[00:00:00] Speaker A: Foreign welcome to Disability Empowerment now season four. I'm your host, Keith Murphy diconsini. Today I'm talking to Hannah Wilke, a sexual education facilitator.
Hannah, welcome to the show.
[00:00:36] Speaker B: Hi Keith, thank you so much for inviting me. This is very exciting.
[00:00:42] Speaker A: Now before I get into the questions, I'm sure everyone is to die dying to hear the answers to.
We met 10 years ago thereabouts when both served on the commission on disability issues for the city of Tucson.
And then we launched Touch and after we both left the commission and we found are reconnected at a gala of some sort. And so that is how this episode came about.
Sex. What's the big deal?
[00:01:46] Speaker B: Yeah.
[00:01:48] Speaker A: Why is it so addicting?
Well, that's the hard hitting question, Johanna.
[00:02:04] Speaker B: Yeah, I mean sex is great. Everybody likes it, you know, mostly.
But for some reason, you know, if, if you have a disability, you're, you're not supposed to have the same relationship with your body and people get really uptight about talking about sex already in general. And then when you add disability in the conversation. Yeah, it's. People really squirm.
[00:02:36] Speaker A: Why do you think that non disabled people think that just by having a disability it should negate your human desires?
[00:03:00] Speaker B: I mean, the short answer is ableism.
[00:03:04] Speaker A: Please define that for people who don't know what that is and thinks it's nothing more than a made up term, which it is definitely not.
[00:03:19] Speaker B: Yeah, I mean ableism basically is the idea that having a disability of some sort makes you less than and that, you know, people should strive to overcome their disabilities, that a disability is a shortcoming and folks with disabilities should be pitied or, you know, helped because their lives are so tragic.
[00:04:00] Speaker A: Yeah. I remember doing a paper on disability sexuality back about 10 so years ago and Tom Shakespeare, that, that's his real name, Tom Shakespeare wrote a brilliant book called the Sexual Politics of Disability and in one anecdote in one of the later chapters he cites a teenager in a wheelchair who brings home her non disabled boyfriend.
And the parents scarce and the mother is like, really? We thought your disability would take care of this so that we wouldn't have to go through the embarrassment. I'm obviously paraphrasing there when I read the that antidote and Vincent the uk, trust me, it happens everywhere.
The breath went out of my body, I kid you not. I was laying on my couch and all the breath went out of my body because I was so shocked and horrified that any parent would say that to their child in front of their romantic interests or romantic partner.
But we're not in the uk. We're in the United States in.
We have a slightly different view on sexual education.
Yeah, I'd say yes and slightly. It's probably the big, biggest underrated word that you hear this whole episode.
And I'm not sure how to start it, except that there seems to be two prevalent frames of thought. Either teach it or abstain from it. And I'm not trying to badge religion here. I. I'm religious myself, but the whole. Abstain from anything, any education around sex. And when you get married, you'll figure it out with your wife.
[00:07:42] Speaker B: I think.
[00:07:43] Speaker A: And so those are the two prevalent modes of how we view sexual education. Oh, no, I. I shouldn't have said sexual sex education in America. Hannah, ple.
[00:08:08] Speaker B: I mean, I think everyone would agree that the United States has always had a more conservative approach to sex education than a lot of other Western countries.
That's particularly so now after, you know, Roe v. Wade, that, that now the conversation around sexuality and bodily autonomy has really shifted in this country. So if I already thought that we were a little puritanical in our approach to that, and now it's significantly worse. So in general, I think that that's there regardless of disability. Right. And then when you factor in the fact that even though the United States has the ada, right, the Americans with Disabilities act and a lot of other countries don't have similar laws, but still we are not very forward thinking about self advocacy and, you know, just general independent living and that sort of thing. So that just adds.
I think it, it adds fear to the conversation that already had a lot of fear in it. Generally, I would say most parents of any kids, that's the thing they're the most worried about as those kids get older is their exposure to sexuality. And then when you have the potential vulnerability of somebody with a disability, then I think parents really are just frozen with their own fear around the subject.
