Epilepsy awareness advocates and others raise awareness about disabilities
Toney Kincaid and members of the Epilepsy Association of North Carolina share information at festivals, fairs and events. {Photo Credit: Antionette Kerr/Davidson Local}
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International Day of Persons with Disabilities is honored every year on December 3rd. Davidson County based 501(c)(3) nonprofit Epilepsy Association of North Carolina is raising concerns and awareness for fellow epilepsy patients, research and treatments for those living in silence.
President Toney Kincaid of Thomasville said his mission for the organization is simple. “It is my goal to speak for those who cannot, stand for those who aren’t able, educate those hurting, bring education to the unlearned, give love and support to the despaired, be a light for those living in the shadows and be a friend to those who feel abandoned,” he declared.
According to the Epilepsy Association of NC, Inc, there are approximately 115,500 adults living with seizures and roughly 15,500 children in North Carolina.
Kincaid said, "We advocate for the rights of those with epilepsy. In North Carolina, those of us [with epilepsy] are the most discriminated and treated like second-class citizens. We try to get bills passed in our general assembly but they have never passed a bill with the word epilepsy in it. Our struggles continue but we will overcome with God’s help." The group is currently planning to honor the few state legislators who have been supportive of their cause.
Working on behalf of those with epilepsy, Kincaid noted that the diagnosis is sometimes used as a "catch all" for those experiencing seizures and strokes. According to the National Institutes of Health, epilepsy is a neurological disorder that causes seizures or unusual sensations and behaviors. It can last several years or be lifelong. NIH calls it “very common [more than three million cases per year in US].” There are no known cures, but treatments are available. Up to 1970, it was legal to deny people with seizures access to restaurants, movies and public buildings.
“In my life I had AVM [arteriovenous malformation] rupture in both sides of my brain at the age of 20 and they could only use metal rings to contain the rupture. I had a five percent chance of living but for some reason I did. I was left paralyzed, could no longer speak and with seizures,” Kincaid shared in a statement. “As I look back, I now see things in a different light. Then I started thinking, God, why did you forsake me for I love You and it is you I want to serve but You have denied me. After two hard years of physical therapy, I was able to walk and talk again but my young life was destroyed but I’m now challenged to find new ways of living with uncontrolled seizures.”
Kincaid said he was rejected by local churches. “Church told me to leave and never come back. One church, all members got up and stood by the wall with joined hands trying to cast out my demons from me. One church was having a revival and the minister knew me and he brought up how evil spirits were driven out of swine and they ran into water to drown themselves. I have too many churches to turn me away.”
Kincaid wasn’t surprised when he met resistance to the foundation, especially by churches. Despite how "common" the disease is, he points to misconceptions within the Christian community. “Epilepsy, being one of the oldest illnesses in the world, many churches preached epilepsy is a demon possession of the person. This is taught in some Davidson County churches.” Epilepsy of Davidson County started meeting at local restaurants until group members connected with Pastor Aaron Long of Paul's Chapel Church. “I met Pastor Long online and he invited us to come to his church to meet so we did not have to meet in a public place. He was the only pastor who would help us, and we had our first event at the church in 2017.”
Along with other advocates, Kincaid admitted the battle related to epilepsy has been painful and at times lonely. Today, they join other groups to raise awareness of the situation of people with disabilities so they can participate fully, equally and effectively in society.
