Opening Music

Joanne: People who are disabled aren't broken

We're just challenged.

We have different abilities.

We're not all the same, and recognize

that we are different...

and recognize that we do have needs.

Everyone has needs.

My name is Joanne Daniels-Finegold 
and I live in

Braintree Massachusetts. 
I grew up in Orange, New Jersey

ah, having

just a normal childhood -- with asthma

and just going through school, doing well.

Graduating from Orange High School, 
and going on to UNH.

Having a disabling condition made me 
more determined to just

do things that needed to get done. 
It just made things harder

to do, but it didn't make things impossible to do.

Being raised by a very strong 
mother, grandparents and dad

there was no question as to

to keep on going. Not persevering 
was not an option.

Oddly enough one of the most basic 
challenges when you have

a disabling condition is dealing with 
other people. People who...

don't listen. For example, there are

more things that I can do that I can't do.

If I drop something, I expect to pick it up...

Just what my mother taught me; 
you drop it, pick it up. You dirty it...

you clean it. That doesn't stop 
because I use a wheelchair to

get around. Having a person speak 
and another person listen

doesn't cost money, it's not a cash outlay.

One of the things

hospital administrators need to do is 
talk the people who are

experts in disabilities. Those are people 
who are disabled themselves.

I am Lisa Iezzoni, I am a physician; 
I do not practice.

I'm the director of the Mongan Institute for 
Health Policy here at the Massachusetts

General Hospital and a professor at 
Harvard Medical School.

I would not at all describe my story as inspiring, 
I would describe myself

as a poster child for why we need 
the Americans with Disabilities Act.

I started Harvard Medical School in 
September of

1980, and was diagnosed

probably in January of '81 with 
Multiple Sclerosis having

had symptoms of it for years.

Probably in the Spring of 1983, and 
Harvard at that time

often hosted dinners for students where they would give you cheese cubes and sherry.

And you would kind of mingle with the administrators

and leading senior physicians at the local Harvard institutions

then you would all sit down to dinner afterwards, so that is what happened.

I had my cheese cubes and sherry and then 
sat down for dinner, and sitting

to my right was the leader

of a very large Harvard teaching hospital, 
and I decided

I was planning to do an internship 
in medicine, and so

I said to him look, here is my story; I might

be able to do a half time position, maybe 
share it with another student or

maybe do my residency for twice the 
amount of time, what would your

hospital think about a person like that 
joining your program?

He paused for a second, and he thought 
and then he said

There are too many doctors in the country 
right now for us to

worry about training a handicapped person. 
If that means

that someone gets left by the wayside, so be it.

John Kelly: I have a spinal cord injury at the C4 level, 
I've been

disabled for over 25 years, and

have used a power wheelchair that I drive 
with a sip-puff tube

since then. I was born and raised in 
Middletown, New Jersey

which is a central New Jersey suburb of

New York. It was a sledding accident and my

head hit a tree and my neck got broken. 
Well the first thing I would say

is that if you look at the record of changes

supposedly on behalf of people with 
disabilities, everything that

has been done, ostensibly for us, has been wildly

popular among the rest of the population. 
All you have to do is look at

automatic doors, ramps, curb cuts

level sidewalks for example if we

can figure out how to get them. 
Adjustable tables,

would certainly be great for medical professionals

of different height. And, I would ask...

medical professionals to listen to us and to

start thinking about addressing the 
needs of the whole human

population rather than some

non-existent typical person, so

hospital beds should go high 
enough for a 6 foot 4 nurse

to work with us. They should go 
low enough for a 5 foot nurse

to work with us so that they are not injured. 
We should be able to

go to a hospital in a wheelchair get

onto a gurney and get x-rayed without

feeling like the best way for us 
to do that is to take a $2000

ambulance trip back and forth to the 
hospital because the medical

professional can't handle our body, 
don't want to deal with it.

I view the health care system as

one of the slower industries to kind of

look themselves in the eye and say,
what do we need to do

to care for our clients, our 
customers, our people

who have disabilities? Movie theaters 
have had to do it,

cruise ships have had to do it. 
The Supreme Court

made sure of that, but it's been 
frankly really interesting

that the health care system hasn't. 
The health care system

I've tried to figure out why that is...

why I think the health care system 
has really not been at the forefront

of making sure that their facilities

and their communications and every aspect

of their policies, etc. are accessible. The only

explanation that I can come up 
with is because

the underlying mission of healthcare is beneficence

of doing good, doing humanistic, 
good work for people.

And there's an assumption that 
if you need to be moved,

we will move you. 
You should not have to move

yourself you disabled person. 
We are here to help you move.

So, the person with a disability, 
if they can't get up onto the table

because it doesn't automatically adjust to wheelchair height, the assumption is

that the practice assistants or nurses will do that. Of course there's a consequence

to that. Not only does that mean that

the person with a disability who might 
have the capability of

transferring if the table height is correct

can't do that independently, it also means 
that nurses and practice

assistants are much greater risk 
of occupational injury.

My name is Frances Deolatch. I've spent

I would say most of my life in a hospital.

For a couple reasons. One...

It was hard for my family to

care for me. I have two brothers and so

as my parents had to care for them

as well, and with me breaking bones

all the time it was really

hard to have to keep me home.

