DC-Gender Disability, Gender, and Digital Self-Determination | IGF 2023

Gunela Astbrink

The panel discussion focused on the topics of digital self-determination and accessibility, highlighting the importance of empowering individuals and communities to have control over their digital data. Digital self-determination was described as the need to reconsider how individuals and communities can have autonomy over their digital selves. The panel acknowledged that society is still trying to understand the relationship between our lives and the technologies we use.

The discussion emphasized the need to address the digital divide, particularly for marginalized groups such as women, queer, trans persons, and those with disabilities. The panel aimed to make digital self-determination a reality for these groups by shedding light on their unique challenges and perspectives. Feminist perspectives played a central role in the discussion, with a specific focus on women, queer, and trans persons with disabilities.

One key argument made during the panel was that digital tools should be designed with accessibility in mind. It was stated that as a disability community, their motto is “nothing about us without us,” which means that persons with disabilities should be included in the development processes and community discussions. The panel stressed the need for all digital tools to be accessible and usable for all individuals, regardless of their disabilities.

Additionally, the importance of education and empowerment for people with disabilities in the digital sphere was emphasized. The panel shared a story of a determined young woman from Malawi who, despite having a disability and coming from a poor family, managed to study IT. Her education not only empowered her but also enabled her to tutor other students and utilize digital tools, even with her physical limitations. This example demonstrated the transformative power of education in enabling individuals with disabilities to actively participate online.

The panel also raised concerns about privacy and security, particularly for people with disabilities. They acknowledged the potential privacy and security issues that individuals with disabilities, especially those with visual impairments, might face. The need to ensure the privacy and security of these individuals was underscored, emphasizing the importance of safeguarding their personal information and digital presence.

In conclusion, the panel discussion on digital self-determination and accessibility provided valuable insights into the challenges faced by marginalized groups, particularly women, queer, trans persons, and individuals with disabilities. It stressed the importance of designing digital tools with accessibility in mind and promoting education and empowerment to enable active online participation for people with disabilities. Moreover, the panel emphasized the need to ensure privacy and security for individuals with disabilities, recognizing the unique risks they may encounter. Ultimately, the panel highlighted the significance of integrating inclusivity and accessibility into all aspects of the digital realm.

Judy Okite

The analysis emphasises the significance of accessibility for individuals with disabilities, both in physical and online spaces. It reveals that the evaluation of government websites for accessibility showed that 20% of the content remains inaccessible, indicating a pressing need for improvement. This highlights the lack of inclusivity and the barriers faced by persons with disabilities when accessing online information and services.

Furthermore, the analysis argues that individuals with disabilities must be actively involved in the process of creating accessible spaces and developing inclusive technology. It references Judy Okite’s experience in Dar es Salaam, where insufficient provisions for accessibility were observed. This illustrates the importance of including the perspectives and needs of persons with disabilities in the planning and design of physical environments to ensure that all individuals have equal access and opportunities.

In addition to physical spaces, the analysis also stresses the need for awareness and empowerment about rights among individuals with disabilities. Judy Okite’s assertion of her rights for accessible facilities during her stay in Dar es Salaam highlights the importance of advocating for and asserting these rights. The analysis further states that persons with disabilities should have a say in determining what works for them or not, enhancing their autonomy and agency in decision-making processes.

Overall, the analysis stresses the need for greater attention to accessibility in both physical and online spaces. The evaluation of government websites and Judy Okite’s experiences serve as evidence of the existing barriers and the urgent need for improvement. It argues that involving individuals with disabilities in the design and development of accessible spaces and technology, as well as promoting awareness and empowerment about their rights, can lead to a more inclusive society.

Audience

The implementation of certain features, specifically Zoom’s automatic captions, has had negative consequences for individuals with disabilities, particularly those who are deaf or hard-of-hearing. These automatic captions, intended to enhance accessibility, have instead led to confusion and disempowerment. This is due to the overlapping of captions in multiple languages, which obstructs the reliance on captions and lip-reading that these individuals heavily depend upon.

In order to avoid such detrimental effects, it is argued that technology companies should collaborate closely with individuals with disabilities and conduct comprehensive user research prior to implementing new features. By involving the very users who will be utilizing these features, technology companies can gain valuable insights that will result in more inclusive technology. This call for collaboration and user research is further supported by the incident involving Zoom, which serves as an example of the negative consequences that can arise from a lack of proper user research.

Furthermore, the importance of inclusive technology development is emphasized as a means to reduce inequalities and enhance accessibility. It is asserted that by working closely with intended users, technology companies can create technology that caters to the diverse needs of individuals with disabilities. This collaborative approach ultimately leads to more inclusive technology that empowers individuals rather than inhibiting their capabilities.

To conclude, the implementation of certain features, such as Zoom’s automatic captions, has had unintended negative consequences for individuals with disabilities. To address and prevent such issues, it is crucial for technology companies to engage in comprehensive user research and collaborate closely with individuals with disabilities throughout the development process. By doing so, technology companies can create technology that is truly inclusive and empowers individuals with disabilities.

Nirmita Narasimhan

The analysis highlights the importance of policies in ensuring compliance with accessibility standards. Countries with clear policies are more likely to effectively implement accessibility measures, as policies provide guidelines on what needs to be done, how to do it, and where it should be implemented. This is seen as a positive factor in promoting accessibility. The analysis also advocates for the creation and implementation of policies in countries where they do not exist, as well as the strengthening of existing policies to promote equal access to rights and opportunities for all individuals, including those with disabilities. While many countries have incorporated the Convention on the Rights of Persons with Disabilities (CRPD) into their legislation, the analysis suggests the need for the development of domain-specific policies to address specific accessibility issues in various domains. Different strategies for advocacy are required in different situations, as evidenced in the context of India. Active involvement of persons with disabilities in advocacy and policy-making processes is emphasized, as their perspectives should be adequately represented. The analysis also stresses the need for mainstream products to be universally designed, taking into consideration varying user needs and abilities. A user-centric approach in product design and enhancement is deemed essential to improve accessibility. Overall, the analysis underscores the significance of policies, the involvement of persons with disabilities, and the user-centric approach in achieving accessibility goals.

