WEBVTT 00:00:01.000 --> 00:00:05.733 Opening Music 00:00:12.113 --> 00:00:16.121 Joanne: People who are disabled aren't broken 00:00:16.567 --> 00:00:21.159 We're just challenged. 00:00:21.436 --> 00:00:24.752 We have different abilities. 00:00:24.752 --> 00:00:27.934 We're not all the same, and recognize 00:00:27.934 --> 00:00:32.136 that we are different... 00:00:32.136 --> 00:00:36.548 and recognize that we do have needs. 00:00:36.548 --> 00:00:38.499 Everyone has needs. 00:01:02.717 --> 00:01:04.853 My name is Joanne Daniels-Finegold and I live in 00:01:04.853 --> 00:01:08.898 Braintree Massachusetts. I grew up in Orange, New Jersey 00:01:08.898 --> 00:01:11.500 ah, having 00:01:11.500 --> 00:01:17.567 just a normal childhood -- with asthma 00:01:17.567 --> 00:01:21.525 and just going through school, doing well. 00:01:21.525 --> 00:01:25.914 Graduating from Orange High School, and going on to UNH. 00:01:25.914 --> 00:01:30.333 Having a disabling condition made me more determined to just 00:01:30.333 --> 00:01:32.800 do things that needed to get done. It just made things harder 00:01:32.800 --> 00:01:36.943 to do, but it didn't make things impossible to do. 00:01:36.943 --> 00:01:42.300 Being raised by a very strong mother, grandparents and dad 00:01:42.300 --> 00:01:46.881 there was no question as to 00:01:46.881 --> 00:01:52.598 to keep on going. Not persevering was not an option. 00:01:52.613 --> 00:01:57.625 Oddly enough one of the most basic challenges when you have 00:01:57.641 --> 00:02:01.440 a disabling condition is dealing with other people. People who... 00:02:01.440 --> 00:02:05.917 don't listen. For example, there are 00:02:05.917 --> 00:02:10.867 more things that I can do that I can't do. 00:02:10.867 --> 00:02:14.514 If I drop something, I expect to pick it up... 00:02:14.514 --> 00:02:18.375 Just what my mother taught me; you drop it, pick it up. You dirty it... 00:02:18.390 --> 00:02:22.729 you clean it. That doesn't stop because I use a wheelchair to 00:02:22.729 --> 00:02:26.623 get around. Having a person speak and another person listen 00:02:26.623 --> 00:02:33.067 doesn't cost money, it's not a cash outlay. 00:02:33.067 --> 00:02:34.238 One of the things 00:02:34.238 --> 00:02:38.400 hospital administrators need to do is talk the people who are 00:02:38.400 --> 00:02:42.240 experts in disabilities. Those are people who are disabled themselves. 00:02:42.609 --> 00:02:47.044 I am Lisa Iezzoni, I am a physician; I do not practice. 00:02:47.044 --> 00:02:50.481 I'm the director of the Mongan Institute for Health Policy here at the Massachusetts 00:02:50.481 --> 00:02:53.100 General Hospital and a professor at Harvard Medical School. 00:02:53.100 --> 00:02:58.190 I would not at all describe my story as inspiring, I would describe myself 00:02:58.190 --> 00:03:03.333 as a poster child for why we need the Americans with Disabilities Act. 00:03:03.333 --> 00:03:07.106 I started Harvard Medical School in September of 00:03:07.106 --> 00:03:11.518 1980, and was diagnosed 00:03:11.518 --> 00:03:15.800 probably in January of '81 with Multiple Sclerosis having 00:03:15.800 --> 00:03:17.636 had symptoms of it for years. 00:03:17.652 --> 00:03:22.408 Probably in the Spring of 1983, and Harvard at that time 00:03:22.408 --> 00:03:27.767 often hosted dinners for students where they would give you cheese cubes and sherry. 00:03:27.767 --> 00:03:31.394 And you would kind of mingle with the administrators 00:03:31.394 --> 00:03:35.100 and leading senior physicians at the local Harvard institutions 00:03:35.100 --> 00:03:39.823 then you would all sit down to dinner afterwards, so that is what happened. 00:03:39.823 --> 00:03:43.333 I had my cheese cubes and sherry and then sat down for dinner, and sitting 00:03:43.333 --> 00:03:47.718 to my right was the leader 00:03:47.718 --> 00:03:50.867 of a very large Harvard teaching hospital, and I decided 00:03:50.867 --> 00:03:56.633 I was planning to do an internship in medicine, and so 00:03:56.633 --> 00:04:00.327 I said to him look, here is my story; I might 00:04:00.327 --> 00:04:04.122 be able to do a half time position, maybe share it with another student or 00:04:04.122 --> 00:04:08.152 maybe do my residency for twice the amount of time, what would your 00:04:08.152 --> 00:04:12.635 hospital think about a person like that joining your program? 