Past Event I Belonging for people with profound intellectual and multiple disabilities – Online book launch

Abstract art, Johanna laying in bed with family Oscar and Bethan Mort

People with profound intellectual and multiple disabilities have a right to be included in society under the UN Convention on the Rights of Persons with Disabilities. Yet, they remain one of the most hidden and excluded populations. This has become especially obvious during the COVID-19 crisis.

This webinar was a virtual book launch of a book about what belonging means for this group of people. The book showcases important developments in belonging - in education, in research and in communities. Contributing authors in this edited book will share the key messages from their chapters, as well as what they learned from being involved in the exciting journey of developing this much needed book.

The below video includes a discussion about how belonging can be enhanced for people with profound disabilities and about what it means to belong.

Presented by the UNSW Disability Innovation Institute and the Centre for Research in Inclusion, University of Southampton

Soundcloud

Transcript

Belonging for people with profound intellectual and multiple disabilities – Online book launch

Monday 6 July I 4 pm Australia I 7 am United Kingdom

 

Jackie Leach Scully 

Welcome. Welcome to the online book launch, "Belonging for people with profound intellectual and multiple disabilities. This event is presented by the Disability Innovation Institute at the University of New South Wales, Australia, and the Centre for Research Inclusion, University of Southampton UK. And I am Jacqueline Scully, Director of the DIIU and Professor of Bioethics at UNSW. I would like to start with the Acknowledgement of Country that is customary in Australia. I would like to acknowledge the Wangal people who are the Traditional Custodians of the land from which I am speaking to you now. I would also like to acknowledge the traditional custodians of the land that the UNSW Kensington campus sits on, the Gadigal people and Bedgegal people. I pay my respects to the Elders past, present and future, for they hold the memories, traditions, culture and hopes of Indigenous Australia. I would also like to extend that acknowledgement to all Indigenous people that are present today. As we share our knowledge, teaching, learning, and research practices across our Universities we also pay respect to the knowledge embedded forever within the Aboriginal Custodianship of Country.

If audience members have any questions during the event, or if anyone is having any difficulty and cannot use the chat function, please email us or if necessary, please use the number below. Please only use this number if absolutely required so it is available for those who need it. The phone number is 02 9585 9114. For closed captions button at the far-right bottom. You will be able to turn this on and off. During the audience Q and A, which will be conducted via YouTube ‘Live chat’ at the top right corner if you are on a web browser. If you are on a mobile device this is directly under the video. Please post your questions here and they will be passed on to the presenters.

 

Please feel free to join the conversation online. You will see the twitter handles here on the slide and for those listening they are

 @JLSbioethics

@IvaStrnadova

@DisabilityUNSW

@m_nind

@unisouthampton

 #UNSW

#Belongingbooklaunch. All one word.

And now I want to say a couple of things about the Disability Innovation Institute. The DIIU is a world-first initiative. It focuses on disability research, education, and knowledge exchange. We pride ourselves on undertaking work that is radically inclusive, and that crosses disciplinary boundaries. Our approach is to see disability not as a problem to be solved, but as an integral part of the human condition to be encountered and engaged with rather than feared. I am delighted to be here to launch an edited collection that has a focus on belonging for a group of people who are often pushed right up to and beyond the margins of society, and that's people with profound intellectual and multiple disabilities. My own work has focused primarily on physical disability. And so, I am particularly curious to find out more about the context for people with intellectual disability and their families.

I am going to introduce our first two speakers. It is my great pleasure to introduce you to Iva Strnadová, who is Professor in Special Education and Disability Studies here at UNSW. And Academic Lead for Research and my valued colleague at DIIU. Her research aims to contribute to better understanding and the improvement of the life experiences of people with disabilities, especially those most marginalised, such as people with intellectual disabilities. Her work combines research with advocacy, building on supporting self-determination, (including self-advocacy) of people with intellectual disabilities, and is grounded in an innovative inclusive research approach in which people with intellectual disabilities are included in the role of researcher. She has a particular research interest in the wellbeing of people with developmental disabilities, intellectual disabilities and autism and their families over the lifespan.

Melanie Nind is Professor of Education at the University of Southampton, UK. She is the Director of the Centre for Research and Inclusion, and Co-Director of the National Centre for Research Methods. Melanie is an author and Editor of the British Journal of Learning Disabilities, and the Bloomsbury Research Methods for Education Book Series. Her own books include the highly influential, Access to Communication, Routledge. Melanie is particularly well known for her work on intensive interaction on inclusive education and inclusive research. Her research includes the study of quality and capacity building and inclusive research with people with learning intellectual disabilities, and most recently of how adults with learning disabilities are learning a process of transforming social care in the context of personalization. And now it's my great pleasure to hand over to Iva and Mel.

