By
Leah D. Smith (Director of Public Relations, Little People of America)
and
Joseph A. Stramondo (Assistant Teaching Professor, Health Administration Department, Drexel University College of Nursing and Health Professions)

A middle-aged man who decided to commute to work through the city via his bicycle on a cool, autumn day casts a glance to the side as he is stopped at a red light. Out of his peripheral vision, he catches the tell-tale bulb flash from a cell phone camera, so this time he is certain of what has happened. The young man sitting in the passenger seat of the car next to him smirks and gestures with his friends as they laugh at being caught snapping the photo of the man with dwarfism astride his bike.

A busy, thirty-something working professional’s meeting schedule doesn’t allow her to take time in the middle of the day to see her primary care doctor for the symptoms of the ear infection she has been dealing with for a week, so she goes to a walk-in clinic in the evening. Before she is even able to describe her symptoms, the physician interrupts her with aggressive questions about her stature, which she patiently answers, explaining that she was born with achondroplasia and has seen some of the best geneticists and orthopedic surgeons in the country. At the conclusion of the consult, along with the antibiotics for her middle-ear infection, the physician writes up a script for blood work, telling the woman that she needs to get the function of her thyroid checked because that may be the cause of her short stature.

Both of these stories are true and have recently happened to people close to us. They are two of a countless number of similar stories that are constantly told and re-told everywhere from family dinner tables to cocktail parties. When we were recently invited to write a guest post for the IJFAB blog about Dwarfism Awareness Month, we thought it best to provide a signal boost to these sorts of stories, simultaneously providing context for the rest of our argument.

“Awareness” campaigns seem to be all the rage in medical charity marketing. We are constantly bombarded on social media and elsewhere with calls to be aware of autism, ALS, breast cancer, and a myriad of other disabilities and illnesses. Most times, these awareness campaigns are aimed at either fundraising for cure research or public education to serve the ends of early detection and treatment. These other awareness campaigns are often fraught with ethical complexity, but during the month of October, we keep coming back to our own community’s attempt to co-opt and, perhaps, subvert this theme of awareness.

To be sure, the dwarf community is not intending to prompt early treatment of dwarfism or raise money for medical research (though we would urge you to donate to Little People of America’s college scholarship fund, if so inclined). So, what exactly are we trying to do by jumping on the awareness bandwagon? What could we even mean by calling for greater awareness? Who do we want to be aware? What should they be made aware of and to what ends?
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As illustrated by the anecdotes above, in the lived experience of little people – as with other marginalized groups – objectification is pervasive. Sometimes this means being regarded as objects of amusement when our picture is taken on the street without permission or when people line up to participate in dwarf tossing events. Perhaps less obviously offensive, but still deeply problematic, we are often regarded as medicalized “objects” to be fixed or studied or cured. For dwarfs, this objectification is probably the central feature of the ableism we experience, which has negative material consequences ranging from employment discrimination to physical assault.

So, what we think others need to be “aware” of is just the basic fact of our subjectivity. We are people with lives constituted by our own varied experiences of the world. We are not passive objects to be acted upon, but subjects with our own point of view that should be appreciated as such. This is not likely to be a profound insight to the readers of this ethics blog, especially if there are any Kantians among you. It seems that, treating people as people, regardless of the features of their embodiment, is a basic premise of feminist ethics.

Even still, we believe that aggressively affirming our own subjectivity and rejecting objectification remains a goal for our community and this brings us to a secondary sort of awareness that we can try to nurture during the month of October and year round. This is an awareness of the sorts of stories we introduced this essay with. Well-meaning, sympathetic people who would never dream themselves of paying the entry fee to a “Midget Wrestling” event are likely still not aware of just how pervasive objectification is to the every day lives of dwarfs. So, we ask you, dear reader, not just to be aware of our personhood, but to be aware of the fact that there are many individuals we encounter on a daily basis who would deny it to us.

Biographical Notes:

Leah Smith has served as the Director of Public Relations for Little People of America for the past 4 years. She holds a Masters in Public Administration, with a focus in Public Policy, from Texas Tech University and has been professionally and personally involved in the disability rights movement for the last decade.

Joseph Stramondo teaches courses in health care ethics at Drexel University and holds a Ph.D in Philosophy from Michigan State. He has published articles on philosophy of disability and feminist bioethics in Social Philosophy Today and IJFAB.

Leah and Joe are partnered and reside in Philadelphia with their two dogs.