SYMHC Classics: Ed Roberts and the Independent Living Movement

This early 2017 episode covers Ed Roberts, a disability rights activist known as the father of the Independent Living movement.

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Episode Transcript

Speaker 1 (00:02):
Happy Saturday. Today is the International Day of Persons with Disabilities,
which is an observance that the United Nations first established
in so today's episode draws from disability history. It's on
Ed Roberts and the Independent Living movement that is a
movement focused on collective self advocacy by and four disabled

(00:22):
people with a goal of getting people to support they
needed to live, work, and go to school within the
greater community rather than segregated away from it. Some of
the other subjects that are touched on in this episode
include polio and the five oh four sit Ends that
took place in nineteen seventy seven. Previous Hosts episode on

(00:43):
Polio was a Saturday classic recently in September, and the
five oh four sit Ends were part of an installment
of six Impossible episodes that came out on February of
This episode originally came out on January. Enjoy Welcome to

(01:03):
Stuff You Missed in History Class, a production of I
Heart Radio. Hello, and Welcome to the podcast. I'm Tracy B.
Wilson and I'm Holly Fry. Today's podcast is a listener
suggestion and I'm pretty sure it was a comment somebody
left us on our Facebook page. I really thought I

(01:25):
had written down the name of the person who sent
it in. Apparently I didn't, And I feel really bad
about that because it was such a great suggestion that
was definitely from that one specific person. It's not a
suggestion I think we've gotten other times. Besides that, by
absolute total coincidence. It was also a Google doodle literally yesterday.

(01:47):
In terms of when we are recording this podcast, uh,
it is about disability rights activist ed Roberts, who was
known as the father of the independent Living movement. That's
a movement for and by people with disabilities which combines
advocacy and resources and education all towards the goal of
living independently and fully integrated with abled society. And with

(02:11):
one quick heads up today there's a brief part of
today's episode while we are discussing roberts eighteen month hospitalization
with polio, that might be triggering for people with depression
or with eating disorders, and if that applies to you
when we get to that part of the story, you
might want to skip ahead about thirty seconds, starting with
our mention of that eighteen month hospital stay. Edward Verne

(02:36):
Roberts was born on January twenty, nineteen thirty nine, in
San Mateo, California, to Zona and Verne Roberts and at
the age of fourteen, he contracted polio, which is a
viral disease that primarily affects children under the age of five.
In addition to symptoms such as fever, headache, and vomiting,
polio also attacks the nervous system and causes paralysis. Because

(03:00):
of its typically young patients and the way the disease progresses,
it has also been known by the name infantile paralysis.
Polio still exists today. There's no cure for it, but
it can be prevented by a vaccine. The first polio
vaccines were introduced in nineteen fifty five, which was about
two years after Roberts contracted the disease, and if you're interested,

(03:21):
there is a whole podcast on the history of polio
and its vaccines in our archive from past hosts Sarah
and Babuina. In many cases of polio, the diseases progression
affects a person's ability to breathe. Until this stage of
the disease was usually fatal, but that year the first
version of the iron lung was introduced. The iron lung,

(03:44):
which is the more colloquial name for a tank respirator
or a negative pressure respirator, could keep patients alive during
this acute stage of the disease. An iron lung looks
like a big metal cylinder. It's big enough for a
person's whole body to fit into from the neck down. Typically,
there's a bed inside that can be slid in and

(04:04):
out of the cylinder, allowing the patient to be removed
and returned when necessary. Windows and portholes on the sides
of the cylinder let caregivers touch the person who's inside,
adjust their bedding, generally care for them while they are
still inside of the iron lung and The iron lung
works by alternately lowering and raising pressure inside the chamber.

(04:26):
When the pressure is lowered, air is drawn into the
lungs through the patient's nose and mouth, and when the
pressure is raised that air is pushed out, which both
forces the patient to exhale and allows them to speak
during the exhaled breath, so for a person using an
iron lung, speech is usually timed with the machine cycle
of breathing. Today, iron lungs have been almost completely replaced

(04:50):
by other respiration technologies. As of fourteen, there were only
about ten of them still in use in the world,
and those were mostly with people who had survived polio
in childhood very long ago. But during Robert's early life
they were the standard of care and polio patients who
couldn't breathe on their own. In many patients, the muscle

(05:12):
weakness and paralysis associated with polio were temporary, as was
the need for an iron lung, but in about one
and two hundred patients, the paralytic effects of polio are permanent.
This was the case for Ed Roberts. After contracting polio
in nineteen fifty three. He was hospitalized for about eighteen months.

