Publications
He's never tasted food, spoken or taken a breath unaided.
Born without a jaw due to a rare congenital disorder, Joseph Williams (41) was accustomed to being stared at and mocked mercilessly.
Joseph, who was given up for adoption by his birth mother when he was a baby, assumed he’d live his life as a single man.
Bullying, loneliness and depression were all he knew – until he started believing in himself and realised he too deserved a chance at love and happiness.
“I had such low self-esteem and felt worthless, so dating was hard for me. But once I started changing my mindset, I ended up finding my wife.”
Joseph has a condition known as Otofacial syndrome, which is caused by a mutated gene and means he has no mandible and no lower half to his face.
The mandible is the largest bone in the human skull. It forms the lower jawline, holds the lower teeth in place and creates the chin.
A few days after he was born, he underwent multiple operations as surgeons constructed a jaw for him using bone and skin grafts.
“But as I grew my body rejected it and it was unsuccessful,” he says.
Joseph is sharing his story so he can tell others who struggle with being different that they too deserve joy in life.
The Chicago-based welder’s life changed when he met Vania (39), the woman he would go on to marry, at work in 2019.
“We got talking and she admitted thinking I was a gang member and that that was probably how I lost my jaw,” he recalls, speaking in sign language.
“We were friends at first but we eventually started dating and fell in love.”
Joseph never expected to get married, let alone fall in love with someone who loved him back, he admits – but now, two years after they walked down the aisle, he knows everyone has a chance at their happily-ever-after.
Joseph and Vania live a full life, going on long road trips, visiting cities in the US and enjoying their time together.
“I understand I’m different and that some people will think I’m ugly and won’t accept me,” he says. “But I’m still a person who has a heart, feelings and a brain. I should be treated with respect, just as anyone else should be.”
He was one of a twin but the other baby died shortly after birth. Joseph wasn’t expected to make it either – his condition left him severely disfigured and unable to suck, cry or breathe freely.
A tracheal tube was inserted in his throat to help him breathe and, without a mouth, tongue or teeth, a gastrostomy tube was inserted in his belly to give him the nutrients he needed.
Joseph still has the tube in his throat and stomach to keep him alive.
He was a baby when he was adopted into a loving family who knew caring for him would be a full-time job. He learned to communicate using sign language from the age of two and later found other ways to “speak”, such as typing what he wanted to say into his phone and showing the words to the person he was talking to.
But life was hard for Joseph.
“As I was growing up, my family tried to protect me by telling me I couldn’t do this, and I couldn’t do that,” he says.
He became reclusive and had a difficult time accepting his condition, especially because of all the bullying. People were also afraid of him, he adds. “They ran away and hid from me.”
This made him shy away from people and he also became depressed and suicidal.
But Joseph, with his wife by his side, is no longer allowing his appearance to prevent him from living his life to the full and trying to educate people about his condition.
“Sometimes people stop what they’re doing to stare at me and it gets annoying,” he says, recalling an incident when a stranger stopped his car and turned it around just to stare at him.
“I just wish people would speak to me and ask me questions rather than look at me like a deer in the headlights.”
He believes “there is a reason that God made me like this”, which has helped him overcome many of the tribulations he’s faced.
“He gave me this load because He knew I could carry it.”
Joseph also uses music as a source of inspiration. Going by the stage name DJ Slam Jo, he uses his love of melodies and drumming to express himself.
“My dream is to become a DJ one day. I sometimes struggle with communication, but music is a way for me to express myself.”
Something that has helped Joseph accept himself is coming to terms with the fact that “there is no reason why I was born this way”.
“I just need to show people who I really am. Being born without a jaw has given me a different outlook on life and it has made me who I am today.”
READ MORE | Love conquers all: At 96 cm tall, Jade is expecting her second baby with her non-binary partner
Jospeh has had no interest in undergoing further operations to have a jaw constructed – and spurring him on is the story of another man born with the same condition who regretted the facial reconstruction surgery he had.
Irishman Alan Doherty was a teenager when surgeons built a jaw for him, but he later questioned if it was worth it.
Alan underwent a series of surgeries between 2008 and 2009 when he was 17.
Surgeons used a section of his hipbone, which was carved into the shape of a jaw, and implanted it in his back to grow nerves and tissue.
The bone was removed and implanted in his face during several intensive procedures and extra tissue was used to craft a chin for him.
“The most important thing for Alan was to stop people staring at him. He hated that,” said Paul McBride a good Samaritan who helped Alan get donations for his surgery in the US.
“Like any other teenager, he cares about what he looks like. To him, it’s more important than eating or talking.”
However, a year after his community rallied to help him raise funds for the operations, Alan revealed he wished he’d never gone under the knife.
“Shortly before we came home, we were informed the chin and jaw will all settle down through a period of six months. Now that six months are up and we don’t see any difference,” he said at the time, communicating with a voice-activated keyboard.
Alan said he’d been left with facial scarring and extensive scars on his back and groin where bones were extracted and re-grown.
“I didn’t expect to be all destroyed, all messed up. If I was made aware of how my back and jaw would turn out before I went through any of the procedures, maybe I wouldn’t have gone through with the operations.”
Knowing all this, Joseph is pleased he’s learned to live with himself and find the happiness he has always striven for.
