“Patiently waiting”: How do non-driving disabled adults get around in rural America?

Abstract

Most mobility needs in rural America are primarily met via driving. Yet many disabled adults cannot drive. Lack of adequate public transportation in rural areas exacerbates transportation-related disparities. We interviewed 33 non-driving disabled adults throughout the U.S. to explore how they get around in their rural communities. Research questions primarily focused on the relationships between transportation, community participation, healthcare access, and social capital. We used thematic analysis to identify themes related to our research questions. In general, interviewees described a dearth of public transportation options. Even if public transit were available, other issues limited use such as inaccessibility, expenses, or schedules and routes. Many participants also described getting rides from others. While this was a critical component of many individuals’ daily travel, it also introduced a layer of dependency and social pressure that otherwise would not exist with more independent means of transportation. Policy implications include improved public transit funding and strategies to promote universal auto access.

1. Introduction

Travel outside of the home is important for all people because it facilitates access to their communities and is associated with greater well-being.^1–3 Most people use some type of transportation to get to their healthcare appointments, go to work, pick up groceries, shuttle children to sports practice, attend religious services, meet friends for coffee, and many other social and economic activities. We use the term “community participation” to encapsulate these types of activities and social roles that form the basis of community life.^4,5

In the automobile-oriented architecture of America,⁶ mobility needs are often met via driving.⁷ For example, in 2021 over 75% of trips to work were made by driving alone.⁸ However, for the millions of Americans that do not or cannot drive, lack of transportation can act as a major barrier to community participation and economic opportunity. American households without vehicles have experienced declines in income over the last 50 years⁶ and take half as many trips and shorter trips⁹ than households with vehicles. Indeed, Murphy et al.¹⁰ found car ownership to be a significant factor contributing to transportation insecurity. This issue is particularly salient for disabled Americans, of which approximately 28% have given up driving (note: this may or may not include people who have never driven).¹¹ This is important because lack of mobility (i.e., transportation) can limit access to employment,¹² lead to missed medical appointments,¹³ and limit social connections¹⁴ and community participation.¹⁵ In fact, approximately 3.6 million Americans with disabilities never leave home due to travel related difficulties.¹⁶ More than 30 years after the Americans with Disabilities Act (ADA) was signed into law people with disabilities still cite lack of transportation as a major barrier to accessing healthcare and community participation.

This issue is compounded for people with disabilities living in rural areas of the United States (U.S.), where public transportation is often lacking.¹¹ For example, approximately 40% of rural Americans do not have access to public transportation.¹⁷ We use the term “public transportation” to encompass all modes that are available to the general public such as fixed-route buses, paratransit, taxis, and rideshare. Additionally, rural places with high rates of disability are often associated with high rates of car-lessness. For instance, in Wolfe County, Kentucky, where the disability rate is over 35%,¹⁸ more than 20% of household do not have access to a private vehicle.¹⁹ This intersection of disability and rurality perpetuates transportation-related disparities.

1.1. Rural transit funding

Rural areas receive less transit funding on a per capita basis than urban areas. A 2005 report from the U.S. Department of Agricultural Economic Research Service found that less than 10% of federal funding for public transportation goes to rural areas,²⁰ yet rural residents account for approximately 20% of the total U.S. population.²¹ While most rural Americans rarely use public transit, some depend on it, especially those with disabilities. Given that disability rates are higher in rural areas,²² and disabled people are less likely to drive,¹ the need for improved rural transit is apparent.

Two funding mechanism sponsored by the U.S. Federal Transit Administration provide resources to support the transportation needs of rural and disabled residents. The Enhanced Mobility of Seniors & Individuals with Disabilities program (§5310) provides funding to support the transportation needs of people with disabilities and older adults (65+).²³ The Formula Grants for Rural Areas program (§5311) provides funding and technical assistance to support public transportation in rural areas with populations less than 50,000.²⁴ According to an analysis of 2019 National Transit Database (NTD) revenue reports,²⁵ rural counties received approximately 5% (~$16 million) of total §5310 funding and 49% of §5311 funding (~$376 million). Over half of rural counties, including more than 3.5 million people with disabilities, did not report funds from either of these programs.²⁵ We should note, however, that the NTD reports likely undercount §5310 funds because not all programs that receive these funds are required to report to the NTD. Nevertheless, it is clear that rural transit is not funded to meet demand^26,27 as cash-strapped agencies struggle to provide adequate services.²⁸

1.2. Disabled non-drivers

Despite Americans’ reliance on personal automobiles for mobility needs,^6,7 many people, particularly those with disabilities, do not or cannot drive. This may stem from the financial barriers associated with owning and maintaining a vehicle or the cost of purchasing a modified vehicle, which are usually more expensive than non-modified vehicles.²⁹ It may also be unsafe for some disabled people to drive (e.g., low-vision, limited motor control, cognitive difficulties that may impact traffic navigation), and others may not legally be able to drive. As such, many people with disabilities, particularly those in rural areas, may be considered involuntary non-drivers.⁹ Henly and Brucker¹ found that driving status was an important factor in the types of trips that people take. Among those with disabilities, driving was associated with more trips, particularly social trips. Myers, Ipsen, and Standley¹¹ extended upon this work by highlighting how driving impacts transportation use by geography. Disabled non-drivers in urban areas are more likely to take a trip than their peers in rural areas, especially social trips (56% more likely) and work trips among employed (63% more likely). These trends may reflect the fact that many urban environments are more pedestrian-friendly and have more available public transit options than rural environments. For example, the same study showed that disabled non-drivers in rural areas are far less likely to report walking/rolling (10% vs. 33%) or using public transit (6% vs. 28%) than non-drivers in urban areas. As a result, rural non-drivers are more dependent upon getting rides from others. Indeed, nearly 84% report riding in a vehicle as a passenger, compared to 48% in urban areas. This trend suggests that social capital may play an important role in transportation access.

