Let’s Talk about Sex and Disability

This article was written by Amber Melvin. It was originally posted on the Unite for Reproductive and Gender Equity (URGE) website on February 19, 2015. It has been posted here with both her permission and the permission of URGE.

 


 

Please note this article uses the term “disabled person” rather than the person-first language of “person with a disability” to acknowledge how disabilities are not a result of one’s body, but disabilities are created by structural barriers that make it more difficult for folks with different bodies to navigate the world.

Picture of Amber Melvin with purple hair holding a sign that says 'Pro-Health Pro-Life Pro-Woman Pro-Choice'Disabled people have sex. Disabled people sometimes have sex with able-bodied partners, sometimes with partners who are also disabled, and sometimes disabled people have sex with themselves. These statements are often shocking to the uninformed because many people do not think of disabled people as being interested in or capable of having sex.

Some people’s ability to experience sexual pleasure may be altered by their impairment or disability; however, this is not often the case.  While there has been some research into the sexual dysfunction of people with physical impairments, outside of the physical limitations of the body, there has been very little analysis of what we need to do to meet the sexual needs of disabled people.

The issues for disabled people in regard to our sexuality are diverse and complicated; therefore the solutions for them will likely be just as complex.  Sadly, whether it is academic research or training for health professionals, the reality and needs of disabled people who want to have healthy sex lives is largely ignored.

As a teenager with a visible impairment, sexual and reproductive health was not discussed with me until my late teenage years.  While my peers were hearing about the birds and the bees, the only nod to my future sex life was when I was urged to see a geneticist to discuss the likelihood of having disabled children.

None of my healthcare providers ever mentioned sexual activity or protection from sexually transmitted infections (STIs) to me. My only interaction with medical professionals regarding sexuality and reproduction was done in a way that could have potentially dissuaded me from having children in the future.

Like many disabled people, I was treated like a case to be solved.  My disability was looked at as a condition to be overcome through medicine, science and adaptive devices.  I was not seen as a whole person who might do things differently, but who has the same desires, fears and questions that any teenage girl would have.

A critical first step in addressing the unmet needs of disabled people is to look at the work being done by the reproductive health, rights and justice movement and identify the missed opportunities.  We cannot advocate for comprehensive sex education if it does not include reference to the needs and acknowledgement of the sexuality of disabled people.  While many young people learn sexual knowledge from their peers, a study of disabled young people looked at how disabled youth have even less access to health education from peers because they may be socially isolated.

Disabled people are often seen as asexual, so discussing their needs in a school-based, sex education class can actually help to change that image and open up the opportunity for young, disabled people to feel better able to talk about their own fears and desires.  The fact is that communication skills are important to all young people as they try to create healthy relationships.  By encouraging people to consider the specific needs someone with a disability might have, we would be helping all young people to have an awareness of and begin to develop the language to navigate things like needs, consent and pleasure.

Ensuring inclusive information in the classroom is critical.  We also need to look at improved access to the services to manage and protect the sexual health of disabled people.  With the passage of the Affordable Care Act, there has been both renewed attention and some funding to support cultural competency in health care.  As part of these efforts, we should look at how to better train health professionals to consider the needs of disabled people.

Young able-bodied people may be asked by their doctors if they are sexually active or how many partners they have had, or they may have had condoms or birth control offered to them; while people with visible impairments may not receive the same questions or concerns due to assumptions about their sex life or desires. Further, some disabled people may have different needs in accessing these things if they are unable to bring them up out of shyness, embarrassment or because of language that assumes that disabled people would not need the same kind of information or support.

Disabled folks, just like other young people, should be counseled and educated about STI testing, resources on safer sex practices for all sexual identities including LGBTQ folks, birth control, and vaccinations against STIs beginning in adolescence.  Health professionals should also have resources or information about issues related to sex and disability.

But safe sex and contraception are not the only sexual and reproductive health needs of disabled people.  As we go through life, we ask the same questions of whether or not we would like or are ready to be parents.  We may need to seek abortion care.  We may want to become pregnant. Gynecologists should talk to disabled people about plans for pregnancy and families and any particular preconception needs we may have.   Many disabled people I have talked to expressed concerns and assumptions about their own ability to carry a pregnancy or raise children.  We should be able to seek out health professionals to help support us in finding the information we need to consider our parenting options, without encountering bias and fear-mongering because of assumptions others (yes even medical professionals) have about our ability to parent.

