By: Ari Ne'eman, Autistic Self Advocacy Network
Tzedekah is an interesting word. Often misunderstood as meaning charity, the term originates from the Hebrew root Tzedek, meaning justice. This distinction is more than just semantics – it matters tremendously. We give charity as a matter of choice. We face a solemn obligation to do justice. Choice plays no role in it. Tzedek, tzedek tirdoff, says the Torah. Justice, Justice, Shall You Pursue! We are not charged to do justice to our fellow Jew and fellow human because it is a nice thing to do – we are charged to do justice because to fail to do so is to fail in our obligations as Jews and as human beings.
But what do I mean by justice, by Tzedekah? Surely this isn’t just a question of whether or not to engage in tzedekah – that’s a pretty easy question to answer, – but how to do so properly and in what ways. Maimonides wrote about eight levels of tzedekah. The lowest, obviously, is to give unwillingly or inadequately. The highest to give in such a way as to empower the recipient to not be dependent on others. But between, several levels focused on something else entirely – the idea that tzedekah is holier and more powerful if it is given in such a way as for the recipient and the giver to be unknown to each other. Why is this? What purpose could anonymity serve? The answer is simple – Maimonides recognized something that lies at the heart of both the Jewish approach to social justice and the disability rights movement’s critique of society: too often, those who give to others do so in such a way as to be more about glorifying the giver than benefiting the recipient.
Now, you were kind enough to introduce me by a number of titles, all of which I’m proud of and worked hard for and are glad enable me to help to build a better world for my people. But I want to talk to you today, not first and foremost as a presidential appointee or the head of a national advocacy organization. I want to talk to you as a Schechter and Ramah dropout. I want to talk to you as someone who has had profoundly positive experiences with Jewish identity but, like many disabled Jews, very mixed ones with Jewish community. When I was 12, I was diagnosed as Autistic. Shortly after, I left the Solomon Schechter Day School I had been in since Kindergarten, because they were not entirely sure they wanted to serve students like me. A few years later, I found myself – like many young Jews of my age – going to summer camp, at a camp that is still praised and admired for its “inclusion program” offering disabled campers an opportunity to attend the same camp as our non-disabled peers.
My recollections of my time there were very different – I remember a separate bunk and separate programming, with the opportunity to participate in general activities and prayers held out as a special reward to be earned by good behavior. We were at the same camp, but none of us considered ourselves included.
I don’t think either of these experiences were inclusion, though one loudly trumpeted itself as such. We often talk about inclusion in both the Jewish and disability worlds – and I sometimes want to tell some of those who use the term, “I do not think it means what you think it means.” People are taught to think about inclusion as solely a question of geography – when in reality, it is about far more.
Yes, you cannot be included if you are not welcome inside the same school or camp or synagogue as any other, but you also are not included if your participation there is a matter of charity rather than one of right. Inclusion cannot come in a special program only for people with disabilities – the nature of the term is to be allowed in by the same door, with the same rights as any other participant. Some students will require a ramp to enter a schoolbuilding. Some campers will need a shadow to help them participate more fully in camp activities. Some will need modifications to the curriculum. We make adjustments and accommodations, we add services and we individualize programs as necessary – but the point of what we are doing is not to create something special – it is to create something equal. Justice, not Charity.
The issues don’t end at childhood either. Today, over a quarter million disabled people are in segregated sheltered workshops where a provision of the Fair Labor Standards Act applying only to people with disabilities allows them to be paid less than minimum wage. Many adults with disabilities are funneled into houses and apartments owned by service-providers, meaning that those who want to receive services from another agency are forced to move. To our shame, some of these programs are run by Jewish organizations.
Inclusion is also about attitudes, and I think we need a dialogue here as well. A few years ago, I visited a friend’s shul and was initially very pleased to see a dvar torah focused on disability. The parsha was focused on Moses’ experience with the burning bush. It’s a familiar story. G-d says to Moses to go down to Egypt to demand freedom from slavery for the Jewish people, Moses tries to refuse, saying, “I am not a man of words, I am slow of speech.” G-d finally tells Moses, “Bring your brother, he will be your spokesperson!” I’ve always liked this verse – it is a valuable reminder that not being able to speak well is not the same as not being able to communicate or even take a leadership role is important.
Unfortunately, the Rabbi delivering the dvar torah had a somewhat different interpretation. “Aaron’s selection,” he proclaimed, “is a reminder to us all to advocate on behalf of those who cannot advocate for themselves.”
Moses – the greatest of the prophets – is someone who cannot advocate for himself! How deep does the presumption of inability go, that when we combine disability and Moses we get this? My disappointment isn’t so much about what was said – it is about the lost opportunity for what could have been said. There are a great many who cannot speak – and Aaron’s appointment as a disability support for Moses should teach us about the importance of giving people alternative means of communication. Not being able to talk does not mean not having anything to say. And for those who struggle to find any form of functional communication, we can still recognize self-advocacy.
There is reason for hope, however. In the last several decades, we have made immense progress in the disability rights movement. In the last fifty years, we have closed over 150 institutions for people with intellectual and developmental disabilities and shifted funding and resources into the community. Today, 13 states have no large state-run institutions and a smaller number have eliminated institutionalization for people with intellectual and developmental disabilities altogether. In 2009, Assistant Attorney General Tom Perez, the Obama administration’s top civil rights enforcer, stated in his first remarks in his new position, “Segregating people with disabilities in institutions is as wrong as segregating African-American children in inferior schools.” That is a potent statement that disability rights are civil rights are human rights are equal rights. As Jews, we should be flocking to this movement.
The time has come for us to take the progress of the disability rights movement to date and ask, “How do we keep it going? How can the Jewish community be a force for inclusion both for its own members and communal institutions but also for society writ large?” Let’s not be satisfied by creating inclusion programs – let’s create inclusive practices in the Jewish community. No Jew should be turned away from a Jewish school or synagogue or summer camp because of their disability.
And once there, no Jew should ever have reason to doubt their presence in the Jewish community not as a matter of charity but as one of rights and of justice. It is a shameful thing to have to speak of, but the Americans with Disabilities Act, which since 1990 has imposed non-discrimination and accommodation obligations on secular business and non-profits, does not apply to Jewish settings. There is a “religious exemption”, which encompasses not only our synagogues and rabbinical schools, but also our day schools and summer camps. We hold the Jewish community to a lower standard today than we do society writ large – that is backwards, we should be holding ourselves to a higher standard.
And as we put our own house in order, I ask that we play a role in the broader disability rights movement. That we see that inclusion and self-determination are Jewish values. You know, the institution and sheltered workshop industry have some of the most expensive and powerful lobbyists in Washington on their side. If we’re going to make the progress that has to be made, we need your help, we need you to get involved.
"Lo alecha hamlacha ligmor, v'lo atah ben chorin lehitbatel mimena”
“It is not your duty to complete the work, yet neither are you free to abstain from it."
Our job does not end tomorrow or at the end of February – it is a yearlong and constant obligation, as has the Jewish community’s participation in past civil rights movements been before us. Our community is at its best when we are engaged in great and grand causes – from fighting against racial segregation or in support of the liberation of Soviet Jewry, we have always been at our best when fighting in support of the highest form of tzedekah – empowering people and communities to be included and control their own destiny. This is the goal of the disability rights movement. This is the true nature of inclusion. This - Tzedek, tzedek tirdoff! – is the meaning of tzedekah.
Thank you, and Shabbat shalom.