Opening Session & Keynote by Dr.Vibha Krishnamurthy
Nikita: We will start this session with an invocation by Vidya Y, our co-founder of Vision Empower and also from the 2017 batch of IIITB. May I now request Vishnu to play the video.
Nikita: Hope is something that always keeps us moving and we started to hear about it from our children. Here is a short mashup featuring a group of lovely children from different parts of our country. May I now request Vishnu to play the video.
Nikita: Moving on now I request Professor Amit and Professor Bala to provide an overview of the EMPOWER conference. Dr. Amit Prakash is Associate Professor and convener of IIIT Bangalore’s center for accessibility in the Global South. The focus of his recent research and outreach efforts has been equity and inclusion on matters related to technology designs and policy choices. Dr. Bala Krishnan is a professor of computer science at IIT Delhi. Assisted, a laboratory and research group co-founded by him is involved in developing a number of assistive devices targeted towards mobility and education of the visually impaired. He has been a recipient of three national awards, ACM lifetime award, and recently, IIT Delhi’s lifetime award for his work in the disability space. May I now request Professor Amit to take over this session. Once again, a very warm welcome to everyone.
Prof Amit: Thank you, Nikita. And thank you to all the lovely children for a wonderful start to the session. On behalf of the program committee of Empower 2021 and on behalf of IIIT Bangalore. It’s a pleasure to welcome all of you here for the opening session of the third edition of the Assistive Technology Conference. Let me invite Professor Bala Krishnan to say a few words because he has been amongst the first few people in the country to be working on assistive technologies. And he has been the brain behind the conception of the Empower series of conferences. Professor Bala a few words from you.
Prof Bala: Thank you. Thank you for this invitation. Because a wonderful beginning and when all these children were singing, that we shall overcome, it was very emotional in terms of people like us who are working in their state technology space, clearly what we do is a very small part in the willpower that they have to be able to overcome the challenges that they face, we can only be a small facilitator, but clearly it comes from their own strengths, internal strengths, in terms of trying to overcome the challenges, just to talk a little bit about the background to empower. So, when I started working in the assistive technology space almost 14-15 years back, I was very lucky to get engaged and you know, interact with people from other institutions. Specifically, we had a long interaction with Sanit Prabharkar from IIT, Madras Prof Anupam Basu from IIT Kharagpur. Depehar Manocha of course, has been our mentor and inspiration from Saksham, Sam Paroferwala from XR CVC. And then later on with the people like Satish and Nish and so on. So, once these engagements started, we have been thinking about how do we sort of formalize it because we did see a lot of events and meetings, which were user focused, or they were essentially focused towards the rights of people with disability. But there was very little industry technology space, one exhibition had started very breakout, started one exhibition and just providing some type of a platform. But we thought that there should has to be focused event which actually focuses on a state technology. Of course, users are very important because you can’t do a state technology without users. But the focus of the conference was on technology, and how do we interact with users engage with users to find appropriate solutions, affordable solutions, which actually will work in our circumstances. So these interactions finally ended up in creating a con event and first event we did in 2018, in the month of October, and that was very successful. We also had both, you know, panelists exhibit, apart from technical paper presentations, keynotes, and so on. And this was followed by again, another event that we did in 2019, has a second COVID conference. So and then, of course, we wanted to go the conference around it was very clear that a lot more people have to be engaged in it if this conference has to actually acquire a certain purpose and status so that it becomes a focal point for people to discuss present, evolve new solutions. So I’m very happy that for Prof. Amit Prakash and his team took this lead. And we have had two events. Of course, the last one we just call the Conclave, because it was a one day event. But considering that these were in very difficult times, in terms of because physical meetings are not possible, keeping an interest alive in a particular event like this, where physical interaction has been considered to be essential in terms of engaging with people from different stakeholders. But still, whatever was possible in the online mode Mr. Amit Prakash and his team has done a wonderful job, and very happy that we have been able to keep this event alive for the last few years. And this time, of course, they are full-fledged conference with almost all the typical parts of the conference that one would imagine. So that has been the history of Emperor but I would really request that everybody who is attending this event, be engaged with us be engaged with the steering committee and the Organising Committee. And of course, we will formally announce at the end of it where the next event will happen. But now we want to hold it as an annual event roughly at the same time of the year. And move it around within the country so that there is a participation and visibility all around. Thanks again Amit and I will invite Amit back for presenting what is going to happen in this particular conference.
