How it Looks is Not How it Feels

To casually look at me, you would see no disability.  You would have no idea that 7 months ago I couldn't walk.  If I'm sitting, standing, leaning, lying down ... I look totally normal.  My issues are neurological not muscular, so I still look like the (generally) fit, forty-something woman that I was.   If it's early in the day, I can even walk normally. Unless you were a specialist, you wouldn't know that I have nerve damage.  You cannot see numbness and you cannot see pain.

If you see me go up and down stairs ... well, it's pretty obvious something is wrong. When I get tired my right leg does some pretty funky things and again it's obvious something is wrong.  But otherwise I look normal. 

So I'm starting to hear a lot of "OMG, you're doing so well !!", or "you look fabulous".

I'm never really sure how to respond to that.  The etiquette books would advise that I just say "thank you" and leave it at that.  It's not my mission to educate, enlighten or otherwise change the world, so I don't go down the road of detailed explanations either.  I realize that most people are just trying to be polite, or friendly, or are looking for something positive to say. I realize that we, as a culture, do not teach our children how to deal with other people's pain, so they don't want to "make us sad".

I grew up in a family where death was a part of every day life. We talked about death and dying, we talked about estate planning, we talked about death in other people's families, we talked about what to say to someone who was grieving.  (Well, that was my experience - my siblings may have a totally different story). 

For me (your mileage may vary), disability is the same.  It's okay to talk to me about it, it's okay to ask questions about it - "what can you feel", "what can you not feel", "what can't you do anymore", "is it weird", "do you get depressed" (but you'd better know me pretty well if you're asking what the sex is like). I would rather you understand that just because I sometimes look "normal",  I'm not.

So when you see those people who are parking in handicapped spots who don't look like they should be there, it's okay to call them on it, but do it carefully, understanding that what you see isn't necessarily, the whole story. Something simple, a casual comment ... "it must be tough to have to walk around the mall when walking is difficult".  The guilty will know they've been called out, and those with challenges won't feel assaulted.