this lecture >>
I am thankful for my luck in life. Many wonderful colleagues, friends
and family have supported my work in so many ways. I thank my husband,
Harvey, with whom I have shared a life of love and the best of friendship;
my mother, Irene, who taught me everything about individual responsibility;
my sister, Katherine, from whom I learned the importance of being
true to myself; my two dads, Ernest and Leonard, who both taught
me how to laugh and how to let go; my nephews, who constantly remind
me to keep an open mind; my family and friends in England who keep
me in touch with my roots; my husband's family who welcomed me to
this country with generosity and continue to demonstrate the best
of America; my friends in Australia, Canada, Denmark, France, Germany,
Jamaica, Kenya, New Zealand, Switzerland, and Uganda, who give me
perspective on the universe; my friends scattered all over America
who have given me the gift of hospitality and the opportunity to
learn about almost every state in the nation; my California friends
who have shared much fun and laughter and provide warm support for
life's turns; my colleagues at SBCC who have taught me about professional
excellence and commitment; my colleagues around the globe who strive
for a better world on behalf of persons with disabilities; and my
brilliant DSPS family of professional colleagues, Susan, Steve,
Mary, Laurie, Joe, Henry, Gerry, Eric, and Angela, with whom it
has been a joy to share my professional journey at SBCC and teamwork
at the highest level. I thank the DSPS students who remind me every
day of the joy of discovering the complex truth of each individual.
I thank my colleagues who provided technical, academic, and administrative
support for today's presentation:
Tom Zeiher is my smiling, reassuring media expert.
Jason Thornell gave hardware and software technical support.
Joe Thomson is my photoshop guru and kind graphics consultant.
David Wong matched sound to visuals for the pre and post lecture
Tom Garey moved forward discussions and plans regarding future accessible
theater design - and he advised me on my lecture outfit!
Jason Flynn amplified my quiet voice, and coordinated staging and
lighting with experienced aplomb.
Jeff Barnes is my trusty videographer.
Ron Adler and Mary Wiemann gave me the best of their Communication
Karen Sophia and Grant Lepper lent their creative energy to the
invitation and program.
Beverly Schwamm coordinated the reception and flowers.
Kay Bruce provided publicity and photos from the past.
John Barron drew my friendly, funny, flying pig cartoon.
Linda Morse provided professional real-time captioning.
Deborah Lewis joined us from L.A. to provide expert audio description.
Pam Lasker provided theater access solutions in a challenging setting
with a smile and can do attitude.
Jo Black not only interpreted today but also has provided a quarter
century of sign language interpreting at Santa Barbara City College!
Dr. Peter MacDougall, President Emeritus of SBCC, gave twenty-one
years of supportive leadership for DSPS.
President John Romo, Vice President Jack Friedlander, and Dean Marilynn
Spaventa are my current administrative team. They are unparalleled
in our system for the level of importance they place on educational
support programs for underrepresented populations.
Last, but not least, I thank my wonderful colleagues who trod this
path as faculty lecturer over the last 24 years. I particularly
treasure the memory of David Lawyer, our eighteenth faculty lecturer,
who died earlier this academic year. David and the other faculty
lecturers gave me such wise advice.
dedicate my lecture to Dr. Elaine Cohen. Elaine was my colleague,
friend, and mentor during my formative years as Coordinator
of Programs and Services for Students with Disabilities at this
wonderful college. Many of you knew Elaine and worked closely
with her, but for those of you who didn't know her, Elaine was
the kind of person that would meet you with the warmth and humanity
she showed to each and every individual. Elaine modeled an intelligent,
open-minded response to the needs of a diverse population. She
also had the leadership skills and courage to be a change agent
for our college. Elaine faced her own disabilities and medical
challenges with grace, dignity and a zest for life.
Whether Pigs Have Wings:
Disability and the Search for Reasonable Public Policy
Dr. Janet Shapiro, Ed.D.
Professor, Disabled Student Programs and Services
was deaf when he composed the beautiful Ninth Symphonythat I played
as you entered the theatre. In this final movement Beethoven expresses
his vision of freedom, equality, and democracy by creating a memorable
melody for Schiller's poem "Ode to Joy." When Beethoven
conducted this piece he could not hear the music or the sound of
clapping. At the end of his concert he had to turn around to face
the audience so he could see hand movement. At the end of my lecture
I invite you to vary your clapping with visual applause used by
and for people who are deaf. Raise your hands in the air and turn
them side-to-side. It's rather like a royal wave. This is your chance
for a rehearsal!
The most wonderful aspect of being faculty lecturer is the opportunity
to publicly acknowledge my support system of colleagues, friends,
and family. I will say a few words of heartfelt thanks at the end
of the lecture at which time I will be acknowledging my twenty-four
esteemed colleagues who preceded me as faculty lecturer on this
stage. Here is your second lesson in American Sign Language. To
say, "Thank you," move your hand from your mouth towards
your audience as though you are blowing a kiss. Thank you. Thanks
to all of you for honoring me today.
And now - President Romo, Board of Trustees, honored guests, colleagues,
friends, family, and students - I give you the twenty-fifth Faculty
"The time has come," the Walrus said,
"To talk of many things:
Of shoes-and ships-and sealing wax-
Of cabbages-and kings-
And why the sea is boiling hot-
And whether pigs have wings."
The poem is from my favorite childhood book, "Alice in Wonderland
and Through the Looking Glass." The author, Lewis Carroll,
was a shy, gentle man with a significant disability in communication.
He had a stammer that severely distorted his speech. Carroll demonstrated
his ability in his eloquent writing, which explored the human effort
to find reasonable sense and order in our unpredictable world. Alice
cannot even rely on her own physical constancy. She keeps changing
"Who are you?" said the caterpillar.
This was not an encouraging opening for a conversation. Alice
replied, rather shyly, "I - I hardly know sir, just at present.
