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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

Your How-to Guide to Playing with a Disabled Kinkster

September 24, 2018 By Kirsten 5 Comments


More people living with chronic pain, illness, and disabilities are getting into kink and BDSM. There are so many reasons, ranging from relieving pain to owning our bodies to fun. The Centers for Disease Control (CDC) estimates that half of all adult Americans have one or more chronic illnesses which could be disabling.

With so many people using kink with health issues, it’s important to be aware of the best practices for playing with people like me.

Please note: throughout this article, I use identity-first language (e.g., disabled people). It is preferred by most disabled people over person-first language (e.g., person with a disability). Make sure you check with people you’re playing with on language they prefer to be identified by.

Don’t treat us like Inspiration Porn

“Wait,” you might be saying, “I like porn!” Inspiration porn is a little different, and definitely not as fun.

Coined by the late Stella Young in 2012, it describes the idea that disabled people are here to inspire you – to tell you your life isn’t that bad because you can still do XYZ. It looks like that picture of two amputees running in prosthetics, one young and one older, with the tagline saying something about the only disability in life is a bad attitude. You’re supposed to feel better about engaging with these kinds of post because, however bad your day was, at least you’re not ‘them.’ You’re made to feel you can deal with problems you’re facing because it could always be worse.

As Stella Young said in her Ted talk, “I am not here to inspire you. I’m not here to be your one disabled friend.”

If we run into each other in a play space, I’m there for one reason – to get my ass beat, not to inspire you to walk more.

Drop your ableism at the door

Diving into Twenty Questions about disability right when you meet someone is not okay. We deal with that all the time. It’s an exhausting feat of emotional labor that we don’t often consent to doing for others – especially if we don’t know you well (or at all).

Ableism is discrimination against disabled or chronically ill people. Some people use disableism as well. In either case, the assumption is that being able-bodied and able-minded is the norm. Anything outside of that isn’t ‘okay’ or may need to be fixed. A lot of ableism exists in the assumptions about how disabled people live our lives. Comments from people in passing like “Oh, bless your heart – I’m glad you’re getting out of the house. If I were stuck in a wheelchair, I’d probably kill myself!” happen all the time. Sadly, this is a comment a friend received from a stranger at the zoo as I write this.

The idea that people are ‘stuck’ in wheelchairs is already a problem. Wheelchairs and other assistive devices like canes, walkers, and rollators give us more ability to be independent. The only time they become a burden is when an abled person decides they are.

In a kink setting, humiliation might be consensual and fun. Someone dropping an ableist slur during snuggle time and after care isn’t (unless otherwise consented to). I definitely suggest updating terms that you use and switching out ableist words and phrases for better ones.

That includes updating your kink terms, too. An old tenet of kink is that it must be SSC – Safe, Sane, and Consensual. Unfortunately, that leaves out many of us who have mental health issues or for whom kink can never be safe. RACK – Risk-Aware Consensual Kink – is a better term, especially because it doesn’t have those same ableist tones as SSC.

Note: This does not mean you should correct a disabled person on words we use to identify ourselves. Many of us are working to reclaim slurs that were once used against us. I’ll proudly call myself a cripple or other disability slurs. That doesn’t automatically mean I would be down with you using that language towards me. When in doubt, check-in with us.

Don’t use kid gloves, either

Often, when people think of disabled peeps, they consider us children. We’re not seen as being sexual and sure as hell not seen as kinky. I have to tell y’all, though: I have sex. I love sex. I love impact play. These are things that are as much a part of my identity as being disabled or queer or genderfluid are.

If we’re playing and you’re supposed to flog me, flog me the same way you’d flog an abled person. Don’t treat me as anything less than the grown sexy adult I am. Don’t be afraid you’re going to hurt me – we’ve already talked during the negotiation process about how I’ll stop the scene.

To be honest, many chronic pain patients like me wind up having a top tap out or suggest to end play before we do. We might just be the best bottoms… which is totally not biased at all (kind of joking here..maybe).

Be mindful of accessibility needs

Many kink play spaces are not accessible.

Accessibility is different for each person. What I need isn’t what another person needs. Hell, what I need one day isn’t what I need the next day. People’s needs can range from needing a ramp and elevator to avoiding florescent lighting to needing a fragrance-free space and more.

If you’re inviting someone to a space to play, ask them what their accessibility needs are and see if the place you want to go matches up.

