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PhD Jo Bervoets: “Letting Tourette’s be?”

Jo Bervoets (UAntwerp) did research into Tourette’s from a theoretical and an ethical perspective.


“Letting Tourette’s be?”

Tourette’s is getting more and more in the news headlines, for instance when famous people like Billy Eilish open up about their diagnosis. “Tourette’s might be the new autism or ADHD,” says Jo Bervoets. “With the recognition that it is more common than initially assumed, its stereotypical portrayal can also be adjusted.” Bervoets’ doctoral research shows that acceptance of Tourette’s must replace mere focus on its suppression.
Tourette’s is named after the French neurologist Gilles de la Tourette who made the first diagnosis at the end of the 19th century. People with the ‘Gilles de la Tourette Syndrome’ (as it is officially called) have multiple tics. These are involuntary movements, such as blinking the eyes, as well as movements that cause noises, such as blowing raspberries. Jo Bervoets (Centre for Ethics, University of Antwerp) looked at current theories about Tourette’s and checked whether these were compatible with the experiences of people with Tourette’s.


Stereotypes and stigmatisation

Tourette is often and incorrectly identified with cursing. “A small percentage of people with Tourette’s do curse or act in other ways that are considered socially inappropriate or disturbing,” says Bervoets. “Whilst this is not something to sweep under the rug given it is a part of the experiences of people with Tourette’s, we should not narrow Tourette’s to this aspect only. If we do so, it quickly becomes a caricature that is too often exploited to get an easy laugh. In conversation with Touretters, as they often refer to themselves, it becomes clear that the stereotypical and stigmatising view is the main risk factor for their mental health.”

In the last decades, Tourette’s has been seen as an individual neurological problem. “This view is an advance over the moralizing ideas about tics when the diagnosis was still unknown. However, my research makes clear that reducing Tourette’s to ‘a brain condition’ does injustice to the experiences of Touretters. In these experiences the expectations of others as to what constitutes ‘normal behaviour’ take a central place. Not only do these expectations lead to social isolation, but they also increase the frequency and intensity of tics.”


Beyond the Catch-22 of Tourette’s

One of the Touretters interviewed by Bervoets strikingly catches this complexity: “Exams put me in front of an impossible choice: either to disturb others with my tics or to hinder myself by inhibiting them.”
To avoid such dilemmas, Bervoets proposes to look at Tourette’s through the lens of neurodiversity. “I am autistic myself and, thanks to the neurodiversity movement, a scientific revolution in autism research is already taking place,” says Bervoets. “Instead of focussing on what we are according to stereotypes unable or unwilling to do (like social interaction), autism is seen as a different, an atypical, way of dealing with our environment. Based on this research I propose that spontaneity, vitality, and an urge to get things ‘just-right’ (for instance: organising them in specific ways) are the basic characteristics of Tourette’s.” Does this mean that Tourette’s suddenly becomes a superpower? “No, tics are often painful and disturbing, even without an audience. But recognising that the environment plays a role in how Tourette’s comes to the surface allows us to gain a broader view on it. For instance, it helps in bringing the attention to how Tourette’s manifests differently in women or what connection it has with OCD and ADHD. And most importantly: when onlookers can let Touretters just be, then they actively contribute to their mental wellbeing.” This ‘letting be’ obviously does not mean that there is less need of diagnoses or support. On the contrary, it is only in recognizing Tourette’s in all its nuances that we can empower Touretters.

Name and contact details: Jo Bervoets, jo.bervoets@uantwerpen.be, +32476471298

To Whom Does the Future Belong? A NeuroEpigenEthics Online Interdisciplinary Workshop with Rachel Rosen and Judith Suissa


‘You can’t comment on the future if you don’t have children.’ Anyone who disagrees with this claim, or wants to understand the assumptions behind it, might enjoy watching the recording of NEE’s most recent interdisciplinary workshop.  

In this online workshop, UCL academics Rachel Rosen and Judith Suissa introduced the participants to the background and key arguments of their recent paper ‘Children, Parents, and Non-Parents: To Whom Does the Future Belong?’ (2020).

