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.

With one hour to go before my first big bookseller dinner on the West Coast leg of my pre-sale tour, I can sum up the trip as follows:

So far, so great.

When I got to Philadelphia Airport for the first of my two flights and made my way to the far end of the D terminal for my gate, I was greeted by a elegant art exhibit of colored glass. Some people are so put off by the inconveniences of air travel that they don’t seem to notice the many attractions that airports provide to make every journey more interesting, but I’m not one of them. I enjoy looking at the treats that airport curators have put in my path, and in this case, I was so captivated by the work of artist Michael Schunke that I thought, If there are omens for travelers embarking in eight-city pre-sale book tours, then there can’t be a better one than this.

This positive feeling persisted, despite my flight being slightly delayed, leading to my having to walk very quickly through Minneapolis on my layover. It so happens that Minneapolis, along with Denver and my beloved Detroit, are among my favorite airports, and I’ve walked it many times – though not as hastily as I did yesterday. But I made it to the gate with about two minutes to spare, and it never hurts to get a brief aerobic workout during a long day of flying, so I settled into my seat quite happily.

(You might think I’m inventing my cheerfulness, but I really do feel in a pretty happy state when I travel. It’s an alternate universe where you can meet people, get things done without intrusions, see new sights, and shuck off the you of recent weeks to return to the self you’ve always been, and always will be, when you allow yourself the peace and timelessness to return.)

And then, after a swift cab ride with a driver who kindly forgave me my ignorance of his favorite team, the Blazers, I was in Portland.

I’ve been here twice before, both times for talks related to Riding The Bus With My Sister. The first time, when I spoke for the transit community in Pioneer Square, my host likened Portland to Philadelphia, in that it was a major city that was sandwiched between two more major cities (Seattle and San Francisco, and New York and Washington, respectively), yet it had its own thriving culture. I remember that when I asked people if they liked living here, every single person said yes, which certainly does not happen in Philadelphia. This time, the same has remained true, from the cab driver, who told me that “anyone on the street will help you if you’re lost” to the staff people I’ve met at the hotel to the person I spent this morning with (more to come on that).

And it was easy to see why, when I went out for a walk this morning. The city is a mix of old and new architecture, often side by side. Most people seem to ride bicycles, walk, or take public transportation to work, and many wear backpacks to make their travel easier. Cars stopped when I reached crosswalks, even if they were in the middle of the streets. Public art was plentiful and playful (I’ll put some examples at the end of this post). Unlike in some cities I’ve know, and even lived in, no one walked along with a scowl or glare; no one gave me the finger for happening to glance their way; no one dropped food wrappers on the ground like the world was their garbage can. Probably these things all happen here, but not so frequently that a visitor cannot avoid seeing them.

I was also lucky (or is it another omen?). Portland, famed for its rain, was dry today. In fact, when I went down to the Williamette River, the sun reached down through the clouds to pat the rooftops of the city.

But the best part of my day so far came after my walk, when I had the first of what I hope will be several opportunities to meet with local people in the disability community. When I learned I would be making this trip, I reached out to friends and organizations to ask if they knew people in the disability communities in each of the cities where I’ll be on this tour. My goal was to meet as many people as I could over lunch or tea so I could learn their stories, find out about services (and institutions) in their states, and tell them about my novel.

Many friends and organizations were enormously helpful. I owe a big shout-out to ANCOR, a national organization of provider agencies that support people with disabilities, which sent me lists of people in each of the cities I’ll be in. Also very helpful was dear Don Meyer, who runs the Sibling Support Project, and urged me – along with many others, including Tina Prochaska, a sibling who works at the Tennessee School for the Deaf – to reach out to Tamar Heller in Chicago. Then there’s Joy Weeber and Bill Gaventa, both of whom sent my request out on list serves. And Jim Conroy, who gave me names of individuals who have spent their careers championing civil rights for people with disabilities. (I’m sure there are others who I’m just not remembering at the moment.) Thank you all!