Social capital theory advocates that the support systems provided by our networks of family, friends, neighbors, coworkers, acquaintances, and other associations have value and offer benefits in concrete and measurable ways. Political scientist Robert Putnam has written extensively on the concept of social capital and defines it as the “connections among individuals—social networks and the norms of reciprocity and trustworthiness that arise from them” (pg. 19).³⁰ The relationship between social capital and transportation may work in two ways. An in-depth literature review by Lucas³¹ described how transportation and mobility access contribute to stronger social networks and social capital, and improved access to “life opportunities and resources” (pg. 109). Focusing on rural areas, Gray et al.³² discusses the importance of social capital for meeting the mobility needs of rural residents without access to a vehicle, importantly noting the role of these informal networks for filling gaps in public transportation particularly in tight-knit communities. These studies show how transportation access increases social capital, while at the same time, social capital may also be leveraged to meet mobility needs.

1.3. The current study

Driving is a near necessity to meet mobility demands in rural America. Yet many people with disabilities living in rural communities do not or cannot drive. Prior research has described what types of transportation disabled non-drivers use and what types of trips they take. This study builds upon these lines of research by qualitatively exploring how disabled non-drivers in rural areas get around (or don’t get around), where they go (or don’t go), and what they do (or don’t do). To facilitate this exploration, we asked the following research questions:

1. How is transportation associated with community participation and healthcare access?

2. What is the relationship between social capital and transportation?

2. Methods

2.1. Methodological approach

We used thematic analysis as our approach to this study of qualitative, semi-structured interviews. Thematic analysis is an inductive approach used to identify themes from data.³³ In our analysis, we focused on experiences of and interrelationships between transportation, social capital, community participation, and access to healthcare. Through this approach, we seek to supplement existing quantitative research with insights gained from qualitative inquiry, and inform future research and policy related to rural transportation with an emphasis on disability.

2.2. Sampling procedures and participants

We used purposive sampling to recruit individuals who met three inclusion criteria: 1) living in a rural area of the U.S., 2) having a disability, and 3) relying on public transportation or others for rides. Recruitment flyers were emailed to national, regional, and state-based organizations that served people with disabilities. These organizations subsequently relayed this information to individuals in their networks. Interested participants contacted us via email or phone. Inclusion criteria were verified via self-report. Verification of disability occurred through the screening question, “Do you have a disability?” The specifics of their disability and how it impacted their travel were further explored in data collection. Rurality was verified by matching addresses to the U.S. Office of Management and Budget (OMB) county classifications.³⁴ Individuals who lived in non-metropolitan counties were automatically included. Those who lived in a metropolitan county were asked to describe their rural context, and recruited into the study if they lived outside of a city (e.g., countryside) or in a non-urbanized area as defined by the U.S. Census Bureau (population less than 50,000). This two-pronged strategy ensured we captured a broad experience of rurality and accounted for the varying sizes of counties across America. Overall, we interviewed 33 people across 16 states. Of these participants, 22 lived in a non-metropolitan county and 11 lived in rural areas of a metropolitan county. All procedures were approved by the University of Montana Institutional Review Board. Participants received a $30 incentive for their participation.

2.3. Data collection

The two authors conducted 33 semi-structured interviews with eligible participants. Interview topics included participants’ community activities and their general experiences with transportation and getting around town. We conducted interviews via Zoom or telephone and obtained verbal consent to record each interview. Completed interviews averaged 40 minutes (range: 17–72 minutes). Two calls were dropped 11 minutes into the interview, and we were unable to reestablish contact. Data from these incomplete interviews were still included in our analysis. Participants provided demographic information via open-response questions. Some participants declined to answer some demographic questions. The research team constructed categories to report demographics (Table 1).

Table 1.

Participant Demographics

Variable	Categories	N	%
Region	West	14	42.4
	Midwest	6	18.2
	South	13	39.4
Disability type a	Mobility	14	42.4
	Vision	11	33.3
	Cognitive/Psychiatric	5	15.1
	Activities of daily living	2	6.0
	Hearing	1	3.0
Assistive equipment used for transportation a	Power or manual wheelchair	10	30.3
	Support cane	5	15.2
	Walker	5	15.2
	White cane	4	12.1
	Van with ramp	2	6.0
	None	5	15.2
Gender	Women	20	60.6
	Men	10	30.3
	Non-binary	1	3.0
Mean age (range, SD)	54.59 (29–76, 14.04)
Race	White	25	75.8
	Black	2	6.0
	Mixed-race	1	3.0
Ethnicity	Non-Hispanic	23	69.7
	Jewish	1	3.0
Highest level of education completed	8th grade	1	3.0
	High school	7	21.2
	Vocational training	1	3.0
	Some college/Associate’s degree	13	39.4
	Bachelor’s degree	3	9.1
	Master’s degree	5	15.2
Employment	Not employed	21	63.6
	Part-time	8	24.2
	Self-employed	1	3.0
Annual household income	Under $25,000	14	42.4
	$25,000 – $45,000	10	30.3
	$45,000 – $75,000	4	12.1
Mean number of people in household (range, SD)	1.90 (1–5, 1.029)

Note. Not all participants responded to all demographic questions. As a result, the percentages in this table do not sum to 100.

