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One Woman's Story of Struggle and Tragedy in George Bush's America
Published on Tuesday, July 13, 2004 by the Niagara Falls Reporter
One Woman's Story of Struggle and Tragedy in George Bush's America
by Bill Gallagher
 

"The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in twilight of life, the elderly; and those in the shadows of life, the sick, the needy and the handicapped." -- Hubert H. Humphrey (1911-1978).

The "compassionate conservatism" of the Bush administration clearly fails Humphrey's test of public policies that help those most vulnerable and in the greatest need.

Instead, we have a government that shines its attention on the wealthiest Americans and powerful corporations, especially military contractors and polluting energy industries.

Those interests bask in the sunshine of unprecedented tax breaks, no-bid contracts and relaxed and unenforced environmental regulations that make the air dirtier and people, especially children, who breathe it sicker.

While George W. Bush feeds us a steady diet of fear to boost his political fortunes and divert our attention from his failed policies, many Americans struggle to put food on their tables, find jobs and get decent medical care.

Actual job growth last month was half of what the White House projected. As Princeton University economist and New York Times columnist Paul Krugman reminds us, a single statistic tells the story of the Bush record on job creation: "It's the percentage of adults who have jobs," Krugman writes. "When Mr. Bush took office, that number stood at 64.4 ... in June, the number was 62.3."

Forget Hubert Humphrey, Bush's inspiration for government is Herbert Hoover -- fewer jobs and benefits for American workers, more profits for corporations and untaxed dividends for the already well-off. What's good for General Motors and the country club set is what this country needs. That's the road to sustained economic growth.

Millions of unemployed and underemployed people are not buying that. What economic growth there is has not helped them. So where is the growth going? We turn again to Dr. Krugman.

"After-tax corporate profits as a share of GDP have reached a level not seen since 1929," he notes.

Forty million Americans are without health insurance. Older Americans struggle to make Medicare meet their health care needs, as the administration-favored HMOs rake in huge fees for their questionable services.

"But wait," the Bushites will say to older Americans, "we gave you a prescription drug plan." What they really got is an unfunded new entitlement that will cost billions and mostly benefit the big pharmaceutical companies.

While grandpa and grandma may get a little break on their pills, the grandkids will pay the bill with interest, along with the other unconscionable debt George W. Bush is passing off to the next generation.

The administration -- whose motto is "When in doubt, deceive" -- is caught red-handed withholding the true cost of the prescription program from Congress and the public. The Office of Inspector General for the Department of Health and Human Services confirmed allegations that Tom Scully, Bush's former Medicare Administrator, leaned on actuaries in his office to keep the lid on the true cost of the program. I guess we shouldn't be surprised that the folks who lied about the reasons for war would do the same to get the OK for an election-year bone to toss at older voters.

The plight of Irene Judd and her family underscores how those in the shadows of life often struggle so hard and get so little help, while our government ignores them and loots the Treasury to give more tax breaks to the richest among us.

Irene does her best, and what she has achieved is an example of heroic determination and a model for all of us. But now she's in a crisis, as I learned at a recent visit to her home in Lapeer, Mich., about 60 miles north of Detroit.

"I'm very, very sad and unhappy because I'm taking away from my sons, their home. I mean it was my fault. If it was just me, I'd say, no problem. But these kids here don't want to lose their home," she says.

Irene's devotion to her boys is extraordinary and it centers on the home they've lived in since 1966.

"If they lose their home, my sister will be crushed," says Darlene Jennings. "She has no other life. I do believe the reason the boys have lived so long is the care they've received. They will not live very long if they're taken from their home."

Irene Judd's boys, as she always calls them, are actually approaching middle age. Kevin is 41, Kurtis 38 and Kenyon 37. Kevin's twin, Kalvin, died six years ago and that loss has been an emotional and physical drain on Irene, added to her financial burdens and the foreclosure on her home.

Except for Kalvin, all Irene's boys were born with Pelizaeus-Merzbacher disease (PMD), an extremely rare genetic disorder that causes a degeneration of the central nervous system. Mothers carry the gene and only males get the disease.

