Stimpunks Guide to the NeurodiVerse Issue #4: From an Ivory Tower Built on Sand to Open, Participatory, Emancipatory, Activist Research

Autism research is out-of-touch with the “real” world

Frontiers | From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

Our “Stimpunks Guide to the NeurodiVerse” series surveys recent neurodiversity and disability related research. In this issue, we highlight how the vast majority of autism research is divorced from the lived realities of autistic people. We discuss how to move from “an ivory tower built on sand” to open + participatory + emancipatory + activist 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).

Frontiers | From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

Autism research is a systemic source of ableism. Researchers habitually dehumanize the people they claim to want to help.

In 2012, I entered the education program at Sonoma State University in order to search through the literature in education and the social sciences, and I hoped to bring together research on the enforcement of normality that would describe and illuminate the everyday dehumanization autistic people face. This dehumanization is not restricted to the exclusion and bullying that is a reliable feature of the social lives of autistic people; it is also a regular feature in clinical settings, in academic research, in seemingly authoritative books about autistic people, in media reports, in education, in social services, in fundraising narratives, and in social skills training for autistic youths and adults. This dehumanization is so widespread that it seems to be an intrinsic aspect of normality – an accepted and acceptable way to view the bodies, minds, and lives of autistic people, or of any people who consistently breach the unwritten rules of normality.

Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

The mainstream of autism studies is stuck in the eugenics and ableism of the 1940s and has aged as well as race science, which is to say, very badly. Many autism studies coming out today are ignorant and vile in their ableism like the race studies of old were in their racism. They are sickening to read. They read like bigotry, because they are bigotry. They steal the credibility of science to rationalize and exploit prior bigotries.

Autism research is incredibly flawed in an enormous number of ways. One example of how, is the fact that the sum total of all knowledge of Autism in academia is based on the work of two incredibly flawed men, both with incredibly flawed ideas and practice from the 1940s. Everything we know professionally and societally about Autism is underpinned by their work. As I’ve said so many times in talks and trainings the whole of Autism research is built on a foundation of sand.

Autistic Masking: Kieran Rose a new Academic Paper

…the whole of Autism research is built on a foundation of sand.

Autistic Masking: Kieran Rose a new Academic Paper

Autism research is an ivory tower built on sand. We desperately need a shift to an inclusive paradigm that promotes epistemic justice.

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.

Frontiers | From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

That inclusive, real-world paradigm is open + participatory + emancipatory + activist research. Below, we excerpt from a number of our favorite studies by way of introduction.

“The best way to get it right is to listen to us.”

‘The best way to get it right is to listen to us’ — autistic people argue for a stronger voice in research

Table of Contents

• From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
• Doing it differently: emancipatory autism studies within a neurodiverse academic space
• Making the future together: Shaping autism research through meaningful participation
• Navigating Open Scholarship for Neurodivergent Researchers
• Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices
• Facts, Fire, and Feels: Research-Storytelling from the Edges

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

The most salient characteristic of activist research is the belief that it must go farther than knowledge production; it must create transformative action.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

It turns out that there is an emerging research framework—activist research—that is inclusive of multiple disciplines including educational research (Cushman, 1999; DeMeulenaere & Cann, 2013; Fine & Vanderslice, 1992; Knight, 2000; Malone, 2006; Nygreen, 2006), anthropology (Hale, 2006; Speed, 2006; Urla, & Helepololei, 2014) social movements and other social science research fields (Chatterton, Fuller, & Routledge, 2007; Choudry, 2014). A review of the theoretical frameworks, methodologies, findings, ethical issues, and challenges has allowed me to identify three characteristics that delineate activist researcher from other types of research: (1) combination of knowledge production and transformative action; (2) systematic multi-level collaboration; and (3) challenges to power.

The most salient characteristic of activist research is the belief that it must go farther than knowledge production; it must create transformative action. Knowledge production is the epitome of all research, even for studies that seek to expose inequities and call out oppressive systems and structures, but activist research goes further by committing to bringing about change with and for the participants (DeMulenaere & Cann, 2013; Hale, 2001, Fine & Vanderslice, 1992; Nygreen, 2006). Who is changed and how they are changed is a key aspect of activist research. DeMulenaere and Cann note that critical research is not necessarily activist research if it fails to include social transformative change, “at the spaces and sites of research…” (p. 557, 2013). They stress that if the only change that takes place is through reading of the published findings, then the study would not be considered activist research.

Hale contends that researchers who engage in cultural critique are committed to the research institution while activist researchers have dual commitments to the people and their political struggle and the academy (2006, p. 100). And it is this dual commitment that transforms the methodology beginning with the research topic and ending with the production of knowledge that is not only useful but transformative (Hale, 2001). Thus, activist research is an emerging research framework that shifts the focus from traditional knowledge production to commitment to working with others to produce transformative change. Traditional research methods such as ethnography, action research, and feminist research are situated within an activist research framework, leaving the means intact, but striving to change the ends.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Activist research in education does not seek to transform the participant but to work with the participants to bring about transformative change in education policy, practices, structures, and institutions.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Like cultural critique, research in education often fails to bring about social change (DeMeulenaere & Cann, 2013) and can reproduce myths of cultural and cognitive deficiency (Nygreen, 2006). Activist research uses transformative action to change educational practices, structures, and institutions. Nygreen notes that, “activist research is politically engaged: it assumes education is inherently political—rooted in and shaped by political process and relations of power—and that education change is a political struggle” (2006, p. 2). When education research is decontextualized from its political roots, the problem is often seen as the individual child, teacher, or urban community, and the goal becomes to fix them with the right intervention. Nygreen makes clear, however, “many of the contextual factors that shape teaching and learning in under-resourced urban schools are rooted in political-economic structures and practices that extend far beyond the impoverished neighborhoods of these schools” (p. 5). Activist research in education does not seek to transform the participant but to work with the participants to bring about transformative change in education policy, practices, structures, and institutions.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

An activist research framework dismisses the idea that education research can or should be neutral but instead assumes that it is inherently political.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Some might question if it is ethical to engage in research that seeks transformation as a result, implying that neutrality in research should remain the goal. An activist research framework dismisses the idea that education research can or should be neutral but instead assumes that it is inherently political. The third aspect of this framework includes challenges to power; thus, neutrality or objectivity is not possible if one engages in activist research. As mentioned earlier, transformative change is not about forcing or demanding that the participants themselves change. Educational research situated within an activist framework acknowledges that political structures create systems of oppression for low-income children and students of color, and seeks to change those through policy and practice. As with any lofty goal, there are limitations in desiring transformative change but that does not mean the pursuit is any less worthy than those that guide traditional research.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Activist research embraces collaboration at every step of the research process.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Activist research embraces collaboration at every step of the research process. Hale (2001) notes beginning with the research question and objectives, activist research is organized collectively with the people who are subject to the conditions under study. He suggests that prior to the selection of a research design, the researcher must undergo “a process of dialogue and collective work with the subjects of study…” (p. 14). The goal is to ascertain what knowledge or problem the people want to gain or work toward solving. Instead of the researcher identifying the goals and the selecting participants who share the same goals, the objectives “coincide at least in part with what actors in the process under study think it is important to know and to understand” (p. 14).