Prof Amit: Thank you. Thank you Professor Bala. So I’ll quickly talk about what we intend to do over the next two days and it’s actually heartening to see a very good response for this conference from across the world. In fact, we have participants today joining us from Bhutan, Indonesia and we have participants from Europe, North America, and definitely different parts of the country. So it’s very good to see all of you join in today, we would request you to as Professor Bala said, keep engaging with us keep engaging with all the sessions in the conference, and strengthening the assistive technology and accessibility space so that we can probably work along with some of these children and see that our societies become much, much more inclusive. So we had two workshops lined up yesterday. We had one on accessibility, the other one was on creating accessible STEM content. And I think many of you may have participated in those workshops. We also had this time in the conference, a student design challenge competition, and Dr. Akhila at NISH anchored did quite well. We had some very interesting ideas, and prototypes came up and were represented yesterday by the students. Today, we have a series of sessions right from 12 noon. So after this session, we have product demonstrations. There will be an exhibition space for the products tomorrow. And then we have sessions on looking at different aspects of technology, looking at different aspects of disabilities, and trying to see how we can work together to create accessible solutions and contribute to research that’s much more responsive and sensitive to the needs of the local sound. So, I would invite all of you to attend as many sessions as you may and benefit both from what is going on in the sessions and because of the presence, let the speakers and other participants benefit with the experience, the session link remains the same. So all the sessions, you can join using the same thing. And that’s something that we have done to ensure that there is less confusion. Alongside the conference. We also have a film festival running, and it’s on the theme of inclusion, and I’m sure you would have received details about the film festival. Whenever convenient I also invite you to enjoy some of the films on display. We’ll have the director of one of these films, Signs and Gestures, which is also audio described. She will be with us tomorrow evening. And she will talk about audio description, about her film and filmmaking. So thank you again everyone for joining, I’ll not take a lot of time. And we’ll move on to what we have planned for the day for this session. We have with us for this session Prof. Debbrata Das, who is the director of IIIT Bangalore. He will be talking to us for a few minutes. And then we have our keynote speaker Dr. Vibha Krishnamurti who will be delivering our keynote address. Professor Debbrata Das’ main areas of research are Medium Access Control Protocol for Energy Saving and quality of service for wireless access networks. He is also interested in Internet of Things, IP Multimedia Subsystems and Mobile Computing. Professor Das is a PIO and Nodal Officer of nature project under the national mission for
interdisciplinary cyber-physical systems in the area of advanced communication systems from BSP, government of India. He has been the PIO of multiple sponsored projects from Intel, Hewlett Packard Microsoft, Motorola research Nokia government of India, in the areas of this interest. Professor Das has more than 180 Peer Reviewed papers in different transactions, journals and international conferences. He and his wireless network team have contributed to the IEEE Wireless Broadband Standard. He is a fellow of IEEE, fellow of Indian Institute of Engineers and a senior member of IEEE. He serves on high level technical committees of multiple departments of government of India and government of Karnataka. It’s a pleasure to have you with us today. Dr. Das, may I request you to address all of us?
Prof Das: Thank you, Mr Prakash, for your kind introduction. Good morning and welcome to Empower 2021 conference. And it’s an extremely important area in my point of view, as Professor Balakrishnan said, I echo the same when those eight students sang, it was touching. My sincere thanks to the organising and the program committee members for making this conference grand and successful. Also, my thanks to Prof Amit Prakash and Dr. Manohar for inviting us for this inaugural session. And also the thanks to Prof. Balakrishnan and all the keynote speakers and panelists for their talks and discussions. And also congratulations to the authors for their papers. I’m sure all of us will learn a lot at this conference for an excellent cause, which is given in front of us. As IIIT Bangalore is concerned, contributions by his faculty members and students have been nominated and have received a lot of honors and recognitions in this direction. Because deployed to Bangalore is a research and innovation led Institute, which has been working very closely with other partners from the IT industry, governments, and policymakers, non-government organizations, disabled people’s organizations across the country to create and nurture an inclusive higher education and research ecosystem for persons with disabilities and advocate for mainstream technology design and development roles for them, which were previously considered generally out of reach for these kinds of people for technology and higher education. So IIITB’s role has multiple directions. One of them is inclusive universities in this IIIT Bangalore has worked with other higher education institutions in the country, including IITs and to create these alliances in 2019. IIIT Bangalore has been trying in science and technology, engineering, and mathematics, recording short STEM conferences and hosting this annual event since 2018. And organized jointly with other partners working in the area of accessibility. This event seeks to create greater awareness within the IT companies on the benefits of the diverse and inclusive projects of teams with the participation of persons with disabilities as core team members in this kind of conference as one of the criteria for this hackathon. IIITB has been regularly celebrating the global accessibility awareness day by organizing talks panel discussions for the design development, usability and related communities will shape and find an influence our world both in physical and digital space and deploy it we have been doing other events like 3-Day Inter School on theme towards an inclusive digital society setting an agenda for technology design, with the focus on the intersexuality and disability gender, class and organization in December 2018. There are multiple events and things that have been organized by IIITB and will continue to be in this direction. IIITB has not stopped at that, IIITB has also gone one step ahead, took a lot of risks but became very successful, which we saw just now in lighting up the lamp. As Vidya was another student and Matthew has been our student in the very well-designed course and popular one called MSc in digital society programs here in our campus. It has been attracting people with visual impairments since its launch in 2015. The curriculum design and pedagogical approaches are being adopted to make this Applied Technology Program conducive to its uptake by the community, which not many technology-oriented programs in the country are able to achieve. Without whom we saw shortly back in this inauguration, a blind girl was the topper of the first batch of MSc Digital Society. That is a big achievement
IIIT Bangalore has been actively encouraging entrepreneurship among persons with disabilities. Two of the start-ups currently incubated in IIITB’s Innovation Center, it is a vision empower and friends for the inclusion of persons with disabilities as their founders. Recently set up Research and Outreach Unit at IIIT Bangalore, which Professor Amit Prakash is heading, the Center for Accessibility in the Global South aims to research, rethink and respond to issues of invidious and some subtle forms of discrimination faced by the disability community. So this is going to be attended by over 200 persons in recent events. Thanks to all of your support from the industry and other academia to having this event successfully integrated with scanners. And that has been a very interesting achievements in also in our technology, in IIITB’s campus. I will only speak about a few that are multiple more out there. And in our campus, the faculty along with the students, and also the industry startup collaboration, we have developed a smart body attachment system for robotic exoskeleton to aid the physically disabled to walk on their own.