As a result of this, I had a meeting this morning with Tim Kral, the Executive Director of Oregon Rehabilitation Association. This is the state association of agencies that provide services for people like my sister. No one else was able to get away from work at the time when I was free, so Tim and I had a luxurious two hours to talk. This was especially fun for both of us because he has an MFA in poetry, and has written poems about the injustices in the ways people with disabilities are treated. We drank tea, talked writing, and, in our own ways, recommitted ourselves to our missions. (See below for his photo)

There is so much more I want to write – about the fancy Heathman Hotel, the down-to-earth Safeway where I got a simple lunch of yogurt and fruit (trying to eat light in advance of my big dinner), the walk past the famous Powell’s Bookstore – which will be well-represented in tonight’s dinner, etc. But I have ten minutes to post a few more photos at the end of this entry and send it out to the world. So please forgive the haste – though I suppose that’s part of my trip, too. And please forgive my lack of proofreading, which I’ll try to do when I get back late tonight.

More tomorrow – after I arrive in Seattle, and can tell you about tonight’s dinner. Till then, may your own life be filled with sweet omens, or at least a head-patting sun.

And suddenly, it was 5:30. Time to race down the hallway of this Washington, DC hotel to take the elevator from the sixteenth to the first floor. Time to snake my way through the throngs of bookstore owners and publishers’ sales reps and fifty-five authors coming out with books this spring. Time to enter the gigantic ballroom adorned with delectable hors d’oeuvres I would have no time to eat, make my way to a table piled high with advanced reader’s copies of my soon-to-be-released novel, shake the hand of the internationally famous writer sharing my table, and prepare to sign The Story of Beautiful Girl for hundreds of booksellers.

Time for the big time.

But first, one quick check in my hotel mirror.

One year ago, I never could have imagined I would find myself at this moment in my life. I had just spent three years writing The Story of Beautiful Girl, almost all of it without showing the book to others or even disclosing to those closest to me that I was writing it. I felt I owed it to the characters in the book – who’d come to feel fully alive and emotionally connected to me – to give them the privacy to reach their fullest potential first. After all, the two main characters are people with disabilities caught up in dire situations. In some ways their story mirrors the stories of many people with disabilities I’ve met, read about, cared about, and loved. The book also tells a powerful and important history that has been hidden from or overlooked by America for so long, it might as well be a secret. So for three years, I filled my characters’ spirits with my knowledge, hopes, and heart, feeling compelled to give them all I had before introducing them to others.

As a result, when my agent submitted The Story of Beautiful Girl to publishers last January, it had probably been seen by fewer than ten people. To my delight and amazement, Grand Central Publishing made an offer within six days of receiving the book. The editor was over the moon about the book, and Grand Central is an imprint at Hachette Book Group, one of the largest and most successful publishers in the business, so I knew my book had found a good home.

But what a great home it turned out to be.

Last June, soon after the edits were completed and a publication date was set for May 4, 2011, my editor called. “A lot of people here are reading your book,” she said almost breathlessly, “and they really love it.” It was nice to hear this, but I didn’t understand what that might really mean.

I started to get a hint of it at the end of the summer, when she called back. “They like your book so much, they want to meet you.” In my entire writing career – five previous books, published between 1990 and 2010 – it had always been me who wanted to meet people in the publishing house, not them who wanted to meet me.

I went to New York in September for what turned out to be a big meeting full of major executives. I wrote about this meeting in an earlier blog post, but the very abbreviated version is that the individuals in that room – publicists, editors, sales and marketing people, etc. – were profoundly affected by my book. They made it clear they wanted it to be a big success.

Again, I thanked people. Again, I didn’t really understand what was happening.

Then, a few weeks later, I heard from the publicist who was handling my book. “We’re going to send you on a pre-sale tour,” he said. “Are you free the last two weeks in January and the first in February?” I had never even heard the term “pre-sale tour”, but I said yes, sure, I’d be free. And then the wheels were in motion.

I soon learned that a pre-sale tour is a rare and special thing, done selectively at the request of the Sales department and/or booksellers. It consists of the publisher sending the author around the country months before a book comes out. In each city, the publisher sets up meetings with booksellers, which, in my case, would be at a series of private dinners in upscale restaurants, attended by people from the publishing house and up to fourteen or so booksellers. During the dinner, I would be expected to talk about my book in an informal way. The goal would be to help build interest and excitement for my book, and to build buzz. I would go to eight cities, for eight dinners, in twelve days – after a big kick-off event at a huge booksellers’ conference in Washington, DC.

That was the conference I was about to attend now.

