Tics and tech
After being diagnosed with Tourette Syndrome at 25 years old, I did what any normal hypochondriac does after a diagnosis - scour the internet for online communities where I could wallow in my slightly-broken brain. I had experienced severe tics during my teen years, which had calmed significantly in adulthood but still remained curiously present in the background.
Despite the years of tics, a diagnosis of Tourette Syndrome had never occurred to me - so, here I was, in a brand-new world, desperate for information and communities to build my new identity around. In my youth, my tics had been a painful and confusing source of shame. As a freshly-diagnosed adult, I was armed with information on what was happening to me, but with this came a constant awareness of how my neurological condition affects various aspects of my everyday life, from work and alone time to social activities.
Socialising as a person with Tourette Syndrome is a mission in itself, but in an online environment there is an entirely different set of obstacles. My issues using a keyboard mean that I often make typos or take a long time to type messages; lately I have developed a new problem in which I press enter too soon, and send friends messages solely consisting of the word ‘it’. At a time when video calls are becoming more ubiquitous, I often opt for audio-only as I am self-conscious about ticcing on camera; tics can prompt accusations that I’m not paying attention since my eyes often wonder, or I turn my head to look at what turns out to be nothing. Using face filters on Instagram or Snapchat is a whole other beast; staying still long enough for the app to recognise my face is sometimes beyond my capabilities. It’s frustrating to not be able to enjoy various forms of media; playing certain video games becomes difficult if they require any kind of precision. Even streaming movies to watch with friends can be disrupted by my incessant clicking of the playback buttons. My ability to have fun is impaired.
Despite my art often focusing on accessible technology, my condition has sometimes hindered my own creativity. As a YouTube publisher with mild success in the early 2010s, I posted videos of piano covers of popular songs and was met with comments such as “If you’re supposedly playing this without sheet music, then what do you keep looking up at?” or timestamps of points when I wiggled my shoulders. I often explained these away with vague excuses of being distracted by people walking past my window, but at the time of posting those videos I was at a loss, having not yet received a diagnosis. More recently, in a video interview during an exhibition for my piece Cinematica in early 2020, I was mortified watching it back and discovering that my eyes were constantly darting around, my inability to retain eye contact suddenly very apparent. I looked hypomanic and uneasy (which, frankly, I probably was), and this was not the look I wanted to portray as a competent, professional artist. I posted it with a light-hearted comment about the eye tics in an effort to seem self-aware and humble, but inside I desperately wanted to bury it.
Much of my live art involves the use of the Muse Monitor, a commercial brain monitor headset that records EEG brain waves. Due to the fact that it uses dry sensors and more generally speaking is not a medical grade piece of equipment, it has a large risk of picking up ‘noise’ (data that might interfere with the actual waves coming through). This noise often consists of head movements and blinks. Therefore, my performances with the brain monitor often use unreliable data due to my small movements frequently occurring. Whilst this is usually something that only I am aware of and troubled by, it becomes an issue, for example, when these waves are sonified and significantly different sounds emerge, that the public attribute to sudden changes in brain activity and mood, which are more likely caused by excessive blinking on my part.
I have tried for a while to use my own skills in programming to find solutions to some of the problems some other people with Tourette Syndrome have encountered. One particular case that struck me with sudden heartbreak was that of a man who had been an artist and had to give up his practice of drawing, due to motor tics that prevented him from holding a pencil and drawing with any kind of precision or accuracy. Feeling determined to do something about this situation, I set about with learning about various technologies that can help people with physical disabilities. My ultimate goal was to use an Axidraw plotter in combination with an EEG monitor to send brainwaves to the drawing bot, so that physical art could be created, hands-free, in real time.
I undertook a residency through the organisation Talking Birds in Coventry during the summer of 2019, during which I spent time creating Cinematica, and went on to present the project at two exhibitions since then. Participants were invited to wear the EEG monitor and watch as their drawings were created, and were given the chance to take their drawings home. The project is still in continuous development, and I hope to create more aesthetically pleasing drawings, with other means of controlling them such as eye tracking or facial recognition.
Two years after my diagnosis, rather fittingly, my own motor tics worsened and my dexterity was impaired. Up until this point, I had been heavily medicated with various antidepressants which had improved my Tourette Syndrome and largely minimised tics. I withdrew from the medication in mid-2019 (shortly after my residency) and since then have seen my tics increase. At this point, I decided to try and turn my efforts towards my own tics, to see if the solutions I worked on for others could also help me.
