[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:01.00,0:00:05.73,Default,,0000,0000,0000,,Opening Music
Dialogue: 0,0:00:12.11,0:00:16.12,Default,,0000,0000,0000,,Joanne: People who are disabled aren't broken
Dialogue: 0,0:00:16.57,0:00:21.16,Default,,0000,0000,0000,,We're just challenged.
Dialogue: 0,0:00:21.44,0:00:24.75,Default,,0000,0000,0000,,We have different abilities.
Dialogue: 0,0:00:24.75,0:00:27.93,Default,,0000,0000,0000,,We're not all the same, and recognize
Dialogue: 0,0:00:27.93,0:00:32.14,Default,,0000,0000,0000,,that we are different...
Dialogue: 0,0:00:32.14,0:00:36.55,Default,,0000,0000,0000,,and recognize that we do have needs.
Dialogue: 0,0:00:36.55,0:00:38.50,Default,,0000,0000,0000,,Everyone has needs.
Dialogue: 0,0:01:02.72,0:01:04.85,Default,,0000,0000,0000,,My name is Joanne Daniels-Finegold \Nand I live in
Dialogue: 0,0:01:04.85,0:01:08.90,Default,,0000,0000,0000,,Braintree Massachusetts. \NI grew up in Orange, New Jersey
Dialogue: 0,0:01:08.90,0:01:11.50,Default,,0000,0000,0000,,ah, having
Dialogue: 0,0:01:11.50,0:01:17.57,Default,,0000,0000,0000,,just a normal childhood -- with asthma
Dialogue: 0,0:01:17.57,0:01:21.52,Default,,0000,0000,0000,,and just going through school, doing well.
Dialogue: 0,0:01:21.52,0:01:25.91,Default,,0000,0000,0000,,Graduating from Orange High School, \Nand going on to UNH.
Dialogue: 0,0:01:25.91,0:01:30.33,Default,,0000,0000,0000,,Having a disabling condition made me \Nmore determined to just
Dialogue: 0,0:01:30.33,0:01:32.80,Default,,0000,0000,0000,,do things that needed to get done. \NIt just made things harder
Dialogue: 0,0:01:32.80,0:01:36.94,Default,,0000,0000,0000,,to do, but it didn't make things impossible to do.
Dialogue: 0,0:01:36.94,0:01:42.30,Default,,0000,0000,0000,,Being raised by a very strong \Nmother, grandparents and dad
Dialogue: 0,0:01:42.30,0:01:46.88,Default,,0000,0000,0000,,there was no question as to
Dialogue: 0,0:01:46.88,0:01:52.60,Default,,0000,0000,0000,,to keep on going. Not persevering \Nwas not an option.
Dialogue: 0,0:01:52.61,0:01:57.62,Default,,0000,0000,0000,,Oddly enough one of the most basic \Nchallenges when you have
Dialogue: 0,0:01:57.64,0:02:01.44,Default,,0000,0000,0000,,a disabling condition is dealing with \Nother people. People who...
Dialogue: 0,0:02:01.44,0:02:05.92,Default,,0000,0000,0000,,don't listen. For example, there are
Dialogue: 0,0:02:05.92,0:02:10.87,Default,,0000,0000,0000,,more things that I can do that I can't do.
Dialogue: 0,0:02:10.87,0:02:14.51,Default,,0000,0000,0000,,If I drop something, I expect to pick it up...
Dialogue: 0,0:02:14.51,0:02:18.38,Default,,0000,0000,0000,,Just what my mother taught me; \Nyou drop it, pick it up. You dirty it...
Dialogue: 0,0:02:18.39,0:02:22.73,Default,,0000,0000,0000,,you clean it. That doesn't stop \Nbecause I use a wheelchair to
Dialogue: 0,0:02:22.73,0:02:26.62,Default,,0000,0000,0000,,get around. Having a person speak \Nand another person listen
Dialogue: 0,0:02:26.62,0:02:33.07,Default,,0000,0000,0000,,doesn't cost money, it's not a cash outlay.
Dialogue: 0,0:02:33.07,0:02:34.24,Default,,0000,0000,0000,,One of the things
Dialogue: 0,0:02:34.24,0:02:38.40,Default,,0000,0000,0000,,hospital administrators need to do is \Ntalk the people who are
Dialogue: 0,0:02:38.40,0:02:42.24,Default,,0000,0000,0000,,experts in disabilities. Those are people \Nwho are disabled themselves.
