Rachel Simon's Blog

Could there be a better way to kick off the release of the paperback of The Story of Beautiful Girl than to get interviewed by Judy Woodruff on the PBS News Hour?

Yesterday I flew to Colorado. I’m currently in Boulder, getting ready for a talk tonight. After another talk on Sunday, I begin my book tour on Monday. (To see where I’ll be going, check out my Appearance page on my website.) I’ll blog whenever I get the time.

But earlier this week, on Tuesday, I went to Washington, DC and taped the interview. It was an honor to meet Judy Woodruff, not only because she’s a legendary journalist who I’ve admired for years, but because she has a personal connection to disability.

The interview aired last night, Feb. 9, 2012. To watch it, click on this link. Enjoy!

Family Network TV is a new internet TV channel founded by Susan Stephens, an energetic and visionary grandmother of a boy with cerebral palsy. The shows on Family Network TV focus on families who are living with disabilities, with the goal being to unite the special needs community worldwide. Susan Stephens, Vice President Tara Ecklund, and a team of fifty parent and sibling volunteers have poured their time and love into making this dream into a reality. Family Network TV made its internet debut at the end of February, 2011.

The Family Network TV show “What’s Happening” is hosted by fellow sibling and writer Mary McHugh. Mary recently interviewed me about the genesis of my upcoming novel, The Story of Beautiful Girl, which will hit the stores on May 4, 2011, and asked me to give some behind-the-scenes insights into the writing process. Mary’s interview with me was conducted on Oovoo, an online video chat service, and posted soon after Family Network TV launched, on February 28, 2011.

To watch the fourteen-minute interview, click on the first video below.

And if you like this video and this format, I hope you’ll check out Family Network TV and see the many other programs they offer.

Here’s to a bright future, Susan, Tara, Mary, and all the people who make up Family Network TV! You have my gratitude and best wishes.

The pile of mail that awaited me upon my return home two weeks ago has been opened. Mostly.

The phone messages that were left while I was all over the country have been answered. Pretty much.

The Himalayan mountain range of electronic communication that grew steeper and higher and farther until it touched the deepest blue of the sky and extended well beyond the known world has been assessed. Hiking expeditions have even gone up the first few summits. Though there are many to go, and already, more mountains are forming.

All of this is happening while my sweet, quiet routine, with husband Hal and kitty Zeebee and long work-outs and mugs of tea and a hardback novel in my rocking chair and a spiral notebook in the library – all of which rose tantalizingly in my mind while I was flying from city to city – still await my return.

This is not what people expect to hear. They expect that, having dispatched with my on-the-road commitment to my publisher, I’ve flung off the adrenalin, sense of purpose, extroversion, and list of commitments I needed on the road and simply pulled my regular life back on, as if I were changing from a tailored suit and too-tight pumps to comfy khakis and a much-worn sweater.

But The Story of Beautiful Girl is my sixth book, and, having held other writers’ hands for the twenty-three years I’ve been in the business, I know that the whole year leading up to a book’s release is critical. The writing and editing might be done, and the publisher – in the best of worlds – might be sending out advanced reading copies to reviewers and interviewers, figuring out a marketing strategy, and encouraging bookstores to place their orders. So to the uninformed it would seem that the writer’s work is behind her. However, the publisher – in the best of worlds – can accomplish its goals all the more readily if the writer is a full member of the team, since, among other things, the writer might have contacts in niche markets, or creative ideas for how to reach readers.

In the case of The Story of Beautiful Girl, and as those of you who’ve been following this blog know, my passionate efforts during this pre-publication phase of my novel aren’t simply because I’m the author of this book. They’re also because this is a novel that takes readers deeply into the hearts and minds of two adults with disabilities, like my sister Beth and her boyfriend Jesse, or like the thousands of individuals I’ve met through my talks for my memoir, Riding The Bus With My Sister. It’s also a novel about the moral conflict and selfless devotion of a direct support professional who provides support for the character of Beautiful Girl, like staff people who’ve worked with my sister and others I know. And it’s about a childless, elderly widow whose life suddenly changes when a newborn baby is left in her care. (She is not like anyone I know, though I’ve had some early readers say, “I wish that would happen in my life.”) So despite being fiction, this book is intertwined with many people who mean a lot to me. And I feel I owe it to them to do all I can to generate an audience for this book.

