Created by and for people with physical disabilities.

Life With An Attendant

Apr 22, 1998

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  Emilie ([email protected])
  HelloKit ([email protected])
Lily-1: carly, before u start can i ask a question/
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phoenyxx: this one is appropriate....I'm getting ready to look for my own place (again!) and need some info to make getting an attendant work better than last time .
hanover9: hows it going
phoenyxx: brb----tea time!
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hanover9: forgot meeting
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crafty3: meetings are too late for me
rose: hi ys rosie
rose: ya
crafty3: maybe some time they will have them early for us on the east coast
gregsgg: hi kitt
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gregsgg: fresh dipped kitty
Emilie: hi corn
crafty3: well, its my bedtime all
Corn: hi
* crafty3 ~«©»~@~«©»~o~«©»~@~«©»~o~«©»~@~«©»~o~«©»~@~«©»~
* crafty3 I've got to go now....................HUGS ALL
* crafty3 ~«©»~@~«©»~o~«©»~@~«©»~o~«©»~@~«©»~o~«©»~@~«©»~
gregsgg: no its not!
* crafty3 ..............Consoles Everyone:...............
* crafty3 ***********************************************
* crafty3 Regret that ya'll must bid me adieux, thereby
* crafty3 ***** creating a void in your existance, *****
* crafty3 *************** I GAW-RON-TEE! ****************
* crafty3 But don't grieve excessively I shall return!
* crafty3 ***********************************************
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gregsgg: waaaaa!!
phoenyxx: back!
gregsgg: WB
Lily-1: the latest communique on the newslist means we have to de-subscribe from what?
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gregsgg: wb L
Laura2: hi
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HelloKit: Okay, logs are already on but I need a couple minutes to get ready...
Emilie: hello laura
Emilie: debbie :)
gregsgg: hi
Laura2: hi Emilie
fence: hiya jrt
phoenyxx: hey jrt!
gregsgg: jrt BIG kiss
Laura2: hi again jrt
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HelloKit: Lily, Anita has made her own mailing list in her address book and has added our list to it.
miss_wild: hi again
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phoenyxx: if you need a direct line to Microsoft tech support, you can reach Bill Gates by drawing a pentagram on the floor and chanting 'I summon thee' 3 times.
miss_wild: hi jrt :)
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Laura2: hi rosie...how's your computer?
Lily-1: oh, thx
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gregsgg: lol
rosie_: its still not good
Emilie: hello yel
phoenyxx: is there a problem with the list?
rosie_: so if i leave suddenly again today then you will know its crashed again
yel: hi
Laura2: ok
jrt: brb
HelloKit: Are we ready to start?
Lily-1: so does that mean we should de-subscribe to anita's list if we want?
phoenyxx: locked and loaded....
gregsgg: no mimi ? no mooooooo ?
gregsgg: greg just ducked
HelloKit: Mimi and Mooooooo are hanging out in Vegas together...
Emilie: we are carly
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fence: hiya Ket
HelloKit: It won't do any good Lily, since she is sending her messages to our list as well.
Emilie: migwigcht :)
kettt: hi seth...;)
kettt: azul em
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gregsgg: no kitt there are at my new apt. all my beer is gone
phoenyxx: Klatuu baraata nicktoo!
HelloKit: Tonight's topic is... 'Life With An Attendant'
gregsgg: slow down moooooo
Lily-1: ok, i keep getting personal letters from strange gentlemen
phoenyxx: wasn't me Lily :-)
Lily-1: i'll email you
HelloKit: How many require some amount of assistance with daily living from another person on a regular basis?
Lily-1: lol
rose: me
gregsgg: alll day kit
Lily-1: a little
Laura2: I do....have a live-in aide
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kettt: i do
gregsgg: sone to be me
HelloKit: Hi bojingles :o)
phoenyxx: not me currently but I'm supposed to qualify for an attendant when I move this summer.
