Opening myself up to community care, advocating for my autonomy
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Opening myself up to community care, advocating for my autonomy
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Thank you for being here!
I have been in survival mode. The last several days have been an exhausting whirlwind of an experience for me. Last year, I received a letter from the manufacturer of my hearing aid telling me that they would be stopping any repair service and discontinuing the hearing aid that I had, on September 30th, 2022 (ironically my birthday.)
I had begun the process in May of this year to get my new hearing aid through my health insurance provider. At the beginning of August though, it was shared with me that insurance denied the approval to cover the cost of my aid. So, I started to work on appealing their denial with the help of the hearing aid manufacturer when out of nowhere, my hearing aid broke!
A broken hearing aid is weird, it sounds like I am constantly in a staticy underwater wind tunnel that is then compressed into a very low-quality audio file. It makes things pretty unbearable. I have to be super close to anyone to barely even hear what they are saying, I can’t drive with the distortion of the sound and since this is a new sounding way of hearing for me, it becomes even more deeply fatiguing trying to move in the world to just do basic tasks that I need. It makes my body work overtime to understand anything. One of the other strange things about a broken hearing aid for me is that my hearing abruptly changed. The way that it sounded was an adjustment that never really settled in my body, it gave me a massive headache to even try to process sound & understand things around me.
Often when I tell strangers or people I am getting to know that I am Deaf, a common comment is “well you can hear me now!” which has always troubled me. I try to explain that I have a hearing aid and that I have to focus on their face to read their lips to pick up what they are saying. My hearing aid and my sight play hand in hand. When my hearing aid breaks, this takes away a lot from me. It pauses so much in my life. On top of the pause, it isn’t an easy quick fix to get my hearing aid properly cared for.
Another question I get asked often is if I know how to sign. I was never raised with sign language, partially due to the number of surgeries on my body eating up a lot of my time as a kid, specifically surgery on my hands. I do think it’s ironic though that I am currently taking ASL classes with my partner to help me communicate in case of emergencies (such as the one I just moved through) and to better communicate with other Deaf people. It’s been a slow process learning ASL with me having eight fingers and limited dexterity.
Due to my Deafness, I rely on the usage of a bone-anchored hearing aid. In trying to look for proper explanations of how the device works, I found the NDCS website that states, “A bone conduction hearing device (also known commonly as a BAHA) works by transmitting sound vibrations through the bone. The sound processor converts the sound picked up by its microphone into vibrations. The sound processor then transmits the vibrations through the bones of the skull to the cochlear of the inner ear. The inner ear then converts these (sound) vibrations into electrical signals that the brain interprets as sound. A bone conduction hearing device, therefore, allows a child to hear sounds that can’t pass through the ear in the usual way, which is through the outer and middle ear.”
I received surgery to get a Baha when I was around 9 years old. Beforehand, I was too young to get the surgery and so I wore a bone-anchored hearing aid that was attached to a headband, as pictured in this very high fashion photo of me as a kid.
When reaching out to the hearing aid manufacturer, I was informed that they could fix it but it would delay the process of insurance paying for my new hearing aid by six months. It would be one thing for me if it were fixable and guaranteed to be able to be fixed again in the future, but since the model that I had was about to expire from the company, it would’ve left me with no sort of safety net if it were to break again. The manufacturer recommended I try to get a loaner hearing aid from my audiologist. I reached out several times to my audiologist and the hospital that they are in to only receive a lot of gatekeeping. They couldn’t give me any information and would tell me they’d pass things to the audiologist. They communicated with me the audiologist would reach back out to me. I waited a full day with no response from the hospital or audiologist. I reached out the next day to be ultimately asked, “well didn’t the audiologist reach out and tell you that we don’t carry any spare BAHA’s?”
I was upset and on top of the communication troubles, the hearing aid company was having difficulties obtaining the records needed to move forward with appealing the insurance denial to help me get the new hearing aid. So my partner and I decided to just show up at the hospital, where it was only then that we then found out the audiologist was out of town, hence the lack of communication. I received my records and scheduled a hearing appointment to put on my file, to help with my claim. Here I was in an emergency and it wasn’t super accessible for me to get answers that would get me proper care. Not only was there a lack of accessibility trying to reach somebody but there was also a lack of accessibility when it came to how I could communicate due to the broken hearing aid. I was ultimately feeling really depleted and unsure as to when insurance would approve the payment of this new hearing aid. This led me to a moment of acknowledging that I needed to get this new hearing aid, out of pocket, quickly. Work was being halted, plans had to be moved, and it was just difficult to communicate with my loved ones. I didn’t have the funds to do this and so I ultimately decided to fundraise the money to purchase it.
I have talked before about my feelings regarding fundraising and how for a long time, I was hesitant to fundraise for various medical emergencies, like the surgery that I had at the beginning of the year. I feel kind of weird just quoting myself but to save time from you having to read the old entry I wrote, I did want to pull some words from the previous newsletter mentioned that states, “Asking for help is deeply vulnerable, especially when it can be tied to our bodies that need nurture. Asking for help is asking to be loved. Even in the midst of my traumas from receiving ‘performative care’ over the years, I continue to look back at the community care that I received as well and continue to receive.”
I promised myself this year, to ask for help if I were ever in a situation where I needed community support. I made a Gofundme and put it out into the world. My partner and my friends helped me to write it out. I was really scared, but that fear soon diminished as support rolled in. Community showed up, from Atlanta and beyond. I was able to raise funds in just a matter of a few hours, so I ended up closing the fundraiser. I am still in awe by the speed at which others showed up for me. I used any remaining funds on any payments I owed on the audiology appointments and redistributed other funds to other calls for mutual aid. I noticed that the majority of donations were $5, $10, or $20 and how quickly those amounts added up to meet the larger goal. Every bit helps. It just showed the power of community & mutual aid. I am still just sitting with so much deep gratitude to all of those who donated, shared the fundraiser, reached out to check on me, and shared with me their stories about navigating a world with a broken hearing aid.