Dialogue: 0,0:02:42.61,0:02:47.04,Default,,0000,0000,0000,,I am Lisa Iezzoni, I am a physician; \NI do not practice.
Dialogue: 0,0:02:47.04,0:02:50.48,Default,,0000,0000,0000,,I'm the director of the Mongan Institute for \NHealth Policy here at the Massachusetts
Dialogue: 0,0:02:50.48,0:02:53.10,Default,,0000,0000,0000,,General Hospital and a professor at \NHarvard Medical School.
Dialogue: 0,0:02:53.10,0:02:58.19,Default,,0000,0000,0000,,I would not at all describe my story as inspiring, \NI would describe myself
Dialogue: 0,0:02:58.19,0:03:03.33,Default,,0000,0000,0000,,as a poster child for why we need \Nthe Americans with Disabilities Act.
Dialogue: 0,0:03:03.33,0:03:07.11,Default,,0000,0000,0000,,I started Harvard Medical School in \NSeptember of
Dialogue: 0,0:03:07.11,0:03:11.52,Default,,0000,0000,0000,,1980, and was diagnosed
Dialogue: 0,0:03:11.52,0:03:15.80,Default,,0000,0000,0000,,probably in January of '81 with \NMultiple Sclerosis having
Dialogue: 0,0:03:15.80,0:03:17.64,Default,,0000,0000,0000,,had symptoms of it for years.
Dialogue: 0,0:03:17.65,0:03:22.41,Default,,0000,0000,0000,,Probably in the Spring of 1983, and \NHarvard at that time
Dialogue: 0,0:03:22.41,0:03:27.77,Default,,0000,0000,0000,,often hosted dinners for students where they would give you cheese cubes and sherry.
Dialogue: 0,0:03:27.77,0:03:31.39,Default,,0000,0000,0000,,And you would kind of mingle with the administrators
Dialogue: 0,0:03:31.39,0:03:35.10,Default,,0000,0000,0000,,and leading senior physicians at the local Harvard institutions
Dialogue: 0,0:03:35.10,0:03:39.82,Default,,0000,0000,0000,,then you would all sit down to dinner afterwards, so that is what happened.
Dialogue: 0,0:03:39.82,0:03:43.33,Default,,0000,0000,0000,,I had my cheese cubes and sherry and then \Nsat down for dinner, and sitting
Dialogue: 0,0:03:43.33,0:03:47.72,Default,,0000,0000,0000,,to my right was the leader
Dialogue: 0,0:03:47.72,0:03:50.87,Default,,0000,0000,0000,,of a very large Harvard teaching hospital, \Nand I decided
Dialogue: 0,0:03:50.87,0:03:56.63,Default,,0000,0000,0000,,I was planning to do an internship \Nin medicine, and so
Dialogue: 0,0:03:56.63,0:04:00.33,Default,,0000,0000,0000,,I said to him look, here is my story; I might
Dialogue: 0,0:04:00.33,0:04:04.12,Default,,0000,0000,0000,,be able to do a half time position, maybe \Nshare it with another student or
Dialogue: 0,0:04:04.12,0:04:08.15,Default,,0000,0000,0000,,maybe do my residency for twice the \Namount of time, what would your
Dialogue: 0,0:04:08.15,0:04:12.64,Default,,0000,0000,0000,,hospital think about a person like that \Njoining your program?
Dialogue: 0,0:04:12.64,0:04:17.21,Default,,0000,0000,0000,,He paused for a second, and he thought \Nand then he said
Dialogue: 0,0:04:17.21,0:04:20.40,Default,,0000,0000,0000,,There are too many doctors in the country \Nright now for us to
Dialogue: 0,0:04:20.40,0:04:24.68,Default,,0000,0000,0000,,worry about training a handicapped person. \NIf that means
Dialogue: 0,0:04:24.68,0:04:27.72,Default,,0000,0000,0000,,that someone gets left by the wayside, so be it.
