Boundary Setting for People with Disabilities – Erik Kondo and Sam de Leve

Boundary setting is a problem solving strategy that enables people to deal with and differentiate between awkward, rude, and dangerous people and situations.

As people with disabilities, we are subject to boundary intrusions on a regular basis that stem from other people’s negative implicit bias regarding both our competence and vulnerability. Due to this bias, many people interact with a person with a disability in an intrusive manner that they would not do with a person without a disability.

The underlying social mechanism at play is the belief that a person with a disability is of a lower social class and capability. Therefore, it is acceptable to treat a person with a disability with less respect and deference.  As a result, it is common for wheelchair users to be asked intrusive questions by strangers such as:

  • “What happened to you?”
  • “Can you still have sex”?

It is also common to receive unsolicited comments as follows:

  • “You’re too pretty to be in a wheelchair”.
  • “I could never do what you do”.
  • “It’s good to see you out”.
  • “Everything happens for a reason”.

More intrusive than questions and comments are physical actions that involve:

  • Pushing the wheelchair user without his or her consent.
  • Grabbing and holding the person’s wheelchair without being asked to.
  • Rushing to hold open doors in dramatic fashion.

And there is there ever so common question of “Do you need help?” This question occurs so frequently that it is almost a replacement for the greeting of “Hello” or “How are you?” Regardless of the good intention of the question, it’s implication is very clear. A person with a disability is in a constant state of needing help and the more capable person without a disability should offer it.

This kneejerk response allows the offeror of help to avoid the extra step of evaluating the situation and determining whether help is actually needed or desired. The problem is the implicit bias of less competence that comes loaded with the question. This implicit bias of less competence is not only detrimental to the receiver’s self-esteem, it also has real world implications. Getting hired for a job is more difficult for people with disabilities. It harder for people with disabilities to be in positions of authority since their core competency is questioned.

In addition, competency and vulnerability are intertwined. People who are seen as vulnerable are more likely to be victimized by predatory people. These people are looking for “easy” victims and their implicit bias translates to thinking that a person with a disability is an easy victim. As a result, people with disabilities are more likely to be targeted for predation than a person without a disability.

The above issues are essentially boundary setting issues on both an individual and a societal level. Therefore, it behooves people with disabilities to be able to effectively set and enforce boundaries in awkward, rude, and dangerous situations.

Boundary setting is a strategy that is designed to create respect. Since people with disabilities are starting from a lower baseline point of respect, they need to work harder to create it. Higher levels of respect serve as a deterrent against boundary encroachments and violations.

Many people depend upon Boundary Setting-By-Proxy as their primary means of boundary setting. They require other people and society to set personal boundaries for them. This method works until they encounter the intrusive or predatory person who has no problem violating this low threshold. In this situation, the target must set his or her own boundary or face the consequences of victimization.

Effective boundary setting is the result of the interaction of Respect for the rules of behavior, Communication of the rules of behavior, and Enforcement of the rules of behavior. It is a strategy that takes into consideration that the application of an appropriate level of enforcement creates respect for the rules. It follows Game Theory in that it postulates that certain Under-enforcement actions will create less respect in a form of Contempt for the rules, and other Over-enforcement actions will create less respect in the form of a Backlash against the rules.

Whether respect, contempt or a backlash is created is in the eye of the beholder who is the other person(s) involved. Therefore, there are no absolute boundary setting responses that are guaranteed to be effective. Boundary setting is a systematic strategy of testing and modifying responses as the situation evolves. Responses are situationally dependent. What is appropriate in one situation maybe over-enforcement in another and under-enforcement at some other time. In fact, it is safe to assume that any given response is as likely to be ineffective as it is to be effective in any hypothetical situation. Therefore, responses must be determined via situational problem solving, not by predetermination.

Let’s take a look at a real-life example of boundary setting in action.

Sam is an attractive young woman who has been a wheelchair user for a few years. Here is her story of a recent incident. She is in a parking lot and in the process of putting her wheelchair into her car. She is approached by a man.

MAN: I just want to say you’re an inspiration. You have a nice car, you’re a chick…what happened with your legs?

SAM: That’s a rude question to ask a stranger, don’t you think?

MAN: No! Would you rather I stare at you and not ask?

SAM: I’d rather you do neither! I’m not a zoo animal.

(Sam gets into their car)

SAM: Have…a nice day.

MAN: Don’t be bitter.

SAM: Don’t be rude.

It is important to recognize that these types of boundary setting incidents arise from implicit bias by one or both parties. Successful boundary setting takes this fact into consideration. It also takes into consideration that when a person successfully sets a boundary, he or she gains control of the situation. The ability to control encounters with other people leads to greater self-esteem and confidence. It makes a person feel better. On the other hand, not being able to control a situation leads to lower self-esteem, anxiety, and makes a person feel worse.

Boundary setting is a learned behavioral response. It is a skill. The more you have set effective boundaries in the past, the more likely you are to do it in the future. Conversely, lack of effective boundary setting typically leads to more ineffective boundary setting.

