From “Is She Retarded?” to Disability Advocate

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Have you ever been in a courtroom? You probably remember someone in the courtroom who typed down every single word being said, that person is called a CART court reporter. CART, or Communication Access Realtime Translation, is a service used by the deaf and hard of hearing that provides real-time captioning and is technology that is used in courtrooms, classroom, or even the theater. CART is closed captioning for people with hearing loss in a live setting and services have been adopted by hard of hearing communities, basically becoming hard of hearing people’s “ears.”

A little over a year ago I found myself working for the largest and most well-funded government agency, the Department of Defense. As a person with a hearing disability, I would always request CART services for every single workshop and event I attended while at the DoD. Often, however, I saw many of the same people crowding around me trying to look at my screen.
Initially, I thought people were just curious, but I discovered something else. Most of the people looking at my computer suffered from slight to moderate hearing loss and looked at my computer because they missed part of the information being said. If you didn’t know, hearing damage is the number one medical complaint of returning veterans, who make up a significant segment of government employees within the DoD.

I started asking these individuals why they weren’t requesting CART for themselves and always got three reasons that summed up why people were not requesting accommodations.
The first reason, despite the American With Disabilities Act of 1990 (ADA) which mandates business, educational institutions, and government agencies provide services for the disabled, especially when these organizations receive government funds, there was always that fear of discrimination in the workplace by employers. In an ideal world, the ADA would protect against any and all types of ability-related discrimination by an employer. However, the law as it is written is not always how it works out in the real world. Further complicating the issue, discrimination suits because of disability are often difficult to prove, expensive, and can take years, so most people do not even bother to ask for the services they need, much less advocate for themselves. However, the DoD excels at this by actively recruiting people with disabilities and providing them with the necessary accommodations once requests are made.

The second reason is that admitting you have a disability is hard! It took me almost a decade to tell people upfront that I have a hearing disability. There is that social anxiety of “will people treat me differently?” or “what if they don’t hire me because I need CART.” There is a particular story that illustrates this point. When I was about ten or eleven years old, my mother had taken me to a mattress warehouse to buy a new bed. As my mother spoke with the salesman, I remember music playing loudly in the background while I struggled to hear. My mother stepped away for a minute and the salesman started asking me questions. I assume his questions were “Do you want a mattress that is hard or soft? Do you want your frame to have a specific color? Do you know how tall you are?” I was nervous about my inability to hear him, but rather than advocate for myself to ask him to turn down the music, speak louder, or write down his questions, I just stupidly just shook my head ‘yes’ to each one of his questions. I remember he got frustrated when my mother returned. I wasn’t able to hear much from his questions, but when he told my mother, “I’m sorry ma’am, but is your daughter retarded?,” I heard that loud and clear. For years, this same question was repeated to me in various ways, “Are you stupid?” “Are you deaf?” “Why are you ignoring me when I say hello?” It was only when I learned that if I told people, “hey, I have a hearing disability, can you speak louder and not cover your mouth because I’m reading your lips” that things changed. People were nicer, more understanding, and less impatient. Being hard of hearing has been a transformative learning experience for me about being comfortable with who I am, my limitations, and my interactions with people who have never experienced someone with hearing loss, particularly in the workforce. Even more so, I have learned about the importance of being in workplaces where I am not treated as an outsider or burden because of my hearing loss and my employer is open to learning and working with me around services and accommodations I may need.

Back to the DoD, the third reason why people with disabilities don’t request accommodations is that requesting accommodations is often a daunting process. In particular, when a disability is invisible, as is often the case for the hard of hearing, coming to terms with their hearing loss is a difficult process. I have been blessed with a host of organizations including the Center for Hearing and Communications, New York University, the NYU Cochlear Implant Center, the Alexander Graham Bell Association for the Deaf and Hard of Hearing, and the National Association of the Deaf that have helped me advocate for myself in academic, professional, and personal settings from a young age. I am deaf, but at the same time, I am not Deaf. I don’t sign and use oralism as my primary and only means of communication. As more and more individuals lose their hearing later in life, they find themselves without these support system, awareness of services and technology that can facilitate their lives, and consciousness of their legal rights. Most people, then, find themselves overwhelmed when they experience hearing loss that challenges their everyday lives, withdraw, and “deal with it” until the situation becomes so terrible they are forced into seeking help by family, friends, or colleagues.

Being a person who lost her hearing has been a challenge in itself. As I navigate a word that isn’t always hearing-loss friendly, I am constantly reminded of the importance of communicating effectively with people around me. While in the Department of Defense, as other opportunities after it, I have been honored to be part of workplaces that accommodated my disability. The reality has been that disability service coordinators can’t help people if people aren’t making requests and connecting with available services and resources available. All you need to do is ask for the services.

Your accommodation requests will not always be met, especially when working for smaller organizations or organizations with limited budgets. But there are things employers can, and should do to accommodate hard of hearing employees. Some examples are requesting a colleague share notes during conference calls, having meetings in circular tables so hard of hearing employers can read everyone’s lips, or even assigned tasks via workforce tools like Asana or even email instead of verbal communication.

I have been hard of hearing for a very long time, and will continue to be so for the rest of my life. Being comfortable with that has encouraged me to be a better advocate for myself and others, and in the process, encourage others to be advocates for themselves. It is important to stop caring about the stigma of being disabled because my disability is still going to be there, whether or not people around me know. At the end of the day, I have the power to decide whether people around me choose to identify me as the “retarded girl who never understands directions” or the “woman in the office with hearing loss who you need to face when you speak, because she reads your lips.”

This was originally posted on Medium.

Brandon Luong