What People With Invisible Disabilities Really Wish You Knew
Living with a less immediately visible or less widely understood disability can often be lonely, in part because our friends and family members don’t always know what our experience of the world is like. When you have an invisible disability, you’re simultaneously burdened by ableism, or discrimination against disabled people, that exists in the world, while also having to constantly explain to others that you have a disability and educate them about it. I have Ehlers-Danlos syndrome, a genetic connective tissue disorder, and I’m autistic, both disabilities that are not always immediately apparent as soon as you meet me.
If you’re a friend, family member, or ally to someone with a less visible disability, here are a few things that we wish that you knew. Understanding these things will make it easier for your disabled community members to feel close to you, and it means that we don’t have to spend as much time and energy on basic explanations of how the world sees and treats us.
Disability is not inherently negative
That’s right: Disability is not a bad thing! As award-winning editor and writer Wendy Lu, who has bilateral vocal cord paralysis, GERD, migraines, and anxiety, says, “I have several disabilities and I have a rewarding career, a supportive relationship, and a fulfilling life. Those things are all compatible with disability, unlike what many of us are taught to believe from a young age.”
Many disabled people also experience joy, pride, and an experience of community as a result of their disabilities. One of the things I love most about being autistic, as Julia Bascom wrote about on her blog Just Stimming, is the joy that engaging with the world often gives me. As much as it is challenging being autistic in an ableist world that wasn’t designed to accommodate me, I have also never felt happier and more aligned with my true self than when I’m happily stimming, or doing self-stimulating behaviors like flapping my hands or feet to regulate my senses, because I’m looking at beautiful foliage on the New England trees each autumn. Because I’m autistic, I have an incredibly rich sensory experience of the world, and not all of it is negative, like lights that are too bright or sounds that are painful. Sometimes I’m engulfed by the brilliance of confetti falling to the ground, or the feeling of music reverberating through my bones. It is a feeling that I can compare to no other, and in those moments, I’ve never been more grateful to move through the world as an autistic person.
Our disabilities don’t stop being a part of our lives
Kelly Dawson, a writer, media consultant, and disability advocate with cerebral palsy, put it best when she said, “Life with a disability is the steady undercurrent of my life. People think of disability as something that‘s only important when they notice it. There’s so much about my life that’s experienced specifically because I have a disability.”
Every disabled person is so much more than just our disabilities, and yet, they are always present in our lives and they show up in every decision we make. I can’t simply turn “off” being disabled just because it would be convenient. My disabilities are constantly an undercurrent of my life, which means that when I’m going about my daily life, my disabilities are always a factor. That means something as simple as making plans with a friend is impacted by my disabilities—I’m going to research how to get to wherever it is our plans are, I’ll be looking into the accessibility of the experience we’re about to have, and I have to keep in mind weather, my own pain and fatigue levels that day, and whatever medications or mobility aids I might need to have available on myself. If I decide that I’m going to a sunflower field with a friend, I might bring my cane because I expect to be on my feet for a long time, and I’m likely going to pack water and medication in case I need it. I also have to plan for meals and rest breaks throughout the day.
There’s no such thing as ‘normal’
This is a fact that was also illuminated by the COVID-19 pandemic: There is no such thing as a normal way of being, and life is always on the brink of shifting based on a variety of factors. It’s also par for the course when you have a disability.
“Disability has shown me that there is no default or ‘normal’ way of being,” explains Lu. “Living with a disability is not a static experience. It is dynamic and ever-changing. Some days are great, and other days are more difficult.”
Not only is there no such thing as a normal to compare ourselves to, but even for an individual person, there might not be a normal. I experience days and weeks where the symptoms of my Ehlers-Danlos syndrome are more present and harder to ignore, and it’s not always predictable. I can go through a flare-up for reasons I’m not even aware of or no reason at all, leaving me more exhausted and in more pain than I expected to be in. Sometimes it means canceling or adjusting my plans accordingly to accommodate my disabilities.