(05:33):
While in the hospital, he was very ill, with a
very high fever and near total paralysis. His mother asked
his doctor whether he would live, and the doctor's answer,
which was given where Ed could hear him, was that
she should hope that he didn't because he would be,
in the doctor's words, no more than a vegetable. And

(05:53):
for a while Roberts decided he didn't want to live.
He was being continually looked after by nurses and the
only thing in his life that he had control over
was whether to eat and so he stopped. His weight
dropped to about fifty pounds, down from approximately a hundred
and twenty. But after the last nurse left, the medical

(06:15):
staff had basically decided that the end was near for him.
As he would describe later in his life, he decided
that he did want to live. He started eating again.
He was eventually able to return home. His family had
moved into a different house when it had fewer stairs
and could accommodate this eight hundred pound iron lung, and

(06:35):
from there he returned to school, calling into classes at
Burlingame High by phone. Prior to contracting polio, Roberts had
wanted to be a professional baseball player, and he hadn't
been particularly interested in schoolwork, but that changed after his illness.
He was about two years behind because of his lengthy
hospital stay, but he dedicated himself to his schoolwork and

(06:56):
he became an excellent student. At this point, people with
apparent disabilities weren't really seen all that often in American society.
Many were placed in institutions or were cared for at home,
but never really got out of the house. But as
Ed's senior year of high school approached, his mother and
his social worker insisted that he not spent his whole

(07:16):
life in his room. They arranged for him to attend
some of his senior year classes, at least some of
them in person in a wheelchair. Roberts had learned a
method of breathing called glossop angel breathing, also known as
frog breathing, and this is sort of like swallowing air,
so basically using the muscles of his mouth and throat

(07:36):
to force air into his lungs. While he still needed
the iron lung for much of the time, especially while
he was asleep, he was able to live outside of
it for periods of time. He was worried about being
stared at, and people did stare at him, but he
quickly realized that the people staring weren't the ones who
were really uncomfortable with with his being there. People who

(07:58):
were really uncomfortable avoided looking at him, so he decided
that the ones who were staring at him were the
people who were interested and curious. So he decided to
approach it as though they were staring at him because
he was a famous person and not because he was disabled.
And this approach to other people's reactions to him really
set the stage for the man that Edward Roberts would

(08:20):
become throughout his life. The people who knew and worked
with him remarked on how charismatic and ambitious he was,
a very funny, very determined person, an adventurous man who
loved good food and good drinks and good company and
was absolutely unafraid to demand accessibility and equality and to
do the things that people told him would be impossible.

(08:43):
Uh through the wonderful work of oral historians and documentary filmmakers,
there is a lot of footage and oral history from
ed Roberts, and he is a character like he Everyone
over and over marks on just having a big, big
personality and being very gregarious and very funny. And so

(09:05):
we will link to a lot of those in our
shore notes for the people who are interested and learning more,
but for now. One of Ed's first experiences with advocacy
would play out while he was actually still in high school,
and we will talk about it after a quick sponsor break.

(09:30):
Even though ed Roberts had good grades in high school,
when it was time for him to graduate, the school's
principle refused to let him. The state required credits and
physical education and driver's d. He had neither because neither
class was accessible to him. His mother's zona, who had
experienced in advocacy through her work as a labor organizer,

(09:50):
first took it up with the school. The vice principle
came by their house and suggested that since Ed hadn't
done the required coursework, his diploma would be a quote
CHIE one and he should stay an extra year to
make up for it. And the family, of course declined
this offer. It was not really reasonable to say, because
he didn't take PE and drivers that you need a
whole extra year of high school zone and then took

(10:13):
the matter to the school board, which ultimately allowed physical
rehabilitation to account for his PE credits, and they waived
the requirement for Driver's ED, which, uh, if you've ever
done any kind of of physical rehab it's harder than
most PE classes, Like he should have gotten extra credit
for that. Uh, so his high school diploma received. Roberts

(10:36):
attended his local community college, the College of San Mateo,
from nineteen fifty nine to nineteen sixty two, and he
at first planned to become a technical writer. He was
a good writer and he knew how to dictate documents,
so it seemed like a good way to be able
to earn a living, but after taking a class in government,
he became very interested in political science. Roberts had originally

(10:58):
planned to transfer from the College of San Mateo to
u c l A, and that was a campus that
was already wheelchair accessible, in part because of a program
for World War Two veterans that was already in place
at the school, but Ed's advisor at College of San Mateo,
Dean Worth, recommended the University of California at Berkeley for
the strength of its political science program. Ed's brother Ron,

