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Outdoor enthusiasts who have disabilities: Being active outside 'changes everything'

Being active outside — biking, hiking or paddling — is a key part of life for many in western Massachusetts. For some people who have disabilities, outdoor recreation can be challenging, but also life-changing.

That's true for 50 year-old Amy Sugihara.

"I hiked a bunch. I used to rock climb and kayak. And white water rafting," she said.

Today she still kayaks and gets out on trails. And even plays pickleball.

On a recent day at Look Park in Northampton, she headed toward a court in her wheelchair, pushing a second chair — called a court chair — ahead of her. It’s a bit of a maneuver to get in.

Pickleball player Amy Sugihara pushes a court chair to a pickleball court at Look Park in Northampton, Massachusetts. The wheels on the court chair are cambered to give speed, agility and control on the court.
Nancy Eve Cohen
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NEPM
Pickleball player Amy Sugihara pushes a court chair to a pickleball court at Look Park in Northampton, Massachusetts. The wheels on the court chair are cambered to give speed, agility and control on the court.

"I put the brakes on my wheelchair," she said. "So that I can kind of push up and hold a handle on the court chair, move my legs a bit, and fall into the court chair."

Then she uses her hands to lift each leg, one at a time, onto a foot rest on the court chair.

The effort is worth it to her. The chair has wheels that are cambered to give agility, speed and control on the court.

As part of a game organized by the group All Out Adventures, she played against staff and volunteers without disabilities. A couple of newcomers in chairs are playing on another court.

"It is super fun to be back on a court," said Sugihara, who played tennis in high school and college.

Mike Brezsnyak, a volunteer with All Out Adventures, plays pickleball with Amy Sugihara on May 30, 2024, in Northampton, Massachusetts.
Nancy Eve Cohen
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NEPM
Mike Brezsnyak, a volunteer with All Out Adventures, plays pickleball with Amy Sugihara on May 30, 2024, in Northampton, Massachusetts.

But it wasn’t always this way. About eight years ago, she was diagnosed with a degenerative disease. Now she gets around on forearm crutches, a wheelchair or a rollator — kind of like a walker.

It took a while to figure things out.

"It was painful emotionally, not physically. It was really hard and confusing," Sugihara said. "I tried to ignore it for a long time because it's horrible losing — just losing your ability to move your body."

Her world shrank, she said.

"I just stopped doing these things because I couldn't do them. And I had no vision for what it could look like, right? Like, how I could still engage with various sports or activities with a disability," she said. "And I was still reckoning with my own perception of myself, of, 'Oh, I have a disability?'"

But now she is active again. And for her, it’s more than sport.

"It profoundly shifts not just the moment — the moment is amazing and fantastic — but it ripples out from there in terms of feeling like I have agency — feeling uplifted and grounded. It changes everything." Sugihara said.

Sugihara is the chair of the Northampton Disability Commission. She was one of about 20 people who recently gathered at the Fort River accessible trail at the Silvio O. Conte National Wildlife Refuge in Hadley to advocate for a bill that could lead to more accessible trails on state land. This kind of trail is hard-packed, usually with a gentle slope and no obstructions, like rocks or roots.

Massachusetts state Sen. Jo Comerford and Northampton artist Meg Bandarra speak to supporters of the Trails For All Act, a bill sponsored by Comerford to assess the accessible trails in Massachusetts, at the Fort River Birding and Nature Trail in Hadley on June 1, 2024.
Nancy Eve Cohen
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NEPM
Massachusetts state Sen. Jo Comerford and Northampton artist Meg Bandarra speak to supporters of the Trails For All Act, a bill sponsored by Comerford to assess the accessible trails in Massachusetts, at the Fort River Birding and Nature Trail in Hadley on June 1, 2024.

Northampton landscape artist Meg Bandarra addressed the group at the trailhead.

"These trails change lives," Bandarra said. "When it comes to access to nature for everyone, our current trail system in Massachusetts unfortunately falls short."

Bandarra is leading an effort to pass the Trails For All Act. The bill would create a working group to assess the current trails that are accessible in the state and sources of funding for adding more. It’s sponsored by Massachusetts state Sen. Jo Comerford.

"Without that full understanding, we cannot take action. We cannot ask for investment. We cannot make a strategic plan to change this," Comerford said, as she walked along the trail.

The bill is currently in the Senate Ways and Means Committee.