^aSome participants reported multiple types of disabilities and using multiple types of assistive equipment during transportation.

2.4. Data analysis

Interview recordings were transcribed verbatim. Next, we used QSR NVivo to conduct a thematic analysis.³³ Within this framework, we used coding procedures that progressed through three phases: open, axial, and selective coding ³⁵. In the first phase of the analysis, both authors read through the first five interview transcripts (in order of interview date) and independently conducted open coding to group the data inductively. This resulted in a total of 81 initial codes. In our next analytic phase, axial coding, we combined concepts identified across codes and worked iteratively to reference concepts back to the interviews. We began by grouping the initial 81 codes into 11 top-level codes and nine sub-codes. Using this coding scheme, we re-coded the first five interviews and then met again to confer about how well the codes were matching the interviews. After revising the coding scheme further, we independently coded the next five interviews and repeated this process. Throughout this analysis, some codes were rejected and new concepts arose, necessitating another round of open coding and axial coding until we achieved interrater reliability of over 80% for all codes across the first 10 interviews. The final codes included 10 top-level codes and 12 sub-codes (Table 2). Using this final coding scheme, both authors independently coded the remaining transcripts. We then moved to our final analysis phase of selective coding, during which we integrated the codes into four themes which we developed in detail together.³⁵ In this final phase, we integrated the identified themes with the topics from our research questions: transportation, community participation, access to healthcare, and social capital. Table 3 outlines these themes and their supporting codes. We operationalized inductive thematic saturation as the extent to which the data provided new theoretical insights.³⁶ Using this conceptualization, we achieved saturation with the collected data.

Table 2:

Final Codes

Top-level Codes	Sub-codes
Participation	Benefits of Current activities Desired activities Remote or virtual Transportation impacts
Attitudes	External (from other people) Internal (self)
Time	Business hours and event times Time management, including planning the day Transit schedules (frequency and service times)
Dependence	Transportation-specific Other (non-transportation)
Independence
Rural issues
Physically inaccessible transportation
Lack of transportation
Transit routes (locations and places)
Transportation expenses

Table 3.

Final Themes and Supporting Codes

Themes	Sub-themes	Supporting top-level codes
Rural context	Lack of public transportation	Lack of transportation Rural issues Time Dependence Participation
	Out-of-town trips	Rural issues Lack of transportation Transit routes
Transportation accessibility	Physically inaccessible transportation	Physically inaccessible transportation
	Attitudes and behaviors that influence transportation accessibility	Attitudes
Exogenous transportation factors and impacts on participation and healthcare	Transportation expenses	Transportation expenses Participation
	Transit schedules	Time Participation Dependence
	Transit routes	Transit routes Participation Independence
Social capital	Community access	Participation Rural issues
	Dependency	Independence Dependence Participation Time
	Social pressures	Participation Dependence Transportation expenses

3. Results

In this section, we describe four main themes articulating the intersections of rurality, various facets of transportation accessibility, external factors that impact community participation and healthcare access, and the role of social capital in transportation access. For each main theme, we briefly introduce the overarching theme, present quotes from interviewees that exemplify the theme and sub-themes, and then provide a summary description of the theme. To protect the interviewees’ confidentiality, we assigned pseudonyms and redacted the names of some places. However, we include information about interviewees’ demographics as well as their type of disability and types of mobility or assistive equipment used, if any.

3.1. Rural Context

Respondents described the rural context of transportation in their communities in two main ways: 1) lack of transportation options such as buses, taxis, uber, or other public use modes, and 2) having to travel out of town for certain things such as clothes or health appointments.

3.1.1. Lack of public transportation

When asked about their experiences with transportation in their rural communities, interviewees overwhelmingly described a lack of opportunities.

Like if I want to go to the park and walk around the lake or something, I can’t just get out, leave my house and hop in the car and do that. I have to plan this out. Most of the things that I get frustrated in or get frustrated by is simply not being able to do things when I want to do, always having to be patient, patiently waiting on others to help me out, because my town doesn’t have any kind of transportation system for me to get out of the house. [Shane, a 41-year-old deaf-blind man who uses a white cane and a cochlear implant]

When Shakespeare in the Park comes in the summertime, I really like to go and I have one friend that likes to go too. Actually, I’ve got two friends. Usually, one of them is going to go with me and those are… they don’t start until 6:00 in the evening. I need a ride other than [local bus]. There is no taxi service, so if my friends aren’t available, then I don’t go… That’s too with occasional concerts. I really like to go to place at the local playhouse but that maybe happens once every couple of years… Just about everything that I want to do that I can’t do it’s for the same reason, lack of transportation. [Helen, a 76-year-old blind woman who uses a walker and cane to get around]

Here in [rural town], there’s really not any options for people like me that can’t drive and stuff, because of the seizure disorder…We don’t have a lot of options. If you don’t have a family member or friends that can take you around, then you’re stuck. [Tanya, a 49-year-old woman with epilepsy who uses a walker and cane]

I also have to realize that if I’m going to town and that I’m going to do anything that’s later that I either have to have someone come and pick me up, to be able to take me home, because I can’t count onto the bus system. We do not have a cab in [rural town]. [Theresa, a 65-year-old woman who is blind an uses a white cane and a voice-activated device attached to her glasses]

As these interviewees shared, many of their rural communities lack public transportation options. These quotes provide insight about how this impacts their lives and opportunities for community participation.

