I recently did a presentation at the Illinois Council on Family Relations (ILCFR). I thought I’d share that presentation with you. I hope you find it useful. It’s about the framework I’ve used to design this website. The framework is based on the one that was published in the Journal of Family Relations by Hughes, Bowers, Thomann Mitchell, Curtiss (me), and Ebata. Feel free to contact me if you would like more information on developing an online program. The link takes you to the presentation in an interactive format or you can view it as a pdf: Interactive or PDF.
It can be a little overwhelming to start thinking about communicating pictorially about human sexuality topics, but there are some supports available.
Many of you already use Board Maker (computer software that helps make visual supports and PECS). They have a “Communicating About Sexuality” add on that is very useful and only costs $15.00 (but you have to already have Board Maker).
If you would like some guidelines on how to approach augmentative and alternative communication (AAC) in regards to sexuality Speak Up has resources that you may find useful. Speak Up is a group dedicated to preventing sexual abuse/victimization among people who use alternative communication. They have guidelines, suggestions for communication displays, and information about building sexual vocabulary. This group surveyed individuals who use AAC and found that ACC users say they need:
- People who recognize that they are sexual
- Information about sexuality
- Vocabulary to communicate about sexuality
- People to communicate with about sexuality
- Accessible resources and services
Sounds pretty darn reasonable to me.
Individuals with physical, cognitive, or emotional disabilities have a right to education about sexuality, sexual health care, and opportunities for socializing and sexual expression. Healthcare workers and other caregivers must receive comprehensive sexuality education, as well as training in understanding and supporting sexual development, behavior, and related healthcare for individuals with disabilities. The policies and procedures of social agencies and healthcare delivery systems should ensure that services and benefits are provided to all persons without discrimination because of disability.
Human sexuality encompasses the sexual knowledge, beliefs, attitudes, values, and behaviors of individuals. Its various dimensions involve the anatomy, physiology, and biochemistry of the sexual response system; identity, orientation, roles, and personality; and thoughts, feelings, and relationships. Sexuality is influenced by ethical, spiritual, cultural, and moral concerns. All persons are sexual, in the broadest sense of the word.
From Sexuality Information & Education Council of the US, www.siecus.org
Teaching human sexuality is about formal lessons, selecting information, and choosing how to teach it, but it’s more than that. To be a sexuality educator you have to see the whole person and be committed to support that person. It’s not easy, it won’t be prefect, and you might make mistakes. But it’s not impossible either and you have lots of tools.
To me, it’s about asking “why not?”. Why not teach someone about different sexual positions? Why not incorporate questions about sexual life into annual planning meetings? Why not teach someone how to ask someone else on a date? Why not affirm someone when they are expressing their sexuality? Sometimes there are good answers to these questions but a lot of times there just aren’t. Being a sexuality educator is about being an advocate. It’s about giving people information in an engaging way they can digest. It’s about teaching skills and changing patterns of behavior. It’s about sending the message that there is nothing fundamentally wrong with who you are. I really appreciate people taking time to read this blog because I think the work you do is really important. Thank you!
This book by Miriam Kaufman, Cory Silverberg, and Fran Odette is eye opening. It’s written by people with disabilities for people with disabilities and focuses on the joys of sexual intimacy. As a typically developing person, it challenged a lot of my assumptions about sex and made me think about new things. Chapters include: Myths About Disability and Sex; Desire and Self-Esteem; Sexual Anatomy and Sexual Response; Communication; Sex with Ourselves; Sex with Others; Oral Sex, Penetration and Positioning; Sex Toys, Books, and Videos; Yoga and Tantric Sex; S/M; Sexual Health; Sexual Violence and Sexuality; Resources; and Glossary of Gender and Sex Terms. I want to share two passages with you.
Sex and Spontaneity
“We’re taught that sex is suppose to be spontaneous, something that just comes naturally (like ‘true love’). This belief is damaging to everyone, but is a real problem for people living with disabilities, because any amount of planning makes sex not spontaneous. Believing in this myth pretty much ensures a lously sex life.
