It feels just incredible to be on the road again.
I've been pretty isolated for eight years since this car crunched. Me
too busy just trying to survive.
I went from being so brain damaged. I couldn't count change
to finishing a master's degree.
But this ain't exactly your inspirational cripple story.
Part of the fun of being brain damaged is
you're constantly having to argue. There is in fact something wrong.
People see the limb
but they don't see the loss of memory,
the judgment problems,
they're going to the bathroom 37 times a night.
The difficulty swallowing
the abandonment and isolation
here, I'm going to Chicago for this gathering of disabled people.
There are 43 million of us in this country,
but we're as invisible as Casper the ghost.
I'd only known a few of the disabled people of Minnesota.
So nothing prepared me for what I was about to walk into.
I work uh for the uh senior
second.
No, no, no, no.
You
in
your own.
Why? Why is
that
for your own?
Well, my safe is my choice.
Nhn
and home.
Married to arm
like everybody else.
I thought disabled folks were supposed to act tragic but brave
or else cute and inspirational.
Yes.
So,
yeah,
it's not.
But these folks weren't sticking to the script.
No,
the people watching
were shocked that these kids were so angry.
But that was how come I knew we were in the same club.
Chicago was the first time I knew I wasn't alone.
Yeah,
I stopped my scooter at a stop sign and the car behind me didn't
threw me 67 ft.
It's a good thing. I had a helmet in the trunk in case I needed it.
You bad
for you.
You feel what's happening here tonight, Billy,
it's for you. We love you, baby.
So I'm lying in the hospital unconscious
when I decide to have this big benefit for me.
It was a sellout.
We love you. We miss you get well soon.
I'd been on the radio with the rock and roll show that walks and kills.
I've been on the scene for years.
So the benefits jammed with 1500 people. All telling me I'm their best friend.
It's me.
Wake up will.
I feel like I'm the only person in Minneapolis who hasn't met you yet.
You think all I gotta do is wake up from the coma and everything's cool right
wrong.
When I came home from the hospital,
my body and spirit were broken.
I was brain damaged and I'd lost partial use of my left arm and leg.
The doctors were talking to mom about a nursing home for the rest of my life.
I went from gallons of people around me to nobody there in a couple of months.
The best job I could think of was selling pencils at the bus station.
Things did not look good for the home team.
I've had my fun
if I don't get.
So here you are, you have this accident
and you lose a lot of
motor function, friends,
income
belonging,
getting treated like a worthwhile competent human being
with an important contribution to
feeling kind of funny,
Lord. And I'm
going down slow.
You lose your ability to make money to survive by having fun.
You never get asked anywhere. You never get told anything.
You lose stuff. You can't even count and can't even name
the things that gave your life stability and meaning.
Want somebody please write my,
the
c
of the shape.
I,
I only knew one disabled guy whose Kodak at Paul,
a quadriplegic named Larry Keegan,
who I'd run into on the music scene
and you forgive me for all of my shame.
I didn't break my neck. Uh jump, jumped off a wall
into the ocean
and uh
landed on my head in 2 ft of water.
Uh broke my neck. C 56 lesion.
Now I'm laying there
doing a dead man's float, holding my breath,
my eyes are open
two little fish fly by and everything.
And I realized the rest of my life is gonna last as long as I can hold my breath,
I hear this breathing.
I don't feel, I don't feel anything.
I look back and it's this friend that I was diving with, with swear man
and turn me over.
He thought I was kidding.
Now,
before I take
it.
Ok.
Andrea.
She.
Oh
well.
Oh.
Oh my go.
So give me a deep breath.
You don't have to do that but
so fast for you guys
this morning that I,
uh,
out of breath,
keep making faces like you're in pain.
Oh, I'll do it.
You know what I mean?
Like that.
Are you in pain? No, not really
breathe it.
Miss what? Breath
it on this machine?
You do it all the time. You do it when you're not on the machine. You know,
you make,
I don't see it anymore because I've known you so long.
But keep making faces. Oh, yeah. Really? Like you're in pain.
