“Nothing About Us Without Us”: Disability Justice and Inclusive Sex Education for Students with Disabilities
by Pearl McAndrews, SIECUS Policy Intern
A 19-year-old woman with Autism and other learning disabilities using her laptop at home for school via Alexander Grey, Unsplash
In honor of International Day for Persons with Disabilities on December 3rd, SIECUS aims to highlight the importance of disability inclusion in sex ed. We know that access to comprehensive sex education (CSE) improves outcomes for students in many areas of life, and all students deserve education that is accessible, inclusive, and reflective of their experiences. Unfortunately, for students with disabilities, this isn’t often the case. Disability-inclusive sex ed must center on disability justice, medically accurate information, bodily autonomy, sexual agency, and consent.
A disability is defined as an intersection between an impairment that limits a person’s movement, senses, or activities, and the features of that person’s society, including whether needed supports are provided and the extent to which disability is stigmatized. This could include: learning disabilities, speech or language impairment, autism, Down syndrome, intellectual disability, attention-deficit/hyperactivity disorder, mental health conditions, mobility limitations, cerebral palsy, spina bifida, and genetic syndromes (e.g., Fragile X), among other disabilities, and may affect multiple body parts or systems. In this post, “disability” will be used as an umbrella term, and we will specify when referring to a particular disability or experience.
Disability Justice
The term disability justice was originally coined in 2005 by Sins Invalid, a collective of disabled queer women of color, including Patty Berne, Mia Mingus, and Stacey Milbern. Historically, disabled people have been denied the same civil rights, protections, and autonomy that non-disabled people hold, but they have also been at the forefront of movements to expand access and rights. Disability justice asserts that disabled people can and should drive the choices regarding their lives, education, and care, and deserve support in doing so. “Nothing about us without us” is a phrase central to disability justice which emphasizes the need for inclusive, disabled-led practices in policies that impact disabled people themselves. Disabled young people who are also LGBTQIA+ or students of color may have compounded experiences, facing ableism, racism, homophobia, and/or transphobia as they access their education, highlighting the need for an intersectional lens within advocacy.
The Importance of Sex Ed for Students with Disabilities
One central element of CSE is teaching about consent—which helps students learn to set boundaries, confidently say “no” in physical, social and emotional situations, teaches respect for others “no,” and encourages enthusiastic consent. Consent education also teaches young people how to identify manipulation, coercion, and shaming, which have no place in consensual interactions, especially physical and sexual ones. Additionally, bodily autonomy—the right to decide what happens to your own body without pressure from others—is central to disability-inclusive sex ed. These two concepts can be especially important in the context of the historical marginalization of people with disabilities, and the lack of agency afforded to them with their social, legal, and personal choices. When it comes to sexuality, disabled people are assumed to be “asexual” or incapable of experiencing sexual pleasure or desire, which disabled people themselves say is not the case. As a result, students with disabilities are often excluded from sex ed classes, or any materials they receive may not be accessible for different learning styles, abilities, or needs—creating another barrier to access.
Legislation around sex ed varies widely across the country, with only three states (Oregon, California, and Washington) including students with disabilities explicitly through required CSE. Two other states (Colorado and Illinois) require CSE if schools decide that sex ed will be taught. Only six states and the District of Columbia provide schools with optional resources to create an accessible curriculum for students with disabilities. However, with bills like the Healthy Youth Act in Washington state, disabled students can be included since “all curriculum, instruction, and materials must use language and strategies that recognize all members of protected classes.” When disabled students are an afterthought in the planning process, or not even considered, education falls short and fails students who need inclusive information the most.
Studies suggest that CSE, which includes instruction on consent, anatomy, communication, and decision-making strategies can serve as a preventative factor against sexual violence. Statistics show alarmingly high rates of sexual violence experienced by people with disabilities; between 40 and 70 percent of girls with disabilities are likely to experience sexual abuse before they turn 18, and up to three in ten boys with disabilities are at risk of sexual abuse before they turn 18. Youth with disabilities are also more vulnerable to coercive sex and are twice as likely to report sexual abuse than their non-disabled peers. When students are deprived of the chance to learn about enthusiastic consent, bodily autonomy, and boundaries in a school-based learning setting, their vulnerability to sexual violence is exacerbated. However, when provided, CSE can not only prevent vulnerabilities, but can also increase social inclusion through discussions of personal identity, healthy relationships, and self-esteem, bolstering connections for all students.
