Projects

 

Current Projects

I am proud to partner with several amazing colleagues and organizations in the community on a variety of ongoing collaborative projects in addition to some projects of my own. Below you will find details about a few of these projects as well as ways that you can learn more and/or help support them if interested!

 

Image result for community based participatory research

 

Research has the power to change lives. I am involved in various research endeavors including conducting social science and education research as a budding “early career” researcher, protocol review and monitoring in my appointed role as an IRB member of the largest health program in my state, and global research advocacy within various HIV clinical trials networks. As a woman of color with disabilities, I strive to increase the visibility of minority investigators. Additionally, I am passionate about integrating the community into all facets of research – design, proposal, implementation, data collection, recruitment, retention, dissemination of results. Community members are a necessary and valued part of all research; intentional inclusion and amplification of the community perspective and voice is critical.  

This fund, affectionately nicknamed the “Autistic People of Color” Fund, was founded in 2018 by Lydia X. Z. Brown, a friend and disability justice activist, and is fiscally operated by AWN Network. I am proud to be one of the co-coordinators of the fund. We offer microgrants to Autistic people of color to provide direct financial support and assistance for housing, food, medication, legal fees, adaptive technology, education, entrepreneurial endeavors, etc.

Within the first six months of launching the fund, we were able to help grantees from ~30 different households in the US, Canada, South Africa, and Australia with microgrants that enabled them to flee abusive relationships, avoid being evicted from their home, obtain prescriptions, attend trainings, purchase equipment, and more.

This fund helps to address a huge unmet need in our community, and we are ALWAYS in need of donations of any amount. Donations are fully tax-deductible and 100% of ALL money earmarked for the fund goes directly to providing support.  

Advocacy Without Borders is a small initiative and labor of love that I began a few years ago – it launched on my birthday! It is an all-volunteer run project designed to encourage “lay person” advocacy among people of all ages. Many people are hesitant to engage in advocacy (for themselves as well as for others) because they assume a certain skill set is needed or that they lack the time and resources they feel are necessary to be effective. However, they are wrong! Anyone can be an advocate. Anyone. There is no “right” way to do it; all it takes is the desire.

Our mission is to encourage ALL people to make a difference…regardless of their differences.

Advocacy Without Borders exists because ALL voices matter, and because all people deserve an opportunity to strive for growth and change.

Affirming that “stakeholders,” “clients,” “self-advocates,” etc. should be actively engaged in our own movements, we promote social justice via collaborative partnerships (where allies are valued not above, but alongside those for whom they advocate), education and community engagement.

We strive to be an inclusive, cohesive community that welcomes all who support our cause.

To date, our activities have included grassroots community mobilization and awareness activities, social media advocacy, presentations, occasional qualitative research, and technical assistance. Currently, we are providing support for a student-led initiative to address hunger in impoverished youth as well as curriculum review and program evaluation for a local AIDS service organization.

                                                                                                      

As stigma literally kills, working to help eradicate misinformation, societal bias, and stigmatizing communication has been a passion of mine for some time. Although stigma exists in many forms, I typically focus on stigma surrounding race, disability, and HIV/AIDS status.

There are many people and groups working tirelessly to dismantle stigma and foster greater acceptance and inclusion of marginalized communities in various ways; my current work in this area is largely been concentrated within the ACTG clinical research network as well as on social media platforms. Recent ACTG accomplishments include successfully campaigning for a revision of the network mission statement to remove stigmatizing language, securing an annual community address at the annual plenary, and obtaining approval to replace the antiquated term “subject” with “participant” in all official correspondence. I have also helped to augment community efforts to help eradicate stigma in various types of formal and informal communication, including colloquial speech, journalism, and medical terminology in a few small ways including writing as well as short informational videos (such as this one that was published by Mark S. King of My Fabulous Disease).

                                                                                              

Several projects are in the works related to Autistic people of color, and as a co-editor of the first anthology on race and autism “All the Weight of Our Dreams: On Living Racialized Autism” (along with Lydia X. Z. Brown and E. Ashkenazy), as Chair of the AWN Network Autism and Ethnicity Committee, and as an individual I couldn’t be more excited. Our anthology has been included in the curriculum of several undergraduate and graduate courses as well as diversity and disability trainings.

We have developed an outreach initiative to provide the anthology as a free resource for libraries at HBCUs, HSIs, tribal colleges, and urban public library branches. I am extending that outreach by cultivating an extensive social media list of Autistic people of color to be shared with the public. Finally, it is our hope to create an audiobook version of the anthology in the near future.

Respectfully Connected: Journeys in Parenting and Neurodivergence is a group blogging project celebrating neurodiversity in families. Its various authors, of which I am one, come from different parts of the world (the United States, Australia, and Canada). We share stories on the Respectfully Connected website and its social media platforms to model parenting styles that promote neurodiversity acceptance, facilitate respect and connection, and celebrate diversity. Our team has recently completed a compilation of our work available free of charge to the public and is developing an electronic or audio version for greater accessibility.

Wanna check out some of my previous projects?