I didn’t like what I saw in the mirror. I’d had such a busy day, I’d checked into the Marriott Crystal City at the last possible minute, three scarves around my neck to shield me from the chill of the January dusk, stomach mewing for its usual five p.m. snack, hair askew from a wildly busy day and a hurried walk here from the Metro. I’d run to my sixteenth floor room, hastily tossed my coat and two scarves, and chucked a few pumpkin seeds in my mouth. But oh, my hair. My usually lively, bouncy, curly hair had lost its verve. It slouched and sulked. It wanted a nap.

No nap allowed! Especially because it was my own fault that my hair was looking so lackluster. I could have just decided, when the publisher set up the pre-sale tour, that I’d do what I needed to do and nothing more. But no. I felt so committed to my characters, and to the secret history told by their lives, that I decided I had to make the most of my time in each city. So for the last few weeks, I’d been setting up meetings with people in the disability community in every city I’d be visiting, and today – the first city, the first day – had been packed.

I’d begun it by taking the Amtrak to Washington, then meeting a prominent person from Easter Seals Project Action. Brought together over lunch in La Taberna Del Alabardero Restaurant near the White House, introduced by a friend in the public transit world, we talked about Easter Seals, my book, and our mutual commitment to social justice for people with disabilities. Then I’d had tea with Joseph Shapiro, author of one of the most important books in the disability community, No Pity (see photo). Only after I’d hopped onto the Metro, gotten lost in an underground maze of shops, and made my way to the Marriott Crystal City, had I arrived at my real destination, the American Booksellers Association’s conference, called the Winter Institute. No wonder my hair was rebelling.

I did the quick-fix trick known to all of us with curly hair: I wet a comb, pulled it furiously through my hair, and plumped up the dripping locks with my fingers. Curls reformed. Revival arrived. I snapped a photo of myself, ran out the door – and then, I was on the tour.

The ballroom was large and crowded. Booksellers from all over the country milled about, sipping wine, nibbling finger food, perusing the list of authors taking their seats at the book signing tables. A lovely person from Grand Central found me and led me through the throngs to my own table. As I looked around, I remembered reading the previous day’s Publisher’s Lunch, an online daily that everyone in the industry reads:

“With each passing year the annual ABA Winter Institute has become a showcase for emerging writers and a place to pre-launch what publishers hope will be summer hits – especially in fiction. Some of the 40-odd authors who appeared at Wi5 last year included Adam Ross (MR. PEANUT), Danielle Trussoni (ANGELOLOGY) Justin Cronin (as part of the massive pre-pub blitz for THE PASSAGE), Brady Udall (THE LONELY POLYGAMIST) and Karl Marlantes (MATTERHORN). For Wi6, which starts today in Washington, DC, the number of attending authors is up to 56 and chatter on Facebook and Twitter indicates it’s going to be an even bigger deal. To that end, I’ve scoured the list of attending authors and highlighted titles, and picked out a number that you have either heard about already or can expect to hear more about soon.”

The writer then mentioned The Story of Beautiful Girl – a highlighted book! My heart leapt. Another prominent book was Guilt By Association, a thriller coming out in April by the famous person who’d be sharing my table. The famous person I was walking up to now. A smiling, attractive woman with a face known to billions. Marcia Clark, the prosecutor for the O.J. Simpson trial.

“So great to meet you,” we both said, shaking hands, and, despite all her fame, Marcia (yes, we were suddenly on a first-name basis) immediately came off as cheerful, friendly, and spirited. She was also very attractive, and clearly as happy as I about being featured at this conference – and being with our publisher. I wanted to ask her so many things, though none of them about the trial, which I hadn’t watched. I wondered how she’d felt going from the public world of the courtroom to the private world of the writer. I wondered if she’d liked writing fiction even more than she’d expected. I wondered if the earlier part of her day had been just as uplifting as mine.

But the lines were already forming, so even though we were right beside each other, we barely got to speak except to share pens or catch our breath together during the rare quiet moment. We had to focus on the booksellers.

And what fun that was. I actually stood beside my books rather than sit, a habit I’ve had since my book Riding The Bus With My Sister came out and I realized that some people in my book signing lines were so moved by the book – or so eager to share their own emotional story – that they would be crying. Being only five feet tall, I already felt far away from anyone standing on the other side of a table, so I just decided to do all my signings standing up, making it easier to look someone in the eye, and, when they wanted, to give them a hug.