Debarati Das

During the analysis, several significant points were raised by the speakers. A central topic of discussion was the concept of digital self-determination, which highlights the need to understand who we are as digital beings as our digital footprints continue to grow. This evolving concept addresses critical questions surrounding the ownership and control of our data in cyberspace, affirming that a person’s data is an extension of themselves. It emphasises the importance of considering the rights and autonomy of individuals in the digital realm.

One key insight that emerged from the analysis was the significance of examining the experiences of individuals with disabilities in relation to digital self-determination. It was observed that digital spaces and decisions driven by data can greatly impact the autonomy and agency of individuals with disabilities. Therefore, there is an urgent need to explore how individuals can exercise control over their digital identities and have autonomy over their digital selves. By unpacking digital self-determination through the lens of the experiences of persons with disabilities, efforts can be made to reduce inequalities and promote inclusivity in the digital world.

Another important point discussed was the value of Design Beku and its principles of Design Justice in the field of design. Design Beku, a design and digital collective founded by Padmini Ray Murray, advocates for designing with communities, as opposed to designing for them. This approach aligns with the principles of design justice, which include ethics of care, feminist values, participation, and co-creation. By involving communities in the design process, Design Beku strives to create more inclusive and equitable solutions that address the diverse needs of different groups. This approach contributes to achieving the Sustainable Development Goals related to industry, innovation, infrastructure, reduced inequalities, and gender equality.

In conclusion, the analysis underscored the importance of digital self-determination, specifically in understanding our digital identities and asserting control over our data. It emphasized the significance of considering the experiences of individuals with disabilities to promote autonomy and agency in digital spaces. Additionally, the value of Design Beku and its Design Justice principles in advocating for inclusive and community-centered design practices was highlighted. These discussions provide valuable insights for addressing the challenges and opportunities associated with industry, innovation, infrastructure, reduced inequalities, and gender equality in the digital age.

Manique Gunaratne

Technology plays a crucial role in enabling individuals with disabilities to participate equally in society. Assistive devices and technologies act as a bridge between people with disabilities and their environment, allowing them to perform tasks that they might otherwise find challenging or impossible. This can include devices such as mobility aids, hearing aids, and communication tools. With advancements in technology, artificial intelligence (AI) has emerged as a powerful tool in improving the lives of people with disabilities. AI has the potential to make life easier for individuals with disabilities by developing solutions that cater to their specific needs and requirements.

However, cost proves to be a complex barrier to accessing technology for individuals with disabilities. While emerging technologies, such as AI and smart glasses, hold promise in enhancing the lives of people with disabilities, they often come with a hefty price tag. This poses a significant challenge, as many individuals with disabilities may struggle to afford these expensive technologies. The high cost of such innovations acts as a deterrent, limiting the accessibility of these technologies to a privileged few. Therefore, there is a need for collaborative efforts between technology developers, policymakers, and advocacy groups to address this issue and ensure that cost does not impede access to life-changing technology for individuals with disabilities.

Moreover, entertainment and emotional recognition technologies can greatly benefit certain disabilities, such as autism and intellectual disabilities. Emotional recognition technologies can assist individuals with these disabilities in understanding and interpreting emotions, which can contribute to enhancing their social interactions and overall well-being. Accessible platforms and games are also vital for providing entertainment to people with disabilities. These platforms cater to their unique accessibility needs and ensure inclusive participation in entertainment activities.

In conclusion, technology holds immense potential in empowering individuals with disabilities and enabling their full participation in society. Assistive devices and technologies act as enablers that bridge the gap between people with disabilities and their environment. AI, in particular, has revolutionized the landscape by offering tailored solutions to the needs of individuals with disabilities. However, the high cost of emerging technologies presents a challenge to their widespread accessibility. It is crucial for stakeholders to address this issue and work towards ensuring that cost does not impede access to these life-changing technologies. Furthermore, the development of entertainment and emotional recognition technologies specifically tailored for individuals with disabilities can greatly contribute to their well-being and quality of life. By embracing and advancing technology, we can create a more inclusive and accessible society for all.

Vidhya Y

The use of digital platforms has brought both positive and negative implications for individuals with visual impairments. On the positive side, these platforms have opened up new opportunities for communication and independence. Email, for instance, has revolutionised written communication, which was not previously possible without the advancement of technology. Digital tools, such as apps designed to identify colours and currency, have also empowered visually impaired individuals by providing them with greater independence and autonomy.

Furthermore, assistance tools like ‘Be My Eyes’ have proven to be invaluable resources for visually impaired individuals. These tools connect visually impaired individuals with sighted volunteers who can assist them in various online tasks, such as reading CAPTCHAs. This collaboration demonstrates the power of digital technology in providing inclusive and supportive environments for visually impaired individuals. Moreover, these tools can be used creatively for tasks like matching clothing colours, further enhancing the independence and quality of life for those with visual impairments.

However, there are also negative aspects that must be addressed. Accessibility remains a significant challenge for visually impaired individuals in the digital space. Many websites are primarily image-based and lack proper labelling, rendering them impossible to navigate using assistive technologies. This accessibility barrier hinders visually impaired individuals’ ability to access information and participate fully in the online world. Additionally, understanding and keeping up with new features and technologies can be daunting for visually impaired individuals, as design choices are often not optimized for their needs.

Moreover, women with disabilities face additional challenges in digital spaces. Privacy and vulnerability concerns are particularly prominent, as crowded environments or the use of screen readers may compromise their privacy when using digital platforms. This puts them at a disadvantage, highlighting the need for further measures to ensure the digital space is inclusive for all individuals, regardless of gender or disability.

