Rachel Simon's Blog

When I began doing appearances in connection with The Story of Beautiful Girl, the American Network of Community Options and Resources, or ANCOR, assembled an extremely helpful and easy-to-read brochure that provides additional information about the past, present, and future of the kind of institutions I wrote about in my book – and what we can do to improve that future. The brochure became so popular, ANCOR recently turned it into an electronic flipbook so people could share it online.

I hope you’ll click here to take a look at the flipbook, and then share it with others.

ANCOR also helped me connect with a number of very gifted artists who have disabilities, and who I asked to create artwork that I could use to illustrate key scenes in The Story of Beautiful Girl for my talks. The response was overwhelming, with drawings coming in from adult artists across the country who live in community settings. I chose several of these pieces for my talk (and, yes, compensated those artists for their work), and am including four of them on this blog post.

ANCOR recently created an online art gallery where they posted all the artwork that was sent in, and included biographies about each artist. You can see the art gallery at this link. I’m sure you’ll love looking at this online art show.

The editor of my upcoming novel, The Story of Beautiful Girl, told me a few months ago that some of her colleagues loved the book so much, they wanted me to come to New York so they could meet me. This was wonderful news, and also surprising, since the book isn’t due out until May 2011 and the production process is only in its beginning stages.

The meeting, which happened this past Wednesday, was scheduled for 3 PM, but my thoughtful editor set things up so I wouldn’t have to show up at the offices of Grand Central Publishing ten minutes beforehand and get escorted directly to the conference room. Instead, she set up the prelude of lunch at a very nice restaurant nearby. She included the publicist who’ll be shepherding my book into the world, Evan Boorstyn, and my agent, who shared the good news that the book rights had just been sold to the United Kingdom.

When the four of us first sat down at lunch, I was surprised to find myself a little nervous. It had been several months since I’d had a publishing lunch and I needed to get back into practice. But the main reason was that it was clear that Grand Central Publishing was incredibly enthusiastic about my novel; the 3:00 meeting was going to be attended not by a handful of people, but by many of the major executives in the house.

Lunch was served, and at first I uncharacteristically lost my appetite, as I simply felt as if this were happening to someone else. My editor briefed me on how the meeting would proceed, letting me know that she wanted me to speak about my experiences as a bookseller at Barnes & Noble and about the writing of the book. The whole thing, she said, should last ten to fifteen minutes. Fortunately, I then started telling everyone at the table about the people in the disability community to whom I’d already spoken about the book. And the more I spoke about the world in which I resided – the world of service providers, direct support professionals, self-advocates, the sibling community, etc. – the more I lost my sense of awkwardness.

So with my confidence coming back, we all walked the block to the publisher’s building: a tall, granite-and-glass tower with a cavernous, spare, austerely dark atrium. The glass-backed elevators, which look out onto the atrium, have no buttons to press for your destination floor; you just have to know to program them prior to boarding.

My editor’s assistant brought me to the conference room. A few people were already inside so I waited in the hallway. Some executives came up to me as I stood outside the door and talked about their love of the book, and as they did, I could see in their faces that they were deeply moved. This was an amazing moment for me, because it was so similar to the private, very emotional exchanges I have with people on book signing lines after my talks for Riding The Bus With My Sister. And so I reacted just as I do then: with a surge of warmth and gratitude, a holding of hands, and a sense that I too could show my emotions freely.

And suddenly, out there in the hallway, I realized that if I thought of this as a talk rather than a meeting of executives, I’d feel totally at ease.

By the time the meeting began, moments later, the room had filled. I began by handing out a gift I’d brought, a box of chocolates made only in Delaware (thank you for the suggestion, Marilyn Paige!). As it turned out, this gave me the opportunity to relate how, while walking through downtown Wilmington to reach the candy store two days before, I’d been ambushed by ABC news and asked to comment on Christine O’Donnell’s witchcraft. Yes, a very, very short clip of my response appeared about a minute and thirty-five seconds into a story on Diane Sawyer’s show Monday night, but more importantly, the box of Govatos chocolates allowed the meeting to begin with laughter and sweets.