Nothing About Us Without Us
Returning to a central tenet of disability justice – nothing about us without us—what do people with disabilities feel is most important when it comes to their sexual health education? In an interview focused on sex and disability, Andrew Gurza, the creator of Disability After Dark and an activist around sex and disability, shared that when it comes to consent:
“…when you’re completely disabled, [it] goes a lot deeper. And I think we have to understand that it’s not just “yes” or “no” like we’re so used to understanding it. It’s if I say yes to having sex with you, I have to consent to your assistance to get out of my chair and all those things. And I have to make sure you’re comfortable. And if I say yes to allowing you to engage in a sexual relationship with me, I believe it’s a big privilege for a non-disabled partner to be entered into that space with me. And so I think consent does go a lot deeper, and I think we need to look at all those other factors, too when we talk about disability, sex, and consent.”
Not only do students with disabilities need to be included in classroom instruction, but topics and delivery must be inclusive and adaptable to whoever is in the room. For Bethany Gehman, a sex educator, advocate for Deaf student access, and founder of the sexual wellness center Jooux, classroom education should be inclusive, honest, and empowering for Deaf students. In her work, she stresses that ASL interpreters must sign sex ed terms accurately, without embarrassment or shame, to allow students to learn. As mentioned earlier, curriculum created for students with disabilities is often an afterthought. This can be even more true for students with intellectual or developmental disabilities (IDD). Dr. Christine Drew, who teaches sex education to students with ID at Auburn University in the EAGLES program, describes equity in disability inclusion as, “…not just getting students in the room, which is already a battle for students with intellectual disabilities, but also making the curricula accessible to them so that they can absorb what is being taught.”
At SIECUS, we firmly believe that sex ed is a vehicle for social change. Many of the oppressive forces in the world today could be mitigated and addressed through the skills, knowledge, and agency that students learn as part of comprehensive sex education. All students should be given access to inclusive and empowering education, regardless of ability, identity, or location so that they can work to transform their lives for the better.
So What Now?
We all have steps that we can take to advance inclusive sex ed in our communities for youth with disabilities. Some places to start are:
- Consider joining SIECUS’s Sexuality Education Policy Action Council (SEPAC) and help us develop sex ed policies that are inclusive of individuals with disabilities!
- Take action with our Community Action Toolkit.
- Contact your representatives to share your support of the Real Education And Access For Healthy Youth Act (REAHYA).
- Learn more about the intersection of disability justice and sex education with the resources below.
Resources by and for people with disabilities:
- Resources from Sins Invalid
- Disability After Dark Podcast
- Jooux Deaf Sexual Wellness Center
- Disability Visibility: First-Person Stories from the Twenty-First Century
- How to Get Disability Accommodations at School
- A Call for Inclusion: Improving Sex Ed for Individuals with Disabilities
Resources for parents, caregivers, and educators:
- Comprehensive Sex Education for Youth with Disabilities
- Health and Equity: The Advocacy Playbook for Health and Disability Rights
- Planned Parenthood’s Project SHINE
- Cripping Sex Education: A Panel Discussion for Prospective Educators
- Jooux Deaf Sexual Wellness Center
- STEPS2: Socialization To Enrich Participation & Support Sexuality at CUNY SPH
- Planet Puberty at Family Planning NSW Australia
- The SHEIDD Project at OHSU
- The EAGLES Program at Auburn University College of Education
Acknowledgements:
Many thanks to all of the people who contributed to the development of this blog post—Nawal Umar, Alison Macklin, Miranda Estes, Dr. Christine Drew, Regan Moss, and Dr. Emma K. Tsui. Additionally, I am beholden to the many disabled people whose work informed this post, and whose activism has made our world greater, more accessible, and more free.
SIECUS envisions sex education that is inclusive of all genders, sexualities, and bodies, promotes safety and security within communities, and provides a comprehensive understanding of gender, sexuality, and anatomy. The content, structure, and accessibility of sex education are each important in ensuring youth can communicate effectively, explore their own identities and values, and grow into sexually healthy adults.
References (Order of Appearance):
Three Decades of Research: The Case for Comprehensive Sex Education – Journal of Adolescent Health
10 Principles of Disability Justice – Sins Invalid
Moving From Disability Rights to Disability Justice – World Institute on Disability
‘Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights – New York Times
Nidhi Goyal – TEDxAmityUniversity
RCW 28A.300.475: Comprehensive sexual health education.
Cripping Sex Education – Accessible Media Inc.
Jooux Deaf Sexual Wellness Center
Sign Up for Email Updates
Interested in receiving the latest updates from SIECUS? Join our email list today.