00:04:12.635 --> 00:04:17.207 He paused for a second, and he thought and then he said 00:04:17.207 --> 00:04:20.400 There are too many doctors in the country right now for us to 00:04:20.400 --> 00:04:24.684 worry about training a handicapped person. If that means 00:04:24.684 --> 00:04:27.715 that someone gets left by the wayside, so be it. 00:04:29.223 --> 00:04:33.285 John Kelly: I have a spinal cord injury at the C4 level, I've been 00:04:33.285 --> 00:04:35.992 disabled for over 25 years, and 00:04:35.992 --> 00:04:40.520 have used a power wheelchair that I drive with a sip-puff tube 00:04:40.520 --> 00:04:44.067 since then. I was born and raised in Middletown, New Jersey 00:04:44.067 --> 00:04:47.788 which is a central New Jersey suburb of 00:04:47.788 --> 00:04:51.867 New York. It was a sledding accident and my 00:04:51.867 --> 00:04:57.053 head hit a tree and my neck got broken. Well the first thing I would say 00:04:57.053 --> 00:05:00.722 is that if you look at the record of changes 00:05:00.722 --> 00:05:04.400 supposedly on behalf of people with disabilities, everything that 00:05:04.400 --> 00:05:08.315 has been done, ostensibly for us, has been wildly 00:05:08.315 --> 00:05:13.033 popular among the rest of the population. All you have to do is look at 00:05:13.033 --> 00:05:17.092 automatic doors, ramps, curb cuts 00:05:17.092 --> 00:05:21.033 level sidewalks for example if we 00:05:21.033 --> 00:05:25.300 can figure out how to get them. Adjustable tables, 00:05:25.300 --> 00:05:29.733 would certainly be great for medical professionals 00:05:29.733 --> 00:05:34.033 of different height. And, I would ask... 00:05:34.033 --> 00:05:37.267 medical professionals to listen to us and to 00:05:37.267 --> 00:05:41.287 start thinking about addressing the needs of the whole human 00:05:41.287 --> 00:05:45.967 population rather than some 00:05:45.967 --> 00:05:50.033 non-existent typical person, so 00:05:50.033 --> 00:05:54.900 hospital beds should go high enough for a 6 foot 4 nurse 00:05:54.900 --> 00:05:57.592 to work with us. They should go low enough for a 5 foot nurse 00:05:57.592 --> 00:06:01.947 to work with us so that they are not injured. We should be able to 00:06:01.947 --> 00:06:05.267 go to a hospital in a wheelchair get 00:06:05.267 --> 00:06:08.867 onto a gurney and get x-rayed without 00:06:08.867 --> 00:06:12.967 feeling like the best way for us to do that is to take a $2000 00:06:12.967 --> 00:06:16.906 ambulance trip back and forth to the hospital because the medical 00:06:16.906 --> 00:06:21.782 professional can't handle our body, don't want to deal with it. 00:06:22.674 --> 00:06:25.384 I view the health care system as 00:06:25.384 --> 00:06:28.622 one of the slower industries to kind of 00:06:28.622 --> 00:06:33.733 look themselves in the eye and say, what do we need to do 00:06:33.733 --> 00:06:37.600 to care for our clients, our customers, our people 00:06:37.600 --> 00:06:41.667 who have disabilities? Movie theaters have had to do it, 00:06:41.667 --> 00:06:45.996 cruise ships have had to do it. The Supreme Court 00:06:45.996 --> 00:06:50.500 made sure of that, but it's been frankly really interesting 00:06:50.500 --> 00:06:53.467 that the health care system hasn't. The health care system 00:06:53.467 --> 00:06:58.284 I've tried to figure out why that is... 00:06:58.284 --> 00:07:02.719 why I think the health care system has really not been at the forefront 00:07:02.719 --> 00:07:07.294 of making sure that their facilities 00:07:07.294 --> 00:07:10.167 and their communications and every aspect 00:07:10.167 --> 00:07:12.425 of their policies, etc. are accessible. The only 00:07:12.425 --> 00:07:17.333 explanation that I can come up with is because 00:07:17.333 --> 00:07:23.083 the underlying mission of healthcare is beneficence 00:07:23.083 --> 00:07:26.606 of doing good, doing humanistic, good work for people. 