In conclusion, the digital space presents both empowering and challenging aspects for individuals with visual impairments. While digital platforms have provided newfound opportunities for communication and independence, there are still accessibility issues that need to be addressed to ensure inclusivity. Furthermore, women with disabilities face unique challenges, emphasising the importance of considering diverse perspectives and needs in the development of digital tools and platforms. By addressing these challenges, we can create a more inclusive digital environment that truly benefits all individuals.

Padmini Ray Murray

The implications of surveillance capitalism and device use are particularly burdensome for disabled individuals. These individuals face additional challenges and risks due to the compromised nature of the devices they rely on. Unfortunately, most technology designs targeted at disabled users fail to consider these implications, exacerbating the difficulties they already face.

To address this issue, it is crucial to establish effective communication channels with disabled users in order to fully understand their specific needs and requirements. By engaging in conversations with designers and technologists, disabled individuals can provide valuable insights that can inform the development of more accessible and inclusive technologies. This collaboration can lead to better solutions that truly meet the needs of disabled users, going beyond basic accessibility requirements.

Furthermore, marginalized populations, including disabled individuals, are particularly vulnerable to privacy and surveillance issues. These groups often have limited opportunities for recourse when their privacy is compromised. It is imperative to pay special attention to the impact of surveillance on disabled users and their ability to exercise self-determination. Ensuring their privacy and autonomy is essential for promoting inclusivity and reducing inequalities.

One of the challenges in technology design is the tendency to create products at scale, which hinders the ability to provide more nuanced and individualized user experiences. Technology development often prioritises mass production and standardisation, which leaves little room for customisation. However, creating customised products requires a paradigm shift in thinking, moving away from one-size-fits-all approaches. Artificial Intelligence (AI) can play a crucial role in achieving this shift by enabling more personalised and tailored solutions for disabled users.

In conclusion, there is a pressing need to create more individualised and user-tailored experiences in technology design. This entails actively involving disabled individuals in the design process, fostering collaboration between designers, technologists, and users. Additionally, advocating for their rights and addressing the unique privacy concerns they face is crucial in building a more inclusive and equitable technological landscape. By embracing a paradigm of customisation and leveraging the potential of AI, we can empower disabled users and ensure their needs are met in a more meaningful and comprehensive manner.

Gunela Astbrink:
you you you I think we can start. We can start. Yeah. Okay. I would like to say good morning. Good day. Good evening to everyone here in the room and also online. This session is entitled Disability, Gender and Digital Self-Determination. And this is the session on the Dynamic Coalition on Gender. So we are delighted to have a number of excellent speakers from different parts of the world who will be joining us online and also there’s a speaker here on site. And so I will pass on to the organizer of this particular session, Deborah Arte Das, point of view, and also the person responsible for the Dynamic Coalition on Gender. So please, I wish Deborah Arte was here in person, but welcome Deborah Arte online. And Deborah Arte will give us a context for this particular session and introduce a little bit more about the topic. So thank you Deborah Arte. All right. While we’re waiting for some of the online panelists to join us, I will well, there’s a concept of digital self-determination and that’s what the framing of this particular session is all about. And it relates to our digital footprints and we know how much they are growing and society is grappling with new concepts, experiences, and understandings of the relationships between our lives and the technologies that we use. And who are we as digital beings? Are we able to determine ourselves in a data driven society? How do we locate ourselves as empowered data subjects in the digital age? How do we reimagine human autonomy, agency, and sovereignty in the age of datafication? Self-determination has been a foundational concept related to human existence with distinct yet overlapping cultural, social, psychological, philosophical understandings built over time. Similarly, digital self-determination, DSD for short, is a complex notion reshaping what we understand as self-determination itself. DSD fundamentally affirms that a person’s data is an extension of themselves in cyberspace and we need to consider how individuals and communities can have autonomy over our digital selves. So this panel session will center on the intersectional feminist perspectives with women, queer, and trans persons with disabilities and experts working in the intersections of digital rights, gender, accessibility, and technology. We will explore the idea of DSD through the lens of gender and lived experiences of persons with disability. So this is drawing from a first-of-its-kind series of DSD studios organized by Point of View. Point of View is the organization in India headed by, well, the project is involved with this particular topic and headed by Debarati Das. It’s been done in four cities in India and the panel will focus on the theme of digital divides and inclusion and also delve into the ability of women, gender, and sexual minorities living with disabilities to digitally self-determine themselves using current emerging digital technologies based on lived realities of individuals from different geographies and contexts. And secondly, it will deepen understandings of the need and potential to work with persons with disabilities in developing new and emerging technologies. Thirdly, it explores the collaborative and learning opportunities to make DSD actionable and a reality for women, queer, and trans persons living with disabilities. So, we are going to look through the lens of gender, sexuality, and disability and explore a bridge between access points and so-called pain points and think of inclusive ways of determining the self in new digital life spaces going beyond accessibility and also thinking about personhood, agency, choice, autonomy, rights, and freedoms in digital spaces for persons with disabilities. We will draw from our experience of DSD studios and its outcomes, articulate an exploration of a root concept of DSD and its key components through the lens of disabilities and gender. We’ll think about how we can co-create DSD through theory, practice, lived experiences, and concrete examples. And finally, operationalize DSD via a set of core principles and policy recommendations centering the intersections of gender and disability. So, we are still waiting for the online speakers. So, I will pass on now to Vidya, who is here with me, and ask Vidya a little bit about her experiences of being a digital person online and any barriers and enabling factors around this thing about accessibility, autonomy, choice, and potentially what are the implications for a woman with a disability. But before I do that, I will introduce Vidya, who is from an organization in India called Vision Empower, and Vidya is a co-founder. Vision Empower is a non-profit enterprise incubated at IIITB in Bangalore to bring education in science and mathematics to students with visual impairment. She is a research fellow at Microsoft Research India and has authored several papers on issues concerning people with vision impairment, such as improving programming environment accessibility for visually impaired developers. Vidya has received numerous awards and scholarships such as Thai Aspire Young Achievers Awards, Reebok Fit to Fight Award, and the Diberay Ambani Scholarship for Academic Excellence, and many more. So, please, I’ll pass now over to Vidya, so I look forward to hearing your particular experiences. Please go ahead, I’ll turn it on. Yes,

