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Anne discusses how technology and video conference software became a tool for shifting power imbalances, against the backdrop of the pandemic. The topics in Anne's community story (empowering people and the power dynamics in research) were frequently reflected in the early analysis of the Embed EDI project.

Usability is power.

By Dr Anne Collins (21/09/2022)

Power for people with learning disabilities
Covid struck. Lockdown ensued. Research projects were put on hold by clients. Self-advocacy groups stopped meeting. From the worlds of people with learning disabilities, stories began trickling in of self-advocacy workers posting tablets and iPads and dongles through people’s doors before standing outside, miming through the window to show them what to plug where and how to use Zoom while also talking it through on the phone to the person or their family member.

In time, Easy Read guides abounded on how to use Zoom. Zoom was chosen for ease of setting up on a device and ease of use without hands on support. Unfortunately, early security concerns meant many social workers and universities had to use other video platforms – and these did not work so well for the people with learning disabilities I know.

As more people with learning disabilities become Zoom-savvy, a fundamental shift in power occurred. Before lockdown, most socialising, networking and planning happened in person and was arranged by support workers – who almost always did not have learning disabilities. Dependency was built into the system. With Zoom, at least a few people with learning disabilities discovered the liberation, independence and power of self-organising and networking across the U.K. and even internationally - without waiting for a support worker or organisation to arrange everything. One self-advocacy group’s weekly quiz became open-invitation to members of other self-advocacy groups. An amazing inclusive music project shifted from providing a local service into a U.K. wide celebration of equality, fun and musical subversion.

And then a few people with learning disabilities recognised the potential if they were host of a Zoom call. For the first time, they could mute people to make sure their voice was heard and not talked-over. Power and control were squarely placed in the hands of the host. Groups practised switching hosts mid-meeting so everyone could give it a try. With control of who had the Zoom link, who could speak when, and who was allowed in the meeting, people with learning disabilities achieved a power they had only previously dreamed of.

My biggest delight was with work. It is why I felt it was time to move on from Barod CIC knowing I wasn’t needed.

Barod is a cooperative working in the knowledge sector that was set up in 2013 by four of us who had met over a pint at a self-advocacy conference. By 2019, we had a few research and evaluation projects for clients, each with its own team including local people with learning disabilities who wanted to learn to become researchers.

Before lockdown, all the projects were geographically based. The logistics of trying to meet in person were insurmountable. This meant that I knew all the researchers with learning disabilities but they had never had the chance to meet or work together as one team.

What I discovered as projects were put on hold and we tried to build one core team using Zoom, was that the researchers with learning disabilities were interdependent. Together they did stuff by supporting each other. I learned the power of turning my camera off and muting myself so I was there if needed but not a visible presence. As they gained confidence in not checking what my face was saying, I gained confidence in their skills to complete work with minimal intervention from me.

Power for neurodivergent people
Personally, as an autistic person, the ability to manage my own sensory environment and reduced sensory chaos meant I could do three meetings in a day with ease. In the old days of face to face, one would wipe me out. The free Zoom lasted only 40min which built natural breaks into one to one meetings as we agreed to take 5 min before rejoining on a new link.

Meetings became easier to follow as people recognised more fully the need for a visible signal - the raised hand - to indicate they wanted to speak. The disadvantage to those, like me, unsure how to interrupt or when to join a discussion was reduced.

I also have ADHD. If I don’t speak when it comes into my head, I forget. The chat function meant I could contribute to the conversation as ideas emerged without disrupting the spoken conversation. This worked for me. It disadvantaged and excluded others who don’t read or who can’t continue two conversations simultaneously. To give a picture of how my multi-strand thinking works, I triple booked myself but was able to engage meaningfully in three online meetings on different topics simultaneously. The other side is that virtual meetings allowed me to stim (repetitive movements that help me process information and be calm and alert) and bounce on my seat without disturbing anyone – provided I have the camera off.

Shifting power
For me, the usability of hand-held devices and Zoom allowed a shift in power for at least some of us. It was not great for everyone. So many people spoke of Zoom fatigue. Digital exclusion is real, particularly data poverty. The shifts in power could not have happened without grants for devices and data.

When I think about equity, diversity and inclusion in relation to usability, what matters most to me is that at a time of extreme social isolation and fear, there was something simple enough for non-geeks to set up and for non-geek people with learning disabilities to be able to learn to use - and then be able to use independently. It matters that disabled and neurodivergent people could take part in meetings closer to a level playing field than ever before in their working lives.

To me, usability has made the previously impossible seem possible and then happen.