Laura2: one M-F, one F-Sun
Laura2: hi ket
bojingles: heya whats up
kettt: hi Laura...nice to see you..;)
gregsgg: all mine have been not good
Laura2: you, too, dear
Laura2: brb
HelloKit: What options are there for attendant care aside from hiring someone (i.e. family, roommates, etc.)?
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gregsgg: hard to find someone who is not going to ropp you
Laura2: back
HelloKit: Hi Dr. Bill :o)
Emilie: dr bill :) hi
dr_bill: Hi all
gregsgg: hi bill
gregsgg: nicee
floopy: dollar bill?
phoenyxx: or accuse you of harassment when they weren't even at your place when the alleged incident occured.
HelloKit: Dr. Bill - current question is: What options are there for attendant care aside from hiring someone (i.e. family, roommates, etc.)?
dr_bill: I had to come to this meeting. I am loosing my attendent of five years.
gregsgg: to seee you again
Laura2: I don't know....I've done both live-ins and live-outs, always hired
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Laura2: oh, sorry, dr. bill
rose: my full time attendant is my boyfriend and when he wans time off i have a friend come in
dr_bill: The problem I have with attendents is you are with them more than a spouce. Personallity conflicts are very common.
gregsgg: yep that is allways a chancge you take
dr_bill: The other problem is I have had to train my attendent myself.
HelloKit: ack! gotta change servers... brb
Laura2: the hardest thing is that you're not supposed to be personal, but when they are here 24/7, that's impossible
gregsgg: but al greeen says it will work
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gregsgg: no its not
gregsgg: just leave kitt
Laura2: nearly, anyway
phoenyxx: Laura: I worry about that- some people take simply being polite the wrong way!
Laura2: brb
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gregsgg: DR. bill can I just call you Bill is that ok?
dr_bill: It is really hard to find a compatible attendent. There is not an over abundant supply of attendents.
dr_bill: You sure may.
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dr_bill: Bill is fine.
Emilie: wb carly
HelloKit: sheesh
gregsgg: I know you worked hard for that but it is so
Laura2: my aide, Eryn, quit unexpectedly and moved next door
gregsgg: hard for me BIG hug and kiss dr. bill
HelloKit: What attendant arrangements (hired, roommate, family) have you tried and what worked best for you?
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rose: boyfriend so far
phoenyxx: first time I had my own place I did have an attendant but it took two months to actually find one, and the one 'candidate' before her only came by once and then filed a harrassment complaint against me, and I was almost facing legal trouble.
jrt: sorry back again:)
phoenyxx: don't want that to happen again but I can't simply get my own place again and do without any help.
Laura2: Now she's crying that that it's a bad situation next door and wants to move in, but I can't let her
dr_bill: I have had both live in and hourly attendent care. I have found that the 12 hour shifts work the best. You have a chance to keep your sanity. :-)
phoenyxx: I currently make do with no attendant- I live with my parents who have no clue about my situation.
Laura2: yeah, I guess so
gregsgg: kitt thats is hard to answerser they wont lited me hire my famliy so gust have to put up with there care wont start or they have boy prop.
gregsgg: car
HelloKit: I tried a volunteer hand-picked by school officials for a two-week trip to Seattle... NEVER AGAIN.
Laura2: brb
Laura2: I've done that...bad
jrt: well I dont really have any attendedants as such, just my father in law driving me around
dr_bill: I have traveled all over the world and found the only way to get good care was to make arrangements to stay in a hospital.
HelloKit: Right now I have my boyfriend... it's working out alright.
dr_bill: That
dr_bill: That is great Kit. I wish you the best.
gregsgg: kitt they said he beat you ealyler
gregsgg: bad news
HelloKit: I'll admit it isn't perfect, but it's better than my family was the whole time while I was growing up.
Lily-1: brb, phonecall
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dr_bill: Speaking of attendents. My night attendent just showed up and has dinner ready. Will see you all later.
gregsgg: hi bay
HelloKit: Greg... huh??? not mine
jrt: by dr bill:)
Emilie: bye bye doc :)
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gregsgg: bye bill
phoenyxx: I'm trying to figure out ways I can get my own place and avoid getting an attendant to avoid any trouble.
gregsgg: yes kitt they said that you where beat bye him
phoenyxx: I can't afford to be sued over a misunderstanding.
bayah: hi everyone
gregsgg: hi bay
HelloKit: Who said that, Greg?
jrt: Hi bayah:)
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gregsgg: about a hour ago
gregsgg: you ok?
gregsgg: he not hit you?