(11:20):
was going to UC Berkeley, and Ed knew from his
visits there that the campus was not particularly accessible, but
even though Berkeley's lack of accessibility made it a list
practical choice, it was definitely the stronger option for him
in terms of academics. Ed went to the California Department
of Rehabilitation for financial help with school, something it had

(11:40):
made available to other disabled students. They gave him a
personality test and later told him that it scored him
as being very aggressive, something that Roberts suggested, given his disability,
should be seen as a positive and not a negative,
but the counselor assigned to him at the Department of
Rehabilitation denied his request or financial aid on the grounds

(12:02):
that he was not employable, and then when you See
Berkeley learned about his disability, it tried to resend his
acceptance to the university. But similarly to how he'd had
his mother's support and getting his high school to allow
him to graduate, here, he had the support of the
staff at the College of San Mateo, including gene Worth,
as well as the school's president and Dean of students

(12:24):
uh and they backed his efforts to enroll at you
See Berkeley. They pointed to his strong academic record as
evidence that he had the right to continue his education
at the school with the best academic program that he
wanted to study, and that he shouldn't be forced to
go elsewhere just to be on a campus that was
already accessible. You See Berkeley, arguing that there was nowhere

(12:44):
on campus to how someone who used an iron lung,
and worried about Robert's medical needs and the risk that
something could happen to him while he was at the school,
again said no. This time, Roberts and his advocates went
to the newspaper You See Berkeley eventually relented Robert's plan

(13:04):
to work around you See Berkeley's lack of wheelchair accessibility
by using a wheelchair when he could, but being carried
into places like classroom buildings or cafeterias that had stairs.
But there was still the real issue of having nowhere
in student housing that could accommodate an eight hundred pound
iron lung, and eventually the decision was made to house
him in a wing of you See Berkeley's Cowl Hospital,

(13:27):
and he moved in in nineteen sixty two. For that
first year, it was a really lonely existence. Roberts was
the only student being housed full time in the hospital,
and his primary company was an attendant that was paid
for by state funds from a program to provide services
for people with disabilities. Sometimes his friends or his brother

(13:49):
Ron helped out as well, but at night he was
basically being treated as a patient and not a student.
At the same time, though in typical college fashion, he
had a lot more freedom and independence than he had
had at home. He could breathe on his own outside
of the iron lung long enough to go to class,
go have a drink, and even to go on dates.

(14:09):
It was that last one that prompted Roberts to try
to find a way to make a power wheelchair, which
was at this point a relatively new technology work for him.
Today there are a lot more options for controlling power wheelchairs,
including head and mouth controls, but at the time, hand
controls were really the only one in existence. For this reason,

(14:30):
Roberts threehab counselors had told him that he wouldn't ever
be able to use one. He only had the use
of two fingers on his left hand, and not in
a way that could operate those controls. But Roberts, highly
motivated by a desire to be alone with his girlfriend,
figured out that with the controls simply turned around, he
could operate the power wheelchair by pulling with his two

(14:51):
fingers rather than pushing on them as they were designed
to be used. In nine Roberts was no longer the
only student living in Cowell hospit Battle. He was joined
by John Hessler, who had broken his neck in a
diving accident, and soon Cowel Hospital was home to other
students with similar disabilities as well. By nineteen sixty seven,

(15:12):
at which point Roberts had finished a bachelor's and the Masters,
and had moved on to PhD work in political science.
There were about twelve students living in Cowel Hospital who
called themselves the Rolling Quads. They formed a support network
and advocacy group, coming up with ideas and strategies for
better accessibility both on and off campus. You see, Berkeley

(15:34):
was a hotbed of political activism, including protests for women's rights,
free speech, and against the Vietnam War. Berkeley is one
of the campuses that shows up again and again in
coverage about student protests, some of them uh quite radical,
and this was true for the Rolling Quads as well.
When the program administrators tried to cut funding for students

(15:57):
who weren't completing their coursework fast and the Rolling Quads
petitioned and then went to the media on the grounds
that the same standards were not being applied to non
disabled students. Basically, the school was in a hurry for
the students with disabilities to finish faster because it was
more expensive to house them, but that same measurement was
not being applied to other students who were in more

(16:19):
typical student housing. When the city started refurbishing a shopping
center near the campus, eight of the Rolling Quads went
to a city council meeting to demand that curb cuts
be included in the budget. They were with the city
devoting fifty thousand dollars a year to making accessibility improvements
to city streets. The curb cut is just that little