You're not in pain only between my ears.
Oh, man.
Life as a quad
is a hard road to hold.
And Keegan's been there since he was a teenager. You
know, you're right.
He's tough. And I'm always amazed by him.
He types on the computer by biting on a tube in his mouth.
Years ago,
Louis started a resort for disabled vets that was
depicted and born on the fourth of July.
Now he's writing a book about his life
and type with one hand
and I think it's, it's hard, you know what I mean?
I
type one.
I
understand
Laurie's also a musician
and I guess he's kind of good at it since he's played friend act for some guys.
He knows like Bob Dylan Neil Young and Eric Clapton broke
down in Mexico
and
I'll burn it up inside.
No
place I can run to,
no place I can
broke
down in Mexico
and I can't get up and leave.
Find some peace of mind with every breath I breathe.
I hate to paint him as inspirational.
But I figured if Laurie could do what he wants with his life,
I could too.
Before the accident,
I'd made these radio documentaries that ended up on national public radio.
As I recovered,
I tried to put together support for a radio program about the brain damage.
I had experience
a waffle of awards. I had the injury.
I figured it would be a way to get working again.
It was a good idea.
But I think it needed a lot more sex and violence because nobody was buying.
I asked the do-gooder at the State Department
of Rehabilitation Services to help get me work
to give you all these tests to figure out what you wanna be.
Why the hell didn't they just ask me?
They never got me one job interview in eight years.
My brain damaged friend, Janie says as long as you don't have a job,
then they've got a job
after years of not helping. They tried to close my cases rehabilitated.
It took four levels of appeals to get them to provide.
Not a job, not even interviews, but more schooling.
I went back to the university to get my master's degree
with the brain damage and a memory banging on one cylinder.
It's like climbing Mount Everest with your fingernails.
Ok. One more time, one
more time, I
was studying things like Japanese to bring my brain back.
And vogue rehab wanted me to do something practical
or learn how to polish lenses for $4 an hour
first. Yeah,
Karima
send
desta,
they're civil servants and not known for their imagination or vision.
I figured if nothing else, a piece of paper might help me get work.
But with the experience
awards
a grad degree and a good grade point average, I still couldn't get a job.
Maybe I've got a bad attitude or something.
That's certainly what my father thinks.
Dad doesn't get.
How hard it is to convince someone to hire you when you've got a disability.
He figures some disabled people are just too gimped out to work
and the rest of us are lazy.
Do you know that 76% of disabled people are out of work?
Well, I wouldn't be surprised. So,
you, but you're suggesting that as if I would just get the right attitude.
You're not, you're not that disabled. You're thinking about wheelchairs again.
It's not a matter of degrees and it's not a matter of,
I mean, the disability is in my head. It's, I got hit in the head.
I had brain injury.
Well, you can't lean on that. You gotta go. I'm not leaning on it.
I'm talking to you about it. No, I'm not leaning on it. I
went back and got a master's degree. I'm not leaning on it.
It's a matter of determination. Uh,
you show determination to get your master's degree but,
and you,
you
fell in love with writing and I felt that you should be uh
trying to earn a living otherwise, but
I used the computer to help bring my mind back and got hooked on writing.
Professor Christopher Robinson and the best writer in America
for the world. I can't remember which.
So I started writing this journalism stuff about
how the helping systems deny you the basics.
You need to make it.
Like Barb Nolan had to fight vocational rehab through four levels of appeals
to get a chair that stands her up
so she can work and doesn't land in the hospital with pressure sores.
I got this chair
by appealing my case to vocational rehabilitation in Kansas.
Nearly all the way to district court.
I got $60,000 in services during my lifetime from bore.
And I figured out that by working for 25 years
and not being on social security raising my three kids,
I saved the government $2 million.
That's a pretty good trade off.
But I had to appeal and fight for almost two thirds of those services.
They were appropriate. They were reasonable. I should have had them.
I talk to people all the time. They're in the same boat.
They're being denied services that would enable them to be self sufficient,
enable them to get off this system.
