Created by and for people with physical disabilities.

Charity -vs- Independence

Mar 18, 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:
  Mooooooo ([email protected])
  Countrybo ([email protected])
  jrt ([email protected])
  Mimi ([email protected])
  HelloKit ([email protected])
  Mooooooo via Telnet ([email protected])
HelloKit: logging is on
Mooooooo: yep
elisabeth: hello tractor, how are you
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jrt: Hi Judi:)
judi: hi everyone
elisabeth: hello judi
Mimi: hi Easy
elisabeth: hi easy
jrt: Hi easy:)
judi: Hello Easy
Countrybo: hi easy
Mooooooo: hi easy
elisabeth: does anyone know the subject for tonight
Mooooooo: look up elizabeth :o)
jrt: I do :)
judi: Charity vs independence
elisabeth: look up, otay
HelloKit: Are we ready?
Mooooooo: i am
judi: shoot
Mimi: I is
erdy: ok
jrt: i am:)
Countrybo: i is
nate: im ready
HelloKit: How many of you are involved with organizations that work to raise funds for disability research?
Countrybo: me
jrt: not directly??
judi: I am, I think, the arthritis foundation-does that count?
Mooooooo: not directly
HelloKit: Sure does Judi
Mimi: I'm not involved in anything
erdy: I belong to arthritis foundation?
Countrybo: mda all the way lol
jrt: like the Canine Control Council runs dog shows for different funraising societies...
HelloKit: What are some of the ways you've seen these organizations raise money?
jrt: I go when I can to these shows, so I dont know if that counts??
EASY: cybrromeo why u not saying anything?
Countrybo: tv, door to door, lockup, shamrock sales, carnivals....
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judi: Different type of celebrity fundraisers, walkathons, telephone campaigns, etc
phoenyxx: hello all!
jrt: door knocks, telethons, stuff like that..
Mimi: hi Simon :o)
judi: hi phoenyxx
jrt: and dog shows!!!
phoenyxx: Mimi :-)
phoenyxx: hey judi
EASY: hello phoenyxx
elisabeth: kit, are you talking local, or more national
HelloKit: doesn't matter
judi: also, the thing about leaving part of your estate to the organization
Mooooooo: ya also have to ask about how much goes to the intended purpose
jrt: yes you do Daniel
Mooooooo: I know that the American Cancer Society puts about 10%-20% at most
Mooooooo: the rest is advertising and overhead
elisabeth: i like to do things on a more personal level
Mimi: the club for the disabled where I volunteered before Alex was born made their own home-made lottery tickets and sold them, and got a local company to donate a television
jrt: me too if I can:)
judi: I was totally convinced of its authenticity until I read a news post from someone who had worked in the organization
erdy: how disgusting
judi: now, I'm confused a little
judi: I still believe in it though
EASY: so am i
judi: they also sell tapes, books, etc
Mooooooo: i only give to charities that use 100% for the intended purpose
judi: But, they also give away a lot of good info
EASY: good bye all
jrt: bye easy:)
judi: How do you find out Daniel?
judi: bye easy
Mooooooo: if the charity claims that the contribution is tax deductable then you can write to them and they MUST send you their financial reports
judi: ok
judi: it is tax deductible
HelloKit: Do any of the organizations you are involved with use a pity approach to solicit donations?
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judi: No
elisabeth: no, not at all
jrt: yes and I hate that...
Countrybo: yup and it sucks
Mooooooo: no, they use just the facts
elisabeth: what do you all think of the jerry lewis show each year
jrt: I dont see it lisa:)
judi: I just wish they would ask others or money too-which I'm sure they do, but everytime I turn around they are asking me again
Countrybo: pity approach 100% but hey look atall the$$ they get thankgod
phoenyxx: perhaps on a similar level, I heard about a local CP support group that was founded by the parent's of a woman with CP, sounded good until I found out that the group's whole existence revolves around their daughter.
elisabeth: i kind of think of that as a pity show
erdy: I watch the end
phoenyxx: I seem to have seen alot of flak aimed at the Lewis telethon in recent years.
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judi: That isn't much different than ,for instance a local child gets hurt, no insurance, a fund is set up, etc
elisabeth: judi, you are probably right, but that show bugs me
jrt: what I hate is when these people sit outside a bank or supermarket and asking for a donation as you walk in the door
phoenyxx: Perhaps, but the woman I know is very arrogant about it. She's mad that her parents let other disabled people in it after she got older.
* Countrybo is thankfull for mda
* phoenyxx is NOT knocking groups!
