“You’re Actually a Warrior”
Marietta, Georgia (Senate District 33)
On a crisp Saturday evening in fall, in a cold warehouse in Canton, Georgia, Jeremy and Yvonne Williams are getting ready. The backstage area at Paranoia Haunted House is quietly buzzing with “talent,” the actors who populate the various scary rooms within the giant building's labyrinthine complex. Quiet slowly gives over to increasing amounts of chaos, as darkness descends outside, and the cast awaits the witching hour. It’s almost time to open the gates.
(Story continues below after slideshow.)
Jeremy Williams is a 31-year-old man with cerebral palsy living in Marietta, Georgia, with his mother, Yvonne. They live in a senior living facility, Ashton Arbor. Although it’s not always easy for Jeremy to live in this kind of situation at such a young age, there are definitely perks. “You know, elderly people have this kind of superpower with me,” he says, “and it’s awesome.” He does sometimes feel like he has to work twice as hard when he’s not at home to embrace and renew his youthful spirit though. “Sorry to make it sound so melancholy, but a lot of people don’t understand the struggles that we as people with disabilities have to go through daily. It’s a gift and a curse.” Jeremy comes back to this notion that his disability is both a gift and a curse over and over again. He sees it that way, and he wants others to as well.
Jeremy was born in the Washington, D.C. area, weighing just 2 pounds at 28 at weeks (12 weeks premature) due to his birth mother’s addiction to crack cocaine. Yvonne was already caring for Jeremy’s older brother, Samuel. When the birth mother came to Samuel's second birthday party, she told Yvonne about Jeremy and the fact that he had been born. Yvonne asked, “Are you asking me to take this child as well?” The answer was yes.
Jeremy had to stay in the hospital for several months due to the health problems that resulted from his mother’s addiction and his premature birth. He had seizures and respiratory problems that often are characteristic of premature infants. Yvonne was finally able to bring Jeremy home when he was 6-months-old. Samuel and Jeremy’s mother is off drugs now and still lives in the D.C. area. Jeremy and his birth mother are in touch, though not as often as Samuel is, and he makes sure to say how much he respects her. Jeremy is very glad that his birth mother turned her life around and that he’s had the chance to get to know both her and his extended family where she lives.
Although his brother was born under the same circumstances, Samuel does not have any disabilities. Does Jeremy ever feel jealous or angry about their differences? “I’m mostly jealous that he got to take piano lessons,” he says. The entire left side of Jeremy’s body is weaker, and Samuel’s piano teacher didn’t feel that she would be able to teach him. However, he took that "no," and used it as fuel for all his inspiration and creativity that’s come since.
When he was in middle school, one of his teachers made a passing comment that, when Jeremy stuck out his tongue, it reminded her of the band KISS. Having no idea of what this cultural reference meant, Jeremy went online and discovered a whole new world of music. Soon, he was exploring many alternative genres of music, including metal, funk, punk, and hip-hop. By the time he was in high school, Jeremy created his first metal band called The Mimes. Since then, Jeremy has learned how to emulate the powerful, gravelly voice that some of the music demands without overly taxing his vocal cords.
Jeremy does not have a Medicaid waiver, but he does have Medicaid, Medicare, and Social Security Disability Insurance (SSDI). He and Yvonne were interested to learn about the Medicaid waiver program through the process of their interview and would like to understand more about what the program might do for Jeremy. Given that Yvonne is now in her 80s, it will be time soon for them to begin planning for Jeremy’s next phase of life, one that will hopefully still provide him with economic and housing independence. “Shout out to therapists!” Jeremy laughs. He’s grown stronger over the years, thanks to ongoing work with physical and occupational therapists.
Back at Paranoia Haunted House, Jeremy and Yvonne are putting on their makeup in a ritual they’ve clearly practiced often, especially this fall, since Paranoia opened for the season in September. First, Yvonne lays out all the supplies on the table. She paints on Jeremy’s foundation of white makeup, then she fills in the details. They purchase most of their materials locally at Eddie’s Trick Shop in Marietta, but some things come from Sephora. “This is what we do,” Jeremy teases his mom. “This is how we get down!” The makeup process takes about 20 minutes. After Yvonne finishes his makeup, they switch, and Jeremy does hers. “Looking beautiful, mom!” he exclaims, as her scary clown face begins to emerge. Jeremy’s stage character, named Ebola, relates to a song by his band, "Konniption of Ymerej" (Jeremy spelled backward). Jeremy wrote the song in 2014 when the Ebola crisis in Africa was at its most dire. He was particularly alarmed by the moment when a man with Ebola was transported for treatment to the Centers for Disease Control and Prevention in Atlanta. It felt very close to home.
Jeremy says that it should seem obvious why he and people like him really love Halloween. “It’s a season when difference is celebrated,” he says, “when it’s OK to be a ‘freak.’” It doesn’t hurt that Jeremy’s birthday is in the month of October as well. Yvonne is not nearly as into Halloween nor metal music as her son. But she’s a devoted mom, and she goes along with these late-night performances, supporting his passions and whatever adventures they go on together.
