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The Disability’s Invisible, But the Pain is Real

September 16, 2010

As you may or may not know, this week is National Invisible Chronic Illness Awareness Week. I’ve written before about the “if you’re not in a wheelchair, you’re not physically disabled” phenomenon so many able-bodied people (and even some with disabilities themselves) perpetuate, but this is another great opportunity to discuss the pain and discomfort (both from the disabilities themselves and the ignorance from others about their existence) that so many of us face.

In light of You Can’t See My Pain, a fantastic post by Leah of Cromulent Words discussing judgments people are quick to make about actions they don’t realize are the result of one or more disabilities, I think it’s important for anyone who’s willing to discuss their disabilities and how they are affected by them. Positive intentions don’t change the harm inflicted on us when someone makes a misstep because of their ignorance, but if we can educate people who are willing to listen, we can work to eradicate the ignorance from rearing it’s ugly head in the first place.

One aspect of disabilities that’s important to understand right off the bat is the Spoon Theory, which describes how the severity of a disability’s effects can vary from day to day. My main physical disability is my left knee (along with the right knee, to a lesser extent), and one way this plays out for me is telling able-bodied people that my maximum capabilities are the lowest common denominator, e.g. “I can’t walk uphill,” even though on a really good day I can do so with less pain. I bet a lot of other people with disabilities can relate to what I refer to as the Lowest Common Denominator Theory of dealing with able-bodied people in their lives, as it’s very hard to have to attempt to explain “I can’t do that today” about an activity that they have seen you previously participate in. Who wants to deal with the accusations and potential to be forced into a very painful activity? It’s easier to avoid the activity in question altogether when around able-bodied people who aren’t functional allies.

One of the most frequent ways having an invisible disability affects me is taking the bus. From the second I walk up the steps onto the bus (which is a separate issue in and of itself), it begins. The bus drivers revs the engine as soon as I’m on, wreaking havoc on my knees as I desperately attempt to maintain balance while tagging my bus card or putting the fare into the machine. This continues for the entire ride if there is not a seat available, and of course no one leaves their seat if they judge you as not having a disability. “No cane? No seat!” Being young with tattoos does not help – I’ve been yelled at to move from a disability seat many times. I can’t even imagine the added damage that has been done to my knee from being forced to stand during many a bus ride over the years. I’ve also heard so many judgmental comments about people who take the bus short distances and how “lazy” they are. Lazy? I would give anything to not have to waste the money, and to be able to get around more easily without pain!

There are countless other daily occurrences that hurt my knee, but I wanted to focus on the “simple” matter of taking the bus, as many people who don’t have a given disability don’t understand that even a molehill can be an obstacle, let alone a mountain. So before you judge someone or assume they don’t have a disability, remember that it’s not up to YOU to decide, and think about the privileged position you’re in if your life allows you to erase the existence of invisible disabilities.

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