1 of 12

Reproductive Rights and Disability: 

Storytelling as Advocacy for Organizing and Policy 

Author(s): Angie Murthy (College of Medicine), Madison Turner (Physical Therapy), Abby Caughman (Disability Studies) 

Group Advisor: Claire McNorton (Planned Parenthood of Illinois)

1

2 of 12

Background & Aims

Background

  • There is a lack of sexual education for persons with disabilities (PwDs), especially those with intellectual and developmental disabilities (IDD).1 
  • Storytelling can be an accessible tool for self-advocacy for Disabled individuals.2, 3
  • Few shared stories exist at the intersection of disability, sex, and reproductive rights. 

Aims

  • Highlight the sex-ed experience of PwDs, specifically those with IDD. 
  • Demonstrate to PwDs how & why their stories are powerful and important tools for advocacy.

2

3 of 12

Research Question

For individuals with intellectual or developmental disabilities (IDD), what level of sex education did they receive or comprehend during their adolescence to prepare them for their future?

3

4 of 12

Methods Timeline

October 2023

Project proposal created with mentor from Planned Parenthood of Illinois (PPIL)

Wrote our own sex-ed story

November 2023

Within R/L group, storytelling training received from Program Manager at PPIL

Created draft of Sex Ed Storytelling Training Presentation & remote submission form

December 2023

Trainees made initial introduction with disability organizations (IL Self Advocacy Alliance, DisabilityLead, Access Living, UIC’s Disability Cultural Center, Total Link 2 Community)

January 2024

Revised Storytelling Presentation to incorporate suggestions made by collaborating disability organizations

4

5 of 12

Making Workshop Accessible

Feedback from Organizations & Community Leaders

  • Disability Lead: Less Text, More Plain Language
  • Total Link 2 Community: Trauma-Informed

​

5

6 of 12

Methods Timeline (cont.)

February 2024

Follow-up meetings with disability organizations to determine availability of their members & interested participants

Finalized date & time for storytelling workshop

March 2024

Collaborated with disability organizations to promote story-telling training event on their social media and websites

Promoted training and remote submission form within IL LEND cohort

March 27, 2024

Presented virtual story-telling training

April 2024

Analyzed collected stories for common themes in the participants access and understanding of sexual health education 

Created poster & poster presentations

April 4, 2024

Presented poster at UIC Minority Health Conference

April 25, 2024

Presented poster presentation at IL LEND Open House

6

7 of 12

Storytelling Collection Worksheet 

7

8 of 12

Key Findings

THEME #1: LIMITED, HEALTH-BASED CONTENT

    • Focus on STI, childbirth, condom use 
    • No mention of pleasure or consent and NOT trauma-informed 

THEME #2: INFLUENCE OF RELIGION & ABSTINENCE 

    • Abstinence as gold standard alongside messages of shame and immorality 
    • Religious doctrine as major source of what's ‘right and wrong’ when it comes to sex

​

“All I learned about are the following: what STIs look like, how to make a baby and what intercourse looked like (sans the porn), wear a condom no matter what, practice abstinence until marriage. I was lucky to receive that much sex ed, but looking back, part of it was because I was passing as neurotypical.”

“I grew up in the Bible Belt where the norm/expectation was to wait until marriage and if you didn’t, then you were ‘sinful.’ … I didn’t really learn anything about sex except not to have it.”

the

“The first thing I understood about sex was that it was shameful… the shame I was taught to feel around sex when I was 12 would follow me for a long time.” 

8

9 of 12

Key Findings (cont.)

“I [eventually] made a wonderful friend who was passionate about sex positivity and who taught me more about the mechanics of sex and healthy relationships than any classroom ever did."

“It was simply understood that… our siblings with Down syndrome would likely never be … believed to have the capacity to consent to sex or sexual behaviors… While I understand that my brother does not have the capacity for consent, I believe that my sister is capable of it, especially with appropriate education and counseling.”

THEME #3: ASSUMPTION OF ABILITIES 

    • Underestimation of ability to understand complex topics 
    • Erasure of invisible disability due to masking/passing

THEME #4: FRIENDS & INTERNET AS EDUCATION 

    • In absence of proper education, friends and internet become the source of sex ed 
    • These sources can be inaccurate, inappropriate, and spread misinformation, especially around consent and boundaries 

9

10 of 12

Key Findings (cont.)

THEME #5: A CALL FOR ACCESSIBLE, COMPREHENSIVE SEX EDUCATION 

    • There is a clear call for advocacy incorporated into EVERY story!
    • Demonstrates how participants used their story to articulate a gap/need and ask audiences for support in finding a solution 

“I encourage schools and other centers for education to create and provide plain-language, culturally affirming resources for ALL disabled students where they learn many things about healthy relationships, sexualities, pleasure, gender identity, parenting, and more! No matter how complex or straightforward things are in the sexuality and gender spectrums. 

the

Without shame 

Without fear 

Without being bamboozled”

10

11 of 12

Next Steps

  • Increase number of participants
  • Improve promotion of remote storytelling collection form for self-advocates and support people unable to attend virtual synchronous training
  • Use de-identified stories during PPIL's Advocacy Day (May 8, 2024) to advocate for better sex education in public & federally funded schools
    • KYSHA: Keep Youth Safe and Healthy Act

​

​

11

12 of 12

References & Acknowledgements

  1. McDaniels, Brad, and Allison Fleming. "Sexuality education and intellectual disability: Time to address the challenge." Sexuality and Disability 34.2 (2016): 215-225. 
  2. Kimball, Ezekiel W., et al. "College students with disabilities redefine activism: Self-advocacy, storytelling, and collective action." Journal of Diversity in Higher Education 9.3 (2016): 245.
  3. Trevisan, Filippo. "Crowd-sourced advocacy: Promoting disability rights through online storytelling." Public relations inquiry 6.2 (2017): 191-208. 

​

12