‘I’m not disabled, just different’

I saw Joseph O’Brien on a skateboard in his Fatima College uniform on Monday while driving on Bellesmythe Street, Woodbrook. He moved so quickly on the pavement that I didn’t notice he was missing his left arm. What amazed me was his height, which I estimated to be three feet. Intrigued by his appearance and quickness, I arranged to meet him for an interview on Thursday.

O’Brien was born with a rare, non-hereditary birth defect called proximal femoral focal deficiency (PFFD), which affects the pelvis, particularly the hip bone and the proximal femur. Some of the problems associated with PFFD are discrepancies in leg length, instability of the hip, contractures of the hip and knee, unequal level of the knee, short stature and associated anomalies.

O’Brien said he did not even know the medical term for his condition. “I was born like this, just a little shorter though,” he said jokingly. His mother Samantha Rochard, who was also present during the interview at her workplace at Coco Lounge, Ariapita Avenue, Woodbrook, intervened and said it was a “multiple set of complications.”

O’Brien is 39 inches, has one arm, a cleft lip, was born with two palatine uvulas, (the conic projection from the posterior edge of the middle of the soft palate), eight toes and is quite a joker. His right arm and upper body are developed. O’Brien isn’t bothered by his physical challenges. He makes do with what he was given. He keeps active by playing small-goal football, cricket and basketball at his school. He said he cannot run on a big playing field.

His mother said, “The problem with his legs...they call that multiple proximal femoral deficiency. “After a while the doctors gave up trying to diagnose what it was and said let’s just see how we could help you and give you a better quality of life.” He uses his hand to aid him in moving around and also to operate his skateboard.

The calluses on his hands are evidence of its constant use. He said his hand was like a crutch. He insisted he didn’t want prosthetics because he wouldn’t be able to play games on his Playstation—he uses his feet. Is he disabled? Joseph doesn’t think so. “I can’t clap...that was kind of a joke, eh,” he said wittingly, when asked what were some of the things he couldn’t do. He also cannot run, tie his shoelaces and reach some light switches in his home.

For him, it’s all about moving forward and never moping over what can’t be done. The 17-year-old Form Four student is studying eight CXC subjects, loves technology, writing poetry and lyrics, and hopes to one day become either a software engineer or a translator. He wants to drive but is unsure Licensing Office will take him seriously. O’Brien has five younger siblings.

Mom: His survival was important
After his birth, his mother spent two years in limbo trying to diagnose his condition. O’Brien had surgeries to correct the uvulas on the inside and outside of his mouth. He also had three surgeries to correct his spinal column. He has two scars on either side of his forehead from having screws placed in his skull.

“He basically had a halo hanging around his skull for a while and he had to move around for about four months with a pulley system on his head with free-swinging weights,” Rochard said. At the time, O’Brien was ten and a pupil of Holy Name Preparatory School. He was also provided with a walker and a wheelchair. His mother said each week five-pound weights were added “to stretch him out.”

O’Brien’s spine was S-curved. In the second stage of the surgery, she said doctors had to cut some of his tendons and muscles to straighten him and the final stage, he had three rods placed in his spine so he could remain straight. He developed the S-curve from moving around because of the lack of muscle on his left arm. O’Brien said he learned to walk when he was four.

Rochard said, “Everything was curving like the letter S, to the point where it started pushing his heart and one of his lungs up to his chest, so he had one lung getting squashed to one side and his heart was being pushed straight up...you could actually see it (heart) beating.” Rochard said when he was born she asked many questions but then realised what was important was his survival. She said at some point O’Brien had to survive “in this world.”

With time, he was able help himself, although he wanted to attempt what seemed impossible—cooking. She said, “So, how do we get him to cut up cucumbers...because at one time he wanted to cook. “How do we teach him to crack an egg?” They both laughed. She said her son has since taken over and began figuring out things for himself.

I’m not a ‘disabled’ person
O’Brien said each person was born different because “not everyone can be the same.” He said, “When you see someone who is different, you think they cannot do certain things and it’s not really about being disabled because I can do some things that other people cannot do, so I won’t say that I am (disabled).” He dislikes pity and the way people stare at him so he stares back.

“So am I a TV? What are you staring at?” he said in response to people who give him “the look.” He said people often sympathised with him saying they could imagine how he feels, however, “I can’t imagine how it feels to be a normal working person. I cannot...” He prefers that people just keep quiet and save the pity. He said they lacked understanding and assumed he was helpless. Oftentimes, he said, he’s asked the most ridiculous questions like how does he use the toilet.

He said there were other people with physical deficiencies but he believed he was more fortunate than them because of what he can do. “Certain times when you really sit and think why you were made a certain way...the answer always comes...why was anybody made the way they were? “Why was that person made shorter than that person?

“Just accept the fact,” he said. He said parents with physically-challenged children should encourage their children and let them develop their talents and potential. He said if they remain locked up, they will never know what they can do. “I know there are others out there who aren’t as fortunate as I am.

“Their parents have them locked up and boxed up in a room, they can’t go outside or they are ashamed or whatever. “That’s just terrible,” O’Brien said.