It also reinforced in me the need to continue to share and amplify mutual aid efforts of others, because as much as I had the privilege of meeting my goal quickly I know others are having difficulties meeting their goals with ease. So many people are in need right now and we shouldn’t become desensitized by these requests for mutual aid. As much as social media can help us amplify things, I think it numbs us at times with mindlessly scrolling which may sometimes prevent us from spotting these calls to action from our communities.
Image Description: An Instagram post by @abolitionistdirectaid that features a screenshot of a tweet by @sapphic_siren that says “Mutual aid is not rooted in generosity. It’s rooted in community. I don’t like when ppl see community building as selfless. Building community is necessary for both of us. It’s crucial to your survival today, and it might be crucial to my survival a different day.” Below the screen capture is a list of tags, “IG @theSapphicSiren If you learn from me, pay me: patreon.com/theSapphicSiren, Debut poetry book link in my bio: Linktr.ee/theSapphicSiren”
Once I received the funds to buy the new hearing aid, I went and placed the order! The arrival of the hearing aid had some slight delays but thankfully made it by the end of the week. I then had to make an appointment with my audiologist to program the hearing aid based on my needs as a Deaf person. It was communicated to me that an audiologist wouldn’t be able to program my hearing aid for another two weeks, which was tiring to think of. I ended up contacting about 10 different audiologists in Georgia until I was able to get an appointment the day after my new hearing aid arrived. I was still met with gatekeeping until I reached out to a more private practitioner outside of the hospital system. While communicating as much as I could that I was navigating a medical emergency, very few understood that being Deaf for me impacts my everyday life especially when it comes to me not having the tools to help me move through the world. It was a reminder to me, that as much as I can self-advocate for my needs, that self-advocacy doesn’t guarantee understanding from everyone. The process of being an advocate for ourselves is deeply exhausting and yet, we try & try again until someone can open their hearts up to our needs.
While sharing Alice Wong’s GoFundMe (a Disabled community member who truly needs help, please donate to their GoFundMe if you have the means) Mia Mingus tweeted “I think about the disability tax of all this and how an ableist capitalist world shamelessly profits off of disabled people’s survival. How we get painted as burdens, even as the system grossly uses us and the profit it makes off of our very survival to keep itself going.”
I share my stories about being Disabled and the frustrations I feel about the systems that are actively trying to deny me, often. I think though sometimes I have become hesitant to share more of the process, for fear of what others may think. I’m at a point though in my life where I am tired, tired of hiding these experiences that are happening in real-time for me. I don’t share these things to garner pity, I share these things to bring more awareness to the flaws we are surrounded by. I don’t want to be seen as a token of “overcoming” something. I am not overcoming anything in my Disabled body and existence. I can’t overcome the fact I am Deaf, I can only work with the tools given to me to adapt. The tools though are flawed too and so is the system that builds these tools. I loved what Deaf YouTuber “Let There Be Ears,” said in a video, saying “… I’m Deaf without hearing aids, hard of hearing with hearing aids…” I think that quote sums up my experience wearing a hearing aid. My hearing aid isn’t a “cure” for my Deafness, along with my vision, it simply assists me.
Now I am in this strange space where I am processing what just happened these last few weeks, from learning how to adapt to hearing with a broken hearing aid to having such difficulty getting the care I needed from the hospital & insurance and then receiving a new hearing aid trying to adapt to another new way of hearing things while barely getting used to hearing from the broken one. It feels like my body and brain are playing catch up. The audiologist who programmed my hearing aid told me it would take about 2-3 weeks for my brain to fully adjust to the new hearing aid. I am taking it slow, hearing new things, and just trying to take things a bit slower. I have a lot more to share in the coming weeks and months regarding this process as well as the process of me learning how to hear with a new hearing aid.
I hold so much gratitude. I am deeply thankful for the support I received from people, ones in and outside of Atlanta. I am so thankful for my loved ones who have been watching out for me. I am so grateful too that you, take the time to read what I have to say. Your support is something I don’t take for granted. I wanted to leave this entry too with a post I saw on Instagram the other day, you really never know who will show up for you until you take some time to ask for help.
Image Description: An Instagram post from Bunny Michael, that has a rainbow background, the text typed out on the post reads “Me: I hate asking for help because it makes me feel weak. Higher Self: “Asking for help means you are strong enough to realize you deserve it.”
Thank you, thank you, thank you!
Four things for you!
Speaking of Hearing aids, Deaf author Sara Nović wrote an opinion piece about the new rules the FDA placed about hearing aids becoming over the counter and how these hearing aids aren’t accessible to everybody. Read here.
Help Abundia, an Indigenous Two-spirit Trans Femme needing community support. Her Cashapp handle is $Coatl66 and you can also donate to her on Paypal @NahuatlKeer
Atlanta artists Chiomma Hall & Pia Muhihu are currently trying to raise funds to paint a mural at Atlanta’s annual mural fest, Forward Warrior. You can read more about their project in the Instagram post below and donate here. Be sure to add “for Chiomma” in the donation description. The Instagram post includes image descriptions.
If you are making things for social media, please read this post by @higher_priestess about creating Image Descriptions and the difference between Images Descriptions and Alt-text. The post has image descriptions in the captions.
As always, thank you so much for taking the time to read my newsletter and I look forward to sharing more things with you soon! Please feel free to comment on this post and to share anything that connected with you to a loved one or on social media if you wish to do so. I hope that you are staying safe and well. <3
Opening myself up to community care, advocating for my autonomy
wonderful :) thank you for sharing!