Thread: Do Charities Degrade Disabled People? Board: Oblivion / Ship of Fools.


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Posted by Squirrel (# 3040) on :
 
For several years I was involved with the disability rights movement here in New York. (For the record, I do have a disability myself- limited vision). One of the first things I learned from my comrades in arms was how much they resented many of the private charities supposedly dedicated to helping them. A particularly despised target of their anger was Jerry Lewis, whose yearly "telethons" raised millions each year for the Muscular Dystrophy Association. Lewis and MDA, my buddies claimed, brought in the bucks by portraying disabled people as needy and dependent, thus contributing to negative stereotypes about them. Charities such as his, I was taught, exist more to perpetuate themselves than to truly help those with disabilities. Full of righteous indignation, I started telling everyone I met about this.

KABOOM! Just about every able-bodied person I spoke with thought I was either nuts or unappreciative. Jerry Lewis was their hero! After all, he raised all of that money to help all of those helpless little boys and girls. I quickly learned to tread very carefully when talking about charities and their celebrity backers.

Well, years have transpired since my gung-ho radical days. I've seen some of the work that Lewis's organization does, and much of it is impressive. But I still share a strong amount of resentment towards many of the private charities out there. Having had to fight stereotypes all of my life, I do believe that charities need to do a better job in portraying people with disabilities as being capable of living full, independent lives.

Thoughts?
 
Posted by cliffdweller (# 13338) on :
 
I think the question is valid, but is broader than just disabilities. It really goes to all charities, and to some degree is the nature of fund-raising. When we give aid to countries in the developing world, we are going to show pictures of sad looking hungry children. Showing only ragged, hungry, sick children means stereotyping Africans and not showing all the ways it is developing and expanding, or the millions of educated professionals. But it's hard to go into all the intricacies and diversities in what's probably going to be a 5 minute sound bite where you need to capture people's hearts and attention before the next new shiny object comes on.

Mosts charities are based on generalized portrayals of a certain group of people, even though the individuals within that group are obviously going to vary greatly in their level of need (as well as other factors like likeability or whatever someone thinks makes them "deserving"). But the charity, in order to make the appeal, is going to focus on the worst-case scenario in order to heighten the sense of urgency.

When my daughter was small, her father (my ex) was incarcerated. I had already remarried by that time, was employed, and lived in a nice condo with a stable middle class lifestyle. But her name was put on a Xmas tree at a local church (without our requesting it) that provided Xmas gifts for children of inmates. I felt pretty uncomfortable about that-- some nice young couple who may have had less money than we did sacrificing to buy gifts that we didn't ask for for my daughter. I know my daughter felt harmed by being labeled as "that poor inmate's daughter", and that the stereotype didn't fit. But I acknowledge that there may have been plenty of other families where the gesture was important or helpful.
 
Posted by Timothy the Obscure (# 292) on :
 
Private charity always strips the dignity from its beneficiaries. The covert message is always about the subordinate supplicant role versus the dominant benefactor.
 
Posted by Evangeline (# 7002) on :
 
quote:
Originally posted by Timothy the Obscure:
Private charity always strips the dignity from its beneficiaries. The covert message is always about the subordinate supplicant role versus the dominant benefactor.
I'm not convinced that so long as the government is the middle man in charity that makes it all that more dignifying for the recipient.

I suffer (yes really) from type 1 diabetes. I have no problem with charities showing ads with kids jabbing themselves with needles or looking sad-I would like to see more of them actually if it increases funds raised to support medical research for a cure/improved treatments for type 1 diabetes.
 
Posted by anoesis (# 14189) on :
 
quote:
Originally posted by Timothy the Obscure:
Private charity always strips the dignity from its beneficiaries. The covert message is always about the subordinate supplicant role versus the dominant benefactor.
Charity, per se, maybe. Charities, not necessarily. I work for a University and have ongoing relationships with a number of 'private charities' because they provide absolutely vital research funding* in search of cures for various diseases or disorders. I think it is perfectly possible for a charitable organisation to seek donations in order to contribute to research about a condition without resorting to demeaning any of those living with the condition - or implying that because they can't carry out medical research for themselves, they are somehow 'lacking'.

It's also worth noting that many charitable organisations focused around a disease or disorder often involve a proportion of those living with the condition on their staff or their boards, and most that I am aware of (including those who don't fundraise for research), do a fair amount of advocacy/consciousness raising/education/lobbying as part of their core activities, in addition to acting as a support network for members and their families. There is a lot more to 'charity' than doling out soup to orphans or drug addicts.

*Believe me, in this relationship, the researcher is the supplicant (as well as the applicant).
 
Posted by South Coast Kevin (# 16130) on :
 
quote:
Originally posted by Squirrel:
Charities such as his, I was taught, exist more to perpetuate themselves than to truly help those with disabilities.
This is certainly a strong thread running through the discussion in the UK, both within the charity / non-profit sector itself and the wider community of journalists, politicians etc. It's usually focused more strongly on those charities with big government contracts, though, rather than fundraising charities like the one you mentioned. The latter are seen in a broadly positive light in the UK, I think.
 
Posted by PeteC (# 10422) on :
 
As a disabled person myself, I have often been the unwilling recipient of charity. This despite being gainfully employed for all my adult working life and a volunteer in the community.

I am very careful to ensure that I do not unwittingly offend others with casual charity. Christmas gift trees being one example. I try to ensure that a person's name is there because they have applied for help. For this reason I avoid the large "helping" charities and focus on small local ones.
 
Posted by Niteowl (# 15841) on :
 
One of the things I truly regret is that when I was 5 I was one of those child representatives of one of those charities and I can tell you it DID contribute to the image of "those poor helpless children". Unfortunately, that image carries through into the public's opinion of adult disabled. Even into the 2000's there were co-workers who were under the impression that I'd be unable to fulfill my duties and that they'd have to "pick up the slack" when I was first hired. They learned very quickly that I was quite capable and didn't need their pity or their help. There has to be a better way to raise money for charities that do research or do assist the disabled without giving negative images of the disabled.
 
Posted by LeRoc (# 3216) on :
 
In my experience, charities working with disabled people can be very good, whether they are public or private. In many countries, these contributions are still a necessity. But it really depends on how you do it.

There are different ways, but my personal favourite is to build partnerships with organizations who are made up of disabled people, and let them decide on how to spend the money.
 
Posted by anoesis (# 14189) on :
 
quote:
Originally posted by Niteowl:
There has to be a better way to raise money for charities that do research or do assist the disabled without giving negative images of the disabled.
How about this? (sound is very low for some reason) http://vimeo.com/11104821 No mention of 'sufferers' or 'victims' at all.
 
Posted by Liopleurodon (# 4836) on :
 
A few thoughts on this. I remember when I was a young child in the mid 1980s and kids/parents from our school went around the neighbourhood with groceries we'd collected for the harvest festival, and gave them to local elderly people. A few times it was clear (although the recipients were too polite to say so directly) that this was considered very insulting - people didn't want someone else's discarded tinned food just because they were old.

I've also come into contact with some fairly misleading advertising for a children's charity. It was one of those "£5 will pay for... £20 will pay for..." print adverts. It said something along the lines of "£5 will pay for a foster child to go to the cinema with his independent visitor, and have a shot at a normal childhood for once." So many issues with this. Firstly, the last thing that kids in foster care need is another message that they are to be pitied, that their lives are blighted forever and they will never really be "normal" children. They are disadvantaged in many ways but the "poor little orphan" line makes it worse not better. It also minimises the impact that other people can have on a foster child's life. Secondly, the provision of independent visitors is a service that local authorities pay this charity for - the whole cost of the scheme is paid for by taxpayers. I think it's a worthwhile use of public funds, but nonetheless it's not where your donation would go. Thirdly, £5 is nothing like the cost of one independent visitor's visit. Don't be silly.