Kay used to play in the Chicago Symphony
when she lost her sight and the money went,
she hit it better than anybody I ever met.
She lives in an apartment that her brother
owns with some furniture from the old days.
But I'm surprised she hasn't turned that piano
into kindling wood because she lives on social security
and I've seen her eat a margarine sandwich for dinner.
Medical assistance sends Kay the same 34 page form they send me
and I can't do it without help.
But if you don't dot Your I's and cross your Ts, they'll cancel your benefits.
I can't see it.
So why would they send all this stuff to a blind person and say you
get this back by July X or your benefits are cut and there's no prayer
that I could get it ever back in my whole lifetime.
Now, I don't know what these yellow sheets are since they're yellow.
They must be very important.
I have to have an affidavit stating that yes, I'm legally blind now. They
have known this for seven years, but I still have to verify every year
for every six months that I can't see now it's never going to get better.
My particular condition will never get better
and I cannot read a single word of print of any kind
of, any size.
And yet this is my task.
I think I stand a better chance of writing detective novels.
Nobody wants to hear about disability. I can guarantee you that
I've been sending out stories for years and I got a wall
full of rejections from some of the best magazines in America.
This is Joy Mincy.
What are you gonna, are you gonna film me getting in my car?
I was gonna say
that um
most of the time
it's Children who are interested in how I get.
They're always like, so how do you get your car? And it's really so.
Ok, so I'm doing this for the kids. All right.
Um
All right
ta
up,
I'm in the car. Ok?
And
now we proceed to load our wheelchair,
the cushion goes first
and in the seat
by some fluke,
my video teacher and I got a contract to make the documentary you're watching.
It's a one shot deal, but it's the first deal I've had in years.
So I'm starting to get out and meet some new people.
Joy's one of them. That's it
by
we see ourselves in the, I think in a, in a, in the context of, of our humanity,
of ourselves as beings, as thoughtful beings.
As emotional beings, as spiritual beings, as sexual beings,
um as uh people who are coming
together with thoughts and desires with relationships,
friendships,
you know, um employment
activism,
uh politics, you know, that's,
I think that's how we are beginning to see ourselves and explore ourselves.
Whereas the medical community, of course, only focuses on us as flesh,
focuses on us as
um
uh not joy mincy, the artist and activist,
uh but joy Mincy as the paraplegic, you know, who experiences, you know,
uh t 12 paralysis and in the sensation loss,
paraplegia is the result of an injury to the spinal cord
that break in the cord causes immediate and lasting
paralysis of motion and feeling in the lower body.
Most paraplegic patients will at various times suffer all of the following
symptoms. What they were essentially saying is that there is no
possible way
for a human
to feel positively about disability. That's, that's not an option.
It's not an option. Disability is inherently a bad thing.
It is inherently something that is just cause for suicidal thoughts.
I'm never gonna
cripple. People ain't supposed to do what they want with their lives.
They're supposed to be cheerful and grateful for crumbs like tiny Tim.
God bless us. Everyone
besides being pretty and smart, joy's doing what she wants.
And with this job making the documentary,
I felt like things were starting to happen for me too.
Maybe I could see some light at the end of the tunnel I'd been in for eight years
and then reality reared its ugly head.
It's called a spin down.
And it's a fancy word the system uses
when they think your life's getting too cushy and they want something back.
I got three notifications in the mail. One canceling my food stamps
and one asking for a 200
some dollars spend down
and the other one was something about $42 or something or other.
Ok. Ok.
And, and it's like um I've been trying for eight years since, since this accident
to get something going, you know what I mean?
And I finally get something going I got
$500 a month coming in. It's not very much money,
you know, and you guys are taking away two thirds of it,
you know, I mean it is this,
I mean it's like you, you hear about disincentives, it's like this is uh
it's like it's
like you guys are discouraging me from trying to
get something trying to get off the systems,
you know,
I mean, I don't understand what this is about.
Ok, well, I'll explain it to you as best I can um explain how your budget is figured,
please,
here's a copy of the notice that you received
uh saying that um your spend down is now $214 a month.