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

In activist research the participants actively engage in data collection, interpretation and analysis.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

In traditional research, the researcher collects and analyzes the data. Even in qualitative participatory research that uses naturalistic forms of data collection, the researcher is often the sole interpreter of the data. Although we may ask our participants to review our analysis as a form of member checking, rarely do we have them collect, interpret, and analyze the data. In activist research the participants actively engage in data collection, interpretation and analysis.

Fine and Vanderslice state that the strategy of turning the participants into researcher created a major turning point for the staff, “by becoming researchers they changed their thinking about students, the community, and one another” (p. 210).

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

The use of systematic multi-level collaboration was instrumental in creating the conditions needed to make restructuring the school a valid possibility.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

The final salient feature of activist research is the nexus between transformative action, systematic, multi-level collaboration, and challenges to power structures. As the researcher works with the participants to design a research project that leads to transformative action the power structure that limits and or oppresses those participants is challenged during the research process or with the research findings. Malone (2006) argues that her identity as an environmental education researcher and an environmental activist creates a “professional commitment and responsibility to support and empower community members to be active in social and environmental change” (p. 378). However, she notes that the traditional notion of empowerment, where the researcher makes the participant aware of their lack of power, is problematic. “Empowerment requires the appropriation of power for participants beyond knowledge of the source of their disempowerment” (p. 378).

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Empowerment requires the appropriation of power for participants beyond knowledge of the source of their disempowerment.

Environmental education researchers as environmental activists

In addition to challenging power, Fine and Vanderslice (1992) highlight how activist research works across multiple levels and sites of power and practice. They stress the importance of constructing theory at the school level (practice) and the district level (power):

Activist research involves the dialectical gathering and sharing of information across sites of power and practice, so that no one side of the institution is even engaged in an image of possibility without the rest of the system at least on deck to listen, and be part of the transformative process. To initiate activist research at the school-level alone could be irresponsible, in so far as we could easily “take” the schools toward images of possibility that the district, union, or state would never tolerate. Similarly, to initiate activist research at the district (state/union) level alone could yield unduly narrow images. Districts, as the seat of policy setting, monitoring and power, do not know, intimately, where they need to change, give up monitoring, and share power until they hear from schools—the site of practice. (Fine & Vanderslice, 1992, p. 205)

As the participant researchers negotiated ideas for school restructuring, they were sent to the district and as the district proposed ideas they were sent back to the school, thus the levels of power and practice worked together as new questions and new ideas surfaced. Challenges to power must be explicit and encompass multiple sites if they are to support the participants desire for transformative action.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Activist research can serve as a foundation for developing critical conscious in youth or an outlet for engaging in critical civic practice, or both.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

In addition to exposing and challenging the political battles waged through education policy and reform efforts, activist research can provide youth with the experience needed to develop their critical consciousness and critical civic practice. Critical civic praxis is defined as “a process that develops critical consciousness and builds the capacity for young people to respond and change oppressive conditions in their environment” (Ginwright & Cammarota. 2007, p. 699). Based on the work of Freire, critical consciousness is achieved when the person realizes how oppression has limits their agency and ability to engage in resistance. Through critical consciousness, “the individual’s subjectivity transforms to foster new possibilities and capacities to see and act differently, proactively in the world—perceptions and actions geared toward promoting justice” (p. 699). Activist research can serve as a foundation for developing critical conscious in youth or an outlet for engaging in critical civic practice, or both.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

To summarize, I have reviewed three salient characteristics of activist research: transformative action, systematic multi-level collaboration, and challenges to power.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Perhaps it is best to think of activist research as a framework for conducting collaborative research that makes explicit challenges to power through transformative action. Activist research can employ many different research methods including ethnography, participatory action research, and community based research. Activist research can involve an academic researcher but does not require one, and the work happens in the community and is initiated by those working for their own liberation. Research that is critical, participatory, and social justice oriented is not automatically classified as activist research if it fails to create transformative action.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Research that produces knowledge and awareness about oppression will not change the lived reality of the oppressed.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

If the goal of research is to change the world, then the framework for conducting research must change. Research that produces knowledge and awareness about oppression will not change the lived reality of the oppressed. Those who traditionally have research done to or for them, will not be changed by research articles that are only accessible in academic journals. Research that maintains the status quo will not be sufficient to improve the future of marginalized youth and adults. If change is the goal, the way we conceptualize research must be restructured to work for change. This does not mean that activist research is a cure to all that ails society and will fix every problem facing today’s youth. Those who engage in activist research face challenges to reliability, validity, and acceptance from the larger research community (Hale, 2006) and although they strive for transformative action there is no guarantee that their work will bring about the outcomes they desire. Nonetheless, activist research provides a framework of possibilities for taking research out of halls of academia and into the hands and hopes of the people.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

activist research provides a framework of possibilities for taking research out of halls of academia and into the hands and hopes of the people.

From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action

Doing it differently: emancipatory autism studies within a neurodiverse academic space

Perhaps the most important message arising from the emancipatory approach is the freedom of expression it offered to its participants.

“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity

A recent editorial in the major international journal Autism called for researchers to ‘acknowledge the need to address the everyday realities of autism’ by engaging with autistic people at all steps of the research process, including – but not limited to – establishing directions for research (Pellicano et al. 2018, 82). This ‘partnering’ of researchers with autistic people, together with a recognition of potentially unequal power dynamics between researchers and research participants, is characterised as participatory research (Waltz 2009; Fletcher-Watson et al. 2018)

However, meaningful inclusion of autistic voices in research tends to be the exception rather than the rule (Chown et al. 2017). This is methodologically and epistemologically problematic (Milton and Bracher 2013). Thus, drawing on an emancipatory as well as a participatory framework for autism research can increase the inclusion of autistic voices and contribute to a revision of the non-autistic voices. For example, Waltz (2009) claims that the accuracy of the findings is likely to improve when increasing the involve- ment of the participants in the process, because their insight will provide important information about their needs, priorities, and challenges, amongst other parameters. Research produced in this way is therefore of ‘higher qual- ity … (and more) relevant and applicable’ (Jivraj et al. 2014, 782). This statement applies to autistic people, researchers, and participants. For example, autistic researchers suggest that well-being for an autistic person would mean adapting the lifestyle to an individual’s own personal needs and desires, rather than being forced to mimic behaviours that can be confusing to them (Milton and Bracher 2013), a finding that may come less easily to a non-autistic researcher. The insight of autistic people is of importance if the research community is to have access into autistic ways of thinking (MacLeod, Lewis, and Robertson 2014), which we, and others, argue produces better research. As a result, an emancipatory framework can provide crucial contributions to the current understanding of autism.

Doing it differently: emancipatory autism studies within a neurodiverse academic space

an emancipatory approach refers to the inclusion of the participants within the research process in such a way that they benefit from it and it expresses their opinions and experiences.