But you do find this a lot. Where charities are doing really good work, they often have to put a certain spin on it to attract the right kind of support. I know of another charity who were providing free condoms, counselling and sexual health services to young sex workers - male and female. Very worthwhile work. They kept this side of their efforts very, very quiet though - it was never publicised because it might scandalise conservative Christian donors. Fundraising publicity is targeted at what works - it's not necessarily a reflection of what the bulk of day to day work for the charity is.

The issue of disability charities is perhaps a little close to me personally for me to be entirely objective about it. But there is a huge war going on in the world of autism-related charities. On the one hand you have the view that autism is a blight on humanity, and it ruins lives, and we need to find a way to rid the world of it. On the other you've got ASD people who consider it an important part of their identity and find the idea of a cure is insulting. I don't see this being resolved any time soon. The UK Autistic Society walks a very fine line in trying not to anger either group and seems to be doing pretty well so far.
 
Posted by Jane R (# 331) on :
 
A similar thing goes on with deaf and Deaf people - for those who have been Deaf from birth or soon afterwards and have a sign language as their first language, it's an important part of their identity and they don't see themselves as disabled. For people who experience progressive hearing loss as they age or who are deaf as the result of an accident/illness, bring on the hearing aids and cochlear implants; they want to be able to hear again.

I think part of the problem is neoliberalism - There Is No Such Thing As Society, etc etc. If you are not capable of looking after yourself unaided you are seen as deficient in some way. The truth, of course, is that all of us will be disabled in some way if we live long enough and most of us are not physically perfect (certainly not me).

And some of the changes brought in by the previous government to help disabled people also benefit others who would not consider themselves disabled. Wheelchair-friendly buses, for example, which make it easier for people with pushchairs and wheeled shopping trolleys to use public transport.
 
Posted by Moo (# 107) on :
 
I once saw a severely disabled woman on a talk show. She was in a wheelchair with a head support, and her speech was difficult to understand.

She said that many people give to charities to help disabled children so that they won't have to see adults like her. They want to think that they can make all problems of this type go away.

Moo
 
Posted by Raptor Eye (# 16649) on :
 
It's surely understandable when powerless people, 'done to' without any say, are resentful of what's being done on their behalf, however well-meaning the action is.

I was shocked to hear that some of the people who receive food aid, rather than being grateful for what's being given to them, see it as a guilt offering from those who have more than enough. I have reflected upon it since.

If we're really serious about treating every human being with dignity, listening to them and facilitating their own efforts toward a sustainable way of life must be a priority. Some charities are better at doing this than than others.
 
Posted by Belle Ringer (# 13379) on :
 
I just recently finished a course from Coursera (coursera.com, almost 200 college level interactive courses free) on "gamification" which is really about motivation.

The course emphasized the critical importance of three features to keep people gladly involved in a project -- autonomy and purpose were two of the three (mastery was the third). Or in a different analysis the emphasis was on meaningful choices.

I hadn't thought about the application to charity, but if we just show up at someone's door with a box of groceries or some clothes -- even new clothes -- that they didn't have any input to selecting, we are keeping to ourselves the autonomy and purpose and meaningful choices, the receiver has to be near desperate to value a box of food selections not of their choice in exchange for accepting the depersonalization of giving up these basic human drives.
 
Posted by tclune (# 7959) on :
 
I think of two models for charity that my local church has used. For Thanksgiving, they used to get a list of folks "needing help," and show up at their doorstep with a turkey and other food goods uninvited. This is wrong on so many levels it's hard to count them all. Currently, we operate a food pantry that is available to the community, and folks come if they find it of value to them. I have no problems with that model at all. Of course, YMMV.

--Tom Clune
 
Posted by maryjones (# 13523) on :
 
I have been following this with care as I am a trustee for a local charity, giving mainly money. We do not give unasked hand-outs to people. Anybody local can write in to explain their problem and how we can help. If we can, we do.
The person involved does not have to meet the trustees and is often referred from social services. Our main limits are geographical. It is not our own money.
Any ideas how we could improve our service are welcome!
 
Posted by Porridge (# 15405) on :
 
I work with/for people who have disabilities, many quite profound.

Here are my issues with charity:

Christmas and Pieces on Earth

Where I live and work, every school choir plus every school do-gooder*cough*social service club in a 50-mile radius wants to come put on a party or concert or some other damn thing for the poor crazies, crips, and retards served by my agency. While I appreciate these warm intentions, what I wish is that some of these well-meaning folk would spread the joy around the calendar a little. Why not take somebody out for a birthday lunch, your or theirs? To an Easter egg hunt? Out trick-or-treating with a beer stein on Halloween, or to your house for Thanksgiving dinner? To a Passover seder, or any one of various Eids? How about sending a Valentine? When it comes to Valentines, my entire caseload consists of Charlie Browns.

Because guess what? Most of my clients would actually rather celebrate Christmas with family and friends (just like you! and yes, they make and maintain friendships!), not a pack of well-meaning anonymous strangers who will never be seen again.

Plus, oh dear Lord, please let these people know that just because THEY think 45-year-old Mr. X has "the mind of a 4-year-old," that doesn't make a Winnie-the-Pooh bear an appropriate gift. Mr. X, despite not being frightfully clever, would actually prefer a couple of sudoku mags. He's crap at the puzzles, but he loves filling in the little boxes (and it also improves his fine motor skills and eye-hand coordination). If we said "yes" to all the offers we get (we can't, because it would blow our service schedule and transportation budget carting all our folks from home or supported workplace to a central gatheringplace for each shindig), our clients would spend the entire month of December on a steady diet of candy canes and insipid alcohol-free punch, sitting bewildered in rings of grey metal folding chairs around the edges of large rooms listening to music they're not interested in and watching a parade of volunteer Santas hand out impersonal gimcracks.

Please: come be generous on Labor Day or the Fourth of July. Loan them the use of your pool. Put on some fireworks. Spike their drinks. Take them to the polls on Election Day.
 
Posted by PeteC (# 10422) on :
 
quote:
Originally posted by Porridge:
I work with/for people who have disabilities, many quite profound....

Here are my issues with charity: well-meaning anonymous strangers who will never be seen again...

Do you know me? Thank you for this!
 
Posted by Sir Pellinore (# 12163) on :
 
A person with a disability is still a person.
 
Posted by Squirrel (# 3040) on :
 
The condescending attitude towards people with disabilities in our society extends also towards those who work with and care for them. Not only do I have a disability but I am a social worker, and once had a job in which I had to literally put kids with Muscular Dystrophy onto the toilet and wipe their behinds. I quickly grew sick of the patronizing attitudes I'd get from people who'd talk about how much they "admired" me for helping "those people," something that they themselves could never do. It was if I was some sort of saintly goodie-goodie for helping those whom the rest of society would rather ignore.

This "admiration" that so many people feel towards those of us in the helping professions does not motive our society to provide us with decent pay or status. Nowadays when people tell me that they "admire" what I'm doing I tell them to write their politicians and urge them to give me a pay raise.
 
Posted by Lamb Chopped (# 5528) on :
 
Thanks for this. I never know what the hell to say to those people.
 
Posted by Jane R (# 331) on :
 
<slight tangent inspired by Moo's post>

I do wonder if part of the problem is that (visibly) disabled people are an uncomfortable reminder to the rest of us that modern medicine can't fix everything and that we're all just a car-crash away from quadriplegia...

Also, people in public spaces can be very intolerant of more slow-moving others (with apologies to Oscar Pistorius who would be crossing the finishing line while I was still coming out of the starting blocks if I were ever misguided enough to try and race against him). I noticed this when my daughter was small and most of my trips into the city centre involved a pushchair and a large bag full of nappy-changing equipment.
 