* phoenyxx is confused!
* HelloKit too...
Gilbert: Oh well - gotta go and get off the phone line - for what it's worth, I don't use an attendant, and some things will be easier (or possible) come this summer when my honey and I move in together.
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gregsgg: never mined
HelloKit: Do you prefer to have a strictly professional relationship with your attendant, or do you prefer to have a more personal relationship?
gregsgg: kit can you
gregsgg: proessional
phoenyxx: ....the short time I had an attendant it was sort of a mix, professional but a good 'working relationship' if that makes sense.
phoenyxx: I hope it works out like that this time around.
Emilie: bbl :)
jrt: I am too stubborn to have an attendant
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HelloKit: hehe Debbie
phoenyxx: jrt: I'm not subborn, I just know how to stay out of trouble!
HelloKit: What are the pros and cons of keeping your relationship with your attendant purely professional?
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Kali: hihi
HelloKit: Hi Kali :o) current question is: What are the pros and cons of keeping your relationship with your attendant purely professional?
phoenyxx: from my limited experience, a 'con' would be that things would be too clinical or technical.
jrt: yeah and that too, but I'm able to do most things so I dont think about getting any help, but I know there are people that really do need attendants:)
phoenyxx: if it's personal help then I have to be comfortable with that person.
jrt: Hi Kali:)
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* HelloKit nods to phoenyxx.
HelloKit: I understand completely.
phoenyxx: jrt: I was referring to legal trouble. very hard to avoid and I've had be very careful.
Kali: well....to ease letting them go
jrt: yeah understand pheonyxx:)
phoenyxx: Carly: that's sort of what almost got me busted that time....the first helper came by for an hour and didn't like the job, but reported back to the caseworker like she had been set up or something, and
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jrt: Hi Turbo:)
phoenyxx: I was stuck having to explain that my being a little forward about '
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bayah: Id like to ask a question Has anyone thats here or do any of you know of a disabled person who has won a suit against someone for discrimination or any other issue that has involved someone who is disabled.
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jrt: wb fence:)
phoenyxx: 'personal help' was my way of putting myself at ease and I just assumed she had been told about it ahead of time but she hadn't been/
Kali: gregg
phoenyxx: .
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fencepost: thanks jrt
turbokev: hello everyone
turbokev: Is it over
Kali: /bye
HelloKit: nope
Kali: pine
jrt: wb rose:)
HelloKit: still going
rose: i got cut off
gregsgg: hi rosa
phoenyxx: ....in other words, my plan this time around is to establish a true 'working relationship' while still maintaining a proper professional 'boundry'.
Kali: bye
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phoenyxx: a helper can still be professional without being so clinical and impersonal about it.
HelloKit: What are the pros and cons of knowing your attendant on a more personal level?
jrt: that sounds like a good idea pheonyxx
phoenyxx: con for me is that if things get too friendly, it would be very awkward being that 'close' with someone who
phoenyxx: is helping with very personal things, if that makes sense.
phoenyxx: but if they were comfortable then it wouldn't be so bad.
phoenyxx: thanks jrt :-)
HelloKit: Just the opposite with me.
Laura2: back
HelloKit: I can't feel comfortable with it unless I know the person well.
Laura2: me too, carly
gregsgg: helps to have it a pro. levell this way you can have some say about what the contorls are
rose: comfortable is the key word!
turbokev: can we talk about nurse who come to care for us
phoenyxx: granted though I haven't had much experience and given enough time I can probably get over being shy about some things.
