WEBVTT 00:00:09.014 --> 00:00:12.765 Ethical questions 00:00:12.953 --> 00:00:18.412 How is the right to life discussed with regard to people with profound intellectual and multiple disabilities? 00:00:18.434 --> 00:00:22.134 That is an extremely difficult question. 00:00:22.134 --> 00:00:25.594 It's really not easy to answer, 00:00:25.594 --> 00:00:28.494 because it has been a subject of debate for many years 00:00:28.494 --> 00:00:34.654 or decades. 00:00:34.654 --> 00:00:43.410 And there are very different answers to that question, 00:00:43.618 --> 00:00:48.138 because that is actually the crucial question: 00:00:48.138 --> 00:00:52.478 on what do I base the right to life? 00:00:52.758 --> 00:00:55.358 And to 00:00:55.358 --> 00:00:56.918 to explain it a little bit, 00:00:56.918 --> 00:00:58.238 I think you can 00:00:58.238 --> 00:00: 59.998 if you make a very rough distinction, 00:00:59.998 --> 00:01:00.778 you could say 00:01:00.778 --> 00:01:04.158 there are two different types 00:01:04.158 --> 00:01:06.858 of positions on this question, 00:01:06.858 --> 00:01:08.518 namely who has a right to life. 00:01:08.518 --> 00:01:12.318 One type of position says that 00:01:13.922 --> 00:01:15.382 the right to life is something 00:01:15.382 --> 00:01:21.602 that belongs, for example, to the members of a species. 00:01:21.602 --> 00:01:25.402 And in this case, that would mean 00:01:25.642 --> 00:01:31.382 that someone belongs or that someone is a human being. 00:01:31.482 --> 00:01:36.682 Human, so to speak, as a sort predicate. 00:01:36.682 --> 00:01:38.982 So someone belongs 00:01:38.982 --> 00:01:42.626 to a certain group of living beings 00:01:42.626 --> 00:01:43.886 namely to the living beings 00:01: 43.886 --> 00:01:45.346 we call humans. 00:01:45.346 --> 00:01:47.466 And because he belongs to this group, 00:01:47.466 --> 00:01:49.666 he or she has, independently 00:01:49.666 --> 00:01:53.206 from other characteristics, a right to life. 00:01:53.206 --> 00:01:57.986 So belonging to the human species would then be 00:02:00.450 --> 00:02:03.230 one type of answer. 00:02:03.230 --> 00:02:07.190 The other type of answer to the question, 00:02:07.190 --> 00:02:09.930 who has a right to life and what is the right to life, 00:02:09.930 --> 00:02:11.450 would then define 00:02:11.450 --> 00:02:13.830 to specific characteristics. 00:02:13.830 --> 00:02:16.050 So they would say, 00:02:16.050 --> 00:02:17.630 no, it's not enough 00:02:17.630 --> 00:02:20.630 to be classified as a human being, 00:02:20.630 --> 00:02:25.050 but beyond that, certain characteristics 00:02:25.050 --> 00:02:27.870 or certain characteristics that can be identified in the person 00:02:27.870 --> 00:02:31.382 must be present, 00:02:31.382 --> 00:02:33.522 which are the prerequisites for 00:02:33.522 --> 00:02:34.902 being able to say 00:02:34.902 --> 00:02:37.282 that a human being 00:02:37.282 --> 00:02:40.542 or an individual has a right to life. 00:02:40.542 --> 00:02:44.122 And there are positions 00:02:44.122 --> 00:02:49.802 that say the right to life must be determined 00:02:49.802 --> 00:02:55.662 to so-called personality criteria. 00:02:55.662 --> 00:02:58.922 These include things such as 00:02:59.426 --> 00:03:02.866 I have reason, 00:03:02.866 --> 00:03:05.666 I have the ability to self-determination, 00:03:05.666 --> 00:03:07.926 I am aware that 00:03:07.926 --> 00:03:12.146 I am an individual who can be distinguished from other individuals 00:03:12.146 --> 00:03:15.066 , 00:03:15.066 --> 00:03:16.266 so that there is something like 00:03:16.266 --> 00:03:19.566 clear internal and external boundaries, 00:03:19.56 6 --> 00:03:23.666 that I look in the mirror and am able to 00:03:23.666 --> 00:03:27.066 recognize myself in the mirror as Markus Dederich. 