A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
According to the Centers for Disease Control and Prevention, 1 in 7 adults currently live with a mobility disability, making it the most common disability type. The percentage is even higher among adults over the age of 64. Adults aging with long-term physical disability may use mobility devices such as wheelchairs, walkers, and scooters. They can face difficulties in navigating the built structures and features of their surroundings such as sidewalks, buildings, and transportation systems. Studies have shown that inaccessible built environments contribute to mobility challenges for adults aging with long-term physical disabilities. However, few studies focused on adults aging with long-term physical disabilities and how the built environment affects their ability to participate in their communities.
In a recent NIDILRR-funded study, researchers wanted to learn about the perspectives of adults aging with long-term physical disabilities on the built environment in their community, including their homes and immediate neighborhood, and the role it played in their participation in the community. Researchers also wanted to explore how this group defined community participation as well as their perspectives on the effects of COVID-19 pandemic on their environment.
Researchers from the project Building Capacity to Improve Community Participation for People Aging with Long-Term Disability Through Evidence-Based Strategies, interviewed 20 individuals with physical disabilities who were enrolled in a larger study on fall prevention. The participants were between 45-65 years of age with an average age of about 60; had lived with a physical disability for five or more years with the average length of 22 years; and lived in the St. Louis area. Most participants used a mobility device such as a wheelchair or cane. The majority were women, and many lived in neighborhoods that were more socioeconomically disadvantaged than the average national neighborhood.
Based on the interviews conducted between December 2020 and August 2021, researchers found that the participants greatly valued community participation but found it difficult to engage in due to barriers in the built environment. Participants felt that the built environment was not designed or maintained with people with disabilities in mind. Participants discussed several components of the built environment impacting their ability or desire to participate in their community as follows.
- Perceived lack of safety in their neighborhood: The participants indicated that issues such as poor street lighting, the sound of gunshots, speeding cars, and the possibility of their wheelchair getting stuck in the broken sidewalks hindered their community participation. On the other hand, connecting with family and neighbors, being able to see the street from their house, lower noise levels, and pleasing neighborhood landscaping made the participants feel safer about participating in the community.
- Lack of access to public or personal transportation: The participants indicated barriers such as inaccessible public transportation including no local bus stops, long wait times, or inconvenient operating hours. Participants who drove experienced difficulties transferring themselves from their mobility device to their car and finding parking spots.
- Physical barriers outside and within buildings: The participant pointed to outside barriers such as neighborhoods with no or dilapidated sidewalks and sidewalks that lacked curb cuts, making it difficult to leave their neighborhood block. They also indicated barriers inside community buildings such as inaccessible bathrooms in grocery stores and lack of handrails and ramps for wheelchair users. Some participants described being unable to leave their homes for extended periods of time because their apartment buildings lacked ramps, or they needed assistance with stairs.
Participants described community participation to be meaningful social interaction that included both doing for others, such as volunteering at food banks, group exercise classes, or doing with others, such as going to the movie theater, going out to eat at restaurants, and attending church. However, participating in the community took time and planning to ensure they could get to and access any event spaces.
Finally, some participants reported that the COVID-19 pandemic and associated safety measures impacted their access to resources, spaces, and supports which in turn reduced their community participation. Some participants mentioned they found certain services such as home deliveries of food and groceries during the pandemic to be very helpful. Still other participants mentioned very little change in their daily lives from before the pandemic, as their inaccessible neighborhoods made them remain indoors and unable to access the community.
Overall, the results showed that the most important attributes of a built environment were that it was safe, inclusive, aesthetically pleasing, and accessible. The authors noted that this study provides the perspectives from real-life experiences of a diverse group of adults with long-term physical disabilities, confirming previous studies’ findings that inaccessible built environments impact participation in the community. The authors noted that not only is traveling to activities difficult but participating in these activities can also be difficult. These difficulties may lead to feeling unwelcome or disenfranchised for people living with long-term physical disabilities. The authors noted that barriers such as vandalism and firearm violence also contributed to concerns of safety, and that those barriers may be related to participants living in low-resourced and urban neighborhoods. The authors also suggested that, as people age, their social networks may become smaller and those aging with disabilities can experience longer periods of social disadvantage. Both factors might further contribute to feelings of isolation and concerns about community safety.
The authors note that some of the barriers mentioned by participants were modifiable. For example, streets, sidewalks, and transportations options can be improved through advocacy and better policy decisions. They suggested that policymakers, community living advocates, and other stakeholders may want to travel through neighborhoods and community environments together to identify areas that need improvement. Adults aging with physical disabilities and others with disabilities may want to learn more about the process of urban planning and policy and share their knowledge and experience to create more inclusive communities.
To Learn More
Out and Aboutis a program that supports Centers for Independent Living staff in promoting participation among members with disabilities in their communities. By learning what consumers want to do and by helping them to set goals and achieve them, CIL staff can facilitate consumers’ breaking down barriers to get out and about to do what they want, as much as they want, in the community.
The Research In Focus series highlighted additional research on barriers to community participation:
- For People with Serious Mental Illness, Dissatisfaction with Housing May Contribute to Loneliness
- For People with Mobility Disabilities, Stepped Entrances and Exits May Limit Participation in Social and Recreational Activities
- Three Decades After the ADA, Many Local Governments May Still Not Have Strong Plans to Remove Pedestrian Access Barriers
- Urban and Rural Residents with Disabilities May Need Different Supports to Stay Socially Connected to Their Communities
To Learn More About this Study
Desai, R.H., Hamlin, E., Eyler, A.,Putnam, M., Stark, S., Morgan, K. (2023). Identifying built environment factors influencing the community participation of adults aging with long-term physical disabilities: a qualitative study. Disability & Society. This article is available from the NARIC under Accession Number J92517.