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HelloKit: sure, I would consider that an attendant, turbokev
phoenyxx: it just felt weird at times having a normal conversation with my helper then have to ask her to help me 'change'.
rose: i use to live in a group home so i am not shy any more
HelloKit: Should there be ground rules set and made clear at the beginning of an attendant-client relationship? Should the rules be different depending on whether there is also a personal relationship?
gregsgg: yes
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phoenyxx: definitely Carly! best way to avoid misunderstandings later!
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jrt: Hi SQ:)
gregsgg: helps to have that predeterming
SnowQueen: hi all :)
Laura2: pros are that you gain awareness of them, cons are that sometimes you lose objectivity
phoenyxx: rose: I've been in the chair 5 years and I still get shy about a few things.
phoenyxx: true Laura!
Laura2: Kris:)
SnowQueen: Hi Laura *huglz*
gregsgg: brb
turbokev: Here in Louisville the Attendant program has a waiting list that I've been on since '89 and I'm 4th on the list today
Laura2: I still don't know the answer
gregsgg: bbl sorry dinner
jrt: wow turbo
HelloKit: What are some rules that should be set?
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SnowQueen: have you found a new attendent Laura ?
turbokev: There should be ground rules
jrt: yes I agree
phoenyxx: basic rule for me is to tell me right off if there's a problem with any of the arrangement.
turbokev: No romance
phoenyxx: I mean for them not to worry about telling me, I need to hear it if they are sincerely uncomfortable with some aspect of it.
Laura2: To be honest, I cried when Eryn left even though I needed a more mature aide, and cried when Jenny came because we aren't connected
phoenyxx: that too kev :-)
Laura2: so?
jrt: what do you want from an aid laura??
Laura2: not for weekends, SnowQueen
SnowQueen: k
phoenyxx: Laura: on that subject, should I worry about me being 'nice' getting misinterpreted as an ulterior motive? I'm more comfortable with women helping anyway but don't want to get myself into
phoenyxx: trouble over something really stupid.
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jrt: looks like you want a friend and aid, not that there is anything wrong with that
phoenyxx: jrt- exactly- I can be friendly and still respect any 'boundries' on a professional level.
HelloKit: Do you guys think an attendant should be able to make you work around their schedule? As in, you do something when they're ready to do it, whether you yourself are ready or not?
jrt: thats how I would want and aid, to be a friend as well
turbokev: I receive nursing service on medicaid waver but it probably won't last
Laura2: It doesn;t exist, but I want to be more than a job
jrt: thats a hard on Craly??
jrt: carly,sorry
phoenyxx: depends on the situation Carly....I get picky about some routines but on the other hand it wouldn't hurt to have dinner a little earlier than I'm used to---basically depending on what it is I can be flexible.
jrt: one
turbokev: no they should work around our schedule reasonably
jrt: true turbo, but it depends on the situation I think
turbokev: nurses from agencies have to
Laura2: I worked around Eryn's schedule,,,,she was young, but I found myself more and more jumping to her mood,etc
jrt: yeah that could happen
HelloKit: Well, here's where that question is coming from... this girl that went to Seattle with me would sit in the lounge and watch TV in the evenings while I was writing letters, etc.
phoenyxx: geez...
Laura2: wasn't good in that, but as a friend she was great
Laura2: so I think it also depends on where they are in life
turbokev: come on your schedule
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phoenyxx: In my case, some things I need help with vary from day to day, so a helper has to be ok with coming by one day and not needing to do much but possibly having to do more the next day.
turbokev: I've heard some horror stories about attendants
jrt: thats fair enough phoenyxx
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jrt: wb rose:)
SnowQueen: wb rose :)
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rose: thanks guys i keep getting cut off
turbokev: wheres moo
Laura2: a 50-year-old is going to have less of a desire for freedom than a 19 yo
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phoenyxx: jrt- :-)
Laura2: what happened on the Seattle trip, Carly?
jrt: on a holiday turbo:)
turbokev: Laura2 I don't think so
SnowQueen: cant you sit down with your attendent and set ground rules?
turbokev: yes
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phoenyxx: SnowQueen- that's sort of what I was saying, letting an attendant know about individual needs and sometimes little quirks :-)
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joel-: hello, all.
jrt: Hi Joel:)
SnowQueen: Hi joel-
fence: hiya joel
Laura2: ok, depending on your definition, turbo, but mature aides are usually less apt to scream 'Tou are being unfair'
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joel-: Hi, Debbie, how are you?
rose: hi joel
jrt: great and you??
joel-: Hiya. Just fine here.
