0:00:00.320,0:00:04.400 In my work, and especially in Jan's journey, I don't know what 0:00:04.400,0:00:08.800 else I'll write, but this is my credo, which I try to follow, because it 0:00:08.800,0:00:14.400 's not easy, and I have my authors who are also guided by 0:00:14.400,0:00:21.080 the transformation of emotionality, yes, the transformation of suffering, the transformation 0:00:21.080,0:00:26.480 of experience into something, something different, into something new, into some new quality that, despite 0:00:26.480,0:00:30.359 the burden of experience, possesses a certain radiance. 0:00:30.359,0:00:36.120 Lightness, and perhaps even grace. I'll use that big word here, 0:00:36.120,0:00:41.800 but yes. [Music] 0:00:41.800,0:00:45.800 We invite you to listen to episodes of the new podcast series "Meetings of the Polish Studies Newsletter, 0:00:45.800,0:00:52.680 " titled "Engaged Polish Studies." Polish studies are not a helpless 0:00:52.680,0:00:57.840 observation of the world. They provide tools to navigate it, 0:00:57.840,0:01:04.760 help understand it, prevent exclusion and loneliness. 0:01:04.839,0:01:10.080 This is the Polish studies we want to showcase through our project. 0:01:10.080,0:01:14.200 Engaged Polish Studies. 0:01:14.370,0:01:25.439 [Music] Disability and Engagement. Under 0:01:25.439,0:01:30.200 this guiding principle, we are creating a series of conversations with activists, 0:01:30.200,0:01:35.520 writers, and researchers connected in various ways to the topic of disability. The series of conversations 0:01:35.520,0:01:40.079 about disability and its various dimensions of engagement, 0:01:40.079,0:01:44.520 inaugurated by this episode, is part of 0:01:44.520,0:01:48.200 a series created as part of a research project on the social functions 0:01:48.200,0:01:52.640 of contemporary humanities, including Polish studies. Polish studies, which 0:01:52.640,0:01:57.479 we want to consider as a socially significant field of humanities research. 0:01:57.479,0:02:00.399 The project I mentioned is carried out by the Institute of Literary Research 0:02:00.399,0:02:05.280 of the Polish Academy of Sciences in Warsaw. We have invited two authors 0:02:05.280,0:02:11.760 to today's conversation : Dorota Danielewicz, author of Droga Jana (Droga Jana), a book published in 0:02:11.760,0:02:16.400 2020. Good morning, Dorota. Good morning. Thank you very much for the invitation. and 0:02:16.400,0:02:22.000 Magdalena Moskal, author of Emil i my (Emil and Us, a Monologue of a Large Mother), a book 0:02:22.000,0:02:28.720 published in 2021. Hello, Magda. Hello. Good morning. Thank you very much for 0:02:28.720,0:02:33.959 the invitation and the opportunity for this conversation. Dorota Danielewicz is a journalist and 0:02:33.959,0:02:39.519 author who writes in both Polish and German. 0:02:39.519,0:02:44.319 She has lived in Berlin since 1981. She also works as a cultural manager. She curated 0:02:44.319,0:02:50.080 the second edition of Unrast Berlin, commemorating the Polish Presidency of the Council of Europe. 0:02:50.080,0:02:56.599 This year, she published books about Berlin, about women in 0:02:56.599,0:03:02.400 the Belarusian revolution, and the aforementioned "Jan's Journey," which was published in 2020 0:03:02.400,0:03:06.280 and translated into German two years later. 0:03:06.280,0:03:10.680 Dorota is currently working on a new book about Berlin. Our second 0:03:10.680,0:03:16.159 guest author, Magdalena Moskal, is an editor and academic, 0:03:16.159,0:03:20.760 author of the previously mentioned book "Emil i my, monologu matra wieldnej matka" (Emil and My, a Monologue of a Large 0:03:20.760,0:03:27.159 Mother), published in Krakow in 2021. Magdalena is not only 0:03:27.159,0:03:32.360 the author of this book but also the author of shorter essays that 0:03:32.360,0:03:36.439 have appeared in publications such as the biweekly "Pismo" magazine, the 0:03:36.439,0:03:40.799 monthly "Znak," and the new Eastern Europe. Magdalena also writes 0:03:40.799,0:03:46.159 columns in the series "What Mothers in the World Are Discussing" for the knowledge portal "Kosmos dla 0:03:46.159,0:03:51.239 Dziewek" (Cosmos for Girls). I'm raising three children. My name is Klaudia Muca Małek, and I'll 0:03:51.239,0:03:55.680 have the pleasure of hosting today's conversation. I'd like 0:03:55.680,0:04:00.120 to begin with your books, the books that inspired 0:04:00.120,0:04:05.680 today's conversation—Jana's journey and the book "Emil and Us." 0:04:05.680,0:04:11.079 I'd like to ask you first what 0:04:11.079,0:04:17.199 the most difficult moment in writing your books was. The initial moment, writing the first sentence, or the 0:04:17.199,0:04:24.080 final moment, drawing a full stop, concluding the narrative? Magda, it was so 0:04:24.080,0:04:28.639 difficult for me to begin. I really wanted to 0:04:28.639,0:04:33.000 break away from these common narratives, right? 0:04:33.000,0:04:39.280 That everything was supposed to be fine, right? Nothing foreshadowed any problems. And 0:04:39.280,0:04:44.199 then I thought, maybe this is how it should be, this is how we should start, as everyone thinks, and 0:04:44.199,0:04:50.600 then try to let the story flow. I knew it was silly 0:04:50.600,0:04:53.960 to say so, but there would be a problem with the dynamics of the story. Yes, because if 0:04:53.960,0:04:59.320 the most serious things happen at the beginning, and then we're, 0:04:59.320,0:05:05.639 let's say, trying to recover or trying to maintain our place in society, 0:05:05.639,0:05:11.720 then that's the problem with that dynamic at the end. And I also wanted to say more 0:05:11.720,0:05:16.680 , not only about Emil himself, but also about what happened. 0:05:16.680,0:05:20.680 I think it's a light theme of this book, about the shortcomings 0:05:20.680,0:05:25.080 of care, right? These shortcomings, which make life difficult for those most in need, but are probably 0:05:25.080,0:05:29.960 noticeable to everyone. Dorodo, was the first sentence the hardest for you 0:05:29.960,0:05:35.080 ? I mean, I approached writing a book about 0:05:35.080,0:05:39.479 my experience with Jan several times, but I wasn't. They weren't the right 0:05:39.479,0:05:45.400 moments. I wasn't mature enough, I hadn't 0:05:45.400,0:05:50.680 fully processed this story within myself. I wasn't entirely reconciled, perhaps. Through these 0:05:50.680,0:05:56.600 first attempts, there was still some anger at fate, some resentment, some 0:05:56.600,0:06:02.039 stories that I didn't want to portray, because I also 0:06:02.039,0:06:06.560 knew I didn't want to write a self-therapeutic book. It wasn't meant to be like this. And 0:06:06.560,0:06:11.160 when the right moment came, and it was during the protests by families with 0:06:11.160,0:06:16.360 disabled children in Poland in 2018, I started 0:06:16.360,0:06:21.720 publishing texts first on Facebook, and I sort of found the voice 0:06:21.720,0:06:26.240 I wanted to use. I found him, and it wasn't the first or last sentence that was 0:06:26.240,0:06:31.599 most important, but finding my own voice, finding the tone in 0:06:31.599,0:06:38.560 which I wanted to tell the story of my experience with Jan. And truly, 0:06:38.560,0:06:45.199 finding my voice took several years, until that moment of protest passed, and something 0:06:45.199,0:06:49.400 within me was released. I had the courage and found that voice with which 0:06:49.400,0:06:52.800 I spoke, or which spoke through me. And the sentences were already 0:06:52.800,0:06:57.000 flowing, already falling into place. The whole book seemed to have taken shape on its own, 0:06:57.000,0:07:02.479 as if waiting for its moment. This book, yes, the others I'd tried 0:07:02.479,0:07:06.759 to write before, weren't those books. I needed my own 0:07:06.759,0:07:11.400 inner maturity. I needed absolute, absolute acceptance 0:07:11.400,0:07:15.560 of the situation with Jan. I wrote this book with immense joy. For example, I wrote 0:07:15.560,0:07:19.599 about difficult things sometimes, but when I finished, I closed my laptop and went. 0:07:19.599,0:07:23.800 I described it in the countryside, went swimming in a river or for a walk. I was among 0:07:23.800,0:07:26.680 people who didn't speak Polish, they knew roughly what 0:07:26.680,0:07:30.599 I was writing about, but I couldn't read anything to them in detail, so they saw 0:07:30.599,0:07:35.639 me smiling, seemingly joyful and content. So it wasn't 0:07:35.639,0:07:41.120 difficult, it wasn't tiring, it wasn't torture to revisit certain 0:07:41.120,0:07:45.120 situations, because that's what I'd feared a few years earlier. Every moment 0:07:45.120,0:07:51.080 of rest, relaxation, some kind of escape from the topic of 0:07:51.080,0:07:55.000 disability and care was incredibly important to me, because I was gathering 0:07:55.000,0:08:00.120 strength then, unable to delve into the past, a very difficult and painful 0:08:00.120,0:08:04.440 past that still exists, which is also the present. But 0:08:04.440,0:08:07.840 I also had to delve into the past. The worst were those moments of waiting 0:08:07.840,0:08:11.960 , of probing into what was really going on with Jan. Yes, the uncertainty and 0:08:11.960,0:08:14.879 the deterioration of his health. I