A young boy in New York may have to attend a school miles away from his home and friends because of his handicap. John Dilgen is 10 years old and his new school is not wheelchair friendly. So instead of going to IS 34 with his friends from PS 1, John may have to go somewhere else.
John has epidermolysis bullosa, a genetic disorder that causes painful blisters to form on and inside his skin at the slightest irritation, forcing him to use a wheelchair often. “It is very hard,” John said. “I have tons of blisters all over my body. It’s very painful every day.” His skin is so sensitive that John takes a bath every other day and unwrap the bandages that stick to his sores before he gets into the tub. John recently rode a ski bike on a ski trip, and it left him so sore that he couldn’t move.
Very often, John gets blisters around his feet, and he is too blistered to walk. When this happens, he has to use a wheelchair to get around. John is supposed to attend Totten intermediate School 34 when he starts sixth grade this fall. However, John and his parents recently learned that because of his handicap, he would not be able IS 34. The intermediate school, that shares the same school yard as PS 1, has four floors but no elevator.
Now John must attend another school, even though IS 34 is across the street from his house. He would have to take a bus to IS 75, which is several miles away, and John admits that a regular bus trip could be dicey for his condition. If John traveled by bus with no air conditioning, he would sweat, causing his blisters to itch. This would make him scratch and cause more uncomfortable and painful blisters.
There are many other handicapped students from PS 1 who are facing the same fate. Without an elevator to help those who are confined to a wheelchair, they would have to find a new school to attend. The Dilgens family has started a local campaign to have an elevator installed at PS 34 before John would arrive in September. They have collected over 2,000 signatures on a petition and are bringing up the issue with the School Construction Authority.
As of right now it is not looking good for John. Deputy Chancellor Kathleen Grimm said there is no money in IS 34’s budget to install an elevator this year. Grimm did say, however, that four of Staten Island’s middle schools are equipped with elevators, and bus transportation to each one is provided for disabled students. The family is looking for alternative solutions, such as stair lifts, so John can continue his education with all his friends and does not have to take a bus to school.