They are out there, lurking around every corner and just waiting to disrupt your day. “They” are those awkward questions that everyone who has a physical disability has certainly experienced at one time or another. If you are like me and are out and about frequently, then you probably hear them on a daily basis. The bottom line is that they are out there and they are not going away; so it’s best we take these experiences as an opportunity to teach or have a good laugh. Unfortunately, too many of us allow these questions to really get under our skin and take us out of the moment. Preparedness is the key!
Question #1…How do you go to the bathroom? Wow, is this an invasive and personal question or what? Now, you have every right to respond by saying it is none of his/her business, but this could also be a teaching moment. First thing to consider, where is the question coming from? If it is a little kid, have fun with it. Don’t get angry with this curious little tike; he/she is just fearless and clueless in many ways. I usually like to tell them that I use the bigger stalls in the public bathrooms and that everything I do is with my hands or my arms. Whether it is transferring on and off a toilet or anything else, that is how I do my business. Getting into the whole catheterization process or leg bag thing is just not something a kid can understand. If an adult is inquiring, that may be a different story. If you really feel comfortable with the person, then share with them as much as you want. It really is a personal question but also a very logical one considering that we all say we are either paralyzed from our neck, chest, or waist down. People begin to think about those organs that are in that vicinity and arrive at our plumbing. For me, I have no problem talking about it, considering that the inability to pee and poop is more bothersome to me than not being able to walk.
Question #2…What will happen if you just try to move your legs? Yeah, this one gets the blood boiling just a tad, but you have to remind yourself the person asking the question has no concept of paralysis. The safest and best thing you can do with any of these questions is just to turn the tables around and ask yourself how dumb the question would really be if you were the one who was NOT paralyzed. Let me correct myself, there is no such thing as a dumb question, just dumb answers, so try not to give any! So back to the question or better yet, your response. There is an exercise that some creative folks at The Miami Project to Cure Paralysis came up with years ago that I still share with people. You have the person asking the question take one of his/her hands, make a first, extend just the ring finger (the one next to your pinky), place the fist with the one finger extended onto a flat surface facing down, and ask the person to try to lift that extended finger off the flat surface. For many people it is impossible. You will hear some noises coming out of them that will more than likely be grunting because they believe it is all about willpower. On one small level, this person will realize what it is like to feel paralyzed for that moment and just one small part of their body. There may be some that can move the finger but it is not easy. Along with sharing this exercise, you can also tell them that the connection in your spinal cord that allows you to move your legs and/or arms has been damaged, almost as if a bridge was damaged that prevented cars from passing over it. The same holds true with your damaged spinal cord, in the sense that messages can no longer pass through that portion of your spinal cord or bridge.
Question #3…How do you do it? I know many of you are thinking that this is a sex question. Not today. That is a question I will get into with my next blog, but for this question the person means, how do you manage your disability, move on with your life, stay so positive, etc. This usually gets me a little choked up because it is not easy for any of us. I then respond by telling them that we all have inner strength and that it is always available. It just happens to be turned on for most people when we experience tremendous adversity. They usually respond by telling me that they, could never handle such a situation and if you really think about, you would probably say the same thing if the tables were turned, because we don’t believe we have some power to persevere. Well, we do, and everyone does, but that does not mean everyone taps into that inner strength. Some people choose not to and that is unfortunate, but again, it is a choice.
Tune in next time, for Part II of these AWKWARD questions and please let me know some questions you have been asked since you have been paralyzed.
Enjoy the journey,