We interviewed Leslie Walker-Hirsch on her new book The Facts of Life...and More: Sexuality and Intimacy for People with Intellectual Disabilities. UNFORTUNATELY we had technical difficulties with the video recording but the audio recording is below. You can find more information about the author at her website here and purchase the book on amazon here. Also below is a transcript of the interview.
Hey Everyone, we are talking with Leslie Walker-Hirsch, she is the author of the book The Facts of Life...and More: Sexuality and Intimacy for People with Intellectual Disabilities. A very important topic, Leslie thanks so much for talking with us.
Thank you very much for inviting me, I'm happy to be here.
I guess I'd like to start with your background and why this topic is so important to examine?
Well, thats a really good beginning, my background is that I have a masters degree in Special Education and Administration so I am very aware of the needs that people have for unique learning materials and that people with intellectual disabilities really need to know everything that everybody else knows and can learn those things if they are presented in the right way and in a manner that is consistent with any of their learning idiosyncroses. And sexuality is a very hot topic and people are afraid of it because they really don't know what to do. Families are afraid they will tell their children the wrong thing or that tell their children nothing and their children will make some kind of an error that will cause them to be taken advantage of or be accused of taking advantage of others. Not because of any maliciousness but because they are ignorant of what to do.
Interesting. I know your book focuses on educating the educators, and i guess from your perspective, what ways are colleges and universities not preparing future support individuals like teachers, psychologists, social workers concerning these issues?
You know, I teach a course in the graduate school at the University of New Mexico and related to that course, with my department leaders, Ruth Luckasson and an associate Sun Su Park, we did an informal research about what courses are being offered on this subject around the country. And although part of this survey was was this important, everyone agreed that it was. And yet, this seemed to be the only course in the United State that was offering this training to special education teachers and PHD students in psychology and social work. So there's a void of information. And I think that partly explains why teachers in the classroom, in a public school, don't know what to do because they've never had any information on how to handle some of these subject. You know, in the schools now a days, kids with intellectual disabilities and developmental disabilities are included as to the extent that they can be. And so the health classes almost universally one that includes them and yet the other kids in the health class that are the typical kids have a whole different set of information and whole different set of needs about sexuality education. And so a lot of the information that's presented goes too fast, is not presented in a way that that uses a unique instructional materials that are pertinent to the kids who have intellectual disabilities and who don't learn it in a conventional way. And so the information goes right over their heads. You know, I had a student tell me she is not going to school anymore because she learned in her health class that teenagers drink, do drugs and have sex. And she's not ready for that. So they get little bits and pieces of information and don't always know how to put that together into their own lives to be meaningful.
And I guess, to take that educational type of perspective, how would we help parents with this issue?
Well you know, parents are the first and most important, and I emphasize, the most important sexuality educators of their children. And sex education really begins not in a classroom but as soon as that little child is born, whether they have a disability or not, whether they have brown eyes or blue eyes, brown skin or white skin. It all begins as soon as that child enters into the world. So the child observes the parent, how does the parent express affection to their child, how do they express affection to each other. Are they reserved, are they effusive, do they dance in the kitchen or does everybody give each other the silent treatment? How do they express anger to each other or disappointment with each other or the child? The child frequently will copy that. If there is physical violence in the family the child will copy that too. If there is genuine affection the child will experience that and be able to express that generosity of spirit to other kids. And become a more likely friend in the real world as they move into school and into adult life.
What is a common misperception about individuals with intellectual disabilities and sexuality and intimacy.
You know, ironically, there are two absolutely opposite misconceptions existing at the same time. On the one hand, people believe that people who have intellectual disabilities do not have sexuality, do not have sexual drives, do not need to have any information at all about sex because they are not likely to be sexually active with another person. And coexisting with that sorta innocent, eternal child belief will keep this person with a disability as a little girl or little child forever because actually they are. Except they aren't. So thats one myth which is totally untrue.
And on the opposite side, they think that people who have unusual physical appearance, or unusual learning styles or speech patterns, that those people are likely to have deviant sexuality which is not true at all either. In the scope of things, people with intellectual and developmental disabilities have the same range of interests and hormones that everyone else has.
How is supporting and educating individuals with intellectual disabilities age dependent and disability dependent?
You know, families are pretty well able to ignore sexuality at least until puberty. And then when puberty hits they really can't ignore it anymore. But there is a lot of water under the bridge by the time the child reaches puberty. In this day in age, according to the former health editor of the New York Times Jane Brody, puberty now starts as early as age six. Now thats two or more years earlier than puberty began when, well the earth was cooling and I was in puberty. So for people with intellectual disabilities, this creates a real difficulty in that biologically they are the same age as their peers, but emotionally, socially and experiencially they are maturing, generally speaking, at a slower rate than they are biologically, so the chasm between managing adult drives, adult hormones, adult hygiene, adult attractions, adult emotional experiences is even greater than it is for typical kids, who are already having that same difficulty because of the early onset of puberty these days.
