Rolling with the Changes: A Message of Hope and Inspiration
Author: Linda S. Hopkins | Photographer: M.Kat Photography
David Jones sits in his driveway on Hilton Head Island on a beautiful November day.
Every day, as we rubberneck our way through the headlines, we read and hear news accounts of lives changed in an instant. We may be momentarily shocked, saddened, outraged and perhaps a bit reflective. We might be curious or feel sorry for the victims. But mostly we go on about our business, because it’s not us. Until it is.
On September 1, 1997, 24-year-old native Hilton Head Islander David Jones Jr. was celebrating Labor Day and his nephew’s birthday with his family when his instant came. Feeling “fine” all day, the strapping commercial fisherman was on his way to pick up his infant son Devante when he was overcome by a fiery heat radiating through his body. Nerves ablaze, he turned around and headed back to his mother’s home where the party was in progress, dousing the invisible flames in an icy shower and lying down. Still planning to return to his shrimp boat for work later that evening, within 45 minutes he was at the ER instead—paralyzed from the shoulders down—the victim of a rare viral infection, transverse myelitis, which attacks the spinal column. Although the cause was never determined, the effect has been a wake-up call with a ripple of hope and inspiration for all.
Today, Jones sits upright in a wheelchair he operates by blowing through a straw. His phone rings. Normally, he would answer using voice control and Bluetooth technology. He lets it go to voicemail as he continues telling his story.
“I went from 100 percent independent to 100 percent dependent within 45 minutes,” he said from his Mitchelville Rd. home—the house where he grew up and where he continues to live, thanks to early encouragement from his family. After rehabilitation at MUSC, a decision was made that he would come home instead of being put in an institution. How to go on became a matter of finding adequate physical assistance.
According to Jones, his mother was his main caregiver for several years. “I did get some state help after about a year and a half. We fought our way through it,” he said. His mother has since “gone to be with the Lord,” and Jones now has 112 hours of professional care per month—not completely around the clock, but enough to make it possible to stay at home.
While he once thought a nursing home might be the best option, today, Jones cannot imagine life in an institution. When he was unable to get around, friends organized a campaign to help buy a van for him. Prior to that, he moved around the bike paths in his chair. “Once I obtained the van, it really changed my life again—shifting another gear,” he said.
Refusing to be defined by his disability, Jones said the only time he thinks about being paralyzed is when he’s lying in bed. Otherwise, he is busy living, working, hanging out with friends and participating in community events whenever possible. “I know a lot of people on the island, and I want to let people see that I am able to live my life and inspire someone who may be having a bad day. I’m able to go about my daily activities, and I still can do them with joy.”
It wasn’t always that way….
An inside job
Physical complications notwithstanding, finding a reason to go on required a deep spiritual excavation. “I’m somewhat stubborn,” Jones said, admitting that he experienced several years of sadness, anger, denial and bitterness. “Not so much against God. I am alright because of Him. Once I began to strengthen my relationship with Him, things began to turn around, not only physically, but emotionally.”
The pivotal point came in 2001 when Jones made a conscious decision to help himself. “I just decided these are the cards I’ve been dealt, and this is the hand I’m going to play. I chose life, and I might as well live it the best way,” he said. “My mother came in one day, and I said, ‘Open the blinds. Pull the curtains back.’ I’m so happy that she was able to teach me to go about life and not worry about what people say.”
His son was another source of inspiration. “He [Devante] only knows me in the chair,” Jones said. “There was a picture of me holding him before [the paralysis]. When he saw that, it helped turn me around—to show him that we encounter things in life that we may not be able to control, but we don’t quit.”
Not only did Jones decide to live his own best life, but to encourage others to do the same. Joining a local group and speaking to bring awareness about disabilities, he later applied to the South Carolina Rehabilitation Department in Beaufort, asking them to put him to work in some capacity. One of the counselors who came down from Columbia mentioned the South Carolina Statewide Independent Living Council (SILC).
“I consider myself a very outspoken person,” Jones said. “She [the counselor] saw the passion that I have about wanting to make it better for other people and put my name in to be on the council.”
Appointed by the governor in 2011 and reappointed in 2014, Jones had served two and a half years when his colleagues suggested that he become chair—a position he has held for the past three and a half years. His term will end in January of 2017. He plans to take a year off and then reapply.
“I’ve been through a lot of adverse things. It is now my focus to help make the road less bumpy for others coming along,” Jones said. “I’ve been able to learn bureaucracy—how and why some things are approved and some are not. I try to lessen the bureaucracy so that people who need services or things to help them have a better quality of life.”
Along with his fellow council members, Jones works hard to help all South Carolinians with disabilities. “We have multiple centers throughout the state where people can go and receive training and learn to be as functional as any able-bodied person,” he said.
Mr. Jones uses a blow tube to back his chair into his handicap-accessible van
According to the American Disabilities Act (ADA), which became law in 1990, every place should be accessible to a person with a disability. “Unfortunately, that hasn’t always happened—not only here, but nationwide. Every building should be accessible to me, but a lot of older places that are grandfathered in get a pass. To accept an invitation to a venue, I have to have someone check it out for me,” Jones said, citing accessibility and transportation as the two greatest obstacles for disabled people.
A message that matters
In addition to being a voice for the disabled, Jones is a conduit for education. “I want to be here for kids who may come across some kind of adversity in their life. It can really do some damage. It hurts when people stare or make rude comments. It’s been a big part of the whole journey for me.”
Jones’s message is for everyone, but his target audience is young people. “I teach them to use the right perspective. I had to learn it myself. If you are able to change the perspective, you can change your situation,” he said. “We all have a disability of some sort, but some people like myself are stigmatized as being different. If I could snap my fingers and change one thing, it would be for the public to understand that we are all the same—we all have something to contribute, and we all matter.”
While there is presently no cure for his condition, Jones stands firmly in his faith. “I’ve always had a desire to walk again. I will continue to keep that alive, not only for me, but for my son and other people who think they may be in worse situations,” he said. “With hope, anything can be achieved.”
Enabling the Disabled: About the SILC
The South Carolina Statewide Independent Living Council (SILC) is a non-profit organization dedicated to promoting Independent Living for people with disabilities throughout the state. SILC members are appointed by the governor of South Carolina. Federal regulations require at least 51 percent of SILC members be people with significant disabilities. The South Carolina SILC believes that people with disabilities should be accepted, respected, valued members of society; have equal opportunities to live, work and participate in their communities; and be expected to be productive, active and responsible citizens.
The SILC promotes inclusion in all aspects of life for South Carolinians with disabilities with the independent living philosophy of consumer choice, peer support, self-help, self-determination, equal access, and individual and systems advocacy.
Access a list of valuable resources for people with disabilities, find membership information, needs assessment forms and more at scsilc.com. For more information, call (843) 217-3209 or toll free (800) 994-4322.