[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:00.00,0:00:05.28,Default,,0000,0000,0000,,Hi, my name is Joseph Scamardo and I \Nam an assistant professor of philosophy
Dialogue: 0,0:00:05.28,0:00:09.24,Default,,0000,0000,0000,,and associate Director of the I\Nnstitute of Public Affairs
Dialogue: 0,0:00:09.24,0:00:11.45,Default,,0000,0000,0000,,at San Diego State University.
Dialogue: 0,0:00:11.45,0:00:16.33,Default,,0000,0000,0000,,I specialize in philosophy \Ndisability and bioethics
Dialogue: 0,0:00:16.58,0:00:19.15,Default,,0000,0000,0000,,I also identify as disabled.
Dialogue: 0,0:00:19.15,0:00:22.26,Default,,0000,0000,0000,,I have a spinal cord injury
Dialogue: 0,0:00:22.26,0:00:25.42,Default,,0000,0000,0000,,as well as a rare kind of dwarfism, and so
Dialogue: 0,0:00:25.42,0:00:28.57,Default,,0000,0000,0000,,you get two for the price of one with me.
Dialogue: 0,0:00:28.81,0:00:35.89,Default,,0000,0000,0000,,So my first memory of discrimination was
Dialogue: 0,0:00:36.59,0:00:40.59,Default,,0000,0000,0000,,well, it's hard to say
Dialogue: 0,0:00:43.30,0:00:47.12,Default,,0000,0000,0000,,I have lots of memories as far as
Dialogue: 0,0:00:47.12,0:00:51.77,Default,,0000,0000,0000,,the experience of stigma or bigotry
Dialogue: 0,0:00:51.77,0:00:54.82,Default,,0000,0000,0000,,mostly around my dwarfism.
Dialogue: 0,0:00:54.82,0:00:56.41,Default,,0000,0000,0000,,and so, you know
Dialogue: 0,0:00:56.41,0:01:00.25,Default,,0000,0000,0000,,I have lot's of early memories around that
Dialogue: 0,0:01:00.25,0:01:03.53,Default,,0000,0000,0000,,with children staring and laughing
Dialogue: 0,0:01:03.53,0:01:07.76,Default,,0000,0000,0000,,and that sort of thing from a very young age.
Dialogue: 0,0:01:10.10,0:01:13.50,Default,,0000,0000,0000,,Then as far as, sort of
Dialogue: 0,0:01:13.50,0:01:15.49,Default,,0000,0000,0000,,a more systematic discrimination
Dialogue: 0,0:01:15.49,0:01:17.43,Default,,0000,0000,0000,,that sort of excluded me from something
Dialogue: 0,0:01:17.43,0:01:22.34,Default,,0000,0000,0000,,that I wanted to do.
Dialogue: 0,0:01:22.34,0:01:25.85,Default,,0000,0000,0000,,I had a pretty good experience as a child,
Dialogue: 0,0:01:25.85,0:01:31.06,Default,,0000,0000,0000,,mostly because my parents really did a lot
Dialogue: 0,0:01:31.06,0:01:33.94,Default,,0000,0000,0000,,to make sure I was included.
Dialogue: 0,0:01:33.94,0:01:37.25,Default,,0000,0000,0000,,I can remember being in boy scouts
Dialogue: 0,0:01:37.25,0:01:39.16,Default,,0000,0000,0000,,and cub scouts when I was a kid
Dialogue: 0,0:01:39.16,0:01:42.61,Default,,0000,0000,0000,,and my father, really doing a lot with me
Dialogue: 0,0:01:42.61,0:01:47.68,Default,,0000,0000,0000,,to ensure my inclusion of my disability
Dialogue: 0,0:01:48.51,0:01:50.70,Default,,0000,0000,0000,,You know going on camping trips with me
Dialogue: 0,0:01:50.70,0:01:53.49,Default,,0000,0000,0000,,and sorts of acting as a \Npersonal attendant
Dialogue: 0,0:01:53.49,0:01:56.50,Default,,0000,0000,0000,,kind of thing to make sure that I was able
Dialogue: 0,0:01:56.50,0:01:57.73,Default,,0000,0000,0000,,to go and participate
Dialogue: 0,0:01:57.73,0:02:00.32,Default,,0000,0000,0000,,and that sort of thing
Dialogue: 0,0:02:00.55,0:02:03.97,Default,,0000,0000,0000,,And so the first real experience
Dialogue: 0,0:02:03.97,0:02:06.02,Default,,0000,0000,0000,,of exclusion that I can remember
Dialogue: 0,0:02:06.02,0:02:07.80,Default,,0000,0000,0000,,happened when it was time
Dialogue: 0,0:02:07.80,0:02:09.35,Default,,0000,0000,0000,,to go to high school.
Dialogue: 0,0:02:09.35,0:02:10.99,Default,,0000,0000,0000,,I had gone to public schools
Dialogue: 0,0:02:10.99,0:02:13.81,Default,,0000,0000,0000,,in my town up until the 8th grade
Dialogue: 0,0:02:13.81,0:02:17.23,Default,,0000,0000,0000,,and then when it came to high school,
Dialogue: 0,0:02:17.23,0:02:21.23,Default,,0000,0000,0000,,I was supposed to do the same
Dialogue: 0,0:02:21.23,0:02:25.13,Default,,0000,0000,0000,,private religiously sort of oriented
Dialogue: 0,0:02:25.13,0:02:27.84,Default,,0000,0000,0000,,school that my older siblings when to
Dialogue: 0,0:02:27.84,0:02:30.30,Default,,0000,0000,0000,,and I took the entrance exam and even got
Dialogue: 0,0:02:30.30,0:02:33.17,Default,,0000,0000,0000,,a small scholarship to go and everything
Dialogue: 0,0:02:33.17,0:02:36.15,Default,,0000,0000,0000,,but it didn't have an elevator,
Dialogue: 0,0:02:36.15,0:02:39.85,Default,,0000,0000,0000,,and so I used a motorized scooter
Dialogue: 0,0:02:39.85,0:02:42.61,Default,,0000,0000,0000,,to get around, and it was
Dialogue: 0,0:02:42.61,0:02:44.26,Default,,0000,0000,0000,,going to be impossible for me to
Dialogue: 0,0:02:44.26,0:02:47.78,Default,,0000,0000,0000,,attend that school, because there was no
Dialogue: 0,0:02:47.78,0:02:49.81,Default,,0000,0000,0000,,elevator. Now this was actually
Dialogue: 0,0:02:49.81,0:02:51.96,Default,,0000,0000,0000,,after the passage of the ADA,
Dialogue: 0,0:02:52.67,0:02:55.45,Default,,0000,0000,0000,,but because it was
Dialogue: 0,0:02:55.45,0:02:58.29,Default,,0000,0000,0000,,a religiously oriented school,
Dialogue: 0,0:02:58.29,0:03:00.06,Default,,0000,0000,0000,,it was exempt from the requirements
Dialogue: 0,0:03:00.06,0:03:01.29,Default,,0000,0000,0000,,of the ADA.
Dialogue: 0,0:03:01.29,0:03:05.25,Default,,0000,0000,0000,,And so, I didn't have any leverage with
Dialogue: 0,0:03:05.25,0:03:06.70,Default,,0000,0000,0000,,that law.
Dialogue: 0,0:03:06.70,0:03:09.75,Default,,0000,0000,0000,,To be able to get them
Dialogue: 0,0:03:09.75,0:03:11.67,Default,,0000,0000,0000,,to make accommodations for me and so
Dialogue: 0,0:03:11.67,0:03:12.61,Default,,0000,0000,0000,,I ended up going to the public school\Nin my town
Dialogue: 0,0:03:14.55,0:03:16.47,Default,,0000,0000,0000,,which actually, personally, I was \Npretty happy about anyway
Dialogue: 0,0:03:17.47,0:03:19.71,Default,,0000,0000,0000,,because that's where all my \Nfriends were going
Dialogue: 0,0:03:20.05,0:03:24.05,Default,,0000,0000,0000,,But it still sort of clued me in
Dialogue: 0,0:03:24.42,0:03:26.93,Default,,0000,0000,0000,,to the fact
Dialogue: 0,0:03:27.01,0:03:29.35,Default,,0000,0000,0000,,not everything is accessible
Dialogue: 0,0:03:29.57,0:03:32.72,Default,,0000,0000,0000,,not everything is designed for me and that
Dialogue: 0,0:03:32.72,0:03:34.26,Default,,0000,0000,0000,,this was going to be something
Dialogue: 0,0:03:34.26,0:03:35.87,Default,,0000,0000,0000,,I was gonna have to figure out
Dialogue: 0,0:03:35.87,0:03:37.16,Default,,0000,0000,0000,,throughout my life.
