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Advocate for disabled needs new wheels

Akron Beacon Journal - 1/2/2020

First the wheels stopped.

Then they came off.

The end of 2019 didn't go as Akron resident Alicia Hopkins had hoped.

And she's not sure about this year.

Hopkins, an artist, writer and advocate for people with disabilities, said this week that her motorized wheelchair broke down Saturday afternoon and she's been confined to her North Howard Street apartment with little hope of a quick solution.

"I was going to an event in my community, and my chair decided it was going to stop working," Hopkins said.

Normally, she'd use her backup, a manual wheelchair, but that's little help. She's able to use it in her apartment, but a wheel keeps dislodging, putting her at risk of toppling.

Which is exactly what happened Monday night.

Hopkins ended up on the floor for two hours before she could get help from Akron paramedics.

The artist-advocate was profiled in Sunday's Beacon Journal as an Unsung Hero for disabled individuals. She knows from experience how difficult daily life can be for those with disabilities.

She has had three strokes, the first coming when she was 20. By the time she was 27, she was in a wheelchair. She's 34 now and spending time she'd use to help others trying to get help for herself.

Hopkins said she's working the phones to try to get a new motorized wheelchair.

"My situation is that Medicare doesn't want to pay for the chair," she said. "They'd rather pay for something that wouldn't meet my needs and breaks quicker."

A new chair of the type she needs is about $13,000, and that's well beyond her means.

But she's hoping a serendipitous connection with a state lawmaker could help bring attention to the problem, common among people who must use wheelchairs for mobility.

When her wheelchair broke down on Saturday, Hopkins said, state Rep. Emilia Sykes, D-Akron, came out of nowhere to help.

"She was walking down the street," Hopkins said. "It was out of the blue she showed up and offered to help me."

Hopkins said Sykes got a bus to take her and her broken wheelchair home.

"She's a hero because I wouldn't have known what to do," Hopkins said. "She's a true hero to me."

Sykes, who is Ohio House minority leader, said she was arriving home when she saw someone in distress.

"I was turning into the driveway and I saw a woman on the hill struggling in a wheelchair," Sykes said Tuesday.

She recognized it was Hopkins, whom she knew from her advocacy for disabled individuals. Sykes was able to help Hopkins get to her meeting, and then helped arrange transportation home.

"I was really glad I was in the right place at the right time," Sykes said.

Since then, Hopkins hasn't been out of her apartment. She had a medical appointment Tuesday, but had to cancel because the backup wheelchair, a manual one, failed her.

Even staying at home isn't a safe bet, Hopkins said.

"On a daily basis, I have multiple systems in my body shutting down," she said. "[I] can't digest food very well. My body can't process food right."

She's approved to receive 55 hours a week from a caregiver, but can only schedule 25 hours because there's a shortage of workers.

"I have been advocating for the caregiver issue," Hopkins said. "They can't get nurses; they can't get aides."

Nancy Hendler from Gainesville, Florida., became friends with Hopkins through Facebook and talks to her every day. She said Hopkins is averse to asking for help, preferring to do what she can on her own.

Hendler said her friend's wheelchair had been breaking down intermittently before it quit for good.

"She never knew when she went out if she could get home," said Hendler, who also is disabled.

Hopkins tries to remain philosophical about her quandary.

"You can either let your problems get you down or you can fight back," she said.

Hendler said Hopkins deserves to get a chair and disabled people deserve to be treated better.

"Being disabled is no picnic, and you get treated like garbage," she said.

Alan Ashworth can be reached at 330-996-3859 or emailed at aashworth@thebeaconjournal.com. Follow him on Twitter at @newsalanbeaconj.

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