Posted by Liopleurodon (# 4836) on :
 
quote:
Originally posted by Jane R:
Also, people in public spaces can be very intolerant of more slow-moving others (with apologies to Oscar Pistorius who would be crossing the finishing line while I was still coming out of the starting blocks if I were ever misguided enough to try and race against him). I noticed this when my daughter was small and most of my trips into the city centre involved a pushchair and a large bag full of nappy-changing equipment.
I think that's because when you're in a city space surrounded by others you have to tone them out as individual humans otherwise you'd find them overwhelming. So instead they're seen as objects and obstacles. I know I do this.
 
Posted by Jane R (# 331) on :
 
I do it too - now that my daughter is old enough to move under her own steam I have joined the people who tut at the slow-moving OAPs and rubbernecking tourists...

I try not to, though. Someday I will be the octogenarian walking Very Slowly with the aid of a zimmerframe towards the city library. If it still exists when I'm eighty, which is not looking likely at the moment.
 
Posted by Niteowl (# 15841) on :
 
quote:
Originally posted by anoesis:
quote:
Originally posted by Niteowl:
There has to be a better way to raise money for charities that do research or do assist the disabled without giving negative images of the disabled.
How about this? (sound is very low for some reason) http://vimeo.com/11104821 No mention of 'sufferers' or 'victims' at all.
Most definitely a start - I liked it. I'd also love some ads showing the disabled as active, participatory and valuable members of society, rather the little child who just stands/sits there looking cute, but very much disabled.
 
Posted by tclune (# 7959) on :
 
quote:
Originally posted by Niteowl:
I'd also love some ads showing the disabled as active, participatory and valuable members of society, rather the little child who just stands/sits there looking cute, but very much disabled.
Of course, the real test of whether you are viewing such folks as full members of society is not whether you encourage them to participate, but whether you demand that they do so. We don't celebrate other members of society for going to work -- we vilify them for shirking their responsibilities if they don't. Just something to think about.

--Tom Clune

[ 11. October 2012, 14:34: Message edited by: tclune ]
 
Posted by cliffdweller (# 13338) on :
 
quote:
Originally posted by Niteowl:
quote:
Originally posted by anoesis:
quote:
Originally posted by Niteowl:
There has to be a better way to raise money for charities that do research or do assist the disabled without giving negative images of the disabled.
How about this? (sound is very low for some reason) http://vimeo.com/11104821 No mention of 'sufferers' or 'victims' at all.
Most definitely a start - I liked it. I'd also love some ads showing the disabled as active, participatory and valuable members of society, rather the little child who just stands/sits there looking cute, but very much disabled.
But the question isn't, would you enjoy it, but would you give? Would others? The reason charities use ads with children looking cute but disabled is, I'm guessing, the same reason we show African children w/ swollen bellies sitting in squalor, rather than laughing and playing soccer, as most do. Because that's what sells. It creates a sense of urgency, of need.
 
Posted by Marvin the Martian (# 4360) on :
 
quote:
Originally posted by Jane R:
Someday I will be the octogenarian walking Very Slowly with the aid of a zimmerframe towards the city library.
So will I, but when that day comes I hope I'll have the common decency to do so outside of rush hour.
 
Posted by Porridge (# 15405) on :
 
quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Jane R:
Someday I will be the octogenarian walking Very Slowly with the aid of a zimmerframe towards the city library.
So will I, but when that day comes I hope I'll have the common decency to do so outside of rush hour.
And when it's my turn, I hope to have hung onto enough of my marbles to move from the center to the side of the aisle or pathway.

[ 11. October 2012, 14:23: Message edited by: Porridge ]
 
Posted by Jane R (# 331) on :
 
Well, if you don't have to subject yourself to rush hour it is only common sense to avoid it, mainly because of the large numbers of commuters who will knock you down and blame you for being in their way while they tread on you.

You might wish to consider that most of the people who are holding you up in the rat race are probably there because they didn't have a choice about when to travel. Even an octogenarian may have a dentist's appointment at 9 am.
 
Posted by Porridge (# 15405) on :
 
Sorry to double-up, but it strikes me that charity may not be the real core issue here.

How about a little justice?

It's justice which would require us as a society to develop a system of disability supports that doesn't impose dire poverty on those unable to work. It's justice that would require we not expect people making $10 an hour to pay for their own PAs (or motorized wheelchairs, for that matter). It's justice that would demand we pay a living wage to those saintly, patient people (TM) who wipe bottoms.

It's justice that would require us to view all of us as humans rather than as poor wretches.

Charity is necessary because justice is denied.

[ 11. October 2012, 14:30: Message edited by: Porridge ]
 
Posted by lilBuddha (# 14333) on :
 
quote:
Originally posted by Liopleurodon:
I think that's because when you're in a city space surrounded by others you have to tone them out as individual humans otherwise you'd find them overwhelming. So instead they're seen as objects and obstacles. I know I do this.
Understanding the psychology behind this statement can help one understand the average person's behaviour towards the disabled.
 
Posted by Belle Ringer (# 13379) on :
 
quote:
Originally posted by Jane R:
Well, if you don't have to subject yourself to rush hour it is only common sense to avoid it,
Perhaps some elderly who haven't been in the work force for a decade or two kinda forget when rush hour is? Any of us sometimes get caught in it by accident.

Somewhat related, I tried to train my Mom to carry a cane as if using it even if she didn't need it, that's what I do if a knee is acting up and I'm going to be moving slowly. It's a visual signal that there is a reason to be crossing the street slowly, you get beeped at far less. She refused because she didn't want to be perceived as "old."
 
Posted by Niteowl (# 15841) on :
 
quote:
Originally posted by tclune:
quote:
Originally posted by Niteowl:
I'd also love some ads showing the disabled as active, participatory and valuable members of society, rather the little child who just stands/sits there looking cute, but very much disabled.
Of course, the real test of whether you are viewing such folks as full members of society is not whether you encourage them to participate, but whether you demand that they do so. We don't celebrate other members of society for going to work -- we vilify them for shirking their responsibilities if they don't. Just something to think about.

--Tom Clune
Most people, at least up until very recently, assume that disabled people don't work, that they sit at home and collect the disability check. I've picked up quite a bit of bitterness from folks aimed at me, even though I worked for the vast majority of my adult life. Wouldn't it be nice to show that for their dontation to assist the disabled get medical supplies and on the job training, and other needs etc., then showing the disabled being just like every other contributing member of society? I worked from the age of 16 up until my fifties when my health no longer allowed it, but for every one of those years people assumed I was one of those poof helpless folk who was on the dole. I think people would love to see their donation enables those they once though helpless imbeciles to provide for themselves and actually have a fairly good life.

Just an aside, I was working for Vocational Rehab and was calling employers to see if they would provide on the job training if we provided the pay and the taxes due the government for that employee. One employer asked me "The ones in wheelchairs - do they have any intelligence?" I had to ask myself if I wanted my job and maybe get someone else a job, so I answered sweetly "yes, they do.", even though I'd have loved to A) let him know I was in a wheelchair and b) given an extremely sarcastic answer that would have shed light on his intelligence. I didn't.
 
Posted by Aravis (# 13824) on :
 
Years ago I worked in a special unit for teenagers with physical disabilities, attached to a large secondary school. All the staff in the unit used to dread Children in Need week. The local paper would turn up to take photos of our sweet kids in their wheelchairs, and then the sweet kids would decide they were too disabled to do any of the things they could normally manage for themselves. It would take the best part of a month to persuade them back to their previous levels of independence.
 
Posted by Twilight (# 2832) on :
 
quote:
Originally posted by Porridge:
I work with/for people who have disabilities, many quite profound.

