Showing posts with label OI syndromes. Show all posts

I remember there were times when to get a point across, my parents told people that they had a severely handicapped child:
"My wife doesn't work because she needs to take care of our severely disabled daughter.." 
"Our family appreciates any financial assistance you may be able to provide. We have a wheelchair-bound, severely disabled child and much of our family's attention & finances go to her care.." 

But then there were times when I was suddenly capable of everything in the world:
"It's important that Sandy participates in everything her classmates do in school. There is nothing wrong with her mind, when she doesn't have a broken bone nothing is wrong."
"There isn't anything wrong with her - she just can't walk." 

Needless to say hearing how my parents described or explained O.I. to others was very confusing for me. Sometimes they made me out to be extremely severe out of nervous protection for me, and other times I might as well have been any other kid who was encouraged to do everything I wanted. Personally, I never considered myself to be severely disabled. I could probably count on one hand the things that I wish I could do but I can't (future blog post!) - for everything else though I have figured out an alternative. This has led me to believe that the interpretation of 'mild' 'moderate' or 'severe' varies between the individual affected, and those who are their caretakers. For instance, when I was in a spica cast I didn't consider myself to be severely disabled. Though I needed help with virtually everything - I was still able to live my life. There was always a way to do what I needed to do and what I wanted to do, and therefore in my mind I didn't consider myself to be severely disabled. However I'm sure that for my parents my time in a spica cast was one of my more 'severe' O.I. phases. Simply put, they had to do more for me than when I was in a long leg cast, or even in no cast at all.

I get slightly uncomfortable when people compare severity of O.I. or any other disability. How do people determine severity? Is it by the amount of pain? Limitations? Capabilities? Bone deformities? Number of fractures? Surgeries? Prognosis? The categories are limitless and there are no clinical benchmarks that I know of or empirical standards to measure severe-ness by (excuse the social science in me...) Granted some cases are pretty obvious - I know of O.I.'ers who are able to walk without any assistance, while others have difficulty sitting in an upright position (and they even all identify as the same O.I. type!)

All of that aside -- and back to the original point of this entry -- observing how my family defined my disability shaped my own idea of it. I grew up understanding that my O.I. can give me more trouble than other times. There are times when I need to be paying more attention to 'it' than others, and other times when it's just a thing that allows me to cruise around town and be at ass-level with everyone else. Since I ultimately didn't agree with my parents' idea of severe or mild, when I got old enough, I didn't take their definition of my disability as my own. At some point I realized that they are not the ones who live with it, they're not the ones who wake-up every morning and decide whether or not today will be a high or low activity day, and are not the ones to decide when to take the pain medication after a fracture. Sure they may have taught me how to make these decisions on my own, but I've decided that it makes my life easier and less barrier driven when I don't have to consider whether or not I'm 'mild' 'moderate' or 'severe'; also, the barriers are less of an affront when I am not carrying others' definitions of my disability on my shoulders.

"Sandy, I was reading on-line that there are different types of O.I. So what type are you?" My friend from college asked. 
"Oh I don't know. I'm clinically type III but sometimes I think that I'm just my own type after all."

In my first Top 5 Pet Peeves post I wrote about the top 5 annoying things people do to me because I use a wheelchair. For this top 5 Pet Peeves post I decided to list the top 5 most annoying things people do without realizing I am hard-of-hearing.

1. Talking to me during a movie we are watching in theaters
I don't always wear my hearing-aids so I can't totally blame people for this, but when I am not wearing them (which is 85% of the time) - I am relying on lip reading. If you are going to talk to me in a dark place when I am actually listening to the sounds that are blasting at me from the big screen, just know that I am going to nod my head and say "sure."

2. Mumbling
Just don't do that if you are talking to me, please. It sounds like someone gargling over static airwaves on the radio. It also sounds the same to me if you're going to put your hand in front of your mouth when you talk.

3. For best results, face me
People who have their faces turned away from me, or at an odd angle don't always get the response they are looking for from me - if any response at all. My lip-reading works in part due to context clues. So many words sound the same on your lips i.e. "mat" "bat" that without being able to see or hear the other words... well, there can be some pretty awkward consequences! "What? You want me to put the bat back on the floor? What bat? Where?" 

4. Do not scream at me dumbly
You are the only one who will look dumb. And also because I am also in a wheelchair there are many strangers who will kneel down and yell in my face. In case they hadn't noticed I am unable to jump into the air and do that mid-air split no matter how much they yell into my face, I just won't. My EARS are broken not my BRAIN. But just because you see a hearing-aid in a person's ear doesn't mean you treat them like they have no ears at all - they DO have a very expensive piece of technology in their ear that is meant to amplify sound after all.

5. You're not at a spelling bee so spell at a reasonable pace please
No one is about to rush you off the stage for taking an inordinate amount of time spelling a word. So if I ask you to spell a word like "opthalmology" - do not rush through the letters like you're sprinting to that last "y." Honestly, if you rush it I'll only make you repeat it again anyway. (Remember, I am the one with the power wheelchair..)