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Kink and Managing a Disability or Chronic Illness

July 5, 2021 By TAC 3 Comments

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I have always known life was unfair. We see examples of it everyday; I experienced and have observed it here in the US and many countries abroad. Fair is in August at the fairgrounds, there is no promise of it anywhere else. Knowing this, it should not have been a shock when my charmed life was upended almost two years ago by this principle.

Before I go much further, this article is not going to be about how you should or should not let your disability get you down, what you should or should not do in kink regarding it….. It is about me, and my challenges. Hopefully by letting you read about them (for the normal folk) you will be a bit more patient toward us gimped up people. For those of you who do face challenges, maybe you can find some humor and hope.

But I digress. 

Almost two years ago I was diagnosed with Multiple Sclerosis. One morning I woke up and had no control over the left side of my body, had a hard time focusing or forming words, part of my tongue was numb, and half blind. Obviously, my better half was concerned especially since I struggled for a half hour to get myself together for work, like a dumb ass. After Nibbles threatened to knock me down and call an ambulance I relented and went to the hospital willingly. 

Honestly, at that point, I thought I had a stroke. 

The First Week

You guessed it, lots of tests: after several MRIs, CAT Scans, blood tests, an EKG, and two ultrasounds later I was diagnosed with Multiple Sclerosis. The neurologist put me on some high-octane drugs and steroids through an IV and I spent 5 days in the hospital. Time enough to contemplate and fear just how much my life had suddenly changed. Including kink. I was afraid I would never walk again, let alone be able to guide a needle or throw a flogger. The pit of despair I was falling into was immense. If it had not been for Nibbles and one other, I think I would have given up right then.

They reminded me I had a life to get back to no matter how that looked on the back side. We would figure it out and find our new normal. 

Getting My Feet Back Under Me

The first few months at home I began to get back most of the motor function I had lost. Weaker than I had been before, but able to get things done with a cane and taking extra time. Movement was still slow, delayed. I remember one morning looking at my coffee sitting on the dining room table thinking my way through picking the cup up and taking a drink. Gone were the days, at least for a while, where I could just respond to my desire for that liquid. Everything was now a process. 

And apparently, while I was not looking, I had become as fragile as a Faberge Egg. Every movement watched, being completely catered to, and my attempts to help out being rebuffed. I was allowed to do almost nothing for myself and I did not have the strength at the moment to fight it. So for once in my life, I did as I was told. At the time it was a great source of butt hurt for me. Now I have to look back and laugh at this sudden role reversal between myself and Nibbles. She was now in charge, taking on the dominant lead, and took the phrase mother hen to a whole new dimension.

Slowly I improved and over time I got back to more normal activities, well normal for me. Practicing with a flogger to see if I still could, a single tail, as well as other toys. Hell, I was not allowed to mow the lawn so might as well beat a pillow or two! And I did. 

I found that I could passably work with my right hand with some effort. Florentine was completely out of the question and working from my left, we’ll just say I resembled a penguin with palsy. Even I had to laugh. But I kept practicing.

Tigers Hate Cages…..Even if They Are Gilded Ones

The first time back to the club, I might as well have stayed home! NOBODY would let me do anything but sit. Playing was not happening as a rotation of hens, now a squad strong, made sure my glass was never empty, my plate always had a “healthy” choice on it, and companionship was never more than twelve inches away. Now under normal circumstances, this might sound like I had hit the jackpot. Died and gone to heaven. Even to this day I am appreciative for all their help (that night and many others). In the moment, I was frustrated. 

The big cat had finally made it back to his part of the jungle to be told he could not hunt. Doing the only thing I could, I put on a pleasant face and entertained those around me. From sunset until nearly three in the morning, I talked about whatever came to mind or was of interest. By the end of the night my voice was horse and throat so sore I wanted to jam a popsicle down my neck and leave it there. The experience gave me a new appreciation for the ladies who like to spend hours at a glory hole. Troopers one and all.

OK, So I Was Wrong – Changing My Perspective

If it is not apparent, to escape my coddled purgatory I needed to change how I approached things so those around me, acting out of a deep sense of care, would allow me to do what I do. Without hurting their feelings. I worked long and hard at home practicing with a couple of different floggers to make sure I was proficient enough to not embarrass myself or hurt someone. Finally satisfied with my progress, I talked to Nibbles and one of my play partners about setting up a scene that weekend. 

I do not think I have ever, in my life, had to run such a gauntlet consisting of the number of variations and iterations of the question, “are you sure?” in my life. 

I would rather have gone back through a military promotion board being grilled by senior non-commissioned officers for three days than repeat that hour or so of the concerned looks and expressions of uncertainty. I was certain, I was ready, and damn it……. If they let me….. I was going to do it. Thankfully, they relented. I had a date!

I realized though all that was happening, I was going to effectively earn their trust all over again. Not that they did not think me capable, kind of, but they did not want me to take on too much too soon and somehow goof myself up again. 

Friday night came and off to the club we went. On the 30-minute ride Nibbles made sure to remind me as often as every other mile marker not to overexert myself, to keep drinking water, and that it was ok to stop and sit down if things got too much. Bless her heart, really. I think she was way more nervous about my scene than I was. Being the legend in my own mind, I was focused on making my chosen bottom cherry red from her shoulders down.