At least I know who I was when I got up this morning, but I think
I must have been changed several times since then."
In this brief exchange Lewis Carroll captures the essence of our
fragile humanity: our inconstancy. We were born to be different.
We are imperfect. Imperfection is the essence of being organic and
Joan Tollifston is a writer who is missing her right hand and half
of her right arm. They were amputated in the uterus before she was
born, by a floating fiber. She writes of the beauty of our imperfect
life is vulnerable; it inevitably ends in disintegration. This is
part of its beauty. When we delve into this mystery of life and
death we discover how porous and momentary everything is. Life is
the way it is, not the way we wish it was, and disability is a constant
embodiment of this basic truth. People react to my missing right
arm. People try desperately to pretend that they don't even notice.
Nobody says a word. People swallow their curiosity and conceal their
discomfort, hoping that the great dream of normalcy is still intact."
prompts us to think back to our childhood and the first lessons
we learned about disability. I remember my natural childhood curiosity,
"What happened to your leg? Why don't your arms work?"
stifled with adult reprimands, "Shh!" Don't stare!"
What did you learn from your first lessons about disability?
We are all in such pain, trying to do the right thing, trying not
to ask the wrong questions, trying to pretend everything is O.K.
I agree with Tollifsten who believes,
"If we need anything in this world, it's honest seeing and
speaking, and the ability to be with the actual truth -including
flawed bodies - and flawed responses."
Some writers suggest that our inability to accept the truth of
our fragile organic state is a cultural issue. Philip Alcabes tells
us, "Americans today are great consumers of the hoax of a risk-free
When I became an American citizen I was presented with Jane Walmsley's
book, "Brit-think Ameri-think." In her opening chapter
single most important thing to know about Americans - the attitude
which truly distinguishes them from the British - is that Americans
think that death is optional. If you jog regularly, eat more bran,
and have a nose job your body will last. Brits, on the other hand,
know the sword of Damocles is suspended above their head - events
must be allowed to run their natural
course - never run for a bus - and
never skip tea."
today in my lecture I want you to reflect on your attitudes regarding
our fragile organic selves, and our disabilities. In our community
there is much debate regarding the negative connotations of the
word "dis-ability." The variations in the meaning of the
word are reflected in the variety of definitions in public policy.
I believe there is respectful value to the label "dis-ability"
as the definition of a social construct. I define "dis-ability"
as society's barriers to the opportunity to demonstrate ability.
We all look for opportunities to demonstrate our strengths and we
all have organic limitations.
of you may argue that we were not all born with organic impairments.
However, any one of us can acquire an impairment in a quick instant:
a slip in the bathtub, a virus born disease, or some condition of
the central nervous system. In many communities we acquire impairments
as the result of war, pollution, or misuse of drugs. As we live
longer we acquire limitations as a result of wear and tear on our
older bodies and brains. Statistics tell us that half a billion
people around the world and one in five Americans fall into this
quirky, lumpy, bumpy, or gnarly category.
In a recent lecture in this theater, Dr. Mel Levine
challenged that statistic. He asked us to consider our brains, with
100 billion nerve cells and 100 trillion synapses. Dr. Levine believes
it would not be an exaggeration to say that the rate of neurodevelopmental
impairment in our population stands at 100%. We are each unique,
complex, and fragile. Is it reasonable that public policy be designed
to embrace our organic ambiguities? Is it reasonable to create public
policy that focuses on the management of our abilities, whatever
they may be? After all, whatever our physical impairments or neurological
quirks, we all still have the same basic desires to find the means
to be successful in our work, in our social life, in our home life,
and in our love life. The challenge is to identify our organic abilities
and have the opportunity to match our strengths to our life activities.
Purpose of Lecture:
Now, students, here is my statement of purpose for today's lecture:
Embrace your organic ambiguities, search past policy, and decide
future policy. While you are reflecting on your fragile, organic
state, we will search through seven models of public disability
policy from the past. The goal of the lecture is for you to decide
what you believe is the most reasonable public disability policy
for the future and what role you play in influencing future policy.
Having achieved this objective you will have the questions you need
to analyze whether or not the flying pig is reasonable!
The Flying Pig:
a flight from Philadelphia to Seattle In October 2000, US Airways
agreed to allow a passenger to bring a service animal on board.
The flight attendants expected a guide dog. They were amazed to
discover the animal was a large pot bellied pig weighing almost
300 pounds who barely squeezed under the feet of the passenger.
The passenger claimed the pig was trained as a comfort animal for
persons with psychiatric disabilities. However, during the flight
the pig became very agitated, started to squeal frantically, fled
from under the seat, and defecated in first class!
When we're deciding whether or not the pig should fly - or deciding
whether or not to renovate the Arlington Theater so performers like
Itzak Perlman could enter back stage without being carried up and
down stairs - when we're deciding, we are faced with a variety of
choices in how we respond. We ask, "Is this reasonable?"
In order to decide what is reasonable policy for our future, it
is important to review the past. We will consider policy options
from seven American models that I have derived from the writings
of disabilities studies specialists, most notably, Simi Linton,
Paul Longmore, Tom Shakespeare and Joseph Shapiro. I will discuss
policy based on (1) Eugenics, (2) Exclusion, (3) Medical Cure, (4)
Rehabilitation, (5) Civil Rights, (6) Cultural Identity, and (7)
Policy based on Eugenics:
The idea that it is somehow reasonable to end the lives of disabled
people never went away in American public policy.
first model of public policy is based on eugenics. "LebensunwertesLeben"
(life unworthy of life) was the concept Nazi doctors used to justify
their practice of medical euthanasia in order to annihilate over
200,000 persons who were disabled in the 1930s. It is sobering to
read in Robert Lifton's book "The Nazi Doctors" that American
public policy in the 1920s gave support to the German practice of
euthanasia of people with disabilities.
