Charity my fickle friend: a poem

Charity, my fickle friend
What business have you here?
Begone from me
O Charity
So full of fear you be
You offer help with puppet strings
That strangle and constrain

Your presence brings
Naught but pain
Your chiding
Naught but shame
The "could have" "should have" chorus sung
Is a demeaning refrain

Charity, you chase me down
No matter where I go
Awaiting one wrong twist of fate
A circumstance unknown
Tis a most annoying game
Take note- you play alone.

Right now I know three people who have disabilities - who work full time - who are experiencing difficulties continuing to work because of the high cost of the items we require to work.

It is sad indeed when the system encourages us or forces us to rely on charity despite our attempts to stay independent. It is both demoralizing and dehumanizing, a source of anger and frustration.

Some may think that the charity model of services, which has been around for a long time, serves the needs of the disabled community. I disagree. It is not only an erratic master, but it plays the role of unduly regulating our lives, forcing us to comply with often antiquated rules created for people with disabilities who do not work.

Why are the statistics for unemployment among people with disabilities so high? Lack of services, equipment, job opportunities, attitudes among employers - I could go on and on. But it's also the charity model of services that's at fault. For example, accessible transportation services are run in some ways like a yellow school bus. They work for some, but not for others. You can use them if you can plan ahead a number of days, but they don't work for spontaneous transportation.

This may seem like an unreasonable request to have, but think about this: how do you run a business, for example, if you have to plan your transportation ahead by several days? In a day and age where more of us with disabilities have to be creative to remain employed, it's a death knell to be so constrained. It works for going to the mall or the movies or "outings", which is what is often envisioned in the charity model of services. There are also limitations on where you can go, how far you can go, etc. This results in limits on participation in community activities, memberships in organizations as well as social activities.

In a consumer oriented model of services, the services are tailored to the actual needs of the consumer. This bypasses the often stringent rules that don't fit the consumer's situation. For example, the personal assistant services I receive can be tailored to my needs because they are consumer based. This allows me to work.

But far too many services for people with disabilities lag behind and are run by the charity model. This includes transportation. The high cost of vehicles is a bar to many. Taxis are not yet accessible in most areas. And although bus lifts and bus routes can be used by some, this is not true for everyone, depending on the level of disability and the need to pay for attendant care to do so.

All of these issues present a complex service delivery problem when addressing the needs of a continuously more diverse disability community. Yet not addressing them can, and will, exacerbate the problem by forcing more people with disabilities out of the work force and back where we began years ago - at the mercy of charity.

Helping is not a black and white thing

For those meals I need when my aide isn't around, we've worked out a system where Meredith sets up my food so that I can get "at it" without too much ado.

However, my cat seems to think it's his job to help when she's not around. This may sound like a heartwarming, Lassie kind of thing, but actually it's really more like a Laurel and Hardy film.

This morning I grabbed my quad reacher to open the refrigerator to pull out a breakfast item and my cat Buddy decided to help. He stood next to the shelf and began to work his paws near it, as if he could grab it. Unfortunately Buddy has no opposable thumbs, just big fluffy white paws, so all he managed to do was knock the item off the shelf as I said "It's ok, Buddy. I got it. Leave it alone -oops."

Buddy walked over to the food, sniffed it, then jumped into my lap crying. I had to console him because, of course, like any helper, it's important to give strokes. So I pet him and told him I most certainly did appreciate the assistance. Once he calmed down he jumped into his usual position to look out the window. 

I   rolled out to the living room to  drink my coffee and blog.

I read the NY Times. There was an article about a 67 year old psychologist who has devoted her practice to helping people with disabilities (including running an online group for parents of kids who are blind) who was viciously attacked recently resulting in serious injuries and now faces financial issues due to delays in crime victim compensation.  At the end of the article, she was asked if she could still listen to other peoples' problems, considering the magnitude of her own and she said she could because she realized that each person's problems were his/her own. 

She added that she hoped that those people would never have the bigger problems to put their own into context.

And all of this got me thinking about the helper dynamics that we all face every day, whether we are disabled or not. We all  make choices about who to help, asking for help, etc. Some spend their lives in the helper role, while others receive more help. Some who receive help help others back.  Having been on both ends, I find the helper role much more comfortable. As I'm sure this woman probably does.

Her days of helping are not over. In this article, she is still teaching people through her words, spoken in pain I'm sure.  Because, you see, helping is not a black and white thing. 

 For some reason we put people in roles. We put people with disabilities in a lot of roles around the issue of helping.  But we do it to everyone. This woman has helped folks her whole life, but is being treated by the crime victim compensation office as a charity case.  Those of us with disabilities know what that's like, huh? 

