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 don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 don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 CrampsDo 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 doesn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
Comments
"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 suspect that it's the other way around: if they saw you as equal (or, dare we say, as, *gasp* an actual human being) then they'd recognize your right to confidentiality as a given.
I haven't been in quite the same kinds of situations as you, because most of my disabilities are not mobility related (the one that is doesn't affect me much except in terms of being no longer able to run to catch up with the bus when I'm running behind schedule). But I've had people try to tell me when I do or don't need interpreters. And although most of my sign language interpreters have been reasonably professional, I've had one or two who stepped over their boundaries and tried to basically take control of my conversations instead of simply FACILITATING them like she was supposed to. Which I know doesn't begin to compare to people who just assume that it's acceptable to ask you in a semi-public place if you're incontinent, or just assume that it's automatically their job to pull your panties down even if you're still capable of doing it yourself. Wish I had something more intelligent or insightful to share.
But I know of someone else who might: Have you yet discovered the blogger Amanda Baggs at ? She writes mainly from the perspective of someone who is autistic (though she does also have some mobility-related impairments), but I suspect that a lot of her posts would resonnate very strongly with you. See her video "In My Language" (https://ballastexistenz.autistics.org/?p=287). Also her video "" (https://ballastexistenz.autistics.org/?p=223) And see her posts under the category "staff."
If you're like me, you might find her so addictive that you'll simply have to dive into her archives and read EVERYTHING. (Do read the comments threads too--some of them are at least as interesting as the original posts. And do follow her links--she's familiar with a LOT of interesting materials around the web.) But her videos will be an excellent introduction to her written work.
Don't you have any control over which carers they send you, even asking for a female carer if that's what you prefer? The British disability blogger Victoria Brignell (she's on the New Statesman website now) wrote in one column that with her carers (she is tetraplegic) she only has to tell the department which sends them and they're not there next day, end of story.
I find it shocking that a male carer thinks it OK to be intrusive with a female service user; he would not like it if someone did that to his mother, sister or daughter, if he has any. Didn't you complain to his boss? Perhaps you should emphasise that you are a woman and that you expect male carers if they absolutely must use them to respect your privacy and understand what you can do for yourself before jumping in.
As regards the list of personal questions, this is unfortunately something which is prevalent in our society generally - this risk-aversion and obsession with covering backs and making sure nothing bad can happen. For example, the bus drivers in London often will not open the doors when you need to get off even when the bus has stopped at lights or in a traffic jam, because that's just the rules - despite the fact that there is no need for the rule to be there, and it negates an adult's (or even an adolescent's) ability to take risks like that for himself. This is something that particularly annoyed me at school (which was a behavioural special needs school) - being told not to do things "for our own good", such as plugging-in or unplugging electrical appliances or opening the school bus doors, by people who actually didn't care for us. It should be resisted, as it is humiliating.
mj smith said: "the bus drivers in London often will not open the doors when you need to get off even when the bus has stopped at lights or in a traffic jam, because that's just the rules - despite the fact that there is no need for the rule to be there"
Er, yes there is, and it is the same for disabled and non-disabled people, so it is not discrimination. It is to stop people getting off the bus into the traffic. Maybe people should be free to take the risk of being run down themselves, but if the driver has opened the doors for you, then they are also liable and could be in big trouble should anything happen to you. I would hate to be in that situation myself, where I had let someone off when I wasn't supposed to and they got hit by a car. Also, getting off the bus takes time and in that time the lights may have changed and the traffic may have started moving again. At a bus stop the bus is stationary and people can get on and off safely. And one other thing to remember is maybe the traffic lights are red, but a lot of traffic in London does not obey the lights. I have seen many bicycles and cars driving through red lights not to mention if an emergency vehicle sped past. So yes it may be frustrating but there are good reasons for it.