Listening to Self-Advocates Voices

How Shameful, Negative Messages, and Fear-based Sexuality Education Puts People at Risk

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Being accepted for who you are and being in relationships has many benefits, yet people with developmental disabilities face barriers in achieving acceptance and for building friendships and romantic sexual relationships that they desire because of restrictions, lack of control, and shameful, negative messages. The article, Restrictions, Power, Companionship, and Intimacy: A metasynthesis of People with Intellectual Disability Speaking About Sex and Relationships by Rhonda S. Black and Rebecca R. Kammes, explores the voices of people with I/DD. 

Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. From these studies two competing themes emerged, control and desire. People with IDD have desires, and family, care-takers, organizations tend to want control of those desires either because they don’t believe these desires exist or they want to protect individuals. These competing themes are what puts people with IDD at risk. 

Looking at the visual, you can see that people with I/DD desire intimacy, friendships, and to be accepted for who they are, and correspondingly, how the controls, restrictions and barriers placed on them get in the way and put them at risk. 

Here are some quotes and points self-advocates made to tell this story.

Desire for Intimacy and Pleasure

  • “It’s nice to get married, you have a wife and you have a better life and a better future’’.
  • ‘‘I want to have some plans for the future. Like when, like going out with me or, you know, if I can just find one. Someone to go out with me’’.
  • One woman mentioned wanting to have sex because it was pleasurable, however, the majority of participants discussed sex in more shameful terms. 

Desire for Friends or Confidantes

  • Discussed feeling lonely as the main motivation behind this desire for friends or peers.

 Desire for Sexual Identity

  • Participants discussed how they had internalized beliefs that sexuality was not a part of their lives.
  • desire to move away from their IDD identity, and that they struggle to have an ‘‘as normal as possible’’ adult identity.
  • In one study, 18 participants indicated that they feel it is easier now to be openly gay than it was in the past.
  • Some participants indicated they did not feel they were able to express their sexual identity.
  • Many feel that others saw them as eternal children who were denied their sexual maturity.

Even though self-advocates express their desires, the results or response is often negative:

Restrictions

  • ‘‘They would scold me if they found out I was dating a young man”.
  • One woman was not allowed to have sex with her boyfriend, and that the staff at her group home would stop her from seeing her boyfriend if they found out, clearly. frightened of losing a valued person in her life as ‘punishment’ for having a sexual relationship with him.

 Powerlessness or Lack of Control

  • A male participant stated, ‘‘I had my room, but not my privacy’’.
  • ‘‘People think they can rule you because you’ve got a disability . . . You can’t choose the color that you like. As well as your boyfriend, you can’t pick’’.
  • ‘‘We broke up years ago … We had to be friends … Because it’s the rule of the staff’’.
  • ‘‘Life can be seen as going down a path that has been designed by others, in which you have to pass different challenges or tests that finally give you the opportunity to live alone, in a couple or to have a family’’.
  •  A lack of control over their lives can lead adults with ID to experience higher rates of mental health issues, isolation, and decreased quality of life.

 Sex is Secretive

  •  Participants said they were not ‘‘allowed to have sex with their boyfriends and feared the consequences of getting caught’’ Because they needed to hide their sexual activities, participants in five different studies spoke of meeting partners secretly to avoid reprimands.
  • Many participants felt that sex was embarrassing to talk about and that, if one had a sexual experience, it should not be discussed with anyone.
  • ‘‘However, we don’t know if [they] enjoyed it, wanted it, or if [they were] violently coerced’.

 Shame

  • Feeling a sense of shame in having sex outside of marriage and, therefore, did not discuss it.
  • ‘‘Most of the women considered sex to be at best a pleasureless, secret activity undertaken with men in response to biological imperatives and at worst, painful, dirty, and diseased’’.

 This article also shared some of the negative, fear based, and non-inclusiveness of sexuality education for people with I/DD. 

Here’s are some points about the current state of affairs (no pun intended) of most sexuality education

  • Sexuality education often focuses on physiology, but not how to handle relationships.
  • When individuals are taught to wait or learn to say no, and the negative consequences of having a sexual relationship are taught without mention of physical or emotional pleasure, they are likely to internalize a negative sexual self-image.
  • Most sexuality education received by adults with ID is heteronormative and does not educate PWID about homosexuality, bisexuality, or transgender identity.
  • People with I/DD often lack training regarding which sexual behaviors are socially acceptable. This lack of training can potentially lead to concerns with putting people with I/DD at higher risk of being victims of abuse and also of being perpetrators of abuse.
  • Overprotection can have unintended negative consequences. It can lead to risky acts and unhealthy relationships on the part of the individual with IDD, due to lack of awareness coupled with a desire to experience these relationships but feeling as if it needs to be done in secret.
  • A restrictive script in sex education. The focus was on how to say no, and how to avoid sexual risk situations, including the dangers of sexually transmitted infections. This left several of the young women ‘‘a bit scared about the whole topic’’.

 Moving Forward and Making Positive Change

Here are a few self advocate voices regarding what they want:

  • ‘‘Parents need to trust us, we are old enough to be in a relationship’’.
  • ‘‘A couple should have a chance to get to know about each other and to talk to each other in private’’.
  • Participants desired to be seen as an adult—not an adult with a disability, but an adult sexual being.
  • ‘‘Caregivers should expect people to want relationships and be prepared for a potential negative impact if they do not have the opportunity to form relationships or express their sexuality’’.
  • ‘‘Why are we being singled out for special treatment with secret special laws that do not reflect our opinions and have the effect of creating a barrier to our acceptance and inclusion”.

This last quote from a self advocate stating what they want sums it up:

“Provide comprehensive sexuality education for people with I/DD that includes discussions about desire, pleasure, appropriate dating behaviors, and the interpersonal skills needed”. 

If we listen to the voices of what people with IDD want and need, we can begin to move away from inadvertently putting people at risk by denying them this basic human right, to helping people have satisfying, healthy relationships. We can do this.