Hearing people exalt hearing. It is just their default. They think that being able to hear is the best thing in the world. Anything less is sad and depressing. I have come to tell you that this is not true.
Today I got new hearing aids. Because hearing aids are exorbitantly expensive and barely covered, if at all, by insurance, it is hard to get them. I have been relying on a broken pair given to me by a Deaf friend who could not use them since they did nothing for him with his level of hearing loss. One of the aids completely stopped working, so I no longer wore it. The other one only worked about half of the time, and neither had ever been adjusted to my specific hearing, which is something that needs to be done. The aids were too old to be fixed- hearing aids only last about five to six years and these were about ten years old. I knew I had no choice but to embark on trying to get another pair of hearing aids.
Hearing people have no idea what this is like. They all think that insurance covers aids. When I tell them my insurance barely covers anything, they are always surprised. “But people need hearing aids!” Yes, they do. Millions of people. The first audiologist I went to, an audiologist I have been going to for over thirty years, quoted me a price of $3,600 after insurance, for two hearing aids. Out of the question. Like most people born in the 1980s, I am up shit creek when it comes to money. 1 in 4 Americans cannot afford a $400 emergency and live paycheck to paycheck, and I am no exception, even though at this point I have climbed out of poverty and am “middle class”. You would think a middle class person who works at a major university and has a master’s degree could buy hearing aids. Not in this country.
I tried another audiologist, one whom I have also been seeing for thirty years or so, and do not like, because they are constantly trying to sell me expensive aids when I go in for a routine issue–like trying to sell me a car. Same scenario. After insurance, the aids were still impossibly out of reach. I was getting pretty upset at this point. Oh I know what everyone is going to say, why don’t you put them on a credit card with extremely high interest and aggressive employees who badger you the minute you are late on a payment? Well I did not qualify for Care Credit, which is really not optimal, anyways. You try having good credit after being impoverished and disabled for most of adulthood. People always assume marginalized identities have good credit. Do you know how things work?
So the time came for me to call around to local disability services agencies and beg for help. This is a time-consuming process, since often people are unavailable, take a while to get back to you, or do not have good information. One agency had refurbished hearing aids for $375, but only for people over 65, which took weeks for me to get all the information about. I was finally able to find an agency to help, and after I proved to them that I was poor and actually Deaf, they started the process to pay for a new pair of aids for me. However, I was lucky that I didn’t make much money on last year’s taxes (which the agency wanted to see) because at the current amount I make, since I got a promotion, I would not have qualified. I was estatic, but also worried, because my aids were broken and these types of state agencies, while helpful, can take a very, very long time to get anything done.
Yes, I use sign language and have an interpreter at work and in the night class I take. However, like many with hearing loss, I do not solely rely on the interpreter and need to be able to hear some sound, read lips and look at the interpreter to fully understand. You know why? Because from the time I was a tiny child, I have worn hearing aids. I did not learn sign language until I was 14, and that was by chance. Like many disabled and Deaf people, the idea was to make me as “normal” and mainstreamed as possible, even to my own detriment. So I got very, very used to relying on hearing and sound to get by. As I said, hearing people love sound. They think hearing is the best. “Everyone should hear!!” Well what does this mean? I have had hearing aids for 32 years. I am extremely reliant on hearing aids, and it is not a choice that I made for myself, but one that was foisted on me. Yes, I am reliant on hard-to-get, exorbitantly expensive technology that is rarely covered by insurance, and that breaks every 5 years. When I was a child, the state covered all expenses around having hearing aids. As an adult, you are left to your own devices. If I had grown up signing, I would not be struggling like this. But also, the nature of my hearing is that I do have a little bit of hearing, and it works well around the human voice. So hearing aids work very well for me and I do like having that option. I also enjoy listening to music and watching movies, like a lot of people, and I absolutely need aids to do those things. Deaf and hard of hearing people should not have to solely rely on hearing aids, but they should be an option. They should be an option for all people, everywhere in the world.
Does this mean I don’t like being Deaf? Absolutely not. I love being Deaf. Hearing aids for me are just what they seem like — an aid. I use them to assist me at times. Not all the time. I don’t always need them or want to wear them.
