Rachel Simon's Blog

When you have a sibling with a disability, as I do, you spend a lot of your childhood dreaming about a better world: one where people like your sister are treated with respect by all. When you grow up, you might decide to do what you can to realize those dreams.

That’s what happened to me. When I grew up, I started writing books about people with disabilities. I wanted to show what I’d lived with just about every day of my life: the complexity of their hearts, the depth of their spirits, and the fervent desire they share with every individual I know to be fully in charge of their own lives. If I could communicate that on the page, I thought, I might actually help make my dream of a better world come true.

The first book I wrote that aspired to realize this dream was a memoir, Riding The Bus With My Sister. Then I turned to my imagination, realizing it would let me throw the net much wider than I could with my personal experiences. My new book, a novel called The Story of Beautiful Girl, which comes out May 4, is the result.

A few weeks ago, I sat down for an interview with Brenda Finucane, the President-Elect of the National Society of Genetic Counselors. As someone who has worked with people with disabilities, family members, and the professionals who serve them, Brenda was able to cover a broad range of topics in the course of our twenty-seven minute conversation. This interview therefore speaks to just about everyone who would have an interest in my book: general readers, who want to understand what goes into writing a novel; people like my characters Lynnie and Homan, who have disabilities and strive to live lives of freedom and respect; family members like my parents and me, who sometimes struggle to find the best ways to be supportive; and professionals like my character Kate, a dedicated direct care worker, who sometimes must face hard decisions when it comes to serving people like Lynnie.

So among the things Brenda asked were how being a sibling influenced the writing of this book; what kind of research I did to create the world in which the story takes place; whether it was difficult to get inside the minds of my characters; what advice I would give to young parents about such issues as independence, sexuality, and choice; and – the most important question of all – what did my sister think about this new book?

Brenda Finucane is a certified genetic counselor who serves as Elwyn’s Executive Director of Genetic Services. We taped this interview at Elwyn, in Pennsylvania, a multi-state human services organization serving individuals with a wide range of intellectual, physical, behavioral and developmental disabilities.

Thank you, Brenda Finucane, Elwyn, and the National Society of Genetic Counselors for arranging this interview – and for doing all you can to help so many Lynnies and Homans and Kates and, yes, even siblings like me realize our dreams, too.

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.

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.”

Neither my brother nor I are currently working at jobs. Since I write books and give talks to make my living, I am self-employed, a situation that suits me well. My brother, though, is a lawyer who has always worked for others, and he would like to keep it that way. However, over the past year, he’s found himself caught up in the unemployment crisis.

First, the company where he’d long been an in-house attorney underwent a merger and eliminated many positions, including his. Then he found a part-time position for another company, but in this economy they didn’t have enough work coming in to keep him occupied and let him go. So he’s been searching for a job. He tries to be methodical about checking the appropriate job sites, but, like many people in his shoes, sometimes the scarcity of job opportunities is highly dispiriting.

I want to help.  It’s in my nature, not just because I too have experienced the numb despair of being between jobs, or wondering whether the famine of my feast-or-famine writer’s life was going to end, but because I’ve seen so many friends struggle over the last few years.

Unfortunately, I don’t have any jobs to offer him.

But I do have something else.  Me.

I make my own schedule, so I’m able to call him up whenever I want and suggest we go out and do something. Usually he says yes, since just getting out of his apartment can boost his morale. The things we do are minor – we make deposits at the bank, mail things at the post office, run off copies at Staples, go for coffee.

But even these small outings, which we can do at our own pace, without the stress of a time sheet to fill, seem helpful. They give us the chance to talk, and regardless of whether the topics are mundane or significant, based in the present or the past, cover our personal lives or current events, I think they give him the sense that this time is only a pause in his life, and that there is so much more to him than a job.

There are things you want to do when people you love are hurting.  You want to make everything right – get them the perfect job, or romantic partner, or therapist, or medication.  But my outings with my brother are reminding me that there is something else you can do.  You can just be with that person.  Your presence, alone shows him you care, and that he matters in the world.

Now it is spring, and he’s told me that the beauty of the season is helping, too. So on our last visit, rather than just run errands, we went out to a local park, and as we walked through a patch of cherry blossoms, and I snapped these pictures, I asked if I could put them on this blog. He said yes, and when I asked what I should say when I posted them, he smiled and replied, “Tell people that this is your brother, whiling away an unemployed afternoon.”

It is a hard time for him, and so many millions of others. But I am glad that, even though I have no job to give him, he’s letting me be there. So in honor of all the people like him out there, and any self-employed person in a period of famine, here are a few moments of springtime glory.