Some people get it. Some people don’t–especially when it comes to disability. Assumptions and misconceptions are frustrating. But it’s hard to play teacher and educate those around you.
On the other hand, you might try to explain, but sometimes the other person still can’t relate to or understand your disability. Among other things, people without disabilities may not understand…
So, what can you do when people in your life don’t relate to your disability? Let’s talk about it.
First, it may be helpful to define what exactly a disability is.
Disability refers to “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”
Disabilities are not always physical, nor are they always visible. The general public understands some disabilities more than others. So even if they have some information about certain disabilities, they may not know that your condition or concern is actually categorized as a disability.
When people can’t relate to or understand your disability, it often comes from stereotypes, inaccurate information, or lack of information as a whole. When true prejudice is not the culprit, explaining may clear any misunderstanding.
To start, we will talk about explaining your disability to people who don’t relate. Then, we will discuss what to do about the unfortunately common situation where people still do not understand. There are ways to find peace with this, even if it can’t be avoided.
You never have to “explain yourself” when you’re disabled. But if those in your life can’t relate, you might both feel better after an illuminating conversation.
The way that you explain your disability to other people may depend on a few things. These include:
It can be helpful to have a script for what you are going to say when you want to explain your disability or a particular need related to it. Think about it beforehand. For example, “I take medication for X. Sometimes, it impacts my short-term memory. If I ask the same question twice, know that this is why and that I am really listening to you.”
Let’s say that you are ready to explain a disability to someone: a date/potential partner, a friend, or someone else. One popular, well-received explanation of disability that you may have heard of is the spoon theory.
The spoon theory is a popular concept online that many people in the disability community use to explain levels of energy and/or ability. In the original post describing it, the author explains what it is like to live with Lupus by handing a friend a limited number of spoons (each spoon symbolizing the energy a person has to get through their day). She takes one away with each task to provide a visual for allocating energy or ability when you’re disabled. The internal and external resources you allocate may be more limited than that of a non-disabled person.
Read the original post here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
This is where the term “spoonie” came from. Spoonie now refers to a person with a condition, who has a limited number of spoons or energy to use throughout the day and must distribute them wisely. Where someone without a disability may have enough spoons to take a shower, brush their teeth, prepare meals, tidy the apartment, and see a friend, someone with a disability may have to choose one or two of those tasks. If they don’t, they risk physical injury, burnout, future incapacitation, etc.
In the original spoon theory article, the author’s friend develops a greater understanding of Lupus.
This is, of course, the best-case scenario. The person you’re talking to gains a better understanding of your disability, your needs, your symptoms, or anything else that you want them to know. However, many people with disabilities come to find that some people simply won’t understand.
Some people won’t understand. Know that that’s not your fault. Some people have more trouble than others putting themselves in other people’s shoes.
Many of us with disabilities have developed a great sense of empathy–a sense of empathy that some (not all, but some) non-disabled people don’t have.
So, what do you do when people can’t relate and don’t want to get there? Here are some answers.
Here are some ways to cope with that lack of understanding:
When someone can’t relate to your disability–and seems to have trouble learning or emphasizing–you may start to feel exhausted, frustrated, unheard, and so on.
If the energy you expend to explain is starting to affect you negatively and it feels like you hit a wall over and over again, it may be time to accept that this person is not going to get it. This acceptance prevents you from spending valuable energy that you could use to take care of yourself. Why waste your spoons on something that only causes frustration and distress?
If this is a person you’d usually turn to for support, turn to another source instead (another friend, online forums, a peer support network, a local meetup, etc). Set boundaries. Limit time spent with them or the topics you discuss with them. Setting boundaries and the need to modify relationships will look different for everyone. The goal is always to preserve your emotional health and energy.
Validate your own feelings and experiences. This could look like, “I’m sad they don’t understand, but I have done what I can do on my side. They aren’t in a headspace where they can grasp this, but there are other people out there who get it.” It could also look like saying to yourself, “even if they do not understand my need/my symptoms/etc., I know that my experience is real.”
This is perhaps the most important thing when someone in your life doesn’t understand. Lack of empathy from others, especially loved ones, weighs heavily on your heart. Say that you’ve tried to explain a disability to a family member or even a medical professional who is inexperienced in the area. They made you feel misunderstood, judged, or unheard.
That experience in itself can cause trauma. So counteract it by making sure that you have (or start looking for) support. This could be other friends, meetups, support groups (online or face-to-face), a peer support network like Supportiv, or counseling. Alternatively, start in a low-commitment way by following disability activists online or consuming media (podcasts, books, YouTube videos, etc.) from others who live with a similar disability. This can help you feel less alone and more empowered.
Say that you are a non-disabled person who is on the other side of all of this. You want to better understand another person’s disability. Keeping in mind that not every disabled person wants to be an advocate or teach others what’s going on, here are some things you may be able to do:
Whatever you do when someone doesn’t relate to your disability, make sure that it is for you. You may not be able to change someone who does not understand, but what you can do is protect your own wellbeing, extend compassion to yourself, and seek connection with people who do relate to your experience.