Dialogue: 0,0:04:29.22,0:04:33.28,Default,,0000,0000,0000,,John Kelly: I have a spinal cord injury at the C4 level, \NI've been
Dialogue: 0,0:04:33.28,0:04:35.99,Default,,0000,0000,0000,,disabled for over 25 years, and
Dialogue: 0,0:04:35.99,0:04:40.52,Default,,0000,0000,0000,,have used a power wheelchair that I drive \Nwith a sip-puff tube
Dialogue: 0,0:04:40.52,0:04:44.07,Default,,0000,0000,0000,,since then. I was born and raised in \NMiddletown, New Jersey
Dialogue: 0,0:04:44.07,0:04:47.79,Default,,0000,0000,0000,,which is a central New Jersey suburb of
Dialogue: 0,0:04:47.79,0:04:51.87,Default,,0000,0000,0000,,New York. It was a sledding accident and my
Dialogue: 0,0:04:51.87,0:04:57.05,Default,,0000,0000,0000,,head hit a tree and my neck got broken. \NWell the first thing I would say
Dialogue: 0,0:04:57.05,0:05:00.72,Default,,0000,0000,0000,,is that if you look at the record of changes
Dialogue: 0,0:05:00.72,0:05:04.40,Default,,0000,0000,0000,,supposedly on behalf of people with \Ndisabilities, everything that
Dialogue: 0,0:05:04.40,0:05:08.32,Default,,0000,0000,0000,,has been done, ostensibly for us, has been wildly
Dialogue: 0,0:05:08.32,0:05:13.03,Default,,0000,0000,0000,,popular among the rest of the population. \NAll you have to do is look at
Dialogue: 0,0:05:13.03,0:05:17.09,Default,,0000,0000,0000,,automatic doors, ramps, curb cuts
Dialogue: 0,0:05:17.09,0:05:21.03,Default,,0000,0000,0000,,level sidewalks for example if we
Dialogue: 0,0:05:21.03,0:05:25.30,Default,,0000,0000,0000,,can figure out how to get them. \NAdjustable tables,
Dialogue: 0,0:05:25.30,0:05:29.73,Default,,0000,0000,0000,,would certainly be great for medical professionals
Dialogue: 0,0:05:29.73,0:05:34.03,Default,,0000,0000,0000,,of different height. And, I would ask...
Dialogue: 0,0:05:34.03,0:05:37.27,Default,,0000,0000,0000,,medical professionals to listen to us and to
Dialogue: 0,0:05:37.27,0:05:41.29,Default,,0000,0000,0000,,start thinking about addressing the \Nneeds of the whole human
Dialogue: 0,0:05:41.29,0:05:45.97,Default,,0000,0000,0000,,population rather than some
Dialogue: 0,0:05:45.97,0:05:50.03,Default,,0000,0000,0000,,non-existent typical person, so
Dialogue: 0,0:05:50.03,0:05:54.90,Default,,0000,0000,0000,,hospital beds should go high \Nenough for a 6 foot 4 nurse
Dialogue: 0,0:05:54.90,0:05:57.59,Default,,0000,0000,0000,,to work with us. They should go \Nlow enough for a 5 foot nurse
Dialogue: 0,0:05:57.59,0:06:01.95,Default,,0000,0000,0000,,to work with us so that they are not injured. \NWe should be able to
Dialogue: 0,0:06:01.95,0:06:05.27,Default,,0000,0000,0000,,go to a hospital in a wheelchair get
Dialogue: 0,0:06:05.27,0:06:08.87,Default,,0000,0000,0000,,onto a gurney and get x-rayed without
Dialogue: 0,0:06:08.87,0:06:12.97,Default,,0000,0000,0000,,feeling like the best way for us \Nto do that is to take a $2000
Dialogue: 0,0:06:12.97,0:06:16.91,Default,,0000,0000,0000,,ambulance trip back and forth to the \Nhospital because the medical
Dialogue: 0,0:06:16.91,0:06:21.78,Default,,0000,0000,0000,,professional can't handle our body, \Ndon't want to deal with it.
Dialogue: 0,0:06:22.67,0:06:25.38,Default,,0000,0000,0000,,I view the health care system as
Dialogue: 0,0:06:25.38,0:06:28.62,Default,,0000,0000,0000,,one of the slower industries to kind of
Dialogue: 0,0:06:28.62,0:06:33.73,Default,,0000,0000,0000,,look themselves in the eye and say,\Nwhat do we need to do
Dialogue: 0,0:06:33.73,0:06:37.60,Default,,0000,0000,0000,,to care for our clients, our \Ncustomers, our people
Dialogue: 0,0:06:37.60,0:06:41.67,Default,,0000,0000,0000,,who have disabilities? Movie theaters \Nhave had to do it,
Dialogue: 0,0:06:41.67,0:06:45.100,Default,,0000,0000,0000,,cruise ships have had to do it. \NThe Supreme Court
Dialogue: 0,0:06:45.100,0:06:50.50,Default,,0000,0000,0000,,made sure of that, but it's been \Nfrankly really interesting
Dialogue: 0,0:06:50.50,0:06:53.47,Default,,0000,0000,0000,,that the health care system hasn't. \NThe health care system
Dialogue: 0,0:06:53.47,0:06:58.28,Default,,0000,0000,0000,,I've tried to figure out why that is...
