Abstract

Although the American Disabilities Act (ADA, 1990) became federal law more than two decades ago, individuals with disabilities continue to experience substandard healthcare. We use this article to hone in on disabled women's experiences of seeking gynecological care and the access disparities they still face. The data for this qualitative study were gathered using in-depth interviews with 20 women living with spinal cord injuries in or around Detroit, Michigan. Each interviewee was questioned about overall health and physical functioning, accessibility of doctor offices, interactions with health care providers, and gynecological health-seeking behaviors. In this paper we report on women's gynecological healthcare experiences and related attitudes and practices, and what women see as the primary structural and social barriers to comprehensive care. Findings echo past literature about the inaccessibility of doctor's offices, including the lack of suitable exam tables. However, our findings also suggest that the lack of education and training among medical providers could be a key social barrier and determinant of whether individual women actually secure gynecological care.


Traumatic spinal cord injury (SCI) refers to a sudden injury that causes paralysis and loss of sensation, the effects of which occur below the trauma site. Some individuals lose the ability to use their legs and lower body (paraplegia) while others lose this ability from the neck down (tetraplegia). Since complete or partial motor paralysis necessitates lifelong wheelchair use and lifelong coping with a range of serious medical complications (Jensen et al., 2007), a survivor of SCI must deal with the impairment and the physical effects of the impairment at the same time as the social barriers created by an ableist society that defines their bodies as 'abnormal' (Hughes and Patterson, 1997; Morris, 2001; Shildrick, 2002; Thomas, 1999).

Approximately 270,000 Americans currently live with SCI and an estimated 12,000 new injuries occur each year (National Spinal Cord Injury Statistics Center (NSCISC), 2012). Since 2005, the average age of injury is 41 years and 80.6% are male. Motor vehicle crashes are the most common cause of injury (39.2% of all injuries) followed by falls (28.3%), violence- and sports-related causes (14.6% and 8.2% respectively). On some quality of life indicators ranging from employment and financial well-being, to family life and psychological adjustment, to a range of personal health outcomes, persons with SCI are more disadvantaged and more dissatisfied than the able-bodied population (Hammell, 2004 & 2007; Krause and Broderick, 2004; Whiteneck et al., 2004), with women facing poorer outcomes than men overall (Forchheimer and Tate, 2004; Isaksson et al., 2007; Pentland et al., 2002).

Further, although the American Disabilities Act (ADA, 1990) became federal law more than two decades ago, individuals with disabilities continue to experience substandard healthcare services (Pharr and Chino, 2013; Symons et al., 2014; see also the ADA website: http://www.ada.gov/usao-agreements.htm). People with disabilities — including those with SCI — are "more likely to report barriers to accessing care, lower quality of care, and are less likely to engage in preventative services when compared to people without disabilities" (Pharr and Chino, 2013, p. 117). Pharr and Chino (2013) report that individuals with disabilities are less likely to get even the simplest kinds of preventative health care, such as teeth cleanings, vision checks, or weight and height checks. Disabled individuals are also "more likely to rate their health as poor and to report dissatisfaction with their health care provided" (ibid.). Women with disabilities in particular report that they needed greater access to preventative services from primary care physicians as well as prescription medications and gynecological care (Beatty et al., 2003; McColl, 2002; Nosek, 1992; Pentland et al., 2002).

To understand access disparities better and explore the contexts within which preventative health care is not provided, even with the implementation of the ADA, we use this article to hone in on disabled women's experiences of seeking gynecological care. McColl (2002) suggests that one of the biggest health challenges facing women with SCI is a lack of primary and preventative gynecological health care (e.g., pelvic exams, PAP smears, mammograms). Survey data confirm that women with disabilities are less likely to have received a PAP test, breast exam or mammogram than women without disabilities (Pharr and Chino 2013; Kaplan, 2006; Kung et al., 2012; Nosek, 1992). The reasons for this can include physicians' lack of knowledge about the impact of severe disabilities on gynecological health, a lack of sensitivity to women's unique health care needs, and discomfort in providing care to disabled bodies (Beatty et al., 2003; Becker et al., 1997; Brandeis, 2003; Oshima et al., 1998). Kaplan (2006) begins to detail how even a simple gynecologic exam is difficult to secure because physicians lack the appropriate office equipment to complete this exam and the knowledge needed to examine a disabled body. Yet, in order to understand fully the inaccessibility of gynecological health care, we need to investigate how particular physical and social barriers have the ability to shape the accessibility of health care. That is, we know the barriers exist but we do not know as much about how they play out in actual health care encounters and patient-doctor interactions.