So in the interest of assisting my publisher further – while not spending my usual five hours writing a long, detailed, here’s-everything-that’s going-on blog, thereby freeing me up to keep scaling those endless, snow-capped electronic summits, not to mention doing my hospice volunteering, seeing my sister, and visiting friends in need, such as a wheelchair using writer who just had a terrible accident and is now recovering in a rehab hospital – I’m devoting this post to a few book updates, and one very personal thrill.

BJs, the wholesale club, has a book club, and they just announced that The Story of Beautiful Girl will be their May selection.

Publisher’s Weekly, the influential trade journal, has given the book a glowing review. Please note that this review comes with a Spoiler Alert, so read at your own peril by clicking here.

ANCOR is a trade association advocating on behalf of 800 private providers of services for 500,000 Americans with disabilities that employ over 400,000 direct support staff in almost every state in the country. To help me spread the word about The Story of Beautiful Girl, they’ve posted an informative page on their website devoted to my book. If you’d like to support ANCOR, please order your book through their site.

I have had many discussions with organizations that will be hosting me at upcoming talks, and then I’ve updated the Appearance page on my website accordingly. The current page reflects only what’s been finalized as of today. I expect to add many more events as the time of publication nears.

My publisher has been busy too. Mostly this is with things I don’t know or feel the need to ask about. But one thing I do know about, and adore, are four terrific animated ads they’ve created.

One of these ads, the one with the white background, hints at the plot; the others include endorsements from some of the booksellers I met and dined with during the pre-sale tour, as well as the wonderful writer John Grogan, author of Marley and Me and The Longest Trip Home. These ads, which have been posted in in several places online, have continued the publisher’s mission of building pre-publication excitement about the book.

To view these ads in their animated form, just click on one and wait a moment for the animation to begin. You can also add them to your own website by right-clicking on an animated ad to download the file to your computer, then opening it using Quick Time, and following the same procedure you would when adding a regular image.

But my life hasn’t been just about The Story of Beautiful Girl and seeing friends and others in need.

Despite my not being able to return to a contemplative routine, I have celebrated a momentous occasion with my husband Hal: the debut musical performance of the trio he plays in, Puddles In A Gondola. On February 13th, Hal and his two fine musician friends, bass player Matt Stein and violinist June Bender, played two improvisational pieces at the Highwire Gallery, an art gallery in the Philadelphia neighborhood known as Fishtown.

I know what you’re wondering right now. What type of music did they perform? Those of you who don’t already know about Hal’s unusual, undefinable music from my last book, The House On Teacher’s Lane, might want to prod me with such helpful but ill-suited suggestions as, “Rock ‘n roll?” “Blues?” “Jazz?”

The best response I can give is that, although Hal, Matt, and June all have training in classical music and although their tastes run from jazz standards to English folk, the music they played that night was a blend of many elements that add up to something avant-garde. As you can see in the photos below, in addition to Hal’s guitar, he played an electronic bassoon. He also used electronic looping throughout the performance. Matt and June each stayed acoustic, but added toy instruments (yes, like Fisher-Price), selecting such things as plastic saxophones and flutes at random.

The audience was small but spirits were high. And everyone – especially the guitarist’s wife, who was tired from climbing but invigorated by loving – had a fabulous time.

Philadelphia was bathing in thirty-four degree sunshine when my husband Hal dropped me at airport. I lugged my bags into the terminal, noting that they felt heavier than they usually do when I travel to give talks around the country. I could have chalked the weight up to faulty memory, as I hadn’t done a presentation since the season of short sleeves. My energy level was also a notch below robust, as I’d just fought off a minor case of the sniffles.

But memory and muscles were fine. My suitcases were stuffed like overburdened sleds because I was on my way to Fairbanks, Alaska. There, over the next five days, I would be doing three presentations related to my book Riding the Bus with My Sister. And a trip to Fairbanks in the wool-fleece-and-thermals month of December simply necessitates bulk.

I’d almost squealed with delight when the Fairbanks Resource Agency contacted me in the spring and asked me to speak at their annual gala in December. Although I’d spoken for many service providers that support adults with disabilities and had even done such talks in Anchorage six years ago, I’d never been as far north as Fairbanks. And I’d been to Anchorage in April, right after “breakup,” when the winter snow suddenly melts, and when sunrise is at six in the morning, sunset near ten at night. I was now heading into a land of subzero temperatures, where daylight would commence after ten in the morning and depart by two thirty in the afternoon.

I made my way to the gate for the first of my flights, remembering Hal’s reaction when I got the invitation.

