My experience with Social Media and SB Part 2

Again, I will preface this with a warning! This possibly and could upset some people. I am sorry but I am brutally honest!!!

I have a problem with the new phrase “Politically Correct” or for short PC. I understand that some words should not be said, especially in certain environments. However, no matter how PC you try to be, someone will ALWAYS be offended. What I cannot comprehend, is why we have to walk on eggshells all the time???

So relating this to SB and the groups I am in, there have been some huge debates and blowups from people of this politically correct verbiage. People have become upset in these groups about the term wheelchair bound. They become offended when others say they “do not have to use a wheelchair” or “no, I do not use a wheelchair”. They claim those statements are belittling people in wheelchairs and that it puts some kind of negative connotation on them because they do have to use a wheelchair. They also say that a wheelchair is an acceptable mode of transportation.

I guess what I don’t understand is when someone states “I do not have to use a wheelchair”, especially when in a group of SB people, it is not meant negatively against anyone who happens to be in a wheelchair, it is just a fact statement. It does not mean that you are putting yourself above someone in a wheelchair. This statement is just a response to do you use a wheelchair as a form of mobility.

My issue is that when you have SB, especially when dealing with the medical community, the question of using a wheelchair for mobility is almost always asked. Also, if they see that you are ambulatory they (those in the medical community) are usually surprised that you do not use a wheelchair or at the very least some type of crutches, arm brace crutches, or braces on your legs.

Understand that every one with SB is different because everyone’s lesions are on different levels of the spine. Even then, depending on the lesion and the severity your functions (what you can and cannot do) are completely different. Hence SB is called the Snowflake birth defect. This does not mean those that are ambulatory are any better off than those who may have to use some type of aid to help them get around. So why get so upset when someone states a fact.

From my personal experience with SB and dealing with the Spina Bifida Association and others whom I have conversed with over Facebook, not to mention the medical community, I get questioned about my SB more often because I am ambulatory. I have been told by quite a few people (with SB and parent’s of those with SB) that I don’t understand what it is like to have Spina Bifida, when actually it is quite harder for me!!!

Just because I can walk people assume that there is nothing wrong with me, unless they notice my slight limp. Even then they do not relate it with having a severe birth defect. For so many years, I hid my secret of having Spina Bifida from a lot of people in my life for fear of what they will say and how they will judge me. When everyone thinks you are “normal” (whatever that is) because of what they see from the outside, they already have judged you with preconceptions. It’s hard when you park in a handicapped parking place and people start yelling at you saying you are using your parent’s placard or other nasty things. How do you handle that? It makes me even more self conscious of myself and really wonder if sharing my story is really worth all of this mess!!

So my point, why do I have to be PC when talking to others who have SB?? Yeah we all are different when it comes to our abilities, but why get so upset about it????