Shift Society Exclusive Inclusion?

The picture shows a typewriter with a piece of paper on which the word Equality has been typed.
People with disabilities still have to fight for de facto equality in many areas of life, even in an era of digital devices and possibilities. | Photo (detail): Markus Winkler © Unsplash

Why is the internet still full of barriers for people with disabilities? Or isn’t it? NGO founder Tiffany Brar, video influencer Daniel Jones, app developer Javier Montaner and researcher Shai Fuxman discuss the tensions between digital possibilities and their actual realisation – and what everyone in society can do.

By Elisa Jochum

At the round-table discussion

This article centres on your individual experiences and voices on the subject of digital inclusion and accessibility for people with disabilities. How do you relate to this topic?
 
Javier Montaner:
At our social enterprise Mouse4all, based in Spain, we work on accessibility for people with disabilities – people with physical disabilities in particular. We approach the world of inclusion from the technical side. We started four or five years ago when we realized how many people were excluded from digital life. Seemingly, everyone and everything has shifted to mobile interfaces – to smartphones and tablets; we all draw on WhatsApp or Facebook. But some people have been left out. We try to help people with disabilities to access all digital technologies that are currently available.
 
Daniel Jones:
I have a diagnosis of Asperger’s syndrome, ADHD, OCD and dyslexia. I run an award-winning YouTube channel with 130,000 subscribers and a larger social media outlet in the UK. Any platform that is available, we are on it. We run the website theaspieworld.com, but everything goes on social media. We distribute content for educational purposes, specifically for spectrum disorders. The Aspie World is a digital brand. I create content, speaking from my background, to help people or their children to develop tools, techniques and hacks for living life on the spectrum. We put out a ton of content – about twenty pieces of content a day.
 
Shai Fuxman:
I’m a researcher in education, emphasizing positive youth development. Based in the US, I work for the global non-profit company Education Development Center. I also connect to this work on a personal level. My daughter is on the autism spectrum. She also has epilepsy. As a parent, I became especially interested in the experiences of children and youth with disabilities. As a researcher, I’ve studied their experiences on social media. I have also teamed up with two colleagues who have a child and a brother with autism respectively. We are developing an app called Caregiver Navigator. It is designed to help caregivers – parents and other caregivers of children with disabilities – navigate through education and healthcare systems, which are very complicated, at least here in the US. By merely trying to figure out how to secure the right services for your child, you have a full-time job on your hands. It also takes a toll on you as a parent – the stress and the anxiety. Our app will be out shortly. I am excited to see how it can contribute.
 
Tiffany Brar:
I am from India, Kerala, and I am totally blind. I run a non-profit organization where we train blind people in interpersonal skills and to access technology. We also work with the government to foster accessibility and inclusion in India. India is a developing country and we struggle a lot with accessibility.

What are you talking about?

What do digital inclusion and accessibility mean to you in the context of disabilities?
 
Daniel Jones:

Tiffany Brar:
The three most important components of digital accessibility are content, navigation and design. We must be able to navigate all websites by using our screen readers. Videos should have closed captioning and audio descriptions. Furthermore, descriptive links are crucial and there should be large font sizes and compulsory alternative text for images. Especially here in India, a lot of services do not comply with the Web Content Accessibility Guidelines 2.0 or 2.1. Take Aarogya Setu, an app which the Indian government has developed during the Covid-19 crisis. When we try to use it with our screen readers, they go off. People with disabilities don’t really understand when you say “read more”, “click here” or when the screen reader suddenly crashes in the middle of the page.
 
When I speak of digital inclusion, I mean that people with disabilities should be included from the very beginning in the processes of designing applications and websites. Once the design is in place, you say “Oh, it’s not accessible.” Then, it becomes very difficult for developers and designers to go back and refashion the core of a product. You would still be looking in vain for this inclusion in the majority of developing countries.
 