And then very interesting thing, which we do in Minister of Industry and Commerce, who visited our campus last month, which is an affordable refreshable Braille display to read text files, and present them in braille to the blind reader using it with refreshable tactile displays, such as a small box, you just push a PDF file into it through any USB or a connector. And you will and you can read the complete PDF file as it goes through those alphabets or the words it changes the release height and you can put your finger on other side and read the book simultaneously, at a very affordable cost and semi-automatic creation of tactile diagrams for images for helping the visually impaired in the visualization of understanding of mathematics and science diagram, one of the biggest challenges for the blind students to study the math and science because they cannot see those geometry and the diagrams. And so they’re inventing some interesting things so that they can read and visualize those math science diagrams. The Indian Sign Language synthesis project aims to convert what is spoken in public presentation to sign language’s animation similar to what real sign language interpreters group through. So we have been continuing in our campus with our faculty and students and startups and also with collaboration with the industry, government, and academia to succeed in this direction. Long way to go, we understand that but these steps will definitely make us one day successful. We need all of your corporations and make the centers one of the best in this country or across the globe. Wishing you a wonderful conference ahead and IIITB will work in this duration more and thanks to Prof Amit Prakas and the team and others to take the plan ahead. Thank you again and namaste.
Prof Amit: Thank you, thank you very much, Prof Das. Thank you for your supporting and reassuring words. I’m sure under your research tutorship under your guidance, we all would be able to contribute. So let’s move on. And it’s my pleasure to welcome our keynote speaker for this session. It’s very kind of Dr. Vibha Krishnamurthy to have agreed to come to the Assistive Technology Conference. And I thank Dr. Krishnamurthy and I thank my program committee colleague, Dr. Namita, for convincing her to speak at this conference. Dr. Vibha Krishnamurthy is a developmental pediatrician with over 20 years of experience in working with children with disabilities and their families in India, she trained in developmental pediatrics at Children’s Hospital in Boston, and founded the Umeed Child Development Center in 2001, where she is currently the executive director, Umeed is one of India’s leading not for profits that works with children with disabilities and their families. Vibha has led the team in its delivery of services, training, advocacy, and research in the field of child development and disability. Dr. Krishnamurthy serves as an expert on early childhood development and disability for the government of India, WHO, and UNICEF. She is also a board member and past president of the International developmental pediatrics association. So thank you very much for joining me over to you, doctor.
Dr. Krishnamurthy: Thank you so very much, Professor Amit and Namita for having me here. Contrary to what Amit says, I didn’t require so much convincing. The first thought that crossed my mind was, at least this is one conference that won’t have the tech glitches that I see in all the other conferences. So I’m super delighted to be here. And thank you also very special to our two lovely interpreters who are doing such a wonderful job. So the title of my talk is ‘Don’t Forget the Efforts’, and we’ll get to the efforts. But before I go there, I want to say a little bit about Umeed. The word Umeed means hope, in Hindi and Urdo. And also it turns out in many other languages, the picture I have here is of the Umeed center where I work. We are a center for children with developmental disabilities. And our vision is that all of them will be fully included and reach their maximum potential. Our center is something that I’m very attached to because our walls are painted by our children, our staff, all together. So here’s a colorful picture of what it looks like and one of the kids. Our team has 109 People at last count, and there are people from all walks of the profession. And also very much a part of it is a Family Resource Center, which is from my family. What we do is provide clinical services but we are also a center for training, research and advocacy. We are located in Mumbai in lower Parel if anybody wants to visit you are most welcome.
So I will begin with this picture. This picture is of the central square of Brussels. And the picture is of a visit in 1993 that I did to Brussels, I was visiting Amsterdam and I decided to do it and this picture even now when I look at it makes my heart rate go up and makes my stomach sink to the bottom. And this is because I got lost in the city. I have visual spatial difficulty or disability. And I struggle with places that are unfamiliar. Even places that are familiar for that matter, I can very easily get lost. Brussels was a city where I did not speak the language. They all spoke French. And I remember this frantic two and a half hours where I was turning around various corners, trying to talk to people trying to find my way back to the bus. And I just couldn’t. It was the most terrifying two hours of my life. And I thought to myself, I can never do this again. I can never ever travel to a foreign country where I don’t speak the language by myself ever again. It’s not possible. Now up to 2018, that’s me on the Great Wall of China. I went alone. I went to work didn’t speak a word of Chinese. I had the time of my life. And that happened because of GPS. It happened because of translation apps, which made that possible for me. And so that brings me to this quote by Mary Patratable, who I think many of you may have heard this quote, that for people without disabilities, technology makes things easier, right? Sure, you use GPS, and you can get around from one place to another much faster. But for people with disabilities, technology makes things possible. It made it possible for me as a person with a visual spatial challenge, to actually visit a foreign country where I did not speak the language and manage to go around that country without asking other people for help.
