When Your Wife is Mistaken for Your Caregiver

 By Brian Brutlag

Assistant Professor of Sociology, Rio Hondo College

I am a huge geek. My particular flavor of geekdom is superheroes. Since I was a kid, I have always looked to superheroes for comfort, solace, and motivation as a part of my reference group. Although superheroes are a part of my personal development, and I try to incorporate them as much as I can in my professional career (my sociological blog focuses on the analysis of comics and culture), I am always reluctant to display my admiration through clothing and other forms of apparel because when I do, someone always treats me like a child or some other reductive equivalent. Why? Because I have a physical disability.

I was born with a mild form of Spastic Cerebral Palsy (CP), technically called “right-hemiparesis.” When I was born three months premature, a stroke affected the mobility of my right arm and leg. Unlike others with more severe forms of CP, I am not in a wheelchair, my speech is not affected, and I am completely independent. Because my disability is less “detectable,” I can glean some forms of able-bodied privilege.

In this in-between space, I embody what Patricia Hill Collins describes as the outsider within, someone who finds themselves between two communities, allowing them to have a foot in both worlds but never feeling fully accepted by either, thereby becoming the proverbial “other.”

Even with this form of partial (in)visibility afforded to me, I still consistently get one of two different disability stereotypes: either the aforementioned infantilism, or as an inspiration for other able bodied people.

I have been asked to be the subject of prayers more than once; am constantly asked if I need help (including being offered wheelchairs unnecessarily); told that I am an inspiration for just participating in everyday life; and, as the title of this post suggests, my wife has been mistaken for my caregiver on more than one occasion. It is by experiencing the thousand little cuts of these microaggressions throughout a lifetime that one learns how to live within an able-bodied culture.

Living with a physical disability, one learns very quickly that the world is not constructed for you. From staircases, clothing designs (buttons suck! ), car manufacturing and operation, and forms of entertainment (such as video games), to the social norms that rule our social interactions and the embedded ablest language that we use in common colloquialisms (think the use of words like “crazy,” “retarded,” “crippled,” “special,” and so on).

Everywhere a person with a disability turns, these are some of the constant reminders that we live in an “able-bodied” world. This is what disability studies scholar Robert McRuer calls “compulsory ablebodiedness.” In his chapter in The Disabilities Studies Reader, McRuer describes that this process “functions by covering over, with the appearance of choice, a system where there is no choice” (p. 303).

That lack of agency is the inability of a person with a disability to exist within society as a person with a disability. Instead, we are constantly pressured to adapt to our surroundings, cure ourselves, be inspirations, or have our disability “balanced” with some form of “specialness or “superpower” common in depictions of disability in popular culture (think Daredevil or Professor X).

The fight for disability rights, and the normalization of disability, is plagued by detractors (see Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights, for example). While these detractors are quick to clarify that they are not against people with disabilities, that could be because they are afraid of reprisals. These detractors do however actively oppose legislation such as the Americans with Disabilities Act (ADA) that promotes the independence and personhood of people with disabilities.

This is partly due to the unique nature of disability rights requiring more than an ideological change; they also need physical changes to the environment (e.g. ramps, automatic doors, and curb cutting, for example), which necessitates an economic, as well as a social investment in equality, which some people are not prepared to provide.

In the end, in order to move away from this constant need to adapt to gain validation within society, disability activists need to pursue more examples of positive representation of disability in TV and film. Most characters with disabilities in TV and film are all played by non-disabled actors, and often reinforce tired stereotypes. Maybe as people with disabilities are treated as full and equal human beings, maybe then I will be able to wear what I want without ridicule.

Comments

[miranda]

such a good, heartfelt article.