What is Self-Advocacy?
Doing a quick experiment, I just tossed the word advocacy into Google Images. While it didn’t quite bring up images of protests and things like I’d thought (after all, ‘advocacy’ should have a positive ring to it, and even Google seems to get this!), it did bring up a lot of things that seemed to symbolize making noise, yelling, and force… Megaphones and bullhorns, and fist-pumping among several images including fragments of dictionary definitions of advocacy.
Among them, however, was an image I quite enjoyed: a maze--because there is a lot to advocacy that you have to figure out by yourself.
What is self-advocacy?
Advocacy is defined as public support for or recommendation of a particular cause or policy”—in turn, an advocate—is a person who acts to promote the needs associated with the advocacy activity. Still with me? Sort of? Okay, it’s about to get personal—AKA about you—so, stay with me even if you’re still a tad confused.
As a person living with asthma, it’s important to know a bit—or a lot!—about your disease, your needs, and your rights (and the responsibility you have!). Every time you voice your thoughts or feelings about living with asthma that have a direct impact on your life, you are self-advocating.
Similarly, advocacy doesn’t have to be a huge thing—every time you educate someone on the realities of asthma, even if that’s just through living your life, you are acting as an everyday advocate. My friend Heather once used, if my memory serves me correct, the term 'quiet advocacy.' This was in reference to her blue beaded bracelet with a phrase important to her in morse code included in the pattern, to share her journey with type 1 diabetes without saying a word until someone asks about it. However, I think quiet advocacy is something we often do without realizing it, and why I like the term so much! Self-advocacy is about communicating your needs and your rights so that you can stay healthy: it doesn’t have to be overbearing, or include a microphone!
Self-advocacy is about taking ownership of your disease, and yes, maybe taking a few extra steps to ensure you stay as healthy as possible, even if that affects the actions of others (however, as I’ll write about next, self-advocacy should not only be used to cause burden or difficulty to others!). Problem-solving is a big part of self-advocacy; I’m sure you’ll agree that if you are asking someone to not use fragrant cleaners that affect your breathing, they’ll be much more likely to agree to the change if you offer them an asthma-friendly alternative!
Self-advocacy is individual: it is hard to find a definition of self-advocacy that is appropriate for all people because it is based on personal circumstances.
Based on the research by Brashers, Haas and Neidig (2000), I’d summarize self-advocacy as:1
Learning about or being educated on your disease and treatment options; taking initiative to access this information independently; understanding your needs and being respectfully assertive in ensuring your needs are met, making suggestions for change, asking questions where necessary to ensure you understand the perspectives of others and/or why an action is being considered, and alternatives to this, if available.
How do I practice asthma self-advocacy?
Consider the application of this summary in a variety of different scenarios in your life—when your coworker insists on using an air freshener in the lunchroom; when you think your asthma could be managed better and you are visiting your doctor; if you are a parent and your child’s teacher insists on students using chalk in the classroom; when a friend goes to light a cigarette; when your friend with a cat invites you over... How do you choose to respond to things that might be a challenge in the context of your asthma? Self-advocacy is, at its core, about problem-solving, not problem-making!
I’ll be sharing more on self-advocacy in upcoming posts, including how to self-advocate respectfully and effectively. The key is this: self-advocacy is about knowing your needs, communicating effectively, offering solutions (not just complaining about how much things suck!), and sometimes being willing to compromise (and sometimes, you may just have to leave the situation… this makes a point, too!), doing all of this with respect for the other person or people involved.
There's no straightforward path when it comes to self-advocacy--akin to life with asthma, self-advocacy is a maze to navigate! What questions do you have about self-advocacy, or what challenging situations have you been in regarding your asthma, and not known how to effectively deal with? Let me know in the comments, and I’ll try to address them there, or in a future post.
Have you ever gotten "moon face" as a side effect of prednisone?