Now what I'm gonna show you now is how we arrive at that figure. Ok,
we start with your 522. That's your social security.
Then uh, we subtract $20. That's a disregarded deduction that we give everybody.
So that brings your income down to 502. Ok,
then we take your earned income which is $500. Ok.
Uh, we subtract $65 from that $500.
Uh, that's, again,
that's a deduction that we give everybody on their earned income.
Ok,
so that brings you down to 435 for your earned income, which is the number up here.
Then we divide that number by two because we only count half of it.
I,
I, we've got to stop this because I can handle a couple of numbers, but I can't handle
a whole list of this number from this number and then we do this direction,
then we divide this by two and I can't do it.
Tell me how, why is $522 a month? Too much money?
I mean, how can you live,
how can you live on $522 a month?
Um That's, that's a very good question
but,
you know, there's really, there's nothing that I can do
to change the numbers.
I understand Mr Jenkins. Could you live on $522 a month?
Uh Well,
I suppose, uh, I suppose I could, I think it would be extremely difficult.
I wouldn't want to,
I mean, it feels like it's kind of punishment.
Yeah, it's punishment for having had an accident, having a disability.
That's what it feels like.
Well, I understand how you feel about that.
Uh, I've got approximately 400 clients and basically, um,
they're all pretty much in the same boat because they're disabled
or
for,
for whatever reason. Yes,
it's not very much money. No, it's certainly not.
Ok.
So
I was explaining your spend down to you.
Ok. Take the 719
subtract. Uh,
the 420.
I don't know when it dawned on me,
but it can't be all my fault.
I mean,
you gotta be a lawyer and an accountant and
I don't know what else to make it through these
helping systems alive.
I got a master's degree with obstacles thrown in my way
and I'm smarter than the average bear.
But when I start to get somewhere his government systems, throw the lead weights on.
So what's the message you're giving me about
getting a job and getting off the system?
Millions of disabled people are trapped like me.
I thought the Americans with Disabilities Act was
supposed to fix all this crap online.
That sure was how the television was painting it.
The ad A is official recognition that prejudice exists
and it's supposed to allow us all kinds of access.
It sends a clear message to employers that just because we operate differently,
you can't deal us out of the game,
but it ain't like nobody gave us nothing.
I saw pictures of the gimps pushing pretty hard for this one.
And when our team scored, Bush called it a freeing of the slaves
but freedom don't always mean equal treatment.
Now for takeoff, please put your seat back upright and lock your tray table in place.
Also, you'll need to fasten your seatbelt low and tight across your lap.
Insert the metal fitting into the buckle
and tighten by pulling on the loose end of the strap.
I'd been hearing about Wade Blank and adapt for years.
Adapt, had organized that civil disobedience. I'd stumbled onto in Chicago
half a year before. If needed, an oxygen mask will appear automatically
when you see the mask, please extinguish your cigarette.
And so I decided it was time to visit the holy land of the crippled kids
in any way. I just wanted to touch the hem of Wade's robe.
The comparison is Denver who did civil disobedience
starting in 78 has all accessible buses
and Chicago who didn't do civil disobedience
now has 600
out of 3200 accessible,
which is less than 50%. So if you're in the mor
is what does the Bedi gives you what you want? Right.
And ahead of time,
get on the bus. It takes me
in Denver. It was a rush actually meeting Wade and hearing war stories about how
in 1978
the gang of 19 blocked city buses to get wheelchair lifts. Put on them
like Rosa Parks in Montgomery,
those 19 people just wanted to ride the bus like everybody else.
So they got out of their wheelchairs and laid in the street
and those buses couldn't move for a day and a half.
See, that's the first act of civil disobedience of his kind.
So the police didn't know what to do. They called the mayor. Mayor mcnichols said,
I don't want any disabled people arrested in the city of Denver.
That was his position.
So I said, all right, everybody we can rape pelage and plunder
a decade and a half later,
all of Denver's buses are accessible
to clean up.
So the city erected a plaque to the gang of 19
wade would clean the pigeon shit, another junk off it.
Nobody else is gonna do it for you.