Iva Strnadová

Hi, everybody, we are so excited that you are here and joining us at the book launch. Jackie, thank you so much for the lovely introduction. Before I start to talk, I would also like to acknowledge the traditional custodians of the land that I currently reside on, which are the Cammeregal people. I pay my respects to the Elders past, present and future for they hold the memories, traditions, culture, and hopes of Indigenous Australia. Thank you to everybody who is joining us here for this book launch. Mel and I will tell you what the book is about, which really reflects what we set out to do and why we felt the book was needed. We tried to do three key things with this book. Firstly, we aimed to bring people with profound intellectual and multiple disabilities into the debates about inclusive education, inclusive research and really leading full lives as community members. This is in recognition that these are the children and adults last in the line to be included. When others with intellectual disabilities in the United Kingdom - learning disabilities. When self-advocacy has gone a long way to change the lives of people with intellectual disabilities, those with profound disabilities have been on the margins. The move to doing research inclusively. That is when people with intellectual disabilities are in the research and in the role of researchers as much as participants. This move resulted in the research being transformative for many people and all groups of people. But these were not people with profound disabilities. This is why this book is needed.

Secondly, we aimed to bring together in one volume, a body of work to show where the progress is being made. A 'can-do attitude' and worked example can go a long way in spreading good practice. The book provides accounts of recent, very important work that is happening, and that has been pushing the boundaries of inclusion. What we wanted to do is to share these and put them together in one place to increase their impact. Thirdly, Mel and I aim to explore what it means to belong and how the concept works if we put people with profound intellectual and multiple disabilities at the forefront of our thinking. Before I hand over to Mel, I would just like to make a quick note on language that we use. Probably all of you know, there is no perfect language. When we talk about disabilities, as every term becomes over time offensive and needs to be changed to better reflect what we know. This also applies to terminology relevant to people with profound intellectual and multiple disabilities. We decided to use this term after much deliberation among the authors. We acknowledge that other terms are being used as well. For example, people with high support needs, people with complex needs, and of course most familiar in the UK, people with profound and multiple learning disabilities. So, Mel. How did this book come about?

 

Melanie Nind  

Thank you, Iva, and thank you, Jackie, too, for the introduction. And everybody who's turned out today to hear this and listen to it afterwards. Thanks to those who would love to be here. So yeah, we will start off with the story and my story today is about how the book came about. And there were lots of things really, and it's hard to pick out one for the key reasons why Iva and I decided to get people together and create this book on belonging for people with profound intellectual, multiple disabilities. But one of the influences was the UK manifesto, Belong Manifesto. And this came from books beyond words and access all areas. And really, they launched it, just to get people talking about belonging and what belong meant and what it was like to belong if you have got learning disabilities. And we were discussing the Belong Manifesto at the social history of learning disabilities conference at the Open University in the UK. And you know that it's great, it does get you talking, but some of the things didn't feel like they involve people with profound disabilities very well. And so you know Iva and I and other people saying that if we're going to have this concept of belonging, then it has to be a concept that that works for everyone. Otherwise, it's not belonging. So that got us really thinking. And that same conference, Catherine De Haas and her daughter, Johanna De Haas were speaking and presenting (and this conference has always been an inclusive conference). But Catherine was the mother of Johanna and Johanna was living with profound intellectual disabilities. And they co-presented together with Catherine talking and Johanna interspersing with sounds and responses, and together, they kind of told a story that neither of them could have told on their own. And I think at that moment, you kind of think. Yes, this is ‘belonging’! This is belonging to this intellectual disability community. So that was influential.

Iva and I have also been reading the wonderful philosophers, Eva Feder Kittay and John Bauhaus. They make you think quite deeply about what it is to belong and what community is, and community connectedness is and family and all these things. And another thing that happened was that Iva came to speak at the University of Southampton to our Centre for Research in Inclusion, which was wonderful. She did a presentation on belonging. And it was very interesting that people who would not normally turn out to a presentation on inclusion came to a presentation on belonging. And so, it felt that in a way that concept was fresher and more had something to offer where maybe inclusion has got a bit sallied and tired. So those were the immediate things that led up to all of this. But, of course, Iva and I have got a long kind of backstory in this work. And for me, it dates to my early 20's my first teaching job in a long-stay hospital in the UK, where 800 people with learning disabilities were institutionalized. And I was working in the school with people who really presented with the most kind of extreme difficulties in learning, but also the most extreme life experiences as well. And that is where we began to develop intensive interaction and that really was just a reaching out a means of trying to combat the dehumanization of people with learning disabilities and to socially connect. So, I think ‘belonging’ work probably started a long way back. Before the idea of the book did. What about you Iva?