I then talked, responded to my editor’s prompts, and responded to questions, for almost forty minutes. I talked about the historical person whose heartbreaking story helped inspire the book. I talked about how being a sibling of a person with a disability gave me the background to write the book from multiple points of view. I talked about the different spiritual reactions that each person in the book has to their part of the story. Of course, I also talked about my experiences on the road giving talks for Riding The Bus With My Sister, and the people I’ve met whose struggles and triumphs made me feel this book was important. But my focus was on the characters in and writing of The Story of Beautiful Girl. And as I continued from one question to the next, looking out at the people in the room, I saw their faces reflecting the deep emotions I’d felt when I’d sat alone in my chair, writing this story.

After I wrapped up the talk, people came up to me in small groups and talked about how much they looked forward to doing their particular job (in sales, marketing, publicity, etc.) to help generate an audience. Things started to feel very surreal at this point, given the intensity of the enthusiasm, the high hopes they have for the book’s reception by readers, and, most importantly, the increasingly strong possibility that the disability-related issues in the book will get heard loud and clear by so many people unfamiliar with them.

Afterward, I made my way to the train in a lovely daze which lasted until the next morning. Then my sister called, using a cell phone she borrowed from one of her beloved bus drivers, and in her usual speeding voice, told me about the latest goings-on: her own recent meeting, which was with her service provider; her boyfriend’s search for a new place to live; and the change in the seasons and how she was not going to wear a jacket yet, no matter who else around her thought it was cold. My spirit immediately drifted back to my regular life.

But it was regular life with a thrill running through it. I don’t know how high this elevator is going, and I sure don’t know how to program it. I just trust that it’s taking me to a place where hands will be held, emotions will be shared, and people like my characters – and my sister – will help me feel completely at home.

If you, like me, are the brother or sister of a person with a disability, you have concerns, emotions, and maybe even responsibilities that the siblings of typical individuals don’t contend with.

You might have protected your brother or sister from the neighborhood bully when growing up. Or resented that they didn’t have any chores when you had several. Or relished the contagious glee they expressed when they won a round of Go Fish, or danced in the living room, or greeted you every time you came home. Or felt guilty that you could ride your bike to see friends while they couldn’t ride a bike and didn’t have friends. Or burst with pride when they reached major milestones that you’d hit many years earlier.

From a very early age, you might have worried about what would happen when your parents died.

From a very early age, your vocabulary included words like “IEP”, “group home”, “sheltered workshop”, and “SSI” – words that your friends didn’t know existed.

From a very early age, you felt older and more mature than your friends.

From a very early age, you knew that sometimes you were called upon to act like a brother or sister, and other times like a parent.

And from a very early age, you looked askance at a world that mistreated, ignored, stereotyped, mocked, and cut the funding for people like your siblings – and you couldn’t, for the life of you, understand how anyone could be so insensitive and even ignorant.

If you’re the sibling of a person with a disability, you would have loved a conference I attended this summer, the first International Sibling Conference, held in Greenwich, CT. For three days in early August, adult siblings from all over the world gathered in the sumptuous Hyatt Regency Greenwich to talk about our worries, support each other emotionally, and make friends in the sibling community. By the time it ended, we knew that, regardless of our personal struggles, we would always have others to turn to.

As at all conferences, the three days were full of receptions, presentations, and panel discussions, and every single event, from the largest addresses to the entire crowd to the smallest and most spontaneous moments in the hotel lobby, led to insights about my own life and connections with so many others. I did already know several people there, having encountered them at previous conferences or in my inbox, but I so enjoyed seeing old friends again – and meeting a ton of others for the first time.

