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Maggie Winston was a 21-year-old hairdresser and mother of identical twin boys in the small town of Kenai, Alaska, when she woke up one morning and felt cramping between her shoulder blades. Within an hour, she couldn’t walk. When she arrived at the local emergency room, Winston was in such dire shape, she had to be taken by medical transport to Anchorage. There, she was diagnosed with idiopathic transverse myelitis, a rare condition in which the body’s immune system attacks the spinal cord, causing swelling and often lasting loss of function. The swelling in Winston’s spinal cord was at the C3 vertebrae, leaving her permanently without the use of her arms or legs. She spent months in the hospital on a ventilator before recovering enough to go home.
“Coming back home to Kenai was devastating,” Winston recalls. “My kids’ father and I had been together for four years but that ended the day I got back. I remember the feeling of being abandoned and thinking, ‘Who is going to want me now and how am I going to be a mom?’ The devastation was just through and through.”
In many states, going back home would not have been an option. But, because Alaska has a robust system of home- and community-based services (HCBS) for people with disabilities, she was allowed to choose what services and supports she received at her home. Winston moved in with her “amazing mom” and received 24-hour care from the state. Within a year, she relocated to her own apartment and began sharing custody of the twins. Supporting her were three aides who assisted with daily living activities. “I needed someone to be my arms and legs. I didn’t need someone to tell me what to do,” she says. “I just needed someone to help me get my clothes on and get from point A to point B.”
I remember the feeling of being abandoned and thinking, ‘Who is going to want me now and how am I going to be a mom?’ The devastation was just through and through.
Body
Winston was starting to imagine what she wanted for her life when she suddenly developed a serious pressure sore that led her to be hospitalized for months. She underwent surgery to cover the wound, but after going through rehabilitation, the wound reopened, requiring a second surgery and more months in the hospital to recover. After that experience, “I was ready to grab life by the balls. I was so ready,” she says. She dyed her hair bright red and applied for a home loan. “I needed to look like someone stronger and better than I felt.”
Through a joint program between the State of Alaska and the U.S. Department of Agriculture, Winston’s friends and family members helped build a single-family house for her. Their sweat equity meant Winston did not have to make a down payment and she qualified for a low-interest mortgage.
I have a compelling personal story, which allows me to say, ‘We need money for HCBS and here’s why: I’m able to do all these things because of the support I received.’
Body
During her recovery from the second surgery, Winston began college classes online and volunteered for the Kenai Peninsula Independent Living Center, which led to a spot on their board. In 2015, after years of strenuous effort and resilience, she finished her psychology degree and was appointed to the Alaska Governor’s Council on Disabilities and Special Education. Winston quickly became vice chair and then chair of the group. Council members traveled to the state capital to meet with legislators to talk about disability issues and to advocate for expanding services and supports for people with disabilities, namely HCBS. “Finding my passion was so cup-filling for me. I have a compelling personal story, which allows me to say, ‘We need money for HCBS and here’s why: I’m able to do all these things because of the support I received.’ I’m very fortunate because I was able to navigate the range of services that are offered.”
In 2018, the Governor’s Council received a $2.5 million Living Well grant from the Administration for Community Living, part of the U.S. Department of Health and Human Services. The funding allowed the creation of a full-time position to coordinate all the state agencies in Alaska that address the needs of seniors and people with disabilities. Winston got the job.
Now, at 37 and with her sons finishing high school, Winston plans to stay in her role for the remaining years of the grant but after that, “I’d like to do something more creative and artsy,” she says. “I’m a people person and I like talking and sharing with people. Maybe I’ll do a podcast. Everything I do will tie in some way with disabilities because that’s where my heart and soul is.”