Last week was Purim, a Jewish holiday that celebrates the saving of the Jewish people from the genocidal Haman in the ancient Persian empire. Purim happens to be one of my favorite holidays, not least because it involves dressing up in funny costumes, performing plays that parody current events and whatever your favorite alcoholic beverageof choice is. Still, without a doubt, my favorite part of the Purim holiday is the reading of Megillat Esther (the scroll of Esther), the story of how Esther and Mordechai saved the Jewish people from Haman’s plot to wipe us out.
The story is well known to most Jews, and very enjoyable in both the hearing and the telling (though some tellings are more creative than others). My favorite part is about halfway through, when the King can’t sleep, so has one of his servants begin reading to him from the book of records (presumably with the hope that this would conk him right out – Ahasuerus is very obviously not a policy wonk). The records reflect that some years previously, Mordechai had informed the Palace of a plot by two of the King’s chamberlains to murder the King. This being behavior that royalty likes to reward (in the quite understandable hope to remain thoroughly un-murdered), the King asks, “What Honour and dignity hath been done to Mordecai for this?” and is quite shocked to discover that the answer is precisely bupkis.
Not one to let insomnia hold him back from affairs of state, the King summons Haman into his room. Haman has been loitering in the courtyard preparing to ask the King for permission to hang Mordechai, for the unpardonable crime of not bowing down to the man who would most certainly Make Shushan Great Again. This is after he has already convinced the King at the beginning of the tale to endorse a decree that marked the Jewish residents of his empire for genocide on a date he appoints. Before he can make the request to execute Mordechai in particular, however, the King queries him, “What shall be done unto the man whom the king delighteth to honour?”
Haman, being the down to earth guy that he is, thinks to himself, “Whom would the king delight to honour besides myself?” and describes his own perfect day out on the town. “For the Man Whom the king Delighteth to Honour, let royal apparel be Brought Which the king Useth to wear, and the horse That the king Rideth upon, and on Whose head a crown royal is set and let the apparel and the horse be delivered to the hand of one of the king’s most noble princes, That They may array the man Therewith Whom the king Delighteth to Honour, and cause Him to ride on horseback through the street of the city, and proclaim before him: Thus shall it be done to the man whom the king delighteth to honour!”
The King is overjoyed with Haman’s response, and immediately cries out, “Make haste, and take the apparel and the horse, as thou hast said, and do even so to Mordecai the Jew!” What followed was most definitively not Haman’s best day, as he led Mordechai through the streets, delivering to the pious and unbowed Mordechai his own lusted for ego trip.
Why do I love this story? Because it’s funny, certainly. And also because it involves an unprincipled power-seeker receiving an ironic comeuppance. Speaking as someone who works in a city filled with unprincipled power-seekers, that’s quite a draw. But there’s another reason I love it. You see, the truth is that this part of the story is unnecessary to the narrative. It’s an interlude in the larger Purim tale, which is much more about Queen Esther’s courage to use the privilege and power of her position to save her people, even at great personal risk to her life. You could tell that whole story without this amusing tale of Haman’s humiliation. Yet the Megillah includes it, and I have a theory as to why.
Megillat Esther is somewhat unique among Jewish holiday narratives in that it lacks any form of direct divine intervention. Passover comes with the Ten Plagues and the parting of the Red Sea; Shavout has the giving of the Torah at Mount Sinai. Even Hannukah, which is primarily about a secular military victory and, like Purim, is not biblical in origin, has the ‘miracle’ of the oil which lasted for eight days when only enough for one was left. Purim has no such miracles, no direct divine intervention. When the Jewish people are finally saved thanks to Esther denouncing Haman and enlisting the support of the rather flighty Ahasuerus in enabling the Jews to fight for their lives, there is no violation of the laws of nature to bring about this victory. It is a small win, and one entirely attributable to human efforts.
So also is Haman’s humiliation and Mordechai’s unwitting elevation, even if it is a sidenote in the more important story of Esther’s bravery. Indeed, this part of the story seems to be the result of neither human will or divine intervention. Instead, it’s just pure dumb luck. Events transpire in just the right way, from the King’s insomnia to Haman’s loitering in the courtyard at just the right time, to enable this cherry on the sundae of the Jews’ deliverance.
