Organizations

Speaking Up For Us (Maine Based): “Speaking Up For Us (SUFU) is run by and for adults (maybe like you) who live with developmental disabilities. SUFU shows us how to have more control of our lives, and use our voices to “Speak Up” for issues that are important to us and all people with disabilities.”

Elevatus Training: “As national leaders in the field of sexuality and intellectual, developmental disabilities and autism we offer evidence and trauma informed curriculum, online training, in-services and workshops to help professionals, educators, self-advocates and parents skillfully and confidently navigate the topic of sexuality.” Their website also offers an extensive resource section. (This is also where our trainer, Emma, learned how to teach sex ed!)

Open Future Learning: in our humble opinion Open Future Learning is one of the most useful and fundementally self-determination focused training organizations in the field of intellectual disabilities. Specifically designed for direct support providers.

Maine Developmental Disabilities Council (MDDC): “The Council is a partnership of people with developmental disabilities, family members, and state and local agencies and organizations. We are committed to creating a Maine in which all people are valued and respected because we believe communities are stronger when everyone is included. To do this, we create and support policy advocacy for individuals with developmental disabilities.

Disability Rights Maine (DRM): “DRM is a non-profit 501(c)(3) organization and is Maine’s designated Protection & Advocacy agency for people with disabilities. This means we represent people whose rights have been violated or who have been discriminated against based on their disability. We also provide training on rights and self-advocacy and we advocate for public policy reform.

Maine Down Syndrome Network (MDSN): “Maine Down Syndrome Network (MDSN) is a network of families, professionals, and community members living in the state of Maine, who share the common goal of promoting awareness and acceptance of people with Down syndrome.  We offer support, education and advocacy to our members, and to our communities.”

Rooted In Rights: “We produce media to amplify perspectives from the disability community. We produce videos, blog posts, and social media campaigns that center people with disabilities. We strive to include diverse, authentic representation of multiply-marginalized disabled folks, including those that identify as BIPOC, LGBTQIA+, and immigrants.”

Websites

Disability Justice.Org: This links to a page regarding prevalence of sexual assault of adults with intellectual and devleopmental disabilities.

The Birds And The Bees: “This website is committed to providing everyone with comprehensive sex education. We provide curriculum, resources, and information on different topics in the area of sexual health.”

Out Of the Shadows, The Legacy of Pineland: An interactive website created by Maine Developmental Disabilites Council highlighting the history of institutionalization in Maine, and those who survived it.

Sex Ed To Go: “Here to make sure you have the sexual health knowledge you need to make the best decisions for your health and life. Courses are FREE, short and available in English or Spanish.”

Books

What We Have Done by Fred Pelka: “Fred Pelka… presents the voices of disability rights activists who, in the period from 1950 to 1990, transformed how society views people with disabilities, and recounts how the various streams of the movement came together to push through the Americans with Disabilities Act of 1990, the most sweeping civil rights legislation since passage of the Civil Rights Act of 1964”.

Voices of Pineland, by Stephen T. Murphy: “…tells the story of the Maine School for the Feebleminded, later known as Pineland Hospital and Training Center. Based on an in depth analysis of annual institutional reports, newspaper clippings, legal documents, and other archival sources as well as interviews with former residents, their family members, and staff, Murphy traces the history of the Maine institution from its founding in 1908 to its eventual closure in 1996.” Note: This book is a challenging, frightening, and enlightening book about the recent history of abusive institutionalization in Maine. This history is important to know. However, since Pineland ultimately closed in 1996 there are still people alive today, in and outside of Maine’s disability services systems, who survived it. When reading this book, please do so with the knowledge that, if you are living here in Maine, you could be reading about yourself, your neighbors, your parents, your friends. Please do so with care.

The State Boy’s Rebellion by Michael D’Antonio: “The State Boys Rebellion conveys the shocking truth about America's eugenic era through the experiences of a group of boys held at the Fernald State School in Massachusetts starting in the late 1940s. In the tradition of Erin Brockovich, it recounts the boys' dramatic struggle to demand their rights and secure their freedom. It also covers their horrifying discovery many years later that they had been fed radioactive oatmeal in Cold War experiments -- and the subsequent legal battle that ultimately won them a multimillion-dollar settlement.”

Beyond All Expectations; The Story of Paige Barton, By Joanne Putnam: “… the remarkable story of how Paige overcame tremendous societal barriers to gain independence from institutions, obtain her Bachelor's degree, and earn a professional position in state government advocating for people with disabilities. Although most suspected she had Down syndrome, they were wrong, and Paige's true disorder was not discovered until she was 35.” Note: Paige Barton lived in Maine for the much of her life and founded Speaking Up For Us, our state wide self-advocacy group.

Audio and Video

Series: Abused and Betrayed: A special series from NPR examining the prevalence of the sexual abuse of adults with IDD.“At a moment of reckoning in the United States about sexual harassment and sexual assault, a yearlong NPR investigation finds that there is little recognition of a group of Americans that is one of the most at risk: people with intellectual disabilities.” This link includes an article, multiple first hand accounts, and an audio version. Note: This link includes first hand accounts from residents of Maine.

Sex Ed for Individuals with I/DD: “The National Council on Independent Living’s (NCIL) new project helps people with intellectual and developmental disabilities (I/DD) learn about sex. Some of the things we talk about in this project are: What sex is,What gender is, What a healthy relationship looks like, How someone can get pregnant, How to protect yourself against sexually transmitted diseases and infections. There are ten videos. You can watch the videos in any order you want.”

Parenting Without Pity: “In the(podcast) series, we ask disabled parents about their own childhoods and what they wish their parents would have known. We also ask how they identify – or not – with a disability identity and disabled community, and what their advice would be for parents raising disabled children.”

Hey you- are there other resources you know and love and that should be on this page? Dont hesitate to reach out with suggestions, the more information the better!