Finding Our People: Social Climbing, Stigma And Autism Parenting

Recently, I had coffee with a woman I’d connected with through a local synagogue. Actually, she was added to the attendee list of a meeting I had been invited to, to discuss opportunities within that community for my son Noah, a young adult with autism.

S reached out to me directly, to tell me that we knew each other from our respective days working in philanthropy. I couldn’t place her, but since she seemed to remember me kindly, I was thrilled that she reached out. (Aside: with a last name like Mogilnik, you have to be extra mindful of how you carry yourself in the world, since no one is likely to forget you, for good or for ill.)

So we met for coffee. What I thought would be a relatively brief “say hello” kind of get-together, turned into two and a half hours of fluid conversation. I learned about her family, and she about mine. I learned about the challenges she has faced trying to move the synagogue more toward embracing those with special needs. I learned about the extraordinary range of her volunteer involvements, and just about what a kind, warm human being she is.

And the signal for how things might have gone came from our first seeing each other. S was sitting on a bench outside the café I’d suggested, and she looked only vaguely familiar. But she stood up, we greeted one another, and we hugged.

That might sound like a minor thing. But let me contrast it with another recent event in my life. I went back to Long Island (where I lived with my family for twenty-five years) for a book signing event for a friend. She’s also a parent of a young adult son with autism, and we’ve known each other for many years. There were lots of other women there who were familiar, including a former neighbor of mine, a woman from whom I’d lived across the street for about twenty years. Yet neither of us inclined toward a hug. Our catching up was entirely perfunctory. She’s a nice enough woman, but our encounter was a perfect metaphor for my time living in that community. It felt to me like a place that was distant, lacking in warmth, bereft of real connection, and deeply superficial (if that isn’t a contradiction in terms).

I continue to be struck by how the two women I know well from my time on Long Island who have kids with special needs were so much more integrated into the community. And I’ve wrestled with why. I think maybe it’s because their capacity to accept and live in a community culture with a great deal that I don’t like was just greater than mine. I don’t like cliques, and the community we lived in was full of them. I don’t like gossip, another prominent feature. I don’t like competitive child-rearing, which was practically the defining feature of where we lived. But maybe that wasn’t all of it.

While I could feel and be connected to two other mothers of kids with special needs, I lacked their connection to the broader community.   Some of that I think has to do with the vagaries of life, e.g., belonging to different synagogues, having other kids of different ages, so there wasn’t natural social overlap. I’m also a deeply private person (my public writings notwithstanding), and I lived in a community full of very judgmental and often unkind people, so I was not inclined to jump in and join when my ability to trust how people would treat what I might share was very low. And frankly, I found few opportunities to be my authentic self in that place. Because I knew deep down that my authentic self was out of synch with the accepted norms of that community. That wasn’t just my imagination; it was the product of numerous unpleasant experiences.

Now I know I can be prone to exuberance about new things, new experiences, and new people, but even S and I, in our first encounter, were able to bond over our shared sense of the problematic issues attached to what I call the “arrogance of affluence.” This came up because she was describing a neighbor in her building whose son she thought would be a playmate over time for her son. The mother was initially enthusiastic, until she heard that a play date had to be rescheduled to accommodate an appointment S had for her son with his speech therapist. After that, the neighbor avoided S like the plague. Sadly, I could relate.

In communities full of strivers and social climbers, there is little room for difference, for struggle. There is instead the sense that if you “expose” your children to those of lesser ability, of different ability, that that will somehow diminish your child’s prospects. Or your child becomes an opportunity for the striving kids to pad their resumes. They join buddy clubs and pretend to care about your child, but when cheerleading practice conflicts, or there’s a basketball game to play in or watch, they’re off like a shot. But don’t think they won’t play up their empathetic bona fides on their college applications.

I’ve struggled a lot with how much of this is me. Am I just an unappealing person? Did other people in that community have better experiences because they were more likable? Was I viewed as unkind? I guess the only way really to answer that question is to consider counter examples.

Having picked up and moved our family from the suburbs to the city, I’ve created a giant counter example. And I’ve discovered that it’s not me, in spite of my many, and perhaps even glaring, faults. How do I know this? Well, my encounter with S is one example, but so are other city friends—new and not so new. They are to a person kind, interesting, empathetic, and generous. So if that is who they are, I have to believe that they see some of that in me. Otherwise, why bother being my friend? There’s no my kid/your kid competitive BS; there’s valuing the person. What a revelation.

I’ve pondered why the city has been so much better. And it comes down for me to diversity. In a closed community, comprised of one or two dominant ethnic/religious groups, if you don’t fit, there is nowhere to turn. In the city, there’s just a crazy hodgepodge of people, and a much wider band of what’s acceptable.

I have found through the years that among the most reliably kind people are those who themselves are marginalized. They understand struggle and difference because they live it. In the community I came from, struggle and difference were often hidden, because they weren’t welcome, or accepted. In the city, you see physically disabled people out and about. You ride the subways with people who are hanging on by a thread, at times. You see homeless people, and elderly people navigating the streets. You see kids and adults of all backgrounds and genders, all thrown together. None of it seems to matter. Sure, each neighborhood has its own kind of character, but if you aren’t so in love with the character in your immediate neighborhood, just walk a few blocks and find another. That’s not an option in the suburbs.

I also cannot help but contrast two experiences that for me solidify the differences between (my experience of) suburb and city. Years ago, my husband and I were walking Noah to preschool. He was a preternaturally beautiful little boy, with a full head of curly red hair. As we got to the corner by his school, we encountered another mother with her young child. She pointedly pulled him away. I turned to my husband, “She must think Noah is contagious.” Fast forward about nineteen years. I took Noah for his most recent 24-hour EEG. That meant he walked around our new neighborhood for an afternoon with his head wrapped like a mummy, and a carrying pouch with a monitoring device for all the sensors hanging by his side. Noah had his weekly fitness class at the Y that same day, and I took him. No one gave him a second look, not the security guards, not the staff at the check-in desk for the gym, not the staff in the cardio court (all of whom, by the way, get Noah.   They look out for him without my asking.) I told one of the instructors to take it slow with Noah that day and maybe just keep an extra eye on him. And I left.   I don’t know that any of this makes a difference to Noah, since he is blissfully unaware of the unkindness of others. But for me, it is everything.

I’m so glad I went to that book signing. I was happy for my friend’s achievement. But it also confirmed for me that leaving that place was the right decision. Not an ounce of regret, but for the years I wish I’d spent being happier. When I told S how impressed and in awe I was of her many charitable and community involvements, she responded by saying, “Look what you did. You picked up and moved your entire family for a better life.” I carried that observation with me to the book signing and thought, “Yes, yes I did. And how very glad I am.”

Nina Mogilnik’s professional career has encompassed work in the philanthropic, nonprofit and government sectors. Nina serves on the board of Birch Family Services, an organization dedicated to educating and supporting into adulthood individuals with a range of developmental disabilities. Nina is also an avocational writer, and has had a number of essays about her experiences dealing with her father’s Alzheimer’s and her son’s autism published in Haddasah Magazine and in The Jewish Week.  She was recently invited to blog for The Times of Israel and has been contributing her take on life and current events.  Nina’s proudest accomplishment — and hardest job by far — has been as a mother. Nina has degrees in philosophy from Union College (B.A.) and from the University of Chicago (M.Phil). She lives with her husband and kids (human and canine) in New York City.