Doing it differently: emancipatory autism studies within a neurodiverse academic space

According to Stone and Priestley (1996) in one of the first descriptions of emancipatory approaches within disability research, an emancipatory approach refers to the inclusion of the participants within the research process in such a way that they benefit from it and it expresses their opinions and experiences. An emancipatory framework aims to challenge power structures within the research process (Stone and Priestley 1996) and aims for the equal representation of all ideas and beliefs. It is important to make space in our work for competing discourses as far as is possible.

In emancipatory research the participants are not passive objects, but actively form the final product (Waltz 2009). Emancipatory research, therefore, in contrast to participatory research, aims not only to record and present the issues of a particular group by involving them in the process, but also to initiate changes that will work for the benefit of the people of the community involved in it (Waltz 2009). Therefore, in order for a research process to be emancipatory, a number of criteria have to be met. The agreement upon this framework from the participants is the first important aspect, and engagement with the process for the whole research team from initial conceptualisation to the final product is considered crucial as a shared goal.

Emancipatory research has its roots in investigating marginalised social groups such as ethnic minorities and has been extensively used in feminist research (Stone and Priestly 1996). It also entered the field of disability and mental health research when people with disabilities started to request their rights in the decision-making processes that were related to them (Danieli and Woodhams 2005). Its presence in the field of autism research is, however, relatively new and sporadic (Milton and Bracher 2013; Woods et al. 2018). The nature of the social and communication difficulties of autistic people make researchers sceptical in terms of the ways they might be able to include autistic people in the current research process (Waltz 2009).

Doing it differently: emancipatory autism studies within a neurodiverse academic space

Meanings of space are central in an emancipatory research practice.

Doing it differently: emancipatory autism studies within a neurodiverse academic space

The innovative emancipatory design proved effective in giving voice to a group who have had little presence within the academic and medical large and internationally based participant sample. This article highlights both the importance of approaching autism from an intersectional perspective that takes greater account of context, and the unique contributions that autistic individuals can make to current understandings within autism research.

This project endeavored to follow the main principles of emancipatory research, an approach akin to participatory research, whereby participants are active stakeholders within all aspects of the research process.19 Throughout this study, participants were encouraged to be coresearchers, directing the research agenda, setting their own questions and commenting upon the analysis and findings. In this way, it was hoped that they would derive personal benefit from the research. We aimed not only to record and represent their experiences, but also through dissemination to initiate broader change for the benefit of the whole community.20 Emancipatory research has only recently and very sporadically been used in the field of autism research. The social and communication difficulties associated with autistic individuals have caused researchers to be cautious, perhaps overly so, about consulting them, despite evidence from autistic and nonautistic researchers that this can be done effectively.23,24 This relative absence of representation of autistic individuals deprives the research community of the insights of autistic people, and as Ne’eman has observed, have put autism behind other areas of disability self-advocacy.

“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity

We believe that participatory research should always be the baseline of any autism research project, whoever it is led by. We agree that it is important to value the voice of the ‘other’ as a primary source of knowledge production rather than a secondary source within the context of power structures around epistemology.

Doing it differently: emancipatory autism studies within a neurodiverse academic space

There are important benefits for research communities and participants alike in adopting an emancipatory research approach. Waltz has claimed that the accuracy of results is likely to improve by directly involving participants, because their insights can provide important information about their needs, priorities, and challenges, which may be overlooked by non-disabled researchers. Likewise, autistic researcher Milton has reflected on the production of knowledge in autism studies and the fact that it is largely based on interpretations from non-autistic researchers, neglecting the autistic perspective. Yet the insights of autistic participants are of the utmost importance, if research communities are to have access to their unique ways of thinking and reflect their priorities. An emancipatory approach was also deemed appropriate since this research was inspired by the personal experiences of the first author, who is autistic. The first author met most of the participants online, through her journey to awareness of her own challenges.

However, in keeping with its emancipatory philosophy, the negotiation of consent was treated as an ongoing consensual process rather than one event. Through the dialogues both during and after the data collection and analysis, participants had multiple opportunities to raise questions or concerns.

“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity

For research to be considered emancipatory, it is not sufficient that the research process and production are emancipatory, but dissemination of the research findings should also fulfil this function. Considering the dissemination of research findings, and that the findings themselves are produced in an ‘accessible’ format, should be a concern of any researcher who is doing emancipatory research.

Doing it differently: emancipatory autism studies within a neurodiverse academic space

More autistic-led, participatory, and emancipatory research is needed to increase our understanding of how best to break down the barriers that constrain opportunities for autistic individuals and to understand autism not as a biological deficit, but as a form of ‘‘neurological queerness.’’

The data for this study were collected by the first author, endeavoring to comply with the principles of emancipatory research throughout. The initial conception of the project was influenced by the community from which the participants were recruited, and the first author was a part of the autism community before the beginning of the process. This was an important factor behind their motivation to participate and share sensitive areas of their lives, as many of them confirmed at various times.

Perhaps the most important message arising from the emancipatory approach is the freedom of expression it offered to its participants. Through this, notwithstanding the mentioned points, participants not only reflected upon these aspects of their identities, but also highlighted the need to go beyond them and see the ‘‘dancer’’ and the ‘‘artist.’’ Just as autism research risks neglecting the experiences of autistic women, research such as this study, with its focus on ‘‘identities of disadvantage,’’ potentially risks neglecting the individual experience. Our participants ensured that this did not happen, and instead offered empowering accounts of the development and expression of their different identities, negative and positive.

“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity

…it is important that we avoid essentialising autistic communities, voices, and views. It is important to recognise that people have different perspectives and approaches, which may all be equally valued and important. This suggests the importance of intersectional approaches for emancipatory autism research

Doing it differently: emancipatory autism studies within a neurodiverse academic space

An arts-based approach can further the emancipatory model through Practice as research.

Doing it differently: emancipatory autism studies within a neurodiverse academic space

Making the future together: Shaping autism research through meaningful participation

We know that there is a gulf between the autism research that gets done and the research that people in the autism community want.

Shaping Autism Research in the UK

So, how do we go about building the community of practice we need to deliver these participatory methods? Some basics are already well known – for example, the importance of using respectful language to talk about autism and the need to create an enabling environment in which autistic people can contribute. Our series went beyond these basics, and identified five topics which are essential parts of developing a more participatory and collaborative research model in which autistic academics and autistic people in the community lead and / or partner in research projects.

Shaping Autism Research in the UK

• Respect – how to respectfully represent lived experience in research
• Authenticity – how autism communities can shape a research agenda
• Assumptions – best practice in autistic leadership and community advocacy
• Infrastructure – how to support and encourage autistic academics and activists
• Empathy – how to build effective working partnerships

Making the future together: Shaping autism research through meaningful participation – Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, Elizabeth Pellicano, 2019

Participatory research methods connect researchers with relevant communities to achieve shared goals.

Participatory research enables meaningful input from autistic people in autism research. It is one important way to overcome barriers to effective translation and to ensure that research yields rel- evant benefits (Long et al., 2017).

By participatory research, we mean incorporating the views of autistic people and their allies about what research gets done, how it is done and how it is implemented (Cornwall and Jewkes, 1995). A key principle of participatory research is the recognition, and undermining, of the traditional power imbalance between researcher and participant (Nelson and Wright, 1995).

