How GenAI Hears Me

I recently attended a Hearing Loss Association of America chapter meeting in Los Angeles, and one of the members made the point that the vast majority of people don't understand what it's like for someone with a hearing loss. We are neither fully Deaf, nor do we have normal hearing. We sit between two worlds, often with individualized experiences because hearing loss varies widely from person to person.

I was inspired to speak up more about my experiences, and as a way to do that, I will share my observations on how we are perceived by GenAI technology.

I was born with normal hearing, but lost hearing due to Spinal Meningitis when I was a baby. Since the age of 3, I have worn hearing aids in both ears. You can see my right hearing aid in the photo below. My hearing loss is categorized as severe to profound.

In quiet situations, I exert a significant amount of mental energy to hear and tire after an hour or two of listening. No binge watching Netflix for me. I need closed captioning for most programs. I hardly go to movie theaters because the captioning devices they provide us are insulting, and the open caption options are limited.

In noisy situations, I exert a tremendous amount of mental effort to concentrate, decipher, and translate what I am hearing. I often struggle to engage in conversation and give up after 20-30 minutes to quieter spaces or leave.

I am likely perceived by others as arrogant and aloof, but really I am humble to a fault, and desire deep meaningful connection with others.

I am Not Impaired

I despise the phrase "hearing impaired," and many others who are either deaf or hard of hearing also feel the same. The National Association of the Deaf (NAD) also rejects the term "hearing impaired".

The word "impaired" implies there is something wrong with us, and that we need fixing. While I do try to improve my hearing with hearing aids, to say I am impaired is uncalled for. I don't need that negativity from others. It also negates all the other skills I have gained in order to compensate for my hearing loss.

Yesterday, when I used Claude AI to help me understand some text, it was crushing to see Claude AI refer to my hearing as an "impairment," (see yellow highlights).

Another example of how poorly GenAI represents hearing aids are these images I generated with Microsoft Copilot. My prompt was:

Photorealistic image of a man with short hair wearing a hearing aid.        

It's curious how they show the unit defying physics and floating in front of the ear opening, not hooked on top and behind the hear lobe. I know GenAI is based on the data it is fed and it's possible that not enough data exists of what hearing aids look like, and how they look being worn by people. With little data, the GenAI systems get creative and make up designs that do not represent reality.

Society does not do enough to make the lived experience of those wearing hearing aids known and visible. Part of that responsibility is on those of us who use hearing aids to show up, be loud, be visible, make sure we have a seat at the table so to speak... even though it's fucking loud and we can't hear for shit (it's a long table with many people). Other responsible parties are society at large to invite us to participate, and finally the GenAI companies as well.

Ethical Tech

There's so much promise about GenAI creating a better future, but making sure their models are representative of diversity in the world ought to be a higher priority than making their apps accessible by phone, and roll out new plans for teams.

There's no denying that GenAI is founded on unethical grounding, scraping copyrighted data without proper licensing and permission. As history has shown, certain unethical practices are sometimes overlooked in favor of the tremendous progress that is promised.

It looks like GenAI will follow that same path. But the opportunity for progress is much greater because the GenAI systems can be custom designed for the betterment of humanity. Real world systems like governments and educational systems are slow to change with their bureaucracy.

GenAI is a system, and the outputs are only as good as the inputs. For anyone working in GenAI space, please put your dreams of automation, labor-free economics, and robots aside for now, and use the tech to improve the lives of the disadvantaged and marginalized. That can start by making sure we are represented accurately in ways that make us feel respected, heard, and empowered.

It's bad enough when the governmental, economic, and societal systems are structured in ways that block our access to resources and make us feel unworthy.

We don't need your tech adding to that experience.

#Disability #DisabilityAwareness #Equity #Accessibility #HearingLoss #Accommodations #JobSearch #HiringPractices #Advocacy #SocialJustice #TechForGood #EthicalTech #ResponsibleAI #SocialImpact?