Dialogue: 0,0:06:58.28,0:07:02.72,Default,,0000,0000,0000,,why I think the health care system \Nhas really not been at the forefront
Dialogue: 0,0:07:02.72,0:07:07.29,Default,,0000,0000,0000,,of making sure that their facilities
Dialogue: 0,0:07:07.29,0:07:10.17,Default,,0000,0000,0000,,and their communications and every aspect
Dialogue: 0,0:07:10.17,0:07:12.42,Default,,0000,0000,0000,,of their policies, etc. are accessible. The only
Dialogue: 0,0:07:12.42,0:07:17.33,Default,,0000,0000,0000,,explanation that I can come up \Nwith is because
Dialogue: 0,0:07:17.33,0:07:23.08,Default,,0000,0000,0000,,the underlying mission of healthcare is beneficence
Dialogue: 0,0:07:23.08,0:07:26.61,Default,,0000,0000,0000,,of doing good, doing humanistic, \Ngood work for people.
Dialogue: 0,0:07:26.61,0:07:30.63,Default,,0000,0000,0000,,And there's an assumption that \Nif you need to be moved,
Dialogue: 0,0:07:30.63,0:07:35.32,Default,,0000,0000,0000,,we will move you. \NYou should not have to move
Dialogue: 0,0:07:35.32,0:07:39.75,Default,,0000,0000,0000,,yourself you disabled person. \NWe are here to help you move.
Dialogue: 0,0:07:39.75,0:07:42.82,Default,,0000,0000,0000,,So, the person with a disability, \Nif they can't get up onto the table
Dialogue: 0,0:07:42.82,0:07:46.98,Default,,0000,0000,0000,,because it doesn't automatically adjust to wheelchair height, the assumption is
Dialogue: 0,0:07:46.99,0:07:51.55,Default,,0000,0000,0000,,that the practice assistants or nurses will do that. Of course there's a consequence
Dialogue: 0,0:07:51.55,0:07:54.88,Default,,0000,0000,0000,,to that. Not only does that mean that
Dialogue: 0,0:07:54.88,0:07:58.90,Default,,0000,0000,0000,,the person with a disability who might \Nhave the capability of
Dialogue: 0,0:07:58.90,0:08:02.81,Default,,0000,0000,0000,,transferring if the table height is correct
Dialogue: 0,0:08:02.81,0:08:06.70,Default,,0000,0000,0000,,can't do that independently, it also means \Nthat nurses and practice
Dialogue: 0,0:08:06.70,0:08:10.83,Default,,0000,0000,0000,,assistants are much greater risk \Nof occupational injury.
Dialogue: 0,0:08:10.83,0:08:15.10,Default,,0000,0000,0000,,My name is Frances Deolatch. I've spent
Dialogue: 0,0:08:15.10,0:08:21.69,Default,,0000,0000,0000,,I would say most of my life in a hospital.
Dialogue: 0,0:08:21.69,0:08:24.62,Default,,0000,0000,0000,,For a couple reasons. One...
Dialogue: 0,0:08:24.62,0:08:27.66,Default,,0000,0000,0000,,It was hard for my family to
Dialogue: 0,0:08:27.66,0:08:31.67,Default,,0000,0000,0000,,care for me. I have two brothers and so
Dialogue: 0,0:08:31.67,0:08:36.33,Default,,0000,0000,0000,,as my parents had to care for them
Dialogue: 0,0:08:36.33,0:08:39.52,Default,,0000,0000,0000,,as well, and with me breaking bones
Dialogue: 0,0:08:39.52,0:08:43.73,Default,,0000,0000,0000,,all the time it was really
Dialogue: 0,0:08:43.73,0:08:47.63,Default,,0000,0000,0000,,hard to have to keep me home.