“I think being disabled is being kind to your body,” adds Dawson. “It’s understanding that there are going to be days when it doesn’t function the way that you would like.”
Public life is not designed to accommodate disability
When you’re disabled, you move through the world with an inherent knowledge that public spaces are not designed for you. Public transportation such as planes, buses, trains, and airports may or not be easy or even possible for you to use. You could encounter a restaurant and find out you can’t get inside, or can’t sit down or use the bathroom once you’re in.
“Public life is not meant to accommodate disability,” says Dawson. “There’s a sort of awareness of the world around [us] that I don’t think a lot of nondisabled people seem to have. Their surroundings can fade into the background simply because those surroundings were built for them to use however they like.”
If you have a disability, your life is constantly shaped by a lack of accessibility in public spaces. Every time I go to a concert with a nondisabled friend, I’m reminded of the fact that our surroundings can become a background to them in a way that they never will for me, because I’m always concerned about accessibility. Will there be seats or places for me to rest if I get tired? How difficult will it be to use a bathroom quickly if I need one? How hard is it going to be to access my medications, will the venue give me a hard time about bringing in my medications or my mobility aid? How fast am I going to be able to order and get water if I need some, whether I’m thirsty or need it to take an emergency medication?
These are questions that are not necessarily top of mind for nondisabled people, so they can go somewhere like a concert or a large event without even thinking much about the venue. Since public spaces aren’t always designed to be accessible to disabled people, I have to do research and ask questions to even enter a space. When nondisabled folks go with disabled friends to a public place or an event, it can be helpful if they’re thinking ahead about these accessibility concerns as well. If a friend of mine points out that where we’re going is somewhere I can get to by public transportation, that shows me that they know enough about going out in public with me that they’ve already researched this and care that I might need to take the train there. Similarly, looking into whether a space is wheelchair accessible, has stairs, offers closed captioning, is accessible to blind or visually impaired folks, has a varied menu of food options, is a particularly loud environment, or has an accessible bathroom stall are all examples of ways nondisabled people can be proactive if they’re going out with a disabled friend.
We have to think about whether we’re ready to tell you about our disabilities
If you have a less immediately obvious disability, then you’ve existed in the space between meeting someone and disclosing your disability to them. Every time I make a friend, get a new job, attend a public event, and so on, I’m faced with decisions about disclosing my disabilities. It often comes down to whether I need to ask for an accommodation, such as the case of a workplace or attending an event, or if I want someone to be a close person in my life, in which case I recognize that a basic understanding of my disabilities will be necessary to continue the friendship.
This is challenging for people with less immediately visible disabilities, because we’re not always directly asked about our experiences with disability and we are assumed nondisabled. When I’m using a mobility aid such as a cane, the dynamic changes, and people immediately assume I’m disabled and may or may not ask what condition I have. If I’m not using one, I’m almost always assumed to be nondisabled because I’m young and have no other visible differences.
“Because I have both visible and invisible disabilities, oftentimes people assume my physical, visible disability is the only one that exists,” says Lu. “Our societal definition of disability is quite narrow and often excludes many health conditions that, in fact, are mostly invisible: chronic pain, diabetes, mental illness, cancer.”
Disclosing a disability can often feel like a risk. I know that once I tell people I’m disabled, the dynamic between us might change. They might decide they no longer want to bother trying to be friends or that I’m not worthy of being at this event. It can be beneficial when, after disclosing a disability, a friend reacts by not dismissing me, and following up on future plans so that I can see this hasn’t changed our relationship. If they don’t change the subject immediately and ask a helpful follow up question, like, “Is there anything I can do to make our plans more accessible for you in the future?” that tells me that they care about my disability but they’re not going to make it into a big deal.
“The dynamic of disclosure is that the nondisabled person gets to decide if it’s worth their time to continue,” explains Dawson. “I grapple a lot with how much to share with someone new in my life about my disability. You’re constantly thinking, when will they have enough? When will this be too much? I’m learning how to unlearn that.”
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