Shai Fuxman:
I can add the social aspect of both accessibility and inclusion. My focus, again, is on youth. During that stage of development, relationships with your peers are highly important. As Javier said, especially for young people, such a large part of life takes place on mobile phones now, whether it’s Snapchat, TikTok or the latest app. For me, digital inclusion and accessibility are about making sure that children with disabilities are not only able to use these apps, but that they are part of the conversation – and that we teach children to accept people with differences; that we use social media in a way that is inclusive of everyone.
 
Javier Montaner:

This is a screenshot of Javier Montaner’s Facebook post which reads: “Digital inclusion means leaving no one out. It means that all of us have access to mainstream tools and apps. We don’t need a different Facebook or WhatsApp. The digital sphere is inclusive when everybody can use the same applications – no matter if they have a disability or not. Digital accessibility is synonymous with removing barriers whether they are physical or cognitive.” © Goethe Institut You can find the original post on Facebook.

Out with the old, in with the new? From analogue to digital barriers

The disability community, activists and researchers with and without disabilities discuss a series of approaches. In different terminologies and with varying emphases, several of these approaches highlight that existing barriers to equality and inclusion are not inherent in people with disabilities. Instead, society is organized in such a way that it creates those barriers. In the context of our discussion, this raises two fundamental questions: that of new opportunities and that of new risks in the digital sphere. How is the digital, on the one hand, helping to take down barriers established in the analogue world? What possibilities do digital devices and the internet create that did not previously exist? On the other hand, how might the digital produce a new set of challenges at the same time as it reduces others?
 
Tiffany Brar:
For me, as a person with visual impairment, some new features online have begun to dismantle barriers. When you come across a photo on Facebook, it says, for instance: “Image may contain four people standing, nature and sky.” You thus get a picture of what kind of image it is. But Facebook is only accessible via the mobile version, m.Facebook.com, not the desktop mode. Instagram is not accessible at all. On WhatsApp, we cannot reply to status notifications, we cannot hear certain things. Social media still abound in barriers.
 
Javier Montaner:
The digital is opening up new opportunities. The people with physical disabilities, with whom we work, have always had to rely on someone else to perform certain activities for them. But if they can access the digital world, they become independent. They can have the privacy they never had, such as writing and reading their own WhatsApp messages. Some users cannot read or write, but, drawing on stickers and emoticons, they communicate via Facebook. That’s a possibility technology has forged.
 
Daniel Jones:
I can provide several examples of how the digital sphere is encroaching on the analogue sphere and helping people with disabilities. The first is from friends of mine who are wheelchair users and employ wheelchair access maps on their phones. Such a map tells them, for instance, what stores have wheelchair access, so they don’t get stuck in a place where they can’t get anywhere. It gives them independence because they don’t have to rely on anyone else to assist them. They can figure out the routes themselves.
 
Another example is the Apple Wallet, which digitally pays for transport tickets and the like, straight from your phone. The same is the case for Uber. People on the autism spectrum have difficulties socializing. So picking up a phone and ordering a taxi can be hard for them, as well as dealing with money. My girlfriend does my finances because it’s difficult for me to figure out the organization of money. If you have to deal ad hoc with what money you can or cannot give a taxi driver, this can be very stressful. With apps like Uber, you’re literally just typing, telling someone where you are – you can see exactly where on the map that is – you don’t speak to the driver, you get in the back of the car, you get back out and PayPal takes care of the money exchange. Here, a model of digital tech has integrated itself in the analogue world. 
 
Tiffany Brar:
There are barriers, but it’s up to us if we want to eliminate them. Two days ago, I took an accessible UNICEF online course on inclusion. But, when I tried to participate in another UNICEF course on child rights this morning, they only provided PDFs, the screen reader could not navigate the text and the files featured so many pictures. The UN, which is behind UNICEF, has ratified the Convention on the Rights of Persons with Disabilities, the CRPD. Their own guidelines proclaim: everything should be accessible. Why does their platform offer one course that is accessible and one course that is not? If some of us write to them, however, pointing out that not everyone can access this course and that they are bound to change this according to the CRPD, Article 9, they will start thinking about it. People with disabilities find barriers and take action to lift them.
 