Here are my issues with charity:

Christmas and Pieces on Earth

Where I live and work, every school choir plus every school do-gooder*cough*social service club in a 50-mile radius wants to come put on a party or concert or some other damn thing for the poor crazies, crips, and retards served by my agency. While I appreciate these warm intentions, what I wish is that some of these well-meaning folk would spread the joy around the calendar a little. Why not take somebody out for a birthday lunch, your or theirs? To an Easter egg hunt? Out trick-or-treating with a beer stein on Halloween, or to your house for Thanksgiving dinner? To a Passover seder, or any one of various Eids? How about sending a Valentine? When it comes to Valentines, my entire caseload consists of Charlie Browns.

Because guess what? Most of my clients would actually rather celebrate Christmas with family and friends (just like you! and yes, they make and maintain friendships!), not a pack of well-meaning anonymous strangers who will never be seen again.

Plus, oh dear Lord, please let these people know that just because THEY think 45-year-old Mr. X has "the mind of a 4-year-old," that doesn't make a Winnie-the-Pooh bear an appropriate gift. Mr. X, despite not being frightfully clever, would actually prefer a couple of sudoku mags. He's crap at the puzzles, but he loves filling in the little boxes (and it also improves his fine motor skills and eye-hand coordination). If we said "yes" to all the offers we get (we can't, because it would blow our service schedule and transportation budget carting all our folks from home or supported workplace to a central gatheringplace for each shindig), our clients would spend the entire month of December on a steady diet of candy canes and insipid alcohol-free punch, sitting bewildered in rings of grey metal folding chairs around the edges of large rooms listening to music they're not interested in and watching a parade of volunteer Santas hand out impersonal gimcracks.

Please: come be generous on Labor Day or the Fourth of July. Loan them the use of your pool. Put on some fireworks. Spike their drinks. Take them to the polls on Election Day.
I'm sure we'd get that wrong, too. We would give someone a drink whose meds didn't mix well with alcohol or take someone to the polls who would be turned away at the last minute because they hadn't registered. After all, if we're expected to know somehow that the person with the four year old mind likes sudoku booklets then there must be a hundred other things we won't know.

My husbands choir sang carols at the local nursing home last Christmas Eve and he said that they were thanked and hugged by lots of old people. It's a good thing he didn't know what they were really thinking.

My favorite charity is one for schizophrenia research and, believe me, if showing pictures of mentally ill people eating out of garbage cans moved others to send money, that would be just fine with me even though I know full well that many people with serious mental illnesses are able to hold down responsible jobs and live "normal," lives.

The woman Moo saw on Oprah who says people give to charities because they don't want to think about people like her? How does she know what the givers are thinking? Is the money only useful if it comes from a person with a perfect soul who is thinking just the right thoughts? Do we have to screen the donations to make sure nobody felt a smidgen of pride when writing the check?

Our town was lucky enough to have been given an old school for the combined churches to use for charity. One side takes in donated clothing, sorts it and hangs it according to size on racks in the gymnasium. Anyone who wants to can come once a week and fill a bag with as much clothing as they want. We keep track that it's only one large bag a week solely to keep someone from using the resource to open a shop.

The other side of the building provides a food pantry and hot dinners three times a week. Anyone at all can line up for the meals but the food pantry does require a voucher from the local family services. The main reason for that is to ensure that these people are signing up for the government benefits they need as well as the free food.

There's always criticism though. The clothes aren't stylish enough, there's brown bread instead of white, and old Mrs. Jenkins, who has been on her feet cooking for hours has a pained expression on her face so she must be all superior and judgmental.
 
Posted by Grits (# 4169) on :
 
I think it can often be very difficult to ask for help without some kind of loss of dignity. But I believe it can be done. I think Michael J. Fox has been a great advocate for Parkinson's Disease, mainly because he has not presented himself as a victim but as a spokesperson.

Some operate with the mindset that they'll do whatever it takes to get folks to contribute. I guess that's OK, as long as they have the expressed consent of any who are used in advertising, and as long as they are truthful in what they present.

There are just so many causes out there -- it is a real competition for donations. But I think that any time a disabled person can be involved in a support organization as a participant as much as a recipient, that it can be very beneficial to maintaining a more functional relationship with the general public.
 
Posted by Porridge (# 15405) on :
 
quote:
Originally posted by Twilight:
I'm sure we'd get that wrong, too. We would give someone a drink whose meds didn't mix well with alcohol or take someone to the polls who would be turned away at the last minute because they hadn't registered. After all, if we're expected to know somehow that the person with the four year old mind likes sudoku booklets then there must be a hundred other things we won't know.
You're right. Of course we'd get it wrong. How could we not? We don't know these people.

And that's really the point. I'm glad the people where your husband's choir sang enjoyed the music. Probably some of my clients might have, too.

But imagine how much more they might enjoy it sung by people they knew. Imagine how much any one of them might enjoy having a buddy from "outside" who'd visit and get to know them and take a personal interest in them and take them out (those get-outable, anyway) once in a while.

The folks on my caseload think my staff are their friends. How many of your friends get paid to spend time with you? And to be sure, occasionally staff get emotionally attached to some clients. They request to spend genuine social time with these clients, and I have to say no; it's too confusing, sends the wrong messages, and will ultimatley almost certainly cause harm to the client when staff Y goes on maternity leave or staff Z moves to another state, etc.

Clients have friendships with each other -- a few -- and some still have connections to family. But clients often take advantage of one another's foibles. Still others have been abandoned by their families, and for understandable reasons: alas, our Mr. Xs are not always easy to like. Or love. Or even work with.

Those who have jobs know a couple of co-workers who may or may not treat them kindly while at work, but who never take them out for coffee or invite them home to watch a game or share a meal.

My clients "live in the community," but what does this mean? They're part of no groups. They're mostly avoided by so-called "normal" people. When not avoided, they're often preyed upon.

Statistically speaking, perhaps 1 in 10 people has a significant disability. If you're not "disabled" (whatever that means) how many friends do you have? 20? 50? How many of those friends have significant disabilities? 2 out of 20? 5 out of 50?

All I'm saying is that -- in this US of A, anyway -- our long-term practice of shutting folks up in remote locations and forcibly segregating them from the rest of the population has not had especially positive effects for either group.

"We" -- so-called "normal" people -- have lost any idea (if we ever had one) of how to relate to the Mr. Xs now in our midst, and Mr. X is having the devil's own time getting and keeping some sort of comfortable place in our society for himself. Instead, he's bewildered, frightened, and lonely, and he is sometimes abused. Having grown up in an institution where everything was done -- and decided -- for him, he doesn't even know what he wants. Indeed, he doesn't know HOW to want. It's a foreign concept.

And, as someone who works with a number of very lonely Mr. & Ms. Xs, I wish we could figure out how to include one another more fully in the society we all share.

There are, of course, people who must remain inside institutions -- violent offenders, people who cannot control assorted unacceptable behaviors, people too medically fragile to be out on their own, etc. Such individuals, since they're essentially under lock and key, are no doubt very grateful for the parties and concerts which come their way and break up the narrowness and monotony of institutional life.

I am serving a different group of people. They are not institutionalized (though some of them have been). Neither, however, have they been integrated into any kind of community existence.
 
Posted by Raptor Eye (# 16649) on :
 
quote:
Originally posted by Belle Ringer:
I just recently finished a course from Coursera (coursera.com, almost 200 college level interactive courses free) on "gamification" which is really about motivation.

The course emphasized the critical importance of three features to keep people gladly involved in a project -- autonomy and purpose were two of the three (mastery was the third). Or in a different analysis the emphasis was on meaningful choices.

