Queer Eye: Stories Behind the Stories, Ep. 7
In the initial overview for my Queer Eye: Stories Behind the Stories post, I said that I was interested in the larger structural narratives that undergird the individual storyline. I’m going to violate that rule. This time, I turn my attention to the individual story for the larger narratives it relies upon. If you find yourself irritated with me, feel free to go back and watch this episode for the innuendo of Jennifer (the featured guest) and Antoni making kielbasa. Also, feel free to watch Jonathan Van Ness feel their fantasy as part of Sister Act.
Episode 7 features Jennifer Sweeney who understands herself as a “mom.” She takes care of her daughters (Ashley, Dana, & Rachel) and her husband (John), recently diagnosed with ALS. Amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig’s disease, is a neuro-muscular impairment that erodes the neurons that control voluntary muscles. Some with ALS have rapidly progressing versions; some do not. Jennifer has coped with her husband’s diagnosis by going into the work force. She was previously employed as a stay-at-home mom though I doubt she’d use the word “employed.” My point is that it is labor. She also coped by becoming John’s primary caretaker. One of the scenes in her introductory montage is her accessing his portacath (a small disc underneath his skin that leads to a catheter in his veins so he can receive intravenous or IV medications like chemotherapy). Her days consist of her getting up, going to work, cooking, and doing laundry. Then, it is wash, rinse, repeat.
There are two narratives at work: the supermom and the heroic caretaker. The so-called supermom relies on an ideal of a warm, loving, long-suffering, laboring mother whose only job is to take care of her children and others around her. This usually rests on a picture-perfect image of a mother — usually imaginary — that has done this work. In Jennifer’s mind, she is working toward June Cleaver and Donna Reed and working away from her own, she says standoffish, mother. Here’s the thing: those fantasies of motherhood do not account for several realities: 1) how much labor goes into that work; 2) how that ideal is only present for white women because white domestic bliss depends on women of color laboring outside the home; and 3) the real emotional needs of the person taking on all those duties. John, Jennifer’s husband, reveals this mindset most poignantly when he says “what she puts aside for others makes her a great mom.”
The heroic caretaker assumes that taking care of a disability is simultaneously awful and hard, and it is hard because it is awful. Caretakers aren’t seen as laborers; they’re seen as saints. I point out that they are laborers because that acknowledges their work and also reminds folks that sometimes caretaking is done without love and without a heartfelt commitment to the person requiring care. For a recent example of how this works, think of all the narratives of health care workers as heroes during COVID-19. These are sometimes the same people who mistreat patients and whose ableist behavior is excused because their job is so difficult and because they are thought to always know more than the disabled do about their own disabilities.
Also, this conferred sainthood requires that one think of the disabled as awful people having awful situations. In this understanding, disability itself is a problem and a loss and a badly dealt hand. And, in addition to that, the disabled person is a burden. As a result, the caretaker is heroic for having to put up with disability and put up with them. Their love — real or imagined — is supposedly an all-encompassing force that gives them the strength to cope. John tells us that a lot of folks take the vows — “in sickness and in health” — but Jennifer has had to live them and “it is a hard thing to put her through that.” His grief at that fact gives the corroborating evidence for this story because he, as the disabled person, identifies himself as the problem.
In this episode, both stories — the supermom and the heroic caretaker — are dependent on each other to her (and our) detriment. When Jennifer talks to Karamo about what constitutes a “mom” job, she says that she needs to do the chores like cooking and laundry because she does not want her children and spouse to know “they could survive without [her].” The reasons behind this thinking get crystallized in a conversation with Antoni where Jennifer says that she does not want to be like her mother who she considered somewhat standoffish.
The “I need to be needed” supermom mentality reinforces the heroic caretaker story. As a heroic caretaker, one is always needed and always praised for being needed. As a heroic caretaker, one abides in the mythos that the disabled person cannot survive without their care. Neither story understands mom-ing and caretaking as labor: labor that must be rested from, delegated, and appropriately rewarded. I emphasize “appropriately rewarded” because sainthood for either supermom or heroic caretaker is not an appropriate reward since both are based on sexist fantasies of women’s work. For those familiar, the supermom and the sainted caretaker are on the same side of the Madonna/whore coin.
