Sexual Education is known to be a vital part of education that many people with disabilities do not receive. The National Council on Independent Living (NCIL) developed an excellent series of youtube videos aimed to help close this gap. The sex ed for individuals with I/DD project is a 10 part video series that can be seen on youtube. The project contains videos that discuss a range of important sexual information from healthy relationships and consent to how to use a condom. The videos also contain self advocates. Understanding that individuals with disabilities are sexual beings and informing such individuals on all sexual topics is extremely important. The NCIL’s video series is an amazing resource. Linked below is the introduction video to the series. The videos can also be accessed though the Nation Council on Independent Living youtube channel.
In a world of increasing accessibility, more and more clothing brands have begun producing products with accessible modifications. Unfortunately, undergarments and lingerie are important categories often forgotten. Individuals with disabilities are sexual beings and have the right to feel confident in their own bodies just as able-bodied individuals, and accessible underwear is a major factor in this.
In order to shine a light on these hidden categories, it is important to understand what accessible undergarments aim to do. Accessible underwear provides clothing that can be used by individuals with disabilities; Understanding that not everyone can use common closures or typical underwear styles. Accessible lingerie is also a growing category.
Slick Chicks, a growing adaptive underwear business, is a prime example of a company combatting this issue and empowering individuals with disabilities. The company sells a variety of accessible underwear and includes many images and videos to show just how easy it is to use their garments. They are specialized for women who may be in wheelchairs or have limited mobility but can be used to improve the accessibility of underwear for many individuals.
Another excellent resource is Devovere, an Etsy shop, aiming to provide lingerie that is made for you. Through custom orders an individual can request front-facing closures or adjusters, velcro closings rather than clips or buttons, extra fastenings, and more for no extra price. The owner of the company identifies as disabled and has set out to make inclusive clothing.
Sexuality and Disability is a free blog dedicated to providing a resource for women with disabilities. The blog answers questions pertaining to sex, the body, relationships, and more in a safe and open discussion. The welcome statement of the website encompasses this;
“Our site starts with the premise that people with disabilities are sexual beings – just like anyone else. sexualityanddisability.org is constructed as a bunch of questions a woman with a disability might have – about her body, about the mechanics and dynamics of having sex, about the complexities of being in an intimate relationship or having children, about unvoiced fears or experiences of encountering abuse in some form.”
Sexuality and Disability also includes an award-winning section that appeals to many individuals with disabilities that contains stories from the point of view of an individual with a disability and gives an in depth and realistic view on sexual topics.
I think you are going to love this movie. It’s beautiful, emotional, and honest. I could easily see this being used in a human sexuality classroom to help discuss parenting, consent, and support from families. It follows the story of a young couple who are faced in a situation many young couples find themselves in, an unexpected pregnancy. Like many young couples, the response of their families is shock and disappointment and this makes it difficult to determine their own feelings, hopes, and wants.
There was one statistic that was mentioned in the film that I had not heard before. It said that a women with Down Syndrome has a 50% chance of having a child with Down Syndrome. I did a little digging to see if I could find out more and received some help from The Tech Geneticist a project from the University of Stanford which seeks to increase the public understanding of genetics. About half of the eggs of a women with Down Syndrome will have an extra 21st chromosome (similar to what is described in this post http://genetics.thetech.org/ask/ask296). Her actual chance of having a child with Down Syndrome is less than 50% because fetuses with extra 21st chromosomes are at increased risk of complications. According to the National Down Syndrome Society only about 50% of women with Down Syndrome are fertile (ovulate).
It’s trickier when it comes to thinking about the father. Much less is known about the heritability (chance of passing a genetic trait on) of Down Syndrome for men with Down Syndrome, but it may be that their sperm that carry two 21st chromosomes would be less viable than their sperm that only have one. Both the Tech Geneticist and the National Down Syndrome Society suggested men with Down Syndrome seem to have much lower fertility rates than their same age peers with two 21st chromosomes.
The 1 hour and 13 minute movie, Autism in Love, is about falling in love, wanting to fall in love, the struggle of understanding love, and heartbreak. More than that, this movie is about what it means to be autistic, how love shapes identity, and the support of family. There are multiple viewing options but it is currently airing for free on Independent Lens. It follows the stories of four individuals on the autism spectrum as they navigate issues of love and relationships.
Here is a guide for using the film as a teaching tool: Autism in Love Viewing Guide
This movie is more geared toward adults as the youngest person featured in the film is in his early 20s and much of the film centers on marriage. If you were working with older teens, you may want to focus on Lenny.
YouTube has a lost of great sexuality education resources but it can be hard to find among all of the “not safe for work” content. Here’s a few channels and videos that might be useful. One of the most difficult tasks sex educators report is explaining intimate acts. This can be uncomfortable and difficult so I’ve tried to focus on these difficult to teach topics. The videos may not be the best fit for the person/people you’re working with, but they can give you an idea where to start. The channels also have great resources for expanding your own education on sexuality topics.
