Invisible Disabilities Week

Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in. If you like this post, give me a like with the ❤️ symbol below. This will help me get discovered by others on Substack. Drop your email in the field at the bottom and click the Subscribe button to be notified of future posts, or if you want to contribute, I offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕

[Image Description: Against a white background is the blue circular emblem for Invisible Disabilities Week 2024. It includes the dates (October 20-26) and the URL for InvisibleDisabilitiesWeek.org] Image Source: https://invisibledisabilities.org/seminarsandevents/invisible-disabilities-week/

This week kicked off Invisible Disabilities Week, an annual, week-long celebration to raise awareness on all things related to invisible disabilities. As defined by the Invisible Disabilities Association (IDA), an invisible disability is:

in·vis·i·ble dis·a·bil·i·ty

/inˈvizəb(ə)l/ /disəˈbilədē/

noun

People often ask us to define invisible disability. In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings,  false perceptions, and judgments.

The Invisible Disabilities Association is home to a ton of great resources for people living with invisible disabilities too—resources I didn’t even know about until I was researching for this stack. You can buy ID cards and badges to let people know you have an invisible disability so they can help you in any way you might need it.

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Though I didn’t necessarily have the nomenclature for it growing up, for most of my life, my disability could have been considered an invisible one. I’ve always had my limp, but a lot of times people just thought I had hurt myself temporarily, not that it was part of a permanent condition. I also did whatever I could, especially in my teen years, to try and make my disability as invisible as it could be. Pushing myself way too far and doing things that caused me pain, just so I didn’t appear different from anyone else.

Now, at the ripe old age of 40, since I use a walker and a transport chair, I no longer think you could consider my disability “invisible”, but as someone who has dealt with skepticism and having to justify myself for a long time either way, the organization and this week are still something I very much care about and identify with.

Another mom I know who has a son with the same kind of muscular dystrophy that I have, introduced me to a wonderful person named Lauren Pires. She also has muscular dystrophy and like me, she hid it and tried to hide it for a long time. Now she’s out there kicking butt and taking names, making speeches for all kinds of organizations, including the Invisible Disabilities Association. This is one of her fantastic speeches:

There is SO much of my own experience in Lauren’s, and some ways in which we differ too, which is another important part of having an invisible disability, or a disability in general. It’s not one size fits all. Even if two people have the exact same type of disability, they still may have varying levels of pain, strength, challenges, obstacles, etc.

There’s so much good stuff in Lauren’s speech but the thing that really stands out to me whenever I watch it is when she says “I literally don’t have energy to waste on unnecessary things.” People with invisible disabilities are often perceived as being typical on the outside, but there’s so much going on in all of our bodies that you can’t see. Wasting our energy on having to walk too far because of lack of parking, or not being able to use the disabled stall in the bathroom, or having to go up and down even a few stairs can waste that much needed energy (and it takes way longer for us to recover too).

The morale of the story is that you never know what someone might be going through with their body, and even if you think they look “fine” they may not be. The variance of invisible disabilities that exist is far and wide which is why it’s so important that the IDA exists and that Invisible Disabilities Week exists to help raise awareness.