 

Iva Strnadová

Thank you, Mel. In my case, my interest in belonging started when while I was 17. And I started to work part-time in a group home for women with intellectual disabilities. It was really more small institution that was transforming into a group home. And I had the privilege of sharing a piece with these incredible women, and some of them had profound intellectual and multiple disabilities and with their families. And I have seen many struggles and injustices that these women and their families have had to face. And I also see that social inclusion and belonging is here to be the desired goal for them. So, this informed my research on belonging and people with intellectual disabilities. I would also actually like to talk about why we put belonging to the centre of our book. The sense of belonging is critical to each human being. It is one of our core needs and belonging can mean different things to different people. This has been discussed by different works of literature be it by scholars from the area of philosophy, sociology, or disability studies. Belonging is about relationships that we have with people. But it is also about places that we feel connected to and about feeling at home in a place or with a community. And it is also about our memories and our ability to share them. In a study that I conducted with Professor Jim Walmsley and Professor Kevin Johnson. We asked people with intellectual disabilities what belonging means to them? And they told us, besides all that I have now mentioned that essential to belonging is also the sense of being valued and having an opportunity to contribute in some way.

Now, Mel. How about the gap that this book fills?

 

Melanie Nind

Yes. It is limited literature, isn't it? Around profound and multiple learning disabilities, intellectual disabilities. Because it's a small group, a small community in a way. And I think we were not trying to solve everything with this book, we, you know, we know we were building on other people ideas. We wanted to inject some discussion around belonging, obviously. But also, to explore how far we'd push the boundaries, how far we'd gone. And I think that's really important. Because you know, at the time of, you know, another part of the story was me going around examining doctoral thesis in the UK. And the wonderful doctoral thesis of some of the people who are in the book actually. And that really made me think actually those people are doing far more to include people with profound disabilities than I did in my own PhD in a way. So, as well as filling a gap we wanted the book to give a voice to those people and to bring them together so that they could have more impact. And it is interesting that the book is already beginning to have impact. So one of the (somebody who's read it) Nathan Taylor, and I think you're here today Nathan. You said that in your school you are beginning to reorganize the curriculum and to put belonging at the centre of everything you do. And that is really exciting, and I definitely want to visit, please?!

 

Iva Strnadová   

Me too!

I would like to say a few words about the structure of the book. The contributions in this book are divided into three sections. And these look at, Belonging in Education. Belonging in Research and Belonging in Communities. And each section contains contributions from academic authors, as well as contributions of fellow travellers. Which is the term being used for people who support and advocate for people with profound intellectual and multiple disabilities. In whatever capacity be it, parents, siblings, support workers, neighbours, caring citizens. Now, how about the Author'

Melanie Nind

Okay, that's my job, introduce the Authors. And I've got my piece of paper here to make sure I don't forget anybody. You know, first of all, we would have loved to have done a book launch in a physical space and all got together and drink champagne and eat cake. And obviously, that was challenging with an international book, but the global pandemic has sorted that out for us and we're doing this book launch online. And that means you can't mingle and talk to all the authors and people. They can't talk to each other about their contributions. Nonetheless, the Authors are here for the chat and three of them will be presenting to you in in a moment. And we've got Ben Simmons who's done a chapter on 'Education' talking about the education section. Melaneia Warwick, talking about the 'Research' section and her chapter and Catherine De Haas talking about 'Belonging in the Community'. They are representing our three sections, but we've got other wonderful contributors. Michael Arthur-Kelly, bringing in Australia again but with his colleagues, Bea Meas and others in Europe. We have Jill Goodwin, who was one of the wonderful PhDs I examined. Her work on our installation as a way of promoting, of being in the moment. Debby Watson her work on 'Play' Noelle McCormack, Sheridan Forster, Liz Tilley and Sue Ledger. So really important authors to this book. But what they do together in their chapters is illustrate belonging in all different dimensions, not just education, research and community. We have got here talking about belonging in play, history, art, everyday life primarily. Belonging with others, belonging as part of communities and groups. But other authors that have shorter sections in the book but really important sections in the book are the family members. So, Shoshana Dreyfus, Hilra Vinha and Clare Palmer who wrote with Jan Walmsley. These were really important contributions because they weren't necessarily writing about pushing the boundaries in an academic sense. They were talking about the lived reality of belonging. And often I have to say, not belonging to them and their family members. And they provide an important kind of balance and reality check in the book. So, although we have this historical context of not belonging, these wonderful authors, help us to talk through how far we've got. So now it's time to hand over to some of those Authors. We've got presentations from Ben Simmons, Melaneia Warwick and Catherine De Haas.