Physical and Social Barriers to Care

It is well documented that structural barriers such as inadequate disability parking, lack of suitable ramps and elevators, and crowded waiting rooms block access to care for individuals with disabilities (Pharr and Chino, 2013). Buildings might lack automated doors, office doorways might be too narrow for wheelchairs, patient rooms may not be set up to accommodate the size of a wheelchair, and doctor's offices may not have exam tables that accommodate bodies that do not fit the norm. Various health care technologies and diagnostic tools (e.g., scales or mammography machines) may also not be made for impaired bodies. In these cases, occupational therapists and other disability and aging scholars talk about a lack of "fit" or disconnection between one's body and one's physical environment (e.g., Law et al., 1996). Implementation of the ADA has lessened some, but not all, of these structural barriers. For example, public access to buildings and transportation has been improved, but less has been improved within the actual health care office (Kaplan, 2006; McColl, 2002; Pharr and Chino, 2013; Symons et al., 2014). Pharr and Chino (2013) suggest that this is partially because Title II and III of the ADA put the burden on change on the level of the individual medical practice or hospital. This means that individual practices have to be knowledgeable of ADA policy, understand the importance of both the ADA and the accommodation of disability, understand what full and equal access to health care for disabled people means, and then take the initiative to change their practices to parallel ADA standards - all on the level of the individual practice or hospital — in order to reduce the remaining structural barriers to health care. This requires considerable knowledge and flexibility upon the part of individual medical providers and practices and recent research suggests this knowledge and flexibility does not yet exist (Symons et al., 2014; Pharr and Chino, 2013). Thus, social barriers are at least as important as any structural barrier to health care.

The social contexts within which one lives can infringe upon individuals' access to comprehensive health care as well. Health care providers' perceptions (and misperceptions) and disability-specific knowledge and training (or lack thereof) help to comprise the social context within which health care takes place. Doctors and their office staff may not be trained to know how to deal with a disabled woman's health needs, for instance, and may not even know how to react upon meeting and interacting with such a patient (Oshima et al., 1998; Symons et al., 2014). If we desire individual medical practices and hospitals to be ADA-compliant as well, this rests on providers' understanding of the importance of barrier-free, non-discriminatory environments and what providing full and equal access to health care for disabled individuals means on an everyday basis, yet research suggests that physician discomfort and lack of understanding is more common (Symons et al., 2014). In the face of this restrictive social environment, studies suggest that disabled women often experience stigma, insensitivity, and discrimination within interactions with health care providers and the result may be substandard, abridged, or incomplete care (Becker et al., 1997; Oshima et al., 1998; Pharr and Chino, 2013).

Symons et al. (2014, p. 88) confirm that the lack of "physician comfort" in interacting with and caring for disabled bodies may lead to poor health outcomes for disabled individuals. Despite the "calls locally, nationally, and internationally to develop curricula to teach medical students to care for people with disabilities," very little has been done in this regard (Symons et al., 2014, p. 89). In the face of this lack of education and training, providers may develop negative attitudes when faced with treating a disabled patient (ibid.) and may also not realize the importance of making their medical offices ADA-compliant. Providers may also not know the extent to which they are not compliant with ADA regulations if they do not see disabled patients on a regular basis; they may not even realize that their medical practice has structural problems at all.

Disability scholars and advocates have described the physical and social barriers that individuals face when seeking health care (e.g., Dillaway and Lysack, 2014a, 2014b; Kaplan, 2006; Law et al., 1996; Oshima et al., 1998; Pharr and Chino, 2013). In this regard, we have made strides in figuring out why disabled individuals still face substandard health care. Nevertheless we have not centered in on exactly what the physical and social barriers to care feel like, or how they play out, in actual health care encounters. For instance, we have not considered what doctors actually know or understand about disability in any given moment, or how many different types of doctors a disabled woman may visit in order to seek preventive care (and what those different doctors might know or be willing to learn depending on specific care contexts). We know less about the exact educational gaps that individual types of doctors have, what kinds of information they need in order to provide quality care, and what happens in individual doctor-patient interactions when lack of education and training is present.

Occupational therapists, physical therapists, and all providers who work in rehabilitation settings may receive regular training to work with and care for disabled bodies, but women with disabilities do not seek care from just those providers. They visit a range of different providers for preventive care, including OBGYN offices. Therefore, what does a doctor do when she or he realizes a patient cannot climb onto an exam table by herself, or when they realize that they know little about how to care for a disabled patient? What happens if they have never touched or treated a disabled body before that moment? Thinking about the actual human encounters that take place during these situations is key for understanding more fully what shapes the accessibility and availability of gynecological health care after SCI. We must consider how doctors and office staff might act towards a disabled woman when they are not educated or trained about disability and what that lack of education and training might actually look like, in order to truly understand the ways in which physical and social barriers to health care operate.

In light of the gaps in the literature on the gynecological health care experiences of women with SCI, the purpose of this paper is to use in-depth interview data with 20 women with SCI in 2007 and 2008 to explore how one structural barrier (the exam table) and one social barrier (the lack of education and training that providers receive) are handled within actual health care encounters, and how the lack of education and training in particular can be what shapes the accessibility of gynecological health care for women with SCI. Because existing research highlights the voices of health care providers and disability advocates (rather than disabled individuals themselves), we know little about what it is like for disabled individuals to seek and secure any kind of preventative health care within the contexts of the physical and social barriers described above. Even though we focus on women's gynecological health care in this article, we hope that our findings can hint at the physical and social contexts that all disabled individuals face when seeking any type of preventative health care and the ways in which the ADA has not been able to provide a barrier-free health care environment for women with SCI.

