Positive Approaches Journal, Volume 9, Issue 4

Volume 9 ► Issue 4 ► 2021

Our Contribution to Healthy and Unhealthy Relationships

Sharon Mahar Potter, M.Ed.

Introduction

We, the families, teachers, support professionals, behaviors specialists, and a cadre of others, do our best to support people who have Intellectual Disabilities/Developmental Disabilities/Autism (ID/DD/Autism) For the most part we do a pretty good job. When it comes to sexuality and relationships, we can do better.

Sex is a difficult topic. As a society we use sex to sell pretty much everything from cars to clothing. Social media exposes all kinds of sexual behaviors; seductive language, revealing clothing, twerking! Sex is everywhere, yet we do not discuss it in ways that educate and help people navigate their world.

Depending on our age, our particular family, our religious affiliation, the messages we received about sex vary; “wait until marriage,” double standards for males and females, and ‘shaming’ related to masturbation and most likely no conversations regarding Lesbian/Gay/Bisexual/Transgender/Questioning (LGBTQ) people. Even if we develop our own values and beliefs, those messages remain. Sex education, if there was any, was usually taught separately to male and female students. The content was basic body ‘plumbing’, rarely discussions of intimacy and consent.

How do we actually learn about sex? Maybe we had “the talk” with a parent, or a book might appear, or conversations with friends could enlighten us. In other circumstances, introduction to sex might have been a positive one with romantic partner. For some, sexual abuse was the educator. Considering the rate of abuse among people who have ID/DD/Autism, which is seven times higher than the general population¹, the issue of sexuality can be quite complicated. This is hard work. We must get out of our comfort zones and address very specific sexual issues in a nonjudgmental way. We also need to help those we support to enjoy healthy relationships, including sexually intimate ones.

Sex Education

When I am teaching a sex and relationship class or working privately with an individual, I always let them know they can ask or tell me anything. My classes include the following:

Lack of Basic Sex Education

Over the years, there are a few situations that stand out for me. When I am asked to consult, I frequently find two constants. First, an individual struggling with a sexual issue and second, caring individuals who either do not know what to do, or because of beliefs, failed to support the person. Following are examples of information omitted, misunderstood or given in a manner that was confusing and caused unnecessary stress:

Bob, a gentleman in his 30’s, lived with his cat, attended a day program and had a part-time job at a local market. He was referred to a therapist for ‘suspected bestiality’ after being observed holding his cat while aiming his penis at the animal. His cat was taken away. In the process of getting to the bottom of this situation, the therapist evaluated Bob’s knowledge of sex and body functions. Bob had a fairly good grasp of basic sexuality except for one critical piece of information. Some well-meaning person told him that, “A liquid comes out of a man’s penis and it makes babies.” Bob’s interpretation of this information was that if he urinated on his cat, she would have kittens. On the surface, rather funny, but not so much for Bob, or the cat! After the therapist provided accurate information and got Bob to repeat the information back to him, Bob eventually got his cat back and acquired a kitten as well.

Todd, a 37-year old man who had Down syndrome and was stealing women’s underwear. While attending a birthday party for a female friend, he went into her bedroom and took panties and bras from her drawer. On another occasion, after a visit with his family, staff found undergarments that belonged to his sister. When shopping, he often headed to the lingerie department. Staff were concerned that he might ‘escalate’ and harm female staff. I met with Todd, and after a fairly brief discussion, it was clear that he believed he was female, technically, a transgender woman, and wanted to wear female underwear. The agency was concerned about his safety and would not agree to clothing that might encourage teasing, harassment or worse, although he was only interested in underwear, not exterior clothing. Following a discussion with Todd and agency staff, they purchased female undergarments, subtle, but feminine, panties and a matching Cami tops in pale yellow, green, and blue. Once his needs were met, he no longer had a need to steal underwear.

I had a scheduled monthly meeting at a local agency to provide a class on relationships and sexuality. After coming and going for several months, a person with a disability, in his 20’s who provided maintenance for the building approached me saying “Heh, you’re the sex lady, right?” “Yep, that’s me,” I responded. He was a man of very short stature and he asked, “Do you know where I can get small condoms?’ Although technically, the length doesn’t vary much, there are ‘snug’ condoms which usually are appropriate for those with smaller anatomical needs.

