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us the best way to get it right is to listen to us autistic people argue for a stronger voice in research 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 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 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 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 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 empowerment requires the appropriation of power for participants beyond knowledge of the source of their disempowerment environmental education researchers as environmental activists 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 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 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 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 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 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 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 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 accordions labelled what is provide definitions context and further reading support our mission pattie gonia made it through the night official video youtube in the dark we were brave took a spark to create our own light our own fate our own sound and they ve tried every day to make us the mistake but it gave us the strength to stand out we made it through the night i can t explain it but i wouldn t change it we sing cause we made it we made it through the night no one can erase us we re here and we re staying we sing cause we made it we made it through the night pattie gonia made it through the night official video youtube four pillars everything runs through them our pillars ️ the place where we belong does not exist we will build it james baldwin via gayatri sethi in unbelonging our community first model operates on four interwoven pillars mutual aid monthly no strings attached cash grants and emergency assistance learning spaces passion based learner driven education aligned with neurodivergent strengths and needs open research participatory emancipatory research and open access publishing that restores the humanities to science creator grants monetary support for creators across disciplines to empower their creative process recognizing its vital role in driving positive change and enriching communities learning space stimpunks learning space offers community and space for passion based human centered learning with purpose our learners collaborate on distributed multiage cross disciplinar y teams with a neurodiverse array of creatives doing work that impacts community via equity access empathy and inclusivity we create anti ableist space for the neurodivergent and disabled people most ill served by empty pedagogy behaviorism and the rejection of equity open research our emancipatory research efforts focus on the sweet spot of digital sociology neurodiversity studies disability studies and syncretism in the open we improve the scientific experience for the disabled and the neurodivergent by restoring the humanities we bring voice into empirical constructs and translate voice into academic comprehension ️ mutual aid staying alive is a lot of work for a disabled person in an ableist society we provide real help against the onslaught through mutual aid we believe that direct support to individuals is the most effective approach to alleviating the barriers and challenges that prevent neurodivergent and disabled people from thriving creator grants we pay creators to create we buy space to breathe and make creativity is a vital force that drives positive change in society we provide financial support to creators across various fields including art advocacy research and beyond we aim to enable creators to fully immerse themselves in their work we recognize the importance of investing in the creative process and the impact it can have on communities and individuals respect due to learning with an arsenal of permanent pillars piercing through the surface of artificial services life commits by swamburger and scarlet monk of mugs and pockets learn more about our pillars stimpunks foundation sponsors and employs neurodivergent and disabled creators and amplifies their work to our clients and throughout society we exist for the direct support and mutual aid of neurodivergent and disabled people we pay neurodivergent and disabled people to work and live we pay expenses like rent and medical bills as well as buy medical equipment or other necessities unlike most foundations we support organizations and individuals directly maximizing our impact in neurodivergent and disabled people s lives and communities individual grantees do not have to go through third party organizations or government agencies to access support according to the human rights funders network in 2021 one in seven persons in the world has a disability yet grants for persons with disabilities constitute just 2 of all human rights funding further accessing these grant funds is challenging and many application processes present barriers to entry for individuals who need to apply for assistance we believe that direct support to individuals is the most effective approach to alleviating the barriers and challenges that prevent neurodivergent and disabled people from thriving in neurotypical and ableist environments our application process is simple and our direct payments have the potential to transform how neurodivergent and disabled people access philanthropic capital 750 a month no questions asked improved the lives of homeless people 750 a month no questions asked improved the lives of homeless people los angeles times denver basic income project s cash has saved lives homeless participants say thanks to 500 a month of basic income for six months homelessness reduced by two thirds providing 7500 each to 50 homeless people resulted in a savings of 8100 per person according to new unconditional cash grant experiment robust covid relief achieved historic gains against poverty and hardship bolstered economy center on budget and policy priorities more receipts direct support to individual s works we complement mutual aid to creators with learning spaces for creators stimpunks foundation serves neurodivergent and disabled people unserved by public and private schools via equity access empathy an...
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