While sex has many meanings, at its heart sex is a process of communication. Whether we are flirting from across a crowded room, giving someone head for the first time, or making love while listening to a piece of music that totally turns us on, being sexual is being in contact with ourselves and our surroundings. The idea that this process can happen without thinking, talking, or planning is ridiculous.
Maybe we are willing to buy into the myth of sexual spontaneity because talking about our desires is difficult. It’s risky, and makes us feel exposed and vulnerable, and often vulnerability is equated with weakness.”
This made me think a lot about the way I teach reproduction and sexual intimacy. I tend to focus a lot sexual behavior, but not as much on the planning and communication that comprises that behavior. Also, I do a lot of role playing, planning out what you’re going to say in advance, and scripting. I’ve never really done that around negotiating intimacy.
“If we were taught anything about sex at all when we were younger, many of us learned that sex was something private, inappropriate to talk about or do in front of others. Privacy becomes a requirement for sexuality.
From someone living in an institution, or using attendant services, or needing the assistance of someone else to facilitate communication, privacy is a completely different reality. The definition of privacy changes when you have no lock on your door, or when you request private time at a specific hours knowing that it will probably be written down in a log-book. This myth is one of those ‘no-win situations,’ because we’re told that real sex is a private matter and, guess what, you can’t have that kind of privacy.”
This passage really challenged me to think about how I teach privacy and how I teach about relationship types. I think sometimes I might ignore that what a lot of people think of as privacy and the individual I am working with reality of privacy are two disparate things.
I do wish this book focused a little more on people with intellectual disability and was written at lower reading level. I do think people with ID/DD could read it with support, especially sections. Much of the book is testimonies by people with disabilities and I think these passages could be great teaching tools. There are also suggested exercises- one of the exercises was about looking at your body. I teach antimony all the time, but I don’t think I’ve ever said, “when you’re at home, alone in your bedroom, look at and feel your body and check out the parts we’ve been talking about, you can even use a mirror.”
For those you how enjoy following blogs, and especially for those of you who enjoy blogs that feature individuals with disabilities, and particularly if you would like to read more about disability and sexuality- this blog is for you.
Dave Hingsburger is behind many of the resources from Diverse City Press such as Handmade Love/Finger Tips (masturbation education), No How (abuse prevention), and Undercover Dick (condom use). He also has written several books such as The Key (supporting individuals with disabilities who are also sexual offenders), R: The R Word (bullying self-advocacy), and Just Say Know (victimization). This is not an exhaustive list, but it gives you an idea.
There are many different ways to make visuals: cut and paste from magazines, jot down words and images, use Boardmaker, use power point…
For each method there are different pros and cons and a lot can be said for something that’s just plain easy to use. I also don’t think there’s anything wrong with a visual that has been made quickly- if it gets the message across, it doesn’t have to look nice.
But sometimes it is important for for a visual to be ascetically pleasing- and I wanted to share a free tool that’s available for making infographics (what marketers and advertisers call visual supports). It’s not particularly easy to use and it takes more time, but in the end you have a nice looking product. I would use this I wanted to make something I could use over and over (it’s worth the time) or if I was working with someone who thinks my regular visuals are “babyish”. You have to be careful about resisting the temptation to over clutter. There are several different generators, but for no cost, this one has the most flexibility and is relatively easy to use. http://www.easel.ly/
This visual goes along with the “What Should I do?” exercise we did during the workshop. You can download this visual as a PDF.
I know a lot of you already do a lot of lesson planning, but when you’re new, it can be a little difficult figuring out where to start. Here are step by step instructions for lesson planning as well as a lesson plan template. To see examples of some of my lesson plans click here, here, or here. You may not need to be so structured every time, but it helps in the beginning. It also good to have a series of documents that you revise so you’re not re-inventing the wheel every time.
What do I want to make sure that I have time to talk about? What are the most important issues for me to cover?