00:03: 27.522 --> 00:03:28.942 And so on and so forth. 00:03:28.942 --> 00:03:29.562 And those are 00:03:29.562 --> 00:03:34.402 just such personality criteria. 00:03:34.402 --> 00:03:38.062 And the second type of answers 00:03:38.062 --> 00:03:39.582 in the direction of saying 00:03:39.582 --> 00:03:43.742 that these or similar characteristics must be fulfilled 00:03:43.742 --> 00:03:47.142 in order to have a right to life. 00:03:47.142 --> 00:03:52.862 So someone like Peter Singer, for example, 00:03:52.862 --> 00:03:57.530 who says, I must fulfill such personality criteria. 00:03:57.530 --> 00:04:00.890 And the argument is 00:04:00.890 --> 00:04:05.070 in principle, among other things, not only 00:04:05.070 --> 00:04:08.950 but among other things, that he says 00:04:08.950 --> 00:04:12.410 if I have no awareness of myself, 00:04:12.410 --> 00:04:14.810 if I am not able to 00:04:14.810 --> 00:04:18.130 recognize and identify myself in the mirror, 00:04:18.130 --> 00:04:20.230 if I have no awareness of time, 00:04:20.230 --> 00:04:23.770 then I can't say, for example, 00:04:24.354 --> 00:04:25.694 I have the desire 00:04:25.694 --> 00:04:27.554 to stay alive. 00:04:27.554 --> 00:04:29.254 I have the desire 00:04:29.254 --> 00:04:31.594 to stay alive tomorrow. 00:04:31.594 --> 00:04:35.914 And living beings that cannot do this, 00:04:35.914 --> 00:04:41.314 says Peter Singer, have no right to live. 00:04:41.314 --> 00:04:47.154 And you are probably all familiar with these debates. 00:04:47.154 --> 00:04:48.494 And that then leads to 00:04:48.494 --> 00:04:53.354 that certain individuals are excluded from the group of those 00:04:53.922 --> 00:04:56.142 who are supposed to have a right to life. 00:04:56.142 --> 00:04:58.062 . 00:04:58.062 --> 00:05:03.782 I find that extremely difficult. 00:05:03.782 --> 00:05:06.702 So, of course, there are borderline cases 00:05:06.702 --> 00:05:10.662 in which one can argue 00:05:10.662 --> 00:05:12.962 and perhaps must argue 00:05:12.962 --> 00:05:16.882 whether every medical treatment 00:05:17.666 --> 00:05:21.246 must be started or continued. 00:05:21.246 --> 00:05:23.786 This certainly needs to be 00:05:23.786 --> 00:05:25.746 discuss this on a case-by-case basis, 00:05:25.746 --> 00:05:28.566 but I personally find it difficult 00:05:28.566 --> 00:05:32.806 to say from the outset, based on such criteria, 00:05:32.806 --> 00:05:37.126 that certain human individuals 00:05:37.126 --> 00:05:39.706 should not have the right to life. 00:05:39.706 --> 00:05:42.946 So I would rather argue that 00:05:42.946 --> 00:05:47.754 that being human itself is actually linked to dignity 00:05:47.754 --> 00:05:52.894 and to a right to life. 00:05:52.894 --> 00:06:01.306 In your opinion, is the quality of life of people with profound intellectual and multiple disabilities limited? 