Another key feature of participatory research is inclusiveness including adapting the research environment, methodology and dissemination routes to permit the widest and most accessible engagement, or engagement from specific groups (e.g. non-speaking autistic people and people with additional intellectual disabili- ties – see Long and Clarkson, 2017). Participatory research is ethically informed by the values of the community, for example, in the selection of research questions and study objectives. Moreover, input from this community can improve the quality of research methods, contextualise findings within real-world settings and thereby enhance the translation of findings into practice (Carrington et al., 2016; Grinker et al., 2012; Parr, 2016; Parsons and Cobb, 2013). However, there is evidence that this engagement is not yet prevalent in the field.

Making the future together: Shaping autism research through meaningful participation – Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, Elizabeth Pellicano, 2019

The participatory approach is a crucial element in all future autism research. A body of literature exists on its principles, practices, and significance.26–33 Anything that will truly help needs to be co-designed, developed, and evaluated with the involvement of autistic people. It has positive implications for the wider research agenda, in particular when established non-autistic autism researchers collaborate meaningfully with autistic scholars. We need approaches that value and center autistic voices, experiences, and expertise.

As participants, autistic people can correct misperceptions regarding concepts developed by autistic communities, researchers, and scholars, including neurodiversity and the neurodiversity paradigm,34–36 the double empathy problem,37 autistic inertia,38 monotropism,39 hyperfocus,40 and autistic space.41 We can offer insights on the therapeutic and empowerment value of self-help activities and the positive aspects of engaging in intense interests, as well as introducing emerging ideas such as sensory trauma,42 the co-creation of extended autistic families, and community-based mentor- ing.43 These concepts have implications for clinical research, including early intervention,44 and can lead research to new, more effective directions.

Autistic Perspectives on the Future of Clinical Autism Research | Autism in Adulthood

Navigating Open Scholarship for Neurodivergent Researchers

The power structure that dominates psychology and social sciences is from white, male and able-bodied people who treat neurodivergent people as an object of the conversation, not the subject. As argued by Jackson (1998, p.8), “Each person is at once a subject for himself or herself – a _who _- and an object for others – a what. And though individuals speak, act, and work toward belonging to a world of others, they simultaneously strive to experience themselves as world makers”. Once we consider that scientists are human, and neurodivergent people can be included in this research, then we can co-create projects that allow us to discover the truth about diversity from different perspectives. This is more commonly discussed in qualitative research but rarely even considered in quantitative research. In addition, with different perspectives, there is an emphasis on moving away from the typical White, Educated, Industrial, Rich, Democratic (WEIRD) samples that account for 80% of study samples but only 12% of the world population, despite the fact that this movement does not acknowledge the neurodiversity movement or neurominorities (e.g. autistic, ADHD, dyslexic). In addition, there is a lack of patient involvement in how to make the research more likely to improve the quality of life of neurodivergent people. The need to address this issue and to ensure disabled and marginalised individuals are directly included in research and policy-making decisions that affect them can be expressed by the commonly used slogan “Nothing about us without us”. Emancipatory and/or participatory approaches such as participatory action research (e.g. Bertilsdotter-Rosqvist et al., 2019; Fletcher-Watson et al., 2018; Grant & Kara, 2021; Leadbitter et al., 2021; Strang et al., 2019; Strang et al., 2021) have considerable potential for facilitating this type of collective knowledge creation and driving social change that benefits neurodivergent people in areas that may contrast with many mainstream research approaches.

A recent movement has become important in education: open scholarship. This reflects the idea that knowledge of all kinds should be openly shared, transparent, rigorous, reproducible, replicable, accumulative, and inclusive (allowing for all knowledge systems). Open scholarship includes all activities that are not solely limited to research such as teaching and pedagogy. One key foundation of open scholarship is accessibility, a key facet that also belongs to the neurodiverse movement (e.g. Brown & Leigh, 2018; Brown et al., 2018). Accessibility and inclusion is where your content, activities and all their components are accessible to all people with disabilities, learning differences, mental health conditions or other health conditions that may affect their learning or engagement with the materials and activities, research activities, clinical training, and teaching (Victor et al., 2021a). It highlights the importance of embracing diversity and making everyone feel welcome and valued (see information sheet). Discussions have been, however, scarce regarding not only how open scholarship can advance the neurodiverse movement, but also how it can benefit from it. It is thus a priority to build community to discuss how the neurodiversity movement can be included in open scholarship, as the lived experience of neurodivergent individuals (including encountered barriers) may help to enhance accessibility, allowing open scholarship to be truly open (Whitaker & Guest, 2020). This in turn may help to dismantle the harmful stereotypes about disabled individuals (Devendorf et al., 2021), providing more specific provisions for neurodivergent and/or disabled researchers (e.g. virtual conferences; see Levitis et al., 2021). Furthermore, including this population in academia will help promote work-life balance, by denormalising overwork and practices that lead to burnout.

There has been a recent shift towards the use of Universal Design for Learning (UDL) (i.e., an approach to teaching highlighting that academics/tutors should be proactively, not reactively, inclusive by making adjustments to their teaching without students having to disclose their disability to student disability services) in higher education (Burgstahler & Cory, 2010). UDL has several benefits: by offering a more flexible and inclusive practice, there is no need to disclose one’s disability, irrespective of student status (Clouder et al., 2020). In addition, making the assumption about the student’s intention based on your interpretation of their behaviour can be damaging for neurodivergent students’ self-esteem. University staff should recognise the different manners in which students may communicate and contribute, whilst being open to collaborating with students to find suitable approaches. Put simply, it can be described as neurodiversity involvement for pedagogy.

Navigating Open scholarship for neurodivergent researchers | FORRT – Framework for Open and Reproducible Research Training

youtu.be/L-B8YasT-UE

Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices

Concerns have also been raised about the quality and rigour of autism research. For example, researchers have highlighted key omissions in the reporting of research, such as failures to declare conflicts of interest (Bottema-Beutel & Crowley, 2021) or the presence of adverse events (Bottema-Beutel et al., 2021). Concerns have also extended to the low standards underlying evidence-based practice (Bottema-Beutel, 2023) as well as replication failures (Gernsbacher & Yergeau, 2019). As Dawson and Fletcher-Watson (2021, p.1) note, the standards of research quality and ethics have not been applied to autism research to the extent that they should, which has “profoundly impacted how autistics are regarded and treated”.

Two potential solutions have been proposed in relation to these aforementioned issues. The first solution regards greater involvement of the autistic and broader autism communities in research: in identifying research priorities, in deciding the design and conduct of research, in analysing and interpreting research findings, and in disseminating research more broadly (e.g., Pellicano et al., 2014). In essence, this solution involves shifting the traditional power balance in research from autism researchers to the autistic and broader autism communities. Participatory approaches such as these are thought to lead to better quality research that is more easily translated into practice (Balazs & Morello-Frosch, 2013; Forsythe et al., 2019).

The second solution regards greater openness and transparency in the reporting of research (Hobson, Poole, Pearson & Fletcher-Watson, 2022). Open research is an umbrella term for several practices, underpinned by a desire for the products and processes of research to be accessible to those outside of the original research team (Munafo et al., 2017). Open scientific practices are closely aligned with efforts to improve research reproducibility, and reduce the risk of grey research practices, such as hypothesising after results are known (HARKing; Kerr, 1998), and over-analysing data (“p-hacking”; Simmons et al., 2011).