Lack of Information Regarding Medical Issues

Medical issues can be traumatic to say the least. Following are two examples of situations with serious consequence:

George, a delightful, outgoing man, lived in a group home and worked in a local restaurant. He loved his job and had an active social life. The agency that supported him began receiving phone calls from his employer. He was getting erections and bringing it to the attention of, well, anyone in close proximity. He lost his job. He consistently said he didn’t want it to happen, but it kept happening. Unable to resolve the issue, I saw in his file that he had a medication change within the past 2 months and contacted the pharmacist who consulted to the state. We learned that one of the rare side effects of the new medication was involuntary erections. Although George was happy about the erections, his life was turned upside down. Another medication was identified, he got his job back and his life returned to normal. A huge thank you to the pharmacist. I highly recommend consulting medical professionals to rule out medications or other medical conditions.

On the ‘life- threatening” end of things, I was asked to provide an assessment for Chad, who was hospitalized twice for anal bleeding. He was inserting objects, including ball point pens into his anus. After confirming his knowledge of sexual activity and discussing his injuries, I learned that when masturbating, he inserted ‘objects’ into his anus to stimulate the prostate, which intensifies orgasm. With his permission, I met with his DSP and explained the situation. Then I asked, “Why hasn’t someone purchased a device made for this purpose?” The answer was that they didn’t think they could. It was resolved rather quickly. Chad, one of his staff, and I drove to an adult store where a device and lubricant were purchased. Chad was responsible for cleaning and storing the device and he has not had a hospital visit since. I am acutely aware that “topics such this” are difficult to deal with, but until we get out of our comfort zones and provide what adults need to be healthy and safe, people can literally die.

Post-Traumatic Stress Disorder

PTSD is all too common regarding people who have ID/DD/Autism. Talking about sex and relationships can be triggers. I mention this before I begin all presentations or workshops. I spoke at a conference, which was attended by professional staff, family members as well as people who have disabilities. During a 15-minute break, three people who have ID/DD/Autism came to me and shared the following:

First, a woman approached me and crying, told me she had been raped as a teen and she never told anyone. Then a woman who broke up with her boyfriend, but wanted to remain friends, however he would only continue to be her friend ---if she performed oral sex for him--- which she was doing and it made her feel “yucky.” What should she do? Then a gentleman told me that he had touched his niece in her ‘’privates” and knew it was wrong and asked, “What should I do?” Fortunately, there were support staff, therapists and agency personal present, who stepped in and assisted the three people. The incident regarding the man and his niece was reported to the police. The reason I mention these three people and a connection to PTSD is because the information can trigger reactions, not only of people have disabilities but in the general population. Working in small groups is an opportunity to discuss and support individuals as we move from topic to topic. Susan, 32 and David, 40 were in love and wanted to get married. Although they spent as much time together as possible, they had not yet been intimate. I was asked to meet with them and determine what supports they needed to move forward.  David was quite capable, living in an apartment with some help related to finances and shopping. He had a job as a janitor, and he enjoyed cooking. Susan had been in several abusive relationships, including being tied to a bed, beaten and raped at 13 and had a child at 14. This was her first consensual relationship. I asked Susan if it would be all right with her to talk with David about her earlier abuse. She agreed. During my next session with them, I said that when they had their first sexually intimate encounter, David might touch her body in a certain way or in a certain place and although David would never hurt her, her body could remember the pain and terror from years ago. We then were able to come up with ways to prepare them for a loving, trusting, sexual relationship. About a year later, they were married and doing just fine.

“Can you please come and help us? Doug is a great guy, he is 25, very athletic, but every once in a while, he beats someone up for no reason.” A few days prior to the call, Doug broke the nose of Joe, one of his favorite staff and spent 3 days in a psychiatric inpatient unit. Two months prior to the incident with Joe, a well-meaning woman took a warm towel out of the dryer, opened the bathroom door, just enough to offer the towel to Doug, who grabbed her arm and broke her wrist. Reviewing his history, I learned that as a child, he was sexually assaulted by his stepfather. Beginning the assessment, I asked Doug to tell me what happened with Joe. He said, “I just got home from work and wanted to take a shower” and Joe said, “Hurry up, dinner is ready.” He didn’t remember what happened, except that everything got red and he hurt Joe. Proceeding with the assessment, Doug had a clear understanding of sexuality, relationships, and understood everything I asked him, including the meaning of consent. Already knowing about his childhood abuse, I asked him if anyone had touched him, sexually, without his consent. “Oh, yea, lots of times. My stepdad would take me into the bathroom and hurt me.” I told him I was sorry that he had been hurt, then I asked him to tell me about the abuse. He said his stepfather would grasp his shoulder and take him to the bathroom. Before he got into the details of the abuse, I asked him to close his eyes and tell me what happened with Joe. He repeated that he just got home from work and wanted to take a shower and Joe said, “Hurry up, dinner is ready,” but this time he motioned that Joe tapped him on the shoulder. BINGO! I explained that sometimes our bodies remember bad things from the past. Even though Joe is a man who would not hurt you and you are not a child; your body remembers that touch on the shoulder. He was quiet for a bit, then jumped up, went to the office and came back with Joe, back on the job with a broken nose and two black eyes. He said something like, “Listen Joe, when you touched my shoulder, it was like you were my stepfather and I was a kid, but I am grown, and I know you would never hurt me. I am so sorry.” I must say, it was one of the most profound experiences of my life. Although Doug’s trauma was documented in his file, no one connected the dots.