3.1.2. Out-of-town trips

Interviewees talked about trips out of their local areas and longer distance travel, and their reasons for taking these longer trips:

For one thing, we don’t have very many places for reasonable prices clothing. We got grocery stores. It’s just like when you think of a Shopco, or a Walmart and so on. We don’t have those kind of stores here at all. [Donna, a 62-year-old woman with a vision impairment who uses a cane]

Because we live in a rural community, for example, those of us with disabilities sometimes have a lot of medical specialists that locally not really anybody knows about our issues, so we have to travel to a larger community, and really, there’s no way to get there. Unless you have your own vehicle that’s modified and have a way of having a driver, you’re pretty much stuck. [Brenda, a 54-year-old woman with quadriplegia who uses a power chair and ramp van]

Going to town and shopping is a treat, but it’s an hour and a half just to go…They have a bus, and they’ll take you to doctor’s appointments and [city]. Once or maybe twice a month they go to [city]. [Aaron, a 44-year-old man with a neurodegenerative disease who uses a scooter, wheelchair, and walker.]

Although rural towns had grocery stores, people were reliant on going to larger towns to buy many other items and for healthcare appointments. Despite the clear need to take occasional out-of-town trips, doing so was a struggle for the disabled rural residents we interviewed. Many interviewees described or alluded to the intersection of barriers to transportation, such as limited hours of operation of public buses and paratransit services that would provide these longer trips.

3.2. Transportation accessibility

Respondents described the way transportation was and was not accessible, which encompassed both physical and attitudinal aspects of accessibility.

3.2.1. Physically inaccessible transportation

Interviewees who used wheelchairs had the most to say about how public transportation that was physically inaccessible or inadequately accessible.

They said they couldn’t pick me up because they couldn’t have my chair and they couldn’t take me where I needed to go, stuff like that…Those people were a real pain in the butt to work with…[The bus] doesn’t have space for my power chair. They have space for a little foldy chair, but I can’t do those. [Andrea, a 37-year-old woman with cerebral palsy who uses a power chair]

[T]his particular bus system, which is county-operated, won’t load an electric wheelchair on the bus that comes once every hour outside my door. If I want to use the bus, I’m to call and make arrangements a day or two or three ahead and at times told that there’s nothing available because they’re afraid the drivers can’t keep themselves safe loading a chair on lift-equipped buses… In California where I lived, that would’ve been against the ADA. But I’ve moved to rural [southeastern state] and I haven’t really tried to research hard to buck them. [Ruth, a 70-year old woman with multiple sclerosis who uses an electric wheelchair]

Interviewees also described the inaccessibility of personal vehicles:

I can’t get into [my personal assistant’s car] because I have to have something that’s low to the ground because I’m in a wheelchair [Lisa, a 55-year-old woman with cerebral palsy who uses a wheelchair]

I had a friend bring, we were going to go out and eat, they brought two cars here. Couldn’t get in either one of them. [Marsha, a 76-year-old woman with paralysis on the left side of her body who uses a walker and a wheelchair]

Although most interviewees who talked about physically inaccessible transportation described public transit, these difficulties were also present when using taxis and the personal vehicles of personal assistants and friends.

3.2.2. Attitudes and Behaviors that Influence Transportation Accessibility

Interviewees talked about how the attitudes of drivers of public buses, paratransit, rideshare services, and taxis influenced their experiences of transportation accessibility. One deaf-blind interviewee described how his transportation experiences differed in rural, versus urban, areas:

A lot of times big city taxi drivers see 100 people a day, and so at some point in their career, a lot of them have come across somebody in a wheelchair, or with a white cane, or something. A lot of times, if I say I’m blind then they’ll know what to do. I took probably a dozen taxis when I was in New York for the summer and I never really had a problem...One time I was there and the cab driver let me know. He’s like, “Hey, the doors are open. Don’t step there or you’re going to just fall into a hole.” That’s an example of somebody who’s aware that somebody can’t see and they’re proactive about it…Whereas I’ve had rides locally where they drop me off in the middle of a—right beside a street lamp. And so, when I open my door, of course the door bangs, the lamp post and then they get mad. They’re like, “Hey, what are you doing?” I’m like, “Well, I didn’t know it was there.” [Shane]

Other interviewees described how drivers’ attitudes and behaviors impacted them:

There were a few times that you got a bus driver that wasn’t as friendly, and they wouldn’t tell you when you were at your stop and they’d forget about you…It was frustrating and spooky because you don’t know exactly where you’re at, and you got to be able to trust someone to reorient you so you can know where you’re going... It threw the whole day off and the rest of the day I was in a foul mood. It was just one of the times where, “What else is going to go wrong?” [John, a 63-year old blind man who uses a manual wheel chair, walker, and screen reader]