“Are you kidding?” he’d said.

“It’ll be an adventure!”

“Fairbanks in December?”

“If Jack London could do it, so can I.”

He’d made a scrunched-up face that he hadn’t unscrunched in the months since.

To be fair, Hal’s reticence about this trip was not simply the result of him envisioning himself slogging through a wind-swept, snow-drifted, dark-as-sleep nowhere. It was more a result of him knowing me.

I am not just someone who gets cold. I am someone who often wears a jacket in the summer, and in the winter I wear coats even inside the house. I get a chill deep inside my chest, and once it starts, there seems little I can do to stop it. This isn’t just imagination: touch my hands during these episodes, as people inevitably do when I meet them at talks, and you’ll be grabbing onto an ice glove.

How, Hal and other caring friends wondered as the day for my trip neared, would I possibly endure the extremes of a place like Fairbanks? Which, we found out the night before he took me to the airport, can get as cold as seventy below? And where sunshine itself is powerless to induce warmth? “You’ll spend the rest of your life thawing after this,” he said.

But how could I say no? I would be seeing a faraway land close to the tip of the globe, where all that is familiar to me about light and dark, winter and summer, ordinary and extraordinary would become but a memory, and new rules of day, night, cold, time, and even the colors of the sky would take its place. How could I not take the opportunity to shake up all I know about my relationship to things so fundamental, I can barely imagine my consciousness without them?

Besides, I kept wondering: what kind of people actually live there?

I got my first answer to this question soon after I arrived at the gate. My flight, which was supposed to depart at 1:00 PM, was delayed until at least 3:00 PM. This one change would prevent me from making my second connection, and so I spent the start of my trip rescheduling all my subsequent flights. My original plan was for three flights that would last fourteen hours. Now I would be taking four flights lasting twenty-two hours. A test of mere stamina became a test of endurance.

This is what Alaskans live with, I understood as I hunkered down for my first, second, and third waits. Not just snow and ice and wind and midnight sun and daytime night – but the need to expect the unexpected. And all the patience and fortitude that might be required.

I can do this, I thought, hauling my carry-ons through the concourses at Chicago O’Hare and Seattle-Tacoma International and Ted Stevens Anchorage Airport. Each time my effort proved harder and more laborious, and soon I was cursing myself for not having crammed even more into my checked bag. But then I’d think about the thousands of intrepid individuals who made this journey before the age of flight. My pitiful twenty-two hours would bear little resemblance to the months, or years, of hardship they endured on rail, stagecoaches, horseback, and ships. I told myself to enjoy the luxury of dozing on a seat in an airport, with music and televisions blaring, and babies crying, and, in Seattle, a water fountain that blasted loud glug-glug sounds whenever it was used. Stop kvetching, I told myself. Be tough.

Fortunately I forgot that sometimes, when people made the trek to the Last Frontier, the duration and the physical demands were so great, they fell ill, or even worse. This could happen to the hardiest of souls. So it was quite possible it could also happen to a twenty-first century city girl from the Northeast.

Who’d just—she thought—gotten over the sniffles.

And whose final, fourth flight—the one she’d had to reschedule herself onto—required her to walk across the tarmac in twenty below, schlepping the unbearably leaden carry-ons, so sleep-deprived and so confused by the darkness and the snow that she almost walked in the wrong direction.

So by the time I landed in Fairbanks at 7:00 AM (11:00 AM to me), my fate was sealed. I thought I was just exhausted from the four thousand mile ordeal that took me from thirty-nine degrees latitude to sixty-four degrees latitude and from thirty degrees Fahrenheit to twenty-two below. But my exhaustion was actually a portend—and the proof that my curiosity, adventurousness, and Jack London admiration surpassed the current limits of my constitution.

But for the first day I gallivanted about, unaware that my immune system was about to shut down. I was tired but with such a brief period of sunlight, I wanted to see all I could. After all, I immediately realized that Fairbanks was not what Hal and I had envisioned, and I realized I wasn’t just in a land of cold and dark. I was also in a land of surprises.

For starters, this was not a windswept, snow-drifted, dark-as-sleep nowhere.

There was, in fact, no wind—there rarely is in Fairbanks, I learned. Nor were there snow drifts, because Fairbanks tends to be too cold for snow; the more common weather challenge is ice fog, which so impedes visibility that it’s one of the few conditions that might close schools for the day. The terrain was mostly flat, and I didn’t even see mountains in the distance.