Vidhya Y:
thank you so much to the organizers for having me here, and also to Gunilla. Yes, we make STEM education accessible for children with visual impairments, and I am born blind, so I have experience of growing up in India, which is one of the developing countries, and also I have experiences of going online, the digital space, as a blind person, as well as I am a woman with a disability, so I have that experience as well, so today I’ll be talking more from a lived experience perspective, and also by, I’ll also be sharing some of the observations that I’ve had with children, as well as women with disabilities from my friend circles, and things that people talk about, generally, online. So, firstly, digital space, when we talk about it, it is really huge, because whenever we say technology, that’s the only way, as a blind person, I can communicate with the world, I can be more efficient, it has opened up so many opportunities like never before. I always mention this thing that, you know, growing up in a village, I didn’t have access to technology in the growing up years, and I missed out quite a lot, but as soon as I got onto the online platforms, there was, like, so much that I could do, like, you know, even I didn’t have to ask somebody to read out news, what’s the news, even to see the time, you don’t have to go looking for a Braille watch, even when you take something simple, like something so obvious, like written communication that everyone has on a daily basis, it was never possible for me till I learned to use email, because till then, if I had to communicate with somebody who can see, it was verbally, or someone had to write it for me, or I had to write it in Braille, which majority of the people don’t understand. Now, this actually compromises so much of what you have to say, because if I were to send a message, and if I were to ask somebody to type it for me, that means I don’t have privacy, what I want to say, I cannot say it. But digital platforms have opened up so many opportunities, and definitely have given a lot of privacy to individuals with disabilities, which we don’t have, mostly because someone or the other is always there, and the more severe disability you have, from what I have observed, the lesser privacy you have. And, as we know, that a lot of people are not able to get on digital platforms are really good, as we all know. They have enabled so much that was not possible before. But definitely there are so many challenges, in general, for persons with disabilities, like firstly, the accessibility issues that we all generally talk about, the websites are not designed in a way that people can access, there are a lot of images, a lot of the things that are so obvious for other people, I’m talking from a visually impaired person’s point of view, they’re simply inaccessible, because they’re not labeled, they’re image-based. But when you talk about women with a disability, the barriers are many, too many. From what I have observed, you know, it’s an irony, actually, digital platforms, as I mentioned, they have given a lot of privacy, at the same time, you have to be so careful, because when I started using a computer, for example, I was not using a lot of video calls, it was not necessary for me, but when the, when COVID happened and when people were trying to get on to online platforms, then video calls were a must. So, for me, first, I assumed that in the computer, the camera will be the whole of monitor, that was my assumption, because I did not know. And then, I would put my screen a bit down, thinking that, okay, if I don’t want myself to be visible, I can put it down, so that people are not able to see. But once when my sister took a look at it, she was just saying that the camera is just on top of the monitor, and it’s just your finger size if you put it down. Actually, people can see you much more clearly. So, from then, it’s really difficult without taking a second opinion to do anything digitally, because you really don’t understand. You really don’t know. I feel that I have too much vulnerability, and I’m missing out a lot of things, which the world outside knows. So, I feel like taking a second opinion for everything. But once you learn the basics, once you learn how to be visible, then it will definitely empower you. But at the same time, something new would have come up, and there’ll be something that you’re missing out compared to someone who can see, for example. So, these are some of the constraints that I face on a daily basis. And also, one of the other issues when you’re using a screen reader and typing something, when you’re in places where it’s crowded. So, whatever it is reading for you, for example, you know when it’s reading B and D. So, you might not make out the difference, and you tend to send some other word instead of some other word. Or when we say voice communication that you’ll have to use, sometimes it’s really confusing because, again, there’s no privacy when you’re in a place. Suppose I’m in a conference, and I’m not able to type everything because it’s touchscreen. When I’m trying to use voice based communication, there’s no privacy. So, all of these are there, and one of the main barrier that I have found whenever I have to join online in a lot of meetings, everyone finds it, whether you have a disability or not. It’s like you cannot type at least if there’s some other disability, maybe typing may be easier if, say, you have a hearing

Gunela Astbrink:
impairment or things like that. But if you have a visual impairment, typing is a huge issue, especially on phones. But you cannot send out voice messages on some of the WhatsApp groups, for example, the ones that you have for visually impaired because the fear that someone will reach out to you and message you and things like that. It has happened so many times in the past. So, though it is empowering, it’s still restricting, and it’s not empowering in the true sense actually. So, these are contradicting points, but this is the reality. This is what happens with most people. Thank you very much, Vidya. There’s so many different experiences that you have explained to us, and that’s so important to understand what a person with a disability goes through in becoming more and more online and becoming more active online. I’d like to tell a story about a young woman in Malawi in Africa. She was, just as Vidya, supposed to be here, but unfortunately there were visa issues and so forth, and through the Assista Dynamic Coalition on Accessibility and Disability, we have provided travel support for persons with disability to participate here at the IGF. And I’d like to explain about Grace Salange from Malawi. She is a wheelchair user. She has a speech impairment, and she has limited use of one hand, and she comes from a poor family in a village, but she was determined to study IT, and so she went through school, she went to vocational college, and she got through that with very well, and now she sometimes tutors other students. And the way she uses a smartphone or a laptop is with her knuckles. That’s the way she can communicate with her digital tools. And what is important? When a person with a disability is online, who knows? There’s no like, oh, they’re different, or something like that. We are together, a digital being. And that is important, that we are then feeling like we are on the same level with anybody. We communicate in the same way superficially, even though there might be tools that are needed. But the recipient of an email or a text wouldn’t know that. And I think that’s very important. But obviously those tools, they need to be there. They need to be workable, they need to be designed with accessibility in mind. So we’re talking about tools in a general sense, we’re talking about websites based on the international guidelines, the Web Content Accessibility Guidelines through W3C. We’re talking about making sure that apps are accessible. And it’s so important when any tool, any learning platform, anything is developed, that it’s done together with persons with disability. So there is that saying in the disability community, nothing about us without us. is part really of digital self-determination. That we as persons with disability are able to be part of a development or part of the community as such. And we are respected for that. So, I just wanted to pass back to Vidya to talk a little bit about some of the privacy and security issues. Because we can imagine that as a person with a vision impairment, there are additional concerns about privacy. We all have concerns about privacy and security. But there might be some additional factors that Vidya can explain to us. Thank you. Yes. Actually, digital tools enable you to do a lot of things