simply couldn't 0:08:14.879,0:08:20.639 go through it while writing. I couldn't. And then came the moment when it turned out that 0:08:20.639,0:08:26.319 these wounds had healed enough that I could enter this river 0:08:26.319,0:08:32.479 of memory, swim in it, pull myself out, as if fishing for fish that I could 0:08:32.479,0:08:37.360 serve to readers safely, completely for myself and 0:08:37.360,0:08:42.919 for them. Perhaps this is a good moment to say that Dorota was a mentor to 0:08:42.919,0:08:49.279 me when I was writing Emil, because Jana's Road had just been published in Poland, and I felt like 0:08:49.279,0:08:53.160 I heard such a crystalline voice in which, you're right, there was no 0:08:53.160,0:08:57.320 resentment. There was a story, Buddhist in spirit for me 0:08:57.320,0:09:02.200 , about how life is like this. And that really helped me a lot. I have the impression 0:09:02.200,0:09:07.600 that, if, you know, there were still some remnants of resentment 0:09:07.600,0:09:13.760 against the world, or some internalized sense of injustice, they 0:09:13.760,0:09:17.600 dissolved thanks to this reading. Or at least I became 0:09:17.600,0:09:22.320 aware of them, right? Just like you. I was writing about various 0:09:22.320,0:09:25.920 unpleasant things that happened, let's say, to us and to Emil from 0:09:25.920,0:09:30.920 the world, so to speak. However, I no longer felt that anger, 0:09:30.920,0:09:35.560 that classic question of why me? Thanks to your book, 0:09:35.560,0:09:41.120 and thanks to its perspective, right, because you described the life of an adult, I 0:09:41.120,0:09:47.320 also saw that you have to give it time, to see what 0:09:47.320,0:09:53.959 emerges and accept it. So it was very, very formative for me. 0:09:53.959,0:09:57.680 It was formative, and I really needed this book. Thank you very much. It's 0:09:57.680,0:10:02.200 incredibly moving, because now I hear that it really 0:10:02.200,0:10:07.920 does fulfill its purpose, right? In the world, it might even be a kind of writing aid in yours 0:10:07.920,0:10:14.040 , but I also have various other reactions, where I see that 0:10:14.040,0:10:18.880 Jana's path truly offers further lessons, and that was also the point. Yes, yes. I'm very 0:10:18.880,0:10:24.720 happy about that. Thank you very much. What you said really moved me. I'm 0:10:24.720,0:10:28.880 also very glad that, at the very beginning of the conversation, we discover this 0:10:28.880,0:10:33.760 connection and these mutual inspirations. It's always interesting not 0:10:33.760,0:10:38.680 only for literary scholars, of course, but also for readers in general, 0:10:38.680,0:10:45.360 to hear about the writing process, what texts 0:10:45.360,0:10:51.880 inspired the authors, how this dialogue was built within the narrative, because many narratives 0:10:51.880,0:10:56.519 are dialogical. Your narratives are also dialogical, and in a sense, you also 0:10:56.519,0:11:00.760 talk to each other through these books, right? 0:11:00.760,0:11:05.639 And before we delve into these more specific issues, I'd like 0:11:05.639,0:11:12.800 to ask you one more question: how, or what words, 0:11:12.800,0:11:18.240 would you use to introduce your own books to people who haven't read them yet. 0:11:18.240,0:11:24.040 Dorota, I think it's simply a lesson in life and empathy, that's all. Well, 0:11:24.040,0:11:28.920 I've always thought of my book that way, as being about motherhood, caregiving, 0:11:28.920,0:11:33.160 and disability. But then one of 0:11:33.160,0:11:36.160 my readers suggested it to me, talking about the social 0:11:36.160,0:11:41.639 under-mothering that occurs when people are undermothered, under-mothered, 0:11:41.639,0:11:47.399 and then there's a lack of care because someone didn't get what they needed when 0:11:47.399,0:11:51.480 they needed it. And then there's a lack of care in 0:11:51.480,0:11:56.240 public life, and we agreed that this is also about these care deficiencies, 0:11:56.240,0:12:02.360 these gaps, right, where there's always too little of that care and you can 0:12:02.360,0:12:07.959 pour, right, from empty to empty, right? Because, because there's always a lack of care here, and there's always a lack there 0:12:07.959,0:12:13.760 . So, it's sort of moving from the specifics to this metaphor, 0:12:13.760,0:12:17.519 but I thought to myself that sometimes after a book, 0:12:17.519,0:12:20.480 thoughts arise, which also come to us thanks to readers, 0:12:20.480,0:12:26.120 thanks to such encounters. And these shortcomings, worries, or generally this 0:12:26.120,0:12:31.720 lack of mothering, were for a long time a major driving force in my thinking about 0:12:31.720,0:12:36.360 various situations, right? Sometimes it soothed me, like, "Oh well, if someone 0:12:36.360,0:12:40.920 didn't get what they deserved, they won't give us what 0:12:40.920,0:12:45.720 we need." I'd like to spend a moment more on this conversation about the genesis 0:12:45.720,0:12:51.240 of your stories and narratives. Dorota, at the beginning of this conversation, 0:12:51.240,0:12:57.320 you mentioned that the protests 0:12:57.320,0:13:01.639 by people with disabilities and their families were a significant impetus for writing. Can we consider this particular event 0:13:01.639,0:13:08.680 a key impetus, or would you point to others? Well 0:13:08.680,0:13:12.240 , as I said, I tried to write a book about my experiences 0:13:12.240,0:13:15.760 with Jan several times, but it wasn't the right time. I wasn't in a good 0:13:15.760,0:13:21.000 mental state, I wasn't mature enough. But when spring 0:13:21.000,0:13:26.639 2018 arrived and the protests began, there was one moment that truly 0:13:26.639,0:13:30.399 unleashed something within me. It was a magical week. Well, I don't have 0:13:30.399,0:13:33.920 Polish television here in Berlin, but I was there, visiting my dad, who 0:13:33.920,0:13:38.920 was watching Polish television, and there was some report from the protests, and 0:13:38.920,0:13:42.399 then I found out—I didn't know—I was busy with my father, who was also scrubbing, 0:13:42.399,0:13:46.399 and there was something on TV, but suddenly she left. Then I found out 0:13:46.399,0:13:50.120 it was the then-Minister of Health. She went out to the protesting 0:13:50.120,0:13:53.040 parents, but she didn't really want 0:13:53.040,0:13:57.759 to talk to them at all. It was an absurd situation. One of the mothers, I think Iwona 0:13:57.759,0:14:02.279 Hartwiś, even kept saying, "Because you don't know how we feel, because you don't know 0:14:02.279,0:14:05.600 how we feel." There was a moment, a moment 0:14:05.600,0:14:12.639 I saw on TV that moved me incredibly, and then that sentence 0:14:12.639,0:14:16.560 wouldn't let go of me for several days. It was like it was 0:14:16.560,0:14:21.240 constantly echoing in my head. You don't know how we feel. And then there 0:14:21.240,0:14:25.600 was this holiday here in Berlin, Thursday, and I was supposed to go to the seaside with 0:14:25.600,0:14:29.399 friends, but the car broke down that Thursday morning, so we stayed in 0:14:29.399,0:14:34.320 Berlin, and on Friday morning, some strange force pulled me out of there at 5:00 a.m. 0:14:34.320,0:14:39.079 I had to go to the computer very early and wrote a text, 0:14:39.079,0:14:43.199 which I posted on Facebook, saying that I know how you feel, because I am you 0:14:43.199,0:14:47.120 as the mother of a child who will never be independent. I used that 0:14:47.120,0:14:50.440 phrase. I spent about two hours reading this text, and 0:14:50.440,0:14:54.880 that's where this voice appeared, and I was reading it in this thread, checking whether 0:14:54.880,0:14:59.759 I could run it now, publish it or not. And I remember that 0:14:59.759,0:15:06.720 I posted it at about 7:00 a.m., and it really did go viral, meaning lots of people shared 0:15:06.720,0:15:10.240 it. Later, it was read at protests. 