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!
Research has the power to change lives. My involvement in various research endeavors ranges from conducting social science and education research as a transdisciplinary researcher, peer research and consulting, protocol review, global research advocacy within various HIV clinical trials networks, and serving two terms as an appointed external IRB member of the largest health program in my state. 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.
Our nonprofit arm, Advocacy Without Borders (a 501c3 charitable organization whose website is www.AdvocacyWithoutBorders.org) is a small initiative and labor of love that I began several 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. We recently provided 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. We are currently seeking sponsorship for several projects that will enable us to provide education to the public as well as direct support to marginalized groups.
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. Notable 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, allergy and infectious disease research across the National Institutes of Health, and medical terminology in a few small ways including writing as well as short informational videos (such as this one about HIV stigmatizing language that was published by Mark S. King of My Fabulous Disease and this one about disability self-acceptance from Project Mistag).
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 completed a compilation of our work available free of charge to the public and hopes to develop an electronic or audio version for greater accessibility.
I am involved in ongoing collaborative awareness and education work related to mental health, particularly with regard to women, youth, LGBTQIA+ communities, individuals with dual mental health and other diagnoses (namely HIV and/or developmental disability), and people of color. Tasks include training, consulting, and related work. I also include relevant information pertaining to this topic on my small but growing online resources list; you are welcome to review and/or download as desired: Multicultural Mental Health Resources
Access = justice. Access = inclusion. Access = love. Yet…so much of our world unjustly denies or limits access to others, which causes many to be excluded. This is something we should ALL be striving to change, period. That word “all” includes me; though I believe accessibility is critical and I try to “live” inclusion, not just talk about it, if I am being fully honest, I cannot ignore my own culpability. I recognize that it’s not just others who need to change in order to dismantle our ableist society…I too have improvement that needs to happen in this area. Though it’s not intentional, the fact is, I have work – including content on this very website – that is not as accessible as it should be. So I’ve made a personal commitment to begin documenting my efforts to change that for the sake of accountability and will publicly share periodic updates. Additionally, I am making a concerted effort to include accessibility information on my resources page.