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Ed Esbeck - Self-Advocate LEND Trainee

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For Edward Esbeck, a 20-year-old native of Uganda who moved to Iowa City, IA, with his family in 2014, leadership is about helping others overcome challenges to accomplish their goals and dreams. Edward is putting this philosophy into action as the first self-advocacy discipline trainee in the history of the Iowa LEND program – an experience traditionally designed for graduate students in health disciplines that involves 300+ hours of interactive seminars, clinical and community experiences, research, and policy projects, and self-reflection over the course of an academic year. As a trainee, Edward is learning about systems of care for people with disabilities, the experiences of family members, and how to grow and thrive in a professional setting.

Edward sees LEND as part of his leadership journey, which he hopes will one day take him back to Africa. “I would like people with disabilities to educate other people and not just the other way around,” he says. This is something Edward is modeling with LEND faculty and peers from other disciplines, according to Kelly Von Lehmden, the program’s training coordinator. “He can take the most complicated subject he’s not familiar with and be able to relate it to a success he’s had or a challenge he’s faced – and articulate it in a meaningful way for all of us.” Edward has also taken advantage of opportunities to engage national audiences. He received a scholarship to attend the 2017 AUCD Conference, where he and the Iowa LEND team spoke about the process of developing a training curriculum that works for everyone. “It was great to see that my presentation was important to other people,” he says.

Empowering Edward to achieve his goals has required significant investment, both in supporting his individual needs as an individual with intellectual disabilities in navigating the curriculum and striving to make the program more accessible and inclusive. His job coach, Judy Warth, serves in this dual role: “My role has evolved from Edward’s coach to coaching the LEND staff,” who have benefited from guidance on how to bring the best out of Edward across elements of the curriculum. She has worked to facilitate a range of natural supports, including other trainees, who have been a consistent source of encouragement. Edward also receives ongoing mentorship from Self-Advocacy Training Director, Mike Hoenig. Together, they prepare for and debrief LEND activities to promote optimal participation. Mike’s personal experience with blindness and professional background in the field of disability and advocacy makes him exceptionally qualified to help Edward navigate what it means to be an advocate in a broader sense (i.e. beyond LEND), from living life independently as an adult with a disability to understanding the range of community advocacy resources available.

Thanks to shared commitment and creative approaches, Edward is striding toward personal independence. His growth as a result of LEND, Warth shares, is evident: “We’ve seen him just really connect with people and become a networker. His intellectual ability to grasp the notion of leadership and run with it continues to blow my socks off.” He is also making significant contributions to others’ journeys along the way. “We are going to be better clinicians, neighbors, and employers because we see him in seminars, social situations, and more. He is a leader and gives us a whole different perspective,” says Von Lehmden. She and the rest of the Iowa LEND team are confident that Edward will apply the lessons he’s learned to future pursuits, and that the lessons he’s taught will resonate with other professionals throughout their careers. The experience, Warth says, has been transformational. “Doing this has changed my perception of what we do – we’re sharing life in a way that is a great model for everyone to see.”

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