Dialogue: 0,0:08:47.63,0:08:52.23,Default,,0000,0000,0000,,One time I was going into the hospital
Dialogue: 0,0:08:52.23,0:08:55.38,Default,,0000,0000,0000,,and they put me in a room where
Dialogue: 0,0:08:55.38,0:08:59.90,Default,,0000,0000,0000,,I couldn't use the bathroom because \Nthe doorway was
Dialogue: 0,0:08:59.90,0:09:04.86,Default,,0000,0000,0000,,too narrow and I said to the nurse,
Dialogue: 0,0:09:04.86,0:09:09.70,Default,,0000,0000,0000,,you know if you put me in room
Dialogue: 0,0:09:09.70,0:09:13.10,Default,,0000,0000,0000,,with a bathroom that's more accessible
Dialogue: 0,0:09:13.11,0:09:16.26,Default,,0000,0000,0000,,I can take myself to the bathroom.
Dialogue: 0,0:09:16.26,0:09:20.83,Default,,0000,0000,0000,,That nurse's reaction was: Oh, that's okay \Nwe can just help you.
Dialogue: 0,0:09:20.83,0:09:24.53,Default,,0000,0000,0000,,Don't worry about it, \Nyou can use a bed pan.
Dialogue: 0,0:09:24.53,0:09:28.90,Default,,0000,0000,0000,,We'll take you to the bathroom. \NI said yeah, that's a simple solution
Dialogue: 0,0:09:28.90,0:09:32.72,Default,,0000,0000,0000,,but I don't want it that way. \NI'd rather be in a room where I can
Dialogue: 0,0:09:32.72,0:09:36.80,Default,,0000,0000,0000,,use the bathroom myself. \NThey really need to listen
Dialogue: 0,0:09:36.80,0:09:41.08,Default,,0000,0000,0000,,to their patients. They need \Nto think to themselves...
Dialogue: 0,0:09:41.08,0:09:44.35,Default,,0000,0000,0000,,Oh yeah, well she's \Nhad this disability, she
Dialogue: 0,0:09:44.35,0:09:49.74,Default,,0000,0000,0000,,knows what's she's talking about. \NLet's take our cues from her.
Dialogue: 0,0:09:51.25,0:09:52.30,Default,,0000,0000,0000,,Doctors
Dialogue: 0,0:09:52.30,0:09:57.20,Default,,0000,0000,0000,,physicians and nurses are like other people. They've grown up in a society
Dialogue: 0,0:09:57.20,0:10:00.49,Default,,0000,0000,0000,,where disability has been \Nhistorically stigmatized, and
Dialogue: 0,0:10:00.49,0:10:04.60,Default,,0000,0000,0000,,even though they are members of a caring
Dialogue: 0,0:10:04.60,0:10:08.63,Default,,0000,0000,0000,,profession, very much so, and very much \Nhave that humanistic mission at
Dialogue: 0,0:10:08.63,0:10:12.77,Default,,0000,0000,0000,,heart, they may not fully \Nappreciate the fact that
Dialogue: 0,0:10:12.77,0:10:17.13,Default,,0000,0000,0000,,people with disabilities have lives in the \Noutside world. You know
Dialogue: 0,0:10:17.13,0:10:21.39,Default,,0000,0000,0000,,doctors typically see people with \Ndisabilities when they are sick
Dialogue: 0,0:10:21.39,0:10:26.13,Default,,0000,0000,0000,,therefore they're lying in their bed, they're inert, they're not moving, they don't look
Dialogue: 0,0:10:26.13,0:10:29.43,Default,,0000,0000,0000,,like they are necessarily out there and active \Nin their community and so people
Dialogue: 0,0:10:29.43,0:10:33.07,Default,,0000,0000,0000,,tend to forget that when the go home from \Nthe hosptial or when they home
Dialogue: 0,0:10:33.07,0:10:37.43,Default,,0000,0000,0000,,from the office, that the \Nperson is resuming their life
Dialogue: 0,0:10:37.43,0:10:41.87,Default,,0000,0000,0000,,in the community as a parent, \Nas a worker, as a partner
Dialogue: 0,0:10:41.87,0:10:46.33,Default,,0000,0000,0000,,I go out quite a bit actually, I go to restaurants.
Dialogue: 0,0:10:46.33,0:10:50.41,Default,,0000,0000,0000,,I go to concerts. My favorite kind of
Dialogue: 0,0:10:50.41,0:10:54.33,Default,,0000,0000,0000,,groups are from Motown. And,
Dialogue: 0,0:10:54.33,0:10:57.97,Default,,0000,0000,0000,,my favorite group is the Temptations. (music)
Dialogue: 0,0:10:57.97,0:11:01.58,Default,,0000,0000,0000,,I would just like people to know that \NI've met the Temptations...
Dialogue: 0,0:11:01.58,0:11:05.62,Default,,0000,0000,0000,,many times.