(16:40):
slope that goes from the curb level to the street level,
which today is completely standard, was not standard at that point,
and it meant that, you know, if if you were
using a wheelchair, it was really hard for you to
get from like across the street. And when they went
to the city council, one of the arguments that they
got back, well, we don't need those, We never see

(17:01):
any people out in wheelchairs. And they were like, well, yeah,
because it is because safe, we can't use the sidewalks.
It's such like a jacked up logic. I know. Uh.
As all of this was going on, Robert's former counselor,

(17:22):
back from the College of San Mateo, Jean Worth, had
been working on a college readiness program for minority students.
And this was a program that was working toward reducing
high school dropout rates and preparing minority students for college.
Through peer counseling, students who were at risk for dropping
out were paired with other students who were their mentors
who could help them remove whatever obstacles were in the

(17:43):
way and keeping them from finishing school. Based on the
work that the Rolling Quads had been doing UH and
how much they had been able to advocate for themselves
and support one another, Roberts thought the same model could
be used for students with disabilities. So Roberts flew to
Washington to help Worth write a plan that included disability
among the minority students the program sought to help, and

(18:06):
he presented a grant proposal to the Department of Health, Education,
and Welfare to implement a peer support program at UC Berkeley.
The department approved eighty one thousand dollars in funding. With
this grant, Roberts and the Rolling Quads started the Physically
Disabled Students Program or PDSP. The p DSP was run
by and for students with disabilities, and it sought to

(18:29):
provide attendance, wheelchair repair, and resources for accessible housing, including
the relocation out of Cowell Hospital into actual accessible housing
rather than a hospital ward. Even though it was only
meant to be a student program, it was so successful
that people in the greater community began to rely on
it really quickly. Something that was technically against the rules,

(18:52):
but the p DSP was just not really willing to
turn people away. It was grounded in the self advocacy
and the folk us on self determination that became the
hallmarks of the independent living movement. Much of the disability
advocacy before this point had been by and on behalf
of caregivers, not of people with disabilities themselves. It was

(19:14):
often paternalistic, and it approached people with disabilities as a
population to be pitied and looked after, not as autonomous
human beings capable of making their own decisions. Although there
are still divisions between self advocacy and caregiver advocacy today,
the independent living movement changed that direction entirely. You will

(19:35):
definitely see huge divisions especially among like uh parents of
children with disabilities and then those adults who have grown
up and are able to advocate for themselves. A lot
of times very different needs and opinions. But before this
movement really started, the only voice was the more paternalistic

(19:58):
I need to look after you. Here's how I'm going
to fix your problem kind of voice. Soon, the p
DSPs work made a more official move off of campus,
rather than just seeing to the needs of community of
the community, even though it was really a student program,
and we will talk about that after another quick sponsor break.

(20:27):
As more students with more types of disabilities came to
Berkeley's Physically Disabled Students Program for help, the p DSP
broadened its focus from primarily wheelchair users to include, for example,
providing rail readers for blind students. And as we noted
before the break, the p DSP didn't want to turn
away anyone who needed help, regardless of whether they actually

(20:47):
went to Berkeley or not, so almost immediately the p
DSP staff of nine full and part time counselors was
just completely overwhelmed. The result was that in Robert and
the Physically Disabled Students Program launched the Center for Independent Living.
It followed the same model as the PDSP, an organization

(21:08):
run by and for people with disabilities, incorporating a broad
range of disabilities and working towards the goal of completely
integrating people with disabilities into the greater community. The by
laws stipulated that at least fifty one of the staff
and board had to be people with disabilities. While the
p DSP had been launched by federal grant money, the

(21:29):
Center for Independent Living was funded by whatever money its
founders could scrape together, including donations, occasional grant money, and
ten percent of the pot at some of the founders
periodic poker games. And after a brief time away from
Berkeley teaching community organizing at an all black school, Roberts
returned to the Center for Independent Living in nineteen seventy four.