0:15:10.240,0:15:14.320 A lot of people wrote to me about this text. And it was like 0:15:14.320,0:15:20.360 I couldn't stop writing. Something opened up inside me, and I had this tone 0:15:20.360,0:15:25.600 , and I wrote more texts. Various topics came to mind, and 0:15:25.600,0:15:30.199 I'm finally here to say that it's wonderful that Beata Stasińska was 0:15:30.199,0:15:34.399 a director, who, uh, is now a literary agent and 0:15:34.399,0:15:38.880 whom I've known for a very, very long time. She stated that, among other things, many 0:15:38.880,0:15:43.199 people reading these texts also really wanted to read the book, so I was 0:15:43.199,0:15:49.040 encouraged, but I also couldn't stop writing, and Beata noticed this and helped me 0:15:49.040,0:15:53.880 find a publisher. It was a literary publisher, and indeed 0:15:53.880,0:15:58.040 , I was, so to speak, in such a flow—you could call it that—yes, in some kind of 0:15:58.040,0:16:02.560 trance, in such a flow that I was actually able to write this 0:16:02.560,0:16:08.440 book. And it was very strongly about emotions, including my own 0:16:08.440,0:16:12.880 emotions, because I think I had repressed my emotions for a very long time, for 0:16:12.880,0:16:17.519 many, many years, simply to cope with the situation, with 0:16:17.519,0:16:22.160 Jan's incurable illness. He had been a seemingly healthy child for many, many years 0:16:22.160,0:16:26.240 , until something 0:16:26.240,0:16:31.399 disturbing started happening to him. We searched as a family for many years, living in 0:16:31.399,0:16:36.560 Berlin, with the best hospital in Germany, actually right here in this city, 0:16:36.560,0:16:40.079 and yet he couldn't manage to make a diagnosis. It would be faster 0:16:40.079,0:16:45.160 now , because I already know, I've been to the appropriate conferences, but 20 years 0:16:45.160,0:16:51.319 ago, Jan is now 33, well, over 25 years ago, it wasn't 0:16:51.319,0:16:57.360 possible. Yes. The daily functioning of the family, plus 0:16:57.360,0:17:02.279 coping with Jaś's experiences and the turbulence he 0:17:02.279,0:17:06.280 was experiencing, created a situation where I 0:17:06.280,0:17:11.880 couldn't deal with myself or my own emotions. So, with how 0:17:11.880,0:17:16.360 we feel, right? Because you don't know how we feel, this 0:17:16.360,0:17:20.600 question also applied to me. How do I feel? How did I feel? Yes, 0:17:20.600,0:17:24.959 that's why I wrote so often about this descent into the underworld of repressed emotions, 0:17:24.959,0:17:30.480 based on the reactions of readers. Um, it seems to me that these emotions are 0:17:30.480,0:17:35.840 as if I've perhaps reached some collective emotions as well, because I know 0:17:35.840,0:17:41.919 that people reading my book can identify with them, and 0:17:41.919,0:17:46.720 those who aren't in the same situation as us, Magdalena, with 0:17:46.720,0:17:49.600 disabled children—people who simply reached for this 0:17:49.600,0:17:55.120 book because they wanted to know what I wrote, or overcame 0:17:55.120,0:18:00.760 their fear of a difficult topic and read Jan's journey. And in many 0:18:00.760,0:18:07.000 situations, they identified with what I write. So, Jan's journey is, on the 0:18:07.000,0:18:11.440 one hand, a demonstration of the lessons Jan taught me, because I always say 0:18:11.440,0:18:16.039 I had a guru, I don't need any gurus. I have a guru, and Jan is still there, and 0:18:16.039,0:18:21.280 he gives me these life lessons. On the other hand, it's a kind of 0:18:21.280,0:18:27.159 processing of emotions, but from a great distance, because I could 0:18:27.159,0:18:32.000 write about them just as I did when I wrote about them so intensely. I think Jon's journey 0:18:32.000,0:18:36.480 is very intense, but I didn't have to relive them anymore. It was 0:18:36.480,0:18:40.240 amazing. I didn't have to go through fear, 0:18:40.240,0:18:47.080 rage, I could use them as material for my creative work, and that was 0:18:47.080,0:18:53.159 a brilliant discovery. From what you said 0:18:53.159,0:18:58.320 , one could conclude that writing itself is also emotional labor, right? There are 0:18:58.320,0:19:02.840 books that are very structured, that rely on, I don't know, gathering 0:19:02.840,0:19:06.320 facts, processing facts. Now this book I'm writing about Berlin is 0:19:06.320,0:19:10.360 more like that, although I also try to include emotions in it, but 0:19:10.360,0:19:15.720 there's more research, more inquiry, more organizing. 0:19:15.720,0:19:21.000 Sober. There are books that rely on manipulating 0:19:21.000,0:19:24.799 the reader's emotions, which I, for example, personally don't like. I don't want to be 0:19:24.799,0:19:29.320 manipulated by emotions forced upon me, even 0:19:29.320,0:19:34.600 if they're in the best possible form. That's what I always say here: the better, the worse. 0:19:34.600,0:19:38.720 In my work, and especially in Jan's journey, I don't know what 0:19:38.720,0:19:43.080 else I'll write, but this is my credo, which I try to follow, because it 0:19:43.080,0:19:48.679 's not easy, and I have my authors who are also guided 0:19:48.679,0:19:55.360 by the transformation of emotionality, yes, the transformation of suffering, the transformation 0:19:55.360,0:20:00.760 of experience into something, something different, something new, some new quality that, despite 0:20:00.760,0:20:06.640 the weight of experience, possesses a certain radiance, lightness, and perhaps 0:20:06.640,0:20:12.640 even grace. I'll use that big word here, but yes, and I have 0:20:12.640,0:20:16.640 writers who were able to do this, whom I love for precisely that reason. 0:20:16.640,0:20:22.360 For example, there's Gustaw Herling Grudziński and his novel "Another World," or as 0:20:22.360,0:20:27.559 Bohumil Hrabal wrote, who wrote about depression, about all aspects 0:20:27.559,0:20:32.640 of life, but there was a smile in this, there was transformation in this. I remember at 0:20:32.640,0:20:37.559 the Krykoteka in Krakow. I also loved Kantor's theater and managed 0:20:37.559,0:20:42.799 to see a few performances, even meeting him in Nuremberg once and in Krakow 0:20:42.799,0:20:48.799 as well. And at the Krikoteka there's a recording in German, an interview with Tadeusz 0:20:48.799,0:20:55.600 Kantor from Nuremberg, where he says that if an artist takes material 0:20:55.600,0:20:59.760 from life, takes the suffering we go through, all the terrible 0:20:59.760,0:21:05.159 things that people do to each other, yes, or that happen to us, and simply 0:21:05.159,0:21:08.679 uses it as material without transformation. 0:21:08.679,0:21:11.640 Without transformation. Not really an artist, if someone does this, if 0:21:11.640,0:21:15.640 they use all this as material without transforming 0:21:15.640,0:21:20.919 these difficult themes, they're as weak a villain as the one who 0:21:20.919,0:21:25.960 did all these things. Yes, an artist must transform. And I was so 0:21:25.960,0:21:30.200 delighted when I found it playing constantly, as if on 0:21:30.200,0:21:36.600 some monitor in Krik, in the cantor's museum, because he expressed what 0:21:36.600,0:21:42.320 guides me as a credo, right? Not everyone can do it. I try, I don't 0:21:42.320,0:21:47.799 know, maybe it came out of Jan's journey, I think it did. We'll see what 0:21:47.799,0:21:52.679 else comes out, or doesn't come out in the future, but it is a 0:21:52.679,0:21:56.880 maxim that guides me and which I consider very important, very 0:21:56.880,0:22:00.400 significant. Magdalena, in the case of Emil, 0:22:00.400,0:22:05.200 the book you wrote, could you also point to one such 0:22:05.200,0:22:10.400 event, one such experience that became the impetus for you to start 0:22:10.400,0:22:15.679 writing? I'm also really thinking about this protest by people with disabilities, and 0:22:15.679,0:22:20.600 it wasn't even like Dorota's—I didn't start writing then, but it 0:22:20.600,0:22:25.080 was something that kind of struck me, that it was this kind of widespread contempt 0:22:25.080,0:22:30.000 that people can't even hide. 0:22:30.000,0:22:34.279 I've also been thinking about various situations of subordination and power, 0:22:34.279,0:22:40.360 haven't I? The parliamentary situation reminded me of hospital situations, where I don't know 0:22:40.360,0:22:44.720 how it is elsewhere, but in the case of Polish children's hospitals 0:22:44.720,0:22:48.640 here, you could say that 0:22:48.640,0:22:52.640 Prokocin is notorious for its mistreatment of parents and children, and unfortunately, that hasn't 0:22:52.640,0:22:56.840 changed. Just yesterday I was talking there with Dorota Grojecka about this 0:22:56.840,0:23:01.600 book, "Blood Cells," and before we entered the audience, she 0:23:01.600,0:23:05.000 was talking about all the terrible things that 0:23:05.000,0:23:09.640 still happen to parents. But we can't talk about them too 0:23:09.640,0:23:13.159 much, because there's the risk of returning to those places. Yes, so again, this 0:23:13.159,0:23:18.039 situation of subordination and power, and the fact that we are in a dance we can't 0:23:18.039,0:23:24.480 free ourselves from, and that our protest could later harm our children. 0:23:24.480,0:23:29.279 I then dared to take Emil to Prokocim, but I don't even know if 0:23:29.279,0:23:35.240 it got through, right? I handed it to a nurse, a caregiver, I don't know 0:23:35.240,0:23:39.159 if it got through to the decision-makers, right, to the head doctors, whether they even had 0:23:39.159,0:23:43.279 the time or inclination to look at such a book. I suspect not. In any 0:23:43.279,0:23:48.559 case, I thought to myself that if there were any framework, the second framework 0:23:48.559,0:23:54.039 that helped me sort of nail it all down were the protests after the tightening of 0:23:54.039,0:23:59.640 abortion law, so from the protests of people with disabilities to 0:23:59.640,0:24:05.039 To the women's protests. That umbrella march. I remember buying 0:24:05.039,0:24:09.960 some medicine at the pharmacy in the clinic, and 0:24:09.960,0:24:14.320 the women were in black. Those pharmacists who had to be at work, doctors and 0:24:14.320,0:24:18.840 nurses, even if they wore scrubs. And 0:24:18.840,0:24:23.440 I remember that somehow it really strengthened me then, that I thought to myself that 0:24:23.440,0:24:27.080 there was some topic here that I didn't understand yet, but I wanted 0:24:27.080,0:24:31.320 to grasp it—a kind of violence and contempt that affects 0:24:31.320,0:24:35.640 families, people with disabilities, and women alike. 