00:06:01.314 --> 00:06:05.354 That is also a very difficult question 00:06:05.354 --> 00:06:06.734 and that is why 00:06:06.734 --> 00:06:12.514 research into quality of life is so differentiated 00:06:12.514 --> 00:06:15.014 and that is also why there are 00:06:15.014 --> 00:06:18.634 very different positions on 00:06:18.634 --> 00:06:20.914 what quality of life actually is, 00:06:20.914 --> 00:06:23.174 whether quality of life can be measured, 00:06:23.174 --> 00:06:25.314 how quality of life can be measured, 00:06:25.314 --> 00:06:27.874 what parameters can be used to determine quality of life 00:06:27.874 --> 00:06:29.694 can be determined at all. 00:06:32.418 --> 00:06:34.418 So the question now is 00:06:34.418 --> 00:06:36.698 what I think about the statement 00:06:36.698 --> 00:06:38.498 that the quality of life of people 00:06:38.498 --> 00:06:41.818 with profound intellectual and multiple disabilities 00:06:41.818 --> 00:06:44.278 is reduced or restricted. 00:06:44.278 --> 00:06:47.358 As I said, that depends 00:06:47.358 --> 00:06:50.478 on the parameters or criteria. 00:06:50.478 --> 00:06:53.558 That's how it is, of course, 00:06:53.558 --> 00:06:56.598 that if I have a certain model 00:06:56.598 --> 00:06:58.838 or a certain theory about it, 00:06:58.838 --> 00:07:01.998 what it means to be human, 00:07:02.882 --> 00:07:06.482 Then I can conclude 00:07:06.482 --> 00:07:09.462 that human individuals 00:07:09.462 --> 00:07:12.062 who lack certain characteristics 00:07:12.062 --> 00:07:14.942 which I consider to be typically human, 00:07:14.942 --> 00:07:16.982 that as a result 00:07:16.982 --> 00:07:21.242 they also have a reduced quality of life. 00:07:21.242 --> 00:07:23.062 So let me give you an example 00:07:23.062 --> 00:07:24.802 that is interesting because 00:07:24.802 --> 00:07:28.442 because this position also 00:07:28.442 --> 00:07:31.142 exists within disability studies, 00:07:31.746 --> 00:07:33.466 namely that it is said 00:07:33,466 that the ability to see is a prerequisite for 00:07:40,586 accessing certain products 00:07:46,006 00:07:46.006 --> 00:07:48.706 or creations of human culture, 00:07:48.706 --> 00:07:52.006 such as paintings, for example. 00:07:52.006 --> 00:07:54.506 And if I am blind, 00:07:54.506 --> 00:07:57.026 then this possibility is taken away from me 00:07:57.026 --> 00:07:59.186 or at least greatly reduced. 00:07:59.186 --> 00:08:01.046 Of course, someone can tell me 00:08:02.466 --> 00:08:04.106 what is in a painting, 00:08:04. 106 --> 00:08:07.046 but for someone to describe a painting 00:08:07.046 --> 00:08:09.766 by Picasso is, 00:08:09.766 --> 00:08:11.926 I believe it is still something else, 00:08:11.926 --> 00:08:14.766 than actually seeing this painting. 00:08:14.766 --> 00:08:16.846 And so there is the position 00:08:16.846 --> 00:08:20.646 that such individual impairments 00:08:20.646 --> 00:08:23.006 do in fact have an influence 00:08:24.002 --> 00:08:26.322 on quality of life in the sense that 00:08:26.322 --> 00:08:27.702 my opportunities 00:08:27.702 --> 00:08:30.322 to participate in certain cultural achievements 00:08:30.322 --> 00:08:33.001 are limited. 00:08:33.001 --> 00:08:36.501 Now, one could also argue 00:08:36.501 --> 00:08:38.422 that there may indeed be limitations in a 00:08:38.422 --> 00:08:41.881 area, 00:08:41,881 but that there is the possibility 00:08:44,042 of breaking down barriers 00:08:47.622 --> 00:08:49.442 by removing barriers, 00:08:50.818 --> 00:08:54.158 to enable a certain degree of participation in these areas 00:08:54.158 --> 00:08:57.138 nevertheless 00:08:57. 138 --> 00:09:01.118 or to enable participation in other areas 00:09:01.118 --> 00:09:03.758 that are not affected, 00:09:03.758 --> 00:09:08.078 in order to perhaps compensate for deficits 00:09:08.078 --> 00:09: 10.638 that exist in other areas. 168 00:09:10.638 --> 00:09:12.158 10,638 that exist in other areas, 00:09:10.638 --> 00:09:12.158 to somehow compensate for 00:09:12.158 --> 00:09:14.838 and somehow achieve a balance. 