(21:51):
As its director, he began more explicitly approaching his disability
rights advocacy in terms of civil rights. Other centers for
Independent Living soon opened in other states, following the same
model for self advocacy, self determination, integration, and quality of life.
By the nineteen eighties, there were more than three hundred
of these centers around the United States. Roberts stayed and

(22:15):
his in his role at the Center for Independent Living
for about eighteen months until nineteen seventy five, when California
Governor Jerry Brown came for a tour. After seeing the
work that Roberts was doing, he offered him a new position,
director of the state's Department of Rehabilitation. This was the
same department that had told Roberts he was unemployable when
he was looking for financial help to go to UC

(22:37):
Berkeley and Roberts would work as the director of the
state Department of Rehabilitation for the next nine years. During
that time, he would radically shift the department's direction and
the way that it offered services. The department's federal funding
was based on how many people it was able to
place into jobs, so for years it had focused most
of its attention on the people whose disabilities were easiest

(23:00):
to accommodate in a workplace setting, and that was why
it had written Roberts off as unemployable. Instead, Roberts added
day to day support for a person's independent quality of
life to the Department of Rehabilitation's roster of duties, as
well as advocacy for non discrimination policies other things that
were basically meant to take a broader, more holistic scope

(23:22):
to what the department was doing. The department did see
a fair amount of turnover as employees resisted the shift
in direction and in some cases were let go because
they did not agree with the shift in direction, and
the debate on how much to continue to focus on
more easy to place jobs for the sake of federal
funding continued, and really in a lot of places continued

(23:43):
still today and in the midst of all of this UH,
in those same years, Robert got married and he and
his wife Catherine also had a son named Lee. Also
during these same year's very busy collection of years was
a lengthy governmental back and forth related to what's known
as Section five oh four. This is a non discrimination

(24:03):
clause and the Rehabilitation Act of nineteen seventy three UH.
Section five oh four reads quote, no otherwise qualified handicapped
individual in the United States shall, solely on the basis
of his handicap, be excluded from the participation, being denied
the benefits of, or be subjected to discrimination under any
program or activity receiving federal financial assistance. Section five oh

(24:28):
four was added to the Rehabilitation Act almost unnoticed during
the Nixon administration, and the fight over it lasted into
the administration of Jimmy Carter, largely due to the financial
costs involved with making buildings and programs accessible and fears
about its scope being too broad. A four year delay
in writing regulations to actually implement section five oh four

(24:51):
ultimately led to an enormous takeover of the Regional Health,
Education and Welfare Building in San Francisco in nineteen seventy seven,
one or and ized by Judy Hyman, who had been
paralyzed after contracting polio as a baby. Roberts made several
visits to this sit in, which was ultimately successful, prompting
Carter's Secretary of Health, Education, and Welfare to finally sign

(25:13):
off on the necessary regulations also in nineteen seventy seven.
Section five oh four would eventually lead into the Americans
with Disabilities Act in nine ed Roberts continued to be
a strident advocate for disability rights and independent living for
the rest of his life, and this included travel all
over the world, which itself involved advocating for accessible airports

(25:35):
and airplanes. He helped found the World Institute on Disability
in nineteen eighty three, and he was awarded a MacArthur
Foundation grant in nineteen eighty four. He served on the
board of directors of numerous disability rights organizations while also
serving as the president of the World Institute of Disability
until until his death from cardiac arrest on March fourteenth

(25:57):
of nineteen five at the age of fifty six. His
wheelchair is now part of the Smithsonian Collection. He was
inducted into the California Hall of Fame in eleven and
the United States House of Representatives declared at January at
Roberts to day. Also January is the day that he

(26:17):
was a Google doodle. Coincidentally, as I was like, that
was the day I finished writing this podcast. Good accidental timing,
Tracy Well, and as I was doing the research, I
was like, oh, his birthday's coming up, and then there
was the Google doodle today. The nonprofit Ed Roberts Campus,
a fully accessible campus and events based in Berkeley, is

(26:39):
also named for him. That is had Roberts. He really
did so much to shift the way that people thought
about disability and to shift the way that people regarded
people with disabilities. Uh, not at all to suggest that
everything is perfect now. I mean basically, everybody I know

(27:00):
who is living with a disability, especially if it is
not something that is easily accommodated, faces a basically continual
uphill battle to get services and basic uh equipment and care.
But going from nothing two to that, like it was

(27:25):
a huge, a huge deal. So I think we definitely
owe a lot to Ed Roberts. Heany so much for
joining us on this Saturday. Since this episode is out
of the archive. If you heard an email address or
a Facebook U r L or something similar over the
course of the show that could be obsolete now. Our

(27:47):
current email address is History podcast at i heart radio
dot com. Our old health stuff works email address no
longer works, and you can find us all over social
media at missed in History. And you can subscribe to
our show on Apple podcasts, Google podcasts, the I heart
Radio app, and wherever else you listen to podcasts. Stuff

(28:11):
you Missed in History Class is a production of I
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