Paul Longmore Interview: Part I
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INTERVIEW OF PAUL K. LONGMORE (Installment 1)
BY JESSIE LORENZ
JANUARY 17, 2005 - MARTIN LUTHER KING JR. DAY
JL: I'm here with Paul Longmore who is a professor of history at San
Francisco State University. Hi Paul.
PL: Hi
JL: Paul is also the author of, "The New Disability History," "Why
I Burned My Book and Other Essays on Disability," and "The Invention of
George Washington." That is a lot of books Paul.
PL: Actually I co-edited "The New Disability History," I didn't
write it.
JL: That's right, with Lauri Umansky?
PL: That's right.
JL: I'm curious about the title of this book, "Why I Burned My
Book." That is an essay that you wrote. Tell me a little about that
essay. What brought you to write it?
PL: First of all, giving the title of that essay to the entire book
of essays was a shameless marketing ploy. I just figured that people
would be more intrigued by the book if it had a kind-of provocative
title. That particular essay is the last essay in the book and it is the
one that is autobiographical. I used my own experience dealing with
public policies, mainly work disincentives in public policies, to talk
about the whole work disincentive issue and its place in public policy
and its place in disability rights.
JL: Now you burned your book.
PL: Yeah.
JL: Tell me a little about that.
PL: Well, I had finished my PhD and was starting my dissertation. I
wrote a book. I got a publisher for my book, "The Invention of George
Washington." The publisher was the University of California Press.
Then I discovered that if I got any royalties from the sales of this
book I'd be penalized in terms of my eligibility for Supplemental
Security Income. More important than that my eligibility for public
health insurance, Medical, (which pays for my ventilator) and also my
eligibility for In-Home-Support-Services (which gives me money to hire
people to help me in my home to do housekeeping and personal assistance
tasks) would be compromised. So I started writing letters to people in
Washington, most importantly to the Commissioner of Social Security,
saying Congress just recently did away with a lot of these work
disincentives, so at this point I'm now permitted finally, I'm now
permitted to go to work and earn a living if I can get a job. And,
depending on my income, I may remain eligible for these very costly
health insurance and in home assistance.
JL: So tell me a little about your in-home-support services. Tell
us what a day in the life of Paul Longmore is like?
PL: I have a significant physical disability that requires a lot of
physical assistance with daily chores and activities. So, because I
don't use my arms and I use a ventilator a lot and I ride in a
wheelchair there are a lot of housekeeping chores I can't do. I need
assistance with things like shaving and stuff like that. I need
assistance setting up my ventilator equipment so that I can use it, all
of those kinds of things. So I employ people, personal assistants, in my
home to do those tasks - to assist me - with those tasks. That is
extremely costly. It's an enormous amount of money.
JL: How much would it cost if you were paying for something like
that out of pocket?
PL: Around $30,000 a year.
JL: Wow!
PL: In addition to that the purchase price or rental cost of my
ventilator is also very high. That is, at this point, about $15,000
maybe a little more.
JL: So here you were kind-of this success story: someone with a
disability, educated, trying to start out in the workforce and yet you
were being forced into poverty.
PL: Well, all of the way through graduate school all the time I was
working on my PhD these work disincentives were still in place and I
kept wondering why I was trying to pursue an academic career when the
fact was if and when I did get a college teaching job I would lose my
eligibility for all of this assistance, but I wouldn't be earning enough
money to replace the assistance from the government that I would lose.
Well, in 1988 Congress did away with most of those disincentives. That
meant that I could take a teaching job as long as my earned income
stayed below a certain threshold I would still be eligible for that
financial aid. The problem was that I found out that if I got royalties
from the book, I was about to publish, that would penalize me and I
might, at least for the time being, lose my eligibility for benefits.
Again I would not be earning enough to be able to replace what I would
lose.
JL: I think it is really important that our listeners out there,
particularly young people, hear about the organizing that you did and
the advocacy that you brought forward around this issue. It was just an
issue that impacted you at the given time but you were able to create
change for the people who came after you.
PL: Millions of working age adults with disabilities were and
continue to be effected by work disincentives in Supplemental Security
Income and Social Security Disability policies. What I did after I had
written a long series of letters and received a long series of responses
from the commissioner... I finally realized that they weren't going to
do anything to change the policy. So I felt that I had the
responsibility to try and get some publicity for the reform effort that
had been underway on the part of disability rights activists years
before I got involved in this issue. It struck me that doing something
dramatic might get some media attention for an issue that, let's face
it, is complicated, kind-of dull, and is just not the kind of thing that
the news media would ordinarily pay any attention to. So if I could do
something really dramatic then I would get some kind of attention. My
book was scheduled to come out in the fall of 1988 and just before that
publication I decided I would hold a public protest in front of the
federal building in downtown Los Angeles and I would burn a copy of my
book.