The Center for Sexual Pleasure and Health (CSPH) has a lot of great videos. Is one of my favorite cites. In addition to having direct information they also have videos for parents (“Use Your Words” videos).
Healthchannel is a YouTube channel with short videos on a variety of health care issues including sexual health resources including a few I’ve listed below. The videos aren’t prefect. They don’t feature animations with people with disabilities and focus on heterosexual couples, but they give very precise, clear information.
Sexplanations is another YouTube channel. They have mini episodes on human sexuality topics from shared sexual behavior to STDs to anatomy. Again the videos aren’t perfect. They move a little too quickly than I would like, but I’ve selected a few I think could be helpful. They could also be good to expand your own understanding of various topics.
It was really fun teaching about gender roles. Gender roles and gender identity were difficult concepts. Most of the people in the group talked about wearing a dress as if it made you a women. So we talked a lot about biology and society and how those both influence people and gender. We also talked a lot about gender stereotypes and how they can put limits on how people act.
Our big activity this week was making gender stereotype collages. We found images from magazines that we thought reflected gender stereotypes and made them into a collage. We talked about which stereotypes were easy to break and which ones were hard to escape. The men found a lot of images they thought were more realistic depictions of women. In the future, I think it could be fun to structure that into the activity.
Throughout the entire session, one of the things that was really difficult is that there are gender roles, gender stereotypes, and gender identities. They influence each other but they’re different. It’s not so critical that folks in the class understand the precise definitions, but it might have been helpful to walk through that a little bit more concretely. On the other hand it led to really nice discussion questions, for example one participant asked “What makes a person their gender?”
We used a couple videos in class. The first video focused on gender identity. It shows person in the process of gender reassignment. Over the three year period you can see how their external appearance reflects gender identity more and more.
The second video is more about gender stereotypes and gender roles. One of our participants brought up how boys don’t like to play with “girl toys” and I remembered having seen this and pulled it up (it’s nice when it works out like that!).
If you want to take a stab at teaching this on your own, hear are the materials we used.
Songs for Your Body is a curriculum comprised of, you guessed it, songs. They cover hygiene, abuse, masturbation, contraception, sexually transmitted infections, and sexual health. You can preview the songs on their website- I liked the masturbation songs. In general, they’re a little hokey but I think it’s a good example of thinking outside the box. The CD is $15.41 including shipping and handling and comes with a booklet of lyrics and activities.
I came across this looking for educational resources for teaching about puberty. It is not specifically designed for students with intellectual and/or developmental disabilities but is very well done and could serve as a basis for instruction. It’s available to stream free on YouTube and I’ve posted it here. You can also find it available for purchase if you would prefer a DVD.
This is the puberty episode…
The series also has a reproduction episode but it’s presented with the baby as a “body snatcher” which I think would be very confusing.
In the crushes unit of Human Sexuality 101 for middle school, we used this video on handling a crush. We were talking about this during The Birds and the Bees workshop in Champaign today and it reminded me that I should probably highlight this resource on its own.
The How to be in Middle School series covers topics such as how to invite someone to a dance, how to go to a dance, first kiss, handling kissing games, and many more topics (including less relationshipy videos like how to clean your room quickly). The videos present clear rules and how to guides. We planned an activity around the rules in our group.
There are many videos out there that are excellent for instruction and also for expanding your personal understanding of sexuality topics. I have a few on my resource list but wanted review a couple that are available. Click on the link to be taken to the page where it can be purchased. I’ve included previews and prices (you can get the videos cheaper for personal use- these are the instructional prices).
Is Love Enough? Is a documentary about parenting with disabilities. It’s $195.00
Monica and David is a documentary about a couple with Down Syndrome. $200 (but sometimes is on sale for $100).
The Kiss is a 52 second video featuring two actors with Down Syndrome. It is short and poignant.
Bumblebees is a short video made by an individual with autism following his first date.
Despite being told as a child he would never speak or walk, Vance accomplished what doctors thought was impossible. But now he has a new challenge: dating.
Made for the 48 Hour Disability Film Challenge.
Genre – Romantic Comedy
Setting – Living room / park
Elements – Comb / balloon
Theme – A reunion
When I see “Sexuality and the Arts” on the SIECUS topics list, I admit, I can get a little overwhelmed with trying to explore this topic in a way that is relevant to individuals with intellectual and developmental disabilities. But I think the Sprout Movie festival is a great place to start. Here is one of their Poetic Shorts, “How do I know?”
ABC just did an article about teaching human sexuality to students with intellectual disability. They focus on a New York school that has incorporated teaching sexuality into their mission. One of my favorite lines from the article is that “Sex ed is not a goal, but a process.” They mention in the article that New York City schools mandate sexuality education and I just wanted to comment on this, based on my experience in Illinois.
