Open Society
From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research
Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.
Participants, including researchers, described the field of autism research as being largely out-of-touch with the realities of autistic people’s lives. They spoke of autism research as failing to address the autistic community’s priorities, instead being “more focused on things like genetics, or parent stress, that are quite stigmatising or… not vital to their day-to-day functioning” (06-RSp), or “addressing stuff that just does not matter. It’s just irrelevant. It just does not matter” (04-R). Participants felt that autism research often failed to improve the lives of autistic participants, who were “just… contributing their information, contributing their experiences to studies that… would never help them, in the end” (05-StF).
The findings presented here paint a picture of a field in flux, facing a shift from the “normal science” (Pellicano and den Houting, 2022) of the ivory tower to a more inclusive, real-world paradigm with community members valued as key agents in knowledge production.
stimpunks·frontiersin.org·
Behaviorism Won
I have volunteered to be a guest speaker in classes this term. Yesterday, I talked to the students in Roxana Marachi's educational psychology class at San Jose State.
Papert was one of the founders of constructionism, which builds on Piaget's theories of constructivism — that is, learning occurs through the reconstruction of knowledge rather than a transmission of knowledge. In constructionism, learning is most effective when the learner constructs something meaningful.
I have often argued to students, only in part to be perverse, that one cannot understand the history of education in the United States during the twentieth century unless one realizes that Edward L. Thorndike won and John Dewey lost.
Thorndike won, and Dewey lost. You can't understand the history of education unless you realize this. I don't think you can understand the history of education technology without realizing this either. And I'd go one step further: you cannot understand the history of education technology in the United States during the twentieth century – and on into the twenty-first – unless you realize that Seymour Papert lost and B. F. Skinner won.
But behaviorism did not go away. And I'd argue that didn't go away because of the technologies of behavior that Skinner (and his students) promulgated.
Edward L. Thorndike was an educational psychology professor at Columbia University who developed his theory of learning based on his research on animal behavior – perhaps you've heard of his idea of the "learning curve," the time it took for animals to escape his puzzle box after multiple tries. And John Dewey was a philosopher whose work at the University of Chicago Lab School was deeply connected with that of other social reformers in Chicago – Jane Addams and Hull House, for example. Dewey was committed to educational inquiry as part of democratic practices of community; Thorndike's work, on the other hand, happened largely in the lab but helped to stimulate the growing science and business of surveying and measuring and testing students in the early twentieth century. You can think of the victory that Condliffe Lagemann speaks of, in part, as the triumph of multiple choice testing over project-based inquiry.
Skinner won; Papert lost. Thorndike won; Dewey lost. Behaviorism won.
Folks will point to things like maker-spaces to argue that progressive education is thriving. But I maintain, even in the face of all the learn-to-code brouhaha, that multiple choice tests have triumphed over democratically-oriented inquiry. Indeed, when we hear technologists champion "personalized learning," it's far more likely that what they envision draws on Skinner's ideas, not Dewey's.
B. J. Fogg and his Persuasive Technology Lab at Stanford is often touted by those in Silicon Valley as one of the "innovators" in this "new" practice of building "hooks" and "nudges" into technology. These folks like to point to what's been dubbed colloquially "The Facebook Class" – a class Fogg taught in which students like Kevin Systrom and Mike Krieger, the founders of Instagram, and Nir Eyal, the author of Hooked, "studied and developed the techniques to make our apps and gadgets addictive," as Wired put it in a recent article talking about how some tech executives now suddenly realize that this might be problematic.
(It's worth teasing out a little – but probably not in this talk, since I've rambled on so long already – the difference, if any, between "persuasion" and "operant conditioning" and how they imagine to leave space for freedom and dignity. Rhetorically and practically.)
If we look more broadly – and Skinner surely did – these sorts of technologies of behavior don't simply work to train and condition individuals; many technologies of behavior are part of a broader attempt to reshape society. "For your own good," the engineers try to reassure us. "For the good of the global community," as Zuckerberg would say. "For the sake of the children."
stimpunks·hackeducation.com·Pigeons, Operant Conditioning, and Social Control
This is the transcript of the talk I gave at the Tech4Good event I'm at this weekend in Albuquerque, New Mexico. The complete slide deck is here.
stimpunks·hackeducation.com·
You Can Rely on Drugs Without Being an Addict
It may seem like a trivial or academic distinction, but addiction is not dependence, and dependence is not necessarily a problem.
stimpunks·vice.com·
My Disability Is Dynamic - No End In Sight
This piece was originally published on Medium on December 8, 2019. The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa. And when I talk to people with chronic illness, lots and lots of people tell me that they aren’t sure if they’re … My Disability Is Dynamic Listen / Read Transcript »
The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa.
