Our Lives, Our Choices, Our Rights!

How we wrote this guidebook

The Idea

This guidebook started with a conversation between Pauline and Oscar in 2021. Pauline had been running Rainbow Groups and leading training for almost 17 years. Oscar was working as Pauline’s assistant and was also a PhD student in special education at Boston University. Pauline was speaking to Oscar about how she wanted to do whatever she could to support LGBTQ+ people with disabilities. Oscar proposed that they do a research project together to learn more about the experiences and ideas of LGBTQ+ people with intellectual and developmental disabilities, and Pauline was on board. With small grants from Boston University and approval from the Institutional Review Board, Oscar and Pauline decided to start the research project that led to this guidebook. We feel it is important to compensate people for their time and effort, so we used the two grants we were awarded from Boston University to pay everyone who contributed to this project, which includes the research team, interview participants, self-advocate storytellers, graphic designers, family members, and disability professionals.

The Research Team

Oscar started as the lead researcher for the interview study and Pauline, Nora, and Fran were co-researchers on the project. At the start of the project in September 2021, the four of us met to develop interview questions. We then met frequently throughout the next year and half, sometimes every month, sometimes every week. Together we learned from the interviews, discussed the themes from the participants’ lives, then wrote about the participants and ourselves to put together this guidebook.

Interviews, Part One

The research team wanted to know the strengths and the struggles in the lives of LGBTQ+ adults with intellectual and developmental disabilities, and to hear what supports and resources could help to make the world a better place. They created a list of questions they wanted to ask the participants. These are some of the questions they chose for the interviews.

  • What was it like for you coming out as an LGBTQ+ person?
  • Is there anyone in your life who accepts you? How do you know they accept you?
  • Is there anyone in your life who does not accept you? How do you know they do not accept you?
  • Is there anything that is hard about being an LGBTQ+ person with a disability? What is hard?
  • Do you go places to meet other LGBTQ+ people (online or in person)? Where do you meet other LGBTQ+ people? How do you feel there?

We also asked demographic questions, such as the state where they lived, their age, gender and sexual identities, and their race or nationality.

Oscar created a flyer and a video and sent it to Rainbow Groups and personal contacts all over the country so he could find people to interview.

After a few months, Oscar had interviewed 23 LGBTQ+ adults with intellectual and developmental disabilities from across the country. We are glad that we were able to interview people with a wide range of gender and sexual identities, with a variety of disabilities, and of different ages and racial and ethnic identities.

These tables give a summary of the gender and sexual identities of the participants we interviewed.

Gender IdentityNumber of Participants
Cisgender man11
Transgender man2
Cisgender woman2
“Female, I guess”1
Transgender woman1
Half and half1
Sexual IdentityNumber of Participants
Pansexual demisexual aromantic1
Not specified1

Many of our participants said they had an intellectual disability, cerebral palsy, or were autistic. Many people had multiple disabilities. Here is a table with all the disabilities of the participants we interviewed.

Disability IdentityNumber of Participants
Intellectual disability4
Cerebral palsy4
Down syndrome2
ADHD, PTSD, fibromyalgia1
Asperger syndrome1
Asperger syndrome, depression, PTSD1
Autism, ADHD, brain injury1
Autism, ADHD, intellectual, physical, and hearing disabilities1
Autism, anxiety disorder not otherwise specified (ADNOS)1
Autism, bipolar disorder1
Autism, Ehlers-Danlos syndrome, ADHD, learning disabilities1
Autism, schizophrenia, cognitive disability1
Autism, Sotos syndrome1
William syndrome1

Each color on this map shows the state where each of the participants were from. Many of our participants were from the Northeast.

Massachusetts (4), New York (4), Rhode Island (3), Illinois (3), Vermont (2), Oregon (2), Michigan (1), Ohio (1), Virginia (1), California (1), Connecticut (1)

We interviewed adults over age 18. The youngest participant was 26 and the oldest was 65. Here is a chart showing the ages of the participants we interviewed.

Age Range Number of Participants
20–29 8
30–39 6
40–49 6
50–59 2
60–69 1

We know that race and ethnicity impact each person’s experience of the world and what it is like to be LGBTQ+ and to have a disability. We wanted to interview people with all different racial and ethnic identities. This table shows how the participants described their racial and/or ethnic identities in their own words.

Racial and/or Ethnic IdentityNumber of Participants
White or Caucasian15
Black or African American3
Biracial, Black and White2
Hispanic/Latino and White1
Irish and Puerto Rican1
Pakistani Muslim American1

Oscar interviewed each participant over video or phone call. Each interview was about 30 minutes. The shortest interview was 9 minutes and the longest interview was 58 minutes. One participant emailed typed responses. Oscar used software to transcribe each recorded interview, which created about 300 pages of transcript text.