I had had a TIA, which is a mini-stroke, in February. I’m using a walker and stuff now…This one driver I had, she was just flat out rude and I told her, I said, “Look, I can’t sit in the back. I have to do upfront for me to be able get in and out.” She goes, “Well, I normally keep my papers and stuff there.” She had to move them and she was all pissed off…I dread going with them because when I have her, she’s just not a pleasant person. [Tanya]

Despite the overwhelmingly negative experiences and emotions connected to transportation accessibility, many interviewees also shared positive experiences:

…the [paratransit] drivers are all real nice. They help you get in and out and they’ll even take packages into the house for you and they’re really good with that whether they’re supposed to be doing it I don’t know but they do…That way it’s real supportive. [Larry, a 63-year-old man with a mobility impairment who uses a power chair and a van with a ramp]

…the bus drives all through the county, and you just tell the bus driver, “Hey, I want to go this place here. I want to go through the state park of [rural place], and he’ll take you there if that’s the bus you’re supposed to be on. If not, then he’ll tell you, “You get off here at a main bus stop, and then wait here for the Red route, Blue Route, whatever route it is, and then you get on, then you go. [Fred, a 71-year-old man with a cognitive disability who used a cane with wheels]

Most interviewees were dissatisfied with rural transportation services. Most descriptions of physically inaccessible transportation centered on public bus systems that lacked capacity for wheelchair users, especially users of power chairs. Even when buses were equipped to be physically accessible, these features were sometimes negated by drivers who would not assist riders to load or secure their wheelchairs. While wheelchair users had the most to say about physically inaccessible transportation, interviewees with a variety of disabilities described how drivers’ behaviors and attitudes sometimes impeded their ability to use transportation services. Several interviewees reported appreciating the kindness of drivers who were considerate and supportive. However, most reports were of negative experiences with drivers who were unhelpful, impatient, and rude, often in response to riders’ needs for disability accommodations.

3.3. Exogenous transportation factors and impacts on participation and healthcare

Transportation was impacted by several factors external to interviewees. These exogenous factors included expenses, time, and transit routes.

3.3.1. Transportation expenses

Interviewees described variations in transportation costs and how costs could add up:

In [rural county] where [rural town] is, people with disabilities get half-price bus fare. That’s nice. [Vio, a 41-year-old nonbinary person with autism]

If I have to go to a physician, [paratransit] pick[s] me up and because I’m in a rural area, I do have to pay a stipend…it would now be $12 and 80 cents per way…that would be almost $50 if I had to go twice to my doctor per month. [Joyce, a 63-year-old woman who was blind and used a white cane]

And then of course the taxis and Ubers, I would use them only in emergency just because the cost is so high…I’m a single mom raising a kid on 800 bucks a month. There’s not a lot of wiggle room. [Erin, a 39-year-old who was blind and used a white cane]

When I got here, I didn’t think to say anything about this until I was just about out of money, because I was paying my niece to drag me around, and I didn’t realize it was like $100 a week. My cash went down really fast. [Shirley, a 73-year-old woman with a mobility impairment]

Transportation expenses influenced both community participation and use of healthcare services:

If there was transportation that didn’t cost as much, on the weekends I could go to church. I could go to the movies or go bowling. [Holly, a 51-year-old woman who uses a white cane and guide dog]

I give [my friend] $20 for any visit to [city]... If I have to make four appointments there, that’s $80, and I do that monthly anyway for the eye doctor, the kidney doctor twice a week. Then one other appointment, usually my foot appointment, I also have neuropathy, so I have to see my foot doctor too…Those are necessary to keep. Now, if I had to do my doctor appointment and my labs in [city], that’d be another $40 I couldn’t afford. I would have to eliminate and it would probably be my foot doctor, the first one out the door. You see how I have to pick and choose? [Charlene, a 59-year-old woman with severe neuropathy who uses a cane]

Some interviewees talked about hiring personal assistants or other drivers to provide transportation:

I can hire drivers. The main hurdle with that is that Medicaid only pays them $10.87 an hour… And you can—the starting at McDonald’s is double that right now… It’s hard to find drivers. [Erin]

Most interviewees described transportation as expensive relative to their means and how transportation expenses could add up quickly. Taxis and rideshare services such as Uber were described as prohibitively expensive. Transportation expenses impeded interviewees’ community participation and ability to access healthcare services. For participants who were eligible for paid personal assistance services, it was hard to find drivers because of the low wages they could offer.

3.3.2. Transit schedules

Interviewees who lived in communities that did have public transportation talked about how transit schedules impacted their community participation and ability to get around.