Daniel Jones:
Current data shows that fifty percent of all searches online are voice-first searches, that is, people use Amazon Alexa, the Google Home Hub or Siri. I optimize all my videos for long-tail keywords, for voice-first technology. Not only that. I publish content as a YouTube video and a Facebook video. All have closed captions. I also make a one-minute version of that same video for Instagram for people with ADD who can’t stand watching a ten-minute clip. They want to take the same information from a shorter video. Then, I produce a long-form blog post for someone who could be deaf or hard of hearing, so that they can read it, if that’s their preferred format. I also create a podcast for those who might be blind or legally blind. Additionally, we have an Alexa Skills Kit and, thus, you can get a small sound bite. By publishing content in every form, you cover all those issues – and that’s real accessibility.
 
Javier Montaner:
Accessibility doesn’t mean that all content needs to be accessible to everybody the same way. Sometimes it’s technically impossible, sometimes it’s too expensive or too time-consuming. Maybe I have a cognitive disability and I don’t need to read the entire book the same way as the author wrote it. I need to read it in a different way. Accessibility, to me, is when they have made a version of the book that I can read according to my cognitive situation. Artificial intelligence is progressing very fast in this respect, for example, automatic captions or the voice interfaces we mentioned. It’s incredible how they have improved in recent years – how Siri understands what I say even if I speak poor English and with a low voice.
 
Shai Fuxman:

Insults, TikTok and New Levels of Bullying

Shai, you mentioned cyberbullying above, which involves people’s experiences of abuse and isolation online. In 2019 and 2020, the video platform TikTok referred to the dangers of cyberbullying to try and justify its own discrimination against – and systematic exclusion of – people with disabilities, members of the LGBTQIA+ community and others. Might some of you want to elaborate on your perspectives on online harassment and how it affects the inclusion of people with disabilities?
 
Shai Fuxman:
Social media are a double-edged sword for youth with disabilities. On the one hand, they find support online. They come into contact with children that are similar to them and are able to connect with them in a way they couldn’t in person. On the other hand, our research demonstrates that children with disabilities are more likely to experience cyberbullying than those without disabilities – and that also leads to isolation, depression and suicidality. If you post insults on social media, hundreds of people can see them. Cyberbullying can thus have a stronger impact than bullying in the analogue world. Also, the digital world acts as an intermediate: because we are not face-to-face, it becomes easier to be hurtful. People don’t see the person they are ridiculing and, hence, forget how the abuse affects them.
 
Shai Fuxman:
You can access the original post on Twitter or by clicking on the embedded tweet.

Tiffany Brar:
If someone takes my photograph without my knowledge and permission, they are cyberbullies, too. That is a crime in itself. Some people even edit the images we post on Facebook. But other vulnerable people are also exploited this way.
 
Daniel Jones:
Management and admin staff of online services need to adopt a more active approach. YouTube does a great job of filtering out hurtful comments. TikTok is an interesting example. It’s funny that they should say they were limiting the reach of content to protect people with disabilities, when, actually, TikTok was allowing the so-called autism challenge to be broadcast. People tagged #AutismCallenge to videos in which they were dancing, while trying to make themselves look disabled even though they were not. TikTok permitted this horrendous form of ridicule to run rampant on their site.
 
I ran a campaign – I produced two videos and mobilized a lot of people to sign a petition to stop this hashtag. TikTok eventually took action. They banned the tag and people’s videos. But, along with that, they capped the general reach of the terms Asperger’s and autism, and thus of the community on this app – of people like me whose TikTok content is all about helping others. TikTok was basically saying: if you can’t take the bullying, you can’t take the platform. It is such a large and new platform. They need to reassess how they approach disability, ethnicity, race and gender. Otherwise they are going to have a really big issue on their hands.
 
Shai Fuxman:
I agree with Daniel regarding his point about TikTok. In our report about cyberbullying, we made several recommendations on how to end cyberbullying against youth with disabilities. One of those recommendations was for the social media platforms to take a more active role in monitoring the content and for them to use innovative technology to identify hurtful language. We know that this technology is already here – algorithms than can easily identify hurtful language. So the social media platforms, including TikTok, need to take a clear position on this issue and demonstrate this position by how they manage their sites.
 
