I Do Know My Limits

Starting today there will be a notable pause in posting as I go to the Wedding Extravaganza Amongst the Beautiful People(tm) (hereinafter referred to as "Wedapalooza"). Wedapalooza stretches over 2 days, is 4 hours away from me, will require 3 wardrobe changes. Day 2 will start with a lovely array of sporting events to choose from, in the South, in June, and will end in a "cocktail dress" reception. I'm sure you can imagine how very thrilled I am to attend.

From a financial standpoint, Wedapalooza is particularly cruel to the poor in the family, as it requires hotel stays and three new outfits per person, not to mention the traveling, but that's not what I'm blogging about. What I'm blogging about is what I will endure as a chronically ill person: that special ability the able have wherein they are better qualified to discern my physical state, needs and limits than I am.

If you are disabled/chronically ill, you know exactly what I am talking about. The gluten allergic person who refuses food that will make them violently ill is accused of being rude to the cook. The pain patient who excuses themselves to lie down after a too-full day is being lazy or rude to their companions. The person with social anxiety who needs to separate from the crowd in order to stay calm is being ridiculous and needs to get over it.

I live in this body. I have for over 34 years. I am not new to this illness. I know what I need. I know what I need better than anyone else. I know my limits and I sure as hell know when I've gone past them. If I say that I need to rest, that has everything to do with me and nothing to do with you. I am not being rude, I am not being lazy, I am not being selfish. I am doing what I have to do to maintain my health.

I'm sick of being told that I am "no fun" or "ridiculous" or "jeez, it's always something with you!" Yeah? You think it's rough being related to me? Try actually being me. Try it for 5 minutes, I dare you.

Try to imagine, if you will, that you are on a car trip, as a passenger. You have to pee. You tell the driver that you need to pee, please pull over at the earliest opportunity. Imagine that the driver tells you that you are being ridiculous and rude and you need to get over it. That's what I feel like.

So, trust me, I know how I feel, I do know my limits, and you need to respect that.

A Note on Terminology

wheelchair, ablist, able, disabled, language,
lauredhel at FWD/Forward frequently addresses the issue of ablist language, specifically such phraseology as "wheelchair bound" when describing people who use wheelchairs. (If you haven't checked out FWD/Forward, you should. Expand your horizons.)

People who use wheelchairs are wheelchair users, the same way you are a computer user. I know this because you're reading this blog. You're reading this blog because you can't talk to me in person. Using the same logic as "wheelchair bound", you are computer bound, which is just silly.

I understand why able people use such language. If your legs perform the task of moving you around without difficulty, being in a wheelchair does seem restrictive. "OMG- they have to spend their entire lives in that chair?! How horrible!"

If you happen to be the one who uses the wheelchair, however, the wheelchair is the opposite of restrictive. The wheelchair is, in fact, what allows you to move about and participate in life. Without the wheelchair, you'd be stuck in whatever bed or chair your last visitor left you in. That would be restrictive.

I would ask that anyone who reads this remove such terminology as "wheelchair bound" from their vocabulary, and if you see someone else using it, call them on it.