And, you know, most parents didn't get great sex ed, so a lot of them feel overwhelmed.
Yeah, they feel really overwhelmed because they don't feel like they have the information.
But the reality is, okay, the statistics, the data show us that young people are. Make less risky choices.
They have sex older, and they're more likely to use protection if they have sex education, comprehensive sex education.
So while there is this myth that if you talk to kids about sex that makes them want to do it, it's just not true. And they probably.
[00:11:09] Speaker A: My father talked to me about guns once, and that didn't make me want to go to A shooting range.
[00:11:24] Speaker B: I think, I think kids already are curious. Right. And we already have hormones and we have those hormones, you know, regardless of most disabilities.
So all of that, all of the impact of puberty doesn't change if your kid has a disability. So nothing really goes away. I would argue that because of the rates of abuse and exploitation, particularly of certain, certain groups of disabilities are so incredibly high that disabled children need this kind of education even more than non disabled kids.
You know, if you need personal care on a regular basis, especially as a young person who's just starting to manage their own career, you're very vulnerable.
If you are somebody who already struggles with, you know, a negative self image, that sort of thing, because of the ableism in the communities around you and in our general culture that makes you more vulnerable to exploitation, you're not as confident. Right. And all of that is helped by comprehensive sexuality education.
So to me, when I just don't see a reason, I truly do not see a reason not to be educating kids of all sorts, but particularly kids with disabilities, when you start looking at those statistics, they're pretty horrific. And depending on how you break it down by diagnosis, certain groups really, it's horrifying and I don't know how you could see that and not want to protect your kids. You know, and not talking about it doesn't protect them.
It just means that they're less likely to tell you if something happens or potentially they don't have a way to communicate an assault when it happens because of a lack of education. You know, literally not knowing the words for their body parts.
[00:14:15] Speaker A: Yeah.
[00:14:15] Speaker B: Or yeah, it's tried. You know, I've heard so many horror stories over the years, honestly, that that's the other reason is usually people don't get in touch with me until something's already happened.
So, you know, usually, I mean, hopefully it's not something horrific. Yeah. Often it's more like my daughter came home and told me she has a boyfriend now and the parents are now completely freaked out.
[00:14:54] Speaker A: So before we go any further down this. Maids. That's wonderful, wonderful maids of sex education.
Comparing it to the non disabled peers. To the disabled peers in how certain schools in certain states manage or mismanage the education.
What got you into being a sex educator and pardon the phrase, what bit you?
Where did the bug bite you?
To really get in to making that your trio because it's a very interesting career to have. I don't know if anyone else has ever told you that.
[00:16:18] Speaker B: Well, I will. I have to say that this Is really my side hustle.
No, it doesn't pay so great, I'll tell you, but I love it and I'll keep doing it as long as there's people who want the information.
So I started, like so many folks who work in disability services, I started in, in home care, you know, habilitation, respite, that sort of thing.
And I like to learn, so I took all the trainings I could.
Eventually I started working in employment services with transition age youth. And I started realizing pretty quickly that there was an issue.
Young teenagers, young adults, they were venturing out into their. Some of their first work experiences and they were encountering all these social expectations that nobody had prepared them for.
So there would be situations like, you know, a young guy gets a complaint of sexual harassment against him at work because he isn't taking the hint. And he keeps asking a co worker out. Right. And it wasn't that he was rude or disrespectful. He just didn't understand the social norm and he didn't understand the, you know, the unspoken communication.
So through no fault of his own, he was reprimanded at a job, not realizing he'd done anything wrong.
Those kinds of examples are very common.
And when I started talking to families, I quickly just realized they had no support.
The schools were not educating their kids alongside other kids in health classes, and parents did not feel confident. Like I said, some of them felt like they didn't have the information anyway for themselves.
But if their child needed any kind of serious adaptations to the, to the, you know, curriculum, they didn't know how to do it.