What really happened was I did overextend myself. I had a great time doing it, but the bottom was more concerned with how I was doing the entire time than just being in the moment. I think I spent more energy redirecting her back into position and to focus than I did swinging the floggers. No matter, I was back. All uphill from there. Just nobody told me it was going to be five miles, barefoot, in the snow, and into a headwind.

Yes, I was going to have to earn their trust again. So, in the moment they could focus and not worry that I might collapse into a pile of unresponsive goo. How?

Learning to Just Be Me Again – With a Twist

The problem was not theirs it was mine for the most part. They had every reason to worry because I was not displaying the self confidence in myself needed to inspire their confidence in me. I had to set aside the thoughts of what I could not do well anymore, and focus on what I could, as well as find new ways to function. That included kink.

The next several months were focused on what I could relearn, building a different muscle memory, or new ways to do old things. Short play sessions to put theories into practice and help reconnect with Nibbles and other play partners. Giving them an opportunity to relearn me also and show them I was not just trying to be better, I was getting better.

The more I worked on myself and worked with them, my self confidence grew and returned. They worried less about my physical state and started to enjoy play with me again. I rediscovered the joy in it. I guess old dogs can learn new tricks.

A Weird Blessing in Disguise

No, I am not the person I was before MS reared its ugly head. But what am I going to do? Give it back? There is nothing to do but be the best me regardless of the circumstance. I would like to think, in some perverse way it pushed me to be a better top and dominant, even though different. It forced me to look at myself, kink, and my partners in a new way. Shoving me out of complacent patterns allowing me to be more creative. 

The support of Nibbles, and everyone else around me, gave me purpose to push myself harder. Certainly, I could not have done it without them and their encouragement. As annoying as it might have been at times, I could not have asked for a better life partner and friends.

When it all first hit, I lost faith in myself. I doubted what I could do and if I could do. However, I learned as long as I kept pushing forward, the details would take care of themselves. That to claw my way back I needed to trust myself again so my partners could trust and confidence in me.

Tagged With: bdsm, bdsm community, bdsm play, bdsm relationship, bdsm scene, disability, disabled kinksters, fetish, kink

BDSM & Disability: Challenges

December 16, 2018 By Kink Academy 2 Comments

Don’t miss this insightful video by Kink Academy with Robin Wilson-Beattie

Click here to check out Kink Academy and this video

 

Tagged With: bdsm, chronic illness, chronic pain, disability, fetish, kink, Kink Academy

Interview with Kirsten from Chronic Sex

September 17, 2018 By slave_bunny 4 Comments


Can you tell us a little about your background? How did you get involved in this line of work?

I’ve been disabled/chronically ill since I was five years old. Throughout high school, I was that friend who would go with friends to Planned Parenthood and talk to them about their sex lives or being risk-aware.

 

How did Chronic Sex come about?

In college, I studied world religions, history, and politics while writing a blog about what it was like to be invisibly disabled. After a few years of writing, organizations and companies got interested in what I was saying. I would occasionally write about how my health was affecting my sex life – those posts continue to get a good amount of traffic. In 2015, I went to a conference where Lucky Tomazeck of Tool Shed Toys talked about sex education. At this conference, I was really surprised to learn how much people didn’t know about chronic illness and disability regarding sex. Because of the lack of information out there, I started Chronic Sex later that year.

 

What is Chronic Sex’s mission statement? How does Chronic Sex go about accomplishing this?

The Chronic Sex tagline is ‘because sexuality doesn’t depend on ability.’ I really want CS to be a resource for people to learn more about disability, sexuality, relationships, and more. I believe that sex (at least in part) is about how we treat ourselves and others. With this being said, a big part of what I talk about is self-love and self-care. While most of the work is on the site, I also host the Chronic Sex podcast and social media chats about these topics when I’m not traveling to host workshops or trying to learn how to rest.

 

How does your work relate to kink?

I’m a bit of a newbie with kink. That said, I think there’s something to be gained from learning with someone as they document their journey. By sharing how kink helps with my chronic pain, I’ve been able to inspire other people to try kink out to see if it’s something that might help them.

 

Is kink a part of your life? If so, has it helped you in any way?

It’s a big part of my life, but not in a conventional way. A conference I went to had a kink exhibition that I was really interested in attending. I wound up spending a lot of time at the impact play station. After being flogged, caned, and whipped, one of my chronic pain conditions – fibromyalgia – stopped being so painful. At this time, I was in the middle of a flare-up (or a period of exacerbated/worsened symptoms) and was in so much pain that it hurt to wear clothing. After the impact play at the conference, I had complete relief for about six weeks and have had lesser symptoms since getting a flogger myself.

 

What are your goals going forward with combining your personal life and/or Chronic Sex with kink/kink education?

The biggest thing I want to do is show just how helpful kink can be. For me, it can be super sexy and fun or something I schedule into my week as a part of my pain management plan. I’ve met so many other people who use kink as a form pain management or even like therapy as well. In short, I want to help the lift the stigma surrounding kink.

