Monica Kamal of McFarland and Tina McFadden of Cottage Grove are two of the brightest, cheerful and animated people you could ever want to meet. Their joy in living is obvious and contagious. When first meeting them, you might wonder just what fuels their enthusiasm for life and gives them their deep sense of happiness.
With substantial backgrounds in higher education and professional careers, you might conclude that their disciplined involvement in the world answers the question of how they came to be so content and full of life. But, it isn’t their education, careers or even relationships that have given them inner peace and outer passion. It is their working resolution to each having suffered a traumatic incident that has fueled their love of life. But getting to that point was a major challenge for both of them.
In 1990, McFadden was struck by a boat whose driver had not seen her water skiing. It left her paralyzed from the waist down, confining her to a wheelchair for the rest of her life. Kamal, too, is paralyzed, due to a spinal cord injury, though with her, it was the result of a snow skiing accident in 2001 that left her alone in the wilderness until someone came upon her lying there.
Before their accidents, Kamal and McFadden enjoyed the social and natural worlds like most people, able to get where they wanted, able to do what they wanted without handicap. Like most, they biked, walked, exercised, traveled, attended concerts and parties, and visited whomever they wanted without thinking about it. That all changed, once their spinal cords had been severely injured.
Then it was no longer a simple dash to the park, no easy climb onto a bike, no fast way to use the bathroom or even get ready for bedtime. It all became a chore.
“It was one of the hardest things I even went through,” said Kamal, a master’s of science graduate from NOVA Southeastern University, Miami, and IT consultant for more than 11 years for the CUNA Mutual Group in Madison.
In fact, Kamal and McFadden not only faced their personal challenges, the core of which was learning a whole new set of self-care practices – from hygiene to overcoming depression – they also faced a world not ready to accommodate their physical needs to access what most take for granted. All of a sudden, the simple things and easy tasks were no longer simple or easy when they went to access public buildings, private enterprises, community events, even visits to friends.
The built-world is not ready for the handicapped. Their physical requirements demand redesigning staircases, entry doors, hallway wayfaring, bathroom facilities, cabinet heights, vehicular mobility and a host of other accessibility issues that surround the free functioning of anyone bound to the inflexibility of a wheelchair.
“It was hard, and still is in a lot of cases, just to visit family or friends,” McFadden said. “Not only are homes or apartments not designed for wheelchairs, but with most bathrooms, you can’t even get in, much less have the rails needed to use the bathroom facilities.”
But how does one go about getting the social world to make its buildings accessible to those who must use wheelchairs to freely ambulate? Well, one way is to advocate; another way is to mentor.
“My goals are advocating for and mentoring persons with chronic conditions and disabilities,” Kamal said. “This includes promoting innovative ideas to ensure access for all to enjoy Wisconsin’s natural resources.”
Kamal did more than just overcome her handicap: In January 2006, she founded the Madison SCI Inc., which is a chapter of the National Spinal Cord Injury Association (NSCIA), of which she is still coordinator today.
“Our mission is to benefit and raise awareness of the community of people with spinal cord injury, illness, disease, and related conditions,” according to the website.
Becoming part of a vital spinal cord injury community, Kamal focused not only on mandated federal guidelines to promote handicapped accessibility, she and her cohorts insist on opening up the great outdoors to those who want to enjoy them even though normal routes of approachability are often not to be found. Kamal and the Madison Wisconsin Chapter of NSCIA sponsor and engage in a full range of activities that support their mission, encourage socialization and independence, or are just recreational and fun.
For instance, under an initiative for “Peer Mentoring through Action and Opening the Outdoors,” the Madison SCI announced March 4 that is was the recipient of a $4,293 grant from the Christopher & Dana Reeve Foundation. This grant was immediately applied to purchasing an adaptive tandem kayak and trailer that allows family and friends to kayak together with those having spinal cord issues or other chronic conditions that impact mobility.
The motto of the Madison Spinal Cord Injury Group is “We plan, We go, We conquer!” It is this spirit that fuels the fires of Kamal and McFadden, and a good many other members. The Madison SCI promotes several recreational and entertainment events each year, including hand-biking, the 5K scramble, kayaking and adaptive fishing at picnics. Keeping their members in the loop, the group has even organized a landing page on Yahoo! Groups, where communication is easy and in real time.
The chapter fulfills its mission by a number of avenues. It provides members with an open forum for discussion and education, where the public is invited as well as stakeholders. It also offers mentoring opportunities, organizes adaptive and accessible events and activities, supports community efforts to increase awareness, and improves the lives of people with disabilities, their family members, and those who are their care-givers.
Their meetings usually take place at Wellspring United Methodist Church, 5702 South Hill Drive, Madison, by Garner Park and behind CUNA Mutual Group on Mineral Point Road. Often, besides answering questions and looking into improvements, Madison SCI features guest speakers and presenters on topics of interest to their members, such as the University of Wisconsin-Whitewater basketball team and Madison Curling Club. Kamal said interest surveys are part of their process to collect what members want to know about or take part in.
“We just want to get people out having fun and showing the community just what is possible if the right things are in place,” said McFadden, who is treasurer and member coordinator.
That is why the group may show up at a Concert on the Square or the Memorial Union. With the help of student volunteers from the UW physical therapy program, Madison SCI has also organized adaptive cycling, as well as kayaking excursions.
The road to recovery has been a long one for McFadden, who was hit by a boat on Lake Waubesa in 1990, resulting in a T12 spinal cord injury that left little feeling in her toes and only slight muscle movement in her legs. Back then, the Americans with Disabilities Act had just been passed, and she lived with no curb cuts, no automatic door openers, no customized inclines. The whole disability rights movement was just getting started. McFadden’s joining Madison SCI was one way to further empower her to advocate for a world built to accommodate the injured, and to expand her horizons of what is possible, reveling in the joys once so simple and accessible.
“My life is a lot happier with the group,” McFadden said. “Since the members usually have accessible homes, we all have places to visit that accommodate us. And where we see improvements that need to be made, we have the power of a group and aren’t just left to try to make changes all by ourselves.”
For more information, visit www.SCI-Madison.org.
By Tristan McGough