You know, a lot of people say my child doesn't need sex education or sexuality education because my child has a disability and is not likely to have a partner, not likely to have children, is not likely to marry. However, people with intellectual disabilities are between 6 and 10 times more likely to experience sexual abuse in their lifetime than their same sex age peers. And while parents don't realize it, what makes a person a very good victim is not somebody who wears low cut clothes or dingle dangle earrings but its a person who is believed to be ignorant, a person who doesn't have a strong social support network of friends and family, a person who is socially isolated and desperate. So that that person will respond to just the smallest bit of attention and the smallest bit of acceptance that they get from a predator who is looking for a victim. So without information and with ignorance, a person becomes a much more likely victim for a predator that's is looking for one. And they are out there, we know that.
So, sexuality education, not just, you know, a reproductive education but sexuality for living. How to live in the world as an adult man or woman. And how to be responsible, and how to stay within the law, and how to stay safe is an important aspect of sexuality education especially for this group. And in the schools, I find that when they are included in the biology class they get a biological orientation to sexuality. In the health class, they get an orientation about staying healthy and preparation for marriage and family but none of those teachers are trained in special education to use special education techniques to teach this subject. And what is really important for this group is the social aspect of sexuality education. How do you express the fact that you like somebody? What does it mean to be a friend? What does it mean to go out on a date? How do you go out on a date? Who is a likely candidate for your romantic affections? Its not your teacher. Its not your mom. Its not your dad. And its certainly not the school bus driver. Now, the school bus driver is the most reported incident of sexual offenders, not that they are offenders but its the most frequently reported. We know that most offenses against kids with intellectual disabilities are not ever reported and nobody really really knows how many there are. I just heard on the news this morning out of Albuquerque, New Mexico, that a custodian at one of the schools has just been charged with soliciting sexual favors from a student at the school. This goes on and on and on. And sexuality education and recognizing social boundaries and differentiating the kinds of expectations you have in different kinds of relationships is really the area that our kids with intellectual disabilities need education and they also need training and extra time to practice, to be scripted, to know what to say. What do you say if someone says sex me something on your phone. What do you say, if somebody says to you if you send me a naked picture of you, I'll be your friend. I'll let you have lunch with me. What do you say when somebody says that, how does a student counter that. That's part of what sexuality education needs to be in the school not instead of health class but in addition to that. And parents have an important role in making friendships continue outside of the school. Because a student who has friends is a much less likely victim of a predator. I know that sounds a little odd but its the truth when you know that you are liked and loved and have something interesting to do every day. You are much less likely to be seduced by a predator.
At what age would you consider then that the education begins.
It begins as soon as the child is born. Not by sitting in a classroom at a table. But really by living and learning. How do you show mommy that you liked that cereal that you are having. And you teach the child to smile. And you smile back. Now I know that a lot kids with autism are much more difficult when it comes to asking them to follow what the parent is doing because they often look in a different direction or not as present as we would like a child to be. And so it becomes a little more difficult. But most of the time, kids want to please their parent. If the parent reacts positively when the child smiles, the child is more likely to smile more. And if the parent smiles back and the rest of the world smiles back they get that interchange and feedback. And that's really the beginning of sex education. If a child spills his orange juice and gets smacked on the hand for it, well that's sex education too and they learn that when someone does something you don't like you hit them and that's not what we want children to learn. And parents really have to practice what they want their children to learn. You know, in some families, modesty is an issue. Some families, people are more casual with their modesty. And other families everybody covers up all the way. And yet, when the child goes to school they are exposed for the first time to what every other family thinks is modesty. And so they have to really be prepared in that way that your kids will come home from school with learning things you never taught them because the kids sitting next to them taught them that. To learn to close the door to the bathroom is something that may seem obvious but since a lot of kids are later in toilet training skills parents often need to participate for a way longer time in that actual setting with their children. But to help the child understand that this is mom and mom and dad are the only people who are allowed to be with you. When they go to school to learn that when you use the toilet it needs to be private. And what does privacy mean. And to be able to ask for that if they don't have it.
Parents, on the other hand, need to allow their child to have a little privacy. To learn that not only does the child need to knock on the door so does the parent. And to get to develop that as an expectation of how you get privacy. And what things you're allowed to do when you are in private. Well, you're not allowed to wreck your room, you're not allowed to throw your toys all over the place. But you are allowed to explore your body and to see what feels good to you.
Well, I think its a very important topic for parents to learn more about. And I am going to put links to the book on Amazon on the website so people can find it. Do you have anything else to add, I know you are going around and giving some talks right now. But anything else to add?
Well, not at the moment. I will be out in West Chester, Pennsylvania this coming week and will have a chance to talk with the special education teachers in that school area and I'm very delighted to do that. I do travel and train school districts not only in sex education per se, but also how to use the Circles curriculum, which is a multimedia video curriculum that teaches social boundaries to students with developmental and intellectual disabilities and that are used very widely throughout the country.
We may have to have you back on to talk about that.
I can't wait, this was lovely.
Well thank you very much.
Thank you for having me, so long.