So then that brings us to the population at hand, the people I’m going to talk about today, what needs to become possible for a child with disability? For that matter, what needs to become possible for any child? Right? So before we delve into the efforts, I want to talk about what happens if I google assistive technology for children? What pops up is that four out of the five websites that come up, are all related to education. Right? How to make math possible, what is an app that makes STEM subjects easier? What makes reading easier? And yet, if I talk to you about children, and I asked you about your childhood, or your child’s childhood, when you think about your childhood, I think there are very few of you who are going to say, wow, I remember that fantastic biology lesson I had six standard, right? That’s not really what matters to us,actually . And part of the reason that this kind of thing pops up, you know, ways to make children make up for deficits in education and deficits in communication, etc, is because we are thinking about it as a deficit, because we are viewing the children as broken in some way and needing fixing. So the effort that I want us to avoid is thinking about children with disabilities, as children who need to be fixed. They don’t need to be fixed. They need the opportunities for what all children have the right to, and what we need as adults to make possible for them. And what are these, these are the efforts for all children. It’s about friends, it’s about family. It’s about fun. It’s about fitness, how you function in school and at play, and what your future looks like. And there’s one last F word which I’m going to tell you later. Now, I didn’t come up with this clever acronym. This was actually the work done by researchers at CanChild. Cantrell is an organization in Canada, as you might imagine, and it’s Dr. Peter Rosenbaum and his colleagues who developed this. And the whole idea was to flip it around and say, rather than thinking, well, these kids can’t speak as much, can’t see as much, can’t hear as much. So how are we going to bring them up or fill the gaps? Instead, we need to say, what can we as the environment that these children live in do to make sure that these kids have an opportunity to participate in things that matter to them in things like friends, family, fun, fitness, etc. Right. So this was really a way of looking at childhood and children through the same lens, irrespective of the kind of child that you are. So in this journey, when I started researching for the stock, I had a few consultants. And this picture actually is of my consultants. It’s a picture of a zoom call that I had with them before, which lasted a couple of hours. That’s me in the middle, and I want to introduce you to my expert consultants.
They are all young people who I have known for the last 10 to 20 years as my patients. They are all between the ages of 17 and 22. So they are closer to childhood than most of us are. The first one on the left is Sanket Gala. He is 22 years old. He has muscular dystrophy. He is a keen cricketer. And you’ll hear more about that. He is also doing his master’s in psychology and he intends to become a therapist. The next below him is a Arijit Patil. He is 17. He is visually impaired. He is in grade 11 Actually must have just gone into grade 12. He is interested in a number of subjects and actually most recently is scheduled to talk to our professionals at Umeed about technology. So you need to have him on your team. Next to the right of him is Aditya. Aditya is my guru. In many words, he’s very philosophical. He has autism. He is an engineering student. He is in his final year of engineering and is also a yoga teacher in his spare time, and right on top to the right of me is Darshana Ramgiri. She is 21 years old, she just graduated in psychology. She is actually an active blogger. She has a blog on travel and fashion. And she is a social entrepreneur, she makes jewelry and sells it. And her ambition is to become a fashion designer. And you’ll hear more about that later. So my question to my consultants was “guys I’m doing a talk for a bunch of people who are interested in assistive technology and assistive technology, it could be anything from a spoon that is adapted to a helmet to a wheelchair to software, it could be any of these things. So given that, could you tell me a little bit about how technology has played a role in your childhood?” And I just left that as an open-ended question. And then the four of them had a lively discussion, and I was just making notes. And I want to group their responses into the various influence.
So it was all about friends. When you and I think about school, we think about friends, and so do most of our children and so all the children with disabilities. So some kids said, you know what used to be really painful is that I needed somebody to come with me all the time to all my friend’s houses or when we would hand out. What my wheelchair made possible for me is that you know when all the kids would get together for Sunday for brunch in Bombay, we have Junior College in 11th and 12th. So on Sunday morning, all the young kids would get together for brunch and he had to have his mother or his father or his cousin, come with him. And he said finally because of my electronic wheelchair, I could go see my friends by myself. And that was a big thing.
What Darshana told me was that the access that social media has given her to friends who are like her from all over the world, and friends who encouraged her as she began her journey as a fashion blogger, and a travel blogger was a big deal. She’s also discovered the joys of using a tripod, using a selfie stick, all of which makes it difficult for her if she didn’t have those things to do the kinds of films that she does and put up the kind of videos that she does.
And what Arijeet told me was when I used to get images until the new voiceover apps came I would have to take those images that my friends send me to my parents to ask them what they want. Now, most of the time they were images I did not want my parents to see or jokes that I did not want to share with my parents. So this actually made it possible for me to hear what my friends have sent me without the assistance of anyone else. So in summary, what it gave them was a space to be with their friends, as young adults as young children, which was not constantly monitored by their parents and did give them the kind of privacy that they needed to be with their friends. Something that most young children I think take for granted but became possible for them because of technology.
The next ‘F’ is Fun and how can I talk about fun without an exclamation mark? This is a little girl a picture of a little girl with Down syndrome reading a book and absolutely engrossed in it. She couldn’t be more than three.
And so when he fell in love, this two and a half years old kid, his mother had made an audiobook of stories which he had the cassette recorder press to his ear, and he would hear the audiobook of his own experiences. She would be telling stories in Marathi about the time that he went to the birthday party but the time that he went to his grandparents house and that made him fall in love with books and they were audiobooks, and Arijeet is more an auditory learner than he is a tactile learner. So actually more than Braille what has opened up the world for him is audible Kindle audio and Bookshare which has made it possible for him and having fun is purposeful sometimes. So Sanket was laughing as he was telling me the story of how he played PubG. Most of you might know PubG which is an online game and he used to play it with friends and he knew how to use a joystick that to manipulate what he needed for PubG.
And what ended up happening was when they took into the wheelchair purchase showroom, his parents said “ab pata nahi iska joy stick hain” I don’t know this has a joystick. I don’t know if some kids can use it and he just swung right in there and started using the joystick because he knew how to do it because of PubG. So sometimes even fun can be purposeful and and let you do things that you didn’t think you could otherwise do, or other people don’t think you can do.
