The Science March: Can science-based advocacy be both nuanced and effective?

By Jennifer Lee

Jenn Laura Lee is a PhD candidate in neuroscience at New York University. She is also a member of the Scientist Action and Advocacy Network (ScAAN.net), which offers pro bono data science and research to organizations seeking to implement positive social change.

I believe in protests. I attend them, I endorse them, and I think that they make a difference. Raising political consciousness in the scientific community in any form seems like a good thing. The Science March moreover seems like a great opportunity for a community of people sharing common livelihood to advocate for the importance of their work in policy-making, as it relates to nuclear non-proliferation, climate change, vaccination, and so on. 

But while I plan to attend the March for Science in New York, I’m hoping to use this article to examine, articulate, and hopefully mitigate the slight unease that’s been growing in me surrounding some of the language that scientists have been using to describe the march (both critics and proponents alike).

Let’s start by pointing out that protests are effective for a number of reasons— they can apply pressure for lawmakers to advance specific aims (for instance, the passing of a bill). They can also act as a springboard for awareness— a starting point for deeper and more nuanced dialogue. In absence of particularly well-defined specific aims, the Science March might function primarily in service of the latter objective, among others.

Critics like Robert Young have tried to pin their unease on bad optics — they worry about a perceived “loss of objectivity,” or the so-called “politicization of science.” These critics fear we will lose our moral high-ground as calm and objective voices of pure reason in the public eye. We’d also be putting a target on our backs for further budget cuts, the argument goes. 

This stance has received ample backlash. But I’ve been equally struck by cringe-worthy statements made by proponents of the march. Many march leaders are attempting to sanitize themselves of the crazy mess that is American politics by insulating the Science March in a double-walled vacuum of objectivity. “This is a protest, but it’s not a political protest,” Jonathan Berman (a lead organizer of the march) proclaimed to the New York Times. I fail to see how a protest of any kind could be deemed apolitical. (Perhaps he meant “partisan”?)

A march sign at NYU.

Let me express that, unlike Young and Berman, the politicization of science is not the source of my unease. Like many others, I deeply reject the notion that science is apolitical, or that it ever could be. Researchers know this all too well from the ways in which academic hierarchies, granting agencies, and prestigious journals can make or break careers and shape the direction of a field, and from the way that scientific advancements simply cannot be divorced from their social, economic, and ethical repercussions. Best of all, we know this from the way funding is allocated to researchers by private and government institutions with obvious agendas. I’m comfortable in the notion that “doing science” is an inherently social and political endeavour (which aims for and approaches objectivity asymptotically)— and I believe it’s best for scientists to embrace this idea.

Rather, I think my particular flavour of unease stems from a strange hypothetical image I have in my head, in which scientists advocate for nuanced discourse and sober reasoning by blasting platitudes about the importance of “facts” through a megaphone.

“We are trying to reach [Washington] with the message: You should listen to evidence,” Dr. Berman proclaims. While obviously a message I endorse, it is important to remember that evidence is not itself a deciding blow in public discourse, but rather the foundation for more nuanced discourse of its kind. 

Something about the proclamation “Believe me, I’m a scientist!” seems deeply ironic and actually quite antithetical to the scientific process itself. This kind of black-and-white language surrounding fact and fiction, real news and fake news, moreover seems to be part of an alarming trend in which both laymen and politicians alike gesture vaguely towards an anonymous “body of work” to frame their claims as objective truth in public discourse. As scientists who make their living through nuanced thinking, we must do better than this when communicating with the media.

Of course, in Trump’s America, I understand the need for bold, argumentative stance-taking. I support people who will march with banners which will simply proclaim that “Climate Change is Real!” But while I understand the temptation to reference some substantial “body of literature” to support this conclusion, we must be willing and prepared to engage the public on a level much deeper than this. To do otherwise would not just erode the public image of scientists on face— it would be deeply contrary to the scientific process itself.

So for the sake of preserving the spirit of the scientific process, let’s not underestimate the willingness of the general public to engage with real nuance and more complex critical thinking. My suggestion for the march is to not just bring signs with catchy battle cries— bring pamphlets with real content, or at the very least, arm yourself mentally with the specific papers and evidence on which you’ve built your conclusions. Ironically, science advocacy on a shallower level than this might itself be a-scientific.

Image courtesy of Flickr.

Moreover, rather than professing objectivity, insist on and celebrate the inherently social (and subjective) nature of scientific discourse. Science is a social endeavour, and that's not necessarily a bad thing. I can’t say with absolute certainty that climate change is anthropogenic, but I can say with an incredibly high degree of certainty that it probably is, because of the communal nature of the scientific process. I’ve never measured CO2 myself, but I base my conclusion largely on the social and academic institutions we have in place, which are comprised of other people who have recorded a variety of natural phenomena. They’ve printed and disseminated their data through reputable publishing companies, and their conclusions are made available to me through some man-made search algorithm on Google Scholar. It’s in large part because of my prior beliefs on the trustworthiness and reputability of all of the above social institutions that I’ve come to conclude that climate change is very, very likely to be anthropogenic and real, and that we should normatively take policy measures to ameliorate the sad mess that is our environment. 

