Why I Hate the Word Invisible

Alright, I admit it. I hate the word invisible. Not the word by itself but mainly when the word invisible is paired with the words illness or disability. I do get why people use these terms. For those of you who are not familiar, the terms invisible illness and invisible disability are referring to illnesses and disabilities that are not readily visible to others. In other words, you can’t tell that the person has a chronic illness or a disability just by their outward appearance. In that aspect, using the word invisible makes sense and it helps others to realize that not all illnesses or disabilities have to be outwardly seen in order to be valid. I still hate it though because the word invisible also means something else. It additionally means not openly acknowledged or made known, not able to be recognized or identified, not noticed, not appearing, and unobtrusive quality. To me, I am not any of those things. I am here, I am present, and I will not go gently into that good night (unless I want to).

The reason why I hate the word invisible when talking about illnesses and disabilities is that historically, and even currently, people with chronic illnesses and disabilities are marginalized. We are often pushed to the side, not recognized, not accommodated, ignored, discriminated against, and more. Historically, people with disabilities have had to battle centuries of biased assumptions and harmful stereotypes. This stigma has led to social and economic marginalization of individuals who have chronic illnesses and disabilities. In the 1800s, people with various chronic illnesses and disabilities were often shut away in institutions or asylums where they spent their entire lives. They were also forced to undergo sterilization that they did not consent to. All of this was for the “betterment” of society but what it did was render those individuals invisible; hidden from a fearful and biased society. This marginalization continued for decades. Even in the 1930s, 40s, and 50s, when more technological advances were developed, there was still this notion that those with disabilities were abnormal and shameful and were still denied access to things like transportation, telephones, bathrooms, stores, and other buildings. In other words, we were locked out of opportunities and rendered invisible to society. It wasn’t until the 1960s and 70s when disability rights activists began to lobby and advocate to not be invisible that laws were finally put into motion. Finally, it wasn’t until 1990 that the Americans with Disabilities Act was at long last put into place. Nineteen ninety. That’s not that long ago folx.

Even with all of the successes of the disability rights movement and even with all of the successes of advocacy and the work of activists, we still see marginalization and discrimination against people with chronic illnesses and disabilities. I see those stories first hand from others all of the time. People fighting with Human Resources for accommodations, people fighting for their lives during the COVID pandemic, people fighting with friends and loved ones to be seen and heard, people fighting for acceptance and inclusion in various industries and various capacities. In many ways, we are still invisible. Not to mention that, for those of us living with illnesses and disabilities, those are not invisible to us. We live with it everyday. The symptoms are there everyday. The medications are there everyday. The fight to have a meaningful and productive life is there everyday. The fight for others to recognize us and our struggles and work with us and not against us is there everyday. It is not invisible to us.

While I do understand the usefulness of the term invisible to convey the notion that not everyone will have the outward appearance of an illness or disability, I am hesitant to use the word invisible for so many reasons. Frankly, I don’t know what other word to use but I think the number one reason I don’t like it is we shouldn’t have to hide who we are and what is a part of us. We shouldn’t have to hide the fact that we need accommodations, medications, and other services to live. We shouldn’t have to hide the fact that we need support and understanding just like everyone else. We shouldn’t have to hide.

Therefore, when it comes to the term invisible, I, for one, tend to not use it. I have chronic illnesses, one of which is considered a disability under ADA, and I am not invisible. You shouldn’t be either. Whether you choose to use the word invisible or not is up to you (and no shame either way) but I encourage you to think about the historical implications of the word and to reclaim it as something that is empowering rather than disempowering. Let’s reclaim our identities and reclaim our place in society as valid human beings worthy of living a meaningful life in whatever way that works for us because the last thing we need is to continue to be invisible.