Trust and Peer Pressure

We all want friends, relationships and social interactions. Things can become complicated when we trust and depend on others. I was seeing Katie, the young woman, mentioned above, whose former boyfriend, was pressuring her to perform oral sex. She now understood that if he really was a friend, he would not be treating her this way. She told him she didn’t want him as a friend, and she was doing very well. During counseling sessions, I sometimes use a simple game used to create situations and discussion. Three paper cubes. One has names (boy or girl friend, stranger, doctor, etc.). If I am working directly with a person, my name is on the cube as well. The second cube has places (in a movie theater, at the park, on a bus, in my bedroom, etc.). The third has actions related to sexuality (tries to kiss me, asks me to take clothes off, touches my breast, etc.). During our weekly meeting, we were sitting at a desk in her room and decided to play the dice game. What came up after tossing them was “Sharon asks me to take my clothes off, in my bedroom.” Katie said, “That’s a hard one.”. I was slightly taken back, knowing how far she had come and asked, “Why is that hard?” to which she replied, “Because I trust you.” We continued our discussion to include what kind of things you do with friends, strangers, neighbors, teammates family, partners and people you trust.

Well-Meaning People ‘Protecting’ Others

There are so many situations where good caring individuals make a situation worse. Families might not want their son or daughter to learn about sex and relationships. “They might  want to do it,” or “They don’t understand.” They want them to be safe. My experience has been the opposite; not having accurate information increases vulnerability. Families can provide support in a way that results in confidence and the ability to explore relationships or they can discourage and sometimes shame their loved ones with words or actions that say “No, this is not for you”, or as one man told me “I cannot have a girlfriend because I am retarded.”

Phil lived with his parents until they both passed away, then he moved into an apartment in his sister’s house. There was an incident a few months prior to my involvement. Phil’s sister suspected that a local man, John, was taking advantage of Phil. She waited until she saw his car and called the police, who “caught’ the two men involved in a sexual act and arrested John, who was now in jail. There was great concern from the community since Phil and John had been friends since they were children. I was asked to determine if Phil had the ability to give consent and understood peer pressure and boundaries. Following my discussion with Phil, there was no doubt that he and John were in a loving consensual relationship. I asked him if he could talk with his sister about his feelings for John and he said, “I tried, but she said I don’t understand, and I can’t be gay because I am retarded. Besides, she is the only family that I have.” I asked if he wanted me to talk with her and he did not. I was able to provide information confirming consent between the two men and John was released from jail. Needless to say, their relationship did not continue.

Finally, there are countless people who fall under the following scenario. Two people are “caught” involved in some sexual act. Questions are asked, often in a manner that is shaming or blaming, resulting in identifying a victim and an offender, when in reality, they were just trying to figure it all out. I am not suggesting that people with ID/DD/Autism are not capable of assault. I am suggesting that we need to spend time helping people make their way safely through the maze of sex and relationships.

Conclusion

References

Biography

Sharon Maher Potter has experience in three specific areas: Sexuality and relationships and people who have intellectual disabilities, problematic and sexual offending behaviors, and support LGBTQ individuals with or without disabilities.  She has a B.S. in Psychology, University of Scranton and M. Ed. In Human Sexuality, Widener University.  She has worked in Pennsylvania Protection and Advocacy as an Early Intervention Project Coordinator (1989-1992), and as a Deputy Director (1992-2002). She is the founder of Common Roads, a support group for LGBTQ teens and young adults. She currently serves on CHATID, a committee of Geisinger Medical School that is addressing how the medical community supports people who have ID/DD/Autism.

Contact Information

Sharon Maher Potter

shmpotter@gmail.com