The mutation affects the myelin sheath -- the fatty covering that wraps around and protects the nerve fibers in the brain. PMD is progressive. Coordination, motor abilities and intellectual function deteriorate. The boys are in wheelchairs and require considerable care, but Irene has provided that at her home instead of placing them in institutional care.

"I don't know where we would go. I don't know what we would do. I'd be lost. This is the only home they've ever known," she says sadly.

Irene's sister Darlene adds, "They survived because of the home, their mother and the love that's here."

When Kevin and Kalvin were 6 months old, Irene noticed Kevin's coordination was off, but doctors couldn't figure out what was wrong. Kurtis displayed similar symptoms and Irene was pregnant with Kenyon when doctors finally were able to diagnose the disorder as PMD.

"People are always asking why did she have three children with such a terrible disease," Darlene says. "But she wouldn't have gotten pregnant again if she had known."

Shortly after Kenyon was born, their father left Lapeer and ran off to Texas with another woman. He has never helped Irene.

But she kept going, caring for her boys. Irene received about $1,600 a month in Social Security disability payments for the three boys and she worked two jobs -- preparing food trays in a deli and working a paper route. She renovated the home with ramps and wide hallways so the boys could maneuver their wheelchairs.

Kalvin helped his mother care for his brothers and Irene invited a homeless man to live with the family. "Old Man Bill" was a great help and his stay lasted for 20 years, until he died.

Kalvin got married and had four kids. When his marriage broke up, he got custody of the children, and his mother invited them to move back to the family home. They did.

Irene took out a second mortgage to add on two bedrooms and make some improvements for the boys. Kalvin worked and helped pay for the arrangement, and his brothers worked in sheltered workshops, bringing home a few bucks.

But then Kalvin became seriously ill from a non-alcohol related liver disease and died. Irene was crushed, but kept working and caring for her boys and four grandchildren.

Then Kalvin's ex-wife regained custody of the children and took them, along with their Social Security benefits. Irene still had to pay off the new mortgage.

Her health deteriorated. She is a severe diabetic and a leg ulcer has forced her into a wheelchair. She could no longer work and fell behind on the mortgage payments. The state had paid her $600 a month for home care for the boys. The government would pay a nursing home much more each day for the care. But even that was cut off. Irene was hospitalized and the mortgage company foreclosed on her home.

People in the Lapeer area are working to help Irene keep her home.

"We need to concentrate on our own -- the poor, the old, the disabled," says Michael Lisiewski, who's taken up the cause. He doesn't look the part of the passionate social activist he is. Michael wears blue jeans, has a sharp crew cut and his muscular tattooed arms bulge from his tank top. The tool-and-die maker heard about Irene's troubles and he's angry.

"It's a crime in this day and age, where there is so much wealth, that this can happen," Michael says. "We can't forget them. We can't leave them in the shadows and just let them fade out and be ignored."

Michael's giving proceeds from a CD his band cut to Irene.

The founder of the PMD Foundation says families dealing with the disease get "very little, if any, help from the government."

Mike Laprocido, whose brother and nephew have the disease, says PMD is so rare it gets little attention and he's working to raise money for research. He says Irene Judd's "horrible situation" wouldn't happen if her sons were afflicted with better-known neurological disorders.

Irene is losing sleep over the fate of her boys and would like to pull herself out of the mess.

"Well, I'm not used to taking charity. I'm not used to having people give. I appreciate it. It's just hard, ya know, that I have to go to someone else for help instead of doing it myself."

Our government leaders may be insensitive to the needs of Irene and many others, but the American people remain the most generous on earth. Maybe a few of you could use a little of the Bush tax cut to give Irene and her boys a hand.

Send donations to:

Irene Judd Fund
c/o Lapeer County Bank and Trust Main Office
P.O. Box 250
Lapeer, Michigan 48446
Or call (810) 743-2424

Bill Gallagher, a Peabody Award winner, is a former Niagara Falls city councilman who now covers Detroit for Fox2 News.

©2004 The Niagara Falls Reporter

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