The United States Supreme Court had endorsed eugenics as national
policy, America had laws requiring sterilization of persons with
disabilities, and large corporations such as the Rockefeller Foundation
provided massive funding for eugenics laboratories.
In 1942, Dr Foster Kennedy, president of the American Euthanasia
Society, outlined a proposed policy for killing disabled children,
referring to them as "defective products" and "nature's
In 1991, David Larson, the director of the Center for Christian
Ethics was asked about the ethics of the Baby Fae case, the first
human to receive a heart transplant from a baboon. Larson replied,
"If a primate's capability was higher than that of a human
- say a severely mentally handicapped child - I think it would
be appropriate to support the opposite approach of Baby Fae -
a transplant from a child to save the life of a healthy baboon
The debates rage today. What is a reasonable policy approach to
the debate over the right to die or selective abortion on the basis
ethicist Adrienne Asch, who is blind, argues for the importanceof
a women's right to choose but believes that selective abortion solely
on the basis of disability is wrong and is often based on the lack
of knowledge as to what could be done to establish reasonable policies
to support families and children.
Jack Kevorkian, the "suicide doctor" is seen either as
a compassionate man or as a frightening figure echoing Nazi Germany
rhetoric that people with severe disabilities should end their lives.
The debate over the "right to die" reminds me of two
contrasting stories in Joseph Shapiro's book, "No Pity."
thirty-four years old Larry McAfee was unlucky to be disabled in
Georgia, in a motorbike accident in the 1990s. There was no support
for independent living, home care, transportation or a portable
respirator. Larry was dumped in a state hospital. His insurance
was eaten up. He plunged into a deep depression. He wasn't dying
and he wasn't sick. Larry asked an attorney to help him with his
"right to die." It was chilling that it took the attorney,
the judge, and the public barely three weeks to support Larry's
request and agree that this was "life unworthy of life."
Larry's story with Ed Roberts who was lucky enough to be disabled
in California. He worked successfully to establish state support through
Independent Living Centers addressing the need for attendant care,
transportation, and a portable respirator. Roberts graduated from
Berkeley, became the director of the State Department of Rehabilitation,
married, and had a son, Lee, now twenty-six years old.
Is it reasonable to base public policy on eugenics?
Marie Wade, a poet who has progressive arthritis, expresses her
opinion in this excerpt from her poem "Cripple Lullaby."
I'm homeless in the driveway of your manicured street.
I'm Evening Magazine's SuperCrip of the Week.
I'm a whisper, a heartbeat, I'm that accident, and goodbye.
One thing I am not is a reason to die.
I'm the girl in the doorway with no illusions to spare.
I'm a kid dosed on chemo, so who said life is fair?
I'm a whisper, a heartbeat; let's call it suicide, and a sigh.
One thing I am not is a reason to die.
I'm that Valley girl, you know, dying of thin.
I'm all that's left of the Cheshire Cat's grin.
I'm a whisper, a heartbeat, a genocide survivor, and why?
One thing I am not is a reason to die.
a summary of the first model let's apply policy based on eugenics
to our flying pig scenario. Eugenics policy means the pig would
never board the plane because the person with the disability is
" life unworthy of life." The pig would be returned to
Policy based on Exclusion:
move our discussion to the second model, not as extreme as extermination,
but equally challenging in terms of reasonability: public policy
based on exclusion.
In 1882 the first major American immigration law prohibited entry
to any "lunatic, idiot, or any person unable to take care of
himself or herself without becoming a public charge."
with disabilities born in the United States before industrialization
lived in the context of kinship networks. With the industrial revolution,
provision for persons with disabilities shifted to local government
the beginning of the twentieth century, asylums and workhouses became
the main means of social control. This was the era of institutions
supported by private charities or religious groups. Is it reasonable
for our current government to establish public policy that will
return us to faith-based initiatives?
In 1965 Robert Kennedy reported on the hellish conditions
of state institutions where people with disabilities were excluded
in abject conditions, sitting emaciated and naked in their own feces.
Such expose prompted policies to move residents to community group
It appears that we have replaced the exclusionary
institutions of the past with modern day equivalents: state hospitals,
nursing homes, and prisons. Without government benefit programs,
educational support, job training, or employment, many persons with
disabilities cannot live independently, become homeless, and often
turn to crime.
Skocpol comments that our American government benefit programs have
not solved the policy challenge because their basic design is exclusionary.
The first disability pensions excluded all persons other than disabled
military veterans. These government pensions were justified in terms
of a moral obligation to those who had sacrificed in their service
to the nation. Military veterans had "earned" the right.
In the language of the first drafts of Social Security
Disability Insurance, exclusions were based on worthiness and moral
obligation only to those who had contributed to payroll taxes. The
policy makers expressed concern about abuse and malingering. They
excluded those who did not "earn" their eligibility.
it reasonable that policy regarding long-term health care excludes
those who cannot afford insurance or the costs of assisted living,
residential care, and in-home care? Rappaport points out there is
increasing evidence of the inability of entitlement programs such
as Medicare or Medicaid to cover the costs of long-term care for
those who cannot afford insurance. Is it reasonable that the current
political climate of managed health care in the United States creates
such a deep fear among people with disabilities who worry that life,
access, and opportunity are constantly being weighed on an economic
In Michael Berube's book he writes about his family's experience
of having a child born with Down Syndrome.
"Among the many things I fear coming to pass in my children's
lifetime,I fear this above all: that children like James will
eventually be seen as "luxuries" employers and insurance
companies cannot afford, or as "luxuries" the nation
or planet cannot afford. I do not want to see a world in which
human life is judged by the kind of cost-benefit analysis that
weeds out those least likely to attain self-sufficiency and to
provide adequate "returns" on social investments."
Sociologist Paul Higgins believes educational public policy for
targeted populations reinforces exclusion. Special education, Special
Olympics, and special buses, for example, separate people with a
diagnosis of impairment from those who do not yet have a diagnosis.