Meg Bandarra, Steve Bandarra and Amy Sugihara traverse the Fort River Birding and Nature Trail on June 1, 2024. The accessible trail is part of the Sylvio O. Conte National Wildlife Refuge in Hadley, Massachusetts.
Nancy Eve Cohen
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NEPM
Meg Bandarra, Steve Bandarra and Amy Sugihara traverse the Fort River Birding and Nature Trail on June 1, 2024. The accessible trail is part of the Sylvio O. Conte National Wildlife Refuge in Hadley, Massachusetts.

In the 2024 fiscal year, the Department of Conservation and Recreation's Universal Access Program spent $183,000 on recreational programming. In addition, the Massachusetts Office of Outdoor Recreation awarded $167,000 this spring for inclusive and accessible outdoor recreation events across the state.

The state's Division of Fisheries and Wildlife has accessible fishing sites, in addition to accessible fishing spots in state parks and forests.

All Out Adventures, based in Northampton, is one of the largest outdoor vendors for DCR's Universal Access Program. It also received funding this year from the Massachusetts Rehabilitation Commission. It runs more than 200 outdoor recreation programs a year across Massachusetts.

The group even offers stand-up paddling and seated cross country skiing, said executive director Karen Foster.

She said her team meets people where they’re at.

"One of the things that unites all of us on staff at our programs is that we just all say, 'Yes.' So we look at the individual and we figure out what's it going to take to make their participation possible today," Foster said.

Other groups run outdoor programs for people with disabilities in Springfield and on the Connecticut River in Holyoke.

An adaptive rowing scull sits on the dock next to the Connecticut River at the Holyoke Rows boathouse in Holyoke, Massachusetts. This boat has a racing car seat that doesn't slide, like most scull seats, and small pontoons to increase stability.
Nancy Eve Cohen
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NEPM
An adaptive rowing scull sits on the dock next to the Connecticut River at the Holyoke Rows boathouse in Holyoke, Massachusetts. This boat has a racing car seat that doesn't slide, like most scull seats, and small pontoons to increase stability.

On a recent morning, Stephanie Moore, executive director of Holyoke Rows, which has a contract with DCR to run adaptive programming, pointed out one of its boats with a special seat.

"It’s a fancy race car adaptive seat," Moore said.

Most boats like this, known as sculls, have flat seats that slide. This one doesn’t move and has back and hip support that kind of hugs the rower. This sleek boat is rigged with pontoons on either side to keep it upright.

"The nice thing about putting adaptive rowers in skinny racing boats is that they go fast," Moore said. "A decade ago, we put adaptive rowers in something really wide and really stable and really safe, and they wouldn't go very fast because they're not using their whole body like other rowers are. So, it's been a game-changer."

Joannah Whitney, 64, is a former archeologist who rows a couple of times a week here. She uses her arms and trunk to propel across the water.

"It's really something that speaks to what I can do, not so much about the things that are difficult for me. And the staff here assume that if I think I can do it, I probably can," she said as she rowed upstream.

Joannah Whitney sits on the dock after rowing on the Connecticut River in Holyoke, Massachusetts, on May 28, 2024. Whitney, who uses a wheelchair, said rowing has expanded her imagination of what people are able to do.
Nancy Eve Cohen
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NEPM
Joannah Whitney sits on the dock after rowing on the Connecticut River in Holyoke, Massachusetts, on May 28, 2024. Whitney, who uses a wheelchair, said rowing has expanded her imagination of what people are able to do.

Whitney, who has muscular sclerosis and uses a wheelchair, has rowed as much as 14 kilometers at a time here. She said it gives her the chance to test her athletic ability without bumping up against her disability.

"You need to start learning what can I do in this body," she said. "Do I have to accept everything's done and over, or are there ways that I can do things differently? Rowing has been very much the space that supports that for me."

Whitney said it gives her the psychological and physical confidence to negotiate obstacles on land — like sidewalks in bad condition — or deal with people who assume she needs help.

Back on shore, Whitney said rowing gives her a chance to figure things out independently.

"When I'm out on the water, there's no one to help me and it's been a real gift to have that experience over and over again. To learn — 'Yeah, I can do that. I can figure out' — whatever situation comes up — I can figure it out,'" she said.

Whitney said rowing gives her the chance to be on her own, listening to birds and watching the seasons change on the river. And she said it has expanded her imagination of what people are able to do.

Nancy Eve Cohen is a senior reporter focusing on Berkshire County. Earlier in her career she was NPR’s Midwest editor in Washington, D.C., managing editor of the Northeast Environmental Hub and recorded sound for TV networks on global assignments, including the war in Sarajevo and an interview with Fidel Castro.

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