Step 2: Audience
Who is my audience? What adaptations will they need? How long is their attention span per activity? Will I need to adjust the room?
Step 3: Goals & Objectives
What are my objectives? What do I hope participants will learn? (More than two or three goals and objectives may be unreasonable)
Step 4: Lesson Plan
Write the outline for your presentation and allot estimated time to each segment. Consider potential activates: focus writing, videos, lectures, questionnaires, stem sentences, drawing/art, responding to pictures, matching, sequencing, pro/con lists, continuums, attitude assessments, ice breakers, guided imagery, journals, role plays, case studies, stories/media, brainstorming, creating teaching materials, building models, myth/fact sheets, self assessments, thought bubbles and small groups (this is not an exhaustive list). Whatever you choose (1) make sure there is some variation (2) build your activities from more structured to less structured, (3) warm up your participants for sensitive topics, (4) and allow for participation through multiple modalities. You will probably run out of time so schedule the least important things last or know exactly what time you have to cut earlier activities off. It’s good to either over plan or have a few tricks up your sleeve in case one of your activities bomb or you run out of time.
Step 5: Practice and Coordinate
Practice and, if working with a partner, delegate facilitation responsibilities. Is the time frame realistic? Do I understand each activity? What can I cut if necessary?
Step 6: Materials
Gather any materials you will need. This list would include handouts, visual aids, flip chart, materials you’ve developed, ect.
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!
I had a blast in Carbondale (thank you all)! People really responded to the time we spent thinking about how to explain concepts like arousal and orgasm. In the anatomy lesson of the curriculum we’ve been did this summer, I have similar explanations for explaining the reproductive parts of the body. I’m going to include the entire list here, but if the entire list is too overwhelming for your students choose 3-5 physiological parts to focus on per gender. I would recommend reading over the full WEB MD definitions of these terms (click here for the worksheet Body Part Functions)- you may come up with better explanations!
Some general ideas I try to convey…
- Some people’s reproductive organs are mostly inside the body and some people’s are mostly outside the body.
- Reproductive organs are a system of tubes, canals, and storage centers that connect to one another.
- Reproductive organs produce genetic information and try to bring it together.
Vulva: A part of a person’s body that is used for reproduction, urination, and pleasure. The vulva is outside the body. Every vulva looks a little bit different, but they all have folds of skin, openings into the body, and a clitoris. During puberty, the folds of skin become covered in hair.
Labia majora: Skin that protects the vulva
Labia minora: Skin that protects the opening to the vagina
Clitoris: Skin and nerves that cause pleasure
Vagina (birth canal): The vagina is used for reproduction and pleasure. During reproduction, the job of the vagina is to connect the uterus to the outside world. When a baby is born, the vagina squeezes in a special way to help the baby out of the uterus. When being used for pleasure, the vagina can be touched to make the body feel good.
Uterus: Where a baby grows
Ovaries: Holds the eggs (which hold genetic information)
Fallopian Tubes: Connects the ovaries and the uterus
Penis: A part of a person’s body that is used for reproduction, urination, and pleasure. The penis is outside the body. Every penis is a little bit different but they all are shaped like tubes with a small hole at the end.
Scrotum: A tissue sack that holds the testes. During puberty it gets covered with hair.
Testicles (testes): Produces sperm (genetic information)
Epidermis: Where sperm mature
Vas deferens: Brings sperm to the urethra
Ejaculatory ducts: a connector.
Urethra: carries urine and semen out of the body
Seminal Vesicles & Prostate Gland: Produce sperm energy
Bulbourethral gland (Cowper’s glands): Produces lubricant (makes things slippery)
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.
This may be more difficult than it appears at first. I like to communicate and teach broad and complex ideas about what sex is, but this can be really difficult for folks to grasp at first. I usually start out talking about reproduction because it’s a little more concrete and then move into sex more generally once reproductive intercourse, erection, ejaculation, and arousal have been covered. So lets start with those (and I’ll toss in a couple other concepts that may be difficult to explain). These are how I explain these concepts, but a curriculum you use may have other suggestions you find helpful. I used board maker pictures here, but real pictures would also be appropriate in many cases.