Although there is not specific information that addresses the willingness of school administrations to offer comprehensive sexuality education to individuals with ASD, there is information available for offering this type of education in general. As part of the Affordable Health Care Act federal funding was opened up for comprehensive sexuality education called PREP- Personal Responsibility Education Program as well as Title V- abstinence only education meaning that states get to choose the type of sexuality education offered and may offer both (SIECUS, n.d.). For fiscal year 2010, 43 states applied for PREP funding which means their sexuality education must cover abstinence, contraception use, healthy relationships, adolescent development, finical responsibility, educational and career success, and healthy life. Until PREP funding was aproved funding was only available for Title V abstinence only education.
Even if comprehensive sexuality education is being offered in the schools, that does not mean it is being offered to individuals with disabilities. Under the Individuals with Disabilities Education Act, students with Individual Education Plans have access to adapted general education curriculum. At this point, my understanding is that, in Illinois this means a student can participate in a general education sexuality class room unsupported, with an aide, or opt out. If the student (or more accurately, the student’s guardian), opts out, then the child’s special educator is required to adapt the curriculum with parental permission. There are no standards for what that adaptation must cover. Teachers may be working with professionally developed curriculum for individuals with disabilities, independently adapting a general education curriculum, or may be creating their own curriculum from scratch. Due to the diverse needs and strengths among individuals with students with disabilities there may be great variability in how long it takes to cover various topics, to what depth topics can be covered, and what further adaptations may be needed.
During the workshop we talk a little bit about gender identity and gender fluidity but I thought it might make sense to talk about this topic more in depth. Parks, Hall, and Taylor* looked at gender dysphoria (discontent with with biological sex) with individuals with cognitive disabilities and suggest “Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person’s family and social network, perhaps more so with people with intellectual disability, who may be more dependent on family and paid caregivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.” But there is still very little information about how common it is, why for some individuals gender is more fluid (have a wide flexible range of gender expression), and how best to support individuals with disabilities with issues related to gender. This topic also raises issues related to guardianship and self determination. Some individuals start going on puberty suppressants and hormone replacement starting in adolescence so their bodies can match the gender they express and the gender they identify with. For people with disabilities, who gets to make that choice?
Could having a developmental disability lead to difficulties with gender identity?
This is a little difficult to answer. There are very few studies ask this question. In Holland they looked at co-morbidity of ASD and gender disorders * and did find more individuals with ASD coming to their clinic then you would expect. However individuals with ASD may be tapped into to services which might account for this difference. When individuals with disabilities seek support they may be unable to give an accurate history and professionals in this area may be unfamiliar with working with people with disabilities which could lead to false impressions.
Given how little is known, where can I go for more information?
There are new clinical guidelines that address how clinicians should assess and support individuals with autism and persistent gender dysphoria. The new clinical guidelines (there haven’t been any in the past) affirm the right of individuals with autism to obtain gender realignment. It also affirms that many individuals with autism experience gender outside the male-female binary. Check out a reader friendly overview of the guidelines on Spectrum News.
Gender Spectrum is a great place to start looking for more information. This is a website that can link families with medical, mental health, social, and legal services. The have great definitions of all the different terminology and a great overview of gender development.
Here is also a This American Life podcast that features interviews with two little girls who were born as biological males and their families. For me, it was really eye opening and helped me connect this topic to real people.
On May 19th the Washington Post published an article on this topic (which I thought was really well done) featuring a little boy named Tyler. The story had almost 2,500 comments 5 days later. They published a follow up article about the response on May 21st, “I heard from transgendered senior citizens who lamented their decades living a lie. I got e-mails from confused parents who had their aha moment when they read Tyler’s story. And sure, I heard from the haters”. This article not only has nice information but also speaks to the relevance and controversy surrounding this topic.
*This links to the abstract of the article. Unfortunately, the full text of the article is not available for free online.
This video was filmed at the Healthy Relationships and Sexuality Conference in California 2010. What’s special about this conference is that it was organized by people with disabilities (and their allies) for people with disabilities.
I’ve highlighted some of my favorite quotes from the video. My main point in posting it, is not so much that you watch it and learn a bunch of facts, but rather use as an example of a teaching tool. Creating a video like this is a wonderful learning experience and helps give purpose and permanence to the expression of ideas.
“Sexuality needs to be part of the service planning process” – “It’s not the people with disabilities who are uncomfortable but the staff who are helping support them” – ” “The definition of support needs to change as the person changes” – “A person with a disability can always find love” – “Disability does not define me. The way I think about other people and the way I treat other people: that’s what defines me” – “Maybe people will eventually become more open to us” – “If you get asked a frank question, give a frank answer”
I had a great time in Rockford at The Birds and the Bees workshop. I always feel like I learn so much each time I do a workshop. I got to meet a lot of interesting folks and I hope people walked away with a few things to think about. One thing that people asked for was some video showing what education might actually look like. I haven’t been able to find a great video yet, but I did find a web series that is really interesting called “The Specials”. It is made in the UK and follows five young adults as they transition out of school and into a group home. It is really interesting and touches on topics of sexuality. Worth checking out. http://www.the-specials.com/episodes
Unfortunately- the website just has excerpts from the show and the DVDs aren’t available for purchase yet in the US. The excerpts are rather long and sometimes the full ones pop up on You Tube so keep an eye out.