0:24:35.640,0:24:39.440 Now, when you said that you don't know how we feel, that 0:24:39.440,0:24:44.399 would probably be a catchphrase that could be extended, wouldn't it, from 2017 to 0:24:44.399,0:24:49.320 probably today, and that basically no one talks about how we 0:24:49.320,0:24:53.360 feel in these various situations where, as you say, you have to 0:24:53.360,0:24:58.039 rein in your emotions because they can bring about—let's say, 0:24:58.039,0:25:02.799 I'm weak at reining in my emotions, and if there's some kind of 0:25:02.799,0:25:06.679 thud or whip over me, I can harm Emil, so I can harm 0:25:06.679,0:25:10.360 the children. So if I manage to contain this anger, or resentment, or 0:25:10.360,0:25:15.480 sense of injustice, it stays with me, and suddenly it turned out that maybe 0:25:15.480,0:25:19.720 the book will be such a place. It's interesting that on the one hand, I thought 0:25:19.720,0:25:24.480 I hadn't managed to be as Buddhist as you, Dorota, but on the other, 0:25:24.480,0:25:29.159 I felt like, damn it, I had this feeling, I have issues to deal with here, I don't know 0:25:29.159,0:25:34.240 if I managed to deal with them. Things don't happen over the course of even 0:25:34.240,0:25:39.080 a single generation, right? Children in the hospital, that easily, but 0:25:39.080,0:25:43.399 at least I had that sense of power. And yesterday, Dorota Grojecka said 0:25:43.399,0:25:48.120 a very good thing: when our children are ill, we are 0:25:48.120,0:25:51.799 limited, so limited in our agency, right? Because at a certain 0:25:51.799,0:25:55.760 point, nothing depends on us, or very little depends, or 0:25:55.760,0:26:00.279 we know nothing, and the doctors don't know either, because she had similar experiences to yours. For 0:26:00.279,0:26:05.320 me, the diagnosis was simpler, that suddenly, a person 0:26:05.320,0:26:10.640 really needs a bit of control in other places, as if 0:26:10.640,0:26:16.240 something else depends on them, and that writing was some form 0:26:16.240,0:26:20.200 of agency or regaining that agency that 0:26:20.200,0:26:24.919 fate, the system, has just taken away from us, depending on how we call it. When it comes to how we 0:26:24.919,0:26:30.440 feel and empathy, well, that's kind of the foundation of empathy, right? Having that 0:26:30.440,0:26:36.279 ability to empathize with the emotions and needs of others. And that's really 0:26:36.279,0:26:41.120 very difficult if we've never experienced 0:26:41.120,0:26:46.120 fate. I still get absurd questions 0:26:46.120,0:26:50.720 or suggestions, for example, where I say, "No, I'm 0:26:50.720,0:26:55.600 in Berlin because Jan is here, and even if I'm away, well, sometimes I have to 0:26:55.600,0:26:59.840 go on vacation somewhere for two weeks. But I've been in 0:26:59.840,0:27:04.320 a sanatorium for longer than that, and I feel really bad then. Even though 0:27:04.320,0:27:08.480 he doesn't live at home, visits are necessary, 0:27:08.480,0:27:12.880 trips are necessary, home visits are necessary, conversations with caregivers are necessary, 0:27:12.880,0:27:16.840 check-ins are necessary. I don't know if his room is 0:27:16.840,0:27:21.600 clean, or if I sometimes have to order things. Right now, 0:27:21.600,0:27:25.840 one of the brakes on his wheelchair is broken, and so on. I'm responsible for that. 0:27:25.840,0:27:29.960 Dad, Jasia is in Gdańsk. That's why I'm not in Gdańsk, for 0:27:29.960,0:27:34.360 example, because there's so much 0:27:34.360,0:27:40.559 still to manage, right?" Even though I don't have Jan around 24/7 anymore, and 0:27:40.559,0:27:44.519 I still feel like even with the book I have to constantly 0:27:44.519,0:27:49.200 explain things, like, for example, that it's not like I gave up my child, I gave him up 0:27:49.200,0:27:53.000 , that he lives somewhere else, but I 0:27:53.000,0:27:56.559 have absolutely no contact with him anymore. I'm constantly dealing with him. 0:27:56.559,0:28:00.440 Yes, there are always things. Something's on the desk, I travel, I visit, 0:28:00.440,0:28:04.120 I buy something for him. Here, I ran out of toothpaste, and here, I need to 0:28:04.120,0:28:07.360 buy special shampoo, and here, I just need to take it and go out for ice cream, and so on. There's constant 0:28:07.360,0:28:11.000 interaction. There's a lot of that interaction. Just like in families, like 0:28:11.000,0:28:15.320 people caring for elderly parents, they shop, 0:28:15.320,0:28:18.559 they travel, they do things, even if they don't live together. So there's that. 0:28:18.559,0:28:23.159 There's so much. And this explanation, or attempt to explain how 0:28:23.159,0:28:26.559 someone feels, how I feel, how other parents with 0:28:26.559,0:28:30.440 disabled children might feel, I think is very important, and 0:28:30.440,0:28:36.600 it's wonderful when our books are read by people who don't 0:28:36.600,0:28:42.159 have disabled family members, because they want to know how we 0:28:42.159,0:28:47.320 feel, even a little bit. That's why we read, that's why we watch movies 0:28:47.320,0:28:50.640 , I guess. Probably mainly because we go to the theater, right? To 0:28:50.640,0:28:55.640 experience how people feel and what they experience in situations 0:28:55.640,0:29:00.840 we don't experience ourselves. That's why literature exists, and that's why TV series exist, 0:29:00.840,0:29:04.960 which we also watch so eagerly today—to get a glimpse of that 0:29:04.960,0:29:09.440 other experience, those other emotions. Yes, we learn empathy throughout 0:29:09.440,0:29:14.279 our lives, because there are so many different areas, right, that we've never 0:29:14.279,0:29:18.279 experienced. We can't imagine how someone might 0:29:18.279,0:29:23.000 feel in a given situation. And we only see it when we enter 0:29:23.000,0:29:27.519 those situations ourselves, right? Where our eyes open and, oh my God, it's like this, 0:29:27.519,0:29:31.320 like when my leg hurts, right? And it's like this, like when I'm lying in bed and can't get up, right? 0:29:31.320,0:29:35.080 And it's like this, like when I suddenly have no money and I don't know. It's interesting, 0:29:35.080,0:29:38.440 it's fascinating, but that's why we create. It just seems to me that 0:29:38.440,0:29:42.519 it's dangerous to flaunt emotions. I mean, it's something else 0:29:42.519,0:29:48.120 , like, showing, yes, it is, but this moment of transformation is 0:29:48.120,0:29:53.760 very important, I don't know, because in German we have a word for spiritual 0:29:53.760,0:29:57.440 garbage, so as not to make someone spiritual, not to throw them, say, 0:29:57.440,0:30:01.519 to a friend, but you can also throw them at readers, right? Or at some 0:30:01.519,0:30:06.720 film or theater audience, your traumas or experiences. So 0:30:06.720,0:30:11.440 here, as if it were art, the balance between processing some 0:30:11.440,0:30:16.480 difficult topic and literature, is precisely this moment of transforming 0:30:16.480,0:30:22.320 emotions into literature and finding a form that helps someone understand, 0:30:22.320,0:30:28.640 but doesn't kill them with what emerges from a given 0:30:28.640,0:30:33.760 story. What you said, Dorota, about this 0:30:33.760,0:30:39.440 spiritual garbage dump and the display of emotions and the 0:30:39.440,0:30:44.679 over-expression of something immediately reminded me of what Magda wrote about in her 0:30:44.679,0:30:49.440 book, writing specifically about emotional labor and referring to this 0:30:49.440,0:30:53.799 category, which is also essentially a metaphor for a container, isn't it? Being 0:30:53.799,0:31:02.039 a container for other people's emotions, which often leads to there being no 0:31:02.039,0:31:05.760 space at all to talk about your own emotions, for example. So 0:31:05.760,0:31:11.480 here I'll show you a book called Emotional Labor by Rose Hackman. She simply 0:31:11.480,0:31:15.760 elaborates on what we're talking about now, about how these vectors 0:31:15.760,0:31:19.720 of power positions—a woman, a man—often make women these 0:31:19.720,0:31:24.519 containers. She's absolutely not dealing with children here, is she? Because she explains 0:31:24.519,0:31:29.440 that you need to be a container for children, so that they can then be 0:31:29.440,0:31:33.799 for others. However, at the author's meeting, we were joking that 0:31:33.799,0:31:36.960 once you're, like me, a mother of three 0:31:36.960,0:31:41.279 and writing about caregiving, everyone thinks I might as well 0:31:41.279,0:31:46.080 be a mother, right? It's just that when you're so 0:31:46.080,0:31:53.080 unmothered, that's where people rush to. And 0:31:53.080,0:31:58.159 it's interesting that sometimes my children, the older ones, are such guardians, right? 