Dialogue: 0,0:03:38.24,0:03:43.73,Default,,0000,0000,0000,,As far as remembering the ADA
Dialogue: 0,0:03:43.73,0:03:44.88,Default,,0000,0000,0000,,and sort of its passage
Dialogue: 0,0:03:44.88,0:03:45.99,Default,,0000,0000,0000,,and that sort of thing,
Dialogue: 0,0:03:45.99,0:03:48.47,Default,,0000,0000,0000,,I was pretty young when it was passed
Dialogue: 0,0:03:48.47,0:03:51.25,Default,,0000,0000,0000,,I'm sometimes referred to as a part of the
Dialogue: 0,0:03:51.25,0:03:53.21,Default,,0000,0000,0000,,ADA generation, which means that
Dialogue: 0,0:03:54.72,0:03:57.50,Default,,0000,0000,0000,,I sort of grew up with thr ADA mostly
Dialogue: 0,0:03:58.48,0:03:59.83,Default,,0000,0000,0000,,I was born in 1982
Dialogue: 0,0:04:00.38,0:04:02.99,Default,,0000,0000,0000,,and so I was 8 or 9 years old when the ADA
Dialogue: 0,0:04:02.100,0:04:06.50,Default,,0000,0000,0000,,passed, and so I don't really have
Dialogue: 0,0:04:06.50,0:04:08.51,Default,,0000,0000,0000,,any kind of recollection of, "Aha!"
Dialogue: 0,0:04:08.91,0:04:12.49,Default,,0000,0000,0000,,That's the moment that is passed.
Dialogue: 0,0:04:12.50,0:04:16.17,Default,,0000,0000,0000,,And the recall of where I was at the time
Dialogue: 0,0:04:16.17,0:04:17.23,Default,,0000,0000,0000,,or anything like this,
Dialogue: 0,0:04:17.72,0:04:19.74,Default,,0000,0000,0000,,but I do remember my father explaining
Dialogue: 0,0:04:19.74,0:04:23.84,Default,,0000,0000,0000,,it to me, around the time of my
Dialogue: 0,0:04:24.46,0:04:25.69,Default,,0000,0000,0000,,start of high school.
Dialogue: 0,0:04:26.67,0:04:28.28,Default,,0000,0000,0000,,When I experienced this with that
Dialogue: 0,0:04:28.28,0:04:32.11,Default,,0000,0000,0000,,private catholic school, and you know
Dialogue: 0,0:04:32.47,0:04:34.04,Default,,0000,0000,0000,,having that sort of systemic
Dialogue: 0,0:04:34.80,0:04:39.30,Default,,0000,0000,0000,,discrimination experience and he explained
Dialogue: 0,0:04:39.35,0:04:43.95,Default,,0000,0000,0000,,that public schools, and other kinds of
Dialogue: 0,0:04:43.95,0:04:48.86,Default,,0000,0000,0000,,public places were accessible to me
Dialogue: 0,0:04:48.86,0:04:51.70,Default,,0000,0000,0000,,because of the ADA and that there was
Dialogue: 0,0:04:51.70,0:04:53.92,Default,,0000,0000,0000,,this law that said that things had to be
Dialogue: 0,0:04:54.60,0:04:56.21,Default,,0000,0000,0000,,accessible to people
Dialogue: 0,0:04:56.21,0:04:57.36,Default,,0000,0000,0000,,who use wheelchairs, and
Dialogue: 0,0:04:57.36,0:05:00.22,Default,,0000,0000,0000,,motorized scooter like I did at the time
Dialogue: 0,0:05:00.22,0:05:01.96,Default,,0000,0000,0000,,And so that was my first sort of
Dialogue: 0,0:05:01.96,0:05:04.65,Default,,0000,0000,0000,,awareness of the ADA, as well as my first
Dialogue: 0,0:05:04.65,0:05:07.04,Default,,0000,0000,0000,,awareness of discrimination, which is
Dialogue: 0,0:05:07.79,0:05:08.87,Default,,0000,0000,0000,,kind of cool. I think?
Dialogue: 0,0:05:08.87,0:05:11.54,Default,,0000,0000,0000,,Because it was neat to have
Dialogue: 0,0:05:11.54,0:05:13.57,Default,,0000,0000,0000,,that experience of, "Okay, well
Dialogue: 0,0:05:13.57,0:05:16.55,Default,,0000,0000,0000,,this is something that's \Ngoing to be a challenge for you,
Dialogue: 0,0:05:16.91,0:05:20.13,Default,,0000,0000,0000,,and here's how you're protected, \Nand here's how you can do something
Dialogue: 0,0:05:20.13,0:05:23.44,Default,,0000,0000,0000,,about it." \NAnd so in a way, it was sort of,
Dialogue: 0,0:05:24.13,0:05:26.14,Default,,0000,0000,0000,,my awakening into advocacy as well.
Dialogue: 0,0:05:30.48,0:05:35.08,Default,,0000,0000,0000,,Now, as far as the difference that the \NADA has made in my life,
Dialogue: 0,0:05:36.12,0:05:45.32,Default,,0000,0000,0000,,or the life of others, \NI think that it's been, of course
Dialogue: 0,0:05:45.58,0:05:52.06,Default,,0000,0000,0000,,an incredibly important law that has\Nopened up all sorts of oportunities
Dialogue: 0,0:05:52.21,0:05:58.28,Default,,0000,0000,0000,,to people, everything from public\Ntransportation, to be able to move around
Dialogue: 0,0:05:58.28,0:06:06.52,Default,,0000,0000,0000,,your community, the homestead decision \Nis based on ADA, which says that people
Dialogue: 0,0:06:06.52,0:06:10.44,Default,,0000,0000,0000,,need to be--when they need any kind of\Nlong time care,
Dialogue: 0,0:06:10.44,0:06:14.09,Default,,0000,0000,0000,,they need to be served in the least\Nrestrictive environment, meaning that
Dialogue: 0,0:06:14.09,0:06:18.50,Default,,0000,0000,0000,,you can't just institutionalize or\Nwarehouse somebody because it's more
Dialogue: 0,0:06:18.50,0:06:24.32,Default,,0000,0000,0000,,convenient for you, you need to make sure\Nthat they're able to live in the community
Dialogue: 0,0:06:24.32,0:06:28.52,Default,,0000,0000,0000,,or somewhere that is going to be best\Nfor them.
Dialogue: 0,0:06:31.58,0:06:39.14,Default,,0000,0000,0000,,What else did the ADA do? Just\Nthe ability to you know, get an education,
Dialogue: 0,0:06:39.46,0:06:45.18,Default,,0000,0000,0000,,the ability to get a job, all of these\Nthings, for me and for others,
Dialogue: 0,0:06:46.05,0:06:51.44,Default,,0000,0000,0000,,were sort of caused by the ADA and I can't\Nreally imagine what it was like
Dialogue: 0,0:06:52.50,0:06:54.37,Default,,0000,0000,0000,,prior to the ADA, honestly.
Dialogue: 0,0:06:54.37,0:06:58.64,Default,,0000,0000,0000,,I mean, I can imagine it I guess, but\NI'm sure glad that I didn't have to
Dialogue: 0,0:06:58.64,0:06:59.51,Default,,0000,0000,0000,,experience it.
Dialogue: 0,0:07:00.18,0:07:07.99,Default,,0000,0000,0000,,The ADA makes a difference in a wide range\Nof personal experiences
Dialogue: 0,0:07:08.05,0:07:14.76,Default,,0000,0000,0000,,and also a wide range of sort of\Ndisability politics issues. Right?
Dialogue: 0,0:07:15.50,0:07:27.05,Default,,0000,0000,0000,,So, my personal experience that I think\Nmost recently has been impacted by the ADA
Dialogue: 0,0:07:28.19,0:07:38.09,Default,,0000,0000,0000,,has been just my ability to live an\Nindependent life with my two kids.
Dialogue: 0,0:07:38.92,0:07:44.43,Default,,0000,0000,0000,,I think prior to the ADA, it would've\Nbeen much harder to do that.
Dialogue: 0,0:07:45.12,0:07:51.84,Default,,0000,0000,0000,,You know raising kids means that I have to\Ngo into lots of different public spaces
Dialogue: 0,0:07:52.10,0:07:58.35,Default,,0000,0000,0000,,and do different things that I might not\Nhave been 'required' to do, if you will,
Dialogue: 0,0:07:59.06,0:08:02.50,Default,,0000,0000,0000,,professionally, or just sort of\Nin everyday life, if I didn't have them.