And they weren't getting support from, you know, case managers at the state, anybody. Nobody, Nobody wanted to touch it. I think liability, you know, is probably why. So agency providers of all sorts, they weren't going to do it.
And because those topics don't particularly embarrass me, I just started talking to families and looking for resources.
[00:19:27] Speaker A: Why don't they embarrass you?
How did you get that superpower?
No, I'm acting. I'm actually legit curious on why.
What is shockingly, shockingly and ironically the most uncomfortable and shameful.
Shameful in all quotes topic. And yet it Sacks has been with us since the dawn of time and it is legally the way we further odd speech seeds.
[00:20:40] Speaker B: Yes.
[00:20:42] Speaker A: And yet it's. It's so taboo outside of marriage, but it has to be the right marriage. And even then there are people who think that sex should only be used for procreation.
[00:21:09] Speaker B: Right?
[00:21:10] Speaker A: Yeah.
Yeah. Take away Sex from any marriage after the procreation duties are done, watch that marriage crumble.
It's literally the glue, the intimacy glue that holds two people together.
[00:21:45] Speaker B: Well, let's not get too carried away because there are people who are asexual or aromantic or, you know, yet there are.
[00:21:56] Speaker A: But I would thinking of the original definition and how that has always been with us. And yet we were so scared of that. And yet without it, the human race as we know it would no longer exist.
It is the.
It's one of the most basic implimable needs that humans who are animals by the way, have a need. And yet we have such a complicated relationship around even just the what acts.
Acts. To say nothing of the actual. So that's where I was going back.
You're absolutely right. Sexuality and terms are ever expanding to include other modes and other interests in life. Talk about those that are outside of everything. I just said that words way more traditional.
[00:23:57] Speaker B: Yeah, I mean, I think. Well, as far as my interest in sex, I think I was just kind of a nerdy kid. And I didn't get very good sex ed. My parents didn't talk to me about it. School, you know, my sex ed class was taught by the football coach.
[00:24:18] Speaker A: I am so sorry to hear that.
Okay.
[00:24:25] Speaker B: Always. Always. And, and so because of that and because I was a reader, I started educating myself and I found all kinds of interesting information out there.
When I went away to college, I brought a copy. I don't know if you'll be familiar with this book. It's been around since. I don't know, the first.
The first version was probably in the 70s or early 80s. It's called our Body Ourselves and I've heard of it. Yeah. And they. I don't know when the last, most recent version came out if it's been.
I know in the 90s they were still updating it and I had a copy of it.
[00:25:14] Speaker A: It's not like they did him third sex.
[00:25:20] Speaker B: Yeah, but in a much. Okay, but in a much less medical model. Right. And more anecdotal and lived experience. But it covers everything and it has anatomy drawings and interviews with folks of all different ages experiencing different things related to sexuality. And it's specifically geared towards female bodied folks.
And because I had that on my bookshelf in college, I became the resource. I became the sex educator in the dorm. So whenever somebody thought, you know, I don't.
Something doesn't look right or yeah, we're gonna go and check in Hannah's book.
So that was, you know, that was the beginning and I guess it never stopped.
And I just kept, kept reading.
So by the time I was talking to these teenagers and their folks, I, it was no big deal to me already. And once people realized that I wasn't going to blush and I wasn't going to turn them away, word spread and I just had more and more parents, you know, giving me a call or.
Well, my friend told me that you might know about something. I just started gathering resources and saving them so that if parents did bring something up, I, I had something to share.
And you know, I had a bachelor's in psychology so it wasn't so far off.
And you could just see the relief of the young people and their caregivers.
The idea that there was information out there that was relevant for their family, they didn't have to make it up themselves. You know, there were, there are experts doing research and creating material for people to engage with.
And it's a lot of, it's free. You don't, you know, you don't have to pay, I don't know, a therapist to come and meet with your teenager.
I think the other piece was helping parents understand that their child deserves to have healthy sexual relationships in their life. And, and just reminding them, you know, that this is a fundamental part of our humanity, like you said, and if they love their child, why would they want to keep that from them?
