About Project SHINE
Who we are
The Sexual Health Innovation Network for Equitable Education with youth with intellectual disabilities, or Project SHINE, was formed in Summer 2020. Project SHINE is a collaborative network of sexuality educators and researchers, self-advocates, caregivers, and disability-focused organizations seeking to fill a gap in sexuality education by creating more accessible, innovative sexuality education tools for people ages 16- 24 with intellectual and developmental disabilities.
To learn more about Project SHINE, see www.projectshinenetwork.org
Our Vision
We believe that people with disabilities deserve access to the fullest range of sexual and reproductive health information and care they need and want. Project SHINE envisions a world where youth with intellectual and developmental disabilities have equitable access to high-quality information and affordable health care, with supportive laws and policies that ensure the greatest autonomy and informed sexual well-being possible across the lifespan.
Our guiding principles
The SHINE Guiding Principles help the SHINE Network make decisions based on our shared values.
Project SHINE Guiding Principles
1
We believe sexuality is a part of every person’s life and that everyone experiences it in different ways. This includes people with disabilities.
Sexuality includes many things, like our bodies, relationships, identities, feelings, pleasure, health, and more.
2
We believe that people with disabilities (PWD) should have access to information about sexuality and sexual and reproductive health care, whether or not they plan to use that information.
We acknowledge that sexuality information has been kept from people with disabilities because of ableism*. That is not fair. We commit to creating more access with our work.
We believe education about sexuality should be:
- accurate
- accessible
- inclusive of pleasure and joy
- LGBTQAI+ inclusive
- equitable
- sensitive to trauma people may have experienced (individually, as a community and historically)
- responsive to elements of culture, language and disability type
- affirming and non-shaming
- age appropriate
3
We believe that people with disabilities should have options to get the information and support they need and want to make informed decisions about their bodies and their lives.
We advocate for laws and policies that support sexual and reproductive health rights. All people, regardless of their disability, sexuality, race, religion, age, gender, languages spoken, and class have the right to access comprehensive sexual health information and care.
4
We believe we have to learn from and listen to those most impacted by ableism and other forms of oppression. This includes disabled, LGBTQAI+ youth of color.
We are accountable to young people ages 16-24 with disabilities. That means we ask for their input and make decisions based on what they need and want.
We collaborate with a diverse group of people in terms of disability, sexuality, race, religion, age, gender, languages spoken, and class.
5
We believe that people with disabilities have the right to be connected to the care and information they need and want without bias, judgment, or shame.
This means that parents, caregivers, and those who support people with disabilities, deserve tools and sexuality-related education to be able to affirm and support people with disabilities and their sexuality.
6
We believe that all people learn in their own way, in their own time and that accessibility is not one size fits all.
This includes creating something new and accessible that people with disabilities can use directly and with others, if they choose. This also means making sure that information is provided in many different ways.
NOTE:
*Ableism: The discrimination against people with disabilities. Ableism sees people with disabilities as "less than" others.
*The Network has used both person first and identity first. This is to reflect usage by various members of our community.
How this toolkit was made
Step 1
Formed the Project SHINE Network and Advisory Board
Step 2
Conducted research to find out what kind of sexuality education youth, their families and those working in the disability field wanted.
Step 3
Organized a 9-hour “human centered design thinking lab” to make sense of our data. Decided to make a sexuality education toolkit focused on bodies and bodily autonomy.
Step 4
Formed a Design Collective of youth and adults who worked together over 2 years to build these sexuality education tools together with designers.
Step 5
Conducted more research to find out how youth and their families liked these sexuality education tools.
Step 6
Finalized the tools (in this toolkit you’re using!).
The Design Collective
This toolkit was created by the Project SHINE Design Collective, with support from the Project SHINE Network and Advisory Board. The Design Collective is a diverse group of youth and adults with expertise in sexuality and disability.
Evan Yankey
Evan Yankey uses “He/Him/His” pronouns and is an Assistant Coordinator for the Self-Advocacy Association of New York State. He has supported Project SHINE on the Design Collective and with the Advocacy Agenda and Storybank Team. He is excited about breaking down barriers for people with intellectual and developmental disabilities accessing sexual and reproductive health information.
Tatiana Calderon
Tatiana Calderon uses "She/Her/Hers" pronouns and is the Autism Initiative Coordinator for Sinergia's Metropolitan Parent Center. She has supported Project SHINE through being a part of the Design Collective and Advocacy Agenda.
Tanika Marshall
Tanika Marshall (she/her) works as a Supervisor of a Day Habilitation program for adults with I/DD for AHRC NYC. She is passionate about working to close the gap between people with I/DD and comprehensive sexual health education. She believes that all people, regardless of ability, should be able to explore aspects of their sexuality if they so chose.
Dimitri Theodore-Dumay
I’m Dimitri Theodore-Dumay. I use he/him/his pronouns, but I support the LGBTQIA+ Community. I go to school in Brooklyn and live in Brooklyn.
Shan Moten
Shan Moten (they/them) is a program manager at Rockwood Leadership Institute. As the former Project Manager for Project SHINE they supported design as a member of the Design Collective. Shan is passionate about expanding access to sexual health information for all!
Randa Dean
Randa Dean (she/her) is a public health and nonprofit consultant and sexuality educator. She is the Project SHINE Advisor, working closely with all the teams. Randa is committed to making sexuality education more accessible, inclusive, equitable, and available.
Isidore
Isidore Douglass-Skinner (He/they) is a black & autistic student hoping to study neuroscience and medicine. As a member of the queer community, and a youth designer for Project SHINE they believe in creating safe spaces for disabled, black, queer and questioning children.
Jackie Ackeifi
Jackie Ackeifi (she/her) is a sexuality educator and a member of the Learning & Practice team at Planned Parenthood of Greater New York. Jackie collaborates with the Design Collective and other SHINE network members on content development. Jackie believes that communicating about sexuality topics can be honest, engaging, and fun.
Marisol Getchius
Marisol Getchius uses “She/Her” pronouns and identifies as a person with a developmental disability. She is the Long Island Regional Organizer for the Self-Advocacy Association of New York State. Marisol has been a member of Project SHINE Design Collective and with the Advocacy Agenda. She feels this topic is long overdue, likes the collaboration between the organizations and people with intellectual and developmental disabilities will finally be empowered about their sexual health.
JC
JC Cortez (he/his) is an advocate for people with disabilities and an avid supporter of sexuality education for all. He is the Director of Training & Development and Project SHINE Project Coordinator at the Metropolitan Parent Center at Sinergia. JC is fervently dedicated to supporting the disability community and disability justice movement, especially within contexts of equity and sexuality education.
Thank you to our support networks!
Many people helped to create, research, and review the content of this toolkit. They helped to ensure it is accurate, accessible, inclusive, trauma-informed, and centers an equity-based approach. Thank you to:
- The Project SHINE Advisory Board
- The Project SHINE teams from Planned Parenthood of Greater New York; YAI; Self Advocacy Association of New York State; AHRC-NYC; Sinergia; and New Alternatives for Children
- Lisa Colarossi, Kate Collier, Marlene Riquelme, Siana Perez
- Josephine Imbimbo
- Dr. Sheryl White-Scott
- And so many more!
If you have feedback for the creators, please email: projectshinenetwork@gmail.com
This project is funded by Grant Number 1TP2AH000068-01-00 from the HHS Office of Population Affairs. Contents are solely the responsibility of the authors and do not necessarily represent the official views of the Department of Health and Human Services or the Office of Population Affairs.