In this paper, we discuss how combining participatory and open research practices may go some way toward addressing key issues inherent within autism research. First, we define both open research and participatory research. Then, we outline three key principles for autism researchers striving to make their work more open and participatory: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. Throughout this paper, we draw on examples from literature both within and outside the autism research field, and we conclude with reflections on how this may foster an autism research culture that better serves the autistic and broader autism communities.

PsyArXiv Preprints | Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices

Facts, Fire, and Feels: Research-Storytelling from the Edges

For more, visit our four part series on autism research: “🗂 Facts, Fire, and Feels: Research-Storytelling from the Edges“.

• 🗂 Facts, Fire, and Feels: Research-Storytelling from the Edges
• Questions for an Industry: Are You Disregarding Harm and Profiting From Our Misery?
• Participatory, Emancipatory, Activist Research
• Useful Autism Research: Welcome to This Very Important Update

#ableism #activistResearch #autism #autismResearch #education #emancipatoryResearch #eugenics #guide #openResearch #participatoryResearch #research

Fundamental Attribution Error and Harm Reduction Theater

‘The irony of turning schools into therapeutic institutions when they generate so much stress and anxiety seems lost on policy-makers who express concern about children’s mental health’

ClassDojo app takes mindfulness to scale in public education | code acts in education

Mindfulness matters, but make no mistake: Corporations are co-opting the idea to disguise the ways they kill us

Yet, individualized mindfulness programs pay virtually no attention to how stress is shaped by a complex set of interacting power relations, networks of interests, and explanatory narratives. Carl Cederstrom and Andre Spicer argue in “The Wellness Syndrome” that the mindfulness movement exemplifies an ideological shift, which turns an obsessive focus on wellness and happiness into a moral imperative. This “biomorality” urges the individual to find responsibility via the “right” life choices-whether through exercise, food, or meditation-to optimize the self.

Corporate mindfulness is bullsh*t: Zen or no Zen, you’re working harder and being paid less | Salon.com

Consider “fundamental attribution error” when evaluating mindset marketing like mindfulness, grit, growth mindset, etc.

twitter.com/alfiekohn/status/1…

twitter.com/alfiekohn/status/1…

The notion that each of us isn’t entirely the master of his own fate can be awfully hard to accept. It’s quite common to attribute to an individual’s personality or character what is actually a function of the social environment—so common, in fact, that psychologists have dubbed this the Fundamental Attribution Error. It’s a bias that may be particularly prevalent in our society, where individualism is both a descriptive reality and a cherished ideal. We Americans stubbornly resist the possibility that what we do is profoundly shaped by policies, norms, systems, and other structural realities. We prefer to believe that people who commit crimes are morally deficient, that the have-nots in our midst are lazy (or at least insufficiently resourceful), that overweight people simply lack the willpower to stop eating, and so on.81 If only all those folks would just exercise a little personal responsibility, a bit more self-control!

The Fundamental Attribution Error is painfully pervasive when the conversation turns to academic failure. Driving Duckworth and Seligman’s study of student performance was their belief that underachievement isn’t explained by structural factors—social, economic, or even educational. Rather, they insisted, it should be attributed to the students themselves, and specifically to their “failure to exercise self-discipline.” The entire conceptual edifice of grit is constructed on that individualistic premise, one that remains popular for ideological reasons even though it’s been repeatedly debunked by research.

When students are tripped up by challenges, they may respond by tuning out, acting out, or dropping out. Often, however, they do so not because of a defect in their makeup (lack of stick-to-itiveness) but because of structural factors.

Kohn, Alfie. The Myth of the Spoiled Child (p. 170). Hachette Books. Kindle Edition.

Lee Ross defined FAE as a tendency for people, when attributing the causes of behavior, “to underestimate the impact of situational factors and to overestimate the role of dispositional factors in controlling behaviour”. That’s very aligned with neurodiversity and the social model of disability. It’s at the heart of what I go on about with equity literacy, structural ideology vs. deficit ideology, designing for the edges, and changing our framing.

American culture and education are vast engines of FAE. Special Education is a gauntlet of FAE attitudes. Our family gets tired of wading through bad framing.

Compulsory, top-down mindfulness (and mindset marketing more generally) is too often used to situate structural problems within individuals while “disguising the ways they kill us.” It contributes to the gauntlet.

This is harm reduction theater. Practicing pluralism, for me, for now, means triage and harm reduction. Harm reduction theater wastes resources and bikesheds deficit ideology instead of embracing equity and structural ideology.

twitter.com/HowWeTeach/status/…

Recognize and prioritize minority stress.

As we come to understand depression in the transgender community more accurately, it’s become clear that the major cause is what’s referred to as “minority stress;” that is, “stressors induced by a hostile, homophobic culture, which often results in a lifetime of harassment, maltreatment, discrimination and victimization.”

When Worlds Collide – Mental Illness Within the Trans Community – Lionheart

Why are there greater mental health stresses on autistic people from gender-minority groups? To quote from the research paper,

“The increased rates of mental health problems in these minority populations are often a consequence of the stigma and marginalisation attached to living outside mainstream sociocultural norms (Meyer 2003). This stigma can lead to what Meyer (2003) refers to as ‘minority stress’. This stress could come from external adverse events, which among other forms of victimization could include verbal abuse, acts of violence, sexual assault by a known or unknown person, reduced opportunities for employment and medical care, and harassment from persons in positions of authority (Sandfort et al. 2007).”

Ann’s Autism Blog: Autism, Transgender and Avoiding Tragedy

We’re awash in behaviorism and mindset marketing that directs thinking away from systems and toward individuals, individuals who are structurally stressed.

Design is tested at the edges, and you need structural ideology to do something about it.

Corporate and ed-tech mindfulness aren’t structural or equity literate. When you aren’t equity literate, you risk engaging in harm reduction theater. When you aren’t equity literate, you fail at triage and harm reduction.

Investment in universal mindfulness training in the schools is unlikely to yield measurable, socially significant results, but will serve to divert resources from schoolchildren more urgently in need of effective intervention and support.

Mindfulness Nation is another example of delivery of low intensity services to mostly low risk persons to the detriment of those in greatest and most urgent need.

Those many fewer students in need more timely, intensive, and tailored services are left underserved. Their presence is ignored or, worse, invoked to justify the delivery of services to the larger group, with the needy students not benefiting.

Unintended effects of mindfulness for children | Mind the Brain

“Instead of treating stress situations as fringe concerns, it’s time we move them to the center of our conversations-to start with our most vulnerable, distracted, and stressed-out users, and then work our way outward. The reasoning is simple: when we make things for people at their worst, they’ll work that much better when people are at their best.“

There is no path to inclusive design that does not involve direct confrontation with injustice. “If a direct confrontation of injustice is missing from our strategies or initiatives or movements, that means we are recreating the conditions we’re pretending to want to destroy.” Structural ideology-an ideology shared by intersectionality, the social mode of disability, and design for real life-is necessary to good design.

Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life – Ryan Boren

Education workers, healthcare workers, coworkers, everyone: We need you to check your FAE. We need you to confront injustice. Are you practicing harm reduction theater? Are you contributing to the gauntlet while telling us it’s good for us?

stimpunks.org/glossary/fundame…

stimpunks.org/glossary/harm-re…

stimpunks.org/edges/

stimpunks.org/glossary/minorit…

#equity #fundamentalAttributionError #harmReduction #mindfulness #mindsetMarketing #pluralism #structuralIdeology

@Friendica Support

Hi there,
testing around with the software #castopod, developed by @Castopod :podcasting2: .

In general terms federation with #friendica works, even integration into public forum pages and reshare by those when the castopod profile is followed by the forum page in the first place, as tested with the forum page @podCasts. As of now following from castopod profiles apparently isn't implemented. Also as of now we didn't manage to get the cron job to work at that new instalation on a shared hosting.

What is strange is that a podcast episode publication doesn't embeed the audio player so it can't be reproduced inside the post shown over here on friendica. On mastodon this works, the post displayes a video like screen and reproduces the audio file.

Not sure if this is a specific issue of this friendica instance as it is stil 2023.05 or if this is something the latest versions experience to.

The uploaded audio file was in the format m4a.

This is the link to the original post:
cast.tupambae.com/@bitPickup/p…

Link to a mastodon instance where the post can be seen:
troet.cafe/@bitpickup/11387501…

Link to this site here where the audio is not displayed but only a link:
tupambae.org/display/db58d9ad-…

mʕ•ﻌ•ʔm bitPickup

2025-01-23 01:13:26

The language is set to English, apparently by default.

Die Sascha Lobo Methode

(Warnung. Es kommt ein Rant.)

Sascha Lobo – die älteren werden sich erinnern – war Anfang der 2000er in der deutschen Internet Bubble der größte Hecht im Karpfenteich. Er war der Internet Erklärer, den die Fernsehsender auf der Schnellwahltaste hatten, wenn man “dieses Internet” erklären musste. Und die “Community” war happy: Endlich war man irgendwie auch vertreten.

Lobo predigte auf den “Blogger”-Konferenzen (ohne nen Blog zu betreiben), gründete mehrere Digital-Unternehmen (am besten in Erinnerung bleibt sicher die Blog-Werbungs-Firma Adical, mit der Lobo “alle reich” machen wollte) und landete dann doch wieder in seiner Rolle als Internet-Orakel mit einer Kolumne beim Spiegel im Bereich Netzwelt.

So weit, so gut. Und ich finde es wirklich wichtig, dass größere Medien die gesellschaftliche relevanten Aspekte technischer Entwicklungen (heute ja eher Erzählungen, Entwicklungen sind es ja oft nicht mal mehr) einordnet, vielleicht sogar in großere Zusammenhänge stellt, PR Meldungen der Tech Branche entzaubert und damit eine digitale Öffentlichkeit mündiger, entscheidungsfähiger macht.

Sascha Lobo machte das auf seine Art über einige Jahre. Aber seit einigen Jahren stellt sich bei vielen die Frage ein, warum er das eigentlich noch macht. Bzw. was er da macht.

Nehmen wir die aktuelle Kolumne (ich bin da auch nur drauf gestoßen, weil jemand sie genonmentioned hatte und war erschüttert, wo ich da gelandet war): “Redet lieber über »Stargate« als über Musks rechten Arm” ist ein Text überschrieben, der jede Person, die in der Baumschule nicht in allen Stunden Geschichtsunterricht gefehlt hat, zum irritierten “Wait what?” bringt.

In einem geradezu absurden Einstieg setzt Lobo diverse Aussagen Donald Trumps zum Kauf von Grönland, den offensichtlichen Betrug mit Kryptowährungen, den der Trump Clan seit einigen Tagen betreibt und DIE TATSACHE, DASS ELON MUSK BEI DEN FEIERN ZUR VEREIDIGUNG TRUMPS MEHRFACH DEN HITLER GRUSS GEZEIGT HAT gleich und beschreibt sie und die Diskussion darüber als “Symbole”. Symbole, die zu “Demokratie und Öffentlichkeit” “als Elemente der Debatte” dazugehören würden.

Oooookay. Ich wusste nicht, dass wir hier schon so weit sind, dass das zeigen volksverhetzender Gesten einfach so Teil der Debatte ist, ist mir dann doch ein wenig zu viel vorauseilende Unterwerfung unter die AfD Linie. Und was für ein Symbol ist “Präsident betrügt zur eigenen Bereicherung seine Wähler*innen im großen Stil mit Crypto” eigentlich? Alles Symbole, nichts bedeutet etwas (wenn man nur wohlhabend, weiß, gut vernetzt und hetero ist).

Der Artikel dreht dann in einer crazy Wendung weg von der Marginalisierung des aufziehenden Faschismus zu Lobos Lieblingsthema: KI. Sam Altman kündigte gerade das Projekt “Stargate” an (ja, Techbro kann nur aus SciFi Stories, die nicht verstanden wurden zitieren, es ist ein Klischee, aber es ist wirklich nur ChatGPT unkreativer als Sam Altman) in dem in den nächsten angeblich 500 Mrd. USD in KI Rechenzentren gesteckt werden sollen.

Geneigte Leser*innen wissen nun natürlich, dass Vorhersagen von Sam Altman meistens mit der Realität nicht viel zu tun haben und so hat das Konsortium, dass nun unseren Planeten mit noch mehr KI schneller ruinieren will, natürlich nicht ansatzweise 500 MRD USD zur Verfügung. Man behauptet das einfach, weil es groß klingt. Weil es den Hype am Leben hält und das Narrativ, KI sei alternativlos und die einzige Zukunftshoffnung.

Unzuverlässiger als Sam Altman ist nur Elon “verdächtig besorgt über die Geburtenraten weißer Frauen” Musk, dessen Versprechungen und Vorhersagen nicht nur – wie er selbst zugibt – “optimistisch” sind, sondern schlicht gelogen. Ob es um selbstfahrende Autos geht oder Marsbasen oder humanoide Roboter: Musk behauptet immer, das Thema, was er gerade pushen muss, um den Aktienkurs einer seiner Firmen zu juicen, sei in 3-5 Jahren da. Egal was. Marsbasis. Starke Künstliche Intelligenz. Moral im Silicon Valley (ein Scherz, sowas würde nicht mal Musk behaupten, gibts ja kein SciFi Buch dazu). Und natürlich nimmt der “Ja gut Elon Musk hat den Hitlergruß gezeigt aber das gehört halt auch zum Diskurs, nech?” Text auch auf Elon Musks neuere Lügen Bezug: 2040 soll es eine Fantastilliarde humanoide Roboter geben, die Tesla bauen wird. Ja. genau die Roboter, die Musk neulich demonstrierte und bei denen dann rauskam, dass sie komplett ferngesteuert waren und nichts konnten. Kannste als Prognose in deinen Text schreiben, aber das hätte dir jeder Lektor eigentlich um die Ohren gehauen (zu Recht!).