This was not a nowhere, either. It was a place with four military bases, a large university, a museum that’s an architectural wonder, multi-lane roads that pass the same stores we have in Delaware, a population of over thirty thousand—and more people who’ve relocated there from all over the country than I can remember seeing anywhere else. In fact, I heard almost every kind of accent a person can hear in America.

And whether they came from New Jersey, Long Island, Minnesota, Phoenix, Colorado, or California, no one I met, and no one I saw, allowed the weather to inhibit them in the slightest. They went to jobs and stores and coffee shops and movies and everything you can think of just as much as anyone in a warmer climate.

They did it all without the bulky clothes I’d schlepped across the country, preferring layers topped by sweatshirts or jackets when they were outside. And, when they were inside, a significant number of people wore t-shirts and short sleeves, even if the rooms were cool. How was this possible, I found myself asking over and over. To which the answer would inevitably be, “You just get used to it.”

I spent most of my first, still-healthy day with my escort, Eva Norwood, Community Development Director for Fairbanks Resource Agency. She picked me up at the airport, drove me to my hotel and then, over the course of the day, around Fairbanks. We rode in her trusty station wagon, fleece blankets on our laps, a horizontal crack across her windshield. “It’s impossible to avoid the cracks,” she said as we made our way along the snow-slicked roads—her car, with its studded snow tires, never skidding. “They cover the roads with gravel, and the little pebbles are always flying into your windshield. You can spend all winter repairing it, so I figured I’d just wait.”

Gravel-strewn roads and fleece blankets were just two ways people made their peace with driving in Fairbanks. In the interest of keeping their engines warm, they also leave parked cars running while they’re inside, as I discovered when Eva and I went to lunch at a packed Thai restaurant. They might even have upgraded their cars to include remote starters, which they have to reactivate every two hours. Those of more modest means can plug their cars into the engine block heaters that dot many, but not all, of the parking lots I saw.

The highlight of my tourist expeditions came that first afternoon, when Eva brought me to the Museum of the North. Located at the university, the striking building was designed to convey a sense of Alaska, with shapes and spaces evocative of alpine ridges, glaciers, and whales. The collection was equally stunning. One enormous room takes visitors through the five major areas of Alaska, each with its own history, animals, folk arts. Eva had once been a docent here, and by the end of my private tour, I had a vastly enriched appreciation for the state, and the resourcefulness of the people who’d inhabited it for millenia. Other rooms featured artwork by classic and contemporary Alaskan painters and sculptors. (At the end of this blog, I have additional photos I took while I was there.)

And then there was a room unlike anything I’ve experienced anywhere. Called “The Place Where You Go To Listen,” and created by composer John Luther Adams, it is a continuously changing sound and light art installation—with both the visual and the audio experiences derived from, as an article in the New Yorker once put it, “information from seismological, meteorological, and geomagnetic stations in various parts of Alaska…fed into a computer and transformed into an intricate, vibrantly colored field of electronic sound.” The sound on the day I visited hummed and tom-tommed, with harmonizing echoes like a choir in a cathedral; the colors were magenta shading into deep red. It differs at every visit, Eva told me; sometimes you hear the sun create more harmony, the moon make dapples of sound, and the Northern lights ring across the ceiling like bells. The room reminded me of my beloved light tunnel in the Detroit Airport, which I wrote about in The House On Teacher’s Lane. But this was a tiny space, and the sounds and lights weren’t pre-set; they were happening in real time, reflecting the current state of this corner of the planet. I could have stayed in there forever.

But the sun was setting, and as we emerged from the galleries in the museum and looked out the windows over Fairbanks, I learned that I needed to correct yet another misunderstanding. I’d thought of this part of Alaska as a place of extremes. Standing beside me at the window, though, Eva pointed out that it’s a place of subtleties.

At this time of year, the sun doesn’t rise, or set, in the way it does back in the Northeast. Instead, it stays low along the horizon. So the sky is a study in golds and pinks and pale blues—which then reflect on the snow. “We don’t have white snow here,” she told me. “You think it’s white until you really look and see it’s not.”

Later, when I went out for dinner with three other people affiliated with Fairbanks Resource Agency, I learned more about subtleties. “We don’t have real darkness here,” there told me. “You think it’s dark but it’s not.” I asked how that could be; when I looked out the window, it sure looked like my idea of night. “Yes,” they said, “but with the snow reflecting the stars and the moon, we don’t really have dark skies.” Not the way the skies can be dark in, say, rural Hawaii or Arizona, they added, where they sometimes spend the winter, and where the nights are so completely dark that they actually feel scared.