In this situation, it is important to realize that Sam is dealing with a man who is awkward/rude, but most likely not dangerous. Therefore, her boundary setting actions need to take that into consideration.

It is probable that:

Due to the man’s implicit bias of being in a superior social class, he felt he could approach Sam and ask her an intrusive question. It also appears from his choice of words that he is awkward socially. He starts with what he considers a compliment as an ice-breaker and rushes to his intrusive question. 

It is important to recognize that awkward people don’t recognize the awkwardness or rudeness of their behavior. Therefore, when Sam’s enforcement response is to communicate that his question is outside the rules of socially acceptable behavior (rude), he feels he has been over-enforced upon.

Instead of acknowledging his transgression, he doubles down and responds with a backlash. Due to his implicit bias, he concludes that it is not that he was rude, it is that, Sam being a person with a disability, is a bitter person.

For him, a satisfactory result of this interaction would have been if Sam has told him, a complete stranger, the intimate details of her medical history. Then with his curiosity satisfied, he goes on his merry way. His implicit bias has led him to belief that this was a reasonable possibility. Therefore, he was surprised when Sam set a firm boundary.

While it is possible that this man randomly asks intimate questions to able-bodied women, it is much less likely. Sam knows this. And it is this knowledge that is part of her frustration. She is not bitter, but she is frustrated by having to deal with awkward and rude people and situations on a regular basis. But this frustration is countered by her successful ability to handle these encounters. Her effective boundary setting ability is a source of pride that exceeds her frustration. The net result is positive. Had she not been able to successfully set boundaries, these types of incidents would be continuing sources of frustration and anxiety.


Here is Sam’s take on boundary setting.

Women often feel particularly vulnerable in interactions with strangers, and disabled women even more so. It can be all too easy to do or say whatever will end the interaction with the least conflict possible in the name of safety, and many women are socialized to do that. Certainly, as a young person and in the early years of being disabled, this was my approach. The downside of this seemingly easy-going behavior is that it can snowball out of control and result in victimization. It can be mild, like answering questions that you weren’t comfortable answering, to going places you didn’t want to go and ending up in physically dangerous situations.

Effective boundary-setting enables you to politely refuse to do things you are uncomfortable with. Simple, not wanting to do something is a good enough reason. Even if the other person means well. Even if someone has done it before and you didn’t push back on it then. Even if he or she thinks that you’re wrong/childish/manipulative/impolite to set the boundary.

If someone is being awkward, rude, or unpleasant, you are not required to make someone feel at ease by absorbing all the awkwardness and discomfort. Many people are socialized into thinking that this is being polite. But by giving yourself permission to set boundaries, you are allowing your own needs and preferences to matter, not more than someone else’s, but exactly as much. By prioritizing your own needs and expressing yourself accordingly, you can avoid situations where elevating the other person’s expressed wishes leads you into a uncomfortable or unsafe situation.

When I get flustered, I find that I’m more likely to default to conciliatory behavior. For other people, that default may be expressing anger as catharsis for the very real frustration of experiencing these same interactions repeatedly. In order to strike a balance of calm assertiveness, I try to have a set of scripts that I’ve practiced. They roll off my tongue and reflect the tone I consider appropriate for the specific situation at hand. Here are some examples of my scripts:

-When offered unnecessary help, “I’ve got it, but thank you!” If someone continues to try to “help,” I will repeat that script over and over while waiting for them to back off.

-When someone makes an offensive remark, “Oh man, why would you say something like that?”

-Or, as in the incident described above, “Wow, that’s rude/awkward/not very nice!”

By using these practiced scripts, I don’t feel pressured to think of something off the top of my head when I’m already in a socially-fraught situation.

As Erik points out, a given situation may call for a different response, and I tune my scripts and responses accordingly. Even the most calm, polite boundary-setting can often provoke a hostile response- a response is usually powered by embarrassment and/or defensiveness. In situations where I do not perceive my physical safety to be threatened, I am more comfortable with using a higher level of and bluntness. If someone is being rude, I will point out to them that he or she said something rude. Although, it is not always welcomed by my interlocutor, who may react defensively rather than reflectively. But, it may also make him or her think twice before interacting with other people in such a manner again.

In fact, that very deterrent is often treated as a downside for people with disabilities setting healthy boundaries. The thought is: if we do so, those strangers will harbor negative attitudes toward people with disabilities in the future (rather than that they will simply offer fewer unwelcome remarks). This presupposes that the only way for people with disabilities to avoid outright hostility from the people inclined to treat them indecently is to not to set healthy boundaries with them. This would leave people with disabilities in a bind where either they experience intrusive, unwelcome behavior or hostility. It is a worldview that leaves no option for people with disabilities to be treated with decency and respect. It is a cynicism that should be rejected.

Boundary-setting is not at odds with gentleness with those who approach us with courtesy and good faith. It ought not be seen as an inherently aggressive act. Boundary-setting, with strangers just as with other people in our lives, is about creating a shared social context that allows for healthy interactions with the people around you.

Though people with disabilities find their boundaries constantly being tested, it is important to use and apply these strategies continuously in order to learn and maintain the habits that allow for self-respect and invite respect from those around them.

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