Sex and Parent Caregivers

Even though a lot more people seem to be talking about disability now, the way it’s addressed in society is still problematic, including the ways that talk often silences those who are actually disabled and gives the most voice — about disability! — to those who aren’t.

One of the many places where this often occurs is around sex.

It may seem silly that people who haven’t themselves experienced disability think that disabled people can’t or don’t have sex and/or experience pleasure, but this assumption is one of the bigger stereotypes that exists around disability, especially visible disability. This stereotype comes from another very common assumption – that all disabled people, regardless of their age or intelligence, should be treated delicately and as if they have the mind of a young child. A word for this is infantilization.

Infantilization frequently happens between people without disabilities and those who aren’t disabled. In this article, we’ll be specifically referring to infantilization between caretakers and the people they’re taking care of, including when those caretakers are parents.

It’s important to note that in some cases, infantilization can be destructive to disabled people trying to reach normal age milestones or just trying to live their lives, though the person carrying out the acts may not mean to cause harm.

If you’re consistently treated like a child, you’ll miss out on things that other people your age are experiencing. Some examples of this might include a parent not letting their disabled child socialize on their own for fear of them getting hurt (physically or mentally) or not allowing them to get a job for fear of them being unable to handle their own finances. If infantilization continues to occur over long periods of time, it’s possible for the victim to start internalizing infantilization and questioning themselves, believing that they’re incapable of doing things deemed normal for their age group. It can also be dehumanizing: it undermines a person’s abilities and worth, even when they know they’re different and more capable than how they’re being treated. This can be seen if a caretaker dismisses opinions and ideas and overrides them with their own, automatically makes decisions in the person’s interest, or exercises control over relationships and sexual exploration.

Being a victim of infantilization in any form isn’t a great feeling and can lead to sadness, anger, depression, and more. It can seem nearly impossible to get away from, even outside the home, and can make you feel like your disability is the only thing people notice about you. But that’s always far from the truth.

We are worth far more than our disabilities, and we don’t deserve to be seen as less than or miss out on facets of life because of them.

Relationships and sex are topics that many parents and their children disagree on, but when you’re a child with a disability, that conflict can be far more challenging.

Depending on your disability, everything involving sex may require help – and if your parent is your primary caregiver, bringing up these topics (let alone asking for assistance with them) is not an easy task. For example, asking for help with something like masturbation can invoke a range of emotions. Your caretaker might be uncomfortable even hearing the word masturbation, and if so, they’ll likely refuse to help you. They may even ask you not to bring the topic up again or become upset or angry that you brought it up in the first place.

Here are a few aspects of sex you might need assistance with (this list is by no means comprehensive as different people have different needs):
  • Preparing your body before (i.e. shaving if desired) and after (i.e. cleaning yourself, using the bathroom) sexual activity
  • Getting undressed and dressed (whether in regard to your everyday wear or lingerie/other types of sexy clothing)
  • Physically accessing toys to aid in masturbation and/or other sexual activities
  • Positioning so you’re as comfortable as possible

Some may find that working around caregivers when it comes to issues of sexuality is their better option. Like any solution, it has its pros and cons. For example, it can mean more time and space to be sexual with your partner(s) when your caregiver isn’t around, but can also create safety issues if you need more nuanced care, or care your partner doesn’t have the ability to provide.

Abstaining from sex is another solution, but if you don’t actually want to be celibate, that choice may make you pretty miserable.

It is possible to have a healthy and fulfilling relationship and sex life as a disabled person with a parent caregiver (or any other kind of caregiver), whichever of these routes you decide to pursue.

If you don’t already have that kind of relationship, changing that can start with communication. You may want to bring in a social worker or nurse, close friend, or your partner, if that’s something you’re comfortable with. A social worker or nurse will bring in professional expertise and can help guide you before, during, and after communication, while a close friend or partner will support you with your wants and feelings in mind. Having another person on your side who isn’t directly involved can be an asset to you throughout this whole process.

You may want to begin a first conversation of many with your caregiver by explaining that you, as a disabled person, are pretty similar to every other nondisabled person in terms of what you want and deserve out of life, including sex. You might also want to mention that you’re limited in certain ways, but not in others, and that you’re fully capable of reaching towards targets that you know are attainable. You can go into more detail by explaining that part of the life you envision for yourself is one that includes a healthy and fulfilling sex life, and elaborate as necessary and as you want to.

For some, a conversation like this will go fairly smoothly. For others, it will not. The reasons will vary, however, for some caregivers, it may take time for acceptance to occur.

Continued conversations where you advocate for yourself, and continue to explain your wants will usually chip away at the infantilization you may or may not be experiencing, and your parent caregiver will hopefully start coming to the realizations you have. Introducing articles and other media or information about disability and sexuality, in addition to conversation, can be an asset to provide perspective, information and education parents or other caregivers may not have, diminish infantilization, show that there are like-minded people out there, and prove that you did your research.