Dialogue: 0,0:08:02.50,0:08:07.52,Default,,0000,0000,0000,,So going to the zoo, or going to the\Ngrocery store, for that last minute item
Dialogue: 0,0:08:07.52,0:08:16.32,Default,,0000,0000,0000,,or you know, just whatever it might be,\NI think that, you know--
Dialogue: 0,0:08:16.73,0:08:20.12,Default,,0000,0000,0000,,opening up the daycare centers, and so on\Nand so forth.
Dialogue: 0,0:08:20.12,0:08:24.12,Default,,0000,0000,0000,,The ADA sort of opened all of that up to\Nme, as a wheelchair user
Dialogue: 0,0:08:24.14,0:08:31.47,Default,,0000,0000,0000,,and so, that's where it's made a big\Npersonal impact in my life recently.
Dialogue: 0,0:08:33.41,0:08:39.97,Default,,0000,0000,0000,,Now, I think that the one thing that\NI can sort of speak to, professionally,
Dialogue: 0,0:08:39.97,0:08:49.71,Default,,0000,0000,0000,,about the ADA and its impact or\Nlack of impact is probably, two-fold:
Dialogue: 0,0:08:49.71,0:09:00.42,Default,,0000,0000,0000,,One, is the ways in which my privilege\Nas a physically disabled--
Dialogue: 0,0:09:01.16,0:09:04.39,Default,,0000,0000,0000,,there's a disability hierarchy of course,\Nand so physical disability
Dialogue: 0,0:09:04.39,0:09:10.72,Default,,0000,0000,0000,,is usually at the top of that hierarchy,\Nwith psychiatric disabilities
Dialogue: 0,0:09:10.72,0:09:13.10,Default,,0000,0000,0000,,and intellectual developmental\Ndisabilities,
Dialogue: 0,0:09:13.10,0:09:15.06,Default,,0000,0000,0000,,are sort of lower down on the hierarchy.
Dialogue: 0,0:09:15.61,0:09:22.43,Default,,0000,0000,0000,,And so, as a physically disabled,\Ncisgender, heterosexual white guy,
Dialogue: 0,0:09:22.99,0:09:27.83,Default,,0000,0000,0000,,I've benefited a lot more from the ADA\Nthan lots of other people
Dialogue: 0,0:09:29.36,0:09:32.23,Default,,0000,0000,0000,,that don't have those kinds of privileges.
Dialogue: 0,0:09:33.42,0:09:40.24,Default,,0000,0000,0000,,I think for instance about how the ADA\Nis designed, really
Dialogue: 0,0:09:40.25,0:09:43.82,Default,,0000,0000,0000,,to promote what you'd think of\Nas equality of opportunity,
Dialogue: 0,0:09:45.12,0:09:50.65,Default,,0000,0000,0000,,meaning that everybody has an equal\Nopportunity to compete within sort of the
Dialogue: 0,0:09:51.06,0:10:01.73,Default,,0000,0000,0000,,economic life of the United States, and\Nso, it allows you to enter into the
Dialogue: 0,0:10:01.73,0:10:05.24,Default,,0000,0000,0000,,workforce and enter into the educational\Nsystem and so on and so forth
Dialogue: 0,0:10:05.24,0:10:06.35,Default,,0000,0000,0000,,then compete.
Dialogue: 0,0:10:06.35,0:10:12.38,Default,,0000,0000,0000,,But what it doesn't do is it doesn't\Naddress any of the other advantages
Dialogue: 0,0:10:12.38,0:10:21.12,Default,,0000,0000,0000,,or disadvantages that intersect with\Nableism. So that's sort of something
Dialogue: 0,0:10:21.12,0:10:25.12,Default,,0000,0000,0000,,that is I think, a real problem, with\Nthe ADA.
Dialogue: 0,0:10:25.92,0:10:29.92,Default,,0000,0000,0000,,I'm a well-educated person, I have a\Nmaster's degree and a Ph.D.
Dialogue: 0,0:10:31.76,0:10:38.87,Default,,0000,0000,0000,,and that, I don't think would've been\Navailable to me as easily as it was
Dialogue: 0,0:10:39.62,0:10:43.62,Default,,0000,0000,0000,,if I didn't have these other privileges\Nthat I do have,
Dialogue: 0,0:10:44.34,0:10:48.12,Default,,0000,0000,0000,,that the ADA doesn't do anything\Nto address, it just sort of treats
Dialogue: 0,0:10:48.25,0:10:52.70,Default,,0000,0000,0000,,all disabled people as if they were\Nthe same, and as if the only thing
Dialogue: 0,0:10:52.70,0:10:56.70,Default,,0000,0000,0000,,they have to deal with is structural\Nableism, and that's just not true, right?
Dialogue: 0,0:10:58.33,0:11:06.70,Default,,0000,0000,0000,,I think another thing about disability\Nthat the ADA doesn't address
Dialogue: 0,0:11:08.12,0:11:19.09,Default,,0000,0000,0000,,is economics, in that, I think that\Ndespite the ability to compete,
Dialogue: 0,0:11:20.29,0:11:27.31,Default,,0000,0000,0000,,a lot of disabled people still live in\Nextreme poverty, because of other
Dialogue: 0,0:11:27.31,0:11:30.75,Default,,0000,0000,0000,,things that make it impossible for them\Nto compete,
Dialogue: 0,0:11:30.75,0:11:32.67,Default,,0000,0000,0000,,other than just their disability.
Dialogue: 0,0:11:34.54,0:11:43.09,Default,,0000,0000,0000,,And so, the real sad part to me about that\Nis you look at other systems
Dialogue: 0,0:11:43.09,0:11:47.09,Default,,0000,0000,0000,,that are designed to help disabled people\Nget out of poverty,
Dialogue: 0,0:11:47.09,0:11:56.39,Default,,0000,0000,0000,,and even they don't recognize the way that\Nprivilege operates in these contexts.
Dialogue: 0,0:11:56.60,0:12:01.37,Default,,0000,0000,0000,,So, for instance,\Nthe vocational rehab system.
Dialogue: 0,0:12:02.04,0:12:06.04,Default,,0000,0000,0000,,I've benefited greatly from the vocational\Nrehab system so I don't want to just
Dialogue: 0,0:12:06.22,0:12:08.18,Default,,0000,0000,0000,,sit here and talk smack on it, right?
Dialogue: 0,0:12:09.40,0:12:15.88,Default,,0000,0000,0000,,The vocational rehab system has helped me\Nget a van that I could drive,
Dialogue: 0,0:12:16.92,0:12:18.71,Default,,0000,0000,0000,,so I could get back and forth from
Dialogue: 0,0:12:21.02,0:12:22.02,Default,,0000,0000,0000,,my place of employment, from school,\Nwhich was huge, right?
Dialogue: 0,0:12:24.34,0:12:28.77,Default,,0000,0000,0000,,But the only reason why I had access\Nto that van was:
Dialogue: 0,0:12:28.77,0:12:34.21,Default,,0000,0000,0000,,A. Because I could afford the van itself,\Nwhich not a lot of disabled people can do
Dialogue: 0,0:12:34.22,0:12:37.91,Default,,0000,0000,0000,,especially if they aren't\Nworking yet and
Dialogue: 0,0:12:37.91,0:12:43.56,Default,,0000,0000,0000,,B. Because the VOC rehab counselor\Nthought
Dialogue: 0,0:12:43.56,0:12:45.96,Default,,0000,0000,0000,,that I was worth the investment right?
Dialogue: 0,0:12:46.59,0:12:55.16,Default,,0000,0000,0000,,Someone who didn't have the advantages\Nthat I had, as far as the kind of
Dialogue: 0,0:12:55.16,0:13:04.90,Default,,0000,0000,0000,,disability that I have, my family's\Nresources and my skin color and gender and
Dialogue: 0,0:13:04.90,0:13:09.83,Default,,0000,0000,0000,,all those things, it's very likely that\Nrehab counselor would've said,
Dialogue: 0,0:13:09.83,0:13:11.52,Default,,0000,0000,0000,,"You cant take the bus," right?
Dialogue: 0,0:13:12.06,0:13:14.90,Default,,0000,0000,0000,,"We're not going to invest all of\Nthis money into helping
Dialogue: 0,0:13:14.90,0:13:17.18,Default,,0000,0000,0000,,you learn how to drive."
Dialogue: 0,0:13:17.48,0:13:21.12,Default,,0000,0000,0000,,Because they wouldn't have believed that\Nthey would get this return on their
Dialogue: 0,0:13:21.12,0:13:26.40,Default,,0000,0000,0000,,investment that the person would be able\Nto get a well paying job,
Dialogue: 0,0:13:26.95,0:13:30.95,Default,,0000,0000,0000,,and so on and so forth,\Nand so, I think that that's also
Dialogue: 0,0:13:30.99,0:13:36.18,Default,,0000,0000,0000,,a big issue that the ADA doesn't address,\Nis this kind of intersectionality
Dialogue: 0,0:13:36.18,0:13:43.36,Default,,0000,0000,0000,,that gives some disabled people\Nadvantages within even the system
Dialogue: 0,0:13:44.48,0:13:50.72,Default,,0000,0000,0000,,that is designed to help them, and other\Npeople, of course, disadvantages, which is
Dialogue: 0,0:13:50.74,0:13:52.14,Default,,0000,0000,0000,,a real issue.