The local bus really is not practical. It starts like at ten o’clock in the morning, and it’s done by like 2:00 in the afternoon. Other than getting to some of the local stores, it’s not practical to use for getting to any events or anything like that…It’s almost like it’s something that they will say, “Oh, we have transportation,” but it’s kind of just like a band-aid. [John]

They don’t run [the local bus] on weekends. They don’t run it at night, they don’t- holidays blah, blah, blah, but it’s there. [Larry]

…you also have to figure in when businesses are open, that you need to go to. It limits a lot. [Theresa]

Interviewees talked about paratransit in terms of scheduling and being picked up for rides:

…you have to make an appointment 48 hours or more in advance, but that’s always predicated on if they have drivers available. [Shanice, a 58-year-old woman who used a cane and a power scooter]

The paratransit, you get stranded, the drivers don’t come on time. You have to wait a long time for them to get you again, maybe an hour minimum, and this is nationwide. They have an hour minimum wait time because they’re a shared service. It’s not ideal. [Leah, a 36-year-old woman with cerebral palsy who uses both a power and manual wheelchair]

It all takes a lot of planning. …you’re waiting on somebody else and you have to be very good at time management. [Theresa]

Both public buses and paratransit were marginal in meeting interviewees’ needs to access their communities. Bus schedules were sparse and limited to mostly weekday daytime hours. Descriptions of paratransit schedules were unanimously negative, due to the wide windows of time for pick-ups, having to schedule rides in advance, and unavailability of drivers, all of which substantially limited what interviewees could accomplish in a day. Given these issues, interviewees who depended on public buses and paratransit had to be skillful at time management.

3.3.3. Transit routes

Interviewees talked about transit routes in terms of connectivity with their destinations and other forms of transit:

I would love for there to be a routine bus line in this area that I could use. Even though doing a bus on my own and trying to understand bus routes is intimidating a little bit, I feel like I wouldn’t feel so tied down on the weekends. I could get into [city] for stuff on my own, take my kid to the museum. It would open up a lot more. [Erin]

I tend to run into trouble if there either isn’t a connection or if I start venturing outside of the county in which in which I live… There’s been many doctor’s appointment or just general spots that I can’t make it to. [Dan, a 37-year-old man with spinal fusion who used forearm crutches and a walker]

One participant, who was deaf-blind, compared the connectivity of transit routes in urban versus rural areas and talked about the influence of transit on independence:

I went to Helen Keller National Center for a summer and I was in New York. That’s just right outside Manhattan. It was really nice to be in a big city because of all the public transportation options. I went from Long Island to Manhattan Island and then to a Yankees game, while I was there that summer. I did it all myself. You take a taxi cab to the train station, you take a train into Manhattan, once you’re in Manhattan, you take subways. You take subway all the way to Yankee Stadium. So it’s a bit of independence but when I’m here in [rural town], I don’t have any of those options. I just have to pick up the phone, and bug a relative. [Shane]

Interviewees shared that paratransit was geographically limited and that connectivity between types of transit was insufficient in rural areas. Interviewees wanted routes that connected to larger towns so that they could access services that were unavailable locally. One participant spoke in depth about how well-connected routes in urban areas can facilitate independence and that, in contrast, rural areas without well-connected routes create dependence.

3.4. Social Capital

Most interviewees described how they drew upon their social relationships to meet their transportation needs. This theme of leveraging social capital for transportation was persistent throughout these interviews, manifesting in three ways: providing access to the community, feeling dependent upon others, and the social pressures or expectations that accompany getting rides from people.

3.1. Community Access

Interviewees talked about getting rides from other people to access things they wanted to do in their communities:

I generally get around using friends or family. [Rural town] is a small town. I think we maybe have a taxi service, but by the time you factor in gas prices here lately, especially, it’s cheaper and my friends and family don’t mind helping me get around so I just stick with friends and family. [Kelsey, a 29-year-old woman who was blind and used a white cane]

[N]ow I’ve got so many friends that sometimes because they know I’m give a little piece of change or something, they’ll go, “You want to go out and eat today?” Because they know I’ll probably get their dinner for them. “Yes, let’s go.” If I’m in the mood or something like that, and I’m blessed like that [Marsha]

We got a lady from our church comes and gets us each time. On Sundays and Wednesday nights when we have services…I get very satisfied when I can get a ride and we do go out town and we do it. I’m very satisfied.…to give you little idea, the 3rd of March, my son had surgery. He had reconstructive surgery, is what it was. Anyways, the lady that took us, her and I, like I said, we went to the [sports store] there in [city] and did other things, because she has pets and animals. Then I went to different stores and got different things, like I was telling you earlier, that we couldn’t get here in [rural town]. [Donna]

My son will try to take me when he is feeling good enough to. My mom really doesn’t get around as good as she used to anymore. She is almost 77 years old. She’s had problems with her leg lately. Anyway, it takes her a little bit, so we don’t go out like we used to but I have where I can call for medical rides that like, if I have to go shopping at the store or something, my son has to take me. [Tanya]

Interviewees described how they leveraged their social relationships and networks to meet their transportation needs for getting out into the community, whether it was for errands, health appointments, getting to church, or socializing. These examples demonstrate the realized value of social networks for facilitating community living for many disabled people who do not or cannot drive in rural areas.