Remarks such as the one just mentioned suggest that it is often believed that being a parent gives one a stake in the future. At the same time, Judith explained that the future is understood quite differently in political philosophy. It is seen as either an inevitable continuation of the present or as a very distant, abstract horizon. The authors find both conceptions of the future lacking in critical function, so instead they urge us to call into question the normative basis of the present. They argue that the future does not belong to any group in particular. Instead, Rosen and Suissa understand the future as a collective intergenerational endeavour. They believe children, parents and non-parents together can and should challenge today’s injustices in order to work towards a desired future.  

After this thought-provoking overview, four respondents shared their thoughts and questions with the authors and the audience. Harriet Bergman started a conversation about what the insights in the paper might mean for efforts of social transformation. She wondered how speaking on behalf of the future might be different from speaking on behalf of others already being harmed in the present (e.g. by climate change) and invited us to think of the role of ‘prefiguration’ in this context. Leni Van Goidsenhoven introduced to the debate some remarks inspired by queer and crip theory. She touched upon ableism in popular imaginings of the future, Edelman’s No Future and alternative notions of kinship and community. This neatly connected to the next response by Lisanne Meinen. In her response, she addressed the potential of including non-human agents when imagining just alternative futures, as well as the possible role of art and fiction in imagining and producing these futures. The final response was formulated by Stefan Ramaekers, who wondered what kind of subject position the authors have in mind when they talk about a ‘we’ sharing a present, since our political and social reality seems to be that many of us do not live in the same present as others.

Rachel and Judith gave tremendously thoughtful answers to all of these responses, resulting in philosophical conversations that easily could have lasted much longer. Many thanks to the authors, the respondents and the other participants for making this such an interesting afternoon!

The NeuroEpigenEthics Family meets: Prof. Eva Jablonka

Unfortunately, Coronavirus required us to cancel our yearly team meeting where we would have been so very happy to welcome Prof. Eva Jablonka, one of the pioneers in epigenetic research and theorizing. Fortunately we had the opportunity of discussing her work online with her on the 5th of May 2020. We specifically focused on the book she wrote together with Prof. Marion Lamb: Evolution in Four Dimensions (2nd edition, 2014). It was a most lively discussion where the neurological and, mainly, the ethical were prominently present. We provide a very short reflection belo

w but not without first thanking all the friends of the NeuroEpigenEthics team who joined the discussion showing the value of interdisciplinary thinking: Luca Chiapperino (Science and Technology Studies, University Lausanne), Wim Van Daele (anthropologist, University Agder), Wim Vanden Berghe (microbiologist, University of Antwerp) and Sander Van de Cruys (experimental psychologist, University of Leuven). Covid-19 may keep us in a physical bubble, we remain determined to continue breaking academic bubbles!

We dug right in with a question on whether epigenetic effects should always be framed in the negative. The answer of Prof. Jablonka was as balanced as her work on evolution: she was not in favor of claiming epigenetics as the be all and end all of all science. She sees it rather as an additional tool in a truly transdisciplinary toolkit. On the one hand, we have to consider that there is a lot of unpredictability in epigenetic effects. A lack of stress following a ‘good’ lifestyle may well stabilize problematic effects while some stress triggers plasticity that enables learning and discovering better solutions. On the other hand, as is the core of the ideas in Evolution in Four Dimensions epigenetics really is the crossroads of biological and cultural drivers of evolution. As worked out in the paper Cultural Epigenetics (Jablonka 2016) this means one always has to consider, at least, these 2 perspectives. The example given was very much à propos the NeuroEpigenEthics mission: one can look at ADHD as a problem for which some microbiological cure is to be found, or one can look at it socially as an affordance opening up new potential. Biology has a place in both perspectives, but it will, in the second perspective, focus more on something Richard Lewontin called “meta-plasticity”. This perspective will avoid trying to fix things from a point of view of current standards and allow to be more open to creative opportunities evolution affords in creating new potential.