The challenge is to provide reasonable accommodation and an opportunity
to demonstrate skills, without excluding the population.
Public policy based on exclusion has been reflected in specific
laws throughout our history such as a 1911 City of Chicago Ordinance
known as "The Ugly Law," not repealed until the 1950s.
"It is hereby prohibited for any person who is diseased,
maimed, mutilated, or deformed in any way so as to be an unsightly
or disgusting object . . . to expose himself to public view."
policy of exclusion is supported in the media. As recently as 1987
Ann Landers wrote in her column, "In my opinion, restaurants
should have a special section for handicapped people - partially
hidden by palms or other greenery - so they are not seen by other
a summary, what would happen to our flying pig under the exclusion
model? The pig would never get as far as the plane because the person
with the disability must return to the institution, nursing home,
or prison, in their country of origin or, at the very least, hide
behind palms and greenery. The pig would be returned to the farm!
Policy based on Medical Cure:
third model of public policy is based on the search for a medical
cure. According to the medical model, disability is seen as a malfunction
in need of cure. The person is defined by the impairment. The implication
is that there is nothing else in life more important than the cure.
Cryogenics is at the extreme of this model, "Freeze me until
they find a cure!" In the face of technologies such as genetic
manipulation or cloning, that may cure, but will alter our identity
as human beings, who will we become? Is it worth waiting for such
a medical cure? If you do not believe there is anything that needs
to be cured or genetically prevented, then doesn't disability become
little more than a social construction?
seems more than reasonable for Christopher Reeve to search for a
medical cure to extend his life or relieve pain and discomfort.
However, persons with disabilities worry that the focus on impairment
devalues life with a disability. Reeve plays into the horror and
fear of severe disability in his efforts to be a symbol of potential
cure. This emotional appeal simply trumps the idea of disability
Many persons with disabilities believe Christopher Reeve is building
cruel false hopes. Most people cannot afford basic medical treatments
let alone expensive treatments with ten nurses round the clock and
the best medical specialists in the world.
it reasonable for Christopher Reeve to use his image to shift public
policy and resources away from disability civil rights in his search
for a cure?
If medical technology and genetic manipulation will not free me
of my disability in my lifetime, then am I considered a failure?
Will I be an object of pity? What is life worth without the cure?
Paul Longmore points out that the medical model provides for great
economic benefit to vendors of over-priced medical products and
treatments. In the search for a cure for dyslexia and language learning
disabilities, American families spend thousands of dollars on traveling
around the country experimenting with treatments such as inner ear
medications, cranial massage, bio-feedback or colored lenses. If
indeed our brains are organic and unique, if indeed dyslexic brains
have clusters of nerve cells slightly displaced in the cortex, is
it reasonable to embrace hopes of a cure in our lifetime?
most famous person who embraced the medical model is probably President
Franklin Delano Roosevelt, FDR, who carefully built his image as
the "survivor cripple." Although there are over thirty-five
thousand still photos of FDR at the Presidential Library there are
only two of him seated in his wheelchair. Was it reasonable for
FDR to make a deal with the press corps to keep the true nature
of his paraplegia hidden in order to appear to "overcome his
disability?" Paul Longmore believes such a deal could only
be struck in a society that views disability as a kind of transgression.
public, FDR presented the image of the medical cure by using the
aide of heavy metal braces and the support of walls, podiums, crutches,
or he pretended to walk for short distances by leaning on the arms
of two strong bodyguards and letting his legs swing. Most of the
major government buildings had massive ramps built over the steps
for FDR's motorcade to pull up level with the main entrance so that
FDR could appear to "walk" into the building. The day
after FDR died all the ramps were destroyed.
As a summary of policy based on the medical cure let's apply the
model to our
flying pig. The doctor would prompt extra medication for the patient
with the psychiatric disability in the hopes of curing her need
for a comfort animal so she could travel alone on the plane. Maybe
the doctor would prescribe a sedative to cure the pig's anxiety.
The pig would be returned to the farm!
Policy based on Rehabilitation:
the medical cure doesn't work then maybe our fourth model of public
policy, based on rehabilitation, will approximate normalization.
The goal of rehabilitation policy is independence and employment.
This policy approach was written into law in the 1973 Rehabilitation
Act, and a new industry was born. Along with it came Disabled Student
Programs and Services in higher education to support the training
necessary to transition to employment.
employment for persons with disabilities in the last century had
a sad history of freak shows, circuses, and fairground exhibits.
During World War II people with disabilities were suddenly employed
in record numbers, and in positions never before open to them, because
non-disabled persons were at war. After the war, unemployment rates
In "The Body Silent" Murphy comments on
the public's involvement in helping rehabilitation policy. We do
it from a safe distance by contributing to the March of Dimes, the
Muscular Dystrophy Society, or by dropping coins in the beggar's
cup. Murphy believes we can lull our consciences without getting
too close. The contradictory reaction of kindness and rejection
help make the rehabilitation of people with disabilities an arena
of enormous conflict of values.
The goal of policy based on rehabilitation has been
to secure employment
for persons with disabilities. However, social scientist Wolfensberger
has argued that America has generated a huge rehabilitation industry
in order to secure employment for professionals in the industry!
Traditionally the industry has been paternalistic,
with an emphasis on professionals taking responsibility for developing
service plans to present to their clients. However, in 1992 the
Rehabilitation Act was reauthorized to reflect a changing philosophy
in rehabilitation policy towards partnerships with counselors in
order to build self-advocacy, empowerment, and responsibility for
clients who are now labeled "consumers" or "customers."
In this new century, one of the biggest challenges
for rehabilitation policy is the impact of the growing number of
older Americans. Kadlec's research on those of us who are between
55 and 64, and are still working, shows that 95% of us plan to work
after retirement. In this older age group, one out of every two
seniors is dealing with impairments that limit functioning. Rehabilitation
policy will have to address this growing population of older consumers.