Jemand mit etwas Überblick und einem Gefühl für Verantwortung seiner Leser*innenschaft gegenüber würde – bei aller möglichen Begeisterung – solche Fakten einordnen. Stimmt das was gerade geschrieben/behauptet wird? Wer behauptet das und warum?

Nun sind die Menschen, die Lobo schon länger lesen, zunehmend irritiert. Warum schreibt er Dinge so? War er nicht auch mal so politisch und alles? War er nicht “einer der Guten”?

Die Maschine

Sascha Lobo hat sich über die Jahre eine sehr effektive FOMO Maschine gebaut, die sich dann über Vorträge und Werbedeals monetarisieren läßt.

Es geht bei der Kolumne nicht um Einordnung oder die Leserschaft im Allgemeinen, die ist als Zahl wichtig, als Relevanzgenerator: Menschen müssen, wie sie das über Jahre gelernt haben, brav auf die Lobo Kolumne clicken, damit der Spiegel die weiter im Programm behält, aber diese Menschen sind nicht die Zielgruppe.

Der Text der Kolumne ist dazu da, FOMO (Fear of Missing Out) bei den Boomern zu erzeugen, die Lobo noch als “den Interneterklärer mit der Crazy Frisur” kennen: Der Herr Lobo kennt sich aus und sagt, ohne KI können wir unsere Firma hier in den Sack hauen, den müssen wir uns mal einladen für einen Vortrag, damit er uns auf die Spur bringt. KA-fucking-TSCHING.

Die Spiegel Kolumne hat nur zum Ziel, eine Stimmung des diffusen technischen Handlungsdrucks zu erzeugen, einie Emotion, die DAX Konzerne dann durch einen Lobo Vortrag versuchen zu verarbeiten (Mittelalte Middle-Managers would literally hire Sascha Lobo instead of going to therapy).

Lobo schreibt nicht für die Menschen, die im Internet auch einen Teil ihres Lebens gefunden haben, mit ihren Blogs oder Social Media Accounts oder Foren oder so. Er schreibt für die Marke Sascha Lobo. Ihr Normalos, die sich sorgen darüber machen, was es mit der digitalen Öffentlicheit macht, wenn fast alle relevanten Plattformen von faschistischen Nerds besessen werden, seid egal. Ihr habt keine 5stelligen Beträge für Vorträge im Budget.

Nun ist das ja erst mal auch nicht unredlich: Man macht Dinge, um Werbung für sich zu machen und damit Einkommen zu erzielen. Machen viele. Ich werde auch nicht zu Vorträgen eingeladen, weil ich so besonders nett oder attraktiv oder klug bin, sondern, weil man mich mal wo gesehen oder was gelesen hat.

Tragisch aber ist, dass er einen so wichtigen Slot im öffentlichen Digitaldiskurs (man mag ja den Spiegel wegen vieler Dinge kritisieren, aber es ist nun mal eine der größten, wenn nicht die größte, private seriöse Nachrichtenseite in Deutschland) besetzt um … nichts beizutragen. Großzügig geschätzt.

Und so ist der Stand der Debatte in Deutschland da, wo er auch schon vor 10 Jahren war. Man rennt hilflos den Hypes hinterher (im Zweifel macht der Bund ja immer noch ein paar Projekte mit den gescheiterten Startups), das Netz bleibt weiterhin vor allem ein Raum, in dem jemand Geld verdienen muss (am besten deutsche Startups oder Telekom/SAP!) und eine ganzheitliche Perspektive und Vision jenseits des “wir verteidigen das, was und vor 10 Jahren mal so hingestellt wurde” bleibt aus.

Das liegt natürlich nicht nur daran, dass Herr Lobo im Spiegel halbgare Kolumnen über ein Internet, an dem er eigentlich gar nicht teilnimmt bzw. das für ihn eigentlich nur eine wirtschaftliche Maschine ist, schreibt: Das Versagen hat viele Väter und Mütter. Aber nicht alle dieser Väter und Mütter haben einen so großen Hebel wie Herr Lobo.

Vielleicht hat er halt auch gar keine Lust mehr sich damit zu beschäftigen, er macht das ja auch schon lange und reich wird man mit kritischer Einordnung und Perspektiven jenseits der wirtschaftlichen Verwertung auch nicht (believe me, I know). Soll halt seine Vorträge bei VW-Martin und Telekom-Christian halten. Aber vielleicht täte dem Spiegel ein wenig neues Blut an der Stelle ganz gut. Denn langsam wirds auch für die Publikation peinlich (ist es eigentlich die Spiegel-Blattlinie, dass das Zeigen des Hitlergrußes bei einer öffentlichen Veranstaltung einfach ein Symbol einer gesunden demokratischen Debatte ist?).

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#rant

let’s talk about trump’s first declaration of war

The first anti-LGBT executive order is out. On the surface, it seems entirely anti-Trans, with strikes at non-binary people, but it’s also striking equally at intersex people, and provides the first nose under the tent of attacks on lesbian and gay people in general, and tacks another legal plank to “personhood at conception” as well.

It’s got plenty of hate for everyone!

As we get started, I want to throw a nod to Erin Reid’s rundown on Bluesky. She was the first person I’ve seen talking about this accurately at all. Some of my read is similar to hers, but I think she missed some important parts of the EO, particularly the point of the first section. It’s all even broader than people are recognising, and we need to fix that.

So let’s start at the top, shall we?

The first two paragraphs of this EO describe trans and nonbinary people as intrinsically false, a fake and a fraud, intended and intending to harm women. Similarly to the anti-gay initiatives of the 1980s and 1990s, it declares trans people to be dangerous, immoral, and wrong by feat of existence.

By implication, it also does the same for intersex people, as intersex people are first de facto and then de jure grouped in with trans and nonbinary people in this order.

The third paragraph builds on the first two to assert that the existence of trans, nonbinary, and intersex people is intrinsically criminal and harmful, and a threat to the rights of ‘real’ women. This section conclusion is critical, because the combined framing put into place by these three paragraphs together is not just propaganda, but a presentation of trans/nonbinary/intersex people as a threat to the “dignity, safety, and well-being” of others – specifically women, and the “American system” as a whole.

It is, more specifically, an assertion that TNI people are an intrinsic harm as a class. As such they form a criminal class, a status which historically exempts people from civil rights protections and authorises pre-emptive legal prejudice against them. In the same way that professional thieves cannot claim for civil rights protections as thieves because they are a criminal class, they are declaring that trans/nonbinary/intersex people are a criminal class too, one to be bound but not protected by law.

They did the same with gays and lesbians in decades past. Just a reminder.

Now. In that context:

Section two provides a series of definitions using terminology we’ve seen in fundamentalist and TERF circles, decrying the very idea of “gender” as a dangerous “ideology,” while defining “female” and “male” as “a person belonging, at conception, to the sex that produces the large reproductive cell” and “a person belonging, at conception, the sex that produces the small reproductive cell.” (emphasis added)

This is a nudge towards personhood-at-conception, by the way. Expect more of this as they push for a national comprehensive abortion and contraception ban.