Here is a photographic depiction of some of the high points of the conference, which was the brainchild of the people at ARI of Connecticut, Inc., The Sibling Leadership Network, and the Kennedy Center, Inc. I hope it gives you a good taste of the experience, so that, if you too are a sibling, you can join us when we meet again next year. (Please contact Dr. Bob DiDomenico if you’d like to get notified: didomenicor@arict.org)

International Sibling Conference: Channel 12 News Coverage from John Kramer on Vimeo.

We got out of the car in the dark. Despite the lights on the pathway from the parking lot, the only hint we had of the legendary magnificence that lay beyond the trees was an enormous cloud of mist. It hovered in the sky, beckoning like a party of genies just released from their bottles. Only as my new friend Linda led me toward the ridge until we could see the teeming waters of the river did I hear the roar of Niagara Falls.

I’d forgotten, when I’d arrived at the airport in Buffalo earlier that afternoon, that the event I’d be attending the next day was located less than an hour from one of the great natural wonders of the world. I’d been focused instead on my upcoming responsibilities at the twenty-second annual Developmental Disabilities Awareness Day, a hugely successful conference in western New York state. As the author of a memoir about life with my sister, Riding The Bus With My Sister, I’d been invited to give the keynote address, then run a workshop and sign books. I’ve done many such events, but as every person is unique, so is every conference. For one thing, DD Day, as it’s known, regularly attracts about 1,500 people, a more sizable crowd than I usually address. For another, the participants include so many adults with special needs, they might well outnumber the professionals, family members, and children with disabilities in attendance. I rarely see that kind of proportion, and for the whole flight to Buffalo, I was excited.

Certainly I know many adults with disabilities, from my sister Beth and her boyfriend Jesse to many individuals I have met when I speak. But I never cease to be amazed at how common it is for people who aren’t in the disability community to think that “person with a disability” equals “child with a disability.” The idea that the child will become an adult doesn’t seem to occur to them. Their thoughts, like special ed, seem to stop at age twenty-one.

My new friend Linda was on the committee that organized DD Day, and after she got me at the airport, then took me out to have dinner with others from the committee, she asked if I wanted to see Niagara Falls. I’d been there one night thirty years ago, but with out-of-towners like me, and we hadn’t remotely understood what we were seeing. Linda had grown up in this world, so when she offered to be my guide, I said yes.

In the dark, she continued to lead me down the pathway toward the Niagara River. I could see the rapids now, careening toward what she explained were the Horseshoe Falls, and although they were not yet visible from where we stood, and were better viewed from the Canadian side anyway, I understood that their massive power was the source of the mist. We wove through patches of tourists, listening to the screeching of frenzied gulls circling above the water, smelling fish.

We reached the railing. The river was only a few feet beneath where we stood, and in the dark, under a full moon, it coursed black and ghostly and faster than any river I’d ever seen. I could make out the horizon where it began, but had no way of gauging its depth. If Linda hadn’t been with me, explaining the geography before my eyes, I’d have thought that the ledge to our right was not the drop-off point for one of the most majestic sights a person might ever see, but the end of the earth.

A few years ago, I gave a talk for an agency in Erie, PA that provides specialized residential care for adults with developmental disabilities who might also be medically fragile. I met several adults in their group home, and was impressed at how full of life each was, with habits that made them happy and games they enjoyed playing and chairs they loved to sit in. When I came home, bursting with pleasure about this agency and these individuals, I told a colleague at the college where I was teaching about where I’d just been. He listened distractedly, then made a correction. “You mean children,” he said. “No,” I said. “They’re adults.” His face went blank. I said, “When children with special needs get older, they still need services.” His face stayed blank, and as I backed away from the conversation, I thought, Could he really not understand that children with disabilities grow up—into adults with disabilities?