So I stood, and rather than risk getting into long discussions with each bookseller and holding up the line, I drew half a dozen into a semi-circle at a time. That way I could tell them about the book – but, just as importantly, I could tell them that I’d once been a bookseller too, and could make suggestions for ways they could hand-sell this book to their customers. It was thrilling to be able to share all I’d learned this last year about why The Story of Beautiful Girl is striking such a chord in early readers. It was even more thrilling when some of the booksellers looked at me with huge smiles or tearful eyes and said, “I’ve already read it – and I love it!” And then we hugged.

I signed advanced reader’s copies of the book for two and a half hours before I even looked up. My mewing stomach was now wailing, but I didn’t care. My hair was doing whatever it wanted to do, and I didn’t care. I just cared that my characters had moved into some readers’ lives already, and touched them so deeply.

After the signing wound down, twenty-two booksellers, three sales people from my publisher’s, Marcia, and I walked three brisk blocks to McCormick and Schmick’s, another nice restaurant. We paraded into a private room in the back, where we sat at a table so long, it had to be positioned on a diagonal, with Marcia on one end, me on the other.

And then we ate a delicious dinner, trading seats halfway through the meal so we could talk to every bookseller there. A number of them had already read my book and were brimming with affection. One said to me, “I loved your book so much, I couldn’t breathe until I got to the last line.” Another said, “The only thing I’m concerned about with your book is that it will sell so fast I won’t have enough copies.” Others, who hadn’t yet read the book, said, “I’ll be seeing you on your tour” – in San Francisco, Seattle, Denver – “and I’ll read it by then!” And with all of them, their bonds with the sales force were clear. These weren’t just business people. They were friends who were devoted to books, and reading, and the life of the mind. They were happy to be with me, and happy to be together. They were the circle of support that all people – with or without disabilities, with or without books – deserve to have. And we were clinking glasses together.

It was heady, to be sure. But finally I broke away, went to the ladies room, and looked at myself once again in the mirror.

Could this really be happening? Yes.

Might the story I wrote – a story that I think could make a real difference – find its audience? Well, maybe yes.

Could I keep going for two more weeks of this, when I’ve already eaten more calories in one day than I usually eat in a week? When I’m setting up so many extra meetings with people for lunch and tea that my curls will need a whole lot more than a wet comb? And when, no matter what anyone might think about my book, I’m still the person who sat alone in a room for three years with no one but Beautiful Girl, the love of her life, Homan, her baby Julia, her devoted staff person Kate, and the stranger she trusts, Martha – caring only that I would do well by them?

Yes I can. Yes, I must.

I tell myself I will share the experience through this blog, from my next stop – Portland, OR, to which I fly on Mon, Jan. 24 – to my last, Denver, which I leave on Sat., Feb. 5.

I tell myself that I will have at least as much fun as I had on this glorious night – and maybe even more.

And I tell myself that isn’t, I now know, the big time.

There is no big time.

There is only one hand-shake and conversation and hug after another, in rooms large and small, over meals grand and simple, with people who have, if this first night has been any indication, truly and wonderfully big hearts.

To learn more about The Story of Beautiful Girl, read an excerpt, see a video, and pre-order a copy, please check out my newly updated website, www.rachelsimon.com.

We are Speaking For Ourselves
Speaking For Ourselves
No one else can do as well
Speaking For Ourselves

This was the chorus I heard as I reached for the ballroom doors, the voices within singing loud and proud. I was a little tired from getting up early and driving to this conference in Harrisburg, but the joy I felt at hearing a hundred fifty voices singing this anthem made me glad I’d decided to arrive early. As the lunchtime speaker, I wasn’t due for a few hours, but I wanted to be present for as much of the day as I could. This was not because the organization was kicking off its annual gathering with a rousing sing-along led by a guitar-wielding songwriter – something that might well happen at public events with a political twist just about every day. Nor was it because this group consisted of grown men and women with intellectual disabilities – a demographic with which I’ve been familiar since my sister Beth entered her own adult years.

It was because this was a conference of self-advocates: individuals with developmental disabilities who are using their voices to fight for their own civil rights.

The group continues to sing:
Once I was afraid to speak
I was lonely I was weak
With a voice so very small
That I had not voice at all

Then I found a friend like me
And another made us three
And we laughed and then we cried
And then this is what we tried

I first learned about the self-advocacy movement about nine years ago. Perhaps because I grew up in the civil rights era and admired Dr. Martin Luther King, Jr., perhaps because of my sister, it always made sense to me that people with disabilities deserved respect and opportunity, the freedom not to be discriminated against, and the right to live outside the walls of institutions. When I reached middle age and had my awareness raised by joining my sister in her favorite pastime, riding city buses, I also came to embrace the idea of self-determination, which says that people with disabilities have the right to make their own choices about their own lives.

