A new report from Cure SMA says traveling by airplane is still a challenging endeavor for people with disabilities, including those with spinal muscular atrophy (SMA).

In a Feb. 16 announcement, the organization introduced the report: “The Good, But Mostly Bad and Ugly of Air Travel for Individuals with Spinal Muscular Atrophy.”

In the executive summary, Cure SMA noted that many people and families living with SMA “avoid or only reluctantly travel by airplane” despite air travel being most obvious means of covering long distances. That reluctance springs from “uncertain, unsafe, and unsatisfactory past experiences” that include wheelchairs that are damaged or lost while in airline custody; injuries sustained while transferring into or out of airplane seats; inaccessible bathrooms on board planes; and “an overall experience that is stressful, humiliating, and sometimes, dehumanizing.”

The report was created from the travel experiences shared by adults with SMA and families who have children with SMA. Recommendations in the report include better training and equipment for airport and airline staff; an improved and dedicated boarding process that provides adequate time for people with SMA to transfer into their seats and store medical equipment; increasing seat size and pitch to facilitate safe transfers; requiring larger, universally accessible bathrooms on board; adding wheelchair securement systems and containers in the cargo hold of planes; and allowing wheelchair users to remain in their wheelchairs while aboard the plane, a concept supported by Department of Transportation Sec. Pete Buttigieg. 

The report also includes first-person anecdotes from people with SMA and their families about traveling by air.

Read the report here.