When I was diagnosed with fibromyalgia at the age of 29, the most consuming feeling I experienced was relief. It had taken years of seeing doctors and specialists, my husband always beside me, to get to the answer. For disabled people, it’s possible that our autonomy is even more precious to us than it is to able-bodied folks; as people with chronic illnesses or disabilities, our independence is so easily taken from us. The world as a whole is not always accessible to us, and that inaccessibility often translates to disabled people being punished for simply existing. As a result, often, we are labeled or considered “burdens.” We are infantilized and patronized—both by those who ridicule us and those who claim to be our allies—and instead of seeing us as equals or even leaders in our respective communities, abled people regularly view those with disabilities as a group that needs to be policed and regulated.
If our disability proves too “messy” or at all complicated for the people in our lives, we can be easily discarded. And that discarding is justified within the mainstream, especially as article after article promotes the idea that disabled people are a burden. That mentality was once again reaffirmed in a recent article in the New York Times magazine. In the June 9 edition of The Ethicist, a weekly advice column by writer Kwame Anthony Appiah, one reader sought advice about their short-term relationship. The reader explained that the person they had been dating disclosed his diagnosis of Crohn’s disease, a chronic bowel ailment that can cause life-threatening complications if not cared for correctly. Knowing that the illness comes with its own set of complications, the reader asked if they would be in the wrong to end the relationship. They explained that they wanted to “shield [themselves] from the pain” of a future breakup if the partner’s illness became too much to handle.
Essentially, the reader wanted permission to dump someone with a disability just because of their disability. And they wanted it from the NYT. In his response, Appiah elected to largely absolve the reader of their guilt: “Once someone is truly a friend or a lover, you have all kinds of responsibilities to them that you didn’t have before,” he wrote. “So for example, it would be deplorable to abandon a spouse because he or she has become seriously ill. That’s part of what’s meant by saying a marriage is to endure ‘in sickness and in health.’” “Of course,” Appiah continued, “this can turn out to be a promise someone can’t keep. But precisely because a partnership is for the long term, you can appropriately consider what your lives together would be like before you enter into one.” This advice seems to suggest that the only reason someone would stay married to a disabled person is out of obligation.
But, the “in sickness and in health” adage isn’t meant to trap us in marriage. Its purpose is to suggest that marriage is a commitment with its own trials and celebrations. A strongly bonded couple will rise to those challenges and grow more united. Poor health and disability might be one of the trials a marriage faces, but again, these challenges aren’t a form of punishment. Because disabled people aren’t punishments. “Committing to this person may be committing to a life as a caregiver,” Appiah wrote. “You don’t owe it to anyone to accept that burden.” With these words, this advice columnist for a legacy United States publication excuses and promotes ableism against both this specific person and other disabled people potentially harmed by this advice. This is far from the first time that the New York Times has failed the disabled community: In December 2019, the newspaper published a story about a murder-suicide that turned it into a love story rather than accurately labling the tragedy an act of violence against a disabled woman.
“Sweethearts Forever. Then Came Alzheimer’s, Murder and Suicide” details the tragic death of Alma, a woman diagnosed with Alzheimer’s, at the hands of her lifelong partner, Richard, who killed her and then killed himself. The story and its supporters painted the crime as an act of mercy and love, with readers, especially on social media, swooning over the complicated nature of loving a disabled person. Disability activists instantly pushed back against the narrative of this story. In a roundtable of disability activists held by Bitch, this story and the media’s involvement in reporting ableist narratives were examined as the threat that they are. “Disabled people were once again placed in the unfair position [of having] to call this ableist shit out and explain why this kind of reporting and language is harmful,” disability activist and podcaster Alice Wong explained. “These are the kinds of attitudes that perpetuate murder, abuse, and violence.”
With their extensive platforms and millions of readers, top publications should have fighting ableism at the top of their minds. It’s the bare minimum we deserve from major media.
In the same roundtable, Cade Leebron, a disabled writer, shared how hurtful these accounts can be—when promoted not only by the initial source but also by the many who then feel justified in echoing ableist sentiments. “I didn’t want some stranger online telling me that murdering a disabled person was the correct or loving choice since the NYT had already told me that,” Leebron said. “The implicit message [is] that the nondisabled person’s good intentions will be privileged above the disabled person’s literal life and death.” Due to pushback about the most recent ableist story he’d written, Appiah supplied an addendum to provide more context and further justify his response. But the damage has already been done. Yet another story dehumanizing disabled people has been published and, no doubt, there will be more. In the early days of my disease, both before and after my diagnosis, I felt like a burden, especially in romantic relationships.
Ableism is everywhere in our portrayals of love and romance: In 2018, Melissa Hung wrote for HuffPost that movies portray people with disabilities in harmful ways time and time again, especially when “getting laid” and the way that disabled peoples’ romantic relationships are portrayed in pop culture are deeply ableist. There were times, driven delirious with pain and depression, that I lashed out at my husband, telling him to leave me, to escape. During these times, it wasn’t my husband’s “goodness” that kept him around. He wasn’t there “in spite of” my disability or because he felt some sense of obligation. He wasn’t even there because he felt he could “fix” me. He stayed with me because he values me beyond my formerly able body. He sees me as a whole person. In a 2019 Refinery29 piece, Keah Brown wrote, “I know now that people with disabilities can be and are romantically loved, and I have to remember that when I feel myself giving up or getting down on myself.”
My disability is part of the love and respect my husband has for me, and does not lessen or add to that love but simply exists as part of me. More importantly, my humanity doesn’t depend on him loving me, a disabled person. I have my own autonomy and my own stories to tell. That’s the way we disabled people should be represented: as complex, whole, and above all, worthy. In his own addendum, Appiah notes, “People with chronic conditions often struggle against the terrible misperception that they are no more than their disability; and talk of the burdens of care, it’s clear, can ring with the noxious suggestion that people with disabilities are themselves burdens.” And this is true. But it’s unfortunate that these more thoughtful takes often come in the form of damage control, and as apologies. With their extensive platforms and millions of readers, these top publications should have fighting ableism at the top of their minds. It’s the bare minimum we deserve from major media.