Ed Roberts and the Independent Living Movement

Ed Roberts was a disability rights activist, known as the father of the Independent Living movement. That movement combines advocacy, resources and education toward the goal of living independently and fully integrated with abled society.

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Episode Transcript

Speaker 1 (00:01):
Welcome to steph you missed in history class from how
Stuffworks dot Com. Hello, and welcome to the podcast. I'm
Trac B. Wilson and I'm Holly cry 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

(00:24):
thought I 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

(00:44):
literally yesterday. 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 disability which combines
advocacy and resources and education all towards the goal of

(01:05):
living independently and fully integrated with abled society. And with
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

(01:26):
might want to skip ahead about thirty seconds, starting with
our mention of that eighteen month hospital stay. Edward Verne
Roberts was born on January 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

(01:48):
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 of its typicly
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

(02:10):
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, there
is a whole podcast on the history of polio and
its vaccines in our archive from past hosts Sarah and Bablina.
In many cases of polio, the diseases progression affects a

(02:32):
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, 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

(02:55):
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 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

(03:17):
inside of the iron lung and The iron lung works
by alternately lowering and raising pressure inside the chamber. 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,

(03:41):
speech is usually timed with the machine cycle of breathing. Today,
iron lungs have been almost completely replaced 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 and child hood very
long ago. But during Robert's early life they were the

(04:04):
standard of care and polio patients who couldn't breathe on
their own. In many patients, the muscle 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.

(04:28):
He was hospitalized for about eighteen months. 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,

(04:49):
no more than a vegetable. And 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
if 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

(05:11):
last nurse left, the medical 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 that had fewer stairs and could accommodate this
eight hundred pound iron lung, and from there he returned

(05:34):
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
school work, 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 he became

(05:55):
an excellent student. At this point, people with apparent disability
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
life in his room. They arranged for him to attend

(06:18):
some of his senior year classes, at least some of
them in person in a wheelchair. Roberts had learned a
method of breeding called Glossopher and Gail breathing, also known
as frog breathing, and this is sort of like swallowing air,
so basically using the muscles of his mouth and throat
to force air into his lungs. While he still needed

(06:38):
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
were really uncomfortable avoided looking at him, so he decided

(07:02):
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 become.
Throughout his life. The people who knew and worked with

(07:23):
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. Uh
through the wonderful work of oral historians and documentary filmmakers,

(07:48):
there is a lot of footage and oral history from
ed Roberts, and he is a character like he everyone
over and over remarks on just having a big, big
personality and being very gregarious and very funny. And so
we will link to a lot of those in our
show notes for the people who are interested and learning more,

(08:08):
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. 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

(08:31):
credits and physical education and driver's head 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, 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

(08:53):
a quote cheap 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 you didn't take PE and drivers that you need
a whole extra year of high school. Zona then took
the matter to the school board, which ultimately allowed Ed
physical rehabilitation to account for his PE credits, and they

(09:14):
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 attended his local community college, the College of San Mateo,

(09:34):
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
planned to transfer from the College of San Mateo to

(09:55):
u C l A. And that was a campus that
was already wheelchair accessible, in part because of a pro
graham for World War te 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, was going to UC Berkeley, and Ed knew

(10:16):
from his visits there that the campus was not particularly accessible,
But even though Berkeley's lack of accessibility made it a
less practical choice, that 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 made available to other disabled students. They gave him

(10:38):
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 for financial aid on
the grounds that he was not employable, And then when

(10:59):
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 in 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 uh and they backed his efforts to enroll

(11:20):
at you Ce 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 on campus to how someone who used an

(11:40):
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, and you see Berkeley
eventually relented. Robert's planned to work around you see Berkeley's
lack of wheelchair accessibility by using a wheelchair when he could,

(12:04):
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 U. C.
Berkeley's Cowl Hospital, and he moved in in nineteen sixty two.

(12:25):
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 Ron helped out as well, but at night
he was basically being treated as a patient and not

(12:47):
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 us, go have a drink, and even to go
on dates. It was that last one that prompted Roberts
to try to find a way to make a power wheelchair,

(13:08):
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, Roberts three hab 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,

(13:30):
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 fingers rather than pushing on them as
they were designed to be used. In nine Roberts was

(13:51):
no longer the only student living in Cowel Hospital. He
was joined by John Hessler, who had broken his neck
in a diving accident, and soon all Hospital was home
to other students with similar disabilities as well. By nineteen
sixty seven, 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

(14:14):
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 was a hotbed of political activism, including
protests for women's rights, free speech, and against the Vietnam War.