I hadn't thought about the application to charity, but if we just show up at someone's door with a box of groceries or some clothes -- even new clothes -- that they didn't have any input to selecting, we are keeping to ourselves the autonomy and purpose and meaningful choices, the receiver has to be near desperate to value a box of food selections not of their choice in exchange for accepting the depersonalization of giving up these basic human drives.
Thank you for this, Belle Ringer. It may also have an application in welfare systems and many aspects of church life as well as the way charities operate. If we want people to continue to contribute to the society in which they live, whatever their circumstances, it's clearly important to consider how to encourage them to master whatever is necessary, while ensuring that they have autonomy and are able to express and pursue their own sense of purpose, without trying to superimpose our own.
 
Posted by Eleanor Jane (# 13102) on :
 
quote:
Originally posted by PeteC:


I am very careful to ensure that I do not unwittingly offend others with casual charity. Christmas gift trees being one example. I try to ensure that a person's name is there because they have applied for help. For this reason I avoid the large "helping" charities and focus on small local ones.
Ooh, don't do that! Large charities don't necessarily 'impose' their support on receipients and small charities don't necessarily not impose (clunky sentence, but you get what I mean, I hope). In my experience working for large charities, they can't afford to push support and resources onto those who don't urgently want and need them. Of course there is insensitivity and inappropriateness (sometimes on a huge scale) but again, I don't think that's directly related to the size of the organisation.

And about Cliffdweller and Niteowl's conversation re: fundraising ads...

As you mentioned, Cliffdweller, it's about the conflict between what 'sells' to get the general public to give money vs. the image that the charity/ its receipients would like to push in an awareness/ social justice sense. Very difficult and touchy. For example, children are almost always more attractive to the public than adults. Animals like cute puppies are good too. The common theme is 'here's the current state. With your money we could have X lovely future state' i.e. little Sally could grow up to be a teacher or whatever).

Or you can go for the 'Oh poor you, there's such a great need here' approach but I think that's become less popular for local charities (still okay for overseas). I think advertising has become more about specific actions i.e. cancer awareness has turned into cancer action.

I must say, I was completely shocked by the depth of angst in the disability community about these sorts of issues. There is a lot of in-fighting which could be more fruitfully turned outward, in my humble opinion. Also, more teamwork needed. But don't get me started on that one. [Big Grin]

Cheers,
Eleanorjane

PS - in answer to the question 'Do charities degrade disable people' I say "They can do, but they usually don't intend to. They can also mean the difference between someone having the skills, equipment and support necessary to live a fulfilled life. Disability charities can also work on educating and challenging our society to be less disabling."

[ 11. October 2012, 21:46: Message edited by: Eleanor Jane ]
 
Posted by Evangeline (# 7002) on :
 
quote:
Originally posted by Porridge:
Sorry to double-up, but it strikes me that charity may not be the real core issue here.

How about a little justice?

It's justice which would require us as a society to develop a system of disability supports that doesn't impose dire poverty on those unable to work. It's justice that would require we not expect people making $10 an hour to pay for their own PAs (or motorized wheelchairs, for that matter). It's justice that would demand we pay a living wage to those saintly, patient people (TM) who wipe bottoms.

It's justice that would require us to view all of us as humans rather than as poor wretches.

Charity is necessary because justice is denied.
I'm really struggling to work through this. Surely your notion of justice (with which I broadly agree) is reliant on the assumption that certain people are unable to care for themselves without help and the majority of the population is content for a portion of their hard-earned resources to be redistributed to those "in need". Your notion of justice looks pretty much like charity by another name to me.
 
Posted by Lamb Chopped (# 5528) on :
 
And that's probably the nub of the problem. If you call it justice, it's obligatory and nothing to pat oneself on the back about. If you call the same thing charity, it's optional and often becomes a "make me myself feel good" activity, even at the expense of those helped.

I remember a year when someone just showed up at our ethnic church with a black trash bag full of stuffed animals. He walked up to the chancel, called the children to come forward, and started giving them out--while the pastor and people were still shocked speechless. Later we had to listen to a bunch of indignant parents. "Do those people think we can't buy toys for our own children?" Well, yes, they obviously do. and nobody took the trouble to ask first what would be welcome or needed. We didn't say any of that, though. Instead we encouraged them to show Christian charity by bearing with their, um, thoughtless neighbors. [Devil]
 
Posted by Evangeline (# 7002) on :
 
quote:
Originally posted by Lamb Chopped:
[QB] And that's probably the nub of the problem. If you call it justice, it's obligatory and nothing to pat oneself on the back about. If you call the same thing charity, it's optional and often becomes a "make me myself feel good" activity, even at the expense of those helped.
Does the attitude of the "giver" or the terminology they use determine the dignity of the recipient?

I see plenty of people patting themselves on the back saying how good they are because they speak out about social justice via social media/in person or traditional media.

Another huge part of calling something "justice" is how scarce resources should be allocated by a just society. This is where the notion of justice being obligatory falls down severely. Who decides what level of disability disqualifies somebody from the obligation to look for work? There are different types of medical treatments, prostheses and mobility aids with wildly differing costs, who decides what is a just way of allocating these-should taxpayers spend millions of $s for better wheelchairs when that same amount of money could provide a new type of cancer treatment, support in schools for those with learning disabilities etc etc? It seems to me, in Australia anyway that many of these grey areas of financial and practical aid are filled by charities.

THere'll always be misguided and ignorant philanthropists but doesn't that mean those who know better should spend some time working and communicating with said philanthropists instead of castigating them?

The giving out of toys thing in your ethnic church is really weird (although it doesn't seem to be the act of a charity rather the act of an individual trying to be charitable). It's not acceptable to give things to children without their parents' permission in any circumstance, that's much more a safety and hygiene thing more than a dignity one IMO.
 
Posted by Squirrel (# 3040) on :
 
When I was involved in the disability rights movement there was a term we had for non-disabled people: TAB- for "Temporarily Able-Bodied." The idea, of course, was to remind folks that, if they live long enough, they'll probably have disabilities themselves.

I think this is one reason why so many people shun the disabled: they don't want to be reminded that they may very well be in the same boat.

As for charity solicitations that feature the disabled as helpless, I think that the charities use them for two reasons: ONE: it brings in the money. Maybe it's pity. Maybe it's guilt. But unfortunately, it works. TWO: keeping disabled people dependent helps justify the existence of the charitable organization. I know of one charity which served people with developmental disabilities, many of whom were capable of gainful employment. But the charity got more money by keeping its clients in special sheltered workshops. So it discouraged independent employment.
 
Posted by Nicolemr (# 28) on :
 
To a certain extent it's probably unavoidable. To get donations to your charity, you have to make people aware of what the charity does. That automatically means showcasing your clients in some way. The trick is to do it with as little diminuation as possible, but I don't think it's avoidable that there should be some. After all, if they didn't need the charity, what is the point of the charity at all?
 
Posted by Niteowl (# 15841) on :
 
quote:
Originally posted by Eleanor Jane:

I must say, I was completely shocked by the depth of angst in the disability community about these sorts of issues. There is a lot of in-fighting which could be more fruitfully turned outward, in my humble opinion. Also, more teamwork needed. But don't get me started on that one. [Big Grin]

Cheers,
Eleanorjane

PS - in answer to the question 'Do charities degrade disable people' I say "They can do, but they usually don't intend to. They can also mean the difference between someone having the skills, equipment and support necessary to live a fulfilled life. Disability charities can also work on educating and challenging our society to be less disabling."
A good reason for the angst is the crap we disabled have had to put up with from the non disabled community who've bought into the "oh, poor you" line of thinking making our lives much harder than they needed to be. I had an extremely hard time finding work due to my disability - was even told I wasn't going to hired because I was disabled, was told by one supervisor everything bad my co-workers had said about me prior to my starting work as they had discussed my disability (since when is it proper to discuss someone's personal issues with employees at large?), was turned down for apartments because of my disability, etc. etc. etc. There is no need to resort to pity to raise money. Show the positive things money can do. The Easter Seal Society always showed "the poor little children" looking pitiful, but not being able to play with other children as a result of new braces or a wheelchair supplied by ESS or adults who had been gone through job training and now held down productive jobs and lived on their own. There is NO need to resort to pity to raise funds for the disabled.