And when I talk to people with chronic illness, lots and lots of people tell me that they aren’t sure if they’re allowed to call themselves disabled. I’ve interviewed more than 60 people about their experiences with chronic illness and I hear different versions of this same idea over and over again: “I’m not sure if I’m disabled enough. Some days I can exercise and go to work and have a drink with friends without a problem, and some days I physically cannot drag my body out of bed.”
stimpunks·noendinsight.co·
What does #NEISVoid mean? - No End In Sight
It's a hashtag you can use to join asynchronous Twitter conversations about life with chronic illness, diagnosed or otherwise.
stimpunks·noendinsight.co·
Narratives of Scale in the Anthropocene: Imagining Human Responsibility in an Age of Scalar Complexity
The Anthropocene concept draws attention to the various forms of entanglement of social, political, ecological, biological and geological processes at multiple spatial and temporal scales. The ensuing complexity and ambiguity create manifold challenges to widely established theories, methodologies, epistemologies and ontologies. The contributions to this volume engage with conceptual issues of scale in the Anthropocene with a focus on mediated representation and narrative. They are centered arou
stimpunks·routledge.com·
Narratives of Scale in the Anthropocene: Imagining Human Responsibility in an Age of Scalar Complexity 9780367683382, 9781032065397, 9781003136989 - DOKUMEN.PUB
The Anthropocene concept draws attention to the various forms of entanglement of social, political, ecological, biologic...
stimpunks·dokumen.pub·About
Learn about the meaning of “pluralism” and read about Pluralism Project staff, students, and advisors. Discover more about our initiatives, mission, and history.
stimpunks·pluralism.org·
The minority stress perspective
This perspective adds significant insight into the critical application and evaluation of theory regarding the impact of homophobia and correlates of HIV risk among gay and bisexual men and other sexual minorities.
Minority stress is the relationship between minority and dominant values and resultant conflict with the social environment experienced by minority group members
The concept of minority stress stems from several social and psychological theoretical orientations and can be described as a relationship between minority and dominant values and resultant conflict with the social environment experienced by minority group members (Meyer, 1995; Mirowsky & Ross, 1989; Pearlin, 1989). Minority stress theory proposes that sexual minority health disparities can be explained in large part by stressors induced by a hostile, homophobic culture, which often results in a lifetime of harassment, maltreatment, discrimination and victimization (Marshal et al., 2008; Meyer, 2003) and may ultimately impact access to care.
Underlying the concept of minority stress are assumptions that stressors are unique (not experienced by nonstigmatized populations), chronic (related to social and cultural structures) and socially based (social processes, institutions and structures) (Meyer, 2003). While this theory has been applied to other populations, including women, immigrants, the impoverished and racial/ethnic minorities, there is still much room for additional investigation among sexual minority populations, as they do not have as rich a history in sociological investigation (Meyer et al., 2008).
A strong correlation may be drawn between (a) minority stress theory, which underscores stress processes (experience of prejudice, expectations of rejection, internalized homophobia) and ameliorative coping processes (Meyer, 2003); and (b) a greater likelihood for psychological distress and physical health problems
stimpunks·web.archive.org·
Type Integrity: Falsification of Type, Prolonged Adaptation Stress Syndrome, Minority Stress, Masking, and Burnout
Prolonged Adaptation Stress Syndrome is what happens when someone pretends to be something they’re not on an everyday basis. It is exhausting and soul-eating. This greatly contributes to the …
stimpunks·boren.blog·
Opinion | Stop Gaslighting The Left About Evangelicals. They Believe Awful Things About Jews
One cannot achieve a healthy religious pluralism by pretending that robust mutual respect for religious diversity exists where it does not
One cannot achieve a healthy religious pluralism by pretending that robust mutual respect for religious diversity exists where it does not exist. Fostering healthy pluralism, which democracy demands, means confronting intolerance.
stimpunks·forward.com·
Empowerment against Evangelization: Countering Conversion Attempts by Asserting Moral Autonomy
Some Confessions of a Past Proselytizer I remember how stressful it was for me, as a child and young adult, to believe I “had to” attempt to convert others to Christianity–specifi…
Remind yourself that shared values, rather than shared beliefs, are what matter when it comes to interacting with others, and that there is no replacement for doing the hard work of making yourself better. Being a good person is a process, not a status.
stimpunks·cstroop.com·
The Evangelical Pluralism Problem and its Media Enablers
At this critical moment for American democracy our media landscape is doing a poor job in its coverage of conservative white evangelicals. Coverage of this relatively large segment of the population is characterized by, on the one hand, effusive praise for the slightest milquetoast criticism of Dona
pluralism celebrates the deeply held differences of people and institutions in a democratic society,”
I recently called for liberals and non-believers to take the navigation of pluralism seriously, to embrace pluralism as a liberal value, and to engage in discussions of how to fairly and meaningfully achieve equal accommodation in the public square. To do so, to my mind, requires an understanding emphasized by modern social contract theorists like Karl Popper that the toleration of intolerance must have limits, lest the intolerant use the machinery of a tolerant society to take power and end tolerance
stimpunks·religiondispatches.org·
The only way to save democracy from the Christian Right is by fighting for pluralism - The Conversationalist
“The path to social harmony and national unity is paved by compassion for and a genuine valuing of the stranger, those whose beliefs, practices, and so on, are different from those in the social, religious or political majority.”
