Kameron Beechum, 7, of Dickinson County, TN, is like most kids his age. You can find him indoors playing on his iPad when he’s not outdoors throwing a football. Kameron also has Charcot-Marie-Tooth disease.
Charcot-Marie-Tooth (CMT) disease is a group of disorders that affect the motor or peripheral sensory nerves, resulting in muscle weakness and atrophy as well as sensory loss. Symptoms appear first in the lower legs, then in the hands. Axonal abnormalities or abnormalities in the myelin sheath around the axon prevent the nerve cells in people with this condition from properly transmitting electrical signals. Specific gene mutations cause peripheral nerve dysfunction in CMT.
Although Kameron can walk independently, he occasionally uses a walker and wheelchair. His mother, Brittany, says that the school is not allowing Kameron to ride the bus this year, although he did so last year. As a result, he is missing days of school, and she has had to reduce her hours at work. Unfortunately, despite the fact that his individualized education plan or IEP specifies that Kameron qualifies for special transportation, the district refuses to send a bus to his house because of their steep and curved driveway.
Brittany says big trucks, including a set of firetrucks that arrived last year, travel up the same driveway weekly. The school has offered to reimburse her for gas if she drives Kameron to school. She appreciates that, but the family’s car is unreliable. It has broken down multiple times this year.
Struggles with public transportation are not uncommon for those with disabilities. In Boston, Massachusetts, riders say that the paratransit system is plagued with problems. Every year, the paratransit service is late thousands of times. In 2019, 8% of The Ride’s trips were canceled or arrived late. By last year, that percentage had risen to 14%, with Ride drivers missing about 17,000 trips and being late for an additional 89,000.
Additionally, in order to get to her job as a substitute teacher in Holyoke, Vera Perez Santiago, a Florence, Massachusetts resident, utilizes PVTA paratransit. In 2018, she was occasionally picked up two hours after work and dropped off an hour before her shift started.
Accessible vehicles can cost $30,000 or more. Many people cannot afford them, so they rely on public transportation. If public transportation is unreliable, it can leave people stuck at home.
People with disabilities should be able to access safe, accessible transportation when they need it. Kids like Kameron shouldn’t have to miss school. Adults shouldn’t have to miss work or social engagements. People with disabilities don’t need to watch the world go by in their homes. Accessible transportation allows us to be part of our communities.
Christensen, Dusty. “’Transportation Is Not a Luxury’: Paratransit Riders Air Frustrations” Daily Hampshire Gazette, Newspapers of New England, 25 Oct. 2018, https://www.gazettenet.com/PVTA-paratransit-riders-complain-about-service-21061219.
Curran, Kathy, and Jon Wells. “MBTA’s Paratransit Service ‘the Ride’ Plagued by Late, Missed Trips.” WCVB, WCVB, 18 Feb. 2022, https://www.wcvb.com/article/massachusetts-mbta-paratransit-service-plagued-by-late-and-missed-trips/39124647.
“Charcot-Marie-Tooth Disease.” NORD (National Organization for Rare Disorders), NORD (National Organization for Rare Disorders), 5 Oct. 2021, https://rarediseases.org/rare-diseases/charcot-marie-tooth-disease/.
DelPilar, Jackie. “Dickson County Mom Desperate for Ride to School for Son with Disabilities.” WZTV, Sinclair Broadcast Group, 22 Nov. 2022, https://fox17.com/news/local/dickson-county-mom-desperate-for-ride-to-school-for-son-with-disabilities-middle-tennessee-nashville-area-local-news.
DelPilar, Jackie. “Dickson County Mom Still Fighting for School Bus Access for Son with Disabilities.” WZTV, Sinclair Broadcast Group , 21 Nov. 2022, https://fox17.com/news/local/dickson-county-mom-still-fighting-for-school-bus-access-for-son-with-disabilities-crisis-in-the-classroom-middle-tennessee-nashville-area-local-news.