JEFFREY BROWN: And finally tonight: a love story that sheds light on how society deals with the disabled.
Judy Woodruff has our book conversation.
JUDY WOODRUFF: There are more than 50 million Americans who have some sort of disability, according to the Census Bureau. They range from profound, needing a wheelchair or other assistance with daily activity, to less restrictive, and from physical disabilities to cognitive and emotional.
Rachel Simon has given a lot of thought to their lives, how the rest of society sees them, since her sister is intellectually impaired. She wrote a memoir in 2002 called “Riding the Bus With My Sister.” Her most recent book is a novel, “The Story of Beautiful Girl.” It’s about the lives of two people who meet living in an institution, and it follows them for four decades.
And Rachel Simon joins us now.
Thank you for being here.
RACHEL SIMON, author, “The Story of Beautiful Girl”: Thank you. It’s so wonderful to be here.
JUDY WOODRUFF: So, Rachel, you had written the book about your sister, “Riding the Bus With My Sister.” What do you think you accomplished with that book?
RACHEL SIMON: Gosh.
Well, I was transformed, because I learned that during the course of my life and my sister’s life, there had been some major civil rights development in the lives of people with disabilities. And the major one is called self-determination, that people with disabilities have the right to choose how to live their own lives.
This all started because of the closing of the institutions in which people like my sister were asked to live, forced to live for a lot of the time we have in American history, for about the last 150 years in American history.
JUDY WOODRUFF: So, after that experience, your story, your family’s story, why did you want to write a novel? This is a novel, we should say, about a man and a woman who were in an institution. They met. He was not intellectually disabled, but he had a hearing impairment.
RACHEL SIMON: Yes.
JUDY WOODRUFF: She was intellectually impaired, could not speak.
Why that story?
RACHEL SIMON: Well, why that story and why fiction. I will try to do that why that story first.
My sister grew up at home. My sister did not grow up in an institution. And this was because of all — funny coincidences in my family history. My father actually grew up in an orphanage. And, therefore, he knew what institutional life was like.
And when we were growing up, he used to say, “When you live in an institution, even if someone comes to visit you, which his father did, you know at the bottom of your heart that you’re not really loved. So, no child of mine will live in an institution.”
And this was then the family belief, that people deserve to be out in the world and have the same rights as everyone else and be raised with the family, which my sister was.
I then wrote “Riding the Bus With My Sister.” It led me to do a lot of public speaking. And I met a lot of people who didn’t have the experience my sister had, who had lived in institutions. And I felt like their stories were not being heard. A lot of people in America don’t even know we had institutions for people with intellectual disabilities.
All they think of are people who had psychiatric issues. But there’s a whole separate system of institutions for people like my sister, and we still have them in America.
JUDY WOODRUFF: And the story, you took two people who you have them essentially fall in love, have a baby.
RACHEL SIMON: Yes. Yeah.
JUDY WOODRUFF: And then you follow them for several decades.
RACHEL SIMON: Yes.
JUDY WOODRUFF: Why did you want to do it that way?
RACHEL SIMON: Sometimes, stories find you. This story actually emerged from my pen without me really planning to do it.
I had been thinking for years about writing something about institutions and the people who lived in them from the point of view of the people who lived in them, not the point of view of other people. And one day, I just started writing. I do write by hand.
And it just started coming out that there was the character of Beautiful Girl, also known as Lynnie, who had an intellectual disability and whose parents put her in an institution in the late 1950s, and then the man, who was a John Doe, John Doe number 42, who was deaf.
He actually was based on a real-life person who I discovered in a book called “God Knows His Name: The True Story of John Doe No. 24″ by a writer named Dave Bakke. I came across that book. It was in fact about an African-American deaf teenager who was found in 1945 wandering the streets in Illinois. No one who knew he was. And so he was put in an institution for people who were called feeble-minded.
And he was there for 50 years until he died. And I was so moved by that, I thought I need to write about this sort of a character.
JUDY WOODRUFF: What did — the fact that it’s a novel, the fact that it’s non-fiction — the fact that it’s fiction, what did that allow you to do in terms of telling the story of how society treats people like this?
RACHEL SIMON: Well, as a sibling of somebody with a disability — my sister is only 11 months younger than I am — I have spent my life translating — translating the world for her and translating her to the world.
And so to the extent possible, I understand how her mind works. And to be able to write it as fiction, I was able to fully enter the mind of a character like my sister and the gentleman who is the male character in the story and write it from their points of view, as well as the point of view of an aide who works with them and a retired schoolteacher who ends up being involved in the whole story who we have left out of all of this.
So to be able to write it from multiple points of view, which, as a sibling, is kind of how I have seen the world, that there are all of these people who are involved in the lives of people with disabilities, and the people themselves, and we don’t really give equal weight to all those stories. And we never hear from the people with disabilities.
I wanted to be able to do it from their point of view, see the world through their eyes, and show the world not just how the world treats them, but how they feel about how the world treats them.
JUDY WOODRUFF: You clearly seem to feel that their point of view, the point of view of people with disabilities, is just not understood.
RACHEL SIMON: It’s not given respect. It’s not treated in a dignified way.
They’re infantilized. They’re ignored. They’re made fun of. And I think it’s so incredibly important that if you are somebody who feels a passion for people with disabilities because you have a loved one who has a disability, that you need to go out and you need to fight for their rights.
And I have always felt that way as my sister’s sister. But because I can write, it gave me the ability to do that in a book that therefore has led other people to seeing the world through the eyes of people like my sister.
I’ve had so many people get in touch with me and say, you know, when I go to the supermarket and there’s the guy with Down syndrome who is bagging my groceries, I’m never going to look at him the same way again. Now I want to know who he is.
That means a lot.
JUDY WOODRUFF: Rachel Simon.
The story — the book is “The Story of Beautiful Girl,” your sixth book.
Thank you very much for talking with us.
RACHEL SIMON: Thank you so much. Thank you.