TRENDS Podcast: Living With Disability

The TRENDS podcast is a collaboration between the Community Foundation of Boulder County and KGNU. It dives deep into the community’s most pressing issues and explores the changes happening throughout Boulder County through the experiences of community members, especially those often rendered invisible by commercial media, to shed light on community challenges, solutions, and pathways forward for the county and the country.

Listen to this TRENDS podcast episode below:

This time on the TRENDS podcast, a collaboration between KGNU Community Radio and the Community Foundation of Boulder County, we take a look at the challenges facing those with a physical disability, the issues they face and the solutions that they themselves are creating.

Osvaldo Gomez spends time with Linda, one of many seniors in his Zumba class at Applewood Living Center in Longmont that experience low mobility or are in wheelchairs.

Being visually impaired does not stop 82-year-old Oswaldo Gomez from getting up and helping others in the community who are struggling with physical disabilities.

“I’m from Cuba, a professional dancer from my country. I’m working here as a volunteer because I like to give. I’m helping people.”

Osvaldo is determined to share his talents with the community, despite his own physical challenges. Today he is teaching a Zumba class at the Applewood Living Center. Most of the people in his class are elderly, dealing with a physical disability and in wheelchairs but that doesn’t stop Oswaldo.

“The music makes you move your body. It is what I do. They move because they sit so long in the chair. They need to move, it makes them happy.  They don’t even know they move but they move.”

Osvaldo is visually impaired which can often lead to isolation. He has been able to stay connected to the local community through his volunteer work helping others with disabilities. He can stay connected to the outside world through adaptive technology.

Kim Ann Wardlow at the production studio of Audio Information Network of Colorado where she explains how they provide audio access to print for individuals who are blind, visually impaired, or have another condition that makes reading difficult and isolated.

Kim Ann Wardlow is the Executive Director at the Audio Information Network of Colorado that provides audio access to print for individuals who are blind, visually impaired, or have another condition that makes reading difficult for them.

“The seniors, if they have lost their vision later in life it’s often very difficult. They’re trying to learn many alternative techniques and ways of doing things without vision all at once. Very different from learning starting as a child and learning throughout your whole life. And that can be overwhelming in some cases. They may have other conditions that make mobility difficult. And so combining that with vision loss, it’s not unusual to see someone become isolated in their home and not getting out and about as much.”

Of course, not everyone dealing with physical disabilities is a senior. For some, it is something that comes earlier in life. This was the experience of longtime Boulder resident, Jeannine Fox.

Jeannine Fox’s MS does not stop her from getting out on walks in nature and connecting to immigrants by teaching English at Intercambio Uniting Communities.

“I’m fifty-three and I was diagnosed with MS in August of 2011 and my father actually had MS as well and was completely disabled, a quadriplegic, couldn’t move anything. So I’m familiar with the disease, unfortunately. And once I was diagnosed, I had to retire from doing real estate because my disability, disabled me.”

It takes a lot of effort for Jeannine, an avid cyclist and swimmer, to get out and about, but she does it to stay connected.

“So for longer traveling and for longer distances in town, I’m on an electric scooter, but maneuvering around town I can do on my sticks. But I move very, very slowly and the effort it takes for each step in concentrating so I don’t trip and fall means that I’m not engaging with people. And that makes me definitely feel like more of an outsider than I already feel.”

Another way Jeannine stays connected and finds a sense of purpose is through her volunteer work at Intercambio. She teaches English several times a week.

“And that has been, I think, the most rewarding thing I’ve ever done. So I have, I guess, the disease to thank for that.”

Jeannine Fox says that having a physical disability in a community as sporty and healthy as Boulder can lead to even greater feelings of isolation.“I feel like it’s just a community of Lycra and a lot of heavy breathing and reps and you know, your ability to perform to the highest level you can. And that’s just not anywhere in my sphere at this moment.”

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Eugenia Brady is another Boulder resident who was faced with a physical disability that turned her life upside down.