(14:36):
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 who weren't completing their coursework fast enough,
the Rolling Quads petitioned and then went to the media
on the grounds that the same standards were not being

(14:59):
a 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 typical student housing. When the city
started refurbishing a shopping center near the campus, eight of

(15:19):
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 slope that goes from the curb
level to the street level, which today is completely standard,

(15:40):
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 was well,
we don't need those, We never see any people out
in wheelchairs. And they were like, well, yeah, because it

(16:01):
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 back from
the College of San Mateo, Jean Worth had been working
on a college readiness program for minority students, and this

(16:22):
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 way and keeping
them from finishing school. Based on the work that the
Rolling Quads had been doing UH and how much they

(16:43):
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 he presented a grant
proposal to the Department of Health, Education, and Welfare to

(17:04):
implement a peer support program at UC Berkeley. The department
approved eighty one tho 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 provide attendance,

(17:24):
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, but the p

(17:46):
DSP was just not really willing to turn people away.
It was grounded in the self advocacy and the focus
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 often paternalistic, and it

(18:09):
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. Yeah, you will definitely see huge divisions,

(18:31):
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 I need to look

(18:53):
after you. Here's how I'm going to fix your problem
kind of voice. Soon the PDSPS 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. As more students with

(19:17):
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 went to Berkeley
or not. So almost immediately the p DSP staff of

(19:40):
nine full and part time counselors was just completely overwhelmed.
The result was that in nine two Roberts and the
Physically Disabled Students Program launched the Center for Independent Living.
It followed the same model as the p DSP, an
organization run by and for people with disabilities, in corporating

(20:00):
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 Center for Independent Living was funded by whatever money

(20:21):
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. As its director. He began more explicitly approaching

(20:44):
his disability rights advocacy in terms of civil rights. Other
centers for Independent Livings 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 his in his role at the Center

(21:05):
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 Berkeley, and Roberts would work as the

(21:29):
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 to accommodate in a workplace setting, and

(21:51):
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 Rehabilitations roster of duties,
as well as advocacy for non discrimination policies other things
that were basically meant to take a broader, more holistic
scope to what the department was doing. The department did

(22:13):
see a fair amount of turnover as employees resisted the
shift in direction, and in some cases we're 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
continue still today. And in the midst of all of

(22:34):
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 clause and the Rehabilitation Act of ninety three UH.

(22:56):
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

(23:16):
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

(23:39):
ultimately led to an enormous takeover of the Regional Health,
Education and Welfare Building in San Francisco in nineteen seventy seven,
one organized 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

(24:00):
of Health, Education, and Welfare to finally sign off on
the necessary regulations also in nineteen seventy seven. Section five
oh four would eventually lead into the Americans with Disabilities
Act in ninete. 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,

(24:20):
which itself involved advocating for accessible airports 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

(24:43):
from cardiac arrest on March fourteenth 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 any three at Roberts Day.
Also January is the day that he was a Google doodle. Coincidentally,

(25:08):
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 a Google doodle. Today.
The nonprofit ed Roberts Campus, a fully accessible campus and
events space in Berkeley, is also named for him. That

(25:32):
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 who is living with a disability,
especially if it is not something that is easily accommodated,

(25:58):
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 a huge, a huge deal,
So I think we definitely owe a lot to Ed Roberts.

(26:19):
Do you also have listener mail? It is from Francis.
Francis says dear Holly and Tracy. First of all, thank
you for all your wonderful podcasts. I am a Zimbabwean
living in Scotland, so I was chuffed to listen to
the one on Great Zimbabwe. Aside from it making me
a little homesick, here's some useless information you never knew

(26:41):
you didn't want to know. You talked about the Zimbabwe
bird both at the Great Zimbabwe site and on the flag.
The Zimbabwe bird is. It is believed supposed to be
either the African fish eagle or the battle or eagle.
Both of these raptors are wonderful and eagle, just as
a national bird should be. If you google the African

(27:04):
fish eagle you'll see it looks a lot like the
American bald eagle, although it is quite a bit smaller.
They are unsurprisingly related. The fish eagle is a much
loved burden Zimbabwe and no doubts elsewhere as well, and
its cry is very distinctive, a sound that is as
quintessentially African to me as the lions roar. And there's
a YouTube clip that I open in the shore notes.

(27:26):
To an outsider, it might sound a little distressing, as
I discovered once in Scotland when I programmed it as
a ringtone on my phone, but when you hear it
whilst sitting on the bank of the Zombiez River at sunset,
it fits just right and it's absolutely beautiful. The battle
or eagle is very colorful and distinctive bird, which maybe
why it was the inspiration for the Zimbabwe bird. They

(27:47):
also hunt snakes, which I personally am grateful for. Unfortunately
their numbers have dropped significantly thanks to hunting, poisoning and
the loss of habitat. When one is seen, it is
a treasured occurrence. The sort talk about when you get
back from your savannah adventures, even though they do not
sing quite as beautifully as the fish eagle. Thank you
again for all the podcasts, Francis, Thank you so much, Francis,

(28:11):
and Francis sent us a picture and that is a
beautiful bird. Yeah, and I will put a link to
the sound file of the call of This of the
Fish Eagle in our share notes as well, along with
like I said, the many Many's there's so much oral
history and documentary footage. A couple of different organizations have

(28:34):
done a great job of putting together whole libraries that
chronicle the history of the independent living movement. UH. We
will link to those things in the show notes for
people who are interested in learning more. UM. If you
would like to write to us about this or any
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dot com. We're also on Facebook at facebook dot com
slash miss in history and on Twitter at miss in History.

(28:57):
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If you would like to come to our parent company's website,
which is how stuff works dot com, you will find
all kinds of information about anything your heart desires. You
can also come to our website, which is missed in

(29:17):
History dot com, where we have a whole archive of
every episode that has ever been on the show. We
have lots of show notes from the episodes that Holly
and I have worked on, and some videos that we
more recently recorded after a trip to Massachusetts back in October.
You can do all that and a whole lot more
at how stuff works dot com or missed in history

(29:38):
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