 

Ben Simmons 

Hi there, my name is Ben Simmons. I am a Senior Lecturer at Bath Spa University in the UK. I am here to reflect on the meaning of belonging for children with the label, 'Profound and Multiple Learning Difficulties', or PMLD for short. Now PMLD is a term we use in the UK (United Kingdom), particularly in our education system. But our Australian colleagues may be more familiar with the term ‘Profound Intellectual and Multiple Disabilities’. Over the last thirty years, researchers have published lots of books and papers about the best way of educating children with PMLD. However, there is a noticeable lack of discussion about the meaning of 'Belonging'. Rather than wrestling with theories of belonging, researchers have traditionally focused on designing and evaluating things like classroom interventions. A lot of the literature is developmentally normative, meaning that children have been described as failing to reach early cognitive milestones, such as the ability to communicate with intent. The research is often ‘Individualist’, meaning that the problem is conceptualized at the level of a child. I.e. the child has a neurological impairment, which requires an intervention to improve so-called behavioural or cognitive functioning. Finally, the literature is segregationist, meaning that the research typically takes place in segregated settings such as special schools. Now, given the dominance of this medicalized focus in educational research is perhaps not surprising that we have failed to develop an account of belonging. And the contributions in this new book reposition children with PMLD. Not as objects of interventions and objects of research, but as experienced subjects. In other words, children with PMLD are positioned first and foremost as people. Most children with PMLD may not be able to speak in the conventional sense. Their life stories emerge in relation to others with whom they interact. And if we take it for granted that children with PMLD are people, then the meaning of belonging becomes relational, and it becomes experiential. It begins with lived experience and being with others. In philosophy, there is a concept called, 'being in the world' which strongly resonates with accounts of 'Belonging'. 'Being in the world' implies that human beings are always social. But they are born into a world of language, of history, of culture, of art, music and in the essence of human relations. However, some claim that children with PMLD may never develop formal communication. The concept of 'being in the world' implies that the interactions between children with PMLD and others will be influenced by the cultural and subcultural contexts that we are born into. Therefore, rather than assuming children lack social awareness, or that there is one correct way of interacting with children, i.e. a normative developmental model. Perhaps we need to think about how belonging is culturally relative. Meaning that different groups will have their own traditions, rituals, objects, meanings, modes of communication, forms of play, etc. And this means that 'belonging' is not something that can be prescribed but has to be understood in terms of culturally situated relationships and experiences. In concrete terms, this may be that different groups of friends play with children with PMLD in different ways. And what is most important here is the experience of ‘Self’ and others that this interaction brings.

Furthermore, the theories of 'belonging' presented in the education section of this book move us beyond the individualism of traditional educational research. And they draw our attention to the collective. The chapters point towards the shared agency, shared meanings, shared experiences, shared forms of personhood and shared voice. And these are new ways of thinking in the field of education for children with PMLD. Since in education we often focus on improving individuals. Our neoliberal education system emphasizes subject knowledge acquisition, and intellectual competition between individuals rather than community building. And where this is the case, the education children with PMLD seems to be an afterthought. Finally, I think the chapters make clear that belonging is not simply about geographical space. In education, there is a debate about whether special schools or mainstream schools are best for children with PMLD. But this debate is perhaps misguided. In Shoshana Dreyfus's chapter, she describes how her son Bodhi loved going to a special school and was loved by the school community. In my chapter, I described how two children with PMLD, Harry and Emma, were befriended by children in a mainstream school. Bodhi, Harry, and Emma's stories tell us something very important. For example that the experience of 'belonging' can cut across mainstream and specialist contexts. And this suggests that rather than an arguing about which physical space is appropriate for children with PMLD, we should be focusing our attention on the conditions that lead to a sense of 'belonging'. Be amazed at our colleagues who suggests a way forward here with their theory of knowingness. Which involves developing intuitive insights about children with PMLD through familiarity and reflexivity. Similarly, Jill Goodwin describes her art installation, 'The Golden Tent', and how this created novel ways of knowing and being with children with PMLD. What each of these chapters do is draw our attention to the dynamic emerging theories of 'belonging'. And I hope that the book will provide new and exciting directions for research and practice in the PMLD field. Thank you.

 

Melaneia Warwick

Hello, my name is Melaneia Warwick. I am speaking to you today from England in the United Kingdom. I am delighted to be able to talk to you all about this fantastic project. This amazing book that has been published very recently that we're launching to all our international colleagues today. I'm going to use the next few minutes to talk to you a little bit about my chapter in this book. But before I do that, I'd just like to say how delighted I am to be a part of this fantastic project. And I really hope that everybody who engages with it learns something and shares with us what they have learned and what their thoughts and reflections are. My chapter tries to understand what 'Belonging' looks like for people with profound intellectual and multiple disabilities in research. To understand this better I employed the arts. In particular photography. As a Visual Artist, I have seen the power of creative approaches in inclusion 'of', and variations 'in' the ways in which individuals and communities are able to share their experiences with others. What we know is that creative approaches can be democratic and inclusive. We believe creative expression to be inherently a good thing. We know that creativity can be fun. What my book chapter discusses is how creative approach taken by one of the participants in my study, how to uncover new ways of understanding their focus and intention. Or to put it another way, what was a meaningful engagement to them. I'd like to tell you the story of Sharon.