Eugenia Brady enjoys chatting with her daughter Brittany in her accessible apartment at Kestrel Community in Louisville while Xander the dog relaxes in her wheelchair.

“I got amputated in November two years ago and so that changed my life. My whole life changed.”

But because of her prior work in the community, Eugenia felt supported when faced with her own challenges. She is a family advocate for the Association of Community Living. The ACL supports people with intellectual and developmental disabilities.

“I have been an ally of people with disabilities for many, many years. I learned so many things from them and so I knew that life goes on. You cannot sit down and see your life go by. Right. You cannot, you cannot do that. You have to keep going. I’m not saying I had that I didn’t have and I don’t have issues. I do still have challenges that I need to face.”

Some of those challenges include accessibility.

“If I get to school and I get like in the back parking lot and there’s nobody there who can see me, it’s going to be bad because I need the help of somebody taking out my wheelchair from the car. And then, me getting into the wheelchair and then I can go to the meeting. If that meeting happens to be in a building where they don’t have an elevator, that’s gonna be a challenge for me. I cannot do that. So it is different things that I have to think about when, how am I going to continue to do this?”

Eugenia has been able to continue in her work by using technology.

“So what I do now is offering my services via video call or a phone call.  It’s exciting to see that, that we can still continue to do, things that I used to do before. Not exactly the same, the same way, but a little different. But the message is the same.”

While Eugenia was able to continue with her work many others like Jeannine Fox face the prospect of losing a job. According to the Department of Labor, the unemployment rate for people with a disability was 8 percent in 2018. That is more than twice the rate of those with no disability. Teresa DeAnnie with the Boulder County Area Agency on Aging says that the entire community needs to be involved in the conversation about how to support those with disabilities.

“We really need a dialogue about what the needs are and what we are able to offer and what we need to plan to offer in the future. It’s gonna really help everybody in the long run.”

And she says, it is so important that our community recognizes the challenges facing many with disabilities and the risk they run of becoming completely isolated.

“Well the whole aspect of visibility, being seen, is feeling acknowledged and valued in our community. And that’s very important. It also speaks to if you don’t feel valued, if you don’t feel like you can be comfortable in community than you are by virtue of that situation, you’re becoming socially isolated and not part of the community.”

The City of Boulder is making an effort to make more and more public spaces accessible. Topher Downham is quadriplegic and has been leading that effort as outreach coordinator with Open Space and Mountain Parks.

Topher Downham, known in Boulder as the “World Traveler Quadriplegic”, on one of the trails he helped classify as accessible as an outreach coordinator from the City of Boulder Open Space and Mountain Parks.

“24 years ago, I was hanging out with my Norwegian buddies here in Boulder. I dove [into a pool] and put my arms down, ended up just smacking my head in the bottom of breaking my neck, the C six, seven lowest two vertebrae on the cervical collar and cervical area and couldn’t move my arms or legs. So I got a lot of surgery on the neck. Cadaver bones were put in and a titanium plate. So I was able to get my biceps back from that and then I was eventually able to get triceps too.”

Topher did recover some motion in his hands.

“That has made all the difference in the world for me getting out and about. I can drive my own car, I can bike, I can ski, I can do all sorts of different sports. I can hike and if I fall out of my chair, I can get back in. Like one of the things that I did right after I got in the wheelchair was get out a lot. Whenever I got pissed off at the world, I’d go for a push and I’d find one of the trails around Boulder and just push as hard as I could get the endorphins going and don’t just hang out and meditate by a stream. And I felt better. Again, I felt the connection with nature and I felt the connection with people.”

That connection that Topher gets with others when he is outdoors has driven him to make more open spaces accessible.

“So because of how I felt when I went out there, I started to think, wow, I should help other people get out here. And so I worked with some different groups. I volunteered to put together a guidebook and, we put it together, got other people out. Then I eventually got a job here and open space mountain parks and we started taking people on hikes and we fall color hikes and bird-watching hikes and people with disabilities doing all sorts of different things.”

