What You Need to Know About Consent and Disability
The people entrusted to care for me need to understand and respect my boundaries.
Lia Kantrowitz / Shutterstock
This article originally appeared on VICE US.
Because of the nature of my disability, I require a lot of personal touching—dressing, brushing teeth, and other types of physical contact as part of my day-to-day routine. Without consistent communication, lines can easily be blurred and crossed by a care aid in the blink of an eye. I have cerebral palsy and live independently, so I hire a day staff to facilitate my daily tasks and rely on an agency to hire my night staff. Most of the time it's great, but recently I was sexually abused—it happened twice—by care aids.
One of these instances occurred when I was waiting for someone from my day staff to arrive; I needed to go to the bathroom so I called the night staff on duty to assist me. She came into my room and, as usual, took my penis into her hand in preparation for the urinal. This time, though, upon seeing my erection, she gripped my dick and vigorously pumped her fist around it. I tried shaking her hand off and telling her to stop, but she either didn’t understand or was willfully ignoring me, and I was brought to the brink of orgasm.
When I have to go the bathroom, getting off is the last thing on my mind. I was, in no way, turned on. I assumed that she thought she was doing me a favor—that I might enjoy it. I clearly didn’t.
After I have a breach of trust with someone, it destroys the confidence I’ve invested in that person—and being assaulted is a huge breach of trust. I felt violated and unsafe.
Sometimes I get an erection during showering, when my personal support worker has to lather and rub around my genitalia, however the physical response is just that—an automatic response to touch—and does not denote amorous feelings for my caregiver. Physical arousal does not equate to consent—this is especially important to keep in mind when considering disabled people.
In 2014, I had a care aid named Sarah who would take me swimming at my local rec center on Thursday nights. One evening, after showering and transferring me to the dressing table, she proceeded to shower herself. Unabashedly, she lathered her body, and I instinctively turned away, to give her privacy. A few moments later, I heard Sarah say, “Why aren’t you looking at me, Spencer?”
Did Sarah assume, that because my body reacted to her bathing me, that I wanted her in that moment? And if she did, why did she assume it?
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Communication is important, especially in a care aid-employer relationship, because you may have to rely on them touching you in intimate ways to help facilitate the start of your day. Surely, outside of this type of relationship, someone soaping up your dick would be interpreted as a sexual situation—that’s why verbal consent is that much more important to confirm when engaging with a person living with disabilities. As many as 83 percent of developmentally disabled girls and women and 32 percent of developmentally disabled boys and men have experienced sexual assault, according to The National Center on Domestic and Sexual Violence.
Living independently is something I’ve always wanted to do, so feeling like I can’t trust the people helping me do it is really disturbing. I wonder, after these two horrible experiences of assault, if I made the right choice.
I am thankful for the people who have helped me live independently so in many ways it's challenging for me to write this; I’m not at all criticizing the entire system of at-home care. I do, however, feel that this system has its flaws and they need to be addressed. When I was sexually abused, I reported it, but not everyone in my situation can or would. It's similar to any situation where someone is sexually abused—the person who was violated may feel fear, shame, or guilt about it.
As an adult man in his mid-20s who lives with a disability, navigating my own identity can be challenging enough. Adding “survivor of sexual assault and trauma,” to that identity only makes it more complex. Expressing myself sexually is very empowering and contributes to my identity as a man—and not just a man with a disability. Because my care workers are often handling me in vulnerable and intimate situations, it’s crucial for me to establish—and for them to respect—the difference in the physical contact I have with my them and the physical contact I have with the escort I see.
The language of consent is what allows me to do just that, and when my consent is not properly attained or ignored entirely, that difference becomes far more difficult to navigate internally. As in other articles I’ve written, I’ve found ways to cope with my vulnerability, but this feels intrinsically different. Defending myself against people who would take physical advantage of me is nearly impossible, so the people entrusted to care for the me need to understand and respect my boundaries. It's the only way I can protect the independence I've worked so hard to achieve and maintain.