Disability isn’t just about ability.
I’ve been reflecting lately on my emotions about my chronic illness and chronic pain, because … well … I’ve been very emotional! I’m frustrated that life changes imposed by the pandemic shutdowns have been extremely difficult, knowing that if I were able-bodied, these changes would be much easier.
I’ve realized that the days when my disabilities are at their very worst aren’t defined by how much pain I’m in, how debilitating the fatigue is, or how bloated my gut is. These are my worst days because of my emotional response to what is happening to me.
To account for my feelings about disability, and the layers of my disability experience, I came up with this diagram:
Let me break it down….
The innermost layer is how I feel about my conditions. I put this in the center because it’s a deep part of disability that can be hard for people to see. It’s most often hidden inside. These feelings might include:
The surface layer is all about what I can and can’t do. This is on the outside because people can see me using modifications or look at my arthritis deformities. This layer of abilities can involve:
- what’s done differently
- variances in disability
- avoiding triggers
- anticipating & creating modifications
The layer surrounding me represents the disability experience that’s literally outside of me. It’s how other people think of and react to me. I drew arrows pointing in because these perceptions come towards me and become part of my disability. Disabling perceptions might be:
- stigma (including blaming, shaming)
- blanket associations with another who has same diagnosis/condition
- noticing physical or behavioral differences
- pressuring with “solutions”
The takeaway here is that disability is about more than just ability. Other people’s responses affect us. Also, there are components that we often keep hidden. While not everyone’s “bullseye” looks the same, our “disability experiences” all have layers.