As for divisions within the disabled population, there are still those who grew up in schools for the disabled. My parents yanked me out long before mainstreaming came into being. Even after mainstreaming became common disabled kids were segregated from other students. I remember a conversation I had with a teacher on a high school campus I worked on about that segregation. She felt very strongly that disabled kids needed to segregated, that they couldn't handle the stress and education level of "normal kids". Having been raised in a completely non disabled college prep environment I felt the kids could live up to whatever expectations and environment they were in. I'm now hearing rumbles from the "normal" community about getting rid of disabled students as they don't want their kids exposed to "those kind" and it makes my blood boil. There are radicals in the disabled community who feel the "normal" community should pay for the way things were for so long and those of us who are happy with a few adjustments likes ramps, elevators and a bathroom wide enough to pull a wheelchair into.
 
Posted by Liopleurodon (# 4836) on :
 
quote:
Originally posted by Niteowl:
Most people, at least up until very recently, assume that disabled people don't work, that they sit at home and collect the disability check. I've picked up quite a bit of bitterness from folks aimed at me, even though I worked for the vast majority of my adult life. Wouldn't it be nice to show that for their dontation to assist the disabled get medical supplies and on the job training, and other needs etc., then showing the disabled being just like every other contributing member of society? I worked from the age of 16 up until my fifties when my health no longer allowed it, but for every one of those years people assumed I was one of those poof helpless folk who was on the dole. I think people would love to see their donation enables those they once though helpless imbeciles to provide for themselves and actually have a fairly good life.

Just an aside, I was working for Vocational Rehab and was calling employers to see if they would provide on the job training if we provided the pay and the taxes due the government for that employee. One employer asked me "The ones in wheelchairs - do they have any intelligence?" I had to ask myself if I wanted my job and maybe get someone else a job, so I answered sweetly "yes, they do.", even though I'd have loved to A) let him know I was in a wheelchair and b) given an extremely sarcastic answer that would have shed light on his intelligence. I didn't.
The flipside of this of course is that there should be no shame in not being able to work if one is really unable to work. Part of the problem is that people seem to group "the disabled" into one category which leads to things like assuming all wheelchair users must be stupid, or that anyone who isn't visibly disabled must not be disabled at all.

Government systems tend to work in a binary "able to work/not able to work" which just doesn't work well with individuals. It doesn't deal at all well with situations like
- A, who has good days and bad days with her chronic pain, and is able to work maybe three days out of five, but never knows in advance which days those will be (good luck in finding an employer who'll let you take two days out of five off sick) or
- B, who is technically able to be productive but is so antisocial as a result of his disability that he just can't fit into a workplace and be tolerated by others.

Or any number of other situations. The trouble is that "disabled" isn't really a thing in itself, it's a lot of people who differ from "normal" in a wide variety of different ways. So trying to represent "disabled people" in any meaningful way is difficult. It's like trying to represent "ethnic minorities" in any meaningful way - are we talking about Ugandans? Chinese people? Guatemalans? The only thing these people have in common is not being in the majority in country X.
 
Posted by Niteowl (# 15841) on :
 
quote:
Originally posted by Liopleurodon:
The flipside of this of course is that there should be no shame in not being able to work if one is really unable to work.
Funny you should mention this as I am currently struggling with the recent change of being unable to work and I won't be able to again in my lifetime. I've worked since the age of 17 and I'm close to early retirement age so this shouldn't be a bad thing. However, part of the unconscious message I picked up along with the pity for disabled was the message that the lives of those unable to work are worth less than those who work. That attitude has also been made clear in recent political debates and the resentment of some towards those dependent on tax generated dollars to live. I don't believe the lives of those who can't work are worth less than the lives of those who can, but it's depressing to be one of those who can't work and very much aware of the resentment of others.

quote:
Originally posted by Liopleurodon:
Part of the problem is that people seem to group "the disabled" into one category which leads to things like assuming all wheelchair users must be stupid, or that anyone who isn't visibly disabled must not be disabled at all.

Government systems tend to work in a binary "able to work/not able to work" which just doesn't work well with individuals. It doesn't deal at all well with situations like
- A, who has good days and bad days with her chronic pain, and is able to work maybe three days out of five, but never knows in advance which days those will be (good luck in finding an employer who'll let you take two days out of five off sick) or
- B, who is technically able to be productive but is so antisocial as a result of his disability that he just can't fit into a workplace and be tolerated by others.
But for the government there will always be "able to work or totally unable to work". When I was trying to get disability after being told I could not go back to work, the lovely person on the other end of the phone made the comment that if I was talking to her on the phone I had a job skill and could work. It took me a few years to get through to the government that that wasn't enough to get and maintain gainful employment. No money and no health insurance makes just living and keeping living extremely difficult. I blew through my retirement and savings and am grateful for the generosity of my mother when the money ran out. It would be wonderful if accommodations could be made for every person in every circumstance as work is great medicine for the mind/emotions as well as providing much needed income. Sadly, business hasn't gotten there yet. We've made progress with the ability to work from home and accommodations now made in the workplace, but still not enough to allow anyone who wants to to work while taking care of whatever their particular problem is.

quote:
Originally posted by Liopleurodon:
The trouble is that "disabled" isn't really a thing in itself, it's a lot of people who differ from "normal" in a wide variety of different ways. So trying to represent "disabled people" in any meaningful way is difficult. It's like trying to represent "ethnic minorities" in any meaningful way - are we talking about Ugandans? Chinese people? Guatemalans? The only thing these people have in common is not being in the majority in country X.
IMO, there is no such thing as a normal person as we all have issues or problems of one sort or another. As to disabilities we can only speak of specifics when discussion specific people or situations, just as with races.
 
Posted by Jane R (# 331) on :
 
Evangeline:
quote:
I see plenty of people patting themselves on the back saying how good they are because they speak out about social justice via social media/in person or traditional media.
Yes, and it's much easier to do that than to befriend someone with disabilities or do your elderly neighbour's shopping, isn't it? I am planning to go to an Amnesty meeting tomorrow to write letters on behalf of prisoners of conscience, but that will only take an hour of my time, in a nice warm comfortable room, with no physical risk to myself. If I want to use social media to campaign I don't even need to leave the house. Making friends with someone, getting to know them well enough to be able to choose appropriate presents and taking them on outings is much more time-consuming. Most people of working age don't have much spare time. Many will be slightly afraid of people with disabilities, if they don't know any already.

Belle Ringer, if you read to the end of my post you may have noticed that I was pointing out to Marvin that older people may not have a choice about travelling in rush hour, but you make a valid point as well. In some places rush 'hour' may last from 7.30 am to 9.30 am and in London, at least judging by the time when many off-peak tickets are no longer valid, the 'evening' rush hour begins at 3.30. And now I come to think of it, why should people who can't walk as fast as Marvin be excluded from public spaces at times when they might temporarily inconvenience him? Who is he to say that the doddering old lady (who may have parachuted into France for SOE when she was younger) has less right to use the Underground at certain times of day than him?

I don't think we need to call it justice; I think we need to redefine charity. Charity/caritas was supposed to be the highest form of love, which recognises that every human being is a beloved child of God and as such should be treated with dignity and respect.

But the way things are going, you will only be entitled to respect if you can prove to everyone else that you are paying your own way. Financially, that is; giving up your job to care for aging parents or in order to bring up your children doesn't count. Only money matters.
 