3.2. Dependency

Interviewees also talked about being dependent on others for transportation:

My sister-in-law is the one who drives me the most often, and she has children. She had to cancel on me to go an appointment in [city]. I had to find alternate driver or cancel the appointment. I ended having to cancel that appointment because I didn’t have someone to pick up and drive me that day… It was a specialty visit, so I had wait several months to get in again. It makes life difficult. [Ashley, a 34-year-old woman who used a power chair]

If my schedule is not in accordance to whatever their availability is. There’s times where I have to just really just literally just sit at home and not do the things that I need to do because they’re not available to take me to where I need to go. [Shanice]

It’s hard to adjust to the fact that, where you used to be able to get in your truck and take off, you have to call somebody to arrange a timeframe. It is difficult [Shirley]

I’ve got a list of people that I text or call as backup plans, and when that doesn’t work out, I don’t go anywhere and I reschedule or end up canceling whatever I’m doing. [Erin]

I go to the same church my grandma goes to which has its ups and downs… She likes to sit in the back and just sneak in and out, and I’m more of a social butterfly and so, occasionally I want to do something…so in that situation finding rides has been a little bit difficult if she doesn’t want to do something …[Kelsey]

While some individuals described how fortunate they felt for being able to ask others for rides, some also described how it made them dependent. Within this context, people had to arrange their trips around other people’s schedules. These examples demonstrate how leveraging social capital for transportation, while helpful for meeting transportation needs, may also create difficulties. In the context of organizing activities and making appointments, being dependent on others for transportation can be an added challenge.

3.3. Social Pressures

Interviewees talked about feelings connected to receiving rides from others:

The best way to lose friends is to ask them for rides on a regular basis…if a friend’s taking me somewhere, hopefully it’s because they actually want to and they want to spend time with me. [Erin]

There are shopping places I would like to go that people don’t go to… It’s an inconvenience to ask somebody sometimes, especially something like that where it’s not really necessary, but you want to go anyway. Unless they go and do the things I want to do. [Charlene]

I wouldn’t feel comfortable asking someone to help if they weren’t also interested because then they’re driving me to [city] and doing what for the hour, hour and a half that I’m in this class or workshop or whatever. [Kelsey]

Like dependency, many respondents described social expectations or pressures that accompanied getting rides from others. For some, this meant that they didn’t go to places that they would otherwise like to go if they had more independent means of transportation. These quotes exemplify the limits of social capital and how getting rides from others, while certainly helpful, may also restrict independence and some opportunities for community participation.

4. Discussion

These findings show that non-drivers with disabilities living in rural areas must cobble together a patchwork of transportation options (e.g., fixed-route service, paratransit, taxis, and rides from others). Paralleling prior results from quantitative research, interviewees described a lack of public transportation options in their rural communities. Even when transportation was available, it was often inadequate. For example, rural transit services may have limited hours or routes that do not adequately connect the places people need to go. While a 2020 report³⁷ showed that rural transit was available in 82% of counties across the country, availability does not necessarily capture how well the mobility needs of disabled non-drivers are being met. The authors of that report note that the NTD data they used lacks specificity about geographic coverage. They state, “Even if county-level data from the NTD were available, its usefulness would be limited because some areas of a county may be unserved. Some agencies strictly serve a municipality or parts of a county… Consequently, in some cases, the transit agency may not serve all residents within the county subdivision” (pgs. 21–24).

Participants also discussed the accessibility of different transportation options. The ADA prohibits disability discrimination by public and private operators of ground transportation. For example, the ADA has several requirements to meet the needs of people with disabilities, such as securing wheelchairs, allowing service animals, and announcing stops.³⁸ However, the ADA is a complaint-based law that largely cannot address accessibility issues at the moment they happen. This means that discrimination may still occur as described by some of the interviews in this study, such as drivers refusing to secure wheelchairs or announce stops. These findings are similar to multiple studies conducted by Bezyak et al.^39,40 and Das Neves et al.⁴¹ who found that drivers’ behaviors and attitudes introduced an additional component of “attitudinal accessibility” which impacted how riders with disabilities used public transportation. For example, Bezyak⁴⁰ found that disabled urban transit riders were more likely to report drivers not calling out stops, inappropriate attitudes, and lack of disability knowledge than those in rural areas. While not the focus of this study, some interviewees compared their rural experiences with urban areas. For instance, at least one interviewee described how taxi drivers in New York were more aware of his needs as a blind person than drivers in his rural community, surmising that this may be because taxi drivers in big cities have more interaction with people and thus are more likely to come across someone with a disability. Yet we also heard from other interviewees who described how helpful some rural bus drivers were. These contrasting findings warrant further exploration of transit drivers’ attitudes in rural and urban areas.

Besides using public transportation options (where they were available), most interviewees also described leveraging social capital to meet their mobility needs. Our findings align with the work of Gray et al.³² as many interviewees shared that they often drew upon their relationships for rides. Whether these rides were from co-workers, family, friends, or others, interviewees leveraged their social relationships to meet their transportation needs. While getting rides from other people provided access to the community, it also meant that interviewees were dependent upon others for their transportation. This dependence was accompanied by a sense of social expectation or reciprocity between rider and driver. In some cases this meant that there were places individuals wanted to go but didn’t. For example, interviewees described how they wouldn’t be able to go anywhere if their schedules didn’t correspond with people’s availability and feeling uncomfortable asking people for rides to places that others wouldn’t be interested in going.