I have been deafer than usual for many years, since finding hearing aids is such a shit show. This is not the first time this has happened. My entire adult life has been scrambling in one way or another for hearing aids. Medicaid barely covers them, too, if they cover them at all. Was it any different when I was impoverished and on Medicaid? No, it wasn’t. It was a miracle that I got hearing aids while on Medicaid, and that was 12 years ago, when some people still took Medicaid and now do not. That is another thing that able-bodied people think: the government just covers this stuff. Wrong.
I would figure out some way to get hearing aids, and after a couple years they would break, and I would drag them out as long as humanly possible. This is what I have been used to. Someday, I hope to be wealthy enough to buy myself a good pair of aids. I am very used to being Deaf and I like being Deaf. It is not sad. It is not depressing. I don’t know why people think that it is so important that I hear every single little sound imaginable, because most sounds are really not necessary for me to hear. Do you need to hear the sound a light switch makes when you flick the light on? Do you need to hear a plastic bag rustling? There are so many sounds that I do not need to hear in order to understand what is going on. No Deaf person’s heart is breaking because they cannot hear crickets chirping (throwing some shade at a recent New York Times article written by an audist). This is ableist nonsense and it is aided and abetted by those awful videos on the internet of “baby hears first sounds!”, where a baby gets a cochlear implant or a hearing aid. Hearing people love to cry over those videos and feel emotional. Those videos are ableist, audist garbage. The baby probably has no idea what the sound it just heard even was. I would not recommend implanting a baby with a cochlear implant, either, but that is a whole other discussion. But think about it–if I am having this much trouble maintaining hearing aids as an adult, what do you think happens when a child with a CI grows up? THE SAME THING. If you want to implant a baby with a CI then you better be prepared to pay for every expense surrounding that CI for the rest of their lives, otherwise you are really being an asshole.
After months of waiting, I got the hearing aids. It took about four months to get them. Of course, I only was able to get the cheap kind. But that is better than nothing. After being Deaf for so long, I can hear so many sounds with the aids in. It is surreal and strange. There is an adjustment period. Of course hearing people think this is great. You can hear every little sound now! It is actually annoying. I imagine I will get used to it, but I like having the option of taking the aids out and being Deaf. Just being my Deaf self. I like that I can use sign and not always worry about hearing aids. And that is how it should be for everyone. Teach Deaf and hard of hearing children sign language, do not force them to be reliant on expensive technology. There is nothing wrong with being Deaf. There are a lot of very good things about being Deaf, and a lot of shit that I just do not have to deal with. But something needs to change. And that is how expensive hearing aids are. They should not be this out of reach. We live in an audist, ableist world and it is often just the reality that a person needs hearing aids. Or maybe they just want them. Hearing aids to me are like glasses. We all have different prescriptions. We can take them on and off. They help us at work and in social situations. Not a big deal. Why are glasses so easy to get and hearing aids so hard? Insurance needs to cover the FULL cost of hearing aids and Medicaid and Medicare need to cover hearing aids and audiology FULLY in every state, not just for children.
But this is a part of a larger ableist problem. And that is able bodied people exalting being as able-bodied as possible. They don’t just do this to Deaf people, they do it to all disabled people. How many times have you seen some Facebook post about a wheelchair user who used some ridiculous exo-skeleton technology (how much does that cost) to walk across the stage at their graduation? Able-bodied people think walking is just as amazing as hearing. They love walking. Everyone should be bipedal and walk upright, they think. Check out Bad Cripple by Bill Peace for more about that.
If you want some insight into the world of cochlear implants and “implanting” infants and children with CIs, Dr. Laura Mauldin, a friend of mine who is fluent in sign language, wrote this book: Made to Hear: Cochlear Implants and Raising Deaf Children. She wrote a rebuttal to that awful New York Times article too, which the Times published.
Another great blog, while I am at it, is Planet of the Blind, by my friend Professor Steven Kuusisto. Also, there is Wendy’s World, by my friend Wendy Harbour, who is Deaf and got a CI as an adult.
The key to changing things is reading, listening to, seeing, or (whatever way you communicate), what disabled and Deaf people have to say about their own disabilities and experiences. Biases and ableism are very serious problems and you can understand, I hope, from what I wrote, how they influence every day life for people like me. Being disabled is not the problem, people being ableist is the problem. It causes huge struggles for people and it sets us back in very real ways. Don’t watch those videos of Deaf babies getting CIs, read/listen to blogs and books by Deaf and disabled people. Go to the source. And advocate for hearing aids to be fully covered by Medicaid, Medicare and all insurances!
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