Further, these narratives reproduce isolation. Child-rearing is a communal activity. At least, two of my friends who mother talk about their “Black Mommy Brigade” and “Black Mommas Group” where they receive support and accountability around their child-rearing. Sometimes that support is emotional (e.g., Black moms with a knowing shoulder to cry on when their children are being unfairly targeted/excluded; Black moms with a knowing ear to listen when another has a lot on their plate). Sometimes that support is material (e.g., Black moms strategizing about how to ensure their children aren’t unfairly targeted/excluded; Black moms taking another’s children when one has too much on their plate). My friends who are fathers also rely on each other and other neighborhood parents and caretakers to show their children what they cannot, be it sports, gardening, grilling, dance, art, fashion, grooming, et cetera. There is a reason that aunties, uncles, cousins, friends-of-the-family bring their talents to the table for the little ones. To be honest, communities help raise children whether one wants them to or not. Being clear about that dynamic of parenting and relying on it deliberately takes away the isolation of trying to do it all by oneself.
Disability also requires community. The heroic caretaker story relies on the idea that the caretaker and the caretakee are doing it all by themselves. John and Jennifer’s feelings about ALS are typical of folks who did not imagine a life with disability. Living in an ableist world, it can be a shock. Folks have to work through it. (This was Vilissa Thompson’s point in her twitter clapback regarding Wesley from Queer Eye Season 4.) It helps if you have people around you who are disability positive, who remind you that you are part of a new community.
Yes. The disabled constitute a community. We have a history. We have pride.
Jennifer does not have to inhabit the world as John’s heroic caretaker. John does not have to inhabit the world as a pitiable object. If they inhabited a disability community, they would know that their feelings about John’s diagnosis are rather typical. And, also, navigable. To be fair, I have been in support groups for my disabilities and those folks’ lack of disability positivity can be overwhelming because they too believe the lies of ableism. So, you have to choose wisely. To be clear, disability positivity is about creating space for the disability to be beautiful and difficult, a source of power and creativity, and, among other things, a source of history and pride. If it were up to me, they’d be in a multi-ability community where they felt empowered to voice their honest and difficult feelings, excited to go to bars, demand that other places be accessible, and envision a bold life lived with as much joy for-fucking-ever.
One additional small point, it would be great if Jennifer had some professional assistance, depending on the family’s needs, say a housekeeper or a nurse. I do not know their financial or health insurance situation. Here is where ableism is often structural: health insurance companies will refuse to shell out money for caretaking, forcing people to become heroic caretakers and putting pressure on relationships. A housekeeper is also a wonderful addition if you do not have folks who can help with chores. In Jennifer’s case, she has three adult children who are discussed as able-bodied, but if she did not, and if they had to move away for whatever reason, she should feel free to have someone help her create order out of chaos.
The Fivers really help Jennifer take time for herself. Jonathan gives her hairstyle and lashes that have her serving Stacy-London-meets-1990s-Gina-Gershon realness. Tan gives her a wardrobe that celebrates her own unique style. Bobby creates a space to help her enjoy her time with her husband. Antoni teaches her a few Polish recipes, but also how to enjoy cooking as time to honor herself and her personal history. Karamo opens her up to the possibilities that lie within the future.
Unfortunately, the Fab5 didn’t provide a disruption to these twin narratives. In some cases, they recapitulate them by calling her brave (JVN), and self-sacrificing (Antoni & Tan). Karamo is not filmed making remarks that are disability positive about the future. Bobby is explicitly told by John not to focus on access for John. I get it. Jennifer has sacrificed and she has been brave. It also may be hard to create an anti-ableist narrative in the show given some of the constraints imposed by the ideology of an ableist world (remember our lesson on Althusser and Butler from episode 5). But, in this context, self-sacrifice and courage seem like less a set of laudable characteristics, than ones that cause concern. I wish this episode held more than Jennifer’s hand, like maybe the promise of an aware and anti-ableist world.
Post script: You may be wondering why I chose to focus on the actual individual story when I said I would not. Recently, I saw several public posts that insisted my life as a disabled person was not only tragic, but that caretaking made any romantic partner of mine and people like me a hero. One ethicist has a column in which he responds to letters. In it, a person asks whether they should ditch a romantic interest because of their chronic illness. The ethicist says “yes.” In one post on Medium, the columnist explains why he left his wife who had a chronic illness. A poet described her series of poems by calling illness a series of small deaths. Those writers understand disability as tragic and soul-crushing, and caretaking as heroic. Each of them assume the isolation and fatigue of the heroic caretaker model. Each of them assume disability-as- pitiable-and-terrible as the crux of their arguments and the center of their imaginations about their pasts, presents, and futures.
I wanted to offer another way.
Ride with me.
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