00:07:26.606 --> 00:07:30.633 And there's an assumption that if you need to be moved, 00:07:30.633 --> 00:07:35.320 we will move you. You should not have to move 00:07:35.320 --> 00:07:39.748 yourself you disabled person. We are here to help you move. 00:07:39.748 --> 00:07:42.819 So, the person with a disability, if they can't get up onto the table 00:07:42.819 --> 00:07:46.977 because it doesn't automatically adjust to wheelchair height, the assumption is 00:07:46.992 --> 00:07:51.551 that the practice assistants or nurses will do that. Of course there's a consequence 00:07:51.551 --> 00:07:54.882 to that. Not only does that mean that 00:07:54.882 --> 00:07:58.900 the person with a disability who might have the capability of 00:07:58.900 --> 00:08:02.814 transferring if the table height is correct 00:08:02.814 --> 00:08:06.700 can't do that independently, it also means that nurses and practice 00:08:06.700 --> 00:08:10.833 assistants are much greater risk of occupational injury. 00:08:10.833 --> 00:08:15.100 My name is Frances Deolatch. I've spent 00:08:15.100 --> 00:08:21.690 I would say most of my life in a hospital. 00:08:21.690 --> 00:08:24.616 For a couple reasons. One... 00:08:24.616 --> 00:08:27.658 It was hard for my family to 00:08:27.658 --> 00:08:31.667 care for me. I have two brothers and so 00:08:31.667 --> 00:08:36.333 as my parents had to care for them 00:08:36.333 --> 00:08:39.523 as well, and with me breaking bones 00:08:39.523 --> 00:08:43.726 all the time it was really 00:08:43.726 --> 00:08:47.627 hard to have to keep me home. 00:08:47.627 --> 00:08:52.233 One time I was going into the hospital 00:08:52.233 --> 00:08:55.382 and they put me in a room where 00:08:55.382 --> 00:08:59.900 I couldn't use the bathroom because the doorway was 00:08:59.900 --> 00:09:04.856 too narrow and I said to the nurse, 00:09:04.856 --> 00:09:09.700 you know if you put me in room 00:09:09.700 --> 00:09:13.098 with a bathroom that's more accessible 00:09:13.113 --> 00:09:16.257 I can take myself to the bathroom. 00:09:16.257 --> 00:09:20.833 That nurse's reaction was: Oh, that's okay we can just help you. 00:09:20.833 --> 00:09:24.533 Don't worry about it, you can use a bed pan. 00:09:24.533 --> 00:09:28.900 We'll take you to the bathroom. I said yeah, that's a simple solution 00:09:28.900 --> 00:09:32.720 but I don't want it that way. I'd rather be in a room where I can 00:09:32.720 --> 00:09:36.800 use the bathroom myself. They really need to listen 00:09:36.800 --> 00:09:41.079 to their patients. They need to think to themselves... 00:09:41.079 --> 00:09:44.353 Oh yeah, well she's had this disability, she 00:09:44.353 --> 00:09:49.740 knows what's she's talking about. Let's take our cues from her. 00:09:51.248 --> 00:09:52.300 Doctors 00:09:52.300 --> 00:09:57.200 physicians and nurses are like other people. They've grown up in a society 00:09:57.200 --> 00:10:00.491 where disability has been historically stigmatized, and 00:10:00.491 --> 00:10:04.600 even though they are members of a caring 00:10:04.600 --> 00:10:08.633 profession, very much so, and very much have that humanistic mission at 00:10:08.633 --> 00:10:12.767 heart, they may not fully appreciate the fact that 00:10:12.767 --> 00:10:17.133 people with disabilities have lives in the outside world. You know 00:10:17.133 --> 00:10:21.389 doctors typically see people with disabilities when they are sick 00:10:21.389 --> 00:10:26.133 therefore they're lying in their bed, they're inert, they're not moving, they don't look 00:10:26.133 --> 00:10:29.433 like they are necessarily out there and active in their community and so people 00:10:29.433 --> 00:10:33.067 tend to forget that when the go home from the hosptial or when they home 00:10:33.067 --> 00:10:37.433 from the office, that the person is resuming their life 00:10:37.433 --> 00:10:41.867 in the community as a parent, as a worker, as a partner 00:10:41.867 --> 00:10:46.327 I go out quite a bit actually, I go to restaurants. 