Conceptual Framework

Abercrombie et al. (2001, p. 117) define embodiment as "the mode by which human beings practically engage with and apprehend the world." Merleau-Ponty (1962, p. 206) also suggested that the "lived body" is a location of meaning and identity as well as a material entity: "We are in the world through our body, and … we perceive that world within our body." While the objective, physical body can be an object of intellectual inquiry, so can the more "subjective body of personal experience" and also body image as individuals negotiate "identities, experiences and social relationships" while living in/with particular bodies (ibid.; see also Turner, 2001, p. 253). Turner (2001, p. 253) additionally argues that we must look at the "governmentality" or production of bodies within society — i.e., the social rules, constraints, and barriers put forth for how we should define and engage in bodily experience. The social barriers erected around these bodies tell us exactly how "abnormal" those bodies appear to others and how little we know about bodies that do not fit with social rules. Hughes and Patterson (1997) and Thomas (1999) further remind us that we need to pay attention to the embodied experience of impairment while also paying attention to the social barriers associated with impairment. As Thomas (1999) explains, impairment is not a fixed property of a person but, rather, a 'social relational' entity, which means that how one lives with a physical impairment is more telling about what an impairment truly is for a person than any material reality of the body.

A feminist disability perspective informs this work. A feminist disability perspective emerges from the premise that disabled women are both women and disabled persons and, therefore, both gender and disability shape their thoughts and experiences (Deegan and Brooks, 1985; Lloyd, 2001; Wendell, 1996). Disability can shape the way in which women might experience gender and vice versa, in that gendered meanings and experiences are filtered through the context of having a disability as much as the meanings of and experiences of disability are filtered through their gendered social contexts (ibid.).

These ideas set the stage for looking at the more embodied experiences of disabled women, and separating out the material body (e.g., impairments and physical capacities) from the more embodied (subjective) experiences of disability and gynecological care and the negotiations that women might have with doctors about both their disability and preventive care. It also helps us understand particular gaps in existing ADA regulations, for the ADA was implemented to deal with lack of fit between impaired bodies and the physical environment, and not implemented to deal with the various ideas and misconceptions that health care providers and others might have about disabled bodies or women's need for preventive gynecological care. We return to these ideas in our conclusions.

Method

Design and Procedures

Most published research on women's experiences of SCI is based on survey research or descriptive interviews that utilized more closed-ended than open-ended questioning techniques, lab-based research (or research based on quantitative data collected in a rehabilitation facility), or write-ups of clinical practice (Hammell, 2007).1 Ultimately, we lack knowledge on how women with SCI actually define or feel about their everyday health experiences or how they seek and secure gynecological health care post-injury. A phenomenological approach allows for a more inductive approach to research, and an exploration of topics about which we know little (Creswell, 1998; Brown et al., 2006). This approach assumes that "knowledge begins with a description of the respondents' experiences" in their own words, and that "[r]eality is only [found] in the meaning of the experience [for] the individual" (Brown et al., 2006, p. 122). Consequently we allowed slightly different conversations across interviews because we let participants determine the types of topics that they brought up once we asked them general questions. This approach prioritized participants' understandings of their own lived experiences as well as their self-reflections about what was important about their experiences.

The sample for this study was recruited from an original interview study that included both men and women, and concentrated on issues of access to healthcare and independent living ("Community Living after Spinal Cord Injury: Models and Outcomes"; R01#1HD43378, funded by the National Institutes of Health; PI: Lysack). All participants in this previous study granted permission to be contacted for future research and, therefore, the list of participants from the previous study became a sampling frame for the current study. After multiple attempts, we were able to contact 27 of the 44 women (61%) who participated in the original study via phone. Of these 27 women, 24 (88%) agreed to participate in our follow-up study on "women's health and SCI," and we were able to schedule in-depth interviews with 20 out of 24 women who volunteered for the project (83% of the volunteers, but only 45% of the original sample).

Table One: Background of Study Participants
Background Characteristic      
    Mean Range
Age   46.75 22 — 66
    Frequency Percent
Ethnicity African-American 8 40
  White 11 55
  "Mulatto" (Mixed Race) 1 5
Education < High School 4 20
  ≥ High School 16 80
Marital Status Never married 8 40
  Married 7 35
  Divorced 4 20
  Separated 1 5
Major Source of Income SS/Disability 12 60
  Combo (SS and other) 4 20
  Other sources 4 20
Health Insurance No 1 5
  Yes 17 85
  Not asked 2 10
Self-Rated Health Excellent 2 10
  Good 12 60
  Fair 5 25
  Poor 0 0
  Not asked 1 5
INJURY-RELATED DATA      
    Mean Range
Time Since Injury (in years)   19.5 3 — 41
    Frequency Percent
Injury Type Paraplegia 9 45
  Tetraplegia 11 55
Cause of Injury Automobile accident 10 50
  Pedestrian auto 2 10
  Fall 2 10
  Gunshot wound 4 20
  Sports 1 5
  Spinal Cord Disease 1 5

Participants

The data for this study were gathered using in-depth interviews with women (n=20) living with SCI in or around Detroit, Michigan. The average age of the sample was 46 years (range: 27-66), and they had been living with their injuries for 19.5 years on average (range: 3-41 years). Slightly over half of the interviewees (n=11, or 55%) were European American/White while eight (40%) described themselves as African American/Black and one (5%) self-identified as "Mulatto" (Multiracial). At the time of the study, eight women (40%) reported they were never married and seven (35%) married with the remainder divorced or separated. About two-thirds (65%) had at least a high school education and two women (10%) worked part-time in paid employment. The major source of income in this sample was Social Security/Disability. Nearly all (85%) had some form of health insurance and just over half (60%) reported their health was "good". With respect to injury type, just over half (55%) were women with paraplegia, and the remainder had tetraplegia. Together, automobile accident and pedestrian-auto accidents were the most common cause (60%) of injuries followed by gunshot wounds (20%). More details are found in Table One.