Another policy challenge is the eligibility
process for rehabilitation services. Recent court decisions involving
Boston University and the University of Mississippi have emphasized
how critical it is for institutions to establish publicized policy
that assures a process for persons to present documentation of limitations
to disability specialists in order to determine eligibility for
services and accommodations
Tanya Titchkosky's essays on social mapping of disability
challenge this traditional rehabilitation focus on documentation
of limitations, inability, negative progression and the need for
extensive therapy. Is it reasonable to prepare for employment and
life by focusing on inability and negation?
For example, defining blindness as "not seeing"
misses the truth that people who are legally blind do see. The question
is what do they see, how do they see, and how is that sight changing?
Is it reasonable for disability specialists to focus on limitations
or should they give primary focus to the identification and management
In her poem "Attention Deficit Disorder" Emma Morgan
has a postmodern approach to describing for her therapist what she
can do verses what she cannot do.
you speak to me of Russian borders rearranging,
Your hair do,
The glimmer of your nail polish,
The dream I had last night,
And the pattern on the wallpaper
At your back,
Vie for my attention
Like a class of eager children
Sliding off their seats
With the sheer potency of the right answers.
Your world of global puzzles
Loses me in a grand collage of universes,
Each the size of the pen cap
Held between your teeth.
But just give me your shoe,
Or one braided lace,
To you a detail -
To me a world of six strands,
Each a set of threads
The tension of the weave precise,
And I can see what isn't visible to you.
You couldn't stand to pay attention
In that small world
Snaking through the eyelet of your shoe.
our flying pig summary, policy based on rehabilitation would require
the passenger to present verification of the psychiatric disability
and maybe refer the person with the disability to a "fear of
flying" therapy group. If in the actual case US Airways had
applied a rigorous rehabilitation model, the airline would have
discovered that the passenger did not have a diagnosed disability
and was only transporting the pig to work as a comfort animal for
a client with a psychiatric disability at the final destination.
In this case the pig could fly - but would have to travel as cargo!
Policy based on Civil Rights:
the fifth model of public policy based on Civil Rights, people with
disabilities are viewed as having a legitimate grievance as members
of a minority group. The definition of disability shifts to the
sociopolitical realm. The quest is for equal access, equal opportunity,
and collective identity. Is it reasonable that disability was left
out of the 1964 Civil Rights Act and it wasn't until twenty-six
years later that the Americans with Disabilities Act was passed?
The disability rights movement had no Martin Luther King, no attention
from the press, and no easy way to build coalitions from the hundreds
of different disability groups. However, one in five people have
a diagnosed disability. They began to speak out. Rehabilitation
policy had moved people with disabilities out into society. The
resulting Independent Living Movement led the fight for disability
civil rights across the states.
The most surprising supporter of the 1990 Americans with Disabilities
Act was President George Bush, senior. Bush had a past record of
attempting to deregulate the guarantee of education for children
with disabilities and access for college students with disabilities.
A key player in influencing Bush in the fight for civil rights
was Evan Kemp, a Republican attorney. Kemp, a paraplegic who used
a wheelchair, convinced Bush by articulating a conservative argument,
"People with disabilities want to get out of the welfare system
and into jobs and do not need a paternalistic government to help
Bush finally put his pen to the passage of the Americans with Disabilities
Act with his declaration, "Let
the shameful wall of exclusion finally come tumbling down."
Bush then moved to the attorney, Evan Kemp, who was sitting in his
wheelchair on the podium, and Bush gave him a kiss on top of his
Visualize yourself as Evan Kemp, a successful attorney, a leader
in the party, sitting in your wheelchair on the podium, proud that
you've influenced major civil rights legislation. The President
walks over to you and doesn't give you a handshake or a touch on
the lower arm as he does with others, but does what a father might
do with a three-year-old child.
Joseph Shapiro writes, "It was an odd victory: as radical
as the ADA's passage would be for people with disabilities, Americans
still had little understanding that this group now demanded rights,
Bill Bolt in the magazine "New Mobility" argues that the
law was so weak it has done nothing to improve the status of persons
with disabilities. Today, two out of three persons with diagnosed
disabilities are unemployed and the Supreme Court is in the process
of gutting the ADA. Linda Krieger, a Berkeley law professor, believes
the ADA is based on a socio-cultural model of disability the judges
simply don't understand. The judges understand disability law as
eligibility for benefits or rehabilitation. The judges still look
at cases to see if the plaintiffs are sufficiently impaired to earn
protection under the ADA. The judges are still considering who is
"deserving." The judges are not considering the socio-cultural
issues of discrimination and equality of opportunity.
his book, "Success Without Victory: Lost Legal Battles and
the Long Road to Justice in America," Jules Lobel reminds us
that no civil rights movement succeeds overnight. The pentimento
of political protest and policy change, as in art, is often imperceptible
in the present but builds through history towards a desired outcome.
The ADA was not the end point of the disability rights movement
but a beginning.
Mary Johnson in her book "Make Them Go Away" points out
that one of the reasons the Bush administration was so willing to
support the ADA is that they truly believed few disabled people
would file lawsuits. They were proved wrong when the promise of
the Americans with Disabilities Act was brought to reality in an
array of Justice Department decisions. The one in five Americans
with disabilities began to assert their civil rights.
owners of the Empire State Building made its observation deck accessible
because they realized a mobility problem is caused by the presence
of steps verses an impairment of the hip, knee, or leg.
A drugstore chain changed its no pets policy to allow people who
use guide dogs in the store.
When John Hockenberry, journalist of "Dateline" fame,
showed up at a Broadway theater with his $60 ticket in hand, having
called in advance to ask if the theater was accessible, the theater
manager refused to allow him to transfer from his wheelchair to
his seat, complaining, "You are a fire hazard, sir." Hockenberry
filed his first bias suit and then proceeded to request an accessible
rest-room in the National Public Radio's offices where he had worked
Americans with Disabilities Act gave Casey Martin the right to use
a golf cart when he plays in Professional Golf Association tournaments.
