Being a senior mama, I qualify for all those dubious privileges of advancing age that our society offers. Senior coffee at McDonalds. Senior Discount Day at the grocery store on the first Wednesday of every month. And loftiest of all: full membership at our town’s Senior Center, with all the privileges that entails. There, in a comprehensive program reserved for those 55 years and over, I can participate in subsidized classes from Art Appreciation to Zumba, discounted lunches shared over conversation with my peers, help with my income tax, workshops in computer skills and health topics, free movie nights, special interest clubs—the works.
That, at any rate, is the theory. In reality, although my privileges at McDonald’s and the grocery store are secure, I am effectively excluded from my community’s Senior Center. Because of my disabilities.
Well, okay, maybe they’re not exactly my own disabilities, though I certainly deal with them day in and day out, and I have a deep and even grateful sense of ownership in them. I am caregiver to my two adult children—Dara, for whom the math skills necessary to balance food and insulin in the care of her diabetes are well beyond her reach, and Tony, whose autism makes hard work of nearly every task of everyday living. I’m stay-at-home mom. Medical scheduler. In-home nurse. Social director. It’s a big job, and it doesn’t leave me or my husband Bob a lot of leisure time, and even less alone time. We do things together as a family because, how can we not?
Every program offered by the Senior Center is adaptive for the scores of oldsters there who suffer from physical or cognitive impairments. Even better, instructors for seniors provide an encouraging and non-competitive atmosphere, which is ideal for younger people with disabilities as well. Perfect match-up for the four of us. Except that, at 32 and 33 years of age, our kids are banned from participating with us.
The year I turned 55 I was busy fighting for my life after a cancer diagnosis. By the time I emerged from the fog of treatment, I was too dazed to look around for the privileges that were mine as a newly-minted senior. It took several more years before I attempted to make use of the Senior Center’s resources, only to realize that none of them were actually available to me with my adult kids in tow.
About a year ago I finally decided to plead for inclusion. It started innocently enough. I searched my city’s website for the people responsible for the senior program and those designated to watchdog the interests of people with disabilities. The senior program was easy enough to find, but it took days of scouring the website before I stumbled upon a division of government called “Diversity,” where the person responsible for compliance with the Americans with Disabilities Act hid out. Good enough—if they were that afraid to show themselves, I’d start with the Senior Program people instead.
I emailed the Senior Program Manager and asked her if our family might be allowed to attend some of their activities, on the grounds that at least half of us were indeed seniors, and fully responsible for the physical and social needs of the other half. I expected a polite no. Perhaps even some justification of the city’s subsidy of programs for an exclusive membership, but a no nonetheless. And then I intended to let it drop. I had little time or energy for quixotic exploits.
By return email I received a listing of adaptive classes and Friday evening social activities for the developmentally disabled, and the news that, as their parents, we could attend with our kids at no charge. But, no, the invitation did not extend in the other direction: our kids could not attend senior programs with us. The reason she gave for disallowing them was that “seniors want to take classes only with other seniors.”
I pondered her response awhile. I considered that the reason we have an Americans with Disabilities Act at all, much less the Fourteenth Amendment to the Constitution, is because people will always want to be with whatever people they designate as “their own kind.” Legally, at least, that was an attitude we as a society had already put to rest. It was a poor excuse for a policy that excluded a portion of the population it was meant to serve. I had intended to drop it. I wished I hadn’t brought it up in the first place. Still, how could I let such an answer stand unchallenged?
I ferreted out the sequestered ADA Compliance Specialist and he obliged me with a telephone call that extended for the better part of an hour. He was warm and chatty, and I learned much of his personal history. But as for helping me with my request, he could do nothing.
My next email went to the mayor, and this one resulted in instant response. Not from the mayor, but from the Director of Social Services, who arranged an interview with me in her warren above the public library. Dara, by now intrigued with the brouhaha I’d created with my simple request, asked to come along. We presented ourselves at the appointed time, waited twenty minutes, and were finally greeted by the Director herself. She escorted us to a room where three other city employees awaited us, all of them seated behind a long table. Chairs for Dara and me were hastily arranged facing them, several feet away.
Given the setting, I don’t even need to tell you how our meeting went. We were again directed to the adaptive activities program for the developmentally disabled, and it was suggested that if I wanted my peers to participate in activities with me and my children, that I invite them to those programs open to adults of any age. They provided me with several copies of their current general class offerings so that my friends and I might choose one to attend together. But the Senior Center was off limits.
