Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee

Paul (47), Other, Davidson County

"He is most worried about being able to retire comfortably, because the extra cost of having a disability is not quite covered by the support he receives from the state alone."

  • A Student interview of self-advocate's Perspective
  • Posted on 8/21/2013

Paul is a person living with Arthrogryposis Multiplex Congenita (AMC), a congenital muscular condition that severely limits joint mobility and necessitates a wheelchair for movement.  Paul was born locked into a fetal position, without good control of his arms or legs.  He uses an electric wheelchair to get around, and a mouth stick which enables him to press buttons on his cell phone and use other devices such as his computer.  One downside he mentioned about this mouth stick is that the appearance resembles the white sticks on some wheelchairs that control motion, which sometimes causes people to misunderstand his condition.  AMC does not often fit neatly into other groups of disorders, and so lends itself to incorrect assumptions and to being overlooked for support opportunities.

One of these assumptions is that Paul’s daily life is necessarily so different from that of the “average” person.  When asked about his normal day, Paul responded, “My typical day? I get up in the morning. I get dressed. I get ready for work 5 days of the week. It’s no different I would think than most.  What is yours like?”  Paul wonders about the tendency to look at people with physical disabilities as either inspirational or to be pitied, rather than as people who get up and go to work each day, the same as most of us.

Paul is a Computer Programmer/Analyst for the DIDD, where he works on software that helps keep track of people who receive care from the state of Tennessee. As a state employee he is able to ride Nashville MTA's Access Ride for free, and so this is how he usually gets to work in the morning.  He wakes up early so that he can leave around 6am, and is usually ready by 5:15 so he can relax a little beforehand.  Access Ride provides door-to-door carpooling to work, so that Paul doesn't have to drive a car himself.  

Paul's grew up with five older siblings and his parents fought hard for him to have access to the same quality of life and education they had. He was born in Nashville, and initially attended a Catholic preschool, where he was taught by a nun who had particularly forward thinking ideas about what children with disabilities were capable of. When he entered Elementary, he attended a school which his parents claimed was little more than babysitting, with 8 other individuals. Whenever he got home, his parents would make him read books and keep up on studies outside of class as best they could, while both working jobs to fill extra expenses associated with his additional needs.

As he approached high school, Metro began mainstreaming students with disabilities, but did not provide extra support or special education. His parents again fought for him, and got him entry into a Catholic high school, where he still had what he described as “the worst four years of [his] life.” He at least had educational opportunity, and did well enough to make it to St. Andrews Presbyterian University in North Carolina. Paul considered college some of his best years, and there he had for the first time a rich set of experiences both with people like him, and many other groups. During his time there he did not ever have to think of his disability as limiting, and classes he attended were in a few cases able to leverage the diversity of the students to discuss issues of disability rights. He also was able to further his interest in computers, eventually receiving a Bachelor's degree in Math and Computer Science.

Since college, Paul has found himself on the receiving end of discrimination related to his disability much less frequently than before college, but doesn't feel quite the same amount of comfort related to the fulfillment of his physical needs as he did then.  He is most worried about being able to retire comfortably, because the extra cost of having a disability is not quite covered by the support he receives from the state alone. More generally, his hopes for the future include a hope that humanity becomes more inclusionary towards people with disabilities, offers better access to the same kinds of resources that non-disabled people have, and better access to financial support that makes their disabilities a non-issue. He also hopes that schools move as close to possible toward full inclusion of people with disabilities, and believes that we won't have a truly fair system until that is the case. 

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