Advocacy Starts With Being Kind to Yourself

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by Ari Anderson |

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Today, I thought about the question, “How can I become a better advocate?” For the first time, I realized that I’d taken part in advocacy activities even when I didn’t know it. This is how it happened.

I like to buy and download turn-based PC games. In these, I can take as much time as I need to click the mouse controls without the risk of losing. This is opposed to real-time action games, where you have to click and use your keyboard as quickly as possible for your character to survive. Over the past eight or nine years, I’ve probably bought over 100 turn-based games.

Yes, I know, it seems like an excessive amount of money spent on more games than I know what to do with. Perhaps this cash could have been having a positive impact on the rare disease community instead.

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About a decade ago, when I first started playing PC games, there weren’t that many turn-based programs out there. People found them too slow and boring. Gamers had become too accustomed to fast-paced shoot-’em-ups, which required little thinking ahead and strategizing. When game developers see what people want, that’s where they place all of their creative efforts.

Slowly but surely over the past few years, tastes have started to change. More and more, gamers started to like having those extra minutes for strategies before completing their next turn. Such trends can be seen in popular game franchises like XCOM.

Disabled gamers like me helped to spread this trend of accessible gameplay to the general public. Now it has really caught on, and people are seeing that there is money to be made in this market. Therefore, developers are getting even more creative in making games accessible.

Take, for example, Painted Waters by Numinous Games. This new game is made specifically for children with disabilities caused by diseases such as spinal muscular atrophy (SMA). In its test phases, it was even played by SMA advocate Jack Freedman, 26, who just passed away in October. Jack gave the developers his advice on how to make the game as user-friendly as possible for people with SMA. Hopefully, the SMA and other rare disease communities will now be asked more often how to make fun activities more inclusive.

Let’s recap. A decade ago, I and others started to buy a ton of slower-paced strategy games that weren’t even designed to be played by people with disabilities. This encouraged the rest of the general public to try them, thinking it can be fun to play games where you have to think first before you react. This in turn increased the demand for and expectation of many more accessible games.

Fun and games certainly aren’t everything in life. Still, advocacy is advocacy, and I did it just by spending money.

So when I think to myself that I’m not doing enough, I need to stop being so hard on myself. I wrote before on how I have a lot of personal growth to do as far as being kind to someone when I feel angry. Maybe when it comes to that practice, I should start with myself.

SMA News Today columnist Katie Napiwocki sometimes gets frustrated with herself and her weak cough when she gets sick. Then she remembers that she needs emotional support just as much as she needs physical support. It all starts with the way she treats herself.

She gives herself kind words by saying, “My cough is weak compared to medical standards, but it’s mine nonetheless, and it’s OK if I require help to infuse a robust vigor of leverage.”

So let me pose the question again: “How can I become a better advocate?” Although doing things to help others is important, it’s not the only way to advocate. As I just explained, I already do that without even thinking about it.

I’m learning that true advocacy starts with how much kindness I show myself. This in turn spills into how I treat others. When we wrap ourselves and everybody in our lives in the same category of kindness, that’s when we can really change the world. It also helps us to be stronger when lifting burdens off other people.

Let’s all take time to exercise our inner kindness muscles together. We’ll thank ourselves for it!

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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