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
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