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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