Posted by Twilight (# 2832) on :
 
quote:
Originally posted by Jane R:
Yes, and it's much easier to do that than to befriend someone with disabilities or do your elderly neighbour's shopping, isn't it?

I keep seeing this suggestion on this thread and I actually can't think of how to approach a disabled person with the intention of becoming their friend that wouldn't be patronizing. It's been my experience that real friendships happen organically and can rarely be forced. OTOH, offering to get someone's shopping while you're at the store, whether they are disabled or simply busy, is an easy thing to do.
-----------------

I think it's all far more complicated than simply saying "Justice for all!" or "Please give to the charity for "X" although they have jobs and great lives and don't need really need it!"

Just as an example. After laws were passed requiring all the buses to be wheelchair accessible, lots of small towns lost their bus service altogether because the cost of adding the wheelchair lift was too prohibitive. So now all the people who can't drive due to poor vision or mental impairment, (a group much larger than the wheelchair group) have no way to get around.

As for donors giving as freely when their pity sense hasn't been activated as when it has -- I very much doubt that.
 
Posted by Raptor Eye (# 16649) on :
 
quote:
Originally posted by Jane R:
Yes, and it's much easier to do that than to befriend someone with disabilities or do your elderly neighbour's shopping, isn't it? I am planning to go to an Amnesty meeting tomorrow to write letters on behalf of prisoners of conscience, but that will only take an hour of my time, in a nice warm comfortable room, with no physical risk to myself. If I want to use social media to campaign I don't even need to leave the house. Making friends with someone, getting to know them well enough to be able to choose appropriate presents and taking them on outings is much more time-consuming. Most people of working age don't have much spare time. Many will be slightly afraid of people with disabilities, if they don't know any already.

Belle Ringer, if you read to the end of my post you may have noticed that I was pointing out to Marvin that older people may not have a choice about travelling in rush hour, but you make a valid point as well. In some places rush 'hour' may last from 7.30 am to 9.30 am and in London, at least judging by the time when many off-peak tickets are no longer valid, the 'evening' rush hour begins at 3.30. And now I come to think of it, why should people who can't walk as fast as Marvin be excluded from public spaces at times when they might temporarily inconvenience him? Who is he to say that the doddering old lady (who may have parachuted into France for SOE when she was younger) has less right to use the Underground at certain times of day than him?

I don't think we need to call it justice; I think we need to redefine charity. Charity/caritas was supposed to be the highest form of love, which recognises that every human being is a beloved child of God and as such should be treated with dignity and respect.

But the way things are going, you will only be entitled to respect if you can prove to everyone else that you are paying your own way. Financially, that is; giving up your job to care for aging parents or in order to bring up your children doesn't count. Only money matters.
Is the doddering old lady more valuable as a human being if she was a heroine when she was younger?

I agree that it's not a justice issue, unless justice has become an attempt to equalise everyone in every way so that no longer is anyone better off, rather than to treat everyone in a fair way.

Going out of our way to genuinely befriend someone with disabilities is a good way to help us to walk alongside and recognise what will be helpful to that person and what won't. I've probably gained more from a friendship with a lady who has mental health problems than she has.
 
Posted by Jane R (# 331) on :
 
quote:
Is the doddering old lady more valuable as a human being if she was a heroine when she was younger?
I didn't mean to imply that she was, just trying to point out that the doddery old lady wasn't always like that and might actually be an interesting person if you stop thinking of her as an obstacle or encumbrance.

When I wrote it I was thinking of someone who was in her 70s or 80s (not polite to ask a lady's exact age) when I first got to know her and used to be a youth worker in the East End of London. She once threw the Kray twins out of her youth club for causing trouble. I visited her as often as I could when she went into an old people's home, but she was such an interesting person that it was fun. So I can't claim any celestial brownie points for it.
 
Posted by Curiosity killed ... (# 11770) on :
 
There's also a balancing act to make when you're too close. Neighbourly support has to be given with an eye to your own safety.

I have had a number of neighbours with challenging needs - several men with PTSD and alcoholism after serving in the army; currently a man with OCD / bipolar / ASD, oh, yes, and an alcohol problem - he says the first two, I strongly suspect the ASD and I made him admit alcohol as self-medication recently - and a neighbour with other mental health issues. I do watch out for them, have written letters for them or listened and talked through problems, cared for their cats when they are in hospital or away.

Too close and the door bell goes whenever there's a perceived need - 2am, 4am, whenever. Not close enough and the guy is found dead in his flat 4 months after he died (although we did call that one in 3 months earlier and were ignored).

[ 12. October 2012, 14:32: Message edited by: Curiosity killed ... ]
 
Posted by Niteowl (# 15841) on :
 
quote:
Originally posted by Twilight:
After laws were passed requiring all the buses to be wheelchair accessible, lots of small towns lost their bus service altogether because the cost of adding the wheelchair lift was too prohibitive. So now all the people who can't drive due to poor vision or mental impairment, (a group much larger than the wheelchair group) have no way to get around.

A decision that was very short sighted on the part of the community leaders/bus company officials. Many smaller cities/communities that couldn't afford to retrofit their whole bus fleet with lifts could purchase vans equipped with a lift to pick up the disabled for their transport the disabled to their jobs, shopping etc. Charge the passengers a fee for each leg of their trip. At the time the laws were enacted the economy was good and there were generous grants available to cities and counties to either outfit buses or purchase vans with lifts. There aren't as many now, but there are some. The communities that didn't lost out on the generous grants AND the taxes generated by those being transported to and from work or from shopping. This was an incredibly stupid move on their part and the capper is making the disabled the scapegoat for the reason bus service was halted.
[Mad]

My city took advantage of the grants and not only are city buses equipped with lifts, they have a fleet of small buses specifically used by the elderly and disabled. They are charged a set fee for each ride and must make reservations days in advance. The city and the disabled community have each benefited from this. I will also add my city was dragged kicking and screaming into providing any accommodation for disabled when laws started being passed but came in to full compliance many years ago. To be honest, for most of my life it felt like the the non-disabled community as a whole, not individually, treated me as a 2nd class citizen.

ETA: For most of my life I tried to be non-disabled. I'd drag my wheelchair up flights of stairs, made the attempt to do anything and everything my non-disabled friends did - tennis, body surfing, mountain climging, etc. These days, though all of those things are an impossibility to me and I am the standard "crip" stuck in the chair.

[ 12. October 2012, 15:00: Message edited by: Niteowl ]
 
Posted by Twilight (# 2832) on :
 
quote:
Originally posted by Niteowl:

This was an incredibly stupid move on their part and the capper is making the disabled the scapegoat for the reason bus service was halted.
[Mad]

Niteowl, I hope you don't think I blame the disabled for this. I blame the inflexibility of so many of these laws that provide no exceptions for small towns where there is no big bus company at all but, quite likely, just a private individual with an old painted school bus and a daily route he drives himself.

The point I meant to make is just how hard it is to delegate limited funds in a fair manner that benefits the most people.

It would be wonderful if everyone of every age and ability had everything he needed for a comfortable life with freedom of movement and dignified care, but I can't even envision a society where there is enough money for that. We are so far from that, that complaints about Jerry Lewis using sad looking children in his annual telethon seem picky in the extreme to me. If anything about his telethon is going to bother me it would be the fact that once again there is the annual telethon with millions raised, just as once again my church is hosting its annual Relay for Life, cancer drive, and once again the local supermarket is behind the annual March of dimes, etc. while never, ever even as a one time only, is there a drive to raise money for people with schizophrenia or the dozens of other diseases that effect a large percentage of the population, devastate lives, yet never enter public consciousness. I saw a comparison chart once of money given compared to number of people effected and the disparities were enormous with several thousand for each person with certain well advertised diseases vs $14 for each person with schizophrenia. I realize my personal perception is skewed. I hate to think how some parents must feel whose children have really rare diseases.
 
