All intimacy, no dignity.
I get more intimate contact, clothing removal and finger fumbling weekly than my entire teenage near-sex encounters combined. But will they remember my name in the morning? Probably not.
The reality of being judged a dependant disabled individual is that, by necessity, you will have a steady stream of home care workers, hospital staff, respite workers, social workers, case workers, GP’s, disability program volunteers and ‘other interested parties.’ They will touch you, assist you and generally assume that they own your medical history, including those parts my grandmother referred to as “Things women just don’t talk about.”
Tell that to the respite facility director who bellowed across the common room at me, “Are you incontinent!?” During my respite stay, a sheet with my medical conditions was posted on the communal board. I had male caregivers who couldn’t understand why I wanted to remove my own panties/knickers while on the toilet.
“It’s no big deal!” they told me, and I could see, like those assuming I will give full medical details on demand, that a guy exposing my vaginal area against my will was just “a duty”, no big deal TO THEM. After argument he consented to retreat to where he could only HEAR me pee, instead of watching me.
That moment I vowed that if I get too incapacitated to drop my panties/knickers I am either going commando or ordering a stack of tear-away burlesque style stripper panties. Want to lower my panties? I don’t think so......RIPPPP!
My respite home shared facilities with a hospital and the health organization in charge of my care. The day I rolled across the front common lobby and a person unattached to the respite knew my name, my interests and why I was there, I realized that these 'interested parties' had ceased seeing my information as confidential and thus stopped seeing me as equal in respect to themselves.
I was the “client”, I wasn’t a human, I was a “disabled” and they had the RIGHT to my information and my person. When a home care worker is in a hurry, I’m not asked, “Is now a good time to pull off your top and bra and change them?” They just start.
So I started asking questions back. “What have you done to integrate into the community?” a rec therapist asked me.
“What have you done to improve your life this week?” I asked back. There was a shocked look and silence followed by, “That’s confidential information.” Oh yes. That old “confidential information” (aka “Who the heck are you to treat me as I treat you?”).
I participated in disabled sailing this summer, which, of course, required a multi-page medical condition and medication list. I understand they need the information for my safety, but the program was run by a 19 year old and my “volunteer companion” was sixteen. What protection do I have to keep him from spreading my medical history around? Threaten to call his parents?
I wanted to go on a disability recreation program in Victoria called Power To Be but I refused to answer the medical questionnaire. Those answers are things you get to know about me only after we have had a LOT of sex. Below are a few of the 59 medical questions requiring detailed explanation of ALL past and present occurrences. Then there were seven additional question sections:
Have you ever had any of these conditions?
Bladder Infection (UTI)
Do you drink coffee/tea? If yes, how much?
Have you been in counseling with a psychologist, psychiatrist or psychotherapist within the last year?
Reason for treatment?
I only wanted to do assisted kayaking. Are those questions most people have to answer in order to go kayaking? Would you feel comfortable having a teen volunteer knowing that you are in counseling for rape and used to be anorexic just to play assistive golf?
And why don’t they remember me in the morning? I regularly have caregivers showing up at my apartment when they are scheduled two blocks away for the ‘other’ Elizabeth, the senior in her 80’s. Hey, I have a better body; I get my legs waxed; I wear corsets and PVC bikinis! And my caregivers can’t remember the difference?
For many of the younger workers, they cannot conceive that they could ever be or become us; disabled. Last week a twenty-something caregiver told me she works with people with Cerebral Palsy. “Which kind?” I asked.
She looked baffled; “No, no Cerebral Palsy,” she said correcting me, “They are all brain damaged.”
I tried to help her understand that people with CP were not “brain damaged” in the way she meant. No, no, she continued, all people with CP were vegetative. “People with Cerebral Palsy are brain damaged; they can’t speak or anything!” She finished.
I showed her Laurence Clark’s BBC piece Sweet charity; he speaks, he is ironic and clever. She got a confused and upset look on her face while I explained there were many types of CP. She suddenly blurted, “I can’t talk about my other clients...it...it’s confidential!”
Ahhhhh! Telling people that those with Cerebral Palsy are unspeaking, vegetative, brain-damaged individuals is okay because, what, they aren’t like you? But confronted by Laurence Clark, there is a burning need for confidentiality? What’s the big secret? That people with CP can talk, write blogs and have lives eerily similar to yours? This same caregiver helps me eat, drink, dress, bath and has compete access to my caregiver medical records. Yet “for confidentiality” I am not allowed to even learn her last name.
Now from what I remember of playing “doctor” as a child, there was a mutual peeking at privates, not just an obligation on the girl (or disabled girl’s) part to drop her undies on command.
I mean, if you are helping me to the bathroom, shouldn’t I have a record of your STD’s? Or a male care worker’s prevalence to premature.....sex problems. If you know my therapy history, how about I see yours? Since my care worker is PAID to make sure I keep taking my anti-depressant, shouldn’t I know if they are feeling a bit suicidal, a bit hyper, a bit addicted?
Or here’s a better idea; start treating my information, my body and my privacy with the respect and dignity you want yourself.
If that doesn’t work there will be a sheet at the door for caregivers to fill in before entering: “Have you had the following conditions, please explain instances and in detail: PMS, UTI’s, eating disorders, bedwetting…..”
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