The Edge of Acceptability
How do I become a valued member of the kink community?
Vibe Song:
Author Note
This was originally posted on my FetLife account and the reception was larger than I was expecting. I decided to cross post it to my blog for wider visibility. -> Link to original post
One of the interesting aspects about how I see myself is how I struggle to label myself as disabled. I am both hard of hearing, deaf in my right ear, and autistic. It wasn’t until after my autism diagnosis and reading “Unmasking Autism” that I realized that I could label myself as disabled. When I told my partner about it, they responded, “Because of your ear, right?” Which at that point I hadn’t considered as part of my disability. I had been so focused on my autism that I had forgotten about my partial deafness.
The reason I struggle to label myself disabled is because I’ve always gotten by. Yes, I’ve struggled. Yes, I’ve learned how to have conversations with people while missing every other word and needing to rely on context. Yes, I’ve gotten overwhelmed and needed to go be by myself or leave early. I’ve done these and many other things to exist in spaces that aren’t 100% comfortable for me. And the problem is a lot of spaces aren’t comfortable for me.
Because I can exist in spaces, even for a limited amount of time, it feels like I’m taking a gamble. On the one hand, I’m showing up, hanging out with the people I like, and on other hand I can over do it and need to leave. I can only be in these spaces until I can’t anymore. The hard part is that I don’t know where my limit is until I’ve gone passed it and start shutting down.
Struggling with Discomfort
I’ve always felt a tension when it comes to dealing with my discomfort and removing myself from a situation. A lot of the time I push through my discomfort because I’m afraid of missing out on something important. I’m afraid I’ll miss out on connecting with someone, or a news worthy event. When I do miss out on something or someone I feel hurt and angry with myself for not pushing through to stay longer. So for many years I would push myself to stay way longer than I felt comfortable. And then I would feel that pain the next day.
It’s really hard to describe to people the pain or hangover you experience after you pushed yourself passed your limits. Even as I write this, I hear a voice in my head saying, “What’s the big deal? Everyone does that! You’re just being a wussy!” And I’ve listened to that voice for so many years. But the consequences are too much to ignore now. It’s not fun to have to take an ENTIRE day to recover from a 4 hour hangout where I was masking and using nearly all my brain power to keep up with conversations. It sucks to go to so many events back to back that you need to take a month long break to work your energy back up so you can be around others.
The struggle to fit in and be accepted by your peers in ways that push you too hard is exhausting. And it isn’t just wanting to fit in but it’s the need to be around others. People can be energy giving and it’s awesome. But when you overdo being with that person it’s like you overcharge your battery and it burned out. The feeling is like wanting and needing to be hugged but being touched feels like knives to your skin. So to get that need fulfilled you have to get cut sometimes.
How can I be helped?
I’ve had a few conversations where people have asked about my accommodation needs, how can they best help me feel comfortable. The unfortunate answer is “I don’t know.” I’ve been in Neurotypical spaces and have created so many strategies to be in these spaces that I don’t know what it’s like when the space is built for me. And I’m 100% sure I’m not alone in feeling this way. When all you know is spaces not built for you, you can’t really imagine spaces that are.
In the past I’ve turned to research by organizations like ASAN (Autism Self Advocacy Network) and have just repeated what they’ve found. However, I’ve found their research lacking because it isn’t inclusive of kink spaces, which I don’t blame them for. So how can you create a kink space that isn’t just including disabled but inviting of them?
When I was advocating for neurodiversity at one of my previous jobs, I used a mantra: “When you have a world built for disabled people, they aren’t disabled anymore.” The basic concept is that disabled people are disabled because the world isn’t built with them in mind. There are aspects of society that disabled people cannot access and are at best told, “Sorry, we can’t accommodate you, because it requires too much effort.” What if the effort wasn’t too much? What if it was easy to include everyone?
The question of effort is central in my mind when someone asks how they can accommodate me. I want to ask them, “How much effort you willing to put in? At what point does that effort become too much for you? Are you only willing to put in the effort because you like me or because you don’t want to look bad?” This is the edge of acceptability. This edge isn’t defined, and it varies person by person, organization by organization. At what lengths is a person/organization willing to go to include people who typically aren’t thought of?
Inclusion vs Welcomed
I’ve gone back and forth on using the terms, “including” and “inviting,” on purpose. There is a difference between being included and being invited. When you make sure I’m included, it feels good that you’re making the effort, but it’s dependent on your willingness to make and continue that effort which can change in the future. This is different from inviting because the structure of the system requires little to no effort to “include” people. Those people are welcomed to show up. When I don’t have to depend on you to make the effort to include, it now depends on my willingness to show up.
This isn’t a knock against groups that focus on inclusion, they are very much needed and appreciated. For me, because these groups are often under funded, under staffed, or have high turn over, it makes it hard to feel counted. Whenever I can/have the energy I try to volunteer and give money to these organizations. They are doing great work and I’m proud that they exist in our community.
So what can we do?
I don’t have the answers, and I’m not foolish enough to tokenize myself into believing I can come up with them by myself. Inclusive organizations are a great start for gathering and sharing knowledge but I often wonder how encompassing the knowledge is. Like for physical disabilities there are many obvious things we can point to: ramps, lack of stairs, wide enough hallways/entryways, etc. But what of the little things that make people feel welcomed?
What does a kink space that is welcoming of disabled people look like? I’m fascinated to know what the answer to that question is. If we could construct an idealized kink space, how close could we get to it with our community resources? I understand that there are many constraints that the locale places on our kink community and we are left to gather where we can. I think we can overcome many of the constraints if we put our heads together.
Ultimately, my dream would be to create a “research” group whose sole purpose is to create play parties specifically design for disabled people. And each party we work to understand what worked and what didn’t. We would publish our findings semi regularly for the community at large to learn from. I wouldn’t want this knowledge kept secret if it can improve everyone’s lives!
Conclusion
This is a topic that I’ve been very interested in for a long time now and I’m glad that I finally sat down to put some thoughts together. And as much as I would love to be the driver of this ship of improvement, I unfortunately do not have the executive function to execute on this. I can only support others. This is a hard truth for me to admit.
If you have any knowledge or organizations you would like to share, please add them!