ABILITY Magazine: What prompted you to write Riding the Bus with My Sister?
Rachel Simon: I was writing commentary for the Philadelphia Inquirer, and one day I mentioned to an editor that I needed to visit my sister Beth for the holidays but couldn’t figure out how to work around her bus schedule. He asked what I was talking about, and I explained with some embarrassment about my sister’s passion for riding buses. I didn’t understand it and wanted her to have a more conventional life. My lack of understanding and subtle judgmentalism, combined with her independent, strong-willed personality, had led us to grow distant, which was very sad for both of us. I didn’t understand that I needed to learn how to untangle love from control, but somehow I think my editor saw this. He also saw an interesting story, so he told me to ride with Beth for a day and write about it. I’d never ridden with her before, and when I got on that first bus, I was amazed to discover that everything I’d thought was wrong, that that she had a happier, richer, more independent and more social life than I’d imagined she could have. I felt both joy and remorse, and after that day I went home and wrote the piece. It was a big hit and soon appeared around the country. A few weeks later, she invited me to her annual Plan of Care meeting for the first time and afterwards made a spontaneous invitation (a dare, really) for me to ride with her for a year. I agreed reluctantly, and then rode with her for a day or two every couple of weeks. Even though she and I sometimes got on each other’s nerves, as sisters do, I kept learning so much about myself, about her, about self-determination, about the drivers and about life that I started taking notes. The notes grew into a book.
AM: Were you headed anywhere in particular?
RS: Beth’s destinations are more about who she rides with than where she’s going. We did cover the industrial Pennsylvania city in which she lives and its surrounding suburbs many times over, sometimes even riding the same routes a few times in a single day. But because the focus was on the social world inside the bus, I never tired of this.
AM: Can you tell us about this arrangement?
RS: We left her apartment every morning around six o’clock, and returned home around six in the evening. We grabbed lunch and took bathroom breaks when we could.
I’d always ask Beth who we were going to be riding with or where we’d be going, and she’d almost always answer, “You’ll see.” She’d say this in a sly voice, because she knew exactly what lay ahead but wanted to control the show. So I’d just run along with her (and she does run between buses!), sometimes staying on one bus for an hour and having detailed conversations with the driver, and sometimes staying on for only five silent minutes, especially if we just needed to travel from one important driver to another.
It’s really fun to be able to go anywhere all the time, and see the world from that bird’s-eye view. It’s also very physically exhausting. You wait outside or run from bus to bus, in any kind of weather, for 12 hours straight. The Philadelphia Inquirer has given a name to what Beth does; they call it serial bus riding. And I’ve discovered that there are many other people in this country who do it, too.
AM: What is Beth’s world like?
RS: It revolves around the bus drivers. She rates them according to a Top Ten list, like pop singles. If someone rates high, then she’ll call him cool, and that’s the highest compliment she can bestow. And she’s cool, of course. She signs her letters Cool Beth.
In addition to riding the buses, Beth spends her time with her boyfriend, whom I call Jesse in the book. He also has intellectual disabilities. They’ve been together for over a decade, but live in separate apartments and do not intend to marry.
AM: Jesse is African-American and Beth is white. Do they face any additional difficulties because of this?
RS: Sometimes they do have more trouble socially because of this. Whenever I go out with them, I prepare myself for a fistfight. But they stand up for themselves quite well.
AM: How do the drivers and passengers respond to Beth?
RS: She truly loves many of the drivers, and they truly love and care about her. There are also passengers who ask how she’s doing or talk to her about their families. It’s a social world.
Occasionally some passengers yell at her for talking loudly on the bus, for not having a job, for holding onto the front seat, for anything. Beth usually ignores them.
There are also some drivers who don’t like to deal with her. She stays off their buses.
AM: So the drivers and the regular riders on the bus played a role in your experience as well?
RS: Sometimes people keep to themselves, but often you end up talking with one or two people, and sometimes the whole bus ends up sharing a conversation. In fact, sometimes it’s like a giant schoolhouse, with the driver offering instruction or inspiration or comfort. I have a scene in the book where the bus turned into a women’s-only group therapy session. And then there’s the driver who transforms the bus into a comedy club where he’s the star, like Jay Leno doing stand-up.
The drivers are philosophers, anthropologists and caregivers, each in his or her own way. As one of them said to me, “What do you do when you drive a bus? You spend time with people, and you sit and you think.” Each one has a powerful life lesson to offer, and each gives it in a different way. I think bus drivers are some of the world’s most important unsung heroes. They’re amazing.
AM: I hear Beth tried to play matchmaker between you and a bus driver?
RS: She wanted to have a driver for a brother-in-law, so she fixed me up with one. And she was very good at this—he became a very important person in my life. But I don’t want to say too much, lest I ruin the end of the story.
AM: How has Beth influenced you?
RS: During childhood we were extremely close. We’re less than a year apart, and I didn’t think about her as being different—she was just my sister. Then as I got into school and saw how people with developmental disabilities were taunted by other kids, or I walked into a store with her and saw how other customers stared at or laughed at or ignored her, I’d get angry at the world and protective of her. It made me understand ignorance at an early age. It also made me committed to resisting injustice and bigotry and to being more tolerant, I realized, than many of my peers seemed to be.
