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.