Camisha L. Jones’ chapbook Flare was released by Finishing Line Press in 2017.
Many of these poems employ metaphor and talk around “chronic illness”, which make them relatable for a wide audience. It also caused me to be curious about the specifics of how your life is affected and how frustrating it must be to live in world that is not disability-inclusive. “The Sound Barrier” is perhaps the first poem that gave me a concrete picture of the challenges that you face, as well as the reactions of others when interacting with you becomes “an inconvenience.” Could you talk about how accommodating disability (and living with a disability) “ain’t open to negotiation”?
The body wants what it wants. Needs what it needs. And I’ve become more and more aware of the fact that part of being human is being in relationship with the body you were born into. Others are in relationship with that body as well. I’m not always a good partner to my body. Sometimes it tells me “I need to rest” and I push through my to-do list anyway because being productive and driven is part of what society tells me it means to be successful and capable. I pay a price for that choice – a price that may put me in a pain flare for a few days, a week, sometimes more. And that’s the non-negotiable part of that interaction.
When I interact with others and say, “Hey, for me to participate fully, here’s what I need” – that too is non-negotiable. If the need is captioning for a conference call and it’s not provided, then you get less of my presence and participation. You get less of what wisdom and skill I might contribute. And if that sort of thing happens repeatedly, you send a strong message that my full engagement is not valuable to you. Accommodation – whether it’s the work I do for myself or the work others do to ensure my full participation – is not just about the concrete shifts in how things are done but also how one thinks about bodies that interrupt the perceived norm. We can think of those interruptions as a nuisance or we can see them as opportunities for personal and societal growth.
What are ways that everyone can react to and anticipate needs of people with hearing loss or difficulties?
In terms of event planning, I’ve actually posted a list of tips on my Facebook page. Here’s some of what I share there that’s relevant to communicating with someone who’s hard of hearing:
- It helps if you are facing them and for your mouth to be in clear view. Be mindful not to cover your mouth while you speak.
- Be mindful of how fast you speak. Slow your pace down a bit and try not to cram your words together. Enunciate but don’t over-enunciate unless requested to do so.
- It’s helpful to check in periodically by asking if the person heard what you said.
- Try not to get frustrated by being asked to repeat yourself.
- Be willing to write down what you’re trying to communicate if the person has trouble understanding you.
- Sometimes, especially for people who wear hearing aids, the issue is clarity, not volume. Ask which is helpful before shouting.
- Minimize or eliminate background noise when possible.
Most of all, be patient and realize every person’s needs are different. Ask what will be most helpful (in advance where that’s appropriate) and be willing to respond accordingly.
Absolutely. Being patient and ensuring that you are communicating kindly instead of getting irritated or exasperated is really important to demonstrate dignity and respect. 🙂
There are poems about other types of illness – lupus, a cell mass that wasn’t cancer, even the scars earned from childhood accidents. “Good health” is something that is too easily taken for granted. How does writing about these ailments transform them?
Diagnosis can be traumatic. When a doctor told me a few years back that I had lupus, my mind started spinning. One of my very close friends has lupus and I am very familiar with how the disease can affect a person. My mother also died of an autoimmune disorder that she suspected to be lupus. Quite frankly, I didn’t feel I had the courage for what might be headed my way. I wrote my way through the fear. It shook me to my core. I used writing as an outlet to work through how I was feeling mentally and emotionally. Giving voice to all that uncertainty, fear, anger, lingering grief from my mother’s death, it offered a release. Holding it in would have been toxic and without writing through those experiences, I think it would have been like holding my breath – denying myself a chance to exhale and inhale again.
Years later, my doctors are now not sure if what I have is lupus and I am stuck in a place of uncertainty. Naming a thing doesn’t heal it but having no name for it is certainly not better. When the medical industry doesn’t know what to call your condition, it can at times serve to invalidate that experience. Writing, in a way, gives me an opportunity to “diagnose” what I’m going through for myself. It allows me to name what I am experiencing in the truest terms I know and thus validate that experience for myself. I believe those acts in themselves to be good medicine.
In “Haunted”, you discuss how “beloveds… sip [your anxieties] & complain of its bitter.” I know that when I was incapacitated for several months with West Nile virus, my mother was by my side, helping me walk to the bathroom, bringing me cool washcloths for my fevers, cooking for me, and comforting me. How do your interactions with your support network help you live with your difficulties?
My spouse, Anthony, is my biggest supporter. All these health changes began within our first years of marriage – as we were both figuring out what it meant to be married and the roles we would play in that partnership. He holds most things down on the home front so that when my fuel runs low – and it does very quickly – I can take time for self-care. Rest is critically important in managing both Meniere’s Disease and fibromyalgia. Striking the right balance is still very hard for me and, with Anthony’s help, I’ve been able to do a lot more than I’ve imagined I would be able to over these last 5 years.
A thing I wish for within my support network is to have folks – including myself – become fluent in sign language. It’s a beautiful language and it would be such a relief to have a way to communicate that isn’t dependent on sound. When I am going through periods of hearing loss and distortion, it takes a lot of extra energy to keep up with conversation and many variables, like background noise, make it even tougher. I’m anxious for the day when I can just say whatever needs to be said with my hands and converse with others without worrying about words I didn’t hear.
What projects or plans are in store for you now that “Flare” is published?
My husband Anthony and I are in conversation about projects we might do together. Through his company, SKIES THE LIMIT Entertainment, we’d like to find ways to combine my poetry with his skill as a videographer, visual artist, and DJ.
Thank you for sharing such personal information and stories. I look forward to reading and possibly watching or viewing more of your work!
Flare is available from Finishing Line Press for $15.