Vijay Viswanathan also works with Boulder open space and mountain parks on accessibility. At a recent adaptive sports event he spoke of his own experience and how he got involved in the work.

Vijay Viswanathan was injured in a repelling accident that left him paralyzed from his chest down but thanks to Craig Hospital’s progressive Therapeutic Recreation Program he was able to get back into one of his passions, climbing.

I was injured in 2003 in a repelling accident that left me paralyzed from chest down. Being in Boulder has been a blessing because of all of the motivated, active people that are attracted to this town and that live here. Right after my accident, I was fortunate to meet a number of people that were excited about helping me get back into the sports that I used to do, that I used to love like skiing and climbing and fishing and I was fortunate to have also been able to be admitted to Craig hospital that has a really progressive outdoor recreation department and therapeutic recreation staff that was able to help get me back outside and active very soon after my injury.”

Vijay has also worked with CU Boulder in helping their recreation programs become more inclusive. He says it’s so important that we provide opportunities to recreate and exercise.

“It can be hard sometimes to get outside, especially when you’ve got a disability that might require you needing help from other people to participate in a sport or assistance while you’re out. If you get stuck or you know, maybe fall off a bike or something like that or fall while you’re skiing. But like I said, being here, I’ve found a community that is always available and willing to help get me outside and the company.”

After Ignite Adaptive Sports taught Bill Goldstein to ski with one leg he went on to teach others with disabilities how to keep on enjoying the mountain.

Adaptive sports is growing here in Boulder County.  Bill Goldstein discovered adaptive sports 5 years ago when he lost his leg to a diabetic infection.

“I was very fortunate to discover Ignite Adaptive Sports. Ignite teaches people of all disabilities, snow sports, which includes snowboarding, skiing, cross country skiing, and we do this at Eldora mountain right here or outside of Boulder. And one of the things that we’ll do is,  we try to keep it affordable because as you just alluded to, there are many costs associated with being disabled and certainly with, with skiing. In my case, you know, it was really kind of a life-changing event. First getting back on skiing, then becoming an instructor and learning to appreciate how much joy really comes from helping others and giving.”

There are many people working to make Boulder County more accessible. One of them is Craig Towler. He was thrown into this work after an accident.

“It was July 4th, 2016 I was standing in front of my house right here in Boulder off of 30th street after putting on a race at the Boulder reservoir. And there was an impaired and texting driver who went out, went off the road and hit the car parked behind me. And I was standing at the bumper at the time and it shot that car forward and crushed me between the bumpers immediately disconnecting my legs right there on site. I was taken to Boulder community hospital and then flight for life to Denver Health where I had both of my legs amputated.”

But in his recovery, Craig realized that there were gaps in the support.

“I remember speaking to a nurse one morning in early August 2016 and she said: I heard you’re gonna go home tomorrow. And I looked at her and said: really?”

Craig Tolwer enjoys skiing thanks to hard work, dedication and the Ignite Adaptive Sports programs.

Craig says his experience led him to create a service called Amputee Concierge, an online victim advocacy platform designed to help direct people to resources.

“I was looking at the issues that I was helping trying to figure out with myself and for members in the community. I realized that accessibility fit perfectly in there because now as a bilateral amputee, I have mobility needs and right now my main form of mobility is a wheelchair.”

Craig’s vision has come to life in the co-op Accessible Boulder. He is asking for input from those impacted by physical disabilities and mobility issues so this community can create solutions for itself.

“As a co-op, what we’re doing is opening it up to collecting data through crowdsourcing so that anyone and everyone who has a specific need, wherever they go, they’ll have the ability to fill out a mobility checklist and send that information to us for us to then post and share with the community so that we can try and get a snapshot of everyone from the community and share as many different perspectives and needs as possible so that we can be inclusive of everyone.”

Interviewees & Helpful Links:

 

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The TRENDS podcast is collaboration between the Community Foundation of Boulder County and KGNU looking at issues affecting our community.