Mooooooo: I agree CB
Mimi: I haven't watched it in years, but I have MD people in my family so I usually give anyways...CB reminded me last year ;o)
phoenyxx: For some reason, and I know that's not the intent, when I see some group of disabled people in the press I just end up feeling very guilty about my situation not being as bad as theirs.
Countrybo: lol
elisabeth: i am sorry if i have offended you all, really
HelloKit: What are some examples of the 'pity campaign'?
judi: I have gotten a lot of good sound info from the arthritis foundation and I know if there is ever any hope for a cure that it will come through the research being done there
Countrybo: you havent liz
Mooooooo: you havent, elisabeth
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jrt: getting people in wheel chair at shopping centres asking for donations outside a bank
Countrybo: hey i get letters from mda all the time they really are gettin closer to some cures
Mooooooo: carly, i saw it with the clinton health care plan
phoenyxx: pity campaign: is it out of line to be critical of a the coverage of a disabled celebrity, in the sense that their particular condition is shown to be important only because a famous person has it.
judi: same with arthritis
Mimi: lol
Raven_: llllll
Mooooooo: every time hillary spoke she made sure to be holding some 'po lil crippled black kid'
phoenyxx: Mooooo: I think Clinton's Health Care plan is patterned after the German T-4 project.
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Mooooooo: lotaca :o)
jrt: the problem isnt that big out here..
Mimi: lotaca! :o)
jrt: latcac:)
elisabeth: my contributions are more along the line of helping a young child that has never had a real w/ch, fitted free for their first one, that is all i can do at this time
lotaca: :-) HEY hey
jrt: lotaca:)
lotaca: ello
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erdy: that's alot elisabeth
phoenyxx: elisabeth: that's still something.
Countrybo: thatsawhole lot liz
judi: amen
elisabeth: i don't have money to give, but i do have time
lotaca: No kidding, free, that's a mountain of help
Mooooooo: Denise :o)
Amazin1: :)
Countrybo: sometimestime isfar morevaluabletha money
HelloKit: Does the pity approach get results?
lotaca: ?
Countrybo: some times time is far more valuable than money
judi: Yes, it does
Countrybo: lol
nate: some times
Countrybo: yes
jrt: depends...
phoenyxx: I was told by a local independent living counselor that their group's biggest problem is the way public support is 'fragmented' among various specific disabilities rather than a general focus on disability in general. Is that a fair observation?
Raven_: actually Phoenyxx, I was bitter towards C. R., but now i realize the importance that a celebrity brings in social-recognition
Mimi: I think it does
lotaca: It their observation :-)
elisabeth: phoenyxx, yes
Amazin1: yes, phoenyxx
Mooooooo: it also depends on the popularity of the disease
phoenyxx: Raven: true, but I'd like to see more everyday people. The disabled celbrity is sometimes bandied about to make the rest of us feel bad about complaining.
Amazin1: I volunteer for two independent living centers in my state
Raven_: or severity there of
Countrybo: popular diseases?
phoenyxx: Moooooo: exactly!
elisabeth: moo, you are so right
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Mooooooo: breast cancer gets more money than prostate cancer even though EVERY male who lives long enough WILL get prostate cancer
Mimi: true
Countrybo: true
jrt: yes you are so right Daniel:)
Mooooooo: AIDS is the most preventable disease there is yet it gets more than both
elisabeth: moo, i did not know that
Countrybo: md gets lots
lotaca: painfully true :-)
Amazin1: do you know if you are blind you get more SS benefits ?
Raven_: that's the sad-truth of reality...unless something severe hits close to home, it's little more than a myth IMO
Countrybo: moretaxbreakstoo
Countrybo: more tax breaks too
jrt: or down here anyway, children in wheelchairs get more recognition than adults do
jrt: in wheelchairs
jrt: because kids always get more sympathy
lotaca: people feel for kids, expefct compliance from adults
lotaca: expect
* Countrybo feels more sorry bout disabled kids than adults
phoenyxx: jrt: I've seen that- my aunt was telling me about a special ed elementary teacher she knows who detests disabled adults.
jrt: I fell for both children and adults that are disabled
elisabeth: country, me to
phoenyxx: jrt: I think most of us do.
jrt: feel
phoenyxx: I'm just really disapointed with the factionalism that goes on.
erdy: children should run and play
HelloKit: Some people feel the pity campaigns used by charities are degrading to people with disabilities, and defeat all the work that has been done to make us equals in society. Do you agree with this?
jrt: I dont just feel for children, but thats what they use to raise money with
judi: You're getting over my head, Simon
elisabeth: erdy, kids should be happy
phoenyxx: I agree with that Carly.
phoenyxx: judi: over your head? about what?
elisabeth: kit, yes i do
Mooooooo: hmmmm
judi: factionalism?
Mooooooo: but are we equals in society?