I just want to flag here that when we were talking about books we also looked up together, how many books in low resource settings like ours are actually accessible to children with disabilities? How many books do we have that are tactile, that are Braille, that are sign language books that are audiobooks and the answer is very, very few. Less than 1% of books in low resource settings are accessible to children with disabilities. And likewise, playgrounds. Playgrounds are also hardly accessible to children with disabilities. I know there are some lovely organizations like Gugudi and Kilikili which are trying to make playgrounds accessible, but unfortunately, too few all over the country.
I want to talk to you a little bit about family. There’s this F word is really really important to me, because, in the words of a famous pediatrician called Donald Winnicott, there is no such thing as a child, meaning that the child never exists in isolation. No matter how young you are as a child, you always exist in the context of your family. So this picture is of a little boy called Vignesh who comes to me. Vignesh in this photograph is five years old. Now, what happened was when Vignesh was a baby, even when he was two or three, his parents knew he had cerebral palsy. And at five he couldn’t he can’t sit but his mother Sarika and his father Vaibhav, were really keen to continue what they used to do together as a family, which was going to the beach, you know, many of you in Bangalore and South India do other things as you know, go to the forest or to a garden. In Bombay, for us, it’s the sea. The sea is the part of nature that we have access to and going to the beach is a family event for many people. It’s the only free recreation that most people can afford.
As he got heavier, the family did not have a car and it was very hard to manage a wheelchair on public transport. It just wasn’t practical. They thought about how we would go around, taking Vignesh with us. And so this little seat was created by his father and mother with straps to hold them in place. And then he could travel with his mother to the shops, meet the shopkeepers, get to know them, meet other children on the way, buy a balloon and hold it as he came on his way back, and most importantly, do the Sunday evening outing to the beach.
So this is a piece of assistive technology that was created by his parents for the family so that the family could do something together. That was really important to them.
And then we come to the next F word, which is fitness. Now when we talk about fitness, we’re often talking about physical fitness. And it was in this area that it was hard for most of the young people to come up with ways in which assistive technology had helped them. Well Sanket said, I do use my wheelchair to play wheelchair cricket.
But I think for most of them, being in nature, being outdoors, doing yoga, and for some of them having access to it online during the pandemic have been really, really important. For Aditya, for example, he said the only technology that has been helpful to me is my parents, they are the most assistive that anything could have been for me. And they introduced me to spirituality and yoga, which have helped me cope with my fears. I’m introducing one other young patient of mine who’s 15 Amartya, who said, tell people, you use apps for boring stuff like reading. But what I really need to do is to get out and get dirty to stay happy. So for him, football is his solace, and that’s what he uses. Amartya has learning disabilities and ADHD and that’s how he keeps himself mentally fit as well as physically fit.
And then again, when we talk about fitness, for example, I’d like to remind you that the playgrounds and playing fields are rarely accessible and we’ll talk more about what we need to do to make the environment more accessible. But lastly, I’m coming to function and future. The most important thing to remember is that when you are meeting with a young child, or at least someone like me is meeting with a young child. There are two experts in the room. You may be an expert on technology. I may be an expert on child development, but the person who’s an expert on their lives is the child. So we need to consult not just during a pilot of something that you have developed but consult at the design stage. What are your hopes and dreams? What do you want to make possible for yourself? How can we help you do that? And the next thing that I’m going to show you is a small video clip of Darshana and she is going to talk about herself and what she did was not just talk about her hopes and dreams for herself, but she was part of the group that taught other people. She’s one of our faculty at age 18 She became one of our faculty and I’d like you to hear what she says
[Video of Darshana]
So there you heard Darshana. Talk about the ways in which she collaborates with her therapists and with other young people with disabilities across the world and that group we had people from Bhutan as well, which is why she was talking about across the world. And the therapist learned so much from her about how they need to design interventions in a way that is meaningful for Darshana’s function or anybody like her their function, and what is helping them in their future as they imagined what their hopes and dreams are.
And here’s the last F word. These young people got together with me and told me to write to Peter Rosenbaum and tell him to wait, he forgot one F. He forgot the Freedom to make choices. This is Anandita in this photograph. She’s 16 years old. She’s 20 Now. she’s a musician. She’s a drummer, and she teaches playing the drums and she happens to have cerebral palsy. And she recalls her school days and she says sometimes when I would watch children play football, I would want to join but they and ‘they’ she means the teachers, the other staff in the school and the coach would say that I wouldn’t be able to play. I felt I could have always tried and I should be the one to decide.
And that is the most important F word of all. If we take everything from people, but leave them the agency that at least counts for something. I think that’s the most important thing that most people want is a sense of agency, the sense of being able to make choices in their own livesband yet the efforts are not enough, right. We all know what a great divide exists between what we hope and dream for children and what actually happens and particularly so in low resource settings like ours and particularly so during the pandemic which has brought into sharp relief, the great divide that has widened right now, between children who have access to the internet, and between those who don’t, between teachers who receive training on how to use assistive technology and how it can be useful and those who don’t, between children with and without disability. On the right is a photograph from a village in Jharkhand, and it was during the pandemic. And while there was all this big noise going on about how we are doing asynchronous and synchronous learning online for children so that they don’t miss out on schooling. This young man this enterprising teacher had realized that 80% of his students didn’t have access to a smartphone, leave alone the internet. So what he did was to distance them six feet apart. Make them wear the mask. He had a loudspeaker and he had a blackboard next to each one of them. Right. And that was his example of assistive technology.