JL: "The Invention of George Washington."
PL: Yes. Which is now in paperback by the way and they make lovely
gifts for graduation or Christmas.
JL: It is also at the SF public library.
PL: Is it?
JL: Yes. I have most of my interns read parts of your books. I had
one go to the library to pick up the books written by you. He came back
and was reading and I asked him what he was reading about. He said that
he was reading about George Washington.
JL and PL: Laughing.
JL: I said that isn't really the book I wanted you to get, but
great!
PL: Well mostly I teach early American History. That is what my
degree was in. That is what I was hired to teach. I mostly teach
about colonial and revolutionary history.
JL: So you burned your book in front of the federal building...
PL: Well in the several months proceeding this I contacted a lot of
the organizations in the disability rights movement in LA and a lot of
individuals. I told them what I was planning to do and I asked for
their support. I got a lot of support. I was really encouraged by
that. In fact the participants in the demonstration were a
cross-disability coalition. There were people from the deaf community,
the blind community, and the independent living movement. There were
people from virtually every disability organization in southern
California. A couple of actor friends lead chants. A deaf student from
Pasadena City College who was a commercial art major made placards with
slogans I wrote. And a friend of mine loaned me his barbecue from his
back yard and in fact I went over there and practiced how to set fire to
my book without setting fire to myself. So we rehearsed that...Then I
had written a statement that I read at the time of the protest just
before I burned my book and the gist of it was that work disincentives
on the part of the government turned the dreams of many people with
disabilities into ashes. And then I set fire to my book.
We got a good deal of news coverage. We were on the front page section
of the LA Times. We were on two evening news broadcasts. The result of
our protest was that an amendment was added to a bill that was pending
in Congress and that amendment dealt with some of the things we were
protesting. As a result of the amendment the disincentives about
royalties for publications and honoraria from public speaking were
dropped from the SSI policy. Unfortunately the Social Security
Administration refused to accede the two other changes we wanted. They
didn't allow Congress to eliminate the disincentives against
scholarships, fellowships and research grants. Those disincentives,
those penalties for SSI recipients are still there in the policy. So a
lot of students trying to get a college or graduate school education
still get penalized if they get scholarships or fellowships and a
growing number of disabled scholars are trying to pursue academic
research careers and this policy means that if they get any grants
they'll be penalized. So we've still got changes that we need to make.
JL: Do you see those changes on the horizon? Often times there is
talk about young people not being involved in civil rights movements.
Today is Martin Luther King Day whether that involvement be the civil
rights for African-Americans, or immigrant rights or in disability
rights. Do you see differences in the way people were involved back in
the day as compared to how they are or are not involved now?
PL: I continue to see positive developments and activism on the part
of some younger people but the fact is whether we are talking about
today or yesterday there have always been a relative handful of
disability activists as compared to the enormous population of people
with disabilities in the country and, in fact, in the world. One of the
tasks that is always before us is how do we mobilize what is potentially
an enormous political constituency?
JL: That is true. Because when people think of people with
disabilities they often think of people that look like you and me -
someone who uses a wheelchair or someone who cannot see.
PL: Yeah.
JL: Yet it's such a much more broad patchwork of people.
PL: On most college and university campuses these days people who
are blind or who have mobility disabilities are a small fraction of the
constituency of students that get services from disabled student
services programs. The vast majority - the largest groups getting those
services are students with learning disabilities and students with
emotional disabilities. They make up the great bulk of students with
disabilities getting those services. Because those are non-apparent
disabilities except in certain circumstances, often times students with
those disabilities, like people with those disabilities, try and pass.
Unfortunately it means that they struggle along in silence hoping that
they can get what they need without having to reveal their situation or
identify with any people with disabilities.
JL: That is why I think it is so great that you and I get this
opportunity to sit down and talk about some of the issues in your books.
I think that it is important for people to understand that we have a
collective history that is so rich and goes back to the founding of this
country and before. I have a quote here from Douglas C. Baynton from
your book. It says, "Disability is everywhere in our history once you
know where to look for it, but it is conspicuously left out in our
written history." I think that is so true.
PL: You know Doug Baynton is one of the really talented younger
historians who is working in the area of disability. There are a
growing number, some with and some without disabilities who are
committing themselves to the development of disability history. It is a
history that has long been hidden or misinterpreted and is now being
excavated. The essays in the collection I co-edited, "The New
Disability History," represent some of the first fruits of what is
really good, solid, important historical scholarship on the history of
people with various kinds of disabilities.
