Neva Allen: Calling on Lawmakers to See Us, Hear Us, Respect Us

Neva Allen a resident of Belfast, Maine, has lived with a neurological condition that weakens her legs for the last 27 years. Now 65, Neva’s condition causes extreme fatigue and pain and forces her to use a power chair. “You see me laying,” she shared while conducting her interview from her bed, “this is the way I am in my life,” she said. Sitting for long periods is painful, and daily activities are limited by her condition. On some mornings, she wakes with just enough energy for basic hygiene and movement with her aide’s help. “Some days I wake up and I literally can barely lift my head.”

Her symptoms began even before age 38, but it was then that she could no longer work. She applied for Social Security Disability and, despite being told she would likely be denied, she was approved on the first attempt. “It was a very hard thing for me to accept,” she said. “When I got the first check for social security disability, I cried because I didn’t want it. Nobody wants this at all.”

Doctors initially diagnosed her with primary progressive MS. More recently, she received a possible diagnosis of a Parkinsonian condition due to tremors. Her health varies daily, and she never knows what to expect from one day to the next. She has also experienced significant challenges, including losing her voice for three years.

Neva relies on MaineCare, Social Security Disability, and housing assistance. The thought of losing Medicaid and ACA coverage deeply unsettles her. “It scares me to death,” she said, questioning how lawmakers could support policies that would jeopardize the lives of people with serious health needs. “Don’t they realize that they could be one of those someday experiencing health issues?”

Neva worked from the time she was 16 until her condition forced her to stop. “I wasn’t somebody who didn’t work. I love my work,” she said. “I was told if I paid into my social security that I would be covered if something happened to me.” The growing narrative that disabled individuals are a burden on society troubles her. “People like me have done everything that we were asked of at the beginning to be part of society. She struggles with idea of the disability community being viewed as disposable, “I really do feel like they don’t want us to be alive,” she said.

If Congress were to cut Medicaid and roll back ACA funding, Neva would lose her services, her medications, and her ability to manage the pain and challenges of her condition. “Without my services, I don’t know how I would get along,” she said. While disabled individuals in America are exempt from work reporting requirements, the red tape surrounding eligibility checks will lead to many being dropped off their care for something as simple as a an error in their paperwork.

Asked what she would say to lawmakers, Neva replied, “I would tell them that they’re wrong. That they need to be looking at other things to do because what they’re doing is cruel and inhumane.” Neva emphasized that the proposed cuts benefit the wealthy at the expense of the most vulnerable. “The people that are trying to give the tax cuts to don’t need those tax cuts. And if they got sick, they could afford health care.”

 Neva expressed a wish that lawmakers would speak directly with disabled people. “I really do wish that they would hear people who are disabled and who are in power chairs or wheelchairs or in beds. I really wish they would take the time to come and talk to us.”

She called for a return to shared responsibility and compassion. “What happened to the idea that we take care of each other? That’s why things like Social Security were enacted… so that older people didn’t have to live with families or be so horribly poor.”