Having had severe hyperacusis with pain for most of my life, I know from personal experience that before the pandemic it was basically impossible to get most places to give me the types of accommodations that I needed. For me everyday noises like people talking and laughing, telephone ringing, dishes clanking, Music or TV, lawnmowers, running water, refrigerators, etc cause me physical pain and lingering migraines. This meant that I was unable to attend stores, restaurants, social events, movies, conferences, extra curricular activities, and most public places. Unfortunately many people with moderate to severe pain Hyperacusis, are unable to attend work, most public places, school, or social events due to the noise level.
29.9 million Americans live with some sort of high impact chronic pain condition. Between 25-30 million Americans live with a rare disease. Some of these conditions prevent people from being unable to participate in daily life activities such as: social gatherings, household chores, stores/restaurants, work/school, etc due to their pain level and/or the sensory and environmental factors such as but not limited to: sound, light, smell, dust, germs, etc.
Although the ADA does guarantee reasonable accommodations to those with a disability, unfortunately some of the accommodations needed by those with hyperacusis, high impact chronic pain conditions, rare sensory conditions, or rare allergies can easily be justified as unreasonable. This means that these conditions are often unable to participate in many activities, work, school, etc. or must endure intense increased levels of pain, or exacerbate their health in order to do so.
COVID-19 has proven that the world is capable of offering: virtual events, telework, telehealth, distance learning, provided separate alternative locations, and having only a very small number of people at an activity or facility. This has enabled me to be able to participate in so many things now, because I can do them from inside my soundproof bedroom or closet with volume control and a mute and end buttons. There is absolutely no reason why after COVID-19 the world cannot continue to offer virtual access, private separate locations/times, and major limits on the amount of people, as accommodations to those with hyperacusis and other types or high impact chronic pain conditions, rare sensory conditions, or rare allergies. Unfortunately, we cannot simply trust that after this pandemic such things will continue to be provided, once they are no longer needed by the majority. That is why I am working to try to get a Title 6: Telepresence and High Level Sensory Modifications, added to the ADA.
This addition to the ADA would Require that all services, facilities, activities either provide a person who has a condition who would otherwise be in pain, ill, or unable to participate due to the sensory and other environmental factors with either an accessible virtual option, modify the sensory or other environmental factors to meet their needs, or provide them with a separate specialized environment to meet their needs. I have had two meetings with Senator Chris Van Halen‘s office in which I asked that he introduce my proposal to congress,and I I plan to follow up with his office in a few weeks. Later this month I also have meetings with Senator Ben Cardin, and representative Kwiesi Mfume to ask them to introduce and sponsor my proposal to Congress as well. If you want to help fight for Title 6: Telepresence and High Level Sensory Modifications, added to the ADA, call, email, and send letters to your national representatives and senators asking them to introduce, sponsor, and support this legislation.
About the Creator
I’m a 17 year old writer & advocate for my rare disease, hyperacusis. I love writing poetry, non fiction articles, & short stories on a variety of topics: mermaids, fantasy, emotions experienced throughout human life, sci-fi, fantasy, ect.