Analyzing the Data

The research team was most interested in (1) the struggles that people went through, (2) the positive support they experienced, and (3) their ideas of improving the lives of LGBTQ+ people with intellectual and developmental disabilities. This information would help them to come up with a good project idea. Oscar read through each interview and pulled out every quote where a person talked about one of these three topics. Then he sorted all the quotes into categories. For example, many of the struggles were about being rejected by family, so Oscar sorted these into the “Family Rejection” category. One positive support that some participants talked about was having a mentor, so Oscar sorted these into the “Mentor” category. Once Oscar sorted all the interviews, he showed all the categories to the co-researchers for a discussion. Oscar also wrote a few short, plain language vignettes to summarize some of the participants’ experiences. Here is an example of one of those vignettes.

avatar of Melissa
Melissa is gay and doesn’t like gender labels or pronouns. Melissa is a very sexual person but does not have a dating life because people only see her disability and don’t get to know her. Melissa does not live near places to meet gay women and does not want to always meet on Zoom. Melissa thinks that people need to talk more about sex in the disability community. Melissa does not feel safe talking about Down Syndrome and sexuality. Melissa tried to talk to a teacher about being gay but the teacher did not know what to say. Melissa advocates for LGBTQ+ people with disabilities to get sex education. Melissa has some supportive family but does not have a lot of friends. The Pride Center near Melissa does not understand intellectual disabilities. Service providers don’t get to know Melissa and just act like babysitters. Melissa likes to be free and choose what to wear.

Together we talked as a team about the struggles people went through, the supports they had, and their ideas for improvements. Then, based on everything we learned, we talked about what would be a good project to help the LGBTQ+ and intellectual and developmental disability community.

Guidebook Idea

We decided that we wanted to write a guidebook for supporters about LGBTQ+ people with intellectual and developmental disabilities. We wanted the guidebook to have information about gender and sexual identities, sexuality education, and supporting people to express themselves. We also wanted to include interactive activities and worksheets that supporters and self-advocates could use. We decided to include many quotes and stories from self-advocates in the guidebook.

Interviews, Part Two

Once we had our guidebook idea, we wanted to get feedback and ideas about the guidebook from our participants. Oscar contacted everyone again for a second interview. He conducted second interviews with 19 of the original 23 participants. This time Oscar asked specifically about topics for the guidebook. For example, he asked, “What topics should someone learn about if their job is to support LGBTQ+ people with intellectual and developmental disabilities?” and “What are some things that LGBTQ+ people with intellectual and developmental disabilities might need help with?” He also asked about how parents can be supportive and which topics should be taught in sexuality education classes.

Writing the Guidebook

The members of the research team, who are the guidebook authors, shared ideas for topics that could be in this guidebook. We also chose topics based on the categories and themes from the interviews. We turned the topic ideas into an outline of the guidebook. Then we followed this step-by-step process to write each chapter.

  1. The co-researchers shared ideas for the chapter, and Oscar took notes.
  2. Oscar wrote a first draft of the chapter based on both rounds of interviews and the notes.
  3. Oscar read the chapter draft out loud and the co-researchers gave feedback and suggestions.
  4. Oscar updated the draft based on the co-researchers’ feedback.
  5. Finally, the chapter draft was set aside until it was time for graphic design and stakeholder feedback.

Oscar also met with the co-researchers and other self-advocates to collect personal stories for the self-advocate story chapter. We have not finished all of the chapters that we hope to write one day, but we decided to post this first edition. We plan to update the guidebook each year, so it is never outdated.

This guidebook cannot represent all LGBTQ+ people with intellectual and developmental disabilities. Each of the authors and participants can only speak for themselves. Each person has many different identities and life experiences that make them unique. We hope you will also learn from other stories and resources outside of this guidebook, so that you can continue to learn about the diversity of people’s identities and experiences.

Graphic Design

We chose to use plain language, large font, and pictures so that the guidebook would be clear to read and understand. Kamran Khan helped us to format the guidebook and make the beautiful pictures and charts. Thank you, Kamran!

Stakeholder Feedback

After we wrote all the chapters, collected the stories, and finished the design, we wanted to know what caregivers and professionals thought about the guidebook. We wanted to find out if they understood the guidebook and if they thought the guidebook was useful. We asked family members and professionals to read some of the chapters and give us feedback. We then edited the guidebook based on the feedback. For example, we talked to a social worker who helped us include more information about mental health and emotions.

Spreading the Word!

Finally, after all the interviews, meetings, chapter writing, and feedback, we felt that the first edition of the guidebook was ready to be shared. We hope that this guidebook will be read by family members, disability service providers, self-advocates, personal care attendants, teachers, and anyone else who might be in a role supporting people with intellectual and developmental disabilities. We post this guidebook on our website, email it out to organizations, and share it with our friends and family so that people can learn more about supporting LGBTQ+ people with intellectual and developmental disabilities. We hope you will read our guidebook and send it to anyone you know who might like to read it. There is always more to learn, so please also check out the resources section and reach out to us about doing an online or in-person training.