When I encounter this attitude, I try to be sympathetic. I know that, despite the growing presence of adults with disabilities in the workforce, on television, and in the community, many people still think that “special needs” equals “children.” I also know this can be as true for people like my colleague as for young parents whose child has just gotten a diagnosis they never imagined they’d hear. I meet these parents a lot. They’ve just been thrown into a world that’s unknown to them. It looks dark, foreboding, and overwhelming. Where are they going? they ask themselves. How will they find their way? What could it possibly look like when they get there?

Beside the Niagara River, under the full moon, Linda continued to guide me along the railing. The Canadian side, she told me, bathed the Horseshoe Falls with colored lights, but all I could see as we moved was the mist. It so fully engulfed the Falls that we walked for many yards before we could see anything again. Then it was the river, now hundreds of feet below, and far downstream, the other falls for which this landmark is renowned. The American Falls were easier to see, but too far away to admire.

“I wish I could see all of this better,” I told Linda as we made our way back to her car.

“You’ll just have to come back in the daytime,” she said.

It sounded good, but how was I to do that? The next day was devoted to the conference, and my flight home was set for the following morning.

I forgot about Niagara Falls as soon as I went to bed. It did return briefly to my thoughts when I woke up, dressed for my talk, and made my way to the conference center. But as soon as I was enveloped by the crowd, I forgot even that I was in New York state. Instead, I was in a world that transcended all the boundaries, including ethnicity, class, and age. This is one of the great truths of disability: it can happen to any person, in any family, at any time. None of us is so special that we might never have special needs.

Some people, like, perhaps my old colleague, or parents newly entering the disability world, might find that truth frightening. As a sibling, I find it comforting. Yes, it means everyone is vulnerable. But it also means the human race has fewer divisions than we sometimes think. So friends, guides, even role models might already be around us, if we allow ourselves to see.

Then I was swept up in the day. I shook hands with dozens of adults with disabilities, many of whom were involved in the self-advocacy movement. I got on the stage and did my talk, looking out into a room of all ethnicities, classes, and ages. I gave a workshop, and attended others. I stood at the book signing table and hugged parents, siblings, professionals—and individuals with disabilities.

And here’s what I saw as the day progressed, all of it with people who had once been children with disabilities and grown to become adults.

If only every young parent could be here, I thought, as the day wore on. The fear would start to recede. The darkness would lift.

“So,” Linda said as the conference drew to a close, “do you want to go back to the Falls?”

We had just shuttled another speaker—a media advocate who’s the mother of a Hollywood actor with Down Syndrome—to the airport, and I was ready to get back to the hotel and collapse. But the sun was still up. And if I didn’t take this opportunity now, I might not get the chance again.

So for the second time in twenty-four hours, I stepped out of Linda’s car at Niagara Falls. The river was still a roar, and the falls were still a force. But now I could see that the water wasn’t very deep. I could see infra-structure I hadn’t noticed. I could see that Linda had become someone I trusted. Together we moved along the path toward the American Falls, until they were not too far away to admire.

“I wish everyone I know could see this,” I said. Then we looked out to the water and put our arms around each other, and I saw so much that I hadn’t known to see.

Last Wednesday, two weeks before my sister Beth’s fiftieth birthday, my phone rang. I saw her name on the caller ID and was baffled. It was only nine thirty in the morning, and she rarely takes her lunch break so early. I snatched up the phone, expecting her usual, sing-songy “Hi, Sis. Thiz Chatty Beth.”

Instead she said, “My side hurts.” Her voice had a gasping, panicky tone, as if she was holding back tears.

I sat up at my desk, on full alert. This is the opening to a call you do not want to get from someone you love, and especially not someone who needs a little more help to get through life. My sister Beth has an intellectual disability, and although she’s confident and self-reliant, has a boyfriend and an apartment of her own, and has carved out a very social life riding buses all day, every day, I know I need to help when she needs me.

I’ve always known that. She’s eleven months younger than I am. On her birthday we’ll be twins for the next month.

I kept my voice calm. “Does it hurt a lot?” I said.
,
“A lot. And I’ve been throwing up all morning.”

