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Disabled woman fights to stay in home, maintain dignity

Tami Weber's power wheel chair allows her to move around her home on Bartosh Lane. <i>Gretta Stark photo</i>

Tami Weber, 1164 Bartosh Lane, can only move her hands, but with persistence and ingenuity, there are a lot of things she can do with just her hands.

Weber once needed to take an inhaler, but as she can't move her arms, she couldn't bring the inhaler to her mouth to take it. Weber and her doctor came up with a creative solution.

"It was right around the time of the state fair," said Weber, "and everything is on a stick at the state fair. So he says 'inhaler on a stick.' So sure enough, I took a ruler, and I taped the inhaler to the stick. Worked great."

Weber has a rare disease caused by a defect in her DNA. Weber's body processes certain types of food wrong, destroying her nerves and muscles in the process as well as causing obesity.

What makes Weber's case so rare is that this disease usually strikes young boys who don't usually make it to their 20th birthday.

Weber showed symptoms of the disease as a child. Weber said her doctors at the Mayo Clinic hadn't seen a case of adult-onset of this disease before.

The disease is progressive. Weber, now 44, was in her first wheel chair at age 21.

She is now functionally quadriplegic, which means she can feel everything but she can't move her arms or legs, only her hands.

Personal care workers visit Weber three times a day to help Weber with daily living.

They assist her with things she cannot do, like transferring from bed to her chair, and meals.

She uses a medical transport system, Handi-Lift, to get to her various doctors' appointments at the River Falls Medical Clinic and the Mayo Clinic and her weekly physical therapy sessions at Avanti Clinic in Hudson.

Weber pays for her personal care workers, doctors' visits, physical therapy, and even the specialized transport vans with Medicare and Medicaid.

But with Medicaid and Medicare facing serious cuts, so is Weber's future. Without Medicaid and Medicare, Weber said she would not be able to afford her care workers, the medical transportation system she uses, or any of her doctors' visits or physical therapy.

Weber said she fears she might end up in a nursing home.

"I did nothing to be in this situation," said Weber. "I'd rather not be in this situation, but for whatever reason, this is the lot in life that God gave me. But that doesn't mean that I'm going to sit back and let them take away my independence, and my home."

Weber said staying in her own home costs the state less than it would cost them to keep her in a nursing home.

Weber said she has become a strong advocate of disabled rights over the past few years. She attends a yearly conference for disabled people, and she has spoken at the conference the last three years in a row.

She especially advocates disabled people being allowed to stay in their own homes.

"We're being asked to give up our human dignity," said Weber, "and we're not asking for a lot. We're asking to live in our homes rather than a nursing home."

Weber also speaks to elementary school students about living with a disability and how to talk to someone with a disability. Weber said she tells children that everyone has different abilities.

"Some people are really fast runners," said Weber. "Some people are really good at math. Some people might not be able to do all that, but they just have a great heart and are very loving and will make really good friends."

Weber said she tries to remain an active member of the community to the best of her ability.

She is a member of the Community Health Partnership Board. She has sung in her church choir and helped with youth groups in the past.

While she can't make it to church as often as she would like these days, Weber said she enjoys simply going grocery shopping with her care workers, just to be out in the community.

Weber also exercises her brain as much as possible.

"I try to stay very sharp-minded," said Weber, "I'm a political and sports junkie. I spend a lot of time reading."

Weber is an avid follower of politics. She often enjoys watching political news shows before bed. She is particularly careful in following news about legislation that affects disabled people like her.

"Wisconsin's motto is 'Forward,'" said Weber. "I think everything that's just been passed with Governor Walker, our new motto should be 'Wisconsin backwards.'"

Weber said her greatest fear is that the new legislation affecting Medicare may force her into a nursing home.

"Sixty-seventy years ago, people with disabilities automatically lived in a group home or institution," said Weber.

"Well, as I like to joke, you guys let us out, and we're not going back."

Gretta Stark

Gretta Stark has been a reporter for the River Falls Journal since July of 2013. She previously worked as a reporter for the New Richmond News from June 2012 to July 2013. She holds a BA in Print and Electronic Media from Wartburg College.

(715) 426-1048