Dialogue: 0,0:11:05.62,0:11:09.34,Default,,0000,0000,0000,,That was really a thrill to me, and
Dialogue: 0,0:11:09.34,0:11:14.42,Default,,0000,0000,0000,,when I told a nurse once that \NI went to concerts
Dialogue: 0,0:11:14.42,0:11:17.95,Default,,0000,0000,0000,,she was like; You go out?
Dialogue: 0,0:11:17.95,0:11:22.39,Default,,0000,0000,0000,,Music: My Girl
Dialogue: 0,0:11:22.39,0:11:24.69,Default,,0000,0000,0000,,Music: My Girl
Dialogue: 0,0:11:24.69,0:11:30.44,Default,,0000,0000,0000,,Music: My Girl
Dialogue: 0,0:11:33.90,0:11:37.53,Default,,0000,0000,0000,,Stacy Berloff: I grew up in Framingham, Massachusetts
Dialogue: 0,0:11:37.53,0:11:41.93,Default,,0000,0000,0000,,They told me I had Juvenile \NRheumatoid Arthritis, and
Dialogue: 0,0:11:41.93,0:11:45.72,Default,,0000,0000,0000,,at that point that's all that they knew.
Dialogue: 0,0:11:45.72,0:11:49.87,Default,,0000,0000,0000,,
Dialogue: 0,0:11:49.87,0:11:58.01,Default,,0000,0000,0000,,So I started with my first bout \Nof CRPS at 8 years old
Dialogue: 0,0:11:58.01,0:11:59.47,Default,,0000,0000,0000,,and I had had
Dialogue: 0,0:11:59.47,0:12:04.86,Default,,0000,0000,0000,,the RSD for several years before that, \Njust undiagnosed
Dialogue: 0,0:12:04.86,0:12:07.27,Default,,0000,0000,0000,,probably since like 6 years old
Dialogue: 0,0:12:07.27,0:12:12.13,Default,,0000,0000,0000,,and I was dealing with it without \Nmedication, but it was pretty bad
Dialogue: 0,0:12:12.13,0:12:18.20,Default,,0000,0000,0000,,My biggest frustration is \Nthat people don't listen.
Dialogue: 0,0:12:18.20,0:12:19.97,Default,,0000,0000,0000,,It has taken me
Dialogue: 0,0:12:19.97,0:12:22.33,Default,,0000,0000,0000,,a very long time to get the physicians that
Dialogue: 0,0:12:22.33,0:12:27.38,Default,,0000,0000,0000,,care for me in the way \NI feel like I need to be
Dialogue: 0,0:12:27.38,0:12:31.78,Default,,0000,0000,0000,,cared for. I've search high and low
Dialogue: 0,0:12:31.78,0:12:36.50,Default,,0000,0000,0000,,to find doctors that have \Nbeen appropriate for me.
Dialogue: 0,0:12:36.50,0:12:40.19,Default,,0000,0000,0000,,When you have a patient come \Nto you and has been
Dialogue: 0,0:12:40.19,0:12:43.32,Default,,0000,0000,0000,,through a lot, listen to your \Npatient. They often
Dialogue: 0,0:12:43.32,0:12:47.08,Default,,0000,0000,0000,,know better than what the textbook says.
Dialogue: 0,0:12:47.08,0:12:51.30,Default,,0000,0000,0000,,They may not all the symptoms, \Nbut your patients know what they're
Dialogue: 0,0:12:51.30,0:12:56.93,Default,,0000,0000,0000,,going through. And that's a \Nbig thing I've learned over and over
Dialogue: 0,0:12:56.93,0:13:00.01,Default,,0000,0000,0000,,going through all my issues.
Dialogue: 0,0:13:00.01,0:13:03.43,Default,,0000,0000,0000,,I've been told so many times that I'm
Dialogue: 0,0:13:03.43,0:13:07.93,Default,,0000,0000,0000,,a psych case, because \Nit doesn't fit the book
Dialogue: 0,0:13:07.93,0:13:11.67,Default,,0000,0000,0000,,and then eventually, years down
Dialogue: 0,0:13:11.67,0:13:17.86,Default,,0000,0000,0000,,the road they figure out what it is
Dialogue: 0,0:13:17.86,0:13:20.33,Default,,0000,0000,0000,,and I finally have had
Dialogue: 0,0:13:20.33,0:13:23.33,Default,,0000,0000,0000,,doctors say, well patients \Nlike you, you don't
Dialogue: 0,0:13:23.33,0:13:27.64,Default,,0000,0000,0000,,fit the book, you write the book. \NBut that doesn't help me at
Dialogue: 0,0:13:27.64,0:13:32.35,Default,,0000,0000,0000,,time, when I'm going through \Nthe issues and they are
Dialogue: 0,0:13:32.35,0:13:36.78,Default,,0000,0000,0000,,telling me that it's just impossible.