 

Take your mind back to the era of Princess Diana. You may well have images of this highly photographed woman in your mind. Who could forget the iconic Taj Mahal photographs for example? When I first met Sharon in the noisy dining room at Portsmouth. Despite the distracting clutter of crockery and cutlery, she is looking intently through a large coffee table book, which contains page after to page of lavish, high colour, glossy imagery. Occasionally, Sharon would point at a photograph and say, "Diana", and “book” with what I took to be tangible excitement. As I begin to conduct my research. I was told that Sharon should be discouraged from accessing the Dianna book. Because at 50 years old, it is too young for her. And anyway, she is too focused on it. She needs to do something else. I learned that despite being invited to undertake other activities, Sharon always returned to Diana. The issue was that my research was not about what others might think of Sharon's preferred activities. It was about what constituted meaningful engagement to Sharon. It was important that I try to understand what it was about the book that interested her. In official arts, we look for (among other things), symmetry and obstruction, pattern, and repetition. I wondered if there was a way of observing pattern or repetition in Sharon's interaction with the Diana book. And if so, how I might notice this without disturbing her? Sharon did not like a lot of people around her. She became shy, looking away and stopping her enthusiastic articulations. It seemed that an unobtrusive camera might be the best way to record interactions. So, we introduced Sharon to a GoPro that could be worn on a comfortable harness. GoPro cameras dismantle the need for technical competence. As they can simply be switched on and left to run or controlled remotely. And thereby, they enable the research participant to collect their own data and literally from their own perspective. Over a period of 13 weeks, Sharon did just that. It was clear that Sharon was choosing to point to particular book images and that the images therein had particular features. The images she was choosing had a characteristic palette of red, black and white. And where all close-ups of Diana's face or collages of her. This led to us understanding Sharon's activity. It was beyond simply reading, Shannon was selected and commenting on source material. And in this establishing a pattern of preference or systemic condensing, and therefore modification of the book seen from Shannon's perspective. I recognized her interaction with the book as editing. I learned about momentum and the ways in which we can creatively include people with profound intellectual and multiple disabilities in research to be open and ready to view, clarify and portray this participation as well as we can. In this, we are cooperating with people as their creative practices and approaches unfold in ways that we hope are meaningful to them. (Audio and video of images collage on screen)

 

Catherine De Haas 

The contribution to this book would not have been possible without the help of our daughter Johanna. Johanna lived with profound intellectual and multiple disabilities. She was a wheelchair user. She never learned to talk. She had real difficulty seeing things and people. And she had severe epilepsy. We're learning to live with the loss of Johanna's presence. She died in April 2019. Johanna, like other people with her disabilities, had a deep and extraordinary effect on the people who knew and loved her. She enabled people to think differently about themselves and others and what they value. This book is about belonging for people with disabilities like Johanna's. It was in part inspired by Johanna's contribution to the social history of learning disability conference, which is normally held in the Open University in the UK in July. She co-presented with me several times, expressing her thoughts on like verbal contribution with her facial expressions, body movements and vocalizations. Nobody could roll their eyes quite so well and eloquently as Johanna. I really miss this. During the Thirty-One years that she lived with us, I learned way more than I did as a Speech and Language Therapist. Or, from when I studied for my master’s in science at the University of Manchester in 2014. During Johanna's lifetime, we found new ways of belonging in our community. And the ninth chapter of this book, I use multiple voices to describe this experience. I start by asking other families with children with profound intellectual and multiple disabilities to describe their experience of living and pre the Covid-19 UK. In the second half of the chapter, I write about the research I did for my master's. I asked five people, including a child of eleven about their experience and making connections with Johanna. These people do not have profound disabilities in their families. Although people have individual reactions to being with people with disabilities, they can, over time through shared enjoy activities, form a give and take relationship with a person with disabilities like Johanna. In a post-Covid-19 world, I'd like to see a society where (with professional help) people with differences such as Johanna's are understood to be as valuable as anyone else, and where they can contribute their own gifts and strengths. People like her bring good to the world for their enjoyment of life, and ability to share joy through smiles and laughter and reciprocation of love and care. This enriches the people who know them. Johanna and I also contributed to the work done by Sue Ledger and Liz Tilly on Chapter Ten, which is about enabling people with profound intellectual and multiple disabilities to belong in public and community archives. Neither can be present. However, they helped me to write this account of our work. In that chapter, we argue that being part of history is a critical aspect of belonging in society. James Baldwin, Civil Rights Activist and Social Critic, understood the implications of having the past but no history. For too long, people with disabilities like Johanna's have also been missing from history.