Dialogue: 0,0:13:54.73,0:14:01.62,Default,,0000,0000,0000,,Now, as far as my area of expertise,\NBioethics, there's definitely been some
Dialogue: 0,0:14:01.62,0:14:06.27,Default,,0000,0000,0000,,ways in which the ADA has helped greatly,\Nand other ways
Dialogue: 0,0:14:06.27,0:14:10.27,Default,,0000,0000,0000,,in which it hasn't really done much.
Dialogue: 0,0:14:11.10,0:14:15.10,Default,,0000,0000,0000,,So I'll start with the positivity, right?\NWe'll start with the good news.
Dialogue: 0,0:14:17.06,0:14:21.06,Default,,0000,0000,0000,,One way in which I think, I can
Dialogue: 0,0:14:21.09,0:14:24.07,Default,,0000,0000,0000,,point to in a very concrete way in which
Dialogue: 0,0:14:24.07,0:14:26.68,Default,,0000,0000,0000,,the ADA has helped is
Dialogue: 0,0:14:26.68,0:14:29.81,Default,,0000,0000,0000,,when it comes to healthcare rationing so,
Dialogue: 0,0:14:31.25,0:14:36.21,Default,,0000,0000,0000,,The issue of healthcare in the United\NStates of course is a very hot button
Dialogue: 0,0:14:36.21,0:14:47.64,Default,,0000,0000,0000,,topic and it's hot because there is sort\Nof perceived lack of resources--
Dialogue: 0,0:14:47.76,0:14:48.64,Default,,0000,0000,0000,,There's more need
Dialogue: 0,0:14:49.00,0:14:51.68,Default,,0000,0000,0000,,than there is supply for healthcare.
Dialogue: 0,0:14:52.02,0:15:00.83,Default,,0000,0000,0000,,And so, when we talk about expanding\Nhealthcare to a larger number of people,
Dialogue: 0,0:15:01.99,0:15:10.35,Default,,0000,0000,0000,,without also expanding the resources that\Nare being devoted to healthcare,
Dialogue: 0,0:15:11.14,0:15:15.14,Default,,0000,0000,0000,,then that's gonna be a real problem,\Nbecause some people aren't going to get
Dialogue: 0,0:15:16.22,0:15:18.33,Default,,0000,0000,0000,,as much as they need, right?
Dialogue: 0,0:15:18.33,0:15:21.60,Default,,0000,0000,0000,,You're going to have to sort of budget it,\Nif you will.
Dialogue: 0,0:15:22.12,0:15:26.96,Default,,0000,0000,0000,,Or in the terms of bioethics,\Nration healthcare.
Dialogue: 0,0:15:28.31,0:15:35.34,Default,,0000,0000,0000,,Now this proved to be an issue because
Dialogue: 0,0:15:37.81,0:15:45.20,Default,,0000,0000,0000,,when it was done on smaller scale,\Nfor instance the state of Oregon,
Dialogue: 0,0:15:46.51,0:15:50.19,Default,,0000,0000,0000,,after the passage of the ADA--\NI'm not sure exactly on the timeline,
Dialogue: 0,0:15:50.19,0:15:58.91,Default,,0000,0000,0000,,I'm not a historian--but the state of\NOregon expanded their publicly provided
Dialogue: 0,0:15:59.35,0:16:06.71,Default,,0000,0000,0000,,healthcare to a larger number of people,\Nand as they did that, they needed to
Dialogue: 0,0:16:07.23,0:16:13.46,Default,,0000,0000,0000,,make sure that they had a way of\Nprioritizing what was covered
Dialogue: 0,0:16:13.46,0:16:14.84,Default,,0000,0000,0000,,and what was not covered.
Dialogue: 0,0:16:14.84,0:16:18.22,Default,,0000,0000,0000,,And so, as they did this,
Dialogue: 0,0:16:19.29,0:16:22.93,Default,,0000,0000,0000,,it became apparent that a lot of\Ndisabled people
Dialogue: 0,0:16:22.93,0:16:25.90,Default,,0000,0000,0000,,were being rationed out of\Nthe healthcare system.
Dialogue: 0,0:16:26.57,0:16:32.19,Default,,0000,0000,0000,,That a lot of things were not being\Ncovered for disabled folks
Dialogue: 0,0:16:33.53,0:16:35.30,Default,,0000,0000,0000,,that should be.
Dialogue: 0,0:16:35.81,0:16:44.11,Default,,0000,0000,0000,,And so, there was a series of lawsuits\Nthat were brought against
Dialogue: 0,0:16:44.11,0:16:50.24,Default,,0000,0000,0000,,the state of Oregon, that basically\Nsaid that, "You couldn't discriminate
Dialogue: 0,0:16:50.24,0:16:56.42,Default,,0000,0000,0000,,against disabled people and not\Nprovide them with healthcare,
Dialogue: 0,0:16:56.66,0:16:58.38,Default,,0000,0000,0000,,based on their disability."
Dialogue: 0,0:16:58.44,0:17:00.83,Default,,0000,0000,0000,,That you couldn't sort of say,
Dialogue: 0,0:17:00.83,0:17:05.92,Default,,0000,0000,0000,,"Well, this person isn't going to get\Nvery much bang for their buck,
Dialogue: 0,0:17:05.92,0:17:09.36,Default,,0000,0000,0000,,they're not gonna end up being healthy\Nanyway, 'cause they're still going
Dialogue: 0,0:17:09.36,0:17:13.36,Default,,0000,0000,0000,,to be disabled, so we're not going to give\Nthem this treatment option."
Dialogue: 0,0:17:13.44,0:17:20.36,Default,,0000,0000,0000,,Right? And so that was a big win\Nwithin bioethics
Dialogue: 0,0:17:20.36,0:17:23.57,Default,,0000,0000,0000,,that was a direct result of the ADA.
Dialogue: 0,0:17:24.56,0:17:29.05,Default,,0000,0000,0000,,More recently,\Nwe've had a similar thing pop up
Dialogue: 0,0:17:30.35,0:17:34.35,Default,,0000,0000,0000,,because of the COVID-19 pandemic.
Dialogue: 0,0:17:35.29,0:17:43.77,Default,,0000,0000,0000,,Specifically, there are what are called\N"Emergency Healthcare Protocols"
Dialogue: 0,0:17:44.10,0:17:53.16,Default,,0000,0000,0000,,that are being developed for hospital\Nsystems and states that anticipate
Dialogue: 0,0:17:53.46,0:18:03.29,Default,,0000,0000,0000,,needing more intensive care unit beds,\Nventilators and so on and so forth,
Dialogue: 0,0:18:03.46,0:18:05.16,Default,,0000,0000,0000,,that aren't actually available.
Dialogue: 0,0:18:05.20,0:18:09.34,Default,,0000,0000,0000,,And so we need some way of figuring out\Nwho gets the ventilator,
Dialogue: 0,0:18:09.37,0:18:11.53,Default,,0000,0000,0000,,who gets the Intensive Care Unit bed,
Dialogue: 0,0:18:12.06,0:18:18.86,Default,,0000,0000,0000,,and so on and so forth,\Nas the pandemic increases and goes o
Dialogue: 0,0:18:19.79,0:18:25.68,Default,,0000,0000,0000,,And so there was some\Nprotocols that were developed
Dialogue: 0,0:18:25.98,0:18:29.05,Default,,0000,0000,0000,,that were very discriminatory\Nagainst disabled people.
Dialogue: 0,0:18:29.78,0:18:36.60,Default,,0000,0000,0000,,There was one in Alabama specifically,\Nthat said that anybody
Dialogue: 0,0:18:36.60,0:18:41.12,Default,,0000,0000,0000,,with an intellectual disability\Nor with dementia was going to be
Dialogue: 0,0:18:41.91,0:18:50.26,Default,,0000,0000,0000,,deprioritized from getting these life-\Nsaving resources if they got COVID-19.
Dialogue: 0,0:18:51.32,0:18:57.72,Default,,0000,0000,0000,,And there was one in Washington state,\Nthat was pretty discriminatory against
Dialogue: 0,0:18:58.54,0:19:07.91,Default,,0000,0000,0000,,disabled folks and said that\Nif you had a disability
Dialogue: 0,0:19:08.35,0:19:15.12,Default,,0000,0000,0000,,that meant that even after treatment\Nyou are still going to be disabled,
Dialogue: 0,0:19:16.32,0:19:22.20,Default,,0000,0000,0000,,that you would be deprioritized from\Ngetting the life-saving, life support
Dialogue: 0,0:19:22.48,0:19:24.20,Default,,0000,0000,0000,,treatment for COVID-19.