Dialogue: 0,0:13:36.78,0:13:41.28,Default,,0000,0000,0000,,People with disabilities are people, \Nthey are not just numbers
Dialogue: 0,0:13:41.28,0:13:46.12,Default,,0000,0000,0000,,They're not just statistics, they're not just
Dialogue: 0,0:13:46.12,0:13:48.23,Default,,0000,0000,0000,,people that they are going to have to
Dialogue: 0,0:13:48.23,0:13:51.71,Default,,0000,0000,0000,,deal with and they going \Nto have to do things for
Dialogue: 0,0:13:51.71,0:13:57.26,Default,,0000,0000,0000,,but we are actually people, and that we have feelings and that we have emotions
Dialogue: 0,0:13:57.26,0:14:00.64,Default,,0000,0000,0000,,and that we are going to be \Ncoming through their hospital
Dialogue: 0,0:14:00.64,0:14:04.83,Default,,0000,0000,0000,,doors, looking for care, equal care
Dialogue: 0,0:14:04.83,0:14:08.87,Default,,0000,0000,0000,,equal access to care, and that's what
Dialogue: 0,0:14:08.87,0:14:12.93,Default,,0000,0000,0000,,they say the give; equal care to all \Npatients that come through
Dialogue: 0,0:14:12.93,0:14:16.73,Default,,0000,0000,0000,,their doors, but they're not \Ngiving equal access to care
Dialogue: 0,0:14:16.73,0:14:19.14,Default,,0000,0000,0000,,to people with disabilities.
Dialogue: 0,0:14:19.80,0:14:24.92,Default,,0000,0000,0000,,Jean McGuire: You know, one of the little known
Dialogue: 0,0:14:24.92,0:14:29.30,Default,,0000,0000,0000,,features of what's going on in our \Npopulation right nows is the expanding
Dialogue: 0,0:14:29.30,0:14:33.51,Default,,0000,0000,0000,,number of people living with disabilities. \NSo we focus a lot
Dialogue: 0,0:14:33.51,0:14:37.25,Default,,0000,0000,0000,,on more people that are \Ngetting older, and as
Dialogue: 0,0:14:37.25,0:14:39.52,Default,,0000,0000,0000,,you age you more likely to have a disability, \Nbut the truth is more people
Dialogue: 0,0:14:39.52,0:14:45.66,Default,,0000,0000,0000,,with disabilities are living longer. \NPeople live after car accidents, they
Dialogue: 0,0:14:45.66,0:14:49.18,Default,,0000,0000,0000,,live after Iraq, they live after serious ski
Dialogue: 0,0:14:49.18,0:14:53.30,Default,,0000,0000,0000,,accidents, they live after developmental
Dialogue: 0,0:14:53.30,0:14:56.90,Default,,0000,0000,0000,,disorders that used to take them ealy in their lives. So the truth is the
Dialogue: 0,0:14:56.90,0:15:01.49,Default,,0000,0000,0000,,prevalence of people living with disabilities \Nis larger than it's ever been, and it's
Dialogue: 0,0:15:01.49,0:15:05.83,Default,,0000,0000,0000,,going to continue to grow. So it's \Nany one of us, at any particular
Dialogue: 0,0:15:05.83,0:15:09.71,Default,,0000,0000,0000,,moment. And, any family member of ours
Dialogue: 0,0:15:09.71,0:15:13.29,Default,,0000,0000,0000,,so figuring out how we make sure that
Dialogue: 0,0:15:13.29,0:15:17.42,Default,,0000,0000,0000,,accessible health care is there \Nfor all people, including
Dialogue: 0,0:15:17.42,0:15:21.77,Default,,0000,0000,0000,,those of us who either now are, \Nor will become disabled is an incredibly
Dialogue: 0,0:15:21.77,0:15:24.75,Default,,0000,0000,0000,,important public health \Nand public policy issue.
Dialogue: 0,0:15:24.83,0:15:30.63,Default,,0000,0000,0000,,The Americans with Disabilities Act, \Nis still a work in progress.