Nowhere, is this starker than the absence of stories and artifacts from people with profound intellectual and multiple disabilities and their families and our public archives. The inclusive archive project, which Johanna and I contributed towards, built the case for why participation history and heritage matters to people like her. We discussed what made such participation difficult to achieve and identified the practical, ethical, and legal barriers we face. The research also involved working together to find solutions to these problems, drawing together expertise from people with intellectual disabilities and their families, archivists, legal experts, and health and social care professionals.

This led all of us to create a decision-making pathway to support people with profound intellectual and multiple disabilities to contribute to history. The Barrister we consulted on the project argued that helping people with profound intellectual and multiple disabilities to participate in public archives, and therefore, to be representative in the historical record was intimately tied to the notions of altruism, concern for others in the future, and thus belonging.

The pathway was trialled with Cherry who is an artist with profound intellectual and multiple disabilities. This was done with the support of her family. Cherry had experience of sharing her artwork at public exhibitions. A growing number of people with profound intellectual and multiple disabilities are now finding ways to express themselves and share their stories through participation in art space and story sharing projects. We hope our work will lead to more people like Cherry being able to deposit their stories in archives and being invited to take part in public collections and exhibitions. I have learned so much from being involved in this book. Iva and Mel were wonderful editors. Helping me to improve the clarity of my words. The draft edition of the book arrived at the start of lockdown. I've enjoyed reading it. And I have added to my knowledge of ways of working with people like Johanna. Some parts have been particularly helpful. I shared them with my friends who have children with profound intellectual and multiple disabilities. The Hanging Out program created by Sheridan Forster provided reassurance and encouragement to parents who have been juggling disturbed sleep, work for children with profound intellectual and multiple disabilities, and the rest of family life during the global pandemic. I was pleased to read more about the Passport to Play and Debby Watson's chapter. Johana and her directly employed care staff and I used the online version of the Passport to Play in her care plan. I do hope you decide to get a copy of the book and enjoy it as much as I did. There are so many nuggets of useful information and creative ideas within the pages.

 

Iva Strnadová

That was wonderful. And we would also like to highlight here that this book has been dedicated to Johanna because she has been such an inspiration to Mel and I.

 

Melanie Nind

Thank you. Yes, it is really good listening to the summaries of the chapters again, and I don't want to repeat the things that those authors have said. But I do want to link to some of the ideas that we have in Chapter Eleven. And I pick up my picture, my copy of the book now which I realize we have not flashed. But in Chapter Eleven, we tried to pull together some of these ideas and really trying to tease out what it means to ‘belong’. And I think when we are talking about ‘belonging’, we are talking about something that is a sense of being part of something, a sense of being connected, a sense of being at home here. And, you know, we thank the social geographers, the people like Edward Haller and Andrew Power, Sally Robinson, people who have really talked about welcoming communities and what does it feel to be? What is it like to feel at home somewhere? When we were talking about ‘belonging’, we talked about places where we feel we ‘belong’. There are conferences I go to and I kind of think these are not my people. They are not talking about my language. I don't feel that sense of belonging when I go to the Raising the Bar Conference in the UK. However, at the Improving the Standards for People with Profound Intellectual Disabilities I feel at home, these are my people. So there is something I think that all of these chapters, (although they're talking about belonging in different ways) they're always talking about relational belonging. They're always talking about this sense of ourselves in a place. And that doesn't preclude people with profound disabilities, they can still enjoy that kind of sense of, 'I feel at home' and 'I am comfortable here'. Anyway, I think we should get on to the discussion, shouldn't we?

 

Iva Strnadová

Mel. So I hope that we have been able to encourage you all to submit questions by the comment section on YouTube. And it looks like we have quite a few questions. So I want to go to the first question, and Colleen asks, "I wonder what my life's story would look like if treated as emerging in relation to those around me with my presence and non-verbal interaction being interpreted by others. Can you comment?

 

Melanie Nind

Okay, thank you. I would really recommend to you all to read Noelle McCormack's chapter in the book because she does 'life story' work with somebody with profound intellectual disabilities. And really shows us how life stories do unfold with others and we tell them with others. And you know, I would just want to point out the co-productive nature of all of our life stories. We only know who we are in the world and what our place is and how we feel about ourselves because of our relationships and interactions with other people. So, I think all of our life stories are co-produced. And I just think we have not done very well yet, up until now to really thinking about what that looks like when you have profound intellectual difficulties. But Noelle McCormack's chapter. I really, really do recommend you do read that chapter. You'd love it.