In order to use my own digital solutions, I would have to set up the programs, and this was hindered by my difficulty in using a computer. My aforementioned habit of clicking on the wrong things or closing down windows often causes me to lose important data. The new tics that appeared, however, had me constantly tapping the track pad on my laptop, which was noisy enough to disturb people around me while I was working (as well as myself), and again triggered the issue of unwanted clicking. I looked at physical barriers, such as wearing gloves to type which were made for using touchscreens, but these were too restrictive to type in and I found myself trying to tap the edge of my laptop regardless. I briefly considered speech-to-text technology, but I know that for many sufferers of verbal tics this would not necessarily be optimal and could prove to be even more long-winded.
So began the hunt for accessible technology for Tourette Syndrome. Months after this problem began, I realised that a mouse might be a good start at moving my hand away from the problem zone of my laptop trackpad and keyboard, leaving me less opportunity to tap. I looked at mice online, searching in particular for ergonomic mice, or mice made especially for people with disabilities. Although there are many different types available now, with innovative shapes and features, many of them would not help my situation at all; most mice either still have to be moved around, which I could see becoming an issue in terms of space and also in encouraging me to develop more repetitive and compulsive movements. Another option was a mouse with a trackball, which eliminated the need to physically move the whole mouse itself. However, trackball mice still had a big enough surface area which I knew would be tempting to tap.
The mice that I eventually came across were handheld, similar to a video game controller or perhaps a presentation pointer device, except it contained a trackball, a trigger in place of a left click, and other buttons to help with different actions. I immediately bought the cheapest one to try out (which already was £16.99 and therefore more expensive than the cheapest of regular mice). On trying it, I discovered a huge difference. I was able to sit further away from my laptop, and the fact that I gripped the mouse rather than leaving my hand resting on it, meant that my hand didn’t have enough movement to start ticcing, but still had enough proximity to the buttons and trackball to be precise. The only major problem was that scrolling didn’t work in all applications, but I noticed that more expensive models included a specific scroll wheel and would presumably solve this issue, so I bought a pricier mouse and had even better luck. Of course, the fact that the mouse is handheld meant that I also had to learn how to type with my left hand only, so that I wasn’t continually putting down the mouse every time I wanted to type even a short message or URL. At the time of writing this, I am typing with my left hand only with my mouse attached to a lanyard for easy access.
This happy discovery caused me to think- where are all the technology solutions for people with motor tics? People with an inability to stay still struggle with the most basic tasks, yet it took me a long time to find a piece of technology to help with just one of these tasks, and to program an art piece to help with another. On sharing my discovery with others in the Tourette online community, I asked if there were other issues that they had with navigating computers. Many said that they did, but had not found a solution. I eventually realised that many people with Tourette Syndrome had not considered that there might be resources out there to help them complete everyday tasks- they had simply assumed that, as with many disabled communities, the world around them was inaccessible. The first time I mentioned my tapping problems, a few people suggested fidget cubes, or wearing gloves, but nobody mentioned anything within the actual technology itself that could solve the problem, rather than just distract from it.
In my research, I only found one other resource that might help these specific issues with technology and tics; one person had mentioned that they had problems with clicking, often clicking too much and when it was not needed or damaging to the mouse. I found some software that helps reduce clicking by allowing the user to simply hover over an item on the screen for a brief time and then click after a certain number of seconds on their behalf. A lot of these programs are either free or paid for with an initial free trial, however they are also difficult to learn and do not always work with certain settings, such as one tool which only worked in windowed applications and not in full screen. I have, to date, found only three pieces of software that reduce clicking, three brands of handheld computer mice, and one long-winded solution to creating hands-free drawings, so there are still seemingly few options.
I still struggle with playing musical instruments, as I expect others do, and am continuously striving to find a way around this. There are organisations that work specifically to produce accessible musical instruments. OHMI provides adaptations to acoustic instruments to make them accessible to those with physical disabilities, often adapting instruments to make them playable with one hand. Integra Lab and Drake Music use technology to empower people of all abilities to play electronic music.
Although these efforts to make various forms of music more accessible are cause for optimism, it is nonetheless frustrating that these resources do not extend to other areas of everyday technology. When I try and voice my need for accessible technology, I am often met with answers such as, “We can’t cater to every single person.” People are willing to believe that movement disorders and physical disabilities affect so few people that they should be considered an insignificant factor in the production of technology, but in reality there are approximately 300,000 adults and children with Tourette Syndrome living in the UK (as reported by the charity Tourettes Action). It should not be considered selfish to request access to the same basic tools as able-bodied people. The community needs better resources and clearer advice on how to navigate everyday tasks, but most of all we need the confidence to finally ask for the support we deserve. I am hopeful that my current tics are transient and that I can soon move on to a new set of priorities, but for the time being I will continue to use this time of investigation to support my fellow ticcers.