Dialogue: 0,0:15:30.63,0:15:34.00,Default,,0000,0000,0000,,So twenty years later we're \Nstill appreciating the
Dialogue: 0,0:15:34.00,0:15:38.43,Default,,0000,0000,0000,,advances we've made and understanding \Nwhere the challenges still are. And, so
Dialogue: 0,0:15:38.43,0:15:41.97,Default,,0000,0000,0000,,there are many adjustments that hospitals
Dialogue: 0,0:15:41.97,0:15:44.29,Default,,0000,0000,0000,,and other health care settings and other \Npublic buildings have made, in
Dialogue: 0,0:15:44.29,0:15:50.02,Default,,0000,0000,0000,,that time. Wider doors, ramps \Nin and out, handles
Dialogue: 0,0:15:50.02,0:15:54.69,Default,,0000,0000,0000,,that people can operate. \NBut, true compliance with the ADA
Dialogue: 0,0:15:54.69,0:15:58.18,Default,,0000,0000,0000,,and true compliance with the vision of \Nhealth care for all requires
Dialogue: 0,0:15:58.18,0:16:02.12,Default,,0000,0000,0000,,more than that. And actually \Nthat's become a very vital
Dialogue: 0,0:16:02.12,0:16:07.59,Default,,0000,0000,0000,,public policy debate. Throughout \Nhealth care reform you see many indications
Dialogue: 0,0:16:07.59,0:16:10.65,Default,,0000,0000,0000,,about how disability \Nand access for health care
Dialogue: 0,0:16:10.65,0:16:14.66,Default,,0000,0000,0000,,for people with disabilities is \Ngoing to continue to be an important focus.
Dialogue: 0,0:16:15.74,0:16:19.49,Default,,0000,0000,0000,,John Kelly: The situation is really urgent, because...
Dialogue: 0,0:16:19.49,0:16:23.20,Default,,0000,0000,0000,,this happens to me and it happens to other people with severe disabilities
Dialogue: 0,0:16:23.20,0:16:27.89,Default,,0000,0000,0000,,I'm in a crisis, I think I really \Nshould go to the hospital...
Dialogue: 0,0:16:27.89,0:16:31.07,Default,,0000,0000,0000,,and I have this moment where \NI think, you know...
Dialogue: 0,0:16:31.07,0:16:35.11,Default,,0000,0000,0000,,maybe dying would be a little bit better\Nafter all. Because going to the
Dialogue: 0,0:16:35.11,0:16:39.02,Default,,0000,0000,0000,,hospital is so unbelievably traumatic.
Dialogue: 0,0:16:39.03,0:16:43.20,Default,,0000,0000,0000,,People don't introduce themselves, it's very
Dialogue: 0,0:16:43.20,0:16:47.33,Default,,0000,0000,0000,,disorienting. People will not answer questions
Dialogue: 0,0:16:47.33,0:16:52.23,Default,,0000,0000,0000,,People are harsh and in a hurry,
Dialogue: 0,0:16:52.23,0:16:56.20,Default,,0000,0000,0000,,and people are incredibly disrespectful.
Dialogue: 0,0:16:56.20,0:17:00.07,Default,,0000,0000,0000,,I had a case where I had bleeding...
Dialogue: 0,0:17:00.07,0:17:03.39,Default,,0000,0000,0000,,from my testicles, and
Dialogue: 0,0:17:03.39,0:17:08.23,Default,,0000,0000,0000,,finally they had to have someone \Ncome down and cauterize it
Dialogue: 0,0:17:08.23,0:17:11.85,Default,,0000,0000,0000,,because it kept bleeding, and a nurse
Dialogue: 0,0:17:11.85,0:17:15.49,Default,,0000,0000,0000,,said to the young intern, who had never introduced himself to me..
Dialogue: 0,0:17:15.49,0:17:20.33,Default,,0000,0000,0000,,isn't that painful? And he said; Oh, it doesn't matter he can feel it anyway.
Dialogue: 0,0:17:20.33,0:17:23.23,Default,,0000,0000,0000,,He didn't even know I was there. \NI was just a
Dialogue: 0,0:17:23.23,0:17:27.10,Default,,0000,0000,0000,,thing to him. You know,
Dialogue: 0,0:17:27.12,0:17:32.58,Default,,0000,0000,0000,,people value -- we value our dignity
Dialogue: 0,0:17:32.58,0:17:34.96,Default,,0000,0000,0000,,sometimes more than our health.
Dialogue: 0,0:17:39.87,0:17:43.33,Default,,0000,0000,0000,,Closing Music