Movies can be a good way to start conversations about all of this. Here are a few good films that address disability and sexuality realistically and well, and some include caretakers:

  • Take A Look At This Heart (2019)
  • The Sessions (2012)
  • Passion Fish (1992)
  • Benny and Joon (1993)
  • The Fault in Our Stars (2014)
  • You’re Not You (2014)
  • The Whole Picture (2011)

FYI: While these films may represent aspects of disability, some of them are not completely accurate, as the characters in them portrayed are not played by actors with said disabilities. We still decided to share them, though, since the content of them can be beneficial to disabled people.

In the best case scenario, you and your caretaker will work together to figure out what they can do to appropriately assist you in achieving your wants when it comes to your sex life, whether they be physical, emotional, or whatever else.

Just because your caretaker agrees to help you shouldn’t mean that you give up your agency – both of you must be communicative at all stages so you can work together successfully. Don’t be afraid to be assertive with your wants or to ask questions if you’re unsure. If you’re nervous about coming up with the right words or just want to share extra resources with your caregiver for now, see the list below, where you can find helpful articles and tips, some of which are parent friendly.

If you’re still struggling with a parent caregiver who is averse to all of these options, the next best thing may be coming to a compromise. While compromises can be beneficial, not getting exactly what you want is frustrating, and it’s okay to be upset or angry about it. Maybe you’ll feel like you’re not getting anywhere, but since a compromise requires both parties to give something up and gain something in return, you are accomplishing what you set out to do, just on a smaller scale than anticipated.

For instance, you can compromise by getting a bedroom door lock that can be opened by your caregiver in case of an emergency, but also make an agreement that your caregiver will knock before entering when it is locked. Another compromise option might be a check-in via texting or other technology, where you let your caregiver know you’re okay after a predetermined time, like every 15 minutes. Other ideas to keep in mind might be verbal check-ins, agreeing to have a partner over when your caregiver is not present, or letting your caregiver get to know your partner so they’ll be assured you’re safe. If these options still present problems, brainstorming with your partner(s) may help you come up with other solutions, like a different place to go separate from where your caregiver is. Having your sexual partner(s) assist you in place of your caregiver(s) might be an even better option, as you’ll have more time alone together and the freedom to experiment, if the two of you are comfortable doing so.

There are, unfortunately, situations where not even a compromise can be reached, and it’s important to keep this possibility in the back of your mind. If this does end up occurring, remember that you’re not alone in feeling trapped. Being angry and/or upset are valid emotions in this situation, and it’s perfectly okay to express them. Lacking autonomy you want is painful.

With all that said, there is a clear difference between having sexual assistance and being a victim of sexual abuse/incest. Here’s an example: if your parent caregiver agrees to help you prepare for sex by taking off your clothes, they should only be doing so when you direct them to in that context. Doing so outside of this situation (or a care context) without your verbal consent is sexual abuse. Your caregiver also shouldn’t be present (i.e. watching or joining in) during the sexual activities, nor should they be touching your genitals without your consent (i.e. preparing for sex or cleaning up). Other things that would be inappropriate for a parent caregiver to do might be: directly masturbating you, taking off their clothes in front of you, or coercing or forcing you to do sexual acts to them or to you.

There are also a difference between being denied by a caregiver and being a victim of abuse. If your opinions and voice are constantly dismissed by your caregiver—whether in terms of sex or not—even after you’ve had the infantilization talk, or you feel that you’re being emotionally manipulated, it’s probable that you’re being emotionally abused. If you’re unsure if you’re being abused, check out this article for a more in-depth look at the different types of abuse. If you are a victim of caregiver abuse or fear you will become one, refer to Scarleteen’s Safety Plan on how to safely break away from your abuser and The National Domestic Violence Hotline’s resource for people with disabilities.

Waiting things out is hard, but there are ways to make it easier. For example, if you’re in a relationship, there are many other ways to be intimate besides sex. This can include things like cuddling, hand holding, touching parts of the body that aren’t genitals, going on dates, and talking about topics that you both are passionate about. If you’re not in a relationship (or if you are), investing your time and energy into something you’re passionate about can give you something exciting to make plans for, whether it be a hobby, job, or something else altogether. Getting involved can also introduce you to a community, where you’ll be able to meet people and maybe people who are dealing with the same kinds of things you are.

If you’re looking to make some changes in your life rather than waiting, you might want to start by evaluating your own independence and figuring how much caregiving help you need. There are assistive devices and tools that may give you more independence or reduce the amount of caregiving you currently need. You can try talking with your caregiver about how you’d like more independence and if it works out, brainstorm together on how to make that possible.

Navigating sex with a parent caregiver is hard and it’s not for everyone. If you feel like introducing the subject and/or asking for help is out of the question, that’s completely natural and understandable. If you’re still vying for some form of independence, even just thinking about using your voice (or pen!) to explain that being disabled doesn’t make you unable to live your best life is a step towards freedom.

Some more resources:

Video Resources:

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