 

How has being queer affected your worldview?

It’s helped me to become much more of an activist. I understand things like privilege and marginalization so much better because of the interactions of my identities such as queer and disabled. Most of all, it’s helped me find my people. There is nowhere else I’d rather be than with my queer and disabled pals. We get each other in ways no one else can, and also can help others understand us better when we work together.

 

To you, what does being queer mean? How does it differ from other identifiers in the LGBTQ Community?

Being queer isn’t just a sexual orientation. If I were to specifically name my sexuality, I would say that I am pansexual (or that gender doesn’t factor into who I’m attracted to). I’m genderfluid. That means that I’m non-binary and don’t really have a specific gender expression (or dress masculine versus feminine). To me, being queer encompasses not only both of those identities, but also my disabilities and politics. As someone who isn’t happy to hide my identities for the comfort of others, I tend to be happy subverting the system and making people question their assumptions.

 

Do you believe that there is a known overlap between the LGBTQ Community and Kink Community? If so, what is the overlap? What about for the Disabilities Community?

Absolutely! I think there are a lot of people who don’t necessarily think about these overlaps or realize they exist – but they do. If someone has a chronic illness, that can be considered a disability depending on how they identify. That means someone with asthma, autoimmune illnesses, or cancer might call themselves disabled. I would say that it’s relatively impossible that someone doesn’t know a kinkster who could be disabled. The same definitely goes for the LGBTQ+ community.

 

Do you find that a decent amount of individuals with disabilities are also interested in kink and BDSM? If so, how can the Kink Community make kink and BDSM more accessible to them?

There are definitely a lot of us who are disabled and into kink. A few things to keep in mind:
– Not all disabilities are visible.
– Accessibility needs can include wheelchair access, low/no-scent policy, and being mindful of allergies among many other things.
– Don’t make assumptions about a person’s ability to consent to something without having a conversation with them. Many disabled people wind up being infantilized or made to feel like a child. Part of this is due to the  assumption that we don’t engage in kink or that we’re automatically asexual. Many of us are, but many of us are proud and queer and kinky sluts too.

 

What is your personal motto? How does your work in sex education and writing reflect this?

My motto is ‘Do no harm but take no shit.’ It plays into how I interact with everything in the world. Is X company promoting ableism (discrimination against disabled peeps), other bigotry, or harmful misinformation? If so, I’m going to call it out and point out the issues with it.

 

What would you say is your greatest goal at large? How do you want to go about accomplishing this?

I want people to know that they’re worthy of having amazing relationships and mind-blowing sex no matter what disabilities they have and/or challenges they face! So often many of us forget this due to self-esteem or other issues. Once we realize we deserve more, we can work towards getting that.

 

What new projects/endeavors are you currently working on? How will these benefit the communities at large?

One thing I’m working on at the end of this summer is a literature review of research around kink and chronic pain. There is some out there, but it’s not easily accessible. I’m hoping that pulling information together will help more people gain access and start thinking of kink outside of the box. I’m also hoping it leads to lessening the stigma around kink as well as giving other disabled pals an idea of something that might help them.

 

Why do you feel that sex education is so imperative? What do you feel needs to be talked about more?

I feel like a big part of it is that we need to normalize sex – and not just sex, but good sex. Despite all that I know about sex, I still find myself falling into ideas like it’s normal to have painful sex – and it isn’t. The more we talk about sex and dispel the misinformation around it, the more we can take steps to have better sex – and take care of ourselves.

 

In your opinion, what is the biggest stereotype concerning sex, kink, LGBTQ, disabilities, etc. that needs to be dispelled?

The biggest thing that goes across all of these categories is that it’s never okay to assume things about others. Someone who is queer may not love to wear rainbow gear. A disabled person may not ‘look’ like they’re disabled. Kinksters might be goths or soccer moms. The only way we can learn about other people is through communication- not judgment based on appearances.

 

Any closing thoughts?

I’m so grateful to be able to share these ideas and what I’m working on. Hopefully, people find something helpful within it!


About Kirsten

Kirsten Schultz is a sex educator and writer. Through their work as a queer disability activist, they have earned a reputation for tearing down barriers while mindfully causing constructive trouble. They know how hard it can be to live a full life while dealing with health issues, so that’s why they work most closely with people living with chronic illness or disability, helping them to rediscover their lives after diagnosis.
Kirsten has worked with organizations all around the world, including Healthline, Pfizer, and the Arthritis Foundation. In addition, their work has been featured in articles from publications such as US News, Broadly, HelloFlo, Bustle, and Everyday Health.
Kirsten holds an MS in Healthcare Administration from Utica College. You can learn more about them and their work at chronicsex.org and on Twitter @chronicsexchat.
Links:
www.chronicsex.org – Chronic Sex
kirstenschultz.org – writing site
facebook.com/chronicallysexy – Chronic Sex on Facebook
twitter.com/chronicsexchat – Chronic Sex on Twitter
instagram.com/chronic_self_love – Chronic Sex on Instagram
pinterest.com/chronicsex – Chronic Sex on Pinterest

 

Tagged With: bdsm, Chronic Sex, disability, fetish, kink, Kirsten, slave bunny

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