Frustration brought me near to tears, but I managed to contain it. I was not, after all, alone. The population of seniors still looking after their adult kids continues to grow with every year. Some of us care for the burgeoning population of autistic young men and women who are aging out of available support programs, others for disabled war veterans who are the victims of IEDs, and still others for an aging Down Syndrome population that has gained in longevity due to recent advances in medical care. All of us—kids and moms alike—have no share in the opportunities our taxes bought for others our age.
But the meeting was over. They had made their point. As the Director escorted us through the hallways to the lobby, she spoke soothingly of some extra money the City had that they could apply to the needs of parents like me. A few classes, perhaps, just for seniors with their adult children with disabilities. Would I be interested in being on a committee with some City employees to explore the need for classes like that?
“Of course,” I said. But I thought, separate but equal. Wasn’t that a policy we’d already determined to be inequitable?
“I’ll be calling you soon, then,” she said.
* * *
It’s not as though I’ve ever been much of a joiner. With nine kids, and the need to homeschool many of them, I have always been otherwise engaged, and happily so. I’ve learned to find my sense of belonging wherever it appears. Anywhere at all. At the grocery store, for instance.
It’s a Saturday evening, weekly grocery shopping night. Dara and I lead the way, poring over the labels on cans and packages, checking fat and carb content that can affect the control of her diabetes. Behind us Tony busies himself pushing the cart down the exact center of each aisle, to the accompaniment of his own mouth-made motor noises, screeching brakes, the occasional shrieking siren.
Bob brings up the rear, one eye on Tony and the other on his half of the shopping list. His progress is interrupted by a tall, trim black woman with striking blond hair, elaborately coifed. She’s wearing gold spike heels, a silky blouse encrusted with multicolored rhinestones, and a hungry, intent expression.
“That your boy?” she says to Bob.
“He’s my son,” Bob answers, wary, moving off down the aisle, nudging Tony ahead of him.
“He autistic?” she asks, turning her cart to follow us. Bob quickens his pace and I hurry Dara ahead. The woman is louder now, undaunted. “Because how I know is, my boy’s autistic, and he moves like him. You know, that way they flutter with their hands. Only, your boy, he so peaceful, and my boy ain’t.”
Which changes everything. Bob turns back to her. “He’s autistic, yes. That’s the term they use anyway. But really he’s just my son, Tony.”
“You adopted him.” It’s not a question. Tony, like most of our kids, is adopted; he is black, and Bob is white. “He so peaceful, though,” she says. “He’s not like my boy. My boy, I can’t bring him to no grocery store, because people, they don’t want him here.”
Bob is nodding, and Tony, toying with the cart, focuses on their conversation even while he skips from foot to foot, muttering.
“He get mad, he might lay right down on the floor and cry,” the woman continues. “And people, they don’t want to give me no room for that. They don’t have no time for me to calm him down. They want him out of here right now because he act strange. They don’t know what to do with somebody different.”
“How old?” Bob says.
“He twelve,” she answers. “Younger than your boy.”
“The teenage years are hard,” Bob tells her. “But there’s hope.”
She is nodding now too, slowly, sadly. “I kept him all along till now,” she says. “But everybody say I can’t much longer. He gonna be an adult, and then he gonna be too much burden, they all telling me.”
“We’ve heard that too,” Bob says.
“But you keeping him,” she says, and there’s sudden fierceness in her tone. “And I keeping my boy, too. He’s my baby.”
“Yes he is,” I blurt, and move to her side. “I’m Tony’s mom,” I tell her, and without preamble she reaches out and hugs me.
“I’m Kevin’s mom,” she says.
In the exhilaration of discovering one another, we embrace a kind of belonging that doesn’t require so much as an exchange of names. With a verbal shorthand that reduces whole paragraphs of shared experience to a few key words, we exchange the broad outlines of our lives as parents of outcast children. As outcasts ourselves.
* * *
It has been a year now since the Director of Social Services offered to involve us on their committee to develop new programs for parents like us. Not surprisingly, she has never called. We’ll be all right, of course, all of us moms with our kids who need us still. We’re flexible and inventive, as moms are meant to be. When loneliness threatens to exhaust us, we listen for someone—even in a grocery store—who understands the distance we’ve traveled toward the hope of finally belonging.