The degenerative disorder of his right leg prevents him walking
long distances. Martin is a competitive golf player and the Supreme
Court argued that walking long distances is not a fundamental part
of the game.
Bartlett's ADA case demonstrated that civil rights access is not
limited to physical modifications. Bartlett, an accomplished professor
at the New York Institute of Technology, has dyslexia. She won her
case for extended time and the use of a computer on her New York
Disability civil rights became a theme in the media. In the film
"Philadelphia," Tom Hanks plays the employee who is fired
because he has AIDS. Denzel Washington plays his attorney who uses
the Americans with Disabilities Act to win the case against Hanks'
The Americans with Disabilities Act has shifted our thinking: from
"dependence" to "empowerment", and from "a
focus on the individual" to "a focus on society."
The success of policy based on civil rights has been to shift our
perceptions and challenge our stereotypes.
Lynn Manning, a poet and actor who uses a cane because he is blind,
challenges our stereotypes in his poem "The Magic Wand."
I whip out my folded cane
and change from black man to blind man with a flick of my wrist.
It is a profound metamorphosis -
From God-gifted wizard of roundball
dominating backboards across America
To God-gifted idiot savant
pounding out chart-busters on a cock-eyed whim;
From sociopathic gangbanger with death for eyes
to all seeing soul with saintly spirit;
From rape driven misogynist
to poor motherless child;
From welfare-rich pimp
to disability-rich gimp;
And from 'white man's burden'
to every man's burden.
It is always a profound metamorphosis.
Whether from cursed by man to cursed by God;
or from scripture-condemned to God-ordained,
My final form is never of my choosing;
I only wield the wand;
You are the magician.
A summary of the Civil Rights Model looks to the flying pig once
again. The passengers know they are guaranteed equality before the
law. The pig might assert his civil rights. "If the guide dog
can fly, I can fly!"
Policy based on Cultural Identity:
Folks with disabilities
are beset by challenge in the effort to consciously build a positive
cultural identity. This is the focus of the sixth model of public
policy. Other groups may proclaim "black is beautiful"
or "glad to be gay," but equivalent claims are challenging
for persons with disabilities. We search for a balance between our
effort to take pride in our organic differences and our refusal
to glorify or disrespect incapacity. Is it reasonable to assert
the value of our fragile organic lives through notions such as "disability
pride" or "celebration of difference?"
John Hockenberry, a journalist who uses a wheelchair,
discusses how his cultural identity differs from the dominant American
culture: "Americans expect things to work. It is one of the
consequences of being a superpower. Disabled people expect things
not to work whether they are American or not. In Israel and the
occupied territories I shared no language or religion with the people
I met. To my surprise, I discovered that we shared a world view
that had always isolated me in the United States."
among the disabled community over negative cultural stereotyping
has prompted policy change in the media in an effort to develop
positive cultural identity: advertising that embraces
organic differences in body images, theater companies such as the
National Theater of the Deaf, magazines such as "The Disability
Rag," and performance groups like "Wry Crips."
Much can be done to foster positive cultural identity
through educational policy. Simi Linton argues for the need to include
the cultural analysis of disability in our humanities and social
science curriculum in order to gain a broader understanding of the
significance of human variation. Cultural analysis of disability
deepens the historical comprehension of American values, beliefs
regarding human nature, gender, sexuality, American notions of individualism,
equality, and the social or
legal definition of what constitutes a minority group. Science and
medicine might turn their attention to the adaptive aspects of disability.
In literature or linguistics, disability as perspective should be
employed to flush out the hidden themes, images, or metaphors of
the field's guiding principles. In education the analysis of learning
styles, multiple intelligences, and perceptual processing abilities
places the issue of organic ambiguity in a respectful light and
fosters positive cultural identity for those of us with learning
discussion of cultural identity must include the debate over charity
advertising. Is it reasonable to present a stark, negative cultural
image of disability to secure public donations for the Muscular
Dystrophy Association? Is it reasonable for Jerry Lewis to infantilize
adults with disabilities referring to them as "Jerry's Kids?"
Many will argue that charity is itself oppressive, no matter what
image is employed.
Paul Longmore points out how stereotypes of cultural
identity are reinforced in the media, literature, film, or photography.
Longmore argues, "What we fear, we often stigmatize and shun."
Quasimodo ringing the bells but losing the girl reminds us that
hunchbacks do not have a sex life. Tiny Tim reminds us that little
boys who use crutches are a source of abject pity. The Beast attempting
to bewitch his Beauty reminds us that youth and purity guarantees
recognition as the fairest in all the land. The twisted face of
Scar plotting to destroy the Lion King reminds us of the inherent
evil in the deformed creatures of the world.
In an attempt to produce a new cultural identity, Kim Bretton Hetrick
challenges historic cultural stereotypes in this excerpt from her
poem "Brother Beast."
Let Quasimodo drop the bell rope,
And say to Esmerelda,
"I think you have the kindest eyes,
I'd like to buy you lunch,
And talk with you
About our hopes and dreams."
Perhaps they'd find some common ground,
And have a charming tryst.
||Let the little Cratchit boy
Lean his crutch against the wall,
And tell his uncle Ebenezer,
"I would like to go to M.I.T.,
be the top ranked of my class,
and learn to be an engineer,
and learn to be a man of means,
and keep my kindly father Bob,
and my dearest mum,
in finest style when they decide
to take their pensions and retire."
Let Beauty's beast decide
Just the way he is,
Canine teeth and claws, and all,
And if she wants to cherish him,
And share his comfy bed,
She'd better get accustomed
To his shedding every spring,
And buy him kibble for a shiny coat,
And beef bones for his teeth.