00:09:19.458 --> 00:09:21.598 I think that's 00:09:21.598 --> 00:09:23.178 an important aspect. 00:09:23.178 --> 00:09:27.058 But now, of course, one can ask oneself 00:09:27.058 --> 00:09:29.638 and this is also discussed in the debate 00:09:29.638 --> 00:09:31.738 on quality of life, 00:09:31.738 --> 00:09:34.898 is quality of life something objective 00:09:34.898 --> 00:09:37.858 or is quality of life something subjective 00:09:37.858 --> 00:09:41.898 or is it a mixture of both? 00:09:41.898 --> 00:09:46.158 In politics, there is a very strong tradition of 00:09:46.158 --> 00:09:52.242 to define quality of life using objective parameters. 00:09:52.242 --> 00:09:54.222 And when you do that, 00:09:54.222 --> 00:09:56.562 then this often leads to 00:09:56.562 --> 00:09:59.102 a political obligation, 00:09:59.102 --> 00:10:02.722 that society 00:10:02.722 --> 00:10:04.782 and politicians are obliged to 00:10:04.782 --> 00:10:06.062 to provide all people 00:10:06.062 --> 00:10:08.942 who belong to a society 00:10:08.942 --> 00:10:12.022 certain opportunities, 00:10:12.022 --> 00:10:15.122 in order to participate in the quality of life, 00:10:15.122 --> 00:10:15.874 such as education 00:10:15.874 --> 00:10:19.994 or a certain minimum material standard, 00:10:19.994 --> 00:10:24.794 the granting of certain minimum rights 00:10:24.794 --> 00:10:26.434 and so on and so forth. 00:10:26.774 --> 00:10:30.274 But the interesting thing is 00:10:30.274 --> 00:10:32.974 and that's what makes 00:10:32.974 --> 00:10:37.574 the issue of quality of life so difficult, 00:10:37.574 --> 00:10:40.434 Quality of life is also 00:10:40.434 --> 00:10:42.634 something that is subjectively felt. 00:10:43.234 --> 00:10:45.914 And objective parameters may 00:10:45.914 --> 00:10:47.434 play an important role, 00:10:47.434 --> 00:10:49.154 but it may be 00:10:49.154 --> 00:10:50.754 that I have everything, 00:10:50.754 --> 00:10:52.554 that I have more money 00:10:52.554 --> 00:10:54.074 than I can spend, 00:10:54.074 --> 00:10:56.374 that I have many friends, 00:10:56.374 --> 00:10:59.394 that I have many things at my disposal, 00:10:59.394 --> 00:11:02.234 which are taken for granted in my society 00:11:02.234 --> 00:11:04.234 and yet I am unhappy. 00:11:07.842 --> 00:11:11.622 Objective parameters are no guarantee 00:11:11.622 --> 00:11:14.422 that I will subjectively feel 00:11:14.422 --> 00:11:17.782 that I am living a high-quality life. 00:11:17.782 --> 00:11:20.182 Conversely, however, it may be 00:11:20.182 --> 00:11:22.082 that I live in poverty. 00:11:22.082 --> 00:11:24.642 This is not meant to legitimize poverty in any way, 00:11:24.642 --> 00:11:25.482 but it may be 00:11:25.482 --> 00:11:27.882 that I have very little and live in poverty, 00:11:27.882 --> 00:11:30.842 but still subjectively feel that 00:11:30.842 --> 00:11:33.262 I lead a good life. 00:11:33.262 --> 00:11:37.422 This argument is sometimes countered by saying 00:11:37.422 --> 00:11:38.394 ah, okay, 00:11:38.394 --> 00:11:40.954 but poor people may also have learned 00:11:40.954 --> 00:11:43.274 to be content with little. 00:11:43.274 --> 00:11:46.614 And that is often the case, of course. 00:11:46.614 --> 00:11:48.014 Nevertheless, I believe 00:11:48.014 --> 00:11:50.554 that the subjective experience 00:11:50.554 --> 00:11:53.414 or perception of quality of life cannot actually 00:11:53.414 --> 00:11:58.914 not simply be reduced to objective parameters. 