“That doesn’t sound good.”

“My aide’s coming to take me to the doctor.” She pushed the words out through what were obviously volleys of pain. “At ten.”

“Do you want me to come to you?” Beth lives a couple of hours away, even if I broke speed limits all the way there.

“You don’t have to. She’s taking me.”

“Maybe you should go to the hospital.”

“I’m going to the doctor!”

“Will you call me as soon as she sees you?”

“Yeah.”

“Do you want to stay on the phone until your aide gets there?”

“She’s gonna call so we can’t.”

“Then tell her to call me, okay?”

“Yeah,” she said, and she hung up.

I sat there, my heart pounding. I have no medical training, but these sounded like serious symptoms. I wanted to do right by her, but she didn’t tell me to come. My friends with kids have told me about calls like these, when their daughter or son phones in the midst of a crisis, not knowing what was happening, wanting to connect but not wanting their parents’ help, and maybe living too far away for help to come galloping immediately there anyway. My friends have told me about the fear, the feelings of powerlessness, the time-stopping descent into hell of not knowing how bad this might be.

Having a sibling with a disability is not like having a child. For one thing, Beth has always been there; unlike parents, I knew no Before.

For another, everywhere you look, a substantial number of the adults you’ll see are parents, so, as singular as your problems with your child might be, you can take comfort in knowing that you’re far from alone. But special siblings, far less common, might know few, if any, others like themselves, so the sense of aloneness, of having to figure it out on your own, of having no one except a handful of other siblings who truly understand, can be profound.

There are many other distinctions between having a child and being a sibling to someone like Beth, but the one I have the opportunity to notice most often is that sometimes Beth wants to me to do the things a parent might do, like pay for her meals when we go out, attend meetings with her aides, answer questions she’s too embarrassed to ask anyone else. But other times she wants me to be only a sofa-sharing companion while watching DVDs, a supermarket chauffeur who lets her buttons get pushed, an engaged listener to endless bus-related gossip, a tireless back scratcher who expects to get teased for eating soy yogurt, agrees to watch Shark’s Tale for the thirtieth time, notices that each toenail is painted a different color, and knows not to step on the purple rug—i.e., she wants me to be a sister.

Being the sibling of a person with special needs means being a shape-shifter. Which is why, when she didn’t ask me to come meet her at the doctor’s, I didn’t just don my parent cape, jump in my car, and fly up to see her. I stayed dressed as an ordinary sister and waited by the phone at home.

Years ago, I struggled with just about every aspect of our relationship. Then I rode the buses with her, and came to terms with many things about her, about myself, about the unique nature of the special sibling relationship. I recounted my experiences in a book, Riding The Bus With My Sister, which became a movie. But my story with Beth has, of course, continued after the last page and the final credits. That’s the real difference between being a sibling of someone like Beth and being a parent. The lifelong worry of After.

When I was a kid, After meant after our parents passed away. I knew, as did my brother and other sister, that we were expected to step in and be there for Beth after they were gone. As a child, I just accepted this as a fact of my life, but by my college years I’d come to dread it. How would I know what to do? What if we weren’t getting along, as was the case then? Why wasn’t I free to live my own life without this responsibility?

Then Beth entered the world of adult services, and we were lucky enough to find an agency that treated her well. They got her an apartment when she didn’t like the group home. They gave her good training in independent life skills. They hired aides who often stayed with Beth for years. With their support, I no longer had the worries I’d had about After. I could choose to be there After, but it wasn’t a requirement.

I chose to be there.

And then I started to realize there was another kind of After.

What happens After one of us begins to lose the vigor and health we’ve both enjoyed through our half century together? I hate to say this, but I’ve always hoped she would lose it first, so I could—if she wanted—accompany her to doctor appointments and keep her company if she grew weak. Yet she’s always seemed so robust, so unstoppable; even with a cold, even in a blizzard, nothing will keep her off the buses. What will it be like to watch the decline of the willful, energetic, Croc-addicted, Winnie-the-Pooh-adoring, always-in-my-life force of nature known as Chatty Beth? (She was Cool Beth for a long time, but switched to Chatty Beth when a new, favorite bus driver was amused by her talkative ways.)