Let Scar forsake the cackling gang
Get a membership at Bally's,
Tone up his wasted limbs,
And meet some lioness,
Who thinks his scar is cute,
Grants him an air of mystery,
And takes long walks with her,
Across the sunny veldt of Africa.
A summary of the Cultural Identity Model takes us back to our flying
Under this model, educational policy would have required the airline
staff to receive training on the positive cultural identity of persons
with psychiatric disabilities and their use of comfort animals.
They would recognize the pig is not a farm animal and maybe treat
him with the respect due a trained comfort animal so that the pig
would not squeal with anxiety. If the passenger really had a psychiatric
disability, and the pig was appropriately trained, then the pig
would be allowed to do his job. The pig would fly!
Policy based on Universal Design:
The seventh model of public policy focuses
on the concept of universal design for the twenty-first century.
The world is very different than a hundred years ago. The number
of people who are functionally limited by impairment is increasing
at a dramatic rate. In every age group medical advances keep more
people alive, with impairments
One in five Americans has a diagnosed impairment. We're talking
about you, your family, and your friends.
We are in a new era because, today, technology can be the great
liberator in disabled people's quest for independence. People born
with organic limitations have access to fascinating technologies
and tools. Our politicians are realizing that these populations
are no longer an insignificant or silent minority. The business
community is realizing that people with disabilities are a huge
pool of consumers and we do not all use products in the same way.
The educational community is recognizing that each and every brain
has its own unique convolutions. We do not all learn the same way
and we do not demonstrate our knowledge and skills in the same way.
We have begun to recognize the universal value of many accommodations
that we thought were originally designed for people with impairments.
In the bar we put the TV on mute when it gets too noisy and follow
the action with the captions. At the airport we use the accessible
bathroom stall because it's big enough for our rolling bag and computer
bag. In our cars we listen to books on tape.
the universal design of a curb cut. Your cousin in her wheelchair
crosses the street with her husband walking by her side pushing
their baby in the stroller. Your grandfather with his cane avoids
the step and follows behind the young couple. Do we stop to think
that for every one wheelchair, ten to a hundred bicycles have rolled
across that curb cut?
example from the world of sports is from Gallaudet, a university
for students who are deaf. Their football team invented the huddle
in order to hide their sign language. The huddle is now accepted
as part of football everywhere.
At Santa Barbara City College for many years we have provided voice
recognition systems for your brother who has dysgraphia or your
neighbor who has orthopedic limitations, in order to dictate their
assignments instead of using a keyboard. Our Computer Applications
Department now teaches voice recognition as a universally designed
tool that benefits writers, doctors, deans, and presidents!
year this College submitted a proposal to the state for a universal
redesign of this Garvin Theater. The building was designed in the
early 1970s before any legislation to provide integrated access
and before architects embraced the key universal design question,
"Who am I excluding in this design?"
We have made improvements over the years such as side handrails,
assistive listening, automatic door openers, and a live captioning
system. However, we look forward to our new design which will consider
the theater lovers who need hand rails down the center aisles or
who use wheelchairs and who have a right to a choice of seat price,
a choice of sight lines, and the opportunity to sit with family
and friends. Some of you are hoping the redesign will consider the
need for more room between seats for that tall, tall student whose
legs go on forever!
Our College not only wishes to provide a universally designed environment
but also needs to take a reasonable approach under the current fiscal
constraints in California. Policy change is always to do with economics.
We cannot forget that our community's fiscal policies and priorities
do reflect our attitudes as citizens. We can celebrate the attitude
you demonstrated this month by voting for proposition 55 and moving
forward our plan for the Garvin Theatre redesign!
and politicians are beginning to realize that conscious policy decisions
based on universal design would reduce enormous costs to society
by allowing persons to function independently in a universally designed
world. Educators are realizing that the universal design of assessment
measures and teaching methodologies increases the opportunity for
more students to have successful outcomes. Universal design policies
might move a population of a few million people with disabilities
into employment and self-sufficiency or allow more seniors to stay
in their own home living independently.
Universal design combined with reasonable accommodation might free
us to focus on managing ability instead of focusing on limitation.
have to dream. It is our nature. Imagine a world where we have glamorous
commercials for virtual reality headsets to take you places that
you may not be able to visit physically; workplaces where employees
operate computers with eye movement; sleekly styled wheelchairs
that climb stairs; classrooms equipped with a variety of adjustable
ergonomic furniture; instructors who provide choice and variety
of opportunity in learning and demonstrating ability;
web sites that all have text and audio alternatives for graphics
and video; built in screen readers for persons to listen to text;
audio global positioning systems; radio frequency identification
technology that responds to our presence, desires, and needs; and
government sponsored technical aid centers where everyone would
go to see the latest hot items in universally designed technology.
The most challenging aspect of universal design is getting the
new devices to the people who need them the most. Few people can
afford the universally designed technology that Stephen Hawking
can afford or systems that are donated to him because he is famous.
Is it reasonable to design public policy to fund access to universally
designed products to assure the opportunity to function independently?
Nancy Scott, a poet who is blind, captures a sense of opportunity
and independence in her writing about universal design and the tools
that allow us to live our lives in our unique ways. This poem, "Hearing
the Sunrise" is dedicated to the light sensor on Nancy's kitchen
sun rises in B major
To sing one verse of "My Way."
Pitch to remind, tempo to awaken.
Twenty-three seconds of song,
bordered by silence,
serenade through any window I choose,
on any morning.
No long gazes.
No missed opportunities,
is more than enough time
when you hear the light.
a summary of the Universal Design Model we look again to our flying
pig. Universal design policy applied to the plane would mean more
legroom and therefore more space for the pig!
We have discussed the following seven models of public disability
- Medical Cure
- Civil Rights
- Cultural Identity
- Universal Design
Whatever aspects of the seven policy models you choose as reasonable,
can we change personal attitudes? With the most reasonable policy
in place Mel Brooks might still have exclaimed, "If God had
meant pigs to fly he would have given them - tickets!"