The barriers exist, multitudes of them. There are attitudes. I’ve lost track of the number of stories. Some kid, for example, had to battle with a school to move his class to the ground floor. Because in their minds, the ground floor is for primary school. The first floor and second floor are for secondary school. Right? And how easy is it to change classes? Similarly, in his college, he struggled with having to tell the college that it is my right to use the elevator. But the rule was that students are not used to allowing to use the lift. Only teachers are allowed. God knows the teachers need more exercise among the students. But no that was the rule. And he had to battle for it for three months before he got his rights. So it is an attitude, it is accessed. It is affordability, right. We know that some of the apps and the tech that we’re talking about are not affordable for a lot of our students for a lot of our children. And the appropriateness to context. There is no point in giving a big electronic wheelchair to a person who lives in a Mumbai slum with a house size of six feet by six feet. We need to think about how it is appropriate to the context.
So the key things that I want to leave you with are if you want to make assistive technology meaningful for children don’t plan on fixing deficits that they have. plan on making it all about what is important for their childhood, which is fun, friends, family, fitness function, and future.
Ask children about their hopes and dreams when you’re designing it. They are the experts on their lives, and they should have the last F word which is the freedom to make a choice. And lastly, let’s work on the barriers together. Because that’s a work in progress. That’s not changing rapidly. We can do this together. Thank you.
Prof Amit: Thank you. Thank you very much for that very interesting, very insightful and such a lovely talk. I’ll invite all the participants to pose questions for Dr. Vibha Krishnamurthy. You could type them in your chat, or you could unmute yourself and pose the questions directly.
Yes Dr. Balakrishnan please go ahead.
Dr. Bala: So very, very interesting. Thanks for it. So I have one question. So of course, the way you put it in terms of their efforts is very interesting. But what’s your idea about inclusive education? So you talked about the future okay. But when you talk about the future and now somebody like me who has been a teacher, one of the struggles that we have found is many times education requires a certain discipline which may not be at that particular instant of time. Very, a lot of fun. Okay, but we still have to sort of make it inclusive. Okay. And what are your thoughts on it? Okay, so that’s something because you deliberately did not address that in your talk. So was it deliberate? Or was it you know? So, just some comments.
Dr Vibha: It was deliberate, actually, and because I think and it’s included in the efforts it’s part of function, how you function in school. And if I think back on my own education, as well as the education of my own children, I think they got more from what they learned outside the classroom than within the classroom. A lot of the time. And what children with disabilities often don’t get is those experiences of discussing things with their peers, being in the playground with them, taking part in music, art and drama. Very often some of those things are not accessible to them. When it comes to actual learning. You know, didactic education. I think you know, there are things we can do, but the most important thing in my mind, is to make sure that there is parallel growth and development in all areas of development, not just in terms of academic learning, academic learning certainly needs to happen and I could talk for another half an hour about what the barriers are there. So for example, even if you have some assistive technology for academic learning, other teachers are aware of that. I’ve had children who use communication devices, they come with the communication device to school, and they put it away in their bag. Why? Because nobody wants to use a device that nobody else knows how to use.
The teacher doesn’t know how to use it, the other kids don’t know how to use it. Yes, you’re so conspicuous by taking out your device. It takes time, people have to pause and wait to see what you have to say. It’s better to just keep quiet is what the kids are told. So when you’re introducing something we need to think about the broader menu I think of the school. What is the inclusive environment like what is the school’s policy? What are their practices? And what does that culture, I do a talk on inclusive education called Bill Will or Skill meaning you have to have the right will which is the attitude or the heart with the bill which is the policy and the teachers and the students have to have the skills so yeah, I think school is so much more than academic education, which is why I deliberately left out academics in that talk.
Prof Amit: There’s a question by Ravi Povayiya “How do you scale up what you’re doing across the country?”
Dr. Vibha: I think I want to invite Ravi to be part of our strategic planning meeting at Ummeed. It’s a big question and we are all asking ourselves that. But I think to specifically answer your question Ravi, Ummeed model is actually not to create franchises or to go and do things in different parts of the country ourselves. We believe that there are wonderful partner organizations all over the country. So for example, there is a fabulous one in North India called Latika Roy Foundation. There is a wonderful one in Madurai called Amar Seva Sangam. There’s another one in Guwahati called Shishu Sarathi. We work with all of them and I think we have to say that people are the experts on their own lives. And therefore people who are in the local area are the experts on their own communities. And we can come in and offer our support and expertise in areas where they need it.
So it has to be driven by demand. It has to be driven by what we think we can offer. But that’s really how we do it. So we build capacity. That’s why we are a training and capacity-building organization. While we offer services to children and families at Mumbai, wherever else in India, for that matter in a lot of neighboring countries. They need our support we go in there and do capacity building
Prof Amit: You could raise your hand or unmute yourself or you could post a question for Dr. Vibha in the chat.
Dr Vibha: While people are thinking, Professor Amit, I would invite Namita to comment given she’s also from the field space.
Namita: Hi, what am I commenting on?
Dr Vibha: On on both the last two questions, I was curious to know your thoughts about how do we scale our efforts to reach out to children with disabilities and and the other one being the issue of inclusive education.
Namita: But I think we do really think alike on both issues. In principle, in philosophy, of course, we would want children to have a childhood where they have access to everything that anyone has access to, will not achieve this for anybody to be honest. There are many groups that do not have a typical or good quality education. But in the end you have to look at it from both sides as well. A child needs to be educated in a way that allows them to explore their own capacity. And for different children. That’s going to mean different things. So creating a single answer to every single child is not going to work.
