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Opening Music

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Joanne: People who are disabled aren't broken

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We're just challenged.

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We have different abilities.

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We're not all the same, and recognize

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that we are different...

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and recognize that we do have needs.

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Everyone has needs.

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My name is Joanne Daniels-Finegold 
and I live in

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Braintree Massachusetts. 
I grew up in Orange, New Jersey

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ah, having

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just a normal childhood -- with asthma

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and just going through school, doing well.

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

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Having a disabling condition made me 
more determined to just

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

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

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Being raised by a very strong 
mother, grandparents and dad

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there was no question as to

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

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Oddly enough one of the most basic 
challenges when you have

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

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don't listen. For example, there are

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

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

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

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

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get around. Having a person speak 
and another person listen

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

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One of the things

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hospital administrators need to do is 
talk the people who are

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

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

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

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General Hospital and a professor at 
Harvard Medical School.

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

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

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I started Harvard Medical School in 
September of

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1980, and was diagnosed

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probably in January of '81 with 
Multiple Sclerosis having

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had symptoms of it for years.

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

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

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And you would kind of mingle with the administrators

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and leading senior physicians at the local Harvard institutions

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

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

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to my right was the leader

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of a very large Harvard teaching hospital, 
and I decided

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

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

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

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

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hospital think about a person like that 
joining your program?

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

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

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worry about training a handicapped person. 
If that means

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

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

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disabled for over 25 years, and

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

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

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which is a central New Jersey suburb of

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New York. It was a sledding accident and my

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

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is that if you look at the record of changes

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supposedly on behalf of people with 
disabilities, everything that

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has been done, ostensibly for us, has been wildly

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

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automatic doors, ramps, curb cuts

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level sidewalks for example if we

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can figure out how to get them. 
Adjustable tables,

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would certainly be great for medical professionals

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

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medical professionals to listen to us and to

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start thinking about addressing the 
needs of the whole human

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population rather than some

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non-existent typical person, so

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

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

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

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go to a hospital in a wheelchair get

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onto a gurney and get x-rayed without

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

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ambulance trip back and forth to the 
hospital because the medical

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

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I view the health care system as

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one of the slower industries to kind of

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

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to care for our clients, our 
customers, our people

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

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cruise ships have had to do it. 
The Supreme Court

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

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

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

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

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of making sure that their facilities

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and their communications and every aspect

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of their policies, etc. are accessible. The only

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explanation that I can come up 
with is because

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the underlying mission of healthcare is beneficence

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

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

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we will move you. 
You should not have to move

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

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

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

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

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to that. Not only does that mean that

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the person with a disability who might 
have the capability of

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transferring if the table height is correct

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

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assistants are much greater risk 
of occupational injury.

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My name is Frances Deolatch. I've spent

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I would say most of my life in a hospital.

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For a couple reasons. One...

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It was hard for my family to

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care for me. I have two brothers and so

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as my parents had to care for them

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as well, and with me breaking bones

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all the time it was really

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hard to have to keep me home.

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One time I was going into the hospital

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and they put me in a room where

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I couldn't use the bathroom because 
the doorway was

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too narrow and I said to the nurse,

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you know if you put me in room

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with a bathroom that's more accessible

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I can take myself to the bathroom.

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

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

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

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

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use the bathroom myself. 
They really need to listen

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

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

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

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Doctors

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

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where disability has been 
historically stigmatized, and

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even though they are members of a caring

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

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heart, they may not fully 
appreciate the fact that

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

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doctors typically see people with 
disabilities when they are sick

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

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

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

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from the office, that the 
person is resuming their life

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

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

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I go to concerts. My favorite kind of

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groups are from Motown. And,

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my favorite group is the Temptations. (music)

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

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many times.

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That was really a thrill to me, and

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when I told a nurse once that 
I went to concerts

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she was like; You go out?

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Music: My Girl

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Music: My Girl

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Music: My Girl

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Stacy Berloff: I grew up in Framingham, Massachusetts

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They told me I had Juvenile 
Rheumatoid Arthritis, and

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at that point that's all that they knew.

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

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and I had had

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the RSD for several years before that, 
just undiagnosed

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probably since like 6 years old

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

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My biggest frustration is 
that people don't listen.

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It has taken me

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a very long time to get the physicians that

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

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cared for. I've search high and low

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to find doctors that have 
been appropriate for me.

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When you have a patient come 
to you and has been

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through a lot, listen to your 
patient. They often

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know better than what the textbook says.

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

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

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going through all my issues.

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

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

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and then eventually, years down

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the road they figure out what it is

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and I finally have had

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

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

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

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telling me that it's just impossible.

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People with disabilities are people, 
they are not just numbers

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

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people that they are going to have to

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deal with and they going 
to have to do things for

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

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and that we are going to be 
coming through their hospital

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doors, looking for care, equal care

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equal access to care, and that's what

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

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

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to people with disabilities.

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Jean McGuire: You know, one of the little known

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

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

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on more people that are 
getting older, and as

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

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

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live after Iraq, they live after serious ski

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accidents, they live after developmental

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

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

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

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moment. And, any family member of ours

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so figuring out how we make sure that

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accessible health care is there 
for all people, including

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

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important public health 
and public policy issue.

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

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So twenty years later we're 
still appreciating the

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

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there are many adjustments that hospitals

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

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

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

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

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

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

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about how disability 
and access for health care

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

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

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

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

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

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

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hospital is so unbelievably traumatic.

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People don't introduce themselves, it's very

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disorienting. People will not answer questions

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People are harsh and in a hurry,

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and people are incredibly disrespectful.

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I had a case where I had bleeding...

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from my testicles, and

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finally they had to have someone 
come down and cauterize it

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because it kept bleeding, and a nurse

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

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

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

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thing to him. You know,

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people value -- we value our dignity

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sometimes more than our health.

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Closing Music