Wait, you missed the spot up there.
All right.
Talk
in the fight for civil rights for disabled Americans.
These are the foot soldiers.
There's classical sound.
This is the headquarters of adapt,
the radical arm of the disability movement
adapt pioneered the fight for accessible public transit
and they won that puppy for good
with the signing of the Americans with Disabilities act.
Their new fight is trying to replace nursing homes with home attendant care.
Why are we in this stupid crazy fight?
We know it'd all be a lot easier
if we didn't have to run from one city to the other.
If we didn't have to fight with the airlines
about our right to be on their damn airplanes
if we didn't have to be out demonstrating in the hot blistering sun
and the driving rain,
if we didn't have to hold those damn vigils all night long
while the rest of our brothers and sisters were in jail.
If we didn't have to get arrested
and be in jail for several days, life would be so easy.
So why the hell do we go through all this?
We are in this fight because adapt has the dream of freedom
for all inmates of nursing homes.
The issue here is very clear what to do
with people who need help that can't help themselves.
And that's why they come here,
take a look at these pictures and we'll show you exactly
what they're doing here at the State of Illinois building.
They are blocking each and every stairwell, each and every escalator each and
so we
start business as usual here at the state of
I
gotta get out of here.
Doubt
me.
The
elevator,
talk
to the elevator people. They won't let us up.
We don't go up, you don't go up.
I just I got an appointment. I got an appointment. Hold on,
hold on,
sir. Total, babe.
Hey, wait a minute, wait a minute. You asshole. Is your appointment really working?
How can I make my appointment?
Channel Seven's Andy Shaw is standing by live
at the Illinois Center with late details.
Andy
Linda and Joel, they may be disabled but make no mistake about it.
This has been one of the best organized and most effective demonstrations,
watching videotape, the Chicago action.
I'd been at six months earlier, I could dig what the adaptive devices were up to
by blocking people's ability to move freely around
the state building for a couple of hours.
They were protesting policies that lock up disabled people
and take away their hope
so that nursing homeowners can make a profit.
The nursing home lobby is powerful
and they've seen to it that more than 80% of the Medicaid money
for long term care goes to nursing homes.
They protest cuts in the home care program
we've organized,
especially in the physical disability politics is really about money.
Don't you think
I learned from Bob Kafka
that adapt is fighting to get some portion of public
money redirected to home care attendant programs so that disabled people
on Medicaid
have the choice to stay home, which is actually way cheaper
instead of being forced to go to a nursing home when they need help
services.
On the national level, the American Health Care Association,
the nursing home industry bring brings in both public and private money.
$76 billion
you know,
about half of that,
somewhere in the neighborhood of $38 billion is, is public money, mostly Medicaid
money.
You're talking about an industry
that is big bucks paid for mostly,
you know,
with public dollars.
But it also devastates families who have the money, the ability to pay.
You know, the average nursing home cost is now almost up to 40 $45,000 a year.
Plus you're putting a person in the most degrading, you're taking a person,
whether young or old
out of a familiar surroundings, putting them in a warehouse.
Basically, even if the warehouse looks nice.
Basically, when you're told when to get up, when to eat, when to go to bed,
hey, adapt isn't making this up.
There's nearly 2 million folks in nursing homes in this country
and a big chunk of them are under 65.
Lee Swenson used to be a cop. I
always wanted to be a cop
but he got a LS Lou Gehrig's disease
and he couldn't even draw his gun.
You get disabled and you get caught in this Netherland
of rules that won't let you keep your own home
or much of your stuff if you want to qualify for Medicaid.
Thank you, Eddie.
Now, Lee lives in a nursing home.
Not too terrible as nursing homes go.
It's basically clean and tidy but no privacy or freedom of choice.
Lee's mind is sharp as attack
and he could live independently with the help of an attendant
for a lot less money than it cost to live in this nursing home.
Go
for
in general
must be
a rare
and
those of us
that is the brother
that put us
and bottles
don't function.
It doesn't mean
they are wrong.
The F
two
background.