Vidhya Y:
by yourself, which was not possible. For example, these days, there are a lot of color recognizers. There are, if you have a currency, there are apps which can tell you what the currency is about. Then there are apps like Be My Eyes. You know, Be My Eyes is an online app which visually impaired people can install on their phones. And persons who can see sighted people can sign up as volunteers. So, if you want any help, suppose you’re not sure if the light is on or not, and one of the huge constraints that we have is solving captures. Captures are designed for not being readable by machines so that the internet is, the privacy is not compromised. But these can be huge barriers for persons with visual impairment, especially when you don’t have audio capture. It can be very frustrating because though you know how to use a computer, you cannot use it. So, though you can navigate the website, actually you cannot without taking help. And always there will not be somebody around you. But if you use tools like these, you can, anytime, any part of the day, of course, there’s a constraint that if you know English, then any part of the day, you will get somebody to assist you. Even if you don’t know English, you can set up your local language. Whoever is volunteering can set up their language as the local primary language and can assist in that language. But, for example, in India, we have a language called Kannada. So, if I want to get help in Kannada, then I will not get a lot of users in Indian time, night time, because obviously Kannada-speaking population, for them, morning is Indian time morning. But if you know English, 24 hours, there will be someone to assist you. But really, sometimes I use these tools because you cannot expect someone to be always around with you and you need quick help. One of the things is that always people also may not be willing to help you or even if they’re willing to help you, they may not have the time. So, these tools are very good, actually, because you can call and you can ask them. In fact, I conducted a lot of digital literacy trainings as I’m working with school teachers. So, I actually guided them on installing these apps and taking advantage of them. We found really good users, you know, apart from the CAPTCHA example that I told you. So, how it works is you can call them and the volunteer who picks up the phone will tell you to take the phone and point it to the computer. Now, if you’re blind, you may not know whether the CAPTCHA is visible or not. So, they’ll tell you move right or move down. Now, I can see it better. Now, I can tell you. But, you know, when I conducted these trainings, teachers, actually, the women teachers found innovative use of those technologies. In fact, somebody was using it to match their dress. We call it sari in India with bangles. So, whether the color is matching. So, these are some of the innovative, but these were very much needed for the teachers whom we are working with and they started finding these tools very helpful. But now, talking about the privacy concern, it’s like you don’t want to depend on somebody too much because they’re not there or they may not have the time, but you’re forced to depend certain times. And at the same time, you’re very concerned about where you’re pointing the camera towards, whether it is safe, whether you don’t know what’s happening, who is picking it up. You can just know the voice, but you don’t know what data is being collected. For example, there will be, just take, for example, banking transaction. Now, at the end of the transaction, if you have to enter your CAPTCHA, it means you have to enter all the details in the beginning itself before pointing your screen towards the computer, which means the person who is at the other end can figure out what you have typed. So, that is a huge compromise, actually. I mean, people are well-intentioned, but at the same time, it’s a huge compromise. You’re not very sure, but if you were to enter the CAPTCHA in the beginning itself and then type your data, then it will time out. So, the CAPTCHA will have only 40 seconds or a minute. By then, you have to enter and submit. So, that kind of privacy concerns are there, and the privacy concerns about how much of you should be visible to the other person, where are you pointing your camera, whether it’s safe, whether you’re very unsure, actually. Like, apart from the voice, you’re not sure of what’s happening. So, these issues are there specifically for women with a disability. And even on simple platforms, which everyone uses on a daily basis, like Facebook, Instagram, all of these, we talk about accessibility issues. Those are definitely there. But, for example, now, if I were to upload all the photos that I have taken during this conference, if I have to make a blog, or if I have to put all of these on Facebook, now, what I do is I generally tell somebody to… So, my cousin has come with me. He’s going to give me the photo with the caption. But that’s all information I have. Now, I don’t know whether I want those photos to be there or not, because you’re not seeing them in the true sense, right? You’re just depending on the caption. And sometimes you might miss it. There may be four or five pictures, and there may be one caption that is there. Always, there won’t be somebody to give you those captions. So, always, it is risky, because sometimes people have told me only half of your face is visible, or this photo shouldn’t have been there. And everyone so much relies on visuals that sometimes you’re forced to take screenshots and share. And then you really have no idea of what you’re sending. So, these concerns are there. They’re very empowering. At the same time, all of these concerns are there. You just need a second opinion most of the times. Thank you very much, Vidya. There was a lot of very good examples there of particular privacy and security concerns. We did have some technical issues with the Zoom link, and I’m very pleased to say that our online speakers

Gunela Astbrink:
are nearly all there. So, we are switching back to the introduction to Devarati Das, who will explain a little bit about the project in India when it comes to this particular topic. So, over to you, Devarati. Hello, everybody. Sorry, there were some technical issues and some confusion with the link.