The women in this study have a broad range of gynecological health experiences (see Table Two). Fifteen of the 20 women (75%) reported a pregnancy at some point in their lives, and three women (15%) delivered a total of 6 healthy newborn babies after their spinal cord injury. Eight women (40%) reported that they had gone through or were going through menopause at the time of the study. Five women (25%) had a hysterectomy; four of these hysterectomies (80%) occurred post-SCI. While it was not an eligibility criterion for this study, most women (13 or 65%) were in their "late reproductive years" because they were aged 35-45 at the time of interview (Freeman et al., 2001). Most women in our sample were looking back over decades of gynecological health experiences that happened both pre- and post-injury.

Table Two: Selected Gynecological Experiences of Study Participants
Case Age Currently Menstruating Children Pre/Post SCI Hysterectomy/ Other Reproductive Surgery Menopause (self-report)
1 27 No None No No
2 29 Yes None No No
3 31 Yes None No No
4 36 Yes Pre No No
5 37 Yes Pre and post No No
6 37 Yes Pre Yes Yes
7 39 No Pre No No
8 40 Yes Pre No No
9 44 No Post No Yes
10 48 No Post Yes Yes
11 48 No Pre Yes Yes
12 54 No Pre Yes No
13 55 Yes None No Yes
14 56 No Pre No No
15 57 No Pre Yes Yes
16 57 No Pre No No
17 58 No Pre No Yes
18 58 No None No Yes
19 58 No Pre No No
20 66 No Pre No No

Data Collection and Measures

Each woman completed a single in-home interview, lasting 2-3 hours on average. The interviews were in-depth and ethnographic in style (Spradley, 1979). This is the preferred method of inquiry when central concepts (e.g., perceptions of gynecological health, inaccessibility of health care, and accompanying health behaviors) are underdeveloped in a given population (e.g., women with SCI). To adhere to this approach, we kept our interviews "conversational" (Rubin and Rubin, 1995) and relied on mostly open-ended questions in order to understand the meanings of the "lived experience" (Creswell, 1998) of this unique group of women, who lack movement and sensation in many parts of their bodies but need to manage a wide range of both regular and unique gynecological health experiences. While the larger project was framed around certain topics, the women themselves highlighted what was most important about their own gynecological health once they were asked general, guiding questions.

We kept our interview guide as "loose" as possible, yet we included semi-structured questions and utilized a few standardized measures during the interviews, specifically to prompt or "target" women's reports of gynecological health and health-seeking behaviors and so that our data paralleled existing studies of able-bodied women (Rubin and Rubin, 1995). Subsequent probes aimed to gather more information in an open-ended way, such as "Can you tell me more?", "Give me an example," "How did you feel about that?", and other questions related specifically to women's latest responses. Study interviewers (two research team members) had more than 7 years of experience conducting interviews in the context of women with disabilities, including SCI, and received additional training about gynecological health interviewing from the first author. Both interviewers were able-bodied. Training coupled with familiarity with this study population ensured that key topics discussed during interviews were recognized and pursued with additional probing questions, but also dealt with sensitively.

The interviews also included sets of questions about overall health and physical functioning, accessibility of doctor offices, interactions with health care providers, gynecological health-seeking behaviors, and complementary and alternative medicine use. In this paper we report only on the women's gynecological healthcare experiences and related attitudes and practices, however. Approval for the study was obtained from the Institutional Review Board at Wayne State University and all research participants gave their informed consent prior to data collection. Each woman received $35 at completion of the study interview.

Data Analysis

Study interviews were tape-recorded and one of the four research team members transcribed them all. The authors randomly checked 5 of the 20 transcriptions each against the tape-recordings for accuracy and found a very nearly perfect correspondence. Analysis began with a close reading of all interview transcripts to identify major patterns and thematic categories. Major ideas were noted and formed the basis for early discussions about the most significant data revealed in response to our study questions. Once agreement was reached on this set of major themes or topics, each transcript was systematically reviewed with the goal of identifying instances of each pattern and assigning each a descriptive label, or code. This step involved traditional methods of "cutting and pasting" from interview transcripts in accordance with each topic/code (Creswell, 1998).

Overall, our work followed a "constant-comparison" method of analysis (Glaser, 1978). Data were compared and contrasted with each new section of data, and were coded and re-coded as patterns and tentative interpretations emerged. For instance, groups of quotes were recoded again to highlight the specific meanings of under each code, to flush out similarities and differences among interviewees. For the purposes of this article, we initially extracted data that spoke to the barriers to gynecological care and then eventually recoded data by whether it dealt with physical (structural) barriers and social barriers to care. In the last coding steps we concentrated on the lack of education and training for providers as one type of social barrier. Having multiple coders was instrumental during the later coding steps in moving from categorizing data to thinking abstractly about similarities and differences in experiences across our sample of women with SCI, as well as the similarities between the women in our study and able-bodied women in other studies. While our systematic analysis helps to support our interpretations of the meaning of the data we share in this paper, the ultimate validity of the data must be judged within the wider context of the rich descriptions offered (Glaser, 1978).