0:31:58.159,0:32:03.000 Remember that if you're a mother, you're ours, right? And right now, don't you 0:32:03.000,0:32:07.679 worry about other children at the pool and their needs, because their parents are having 0:32:07.679,0:32:13.360 fun and don't seem to understand their needs as well as you do, because you're 0:32:13.360,0:32:18.120 trained in it. It's true that books like this invite you to 0:32:18.120,0:32:23.320 share your experiences. I was wondering how you manage that. So, if someone 0:32:23.320,0:32:28.000 buys my book, it's like I have to listen to their 0:32:28.000,0:32:33.000 story, and then you don't know whether to be happy about the large 0:32:33.000,0:32:35.720 readership or not. Obviously, not everyone reacts this way. But 0:32:35.720,0:32:40.840 I did have such meetings, it's true, and in my family it 0:32:40.840,0:32:44.600 's also important, of course, because it kind of opens a person to these experiences that 0:32:44.600,0:32:50.360 maybe they had closed off, but it was really another space 0:32:50.360,0:32:55.840 where you had to set boundaries, so as not to just become 0:32:55.840,0:33:01.159 A foster mother and psychotherapist, as it were, for all the other unheard people. 0:33:01.159,0:33:06.120 This leads us beautifully to the question of activism, which 0:33:06.120,0:33:13.080 is somewhere nearby. Yes, there are quite a few questions that you've already anticipated, 0:33:13.080,0:33:18.440 by answering them in your statements so far, because we 0:33:18.440,0:33:23.600 also had a prepared question about the audience. You mentioned 0:33:23.600,0:33:27.080 social groups, those linked to 0:33:27.080,0:33:31.120 institutions that are often the very source 0:33:31.120,0:33:35.720 of power, the institution that exercises some kind of authority, right, over a parent or 0:33:35.720,0:33:40.519 a child with a disability. Your books are 0:33:40.519,0:33:44.679 socially engaged in this sense of activistism, because they describe, for example, the 0:33:44.679,0:33:50.480 healthcare system or are primarily critical of 0:33:50.480,0:33:56.519 social policy in Poland or Germany. So I'd like to ask, is there another 0:33:56.519,0:34:02.159 audience for your books that should be identified? Who else were these books 0:34:02.159,0:34:06.120 addressed to? I'll tell you a little, and I'll answer it a bit jokingly, but it's about 0:34:06.120,0:34:11.159 the thoughts that came out afterward, that this book is primarily for mothers, 0:34:11.159,0:34:15.079 for mothers of children with disabilities. I mean, that was the 0:34:15.079,0:34:21.040 main audience, clearly female. It was as if men 0:34:21.040,0:34:26.359 were simply in the significant minority; only a few men read this book. 0:34:26.359,0:34:29.320 But then I also joked that these groups are actually 0:34:29.320,0:34:33.240 shrinking, right? I mean, mothers with many children, or left-wing mothers 0:34:33.240,0:34:36.320 with many children who have a child with a disability, right? Suddenly 0:34:36.320,0:34:41.000 , it turns out that, paradoxically, these very groups are shrinking. The 0:34:41.000,0:34:46.200 deeper you delve into the text, I've also encountered various—I don't 0:34:46.200,0:34:50.359 know if they were objections or expectations—people have expressed 0:34:50.359,0:34:54.560 about my book. One of the strangest for me, because it also came from a fellow 0:34:54.560,0:34:59.280 editor who said he liked it, he also has a child with 0:34:59.280,0:35:03.800 a disability, but that there's no God here at all, and how could I have written 0:35:03.800,0:35:08.560 such a book without God, right? So I seem to remember thinking that it 0:35:08.560,0:35:12.560 's a novelty, no longer explaining just what's there, but also 0:35:12.560,0:35:18.839 what others think isn't. And what I wrote, for example, about 0:35:18.839,0:35:25.160 the right to choose, or from those feminist perspectives on care, 0:35:25.160,0:35:30.560 turned out to ultimately narrow, not expand, my audience. 0:35:30.560,0:35:35.160 So you could say that if the title was a bit overwhelming, 0:35:35.160,0:35:37.520 it spoke more about having many children than about 0:35:37.520,0:35:40.680 disability. Although disability is a somewhat 0:35:40.680,0:35:45.680 dominant theme in the first part, it later turned out that, as 0:35:45.680,0:35:50.000 I read, readers—perhaps I don't want to say they were dropping out—were more likely 0:35:50.000,0:35:53.839 those who read it to the end, but not everyone seemed ready to 0:35:53.839,0:35:58.880 agree. Some believed that it was impossible to survive disability 0:35:58.880,0:36:03.920 without spiritual support, without God. Others felt that the issue of personal 0:36:03.920,0:36:09.319 choice and the right to choose others was, for some, incompatible. I mean 0:36:09.319,0:36:14.359 , okay, I could have decided to give birth to this child and want it, desire 0:36:14.359,0:36:18.760 it to come into the world, but at the same time, why do I allow others to have a choice and 0:36:18.760,0:36:23.440 a different opinion? So, I have the impression that my book provoked 0:36:23.440,0:36:29.400 people to clarify their own attitudes towards the phenomena I described, 0:36:29.400,0:36:33.720 and in many places they disagreed with me, but they also often said 0:36:33.720,0:36:37.880 it was worth reading. So maybe, I don't know, I simply 0:36:37.880,0:36:40.920 blame myself for coming to me, yes, but first I engage them in 0:36:40.920,0:36:47.079 conversation, and then it's not like I can't 0:36:47.079,0:36:51.240 handle all these stories. Yes, but yes. It was an 0:36:51.240,0:36:55.240 observation for me that these readerships are rather narrowing. 0:36:55.240,0:37:01.359 The more precise one is, yes, the smaller the readership. 0:37:01.359,0:37:06.040 Speaking of God, in my case, on John's path, there are gods who are toying with us, and that was 0:37:06.040,0:37:10.200 enough, yes, for the readers. Yes. And that's fortunate. I 0:37:10.200,0:37:13.240 mean, I think I'm reaching very diverse readerships, because, as 0:37:13.240,0:37:17.319 I said, I even had a meeting with the Dominicans. Maybe that's why I have such a rather, 0:37:17.319,0:37:20.960 perhaps iconoclastic, chapter about how Jan and I used to go to the church 0:37:20.960,0:37:24.280 outside my window, to which I had the key from a retired pastor. 0:37:24.280,0:37:28.160 Evangelical, but where we went with stuffed animals and shouted, 0:37:28.160,0:37:31.599 sang various songs—I mean, mostly me, he 0:37:31.599,0:37:36.280 couldn't do it anymore, but he went to Jesus as if he were his friend, because he 0:37:36.280,0:37:40.200 considered him his buddy. Well, I included that chapter, but somehow it 0:37:40.200,0:37:46.480 didn't offend anyone too much. It rather evoked some emotion, and I didn't 0:37:46.480,0:37:50.200 have any trouble with people of very deep faith because of it, for example. 0:37:50.200,0:37:57.839 Quite the opposite, as it turned out. Yes. And as for the recipients, for me, 0:37:57.839,0:38:01.480 there's another factor: I'm writing about a disabled adult 0:38:01.480,0:38:06.839 who lives in Germany. So many situations are different 0:38:06.839,0:38:10.319 here than in Poland, as I now know from reading and from 0:38:10.319,0:38:15.960 experience. And honestly, there's a big difference in the quality of treatment 0:38:15.960,0:38:19.040 of disabled children, parents of disabled children. There's more 0:38:19.040,0:38:23.119 respect. I have that chapter about addressing me as "sir," right? Or "you," or " 0:38:23.119,0:38:27.520 mister." Although I once experienced such a situation, as it were, in court. I'm 0:38:27.520,0:38:32.000 Jan's legal guardian, so every few years, you go to 0:38:32.000,0:38:37.640 the district court to renew this position. And once, it happened that the 0:38:37.640,0:38:41.119 judge seemed to completely ignore Jan and, instead of addressing him, even though he 0:38:41.119,0:38:46.640 couldn't respond, she addressed me, speaking about 0:38:46.640,0:38:50.319 Jan in the third person. Yes, I really don't like this situation. When it comes to him, 0:38:50.319,0:38:55.680 the person should actually be addressing Jan formally. But when it comes to 0:38:55.680,0:39:00.400 hospitals and tests, the most I've encountered 0:39:00.400,0:39:03.800 is Jan being unable to do certain things or being unhappy, and 0:39:03.800,0:39:06.880 the nurses, for example, weren't very prepared for his 0:39:06.880,0:39:10.960 type of disability during tests many, many years ago. So, it's as if they 0:39:10.960,0:39:14.839 thought they could get something done in 10 minutes, attach some electrodes, for example, and 0:39:14.839,0:39:19.119 he would rip them off, and it all went on, lasted, for example, half an hour 0:39:19.119,0:39:24.359 , or it didn't work at all, and it was as if there was no approach, but it wasn't 0:39:24.359,0:39:28.359 an unpleasant, unpleasant approach from the staff, it was simply some 0:39:28.359,0:39:33.560 cognitive problem, and that's all. And on the third hand, a very 0:39:33.560,0:39:39.240 important issue is the issue of adulthood and the fact that a person with 0:39:39.240,0:39:43.319 a disability can live outside their home and under what conditions. And I know that 0:39:43.319,0:39:49.640 this is of interest to many, many, many, readers, too, and 0:39:49.640,0:39:55.040 I'm very happy because I've had people with a disabled child from Szczecin, 0:39:55.040,0:39:59.680 for example, and now I know that after visiting Jan and the various dilemmas these 0:39:59.680,0:40:05.640 parents have, they're building a home for people with autism in Szczecin. Such 0:40:05.640,0:40:10.079 a place is being built. So, Jan's path is providing the impetus here. If I 0:40:10.079,0:40:13.359 can actually show