We caught up with the brilliant and insightful Monica Spaeni a few weeks ago and have shared our conversation below.
Monica, thanks for taking the time to share your stories with us today We’re complete cheeseballs and so we love asking folks to share the most heartwarming moment from their career – do you have a touching moment you can share with us?
Nature is for everybody and every BODY!
We’ve received so many heartwarming testimonies from our clients. A visitor (S.K.) at one of the nature centers who have our equipment available said, “It was long overdue for me since my neck injury in 1969. I was an active outdoorsy person before. Happy trailin’ ya’ll!” Hearing stories like this is incredibly rewarding. A special education teacher (S.V.) mentioned how our wheelchair allowed them to actively engage with students on a field trip. The impact on their lives and the connections they make with nature and loved ones are truly heartwarming. AAW equipment was used with an older gentleman who loved fly fishing and two months after his outdoor adventure he passed away. His daughter reached out to thank us for providing such a service that let her father experience his passion one last time. Two other adventures outdoors were with a family member being able to tap trees on their property to make maple syrup with the family. Now, that’s yummy! Finally, AAW provides an opportunity to explore Dorothy Carnes Park. “Access Ability WI’s OWC enabled me to explore areas that I can no longer walk to. This enabled me to spend more time outdoors with family and friends and see migrating birds I may not have had a chance to view without using the chair to reach the destinations.” (J.C.)
These are just a few highlighted stories. Here are a few more for your perusal: https://www.accessabilitywi.org/testimonials
The AAW team is passionate about serving all people, regardless of their abilities. That’s why we encourage organizations and individuals to partner with us to increase access to the outdoors in their communities. By collaborating on marketing, increasing access, and leadership at various outdoor events and activities, we can create a more inclusive and welcoming environment. We believe in community-driven programs and services that empower individuals of diverse backgrounds and all ages.
As always, we appreciate you sharing your insights and we’ve got a few more questions for you, but before we get to all of that can you take a minute to introduce yourself and give our readers some of your back background and context?
In 2001, I was a parent chaperone volunteering for one of my son’s 6th-grade ski trip when I hit my back on a tree after falling to avoid some kids playing around on the slope. Being paralyzed from the mid-chest down, I learned all too quickly the difficulties of paralysis. I had to relearn how to dress, toilet, shower, and perform daily activities of living while still being an involved mother. I experienced the difficulties of decreased income and increased costs of a disability.
In 2006, I started Madison Spinal Cord Injury (MadSCI) Group to help people with similar disabilities have educational, recreational/health, and social programs/events, including adaptive cycling and kayaking. At one of these events, I kayaked at a state park. Being on the water, in the middle of the woods, and at one with nature gave me an overwhelming feeling of inner peace and calmness – feelings I hadn’t felt since my injury. This feeling left me wondering how to experience additional outdoor activities – not sitting on the sidelines, but having the choice to embrace nature autonomously.
An opportunity came in 2012 when I participated in an outdoor event using a borrowed Action Trackchair – independently traversing through a cornfield and marsh. It was an incredible feeling, to be free and independently traversing, I hadn’t experienced such freedom since my injury. Wow!
This experience planted a seed and in 2013, I co-founded Access Ability Wisconsin (AAW) with Ray Anderson, Steve Spaeni, and a few others, with the vision of “Outdoors Access 4 All!”
Interacting with nature delivers proven benefits to people, including boosting self-esteem and having a positive impact on overall well-being. And yet, in the United States, 54 million people are living with disabilities that could be barriers to participating in outdoor activities, including 5 percent of children ages 5-17, 10 percent of people ages 18-64, and 38 percent of adults 65 and older. Across the country, 21 million are living with an ambulatory issue. In Wisconsin alone, more than 675,000 people have some sort of disability that limits their access to public wildlife areas, picnic grounds, parks, festivals, outdoor concert venues, and any location off the beaten path.
Medical mobility equipment typically covered by health insurance (e.g., walkers, wheelchairs, and scooters including knee scooters) helps people with permanent or temporary mobility issues get around their home and move around outdoors where surfaces are flat. But when “stepping” off the sidewalk, users of conventional mobility equipment encounter barriers that limit their participation in most outdoor activities. Imagine going hiking in your everyday shoes, high heels, or open-toed sandals. You would definitely want more substantial footwear to participate with full enjoyment. Now imagine that a pair of hiking boots will cost $26,500. How often would you be able to really experience the great outdoors?
This is the challenge that Access Ability Wisconsin, Inc. seeks to address. We actively advocate for opportunities for individuals* with mobility challenges (whether acquired at birth or later in life) to access outdoor recreational experiences promoting access, inclusion, equity, and healthy living.
Clients report significant increases in independence, dignity, and freedom along with the ability to experience the great outdoors with family and friends or on their own. We are facilitating and providing the means for individuals with mobility challenges to access and enjoy nature and the great outdoors. We accomplish this by providing outdoor all-terrain wheelchairs for those with physical challenges (temporary or permanent) to use for free, wherever they choose to recreate.