[00:28:19] Speaker A: Let's talk about how states vary in how the tree, how the not treat, teach or even authority sex education, because that's a big discrepancy throughout the country.
[00:28:47] Speaker B: And even to make it even more complicated, it can vary in the state, it can vary within the state because of school districts. Right. So and once you start talking about private schools, it's a whole nother thing. So basically in schools they have the education version of the ada, which is the idea, and it regulates how kids with disabilities can be educated and what they have the right to experience in their education.
That's all fine and dandy and that's federal, right? It's everybody, but it doesn't say anything about sex. Sexuality is not one of the fundamental independent living skills that federal services reference.
So nobody has to include it anywhere. And then in here in Arizona, we're an opt in state, which means that families have to tell the schools that they want their child to be in a health class. If they don't say that, they are not going to be included.
Most states are opt out states, which means your kid's going to be in that health class unless you say no.
How that impacts Arizona's children is that for a lot of kids that have an individualized education plan, an iep, so they're getting some sort of extra support in some way in school.
Most of those families, in my anecdotal experience, okay, the people just kind of forget to remind them that they need to opt in.
So especially if parents aren't from Arizona, they just assume their kid is getting health class and they're not.
And, you know, as much as it frustrates me, I also think that the expectation on teachers to have the skills to modify sex education curriculum for kids with really significant disabilities, they're not getting educated in that in college.
Nobody's teaching them how to do that.
You know, how. How are they.
How are they supposed to deal with one?
A culturally challenging topic, we can agree, regardless of, you know, outside this country, it's not quite the same in a lot of Western places, But here, most people have conflicted ideas about sexuality in the education of their kids. And then on top of that, you put poor funding to public schools, a lack of education of teachers, and how to adapt a lot of the topics that they're expected to teach.
Yeah. I mean, it's just one.
One barrier after another for a kid with a disability to get a good sex education in school if they go to a private school. Private schools are not held to the idea standard.
And I think a lot of parents don't realize that when they put their kids in a private school, they say, well, they're not following. Following his iep. Yeah, they don't have to.
They're a private institution.
[00:32:51] Speaker A: Yeah.
[00:32:52] Speaker B: So, you know, it's very complicated. And what it means is that families often have to be the ones to do it, which for a lot of people, they say, well, that's how it should be anyway. Right. Families should be providing sex education to their own kids. Sure. Okay, that's great. But just for example, let's say you have a young person that has a disability that impacts their communication. They use an occom, and the parent doesn't really know how to program it. Right. Because they get help at the school. They get help from their state worker, whatever.
Well, I don't know about you, Keith, but I have never seen an OGCOM with intimate body parts on it.
So you can say leg and arm and hair, but I've never seen vulva or penis.
So how is that child learning appropriate terminology for their own bodies?
They're not.
[00:34:03] Speaker A: No.
[00:34:04] Speaker B: You could say the same thing about kids who are learning sign language.
[00:34:09] Speaker A: Yeah.
[00:34:11] Speaker B: When we're, when adults are responsible literally for the words that kids use, we often do them a disservice. But by pretending we don't know they need those words.
There's so many problems with that.
And so, you know, here you have a parent who isn't even really thinking about it. And even if they wanted to, they might not know how to do it unless they're asking professionals who work with the machine that they have to find these specific things for them. It can be a huge challenge.
Yeah.
And then you've got things like, I don't know, does that persistent myth that people with disabilities are often put into two broad categories regarding their sexuality. Right. You're either a precious angel baby of perfection who is innocent and has, you know, no base earthly desires and would never want a partner. Right. Would never even think of that because you're the perfect little baby. And then the other side is, you know, every young man with a disability is a potential predator that they somehow are going to be compulsive and un, you know, unable to control their massive desires. So you have a culture that looks at folks like that.
[00:35:55] Speaker A: Yeah, yeah, you do.
[00:35:58] Speaker B: And neither, neither group is going to receive what they need because of these erroneous myths.
