Sometimes the institution-trapped mindset of the disability services industry throws human subjects into similar throes of nobodiness. I was dealing with a broken wheelchair, my beautiful customized Quantum R-4000, earlier this week. I called to get it repaired, and requested a standard chair like those in the commercials on TV, just so I could, you know, sit at the dinner table, shower, and go to work and stuff.I was rotundly denied, informed that I was simply too disabled to sit in a regular power chair, even though my insurance would cover it. I should plan instead to live out a few weeks wrapped up in blankets in bed or on the floor. No dinner table, no bath, no job.
This was even after a phone call from my doctor. Trapped by my computer for two days, I persisted with Skype calls. Finally, they requested a letter from my doctor. Got it. Not enough. They wanted a letter from my "caregiver". No mind that my caregiver is hired, trained and fired by me and has no relation or real relationship with me. No mind that I am, in fact, my only legal guardian. They insisted that there must be somebody in charge of me. No, I explained, only me, and you are about to ruin my life and risk my death. Here's a signed letter saying just how you are destroying me... Signed, the Professor. OK, finally, I was human enough to have my own words effect change. I am no one's object.
As a caregiver to my husband ... went through something almost as crazy... first denying he could have a power chair (brain injury & seizure disorder)... then when we were to get the controls in the back... they claimed I was not sick ... (no bad back, etc. thank God)... so therefore I could continue to push him around!
ReplyDeleteAppreciate this blog... and the incredible art - our passion... http://artsanddisability.blogspot.com/ you may want to check us out as we are new and attempting to chronicle years of work & future work.
God bless,
Sonshine & Merry Lynn Morris