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鈥檚, disability program volunteers and 鈥榦ther interested parties.鈥 They will touch you, assist you and generally assume that they own your medical history, including those parts my grandmother referred to as 鈥淭hings women just 诲辞苍鈥檛 talk about.鈥
Tell that to the respite facility director who bellowed across the common room at me, 鈥淎re you incontinent!?鈥 During my respite stay, a sheet with my medical conditions was posted on the communal board. I had male caregivers who couldn鈥檛 understand why I wanted to remove my own panties/knickers while on the toilet.
鈥淚t鈥檚 no big deal!鈥 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 鈥渁 duty鈥, 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 诲辞苍鈥檛 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 鈥渃lient鈥, I wasn鈥檛 a human, I was a 鈥渄isabled鈥 and they had the RIGHT to my information and my person. When a home care worker is in a hurry, I鈥檓 not asked, 鈥淚s now a good time to pull off your top and bra and change them?鈥 They just start.
So I started asking questions back. 鈥淲hat have you done to integrate into the community?鈥 a rec therapist asked me.
鈥淲hat have you done to improve your life this week?鈥 I asked back. There was a shocked look and silence followed by, 鈥淭hat鈥檚 confidential information.鈥 Oh yes. That old 鈥渃onfidential information鈥 (aka 鈥淲ho the heck are you to treat me as I treat you?鈥).
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 鈥渧olunteer companion鈥 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 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?
PMS
Bladder Infection (UTI)
Anorexia
Bulemia
Frostbite
Bedwetting
Heartburn
Muscle Cramps
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 诲辞苍鈥檛 they remember me in the morning? I regularly have caregivers showing up at my apartment when they are scheduled two blocks away for the 鈥榦ther鈥 Elizabeth, the senior in her 80鈥檚. Hey, I have a better body; I get my legs waxed; I wear corsets and PVC bikinis! And my caregivers can鈥檛 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. 鈥淲hich kind?鈥 I asked.
She looked baffled; 鈥淣o, no Cerebral Palsy,鈥 she said correcting me, 鈥淭hey are all brain damaged.鈥
I tried to help her understand that people with CP were not 鈥渂rain damaged鈥 in the way she meant. No, no, she continued, all people with CP were vegetative. 鈥淧eople with Cerebral Palsy are brain damaged; they can鈥檛 speak or anything!鈥 She finished.
I showed her Laurence Clark鈥檚 大象传媒 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, 鈥淚 can鈥檛 talk about my other clients...it...it鈥檚 confidential!鈥
Ahhhhh! Telling people that those with Cerebral Palsy are unspeaking, vegetative, brain-damaged individuals is okay because, what, they aren鈥檛 like you? But confronted by Laurence Clark, there is a burning need for confidentiality? What鈥檚 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 鈥渇or confidentiality鈥 I am not allowed to even learn her last name.
Now from what I remember of playing 鈥渄octor鈥 as a child, there was a mutual peeking at privates, not just an obligation on the girl (or disabled girl鈥檚) part to drop her undies on command.
I mean, if you are helping me to the bathroom, shouldn鈥檛 I have a record of your STD鈥檚? Or a male care worker鈥檚 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鈥檛 I know if they are feeling a bit suicidal, a bit hyper, a bit addicted?
Or here鈥檚 a better idea; start treating my information, my body and my privacy with the respect and dignity you want yourself.
If that 诲辞别蝉苍鈥檛 work there will be a sheet at the door for caregivers to fill in before entering: 鈥淗ave you had the following conditions, please explain instances and in detail: PMS, UTI鈥檚, eating disorders, bedwetting鈥..鈥
鈥 Visit