JL: It was really interesting to me to read about the history of
people who are deaf and their struggle to try to define themselves and
to choose the way they communicate. Can you talk a little about that?
PL: Yeah. In the middle of the eighteenth century the first school
to educate deaf people was founded in Paris, France by a priest who
discovered that, in fact, there was a deaf community in Paris that had
its own sign language, and he learned their sign language, and that
became the mode of communication and the mode of instruction in that
school. From that school there proliferated schools all across southern
Europe and then to the United States in the early nineteenth century.
Out of those schools in France, and other parts of Europe, and then in
the United States came graduates, from those schools, using the sign
language that they developed. They created deaf communities with their
own churches, press and social clubs and finally political
organizations. In Brittain and Europe and then in Germany another
approach to deaf education developed in the same decade that was based
on the premise that deaf people should not sign. They should learn to
lip-read and speak. They had to do that in order to be integrated into
hearing society. The problem was that for a lot of deaf people,
especially those who lost their hearing before they acquired a spoken
language or were deaf from birth this was totally impractical. The
oralists, as they came to be referred to, insisted that because signing
was easier deaf students would resort to it. So as a result sign
language had to be suppressed in the oral schools starting in the late
nineteenth century and this went on especially in the early twentieth
century, especially in US deaf schools. The oralists became in control
of the schools. Deaf education in the United States had been
exclusively based on sign language, but the oralists tried to suppress
it as much as they could.
JL: So you mean if you were a student in a school for the deaf back
at that time you would be forced to speak... to learn how to speak?
PL: Right and you would be punished if you signed. If you were
caught signing you would be penalized.
JL: Wow!
PL: And you would be stigmatized too. You would be shamed for using
sign language. You would be told that sign language was not human - it
was animalistic. It was wild gesturing and not a real and meaningful
language.
JL: There is always that shame thing isn't there. Shame us for
being different, shame us for not being normal. So what happened?
PL: For several generations oralists dominated American deaf
education and pockets of resistance existed in some schools and at
Gallaudet College that finally became Gallaudet University. Finally in
the 1960's and the 1970's linguists who studied sign language began,
through their research, to verify that signed languages are, in fact,
authentic languages just like spoken languages and written languages.
Meanwhile, the deaf community was internally strengthening themselves
and trying to regain control of its community and culture - particularly
their schools. Deaf schools were the focal point and the origins of
deaf culture.
Finally, the culmination of this movement, this deaf resurgence,
culminated in the 1980's with the demand, on the part of the deaf
community, that there should be a deaf president of Gallaudet university
in Washington DC. Gallaudet University is the premiere institution of
higher education for deaf people in the world. It was really the center
of the deaf community in the United States. In 1988 the Board of
Trusties at Gallaudet, which had a majority of hearing members, decided
to appoint another hearing person to be the President of Gallaudet. Now
this person did not know sign language. In fact this person had no
experience with the deaf community or deaf people.
JL: Oh my goodness!
PL: There was an organized protest...
JL: Can you imagine the president of the NAACP going in and having
no knowledge of the African American Community?
PL: It would be like the president of Howard University in
Washington being white and not knowing anything about African American
culture or having any contact with African Americans prior to taking
over that position. But that's what happened at Gallaudet University.
Deaf students, supported by the deaf community, and a lot of hearing
people from outside that community engaged in a protest demonstration
that took over the Gallaudet campus for five days. They got world-wide
press coverage. They shut down the university for that week. And
finally the new president resigned from that position and a deaf man, I.
King Jordan, was appointed to be the president and is still the
president. One of the groups that supported the Deaf Now campaign is
called Deaf Pride. What that indicates is that there is not only an
issue of discrimination and of language rights, but also a sense of
combating that shame that we were just talking about and asserting pride
not despite deafness but as deaf people who have their own way of
functioning in the world and who have their own cultural values and ways
that they prize and have pride in. I think that is reflective of a
pattern that reoccurred in a good many other disability communities and
disability constituencies. People with disabilities have been taught to
be ashamed of what is viewed as a defect. We're taught to feel
humiliated by the fact that we function differently in the world than
most other people. We function in kind-of non-standard ways. What has
emerged in the last generation in a good many disability constituencies
and individuals with a variety of disabilities is a sense of pride in
and a valuing of those differences. They are not inherently defective.
They are not inherently limiting. Many of the ways that many people
with many types of disabilities get their daily lives done is different
- not deficient. That's really an extraordinary shift in the
consciousness of people with disabilities.
Be sure to read the second installment of this interview in the November issue of DELA!
