Having lived most of her life as an able-bodied person, Jean Mwale has witnessed both sides—before and after amputation. Like many others, she is experiencing firsthand the physical challenges and insurance barriers/inequities that often accompany limb loss or limb difference. However, as the Amputee Coalition’s Regional Ambassador for the Northeast, she also understands that change can happen through advocacy. Her focus during the Coalition’s in-person advocacy event was to bridge the gap between knowledge of disability and the experience of being disabled.
Traveling from Pennsylvania to Washington, DC, Jean attended the Advocacy Education and Hill Day on April 17-18 and joined forces with 27 other advocates from around the country. This two-day event was strategically planned during Limb Loss and Limb Difference Awareness Month to maximize its impact. On the first day, advocates gathered for training at the national office to prepare for sharing their personal stories at the Capitol. “My favorite part of the training was the mock sessions,” Jean said. “When John [Register] was speaking, he reminded us that the people we would be meeting with are human beings too. I learned to change the narrative and approach them as fellow human beings.” She also cherished the opportunity to meet and converse with other amputees who shared similar experiences. “It was incredibly gratifying to hear their stories and realize that all these people were here for the same reason, going through what I experience every day,” Jean shared.
In 2016, Jean lost both legs below the knee and four fingertips to a severe septic shock infection. However, this loss provided her with a newfound perspective on life. Finding her voice in the aftermath and using it to become an advocate for the community has given her loss a greater sense of purpose.
Confident in the mission, Jean headed into her first Hill Day expectant for the impact the meetings could bring. Throughout the day, she met with the staff members of Rep. Guy Reschenthaler, Senator Bob Casey, and Senator John Fetterman, who represent her state. Stepping into the halls of the Capitol, Jean took in the breathtaking surroundings and marveled at the significance of being there. “I never in my life thought I would be in a position to go to the Capitol and advocate for what I go through every single day, every minute, every second.”
Her group’s first appointment was with Reschenthaler’s legislative aide, Jay Malak, and at first everyone was a little nervous. Jean recalls someone reminding her that their purpose was to be heard, which immediately helped her relax. Sitting down to share her story, Jean emphasized that amputees like her can’t be independent without insurance fairness to access the prostheses that will enable them. “I said we’re just asking for you to recognize us and advocate for us because we need it, and they were genuinely listening.” Jean remarked. She left that meeting and the experience touched by the compassion they were shown. “He [Jay Malak] was engaged and he let us know. We were treated so kindly.”
Although Jean is outspoken for the community now, it took her a little while to embrace her advocacy role. She strongly believes that one person and one story can make a difference because she has seen it happen in her own life. To those who, like her, don’t feel like they can speak up, she offers encouragement and a challenge. “Every person is unique, so every disability is unique, and you never know how your story is going to impact somebody else,” Jean said. “There are people who have a similar story to yours, but they won’t share it because you’re not sharing. Help the next person tell their story to those in power who can make a change.”
Sharing personal accounts to help others truly understand the reality of living with an amputation or limb difference is a powerful way to increase solidarity. “Change begins at Capitol Hill and to be part of that I’m humbled, grateful, and inspired,” Jean said. “My voice made a difference.” Like Jean is modeling, your story can be the one that moves the needle on groundbreaking legislation, if only you let it be heard.
If you are interested in becoming more involved with advocacy in your state or on a national level, the Coalition’s Lead Advocate Training is your next step.