Beyond this is the reality that education especially of young children, has so much to do with the support they receive from the environment that they have within school, as well as outside school. And so a lot of the decisions we make, a lot of the decisions families have to do with this larger view of what is that experience I want for my kids do I want and what is really important, what will they get from home and community that that they’re not? And what are the things that I’m not able to arrange and organize for my child that and that may change by age that we change by ability that also many things, isn’t it? So if I think of my nieces and nephews and with and without disabilities and all the decisions that each family ultimately took, it changed, it changed over the years. Exactly precisely in response to this. So there isn’t a best and one and only answer. It’s not really about inclusion. It is about the quality of education.
I think the questions how do you scale up when you’re talking to someone who doesn’t really believe that the answer to anything is making one thing bigger? It’s about bringing more people to the table. You look at the work we do at Chetna. We create storybooks for children with disabilities but our goal is not how many children do we reach or how many books we produce it is how many people can we bring together and help them understand how to do this because there will be everywhere all the time for all eternity, who will meet many different ways to do we do vision assessments, our responses to see it’s not about how do I take my team and convert across the country it is about how do I bring more people into developing the skills and using the tools effectively. And so this is for me this has always been the answer you scale up by reaching out by making what you do more visible to other people and then find by being open to other people picking up your stuff and doing it better or doing it more effectively in their particular environment or situation. So that’s my take.
Prof Amit: Thank you Namita. We have two raised hands. Please go ahead.
Akila: Hi. My question. I think it’s continuing with what Namita was talking about, which is bringing more people to the table. So I work at NISH. And we’ve just started the past few years working with children with multiple disabilities and we don’t have a full time program here. So they visit us for clinical sessions, and then there’s just too much to do and it’s a little bit overwhelming, like, I fully believe in whatever you said, but there are too many children and then too little to less number of people who are aligned right to this whole concept. And so, yeah, what do you face the same problem and how do you overcome this?
Dr Vibha: Akila, I feel this is such a good question and it’s very easy to get into a space where you feel oh my god, you know, there’s just so much to do and how do I do this? The answer really, I think, is to look around and see who else is interested in doing this. And I think the biggest stakeholders are the families and they’ve got skin in the game. And they really want this to happen. So one of the things that we Ummeed does well, I think is family-centered care. So family-centered care means a few things. It means being respectful. It means being coordinated in care. It means sharing information with families, and most importantly, it means collaborative decision making. So what this does, then it makes families as collaborators and cocreators of whatever it is that you’re trying to do with a child. So for example, when we have an intervention plan, we ask the family and the child if the child is verbal or able to communicate, what is it that you want most? And the answer may be toilet training, maybe I need to go to my niece’s wedding next week, or a month from now, and we try to see how we can make that possible by not fixing your child by not saying okay, she has to be well enough to walk to the wedding next week. Right? But by thinking about okay, what are the things we can do in the environment to make that visit possible? So I think that way, it takes the burden off the professional to some extent, and creates families as co-creators in programs and also using anybody else in the community who doesn’t always have to be a therapist. So for example, all our community training programs are with community health workers who are eight standard pass or are 10 standard pass. And we are able to in fact, they pick up family-centered care way quicker than I’m sorry to say physicians do. Right, because physicians are so used to a top-down approach, whereas community workers are more proximal to the children and the family and this just sort of get it when we tell them okay, work with the family and here’s how you will work with the family. And they’re able to do that. So I think leveraging all the resources available in the community. You don’t have to be one therapist or one doctor who’s trying to ‘fix’ 100 kids, right? That’s the F word we want to avoid. We just need to say okay, what needs to happen for this child and family? Do they need to be able to go to the playground, but then so then your role sort of expands as a profession. It’s not just working with the child, but it becomes working with the family working with the community, picking up the phone and calling the school principal. I do a lot of that. So I’m a… what shall I say? I’m a community practitioner. I’m hardly a pediatrician. I hope that makes sense.
Prof Bala: So I think the question on scaling was very interesting because you know, earlier what we’re doing at at IIT Delhi, we were developing some know-how technology and process passing it on to industries to manufacture and we are hoping that the scaling will happen through them. But once we started this foundation some three years back for making tactile books. So then this issue has come up in a very big way. So how do we actually scale. So in the sense, there are two ways of working in institutions like IITs. We are very happy teaching at a very good level, very small set of people. But clearly, that doesn’t impact society in terms of the education levels and the engineering across the country is rather low, though we have some good schools. So but on the other hand, when we started this foundation, so it became very clear that what we need to do is important, that we need to align ourselves and we need to engage ourselves with a lot of institutions across the country that are doing something similar, sometimes much better than what we do sometimes. Maybe they can learn from us sometimes we can learn from them. So I think they and because it’s not a commercial venture. So it is very difficult to scale on commercial-scale because commercial producers stakeholders, and those stakeholders are themselves able to scale because they didn’t know you could have God law everywhere. In the country. But so this is an important thing. And I think as a country, we need to learn and we need to have better structures in place. And the structures may not be the similar franchise like what you said because that’s not good to happen. The passion of the people involved is so important to do inequality delivery, you know, what Namita said is so important that it cannot happen without and you said that people have that local knowledge. So for example, in the tactile space, we want to do the same thing. We want to very quickly align ourselves with a number of organizations to both local contents as well as local language expertise, to be able to make any impact of creating tackle material in different states or different regions of the country and to also reach out to the actual users and stake other stakeholders in this space. So I think at Empower, we will think about creating those spaces so that it actually creates some platforms to be able to do that. I think we have a very good chain that we should look forward to because without that I think impacting more people is going to be very hard, you know, good practices have to be shared and there has to be a platform where we can share those practices. Thanks. Thanks for these inputs.