Expanding the way that we look at sex education and cultural competency in health care are just some of the ways that we can begin to meet the reproductive and sexual health needs of disabled people.  Taking these important first steps would show that while we don’t always get it right, we are a movement that is trying to represent and respect the voices, lives and experiences of all people.

Amber Melvin is the Programs and Policy Assistant at Reproductive Health Technologies Project and an URGE alum from California State University, Long Beach.

Going to College with a Disability

 

by Eva Sweeney, Hannah Langlie, Julie McGinnity and GimpGirl Community

Transitioning from adolescence to college (or university) life is scary at times for most students. However, being a college student with a disability definitely comes with its own unique challenges. This article explores many of the common pitfalls experienced by students, and how individuals successfully addressed these barriers.

Although high schools in some countries (such as the United States) are required to assist young adults with disabilities transitioning to a successful adulthood, many of these programs aren’t designed for a transition to college. These programs are often built around the false assumptions that disabled students are not going to attend college, or have aspirations beyond menial jobs and living at home (or in a group home). These programs are also staffed by adult, able-bodied professionals who do not have first-hand experience with living as a disabled person, and role models who have experience are rarely introduced.

As a high school student, these well-meaning programs can be a tremendously disempowering experience. Individual needs can get lost in a sea of bureaucracy and paperwork, and are often not addressed in meaningful ways. The system is not designed to give students all the tools needed to take charge of their lives and truly live independently.

Not surprisingly, in the United States only 53% of students with disabilities have completed a degree or vocational program, as opposed to 64% of their nondisabled peers (Cole, pg. 2). Students with disabilities don’t finish for many reasons, including lack of educational programs, not having access to funding, problems with coordinating support services like personal care attendants (PCAs) and medical care, unexpected medical complications, geographical access barriers like snow or long commutes, and physical access barriers like inaccessible classrooms or student housing.

We have put together a list of helpful tips for navigating the confusing landscape of college life. These tips are taken from our own experiences, as women with various disabilities, and should in no way be taken to represent all access needs. Eva attended a small, liberal arts college in Los Angeles. She uses a wheelchair to get around and speaks with a letter board since she is non-verbal. Hannah is currently a third-year college student in Seattle studying journalism. She uses a power chair most of the time and lives on campus. Julie is a master’s degree student studying music, and utilizes Braille and readers.

Balancing Academics and Practical Needs

Managing practical needs (such as personal care or navigating between classes) is critical to succeeding in college, so it is important to know what supports and accommodations are available. It is important to remember that every situation is a little different, depending on your personal needs and the college you choose. The quotes below relate each of our personal experiences.

Coordinating Disability Services

The vast majority of post-secondary schools (in the United States and other countries) have a disability services office that is suppose to coordinate all of the support services and accommodations needed by students to be successful. However, the responsiveness of the staff and quality of the services provided in each disability services office varies widely. We had very different experiences:

“My college’s disability services person was god awful. All my professors trusted me, so when I needed more time for tests, I just took the test in the cafeteria. I also couldn’t stay in the same room since my aide voiced what I’d be spelling out on my letter board and therefore, giving everyone my answers. My professors knew I wouldn’t cheat or copy the test for others. When I was done, I would just drop it off in their office. If I had used disability services, it would have been tons of unnecessary paperwork and time for each test. When I started each semester, I would email my professors and introduce myself. I would briefly explain cerebral palsy and that I would have an aide accompany me to class. I would also troubleshoot any potential issues. For example, my Human Anatomy class did a lot of work handling model bones. I can’t use my hands so instead, my professor would explain where certain bones are in my body. When I took painting, my professor was worried at first about how I would participate. But with an explanation and one or two classes, she quickly got it and I became one of her favorite students.” — Eva

“I choose to meet with each of my professors that I don’t already know before the quarter starts to go over my accommodations. Although I do use disability services, I don’t always use the accommodations for every class, I am able to customize them for what classes I need. Usually, a face-to-face meeting will help offset any anxiety that a professor might have. Because I use dictation software to write most of my papers and tests, I have a similar situation that I can’t be in the class with all of the other students, so sometimes I have to work this out, depending on what the test entails.” — Hannah

“I have always used disability services. Since I don’t have the time or energy to scan my books into accessible formats, I find them useful for this purpose. I have also worked with them to get Braille, which is very important to me. Since the college is obligated to pay for Braille, I prefer to go through them rather than trying to pay for it on my own. I try not to take tests through Disability Services though. It is much easier to arrange to take a test with a reader in a professor’s office or just take the test with the rest of the class.” — Julie

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