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phoenyxx: No Daniel, we are superior :-)
nate: it dose defeat the perpose
elisabeth: moo, that is a tought question
erdy: yes (have grandaughter with spina bifida so sensitive)
lotaca: dinner is ready, have to go, see you all on the list k?
phoenyxx: the pity approach perpetuates the 'happy crip' stereotype IMHO.
Countrybo: i dunno carly like the mda telethon they show alot of love forthe victoms and sure itsembarrasing but i dont think degrading
Mooooooo: right simon
phoenyxx: judi- factionalism is the way a large group breaks down into smaller sub-groups and fights among themselves.
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judi: thanks
phoenyxx: thank you Daniel :-)
Ritzy: Hi everyone
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phoenyxx: no prob judi :-) I get a bit technical sometimes :-)
Mooooooo: hi ritzy
Mooooooo: i'll be the first to say that I am not equal
Ritzy: Did I miss the meeting?
judi: My brain is nonfunctional tonight
Countrybo: nope crashed it lol
Mooooooo: I do not carry my equal weight in some matters
elisabeth: moo, what would you make you change your mind
Mooooooo: thats where i have to thank God for the charity of others
judi: Depends on how you view equal?
elisabeth: moo, how can you say that, when you contribute to so many lives in such a good way
jrt: I think everybody is equal, makes no difference if somebody is disabled
Mooooooo: equal in ability
jrt: it is not Daniel!!!
Countrybo: well if it werent for peoples charity i wouldnt be gettin out on my scooter, have a wheel chair and my son wouldnt be doin as well as he is
Mooooooo: because here is equality of intellect, not equality of ability
judi: Are we equal if we HAVE to have help? Are we equal if a matter of independence is dependent onothers? Or do we keep ourselves inequal because we are afraid to try to be equal?
elisabeth: moo, i understand:-)
HelloKit: Other people argue that while it may be degrading, pity gets results. If someone feels sorry for you, they are more likely to donate money to help you. Do you think there may be another approach which might even get better results?
Mooooooo: nope
Mooooooo: pity sells
judi: Unfortunately, that is true
elisabeth: yes kit, try the more positive approach, like the nike just do it approach, show the positive
Raven_: 0
jrt: Daniel you have tons of ability
erdy: must go: daughter needs computer-bye
Countrybo: I got a standing joke with my buddy he has bad hands I have bad legs together we = one whole person lol
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phoenyxx: Some people are hypocrites about 'equality'. They make it ok for things to be unequal when it's something everyone else enjoys, but harp about equality when it's something very difficult- 'everyone else does it the hard way, so should you', except
phoenyxx: that usually it's 10 times harder for the disabled person.
Ritzy: I feel that way when women expect me to open doors for them
Ritzy: .
Ritzy: he he he
judi: I don't think it would work elisabeth
phoenyxx: not what I meant!
Ritzy: I tell them I'm a feminist...even though I'm a guy
jrt: am I lagging??
jrt: or has it all gone quiet
jrt: brb
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HelloKit: brb
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Raven_: ritzy, I'm a male-feminist
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judi: Hi Ray 1
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Mooooooo: wb debbie
jrt: did I miss anything??
Mooooooo: nope
Mooooooo: lag bubble
jrt: yeah:)
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judi: Gotta go guys, wearing out again, good chat and great discussion on the list today. Night all
Ray-1: Hi, judi
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jrt: Night judi:)
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Mooooooo: i think all you have to do is look at all the Rikki and Gerry Springer type shows and see that pity and oddities earn the money
jrt: but they always have Daniel, and dont you dare compare yourself to them...
jrt: wb lisa:)
elisabeth: thanks, i really love these talks jrt
Mooooooo: debbie, the same is true for non-disabled
Mooooooo: there is no such thing as equality
phoenyxx: Am I wrong to be a little tired of the way disability is shown as some grandiose struggle for survival? I see it on TV and I can't relate to it.
Mooooooo: not for anyone
elisabeth: moo, how do you fell towards the non disabled
elisabeth: feel
Mooooooo: im ambivalent to both, elizabeth
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Mooooooo: i have compassion for those like myself are in need
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elisabeth: so you judge a person on his or her own merit
Mooooooo: but i wont blow sunshine up thier backside if they are in the wrong
tractor: dont. im the one that feels special
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nate: we mimi
phoenyxx: same here Mooooo, not meaning to sound that harsh about it.
nate: we=wb
Mooooooo: wb
Mooooooo: Carly had to go, she isnt feeling well
Mimi: thanks :o)
Mimi: awww
Mooooooo: so i'll do the last
jrt: I know that Daniel, but I dont know of many 'normal type' people who have feelings like that of so called 'Disabled' poeple
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Mooooooo: i feel that way about all people
Mooooooo: . Some people also feel that charity campaigns make it appear that all the disabled think about, all we live for, is being cured. How do you feel about this?