But until I learned about the self-advocate movement, I hadn’t recognized that individuals with disabilities could be their own Dr. King. They could form and run their own organizations in which they could advocate for themselves. Maybe they’d do so with a relative or friend at their side, maybe not. But they’d use their own voices – or, when necessary, assistive devices – to speak to legislators, educate the public, wage battles for employment, transportation, and funding, and fight for the permanent closing of institutions.

The national self-advocacy organization is SABE, which stands for Self-Advocates Becoming Empowered.

The organization on the other side of these ballroom doors is the major self-advocacy organization in Pennsylvania. It’s called Speaking For Ourselves.

And I step into the room as the song Speaking For Ourselves reaches its final verse.

We’ve been called by many names
We’ve been made to feel ashamed
We’ve been locked behind a door
But we’ll come outside once more

We are Speaking For Ourselves
Speaking For Ourselves
No one else can speak as well
Speaking For Ourselves
- Speaking For Ourselves, by Karl Williams

If you think that people with intellectual disabilities are, by definition, incapable of political engagement, you should have stood beside me for the next few hours. You would have mingled with these people, among others:

In 2010, Frank Yurick was voted co-President of Speaking For Ourselves. He’s run training programs for Speaking For Ourselves to help people find services, resist abusers, and speak up to enhance their quality of life. He also works for Liberty Resources as an attendant for a person with a disability.

Since 2006, Debbie Robinson has been the Executive Director of Speaking For Ourselves. Debbie once attended a White House meeting with President Bill Clinton, where she told him “When you give talks on TV, you don’t talk about disability issues. You need to bring this up more to the public. We need to hear your voice supporting us and the ADA.” The President said, “You are right. I need to do more on that.”

Sara Wolff is a motivational speaker who has given talks at schools, churches, and business and community organizations. Sara is a law clerk at O’Malley & Langan Law Offices who has organized a buddy walk, made a PSA video, been featured in such magazines as Allure, Glamour, Vogue, Self and Lucky, and serves on three boards. During the course of her work, she has met Barbara Walters, Meredith Viera, and Dwayne “The Rock” Johnson. She is also an aspiring writer who is interested in writing short stories.

Bill Krebs is working with Blue Fire Consulting on a project called Beyond Tokenism, which helps people with disabilities to be truly included on boards of advocacy organizations without being tokens. Bill sees board inclusion as being on a football field with the object of the game being to go from one end to the other getting through defense – and then to score. Bill isn’t afraid to speak what’s on his mind; that’s why his nickname is Trouble.

Jody Saitsky, a strong self-advocate, is Vice President of the Philadelphia chapter, and well-known for her cooking.

Marjorie Bungard is on the Board of Speakings For Ourselves. She is part of the planned advisory committee under the developmental programs, and was appointed by Deputy Kevin Casey. She also started the Mon Valley Chapter of Speaking For Ourselves over twenty years ago.

Karl Williams is the singer-songwriter who led the sing-along at the opening session. His compositions, two of which I’ve included here, are the soundtrack for the self-advocacy moment. He also wrote down the words of Roland Johnson, one of the pioneers of the self-advocacy movement, for Roland’s autobiography, Lost In A Desert World.

There were so many more people I wanted to meet. I wanted to hear their stories, find out about their advocacy work, and just spend time in their company. I also wanted to attend more sessions at the conference – there was so much about self-advocacy for me to learn!

But my sister Beth lives a few hours away, and I’d made a date to visit. We weren’t going to ride the buses; we were going to her favorite restaurant for her favorite ice-cream, mint chocolate chip, then back to her apartment to watch a favorite TV show, Family Feud, while engaging in one of her favorite activities: me scratching her back.

Beth has not gotten involved with the self-advocacy movement, but she certainly lives in a self-determined way.

So I had to leave the conference a few hours before it ended. But I left in high spirits, revved up by the commitment to social justice I’d seen all around me, and the sense that everyone – especially those who might never have been listened to before – deserves to be heard in this world.

And yes, not just by a sister.

But by a celebrity.

A business leader.

A president.

We will stand up for our rights
We will stand and tell what’s true
We will show the world
All that we can do
- People First, by Karl Williams