Dialogue: 0,0:19:24.36,0:19:28.48,Default,,0000,0000,0000,,So there was a variety of these all over\Nthe United States
Dialogue: 0,0:19:29.93,0:19:36.05,Default,,0000,0000,0000,,that were really problematic and\Nthat explicitly were discriminating
Dialogue: 0,0:19:36.05,0:19:40.41,Default,,0000,0000,0000,,against disabled people when it came to\Ngetting treatment for COVID
Dialogue: 0,0:19:41.52,0:19:49.84,Default,,0000,0000,0000,,and so in response, there were some folks\Nfrom protection and advocacy agencies,
Dialogue: 0,0:19:49.84,0:19:54.27,Default,,0000,0000,0000,,which are sort of these--\NDisability Rights California is one,
Dialogue: 0,0:19:54.96,0:20:00.90,Default,,0000,0000,0000,,and each state has protection and advocacy\Nagencies that are federally funded,
Dialogue: 0,0:20:01.20,0:20:05.76,Default,,0000,0000,0000,,non-profit law firms that protect the\Nrights of disabled people and so they
Dialogue: 0,0:20:05.76,0:20:14.05,Default,,0000,0000,0000,,sued these states and these hospital\Nsystems and got the federal government to
Dialogue: 0,0:20:14.60,0:20:22.58,Default,,0000,0000,0000,,provide guidelines for treatment ration\Nprotocols that basically say
Dialogue: 0,0:20:22.95,0:20:26.02,Default,,0000,0000,0000,,that you can't discriminate against\Ndisabled people in this way.
Dialogue: 0,0:20:26.61,0:20:34.22,Default,,0000,0000,0000,,That the only time that you can withhold\Ntreatment for COVID-19 is if there is
Dialogue: 0,0:20:34.22,0:20:40.41,Default,,0000,0000,0000,,sort of a very clear way in which the\Ndisability means that person would not
Dialogue: 0,0:20:40.41,0:20:45.36,Default,,0000,0000,0000,,benefit from the treatment, that, you know\Nthey have the kind of disability
Dialogue: 0,0:20:45.97,0:20:50.53,Default,,0000,0000,0000,,that would make it very, very unlikely\Nthat they would survive the virus
Dialogue: 0,0:20:50.53,0:20:58.02,Default,,0000,0000,0000,,even with some kind of ventilator or\Nintensive care situation.
Dialogue: 0,0:20:58.85,0:21:03.46,Default,,0000,0000,0000,,And so, that's of course very different\Nbecause something like needing
Dialogue: 0,0:21:03.46,0:21:09.47,Default,,0000,0000,0000,,an assistive device like a wheelchair or\Nneeding help dressing and bathing
Dialogue: 0,0:21:09.71,0:21:17.96,Default,,0000,0000,0000,,or having these things that would've\Nmeant that people would be rationed out
Dialogue: 0,0:21:17.96,0:21:21.49,Default,,0000,0000,0000,,under some of these protocols have\Nnothing to do with whether or not
Dialogue: 0,0:21:28.43,0:21:42.01,Default,,0000,0000,0000,,So of course this is a really good thing\Nthat these protocols were changed because
Dialogue: 0,0:21:43.22,0:21:47.22,Default,,0000,0000,0000,,there were a lot of them that would have\Nrationed people out
Dialogue: 0,0:21:47.31,0:21:51.67,Default,,0000,0000,0000,,for reasons that had nothing to do with\Nwhether or not they'll survive
Dialogue: 0,0:21:51.67,0:21:53.63,Default,,0000,0000,0000,,the virus with treatment, Right?
Dialogue: 0,0:21:53.65,0:21:59.20,Default,,0000,0000,0000,,So whether you use a wheelchair,\Nor need a personal attendant for things
Dialogue: 0,0:21:59.20,0:22:01.34,Default,,0000,0000,0000,,like dressing and bathing, whether or not
Dialogue: 0,0:22:01.34,0:22:04.53,Default,,0000,0000,0000,,you have an intellectual disability
Dialogue: 0,0:22:04.53,0:22:11.44,Default,,0000,0000,0000,,These are reasons that were being used to\Ndeny people treatment for COVID-19 that
Dialogue: 0,0:22:11.44,0:22:16.20,Default,,0000,0000,0000,,have nothing to do with whether or not\Nthey would survive the disease. So,
Dialogue: 0,0:22:17.33,0:22:24.38,Default,,0000,0000,0000,,These advocacy efforts that were based on\Nthe American with Disabilities Ac
Dialogue: 0,0:22:25.68,0:22:31.73,Default,,0000,0000,0000,,sort of made that illegal to do, which\Nis of course a really important thing it's
Dialogue: 0,0:22:31.73,0:22:34.59,Default,,0000,0000,0000,,literally saved peoples lives presumably.
Dialogue: 0,0:22:36.81,0:22:45.99,Default,,0000,0000,0000,,So thats the good news as far as my field\Nof work and the ways in which ADA has
Dialogue: 0,0:22:46.06,0:22:53.34,Default,,0000,0000,0000,,made an impact, but of course that isn't\Nthe only story.
Dialogue: 0,0:22:53.76,0:22:56.17,Default,,0000,0000,0000,,There are lots of ways in which
Dialogue: 0,0:22:57.54,0:23:06.92,Default,,0000,0000,0000,,bioethics can and has been discriminatory\Ntowards disabled people in ways that isn't
Dialogue: 0,0:23:07.54,0:23:12.55,Default,,0000,0000,0000,,addressed by the ADA and that can't really\Nbe addressed by the ADA because of the way
Dialogue: 0,0:23:13.53,0:23:16.60,Default,,0000,0000,0000,,it's written and the kinds of problems\Nit was designed to solve.
Dialogue: 0,0:23:17.47,0:23:27.39,Default,,0000,0000,0000,,For instance, there is a lot of\Ncontroversy over the development of
Dialogue: 0,0:23:28.54,0:23:30.83,Default,,0000,0000,0000,,different reproductive technologies
Dialogue: 0,0:23:31.50,0:23:37.74,Default,,0000,0000,0000,,that are designed to\Nprevent the birth of disabled children.
Dialogue: 0,0:23:38.66,0:23:43.97,Default,,0000,0000,0000,,With intellectual disabilities,\Nwith down syndrome,
Dialogue: 0,0:23:44.22,0:23:47.34,Default,,0000,0000,0000,,with disabilities like mine, dwarfism.
Dialogue: 0,0:23:48.28,0:23:54.74,Default,,0000,0000,0000,,with disabilities like certain kinds of\Ngenetically linked deafness, and so on.
Dialogue: 0,0:23:55.49,0:24:00.00,Default,,0000,0000,0000,,And so we have an entire industry aimed
Dialogue: 0,0:24:00.08,0:24:04.08,Default,,0000,0000,0000,,at genetic testing for these kind of
Dialogue: 0,0:24:04.37,0:24:08.90,Default,,0000,0000,0000,,disabilities and the prevention of the
Dialogue: 0,0:24:08.90,0:24:10.19,Default,,0000,0000,0000,,birth of children
Dialogue: 0,0:24:10.19,0:24:11.78,Default,,0000,0000,0000,,with these disabilities with
Dialogue: 0,0:24:12.55,0:24:16.55,Default,,0000,0000,0000,,selective abortion or, now,\Nselective implantation,
Dialogue: 0,0:24:16.94,0:24:20.17,Default,,0000,0000,0000,,which is when you test embryos
Dialogue: 0,0:24:20.17,0:24:21.86,Default,,0000,0000,0000,,and then pick the one that you want
Dialogue: 0,0:24:22.38,0:24:24.48,Default,,0000,0000,0000,,to give birth to.
Dialogue: 0,0:24:25.03,0:24:27.04,Default,,0000,0000,0000,,And then coming down the pipeline
Dialogue: 0,0:24:27.04,0:24:31.25,Default,,0000,0000,0000,,is CRISPR, which will be a technology
Dialogue: 0,0:24:31.87,0:24:35.42,Default,,0000,0000,0000,,that doesn't select a particular embryo
Dialogue: 0,0:24:35.42,0:24:37.75,Default,,0000,0000,0000,,but rather modifies the embryo itself.
Dialogue: 0,0:24:39.21,0:24:42.05,Default,,0000,0000,0000,,It sort of-- what's sometimes referred to
Dialogue: 0,0:24:42.05,0:24:44.24,Default,,0000,0000,0000,,as gene editing or genetic engineering.
