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Nonbinary Access Needs

After mental health problems forced me to take a two month break from working on this article, I have finished it! I really hope these ideas to help others in the way that they have helped me. For me, this is the beginning of a conversation. I’m sure there are other categories and different ways of thinking about this topic and I’d love to see this get used, grow, and evolve! <3

A visually impaired Black person uses a safety rail to guide themself onto a bus. They are wearing a work uniform, head wrap, and prescription glasses. The scene is set at a sheltered bus stop next to a streetlight with a push button and a posted schedule for the bus line. The overall illustration is set in tones of pink, purple, and teal, while warm, yellow lighting highlights the bus interior. Illustration by Sherm for Disabled And Here.

 

The mainstream understanding of access needs is that they are binary—they are either met or not. For example, a multistory building has an elevator or it doesn’t. An event has a sign language interpreter or it doesn’t. A store has a staff person who can carry out heavy items for disabled customers or it doesn’t. While this is an imperfect understanding of access needs, it works okay for some access needs. I’m calling these “Binary Access Needs.” Binary access needs are easy to define, and when they aren’t met, there is a clear consequence.

However, there are many access needs that can’t be understood in this binary way, and trying leads to misunderstanding, judgment, and stigma. I’m calling these “Nonbinary Access Needs.” While nonbinary access needs are diverse, there is something about each one that is more complicated than a binary access need, which is either met or not. For example, rather than not being able to do an activity, a disabled person might have a limited ability to participate that is quickly exhausted. A disabled person might have a limited tolerance for something harmful. The consequences of not meeting an access need might be hard to perceive. Or an access need might not have an easy to define “met” or “not met” state.

There are several types of nonbinary access needs that I want to talk about here. The first type can be called “Limited Capacity Access Needs.” These are access needs that arise when a disabled person has a limited ability to do something. A good example is my back condition. My back has a limited ability to stand, sit in chairs, bend over, and lift objects. If I do too much of these things, my back starts to hurt.

Because there is a real risk of running out of capacity, it is important for disabled people to have control over when and how we use our limited capacities. This includes getting assistance before we run out of capacity, so that we can save it for later. However, in the mainstream, binary view, limited capacity access needs are often judged as less valid based on the idea that people only deserve help when they are unable to do something on their own. I know for myself that it is easy to internalize this negative message and all of the judgments associated with it. Understanding limited capacity access needs has been a powerful tool to help myself recognize the validity of my own experience and push back against the toxic messages.

Similarly, “Limited Tolerance Access Needs” are access needs that arise when a disabled person has a limited ability to tolerate something that is harmful to them. An example of this is my sensory sensitivity that can lead to sensory overload when my limited tolerance for sensory stimulation gets overwhelmed. While a single intense thing can exceed my limited tolerance, like one startling and extremely loud sound, more often it is many smaller things over a period of time, like a sequence of loud sounds.

Unfortunately, any time limited tolerance access needs are about the cumulative effect of small incidents, the ableist, mainstream view dismisses each individual incident as, “Not a big deal.” This makes it hard to get people to take them seriously. But they are serious because the barriers they help create have a big impact on many disabled people’s lives.

It is important to give disabled people as much control as possible over anything in their environment that uses up a limited tolerance. In some situations, this will mean removing certain things from the environment, or at least creating an area where those things are reduced, but it can also mean giving a warning before something happens, providing alternatives, or creating a restorative space people can retreat to.

Another important category is “Hidden Consequence Access Needs.” When hidden consequence access needs aren’t met, there is a negative consequence for the disabled person that is hard to perceive in some way. My wife’s multiple chemical sensitivity (MCS) is a great example of this. When she is exposed to fragrances, like those in perfume, deodorant, fabric softener, soap, and hand sanitizer, she gets sick. Common symptoms are dizziness, disorientation, fatigue, nausea, muscle aches, and migraines. Because my wife’s suffering is an internal experience, people who wear fragrance don’t know that they are harming her unless she tells them. In addition, fragrance that she is not close enough to smell can still affect her, meaning that she doesn’t always know what is making her sick. Another challenge is that there can be a delay between being exposed to fragrance, and the development of symptoms.