someone something, even personally, take them somewhere, or 0:40:13.359,0:40:18.359 explain something, I'm very happy to do so, because there aren't crowds here 0:40:18.359,0:40:22.400 that I can't handle. And speaking of engagement, 0:40:22.400,0:40:25.920 I'd say it's also engagement, because the book was published in German, 0:40:25.920,0:40:30.520 I've had a lot of interviews, and there's also a place where 0:40:30.520,0:40:35.000 Jan lives, a community belonging to a large company, called Cooperative 0:40:35.000,0:40:38.839 Mch. And last year, I was in such a group as a mother of a person with 0:40:38.839,0:40:42.119 disabilities, employees of that cooperative, people with 0:40:42.119,0:40:46.560 disabilities who could talk about themselves and express various 0:40:46.560,0:40:51.119 kinds of experiences living in such communities of that cooperative, 0:40:51.119,0:40:55.920 talking about themselves, about how they experience different situations. And I was in 0:40:55.920,0:40:59.800 a group that's ending in two or three weeks 0:40:59.800,0:41:04.160 . We have a final meeting and presentation of the results, where a document was being 0:41:04.160,0:41:08.160 formulated specifically about attitudes towards people with 0:41:08.160,0:41:12.359 disabilities, right? What should that attitude look like, what should be 0:41:12.359,0:41:15.599 considered, and so on. It was very... I couldn't be at every meeting, but 0:41:15.599,0:41:20.720 I was at most, and honestly, we were kind of going around in circles until 0:41:20.720,0:41:25.079 I read a few chapters from Jan's path, and it turned out that here too, 0:41:25.079,0:41:28.640 some kind of dam had been released, and suddenly everyone started thinking. Suddenly, the board was 0:41:28.640,0:41:34.400 full, full of suggestions. Everything became clear. Here, too, I noticed 0:41:34.400,0:41:38.760 that Jan's path could somehow help formulate such a general idea. 0:41:38.760,0:41:45.240 A document, so ethical. It's supposed to be an ethical document that helps 0:41:45.240,0:41:49.280 assistants to people with disabilities, employees, maintain a certain 0:41:49.280,0:41:53.079 attitude toward people with disabilities. And 0:41:53.079,0:41:56.800 I learned a lot from those with disabilities, those who 0:41:56.800,0:42:01.240 participated, who said very, very wise things that Jan can't 0:42:01.240,0:42:05.160 tell me. I mean, I also constantly have this doubt within me. 0:42:05.160,0:42:09.920 Yes, I wrote about him as best I could, according to my conscience, but I 0:42:09.920,0:42:14.119 always kept in mind that I don't know everything, that perhaps 0:42:14.119,0:42:17.800 many of the things I describe, he feels completely differently. 0:42:17.800,0:42:23.160 Yes. And I also end the book with such a big question mark, really. Yes. 0:42:23.160,0:42:27.119 I'm not the alpha and omega here. I can describe my own experience and what 0:42:27.119,0:42:32.599 I saw from my own experience, but how he feels about his life at this 0:42:32.599,0:42:37.280 moment, how he feels about different situations. Well, there are situations, for example, 0:42:37.280,0:42:41.440 where people, specifically in this attitude, approach a person in 0:42:41.440,0:42:45.839 a wheelchair, someone with an intellectual disability, unable to assess 0:42:45.839,0:42:52.280 what's happening around them, from behind, touching them with such a desire to establish 0:42:52.280,0:42:56.160 contact. Oh, I like you so much, and now I have to hug you. 0:42:56.160,0:43:00.760 Suddenly, right? Where Jan panics and starts screaming, right? These are 0:43:00.760,0:43:03.960 very small things, where I have to say something, but not from behind, 0:43:03.960,0:43:08.720 I'm begging, well, not from the front. And first, perhaps say, "Come, let me say hello, 0:43:08.720,0:43:12.839 " or give some kind of sign, but because the person is in a wheelchair and can't 0:43:12.839,0:43:16.359 react, then it's okay to, for example, approach from behind, touch them on 0:43:16.359,0:43:20.040 the shoulder, say something, and simply scare them. No, 0:43:20.040,0:43:24.359 it's not allowed. Absolutely not allowed. Yes, here it's like crossing some 0:43:24.359,0:43:28.760 distance, some personal sphere. We talked about these things, and in two 0:43:28.760,0:43:31.599 weeks I'll have the pleasure of participating in the finale of this 0:43:31.599,0:43:37.760 project, and it was also a matter of commitment, both from the books and from me, to see something 0:43:37.760,0:43:42.440 new emerge, at least in this company. It's great to hear that 0:43:42.440,0:43:46.960 such a document is being created, something like a guide , 0:43:46.960,0:43:50.319 and I understand it. On the one hand, a guide is a guide, 0:43:50.319,0:43:54.480 but on the other, there are days, and quite a few of those days, where 0:43:54.480,0:43:59.640 we have employees, leasing assistants, people from other companies. 0:43:59.640,0:44:02.880 If, for example, someone gets sick, you call the company and 0:44:02.880,0:44:06.880 someone comes in to replace someone permanently employed in that community. 0:44:06.880,0:44:10.200 Sometimes these are people who have already been there, often know everyone and know what's 0:44:10.200,0:44:13.920 going on, and sometimes they don't know anyone and know nothing, yet they 0:44:13.920,0:44:18.680 deal with people. For example, there's an autistic woman who 0:44:18.680,0:44:23.359 needs her own routines, and here, a lot depends on character and 0:44:23.359,0:44:26.680 simple, innate empathy, not necessarily on a piece of paper, because that 0:44:26.680,0:44:31.800 person will never see it. So theory is theory 0:44:31.800,0:44:35.960 , and practice is practice. I know that in Jan's journey I kind of showed a little bit of 0:44:35.960,0:44:40.839 the German world, of people with disabilities, and that that could also be 0:44:40.839,0:44:45.280 important. I could kind of show this German reality here, as 0:44:45.280,0:44:49.800 it could be, right? Because, after all, Germany is still here, through the terrible 0:44:49.800,0:44:54.240 experience of euthanasia, because of what happened during World War II 0:44:54.240,0:44:59.200 and before World War II, during the Second Reich, the attitude towards people with disabilities is 0:44:59.200,0:45:03.559 different. They treat the 0:45:03.559,0:45:08.800 mentally and physically ill and disabled very, very delicately. Because after what 0:45:08.800,0:45:13.960 happened here, well, there's no other way. The burden is so great and the memory 0:45:13.960,0:45:19.000 of these events is so strong that, uh, the Germans are trying to do everything to make 0:45:19.000,0:45:24.040 things better today, as if to atone for their guilt a little. Yes. Countries around the world 0:45:24.040,0:45:29.520 have signed the United Nations declaration, right? And by the way, 0:45:29.520,0:45:35.880 it's also being implemented here with a great delay, but 0:45:35.880,0:45:39.440 it still seems much, much better to me. It is also a blessing in disguise 0:45:39.440,0:45:44.040 that we are here, that we are here with Jan in Berlin, because I am perfectly 0:45:44.040,0:45:50.319 aware of the situation of families with disabled children in Poland. 0:45:50.319,0:45:55.680 How worried everyone is about where their children will live someday 0:45:55.680,0:46:01.559 , when their parents run out of energy. Magda, for you, 0:46:01.559,0:46:06.599 this comparison of Polish and German social policy, policy towards people 0:46:06.599,0:46:11.319 with disabilities, was important, right? You refer to it 0:46:11.319,0:46:17.800 several times in your book? Yes, because Jan's path appeared before 0:46:17.800,0:46:22.720 all these demands. Their face was Agnieszka Szpila. The right to care 0:46:22.720,0:46:28.400 in general, right, to personal assistance, to 0:46:28.400,0:46:32.720 assisted living. It seems like a thing of the future. 0:46:32.720,0:46:36.599 But it really was so that thanks to your book, I could 0:46:36.599,0:46:40.920 imagine what one could think, what one could dream of. And now you said to 0:46:40.920,0:46:44.040 your friends from Szczecin, I realized that it's still, 0:46:44.040,0:46:48.040 you know, in terms of private ventures, right? Someone has 0:46:48.040,0:46:51.240 an apartment there, someone will pay for a nurse, right? Someone has a grandmother's apartment 0:46:51.240,0:46:55.760 , some cooperatives are being formed, but they don't have 0:46:55.760,0:47:00.359 state support. As I understand it, this cooperative, my husband, 0:47:00.359,0:47:06.280 is kind of subsidized. Well, we're very, very far away here for now. I've 0:47:06.280,0:47:10.280 been observing various associations that offer 0:47:10.280,0:47:14.559 respite care, even in social settings, and it seems to me that it's literally a struggle to 0:47:14.559,0:47:19.520 breathe, a two-week camp for this person with a disability, 0:47:19.520,0:47:23.839 so the family can rest, right? Most often, there are also 0:47:23.839,0:47:28.119 combined camps, where everyone goes, but at least for a few hours, parents 0:47:28.119,0:47:31.960 can, I don't know, just get away, have a coffee, 0:47:31.960,0:47:35.920 while someone else takes care of the child. So for me, it was, on the one hand 0:47:35.920,0:47:41.079 , a kind of role model, and on the other, of course, a sting that Poland 0:47:41.079,0:47:46.040 is still so far from this, and now that you've mentioned 0:47:46.040,0:47:49.960 the roots of this, it's silly to say so, but I thought to myself that Poles 0:47:49.960,0:47:54.800 haven't learned their lesson, haven't learned the lesson of empathy, gentleness, but 0:47:54.800,0:48:00.960 also a kind of commitment to support, and that this will continue, right? Because 0:48:00.960,0:48:03.680 all these demands for respite care, I have the impression that it 0:48:03.680,0:48:09.319 's still treated as some kind of extravagance for the general public. 