Man Coming to Grips with Disorder

Our featured person this week wanted to be known as “Oliver” and his full identity hidden because of possible repercussions. He is in his 20s and lives somewhere in Arizona. Oliver was born with a form of spinal muscular atrophy, which the National Institutes of Health defines as a genetic disorder affecting control of muscle movement. It leads to “weakness and wasting of muscles used for activities such as crawling, walking, sitting up, and controlling head movement.”

Said Oliver, “I get weaker as I age. I need help now getting dressed and bathing and going to the bathroom. For the last six years, I’ve used a power wheelchair. Before that, I had a manual wheelchair (that people pushed me around in) and a walker. My biggest challenge is accepting my diagnosis and coming to terms with the progression of the disease and the loss of my abilities as time goes on. Sometimes, I get depressed.”

Oliver said he had a difficult time emotionally getting through a private school when younger. For example, one of his teachers, who was also the school principal, absolutely refused to accommodate Oliver by moving a classroom from an inaccessible area to one more accessible, which forced a relative of Oliver’s to purchase an expensive “stair climber” so Oliver could stay at that particular school. Prior to that incident, all other teachers had accommodated Oliver.

On another occasion, the same teacher forced Oliver to stay behind in class while other students were allowed to attend a physical education event in another location blocks away. Oliver asked a different teacher and others why. They confronted the teacher, who said it was easier to leave “Oliver” behind because he used a manual wheelchair and classmates would have had to push him. No classmate had ever complained about pushing Oliver.

Finally, said Oliver, “A boy in another grade had a learning disability. He would stutter and draw out his sentences. One day, this same teacher, in front of the boy’s class, went so far as to do a (mock) impression of the boy talking. I was horrified.”

In advising teachers on how to treat children with disabilities, Oliver said, “If there’s something a student doesn’t understand, don’t make a big deal of it or punish him. Work with the child outside the classroom at a different time. Treat people with disabilities the same as anyone, but don’t be surprised if they need special help.”