Debarati Das:
Thank you all very much for joining. I’m Devarati from Point of View, and we are a feminist nonprofit in India working primarily in the intersections of gender, sexuality, disability, and technology. So, to set some more context for this session today, as our digital footprints grow every day, we are really grappling with new concepts, new experiences, and understandings of the relationships between our lives and the technologies that we use. And it’s become really important to understand who we are as digital beings, what does the self mean in data-driven digital spaces, and how do we imagine things like autonomy, agency, choice in today’s age of datafication? So, digital self-determination is an evolving concept to consider some of these critical questions, and it fundamentally affirms the fact that a person’s data is an extension of themselves in the cyberspace, and we need to consider how individuals can have autonomy over our digital selves. So, today we’ll unpack some of these very critical questions through the lens of experiences of persons with disabilities from different countries and regions. And I’m very pleased to introduce our moderators. Sorry about the delay because of the technical issues. Our moderator on site is Gunela Aspring. Gunela has been very active in the disability policy programs and research for 30 years, and chairs the Internet Society’s Accessibility Standing Group. And has also served on the IGF’s Multistakeholder Advisory Group, and is the vice chair of ICANN’s Asia-Pacific Regional At-Large Organization. Our moderator online and our partner in this is Padmini Ray Murray, who is the founder of Design Beku, a design and digital collective that is based in Bangalore, India, that works to shift how we can think about design and tech as processes of co-creation and participation, centered around feminist values, design justice principles, and ethics of care that advocate also for designing with communities and not for communities.

Gunela Astbrink:
With this, I hand it over to Padmini to maybe share in brief a bit more context of how today’s topic relates to disability rights and justice, and then over to you both, Padmini and Gunela, to take the conversation. So, yeah, good. Can you hear me? Yeah, great.

Padmini Ray Murray:
Thanks for the introduction, Bevorati. It’s nice to be here, albeit virtually. So I think actually Vidya, the first speaker, has already kind of set the scene quite well, because I think as they mentioned, that digital self-determination, of course, is something that we are all kind of currently positioned in a way that we all have to think about quite deeply because of the implications of surveillance capitalism. Every single device we use is compromised by some form of surveillance. And it is very difficult for even non-disabled people to wrap their head around the implications of being online, using these devices, and thinking about how to keep themselves and their privacy safe. And I think, obviously, this burden is doubled for people with disabilities. There are two reasons for this, largely because most devices or apps, even if they are made for disabled users, might not be taking these concerns into consideration when they’re being designed. So some of our work over the last few months with Point of View has been actually speaking to designers and technologists and putting them in conversation with people with disabilities so that they can understand their needs better. Because I think something that we all kind of come across when designing technologies is that while there are accessibility guidelines, for example, those set forward by the W3D, those are often just a baseline. And there is much more nuanced requirements of disabled users that need to be taken into account. I think the second issue is that in any kind of case around privacy and surveillance, it is always the marginalized who are the most vulnerable. And there is often the least kind of opportunity and options for recourse for them. And so it becomes even more important that we look specifically at disabled users and how they might be able to pursue self-determination as a use case. So I’ll just stop there and I’ll hand back to Penelope.

Gunela Astbrink:
Thank you very much, Padmini. And just for those participants and speakers online, we did start over half an hour ago. So it means we have about 25 minutes left. So we will move on to talk a little bit about, let’s see, we’re going to talk about imagining digital tech that works for everyone. And so I’m keen to hear examples and stories of digital tech that provides accessible, safe, joyful user experiences. So if Manik Gunaratne is online, I’d like to pass the floor over to her. Manik Gunaratne is the manager of a specialized training and disability resource center of the Employers Federation of Ceylon. She has promoted inclusive economic development centering on persons with disability. And she also acts as a vice chairperson of the South Asian Disability Forum and is a founding member of the South Asian Women with Disabilities Network and a member of the Asia-Pacific Women with Disabilities United. So if Manik is there online, please go ahead and talk about how digital tech, how it can be the best we would like it to be. Thank you.

Manique Gunaratne:
Thank you, Gunala. Yes, the technology is very important for people with disabilities because that’s how we survive in the society. Because we as people with disabilities, we have a disability which we have to admit. So through these assistive devices and technology, it’s easy for us to work equally capable as people with non-disabilities. And also, if we imagine a world of technology which will assist people with disabilities, for example, if there is a world where the technology through the movements of people with disabilities, which they can inform the caregivers what the requirements of the person with disabilities, then the lifestyle would be very easy for us. And especially now with the AI, artificial intelligence, AI technology, there are so many technologies available, but the problem is the cost factor. So it’s very important that they have, because for example, for hearing impaired persons, if someone comes, say if someone rings the bell, hearing impaired persons cannot hear. Or if a dog barks, a hearing impaired person cannot hear. But when the technology is there or through a smartphone or any device, if a dog is barking, a picture can be provided a dog barking or when the doorbell is ringing. Through the smartphone, if they can indicate that the doorbell is ringing. So it will be very easy for hearing impaired persons to make life easy. And also for vision impaired persons, the smart glasses, right? If we are through the eye gestures and when we walk with the smart glasses, if we can identify what is around us and give a description, so it will be very easy. And also for people with physical disabilities, they are the people who have the mobility difficulties. So through apps and technology, they can find out places which they can access. It may be a restaurant, it may be a movie theatre. So those things are important. And also there are people with disabilities where their movements are limited. So through hand gestures and facial expressions, if they can operate the computer, they also can be equally capable as people with non-disabilities so that they can be employed and economically active. And also if there may be technology through brain functions and the way of thinking, if they can operate any devices. So those are very important. And also entertainment is not only for people with non-disability. We as people with disabilities also need entertainment, maybe playing games through smartphones and the computers. So any accessible games and technology, it’s very important. And also if technology is there to give emotional recognition, people with autism and also people with intellectual disabilities, that would be very grateful for them. And platforms which are accessible so that all of us can equally use platforms which are accessible. And if we can imagine of a world where a smartphone, sorry, smartphone, if you want to cook something, if you put all the ingredients and press the buttons and say, I want fried chips or anything cooked rice, whatever, if the end product is there. So for people with disabilities, the phone can be very smart. So and we as people with disability use a lot of devices. I’m a vision impaired person. If you can just imagine a world full of darkness around you, and that is my world. So we do work equally capable as people with non-disability through various apps, the smartphones, the laptop, and we use the Be My Eyes app which gives assistance for us and currency identifiers, carrier recognizers, a lot of apps are available through the smartphone and other devices. So world with full of technology, especially for women with disabilities is very useful for us. Thank you so much, Manik. Wouldn’t it be wonderful if all of those technologies were available so that persons with disabilities could live seamlessly and independently?

