@danielpjones
Crip-queer disability scholar + creative practitioner | Tourette Syndrome, Creative Research Methods, Public Space (+ more) | Bridging Fellow in Medical Humanities @durhamimh.bsky.social | Co-Lead @ndhumanities.bsky.social | www.danielpjones.com
If Neupulse is to be understood as “promising”, we need to extend the conversation beyond cure and towards centring disabled technology users themselves. We need a technoableist lens to be applied!
I argue that we need a shift in how these technologies are framed when talking about Tourette Syndrome, drawing on Ashley Shew’s concept of technoableism.
From soundproof masks, to muting tourettic people on Zoom, to algorithmic filtering of coprolalia, technoableism operates in distinct ways.
Tourette Syndrome is becoming an increasingly technologised experience. We see this in 'treatment options', especially wearable technologies designed specifically for tic disorders.
Neupulse is being positioned as a gold standard intervention to reduce tics and premonitory urges.
My latest paper is now out in Neurodiversity (Open Access!)
In it, I critically examine emerging technology-based treatment interventions for Tourette Syndrome, considering median nerve stimulation and the Neupulse device in particular.
journals.sagepub.com/doi/10.1177/...
Absolutely appalled at every single person involved in this. Once again, the tourettic community is being punched down at. Tourette Syndrome is not an excuse. We are not your punchline. Your ableism is showing.
www.youtube.com/watch?v=fkKb...
Daniel holds a bundle of pom poms of varying colours and sizes to his chest. He is tensing his face, and lifting his knee to his chest.
Tomorrow marks the start of a week spent at the wonderful 'The HopBarn' for my Artist's Residency! Looking forward to drifting around rural spaces, choreographing with #tics, and #DJing rural soundscapes to explore the role of rural affect on my tourettic body 🕺
#Dance #AcademicSky #TouretteSyndrome
Can we also include the postgraduate loan in this, which has been frozen at £21k repayment threshold at 6% since it was introduced
It seems like a lot of 'experts' on Tourette Syndrome are coming out of the woodwork since the BAFTAs, though it's strange that they seemingly can't even spell 'ticced' or 'Tourette Syndrome' properly, let alone understand that tics are involuntary 🫢
Stealing from the needy to line their own pockets – DWP hands out £12.7 million in bonuses, up from £11.2m last year.
I really appreciate this TikToker with Tourette syndrome, Shay, for taking the time to educate so many of us (including me) about her disability and coprolalia in light of what happened at the BAFTAs with John Davidson when Michael B. Jordan and Delroy Lindo were on stage.
I learned a lot.
Tonight, I Swear won "Rising Star", "Best Lead Actor", and "Best Casting". This is awful, awful news.
'Best Casting' implies Tourettic characters can/should not be played by tourettic actors. The others reward active choices to not cast disabled people.
What a disappointment
Drop the charges.
🇵🇸
Calls grow for Labour to lift the proscription of Palestine Action, after court finds the decision was unlawful
Bridging Fellow @danielpjones.bsky.social has published a commentary in the journal Neurodiversity titled ‘Centring Tourettic Experiences in Technology: Tourette Syndrome, Median Nerve Stimulation, and the Role of Technoableism in Self-Harm and Stigma’.
See more:
"Why is this device even an issue?"
I present to you, my latest Open Access paper! Here, I approach Neupulse (and median nerve stimulation more broadly) through the lens of technoableism.
journals.sagepub.com/doi/10.1177/...
#TouretteSyndrome #Tics #AcademicSky #DisabilityStudies
Still seeking participants for my PhD research on neuroqueer youth digital resistance practices! (ERGO: 103967)
Know someone who’d be interested?
All info is at linktr.ee/nqresearch.s..., or email me with any questions at ✉️nqresearch@soton.ac.uk
I'm delighted to share details of the first of two workshops I'm hosting this year on The Senses and Medical Humanities. The first workshop will take place in Durham on 24 February. Spaces are limited, so reserve yours now.
www.eventbrite.co.uk/e/the-senses...
It’s your last chance to sign up for the WAARC webinar on “Organisational accountability on disability in the workplace” with Deepa Shastri and Faye Stewart at noon GMT today! buytickets.at/wellcomeanti...
On this note, I've just had word that my paper on this so-called treatment is now in-press! "Centering Tourettic Experiences in Technology: Tourette Syndrome, median nerve stimulation, and the role of technoableism in self-harm and stigma" will be out soon. Watch this space, stop electrocuting us.
#CrippingResearchCulture now has 4 BSL translations provided by Marcel Hirshman of Weald BSL: sheffield.ac.uk/ihuman/waarc...
I fear that should this film win these BAFTA categories, it will do nothing but enforce the idea that electrocuting tourettic people into neurotypical submission is 'fine', that tourettic actors do not belong in the industry, and that filmmakers can get away with perpetuating dangerous narratives.
Lots of folks disagree with me hugely, but I say that regardless of the fact this story was based on the life of someone in the TS community, perhaps we do not have to settle for representation, but for good representation. We need TS media where the conclusion isn't that our existence is an issue.
For a film that has a story largely focused on finding acceptance regardless of tics, it ends in a documentary-styled promotion for Neupulse which encourages folks to self-administer electrocution to minimise tics. Ethically questionable, yes, but also evidence of poor writing and confused messages
The lead character has Tourette Syndrome. They decided to cast somebody who does not have Tourette Syndrome (or even a tic disorder for that matter) as the lead. Tourettic people were, however, given the 'privilege' of being extras in the background. This does not count as inclusive casting.
'I Swear' has made the BAFTA Longlist for 6 awards this year, including 'Best Film', 'Leading Actor', and 'Casting'. As a disability scholar focused on Tourette Syndrome, and a tourettic person myself, here's a couple of my concerns in a short thread...
#TouretteSyndrome #BAFTA #Disability
A new episode of #CrippingResearchCulture with Stuart Moore of @nadsn.bsky.social has just dropped wherever podcasts can be found!
open.spotify.com/episode/5Q7r...
Full transcript here: sheffield.ac.uk/ihuman/waarc...
disabled people who cannot work deserve good things too.
This is awesome news! Congrats! 🙌
Monday mornings look like:
‐ The same job rejection being sent to me for the fourth time, just in case I'd forgotten
- My local café running out of ALL dairy-free milk
- A bird deciding to poop on not one, but both of my shoulders
Big sighs all around! 🫠
On Monday 24 November, the Moving Bodies Lab Bridging Fellow @danielpjones.bsky.social facilitated an international roundtable titled ‘Towards Tourettic Studies: The Future of Tourette Syndrome Research’.
Read Daniel's recap of the event here: medhumsplatform.org/towards-tour...