Unfortunately, Jeremy did not have a very positive experience coming up through the education system. Because of his mobility issues, he was placed in special education programs alongside students who had more significant intellectual/developmental disabilities (I/DD). Both Jeremy and his mom feel that his educational experience left much to be desired. One of the reasons that Jeremy was placed in these programs is that he has learning differences, including dyslexia and dyscalculia (he mixes up numbers).
Although he did have some tutors who taught him tricks and mnemonic devices that helped him along the way, in another educational environment, he might have had teachers who were able to work with him better. Yvonne explains that Jeremy was not able to walk until he was around 8- or 9-years-old when an operation helped substantially. On one occasion in kindergarten, he witnessed another student actually being tied to a chair. In an effort to understand and rectify his disgruntlement with his experiences, Jeremy wrote a song called, “Special Ed Prison of the Mind.”
Because Jeremy only graduated with a special education diploma, they are now having to work on getting him a GED (General Education Development) test so that he can pursue his professional dreams. He’d like to get into computers, technology, music production or even the business side of music. Jeremy really believes music is something that heals, even if the music he likes isn’t the most relaxing to some people. He says that he can see music in color, and in turn, when he looks at the colors in a painting, he hears music from it.
This is the kind of thing that brings Jeremy back to the notion that his disability is both a blessing and a curse. How is it a blessing? He says that people with disabilities look at the world through their gifts, not their deficits. “My music is my walker,” he says, going on to explain that his creativity springs from the places where his life is hard, where he’s been held back. At the same time, he knows this isn’t a journey anyone would choose.
If given the chance to speak to a legislator, Jeremy would say, “We are all deserving of love.” He despairs over the moment when former President Donald Trump made fun of a reporter who had cerebral palsy by making a stereotypical hand gesture. “That was so hurtful,” he says. “Sometimes it feels like we are going backwards.” Additionally, Yvonne says that, if she were to sit down with her representatives, she would discuss the importance of transportation and accessibility. She talks about how difficult it is for both of them on walkers to get around on sidewalks that are shoddy and broken up everywhere. Referring to Jeremy's negative experiences with school, both of them say that they want legislators to address how the special education system is inequitable in its services and doesn't know how to serve those who have mobility challenges separately from those with I/DD.
As they continue to prepare for yet another night at Paranoia Haunted House, Jeremy explains that, inside the industry, people don’t call them haunted houses. Rather, they just say, “a haunt.” This is the second haunt Jeremy has worked at, and it’s his second year here. Paranoia is the area’s most popular and highly regarded attraction of this nature. In fact, Angel, the house manager, wants to be careful not to give away any of their trade secrets with behind-the-scenes photos. “We’ve got a reputation to protect,” she says about the large, seasonal attraction, which has been operating for nine years, now in its third location. Although Jeremy and his mom are not the first people with disabilities to work at Paranoia, Angel says they have the most visible disabilities of anyone the company has ever hired, and they’re very glad to have them there. As if on cue, one performer after another stops by to give Jeremy a backward hug as his make-up process continues. Nicole, who Jeremy says is “like his sister” stops by first. Then comes Mama Midnight, who also loves the hip-hop group Insane Clown Posse, just like Jeremy. The two of them bonded early on because of their mutual love of heavy metal and grunge. Then there’s Pressley with blue hair, who circles around for a hug several times. “I love you so much,” Jeremy says to Pressley, as the two lean on each other.
The atmosphere backstage is getting even more energetic as time ticks down for doors to open. This is closing weekend. People have brought cupcakes, chicken, Cajun mac-n-cheese, baked beans and an assortment of other items to create a lovely potluck for each other. It’s been a long run of weekends, Wednesday through Saturday night, where they arrive somewhere between 4:30-6 p.m. to prepare for the 8 p.m. opening. Doors do not close until the last person goes through sometime after midnight, so Jeremy and his mom don’t go to bed until about 2 a.m. on these nights. Fortunately, they have the freedom to sleep until 11 a.m. the next morning most days.
Given the chance to help people understand what his life is really like, Jeremy would talk about the importance of accessibility—how humiliating it is to have been carried up flights of stairs in order to play at a club. “We want to be treated like regular human beings,” he says. Sometimes he can’t understand why people with disabilities aren’t held in higher regard because, ultimately, they spend a lot of money that should count, whether that’s the money they spend on the equipment they need or other things. “We love fashion,” he says. “Even the money we spend to make our walkers cool is important.”
“If you wear makeup and you’re a dude, you’re actually a warrior,” says Jeremy, referring to ancient cultural traditions were warriors would paint their faces in order to prepare for battle. He talks about the empowerment he’s found in all his modes of self-expression, through music, performance and costuming. “Acting and performing are my life,” he says. If people choose to judge him for the ways that he chooses to show up, whether it’s how he’s dressed or his music and lyrics, Jeremy says, quoting his own lyrics, “Respect me. Don't judge me.”
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon & Kelly Blackmon