I Don’t Want to Be an Advocate
But the alternative is harder to face
I’ve been really focused on my advocacy efforts lately since the first World Narcolepsy Day was on Sunday, September 22, 2019.
But I don’t want to advocate for narcolepsy awareness. What I want to advocate for is people treating other people as humans. I want to advocate for the idea that we are all equally valuable and worthy regardless of our abilities, productivity, health, or any other aspect of who we are. Accepting people exactly as they are, is the simple solution for pretty much all the advocacy needs I can think of.
Taking medication to cover up the fact that I’m human and I’m flawed sucks.
Sure it would be nice if people could understand how I feel, and I want them to recognize the symptoms so they don’t think I’m being lazy or blowing them off. But if they just accepted me and accepted themselves, would knowing the symptoms be necessary?
I want people to know about narcolepsy so that they can be diagnosed and get treatment if they need it. But if society accepted us being sleepy, if it made the world a welcoming place where we were all free to take care of our own needs without judgment or consequences, would they need a diagnosis?
If there were no pressure from society to be perfectly capable at prescribed hours on the specific days of the week, then I could fit in and function. All I need is a chance to rest and I can be ready to go again in anywhere from half an hour to a day. Taking medication to cover up the fact that I’m human and I’m flawed sucks.
I’m also aware that there are thousands of illnesses. When I advocate for everyone to be aware of my illness, I have to be willing to learn about what everyone else has, too. There is so much information that I want people to understand about narcolepsy, but if they tell me they have XYZ then am I expected to know the same about XYZ?
It feels like an impossible task so I had this radical idea that we should all just treat each other like humans. Here is what that might look like.
- Accept everyone as they are right now. Nobody is perfect, we all are learning and growing every day. But no one needs to be cured, or developed, or enlightened to be good enough. We are all enough exactly where we are right now. So after you accept yourself, work on accepting those around you.
- Think before you speak. If you hear your mind passing judgment on someone, think about where that is coming from. What belief do you hold that created that judgment and is speaking it out loud useful?
- Practice active listening. This allows you to see when someone you are talking to is becoming uncomfortable, it removes judgment and creates a safe space for anyone to talk about, well anything. Whether that is their horrible nightmares or the complexity of changing a colostomy bag in a public restroom. It doesn’t matter if you are educated about the topic because your openness and receptiveness allow them to share what they want you to know.
- Seek connection instead of correction. It's hard to sit with discomfort, we all are comfort-seeking creatures. We want to feel better and we want others to feel better whether we care about them or not. So stop saying that you are suggesting someone fix their diet and exercise because you care. Focus on connecting with them instead of fixing them.
- Assume you do not have all the answers. Ask questions instead of jumping to conclusions. Try open-ended questions that allow the speaker to take it wherever they feel like going.
- Use comparisons only when they add a positive spin on your life. The “I’m sleepier than you” debate is getting old. We all have challenges in our lives, they just look different for each of us and we handle them differently. Let’s not compare how different people cope. If it helps you to compare things try positive comparisons like, today I know more than I did yesterday, I’m more kind than I was before, I’m more open every day to love and new experiences.
If everyone acted this way toward others, I can only imagine what the world would look like. It’s a huge cultural shift, I understand. But I would love to see the effects.
Until we get there, each and every group of marginalized people will continue advocating for their cause. These are not just for illnesses, many of them are looking for social acceptance for one of their identities.
Thousands of small organizations will raise their voices to be heard against the heavy storm of judgments, insults, and jokes about aspects of their lives that are serious for them. All of those resources could be put to use changing something else if we all just adopted these principles.
What would be possible if we didn’t need advocacy?