The Ultimate Guide to Sex and Disability

the guideThis 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.

Privacy

“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 Parents

In a parent focus group* on the topic of sexuality and their children with ASD several interesting themes emerged: parents struggle with what healthy sexuality looks like in their child with ASD, they feel their child’s social impairments make many sexuality topics difficult to understand, they feel the community does not understand the sexuality needs of their child, and they feel unprepared to support their child with their sexuality need.

Does that sound like you?

These researchers made several suggestions for parents.  Although they were focused on children with ASD, I think this would be applicable for almost all children.  I think they are also good things for professionals to keep in mind too!

1) Lean about sexuality and ASD as well as sexual development in general.

2) Think about your hopes and fears for your child.  Also think about your own experiences learning about sexuality.

3) Set goals for your child (and I would maybe modify, to the degree that they are able, with your child).

4) Think about the method to communicate these messages to your child.

5)  Coordinate with schools, physicians, ect.

I have found a book that may be useful called “Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders “.  You can get a pretty good preview on google books to make sure it is right for you.  I like it because it talks about ASD in general and then weaves in topics related to puberty.  It also thinks about changes from multiple domains.  For example, one suggestion was realizing your teen might need more control and finding ways to incorporate that into his or her daily life.

This tip sheet from the Better Health Channel may also be helpful: Sex education for children with intellectual disabilities – tips for parents – Better Health Channel

*Only a short preview of this article is available for free online.  Although the entire article is available for purchase it is written for an academic audience.