Tell Them You Love Me: The entanglement of disability & consent
Tell Them You Love Me has been on my radar to watch for quite some time not only because I’m a sucker for documentaries but because one of the themes it explores is something I’m very passionate about, consent. Specifically consent among adults with disabilities. Aside from that, I knew nothing about the documentary or the people who it revolves around. But since it was on my list of topic ideas, I gave it watch over the weekend and I was right. This is exactly the kind of media that I want to consume and report back on but this one is different than all the others so far. There aren’t laughs or fun facts to share with you.
In fact, after I watched it I almost talked myself right out of making a post about it because this documentary made it abundantly clear how green I am in this space. It was as if the nuance on discussions around disability and consent became huge, and neon pink and it was no longer nuanced at all. I became very aware that I lack the education, knowledge and experience to have an informed opinion on what happened in that documentary and I got really afraid of trying to write about it and then getting it wrong. I am mindful of how getting something like this wrong, could have larger implications once I am working in this space.
But I’m not working in this space. Yet.
And one of my main reasons for wanting to start writing again was so that I could better retain the information that I’m learning….sooooo…..I am going to write about it. And I am going to lean on the fact that I am still learning and hope that comes across very clearly.
At the start Tell Them You Love Me is about an adult man named Derrick who has cerebral palsy, is non-verbal, has historically scored low on IQ tests, and is cared for by his mother and brother.
While in college Derek’s brother John met Anna Stubblefield, who was the instructor of a disabilities studies class, where he learned about Facilitated Communication (FC). I hadn’t heard of FC before, and while it was being introduced in the documentary I was blown away at what I was seeing. Facilitators were able to use keyboards to help non-verbal people have a voice of their own. How revolutionary! I made a note to myself to look into how Facilitated Communication is currently being used in sexual situations for non-verbal adults.
Researchers were now able to learn about the hopes and desires of non-verbal people, and with the support of FC, were starting to rethink their previous thoughts about what these people were capable of in terms of their cognition and independence. Anna, the director of Philosophy at Rutgers, was someone who had spent her entire live learning about people with disabilities. She watched her mother work with blind children professionally, and had a general curiosity about disabilities as a child, even learning braille just for fun. The term “well respected” seems appropriate here because she was someone who had been immersed in disability, the rights of disabled people, and the role of caregivers. Anna was a champion for people with disabilities, spending her life helping to improve theirs. John talked to Anna after class and together they agreed she would work with Derrick to explore his abilities through FC.
In the “promos” for Facilitated Communication they show a young woman, Sue Rubin, who is typing out her responses unassisted on a keyboard. Later in the documentary they show lots of old clips of people hunting and pecking away on keyboards without assistance but it quickly becomes apparent that a large amount of people using FC need some kind of arm/elbow support in order to push the keys on the keyboard. So the FC facilitators hold their arms or hands for stability and then the person they are helping can direct their arms and then fingers to the key they want. So far, so good. Not only can non-verbal people like Derrick now communicate with the world, but there are lots of “Derricks” that are now not only able to show that they have vibrant personalities but they can also showcase their intelligence. Derrick, according to Anna, had the capacity to do “high-level work”, including college school work. Despite 20+ years of doctors stating his mental capacity was that of a toddler at best, Derrick was now enrolled at Rutgers.
Derek and Anna spent a lot of time together, having conversations through the Neo, which was the device/keyboard that Derek used to communicate. They grew closer as they got to know each other and, in no surprise to anyone who has seen a trailer for the documentary, they fell in love. To complicate this situation, Anna was already married and a mother of two.
Anna and Derek begin to make plans about their future together. They decide he should move out of his mom’s house into an assisted living community. They decide that he will enroll in college because his intelligence is undeniable. They decide she will leave her husband. They decide to progress their romance into a physical relationship.
Now this is the point in the documentary where I expected it to go in the direction of whether or not adults with severe developmental disabilities could consent to romantic love and intimacy. I was ready for that, and weirdly looking forward to a story of triumph around this topic. I naively wanted a real-life, highly publicized account to showcase that people with developmental disabilities can have sex lives too.
This was not that. Not even close. Not even a little bit. Not even at all.
Instead the documentary begins to share the rocky science that FC was built on.
Oh no.
Then it shared one doctor’s research on FC which showed that it simply does not work. And frequently the person attempting to communicate through the keyboard, was being heavily influenced by the facilitator, who was often subconsciously (and consciously) moving the hands and fingers to keys to spell out words and phrases.
Well shit.
And it didn’t stop there. There is an absolute slew of false accusations of sexual abuse toward parents and caretakers of people with disabilities who were using FC.
I audibly said, “oh no” when this part came up. Immediately felt regret for my previous enthusiasm about using FC in sexual situations. Did I let my enthusiasm for consent do that thing where I decided FC is great for this community because what would be helpful is to speak/type, and since speaking/typing is “normal” it therefore makes everything easier for the rest of us? Maybe I did that. Maybe I just really want people who want to have sex to be able to share their consent. Maybe it’s both. I’m still learning here.
There are A LOT of things that Anna shared about Derrick, that she said came directly from him, including things like what he wants to be called and his favorite type of music. Anna is convinced she knows Derrick better than anyone, including his family.
His family thinks otherwise and after finding out Derrick and Anna have engaged in intercourse, they begin to severe the relationship with Anna. It’s important to note here that Anna is a white woman, and Derrick and his family are Black. The documentary touches heavily on race and the potential role it played in this whole situation and whether or not Anna was swooping in with a white savior complex and giving Derrick the life that she though he needed.
After cutting off contact with Anna, Derrick’s mother works with the police to record a conversation with Anna where she admits to having intercourse with Derrick multiple times. Anna is soon charged and found guilty of two counts of first-degree aggravated sexual assault. She later appeals, wins, and gets released on time served through a plea for a lesser charge.
At the end of the documentary we’re left with a lot of questions. Did Anna really believe that she shared this mutual relationship with Derek? Was she consciously taking advantage of him? Has Anna seen the discredited science on FC and does she have a response to it? Is it possible that Derrick was able to comprehend the relationship? Did he consent? And many more.
For the purposes of my research, I wanted to understand a little more about the dynamics of adults with disabilities and the role their parents play in their mature relationships.
I was prepared to inflate my belief that adults with disabilities are still adults, even if their parents can’t see it. Sometimes parents just can’t let their kids grow up, ya know? There is even a line in the documentary where Anna says something similar to this that I actually agree with:
If you’re in a giving care frame of mind, you don’t see the person you’re supporting as somebody who’s in a position to make their own decisions, who has their own ideas about how they want things done. You wanna give them some control to develop into a person who has a good sense of themselves. So that part is a harder adjustment for parents or teachers who’ve been in a taking care of you mode.
Before the film unveiled the doubts around FC, I was hopeful that this tool could help those who want to gain decision-making independence from their parents to be able to do that. There are success stories, there ARE people who have had this level of independence gained, but the use of Facilitated Communication has been rejected by the American Psychological Association, The American Speech-Language Hearing Association and several other prominent organizations.
So this was not a magical tool. Instead I’m left contemplating what consent looks like for non-verbal adults and what role parents play in their developmentally disabled adult children’s ability to consent. What happens when a parent won’t let their kid explore what it means to be a sexual being? And what protections are in place for their adult child if they DO support their kid exploring in this way? For now, I just don’t know.