Javier Montaner:
Technology in itself is not good or bad. The way we use it makes it good or bad. Social networks have got the power to promote inclusion through their terms of use and content curation. We, as responsible users, also have the power and the duty to opt out of platforms that ignore inclusion.

“Nothing about us without us”

Some of what you said above on opportunities, old and new risks correlates with a still common narrative that postulates: people with disabilities need to be helped – end of story. In this narrative of absolute passivity, there is no room for people with disabilities to be active forces. Technology prevents even the slightest participation, when, for instance, the contact forms of websites are incompatible with access tools. These sites preclude people from reporting and improving an inaccessible feature because the major means of communication itself is inaccessible. How to establish sustainable possibilities for the contributions of people with disabilities – to accessibility and far beyond (just as the British National Autistic Society is raising awareness on the job market)? In other words, would you like to expand on how people with disabilities can help define and develop the digital world? What are or could be strategies of empowerment?
 
Tiffany Brar:
There are a lot of people with disabilities who are working as accessibility trainers. They are testing websites and digital applications.
 
Tiffany Brar:

Javier Montaner:
I fully agree. Yet, I would say, this does not only pertain to India but also to Spain and many other countries all over the world. Developers are often not intending to do the wrong thing. There is simply a lack of knowledge. They need to become more aware. Sometimes we engineers think about crazy features that are very nice in a technical sense, but we forget about users – not only those with disabilities but in general. Lately, this has been changing. Entrepreneur Eric Ries has proposed the “lean startup” approach. Lean means that you develop new products very fast, but you are driven by the customer who is involved from day one of the project.
 
Tiffany, I get the feeling that you perceive the situation in India to be worse than in some other countries. What gives you the impression? Personally, I don’t have a disability and mine is an outside perspective, but my sense is that, here in Spain, things are also not as good as they should be.
 
Tiffany Brar:
India is a good country and I’m a hard-core nationalist, but there are a lot of ups and downs. India has one of the largest economies in Asia, yet people are simply not aware of the conditions for people with disabilities, even though India signed the UN CDRP in 2006. It has not been willing to spend the money needed for equal accessibility. I know blind people from the US, England or Germany. They don’t flag a lack of inclusion as much, whereas India is still following the charity model.
 
Web developers everywhere need to stand in our shoes – to think from the perspective of a person with disability, not in a sympathizing manner, but in an empathizing manner. Treat people the way you want to be treated.
 
Shai Fuxman:
An important and much-talked-about aspect in the disability community is the notion of “nothing about us without us”. Don’t do things for them but with them instead.
 
Moreover, when I talk about my daughter, I usually talk about how adorable she is, how she has a great sense of humour and she also has autism. As opposed to: she’s autistic, that’s who she is. In other words, changing the narrative requires that society no longer defines people with disabilities by their disabilities. If we transform the conversation so that we begin by talking about people’s strengths, we can appreciate much more the contribution they can make to society. That will help us realize that an accessible digital world is not only beneficial to people with disabilities but to society – because it allows them to bring their skills to all of us.
 
Tiffany Brar:

I would not recommend inaccessible websites to any of my friends with disabilities. Even my friends without disabilities, who are activists or inclusivity evangelists, would not visit those sites. Web developers should also realize that accessibility will win them more users and buyers.
 
Tiffany Brar:
The image is a screenshot of Tiffany Brar's post on Facebook, which reads: “Web services wrongly assume that people with disabilities will not have money to be buying customers on their beauty, shopping or travel sites. Even dating platforms, which are an important part of social inclusion, are not accessible. Many people without disabilities think: “Oh, but she’s disabled, who is she going to date?” Or: “How is he going to be fashionable?” These false notions should be deconstructed.  The same applies to erotic sites and pornography. People with disabilities have the right to view this content if they wish – just like people without disabilities. No matter what the content is, equality needs to be the maxim, not discrimination.” © Goethe Institut
You can find the original post on Facebook.