So,
and
during PO
took
a bit
M
or
a
B,
I couldn't believe Robin Stefans could drive.
Do you think I'd miss a chance to cruise with her?
Robin? Is it hard for you to drive?
No, it's easy.
It's easy.
I learned in two days,
you learn in two days.
I
earn
about
eight years. Does
money.
I could drive.
I
can
leave.
I could drive.
No, I believe
I could drive
to be your,
find us, find this system
fine system,
find the system,
find the system.
This
I got
it. It's
all you.
It's all you to do you to drive.
But
actually
I, I knew how to drive.
I just
had to do it physically.
How about when you had to pass your,
you had to get a license test?
Tell me about getting a license test
first. I was a little scared.
I didn't have a chance.
Now. Uh,
yeah, it must have just freaked him out to see. You
want to take a driver's test.
It cracks me up, cracks me up.
You were scared. She,
and then so you had to go back a second time.
How'd you do then? I did great.
You did? Great.
Not as good.
This,
it turns out that Robin's only had one minor traffic ticket in nine years of driving,
which is a lot better than most of us can claim
Joel.
Great.
I remember Wade telling me how hard he had to work to steal
Robin away from her last job so she could work full time for ad
he wanted her because she's one tough cookie
talk about vision.
I mean,
here's a woman who had to fight
for eight years to convince some bureaucratic schmuck
to let her take a driver's test.
Wade looked at Robin and saw only her capacities and power
and charm.
So I got this flash
that the same thing that's throwing obstacles and Robins away and mine as well
is what's keeping Lise. Once in that nursing home,
the physical disabilities are not the problem.
The real barriers are the attitudes that see us as sick,
incapable, defective victims of a fate worse than death.
It'll be a stone oversimplification to say
that we get these attitudes from cereal boxes
or catch him from toilet seats
or from watching TV.
Dr Crusher believes my paralysis to be
f
I'm sorry,
I
want you to help me die.
There must be other options. No, there are not.
I will not live as an object of
pity or shame
my life as a klingon is over.
We are here live in Las Vegas. It's a kind of a chicken and egg thing.
Jerry
Lewis movies and TV, reflect the attitudes of the culture.
They also help create those attitudes. My kids cannot go in the workplace.
There's nothing they can do.
They've been attacked by a vicious killer.
I'm begging for their survival.
When you walk, we're always seen as helpless victims.
Keep your special inspirations.
Oh, we're shown his soul full of anger and self pity.
Needing a swift kick from the nearest non disabled person.
When I get stronger,
I'll quit drinking. If you keep drinking, you will not get any stronger.
Will you listen to me? I hired you and I want you to do it. I tell you
or else books and movies show us as villains,
dark creepy forces
and monsters.
Mr Bond.
It's good to see you again.
I suppose you can see playwright and actor, Neil Marcus as a monster
because he's hard to understand and his body is the same
packaging is everything.
Hey,
but Neil tells me his whole game is to change the way people look at disability.
Hi
and Yeah.
HC.
No way.
Hm.
The puzzle
in
the,
I think that is
and the power of our heart.
You're strange in the way people look at you.
Are you all right?
Did you just order?
Oh, no.
Could we try this again, please?
Hey,
a
rose
aye.
She is
burger.
You want a cheeseburger?
Yes.
He wants a cheese
burger.
You with disabilities of all kinds are told in one way or another.
You are defective as you are,
you are abnormal.
Um, you can never be fully human
until and unless you're cured or at least
corrected to the point
that you
arrive at some semblance
of normality, which is to say
you approach as close as possible
to being like
non
disabled people.
There's no positive way
within this view of things
to be a person with a disability
at Stanford University.
Paul LMO teaches a class called
the History of Human Differences.
He gets his students to consider that disability is not
so much sickness and a chance to get chicken soup
as it is a political fact.
See, the problem is when you are
um defined
exclusively
as an object of charity,
you're not in a position to demand anything as your right.
When you begin to assert yourself as having a right
to reasonable accommodations
that allow you to operate in the different way in which you operate
as a person with a disability,
then you initially at least will be
charged with seeking
special privileges
because you're not supposed to demand these things as a right.