0:48:09.319,0:48:12.440 It's also interesting that I hear people saying that we're 0:48:12.440,0:48:16.160 too poor, yes, as a country, as a society, which doesn't seem 0:48:16.160,0:48:20.680 to bother people reading that Poland has almost caught up, or is catching up, with GDP. 0:48:20.680,0:48:26.400 We know well that GDP isn't a measure of everything, and that GDP can 0:48:26.400,0:48:31.640 be distributed differently, but I still feel a twinge of regret that after five 0:48:31.640,0:48:34.760 years, at least people, you know, have read what they can demand. 0:48:34.760,0:48:38.240 However, there's still a long way from demanding to concrete solutions 0:48:38.240,0:48:43.280 . The reform of this system has been underway for several years. Now 0:48:43.280,0:48:48.079 , it's finally written into law, so to speak, that a person with a disability has 0:48:48.079,0:48:53.280 the right to choose a caregiver, and it can be a family member, but it doesn't have to be. 0:48:53.280,0:48:57.640 Right? This long-term situation has meant that women are often 0:48:57.640,0:49:02.880 tied to this type of care work for 20 or 30 years, and even if 0:49:02.880,0:49:06.960 a window of opportunity arises, they are unable to take advantage of it because they 0:49:06.960,0:49:11.839 have nothing to return to. Yes, and they treat it as if it were a right of choice, yes, for 0:49:11.839,0:49:16.400 a disabled person. In turn, it's an attack on their means of support, 0:49:16.400,0:49:22.440 right? Because it was tied together in such an unhealthy way, but at least 0:49:22.440,0:49:28.280 it provided the family, the couple, the disabled person, and their caregiver 0:49:28.280,0:49:33.040 with some kind of 0:49:33.040,0:49:38.079 economic stability, even if very limited. So really, when these 0:49:38.079,0:49:41.839 activist themes come up, I have to say that I very quickly experienced, you know, 0:49:41.839,0:49:46.400 intellectual burnout at the level of the 0:49:46.400,0:49:51.480 inability to meet these demands and claims, and that 0:49:51.480,0:49:55.400 sometimes I get absorbed in the current needs 0:49:55.400,0:49:59.720 of Emil, who is growing, in good shape, but of course now 0:49:59.720,0:50:03.640 he's completely consciously starting to struggle, you know, with exclusion, with what 0:50:03.640,0:50:07.839 I described, as his guardian, as his caregiver. He's entering his 0:50:07.839,0:50:14.920 teenage years, and I know he's suffering. Was it difficult to find a publisher for your 0:50:14.920,0:50:20.160 narratives? Did you encounter, for example, the message that 0:50:20.160,0:50:24.720 For example, isn't this the time for such narratives, or is there no 0:50:24.720,0:50:29.599 space for them in the book market? I think I succeeded at the fair. I have 0:50:29.599,0:50:33.760 the impression that your books were also published in black, I won't greet 0:50:33.760,0:50:39.520 you on the street, researchers and people with disabilities. That slogan "You can 0:50:39.520,0:50:43.920 always play the blind card" became a catchphrase 0:50:43.920,0:50:48.839 at our house, right? I think I managed to ride the wave you 0:50:48.839,0:50:55.240 generated. I was also in reportage school back then, and a few of my larger pieces were published 0:50:55.240,0:50:59.200 . I landed a spot in that 0:50:59.200,0:51:02.480 biweekly magazine there. As an editor, you know, I had some 0:51:02.480,0:51:08.000 fixed ideas about where I wanted to publish, both in magazines and 0:51:08.000,0:51:11.440 publishing houses. But I also have to say that, just like in your case, 0:51:11.440,0:51:16.319 a certain relationship with Beata Stasińska, for me, a semi-friendly relationship with a strong personality worked 0:51:16.319,0:51:22.079 . Małgosia Szczurek, Przemek, and Magda 0:51:22.079,0:51:28.160 have known each other for years. They also knew my situation, they also supported me, and I think 0:51:28.160,0:51:33.839 I got this agenda from them precisely because they also observed our 0:51:33.839,0:51:39.440 struggle, and then perhaps our growth, if that's even 0:51:39.440,0:51:43.680 possible in such a situation. Beata Stasińska is a bit older than me, 0:51:43.680,0:51:47.599 so she's the guru of all these editors, people who 0:51:47.599,0:51:51.720 wanted to shape this debate somehow. No, not just according to what 0:51:51.720,0:51:57.720 readers need, but what we as publishers should 0:51:57.720,0:52:01.319 offer readers. And when I think about this 0:52:01.319,0:52:06.720 semi-private thread, I know that the author, I won't just greet you on the street, also 0:52:06.720,0:52:12.200 attended Monika Sznajderman's writing workshops. The beginning of the book was 0:52:12.200,0:52:23.500 a text, uh, that was written there. [Music] 0:52:28.480,0:52:33.160 We've prepared three more questions that we'd like to ask 0:52:33.160,0:52:37.240 all the guests of this podcast series, which is organized under the theme of 0:52:37.240,0:52:41.079 disability and engagement. And the first of these questions addressed to 0:52:41.079,0:52:45.400 you, Dorota, what event related to the disability rights movement 0:52:45.400,0:52:49.520 do you consider important? I think it's precisely what 0:52:49.520,0:52:53.599 Magdalena was talking about—the fact that more books have appeared on this topic, both 0:52:53.599,0:53:01.040 by people with disabilities and their parents, as well as the series "Mothers of Penguins," 0:53:01.040,0:53:04.599 which is on Netflix and can be watched worldwide 0:53:04.599,0:53:10.559 . The French are making excellent 0:53:10.559,0:53:17.559 films on this topic, for example, and the fact that disability is being accepted as 0:53:17.559,0:53:23.119 a normal part of life, so that the stigma of abnormality is removed, that something 0:53:23.119,0:53:30.920 is abnormal, but it becomes a full-fledged part of the narrative about 0:53:30.920,0:53:34.400 our human experiences. I think this is very, very 0:53:34.400,0:53:40.240 important. And when it comes to changes, they are different in Poland and Germany. 0:53:40.240,0:53:44.240 I don't want to get into too much detail here either. Inclusion is definitely 0:53:44.240,0:53:50.040 an extremely important topic that should be pursued now, right? 0:53:50.040,0:53:55.400 That is, people with disabilities participating in normal 0:53:55.400,0:54:00.599 social life, right? Theaters, discos, I don't know, any other places where 0:54:00.599,0:54:04.640 people with disabilities have the right to appear and have the right 0:54:04.640,0:54:08.440 to participate. Transportation, yes, that should be adapted, 0:54:08.440,0:54:11.400 elevators. What do you think is missing in 0:54:11.400,0:54:15.040 the contemporary narrative about disability? The voices of people 0:54:15.040,0:54:19.640 with disabilities are missing. I noticed this during the workshops I attended 0:54:19.640,0:54:26.440 at Cooperative Mch. How important it was to listen to people living 0:54:26.440,0:54:30.119 in need of assistance on a daily basis, those in wheelchairs, 0:54:30.119,0:54:34.960 dependent on the care of others, who were able to talk about their 0:54:34.960,0:54:39.599 positive and negative experiences and their expectations. And 0:54:39.599,0:54:46.400 I believe that it's not just us, people who are relatively healthy, 0:54:46.400,0:54:51.920 moving on their own and speaking with their own voices, that we 0:54:51.920,0:54:55.280 should not only speak out about the needs of people with disabilities, 0:54:55.280,0:54:58.880 but that they should be at the forefront. So, we are creating 0:54:58.880,0:55:03.760 a bridge at the moment, we are 0:55:03.760,0:55:08.040 just temporary guides, but it's not about us; 0:55:08.040,0:55:11.920 it's about those people who have to share their own experiences, and 0:55:11.920,0:55:16.480 that's not enough for me. Magda, so I'd like to address these three questions to you as well. 0:55:16.480,0:55:21.079 Quick questions. What event related to the disability rights movement 0:55:21.079,0:55:25.760 do you consider important? Despite all this slow 0:55:25.760,0:55:31.200 progress, though, I mean the constant reminder that we have a commitment to 0:55:31.200,0:55:37.319 introduce personal assistance and respite care. So I think 0:55:37.319,0:55:41.599 these changes are slowly happening. This judicial reform, 0:55:41.599,0:55:46.000 which I understand had to start with, because if a person with 0:55:46.000,0:55:50.240 a disability doesn't actually have a legal personality that allows 0:55:50.240,0:55:54.520 them to choose, then it's difficult for further changes like 