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…
- what you can and can’t do, and how that may change or fluctuate. For example, some people may need a wheelchair on some occasions, but not others.
- your physical and emotional needs: “extra” rest, accommodations at work or school, and so on.
- that there are some things you can’t control. Well-intended people may, for example, suggest that you try yoga or tell you about a dietary restriction that helped another person in their life, offering miracle cures and “helpers” that you know do not work for you.
- your boundaries (“please don’t give me medical advice,” “please don’t talk about my body,” “please don’t touch my device,” etc).
So, what can you do when people in your life don’t relate to your disability? Let’s talk about it.
Disability facts that some might not understand
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.
Explaining your disability
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:
- How often you see the person. If you will never see them again, for example, you may choose not to take the time to explain. If they are in your daily life, however, you may be more likely to determine that it’s worth it to explain and assert your needs.
- The exact relationship. For example, your professor or boss will need to know different details to accommodate you than a loved one may require to support you emotionally.
- Their willingness to listen and receive information and/or boundaries. This includes a person’s capacity to accept that you are the expert in your condition and may not benefit from certain sayings or suggestions (i.e. “disability is a state of mind” or “if you are positive/drink water/take supplements” it’ll go away).
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.”
An example of an easily-understood explanation…
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.
It isn’t your fault if people don’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.
How to cope with lack of understanding
Here are some ways to cope with that lack of understanding:
1. Use radical acceptance.
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?
2. Modify the relationship if you have to.
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.
3. Affirm what you know is true.
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.”
4. Seek support to grieve their lack of undestanding.
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.
For those on the other side
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:
- Listen. Listen to the person in your life when they talk about their disability and understand that they are the expert in their condition. If they say they can’t do something, accept that as true. One of the best ways to be an ally is to believe people and listen to what people with disabilities say.
- Learn – and confirm! If someone in your life has a disability, consider researching it to learn more. Sometimes, there’s a lot of information out there. And, of course, even with the same disability, people might experience it differently. It can be a very touching act of care for another person to say, “Hey, I decided to look into (insert condition here) to better understand. I was wondering if this is true in your case?”
- Ask. If someone is open about their disability and talks about it, don’t be afraid to ask questions rather than assume, especially if it is someone that you are very close to. Respect it if people don’t want to talk about something. You might gauge this by saying, “it’s totally okay if you don’t want to talk about it. I know that it can be a lot of labor to explain. If you are open to sharing, I was wondering how to support you/how this affects your life, etc.” Again, this is not something to ask a stranger on the street. This is more for close or ongoing relationships.
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.