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jrt: Hi Scott:)
Laura2: brb
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MrLinux: hey
MrLinux: is there a heeting?
MrLinux: meeting
phoenyxx: what I want to avoid also is someone helping then getting mad about it later...some people do that, and act like they got conned or something.
SnowQueen: put it in writing ..
phoenyxx: that's why I was saying that you should get some things established first.
Laura2: yeah, I can relate
phoenyxx: exactly SnowQueen :-)
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Kali: rhi
jrt: wb kali:)
Kali: re
Laura2: but sometimes even establishing doesn't prevent resentment
Kali: ??
jrt: no it doesnt laura, unfortunately
Laura2: establishing rules for aides, joe
phoenyxx: Laura: that's something I hope I can keep from happening.
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HelloKit: argh!
jrt: wb Carly:)
HelloKit: sheesh... where was I?
Laura2: they could be fine about a situation one month and then the next month it bothers them
Laura2: we're still talkingg about rules, carly
phoenyxx: sounds like the health center staff at the local community college here Laura!
Laura2: lol
phoenyxx: no joke- the whole center seems to operate for a few disabled students and that's it.
HelloKit: If you guys got any of what I was saying before, do you think I was right in being upset about it?
Laura2: It's fresh in my mind because I've lost 2 aides in 3 weeks
phoenyxx: yes Carly.
Laura2: what was it, I'm sorry...I was gone for awhile
Laura2: true, Phoenyxx
HelloKit: Laura: about an aide I took to Seattle with me... she would make me wait until she was done watching TV before she would put me to bed.
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Laura2: I've had that experience
rose: hi Ray
Laura2: hi Ray
jrt: Hi Ray:)
Ray-1: Hi, everyone.
HelloKit: Okay, so next question...
HelloKit: Does anyone have any good or bad attendant experiences you'd like to share?
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Laura2: YES
phoenyxx: there was the incident I already mentioned earlier.
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Laura2: it ruins relationships
Laura2: at least in my case
Ray-1: What happened, Laura?
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Ray-1: How so?
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SnowQueen: poor rose..
Laura2: what happens when you disagree on how to manage the aide? with us, It became a 'Well, the reason you need her so much is because you let your disability run your life'
KittyEek: SOMEONE does not like me...
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Laura2: so said my best friend
phoenyxx: it's a conspiracy Carly... :-)
SnowQueen: are you being nuked Kitty?
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phoenyxx: sorry to hear that Laura..
phoenyxx: hey, time for me to go, so I'll see you all later! :-)
Laura2: We love you, carly
phoenyxx: bye everyone!
phoenyxx: :-)
Laura2: ok take care
jrt: bye phoenyxx:)
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SnowQueen: bye phoenyxx :)
rose: bye phoenyxx
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rose: got to run so night all:o)
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Ray-1: Gotta go, I'm beat. Take care all.
SnowQueen: nite rose :)
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SnowQueen: take care :)
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Laura2: and nowwb
* HelloKit screams!!!!!
Laura2: wb
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Laura2: hi Chan
HelloKit: Okay, let's get this over with before I get zapped again... :o)
HelloKit: What advice would you give to someone looking into getting an attendant?
BuddhaCat: make sure the attendant is VERY open-minded
Laura2: be clear in the beginning, and consistent with routines
Laura2: find someone flexible
BuddhaCat: and makes them bend over backwards for you! ;)
Laura2: outline everything so there's no cause for resentment
Laura2: have a strong sense of self, remember that you are not just someone with a disability
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BuddhaCat: wb Kit
* HelloKit sighs.
HelloKit: I give up.
Laura2: try not to start thinking of your body as something which needs help
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jrt: poor Carly:(
HelloKit: Three ISPs and not one will hold a connection for more than 5 minutes.