I got caught up in a discussion this week based upon a fantastic blog post that I did not write, posted on the blog of the Ruderman family foundation, linked here. When I shared it to my Facebook page, with an exhortation for those in positions of leadership to change the exclusionary dynamic about which it was written, a friend in such a leadership position took issue with the fact that the mother in the piece had not, after all, asked for changes so that her family might be included. This point, which has a certain facial appeal, falls down, I think, when one gets into application. It’s nice that people will respond positively when asked, but I’m deeply concerned for those who don’t or can’t ask.
What of the single mother, uncomfortable and having already faced hostility from members of the congregation, as described in the post, who is afraid to address the leadership, which, might not only be imposing, but, in so many of our synagogues. is older, and/or male? What of the parent. beleaguered by a life filled with challenges, who comes to synagogue for spiritual and human support, and simply does not have it in themselves for one more confrontation? What of the parent who does not even know that their child has a diagnosis, and therefore knows no buzzwords with which to demand special treatment, but is merely looking for a place where they and their child are welcome?
What of the deaf person, seeking to attend services themselves, who, in the absence of an interpreter, or at least a person willing to look at a smart phone screen, is unable to make their wishes known? What of the person with a mobility impairment who arrives at an inaccessible front door and can’t even breach the entry to ask if there’s another pathway inside? What of the new self advocate who does not yet know exactly how to articulate his or her needs, looking for a spiritual community of support?
In the Passover Seder, as we are going through Jewish archetypes, one of the types of Jew described is the one “who does not know how to ask.” The Haggadah tells us to start for that child, making asking unnecessary.
I think that this is a powerful lesson for inclusion. Inclusion should be proactive, so that asking isn’t necessary, precisely because so many people cannot ask, or at least, facing an apparently hostile environment, will depart before ever asking.
Now, this is relatively easy when we are talking about mobility access, or even putting together a core from among the congregation that knows how to sign, or training ushers to look out for other visible disabilities and offer support, but what of behavioral disabilities?
After being told of my idea that the need to ask should be removed, my friend, mentioned above, challenged the idea that any and all behavior should be acceptable to a service leader, suggesting that the community has a right to regulate the disruptive effect of apparently aberrant behavior in the absence of a request for accommodation.
I think that this idea fails precisely because it makes inclusion dependent upon disability. Leaving aside the vagaries of misdiagnosis, and the incidence of simple failure to diagnose an unknown condition, should acceptance and inclusion really be predicated upon the ability of medical science to quantify particular behavior? The law craves such distinctions for rights to enforcement, but do we need them as we define how to welcome?
To my mind, if a service can continue with a particular behavior ongoing, (and there’s no question that the children’s behavior in the original blog post was insufficiently disruptive to derail services), then the community norm should be to accept it whether or not it comes with a diagnosis.
Isn’t a community more inclusive if we simply accept that some children (and adults) are more comfortable rocking, whether or not identified as autistic? Isn’t a community more inclusive if we accept that some people do better moving rather than sitting still, without predicating our acceptance on whether or not they have been diagnosed with an attention deficit or hyperactivity?
I reject the idea that forcing people to identify is necessary or right. Certainly, at the very least it creates awkwardness and stigma. In a worst-case scenario, it gives license to exclude from a community of support simply because someone isn’t carrying the right (metaphorical) paper. I posit that a truly inclusive community would strive to broadly accept the habits and behavior of its members, without requiring an identity of disability.
Conversely, if a particular behavior is rendering worship untenable, or dangerous, or destructive, it seems to me that the identification of a disability at the root of that behavior isn’t an argument to ignore it or blithely accept it. Under those circumstances, the goal is to find a mutually acceptable solution. Again, I’d like to imagine a world where we don’t predicate such a willingness to collaborate on a diagnosis, and I accept the fact that, if no accommodation is possible, not even the law as applied to secular organizations requires an organization to accept programmatic destruction simply because the root cause of a person’s need is a disability.
My broad point is that the identification of a disability should not be the prerequisite for being welcomed into our community, even for those who present differently than some norm. Not only would such a requirement turn certain people away at the door, and penalize others for being unaware of diagnoses, it adds an unnecessary burden to the already complex life of even those who would surely be granted accommodation on request.
If, instead, we make our communities as broadly welcoming and accessible as possible, we turn them into the places of love and support that we’ve always held them out to be. It’s a sort of universal design for an accepting and inclusive congregation. Yes, it allows people with disabilities and their parents to access our communities, but it also makes our communities open to the widest numbers of our potential fellow children of Israel, whether or not they fit these designations.
I invite all of you, clergy, lay leaders, and fellow community members to reimagine our environments from the ground up to include, rather than exclude. Let’s strive for a baseline that accepts a broad range of humans, rather than reflexively excluding those acting somewhat differently than we. Maybe then we can begin to find true inclusion.