Though it is less impressive than the parting of the sea or raining down mana from above, this is much more like how we look for G-d in the modern era. The Talmud teaches us that it is forbidden to rely on miracles – that we must live our lives with the expectation that it will be our choices and our efforts that will lead to our success or failure. To sit around and wait for G-d to elevate you – or to be foolhardy with ones life in the confidence that a miracle will preserve you – is strictly prohibited. Joshua could count on G-d to halt the sun in the sky to win a battle and Moses could use the tools that G-d gave him as proof of his divine mandate. We just have to do our very bests, hoping for an outcome that will likely be indistinguishable from a lucky break.
But sometimes, despite not lounging about in expectation, we succeed against truly shocking odds. Sometimes this happens through the success of a dangerous gambit we only took because our moral obligations left us no choice, like Queen Esther risking it all to approach the King and ask for the salvation of the Jewish people. Sometimes it comes through no particular plan of ours, when a good deed from long ago comes back to reward us when we least expect it, as it did for Mordechai. In these moments, I feel the divine presence. I don’t mean it in a proselytizing sense – we Jews don’t do that, and everyone should feel free to interpret the world in the way that helps them manage life’s challenges best for them. But for me, there is something profoundly meaningful in seeing G-d when I find success despite long odds – especially when I know that any success is an interlude between past and future failures. The story of Esther serves as a bridge between the biblical age of miracles and the world we have now. In the world we live in, stuck relying on our own efforts and dumb luck to save us and those we care about, it helps a lot to feel G-d at ones back when we finally eke out a win.
Jewish Day Schools are failing youth with disabilities. It’s time to focus on inclusion – and speak out against those who assume it’s not possible
Last month, the Jewish community noted Jewish Disability Awareness and Inclusion Month (JDAIM), an annual opportunity each February for Jewish communal institutions to recommit themselves to working for the full inclusion of Jews with disabilities in all aspects of our community. Much work is needed on this issue, and recent events have convinced me that not everyone in our local Jewish community is on board with the cause.
To mark the start of the month, Rabbi Mitchel Malkus, Headmaster of DC’s prestigious Charles E Smith Jewish Day School, published a blog post on the school web page. The piece briefly noted JDAIM, before quickly shifting to making the case that parents must adjust their expectations, offering a parable of a parent who “honestly felt the school had tried too hard to keep her daughter enrolled…[and] upon reflection a few years later…realized it would have been a better choice to seek a more specialized school with specific resources.”
The Rabbi then goes on to articulate different kinds of schools that might specialize in students he is reluctant to welcome, noting that “one school may focus on students with dyslexia, ADHD, and other language-based learning differences, [while]…another school serves students with obsessive-compulsive disorder, sensory processing disorder, autism, or Asperger syndrome.” The message is clear – such students belong elsewhere, not in the hallowed halls of Rabbi Malkus’ august institution.
Of course, not every student will succeed in every school. But such lack of capacity is far from a law of physics – it is a deliberate choice, made by educational institutions when they choose to allocate funds in a way that de-prioritizes meeting the needs of disabled learners. Secular public schools face an obligation to serve students with dyslexia, ADHD, obsessive compulsive disorder, autism and other disabilities Rabbi Malkus cites in the general education classroom. They frequently do so with far lower per pupil funding than schools like JDS charge in tuition. Is the implication here that secular institutions are inherently more capable than Jewish ones in providing a high quality education? I do not believe this to be the case – instead, it’s a matter of setting priorities.
Commitment to inclusion should not be dismissed as a matter of naive ideology. We should realize the consequences of telling Jewish students with disabilities that they do not belong. Often, it means a break in Jewish continuity, with youth and families determining that if Jewish communal life has no place for them, it will not have a hold on their hearts. At best, it means a lifelong sense of looking at the Jewish community from an arms length perspective. At worst, it may mean increased vulnerability to abuse and a sub-standard education, given the evidence showing that students with all kinds of disabilities have consistently worse outcomes in segregated environments. Kicking people out of our schools doesn’t make it easier for them to have their learning needs met – it simply makes meeting those needs someone else’s problem.
It is an astonishing marker of attitudinal barriers in Jewish education that this is the message on disability that Rabbi Malkus chose to start the conversation with. For non-disabled students, one may typically assume a welcoming attitude, and approach challenges with the expectation that they can be surmounted until it becomes clear that they cannot. Rabbi Malkus’ message seems to take the opposite approach, assuming that the most relevant message his community should hear around disability inclusion is to accustom themselves to the idea that JDS may not be a place for disabled Jewish youth.
