Mild? Moderate? Severe?

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."

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