In an effort to move forward into a more equitable community, where all families with PWS are effectively represented and have access to the necessary resources for this PWS journey, regardless of race, ethnicity, geography, gender identity, sexual preferences, language, disability, or socioeconomic status, PWSA | USA is honored to introduce our Equity Committee.
As stated in the Equity Committee Charter, the purpose of this committee is to, “advance equity, inclusion, and justice across the organization’s governance, advocacy, research, programs, family support, and community engagement. The Committee works to identify and dismantle systemic barriers that contribute to diagnostic delays, unequal access to care, underrepresentation in research and clinical trials, and disparate health outcomes for marginalized communities affected by Prader-Willi syndrome.”
We look forward to how this new committee can help shape the work of PWSA | USA and help us reach and support all families living with PWS.
Please welcome, Dhivya Venkataraman.
What inspired you to join this committee?
Having a family member affected by PWS makes this work close to my heart. The idea of being “rare within rare” really stayed with me, too. I think about people feeling unseen or having to fight even harder to find support within an already small community. I deeply believe everyone should have the resources they need to thrive, and I know our systems aren’t always designed that way. I joined this committee to help change that, so all communities and families receive the support, dignity, and care they deserve.
What do you think is one of the biggest challenges to equity in the PWS community?
I think one of the biggest challenges is that families don’t all have the same access to information, care, and support. Their lived experiences and needs vary based on race, culture, income, where they live, and other parts of their identities and circumstances. So much can depend on the resources you have and whether you have the time and energy to keep pushing for what you need. When awareness and resources are already limited, it can be especially hard for families whose experiences don’t fit within what is considered “typical”. I think we have to ask whose experiences we’re missing and make sure those families help shape the solutions.
What is one tangible thing you hope to achieve while on this committee?
I’d love to help PWSA | USA build on its ongoing efforts to reach more families by helping review and shape the information and resources we share. One tangible goal would be to take something families tell us is missing and work together to create or improve a resource that meets that need.
What kind of support do you need from the PWS community and/or this organization to do this work?
For those who don’t understand the work, take the time to listen or read and build your empathy for those who have different lives than yours. Just because someone else struggles more or differently, it doesn’t take away from your challenges. For those who do see the importance of this work, speak up. Don’t assume that everyone wants to help or knows how. If you hear someone undermining this work, do something about it or seek help. Continue to learn and be in the practice of building your awareness. Listen with an open heart and be willing to challenge your assumptions. And when you find yourself in rooms of power or privilege, ask yourself: who is missing?
I’m coming into this work with an open heart and a lot to learn. I’d be grateful for people’s willingness to share their experiences and help me understand what matters most to them. I believe making things better starts with listening and taking the time to understand each other.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.