Results

High, Narrow and Short: Exam Tables Remain a Structural Barrier to Gynecological Care

Our results confirm what past literature has already confirmed: women with physical disabilities do not receive comprehensive gynecological health care (Kaplan, 2006; Becker et al., 1997; Nosek, 2001); for example, Kaplan (2006) already highlights women's difficulties in finding gynecologists with exam tables that can accommodate a disabled body. Our interviewees were also very quick to cite the inaccessibility of exam tables as a key reason why their gynecological care was incomplete (see also Dillaway and Lysack, 2014a, 2014b). We review participants' exam table stories here, to reiterate the importance of this structural barrier and illustrate how this barrier helps creates the inaccessibility of care for women with spinal cord injuries. We use limited space in this article to present our findings on this structural barrier, however, because we believe that the lack of provider education and training may be at least as important as any structural barrier, and may reinforce the meanings of structural barriers that are in place. Thus, we present participants' exam table stories briefly below.

Lena (age 66, 17 years post SCI) suggests that she was an in-patient at a local hospital the last time she received a PAP test (approximately 4 years before our interview). Rachel (age 36, 7 years post SCI) also reported that it had been 7 years since she had had a Pap test (right after her injury, before her discharge from the hospital, on a hospital bed).

They had to sit me, [and then] they had to flip the bed pan over and set my bottom up on the bed pan and I had a PAP smear like that. [I: So you were facing which way?] Lay[ing] in my bed and they had to lift me and lift me onto the bed pan and did it like that, that's how the doctor did it from my bed. I was at [a local hospital] then. [There is] nothing accessible for women, you know what I'm sayin, in wheelchairs… . I don't really honestly know where to go to where they are accommodating to me.

Rachel continues on about her lack of comprehensive gynecological care and her concerns about exam tables in OBGYN offices:

… . I need to have a PAP smear… . 'cause you supposed to have it once a year, right? [I: Yeah.]… . And then I was taking this medicine that was letting me have a lot of yeast infections… [so] I really do need to be checked… . [My doctor's table] is up at least this high [motions how high the table is], I'm scared to even risk it. [I: Yeah. I don't blame you.] What if I have start having spasms up there and hurt myself? I'm not going to put myself in that position… .

Allison (age 29, 13 years post SCI) similarly asks, "How am I supposed to get undressed on a table? You have 2 nurses in there trying to help me so I don't fall off the stupid thing." Even with help from the two nurses, it is difficult for Allison to maneuver the basic steps necessary to receive the exam (getting undressed, lying still on the table, keeping her legs in the stirrups, etc.).

"[I]t's up high, which is very convenient for the doctor….very narrow [and] it's very short … and your legs hang off it…so there's no way for me to get any kind of balance, my legs are hanging — there's nothing to put them on. [Then during the exam] they have the stirrups and then they have to hold my knees and stuff. [I: To support your legs?] Yeah. [I: How does that make you feel?] Uncomfortable.

Kelsey (age 31, 9 years post SCI) further commented, "I've never been anywhere where they were accessible. I don't understand why they are so small. The tables are so thin and high and there are no sides. It's a good thing I have upper body strength. [My husband] has to help hold my legs." But Damita (age 44, 25 years post SCI) stated, "That's one of the reasons I don't go, um, often. Because the examination table is not accessible. That's a huge problem… . and I hate that with a passion."

Mabel (age 58, 26 years post SCI ) suggests that there are actually fewer structural barriers to her care than in the past2 (and she and two others in our sample infer that this improvement was because of ADA regulations and rules about "barrier-free" building access), but that the exam table remains a major reason for women's incomplete gynecological care. When Mabel does receive gynecological care, it is because there are many individuals willing to help her transfer from chair to table, and hold her on the table as well.

I've got my own transportation, that's totally accessible. The buildings are all accessible… . [The exam table is] the only problem that I have because I can't transfer and the table is so high. [I: When you do go [to the doctor], who puts you up on the table?] My doctor has assisted with others, or 2-3 other women, but it takes at least 2 people, sometimes 3.

Rachel also confirms that "Unless you have … two or three people and they lift you on the table and then [hold you] once you get up there" then gynecological care is inaccessible. Kendra (age 31, 14 years post SCI) and Lana (age 58, 40 years post SCI) reported bringing someone to their appointments so that they could get care as well (although, in Lana's case, her quadriplegic status made it impossible for her to get to her appointments without being accompanied by a caregiver; thus the type of injury may have an effect on how women approach seeking health care). Living with SCI long enough made women like Kendra and Lana understand that they had to accommodate doctors' offices and doctors' routines; doctors and their office staff did not accommodate them.