00:11:59.534 --> 00:12:03.454 And a very important point for me is 00:12:03.454 --> 00:12:06.274 that I actually believe 00:12:06.274 --> 00:12:08.074 that we 00:12:08.290 --> 00:12:11.550 the subjectively perceived quality of life 00:12:11.550 --> 00:12:14.370 of another person in general 00:12:14.370 --> 00:12:16.350 can only approximate 00:12:16.350 --> 00:12:18.630 and have no certain knowledge about it. 00:12:18.630 --> 00:12:20.610 And all the more so 00:12:20.610 --> 00:12:22.530 the less this other person 00:12:22.530 --> 00:12:24.890 has verbal language or we 00:12:24.890 --> 00:12:29.970 can communicate with them using other aids. 00:12:29.990 --> 00:12:33.830 And for me, that means 00:12:33.830 --> 00:12:37.598 that I believe we have to be very, 00:12:37.598 --> 00:12:40.058 very careful with this, 00:12:40.058 --> 00:12:43.878 a person just because they are severely 00:12:43.878 --> 00:12:45.698 or perhaps very severely 00:12:45.698 --> 00:12:47.958 or complexly impaired, 00:12:47.958 --> 00:12:51.878 based on certain parameters 00:12:51.878 --> 00:12:53.878 that we take for granted, 00: 12:53.878 --> 00:12:57.218 deny them quality of life. 00:12:57.218 --> 00:13:00.118 So you shouldn't be reckless 00:13:00.118 --> 00:13:02.722 and say, they're doing fine, 00:13:02.722 --> 00:13:04.362 everything's okay 00:13:04.362 --> 00:13:05.462 and everything's fine, 00:13:05.462 --> 00:13:06.842 that's not what I'm saying. 00:13:06.842 --> 00:13:08.042 So I want to live 00:13:08.042 --> 00:13:09.302 with a profound intellectual and multiple disability 00:13:09.302 --> 00:13:11.242 and not trivialize it somehow. 00:13:11.242 --> 00:13:14.402 That would be reckless. 00:13:14.402 --> 00:13:16.762 At the same time, I believe 00:13:16.762 --> 00:13:18.722 it is actually very difficult 00:13:18.722 --> 00:13:22.622 to deny quality of life across the board 00:13:22.622 --> 00:13:23.702 or to assume 00:13: 23.702 --> 00:13:27.302 a reduced quality of life, 00:13:27.554 --> 00:13:28.554 Precisely for that reason, 00:13:28.554 --> 00:13:29.294 because I believe 00:13:29.294 --> 00:13:31.274 that in the end it is very, very difficult 00:13:31.274 --> 00:13:33.574 to look inside another person 00:13:33.574 --> 00:13:39.494 and say something about their actual experience 00:13:39.494 --> 00:13:42.174 and feelings. 00:13:42.174 --> 00:13:44.034 But of course, that doesn't 00:13:44.034 --> 00:13:46.494 from our obligation to 00:13:46.494 --> 00:13:48.814 do as much as possible 00:13:48.814 --> 00:13:53.474 to ensure that this person is as well as possible. 00:13:53.474 --> 00:13:54.914 No question about it.27200:13:54.914 --> 00:14:06.178 Why is it important for employees in facilities for people with profound intellectual and multiple disabilities to deal with the issues of the right to life and quality of life? 00:14:06.178 --> 00:14:06.978 I believe that 00:14:06.978 --> 00:14:08.238 is why it is important 00:14:08.238 --> 00:14:10.678 that was in my previous answers, 00:14:10.678 --> 00:14:12.138 I think, in a way, 00:14:12.138 --> 00:14:13.238 that's why it's important, 00:14:13.238 --> 00:14:17.158 because I think we all 00:14:17.158 --> 00:14:19.918 have our own ideas about 00:14:19.918 --> 00:14:24.418 what it means to lead a good life. 00:14:24.418 --> 00:14:29.838 And one of the dangers is 00:14:29.838 --> 00:14:32.338 that we recognize what we have identified as right for ourselves 00:14:33.122 --> 00:14:35.682 as right for ourselves, 00:14:35,682 - -> 00:14:36,842 so now I'm talking 00:14:36.842 --> 00:14:38.662 mainly about quality of life, 00:14:38.662 --> 00:14:42.782 applying that to other people without reflection. 