As you review the seven policy models, keep in mind their limitations.
You must consider the opinion of researchers such as Tom Shakespeare
who reminds us that the global experience of people with disabilities
is far too complex to be rendered within one unitary model. Consider
the range of impairments under the disability umbrella and the different
ways they impact on individuals over a lifetime. People do not fit
into two sharply distinct groups, with and without disabilities,
but reside at all points along a spectrum of capabilities. We all
have organic ambiguities.
Future lectures topics must look at the intersection of disability
with other axes of inequality such as gender, ethnicity, sexual
orientation, or nationality. Today, you begin your search for reasonable
public policy for our future.
Your Role in Setting Future Policy:
The challenge that remains is for you to choose your role in setting
future public policy. What can you do to influence policy change?
I have the beginnings of your to do list.
Listen to your political representatives. What are their opinions
on disability policy? Call or email your legislators with your opinion.
Influence by your vote. Tell the League of Women Voters not to put
the polling place up a flight of steps!
Engage with organizations of people with disabilities and disabled
people who are not members of organizations. Take a lesson from
your elders who have made the American Association of Retired Persons
a powerful force and encourage your friends and relatives with disabilities
to join the AAPD, American Association of People with Disabilities.
Spend your money at businesses and restaurants that are accessible
to people with disabilities. When the local supermarket installs
an automatic door, compliment the manager and assure her that you
- and your aunt who uses crutches - will be shopping there on a
At your work, remind your colleagues that not only text alternatives
and captioning for your web site are essential but also the multiple
choice options cannot be color coded - because you know your colleague
in the next office is colorblind.
Teach in your social life. When you're eating in a restaurant with
your nephew who is blind and wears dark glasses and the waiter says
to you, "What does he want to eat?" say, "I don't
know. Why don't you ask him?"
Email or write to producers with your critique of films that portray
people with disabilities such as, " Stuck on You," "Forrest
Gump," or "As Good as it Gets."
Deal with the pressure for body beautiful: include photos of your
friend who has facial dysplagia next to the photo of your even-featured,
clear-skinned friend, in a prominent place on your desk.
Central to a process that transforms social policy must be ongoing
empirical research. Engage in social research on the topic of disability.
Throughout your education, in all academic discourse, seek out
and request perspectives from people with disabilities.
you look to the future, I turn your attention to the perspective
of one of the most interesting role models of the age, David Blunkett,
the British Home Secretary. Blunkett is blind and has a lot to say
about reasonable public disability policy for our future. Many believe
that Blunkett wants to replace Tony Blair and become the first blind
A recent article by Oliver Letwin in Prospect quotes Blunkett,
"I count not being able to see
as an inconvenience rather than a disability . . .
The whole point, of course, is that we should all be judged by
what we do
and how effective we are, irrespective of any disability.
There is only one world we all inhabit
and, whether blind or not,
we all have to come to terms with that."
As Blunkett says in his book, Politics and Progress,
"A modern commitment to equality . . . must consider personal
responsibility - whether people have made free and informed choices
about what to do with their lives."
Blunkett believes it is reasonable to establish policy to distribute
society's resources to compensate people when inequality arises
through no fault of their own. He also believes that once society
has provided a basic level of social security then the individual
is in a position to take responsibility for making choices and that
the distribution of resources in our society should reward these
Blunkett believes his personal experience was transformed into
political commitment by the recognition that his opportunities in
life were not the result of chance, but the product of political
strategies by those who battled against inequalities in the past
and influenced changes in public policy for the future. Blunkett
says that he did not succeed because public policy did something
for him but because it gave him the opportunity to do things for
Blunkett leaves us with a challenging question. What about the needs
of people who are so organically fragile that they cannot take advantage
of the current opportunities in our age of challenging technological
advance? How do we develop policy for persons who cannot meet the
fundamental requirements of our complex, technological environment,
even with the most reasonable accommodations and the best of universal
What policies will provide opportunity for all persons to demonstrate
ability, whatever that ability may be?
Today you reviewed seven models of public policy, many of which
you no doubt found unreasonable. John Kennedy said, "Our task
is not to fix the blame for the past, but to fix the course for
As you leave this lecture decide on the most reasonable course
for future public policy regarding the disabilities you face yourself
or in your family. In what direction should our society move? In
what direction will you move?
Carroll addresses the question of future direction in his description
of Alice meeting the Cheshire cat.
"Would you tell me please, which way I ought to go from
"That depends a great deal on where you want to get to,"
said the Cat. "I don't much care where," said Alice.
"Then it doesn't matter which way you go," said the
"-so long as I get somewhere," added Alice as an explanation.
"Oh you're sure to do that," said the Cat, "if
you only walk long enough. In that direction, lives a Hatter:
and in that direction lives a March Hare. Visit either if you
like: they're both mad."
"But I don't want to go among mad people," Alice remarked.
"Oh you can't help that," said the Cat: "we're
all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have
As I bring the twenty-fifth annual lecture to a close, please indulge
me by promising to spend a few minutes reading your program, where
I have written my heartfelt thanks to all of you who have supported
my life's work and today's event.
Last but not least, in honor of the twenty-fifth anniversary of
the faculty lecture I thank my wonderful colleagues who trod this
path as faculty lecturer over the last 24 years. I particularly
treasure the memory of David Lawyer, our eighteenth faculty lecturer,
who died earlier this academic year. David and all the lecturers
here gave me such wise advice.
In honor of twenty-five years of this tradition I invite the previous
lecturers on stage for a group photograph. While we are gathering
on stage I end my lecture with photos of all twenty-five faculty
lecturers accompanied by Beethoven's Ninth Symphony, as a reminder
of Beethoven's theme of freedom, equality, and democracy - and as
a reminder that - when the time has come - when we can no longer
hear - we still have the ability to listen - and maybe we will discover
that pigs really do have wings!
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