Gunela Astbrink:
And that’s what we’re all aiming for. I would like now to ask Judy Okita, if she is online, to speak a little bit to this particular imagining topic, but also talking generally about her experience of accessibility and potential barriers. And Judy Okita is from Kiktonet in Kenya and is the founder of the Association for Accessibility and Equality. And she’s been advocating for many years for better access for persons with disability, both in regard to physical infrastructure and online content. So I’ll hand over to Judy, please, if she is there.

Judy Okite:
Hello, Gunela. Thank you. Good to see you. It’s an interesting topic that we talk about accessibility. for persons with disability. And yes, I will be excited to see all inclusive technology or inclusive, you know, physical spaces, because that’s the one that really affects me the most. I know for a long time we’ve been advocating for physical accessibility even within the IGF. I hope that this year it’s much better. And the little things that we don’t get to think about, we don’t get to look into what really brings the barriers and so enables or rather puts the people into the spaces of you have to request for assistance every now and then. So one of the things that probably I’ll just mention that we have been able even to do with Kiktonet in this year, we were able to evaluate the government websites. We did that on 46 websites. Just to be able to see the access, how accessible this information for persons with disability is. Unfortunately, the highest was got an 80%. Of course, we were using the poor principles. And it was interesting, the feedback. The feedback from government was interesting because people felt if you are at 80%, then, you know, you are at a good space. But no, if you’re at 80%, that means 20% of your content is not accessible. Meaning that your content is still not accessible for persons with disability. Another thing that we found from the research that we did was that more emphasis is placed on the persons who are blind when it comes to digital content. But you will find that a person with cognitive disability is actually more disadvantaged. If the content is not understandable, if the content is not perceivable, then you’ve lost this person. They’re not going to be able to interact with your information as much as you would want all of them to. And looking at it from the Kenya perspective, it’s only a few years, maybe two years ago, that the cognitive disability was recognized actually as a disability. Then you can see how far we still are on inclusion, on ensuring that everyone is included. So I would really like to see if there are these little things that we can ensure that the persons with disability are part of our change. Yes, we want to make change, but we need to include them. Not because they want to, but because they have to be part of the process. If I can just quickly give an example. Most recently I was in Dar es Salaam in Tanzania. We were having the Forum for Freedom in Dar es Salaam. That is an annual event. We’ve worked with them before, so they know my very specific needs when it comes to the physical platform. So when I got there, they had the ramp, yes, but there is the big pavement before you get into the ramp. So my question was, how does this make sense? So yes, there is the ramp, but I will still need to be lifted up to get to the ramp. So that’s not the access that we are talking about. They had a really beautiful, accessible room, but they have this very small cubicle for the washroom. So I decided that this time around I’m not going to say much about it. I’m just going to demonstrate. So I had to call the guys from the reception, and I was like, could you please come upstairs with the wheelchair? Is there a wheelchair? So they were like, okay, yes. So they came to the room with a wheelchair, and I requested them, could you please push the wheelchair into the bathroom? And the guy is asking me, how do we do that? I’m like, that’s an excellent question. How would you expect me to use it if you cannot push it in there? It’s not that the persons with disability want to be part of the process. They have to be part of the process. We need to empower the persons with disability to really be able to know their rights. I mean, I have the right to say this is not working for me. It’s not for you to tell me, no, this is the accessible room. People use it. No. I tell you, if it is not accessible, then it is not. And I just kept telling them, if you had included a person with disability to be part of this process, the ramp would not have been this bad. I mean, the washroom would not have been this bad. It’s not about having a wide, beautiful room. It’s about having it accessible. So I would really love to see if we can do that and be deliberate in that. It’s not something that we are requesting. It’s a right. We need to be part of that. We need to be part of the move, of the change. It’s not about we are going to disturb them, or we know what it is that they need. It’s about ensuring that they are part of that process, that they are there, that they have a yes or a no, and we are able and we are ready to listen to the yes and no and make those necessary changes. Thank you very much, Granella. Thank you very much, Judy. And I think it just shows that we have this beautiful imagining of what accessibility is and what technology can do. But then we come to earth and realise some really fundamental things still need to be fixed. And I think Judy also made suggestions there about nothing about us

Gunela Astbrink:
without us. We need to be involved in those decisions on how something is built, if it’s in the built environment or in the online environment. So I now just wanted to ask the audience if there were any particular questions, comments. And first of all, Padmini, are there any online questions or comments before we go to any in the room?

Padmini Ray Murray:
So actually, Granella, since we just managed to get Nirmita in the room, it would be really nice if we could also include her in the conversation. So I think you might have a brief biography for her, but Nirmita is a widely respected and known specialist in disability rights and policy from India. So, Nirmita, maybe we could have, since we’re running a little short of time, skip to the question, which is that how do you feel policy and regulatory processes can kind of ensure the inclusion of disabled people

Manique Gunaratne:
in the creation of or the making of technologies, just like Judy was suggesting? Yeah. So first of all, apologies for coming late. I was facing some technical issues.

Nirmita Narasimhan:
So let me get to the question. I think it’s important to have policies because otherwise it ensures that people are aware that there is a need. It is mandated. It is recognized by law. There are standards to comply with. Otherwise, it is just a personal request of somebody to somebody, right? And the fact that there is a legal and a social requirement and a responsibility to comply with standards, I think that is very important to ensure that accessibility is there where we see. So if you look at the DARE index survey, it shows that countries which have policies are more likely to have accessibility implemented. And so starting from the policy, I think I would like to say that now, either we need to have policy or where we have policy, we need to focus on implementing the policy. And that gives us guidelines on what to do, how to do, and where all to do. So I think that answers your question in brief. Can I just very quickly add a follow-up question, which is that how would you advocate disabled people lobby for this kind of policy? Because it’s quite labyrinthine, right, like getting these questions to a policy level.