As this example shows, it isn’t always easy to know from the outside when hidden consequence access needs aren’t being met. Because the mainstream, binary idea of access needs expects a clear and immediate consequence when they aren’t met, the fact that the consequence is hidden leads some people to dismiss them. Having the consequence be hidden also makes it harder for people to connect their own behavior with the harm a disabled person is experiencing. As a result, many people ignore requests for group behavior change, such as a workplace requesting all employees to go scent free. Because many people assume their own behavior is fine until they are individually told otherwise, the burden of communicating and educating is put on the disabled person.

Because hidden consequence access needs frequently go unmet, they also create a dynamic where the disabled person has to choose between doing something and suffering the consequences of an unmet access need, and not doing it and suffering those consequences. For example, a person with MCS might have to choose between going to a community event and getting sick from fragrance exposure, and not going and experiencing social isolation and missed opportunities. In these cases, the binary, mainstream view can lead people think that a disabled person having a choice of whether or not to participate is enough, but this isn’t equal access. True accessibility is about more than getting disabled people through the door—it is also about ensuring that being present doesn’t cause harm.

Finally, “Cluster Access Needs” are a bit like limited tolerance and limited capacity access needs. They are collection of related factors that individually have a small effect on the disabled person, but that collectively have a big effect. However, with cluster access needs, some of these factors are things that have a negative effect, while others are things that have a positive effect. With cluster access needs, accessibility is achieved by reducing the factors that have a negative effect, and increasing the factors that have a positive effect, but it isn’t usually possible or necessary to completely remove all things that have a negative effect.

An example will make this clearer. If someone wants to make a birthday party accessible to me as a person with anxiety, there are a lot of factors that will make it harder or easier to participate. Things that make it harder for me are large groups, new people, an unfamiliar physical environment, multiple things happening at once, and unclear social dynamics. Things that make it easier are small groups, calm spaces, people I know, a familiar location, introductions that include topics of mutual interest, activities I am passionate about, structured activities, and having a quiet space to retreat to. How accessible this birthday party is to me depends on the number of things that make it harder compared to those that make it easier. Completely removing all things that make it harder isn’t necessary and might not be desirable.

Meeting a cluster access need often involves discussion and negotiation. Because none of the individual factors in the cluster are requirements, the mainstream, binary understanding of disability usually dismisses them. Part of the problem is that the mainstream view wants to treat each individual factor like an independent access need that is either required or not, but it is the whole cluster that is the access need, not the individual factors.

Cluster access needs have an inherent flexibility that is both a benefit and hindrance to getting them met. Because none of the individual factors are required, each situation can be handled differently based on the needs of everyone involved. This is especially helpful when dealing with conflicting access needs. However, negotiating every situation individually uses up a lot of time and energy. In addition, if the disabled person is in a situation where the factors are discussed individually, rather than as a cluster, it can be hard for the disabled person to advocate for themselves. There is social pressure to be compromising and not “make a big deal out every little thing.” But if the disabled person compromises too often, they could end up without getting their access need met.

The goal in talking about limited capacity, limited tolerance, hidden consequence, and cluster access needs is to describe patterns that frequently come up, but are rarely recognized. I have given these patterns names because naming things can be a powerful way to change how we think about them. But it is not the name that matters—it is the idea that different access needs follow different patterns. Knowing about these patterns can make a big difference. It certainly has in my life; I now feel better about my own access needs, understand them better, and can communicate more clearly about them.

When applying these ideas, please keep in mind that these patterns are not always clear and separate. They can overlap, and many disabilities will have access needs that simultaneously fit more than one category. For example, MCS frequently involves both limited tolerance and hidden consequences.

In addition, I think it is important to recognize that most binary access needs aren’t as binary as they might first appear. At the very least, there is usually a gray area between being met and not met. For example, a conference can have a limited number of sign language interpreters, reducing the participation options of deaf attendees. A large building might have ramps and elevators, but only one wheelchair accessible restroom, making it more difficult and time-consuming to access. Or a building’s only accessible entrance could be a side door that is kept locked, making disabled people dependent on others to let them in.

On the most basic level, this all comes down to understanding that access needs aren’t like an on/off switch. There is hidden complexity in even the most simple-appearing access need, and different access needs follow different patterns. Access needs are as diverse as disability itself and being aware of this diversity is crucial to meeting access needs and creating a more accessible world.

 

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