A Beautiful Niece

June 28, 2011

The slender blue eye girl
Ran to the blue van as
Dusk fell.
A harvest moon hung in the sky.
She opened the side door and
Hopped in the van giggling.
She screamed and laughed standing
Next to Uncle Steve.
“Did you have a good time at the game?”
He smiled as drool dripped on
His Packers shirt.
“Yeah.  We won!”
“That’s good.”
Her mother called her from the porch.
“I love you, Uncle Steve.”
She laughed and then darted out of
The van.
He watched her run.
She tossed her long blonde hair about
She then turned waving at her Uncle.

Since there is a very good chance Walkers budget will be passed this week, I thought I would take the time to remind readers what this means for the disabled. Here is an article I wrote that was published in the Wisconsin State Journal on March 9, 2011.

Two days before Gov. Scott Walker won election, a gigantic splash rippled across the lagoon of Lake Mendota. Bystanders ran to the lagoon, calling 911 on their cell phones. Seconds later fire trucks and emergency vehicles soared across Northport Drive, sirens blaring. As local television reporters appeared on the scene, the electric wheelchair dangled from the hook and ladder. Then divers brought up the dead man’s body.

The usual questions were asked: Why was he alone? Where was his care attendant? Then people forgot about the disabled man – it was just another tragic statistic that the news media and disabled organizations tried to hide from the public, especially the disabled community.

But this suicide demands attention to keep another tragedy from happening. My nonverbal friend’s suicide was due in part to the bad assisted care he received. Care workers didn’t come on time or at all, leaving him lying in a urine-soaked bed. One attendant fed him four grapes at a time, almost choking him. Some call for a job interview, then come late or don’t even show up.

Care workers only earn around $10 an hour, barely enough money to support themselves, and they want benefits such as dental and health insurance. Walker’s proposed budget cuts to Medicaid will reduce the quality of assisted care for the disabled. Waiting lists to receive independent living will become longer. The disabled will have to live in institutions, costing Wisconsin residents millions of taxpayers’ dollars.

Severely physically disabled people, many of whom are college-educated and talented, shouldn’t be put in institutions. The state made a promise to its disabled citizens to provide good quality assisted care.

After attending my friend’s memorial service, I promised my friends and family that I’d never commit suicide. The funeral was heartbreaking and made me want to live even more. My greatest fear is ending up in an institution and seeing my writing career die. Being institutionalized isn’t living – it would waste the unique talents I have worked for years to master.

My friend’s frustrations are the same issues I deal with each day. Social Security is too high for me to be eligible for assisted care, so I must work. But according to the state I’m unemployable, and people won’t hire or pay me. I can’t make more than $900 a year or I will lose my assisted care.

I wait years for Medicaid to approve specialized equipment like an electric wheelchair. I can’t live where I want. Weeks and sometimes months go by without me leaving home. The system allows me 14 hours a week to go places with a care attendant, but I have only used about 10 hours from this program in the last two years because, as an author, I’m too busy writing and promoting my books.

Loneliness eats away at my heart, but I continue to write for those such as my disabled friend who don’t have a voice. Care workers come and go, staying on average about four months. Then I have to hire, train and trust a new person to help me with my personal cares. I hope one day to be a known author, but I need reliable, educated, caring attendants who are well paid and don’t view care work as the bottom rung of the career ladder.

These are tough economic times, but cutting Medicaid isn’t an answer. Putting the disabled in institutions would be a disgrace. Walker would never want to attend a funeral for a talented, educated, physically disabled person, caused by suicide. It’s the hardest thing to witness, especially when it’s avoidable.

Don’t cut Medicaid – lives are at stake!