Pluralism, of course, refers to people of diverse and conflicting beliefs coexisting peaceably, linked by their adherence to a shared social contract which commits members of different groups to treating others fairly and accommodating them equally in the public square
“It is in doing the work that we discover what we have in common,” he said, noting that the work itself leads to an appreciation of our differences.
So what might a liberal pluralism predicated on robust separation of church and state and equal accommodation in the public square look like? And how might we navigate the tensions not just between representatives of different confessions, but also between believers and non-believers?
It is self-evidently necessary for progressive atheists and agnostics to build coalitions with progressive believers and to work together toward the common good.
For Rev. Dr. Cari Jackson, RCRC’s Director of Spiritual Care and Activism, pluralism is associated above all with compassion. “To be compassionate requires decentering or stepping outside one’s own experiences in order to give priority to the experiences of others,” Jackson said. This task is more challenging, she added, for those who “are part of any privileged hegemony” because of “a limitation of experience and exposure.”
Christianity represents one of these hegemonies, said Jackson. “For interfaith dialogues to be healthy and viable, now is a critical time for atheist perspectives to be included,” she said, adding: “The path to social harmony and national unity is paved by compassion for and a genuine valuing of the stranger, those whose beliefs, practices, and so on, are different from those in the social, religious or political majority.”
Jeremy Forest Price, who is involved in interfaith work, agrees with Jackson on the importance of clear-eyed honesty regarding power dynamics and the importance of representation. “An emphasis on pluralism will help open up the discussion around religion (and worldviews, spiritualities, and the absence of religion) so that we can trace the ways that specific religious ideologies influence our shared public spaces,” he said.
While there are a number of specific fundamentalist Christian ideologies whose adherents refer to themselves as Dominionists (for example, Seven Mountains Dominionism), broadly defined, Christian dominionism simply refers to the beliefs and politics of Christians who pursue social domination over members of other groups by enshrining their religious beliefs in coercive law.
stimpunks·conversationalist.org·
A Personal Update and Some Thoughts on Pluralism
Hi, all! I know it has been a very long time since I’ve created any new content for this site. I never intended to go into blogging hiatus for seven months, but in the meantime I’ve bee…
Embracing pluralism is good citizenship.
stimpunks·cstroop.com·
Understanding Bids and Their Impact on Relationships | The Light Program
Learn about John Gottman’s concept of emotional bids for connection, and how they have a real impact on your relationship.
stimpunks·thelightprogram.pyramidhealthcarepa.com·
(PDF) Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population
PDF | Research into autism and mental health has traditionally associated poor mental health and autism as inevitably linked. Other possible... | Find, read and cite all the research you need on ResearchGate
stimpunks·researchgate.net·
How Trauma-Informed Are We, Really? - ASCD
"I have a story for you," Shari said as she jogged toward me. I had spent the day with her high school's administrative team discussing an equity assessment they hoped to conduct. A major challenge at this school, as in many schools, was the leadership team's habit of embracing shiny new program aft
But I'm also a champion of trauma-informed education, something I came by through experience. As an elementary-aged child, I was sexually abused repeatedly by an older boy who lived in my neighborhood. I know something of trauma.I carried that trauma everywhere: soccer practice, the dinner table, school. And I behaved in perfectly reasonable ways for a sexually abused child to behave (Everstine; Everstine, 2015). I was restless. I passionately resisted being in confined spaces with adults.Teachers called this "acting up." They punished me for little behaviors that I now know were proportionate to my trauma (as, really, any behavior is for a sexually abused child). Then, because I received poor behavior assessments, I was punished at home. I can't recall anyone being curious about why I behaved the way I did. There was no root cause behavior analysis, just reactive rule-flinging.So, I'm all in on trauma-informed education—by which I mean I'm all in on what it can be if we commit to applying it mindfully and equitably.
The trouble surfaces when we apply trauma-informed education in ways that risk reproducing trauma or that ignore significant sources of trauma. It is in response to that trouble that I share three transformative commitments for trauma-informed education. My hope is that, by embracing these commitments, we might maximize the transformative potential of trauma-informed education rather than just layering it onto our program pile.