*You could substitute genitals, vulva, or penis for private area to be more concrete. Sometimes with middle school students I say “you know where” to be intentionally more vague- but only if I’m confident they do know where.
Sometimes I add, the blood fills up the spongy tissue of the penis, but other times I omit the blood part and just say the penis gets harder and bigger. This would depend on the level of complexity the individual can handle.
Ejaculation/Orgasm: “You have sexy feelings, your body feels really good, and you get so excited that you have an orgasm- a big burst of sensation*.” If they have a penis, I add “then fluid comes out of the penis.” If they have a vulva, I add “then some fluid may come out of the vagina”. If they ask what kind of fluid you could add, “a sticky milky fluid” and then if they have a penis, “with sperm in it.”
*If sensation is an inappropriate word you could replace it with feelings.
Reproductive Intercourse: “When a person put their penis in another person’s vagina and releases sperm, ejaculates. If the sperm meets with an egg then the person might get pregnant. A baby might grow inside the uterus.”
As students are first learning I do call this sex but once they have this I build that sex is bigger than just one act. It is heteronormative* to present reproductive intercourse as if it was sex. It could make students who are not interested in vaginal intercourse feel as if their form of sexual expression is less valid. At the same time, the students that I work with are often overwhelmed by all the new information and have difficulty navigating all the nuances. When I call this form of sex, “sex”, I do match it with vaginal sex, reproductive intercourse, or intercourse to allude to the idea that there are other forms of sex.
*If you’re not familiar with the term heteronormative, it refers to when heterosexuality is used as the default. It also refers to other lifestyles that are considered the default. For example, a heteronormative definition of family would be if you used, implicitly or explicitly, a husband, a wife, and children as the definition of family.
Wet Dream: “Sometimes when you’re sleeping you have have sexy feelings. These feelings can be so good that you may get really excited in your sleep. You may feel so good that fluid comes out of your body.”
If they know erection and ejaculation, you can use those words too but I try to limit my use of those words if I’m not confident they have a full conception of the terms.
People with vulvas can have wet dreams too! Regardless of whether there is ejaculation, having organisms and arousal during sleep can be scary. It is an important thing to prepare children for as their bodies change with puberty.
Sex: “Sex is when two people have sexy feelings they want to share with each other so they touch each other’s private parts to make each other feel good.” You can expand it further, “A person might put their penis inside a person’s vagina. Sometimes people kiss and lick each other’s vulva or penis. A person might put their penis inside a person’s anus*.” If they ask why someone has sex, I would answer “Either because they want to have a baby, because they love each other and they want to share those feelings, or because they want to have fun.”
*I would use butthole if I thought that was a word the person understood better. In this definition, I’ve defined sex as anal, vaginal, or oral intercourse.
Sperm/Egg: The cells inside a persons body that have genetic information.
Not all folks will grasp the concept of genetic information but they will probably know that it means scientific or medical information.
Next week, well be covering reproduction in Human Sexuality 101 so look check out the curriculum for that section for more information.
In preparing for the puberty section of Human Sexuality 101 I was looking at research on methods for teaching young girls with ASD about menstruation and came across an article using Social Stories (only a preview of the article is available for free).
In short, here’s the Four P Plan for Period Support
1. Prepare a period kit
2. Preinstruct (perhaps using social stories)
4. Plan for pain relief
Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls). They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing up, what a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad. They reviewed the social stories over several days and completed simulations over several days. They also used different types of menstrual pads in case the girls did not always have access to the same type. They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”). This method proved effective in these case studies and the parents who implemented the plans where happy with it.
I have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11. In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school! This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.
I have heard that some families also preemptively use pain relief to support with discomfort and PMS. Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period. This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.