When I lost all feeling below the knee, the people that I had met that were around my age with paralysis gave me a run down of the way things would be. The endless search for something that might bring even a little feeling back, the way people will look at you, the little and big adjustments you'll make in your daily routines, and the questions people will ask you.
I'm not a sensitive person at ALL. I never have been. I have some pretty thick skin, and it's only gotten thicker since my wreck because, well, it's basically required if you want to survive.
There's nothing I hate more than ignorance. Goodness gracious, it kills me. SO. I'm going to help you out here.
5 Things We Should All Agree to Stop Asking/Saying to People with Paralysis:
5. So are you just going to live off disability like everyone else?
**Try: "Has this affected your career plans?"
First of all, that program is in place for a reason, and until you're in a situation where you aren't sure you'll ever be able to work, you shouldn't bash it. However, not having a teaching career was never an option for me. It started out as denial after my legs went dead, but then it just turned into determination. Contrary to popular belief, the majority of us who qualify for disability don't ever want to be in a position where we HAVE to be on it because we can't work.
4. You are so lucky you get to park in handicap parking!
**Try: There is no alternative. You sound stupid.
Yes! I am SO LUCKY that I'm paralyzed from the knee down at 22 years old and am not capable of walking from the back of the parking lot with heavy bags like a normal person my age. It's not a privilege. Now that I have my leg braces, I don't even use my handicap tag unless there isn't a spot anywhere near the building or if I'm alone and will have a lot to carry to my car. I can promise you that all of us young people who need a handicap tag would gladly give it up if we could have our healthy, working legs back.
3. I would just want to DIE if my life was ruined like that.
**Try: "I bet it's been a really hard and sucky adjustment, I'm really sorry."
Well you see, for the first several months, I did. It's a pretty common thing with people who have TBIs and/or SCIs, or any other really traumatic injury, really. Luckily, with a little research and support from the other young people at rehab, I realized that 1) my life isn't ruined and 2) I am too stubborn to let some red light running idiot decide how my life is going to be. Bottom line: Please stop saying this. We have already thought everything that is running through your mind. Don't convince someone that the voice in their head telling them that things won't ever get better is true. It's not.
2. How are you going to have babies if your legs don't work?
**If you must be nosy, try: "Will your injuries affect any plans to have a family?"
This is a fun one. First of all, my legs work, just not in the same way that everyone else's do. Second, you have no idea whether or not someone has real fertility issues that have nothing to do with their injury. Third, all of the people who ask me this are (obviously) adults. I assume that if you're an adult, you're aware that the area from your knee to your foot doesn't play a vital part in the baby having process. It just means that when I do have kids and I step on a lego barefoot, I won't feel it. So who's the real winner here?
1. Do you think a man will ever want to marry you with all of that?
**There is no alternative. You sound rude, ignorant, and shallow.
I'M SORRY, WHAT? I have not just been asked this once, but MULTIPLE times. As in way more than 10. People. This is not okay. First of all, we all know how I feel about the South thinking women need to be married with babies at 20 to survive in life. And if you want to know the truth, having to be re-taught how to walk as an adult kills your confidence, so of course that crossed my mind. But only once, maybe twice, and that was right after I realized this wasn't going away and way before I knew so much about this kind of life. So yes, I do think so, because I'd like to think there are people out there who aren't as shallow as you crazies asking this question. And truthfully (as my family so lovingly pointed out), between my never-ending stories about my students, my education rants, and my giant, slightly over zealous yet extremely loving extended family.. my paralysis is going to be the least of that very, very patient man's worries.
According to my 2nd graders last semester, my singleness had nothing to do with my leg braces and everything to do with the fact that my hair gets frizzy "even when it's not raining, Ms. Cacibauda!!" (BYE Southern humidity, you won't be missed)
So there you are. It's all out on the table for you. Let's all agree that these are absurd things to say to a person and we should all just stop, yeah?
I love when people come up and ask me questions rather than staring at me because duh. I love to share information with people who also have partial paralysis and tell everyone about Methodist Rehab and all of that good stuff. I love to hear stories about people and their loved ones who have used or tried the Bioness braces. And I know the majority of people really do mean well. But come on. Use your brain.
If you aren't sure how to treat people with paralysis, or any other disability for that matter, here are a few guidelines to help:
1. Approach said person and talk to them like you would any other person. (Crazy, I know)
2. Say "How are you today?" or "It's a pretty day, isn't it?" (No, because it's almost July and we are in the South.)
3. Smile and say, "Have a nice day."
END SCENE. You're welcome.