Attend to the practices, policies, and aspects of institutional culture that traumatize children at school
My biggest source of trauma is how I'm treated here. In every school, the first trauma-informed step should be mapping out all the ways students, families, and even we, as educators, experience trauma at school. When we skip this step, we render the entire trauma-informed effort a hypocrisy.
We must infuse trauma-informed education with a robust understanding of, and responsiveness to, the traumas of systemic oppression
Shari associated her trauma with racism and transphobia at school. Her story is a critical lesson on why we should shake free from the deficit-oriented view that traumas are mostly the result of students' home lives. This view obscures the traumatizing impacts of systemic oppression. If we're not responsive to these impacts, we're enacting a privilege-laden version of trauma-informed education.
Dislodge hyper-punitive cultures and ideologies
Bad ideologies are harder to break than bad practices. This might be why, in my experience, the hardest transition for most schools adopting trauma-informed education involves dislodging hyper-punitive educator ideologies and school cultures. Perhaps philosophically we recognize that avoiding reactive rule-flinging and responding to the root causes of student behavior is a trauma-informed practice. But to what extent do we apply this in practice? Hyper-punitive ideologies remain an education epidemic, even in supposedly trauma-informed schools.
Being trauma-informed means consciously cultivating space in our mental models so that, even if we know nothing about a particular set of circumstances, we avoid the temptation to mindlessly apply rules.
But if we're trauma-aware, we realize that the burden can't be on people—on children—experiencing trauma to educate those who created the institutional culture in which the trauma is happening. That expectation is, itself, potentially traumatizing.
stimpunks·ascd.org·
Ashe Clark on TikTok
#duet with @bronteremsik This literally stopped me in my tracks- it is SO GOOD! Well worth a late night share. #exvangelicals #exvangelical #deconstruction #exchristian #religioustrauma #deconstructingfaith #deconversion #exevangelical #exfundie #deconstructed #churchtoo #faithdeconstruction #progressivechristianity #agnostic #spirituality #exfundamentalist #exmormon #exmo
stimpunks·tiktok.com·
Community as Home: Call for Stories
Deadline for submissions: March 6, 2020 #CommunityAsHome is a collaboration by two disabled artists of color, Ashanti Fortson and Alice Wong, featuring 15 digital portraits and stories representing…
stimpunks·disabilityvisibilityproject.com·
Community As Home – Portraits
In 2020 artist Ashanti Fortson and Alice Wong collaborated in a project called Community As Home featuring a series digital portraits centered on the joy, culture, and love of disabled peopl…
stimpunks·disabilityvisibilityproject.com·
Crossing the Border: How Disability Civil Rights Protections Can Include Disabled Asylum-Seekers
Civil rights protections designed to protect disabled people from discrimination, such as the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973, are powerful tools for ensuring that disabled asylum-seekers have access to the protection and services they need in the U.S. immigration system.
Eugenics has influenced leaders across the world, including in the United States, and was—and still is—the basis for many racist, ableist, and xenophobic attitudes and policies.
stimpunks·americanprogress.org·
Understanding the factors that affect university completion for autistic people
Autistic individuals may be less likely to complete their university studies, but there is no research to date that examines why this is the case. Thi…
stimpunks·sciencedirect.com·
Review: ‘Can I Get a Witness?’ Takes James Baldwin’s Message to Church (Published 2016)
In Meshell Ndegeocello’s show at Harlem Stage, “The Fire Next Time” might as well be the Bible. And the big question is, “How are you surviving 2016?”
stimpunks·nytimes.com·
Songs of Protest & Healing: Meshell Ndegeocello on the Gospel of James Baldwin
How the cultural and literary icon continues to deliver lessons of freedom, humanity and humility.
James Baldwin’s prophetic literature The Fire Next Time was at the forefront of my mind. I’d been reading it a lot, carrying it around in my pocket. It became like my religious text. Baldwin speaks about things that are very familiar within the human condition, and the most revolutionary music to me — the music that changed my life — is the songs about the inner struggle, the commonality of being human.
stimpunks·tidal.com·
Benefits and harms of interventions to improve anxiety, depression, and other mental health outcomes for autistic people: A systematic review and network meta-analysis of randomised controlled trials - Audrey Linden, Lawrence Best, Freya Elise, Danielle Roberts, Aoife Branagan, Yong Boon Ernest Tay, Laura Crane, James Cusack, Brian Davidson, Ian Davidson, Caroline Hearst, William Mandy, Dheeraj Rai, Edward Smith, Kurinchi Gurusamy, 2022
Mental health difficulties are prevalent in autistic people with ~14%–50% having experienced depression and ~40%–80% having experienced anxiety disorders. Ident...
stimpunks·journals.sagepub.com·The Evolutionary Roots of Altruism
Do altruistic groups always beat selfish groups? A new book claims they do.
stimpunks·prospect.org·