As a disability rights professional and a disabled Jew who left a Jewish Day school upon receiving one of the diagnoses Rabbi Malkus cites, I find this indicative of a broader trend in which Jewish day schools fail to see the education of students with disabilities – particularly those with significant cognitive or behavioral challenges – as within their purview.
This isn’t a new problem – in the secular world, we have a wealth of data on what happens when administrators “counsel out” families with children with disabilities from their schools from the charter school movement, whose leaders make similar statements.
The research literature on including students with disabilities in the general education classroom shows that one of the single biggest predictive factors is administrator and teacher attitudes, regardless of the severity of the child’s disability. We also know from data in the public school system that there are vast disparities between district to district and state to state as to the rate of inclusion of students with disabilities – disparities that indicate that it is political will, not level of impairment, that drive whether or not a child will be included.
No such data exists for Jewish Day Schools because we fail to collect it, though we do know that Jews with disabilities are vastly underrepresented in other youth-focused communal activities, such as summer camp. Local funders and Federation leaders should consider requiring the collection of self-reported data on disability status in local schools, camps and other programs, and making it available in a properly anonymized format in order to ensure that community members can see where different programs stand on inclusion.
Furthermore, though the Americans with Disabilities Act’s religious exemption shamefully means that schools like Charles E Smith are not bound to the same legal obligation that secular institutions with comparable resources and missions are, Federation and other philanthropic organizations should require Jewish Day Schools and other programming to commit to comparable non-discrimination protections. An independent, clearly marked process of recourse to address disputes should also be established, to make up for the courts being blocked off when the school, camp or program discriminating is religious in nature.
Rabbi Malkus’s remarks are only one sign of a much bigger problem, and work is needed to send a clear message that Jewish Day Schools are willing to welcome and work for the inclusion of all Jewish children. As the Rabbi may recall from his own rabbinic education, R. Hillel wrote in Pirkei Avot, Al Tifrosh Min Hatzibur (“Do Not Separate Yourself From the Community”). We must recall that Jews with disabilities are part of that community – and when we are relegated to separate, segregated settings, our leadership fails to live up to Jewish values.
In the BirkatHaMazon (ברכת המזון– Grace after Meals),the prayer Jews use to give thanks to G-d after meals, there exists a section known as Harachaman (הרחמן – “The Merciful One”). In it, those gathered begin by describing G-d, the aforementioned Merciful One, in various complementary terms, noting that He “shall reign over us for ever and ever…be blessed in heaven and on earth…be praised throughout all generations, glorified amongst us to all eternity, and be honored amongst us forever and ever”.
After this, in the finest of liturgical traditions, it quickly transitions over to requests. G-d is described doing many things in this section, but I would like to call attention to one line in particular:
הרחמן הוא ישבור עולנו מעל צווארנו והוא יוֹליכנו קוממיות לארצנו
The Merciful One, who will break the yoke from our neck and lead us upright to our land
I do not know precisely when this line was added to the liturgy. It was present 115 years ago, in the 1900 edition of the Authorized Daily Prayer Book of the United Hebrew Congregations of the British Empire, but 115 years is practically yesterday in Jewish history. While I couldn’t tell you the origin of the precise line, it echoes a sentiment that is present in Jewish texts as far back as Exodus and Isaiah. It articulates two things – an acknowledgement of present day degradation and a faith in eventual improvement of the Jewish people’s collective condition.
Passages like this one have always moved me, and not only as a Jew. While my work has always been secular, I’ve always perceived my relationship to my Autistic identity as similar to my relationship to my Jewish identity. When I was a teenager and autistic people talking about our own experiences was still something that professionals scoffed at, I was attracted to the incipient autistic community in part because I already knew how to survive life as a member of a minority in an often hostile world. I already knew that doing this was impossible – except by finding solace and identity with other people like me.
I bring this up not only because of my fond memories of late nights at Autreat, talking into the early hours with a group only for us to suddenly realize over half the room had more than one identity in common. I think there are things that the Autistic community can learn from the Jewish experience in exile. While there is no Autistic homeland from which we have been displaced (despite the occasional creative attempt in the early years of the Autistic community to create a fictional origin mythos), a common theme of alienation exists throughout disparate experiences of autism. Isolation from the majority culture and struggling with the difficulty of surviving a world where people like you are often reviled and rarely understood are both near universal experiences in most autistic spaces.
