All intimacy, no dignity.
- 29 Oct 07, 6:12 AM
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, GPâs, disability program volunteers and âother interested parties.â They will touch you, assist you and generally assume that they own your medical history, including those parts my grandmother referred to as âThings women just donât talk about.â
Tell that to the respite facility director who bellowed across the common room at me, âAre you incontinent!?â During my respite stay, a sheet with my medical conditions was posted on the communal board. I had male caregivers who couldnât understand why I wanted to remove my own panties/knickers while on the toilet.
âItâs no big deal!â 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 âa dutyâ, 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 donât 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 âclientâ, I wasnât a human, I was a âdisabledâ and they had the RIGHT to my information and my person. When a home care worker is in a hurry, Iâm not asked, âIs now a good time to pull off your top and bra and change them?â They just start.
So I started asking questions back. âWhat have you done to integrate into the community?â a rec therapist asked me.
âWhat have you done to improve your life this week?â I asked back. There was a shocked look and silence followed by, âThatâs confidential information.â Oh yes. That old âconfidential informationâ (aka âWho the heck are you to treat me as I treat you?â).
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 âvolunteer companionâ 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 ; 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, âI canât talk about my other clients...it...itâs confidential!â
Ahhhhh! Telling people that those with Cerebral Palsy are unspeaking, vegetative, brain-damaged individuals is okay because, what, they arenât like you? But confronted by Laurence Clark, there is a burning need for confidentiality? Whatâs 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 âfor confidentialityâ I am not allowed to even learn her last name.
Now from what I remember of playing âdoctorâ as a child, there was a mutual peeking at privates, not just an obligation on the girl (or disabled girlâs) part to drop her undies on command.
I mean, if you are helping me to the bathroom, shouldnât I have a record of your STDâs? Or a male care workerâs 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, shouldnât I know if they are feeling a bit suicidal, a bit hyper, a bit addicted?
Or hereâs a better idea; start treating my information, my body and my privacy with the respect and dignity you want yourself.
If that doesnât work there will be a sheet at the door for caregivers to fill in before entering: âHave you had the following conditions, please explain instances and in detail: PMS, UTIâs, eating disorders, bedwettingâŠ..â
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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.