What’s in a name? that which we call a rose
By any other name would smell as sweet.
― William Shakespeare, Romeo and Juliet
Shakespeare’s quote is overused, but the temptation to use it for today’s blog topic was irresistible. I would like to tackle the topic of labels—specifically the question of what label we, individuals who have varying degrees of hearing loss, use to describe our deafness within our professional academic environment.
The World Health Organization (WHO) reports that around 466 million people worldwide have disabling hearing loss (this is a bit over 5% of the population).1They define “disabling hearing loss” as hearing loss greater than 40 decibels (dB) in the better-hearing ear in adults, and greater than 30 dB in the better-hearing ear in children. The Hearing Loss Association of America (HLAA), reports approximately 48 million people in the United State (almost 20% of the population) with some degree of hearing loss.2Because the HLAA estimate includes individuals with slight to severe levels of hearing difficulty (16-90 dB) as well as those with profound hearing loss (>90 dB), their percentage estimate for the U.S. is greater than the WHO’s worldwide percentage estimate. Nevertheless, the numbers help with an important point. Hearing loss is a widespread, worldwide condition; however, how different countries address issues concerning deaf/HoH individuals can vary widely. When it comes to labels, I can only speak to my experiences of living in Colombia and the U.S. I’d like to recount this limited experience and how it has shaped my views, but I really hope our international colleagues will chime in with information that can increase our awareness of how deaf/HoH labels are viewed or used worldwide.
In the U.S., the currently prevalent and most accepted terms seem to be deaf, Deaf, and hard of hearing (see, for example, recommendations from the National Association for the Deaf).3Capitalizing the ‘D’ in Deaf holds special meaning in encompassing a group of deaf people that share a language (ASL) and a culture, and advocacy by Deaf people has contributed enormously to a nuanced understanding of how those in the deaf/HoH communities identify themselves.
In Colombia, the word “sordo” (Spanish for deaf) is the only label I know for people with hearing loss. However, “sordo” often conjures the image of a person who communicates exclusively by signed language (note, however, that Colombia did not officially recognize Colombian sign language until 1997).4Moreover, a 1996 law created to define the rights of deaf people in Colombia defines “sordo” as a person who presents a hearing loss of more than 90 dB that impedes acquisition and utilization of spoken language in adequate form.4 As an individual who relies primarily on hearing aids for communication, I have often felt at a loss in Colombia for words to describe myself, since “sordo” seems to have such a narrow definition. As a country, Colombia has not undertaken a comprehensive discussion about the best language to use when characterizing people with disabilities, to the extent that I know of no widespread recognized term for myself. Thus, for me, the abundance of labels to choose from in the U.S., even if each comes with some historical baggage, has always felt like a relief.
Perhaps this partly explains why I often reach for a term to describe myself that has fallen out of favor among many: “hearing impaired.” My comfort with this term may also stem from my scientific background. It feels like a useful description that (most of the time) explains relatively accurately that I have difficulty hearing, but will communicate through oral means (with all its attendant problems). Calling myself hearing impaired seems to me equivalent to saying that I am very nearsighted (and thus the shape of my eye causes images to be focused in front of my retina), or that I have a skin discoloration caused by a vascular anomaly (i.e. a port-wine stain) on my left hand. I’m not bothered by the term’s focus on something about me being “wrong.” Maybe because I’m a biologist I feel very aware that my sensorineural hearing loss is due to damage to my tiny cochlear hair cells, so that they cannot accurately transmit sound vibrations to my auditory nerve for my brain to interpret. “Damaged cells” fits comfortably within my definition of impairment.
Do I worry that the label I use will be taken by others to define me? The thing is, I do feel that my hearing loss contributes to who I am. Being Colombian also contributes to who I am, as does being an evolutionary biologist, being nearsighted, and being an introvert (which is probably due to some aspect of brain chemistry somewhere). The color of my skin, the color of my hair, my physical dexterity (or lack thereof) all contribute to who I am. None of these traits explains everything about me, but I am fairly certain that they, and others I do not list, have all shaped the person I am today. I therefore find it hard to get riled up about being referred to as hearing impaired or a hard of hearing person.
So what label to use? My opinion is that is that your label should be the one that you prefer. A label should feel accurate, non stigmatizing, non belittling, and comfortable. But the flip side to that is that nobody, not even our fellow deaf/HoH academics, can possibly guess what we prefer. The onus is thus on each of us to introduce ourselves, and let our colleagues know how we identify. And the onus is also on each of us to be kind and patient when our colleagues use something other than our label of preference.
What do you think? Is there an optimal way to refer to all deaf/HoH people in our community? An optimal way to introduce ourselves to our academic colleagues and students?
To our academic colleagues outside the United States: we need to hear from you to help us achieve an expanded understanding of the deaf/HoH experience around the world. How do you most often refer to yourself to others? Are certain labels regarded negatively?
1http://www.who.int/news-room/fact-sheets/detail/deafness-and-hearing-loss
2https://www.healthyhearing.com/report/52814-Hearing-loss-statistics-at-a-glance
4Zambrano-Valdivieso, O; Almeida-Salinas, O; Suárez-Uribe, E; Restrepo-Pineda, J. (2017). La enseñanza de la lengua de señas colombiana como estrategia pedagógica para la inclusión educative—Estudio de caso. Revista Inclusión & Desarrollo, 5 (1), 37-48.
I use a variety of different labels depending on the context of the label. The most common label that I use with hearing people is ‘part deaf’. This signals that although I may seem hearing (I speak and speech read), I have a lot less hearing and navigate the world quite differently than say, their hard of hearing aged aunt who recently stared using hearing aids.
While I sometimes use the term ‘hearing loss’ in a medical sense to describe my deafness, I prefer to identify as ‘part deaf’. To me, this captures how I think of myself and provides a more positive framework to explain how I interact with people.
I love the point Ana makes in this post that it is best to ask each person how they describe their deafness. Recently, a well-meaning friend introduced my deafness to others as my “having a hearing problem”. This served as a wonderful teaching moment for me to explain to everyone why I felt that phrase didn’t capture my point of view. To me, I am not the problem; rather, the problem is that people do not provide accessible communication.
I like part deaf! I generally refer to myself as deaf because that’s how I identify and I like to watch people’s preconceptions about what a deaf person ‘looks’ get shaken up (but you can speak??). But sometimes it is just more expedient to say ‘I have a hearing impairment’ when facilitating communication is my primary goal.