Mooooooo: . Some people also feel that charity campaigns make it appear that all the disabled think about, all we live for, is being cured. How do you feel about this?
elisabeth: jrt, just ask me, i have my own thoughts and worries and nightmares
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phoenyxx: Mooooo: that bothers me, sounds very harsh, but I work hard to show that my disability is not my sole identity or reason for being.
elisabeth: moo, i wanted to ask that earlier
Mooooooo: hi sam
SamB: allo
jrt: Hi Samb:)
jrt: that didn't come out the way I wanted it too lisa...
elisabeth: jrt)
Raven_: BUT being disabled is a part of who you are...why try to disway from it imo
Mooooooo: i think you're doing a good job at it too simon
jrt: yes but thats what a lot of these charities would like other people to think..
phoenyxx: Raven: no, I don't try to hide it, just that I want people to see a real person in the chair. So I can't walk, mabye never again, but in the meantime, I make videos, look for a job, and hang out with my friends :-)
Amazin1: 'nite all .....take care :)
nate: see ya
phoenyxx: thanks daniel :-)
jrt: Night Amazin:)
Raven_: I didn't say hide, I said disway
Raven_: as in redirect from
Ray-1: I have to go, too. Night, all.
Mooooooo: Amber and I had this kind of discussion before we met
Mooooooo: about visual perceptions
SamB: Someone as seen Em or Misslinux tonight?
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phoenyxx: Raven- oh- I don't try to draw all attention away from it, just make sure people see there's more about me. :-)
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rosie_: hi
Mooooooo: When I meet someone in a chair, or with some other form of disability, I see the disability first. That is now the brain functions. It looks for differences.
Mooooooo: Only afterward does the intellect of the person get noticed
jrt: I can understand what you mean daniel, but maybe I am different, but I always accept a person for who they are not what they look like
Mooooooo: that comes 2nd though, debbie
elisabeth: jrt:-):-)
elisabeth: moo, no it doesn't, not for all people
Mooooooo: when you're walking down the street and see somone who is butt ass ugly, you don't think 'wow, i bet he's smart'
SamB: Someone as seen Em or Misslinux tonight?
Raven_: what I'm trying to convey is this : i, you, and 10 mil other Americans should embrace their limitations, and by being recognised as surpassing them, others will see the importance of the disabled community as a whole
Mimi: I think Daniel is right...our brain can't help but to notice features that help us distinguish one person from the next...it has nothing to do with 'accepting' people
elisabeth: lol
jrt: I know it does with some people but I used to work with disabled people at telecom and no body ever thought of these people as being different
Mooooooo: but after seeing the persons intellect, the physical no longer matters
phoenyxx: Raven: now that's a good way of putting it! :-)
SamB: Thanks Mimi
Ritzy: can someone give me the addy for the disabled list serv?
jrt: thats true Daniel
Ritzy: I want to subscribe
Mooooooo: http://members.tripod.com/~disabled
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Mooooooo: click on the mailing list link
Mimi: http://members.tripod.com/~disabled/
Mooooooo: 10. How can we balance the need for independence with the need to continue raising funds for research, etc.?
SamB: bbl
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Ritzy: thanks
Raven_: does anyone have the ratio for disabled researchist?
jrt: maybe some of these charity organizations should be run by disabled people
elisabeth: jrt, you are right, aren't most at least councelled
Mimi: I'm sorry, I don't get the connection :o(
phoenyxx: the challenge I see is in findin ways to get the public's attention without alienating everyone.
Mooooooo: cant do it simon
jrt: I'm not sure, but that would go along way I think to helping balance out any prob;ems
jrt: problems
Mooooooo: some people feel alienated for a living
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phoenyxx: but Daniel- that's why people won't support a group, if they see it coming on too strong.
phoenyxx: Being militant is appealing but realistically, that might actually do more damage.
Mooooooo: ok, i see what you mean now
Mooooooo: i misread the statement
phoenyxx: The ones that feel alienated are the ones so into the fight that they aren't prepared for the day when the group might actually win.
Raven_: -ex. you can't tell me how being gay feels unless you're gay...or how MIMI feels to be a woman etc etc, people would research harder if they were aflicted IMO
elisabeth: raven, you are so right
Raven_: :)
phoenyxx: right on target Raven!
Mooooooo: that was the last question :o)
elisabeth: i don't feel understood as a single mom, who does my best for my kids, some people just dont understand
elisabeth: it is hard at times
&Mooooooo: stoplog