Of course, I recognize that the nature of protests is to distill nuance down to simple and actionable messages. I understand the hunger for true objectivity in a world of "alternative facts." But the uncomfortable irony is that scientists lose a little piece of their integrity when we advocate for some “objective truth” with a kind of ‘hundred-percent confidence’ which, we all know deep down, we’ve never genuinely experienced in our labs first-hand. 

So my proposal is this: let’s march, shout, protest, and be heard, but let’s also not lose the spirit of certainty, uncertainty, and nuance which makes science scientific. This balancing act is hard to do, as I’ve experienced first-hand. But we must remember that the spirit of nuance which makes our profession at times so infuriating is also so simultaneously sanity-preserving in Trump’s garish world of black-and-white. 

Lastly, let’s not underestimate the capacity of the general public to engage with complex and nuanced evidence, when paired with effective communication. Come prepared with communicable data and let's educate ourselves about the issues that matter, together.

My professor will be marching with a sign that says “Are you with Reason or with the Republicans?,” and another will simply say “PRO-FACTS!” How effective these signs are is a matter of open debate.

I personally had a hard time deciding on which particular science-related social issue to write about on my sign, mostly because everything seems so incredibly urgent. In the end, I think I’ve decided to bring pamphlets with some of my favourite public-friendly figures highlighting neuroscientific evidence in favour of raising the age of criminal responsibility. It highlights thorough but easily digestible research which is proximal to me, and which I think advances an important social cause.

As for a catchy rally cry, I think I’ve decided on a sign that will simply read “MORE NUANCE!” 

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Lee, J. (2017). The Science March: Can science-based advocacy be both nuanced and effective? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/04/the-science-march-can-science-based.html

200th Post! Why is Neurodiversity Useful?

Neurodiversity is a term that was coined by Australian social scientist and autism advocate Judy Singer. In her 1998 thesis, she wrote: “For me, the key significance of the ‘Autistic Spectrum’ lies in its call for and anticipation of a politics of Neurological Diversity, or what I want to call ‘Neurodiversity.’ The ‘Neurologically Different’ represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability.”[1] Similar to the way biodiversity is discussed as critical to the stability of the ecosystem, neurodiversity is considered to be critical for human and cultural stability. In other words, Autism Spectrum Disorders (ASD) and other neurological differences should be a part of our community and, thus, neither cured nor subject to intense rehabilitative or normalizing efforts. Before I discuss how neurodiversity is useful to my work and to ASD-related professions, I want to quickly review ASD and my current project for the Neuroethics Scholar Program.

Source: Cafe Press

ASD is traditionally defined as a neurodevelopmental disorder that affects a person’s social and communicative style and includes frequent displays of specific behavioral patterns.[2] There is a huge range of autistic expression, from significantly impaired to subtle displays of autistic characteristics. As the Neuroethics Scholar at Emory’s Center for Ethics, I am working on a project at the Marcus Autism Center exploring how to communicate the results of future infant screeners for ASD to parents. This project was described in The Neuroethics Blog on October 1, 2013. A neurodiverse perspective informs my work in two important ways: shaping the language I use to talk about ASD and ensuring I maintain a focus on the quality of life for ASD individuals and their families. I believe that neurodiversity can be similarly important for all professionals working with and studying ASD or related disabilities.

In American civil rights movements, there has always been a linguistic focus—people pay attention to the ways individuals with different racial, gender, sexual, and ethnic identities are labeled and described. This language changes over time, becoming more appropriate and representative. The disability rights movement also works to change the way disability is spoken about. Neurodiversity is a part of this movement, and so advocates are thinking about and promoting respectful ways to talk about ASD and related disabilities. As a whole, the disability community argues for the use of a language of difference, not deficit. For ASD, this means saying individuals have different social interaction styles, rather than “deficits in social communication and social interaction,” or prefer adhering to a specific routine, rather than “inflexible adherence to routines.” The statements communicate the same thing, however the latter is linguistically demeaning and suggests autistic people are broken or somehow less than those who are not autistic.

My use of the phrase ‘autistic people’ is also informed by neurodiversity. In the field of disability studies, there is an ongoing conversation about the use or nonuse of ‘people first language.’[4] This approach attempts to verbally demonstrate that a person is more important than the disability by using phrases such as ‘person with a disability’ or ‘person with autism,’ thus rejecting the notion that a disability subsumes a person’s entire identity. This inaccuracy is most pronounced in phrases like ‘an autistic’ or ‘autistics.’ However, there are many self-advocates who prefer the use of the term ‘autistic person’ (and also ‘disabled person’) because autism is a central element to identity formation and the phrase ‘people with autism’ seems to serve as a reminder to others that autistic people are, in fact, people. As a result of many interactions and conversations with friends and colleagues who are autistic self-advocates, I now rely primarily on ‘autistic people’ with the understanding that this phrase is meant to respect the identity of autism. 

