One sixty-eight. My heart was racing when the paramedics took me to the emergency room early December. One by one, triage nurses and doctors came to take my pulse, a small but firm woman began tugging at my clothes and I explained my medical history to the attending.
“Oh... okay,” I said as she silently stripped me. Before long I was sitting there in my underwear calmly telling my life story in front of five men.
“Let’s give you some space,” the attending finally said before closing the curtain as the nurse stuck EKG stickers on my chest and down my legs. She slipped me into a gown.
I never felt uncomfortable, only slightly annoyed that the height of my 2020 love life was a midnight ER trip.
What the visibly uncomfortable men couldn’t have known is that my body has never been my own. In every medical circle, it is in the gaze of others who pinch my skin, take notes and analyze every aspect of my body. It is always up for debate but I have never felt a part of the conversation, just the centre of it.
I was 12 the first time someone suggested I donate my body to science. They said it could be useful.
I decided around the same age that the only logical response to living in this body was to accept that nobody would ever love me. I was neutral toward my body — seeing it as only a vessel to keep me alive with no aspect of pleasure or desire. I couldn’t see how anyone could love me if I could only be apathetic at best toward my limbs.
Frankly, I wasn’t sure I would live long enough to grow up and get a white picket fence and a family. I now know that disabled people do not have marriage equality, that the low marriage statistic is a reflection of disabled people being unable to marry as a result of losing benefits and thus being unable to afford to stay alive.
But as I saw my friends get into serious relationships, I longed for someone to be by my side. I thought I would need to convince people to love me since my body wouldn’t win them over. I became their best friend and then they got really pretty girlfriends. They were kind and looked like sunshine.
I didn’t blame them for dating the boys I really, really liked, but it made me feel worthless to know that I was never enough for them.
For Hannah Facknitz, a second-year history master’s student, it’s the soft-spoken ableism that is harder to swallow than the constant wave of blatant ‘What is wrong with you?’ messages.
Facknitz developed lupus, an autoimmune disorder that affects her heart, lungs, brain, kidneys and joints, but has been in remission for five years. Today, she is most impacted by accompanying diagnoses of fibromyalgia, chronic fatigue syndrome and unpleasant side effects to her medication. She also has complex-PTSD and OCD.
In 2014, she was 23 the first time she realized that people may not like her because she is disabled. She was talking to a guy on OkCupid that she really liked. He was attractive and they were getting along great. While she was disabled, she looked rather able-bodied and had not yet explored what it means to be disabled on a social level, since she passed for able-bodied rather easily.
But she had just found out she couldn’t have biological children.
“I really thought about myself in terms of lack and loss. And I had also found out that I can’t have children, which was a really big emotional blow,” she said.
They kept talking and all seemed well, until a few days later, he told her that having children was important to him so he didn’t think it would work between the two of them. She thought it was a kind and respectful way to let her know and appreciated that he didn’t want to lead her on.
“But I was devastated and furious. I was so upset, I was so angry,” she said.
Though she felt the conversation was not “blatant ableism,” that moment marked a change in her approach to dating.
“It was like ... ‘Oh my God, my life is different now and my romantic life is going to change’ ... and not in the way that I had predicted.”
She understands that self-awareness in recognizing one’s priorities, or more so limitations, is important but hopes that people don’t go further to wrestle with this internalized ableism.
One of the first interactions people have with Facknitz is asking her to explain her diagnosis, step by step. She would much rather they just search it up.
“That is almost always followed by an ‘Oh, I’m so sorry.’ “And it’s not an ‘I’m so sorry for making you perform this labour of explaining a basic illness to me, the basics of your disability to me.’ It’s ‘I’m so sorry that you’re disabled and are sick.’”
She said it is a test of patience to put up with the constant cycle of invasive and ableist remarks.
“I think ableism is pervasive and I just need to put up with this little bit of ableism until I find someone I actually like, and then I can educate them and make them stop doing these things. But then I will have an interaction with someone who doesn’t do any of those things, and I’m like, ‘Oh I don’t actually have to put up with this.’”
Facknitz wants her potential suitors to know she loves watching Studio Ghibli movies, knitting, crocheting and used to be an artist, instead of explaining the fundamentals of how her body works.
“It is kind of exhausting and not something able-bodied people have to do,” she said.
But often, they never make it to the crocheting stage.
Facknitz doesn’t allow herself to get excited about a match until the diagnosis conversation has been had. With COVID-19, it may be a natural lead into disclosure. Even though Facknitz does have disability justice noted as important on their online dating profile, it doesn’t make it any easier to have that conversation.
