moral model on steriods and what the heck…

The moral model….think disability in terms of The Hunchback of Norte Dame, Phantom of the Opera, some bibical stories (without the proper context!!!?!?!)…its either a curse or a special, special, inspiring gift. Both are hugely problematic. The later which is very common in many good intending avg people who want to HELP disabled people particularly cute, small kids with disabilities.

One of my favorite peds professors is on the board at a camp for kids with chronic illnesses or disabilities. He really pushed me to apply to work some family weekends this fall. And I did.  And this weekend I went. the place is amazing, financed by Nascar it has the best of everything in terms of facilities. Its by far the nicest camp I ever been invovled with.  The program is well run, creative, fun and well organized. Every last detail is scrutinized to make just right for disabled people and their families.  Its flawless.

well maybe not flawless….I noticed something odd the moment I walked into the first staff meeting. I was the only one in the entire room on wheels. I would discover later that there was one other staff member with a disability. She has been volunteering for a year…this was the first weekend they ever let her actually work on her own as full pledged counselor. …oh and she is a former camper. (bang head against wall)

The time with the campers was great. I really enjoyed pouring into the kids and watching them try new things and be kids. The only thing I noticed was a subtle sort of side effect of the flawless attention to detail.  Every need of each disabled person was taken care…to the pt that there was no reason to push oneself, no reason to clean one’s own table, no reason to really be remotely independent.  I get that they want to give the kids a vacation and to have FUN! And I want that too I just want them to realize that they can relax and have fun and be independent whole human beings. Isn’t that the point of camp? TO teach indepedence and confidence…not to be babysat on steriods right??? …someone comment and tell me if I am nuts.

The time with the staff was more awkward than med school orientation (which is saying something). Now I am going to admit I had stuff to do in my free time study, catch up on some computer stuff , talk on my cellphone (or try I had poor reception) and nap… yes nap. (in short I didn’t spend a lot of time trying to make new best friends) But my fellow disabled counselor who has been working there for over a year tried hard to hang out with the rest of the young adult staff members and got left behind and left out.  She followed me around for all the non-camper time. I liked her and I enjoyed her company but her utter isolation from the other staff made me furious.

My whole camp experience can be summed up as the following: When the disabled person is small, cute and someone who needs my attention and care they are fun and great.  These cute, cuddly creatures are SPECIAL and have SPEICAL needs..we most help them with all things so they feel SPECIAL and and by doing this we think are empowering them (what we don’t know is we are renforcing the social norms that they will never be able to do thing sfor themselves)…Now when the disabled person is grown up sized and my peer and wants to be treated as an equal they are well…maybe scary, maybe annoying, maybe they cramp my style.  They are still SPEICAL however and have SPECIAL needs and thus probaly cannot take care of other SPECIAL people. The sheer irony of the whole situation clouded the experience for me.

I think when i go back in March I am going to take a giant NOTHING FOR US WITHOUT US (disability rights movement catch phrase that applies so well to do this) in big, big sparkly red letters and in the middle of the night I am going to hang from the rafters of the dining hall….maybe I will get some of the teenage campers to help me we can stage a sit in…and demand to be treated as equals.

ok not really but I did call every disabled person in the tri state area I know and bribed them with promises of brownies, chocolate and free pediatric care one day if they apply to work on staff.   and frankly any avg people who understrand this entry…if you live in NC…e-mail me and I will send you an applicaiton.

end rant.