Source: Zazzle

In this way, neurodiversity draws attention to the ways we describe autistic people that serves to stigmatize and separate this community from the non-autistic community. Eradicating this stigma by focusing on the improvement of the lives of autistic individuals rather than finding cures for or rehabilitating autism as a primary tenet of neurodiversity. This is a fairly controversial topic in the ASD community. Many parents believe that neurodiversity fails to account for autistic children who are significantly impaired. Working towards acceptance, they argue, does not help them or their children who are significantly impaired and may be engaging in self-harm, difficult to communicate with, or having persistent sleep or eating difficulties. These parents want to find ways to alleviate the most significant autistic characteristics because they and their children are living stressful and exhausting lives.

I argue that neurodiversity is useful for these families as well. Neurodiversity does not promote allowing children to continually harm themselves or families to go without sleep for days out of respect for the neurological difference of the child. Neurodiversity means improving the quality of life for autistic people and their families. An autistic person who has not developed a reliable communication method, verbal or otherwise, would benefit from learning how to get her preferences, needs, and emotions expressed. This often does involve educational techniques and interventions. Similarly, some autistic people want to work on their social skills with explicit social skill instruction. This, however, does not mean that all autistic people should be subject to intense social skill instruction regardless of their desire to make and keep friendships.

Focusing on the quality of life of autistic individuals and their families does not mean leaving them alone until the surrounding community develops a more tolerant and accommodative environment. It means discovering ways to ensure that the autistic individual has a primary role in his life decisions. It means ensuring autistic individuals are employed in environments that respect and utilize their differences and skills. It means setting up school and adult environments where autistic individuals can thrive, feel comfortable, and learn. It means finding ways to support families and caregivers of autistic children and adults so that they can focus on loving and supporting the autistic people in their lives, rather than the frustrations of finding and fighting for appropriate and supportive services and environments. 

For my current project, relying on neurodiversity will result in suggestions to ensure that telling parents about the possibility of a later autism diagnosis is done in a supportive and realistic manner. This includes not suggesting that the introduction of autism into their lives will destroy the family that they want or expect and that information about ASD is provided using language that is respectful of autistic people and their families. This information should be provided in a reciprocal, ongoing dialogue about the future of a child and the family that answers caregiver questions and directs them towards useful resources and services for both the child and entire family.

For me and my work, neurodiversity means working towards a community that respects and interacts with autistic people and people with intellectual and developmental differences. But it also means that, while working towards this goal, researchers, clinicians, and educators can and should focus on developing immediate and sustainable ways to improve the qualities of life of autistic people and their families. Neurodiversity should be presented to professionals, parents, and the public as an alternative narrative about ASD that could supplement the more medically-oriented, cure-focused way of thinking about ASD. Thinking through these approaches is where neuroethics, bioethics, and neurodiversity can come together. Although the approaches seem contrastive, there is an important common ground—that of ensuring autistic individuals and their families lead fulfilling, rewarding, and uncomplicated lives.

[1] Singer, Judy. (1998) Odd people in: The birth of community amongst people on the "Autism Spectrum". A personal exploration of a new social movement based on Neurological Diversity. Faculty of Humanities and Social Science, University of Technology, Sydney. 

[2] American Psychiatric Association. (2013) Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

[3] Ibid.

[4] Shapiro, Joseph P. (1993) No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press.

Suggested Resources:

1. Armstrong, Thomas. (2010) Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences. Cambridge: Da Capo Press.

2. Autistic Self Advocacy Network: http://autisticadvocacy.org/

3. Disability Studies Quartetly Special Topic: Autism and the Concept of Neurodiversity (open source): http://dsq-sds.org/issue/view/43.

4. Jaarsma, P & Welin S (2011) Autism as natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1): 20-30.

5. Kapp S, Gillespie-Lynch, K, Sherman, LE, & Hutman, T. (2013) Deficit, difference of both? Autism and neurodiversity. Developmental Psychology, 49(1): 59-71.

6. Nazeer, Kamran. (2006) Send in the Idiots : Growing Up in Another World. Bloomsbury: Trade Paper.

7. Neurodiversity Weblog: http://www.neurodiversity.com/main.html

8. Saverese, Ralph. (2007) Reasonable People: A Memoir of Autism and Adoption. New York: Other Press.

Want to Cite This Post? 



Sarrett, J. (2013). Why is Neurodiversity Useful? The Neuroethics Blog. Retrieved on
, from http://www.theneuroethicsblog.com/2013/12/why-is-neurodiversity-useful.html