00:14:42.782 --> 00:14:43.402 So I think 00:14:43.402 --> 00:14:45.142 you just have to 00:14:45.142 --> 00:14:49.582 with your own ideas of correctness or normality, 00:14:49.582 --> 00:14:51.102 ideas of correctness 00:14:51.102 --> 00:14:54.682 and expectations of normality very cautiously 00:14:54.682 --> 00:14:56.202 and handle them very carefully 00:14:56.202 --> 00:14:57.102 and not simply 00:14:57.102 --> 00:14:59.182 impose on other people in any way. 00:15:00.546 --> 00:15:02.054 And that's why I think 00:15:02.054 --> 00:15:05.154 it's important to deal with it. 00:15:05.154 --> 00:15:08.014 I myself, and I say this quite openly, 00:15:08.014 --> 00:15:09.194 have had the experience 00:15:09.194 --> 00:15:13.014 in my first encounters with people 00:15:13.014 --> 00:15:16.434 with really profound intellectual and multiple impairments, 00:15:16.434 --> 00: 15:18.794 when I had absolutely no idea 00:15:18.794 --> 00:15:19.694 about this topic, 00:15:19.694 --> 00:15:21.934 that I immediately asked myself, 00:15:21.934 --> 00:15:25.354 oh, what kind of existence is that, 00:15:25,354 - -> 00:15:26,754 what kind of life is that? 00:15:26.754 --> 00:15:28.914 That's terrible. 00:15:29.826 --> 00:15:30.866 And in fact, I believe 00:15:30.866 --> 00:15:33.686 that many people think that. 00:15:33.686 --> 00:15:36.046 But I think 00:15:36.046 --> 00:15:37.266 that, in the end, 00:15:37.266 --> 00:15:40.926 we actually know very little about it spontaneously. 00:15:40.926 --> 00:15:43.606 And that's why it's important to 00:15:43.606 --> 00:15:48.746 your own criteria and expectations, 00:15:48.746 --> 00:15:49.746 what it means to 00:15:49.746 --> 00:15:51.866 live a good life, 00:15:51.866 --> 00:15:53.566 to question them. 00:15:53.566 --> 00:15:55.666 And as for the discussion about 00:15:55.666 --> 00:15:57.806 the value of life and everything 00:15:57.806 --> 00:16:00.114 that goes with it 00:16:00.114 --> 00:16:02.114 yes, right up to the question of 00:16:02.114 --> 00:16:04.954 whether it is legitimate to kill certain people 00:16:04.954 --> 00:16:08.154 painlessly 00:16:08.154 --> 00:16:10.014 under certain circumstances? 00:16:10.014 --> 00:16:12.194 I believe that 00:16:12.194 --> 00:16:13.234 is a question that, 00:16:13.234 --> 00:16:15.194 even if it might seem pretty crazy 00:16:15.194 --> 00:16:17.334 or far-fetched at first, 00:16:17.334 --> 00:16:19.374 it's actually a question 00:16:19.374 --> 00:16:22.574 that experts should at least 00:16:22.574 --> 00:16:25.722 deal with to a certain extent, 00:16:25.722 --> 00:16:27.022 because these are debates 00:16:27.022 --> 00:16:30.662 that are constantly being held in society 00:16:30.662 --> 00:16:32.242 and will continue to be held in the future 00:16:32.242 --> 00:16:34.202 . 00:16:34.842 --> 00:16:37.822 And I believe 00:16:37.822 --> 00:16:38.902 that is, 00:16:38.902 --> 00:16:40.102 not in the sense 00:16:40.102 --> 00:16:41.962 of taking on a paternalistic, 00:16:41.962 --> 00:16:45.806 role for themselves. 00:16:45.806 --> 00:16:47.246 But I do believe 00:16:47.246 --> 00:16:49.466 that under certain circumstances 00:16:49.466 --> 00:16:51.486 special education 00:16:51.486 --> 00:16:55.306 and professionals in disability services 00:16:55.306 --> 00:16:59.646 are also advocates in a certain way 00:16:59.646 --> 00:17:03.486 or should also stand up for certain people 00:17:03.486 --> 00:17:08.226 in the spirit of solidarity and advocacy.