But aside from that – this is a really weird way of saying “XX WOMAN XY MAN” without saying it. I think they’re either trying real hard not to say that, though I don’t know why. Either these definitions will catch couple percent of “assigned female at birth” and “assigned male at birth” people and throw them into the opposite categories, or they’re trying to avoid that in a way that makes the attempt to avoid genetics self-nullifying, since the only “at conception” marker is genetics and it’ll fall back to that in practice no matter what.

Given that science knows at this point of multiple cases of women who have given birth to babies they carried normally despite having XY chromosomes, they’re gonna create a bunch of legal “men” who have given birth to children.

But they won’t care.

So.

Section three starts getting into the meat of some of the immediate attacks. Skipping down a little, here’s where things get spicy:

Section 3F starts justifying a federal ban on bathroom use by trans, nonbinary, and intersex people in businesses and schools. It doesn’t go directly there by name, but it declares the legal framework supporting TNI people to be invalid. Section 4D, further down, goes directly to that goal, banning TNI people from all “intimate spaces” – which, naturally, includes bathrooms.

As part of making that happen, Section 3B orders said agencies to use civil rights protections against trans/nonbinary/intersex people to “protect men and women as biologically distinct sexes.”

This is not a new strategy of attack. Similarly to how Trump in his first term tried to use civil rights law to attack health care availability for lesbian and gay people – declaring in regulations that carte blanche denial of medical care to queers was a religious right to be defended by the Justice Department – here they are ordering weaponisation of civil rights law against trans, nonbinary, and intersex people.

The intent here is to assert that any accommodation – or even the mere presence of – TNI people is a violation of the civil rights of anyone who objects, and agencies are directed to side with the complainant in all cases.

They follow through on this explicitly in the entirety of Section 5, which explicitly orders the Economic Equal Opportunity Commission, the Civil Rights division in Justice, and several other groups within the Federal government to take the position that the 1964 Civil Rights act and all other civil rights law are to be used to attack trans/nonbinary and intersex people in workplaces and “federally funded institutions” (schools et al) as violations of women’s rights.

The plain-text intent is that trans, nonbinary, and intersex people are an intrinsically harmful / criminal class and are to be persecuted by law. TNI people’s existence violates the rights of women, and will be punished accordingly.

They promised eradication; this is the first wave of attempted delivery.

Now, I left out a section, which contains an important additional change:

Section 3D raises the spectre of State Department travel document revocations. Passports. IDs.

I’ve read this a few times and I can’t tell if the wording specifically does or does not allow revocation of existing documents (as happened in Florida and Texas) or only on renewal or new issuances, and that’s an important question.

Given that these departments will get packed full of Heritage Foundation ideologues, I again warn everyone to expect maximalist interpretations and enforcement.

We should have a clearer idea on this pretty soon. Accordingly, it’s critical to watch for document revocations starting to happen. Particularly with passports. I suspect the lowest-hanging fruit will be passports with an “X” marker, as opposed to “M” or “F.” If that starts to happen, assume they are already crawling through records to find anyone whose documents they can revoke.

I have to admit, this one surprises me a little. In the migration waves from Florida, they were very happy to see queers leaving – in some cases actively taunting refugees on “X” and other social media from government accounts, telling them in nearly these words, “that’s what we want, get the fuck out.”

One might accordingly expect they’d want to leave travel documents in place to encourage national departures, but this implies otherwise.

I should also mention Section 4A, 4B, and 4C, which I never got to above. 4A and 4B bar trans women from rape shelters (despite being at high risk of rape; they see that as a benefit, not a problem) and women’s prisons. 4C further “shall ensure that no Federal funds are expended” for any transition support; in Florida, language like this has been used as part of a wider programme of forced detransition.

One can imagine a sequence where maximal enforcement leads to not just travel document revocation but prosecutions for applying for documents while trans, leading to prison sentences where you are forced to detransition. It’s the sort of thing they’d like to do, but there are a lot of steps between here and there. For now.

There are more sections; they are less sweeping. 3A requires agencies develop 30-day action plans to implement all this. 3C instructs all Federal agencies to discard the use of “gender” in favour of “sex,” and specifically the definition of “sex” described above. Sections 3E and 3G are all about “thou shall not talk about gender, only sex” and spending no money to support even the idea of “gender.”

Section 7 is an implementation deadline and revocation of all previous Biden administration protections of LGBT rights, and I say LGBT rights because they are specifically revoking an anti-bullying programme protecting all queer kids. They also specifically revoke a protective order for intersex children in this section, which is the de jour inclusion promised above. Q.E.D.

None of this is an accident, if you’re unsure. They wax nostalgic about how much they loved bulling queer kids, how much fun it was and how they want to do it again. No, really. Sometimes in those exact words. See the link right there, in this very paragraph? It’s an example of some of them saying exactly that.

They love hurting children. It’s genuinely sick.

Anyway.

It’s a full declaration of war against the existence of trans, nonbinary, and intersex people. Under no circumstances should it be read as anything but that. It does, fortunately, acknowledge that some of this EO cannot take effect without changes in law, as passed by Congress; they will attempt to include those changes in law in his demanded “one big beautiful reconciliation bill” this spring.

People do not understand what this EO really is. Most politicians won’t understand what this EO really is. The political media will not inform them.

Once again, it’s up to us.

Tell everyone. Tell your reps. Demand better. You likely won’t get it, but… you might. And you have to try, or you may as well go ahead and strap Elon’s inaugural Nazi salutes to your own arm now.

And keep a weather eye out for passport revocations.

That’s going to be the canary in this coal mine.

#fascism #transRights #uspolitics

#Facebook #FacebookAlternative #Friendica #Hubzilla #Streams #(streams) #Forte #fediVerse

Jupiter Rowland

2025-01-21 08:12:40

@utopiArte Friendica or, better yet, (streams) or Hubzilla.

Friendica has been around since 2010. It's the oldest surviving Fediverse project. It even predates diaspora* by several months. It was created with the very intent of having an alternative to Facebook that's better than Facebook.

Hubzilla was created in 2015 from a 2012 Friendica fork, all by Friendica's own creator. So it's older than Mastodon, too.

(streams) is from 2021, the most technologically advanced of the bunch. It was created by the same guy who also made Friendica, Hubzilla and everything in-between, and who still maintains it.

Just yesterday, I've published a comparison of all three with Mastodon.

There's also the (streams) fork Forte which is basically (streams) with a name, a brand identity and a license and without any support for the Nomad protocol, only using ActivityPub for everything. But I don't recommend it as long as it isn't officially declared stable.

"Unshittified, decentralized, and free" applies to all four. Friendica was relicensed by its new maintainers from the MIT license to the GNU Affero GPL in 2012. Hubzilla and Forte are still under the MIT license. And at least the core streams repository was intentionally released into the public domain.

CC: @Cory Doctorow @Rusty Shackleford

#Long #LongPost #CWLong #CWLongPost #FediMeta #FediverseMeta #CWFediMeta #CWFediverseMeta #Facebook #FacebookAlternative #Friendica #Hubzilla #Streams #(streams) #Forte

Mastodon vs Facebook alternatives

Comparison between Mastodon, Friendica, Hubzilla and (streams)

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