These are things that we dispense to you out of our goodwill.
The idea that people with disabilities are a political minority and not sick
is right and brilliant and perfect.
When I started to understand that we're treated
and dissed just like any other minority.
Everything clicked.
A gold star for professor Paul
S
the day I visited his class, they were discussing J Stewart's novel,
the body's memory.
There's a great t-shirt
to come out of this book.
It's in the next to the last scene
in the story when Kate
goes down to the ocean
crawls out of the wheelchair and across the in and
swims rather awkwardly out
into the o offshore.
And the Greek fisherman
spots her.
This is the dial one.
He, he looks down at her.
Are you
drowning?
Kate smiled up at him.
No, I'm swimming. She said,
I think that would make a great t-shirt.
I told that to one of the disabled students and they said, well,
nobody knew what that meant.
And I said, yeah, but that's the point. They wouldn't know what it meant.
So they'd say what does that mean?
And you'd say,
well, you look at me
and you think I'm drowning.
But I know that this is the way I swim.
If you're disabled,
Berkeley is the place to be
disabled. People don't even get stared at here.
The Independent Living Movement was born here,
a chance to do it ourselves. And dodge the do-gooder
and the undisputed daddy of that movement is this cat named Ed Roberts.
Before going back to Minneapolis. I wanted to see Ed
because I figured if anyone knows about changing
attitudes and making things happen for himself,
it's special. Ed,
he's paralyzed from the neck down,
including the muscles around his lungs.
So he breathes on a respirator and sleeps in an iron lung.
He gets up late. So I knew he'd probably be in the box when I got there.
Mhm.
Welcome to my humble abode
when we talked about it on the phone. It scared me. And when I'm here with you
in the w it doesn't scare me at all.
It's funny because you're, uh, all of your head's up.
Right. And
this is the end, this is the end. Yes.
And people
think it's awful.
It's just a breathing like this.
It works very much like your diaphragm inside your
body.
It works by air pressure.
I affectionately, uh,
call it by womb with a view
because it's very comfortable being in here. It's warm.
It's, uh,
I don't have to hold the Respi hose
and just relax and breathe for me. Yeah.
And that's a real nice thing.
That's what this comes out. 6 ft.
Kind of a big room
in the sixties when Ed went to the State Department of rehab services
for help getting a job.
They called him infeasible.
I mean, here's a human vegetable that can't even breathe for himself.
Ok.
Ready?
14 years later,
Governor Jerry Brown appointed Special Ed, the director of that same state agency.
Oh, I feel so gentle and low.
It actually adds this into bondage.
These are just sex toys,
but there's hardly any difference between being tied up and being paralyzed. So
it's not very equitable.
Well, so if you have a partner that likes to be tied up, we're both in trouble.
No, but if he starts turning Blue
Ambulance,
what we have to do
is we have to change the old attitudes that have been there for many years
in order to change the old attitudes, we gotta get out in society.
We've got to be seen, we gotta be the neighbors, we gotta be the lovers,
we gotta be the, the friends we gotta be seen in a very natural way.
The disability is a part of life and some of us are gonna have it
and some of us are gonna have it young and some of us are gonna have it older,
but whatever it comes our job, you and I is to make sure
that we know
that we don't have to put somebody to institution.
We can't have high expectations of them in their future.
And if by helping them begin to take control of their own lives,
they can go back to work or go to work or, or do
dream, what they want to dream and make their dreams come true like we all do.
Oh, yes.
Nowadays,
along with folks like hail Zuki,
another co-founder of the Independent Living Movement.
Ed runs the World Institute on disability,
you
are
anything that destroys my balance, destroys my ability,
whether it's this a gun or whatever
right now. You should almost begin your sweep.
Tony Johnson encouraged Ed to do karate
to stick you
right about here is where you start because my leg's coming in fast.
Yeah. That's it.
That's it. That's perfect.
Don't wait too
long. Ok. That's good.
Ok.
All right. That's good. That's good.
