Invisible Illness and Disability: A Complicated Relationship

Happy Monday!

Today I wanted to talk about something that I’ve noticed when I talk to some of my peers and colleagues about my invisible illness. It isn’t something that I can blame them for, but rather a fault of how society has painted disability.

Let me ask you: what do you picture when you think of disability? Really take a moment and evaluate what images and thoughts pop into your head.

If you’re like me, you probably think of something like the handicap parking sign, a wheelchair, or mobility aids like crutches or canes. Now there’s no shame in it. It’s what we’ve been taught. But it isn’t the reality. This article reports that over 42 million Americans have a severe disability, and 96% of them are invisible. Chronic illness isn’t the only category of invisible disabilities, but it is a surprising number.

Why do we think this?

Well, I don’t have the answer. But I have identified some elements.

The Universal Access Symbol

It may have to do with the symbols that we discussed earlier. The wheelchair logo is called the Universal Access Symbol. This symbol has been revolutionary for individuals with disabilities in providing clear signs of access and openness. There is power in having a universal symbol.

I’d like to take a moment and say that I don’t have the lived experience of navigating the world in a wheelchair. This blog supports wheelchair and mobility aid users and the unique access problems they encounter. Additionally, I do not tolerate the rhetoric that individuals who use mobility aids and wheelchairs are “bound to” their tools and their quality of life is diminished because of the tools they use. Often mobility aids are freeing, and allow individuals to live a life with more ease and ability to navigate their environment.

The Universal Access Symbol has been great for the visibility of disability in general- but lacks the representation of many individuals who identify as disabled. I don’t have a problem with the sign itself, but how people have twisted their view of disability to only fit visible disabilities.

There have been efforts to renegotiate the symbol such as this campaign to include invisible disabilities in the access signs. But I believe that there has to be a broader change in how we conceptualize disability.

Disability Theory

There are several ways that society likes to capture the idea of disability. The word theory tends to scare people off, but these models can give us an understanding of how we might be viewing disability now. I promise that I’ve kept it simple.

The medical model of disability states that imperfect bodies need to be fixed. Disability then is defined by the physical limitations that you have. This is the most common conceptualization of disability. In order to be disabled then, your body must be deemed imperfect “enough”.

The social model of disability states that disability is created by inaccessible environments. The body is not the focus, but rather the system that the body exists in. In order to be disabled, your environment is inaccessible to your needs.

Both of these models can be simultaneously helpful and unhelpful. The medical model labels the body “wrong” which creates a message that disability is to be feared, but it can provide helpful diagnostic tools and a community based on the diagnosis. This model creates a barrier to being disabled, a threshold that you have to reach. This can be confusing for someone whose symptoms vary on the day. The social model can be confusing for people like me with chronic pain who, no matter what will experience some sort of physical impact from interacting with any environment.

There is a third confusing element of this is the governmental definition of disability in order to qualify for disability benefits. In the United States, there is a certain threshold of being unable to work to receive disability benefits from the government. These benefits are hard to get and require extensive time and energy. The governmental definition cannot act as a comprehensive definition of disability.

When we choose to view disability only as visible disabilities, these models become blurrier. It can be hard to get a diagnosis for a chronic illness or condition. If your lab tests come back negative, or you don’t have conclusive evidence, the medical model doesn’t help you. If you don’t have traditional access problems that individuals can see (such as ramp access for a wheelchair), people might think that you don’t actually need those accommodations. This is all to say, defining disability based on other people is tough.

By defining disability on your terms, you don’t need to meet certain qualifications or check specific boxes to be disabled. You can identify as disabled if your condition affects your life. Simple as that.

I finally started to say I was disabled when I realized that being disabled isn’t bad and that it could provide me with a community of support and resources. I had to overcome the fear of being disabled before I could identify as disabled. After that, I started identifying as disabled because I could. I wish I had done it sooner. Analyzing my own fears has made me a better individual and helped me understand disability on a deeper level.

No one else has the right to define if you are disabled besides yourself.

Undiagnosed? Go ahead! Varying symptoms? Lovely to see you! In remission? You’re still welcome.

By expanding our own views of how we are defining disability, we can have a part in changing the view of invisible disabilities.

Choosing to or not to identify as disabled with an invisible illness

It’s not fair of me to say that there is a catch-all to identifying as disabled. There are nuances far beyond what I have touched on here.

For example, Andrew Pulrang does a great job of describing some reasons here individuals choose not to identify as disabled such as

• Stigma; not wanting to be viewed as weak or unstable
• Discrimination in employment, medical care, interactions with the police
• Interpersonal relationships
• Emotional baggage

He also lists positives such as:

• Clarity
• Access to accommodations
• Community

For me, identifying as disabled provided closure and finality. It removed the questions surrounding my identity. To me, chronic illness is the condition, and disabled is my identity. I was more easily able to accept my conditions and reach out to others who were struggling.

For those not ready to identify as disabled, that’s okay. But it is important to understand the reason you don’t want to identify as disabled. Is it your own internalized ableism? Is it the risk of losing your job? You don’t owe anyone an answer, but it can be helpful to analyze for your own sake.

Say it with me: disability is not a bad word.

I encourage you to look deeper into your identity and feelings about disability. Let me know in the comments how you came to understand your disability identity and if you’re not quite there yet, what’s holding you back!