Some women in our sample do not have the luxury of bringing helpers with them, however, and suggested that individuals at OBGYN offices and hospitals have sent them away at times, because of women's inability to transfer themselves to the exam table and provider discomfort about helping women accomplish the transfer. Allison was denied care at a local hospital and referred elsewhere since she did not bring helpers with her. Hospital staff referred her to an OBGYN office and "said, 'I'd have to find someone else'… . I told them, 'I don't have no help like that. I catch transportation and I don't have nobody ride with me.'" OBGYN offices told both Rachel and Simone (age 39, 7 years post SCI) that they could not have care unless one particular doctor was in that day; no other doctor was comfortable giving them care at those locations. At one point, Simone ran out of her medications and called for a refill and her particular OBGYN doctor was out of town; other doctors and nurses in the practice were unwilling to help her and she was forced to wait until her doctor returned to work. Thus, while some providers were willing to help interviewees overcome the structural barrier of the exam table and provide care to disabled bodies, women in our sample could not count on the existence of that supportive attitude.

The inaccessibility of exam tables is now well documented in the health care literature on women with disabilities, both in our study and in previous literature (Dillaway and Lysack, 2014b; Kaplan, 2006; Becker et al., 1997; Nosek, 2001). While the implementation of the ADA may have lessened structural barriers in many cases, ADA regulations seem to have had little effect on whether some women in our study can access gynecological care. For some, comprehensive care is still extremely hard to secure. While a few women in our study found OBGYN offices with exam tables that lowered (or in one case, a doctor who owned a chair that reclined and allowed one woman in our sample to receive a PAP test in an office chair), most interviewees were still searching for accessible tables. But, as we listened further to our interviewees, we realized that it was not the exam tables that caused the unavailability of care for women in our sample. We turn here to discuss the social barrier that we believe is critical in any understanding of why gynecological care remains incomplete for women with disabilities.

"Most of Them Are Amateurs": Lack of Education and Training among Providers

In most of our interviews, it was not only the inaccessibility of the actual exam table but also an array of social barriers that caused the inaccessibility of gynecological care. We have started to make this argument elsewhere (see Dillaway and Lysack, 2014a, 2014b), yet, in looking even more closely at our data, we find that the primary social barrier that women in our sample discussed is providers' lack of education and training. Alongside inaccessible exam tables, women in our sample confront providers' lack of awareness about how to handle or care for their disabled bodies and, at times, their general discomfort about disability as well. Our data suggest that this general lack of education among providers creates as much — if not more — of a barrier to care as any exam table (and reinforces that structural barrier as well). Thus, we use this paper to highlight what we see as a major gap in education and training of medical providers: how to think about and care for bodies that might not fit an able-bodied norm.3

More than half of the women in our sample discussed providers' lack of understanding and training about how to provide gynecological care to a disabled woman. Lena (age 66, 17 years post SCI) tells the story of her first gynecological exam post-injury:

The one that I had done before, the first one I had done — it was horrible. [I: Why was it horrible?] First of all they had trouble and couldn't get me up [on the table] and they called a couple people in and then a couple more people and they couldn't get me up and then I had so many people there… . It's just the fact that most of them are amateurs. [our emphasis] They pulled me this way, that way, you have to tell them really. So, not only do you have your injury, but you're trying to get your life back. You're trying to be healthy [by going to the doctor], but they don't look at it that way, you know? The one that I had done before, the first one I had done — it was horrible. [I: Why was it horrible?] First of all they had trouble and couldn't get me up [on the table] and they called a couple people in and then a couple more people and they couldn't get me up and then I had so many people there… . It's just the fact that most of them are amateurs. [our emphasis] They pulled me this way, that way, you have to tell them really. So, not only do you have your injury, but you're trying to get your life back. You're trying to be healthy [by going to the doctor], but they don't look at it that way, you know?4

Lena explains how frustrating it is to seek care but then deal with a complete lack of knowledge among providers and their office staff about how to transfer a disabled body. She suggests that "most of them are amateurs" and lack the training to be able to transfer a body, let alone to complete a physical exam. In this case, hospital staff wanted and tried to help but did not know how, and proceeded to make Lena feel upset, uncomfortable, and frustrated in her efforts to seek preventive care. Lana (age 58, 40 years post SCI) also described a situation in which office staff tried to help her transfer and then stay on a table, but staff did not know how to handle her body.

And as far as the accessibility issue again, they don't have things set up. [At a local hospital] [t]hey lifted me onto the table and put me on my side … . And so they were finishing [the exam] [and] this woman … was laying on my legs but she was so heavy that when she went to stand up straight she pushed off my leg and I went, "Hhhhhuuuuh!!" and my leg hurt. I had to have X-rays, I thought she cracked my bone. I thought, "I'm not going back there," and I thought, "You know, don't lay on someone's legs and don't push off them." She shocked me. In the X-rays it was not broken, [but] they did do a bone scan where they showed a hair line [fracture]."

Lana's story suggests that providers and their staff are not trained to give safe and basic preventive care to disabled bodies. Terry told a similar story of being on an exam table and having a provider let go on her leg, and her leg slapping against the table; in Terry's case, she "almost broke her ankle." Not only did these providers lack knowledge about transferring bodies from chair to table, but they were also unfamiliar with how to safely hold disabled bodies on a table during an exam. While occupational therapists, physical therapists, and accompanying physicians in rehabilitation facilities might receive training about how to transfer bodies from chair to table and back, it is clear from these stories that their other providers may lack this training. Consequently, when women in our sample try to go for preventive gynecological care, they must face a lack of knowledge and training and the variety of provider-patient interactions it might create. While all women in the sample did not face physical risks like Terry and Lana, they still had to be ready for a variety of uncomfortable interactions with providers and office staff at the very least. According to our interviews, providers and their office staff (as well as hospital staff) fumbled over handling disabled bodies on a regular basis, because of a lack of education and training.

