know that society’s judgments are unfair on one hand, but we want our kids to be able to handle being in public on the other hand. We want our kids to grow up to find their way in the world, just like every mother, and we have discovered that in order for that to happen our kid might need a little different kind of parenting than the neighbor kid next door.

Here’s a virtual hug to that mom at today’s performance. And here’s a song called, “Motherhood.” A little late for Mothers’ Day, but better late than never J. This is for all moms everywhere, with a special hug for Autism moms.