Jumping through hoops

This blog series features personal stories shared by the EPSRC-funded INPACT (Inclusive Practices in Assisting Collaborative Technologies) panelists, who will shed light on the challenges of disability inclusion and showcase the transformative power of accessible AT. By sharing their experiences, the panelists emphasize the crucial role of co-design in ensuring successful technology adoption for everyone.

When I was 5 or 6 years old, my family noticed I was different from my cousins and other children around me. I wouldn’t speak to anyone but my family and close friends, would hide under the table when people sang happy birthday, and tried to run off whenever I had to eat. In Portugal, my family tried to find answers to those differences, but a psychologist said, “she can’t be autistic because she has friends”. In high-school, I noticed I struggled to understand people talking more than my other colleagues, and after examination, I was told I didn’t hear well, but hearing aids were expensive, so the doctor advised to ‘just manage it’.

At 26 years old, I left Portugal to work in Austria, after years of mediocre grades in school and struggling to keep a job, hoping it would bring me more security. It was there that after complaining again of these difficulties, I was told I had a disability. It was the first time someone told me that word, but also the first time I put on hearing aids and realized how much I was struggling. A couple of years after that, and after years of using the Sheldon Cooper’s joke ‘my mother had me tested’, I got my Autism diagnosis (turns out Sheldon should’ve gotten retested as an adult). Since then, I added other diagnosis, including a physical condition that gives me chronic pain, that for years was considered ‘growing pain’, and then changed to ‘you work in the computer’.

Today, at age 33, I have been working for 4 years in the United Kingdom. Although my work is fortunately incredibly understanding and supportive, the healthcare system is not. Due to Brexit, all my diagnosis had to be retaken, and I can say not only I’m currently receiving no treatment or support for any of my diagnosis, but the barriers to get to them are kafkaeske1, as well as the 5 years waiting lists for some of my diagnosis.

Since I had access to hearing aids, an assistance dog, and tools to support me in my day-to-day, I started to thrive in my work and life. Although I still don’t get nearly as enough support as I need, having the ability to pay for some of the ICT that I use, allowed me to suddenly start having the ability to participate. Today, I opened an autistic self-advocacy organization in Portugal to ensure more autistic people get supported, and I work at the

European and international level on disability advocacy and policy. I’m now Vice-President of the European Council of Autistic People, and Vice-chair of the European Disability Forum’s Women Committee, and engage with international organisations of disability rights.

I couldn’t travel without my assistance dog, I struggled to follow conversations and lectures due without my hearing aids, I found commuting to work exhausting when I’m not working from home, have a lot of pain if I walk more than 15 minutes without my cane, and many other difficulties that became easier due to these changes. However, I’m one of the privileged ones since I’m in full-time work, while the ONS UK estimated in 2021 that only around 29% of autistic people are in paid employment2. Most people do not have the financial capacity to access them privately, and the fact that it was the only pathway available for me, besides my hearing aids, it’s devastating. BIPOC women, especially migrants, face an immense number of barriers that me, as a white European woman, never had to face. Intersectionality compound discrimination and barriers to participate in research and ICT development.

Having access to the digital world, also provided me with a community and information on how I could make these changes in the first place. Once I started to advocate for disability rights, I started making friends and having a supportive network of people that taught me how I could improve my life. Instead of ‘have you tried yoga?’ suggestions I was receiving in the real world by people with no knowledge on my conditions besides stereotypical movies and tv shows, I started receiving helpful and valuable tips by autistic and disabled people, that allowed me to start making the changes I needed, such as changing the background of websites to night mode since it is less overwhelming, for example.

Accessibility is the first step into participation. We can’t say that a wheelchair-user does not participate in conversation but have stairs to access the room in the first place. Even though physical accessibility is still not great, when we talk about accessibility and ICT or assistive devices to autistic, neurodivergent people, or invisible disabilities in general, the absence of knowledge or disinformation gets exponentially worse.

It is rare to include or consider autistic forms of communication and processing information in how ICT is developed, since these are still seen today as a behavioural issue, and not as a different cognitive and processing style.

It is also common to put everything into an ‘Autism’ package, when we are rarely only autistic, and normally other disabilities and conditions that also might impact on the devices and technologies we need. An autistic Deaf person will have completely different needs than a nonspeaking autistic person, or with a learning disability.

Since we are not included, I find a lot of the options that say to be disability-inclusive, are not. It is obvious when a tool was built without our participation, but then consulted at the end on how to make it accessibility, making it inaccessible, with a couple of features to look like it is. Disabled people are also not included in the people that decide where the funding goes, which means that academic research is funded not based on what we in the disability community need, but on what non-disabled people think it will make us more productive (normally a variation of how to cure us, fix us or prevent us).

We need to be urgently included not only in the development, research and creation of ICT and assistive devices, to ensure all digital tools, not only the ones specifically made for disabled people, are accessible and properly developed with our needs in mind since the beginning, but also be able to have a say on how the funding is directed.

We will not achieve this by consultation, but by leadership. Disabled people and their representative organisations need to be not only consulted or involved, but LEAD the research, development and creation of ICT and assistive devices. We can start by understanding that ‘experts in lived experience’ is not a volunteer work, but an expertise that also comes most times with professional expertise. A lived experience expertise comes a lot of the times with educational and professional background in areas that are indispensable for ICT, including advocacy, policy, and community knowledge, but disabled people are also doctors, professors, IT experts, and many more. We can’t expect to create safe and inclusive spaces for disabled people and their families to participate, and fight oppression, by having the oppressor to lead these spaces, independently of their good intentions.

The Cut-curb effect3 tells us that having accessibility features, such as cutting the curb for wheelchairs, help everyone else in the community, such as parents with baby strollers, travellers with suitcases, or delivery workers with trolleys. A more accessible ICT tools will help not only us, neurodivergent people, but also people with chronic mental health issues, who are in a burnout or have chronic fatigue, have migraines or headaches, or have less time to process information.

The disability community is the only minority where you or any of your loved ones can, and probably will, at some point, join. When we fight for assistive devices and technology to support us into having independent living and community participation, we are not just fighting for us, but for you too.

Discrimination, poverty, and human rights violations against disabled people will become worse with the further development of technology, but also with the increase in wars, humanitarian disasters, and climate change. Artificial intelligence regulations are being discussed and having an explosion in growth, but without us involved, it will further discriminate and punish disabled people by amplifying the stigma and bias existent in society.

More than thinking that we need to be involved or consulted in tools that are directed to the disabled community, we need to start understanding that we need to play a leading part in the development of all tools and technologies, their funding, regulations, and policies. Join us in changing the ‘Nothing about us, without us’ to ‘Nothing without us’.