The profoundly ignorant questions I get asked about my disabled husband
“So, how much money do you get?” the salesman suddenly asked me from the passenger seat.
“Huh?” I was startled, trying to focus on the road as I tentatively test-drove the car I was considering, but on some level, I knew where this was going.
“The check you get for being with him,” he said knowingly, nodding towards my husband — a quadriplegic wheelchair user — waiting in front of the dealership. My brain short-circuited for a second and my mouth ran a little dry, as it always does during these lines of questioning. “Here goes,” I thought. Patiently (I tried, at least), I told him that wasn’t how it worked. My passenger looked shocked. “You mean the government doesn’t even pay you because you’re with him and you take care of him?” he pried, looking suspicious now. “You don’t get any money?”
Flustered, I explained that we didn’t qualify for that and that not all disabled people get benefits. I wondered if I was going to have to give a rundown of SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance) right there in the car. My answer finally seemed to satisfy him, but I was still left shaken. I felt pressured to share details about my personal financial situation just to make the falling dominoes of invasive questions stop. It isn’t my duty to answer them, sure, but it is my duty to defend the people I love — and these kinds of questions automatically put me on the defense, even if that’s not the intent behind them.
For many disabled and interabled couples, ignorant and invasive questions are familiar refrains against the backdrop of our everyday lives.
Questions like these are nothing new for couples in which one or both partners are disabled, especially if one partner is more visibly disabled than the other. (I have fibromyalgia and OCD.) In addition to questions about money, we’ve also been asked by strangers about the intricacies of how we conceived two-year-old daughter, if I’d rather be with a guy who doesn’t use a wheelchair, and of course, the ever-invasive “Can you have sex?” Once people know about my disabilities, meanwhile, they generally ask how my husband copes with it or if he was aware I was mentally ill before we married.
For many disabled and interabled couples, ignorant and invasive questions are familiar refrains against the backdrop of our everyday lives. And while they may seem like they’re merely gauche and annoying, they belie deeper, often destructive assumptions about how disabled people live and love.
Sydney Chasteen is a blogger and activist from Indiana and a wheelchair user with spina bifida. She has been married to Nathan, an Autistic man, for five years (they’ve been together for 11). They, too, struggle with invasive questions about their relationship, particularly with respect to their finances. “People think that — because we are financially limited because of my government assistance — I'm a burden on Nathan. They don't realize that it's the system that's a burden. I'm just his wife.”
Journalist and activist S.E. Smith, who explores disability identity in their work, agrees that presumptuous financial questions are particularly common for partnered disabled people: “I definitely know disabled people who have been warned that someone is using them for their money, which is laughable if you know anything about disability benefits,” says Smith. “Some people actually do view disabled people as targets for physical, sexual, and financial abuse, but the assumption that anyone in a relationship with a disabled person is there for exploitative purposes is really disturbing.”
These assumptions are challenging to navigate, Chasteen says, in part because it’s difficult to respond without coming across as aggressive or rude. “In the moment, I'm never sure how to address these things, usually because I don't want to start anything by saying my piece. But it's insulting to have all these things assumed about your marriage.”
London-based Candy Parfitt, 29, and her partner Max Stainton, 28, know the frustration of these questions all to well. Stainton has cerebral palsy and is a quadriplegic wheelchair user, while Parfitt has Ehlers-Danlos syndrome (which refers to a group of connective tissue disorders). Many people in their lives assume that Parfitt can do more than she is able to, although she explains that she is actually more “medically fragile” than Stainton.
With a three-year relationship under their belt, Stainton and Parfitt have encountered nearly every possible assumption under the sun. “From strangers, the most common assumption is simply that we are not a couple,” says Parfitt. “We have had every assumption, from me being a paid carer or just a friend to people who assume I am his sister.”
For Parfitt, this kind of erasure of sexual identity in disabled people shows up most when she and Stainton are openly affectionate. “Our response to subtle ableist sentiment is to be loud and proud about our situation, to [have] public displays of affection, to be cute and sexy and silly, and really to just provide the world with the representation that we want to see,” Parfitt says, pushing back against stereotypically tragic portrayals of disability and romance.
The infantilization and erasure of sexuality projected upon disabled individuals is based on the underlying idea that disabled people are inherently nonsexual beings, as activists like author Ben Mattlin and host of the podcast Disability After Dark, Andrew Gurza, have pointed out. And it goes further than just being insulting. Because disabled people are often read as desexualized or as incapable of having any particular sexual identity, we can also lose out on crucial community and clinical resources. Denying disabled people’s sexuality can in turn deny them access to essential healthcare, such as cervical cancer screenings, reproductive care, and STI prevention counseling and testing.
Indeed, Parfitt and Chasteen say that, despite the pain of erasure and discrimination, some aspects of everyday ableism can bring them closer together as a unit. “One of the wonderful things about our relationship is that we are able to shoulder the burden of inaccessibility together,” Parfitt says. “We are able to advocate for one another, fight people who don’t want to bother letting us access things, and when we aren’t able to win, we are at least able to commiserate together.”
Still, misconceptions about disabled couples — whether they’re about sexuality, financial status, or our ability to function as a family unit — add inject an underlying sense of anxiety and uncertainty into people’s lives. When my husband leaves the house with our daughter alone, do I have to worry that someone will think I’m neglecting her by “allowing” her own father to take care of her? If I’m not helping him do something because of my own pain or because he’s got it handled, should we be concerned that someone will assume I’m neglecting him, even though he lived alone for years while he was single? It’s the undercurrent of questions like these that can make some disabled people feel that even being in a romantic relationship is a liability or a risk.
I don’t always mind questions about my relationship. It’s a way for people to learn more about identities and lived realities they haven’t encountered. But I wish that when people asked about disability and romance, they were less armed with ready-made assumptions, and more ready to listen to — and learn from — the answers.