 

Iva Strnadová

Thank you, Mel. I completely agree. We have here another question. One of the attendees here has noted that we both link belonging to being 'valued'. The question is, “can we comment on the relationship between belonging and this sense of being valued?”

That was a very strong theme that came out from the study that I have mentioned. The majority of the people with intellectual disabilities, when they talked about 'belonging', they really want to contribute to society. They want to contribute to society beyond just you know, going to employment. They wanted to volunteer, they wanted to make a difference in the world. And due to their long term, I would say, 'lifelong experience' of bullying that they talked about and harassment and abuse. I don't think they had that much sense of being valued by others but yet they felt they can contribute so much. With some people, we talked to they had that sense of pride because they have an intellectual disability or in the UK learning disability. They can much better be sensitive and understand others. So, I think that was the connection between the belonging and feeling valued.

 

Melanie Nind 

Can I chip in?

 

Iva Strnadová 

Of course!

 

Melanie Nind

I am just thinking about that non verbally. And Sheridan Forster who is really good at helping us think about, 'We don't always know the world'. Joanna Grace is great on this as well. We don't always know the world in words. We inhabit a certain kind of or embody certain feelings. And I think for Johanna, she couldn't have told us in words like you were describing there Iva, what it means to be valued. But I am sure that Johanna inhabited and embodied her sense of being valued and welcomed and belonging.

 

Iva Strnadová

Absolutely.

I think also in a chapter that was written by the team when they talk about Cherry and her being a very valued member of society and a valued artist. I think that is another connection that we can make.

Let me move to another question that we have here. Jan Walmsley asks us, 'We think that using the acronym of PMLD enhances belonging'. And Rosemary Kayess also is saying that 'That the acronyms dehumanize people'.

So there is definitely a very strong feeling in the disability community around using acronyms, especially when it comes to people with intellectual disabilities and people with profound intellectual and multiple disabilities. We absolutely acknowledge that. In the same way, though we are respectful of some Author's decision to use the acronyms. And I really would like to say that all of us are well-intentioned and don't mean today to dehumanize anyone. But thank you for this comment.

 

Melanie Nind

Yeah, and just to say Chapter One is full of discussion about terminology.

 

Iva Strnadová

Oh, absolutely. And there is actually another comment, which is a question. Oh, it's not just one comment, there is a whole discussion happening here on whether labels are useful? Some of you say that they are necessary for categorization or for lobbying purposes. And some others say they are always eliminating. So...

 

Melanie Nind 

Iva, can I pick up on Annie Ferguson here?

 

Iva Strnadová 

Yes of course.

 

Melanie Nind 

Just to put this in the context of COVID and picks up on the concept of invisibility. Because I think invisibility is a good link in with the terminology isn't it? But in some ways, you know, we felt that we had to talk about profound intellectual and multiple disabilities and we had to use that language. Because without using it, that group of people are invisible to a lot of discussions about disability rights and people with learning disabilities in self-advocacy organisations. And I think it's really good that Clare Palmer and Jan Walmsley in the book raise the issue. They've never felt like Clare and her daughter with profound disabilities are very welcomed or have a good sense of belonging in self-advocacy groups. Because there is a real lack isn't there? And what we've seen during the pandemic and various lockdowns is self-advocacy groups coming into their own and providing huge amounts of support and communication to fellow people who are suddenly kind of isolated. But the whole COVID story for people with profound intellectual disabilities is really quite different. It isn't one of being connected online and discovering the wonders of zoom. It's a story of families being wrought apart. Real painful isolation and lack of understanding of what on earth is going on here. And, and for me, that just underlines that, you know, 'belonging' was important before COVID. And it will be really important after COVID. But COVID has kind of really emphasized some of this.

 

Iva Strnadová

Thank you, Mel. We have another comment here from Marie Delaney, who says, “belonging is also about 'mattering to others' and 'to know you matter”. And I could not agree more, Marie. Absolutely. And I think that we owe this as a society as many communities. Especially to people with profound intellectual or learning disabilities and their families. And I would like to then lead with another question that I think is really interrelated. But the question asks us, 'As an individual, how can I help others to value people that have disabilities in a world that many times over rejects them?” Do you want to take that one, Mel?

 

Melanie Nind

No, you can do that one. 

 

Iva Strnadová

Look, I think the core thing is that they are as valuable! And they deserve as much respect as any other person. I think it is Sheridan who discusses this in the book. In her chapter, how sometimes the first inclination of people who meet somebody with profound intellectual or multiple disabilities is rather not to engage. Because they are worried that they will not know how to do it properly. Sheridan really nicely unpacks how we can spend time together and engage in various ways. She explains how to be with that person in time and that place so you don't need to be afraid of people with profound intellectual and multiple disabilities. I think very often it's just being afraid that we might do something wrong or say something wrong or interact in a wrong way. Just try.