When I first came to the Autistic community, one of the first things I noticed was the sense of joy that came from connecting with other people like us. I cannot begin to describe the simple pleasure of being in a space where you could rock or pace back and forth, flap your hands, write instead of talk, echolaile (if there isn’t a verb form of echolalia yet, that totally should be it) wildly well beyond any intended meeting and just be okay. Those who have experienced this in their own autistic spaces need no description. It’s a feeling, a sensation, and I cannot shake the sense that it felt like home.
This was not politics – because what is politics, if not an extension of our common desperation? It existed parallel to political discourse, born of our desperate circumstances but also an escape from them. It was first and foremost community, but the longer it persisted, it began to be more than that. With the passage of the years, it became continuity, even ritual: a most delightfully autistic repetition of certain patterns of interaction over and over and over again with sublime predictability. And with that, it also became refuge.
When you feel comfortable in your own skin for the first time in your life, it can feel revolutionary. More importantly, it can make it possible to live life in the absence of revolution. Writing in their history of the first autistic-run organization, Autism Network International: The Development of a Community and Its Culture, Jim Sinclair, the founder of ANI and one of the earliest people to talk about autism in either political or cultural terms, talked about the impact of this autistic space:
Many (but, again, not all) autistic people have felt the same sense of homecoming at Autreat that characterized the early meetings of ANI members in small groups. At the first Autreat in 1996, JohnAlexis Viereck stated, “I feel as if I’m home, among my own people, for the first time. I never knew what this was until now” (personal communication). This sentiment is so widespread among regular Autreat attendees that it was addressed in an Autreat workshop comparing the autism community to a diaspora (Schwarz, 1999).
I remember feeling like this at Autreat, not only because of the difference between autistic communal norms and the broader society, but also because of the continuity represented in autistic spaces. The chance to see the same people every year, participate in the same activities, have the same experiences, go through the same process of decompression and safe equilibrium in an environment of peers. These are all things that I miss about those kinds of events.
Repetition created community. This is of course perfectly fitting for an autistic event – but it is also how community is built in any group capable of growing beyond a small group of founders. The more you do something, the more it becomes imbued with special meaning. The thing is not just itself anymore. It carries the weight of all that came before it and all that could come after.
It reminds me of going to synagogue.
It reminds me of welcoming in Shabbat.
Baruch atah adoshem alo-keinu melech haolam borei prei hagafen (Praise to you, our G-d, Sovereign of the Universe, who creates the fruit of the vine)
Baruch atah adoshem alo-keinu melech haolam al natelat yadayim (Praise to you, our G-d, Sovereign of the universe, on washing of ones hands)
Baruch atah adoshem alo-keinu melech haolam hamotzi lechem min haaretz (Praise to You, our G-d, Sovereign of the universe, who brings forth bread from the earth)
The prayers wash over me, offering more than just thanks for a meal or communication with the Almighty. They help us cross over to sacred space, sacred time. It gives us a connection to everyone else speaking or who has spoken the same words. And the sense of being at home in these moments, with continuity to past and future, can give us the strength to face an often intolerant world.
I happen to be a believer, but these moments aren’t so much about G-d as they are about the community we find with each other. I know of many Jewish atheists and agnostics who continue to find this time meaningful independent of faith in a higher power. To paraphrase an old joke, those who believe come to synagogue to talk to G-d and those who don’t come to talk to the rest of us. Both are a part of my community.
When I travel abroad, I have found great joy in going to Friday night services in new parts of the world. Jewish life is very different in many parts of Europe, for instance, where it is not uncommon for a synagogue to be hidden away or for a security guard at the door to ask you a few questions about Judaism before allowing you to enter, to screen for those seeking to do the congregation harm. Still, there are some delightful similarities. I have sang the same words from the same liturgy in Washington, Budapest, Paris, Adelaide, Jerusalem and other cities around the world. Even the differences affirm connection, because they throw into more stark relief the common root from which such divergence sprang.