00:10:46.327 --> 00:10:50.414 I go to concerts. My favorite kind of 00:10:50.414 --> 00:10:54.333 groups are from Motown. And, 00:10:54.333 --> 00:10:57.967 my favorite group is the Temptations. (music) 00:10:57.967 --> 00:11:01.583 I would just like people to know that I've met the Temptations... 00:11:01.583 --> 00:11:05.623 many times. 00:11:05.623 --> 00:11:09.338 That was really a thrill to me, and 00:11:09.338 --> 00:11:14.424 when I told a nurse once that I went to concerts 00:11:14.424 --> 00:11:17.953 she was like; You go out? 00:11:17.953 --> 00:11:22.388 Music: My Girl 00:11:22.388 --> 00:11:24.687 Music: My Girl 00:11:24.687 --> 00:11:30.445 Music: My Girl 00:11:33.900 --> 00:11:37.527 Stacy Berloff: I grew up in Framingham, Massachusetts 00:11:37.527 --> 00:11:41.933 They told me I had Juvenile Rheumatoid Arthritis, and 00:11:41.933 --> 00:11:45.724 at that point that's all that they knew. 00:11:45.724 --> 00:11:49.867 00:11:49.867 --> 00:11:58.007 So I started with my first bout of CRPS at 8 years old 00:11:58.007 --> 00:11:59.470 and I had had 00:11:59.470 --> 00:12:04.857 the RSD for several years before that, just undiagnosed 00:12:04.857 --> 00:12:07.267 probably since like 6 years old 00:12:07.267 --> 00:12:12.133 and I was dealing with it without medication, but it was pretty bad 00:12:12.133 --> 00:12:18.200 My biggest frustration is that people don't listen. 00:12:18.200 --> 00:12:19.967 It has taken me 00:12:19.967 --> 00:12:22.333 a very long time to get the physicians that 00:12:22.333 --> 00:12:27.385 care for me in the way I feel like I need to be 00:12:27.385 --> 00:12:31.782 cared for. I've search high and low 00:12:31.782 --> 00:12:36.500 to find doctors that have been appropriate for me. 00:12:36.500 --> 00:12:40.192 When you have a patient come to you and has been 00:12:40.192 --> 00:12:43.325 through a lot, listen to your patient. They often 00:12:43.325 --> 00:12:47.077 know better than what the textbook says. 00:12:47.077 --> 00:12:51.300 They may not all the symptoms, but your patients know what they're 00:12:51.300 --> 00:12:56.933 going through. And that's a big thing I've learned over and over 00:12:56.933 --> 00:13:00.014 going through all my issues. 00:13:00.014 --> 00:13:03.433 I've been told so many times that I'm 00:13:03.433 --> 00:13:07.933 a psych case, because it doesn't fit the book 00:13:07.933 --> 00:13:11.667 and then eventually, years down 00:13:11.667 --> 00:13:17.861 the road they figure out what it is 00:13:17.861 --> 00:13:20.333 and I finally have had 00:13:20.333 --> 00:13:23.333 doctors say, well patients like you, you don't 00:13:23.333 --> 00:13:27.638 fit the book, you write the book. But that doesn't help me at 00:13:27.638 --> 00:13:32.347 time, when I'm going through the issues and they are 00:13:32.347 --> 00:13:36.777 telling me that it's just impossible. 00:13:36.777 --> 00:13:41.280 People with disabilities are people, they are not just numbers 00:13:41.280 --> 00:13:46.122 They're not just statistics, they're not just 00:13:46.122 --> 00:13:48.229 people that they are going to have to 00:13:48.229 --> 00:13:51.714 deal with and they going to have to do things for 00:13:51.714 --> 00:13:57.256 but we are actually people, and that we have feelings and that we have emotions 00:13:57.256 --> 00:14:00.644 and that we are going to be coming through their hospital 00:14:00.644 --> 00:14:04.833 doors, looking for care, equal care 00:14:04.833 --> 00:14:08.867 equal access to care, and that's what 00:14:08.867 --> 00:14:12.933 they say the give; equal care to all patients that come through 00:14:12.933 --> 00:14:16.726 their doors, but they're not giving equal access to care 00:14:16.726 --> 00:14:19.138 to people with disabilities. 