graphic by kayleigh woltal
Disclaimer: For the purpose of concise language, I will primarily be using the term “disabled” when speaking of both people with disabilities and chronic illnesses. Many people with chronic illnesses do not consider themselves disabled, and many do. It is up to each individual person to decide how they want to identify. Please note that not all people with chronic illnesses are disabled, and not all disabilities are due to chronic conditions.
When it comes to conversations about disabilities, able-bodied people often default to accessibility. They launch into speeches about the need for proper ramps in front of businesses, the importance of alt-text, functioning elevators and the general lack of accessible spaces. This is all, obviously, incredibly important — but there is so much more to being a disability ally than advocating for accessibility.
Sometimes the people who engage in conversations about accessibility are the same people who question disabled people about the way they live their lives. I follow several disabled creators on social media and have seen countless comments reading, “Why do you make your disability your whole personality?” It is this kind of reaction to disability content that causes so much emotional turmoil. If one of these creators talks about why they are using a mobility aid, they’re a downer who dwells on their disability, but if they refuse to talk about it, they’re secretive and mysterious.
This is where general disability and chronic illness awareness comes into play. While you might feel like you have a lot of knowledge and empathy for disabled people, if you ever find yourself thinking that maybe someone is dwelling a bit too much and that they should try to be more positive, even if it’s just a tiny thought tucked away in the back of your mind, then you still have more to learn.
It is important to understand that these people who “make their disabilities their whole personalities” aren’t trying to. Obviously, a lot of creators that post about their disabilities are doing it to promote awareness or as an educational tool, because able-bodied people should have a grasp of the nuances of disabilities. But even those who aren’t trying to teach are not posting about their disability for attention. In reality, it is a common way of coping.
Many disabled people are continuously learning more about their own disabilities and coming to terms with their new normal. For many disabilities, like those caused my chronic illnesses, there is no cure, and thinking about living the rest of your life with, say, chronic pain or deteriorating muscles or worsening cognitive function, is daunting. On top of that, many disabled people are forced to schedule their lives around things like doctor’s appointments and physical therapy. When disabled people feel like every aspect of their life is being consumed by a condition, many just want to do something to feel more in control. In many cases, their disability becomes a focal point of their own life to make it feel like it is a part of them rather than something that is hindering them. Somehow, by talking about it more, they feel free.
Understanding that disabilities can be a part of every single aspect of someone’s daily life is so important. Imagine being told to stop talking about every experience you’ve ever had with a close family member, or to stop talking about anything that has ever stemmed from a moment in your childhood. You would feel like you’re being told to stop talking about something that shaped you into who you are today. This is exactly why many disabled people often have such a hard time finding a balance in talking about their disability and keeping it to themselves. It is such a major part of them, and while they don’t want to seem annoying, they also want to be true to themselves and better understood by others.
Even outside of a social media creator standpoint, this idea of balance affects daily lives, relationships, and the confidence of those with disabilities. Personally, I am always afraid that if I talk about my chronic illness symptoms too much, I’ll be too repetitive and people will get tired of hearing it. However, if I don’t talk about it at all, no one will ever understand why I do some of the things I do.
This further expands to a common fear that disabled people have: feeling like an inconvenience. I make myself crazy trying to balance being transparent and being easy. I never want to be the person who inconveniences others, but I also need to do what’s best for myself. For example, if I walk with friends in the city and we are in a rush, speed-walking up and down hills can easily cause a flare up for my joints. However, I don’t want to make my friends late because of me, so I end up choosing being courteous over protecting myself. This thought process is incredibly common in those with disabilities. Many disabled people develop a fear of being a burden towards others, causing them to either hurt themselves more in the long-run, or isolate themselves from others to avoid conflict entirely.
Now, it is not your job to monitor your disabled friends to make sure they are not over-exerting themselves, but it is your job to make sure your disabled friends know that they can tell you the truth about how they are feeling. Create a safe space and assure them that you are not going to see them as a burden for advocating for themselves.
Another major thing you can do to be a disability ally is to check your biases and acknowledge other people’s biases that drastically affect the mindset of disabled people. Personally, I can walk, I can run, I can dance, I can eat on my own and I do not use mobility aids. Because of this, I have been accused of being dramatic about my chronic illness several times, like when I express that I can’t hold a pencil. Well, I can’t hold a pencil on my own. Without something stabilizing my DIP joint (the first knuckle), it bends back so far that I physically cannot hold a pencil steady enough to write with it for longer than about five minutes. That’s not drama, it’s just the truth. But the idea that I was being dramatic stems from a harmful thought process when it comes to disabilities: People assume that if you can do some basic tasks like walking, you must not be that disabled, so you must be able to do all of the other basic tasks like holding a pencil. This idea that there are “levels” of being disabled leads to people thinking that some people are “not disabled enough” to use any extra tools. A common example of this harmful thought process is people accusing ambulatory wheelchair users of faking or dramatizing their disability because they are not paralyzed. They don’t think those people are “disabled enough” to need a wheelchair.
Even if you do not personally engage in these harmful thoughts, it is important to recognize that there are many people in the world who do, because unfortunately, this thought process can foster internalized ableism (when disabled people either consciously or unconsciously project society’s negative views on disabilities onto themselves) in disabled people, creating more harm to both their bodies and their mental state. For example, someone who can walk but could still benefit from a mobility aid may go on for weeks, months or years without seeking help because they have convinced themselves they’re not “disabled enough” to actually need it, all while their pain only gets worse, as does their anxiety over how they might be perceived by able-bodied people.
This is especially important to think about regarding the language used when asking people questions about their disability, chronic illness and the tools they use to manage them. For example, I was recently asked why I need a medical ID card to explain my chronic illness to first responders. This could just be a question someone had because they wanted to learn more, but then I heard “those are for people with severe allergies.” Immediately, because of the countless ableist remarks I have come across about not being “disabled enough” or “sick enough,” I started spiraling. They’re right. Why do I need a medical ID? I don’t have any life-threatening allergies. My chronic illness is a mild case. Maybe I’m just being dramatic and it’s not really that serious. If I get this ID card, it’ll seem like I’m just doing it to be special. See, if the question had ended at why I needed the card, I would have simply explained that I am supposed to avoid certain medications to reduce risk of further injury and that my neck is unstable, so if I am in an accident, however minor, I need to be more thoroughly checked than an able-bodied person. Instead, once I heard that medical ID cards are not typically for people like me, I questioned everything I was confident about just a moment earlier. That kind of language can feel accusatory even if it was not intended to be, because disabled people have heard it in an accusatory tone so many times before.
The last thing I can say that is paramount for being a disability ally is trying your best to be empathetic. Recognize that living with a disability can be incredibly difficult both physically and mentally. Understand that not everything can be helped with accessible tools. No matter what mobility aids I might be able to use, no matter how many gadgets I buy to make my life easier and no matter how much I educate others on my chronic illness, living with a condition I know will never go away and can always get worse will never not be exhausting. No matter what, I will never not grieve for a life I could have had every time I put myself into a flare for simply acting my age. No matter what, disabled people will always juggle between good days and bad days. Recognize that being a disability ally is more than just knowing the importance of accessibility, because accessibility alone isn’t everything when it comes to disabilities.