I haven’t wanted to think about it. Not only can’t I imagine her not being there, always eager for a visit, a call, a letter, and money to buy her ice-cream. But I’ve known siblings who’ve lost their Beths, and have told me that the absence and grief is made all the harder by people who just don’t get it. One friend told me that, soon after her sister’s funeral, people said to her, “You must be so relieved.” She wasn’t relieved at all; without her sister, she felt forlorn, and given that kind of reaction, she felt abandoned.

It’s ironic. Being a sibling of a person with a disability means always feeling connected to someone else. Yet because of the way our society thinks of that someone else, it also means feeling far apart from others.

Fortunately, because of my book, there are hundreds of thousands of people who do think about Beth. Many of them are also siblings, or parents, of people with disabilities. Or they have disabilities themselves. And they know her life is worth as much as any other life, and would never dream of saying, “You must be so relieved.”

Yet there I sat, after she’d hung up, feeling all alone. I wasn’t at her side as she hurried to the doctor. I wasn’t speeding down the highway to meet her at the hospital.

Only later did I learn that I wasn’t alone at all. When the day had begun, and she’d insisted on getting on the bus despite the pain in her side, her bus drivers took stock of the situation. When she began to throw up, they urged her to go home, call her aide, see the doctor. When her aide came, they rushed to the doctor. When the doctor saw her, she sent them to the emergency room. When Beth called her boyfriend from the hospital, he rode his bike right there.

I learned most of this a few hours later, when another one of Beth’s aides began calling me with updates. Over and over she called, as every little piece of news developed. That’s when I found out that Beth had many people who’d been ready to help out. That’s when I found out that, after an early suspicion of diverticulitis and the discovery of an excess of white blood cells, and then a CAT scan, an IV, and morphine for her pain, her aide and her boyfriend stayed by her side. She wasn’t alone.

And, because of the kindness of her friends on the buses, and the professionalism of the people who work at her agency, and the devotion of her boyfriend, neither was I. I might have been sitting alone at home, holding my breath. But I was one of many who encircled her, waiting for the answer, hoping for the best.

Finally, at seven o’clock, she called. This time there was excitement in her voice. They were releasing her, she said, and she couldn’t wait to get home. Her aide got on the line and explained that Beth had had a kidney stone, which she’d passed while she was in the hospital. She was also found to have a slight case of pneumonia. Oh no, I thought, imagining her blasting onto the buses the next morning. But then I learned that, when Beth called a bus driver to tell her, she was told she simply had to stay home the next day and fill the prescription the hospital gave her and take it easy and that was that. And so, Beth told me, she would.

I went to see Beth a few days later. She seemed a little lower in energy than she often does, though I’m not sure if that was because of the pneumonia. In fact, one of her drivers said to me, while I was there, that maybe it was a misdiagnosis, because, after her one day off, Beth had gotten back on the buses and ridden with her usual gusto. The downshift I saw in her energy was probably more related to her having fallen over an uneven sidewalk when she went out to get the prescription filled. She’d hit her forehead and gashed her knee, which still hurt. I felt a surge of worry, then learned that she’d applied Neosporin and bandages.

“How did you know to do that?” I asked.

“A driver told me.”

So as of today, it seems we’ve pulled through. There will be other times ahead, I know that. And maybe the next one will hit me instead of her. But right now, when I think about the Afters that will come, I know she won’t be alone—so I won’t be, either. Some people just get it. They might not be siblings, or even parents. But whoever they are, they know what matters. They know not to step on the purple rug. They know not to ignore the many-colored toenails. They know not to toss around words like “relieved.”