Self-Advocacy - Part Two: Empowerment vs. Limitation—or, How to Self-Advocate and Not Be a Jerk
Self-advocacy, as we’ve discussed is understanding your own needs and being able to speak up for what you need and provide alternatives for how to overcome what is presenting as a barrier to you. Self-advocacy is meant to be positive, in that by self-advocating, you should gain a better sense of your own needs and abilities, as well as things that may cause problems for you.
However, the goal of self-advocacy, is to be able to do more, not less. Yes, it is important to be able to self-advocate when you need a break—when you get sick, or when your asthma just sucks. However, I—personally—am not a fan of self-advocacy being used incorrectly, that is, in a way that damages the mindset that most of us with asthma are trying to enforce: that we CAN do things, and we are living the lives we want, while respecting what we’ve got… which is asthma. Self-advocacy can be misused… in which case, I am not sure if it is self-advocacy or self-limitation! Strong self-advocates simply want to be able to do more, by requesting changes to the actions of other people—whether that is asking them to avoid a negative action or assist with a positive action.
Confused yet? I might be confusing myself, so let’s look at some examples. Notice that in these examples, the best responses usually combine ownership of your asthma/responsibilities, alternative actions for yourself or both parties (not just the other person), and/or helping the person understand why certain things may be bad for your asthma.
Empowered: I’m sorry I didn’t get that done yesterday, my asthma was acting up. I just need a bit more time, it should be done by the end of the day. I’ll let you know if I need help but I should be fine.
Limited: Yeah, I didn’t get that done yesterday because my asthma was bad. I’m feeling better but can you do that for me?
Empowered: I couldn’t run yesterday because of the smoke in the air, and things are better but I might need you to slow down a bit—but, I’ve got my inhaler and am ready to try. I’ll let you know if I need to cut it short.
Limited: I had trouble running that one time because of my asthma, so I’m never going to run again. And well, if not running is better for my asthma, then cycling is probably bad too. Go have fun without me.
Empowered: Yeah I’ll go camping, but I need for us to not have any camp fires… I’ll do my best with the nearby sites, and I can bring a mask and extra medicine just in case.
Limited: No, I can’t go camping, smoke bothers my asthma.
Empowered: It makes my asthma worse when people smoke around me, even if we are outside. I’m busy here right now so please go around front. Next time, let me know before you light up and I can move.
Limited: You can’t smoke around me, I have asthma. Now I’m going to get sick from breathing in your smoke.
Empowered: It’s become easier for me to play with the kids outside since I started taking my asthma medicine regularly, but I forgot my rescue inhaler at home and I really shouldn’t do what I normally do without it here to be safe. I can go set up the sprinkler and get the toys, though.
Limited: Can you go play with the kids and get their toys ready? I don’t want to trigger my asthma so I’m just going to sit here.
(That last one may seem far-fetched but I won’t lie to you… I’ve heard of it happening!)
In all of the examples, I think you can easily tell which is more effective, and which the person on the other side is more likely to respond to. Sometimes, self-advocating does mean you’ll have to miss out on something—it’s about compromise—but by effectively advocating for your needs, you’ll get the best responses for your own needs, without making anybody angry, and without limiting what you are able to do!Always remember…
Use your self-advocacy powers for good, not evil!
Do you get muscle cramps caused by your asthma medicine?