Dialogue: 0,0:24:45.20,0:24:47.58,Default,,0000,0000,0000,,And that isn't a reality yet, but
Dialogue: 0,0:24:48.14,0:24:50.59,Default,,0000,0000,0000,,scientists are certainly working toward
Dialogue: 0,0:24:51.68,0:24:53.88,Default,,0000,0000,0000,,the use of that technology to prevent
Dialogue: 0,0:24:53.88,0:24:54.85,Default,,0000,0000,0000,,disability.
Dialogue: 0,0:24:55.14,0:24:59.60,Default,,0000,0000,0000,,Now it's something that of course makes
Dialogue: 0,0:24:59.60,0:25:01.52,Default,,0000,0000,0000,,a lot of people with these disabilities
Dialogue: 0,0:25:02.05,0:25:05.35,Default,,0000,0000,0000,,very uncomfortable because of
Dialogue: 0,0:25:05.35,0:25:09.07,Default,,0000,0000,0000,,the message that it might send, right?
Dialogue: 0,0:25:09.07,0:25:11.28,Default,,0000,0000,0000,,It might send the message that,
Dialogue: 0,0:25:11.28,0:25:13.57,Default,,0000,0000,0000,,"People like you aren't wanted
Dialogue: 0,0:25:13.57,0:25:15.50,Default,,0000,0000,0000,,in the world." Right? "we don't
Dialogue: 0,0:25:15.50,0:25:16.80,Default,,0000,0000,0000,,need more like you."
Dialogue: 0,0:25:17.69,0:25:22.56,Default,,0000,0000,0000,,And so, it is sorta of based on, largely,
Dialogue: 0,0:25:23.72,0:25:27.72,Default,,0000,0000,0000,,stigma around disability, around ideas
Dialogue: 0,0:25:27.78,0:25:30.31,Default,,0000,0000,0000,,about quality of life with disabled people
Dialogue: 0,0:25:30.37,0:25:32.42,Default,,0000,0000,0000,,that, "if you have a disability, you must
Dialogue: 0,0:25:32.42,0:25:35.15,Default,,0000,0000,0000,,be miserable, and so we must do everything
Dialogue: 0,0:25:35.15,0:25:37.69,Default,,0000,0000,0000,,we can to prevent more like you from
Dialogue: 0,0:25:37.69,0:25:40.19,Default,,0000,0000,0000,,coming into existence," and so on and so
Dialogue: 0,0:25:40.19,0:25:40.90,Default,,0000,0000,0000,,forth.
Dialogue: 0,0:25:41.75,0:25:45.75,Default,,0000,0000,0000,,Now, this is a real problem because,
Dialogue: 0,0:25:45.98,0:25:53.12,Default,,0000,0000,0000,,of course, it comes into conflict with
Dialogue: 0,0:25:53.26,0:25:55.50,Default,,0000,0000,0000,,values a lot of people hold around
Dialogue: 0,0:25:55.50,0:25:58.50,Default,,0000,0000,0000,,reproductive liberty, around women being
Dialogue: 0,0:25:58.50,0:26:00.52,Default,,0000,0000,0000,,able to make choices for themselves
Dialogue: 0,0:26:00.52,0:26:03.65,Default,,0000,0000,0000,,about their own bodies, and about their
Dialogue: 0,0:26:03.65,0:26:06.92,Default,,0000,0000,0000,,own lives, and so on and so forth.
Dialogue: 0,0:26:07.76,0:26:13.25,Default,,0000,0000,0000,,And so, this has created a tension between
Dialogue: 0,0:26:14.40,0:26:18.99,Default,,0000,0000,0000,,disability bioethics and other kinds of
Dialogue: 0,0:26:19.62,0:26:23.62,Default,,0000,0000,0000,,progressive groups that are wanting to
Dialogue: 0,0:26:24.77,0:26:28.34,Default,,0000,0000,0000,,promote freedom and justice for everybody.
Dialogue: 0,0:26:28.55,0:26:31.05,Default,,0000,0000,0000,,And so the ADA, you know, isn't designed
Dialogue: 0,0:26:31.05,0:26:32.82,Default,,0000,0000,0000,,to handle something like this because
Dialogue: 0,0:26:32.82,0:26:36.02,Default,,0000,0000,0000,,it's not about overt discrimination
Dialogue: 0,0:26:36.02,0:26:41.90,Default,,0000,0000,0000,,against people, but rather it's about
Dialogue: 0,0:26:41.90,0:26:45.90,Default,,0000,0000,0000,,attitudes about beliefs, about disability,
Dialogue: 0,0:26:45.90,0:26:47.81,Default,,0000,0000,0000,,that drive personal decisions.
Dialogue: 0,0:26:49.04,0:26:53.26,Default,,0000,0000,0000,,And so it's really really hard to address
Dialogue: 0,0:26:53.26,0:26:57.87,Default,,0000,0000,0000,,this as a policy problem because you know
Dialogue: 0,0:26:57.88,0:27:03.58,Default,,0000,0000,0000,,people aren't going to be very keen on
Dialogue: 0,0:27:03.58,0:27:06.98,Default,,0000,0000,0000,,restricting the kind of decisions women
Dialogue: 0,0:27:06.98,0:27:10.98,Default,,0000,0000,0000,,and families can make about reproduction.
Dialogue: 0,0:27:11.87,0:27:14.43,Default,,0000,0000,0000,,But at the same time, we want to promote
Dialogue: 0,0:27:14.94,0:27:17.89,Default,,0000,0000,0000,,good beliefs, and true beliefs, and good
Dialogue: 0,0:27:17.89,0:27:20.62,Default,,0000,0000,0000,,attitudes about disability, and the ways
Dialogue: 0,0:27:20.62,0:27:22.60,Default,,0000,0000,0000,,in which it contributes to the world,
Dialogue: 0,0:27:22.73,0:27:25.04,Default,,0000,0000,0000,,in the ways in which disabilities form
Dialogue: 0,0:27:25.04,0:27:26.75,Default,,0000,0000,0000,,a diversity that's important that we
Dialogue: 0,0:27:26.75,0:27:28.33,Default,,0000,0000,0000,,don't want to eliminate.
Dialogue: 0,0:27:28.46,0:27:34.94,Default,,0000,0000,0000,,And so that's, I think, a task for folks
Dialogue: 0,0:27:34.94,0:27:37.45,Default,,0000,0000,0000,,like myself in bioethics that are writing
Dialogue: 0,0:27:37.45,0:27:39.97,Default,,0000,0000,0000,,about these issues, that are trying to
Dialogue: 0,0:27:40.01,0:27:45.45,Default,,0000,0000,0000,,make arguments that are able to walk this
Dialogue: 0,0:27:45.45,0:27:48.56,Default,,0000,0000,0000,,very thin line between saying,
Dialogue: 0,0:27:48.56,0:27:52.74,Default,,0000,0000,0000,,"Okay, you know disability is the kind of
Dialogue: 0,0:27:52.74,0:27:58.97,Default,,0000,0000,0000,,thing that is not a horrible life sentence
Dialogue: 0,0:27:58.97,0:28:02.00,Default,,0000,0000,0000,,of misery," and so we don't want to make
Dialogue: 0,0:28:02.00,0:28:06.11,Default,,0000,0000,0000,,that assumption and we don't want to base
Dialogue: 0,0:28:07.12,0:28:09.60,Default,,0000,0000,0000,,the technologies that we develop or the
Dialogue: 0,0:28:09.60,0:28:12.17,Default,,0000,0000,0000,,decisions that we make on that assumption.
Dialogue: 0,0:28:12.40,0:28:15.22,Default,,0000,0000,0000,,But at the same time, we don't want to
Dialogue: 0,0:28:15.22,0:28:17.65,Default,,0000,0000,0000,,tell people what they can and can't do
Dialogue: 0,0:28:17.65,0:28:18.90,Default,,0000,0000,0000,,with their bodies.
Dialogue: 0,0:28:19.50,0:28:23.50,Default,,0000,0000,0000,,I think that, if I were to pick one thing
Dialogue: 0,0:28:23.59,0:28:28.35,Default,,0000,0000,0000,,to change, to try to give people with
Dialogue: 0,0:28:28.35,0:28:32.35,Default,,0000,0000,0000,,disabilities more access, and to remove
Dialogue: 0,0:28:32.35,0:28:36.35,Default,,0000,0000,0000,,barriers to a life of flourishing
Dialogue: 0,0:28:36.35,0:28:38.93,Default,,0000,0000,0000,,and opportunity for disabled people.
Dialogue: 0,0:28:40.07,0:28:50.47,Default,,0000,0000,0000,,I think I would go back to my birth story,
Dialogue: 0,0:28:50.47,0:28:52.20,Default,,0000,0000,0000,,my origin story if you will.
