ALS families frequently face challenges when visiting offices like the Pennsylvania State Capitol in Harrisburg, PA. Parking is inconvenient, elevators are too small for wheelchairs, hallways are narrow, and caregivers end up frustrated and exhausted.
Even with these challenges, ALS patients and caregivers continue to make the journey to the State Capitol because nothing will stand in their way of making lives better for those living with ALS.
Recent news articles have highlighted the significant problems with accessibility in the Pennsylvania State Capitol.
ALS United Mid-Atlantic advocates do not need a news article to tell them what they already know: buildings are extremely challenging for people with ALS to navigate, which threatens to diminish the voices of ALS advocates and discourage participation from people with ALS and other disabilities.
“When advocating at the Harrisburg Capitol, gaining access to the elevator alongside my husband can be difficult due to space limitations,” said Lura Sawyer, who is a frequent advocate alongside her husband and Air Force veteran Peter Sawyer. “Occasionally, we require assistance to access the elevator for exclusive use, which can be inconvenient. This keeps us from feeling fully integrated into the Capitol community alongside individuals with no difficulties navigating the building.”
“The legislators we meet in Harrisburg are personally very kind, but the building poses many challenges,” said Eileen Miller, who is a regular advocate in Harrisburg with her husband Paul, who has been living with ALS for over a decade. “I’ve needed help from social workers and other staff to help my husband walk up and down two steps into a legislator’s office because of the way the building is designed.”
“Just getting into the building in Harrisburg is difficult,” said Marc Schefsky, a person with ALS who advocates with his wife Lori. “The entrances are not clear for those in wheelchairs and any remotely bad weather makes getting into the Capitol tough. The bathrooms are also very narrow and frustrating for both patient and caregiver.”
Your ALS stories are powerful. ALS United Mid-Atlantic is collecting testimonials from the ALS community to share with lawmakers to encourage them to take accessibility issues more seriously and to take actions that make the Pennsylvania State Capitol easier to navigate.
Governor Josh Shapiro has announced a new study to improve access and mobility at the State Capitol.
This study is scheduled to be completed by Spring 2025. If you have ever participated in ALS advocacy in Pennsylvania, your stories are essential to encourage smart changes to make the buildings more accessible for everyone.
To learn more about participating in ALS advocacy, visit here.