Personal Story

Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities

Navigating Conversations, With Hope


Lindsey Catherine Mullis is director of inclusive health and wellness at the University of Kentucky Human Development Institute in Lexington, Kentucky.

A mother and her three young daughters. They are all wearing matching pink t-shirts.

The author, with her daughters, at home in Nicholasville, Kentucky.

We adopted our daughter Caroline, now 10, from China when she was 3 years old, and we have two younger daughters, ages 6 and 2. It’s been incredible to watch them growing together.

As a presenter for healthy sexuality workshops, whenever I have the opportunity to talk about my family, I show a picture of Caroline holding hands with Marcella, our 6-year-old. They hit many of the development milestones together and are very close. As a parent, I have the same expectations for them and want them both to be curious about their own growth, to find love and self-love, to develop healthy relationships, and to know what it’s like to get their hearts broken. I want all of that for them, knowing that it will be a different journey for Caroline because she has Down syndrome and vision impairment and she’ll need different supports. And I know as she navigates all of that, she’ll be at greater risk for abuse, so I recognize the important role I play as a parent to support her as she develops her sexuality.

When I’m in the professional setting, it’s easy to talk about the different stages of development, but even for me, it can be different with that parent lens. Caroline is almost at puberty and we’ve yet to talk about menstruation, for example. Writing this article reminded me that I want to establish myself early on as a safe place, where all of my daughters can come and talk about puberty, sexuality, anything. It’s important to do that early, and I’ve already started having some other conversations. At dinner recently, Marcella asked me if a girl can marry a girl, and I said absolutely. And we talked about the different kinds of love. In that moment, Caroline was just listening, but there’s value to that and she was engaged in the conversation. They both, I hope, heard that I’m here to support them.

The experiences I’ve had running parent support groups and doing sexuality training have shown me that some are thirsty for knowledge because of behaviors they want to address, or their kids are young and on the precipice of puberty. But those parents are matched, if not outnumbered, by parents who are just clearly fearful. It’s harder for them to receive those messages and the training in how to positively support the individual where they need to be supported, which means they might have to talk about a different gender identity or the fact that their child may be interested in things in their sexuality that they’re not personally comfortable with. And that’s really hard for a lot of parents to be receptive to, even though all of the research, literature, and training underscore the need to talk about this.

Resources that take a human rights-based approach … can help shift attitudes and stigma.

In a recent training I did, there was a parent who had been one of the conference organizers, so she knew this was an important topic, but she kept saying she let her sons’ father deal with all of this. Then there was an incident in a store when someone pointed out to her that her son with a disability had his hands down his pants and she was mortified. I said, “Let’s acknowledge you’re uncomfortable, but did you ask him why?” This was an opportunity to talk about public vs. private behavior, and as we went on talking, she got less resistant. By the end of the day, she said she had learned she needs to acknowledge that this is an important topic and that she has an important role to play. The next week I got a note from her that she had worked with his support person to incorporate public/private conversations into his support plan. It was a great win!

There are some parents who feel there is an agenda out there from people “pushing” alternative gender and sexual identities onto people with disabilities. The training I’ve done talks about how detrimental it can be for an individual with IDD to receive negative messages about their sexuality, so rather than talk about societal agendas, I suggest focusing on the individual they love and how to support them to live their fullest life. I suggest that parents can talk about what they believe, but acknowledge there’s a range of opinions and let the individual develop their own sense of the options. It is a way to honor parent values and also those of the individual. Now, if it’s paid support staff, we acknowledge their values, but then explain that they need to put those on a shelf because they are there to address the needs and values of the person they support and not impose their own beliefs. So, there’s a clear difference between natural and paid support staff in this, and it is also tricky for parents and other natural caregivers to truly let the individual take the lead.

I might be an outlier, but I also think self-pleasure, especially for females, is too often omitted from these conversations. It’s on my mind to make sure that’s a part of the conversation with my own daughters as they grow up. There aren’t clear milestones for a lot of this, and I’m not going to force any milestones on Caroline. I just want to be available and ready when she’s ready to have those conversations.

The bottom line is that as a parent, I think many of us have a tendency toward overprotection, and it’s ironic because shielding people from education and experiences actually causes more harm. Higher levels of abuse against people with disabilities is a reality, so we cannot afford the risks of keeping information from our loved ones. I want Caroline to love, and be loved, in all the ways that are important to her.

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