Dr. Vibha: I agree. In fact, Professor Balakrishnan, what you’re saying is so important because I think we not only need to find like-minded organizations across the country, we also need to work across disciplines. And I think again and again in sciences, the biggest example of how working across you know science, economics, and various other fields have really resulted in breakthroughs. Very early in my career. One of my mentors told me to stop trying to learn everything. Surround yourself with people who know what you don’t know. And I think that’s been one of the best pieces of advice. So for example, I don’t know how to make my ideas of family-centered care and children as experts on their lives. I don’t know how to make that catch fire. But I do know people in the communications business who might know better and so working across disciplines, I think is another important thing.
Mohan: It was a great talk. So a couple of things that I have. One needs to create the platform for scaling policy advocacy is a very important aspect. Now, there are various stakeholders, the government there are donors because most of these cannot be run without money. And this is not a commercial organization. So you deal with donors. The third part is this body of professionals, as we would call them, who could work with your teachers especially that is mired with its own regulations like the RCI and all which is highly outdated, does not really understand the whole stuff does not encompass all disabilities, so on and so forth. So how does one go about advocating policy? That is helpful to scaling so can we work with the government to even implement 1/10 of what one is implementing in their schools or the in villages so that naturally something will boil up after about three or four years and the standard will grow is of being at zero not doing anything, do something at a very small level, and over time, let it graduate and boil up to something more important.
Dr. Vibha: I wish I had a good answer to how do you engage with a government because that’s the easiest way to scale. But there are no simple answers. And you and I know that really well. I think finding individuals who are in positions of influence, who are committed to the cause has been the most helpful strategy for us and I think wherever we’ve been able to engage governments, it has been where there is that one person, someone who passed away recently actually, Keshav Desiraj, I don’t know if any of you knew him. He was a very powerful advocate, and he was very much in the government. He was a joint secretary. So during his time, we were able to do a lot of stuff.
And local government is often much easier to work with, rather than go right to the top and try to see you know, how can you affect the country by policy? So for example, we’re working very closely with the NRHM (National Rural HealthMission), in Maharashtra in the Wardha District. Because there we have our partners in Mahatma Gandhi Institute of Medical Sciences in Wardha, who have a very close relationship with the whole ICDs system there who are very willing to look at early childhood development and disability as part of their package. And that’s the other thing right? The whole idea that you know, everything is separate. Women and child development is separate, health is separate, education is separate, and disability is separate. There is an actual fact they all need to work seamlessly together. And what I find is that seamless working together happens much easier at a community level. So it’s very hard to do it at the top level, and I at least haven’t cracked how to do it at the top level. If you do let me know.
Jitesh: Thank you very much for the insightful talk. My question was around the arts. So different pieces of arts, which we have also known. The people with disability are often very good. They generally have one or the art, they are very good at how do we facilitate the the art delivery on how to make that more accessible? Are there already some work going on or if so, how would you think that it should be done or what should be the role of technology in it?
Dr. Vibha: Such an important thing that you have spoken about. I’m going to expand from art Jitesh and say all kinds of leisure recreational activities have enormous scope to improve mental health. Well-being of all individuals, leave alone individuals with disabilities. There’s data and science to prove that the role of music, the role of visual arts. There’s a lot of data around that actually now fortunately, right and my thing is going to be let there be a time when I Google assistive technology and arts comes up in the first five websites. And for that you and I need to go out there and talk about its importance. They need to hear from a physician they need to hear from someone who’s invested in assistive technology they need to hear in schools and parents need to hear it because what do we have is the holy grail that everybody has to work towards is 10 standard to pass karna hi hain. And that is all at the end of 10th standard. I very often ask children, “What are you good at?” And the answer is study. I’m really good at studying.
And they really have no other answer than that. And where are you then speaking to the child’s strengths? Where is the scope for this child to become an artist, a sportsman and musician. A lot of times my work with families is about helping them let go of what the rest of society has created as the gold standard. And to say that unless we explore these spaces, the child will not explore their strength and also it will affect the child’s well being. You know, it’s really interesting, Jitesh. We had a session for parents, by some of these young people that I showed you Darshana and Sanket and so forth, and they spoke about the importance of leisure in their lives. And at the end of the session, a lot of the families came and said not only am I convinced about the importance of leisure for my child, and now thinking, why did I let go of my art? Why did I let go of my taekwondo practice? And I’m going to go back to that because that made me whole, right. So I think you make a really important point and I hope every one of us will take back that message with us.
Prof Amit: So thank you very much. Let’s see any more questions. We are also kind of running out of time. We’re close to 11:30. Now, we have been speaking very passionately for the last one hours. We should not tax you too much here. Thank you very much, Dr. Krishnamoorthy. For a wonderful talk for being with us. Through this session and for perhaps making us aware of some of these efforts, much more than we should have been. And I do hope that through your talk and through this through the insights we will try to bring more of more of the family more of the fun more of the friends into designing technologies and sure as technology designers, we don’t talk about family friends, within a course on within the basic courses in computer science or even electronics or any other engineering. So we’ll try to figure out ways to include them in our curriculum to see how we can have more and more people talking about freedom, freedom of choice when they are discussing technology. So thank you very much.