On the other hand, well-meaning doctors sometimes asked individual women in our study for information on how to handle their bodies. Alicia (age 29, 13 years post SCI) tells of a doctor who wanted to help but was honest about the fact that he did not know how.

…[Sometimes] they're afraid of liability. And other times they're willing to jump right in. I had a doctor who was like: 'Hey, how do you want me to lift you up?' He … was ready to jump right in. He didn't even bother to go for a nurse. You find it both ways… . [T]he reason he was so helpful to jump right in is he has a spinal cord-injured sister so he's very familiar. [I: That must have made you feel good.] Yeah. [I: Did you know that before?] No, I didn't. It wasn't until after he [transferred] me over and I think I was just like, "Wooow," [and he] was like: 'Oh, it's okay, my sister's in a chair, I have an understanding of what you're going through." [I was] much more comfortable, I like that. [He] is a bit more understanding and understands what I'm going through.

The fact that Alicia's doctor was willing to learn how to transfer her body made care much more accessible but this was brought on by his personal experience with his sister's disability (a precursor of sorts to interacting positively with Alicia). An initial personal understanding of disability allowed him to be comfortable about learning from Alicia and providing her care.

Other women discussed being denied care because of doctor's reticence about caring for disabled bodies. Rachel (age 36, 7 years post SCI) discussed how her doctor told her that she "was a little nervous [to give me an exam] because she had had a lady in there that once she got her up there she started having spasms. And up that high there's not that much space on there." Rachel's doctor was very honest about her anxieties and lack of knowledge, but this meant that Rachel did not receive care from this doctor; this doctor referred her elsewhere. Allison (age 37, 9 years post SCI) also described that, in her experience, when doctors lack understanding or are new to treating disabled patients, they just ask questions and forgo providing care: "They don't do nothin' but ask questions, they don't do no examination… . They just ask you what's goin' on with you, what's up, what's goin' on… . What's new? What's old? They just ask you questions." They are afraid or unwilling to do an actual physical exam.

Stacie (age 48, 17 years post SCI) reports receiving more comprehensive care than many of the women in our sample, but tells a common story about dealing with doctors and office staff who are not knowledgeable about disability. She finds that, sometimes, providers are not even aware about whether their offices are ADA-compliant.

Especially if it's a new doctor I always call ahead to find out [about the infrastructure of the office]. [I: What do you find out? How low the tables go?] Yeah… . Or if the office is accessible or, yeah, or they say, "Oh, yeah, we're accessible," and you get there and your chair doesn't even fit [through the office door]. Hahahahaha… . [I: So, no [exam] for you today?] Right.

Thus, even when they tried to be proactive and call ahead to find out about a new medical office, sometimes women in this study did not know how accessible a health care practice would be until they got there. Stacie's story highlights how office staffs' lack of knowledge about the accessibility of their office further creates barriers to care, and how little individual medical practices may know about being ADA-compliant.

Dealing with "New" Doctors and Holding onto "Good" Ones

Having to deal with "new" doctors was also a theme in our interviews, and women talked at length about how doctors who were unfamiliar with their SCI were unable to provide quality care. Justine (age 48, 5 years post SCI) explained the reasons why she does not seek out gynecological health care anymore and concentrated on describing the lack of understanding that providers have about her disability.

I haven't seen my OB GYN [since my injury] … . I just know it's more difficult for them. [I: What's more difficult?] …for anybody to deal with [me,] who has to help me with anything. Like I had to test my bowels at [a local hospital]. They had to strap me onto this toilet and you can tell I make it more doubly hard. They were nice there. But I don't think a lot of them are prepared. They say, "Can you stand up? Can you walk? Can you get up on the table?" It's like the doctors don't document that you're paralyzed and every time you go in they have to ask you.

Terry (age 40, 13 years post SCI) shared a similar story.

I hate going to a new doctor because everyone wants to play the "Let's poke [Terry]" [game]… . "I'm going to poke her just right that she's going to get up and walk because she's been fakin' for 13 years!" They don't understand. I have to go through losing my legs and feeling that inside all over again when at the end of their little test: [After their tests they say,] "No, … you're paralyzed." [And I say,] "Really! … never knew that." Ha-ha. But, I mean, there's so many doctors that go through that each time. I don't really want to go through that again. [I say,] "Look, I just came to you to find out what's going on with my bladder." I like it that I have a urologist that knows more than I do… . It's really great to have somebody that is that fantastic but most of my doctors aren't.

Terry's and Justine's situations suggest that some doctors do not know or understand enough about disability to even trust that it is real, reinforcing ideas about its abnormality in society. Terry also explained further that doctors do not understand that disabled individuals have "real lives" and do not want to just lie in bed; disabled individuals want to be living full lives and need the full range of regular, preventive care. Terry declared, "[T]he barriers [to care] are 'stupid people'. Just people that believe [that] because my legs don't work my mind doesn't work or [that] my hearing is bad. I'm always trying to figure out how they are related!" Terry and Justine make it clear that they have to deal with this lack of understanding about disability every time they go to a health care facility, especially if they are encountering office staff or providers who are not accustomed to their case. Justine's providers at a local hospital told her that they had "never seen anyone with my problems. I have no muscle control." Hospital staff members made sure to cement notions of disability as abnormal and hard to care for but, ultimately, their comments stemmed from a lack of knowledge and experience, and a general discomfort about Justine's disability.

