I have been doing some hard thinking lately about what’s next for A. Just in general, but also specifically about cultural and religious engagement. Involving him in the larger society should not be such an effort, but it is, and a large part of that is because the prevailing thoughts are either a) every endeavor must originate from the parents, and seeing it through must also be a full time job for us; or b) really, just find a way to build some kind of exclusive community that sounds a lot like a leper colony but isn’t, because there will be unicorns and endless love, and you can finally lay to rest the dreams of inclusion, the mainstream world doesn’t care enough to help anyway.
Both streams of thought are understandable, but so deeply problematic that I do not even know where to begin.
At this point, I have admitted to myself that I am sick of trying so hard with my existing communities. It is with both relief and brokenness that I face facts. I think that our Hindu organizations can be so deeply ambivalent about people with special needs as actual human beings (as opposed to symbols of whatever people seem to need them to represent, or someone else’s karmic burden) that I am completely uninterested in hearing the errant exceptions, which, if you listen carefully, are usually the result of the abovementioned herculean parental efforts anyway.
Part of me is grieving the loss. The other part of me just wants to do whatever is best for my own family, and cut my losses permanently. For people like me, for whom religion is a critical component to a fulfilling life, the realization that, by virtue of being an autism family, you somehow lose the right to claim a truly meaningful spiritual community as your own is a shocking moment of truth.
As Hindus, we are good at armchair philosophy. We all know people who can gab it up and expound on what the scriptures have to say. But I am done putting my whole family’s identity aside and listening to cherrypicked content that does not translate into action. Engagement. Meaningful inclusion. Respect for the disabled. Really listening to what families are saying is needed, and being part of following through. Supporting instead of standing by. Recognizing an opportunity for karma yoga, and pursuing it ardently.
I feel fine saying that this is probably the spiritual challenge that I was meant to face in this lifetime. Autism parenting has changed my DNA forever, and I do know that the entire society doesn’t have to morph along with us. But the crossroads are already here for us, and we have to keep moving.
I say this not as a religion expert, but as someone whose feet seem always to find the path of divergence: if we are going to be about more than our differences, then we have to find it in ourselves to retain in the mainstream religious sphere people who have their own paths—intellectually, physically, sexually. If we do not actively say to people who are different “You are still my religious family,” they will melt away from us. If we are okay with that, what does that say about us as a faith community? We expect the melted away ones to accept their losses and build new realities. But it is not necessary. It is not necessary. It is not necessary.