books, throwback thursday

Throwback Thursday: The Visibility of Disability in Hole in the Heart: Bringing Up Beth by Henny Beaumont

Many disabilities, such as Down Syndrome, are visible disabilities, and as such, can be apparent from appearance alone, often from an initial meeting.  In the graphic memoir Hole in the Heart: Bringing Up Beth by Henny Beaumont, the appearance of the titular Beth, and thus the conveyed visibility, or at least the stigmatization of the visibility, of her Down Syndrome changes as Beth grows and her mother, Beaumont, begins to cope with Beth’s diagnosis.

Early in Beth’s life, when Beuamont is still struggling with the idea of her daughter’s diagnosis, and fearful for how strangers will perceive Beth because of her diagnosis, Beth is often illustrated as inhuman, for example a sack of potatoes (p.83) and as a literal monster (pg. 85 and 198). Beth is also shown to be excluded in family pictures for fear of ruining them (pg.125). 

Towards the end of the memoir, as Beth has gotten older and Beuamont has become more accepting of her daughter’s diagnosis, and what it means for how Beth, and by extension her family will navigate the world, an example of this being moving Beth to the private special needs school. Beth is no longer initially excluded from family photos (pg. 216). By this point in the memoir, Beth is no longer illustrated as inhuman. A bigger change however, is the way the visible characteristics of Down Syndrome in Beth are illustrated subtly differently. Towards the beginning and middle of the memoir, Beth is often drawn in a side profile, and when she isn’t, her facial features which are particular to Down Syndrome are drawn to stand out because the memoir is making a point of the ways in which Beth isn’t fitting in, for example during the christmas pageant (pg. 150). By the end of the memoir, Beth’s face is drawn in full front-facing detail just as often as the other characters, not only to have her stand out in art style. 

The inhuman imagery of Beth seems to be Beuamont’s way of illustrating her fears for how Beth will be perceived by others, in particularly strangers, based on her Down Syndrome, and the immediate perception of being disabled and different that Beth will always have because Beth’s Down Syndrome is a visible disability as well as a developmental one. The visibility of Beth’s Down Syndrome began before she was even formally diagnosed, as first a nurse, then a doctor took one look at Beth as a newborn and immediately knew she must have Down Syndrome in the opening scene of the memoir. This single look followed by immediate knowing by others is something associated with stress for her daughter’s health and the terror of not knowing what was wrong because Beuamont herself did not initally see something wrong with Beth when she was born. Many illustrations of Beth and an overemphasis on the characteristics associated with Down Syndrome make her and her disability hypervisible. Beuamont makes Beth Down Syndrome hypervisible in a sense through words as well, notably when telling friends and acquaintances about the birth of her daughter, she will tell them Beth’s diagnosis before they even get a good look at the new baby, preempting their ability to make a judgment based on Beth for her appearance by telling them outright (pg. 79). 

The way Beuamont treats Beth’s appearance changes with the change in illustration noticed. As she begins to better understand her daughter’s diagnosis, she also stops treating her daughter’s appearance as something to be ignored or hidden, but as something her daughter can take pride in.  This is particularly noticeable in one of the recurring images throughout the memoir: Beth’s swim goggles. 

Appearance, more than whether her disability is immediately visible or not to others, also has aspects that can be controlled. Beaumont for much of the early and middle of the memoir is preoccupied with Beth appearing to behave like other children and worrying about what other people think of Beth, but does not bolster Beth’s sense of sense through the controllable aspects of her appearance. Rather, she dresses Beth differently from her sisters’ who are dressed to match for a family photo, singling her out (pg. 126). During the recounting of Beth’s swim classes, Beaumont struggles to get Beth to wear her swim cap despite Beth’s protests against one, and Beth is wearing goggles while her brother isn’t wearing either of these things. The goggles are notable because they cover Beth’s eyes, one of the most distinguishing features of a person with Down Syndrome. Towards the very end of the memoir, Beth asks for her goggles in the bath, and her mother reassures her they aren’t needed. While surfacely this is simply a true statement, Beth doesn’t need goggles to take a bath, coming at a point in the memoir where Beuamont has finally stopped being ashamed of her daughter’s diagnosis, it also seems like an admission that Beth does not need to cover the visible parts of her diagnosis.  

The illustrated medium of Beuamont’s memoir makes not only the actual visibility of her daughter’s diagnosis visible to the reader, but the change in Beuamont’s perception of her daughter’s disability through the way the visible characteristics are drawn and highlighted. This is important because nothing about Beth’s actual appearance changed over time other than the fact she got older, she didn’t begin to look less like a child with Down Syndrome, if anything her disability would become more apparent through her behavior and developmental delays. But her disability seems less visible, and stands out less over the course of the memoir, because it no longer becomes the focal point of Beth for Beuamont, as Beuamont lets go of worrying about how others will perceive Beth and begins to simply accept Beth as she is. Beyond Beuamont’s memoir, this is important because the visibility of a disability does not tell someone the full story, just as the doctors could see that Beth has Down Syndrome but that didn’t tell Beaumont how to raise a child with Down Syndrome. If Beaumont had been less worried about the perceptions of others, or making sure Beth could have the appearance of a nondisabled child by, for example, staying in the mainstream school, then she might have been less hesitant to seek the help she and her daughter needed. Much disability awareness is about making disabilities visible and known, even the disabilities that aren’t visible outright in individuals. But Beuamont has shown that visibility does not immediately bring understanding or acceptance, which can take much longer.

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