Daniel Jones:

Javier Montaner:
I want to stress once more that an accessible product or service is not only good for a person with disability but for everybody. If you caption your video, it’s valuable for a person who is blind and a person who is hard of hearing and it’s also valuable when you are on the bus and you cannot use sound. If you provide accessibility, you are not eliminating features; you are adding features. It is not about persons having disabilities, it’s the world having disabilities. If somebody cannot access a service in the physical or in the digital world, the issue does not lie with the person. The service is the issue.

Touch and screens

The internet is in a number of ways associated with spatial independence. It has been allowing some people to do their shopping from home and to work from anywhere, granting them greater mobility and access. At the same time, the devices for using the internet are material, as Herman, Hadlaw and Swiss remind us at the beginning of the tellingly titled “Theories of the Mobile Internet: Materialities and Imaginaries”. And, in “Disability and Haptic Mobile Media,” Goggin has asked: “[W]hat of many of us who wish to touch computer technologies with other parts of the body [than our hands]?”
 
Those physical devices for accessing the web need to be accessible themselves. Javier, how does your app Mouse4all take this material side of the internet into account?

 
Javier Montaner:

Speed; and money

The internet runs at a high velocity. For instance, the second that users visit a webpage, pop-up windows might surface. Within seconds, videos, sounds and adverts might start playing without asking (which can be particularly hazardous for people with photosensitive epilepsy).
 
In your view, does digital velocity generally constitute a barrier? Or can it also be conducive to accessibility? Has the question of temporality acquired a new dimension online or does the internet mirror the pace of the analogue world?

 
Daniel Jones:
People’s attention span is three seconds long, so they demand for constant updates. Everything has to be instant, regardless of whether we talk about the digital or analogue sphere. Users can, however, slow down their refresh rates on some digital applications, for example, on YouTube. Sometimes I speed videos up to twice or triple their regular rate and I can still digest the information as my brain is working very fast. Adding an accessibility factor to videos to vary their pace is thus really helpful.  
 
Tiffany Brar:
Online features must ensure accessibility as they are going faster and faster. Also, when customers make a payment on Amazon, they currently have to work through different windows until they reach the payment section. People with disabilities don’t want to use certain websites because it takes too long.  
 
Daniel Jones:
On my website, we sell items and we just upgraded it to take customers directly through to payment rather than putting them through a sixteen-step process. The reason why others implement such a process is add-on selling. When you already have your credit card in hand and are making a purchase anyway, you might just as well be willing to add more. It’s comparable to the cash register of any supermarket. They display numerous quick-sell bars tempting customers to think: “Oh yes, I need this snickers, too.”
 
Tiffany Brar:
A person like me would be very sick and tired of this, especially as these ads often appear as pop-ups in between. It’s very frustrating for a person with limited mobility or visual impairment or someone with a cognitive disability who cannot process too much content.
 
Shai Fuxman:
I would also like to point to the intersection between disabilities and socio-economic status, or financial resources. In the US, a lot of the technology that has been developed for people with disabilities is expensive. Within the disability community, the cost is creating a barrier for people with low income. To close the economic divide, technology in the US and around the world needs to be both accessible and financially available.
 
Javier Montaner:
We call this “financial accessibility”. We are a social enterprise but still an enterprise that needs to sell to survive. We have tried from the beginning to offer a low-cost product. Yet the market is not ready. Although fifteen percent of the world’s population have a disability, we are still facing a niche market. The interaction of supply and demand currently results in expensive products. Users, NGOs, the public sector and private companies – we all need to work together to make assistive technology available and affordable to any person that needs it.
 
Tiffany Brar:
Many people don’t understand the pinching point until they experience it. I know experts in the technical field who are indifferent. But when their mother or sister faces a limitation, they suddenly go: “Okay, okay, okay, my mother needs access”. Society needs to change and care beyond these moments.
 
 
Special thanks go to Thomas Heymel of the foundation Pfennigparade for his input.

Realisation online: Jörn Müller, Elisa Jochum, Svenja Hoffmann, Miriam Steller, Linda Hügel
 

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