These findings are relevant to Schwanen et al.⁴² who note that social capital can help reduce transportation advantage but may also perpetuate existing inequities in transportation access. For example, individuals with limited mobility options (e.g., many people with disabilities and non-drivers) likely have fewer social relationships to draw upon for transportation. However, without the ability to get out of the house, they may be unable to create new social relationships. Thus, inequities are perpetuated. Indeed, Dimakos et al.⁴³ found that, in general, people with disabilities have less social capital compared to the general public. Bates and Davis⁴⁴ further elucidate the risks of relying too much on social capital for addressing inequalities, stating that people with disabilities could be undervalued if they are not seen as an asset to their community. In this way, social capital, while certainly valuable, should be a compliment to other services and supports rather than an alternative. Future research should explore how disability status, driver status, and social capital are interrelated. For instance, individuals who recently acquired a disability or recently stopped driving may have more social capital to draw upon for their mobility needs than individuals who acquired a disability early in life or have never driven. While this trend was not apparent among the individuals we interviewed, it nonetheless warrants further consideration.

4.1. Policy Implications

Article nine of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) specifically identifies transportation as a key element for improving accessibility for disabled people to engage in social and economic activities across the globe.⁴⁵ While the U.S. has yet to ratify the CRPD, these findings have several policy implications that may help to improve transportation access for rural disabled non-drivers.

Public transportation in America has been chronically underfunded for decades.^46,47 This is especially true in rural areas and has a significant impact on people with disabilities and those who do not drive. Efforts to address transit funding should consider two overarching goals: 1) increasing transit funding across the board nationally and 2) ensuring this funding is distributed equitably to areas and populations in need of public transportation. Importantly, rural residents appear to value public transportation services. In a survey of rural Texas residents, Israel Schwarzlose et al.⁴⁸ found that respondents (i.e., taxpayers) were willing to pay to improve local public transportation options. Indeed, rural transit may be an opportunity for bipartisan partnerships.²⁸ The Infrastructure Investment and Jobs Act, (also known as the Bipartisan Infrastructure Bill) which was passed by the U.S. Congress and signed into law by President Biden in November 2022, includes increased §5311 funding to support rural transit services.⁴⁹ While this may indicate a brighter future for rural transit, §5311 does have a caveat that may hinder its impact. This program is intended to “support public transportation in rural areas with populations of less than 50,000, where many residents often rely on public transit to reach their destinations.” However, millions of rural residents live in places without public transit services, yet still need transportation. Funding priorities that help support the establishment of transit services are essential to filling this gap.

While improving rural public transit is a worthwhile goal and should be pursued, the reality is that many people with disabilities, especially in rural areas, still rely on personal vehicles for their mobility needs.⁵⁰ Within the context of America’s automobile-oriented society, vehicle access is not a “want” but rather a “need.”^6,29 Of course, some disabled non-drivers may not be able, or legally allowed, to drive. Yet the benefits of automobility should not be restricted to only those who can drive.⁶ In this case, strategies that provide the benefits of “universal auto access.”⁶ among non-drivers should be explored.

One strategy to promote universal automobile access may include developing rideshare as an equitable mobility option in rural areas. While people with disabilities in general are less likely to adopt rideshare, those who do are more likely to take a trip once it becomes a viable option.⁵¹ Of course, for some of the interviewees in this study, the cost of rideshare services is often restrictive. Voucher programs may offer a solution. These programs provide eligible riders with a voucher checkbook and an allocation of miles from a sponsoring agency. The agency negotiates with public and private transportation providers (e.g., bus/taxi/rideshare) to accept voucher checks as payment for rides. Community members may also volunteer to become drivers and are reimbursed via the vouchers. Studies of these programs have found that people with disabilities who have transportation vouchers have made substantial gains in employment and independence. Additional benefits have been found as well. For example, participants in a pilot study in 10 rural communities expressed relief that they knew they could get a ride when they needed it and were more willing to request rides because they could pay for them,⁵² which could potentially alleviate some of the social pressures related to asking others for rides as described interviewees in this study.

4.2. Limitations

This paper highlights the lived experiences of rural disabled people and provides important insights into how disabled people navigate the complexities of rural transportation. However, there were some limitations to this study. Participants were mostly white women, and both race and gender may have influenced the experience of obtaining transportation that may be different for rural disabled people of other races and genders. However, we did not observe differences based on these factors. Most of our participants lived in the West or the South, with no representation from the Northeast region of the U.S. Additionally, we used convenience sampling to recruit interviewees to this study. This sampling strategy biased recruitment to people who were more connected to our own networks. For example, seven of the 33 interviewees lived in the same state as the authors.

5. Conclusion

These findings provide more nuanced insights into the state of rural transportation with a focus on disabled non-drivers. Specifically, we found that most interviewees described a lack of adequate public transportation options that fit their mobility needs. Even if public transit was available, other issues limited use such as inaccessibility, expenses, and schedules or routes that did not align with desired activities or necessary errands. Many participants also described using social capital to meet their mobility needs. While getting rides from others was described as valuable and a critical component of many individuals’ daily travel, it also introduced a layer of dependency and social pressure that otherwise would not exist with more independent means of transportation. Future research should continue exploring the role of social capital in meeting the mobility needs of people with disabilities in rural areas. Policy recommendations include improving rural transit funding and strategies to promote universal auto access.

HIGHLIGHTS.

• Disabled non-drivers in rural America patch together different transportation modes

• Inaccessibility, expenses, or inadequate schedules/routes limit public transit use

• Most interviewees also relied on getting rides from others to meet mobility needs

• Relying on others for rides introduced aspects of dependency and social pressure

• Policy suggestions include improved rural transit funding and universal auto access