Take advantage of the negotiation process

Negotiating a play scene is one of my favorite things to do. It is automatically set up for us to talk about any extra needs or concerns I may have going into a scene. I can share my filled out yes/no/maybe list. Then, I can tell people what words I don’t want used, what it looks like when my PTSD is triggered, and what parts of my body are no-go zones that day.

I can also talk about what to do in case there’s an emergency with my health during play and even guide my play partner(s) through that process. Emergency meds are always nearby, just in case, along with a card that shares medical information.

Use multiple safe words for different things

Safe words are one of the things that the kink world is known for. Most people can name the street light version where red is stop, yellow is slow down, etc. A good chunk of people even know that safe words can be other random words like pineapple or dinosaur.

What many people don’t know is that we can layer these safe words or even use them in everyday conversation.

My husband and I have had to work around difficulties I have communicating about pain, fatigue, mental health, and more. Some of our words are easily identified, like ‘bummed’ or ‘bummy day’ for having an uptick in our depression symptoms. Others are things that usually take a while to explain.

For energy, the idea of spoons or spell slots can be helpful. Gamers might recognize spell slots from video games or Dungeons & Dragons. The idea behind either of these terms is that everyone can only do so much before they have to rest. The problem is that many disabled people don’t get the same number of energy units that others get throughout the day. It’s incredibly nice to have a term we can use that allows us to quantify how completely and utterly exhausted we are. For pain, I always use the comparative pain scale. I find it much more descriptive than the ones we may see in an exam room. For PTSD, I’ll usually just say I’m having a PTSD moment or that I’m triggered.

Consider having codes for these things. Codes for bathroom breaks are a great idea, too.

It’s also important to consider a code move/action  in case your partner goes non-verbal or your play removes the ability to speak. At my dentist – yes, my actual dentist – our code move is for me to lift my left hand. It gives me the ability to fidget with my right hand as much as I need to.

Alter play

You may need to alter things you’d normally do to make them more accessible to your play partner.

If your partner can’t stand long, using a St. Andrew’s Cross while you flog them for an hour isn’t going to work well. Instead, set up pillows on a flat space like a bed for them to lay on their stomach on. That way, you can still access their back while they’re in a comfortable space.

If you have sex furniture from companies like Liberator or Intimate Rider, they can definitely help with positioning. Toys used may need some adaptations or changes, too. Playing with electricity, for example, is a bad idea for people with cardiac or gastric pacemakers.

Talk with your partner about what might work best for them. Personally, I’d probably be happy to stand against a cross for an hour… but I’d also heavily pay for it. Sometimes, that’s both fun and fine. If I have to do anything the next day, though, it can become a problem. I highly recommend not only considering your current health and mental issues, but also your schedule for the days that follow.

Problem solving these issues together can help you and your play partner become closer. It will also help them trust you more, and we all know trust is incredibly important in kink relationships. Honestly, supportive problem solving around my health issues is something that would turn me on.

Communicate!

Honestly, you should know this is important already. It’s vital in every situation to keep things consensual and as safe as possible. Again, it’s imperative to use those safe words and movements you set up ahead of time. I recommend setting up breaks during play for bathroom visits, taking necessary, prescribed medications, to hydrate, and to check-in.

Aftercare

I’m going to be honest – aftercare may look a lot different than normal.

You may need to help us get dressed or back into a wheelchair. You might need to get us secured into leg braces. You might have to help with bathroom stuff. We may need some care in the next few days that isn’t just a text or call.

Aftercare is going to look different depending on what your play partner’s needs are. Make sure that you cover potential aftercare ideas during the negotiation process.

Create a feedback loop

If you’ve played with someone, part of  aftercare should be giving feedback. While most people think about this purely in regards to  sex, it can be integral to play pals, too. Set up a time a few days after play to talk about your session. Ideally, this would be in-person and in a relatively sober, non-play space. Use non-violent communication techniques such as using ‘I’ statements. Furthermore, honest communication and receiving and giving feedback is essential for all players, not just for those that who identify as disabled.

Takeaway

Playing with someone with a disability or chronic illness might not be the same as playing with an abled person. As always, it’s important to communicate clearly and be aware of risks. You may just find the perfect person to play with in ways you never imagined.

Resources

Chronic Sex

Disability After Dark

SexAbled

Ready Sexy Able

CSPH Resources on Sex & Disability

Scarleteen

The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness


About the Author

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, disabled kinksters, fetish, kink, Kirsten, LGBTQ, queer

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