This discussion naturally led to a question on relation between epigenetics and normative issues. Prof. Eva Jablonka here first drew attention to the application of Waddington’s landscape metaphor (Waddington 1957) to the social dimension. A norm can in this metaphor be seen as a strong attractor canalizing the development of organism in a direction of what are ‘stable social arrangements’. In work she co-authored (Tavory, Jablonka and Ginsburg 2012) it is explained how for instance poverty can be self-perpetuating until some change (as fortunately has happened to some extent with feminism and homosexuality) to some of the key stabilizers takes root. Unfortunately, only a case-by-case interdisciplinary study of the broad epigenetic landscape can help to identify how to uproot oppressive stabilizers so no simplifying messages here. Still we can see that there always is a dynamic between the individual change agents and some level of collective responsibility (see our discussion on Iris Marion Young for a helpful way of conceptualizing this dynamic!). Again, epigenetics is not saying things are cast in stone but rather that wherever there is canalization there are, always also, permeable boundaries allowing evolutionary plasticity to overthrow attractors.

This use of the Waddingtonian metaphor invited a long discussion on how to understand it, and specifically how to understand interactions between the genetic and social dimensions as well as the possibilities for change afforded to individual agency. Prof. Eva Jablonka did in this discussion refer to the paper she and Noble published recently (2019) in which they tried (see photograph below) to extend the metaphor to show this interaction. In it, the lower pegs are the genes as per Waddington’s original drawing but the top parachute shows the social and environmental influence on development. This allows to visualize that we aren’t just canalized by our biology but that if we change social circumstances we can – and do – have an impact on this development. Feminism and queer studies in this way have had an impact on the development outlook of more than half of the world’s population although as regards poverty we clearly have much more to do to destabilize the dynamics.

A snapshot from our discussion: on the right the adaptation of Waddington’s landscape as per Jablonka and Noble (2019), on the left Eva Jablonka, Kristien Hens (University Antwerp), Luca Chiapperino (University Lausanne) and Sander Van de Cruys (University of Leuven). 

Our discussion went on for three hours and still there was much more to be said. Not only on the visualization of the epigenetic landscape (how to depict the complementary aspects of plasticity and canalization that were already the focus of Waddington’s original work) but also on how to translate these insights into the clinical and bioethical discourse, where the simplicity of the ‘traditional’ genetic model is still a very strong attractor for patients as well as clinicians. So we left it as a To Be Continued, grateful for Prof. Eva Jablonka’s time and happy that these are the very questions we pursue in our project. The last word we give to our guest: “The dynamic of stability always comes together with a dynamics of change.”

Jo Bervoets

References:

Jablonka, Eva. 2016. “Cultural Epigenetics.” The Sociological Review Monographs. https://doi.org/10.1002/2059-7932.12012.

Jablonka, Eva, and Marion J. Lamb. 2014. “Evolution in Four Dimensions.”, MIT Press. https://doi.org/10.7551/mitpress/9689.001.0001.

Jablonka, Eva, and Denis Noble. 2019. “Systemic Integration of Different Inheritance Systems.” Current Opinion in Systems Biology. https://doi.org/10.1016/j.coisb.2018.10.002.

Tavory, Iddo, Eva Jablonka, and Simona Ginsburg. 2012. “Culture and Epigenesis: A Waddingtonian View.” Oxford Handbooks Online. https://doi.org/10.1093/oxfordhb/9780195396430.013.0031.

Waddington, Conrad Hall. 1957. “The Strategy of the Genes”. London: Allen & Unwin.

Scratching a brick wall

Katrien Schaubroeck and Leni Van Goidsenhoven
(Centre for Ethics, University of Antwerp)
Original blog: A* Antwerp Gender & Sexuality Studies Network

On February 18th, on Audre Lorde’s birthday (to whom the lecture was dedicated), feminist killjoy Sara Ahmed talked to a full Kaaitheater about doors. More precisely about closing, slamming, hitting doors. The title of her lecture was “Closing the door. Complaint as diversity work.” She did not only talk about closing doors, but also about revolving doors, about brick walls and long corridors. She talked about how doors can be slammed upon you when you try to enter as being invited but not welcomed, or how you can feel trapped in a revolving door, hit by a brick wall, and disoriented in endless corridors.

Read moreScratching a brick wall