[00:36:08] Speaker A: Yeah, I mean, I had to suck in my breath because those myths or those erroneous stereotypes are so prevalent, particularly with young men, particularly young men with disabilities.
But if you want to talk about holist statistics, I think that women with disabilities are three or four times more at risk for sexual assault or sexual abuse than their non disabled counterparts.
[00:37:08] Speaker B: Yes, absolutely. And for multiple reasons which people don't seem to want to address.
I mean, so there's the. I alluded to earlier, if you need certain types of personal care assistance that can make you more vulnerable.
If you're struggling with your identity and body shame, which is so common in the disability community, that can make you more vulnerable because it makes you less confident and more insecure, which is pretty appealing to a predator.
The other thing is that if you, if somebody struggles with expressive communication because they're.
It's more difficult for them to express themselves in a way that the people around them understand.
That makes you attractive to a perpetrator as well. So there's so many things.
When you add on the fact that we have a very long history of not respecting people with disabilities lived experience, these folks are not seen as reliable witnesses to their own abuse.
So if somebody reports abuse or exploitation, often it's disregarded unless a non disabled person also was a witness.
That in itself means that most abuse and exploitation is not prosecuted.
It's pretty disturbing.
And it leads to these statistics that. So not only, let's say women with various disabilities are more likely to be abused and exploited, but the people that are are more likely to be abused multiple times in their life.
So we're not talking, you know, being attacked, walking down the street by a stranger. What we're talking about is consistent, systematic abuse by people who are working in the service systems. So these are teachers, classroom aides in home care providers, people who have intimate access to these individuals, group home employees and managers.
It's really endless. And the fact that we can acknowledge that those statistics are true and they're terrifying and they scare everyone, but yet not feel compelled to do anything about it. When education, kind of the simplest prevention is for some reason off the table. It doesn't make any sense to me at all. It really doesn't.
[00:40:41] Speaker A: Judge lense to you.
It doesn't make sense to me either.
It's.
It's almost like parents and caregivers think that by not teaching sex education that sexual desire, which again is paramount to humanity, will magically go away for their child or children with disabilities.
[00:41:34] Speaker B: It's two things. It's two things. So we are simultaneously terrified of people being victimized. Right.
But also when we don't give them any. In any education because we don't want them to have a, you know, regular experience of their own sexuality in a positive way.
So we're not protecting them from potential abuse by not educating them. And we're also creating a barrier so that they can't have any of the positive experiences of sexuality.
We're doing it all wrong.
We're doing it wrong in both ways.
So, you know, sexuality is a big part of being a human being. And why would we want to take that away from people that we care about? And then being a victim of sexual abuse and exploitation is absolutely horrific. And why wouldn't we want to give them the ability to protect themselves? We're weird. Yeah. It's just ridiculous. We're doing it all wrong.
[00:42:56] Speaker A: Yeah. And the, the, the empowerment aspect, which is so lacking in the early formative years and then the teenage years. Yeah, you're right. People in college aren't taught this stuff. It's taught earlier, and people just assume you or they know it already.
It. It's like, I got my sexual education, no sex eds when I was 7, 8, 9.
Probably could have waited until middle school or teenage years where it would have made a lot more sense.
Practicality, sense. But I mean, that's a standard time for sex education to be taught.
And. But if you're not taught it, and this is a very important point we haven't yet covered, is that there's a difference, a marked difference from getting a standard health sex ed class and getting a real buy the.
Not by the books, that's the standard health sex ed, but another court about the sexual mechanics, sexual safety. I mean, if we can give little kids and children a game, electronic game called Operation, it just doesn't make sense that we give them permission sort of to play doctor when they don't know what a doctor really is outside of that game.
And yet we cringe and recoil few years later when there are questions, talk more about how people are utterly clueless, that those are two very different classes and that we only teach one if we teach it at all.