Dialogue: 0,0:28:53.50,0:28:58.79,Default,,0000,0000,0000,,When I was born, the doctor that delivered
Dialogue: 0,0:28:58.79,0:29:04.58,Default,,0000,0000,0000,,me looked at my body and he had never
Dialogue: 0,0:29:04.58,0:29:07.33,Default,,0000,0000,0000,,seen somebody with my kind of Dwarfism
Dialogue: 0,0:29:07.33,0:29:09.43,Default,,0000,0000,0000,,before, and didn't know much about it,
Dialogue: 0,0:29:09.62,0:29:11.22,Default,,0000,0000,0000,,and he told my parents,
Dialogue: 0,0:29:13.15,0:29:16.32,Default,,0000,0000,0000,,"he's not gonna do much,\Nhe's not going to be
Dialogue: 0,0:29:16.32,0:29:18.09,Default,,0000,0000,0000,,able to walk, he's not gonna be able
Dialogue: 0,0:29:18.09,0:29:20.02,Default,,0000,0000,0000,,able to walk, he's not gonna be able
Dialogue: 0,0:29:20.02,0:29:22.02,Default,,0000,0000,0000,,school," and so on and so forth.
Dialogue: 0,0:29:22.70,0:29:25.13,Default,,0000,0000,0000,,"You should place him in a
Dialogue: 0,0:29:25.22,0:29:27.14,Default,,0000,0000,0000,,state institution and
Dialogue: 0,0:29:27.82,0:29:30.05,Default,,0000,0000,0000,,go about your lives, forget about him."
Dialogue: 0,0:29:31.09,0:29:33.30,Default,,0000,0000,0000,,And they didn't do that, obviously.
Dialogue: 0,0:29:33.30,0:29:34.61,Default,,0000,0000,0000,,They chose not to do that.
Dialogue: 0,0:29:34.61,0:29:36.51,Default,,0000,0000,0000,,They took me home, they raised me
Dialogue: 0,0:29:36.64,0:29:39.48,Default,,0000,0000,0000,,like their kid because I was their kid.
Dialogue: 0,0:29:40.48,0:29:46.38,Default,,0000,0000,0000,,And so I think a lot about how different
Dialogue: 0,0:29:46.67,0:29:49.52,Default,,0000,0000,0000,,my life would be if I had been
Dialogue: 0,0:29:49.52,0:29:52.04,Default,,0000,0000,0000,,institutionalized from birth, as that
Dialogue: 0,0:29:52.04,0:29:53.65,Default,,0000,0000,0000,,doctor recommended.
Dialogue: 0,0:29:55.22,0:29:58.06,Default,,0000,0000,0000,,And then I think about how these
Dialogue: 0,0:29:58.06,0:29:59.81,Default,,0000,0000,0000,,And then I think about how these
Dialogue: 0,0:30:00.95,0:30:05.57,Default,,0000,0000,0000,,That when I was-- before I entered
Dialogue: 0,0:30:05.57,0:30:09.57,Default,,0000,0000,0000,,academia full-time, I worked as an
Dialogue: 0,0:30:09.57,0:30:13.57,Default,,0000,0000,0000,,advocate for a protection and advocacy
Dialogue: 0,0:30:13.57,0:30:16.74,Default,,0000,0000,0000,,agency in the state of Texas, where they
Dialogue: 0,0:30:16.74,0:30:18.27,Default,,0000,0000,0000,,have what are called,
Dialogue: 0,0:30:19.83,0:30:22.71,Default,,0000,0000,0000,,"state supported living centers,"
Dialogue: 0,0:30:23.18,0:30:26.20,Default,,0000,0000,0000,,which are-- sort of a euphemism for
Dialogue: 0,0:30:26.20,0:30:28.48,Default,,0000,0000,0000,,state institutions where they warehouse
Dialogue: 0,0:30:28.48,0:30:31.36,Default,,0000,0000,0000,,people with intellectual disabilities and
Dialogue: 0,0:30:31.36,0:30:33.80,Default,,0000,0000,0000,,psychiatric disabilities of various kinds.
Dialogue: 0,0:30:35.81,0:30:37.81,Default,,0000,0000,0000,,Basically the kind of place that the
Dialogue: 0,0:30:37.81,0:30:40.10,Default,,0000,0000,0000,,doctor was recommending my parents
Dialogue: 0,0:30:40.10,0:30:43.77,Default,,0000,0000,0000,,to put me. They still exist, almost forty
Dialogue: 0,0:30:43.77,0:30:46.46,Default,,0000,0000,0000,,years later. This is not okay.
Dialogue: 0,0:30:47.99,0:30:50.33,Default,,0000,0000,0000,,And it's not just these kind of places
Dialogue: 0,0:30:50.33,0:30:52.07,Default,,0000,0000,0000,,that are really problematic.
Dialogue: 0,0:30:53.08,0:30:55.05,Default,,0000,0000,0000,,Nursing homes, there's lots of disabled
Dialogue: 0,0:30:55.05,0:30:56.78,Default,,0000,0000,0000,,people in nursing homes.
Dialogue: 0,0:30:56.96,0:30:59.26,Default,,0000,0000,0000,,Even some group home systems
Dialogue: 0,0:30:59.83,0:31:03.83,Default,,0000,0000,0000,,that are corporate, that are designed to
Dialogue: 0,0:31:03.83,0:31:07.63,Default,,0000,0000,0000,,make money, and not to make sure that
Dialogue: 0,0:31:07.63,0:31:11.72,Default,,0000,0000,0000,,the people living there are actually\Nliving
Dialogue: 0,0:31:11.72,0:31:13.42,Default,,0000,0000,0000,,good lives, right?
Dialogue: 0,0:31:14.82,0:31:18.82,Default,,0000,0000,0000,,This is a serious problem when you
Dialogue: 0,0:31:19.54,0:31:23.54,Default,,0000,0000,0000,,take people and you put them in
Dialogue: 0,0:31:23.66,0:31:26.78,Default,,0000,0000,0000,,a situation where they don't have control
Dialogue: 0,0:31:26.78,0:31:30.78,Default,,0000,0000,0000,,over the basic decisions of their life:
Dialogue: 0,0:31:30.86,0:31:33.68,Default,,0000,0000,0000,,what they eat for their meals, when they
Dialogue: 0,0:31:33.68,0:31:35.09,Default,,0000,0000,0000,,wake up, when they go to bed,
Dialogue: 0,0:31:35.09,0:31:37.88,Default,,0000,0000,0000,,how they spend their time, what they wear.
Dialogue: 0,0:31:37.88,0:31:41.88,Default,,0000,0000,0000,,When I was working as an advocate going
Dialogue: 0,0:31:41.88,0:31:43.95,Default,,0000,0000,0000,,in to the state institutions in Texas,
Dialogue: 0,0:31:43.95,0:31:46.55,Default,,0000,0000,0000,,I remember sitting in a meeting where it
Dialogue: 0,0:31:46.55,0:31:53.01,Default,,0000,0000,0000,,was discussed about my clients eating
Dialogue: 0,0:31:53.01,0:31:57.01,Default,,0000,0000,0000,,habits. How apart of his behavioral
Dialogue: 0,0:31:57.01,0:32:02.22,Default,,0000,0000,0000,,support plan was that they had his helper
Dialogue: 0,0:32:03.98,0:32:07.86,Default,,0000,0000,0000,,try to get him to take a sip of water
Dialogue: 0,0:32:07.86,0:32:10.84,Default,,0000,0000,0000,,between every bite of food that he took
Dialogue: 0,0:32:11.82,0:32:14.19,Default,,0000,0000,0000,,during meal time. I thought to myself,
Dialogue: 0,0:32:14.19,0:32:17.14,Default,,0000,0000,0000,,"how absurd!" This is a grown adult
Dialogue: 0,0:32:17.14,0:32:23.58,Default,,0000,0000,0000,,person that they are trying to micromanage
Dialogue: 0,0:32:23.58,0:32:25.97,Default,,0000,0000,0000,,down to the very last detail of his life
Dialogue: 0,0:32:26.50,0:32:29.88,Default,,0000,0000,0000,,and trying to control everything about
Dialogue: 0,0:32:29.88,0:32:33.88,Default,,0000,0000,0000,,what he does. That's horrific I can't
Dialogue: 0,0:32:33.97,0:32:36.56,Default,,0000,0000,0000,,imagine living under that kind of
Dialogue: 0,0:32:36.56,0:32:39.34,Default,,0000,0000,0000,,condition. Where not even being able to
Dialogue: 0,0:32:39.34,0:32:42.26,Default,,0000,0000,0000,,eat my meals in peace without someone
Dialogue: 0,0:32:42.26,0:32:44.18,Default,,0000,0000,0000,,telling me what to do and how to do it.