 

Melanie Nind

Yes, that comes across very strongly, doesn't it from the family accounts? This sense of, you know, 'just take your cue from me' if you like and, 'don't be afraid to interact with us'. And I think Jill Goodwin's poem as well, in her chapter really captures that discomfort that you feel when you don't know how to pitch your communication. You don't know how long to leave a pause. I'd also point out that concept that Michael Arthur-Kelly and his team use which is about 'knowingness'. Knowingness is a really nice concept in the book. Taking the time to kind of get to know what people's communications mean.

 

Iva Strnadová 

Mmm Yes. We have here another comment. And that is from Sheridan Foster, who asks, 'When Catherine spoke about Johanna. I don't know if a person with profound intellectual and multiple disabilities is belonging here right now. So I guess belonging needs to be meaningful. Can you discuss that?'

 

Melanie Nind 

Yes, this is the presence and absence thing, isn't it? So often people are absent and for good reason. So I wouldn't like to presume nobody's here. Perhaps people are watching with their people and family members.

 

Iva Strnadová

I completely agree.

 

Melanie Nind 

Yes, 'belonging' does need to be meaningful. But one of the nice things about the concept is that it isn't all about just the cat. What happens with inclusion is it gets binary, doesn't it? You're included, you're excluded. And then it gets into a physical presence, physical absence, and you get into a special school, mainstream school and all of this. Belonging for me is a bit more nuanced, a bit more subtle. So meaningful belonging, you can't kind of just box it up in quite such a neat way.

 

Iva Strnadová

Absolutely. We have a question from Nathan. Nathan Taylor is asking, 'How can our valuing and celebrating make a difference to change public policy?'

 

Melanie Nind

I'm not a policy person. Are you a policy person Iva?

 

Iva Strnadová 

Not Really. Let us think about that question Nathan and we will get back to you.

 

Okay, so I would like now to bring up one more question from Jan Walmsleyand then we will be wrapping up. Jan Walmsley who is one of the contributors to the book. Thank you, Jan for engaging. She's saying, 'I have yet to read the book. But I'm wondering if you address the abortion of people with profound disabilities and its implications for belonging?'.

 

I'm happy to start. I think this is absolutely a critical issue that has been brought up also by people with Down Syndrome. Because Down Syndrome can be diagnosed on or identified during the pregnancy. And many mothers terminate when expecting the child with Down Syndrome. I think it's a good parallel. But, then you have people with Down Syndrome advocating for this not to happen and not eliminating the population who can bring so much to the world. And this is a really, really difficult, difficult discussion. It definitely shows a lot about how we feel about disability and belonging to society. If such a condition is viewed as the reason for abortion. But at the same time, I really do not want to be judgmental towards the parents, because they are only looking at certain circumstances. And, you know, I'm not in the shoes of people who make such decisions. So, I think generally definitely. All right, Jen.

 

Melanie Nind 

But Janet isn't in the book. You're right. People are bound to bring up things that aren't in the book. And that isn't something we covered. And maybe when we read the chat afterwards. We will think Damn, 'I wish we'd put that in' and 'why didn't we cover that'. For You know this is only just the start of talking about 'belonging' for this group.

 

Iva Strnadová

Yes exactly and how exciting that this this presentation and book launch brought so much engagement and questions and brought up so many very difficult topics that we might not have an answer to. But definitely triggered more thinking, more research. Just more trying to make the 'belonging' for people with profound intellectual and multiple disabilities happen to become a reality. And I would also like to say how wonderful it is that we have such a global community here. We have people from many countries joining us for the book launch who are really interested in and who hopefully will contribute to what we are trying to do.

 

So to start wrapping up, I would like to bring up Michael Arthur-Kelly point that he's just written into the discussion which is, how amazing this experience has been and the value of the sharing and insights so far. And he recognizes in his comment the global nature of this community. So I think that is really important to acknowledge.

 

So, to wrap up, I would like to say thank you. Thank you all for joining us at this online book launch. We are super excited and happy that you have been here with us. I would also like to thank our awesome interpreters, Sean Sweeney and Della Bampton. I would like to highlight that the event has been recorded and this will be distributed to all of you who registered via Humanitix. Following today in the following accessible formats, it will be a transcript, audio recording, recording of PowerPoints and also an interpretation. So lot's to look forward to. And to stay up to date with more events and information please go to unsw.to/subscribedisability all in one word. Thank you so much, everyone for joining us.

 

Melanie Nind

Thank you!

 

Iva Strnadová

And have a lovely evening!

 

Melanie Nind 

And the Brits can have their breakfast now.

 

Iva Strnadová 

Absolutely, enjoy it! We hope you enjoyed and see you soon at similar events. Thank you!