Johnson suffers from Arthrogryposis Multiplex Congenita, or AMC for short. In an assembly for all fifth graders, Johnson shared what it is like to not only to have this condition, but how to talk and interact with him about it.
The American Association of Neuromuscular & Electrodiagnostic Medicine states that AMC is a disease that decreases flexibility of the joints.
Symptoms differ drastically from person to person, including stiff joints and muscle weakness, but the areas that are most likely to have lack of movement are the shoulders, elbows, wrists, hands, hips, knees and feet.
“I told them that I have a rare disorder and that my arms and joints can’t work so my arms just stay like this; they can only go this far. And my hands are crooked a little bit. I told them I eat differently. I can’t take my hand and grab something. I just lean over and eat like this without using my hands," said Johnson.
For Johnson, his experiences with other kids have not always been positive. Hearing whispers and seeing looks his way because of his condition was the norm for the kid who hopes to play power chair soccer for team USA and one day be a sportscaster.
The fifth grader's openness about his condition has helped him to become a part of organizations and participate in hobbies with other classmates, which his mother Mariah Gifford says has been amazing.
“He’s in student council already. He’s involved with music. He’s in math tutoring, and I’m excited that he’s even opened up to receive that help because he wants to be very independent. “We’re glad to have found Birdneck. We love it,” Gifford added. “We had other friends that we met in military housing whose kids came here and they recommended it," said Gifford.
Johnson said to other students that his message is to "treat people with disabilities the way you want to be treated."
“They can’t always do stuff like you. They may have a little bit of a struggle about some stuff that they really, really want to do but they can’t do it because their joints or their bodies can’t work as well,"he said. "Don’t say something mean because it can make them feel really bad about it and make them feel like they’re not as cool as the other people. So, always be thoughtful about how you’re going to say stuff to them. Be nice about it.”
