Hello and welcome to the video for our paper "ADHD and Technology Research – Investigated
by Neurodivergent Readers". My name is Katta Spiel and I'm with TU Wien
and I speak with my co-authors Eva Hornecker
Rua M. Williams from Purdue University and Judith Good - University of Amsterdam.
This work is presented at CHI 2022 and is funded in part by the FWF
(Austrian Science Funds) under the number T 1146-G.
You might wonder: What is this all about? Why do we need this? Why are you doing this? Well,
we are four researchers in Human Computer Interaction and we all four happen to have
ADHD and we were wondering how does the field of technology research generally
think about ADHD and conceptualize the condition.
But before we start, let's clear up a few concepts. First,
Neurodiversity, which refers to the diversity of neurological make-ups across populations
and emphasizes the diversity of cognitive processing or cognitive styles.
It kind of rejects the labeling of neurotypes as deficit or impairment;
by which we mean yes most people might be neurotypical, but we need that kind of variety of
people which are labeled with conditions to kind of function as humanity. One of the neurodivergent
conditions you might find is ADHD – Attention Deficit Hyperactivity Disorder. We don't really
like how the term disorder qualifies people ,so we only use the abbreviation for the time being.
Anyway, ADHD is officially characterized by hyperactivity impulsivity and inattention,
but it's better described as a difference in sensory processing and meaning making about the
world and we want to remind our audience that it doesn't change when people become adults.
ADHD is nothing you grow out of. ADHD is fundamentally rooted in a brain's neurology.
And, finally, critical disability studies,
which provided us with the lens for our research. That means, we wanted to understand how ADHD
is conceptualized as a disability within these works, how people talk about this and then further
understand the implications of these concepts on the technological artifacts that are built.
So we looked at all the papers that are in the ACM Digital Library Guide to Computing Literature
and concerning themselves with ADHD in one way or another. And we read those papers and then did
some inductive and deductive coding alongside notions of who participated in the research,
how did authors conceptualize disability, what was the research framing and disciplinary embedding
and what were technological aspects of the resulting prototypes and technologies.
We collected our corpus in 2019 and then extended it with papers published since in 2021.
However, in our core corpus, we had 66 papers of which half were pretty short. Think about the old
SIGCHI extended abstract format. That, to us, indicates that there is a lot of exploratory
work out there but not necessarily long-term projects that make it into a full paper stage.
Topic-wise most of the papers dealt with intervention or therapy.
That is 31 papers. Another 14 then looked into technological approaches to diagnosis,
whereas 4 only used ADHD as a narrative to discuss any kind of other technology not related to ADHD,
and three were more abstract or general. What really struck a chord though was how these papers
talked about ADHD. First of all, it's supposedly something individuals have to suffer from.
Also, several authors distinguish between ADHD participants and so-called "healthy" participants.
But not just that, it's also framed as a burden to others and that one hurt, because it's a bit
on the nose on some deep down fears when papers focus on how ADHD folks can have a "huge emotional
and economic impact on families: and in that regard taking us as a problem to be fixed
but not actually addressed as in a narrative token is almost preferable, albeit rude.
You see, in all this, we had feelings and let me interject here briefly as to why our emotional
responses are part of our work. Well, technically there is also the thing with impulse control,
but in this case we used it strategically because we think most of these researchers are not aware
of the pitfalls they fall in when using such language. That they are talking about colleagues
and people but reducing them to case studies and objects to be studied due to their undesirable
embodiment; reducing us to our undesirable embodiment. The affective responses illustrate
the interpersonal harm this can and might cause and serve as a reminder that technological
design should be humane, particularly when it comes to marginalized groups. But back to our
analysis. Turns out, when conducting design work in any kind of user-centered way, which
already wasn't a lot, people love collaborating with literally any expert who doesn't have
ADHD before engaging a person with ADHD. We are right here. Like, of course, inside and outside
perspectives might differ and meaningfully speak to each other in productive ways but for that
people need to bring in the inside perspective as well and not completely leave it out. No wonder
then that when ADHD participants were involved – largely as testers – they exhibited what we call
embodied resistance. For example, I quote from one of the papers, begin quote "the data from the user
study was unreliable because the children found it hard not to fiddle with the EDA electrodes"
end quote. Hence, ADHD children in digital sensor apparata both "out" themselves
through hyperactivity while simultaneously concealing the detail of their own biosignals,
disrupting the efficacy of algorithmic feature extraction and classification. And, by the way,
the technologies that are created are mostly wearables, EEG related or in smartphones and
sometimes augmented and virtual reality. However, their foci are largely on disciplining ADHD,
which largely means suppressing traits, which is damaging to mental health in the long term. And
specific purposes we identified lie in controlling body movements as in reminding people to sit still
with the same effect and also in diagnosing the disordered as in the search for automating
classification of biomarkers completely ignoring any kind of psychological diagnostic criteria,
which also consider for example individual support needs. We recommend involving people with ADHD in
research about them but also for technologists to look at concepts like Crip Technoscience,
which centers the work of disabled people as knowers and makers, is committed to access as
friction as well as interdependence as political technology, and finally disability justice.
For now though, thank you for engaging with our work on behalf of myself and my co-authors.