Actually in a community that's healthy, it would just be natural to extend a hand to her which you can do by clicking here -without casting her in any role. The crime victim compensation check would come in the mail, not be withheld under a mound of paperwork with a smug employee making a statement that payment depends on the cooperation of the victim. Oh please. Read her injuries and her efforts to get payment and tell me how much someone in her shoes is supposed to do.  Let's hope the folks who run that office never find themselves in her position either. 

Yes, her words teach. 

[visual description: A photo of a tuxedo cat, black face, white ruff, that looks like my cat Buddy.]

Protest Pity Blogswarm

The disability community speaks out against the use of pity in the MDA Telethon (click above).

A prayer for Jerry - and all of us

As blogger Wheelie Catholic, my first response was to pray for Jerry Lewis and all of us when I heard bloggers were speaking out against the annual MDA Labor Day Telethon. I join them. And yes, I know the telethon has helped many people over the years. I have no problem with raising money for MDA. My issue is how it's being done. Despite the ADA and advances we've made because of it, the telethon continues to portray people with disabilities as objects of pity. In this day and age, why is the poster child approach still being used?

Public perception about those of us with disabilities is beginning to change as we go out into the world more frequently. Americans see us in restaurants, movie theaters and other public places. We attend college in higher numbers and are continuing efforts to improve our representation in the job market. Our mobility—if we have the means—is at an all time high. We have better equipment, better care and live longer and healthier lives. Much of this is related to affording all that’s involved. Many Americans with disabilities, adults and children alike, may have the civil rights, but not the means to live fully with a disability. We can't afford what we need to do this.

Raising money to help disabled kids get the assistive devices they need and providing for their families is a worthy cause. I know the high cost of living with a disability because I live with quadriplegia. My sister and her family struggle financially as they raise a child with CP.

The charity model is not the solution. Why on earth would we teach children with disabilities that begging is the answer? Is that part of their IEP program? I don't think so. While it’s easier to fork over a check once a year than to commit to a community effort, let’s change our social programs so people with disabilities can attain a certain quality of life with dignity.

This is why I’m saying a prayer for Jerry Lewis — and for all of us. It's time to address the real problems and make some real changes. Let's grow up and discard the poster child model and start teaching all children that people with disabilities are not to be pitied, but respected.

If I were disabled, I'd - play checkers?

I once saw a cartoon. There was an amputee, without arms or legs, in a cart in front of a building. A man walking by had put a dollar bill in the amputee's mouth and he was saying "And I don't even get a thank you?"

This image reminded me of the confusion that occurs when well meaning people attempt "helping" people with disabilities before even asking if they want help - or how they want help. Over the years I've had people who showed up to help - only to assume things and then proceed to "help" in various ways that were not helpful.

If anyone is thinking that "the charity case" model no longer exists, let me assure you it's alive and well. It's rampant among volunteers and even in many social service agencies (other than those who have worked really hard to switch over to a "consumer directed model"). While there are exceptions to the charity case model, I've run into it many times over the years. It's a frustrating and often demeaning experience, one that I steer away from at all costs now that I can spot it.

The problem with the charity model is that it creates a trickle down system. Basically, the giver defines what he/she gives and the recipient takes it. Like the little old lady who is taken across the wrong street by a well meaning Boy Scout, the recipient often doesn't feel grateful because what is given may be inappropriate or unwanted - or even put him into a worse position than before. But the recipient is supposed to act grateful anyhow because the giver meant well.

When applied over and over again to the life of a person who is disabled and relying on help, this charity model is disastrous. I've seen it myself where volunteers come in and decide I need two hours of companionship or a game of checkers when I have work due the next day and, if I go along with this, I'll be up until 2 a.m. finishing what I have to do. I can have a pile of papers that need numbering - which would be a great way to be helped, but under the charity model, it's deemed inappropriate for me to pick a task. I've been told so many times.

"These people are giving up their time to come over and keep you company and you won't even play checkers with them?" I've been told.

Yeah, how ungrateful can I be?

In no way at no time do any of these people even see me as a person. I'm a "project". Even though I'd much prefer we spend the time doing other things - maybe grooming my fluffy cat - and things that I can't do because of my hand impairment , that never seems to work out. I know it's not as much fun as checkers, but we can talk while we do those things too.

As you've probably guessed, I no longer participate in programs that use the charity model. I know most disabled people don't. What is really help is when someone asks what I need help with. Of course, they're free to decline helping if they don't want to - and many do. They want to be helpful in their way, doing what they (I suppose) would want done if they were (which they're not) disabled.

Playing checkers.