Posted by Niteowl (# 15841) on :
 
quote:
Originally posted by Twilight:
quote:
Originally posted by Niteowl:

This was an incredibly stupid move on their part and the capper is making the disabled the scapegoat for the reason bus service was halted.
[Mad]

Niteowl, I hope you don't think I blame the disabled for this. I blame the inflexibility of so many of these laws that provide no exceptions for small towns where there is no big bus company at all but, quite likely, just a private individual with an old painted school bus and a daily route he drives himself.

The point I meant to make is just how hard it is to delegate limited funds in a fair manner that benefits the most people.

It would be wonderful if everyone of every age and ability had everything he needed for a comfortable life with freedom of movement and dignified care, but I can't even envision a society where there is enough money for that. We are so far from that, that complaints about Jerry Lewis using sad looking children in his annual telethon seem picky in the extreme to me. If anything about his telethon is going to bother me it would be the fact that once again there is the annual telethon with millions raised, just as once again my church is hosting its annual Relay for Life, cancer drive, and once again the local supermarket is behind the annual March of dimes, etc. while never, ever even as a one time only, is there a drive to raise money for people with schizophrenia or the dozens of other diseases that effect a large percentage of the population, devastate lives, yet never enter public consciousness. I saw a comparison chart once of money given compared to number of people effected and the disparities were enormous with several thousand for each person with certain well advertised diseases vs $14 for each person with schizophrenia. I realize my personal perception is skewed. I hate to think how some parents must feel whose children have really rare diseases.
I didn't think you personally blamed the disabled, but I wouldn't put it past the persons responsible in your town as I've known too many in leadership positions who have. There was so much grant money available back then even the most poor one bus town could have afforded a brand new bus with a lift. So you do have to ask, why didn't anyone check to see what was available? The law concerning accessible transportation was one of the few laws that actually came with funding, but one had to expend the effort to find and apply for all grants your town might have been have been eligible for. As for most of the other laws making public buildings accessible there was funding available for those too. My mother got to be quite good at finding those monies and forcing the powers that be to use the funds that were earmarked for ramps, elevators, bathrooms, etc. for those items instead of claiming "there was no need" and using the money for what they wanted. I was hated by the school and other officials in my town because of this. What helped make up for their insults and snubs was the knowledge that others benefited from the accessibility for years afterward. I'm not asking for "comfortable living standards" I'm asking for equality in society and to have the same access to essentials like education, housing, transportation and even shopping for necessities like everyone else. The disabled are entitled to equality.

Just a side note as I know quite a few with MD, what got Jerry Lewis in trouble wasn't his use of sad, pitiable children. It was how he referred to them backstage and talked about them in conversation off camera. The words he used were considered derogatory. Some kids were too young to understand, but many were not and were hurt.
 
Posted by Porridge (# 15405) on :
 
The "Jerry's Kids" campaign is painful on so many levels.

1. Muscular Dystrophy affects adults, too.

A friend with MD is the co-director of an independent living agency. He's 34, uses a motorized wheelchair, wears a suit and tie when driving himself to work, carries a briefcase, lives in his own apartment, dates a woman without any apparent disability, etc. etc.

As he works for a not-for-profit, though, his income is (A) just barely enough for a non-disabled person to live on, and (B) exceeds by a considerable amount the income limit that would enable him to cover substantial expenses associated with his disability -- the motorized wheelchair, the PA who helps him with personal needs mornings and evenings, etc.

He doesn't particularly want charity; he's a capable, intelligent professional. Neither is he thrilled that his disability is portrayed every Labor Day weekend as something affecting only little kids who despair of ever living any kind of normal life.

2. MD is no longer quite as devastating as it once was.

My friend does face a shorter-then-average life span, and knows this. However, this is (A) not a foregone conclusion while research continues, and (B) the real difference between him and anybody is that he's had fair warning, and most of us do not.

What would help my friend is a new take on disability rules and regulations.

First, recognize that many people with disabilities can and do work, but may not be able to work full-time, or may not be able to work at jobs that pay a living wage. (All my clients with cognitice impairments who work have "food-&-filth" jobs.) Stop making disability payments an active disincentive to working by withdrawing every scrap of support the minute somebody lands a job paying minimum wage.


Recognize that many disabilities "fluctuate" -- MS, bipolar, schizophrenia, etc. -- that is, sometimes people can manage a job for a while, and then they have periods where they can't. Don't toss these folks off the system the minute they land work; create a "holding pattern" or some system of abeyance. But also make sure they have some reasonably prompt way of getting back on the system when they get canned.

And for heaven's sake, have the same multiple-agency group write the rules and regs for SSDI, Voc Rehab, public housing, etc. etc. so that meeting eligibility for one needed program doesn't automatically eliminate you from everything else. Having a really expensive specially-equipped van for a driver with disabilities shouldn't knock the driver out of the running for food stamps when the driver has been laid off.
 
Posted by PeteC (# 10422) on :
 
That was passionate and I agree with everything. In fairness to Jerry's Kids, though, when that Telethon started the life expectancy of the boys was mid-late teens, for the most part. I think that Lewis' telethon helped raise money to further research that has helped extend life. The image could use a lot of updating, but the truth of the matter is that kids sell better than adults.

I point out that I have been a Timmy in Easter Seals campaigns when I was a kid. I relate to the angst of your friend, and empathise.
 
Posted by Niteowl (# 15841) on :
 
Excellent post Porridge. [Overused]
 
Posted by Squirrel (# 3040) on :
 
Yes, Porridge, that was very good. I know of people like your friend- people with severe disabilities who manage, through sheer human guts, to avoid the pre-ordained role that society expects such folks to play- that of Recipient of Charity. People who are willing to go along with that role can get guaranteed incomes, subsidized housing, free medical care- plus a host of other services from a large network of public and private agencies. Yes, the services may not be of great quality- but they exist. Those brave souls who want to be independent usually have to forego such aid and handle things on their own.

As for "Jerry's Kids" (barf!), I am aware that MDA goes some good work in terms of research and the like. But its fund-raising techniques degrade us. I say "us" because I have a disability myself. The telethons evoke pity and an image of persons with disabilities as dependent. And that makes things much harder for those of us who have to face discrimination.

To those who who still think Jerry is such a great guy, I suggest that they get in touch with a disability rights organization and ask their people what they think of him. Be prepared for some strong language.
 
Posted by Bullfrog. (# 11014) on :
 
quote:
Originally posted by Squirrel:
This "admiration" that so many people feel towards those of us in the helping professions does not motive our society to provide us with decent pay or status. Nowadays when people tell me that they "admire" what I'm doing I tell them to write their politicians and urge them to give me a pay raise.
Someone once said something like "Oh, I couldn't do what you do for a living." My response was "and some days, I don't think that I can either."

And yeah, I think the state owes my employer a ridiculous amount of money in promises and IOU's.

Far as advertising, I've noticed, with my own mixed feelings, they tend to show the higher functioning people in active capacities. As someone who works at the lower functioning end, I sometimes feel somewhat slighted, but I think you're right that it helps to see folks in active roles doing things. Mind, for someone with limited capacity, highlighting what they can do in a way brings attention to their limitations, but there's a more hopeful spin to the message, as in "see what we can do given support" instead of "we are helpless without support." Kind of two sides of the same coin, but it's something.
 
Posted by Squirrel (# 3040) on :
 
Indeed. The charities want to show that those poor, helpless disabled people out there can be helped if only we call the toll-free number on our televisions and pledge money. But they don't want to show the really low-functioning clients, the ones whose appearances may shock or offend the audience's delicate senses. Besides, few people will want to donate to provide basic, custodial care for the truly helpless.
 


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