Home Bound, you talk about Role Models. FDR, Betty Friedan,
etc. Why do you feel so connected to these individuals?
A: I looked up to FDR because he had polio,
like I did, and he had a regular life-like I wanted. I saw Betty
Friedan as a teacher. Her work truly did give me the words to
describe the disability situation.
Q: Your book is a memoir, but it reads like
a novel. When did you decide to chronicle your life, and how did
the book come about?
A: I found that when I tried to educate people
about disability, they understood it best when I illustrated with
stories about issues such as inclusion and peer support. I was
able to develop those memories into stories, and I learned from
them. I hope others can learn from them, too.
Q: You talk about the disabled as a "minority
group" with its own culture and traditions. What can you say about
this sense of "community and belonging"?
A: It is almost easier to talk about the lack
of community or the sense of being a stranger. Often disabled
people don't feel they belong to their families because their
families are not disabled. We can't share our experiences because
they are different. Sometimes it's hard finding disability community
but you know it as "home" when you get there.
Q: You describe Warm Springs as an institution
that was "liberating." What do you remember most about your stay
A: I remember being able to do everything: go
to the dining hall to eat, go to the movies, and church. To me
it was living a regular life. I did not get to do those things
very often at home. I also remember the opportunities to meet
people from other countries and famous people like John F. Kennedy.
Q: An important point you make in your book
is that "everybody needs assistance;" we are all, at times, helpless.
How do you feel people can be more compassionate to others?
A: The words "helpless," "compassionate," and
"caregiver" bother me. What if one morning your caregiver doesn't
care whether you get dressed and out of bed? The executive who
has his secretary provide coffee is not helpless, nor is the secretary
a caregiver. Franklin Roosevelt should not, and I should not,
have to depend on someone who "cares" but rather someone who is
responsible for doing a job.
Q: You comment about wanting "to be like
everybody else" and being independent with a certain amount of
control over your life. Do you feel you have achieved this?
A: Yes, I feel I have as much control over my
life as anyone can. I know my activism cannot stop until we are
sure no one will be able to take that control away because I get
older or become more disabled by age.
Q: One encouraging aspect of your life has
been overcoming other people's prejudices towards disabled people.
You write: "People handicap us because they do not see us as capable."
How do you respond towards people who try to thwart your efforts?
A: One thing I've learned about disability is
that you cannot tell what people can do until you get to know
them. Don't assume. I know a lot of people who had polio; we're
all different-we're similar but different. I do wish people had
realize what an impact their misjudgments would have on my life.
I never wanted to be a ballerina. I wanted to be a teacher and
a writer and I was not too disabled to do either.
Q: What moment for you was the turning point
in your life?
A: Getting involved with ALPHA made me deal with
my feelings about disability community and whether I belonged-or
wanted to. Getting involved with VISTA gave me the tools I needed
to feel I could be an activist.
Q: You mention that it is easier to be "political
than personal." Can you explain what you mean by that statement?
A: Believe it or not, I've always been uncomfortable
talking about myself. I thought people would say, "Well, that's
just Cass Irvin. That's her problem." But when I got involved
with a disability organization, I found lots of people had the
same problem so it wasn't just mine to solve.
Q: You do have self doubt, and yet, you
come across as a very positive woman. Can you discuss this paradox?
A: I don't know where that "positive outlook"
comes from but I'm very glad I have it. I'm a Taurus with Libra
rising so I tend to see the other side.
Q: Your relationship with your parents is
a recurring thread of the booka real mix of love and pain.
How have you (re)-thought about your family while you wrote this
A: I did come away from this experience realizing
how much I wanted to be like my mom and how comforted I am by
her image. I also realized you don't have to like everything that
happens to you but you can't blame people for being who they are.
For the most part, my parents did the best they could for me.
Actually, they did a great deal for me but they couldn't be in
control of everything.