AM: Was closeness more difficult as you got older?
RS: When we entered adulthood, we grew apart. I didn’t know anything about the social service system that she became a part of, and when she began riding the buses I no longer knew what to talk to her about. This led to my not wanting to see her, which led to feelings of guilt. Conveniently, I had a very busy life as a writer, so I always felt I had a good excuse.
Shortly before I began the book I ended a long-term live-in relationship. Consumed by feelings of failure, I threw myself into several jobs to distract myself. I taught college writing, ran events in a bookstore and wrote for the paper. The more the jobs distracted me, the more I craved the distraction. Then it just became the way I lived. This all changed when I became steeped in Beth’s very social world and kept meeting bus drivers who’d turned their lives around. It made me want to change my own ways. And I did. I underwent major transformations, made major changes in my life.
Beth is fun. She knows how to find friendly, caring people. She draws amazing pictures. And she laughs easily. Sometimes when we’re tired we fall into giggling fits over anything. She also encourages me to laugh at myself. I take things less seriously because of her.
AM: How have your own attitudes toward Beth changed since you rode the bus with her?
RS: I realized that I was impatient with her, and that I’d equated wanting to protect her with thinking I should control her. I stopped wanting to control her—and questioned whether she even needed my protection. This helped me in other aspects of my life, too.
I came to see her as an independent adult with the full range of desires and goals, rather than as a person who needed to depend on me to help her figure things out. I came to accept her life choices. Before I got on the buses, I didn’t talk to people about her bus lifestyle. But then I saw how happy it made her and I straightened myself out. I learned, finally, to untangle love from control.
I’ve always loved Beth, but now I love her without that extra baggage. Now I just love Beth for who she is—a unique, confident, headstrong person.
AM: What sort of attitudes toward developmental disabilities have you encountered throughout your life?
RS: A huge amount of discrimination, ignorance and cruelty. Beth had to endure endless teasing, and there were times when this spilled over to me. There’s a scene in the book where she greeted me when my school bus dropped me off at home, and the kids on the bus laughed hysterically at her. I felt terrible shame and wanted her to wait for me in the house, but I also knew this was wrong and hated myself for feeling that way.
This taught me very early in life that the world isn’t fair and that our society is horribly bigoted. I mean, people get fired for saying any kind of ethnic slur, but you constantly hear prominent entertainers and sometimes even politicians saying, “What a r—–.” I won’t even say the word here, since it’s the dirtiest word I know. I immediately lose respect for anyone who says it, and I’ll tell them that to their face. How can anyone remotely think this is acceptable behavior?
As for the ignorance, it doesn’t extend only to nasty comments. It also comes when people tell me that Beth, simply because she has an intellectual disability, must be one of “God’s true angels.” Of course she has angelic moments—but believe me, she has many devilish ones. Everyone does, whether they have a disability or not. To think otherwise is to stereotype her.
AM: What level of support have you found for individuals who have mental retardation or their families?
RS: Support services differ from state to state. For Beth, they’re good, and I really care about and value her aide and case manager. But in some places there can be a waiting list of decades to get services, especially if your parents didn’t get you into the system young in life. This is a huge problem for families, and especially siblings once their parents pass away. It’s also a huge problem when the programs are under-funded.
I struggled a lot emotionally when I wrote the book and sought out a support group to help me. It wasn’t easy to find, because siblings are very overlooked by the support system. Somehow when they say they help families, they almost always mean parents, period. Eventually I found something called the Sibling Support Project, an international program dedicated to the interests of siblings of people with special needs. It’s given me a lot of emotional stability.
AM: What effect would you like the book to have on readers?
RS: I want readers to see people with disabilities as individuals with their own needs and desires and personalities. I want them to drop the ignorance, cruelty and pity, as well as the stereotypes, and to recognize that everyone has a place in society. We all need each other.
I’d like it if readers who have disabilities felt that I was presenting Beth and her life in a true and honest way and were further empowered by her story. Maybe they’ll be inspired by her independence.
I’m hoping that readers who are family members of people with special needs—especially siblings—feel that someone is giving voice to the many challenges and rewards they experience every day. And that they not only feel less alone, but maybe even come together to support each other.
I’d also like it if readers can see that they can change their own lives, too. I’m certainly living proof of that. And I’d like them to realize that they can find inspiration in daily interactions that they might otherwise overlook, as I did with bus drivers—that those small, easyto-miss exchanges could add up to enormous changes in their lives.
AM: Did Beth know you were writing a book? How did she feel about that?
RS: Yes, and she was flattered. But it didn’t have the same impact that it might have for some people, because she’s not a heavy reader. The thing she really liked was just having me riding with her, though she was very proud when the book came out.
AM: Does Beth still ride the bus every day?
RS: You bet.
AM: Do you still ride with her?
RS: Not much. It’s important to her that I ride with any new drivers, so I do. But honestly, it’s grueling work! So I’m usually happier just going to dinner with her and her boyfriend when the buses stop running in the evening. However, I don’t rule out having another bus adventure with her in the future. It truly changed my life, and I’m grateful for that.
For more information or to contact Rachel Simon rachelsimon.com
Sibling Support Project