Tennessee Kindred Stories of Disability

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



Michael (42), Cerebral Palsy, Knox County


"'I’m a people person,' Michael says as he looks over to his long-time friend Jonathan and smiles, 'but I have to have assistance.' "

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

Michael and his mom live together in a modest house in Knoxville, Tennessee. Born in 1970, Michael was removed during birth with forceps causing brain trauma that resulted in a cerebral palsy diagnosis. He uses a motorized wheelchair and has fine/gross motor skill impairments.

Michael is a college graduate with specialized computer skills. He has a sharp wit and affable personality—a self-proclaimed “people-person.” His needs are not predominantly medical—simply maintaining the basic components of life and survival. His wants are about enrichment—living a life that is social, independent, and fulfilling.

“I’m a people person,” Michael says as he looks over to his long-time friend Jonathan and smiles, “but I have to have assistance.” He especially enjoys the social aspect of church. “I know the number one reason is to worship God, but you also need to be with people.” A common theme in Michael’s story revolves around friends agreeing to help out with rides to church and other social functions, only to discover that they were perhaps overzealous in their initial commitment and could no longer continue to be there consistently. “Not everybody is cut out to help people. They have to be willing and able, and have the time,” he says.

Michael has the same desires of any other 42-year-old—he wants to work, live independently, and spend time doing the things he enjoys. Because he is the only son of an aging mother and also uses a wheelchair, his most prescient need is related to transportation. Michael recalls, “I used to go to a church out here and I was part of a group and they included me in things, but the church group got tired of helping with me…they got overwhelmed. They said that they weren’t trying to be mean, but they thought I should go to a different group, and that made me feel bad.”

Michael humbly acknowledges that his disability is out-of-sync with our fast-paced society. “We live in a busy world—but having a disability, not being able to drive or get out and go places…I have to have assistance. Now we do have a KAT (Knoxville Area Transit) bus, which takes me back and forth to work, but [people with disabilities] like to also be able to be with people. And on the bus you’re kind of alone…” Plus, the KAT bus has limited routes and service hours (not on Sundays in his area) and costs $6 round-trip—not worth it for short trips into town.

“I tried to hire people to come into my house and help me with personal stuff and take me places, but they charge like 9 dollars an hour, and I don't have that kind of money”—noting modestly that he and his mother are, “not rich people.”

Michael’s friend Jonathan raises several good points about awareness in the community. “If someone looks at Michael…they probably assume that he is taken care of,” he says. And, “unless you have someone in your life, someone with a disability with whom you have a personal relationship, you as a member of the community are unlikely to know what needs someone like Michael has.” He also says what Michael doesn’t seem to want to—“it can be awkward for the disabled person to ask for help, ” so if it isn’t offered, it never comes.

Michael nods in agreement, “If I had the money to hire someone to come help—I’d do it in a heartbeat. I am on family support through the CPC (Cerebral Palsy Center), but what I get does not go far. I could use that money to hire someone, but that would only last a few weeks.”

Michael is sympathetic to recent cuts to CPC’s funding, but expresses concern over what will happen to adults with disabilities when their caretakers get too old. Michael knows all too well what it looks like to face the inevitability of an aging parent. Last January, his mother had a heart attack and spent 15 days in the hospital after triple-bypass surgery. During that time, his friends came together and “saved his life.” However, “when she came home, a lot of them left…I haven’t heard from some of them in a while.” Fearing that another medical emergency could leave his mother totally unable to care for him, Michael acknowledges that his biggest fear is that he will end up in a nursing home.

Speaking almost excitedly at the possibility of living in an independent facility for people with cerebral palsy and having access to 24-hour respite care, Michael again returns to the point that he simply cannot afford to pay for the kind of living situation that would give him the independence he wants. Michael contrasts these assisted living villages with some of the group homes that house people with more severe intellectual disabilities—“they remind me of nursing homes, a place where they just put you in.” A place that Michael says he fears.

As another illustration of Michael’s life and circumstances, consider this. With his computer degree from Pellissippi State Community College, he is qualified to work in his chosen field, which he wants to do. “I love computers, and I would love to have a job in computers,” but doing so would mean that his government benefits would decrease dramatically.  In fact, right after college, Michael did hold a good job, making “a lot of money” as a clerical assistant doing office work. However, because his job paid him “too much”, and he was receiving disability benefits on top of his salary, he is now—and for the past 10 years—paying the government back. He currently receives $657 per month from Social Security; this is roughly $150 less than he is entitled to receive because the government is still collecting on the overpayment from years ago. “Hopefully I’ll be done with that by this December, though,” he says.

These days, he works a few hours a week at a movie theater, so that he doesn’t disqualify himself from the state and federal benefits he depends on. He receives a small amount of funding from the CPC in Knoxville that, combined with his Social Security benefits, comes to a total of about $850/month, which hardly pays for the services he needs now—not to mention what he will need once he is alone. “There’s not a lot of funding for people like us…”

A story about how a local bus driver wouldn’t come into the entrance of Michael’s house to help get his chair over a raised part of the doorframe illustrated his need for financial assistance for home modifications. There were times when the bus drivers would leave because of the policy prohibiting home entrance. A new door would be a simple fix that would make navigating his wheelchair in and out much easier.

Because his physical disability does not exist alongside an intellectual disability or medical condition, Michael’s abilities put him at a disadvantage in receiving the kind of help that would improve his quality of life. He knows that these needs—transportation, respite care, home modifications—will only be compounded as he and other adults with developmental disabilities grow older and their parents can no longer provide care. Michael is acutely aware of what this means; “I know this sounds bad…but sometimes I wish I had muscular dystrophy or an intellectual disability because then there would be more services and money available.”

Thus, Michael and others like him throughout Tennessee—adults with developmental disabilities that are neither severe enough nor of the right variety to qualify for adequate state funding—fall through the cracks. Michael’s needs are not exorbitant, nor are they purely financial, and providing him with much needed services to improve his quality of life would be at a low cost to the state. If a state or local agency was able to provide Michael with enough funding to pay for a few hours of respite care per day, Michael would have much less reason to worry about what will happen when his mother is no longer able to care for him. Michael’s other most salient need is for reliable transportation. A caseworker might be able to connect Michael with a member of the community; someone that has the desire to help, the resources, and the time—but is simply unaware of the disability population in the community. Just as Jonathan said, connecting the needs with the resources seems to be the biggest gap—and the space into which Michael unfortunately falls.

 

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