Yeah, I think
about the t
people talk about,
some of us are very angry. Of course, we're angry. We've been through
the worst kind of atrocities, attitudes towards us to see us and
that you
see us, us as sick and unable, having no future.
I mean, that's gotta piss you off. And to me,
anger is one of the best things we got going in this movement
because when you're angry
it gives you a tremendous amount of energy.
Seeing special ed
in Berkeley.
Professor lawnmower's class made me come back to Minneapolis
wanting to do something to make a difference.
You figure anything's gonna start small. But like my dad says, you've got to try.
But this is for Billy Goff.
Billy Goff
is running for Park.
Billy Golf is running for park court at large.
He's a, uh, he's disabled. He was in an accident about seven years ago. And
uh this
crazy Eddie Fellini called me chicken
told me to put my money where my mouth is and run for Park Bo.
It seemed like a good idea at the time.
Second,
my name is Billy Golf
and I'm running for, um,
park Board at large.
And my mission is to tell you that I'm wonderful without actually saying it,
the beauty of our parks and lakes distinguish
Minneapolis from any other city in the country.
And I'm especially concerned about two groups that always get excluded,
elderly and disabled people.
I'm a disabled guy,
being disabled is as close as you can get to being invisible.
For example, right in this very room,
we have delegates who are wheelchair users.
If you look around, you might see a couple
and today there was a vote on the rules
by people having to stand. Now. That's dumb and insensitive.
I hate to see, I hate to see to say what people treated that way.
We're the largest minority in America. Wake up. It's time.
I'm 49 years old.
I'm brain damaged and hemiplegia.
I haven't had a job or any income to speak of in nearly a decade.
And they don't want me on their park board.
My dad's in his eighties and he wants to go fishing.
Dad.
What time are we gonna go?
Didn't act like you wanted to go at five o'clock.
You said five o'clock. You know what time it is right now?
That it's four hours later than you wanted to start.
Well, come on.
I want, I, I would do it if you were serious about going, if I was serious.
If I was serious, raise
me
JJ is very, very hard of hearing,
but he doesn't think he's disabled.
I know they know something about prejudice because he hides his age.
Mark Twain says better to be a young June bug than an old bird of paradise.
I wish dad could understand that. He's one of what he calls those disabled people.
Hm.
Not bad.
I went to her.
I
want to see some disabled people in a nursing home.
I want to see some disabled people in a nursing home
giving them in there. No disability,
their disability.
What do you mean? What are you gonna do for these people?
You gotta have enough money to take care of.
They don't have it. You don't have it. What do you do?
You'd have to leave them in a nursing home.
I
wouldn't make it any more than they do.
But if I don't have money
to go elsewhere, what am I going to do?
What is anybody going to do if the money isn't there to take them somewhere else?
What would happen to you if
like, um, three years from now you had a stroke or something and,
and something serious happened to you?
I would, what, what would happen to me?
I
mean, I'm asking about what would I want?
I'm asking about, uh, if it might be necessary to put you in a nursing home,
I don't want to go to a nursing home. And, uh, and I'm telling you that, uh,
if it looks like I, uh, it's terminal,
then I would want to jump off the bridge or do something to end it.
There's no point in living,
uh,
and suffering.
What makes you think they've been to see what is suffering?
How much do you think that being disabled has suffered?
Well,
for me, it would be.
Dad would rather jump off the bridge than be disabled.
And my brothers feel the same way.
Dad says
you could overcome your physical difficulties. If you had determination,
I would if I were in your place.
Now, let me get this straight.
They jump off the bridge, but I need a little determination.
Hm.
They think I'm not ok the way I am.
And if I'm still disabled,
it must be my own fault.
I didn't wear the lucky charm or
eat my wheaties or do whatever to make this embarrassing thing go away.
Maybe because I'm brain damaged and dad's getting on in years.
Neither of us remember to bring the gas line for the boat.
So we couldn't move.
Just like some people. I know.
But we had a really special day anyway.
I suppose that's the moral, if you think the story needs one.
Yeah.
Ok.