The Association of University Centers on Disabilities has created an incredible resource for self-advocates to gain sexual information and advice through a webinar series. The first episode of Sex Talk for Self-Advocates contains a panel of sexual educators answering questions about relationships and sexuality posed by self-advocates. Important questions such as “How do you know if someone is your boyfriend or girlfriend? What exactly does consent mean? How to be gay?” are discussed. The webinar series can be accessed through the AUCD website, linked below, or by going to AUCD network’s youtube channel. The presentation slides containing information from the video can also be found on the AUCD website. Sex Talk for Self Advocates is a great free resource that contains informed speakers and spreads sexual education to a diverse group of individuals.
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.
Shirley Paceley is based out of Blue Tower Training in Decatur, Illinois. She has been working with individuals with developmental disabilities for over 30 years and has specific expertise in abuse prevention and intervention. She is available to do trainings and consultations.
Check out this online store for books and resources developed by Shirley and others for teaching about sexuality and sexual abuse prevention.
Thank you to Kelli at the Developmental Services Center for sending out this information! Over the past three years, three laws have been passed that improve public policy with the goal of increasing access to services for women with disabilities who experience sexual violence:
P.A. 96-318, eff. Jan. 1, 2010- Consent of a guardian, health care surrogate or health care power of attorney is not required in order for a victim with a disability to receive health care or release forensic evidence following a sexual assault.
If a victim with a disability is unable to consent to the release of evidence, and the victim’s guardian, health care surrogate or health care power of attorney is unavailable or unwilling to release the information, an investigating law enforcement officer may release the evidence.
P.A. 96-1010, eff. Jan 1, 2011- An adult with a guardian can:
- decide whether his or her guardian can look at her/his rape crisis center records; and
- decide whether or not to waive the rape crisis center privilege.
P.A. 97-165, eff. Jan. 1, 2012- An adult with a guardian can attend up to five, forty-five minute counseling sessions without the consent of, or notice to, the guardian unless the counselor or therapist believes such disclosure is necessary.
Click the link below to download fact sheets created for advocates and self-advocates
These fact sheets are a product of the Illinois Imagines Project, a collaborative among the Illinois Department of Human Services, the Illinois Coalition Against Sexual Assault, and self-advocates for people with disabilities.
Thank you to these groups who not only created these facts sheets but also advocated for these protections!
A workshop participant put me in touch with this awesome resource (thanks Cate!). Impact is a newsletter from the University of Minnesota’s Institute on Community Integration which is part of their Center for Excellence in Developmental Disabilities. They have many products and services that you may find useful (many of which are available online or at little cost). Their newsletters contain ” strategies, research, and success stories in specific focus areas related to persons with intellectual, developmental, and other disabilities. ”
The sexuality issue has several interesting articles written by individuals with disabilities, service providers, family, and community members. In addition to the articles, the newsletter provides information about additional resources in several areas: education, parent support, advocacy, sexual health, and sexual safety.
The story in Impact that touched me the most was one about two men who were harshly punished for their love for one another while institutionalized but were finally able to be married. Once they were both living in group homes and reunited…”they decided they would not live together, they would not have sex, until they were married. They had been punished so often, told continuously that they were dirty, sinful, hateful creatures, that they needed to get married ‘liked other people.'” Dave Hingsburger* commented “How we hate the hearts of people with disabilities! We have caged their bodies, disfigured their genitals, drugged their thoughts. But we have never, ever captured their hearts or controlled their spirits.”
*The link in the text is to Dave Hingsburger’s blog. He is the author of several resources for teaching human sexuality and abuse prevention to individuals with intellectual and developmental disabilities. The resources can be found at Diverse City Press.
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?”
Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.
They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material. I’ve also included links to the slides- this is a direct link, you don’t need to register.
Slides: “Sex is when people use their bodies together to share love and pleasure.”
Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”
And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet- “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”
In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships. These include general information as well as parent tips.
I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.
I just wanted to link to one other power point presentation that I thought had a lot of good information. “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School
It is difficult to determine the exact risk of sexual abuse for individuals with ASD (it’s hard to get a good report of sexual abuse among the general population). The first national survey reports victimization rates of 27% for women and 16% of men among the general population (Finkelhor et al., 1990). A study has shown that children with disabilities are 1.7 times more likely to experience sexual abuse however all children with disabilities were examined, not just individuals with ASD (Crosse, Kaye & Ratnofsky, 1993). Individuals who are caregiver dependent may be at the highest risk because family members, family acquaintances, and paid caregivers are the most likely to commit sexual abuse (Mansell et al., 1996). Difficulties communicating, lack of knowledge of sexual norms and activities, and isolation may contribute to increased risk of sexual abuse among individuals with ASD. Sexuality education may provide opportunities to for individuals to be better able to communicate and better understand social norms and activities. Furthermore if the support systems of individuals with ASD are in openly talking about sexuality it may create a climate where this abuse is less likely to happen. The Department of Human Services in Illinois has started a project to end sexual violence against women with disabilities. I’ve gotten to meet several people working on the project and they are very knowledgeable and dedicated. I hope they succeed!
What does supporting people with disabilities with BEING sexuality educators?
It’s all about self-advocacy!
According to SDC (UIC’s Institute on Disability and Human Development and their Sexuality and Disability Consortium (SDC), “Sexual Self-Advocacy means: People with disabilities taking control of their own sexuality by making their own decisions and speaking up for themselves and others about sexuality.”
As sexuality educators, individuals with disabilities can be…
- Safe people for their friends to talk to
- Knowledgeable sources of information
- Leaders and co-leaders in educational sessions
- Models of healthy sexual relationships
- Advocates for raising awareness about sexuality topics
- Fill in the blank ____________
This is a great webinar to learn more about how to advance sexual self-advocacy for people with disabilities.
Another great resource for learning more about sexual self-advocacy is The Green Mountain Self-Advocates. They have developed materials for self-advocates interested in teach human sexuality (as well as many other topics).
SDC recommends the Developmental Disabilities and Sexuality Curriculum which has a self-advocacy component built in.
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”