When I enter Jewish space – when I have access to sacred time – I am rejuvenated and I take strength. I know from where I come and to where I can find comfort in dark times. I have a home base, a foundation, and as a Jew I know that there will always be people who will share with me the moments of sorrow and joy that both persist in the Jewish historical experience. I can have hope that the world will be better for people like me, because I am part of an unbroken chain that will continue long after I am gone.
This is essential to living life in a diaspora. It is something that I have as a Jew, and it is something that I need more of as an Autistic person.
I have probably contributed to the politicization of the Autistic community as much as anyone over the last decade. I believe that this was necessary, and that we are now far more capable of protecting ourselves and our fellow Autistic people as a result. Still, I have certain regrets.
There are some things that are lost with the shift towards politics. Clausewitz wrote that war is the continuation of politics by other means. I have never seen war, but I can attest that the inverse is most certainly true. Political life is very much akin to war, especially for a people as frequently under siege with stigma, torture and misery as the Autistic people are. And in war, people take sides and turn every part of themselves towards mobilizing for victory.
They look for any sign of disloyalty, and seek to impose discipline and a vision towards a common goal. They make heroes and villains, and leave little space for exploration, confusion or mistakes. This is understandable, but it comes with very real tradeoffs. Communities that emerge solely out of political conflict reflect the worst realities of politics – the picking sides, the use of people as tools, the constant purity tests.
Looking back on the autistic community I remember as a teenager, I recall a certain communal spirit that seems less common as we have become more political. I would like us to find a way to get it back, and I think ritual can help us do that. Sometimes it was somber, a remembrance and solidarity that I still find every year at the Disability Day of Mourning. Other times it was playful, a willingness to poke fun at ourselves or develop elaborate games around special interests, stims or echolalia.
There was also a creativity there. All of us had our own accommodation needs, and we had to navigate ways to address them on more than just an ad hoc individual basis. Accommodation and accessibility were still new-ish concepts in the autism world, and systems developed that over time were just as much collective cultural norms as they were individual promises of equal access. Some of these things persist and have acquired new life outside of their places of birth. The Color Communication Card system, first promulgated at Autreat, has become commonplace at many Autistic community gatherings and has even begunto see adoptionin the broader world.
In the last few years of Autreat, one of the things I found particularly interesting was the introduction of a new ceremony for children coming of age in the autistic community. Alliteratively called the Autreat Amazing Annual Adulthood Acclamation Ceremony, the ceremony was an opportunity for autistic young adults (and allies with a long history in Autistic community) to have their adulthood recognized and recognize mentors who had helped them in their communal experiences.
I never had the chance to participate in this as a young person, but having led one of the Acclamation ceremonies, I have a very clear memory of the meaning and power that it held for many who went through it. Like an autistic Bar or Bat Mitzvah, it affirmed the right of those who participated in it to be part of the continuity of the autistic community. I think we need more of that. More of the Autistic community’s time and energy should be given towards experimenting with these kinds of ways to build community, identity and continuity.
What comfort might it give us, to articulate words that countless others like us have said in the past and countless others may say again? To be part of an unbroken chain, reaching back from today into the far distant future? How might knowing that others before us survived them make our present struggles more bearable? How might it motivate us to further improve our condition, knowing that we can bequeath any benefits we win to those who come after us?
And how might ritual give us a chance to make promises, of what we might do and who we could be in a better world? Who among us hasn’t struggled to balance being true to ourselves with the demands of fitting in in a neurotypical world? Ritual and communal tradition does not just make living with the yoke on our necks easier – it lets us imagine a future where we stand free, and urges us to envision our lives in a world that accepts neurological diversity as natural, commonplace and respected. It can help create space for us to figure out who we might be, when a better day finally does arrive. And it lets us live with ourselves, until that day comes.
I have been playing with these ideas for a while now, mostly in my own head. It is difficult to talk about the limits of advocacy when you run an advocacy organization. 🙂 I continue to believe that the work done by ASAN and the political Autistic self-advocacy movement is indispensable. But I also know that it is not enough. We need ways to attend to each other. This isn’t giving up on politics – but it is an acknowledgement of their limits. We have other needs.
Diaspora is hard. We have to build a culture and identity that can acknowledge that while giving hope in a better future for our people. I believe this is something that may serve to unify the many kinds of autistic experience around something we can all hold precious enough to sustain us in dark moments. I hope to see more of it as the Autistic community and culture continues to be shaped and grow.