Dialogue: 0,0:32:44.18,0:32:48.48,Default,,0000,0000,0000,,Right? And so you know I think that this
Dialogue: 0,0:32:48.48,0:32:51.15,Default,,0000,0000,0000,,lack of control over basic decisions of
Dialogue: 0,0:32:51.15,0:32:54.43,Default,,0000,0000,0000,,your life is a real problem for a large
Dialogue: 0,0:32:54.43,0:32:58.36,Default,,0000,0000,0000,,number of disabled people still even you
Dialogue: 0,0:32:58.36,0:33:01.17,Default,,0000,0000,0000,,know 30 years after the passage of the
Dialogue: 0,0:33:01.17,0:33:04.47,Default,,0000,0000,0000,,ADA. So if there is one thing that I
Dialogue: 0,0:33:04.47,0:33:06.64,Default,,0000,0000,0000,,could sort of wave a magic wand and change
Dialogue: 0,0:33:06.64,0:33:09.10,Default,,0000,0000,0000,,it would be that. It would be developing
Dialogue: 0,0:33:09.10,0:33:11.77,Default,,0000,0000,0000,,systems where people are truly supported
Dialogue: 0,0:33:12.54,0:33:16.23,Default,,0000,0000,0000,,to be able to flourish as they are, but
Dialogue: 0,0:33:16.23,0:33:21.29,Default,,0000,0000,0000,,not controlled. Right? Not told what to
Dialogue: 0,0:33:21.29,0:33:23.30,Default,,0000,0000,0000,,do and when to do it every moment of their
Dialogue: 0,0:33:23.30,0:33:25.39,Default,,0000,0000,0000,,lives. Where they can make their own
Dialogue: 0,0:33:25.39,0:33:28.80,Default,,0000,0000,0000,,decisions and have agency over their own
Dialogue: 0,0:33:28.80,0:33:34.66,Default,,0000,0000,0000,,lives. I think that's what is\Nmissing for a
Dialogue: 0,0:33:34.66,0:33:37.35,Default,,0000,0000,0000,,large number of disabled people still even
Dialogue: 0,0:33:37.35,0:33:40.05,Default,,0000,0000,0000,,after the ADA. And that we need to do
Dialogue: 0,0:33:41.05,0:33:44.40,Default,,0000,0000,0000,,something about that. I think that there
Dialogue: 0,0:33:44.40,0:33:46.02,Default,,0000,0000,0000,,is a few things that we can do.
Dialogue: 0,0:33:46.02,0:33:48.23,Default,,0000,0000,0000,,First, educate your self on the issues.
Dialogue: 0,0:33:48.23,0:33:50.66,Default,,0000,0000,0000,,Right? Educate your self on the issues
Dialogue: 0,0:33:50.66,0:33:53.34,Default,,0000,0000,0000,,beyond just how they effect you. Right?
Dialogue: 0,0:33:53.34,0:33:57.34,Default,,0000,0000,0000,,I think that within the disability
Dialogue: 0,0:33:57.34,0:34:01.54,Default,,0000,0000,0000,,movements there is sort of pockets of
Dialogue: 0,0:34:01.54,0:34:03.46,Default,,0000,0000,0000,,different people doing different things.
Dialogue: 0,0:34:03.46,0:34:05.64,Default,,0000,0000,0000,,And that's fine. But, I think we need to
Dialogue: 0,0:34:05.64,0:34:07.92,Default,,0000,0000,0000,,talk to each other more. We need to
Dialogue: 0,0:34:07.92,0:34:13.54,Default,,0000,0000,0000,,realize that disability issues go beyond
Dialogue: 0,0:34:14.11,0:34:17.76,Default,,0000,0000,0000,,our limited experience. Right? So we need
Dialogue: 0,0:34:17.76,0:34:21.76,Default,,0000,0000,0000,,to be aware of the ways in which
Dialogue: 0,0:34:22.10,0:34:24.97,Default,,0000,0000,0000,,disability disadvantages people
Dialogue: 0,0:34:24.97,0:34:27.16,Default,,0000,0000,0000,,differently. That the experience of
Dialogue: 0,0:34:27.16,0:34:29.76,Default,,0000,0000,0000,,disability is not an experience it's many
Dialogue: 0,0:34:29.76,0:34:32.83,Default,,0000,0000,0000,,experiences. And so, we need to listen to
Dialogue: 0,0:34:32.83,0:34:35.17,Default,,0000,0000,0000,,each other and hear from each other about
Dialogue: 0,0:34:35.41,0:34:38.96,Default,,0000,0000,0000,,the ways in which we are suffering and
Dialogue: 0,0:34:38.96,0:34:41.78,Default,,0000,0000,0000,,hurting. Because, of disability
Dialogue: 0,0:34:41.78,0:34:43.52,Default,,0000,0000,0000,,discrimination because it looks very
Dialogue: 0,0:34:43.52,0:34:46.25,Default,,0000,0000,0000,,different between different people. And so
Dialogue: 0,0:34:46.71,0:34:49.47,Default,,0000,0000,0000,,having a richer fuller understanding
Dialogue: 0,0:34:49.80,0:34:53.03,Default,,0000,0000,0000,,having a richer fuller understanding
Dialogue: 0,0:34:53.38,0:34:56.66,Default,,0000,0000,0000,,Then beyond that sort of talking to people
Dialogue: 0,0:34:56.66,0:35:00.66,Default,,0000,0000,0000,,about strategies that they have\Nand learn from
Dialogue: 0,0:35:00.66,0:35:03.97,Default,,0000,0000,0000,,each other about you know maybe some
Dialogue: 0,0:35:03.97,0:35:07.97,Default,,0000,0000,0000,,strategy that works for you know the deaf
Dialogue: 0,0:35:07.98,0:35:11.24,Default,,0000,0000,0000,,community would work really well for the
Dialogue: 0,0:35:11.24,0:35:13.74,Default,,0000,0000,0000,,dwarf community and maybe we\Nhaven't talked
Dialogue: 0,0:35:13.74,0:35:17.74,Default,,0000,0000,0000,,dwarf community and maybe we\Nhaven't talked
Dialogue: 0,0:35:17.74,0:35:19.74,Default,,0000,0000,0000,,political strategies to try to get what
Dialogue: 0,0:35:19.74,0:35:23.37,Default,,0000,0000,0000,,we need in order to live well. And maybe
Dialogue: 0,0:35:23.37,0:35:27.37,Default,,0000,0000,0000,,we should. Right? So, educate ourselves
Dialogue: 0,0:35:27.56,0:35:30.16,Default,,0000,0000,0000,,about the struggle of others you know
Dialogue: 0,0:35:30.16,0:35:32.41,Default,,0000,0000,0000,,because it's important to know and then
Dialogue: 0,0:35:32.41,0:35:35.52,Default,,0000,0000,0000,,share information and share strategies on
Dialogue: 0,0:35:35.68,0:35:39.30,Default,,0000,0000,0000,,how to effectively advocate and come
Dialogue: 0,0:35:39.30,0:35:43.08,Default,,0000,0000,0000,,together and fight together. Right? If you
Dialogue: 0,0:35:43.08,0:35:48.13,Default,,0000,0000,0000,,show up for someone on issue A that they
Dialogue: 0,0:35:48.13,0:35:50.31,Default,,0000,0000,0000,,are having then they're\Nmore likely to show
Dialogue: 0,0:35:50.33,0:35:52.27,Default,,0000,0000,0000,,up for you on issue B that your having.
Dialogue: 0,0:35:52.34,0:35:55.88,Default,,0000,0000,0000,,And, so building solidary across the
Dialogue: 0,0:35:55.88,0:35:59.37,Default,,0000,0000,0000,,movement more effectively. Recognizing
Dialogue: 0,0:35:59.66,0:36:03.07,Default,,0000,0000,0000,,the ways in which other oppressions
Dialogue: 0,0:36:03.07,0:36:06.93,Default,,0000,0000,0000,,intersect with disability and change the
Dialogue: 0,0:36:06.93,0:36:10.25,Default,,0000,0000,0000,,nature of disability oppression. These
Dialogue: 0,0:36:10.25,0:36:13.81,Default,,0000,0000,0000,,would be my recommendations of what to do.
Dialogue: 0,0:36:13.81,0:36:16.83,Default,,0000,0000,0000,,Just basically raising your awareness
Dialogue: 0,0:36:16.83,0:36:19.94,Default,,0000,0000,0000,,of discrimination beyond just your own
Dialogue: 0,0:36:19.94,0:36:21.44,Default,,0000,0000,0000,,experience.