By Shanna Katz
This month, Out of the Box is featuring Jey – please note link is to a FetLife profile and is not safe for all works. Jey has many identities, one of which is as a person with disabilities/disabled. Throughout the interview, Jey shares a lot of both the triumphs and tribulations that comes with the PWD identity, as well as how it intersects with other identities in their life.
This interview is about your Person with Disability/being disabled
identity… What are some other identities of yours:
Define your PWD identity – what does it mean to you, how long have you had this identity, how was the process of getting there?
It means to be being ill, being tired, in pain and restricted. But it also means having a shorthand way of accessing literature and resources which may be supportive in dealing with day to day challenges and the bigger picture.
I haven’t identified as having a disability for a terribly long time. Maybe about eight months. I have been ill for longer, but it has gotten worse since about December.
I think I actually came across the concept that someone with chronic illness could identify as/be
considered disabled in your www.essin-em.com blog. Something kind of clicked and it made sense that I having a disability was a useful way to frame things. This was before the illness had the downward turning point. It made sense to me that getting sick for two or so days every week, or every two weeks, was quite disabling. It’s an odd thing to feel positive about – the realization that you have a disability, but it seemed fitting.
What are some of the positives of having this identity?
As mentioned it’s given me useful language for understanding myself and uncovering resources. I’ve also found some sense of solidarity and empathy in reading forums and disability blogs. It can be incredibly reassuring to read about others’ day-to-day struggles. I guess I feel less alone.
I’ve developed an increased admiration for my grandmother. She has had rheumatoid arthritis for decades. She rarely complains. She’s amazing.
When I first started playing with my boy I was ill. But not as ill have become. I’m sure it’s been a strain on him, but it’s also been somewhat of a test of his care and dedication. He has shown himself to be amazing and supportive. I am so lucky and grateful every day for his presence in my life.
What are some of the struggles that have come along with this identity?
I’ve lately found it terribly frustrating traveling on the train and bus into work. I don’t have to go in every morning, which is very fortunate. I sometimes have to stand on the bus and train. This is a huge downside to having an invisible disability. I am exhausted by the time I get out the door. I have to walk my dog in the morning, shower and get my stuff together. I like to sleep on the train if I have a seat. I will often sit on the floor. If I have to stand, I’m incredibly exhausted by the time I get to work.
I’m an introvert so socializing is hard for me anyway. Add anxiety, fatigue and sometimes pain. I don’t get out much at all. If something’s in the evening I have to walk my dog first, shower, get ready then head out. This is terribly draining. Showering always zaps all my energy. Then the socializing is exhausting. It’s incredibly important that I don’t isolate myself too much – that has a negative effect on my depression and anxiety. But getting out and about is really, really hard.
I have very little energy. This means I have little energy for sex. This makes me sad for me and my boy. He’s been amazing. I am truly blessed.
How does this identity fit or not fit with your other identities?
I struggle participating in kink activities. I have not given my boy a good flogging or spanking in months.
This saddens me because I enjoy doing that. I just don’t have the energy or strength. I feel I read and think about kink more than I do it. I get frustrated and down. I try to do other activities that require less energy, but I still feel like I’m letting my boy and myself down. On the flipside, masochistic play helps hugely with my pain and anxiety. Thus, in these ways having a disability both clashes and converges with being a kinkster.
The difficulty socializing issue also applies to attending kink and queer events.
Full time employed academics work incredibly hard. They teach and work on research projects, articles, grant applications. I feel like I could never work full time. I comfortably manage about 20 to 25 hours of work a week. I question if I can still call myself an academic while working casual research projects and very occasionally thinking about or working on my own research.
I have fears about my ability to continue to be a good dog parent. My dog hasn’t missed out on much exercise and always comes first, but I worry I won’t be able to walk him twice a day and give him the care he needs if I deteriorate.
How do you feel this identity is received in the sexuality and/or sex positive communities?
I haven’t received any negative attitude, but I don’t think there is a huge awareness of disability in the local kink community. Most events are at nights. This makes things difficult for me. When I attend events, I often notice locations aren’t wheelchair friendly. Often there is a cap on attendance. Due to my varying levels of fatigue and pain, I can never confirm that I am attending anything until the day. This often rules me out if the cap has been met. I could always put down that I am attending, and not show, but I loathe disappointing people. I would definitely like to see more discussion about disability in the
local kink community.
However, I did have a positive experience recently. Coming up to the annual records night for our region, I’d expressed interest in participating in a record that was on the fairly extreme edge of play and something I’d never done before. I explained to the people that were conducting the activity that I might not make it on the night due to illness and if I do make it, I might not be able to participate. They were understanding. Just before the activity I was presented with a question sheet and I needed to disclose if I had any of the conditions listed on the sheet. I told the people what I had. They nodded and understood, but this did not exclude me from participating. The day after the activity one of the people who were administering it wrote a beautiful post acknowledging all those who participated. When mentioning me she acknowledged my struggles and uncertainties and commended me for taking part. I really appreciated this.
I’m not involved in queer activism and organizing very often, but student organized events are usually a bit more mindful. They might try to arrange sign language interpreters or ensure there is disability access at an event. I find the university environment fosters a greater awareness of diversity.
What else do you want people to know about this identity?
Don’t assume that just because someone looks young and fit that they are well. I’m tall and have a reasonable build. I’m 27. Cash-register attendants often pack my shopping bags as they would for a fit-looking 27 year-old. This means they are a struggle for me to carry. I think assumption is the main point here. Invisible disability means that people could be struggling.
I can’t speak for others but I do enjoy socializing, in small doses. But it’s hard for me to get out. I do appreciate people willing to come and visit me. If you know someone who is ill or has difficulty getting around the place, ask if they would like a visitor – even for an hour. It could make a world of difference.