“So many people are still asking to get coffee. First of all, what is wrong with you? There is a pandemic and Dr. Bonnie Henry told us to go home. No, I am not getting coffee with you.
“Second, I always feel like I have to justify it when I’m high risk. I can’t meet you until I’m vaccinated.”
That’s when the conversation turns to asking why she is high risk. It is a constant circle.
Though the disappointment has been normalized, it’s still hard for Facknitz.
“If I am in a long-term relationship, and heteronormativity tells us we should be in [a] monogamous relationship for the rest of our lives, your partner is going to become disabled at some point. You’re going to become disabled at some point. So, actually being a good partner to a disabled person is sort of the bare minimum for a healthy relationship.”
A 2019 Dr. Phil episode titled “I Swiped Right on My Quadriplegic Boyfriend” sparked outrage after Phil told an inter-abled couple their issues were because the disabled man was a burden on his partner.
“You’re a young, single, attractive female. Out of all the people that you can choose, why choose someone in a wheelchair?” said Phil.
“We make each other happy,” Harley said in justifying her interest in Bailey, a C5/C6 quadriplegic.
Phil told them, “100 out of 100 relationships that involve caregiving fail.”
He later polled the audience and asked how many of them would swipe right on someone in a wheelchair. Fifty-eight per cent said they never would and only 29 per cent said they would swipe right on someone who required full-time caregiving.
This episode sparked outrage among the disabled community. Some couples spoke to the lack of resources for adequate caregiving like in Harley and Bailey’s case, how caregiving is as normal as dish duty in their relationships and how disabled people are deserving of and experience love daily.
This birthed the viral hashtag #100OutOf100 where inter-abled couples shared their love stories.
Facknitz said this anger keeps her safe and able to maintain the progress she has made in loving her body.
“It’s like having a slipcover on the sofa. If you spill something on the slipcover, you can rip it off quickly and it doesn’t stain the sofa underneath,” she said. “My anger protects me in a lot of ways because it’s my reaction that tells me about the wrongness in the world. [It] allows me to not allow it to dig its roots into me and make home there ... There are more important things that I want to have make a home in my body and my mind and my heart.
“I also feel really sorry for those people because they’re going to be disabled one day and the fact that they can’t love a disabled person now means that they likely won’t be able to love themselves when they become disabled. That’s such a tragedy.”
Leah Cook thrives having a neurodivergent partner. The first-year land and food systems student is also neurodivergent and struggles to understand social cues. This makes forging a relationship even more challenging as there is virtually no positive representation of Queer disabled couples in media for Cook to look toward.
Cook met her partner in Grade 9. They were good friends for a few years before realizing that there may be more to their relationship and made things official this past summer.
“It definitely has been really nice to have somebody that always [has] my back and that understands how my brain works, especially during COVID. A lot of my other support networks have disappeared,” she said.
Cook grew up with messages from her family that her panic attacks or sensory meltdowns would impede her adult life. They would tell her she needed to grow out of them to be happy and successful in life, specifically with regard to school and relationships.
“I ended up having a panic attack in front of my partner. They didn’t shy away or [were] weird or anything, they just hugged me and asked how they could help me through this. That was a pretty big moment for me to [realize] I can be myself and be in a relationship.”
Both Facknitz and Cook stressed that their disabilities are an integral part of who they are and far from a bad thing. Because of this, it’s important to them that their disability is not treated like an aside, but rather an intrinsic part of who they are.
“It should be part of the relationship as well. Not ‘I love you and you also happen to have such and such.’ No, I love all of you,” said Cook.
Maybe loving a body we have spent a lifetime being told isn’t worthy of love is the ultimate destination, not a significant other.
“Self-acceptance and self-celebration is not a permanent thing. It’s something you have to choose every day,” said Facknitz.
For Facknitz, that also means only wearing fancy underwear as a constant reminder of her worth. Perhaps it’s alright that I might not have anyone to walk down the aisle to. Perhaps I have all the love I could ever need in friends who love me fiercely. Perhaps it’s alright to desire a partner while knowing I will live a full and meaningful life, regardless.
Facknitz wishes she knew that at 23.
“I had to build community first. I had to remember that I was whole first. And then I could say [that] I do deserve this kind of happiness because I already have these other kinds of happiness,” she said.
“I think of a romantic relationship as a beautiful extra that I want in my life and I want for myself, but it’s not my daily sustenance.”
This article is part of Autonomy, The Ubyssey’s 2021 sex issue. You can read more here.