One time I was going into the hospital

and they put me in a room where

I couldn't use the bathroom because 
the doorway was

too narrow and I said to the nurse,

you know if you put me in room

with a bathroom that's more accessible

I can take myself to the bathroom.

That nurse's reaction was: Oh, that's okay 
we can just help you.

Don't worry about it, 
you can use a bed pan.

We'll take you to the bathroom. 
I said yeah, that's a simple solution

but I don't want it that way. 
I'd rather be in a room where I can

use the bathroom myself. 
They really need to listen

to their patients. They need 
to think to themselves...

Oh yeah, well she's 
had this disability, she

knows what's she's talking about. 
Let's take our cues from her.

Doctors

physicians and nurses are like other people. They've grown up in a society

where disability has been 
historically stigmatized, and

even though they are members of a caring

profession, very much so, and very much 
have that humanistic mission at

heart, they may not fully 
appreciate the fact that

people with disabilities have lives in the 
outside world. You know

doctors typically see people with 
disabilities when they are sick

therefore they're lying in their bed, they're inert, they're not moving, they don't look

like they are necessarily out there and active 
in their community and so people

tend to forget that when the go home from 
the hosptial or when they home

from the office, that the 
person is resuming their life

in the community as a parent, 
as a worker, as a partner

I go out quite a bit actually, I go to restaurants.

I go to concerts. My favorite kind of

groups are from Motown. And,

my favorite group is the Temptations. (music)

I would just like people to know that 
I've met the Temptations...

many times.

That was really a thrill to me, and

when I told a nurse once that 
I went to concerts

she was like; You go out?

Music: My Girl

Music: My Girl

Music: My Girl

Stacy Berloff: I grew up in Framingham, Massachusetts

They told me I had Juvenile 
Rheumatoid Arthritis, and

at that point that's all that they knew.

So I started with my first bout 
of CRPS at 8 years old

and I had had

the RSD for several years before that, 
just undiagnosed

probably since like 6 years old

and I was dealing with it without 
medication, but it was pretty bad

My biggest frustration is 
that people don't listen.

It has taken me

a very long time to get the physicians that

care for me in the way 
I feel like I need to be

cared for. I've search high and low

to find doctors that have 
been appropriate for me.

When you have a patient come 
to you and has been

through a lot, listen to your 
patient. They often

know better than what the textbook says.

They may not all the symptoms, 
but your patients know what they're

going through. And that's a 
big thing I've learned over and over

going through all my issues.

I've been told so many times that I'm

a psych case, because 
it doesn't fit the book

and then eventually, years down

the road they figure out what it is

and I finally have had

doctors say, well patients 
like you, you don't

fit the book, you write the book. 
But that doesn't help me at

time, when I'm going through 
the issues and they are

telling me that it's just impossible.

People with disabilities are people, 
they are not just numbers

They're not just statistics, they're not just

people that they are going to have to

deal with and they going 
to have to do things for

but we are actually people, and that we have feelings and that we have emotions

and that we are going to be 
coming through their hospital

doors, looking for care, equal care

equal access to care, and that's what

they say the give; equal care to all 
patients that come through

their doors, but they're not 
giving equal access to care

to people with disabilities.

Jean McGuire: You know, one of the little known

features of what's going on in our 
population right nows is the expanding

number of people living with disabilities. 
So we focus a lot

on more people that are 
getting older, and as

you age you more likely to have a disability, 
but the truth is more people

with disabilities are living longer. 
People live after car accidents, they

live after Iraq, they live after serious ski

accidents, they live after developmental

disorders that used to take them ealy in their lives. So the truth is the

prevalence of people living with disabilities 
is larger than it's ever been, and it's

going to continue to grow. So it's 
any one of us, at any particular

moment. And, any family member of ours

so figuring out how we make sure that

accessible health care is there 
for all people, including

those of us who either now are, 
or will become disabled is an incredibly

important public health 
and public policy issue.

The Americans with Disabilities Act, 
is still a work in progress.

So twenty years later we're 
still appreciating the

advances we've made and understanding 
where the challenges still are. And, so

there are many adjustments that hospitals

and other health care settings and other 
public buildings have made, in

that time. Wider doors, ramps 
in and out, handles

that people can operate. 
But, true compliance with the ADA

and true compliance with the vision of 
health care for all requires

more than that. And actually 
that's become a very vital

public policy debate. Throughout 
health care reform you see many indications

about how disability 
and access for health care

for people with disabilities is 
going to continue to be an important focus.

John Kelly: The situation is really urgent, because...

this happens to me and it happens to other people with severe disabilities

I'm in a crisis, I think I really 
should go to the hospital...

and I have this moment where 
I think, you know...

maybe dying would be a little bit better
after all. Because going to the

hospital is so unbelievably traumatic.

People don't introduce themselves, it's very

disorienting. People will not answer questions

People are harsh and in a hurry,

and people are incredibly disrespectful.

I had a case where I had bleeding...

from my testicles, and

finally they had to have someone 
come down and cauterize it

because it kept bleeding, and a nurse

said to the young intern, who had never introduced himself to me..

isn't that painful? And he said; Oh, it doesn't matter he can feel it anyway.

He didn't even know I was there. 
I was just a

thing to him. You know,

people value -- we value our dignity

sometimes more than our health.

Closing Music