In 2014, AAW purchased its first outdoor wheelchair and the fleet has now grown to 27 all-terrain wheelchairs with enclosed trailers that are available for anyone to borrow, at no cost. All chairs have a seat belt, leg strap, two batteries, tracks instead of wheels, a joystick, and go at a walking speed (2-4 miles per hour). Accessories like the attendant control and a chest strap are made available too. Why are these outdoor wheelchairs unique? They use track wheels giving the ability to traverse the outdoor terrain similar to what one could do prior to their mobility difficulties. With a tilt switch the person can level the seat while going up or down a hill to ensure safety, balance control, and comfort. Most of AAW’s chairs have a 20” wide seat and the fleet includes three specialty chairs: a narrow chair that can fit through 36” doors and go into a building, a 24” wide chair, and a standing chair. In addition to the chairs, AAW provides trailers to transport the chairs. These trailers have a ramp and pull system so that they can be used by most people with disabilities.
Chair reservations can be made through AAW’s website or over the phone and are available both to individuals and organizations, who will reserve multiple chairs at once to enable attendees to participate in outdoor activities. During the reservation process, AAW ensures that the interested party has an adequate vehicle to safely pull the trailer and upon pickup, borrowers are trained on how to use the equipment by staff or volunteers. When the chairs are returned, staff or volunteers similarly assist in the check-in process, inspecting the wheelchair and trailer for damage and noting any maintenance needs.
To ensure it is reaching the full disability community, including seniors and veterans, AAW partners with organizations to facilitate our hosting program locally. These organizations assume responsibility for the reservation process and maintenance of AAW’s equipment in their geographic area, extending AAW’s reach and allowing even more people access to the great outdoors; nature in its purest state in uneven terrain.
In order to extend awareness and allow children and adults the chance to experience the chairs’ uniqueness and ability for them to personally have access to the outdoors, AAW works with community partners on their events to help them make them accessible.
Want to Increase “Outdoors Access 4 All” in YOUR Community?
Partnering Organizations – Here’s a way to work with AAW using our expertise and resources to increase outdoors access in your community. This is done by partnering; we collaborate on marketing, increasing access, leadership, and participation at multiple outdoor events and activities.
We strive to increase public access to nature and recreational opportunities while promoting environmental stewardship from education to leadership. What does this mean? We are not asking you to make grave and blacktop paths. We are asking you to include people of all abilities in the planning and decision-making. We collaborate on community-driven programs and services that empower individuals of diverse backgrounds and all ages.
We encourage organizations and individuals to reach out to learn more about AAW’s expertise and resources.
We often hear about learning lessons – but just as important is unlearning lessons. Have you ever had to unlearn a lesson?
You know, I’ve had to change the way I approach things because I always tried to please people and be a perfectionist. Before, I used to take charge and handle almost everything myself. But for the growth of the organization, I realized I needed to let others step in and give it a try. If things didn’t work out as expected, I’d guide them and myself through a “lessons learned” process. I’ve come to understand that it’s okay if things don’t always go perfectly – that’s part of the learning journey.
Now, I’ve learned to take a step back, analyze the issues, and figure out why things didn’t work out. The real challenge is finding ways to get someone else to take ownership and tackle the problem the next time without repeating the same mistakes. It’s all about continuous improvement and making sure we learn from our experiences.
As a non-profit, our main goal is to expand the organization and make sure we can serve everyone – and I mean everyone! It’s essential that people with mobility difficulties and physical disabilities are involved in the planning, operation, and leadership of community activities and events. Otherwise, we won’t truly represent our diverse community. We’re committed to promoting equal access to nature for people of all abilities and work hard to achieve this.
Working with AAW on community engagement, local organizations may collaborate with us to create outdoor activities, events, and recreational spaces that are welcoming and accessible for everyone. We discuss everything from language to logistics while we look at SMART goals and work with a checklist.
If you could go back, would you choose the same profession, specialty, etc.?
This wasn’t my first profession. I have a Bachelor’s degree in Mathematics and Computer Science and a Master’s degree in Instructional Design and Distance Education.
I came to the nonprofit world due to my love of helping people. People don’t understand the world of disability. Having been able to do anything I wanted and visit anywhere I wanted were the capable glasses I had. I am still capable. However, I can’t just pick up and go visit family and friends. Everything costs more and takes more time.
The days when people were complaining about being isolated during COVID were interesting to see how the general public reacted. Seeing these tinted glasses on others, made me ponder on how the general population now has a small sense of what people with disabilities feel on a regular basis.
Contact Info:
- Website: https://www.accessabilitywi.org/
- Instagram: https://www.instagram.com/access.ability.wi/
- Facebook: http://www.facebook.com/AccessAbilityWI
- Linkedin: https://twitter.com/AccessAbilityWI
- Twitter: https://www.linkedin.com/in/aaw-sci-helping-others
- Youtube: https://www.youtube.com/@outdoorsaccess4all
Image Credits
Ackerman + Gruber; Access Ability Wisconsin