SOUTH PORTLAND — Renee Berry-Huffman knew from the start that her day wouldn’t go as planned.
With a meeting at Portland City Hall and a medical appointment on her calendar, she had already arranged for rides to get her where she needed to go on time. But when she called to confirm her first ride, she was told the wheelchair-accessible bus wouldn’t pick her up until 10 a.m. – the same time her meeting in Portland was slated to start.
It was an inconvenience that is common – and frustrating – for an independent-minded woman who, because of a disability, finds herself depending on others to get where she needs to go.
“Sometimes there’s anger, frustration and tears,” Berry-Huffman said.
But not on this day.
Instead, Berry-Huffman, 52, waited patiently in her South Portland apartment, her service dog’s head resting on her knee. She hated to miss the start of the meeting with members and supporters of the Portland Disability Advisory Committee, but she said she decided a long time ago not to be dragged down by the frustration that goes along with depending on others for rides.
“Nothing is ever etched in stone. Everything can change in a moment’s notice,” she said.
Berry-Huffman, a human rights activist, was diagnosed with multiple sclerosis 18 years ago and has been using a power wheelchair since 2009. She is now active with the Portland Disability Advisory Committee and encourages others with disabilities to advocate for themselves.
While she waited for the Regional Transportation Program bus to pick her up, she called a committee member to ask him to get the meeting started without her.
“You’ll see me when I come whizzing in,” she said.
She was a half-hour late to the meeting, getting to the table just in time to join a conversation with city employees about public transportation, a common source of frustration for many people with disabilities in Portland. The Metro buses can be unreliable and riders with disabilities say they often encounter people who taunt them.
After the meeting, Renee Berry-Huffman sat in the sun outside of Portland City Hall, a scarf around her head and a blanket over her legs to block the chill of the wind. Just a few blocks away, the city’s Old Port is more or less inaccessible to her, she said. The cobblestones are a nightmare for her wheelchair and many businesses are hard, or impossible, to get into.
The bus was supposed to pick her up at 12:15 p.m. When it’s 10 minutes late, she calls RTP to make sure someone is coming. The operator puts her on hold.
“I’ve heard this song so many times I almost like it,” she says of the elevator music piping out of her phone speaker.
She now has five minutes to get home to meet her next ride, an ambulance paid for by MaineCare that will bring her back into Portland for a doctor’s appointment at 1 p.m. The MaineCare ride is only authorized to pick her up at home, even though her meeting was only a few blocks from the medical building.
Berry-Huffman is relieved her next ride is still waiting when she finally gets home at 1 p.m., but almost immediately runs into another delay when her wheelchair stops working while on the lift into the ambulance. She uses her arms – especially strong from her days as a shot putter, she says – to pull herself inside before the wheelchair finally starts working again.
“Oh my God, this is not what I planned for today,” she said.
By the time Berry-Huffman gets back into Portland, out of the ambulance, over a bumpy sidewalk and into the lobby, she’s 40 minutes late for her medical appointment and is told she has to reschedule. The receptionist apologizes, but Berry-Huffman insists it’s not her fault.
This would have been Berry-Huffman’s first visit with a new doctor after being dropped as a patient by a previous provider because of late rides and missed appointments.
“It happens more than you want to know,” she said.
Berry-Huffman said she could focus on the frustration that comes with these situations, but instead prefers to channel her energy into advocating for equal treatment and respect for people with disabilities.
“I can do one of two things: I can be upset and hold onto the negativity or I can let it go and keep going,” she said. “A disability humbles you because it truly makes you respect things that are out of your control.”