Rachel Simon's Blog

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

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

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

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

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.

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.

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 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.”

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.