0:55:54.520,0:56:00.200 independent living or choosing an assistant to happen. These 0:56:00.200,0:56:04.640 changes, although slow, are noticeable, and it seems to me that over the past eight 0:56:04.640,0:56:09.480 years, right? From the protests of people with disabilities to the beginning of work 0:56:09.480,0:56:14.079 on changing the laws, including the provision, and now the continuation. Well, something is heading in the right 0:56:14.079,0:56:18.640 direction. Of course, it will now surely turn out that if more 0:56:18.640,0:56:21.119 military spending is needed, it will have to be less for people with 0:56:21.119,0:56:24.839 disabilities. It's true that the blanket is always too short, and 0:56:24.839,0:56:30.079 entrepreneurs have to make it easier for them because they're the ones who provide us with jobs, right? And they 0:56:30.079,0:56:34.000 care about the GDP, which we then have to divide. So I'm simply 0:56:34.000,0:56:38.079 tired of these explanations. I once 0:56:38.079,0:56:42.960 said in interviews that instead of rebuilding the Saxon Palace, we could allocate that money 0:56:42.960,0:56:46.200 to the independence of people with disabilities. Now we don't know 0:56:46.200,0:56:51.119 what will happen with the Saxon Palace. It seems like this is one of the few ideas 0:56:51.119,0:56:56.440 the current government inherited from the previous one, but the cost seems considerable, so 0:56:56.440,0:57:02.079 I think that if there's anything that stumbles our activism, it's the fact 0:57:02.079,0:57:07.359 that we keep returning to the same places and being stopped by the same 0:57:07.359,0:57:13.520 stories, and that people get tired of it. I'm observing the passage 0:57:13.520,0:57:19.240 of time, watching Emil grow, watching his siblings grow, and I'm starting 0:57:19.240,0:57:22.599 to lose hope that this is something that will happen when he reaches 0:57:22.599,0:57:26.520 adulthood. It seems to me that so many things will still remain 0:57:26.520,0:57:31.720 private, at the discretion of what the family does for their loved ones, 0:57:31.720,0:57:35.839 as if they have the resources. The second question in this series: What 0:57:35.839,0:57:39.480 do you think is missing from the contemporary narrative about disability? 0:57:39.480,0:57:43.039 I also thought, as Dorota said, that there 0:57:43.039,0:57:48.640 aren't enough voices of people writing, right, in terms of books and publications. But I also 0:57:48.640,0:57:53.400 thought that I'm observing large and, 0:57:53.400,0:57:58.640 I would say, very bold, interesting, and open profiles of people with 0:57:58.640,0:58:03.520 disabilities on social media. I'm thinking about Life on Wheels, and I'm also thinking about Niepełnosprytna. 0:58:03.520,0:58:07.079 It's like these are people who speak their own voice, even if, in 0:58:07.079,0:58:12.640 Wojtek's case, it's difficult. But I think that this huge community 0:58:12.640,0:58:17.960 that follows them needs to change somehow. Right? If the reach of such people 0:58:17.960,0:58:24.160 is simply thousands, tens of thousands, then that means there's 0:58:24.160,0:58:29.240 a demand for it, right? That it goes beyond that group of 0:58:29.240,0:58:33.200 mothers, children with disabilities, people with disabilities, 0:58:33.200,0:58:39.319 I don't know, activists. But even if it's, right, some 0:58:39.319,0:58:46.280 kind of voyeurism, still that inspirational porn the author wrote about— 0:58:46.280,0:58:50.440 I won't say hello to you on the street—it's still true. If 0:58:50.440,0:58:55.480 someone is observing these people, they have to learn something from them. 0:58:55.480,0:59:01.319 And one last question, we'd like to ask our podcast guests, and 0:59:01.319,0:59:07.079 through this, we'll also create a catalog of dreams for the future and changes 0:59:07.079,0:59:12.720 that could be realized in the future. What kind of social change 0:59:12.720,0:59:16.079 do you dream of? So, in addition to what we've already 0:59:16.079,0:59:20.599 discussed, the truth is the right to independence, to independent 0:59:20.599,0:59:25.880 living, the right to separate families with disabilities from adults 0:59:25.880,0:59:30.079 with disabilities, just like in Dorota's case. It's true that you can 0:59:30.079,0:59:34.400 actively participate in your children's lives, but it's not forced, it's not 0:59:34.400,0:59:40.280 that 24-hour care that's exhausting, that robs you 0:59:40.280,0:59:46.839 of your strength and dignity, and reduces you to a caring role, 0:59:46.839,0:59:50.400 yes, a caregiver for a person with a disability. From 0:59:50.400,0:59:56.599 my own and Emil's perspective, I still want more understanding, empathy, and inclusion. 0:59:56.599,1:00:01.160 Which isn't just about the Pope. Yes, because of course, schools 1:00:01.160,1:00:05.760 are obligated to accept children with disabilities. However, I wrote 1:00:05.760,1:00:10.520 about this recently: if there's no leader in the school, no one 1:00:10.520,1:00:16.880 with authority and a desire to 1:00:16.880,1:00:22.960 implement true integration, and often there isn't, it 1:00:22.960,1:00:28.839 's actually very easy to take advantage of various institutional obstacles, not 1:00:28.839,1:00:32.760 to admit the child, not to ensure they feel comfortable in such 1:00:32.760,1:00:36.880 a space. In Poland, this simply means that parents of children with 1:00:36.880,1:00:42.640 disabilities—who, it's unclear whether they should be 1:00:42.640,1:00:45.760 exclusively in a special school, which ultimately should be 1:00:45.760,1:00:51.400 eliminated, but whether they can cope, as they say, in a mainstream school— 1:00:51.400,1:00:56.079 it's unclear, but whether they have to be in a school for children with disabilities— 1:00:56.079,1:01:01.760 suddenly it turns out there's no good place for them, or that 1:01:01.760,1:01:05.920 they have to pay a lot of money for it. This means that 1:01:05.920,1:01:10.319 life is very difficult for parents with disabilities. That means they have to 1:01:10.319,1:01:15.680 pay extra to find a place in some school outside the system, 1:01:15.680,1:01:23.240 a forest school, a cloud of democracy, a Montessori school, right? I've often heard 1:01:23.240,1:01:26.599 the not-so-nice term that these schools are simply storage facilities 1:01:26.599,1:01:33.280 for children with problems. This is, of course, a criticism, that 1:01:33.280,1:01:38.119 even parents who aren't particularly well-off are willing 1:01:38.119,1:01:43.079 to fork out, to scrounge up enormous resources to ensure that this child receives 1:01:43.079,1:01:48.960 the best possible care, so that they aren't 1:01:48.960,1:01:53.520 removed from the mainstream school into thin air, but are able to build a 1:01:53.520,1:01:57.039 community. I'm not just thinking about children with 1:01:57.039,1:02:02.119 physical disabilities, I'm also thinking about neurodiverse children. 1:02:02.119,1:02:07.880 It's as if there's constant social resistance to 1:02:07.880,1:02:13.240 this integration actually happening. And at first, I thought, when the Law and Justice 1:02:13.240,1:02:17.119 party (PiS) was in power, that it was the fault of the ruling party, those Przemysław Czarnkóws and 1:02:17.119,1:02:21.559 Barbara Nowaks from Krakow, who said that children with disabilities 1:02:21.559,1:02:25.200 belonged in special schools, period. But then I thought that their 1:02:25.200,1:02:29.720 popularity stemmed from the fact that most people think alike, 1:02:29.720,1:02:36.440 so much so that they prefer to vote for the way things were. Yes, they don't want 1:02:36.440,1:02:42.680 change. They think the same way, just like the conservative part of the political scene, 1:02:42.680,1:02:48.200 and the conservative part of society. So I guess that wasn't 1:02:48.200,1:02:52.880 a short answer, because there's a lot of resentment here, right? But I have the impression 1:02:52.880,1:02:57.240 that this resistance to institutional change 1:02:57.240,1:03:02.799 also stems from the fact that there's actually general social resistance to the 1:03:02.799,1:03:06.440 widespread acceptance of people with disabilities in 1:03:06.440,1:03:11.520 public spaces. Thank you both so much for answering these questions. I 1:03:11.520,1:03:16.400 mean, Dorota and you for the entire conversation. Thank you so much. I'm very glad 1:03:16.400,1:03:22.559 once again to have had the opportunity to talk with you, and for you, for 1:03:22.559,1:03:26.880 engaged Polish studies. Thank you. Thank you. Bye. Thank you. See you soon. 1:03:26.880,1:03:30.520 See you soon. 1:03:31.760,1:03:36.000 The Engaged Polish Studies podcast series was produced as part of the project 1:03:36.000,1:03:40.960 "Polish Studies and the Challenges of the Modern World." Co-financed from the state budget 1:03:40.960,1:03:45.079 under the Minister of Education and Science's Science for 1:03:45.079,1:03:49.160 Society 2 program. The project number is provided in the description. 1:03:49.160,1:03:53.520 We invite you to listen to subsequent episodes available on 1:03:53.520,1:03:59.680 Spraker, Spotify, and YouTube, as well as in the online Polish studies bulletin. 1:03:59.680,1:04:02.839 See you there. 1:04:02.860,1:04:07.679 [Music]