[00:46:46] Speaker B: Yeah, I mean, what I would love to see and something that I'm often advocating for, is that folks that experience any kind of a mobility impact from their disabilities, so whether that's, you know, cerebral palsy or spinal cord injury, whatever, that they are encouraged to work with a pelvic floor physical therapist, an occupational therapist, to specifically understand their body mechanics and how that could be impacted by a sexual encounter. That, to me, is really important information if we want people to enjoy their body. Yeah, and learning to enjoy your body can be a massively empowering thing for somebody who, you know, is raised in our.
Whatever, smothered by ableism every day of their life.
You know, if we expect them to be confident, independent people who have wonderful relationships and have good lives, these are things that we should be teaching them. Honestly, I don't. You don't hear a lot of conversation, in my experience, around the physicality of sexuality and disability unless you're in the spinal cord injury community. That for some reason is the only community of folks whose doctors are very explicit. They're given very, you know, very helpful information. I think all I can think is that it maybe it's because folks are usually a little older if they get a spinal cord injury. And so potentially, you know, maybe they already have a partner or whatever that people see them differently. It's really bizarre. I mean, most of my work over the years has been with folks with intellectual and developmental disabilities. And to see the difference between how somebody with a spinal cord injury is talked to about sex versus somebody who, you know, has down syndrome, for example, it's pretty shocking. You can see the bias, like it's right out there.
[00:49:31] Speaker A: What is the Bias of parents of children with intellectual disabilities in regards to understanding and comprehending what sex is, what the mechanics are and what are some horrible assumptions that parents make about their own kid or children regarding this life changing topic.
[00:50:20] Speaker B: Well, and it's not just parents, it's school, schools, it's, you know, it's everybody.
Because I will say there's research is clear that depending on how a parent was informed of their child's diagnosis, that pivotal place in that family in their life has a massive impact on the potential success of that child. So if that family, you know, with that baby with down syndrome, if, if the doctor comes in is just like, congratulations, you have this beautiful perfect baby who happens to have down syndrome, I'm gonna, you know, we're gonna have to hook you up with some other doctors. But look at that smiling face and all those fingers and toes and everything's good. And you know that that child will grow into a very different person than a family who has a doctor who's like, they're never going to work, they're never going to get married, they'll never be able to live alone.
You know, it becomes a self fulfilling prophecy. And so it's not all, I just want to say, because it's not all on the parents, right?
[00:51:37] Speaker A: Oh yeah. And I didn't mean to articulate that it was.
I just wanted to hear some of the assumptions that people bring erroneously, but maybe not because of knowledge, maybe out of their own ignorance of for sure, people with intellectual disabilities topic.
[00:52:21] Speaker B: Yeah, it's really.
I noticed too. I noticed two, two things that happen frequently that I just see over and over again. One is the idea of the concept of a developmental age as opposed to a chronological age. Right. So people will say, well, he's 23, but he's really more like a 12 year old. Right.
And because of talking about it that way, then those people become inferior, infantilized, all by usually everyone in their life. So all of a sudden this grown adult is being treated like a junior high kid. Well, you know, when we're talking about intellectual and cognitive limitations, they've still been on the planet, you know what I mean, for those 23 years. They're not 12.
And just because they can't do complex math doesn't mean that they can't make decisions for themselves.
It's.
Yeah, it's very frustrating.
[00:53:41] Speaker A: And so.
Well, there's a lot more to talk about.
I mean, the big topic that I want to zone in on in the next part of the discussion has to do with sexual empowerment because and sexual confidence, or confidence in any and every type, because that is the momentum that propels a person towards their goals, whatever that goal may be. But in a sexual sense, you have to understand what sex is, but then you have to understand that if you wanted, there's not be wrong with wanting it, and that no matter your mobility or intellectual limitations, you are worthy of sexual gratification. Because we are meant to enjoy our body. They all pledge red swords when you really get down deep.
We're basically walking in pledger Ved swords and so I look forward to continuing this very important topic with my dear friend Hannah Wilke. See you next time.
You have been listening to Disability Empowerment. Now I would like to thank my guests. You are listener and the Disability Disability Empowerment Team that made this episode possible.
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