In Fairbanks, they added, they never feel scared. Rather, they feel at peace with nature—and embraced by everyone around them. “It’s one big family here,” they said. “If you see someone broken down on the road, you stop to help. That’s just the way it is.” They all moved here from the lower 48, and love Fairbanks so much, they never want to live anywhere else.

I went to bed that first night, amazed at how wrong I’d been about this place, and eager to learn so much more.

But by the next morning, my immune system had surrendered. I woke with a ferocious sore throat and thudding headache. I still hoped to get out to see other sites, to stand a chance of catching a glimpse of the aurora borealis, to meet new people and learn more surprises.

I did manage to have a few more conversations. During a marvelous dinner with Emily Ennis, Executive Director of FRA, I learned she entered the field decades ago by without training, family ties, or preconceptions; she just walked into a room of adults with disabilities in Fairbanks who needed to be occupied during the day, and instantly understood that they were full, whole individuals desirous of living meaningful lives. I also connected with a waitress in my hotel restaurant who was the sister of a woman with a disability, and who spoke tearfully about her sister’s transition from living in the state institution to a community setting. Politics also crept into some discussions. Yet even though folks in the lower 48 seem to think immediately about Sarah Palin when they hear the word “Alaska,” the people I met were less inclined to talk about her than about the recent, contentious Senate race, which Lisa Murkowski won over Joe Miller by a write-in vote.

I also managed to get through all three of my events—a book discussion, a visit to a writing class at the university, and the big, fancy gala dinner. I enjoyed all three, and I think I satisfied my audiences at each.

But my tourist expeditions were behind me.

So I spent the rest of my time in Alaska in my hotel room, savoring yet another unexpected aspect of this part of the world. In the dark and the quiet, it is easy to sleep. Your dreams rise and fall like whales, your thoughts beat steadily as the bells of the Northern lights, and your feelings ease through you as subtly as horizon light.

I am no Jack London. I would have made a frail pioneer.

But I’m hoping my host asks me back, and I’m told they probably will. I’ll be keeping my sense of adventure warm until then.

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 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

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 week, I had a magical trip to Orlando.  Yes, I was in Disneyworld, but I was not there for vacation.

The main reason I went to Orlando was to do a presentation at the National Council for Community Behavior Healthcare Conference.  Since we still had snow on the ground in Delaware and the temperature in Orlando was seventy degrees, I was particularly happy to go.

My host was Core Solutions, a software company for the behavioral health and human services industries.  I appeared for a special event in their hospitality suite, where I showed clips from the movie adapted from Riding The Bus With My Sister, talked about the real experience I wrote about in that book, and signed complimentary copies of my book.  The attendees included the parent of a woman with disabilities and a self-advocate, both of whom shared their own stories.  As often happens at these events, I laughed and I cried, and I came away deeply moved.

But there was an additional reason for why my trip was more than just memorable – it was magical.

For the past several months, I’ve been corresponding with one of my readers, Lily Grinsberg.  The mother of three sons, two of whom have disabilities, Lily is devoted to exploring all avenues to help her children.  She also wants to share her insights, so she runs programs where she talks with guests about her recent discoveries.  (You can read more about her on her Double Rainbow website.)  As luck would have it, when I went to this conference, she happened to be in Orlando with her family for a vacation – the twenty-eighth one they’ve taken to Disneyworld!  We arranged to visit.

We met in her hotel lobby, falling into a big hug as if we were old friends – which, because she knows me through my books, and I know her through her life mission, we pretty much are.  After so many emails, I finally got the chance to hear her story in person, and to learn about the many fascinating things she’s involved with.  These include Nordorff Robbins Music Therapy, a music therapy that nurtures people of all levels of ability to build well-being; Camp Acorn, a recreational program that builds confidence and self-esteem in children and adults with multiple disabilities; and Radiant Awareness, a form of therapy that inspires joyful awakenings and inner connection.  All of them look terrific.  (For contact information about Nordorff Robbins, see the comments for this post.)

Then we went to dinner, and I got to meet her whole family.  The love in this family is a sight to behold.  The father spontaneously hugs his sons.  The typical son shares a close bond with his brothers.  And everyone is close to the personal assistant for the oldest son.

Here’s a photo of Lily’s son, meeting up with Donald Duck, followed by a photo of Lily and me.