Padmini Ray Murray:
So if you can just maybe share an example or maybe advice as to how that might be done.

Nirmita Narasimhan:
Sure. So I think by and large, a lot of countries have implemented the CRPD and have ratified and signed and are implementing it in their legislation. But clearly, domain-specific policies have to come from within and persons with disabilities have to do that. It also depends on different strategies and different situations. For example, in India, when we had to lobby for the global and the national level copyright law, we did a whole lot of research on what are the legal models available everywhere. We ran campaigns, we had meetings, we had signature campaigns, we had a whole kind of campaign stuff happening. On the other hand, when we look at electronic accessibility, we had meetings with the officials of the electronic and IT department, and that’s how we worked with them to develop a policy. On another level, when we look at implementing the procurement standard in India, we worked again with the ministry, with an agency, and there were nationwide consultations with experts and with different academic groups and industry on what the standard should be and how it should be implemented. But clearly, the one thing that is there everywhere is that we need to be involved and we need to be motivated and get other people to be responsible for this. It’s not something which is only applicable to us. It’s something we want the country as a whole to implement, and it depends on the situation, who the people are we are in touch with. Whatever it is, we need to be proactive and we need to be ready to do more than we think it’s our job to do. Thank you very much, Nirmita.

Audience:
I’m so pleased that you got online in time to make your comments on policy. I think they are so essential. I will now ask Lydia Best to have a question or a comment, please. Thank you very much for the opportunity to add my voice. As we speak about nothing about us without us, therefore, I would like to disclose that I am deaf and I use cochlear implant. When we talk about technology and how it empowers us, it does, but it also disempowers. In this case, for example, when during pandemic the situation happened when everybody has gone online on the telephone lines, Google Meet was an excellent tool where we could very easily connect with each other and while not perfect, we were able to communicate. Mostly one-to-one. Text messages also help. For deaf people, sign language users, we know that we’ve got WhatsApp, video calls, we can use sign language. Great. When we meet, and Zoom has been mentioned today, when we meet at Zoom meetings, usually it is multinational meeting because I am representing European Federation of Hard of Hearing People and I work globally as well. When it comes to actions being involved, automatic captioning unfortunately fails us and often we are finding difficult to participate because we cannot follow what the discussion is about. Another issue is when the users are actually switching of the videos because the auto-captioning, if it’s used, is not correct enough, we need to support ourselves lip-reading. And that causes a problem. We need to actually disclose as well that we actually need someone, everyone to have their face shown correctly so we can follow. But the latest invention of Zoom is causing the biggest consternation. So Zoom has rolled out quite a few languages now in automated version. Great. Any user who is participating in the Zoom call can actually click the language they want. But do you know what happens? You suddenly have, say, someone using English language, someone else wants to actually follow Spanish language. And suddenly both of us see both languages suddenly showing up as the captioning. It creates massive confusion and lately we are forced back into using only human captioning in the international meetings because we cannot rely on the technology which actually disempowers us. Unless everybody uses just one language, usually it has to be English. So there are a lot of issues. And to me, this demonstrates the latest thing with Zoom, that Zoom did not work with persons with disabilities, with expert disabilities, and did not do the user research enough before actually putting this new feature out. And that’s something which is really distressing.

Gunela Astbrink:
Thank you. Thank you very much, Lydia, for those important comments. Is there any last-minute comments, questions from anyone else, please? And, Padmini, is there any comments or questions online? Gunal, this is Nirmata here. Is there a minute?

Nirmita Narasimhan:
I just wanted to add some more thoughts on previous discussions. And when we’re talking about nothing about us without us, and we talk about accessibility, and I just wanted to quickly mention that I think increasingly we feel the need for mainstream products to be more universally designed. I mean, even simple technologies around us that we can use. And what we need to understand is that just because it’s accessible, it’s not usable to everybody. There are different levels of users, and maybe somebody who’s an expert in technology can use something, but another person using the same screen reader or same captioning or same technology cannot. And we need to have that user-centric approach when we are talking about accessibility as well. So, yeah, with that, I just conclude.

Gunela Astbrink:
Thank you, Nirmata. I think that is a very good point to end on. And I wish to thank all our speakers online in the room. And, again, we unfortunately didn’t have our online speakers there from the beginning because of some technical issues with the Zoom links, but all the information is captured, and I’m sure that a point of view and everyone else who has participated in this session will have some very useful information to take home when it comes to digital self-determination for people with disability and especially for the gender focus on this topic. Thank you very much. Thank you so much, Gunilla. It would be great if, Padmini, you could share your concluding thoughts and comments. Great. Thanks so much.

Padmini Ray Murray:
So, yes, I think one thing that as somebody who both identifies as a designer and technologist, I think the biggest challenge that we struggle with is the fact that when we design and develop technology, we always tend to do it at scale. And this means that much more nuanced and individualized use is much harder to provide. And so I think this does require a kind of a paradigmatic shift in the way we think about creating a customized product. And I think something like AI might actually be the way forward, but we need to be able to kind of layer user interaction in such a way that individual users can toggle between different kinds of way of using and experiencing technology rather than foisting the same technology on everybody because that’s not a tenable solution. So I would urge those of you who are working in the field and, of course, people with disabilities who are affected by this to, you know, start those conversations and advocate for kind of more individualized and customized experiences rather than something one size that fits all because we know very well it doesn’t.

Gunela Astbrink:
Thank you. Thank you very much. And, Deborah, I think we’ve finished then. So thank you very much for this session, and I think we’ll conclude there. Okay. Thank you.