My last couple posts have been about misophonia, and I’m sure you all are starting to get bored but I have one more post in me related to the topic so too bad for you. BUT I am not going to be focusing exclusively on misophonia here. Instead, I’m going to use a common occurrence for folks with misophonia to talk about a larger issue: competing access needs.
What Are Competing Access Needs?
Scene: you have misophonia. You’re chilling with one of your friends, who you happen to know is autistic, and they pull out a fidget cube. They’re going to town on it, clearly having some happy stimmy time, and it’s making this noise. This awful clicking noise. This triggering, infuriating, misophonia causing noise.
What do you do?
This is an example of competing access needs. One person needs the fidget to accommodate their needs, the other person needs the fidget to stop in order to accommodate their needs. How do both people access the space? How do they spend time together without being total assholes and making the other one miserable?
Well there’s a possibility that they can’t. It’s a lovely idea that every space should be accessible to every person. But in reality even that ideal can exclude some people. As an example, let’s say there’s a gay couple who in order to feel safe would like to be able to hold hands, or openly acknowledge each other as partners. On the other hand, perhaps there’s someone who is deeply offended by gay romance and finds a space unacceptable if there are openly gay people there. These two people cannot be welcomed into the same space without one of them feeling unsafe or unwelcome.
Most often competing access needs gets brought up in regards to safe spaces, and the kinds of beliefs and discussions that people want out of particular groups or organizations. But when we’re talking disability, I think things get a lot more practical and a lot more in your face. Let’s say I’m an autistic who has a deep desire for visual stimulation and you’re an autistic who has seizures when you’re visually overstimulated. Can we safely exist in the same space?
I’ve experienced this a LOT recently as someone with misophonia in a room with many people who are physically disabled, and who don’t have the greatest control over their facial muscles. Often this results in some very intense mouth noises, especially when food is involved.
Ok, so this is a problem in a lot of places. But what do we actually DO about it? Is it a problem we can solve? Is it a problem we want to solve?
From what I can see there are two main approaches to dealing with diverse needs. One is to try to make every space universally inclusive. The other is to create many specialized spaces that cater to particular needs. In my mind, neither of these is a perfect solution, but if we are going to meet the most needs of the most people, we should be aiming to do some of each.
There are certain spaces that require as universal a design as possible. This includes public spaces like schools, libraries, government buildings, etc. I think we should be explicit about this, and that the people designing and organizing in those spaces should talk to community members to determine the biggest things they can do for accessibility (including but not limited to ramps/elevators for mobility accessibility, non flourescent lights, noise dampening materials to deter echo, using microphones, translators, and closed captioning, etc.)
In contrast, there are other spaces that are set up to cater to certain people and certain people’s needs. A GLBT group is there to cater to the needs of GLBT individuals. These spaces are typically explicit, but the problem comes when people within that group have different needs and folks are not explicit about which need they will cater to. One example of this came from Unit of Caring, who was one of the first to talk about competing access needs. They say that as a gay person it was very helpful and important to them to actively engage with the idea that being gay is inherently negative to humanity. There was a part of their brain that believed this, and they needed to parse through the arguments to come out feeling validated.
In contrast, most gay people I know find the very suggest offensive. There’s nothing inherently wrong about these different needs, but what is wrong is throwing all these people together under the guise of “queer support” and getting mad when someone gets hurt. It seems reasonable to me to have a process if someone wants to have a conversation that may distress others in a group setting, so that those who want to participate can and those who don’t can find support in their own fashion. To me, that would mean being explicit in the guidelines and introductions of any given group that people may have different needs, asking people to think before bringing up potentially painful and damaging topics, and having a way for someone to suggest a smaller group to deal with things like that.
There will of course be times, both in smaller groups and in more universal settings, where one need must be prioritized over another. In an ideal universe this would never have to happen, but in real life, it seems to me that there are some guidelines we can follow to decide whose need gets our immediate priority until we can accommodate everyone.
First, I would prioritize health concerns the highest. Your need for a strobe light stim does not trump my strobe induced epilepsy. If one person’s need to stim or access or talk will physically injure another person, the injury takes precedence. An interesting example of this to me has to do with the intersection of eating disorders and animal rights. I have had vegans come at me about eating meat, but cutting meat out of my diet is a recipe for me to fall into my eating disordered patterns and seriously injure if not kill myself. My need to remain healthy is more important than the discomfort that animal rights activists feel about meat.
Second, I would look at immediacy. Does the need or desire have to be fulfilled right now, or can a person manage for a little bit? For example if I am on the verge of a major meltdown and need a stim toy, but the sound of my fidget sets off your misophonia, I would prioritize the person about to meltdown in that moment.
Third, I’d look at the importance of the need: does it make you feel more comfortable, or will you simply be unable to access the space without it? I could access most spaces without accommodations it would just be really unpleasant and drain me quite quickly. Someone else who needs a ramp or ASL interpretation to be able to use the space at all would take priority in my mind.
And finally we’d also have to look at cost. Some things simply can’t be done without resources, and if those resources aren’t available it can be difficult if not impossible to make a space accessible.
So if you’re a group or a convention or a public space that’s looking to find ways to be careful about allocating your resources for accessibility, that’s what I’d look at if you can’t be accessible to everyone. I think it’s also important to be explicit. If you need to use a microphone and loudspeakers to make an event accessible to hard of hearing people, then also say or write that you recognize it can be a sensory difficulty for some people and offer a quiet space in addition. Having a policy that is written and available that allows people to make requests about accessibility, and lays out what you’ve chosen to prioritize and why goes a long way towards starting the dialogue and for more formal spaces that seems like the best way forward to me.
But all of this started because of a question that had nothing to do with conferences or support groups. It had to do with someone who has misophonia and wants to be able to hang out with their friends who fidget. Who gets to say “please stop” or “no I really need this”?
Again I think talking is the first step here. Sometimes there’s an easy solution, like a different fidget that doesn’t make noise, and all you need to do is mention it. I’d recommend checking out part two of this series for how to bring up your misophonia, but if you feel comfortable with the person who’s competing for access with you, this is a great time to start a conversation. Everyone has the right to express their needs and wants in this situation, but I encourage people to weigh how their own accommodations affect others.
I think the same ideas that can guide larger spaces can hold to some extent here. But I also think the discussions don’t need to be as explicit. You can talk to your friends and navigate each individual situation based on who has more spoons at any given point, whether one person feels like they can handle things without accommodations, or whether someone really does need some help.
I’m not going to get into tons of specifics here because there are so many permutations of types of accommodations, but if you have specific troubleshooting you’d like to brainstorm, drop it in the comments.
This post is already getting too long, but I am going to make it into a two parter because I’d like to get into one very specific area of accommodations and competing access needs and that is living space. What if two people live together and both have accessibility needs? How do you manage? We’ll get into that next week along with some other exciting topics.
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