00:14:19.800 --> 00:14:24.920 Jean McGuire: You know, one of the little known 00:14:24.920 --> 00:14:29.300 features of what's going on in our population right nows is the expanding 00:14:29.300 --> 00:14:33.511 number of people living with disabilities. So we focus a lot 00:14:33.511 --> 00:14:37.250 on more people that are getting older, and as 00:14:37.250 --> 00:14:39.525 you age you more likely to have a disability, but the truth is more people 00:14:39.525 --> 00:14:45.656 with disabilities are living longer. People live after car accidents, they 00:14:45.656 --> 00:14:49.185 live after Iraq, they live after serious ski 00:14:49.185 --> 00:14:53.300 accidents, they live after developmental 00:14:53.300 --> 00:14:56.900 disorders that used to take them ealy in their lives. So the truth is the 00:14:56.900 --> 00:15:01.492 prevalence of people living with disabilities is larger than it's ever been, and it's 00:15:01.492 --> 00:15:05.833 going to continue to grow. So it's any one of us, at any particular 00:15:05.833 --> 00:15:09.711 moment. And, any family member of ours 00:15:09.711 --> 00:15:13.287 so figuring out how we make sure that 00:15:13.287 --> 00:15:17.420 accessible health care is there for all people, including 00:15:17.420 --> 00:15:21.767 those of us who either now are, or will become disabled is an incredibly 00:15:21.767 --> 00:15:24.753 important public health and public policy issue. 00:15:24.830 --> 00:15:30.633 The Americans with Disabilities Act, is still a work in progress. 00:15:30.633 --> 00:15:34.000 So twenty years later we're still appreciating the 00:15:34.000 --> 00:15:38.434 advances we've made and understanding where the challenges still are. And, so 00:15:38.434 --> 00:15:41.966 there are many adjustments that hospitals 00:15:41.966 --> 00:15:44.286 and other health care settings and other public buildings have made, in 00:15:44.286 --> 00:15:50.021 that time. Wider doors, ramps in and out, handles 00:15:50.021 --> 00:15:54.692 that people can operate. But, true compliance with the ADA 00:15:54.692 --> 00:15:58.176 and true compliance with the vision of health care for all requires 00:15:58.176 --> 00:16:02.125 more than that. And actually that's become a very vital 00:16:02.125 --> 00:16:07.590 public policy debate. Throughout health care reform you see many indications 00:16:07.590 --> 00:16:10.648 about how disability and access for health care 00:16:10.648 --> 00:16:14.658 for people with disabilities is going to continue to be an important focus. 00:16:15.735 --> 00:16:19.487 John Kelly: The situation is really urgent, because... 00:16:19.487 --> 00:16:23.200 this happens to me and it happens to other people with severe disabilities 00:16:23.200 --> 00:16:27.893 I'm in a crisis, I think I really should go to the hospital... 00:16:27.893 --> 00:16:31.067 and I have this moment where I think, you know... 00:16:31.067 --> 00:16:35.110 maybe dying would be a little bit better after all. Because going to the 00:16:35.110 --> 00:16:39.018 hospital is so unbelievably traumatic. 00:16:39.033 --> 00:16:43.200 People don't introduce themselves, it's very 00:16:43.200 --> 00:16:47.333 disorienting. People will not answer questions 00:16:47.333 --> 00:16:52.233 People are harsh and in a hurry, 00:16:52.233 --> 00:16:56.200 and people are incredibly disrespectful. 00:16:56.200 --> 00:17:00.067 I had a case where I had bleeding... 00:17:00.067 --> 00:17:03.393 from my testicles, and 00:17:03.393 --> 00:17:08.233 finally they had to have someone come down and cauterize it 00:17:08.233 --> 00:17:11.848 because it kept bleeding, and a nurse 00:17:11.848 --> 00:17:15.494 said to the young intern, who had never introduced himself to me.. 00:17:15.494 --> 00:17:20.333 isn't that painful? And he said; Oh, it doesn't matter he can feel it anyway. 00:17:20.333 --> 00:17:23.233 He didn't even know I was there. I was just a 00:17:23.233 --> 00:17:27.102 thing to him. You know, 00:17:27.118 --> 00:17:32.585 people value -- we value our dignity 00:17:32.585 --> 00:17:34.964 sometimes more than our health. 00:17:39.867 --> 00:17:43.333 Closing Music