Providers' general discomfort with and/or lack of knowledge about how to physically handle disabled bodies made women very careful to stay with "good" doctors when they found them. Simone (age 39, 7 years post SCI ) talked about wanting to move to Atlanta, but had finally found good doctors who understood her condition and knew how to handle her body, and did not want to go through the experience of interacting with new doctors about her disability. When women like Mabel (age 58, 26 years post SCI) found "good" doctors who were understanding or willing to learn, they sometimes followed them from practice to practice in order to avoid starting up with a new doctor. They knew that educated and/or teachable providers were few and far between and, as in Mabel's case, following these "good" doctors from practice to practice (or hospital to hospital) became a "necessity." Nina (age 55, 8 years post SCI) even found an OBGYN who had a chair that turned into an exam table, and began going to this doctor on a regular basis because of the accessibility of her office.

She's the only doctor who can actually give me any kind of physical. [I: She is the only one who actually has you out of your chair?] Yep… for any kind of examination. [The doctor] said, "Well, you probably don't have to come for a couple of years," and I said, 'This is the only place I get a physical!' [I: Yeah, oh, yeah? Is she [surprised]?] No, she knows. She knows.

Nina knows that continuing to visit this doctor is her best hope for care, and the doctor also understands that she provides care that is not the norm.

Educating Doctors Themselves

Stacie (age 48, 17 years post SCI) realized early on that providers' lack of accommodation of her disability was, in large part, due to lack of knowledge and understanding. Thus, she suggested that sometimes women with SCI have to go so far as to demonstrate and teach doctors about what they need (essentially taking it upon themselves to educate and train providers about disability).

Uhh…sometimes you are teaching them. Because you have this disability and you know they don't see that as often as they see what is considered normal with able-bodied people. So sometimes you're educatin' them… . [I]t's something that they might not necessarily want to do but that's their job and … you need that assistance! … Um, I remember in my experiences with a doctor, a gynecologist… .I was talking to her about [hyperreflexia or autonomic] dysreflexia, and she didn't know what that was. So I went to my spinal cord doctor, and he drew up a bunch of information that my gynecologist, uh, might not be familiar with in treating a person with spinal cord injury. And that helped out a lot. [I: Now you sought out information from one physician to inform another physician?] Yes. Another physician, yes. [I: Was your OBGYN open to that?] … . She was very open and, you know, very, um, proud that I would do something like that. That I knew enough about, you know, my injury, my body, yeah, to go to my doctor and share this information… .

Doctors like the one above often learned to accommodate Stacie over time after being shown how (although this was not always the case). Stacie realized very quickly how important her work to educate doctors was.

It's not, it's not, it's not a strain for me, you know, 'cause, well, I care enough about me to have you do me right. I've had friends who had spinal cord injury and go to the hospital and they say, "The nurses didn't know how to do this for me, you know, the doctors didn't know that," but, see, they don't know everything, I mean, they are the doctors but they're not God, right!?! So sometimes you have to tell them, "I need to be turned every so often," or "I'm not able to do my own cath," [or] "I need you to do that for me," you know what I'm saying? Or "I feel like my bowels are impacted." I mean, it's something that they might not necessarily want to do but that's their job and … you need that assistance! So, you have to speak up to people a lot. Even in the medical field, especially in the medical field, because I found, especially in the initial stages of my injury, they would come into my room in teams and talk about me like I wasn't even there or something, or like I was dead or, you know? Yeah! Yeah! Without even saying, "Good Morning!" You know, they come in the room, you know, and they just start talkin' about you… . Yeah, so it's a little bit annoying but…that's the way they do… . You ha[ve] to take steps with your doctor in order to get the care that you [need].

At another point during her interview, Stacie referred to this education work as "sensitivity training" for doctors, showing herself to be very cognizant of the teaching work she took on. After we concluded data collection, Stacie agreed to come along with members of our research team to present our findings to medical students at two separate universities. She shared additional information with students as we gave presentations to medical student organizations at these two universities and allowed medical students to ask her questions while she was there. To Stacie, the lack of provider education and training was the key barrier to her gynecological care and she was determined to lessen this barrier.

It should be noted here that Stacie was not the only one in our sample who took on the role of teacher. Priscilla (age 57, 39 years post SCI) also suggested that,

[Y]ou can't pussy foot around or anything. If they're going to do a pelvic exam and they're going to trigger a spasm, you've got to tell them that, or let's say your bowel movement wasn't quite right in the morning and you're having a pelvic exam that might trigger it, you have to let them know. [You have to be] up front with them [and] that has to do with my getting older too and being able to, getting over that 'doctor' thing, … being able to talk to them like people and not like someone who's up on a pedestal… . [I say,] "I know my body, I know how my body responds, you have people in here who don't [know my body], you've got to treat me differently than everybody else [other patients] in here."

The work to educate providers about disabled bodies was extra work that some women learned to engage in over time, specifically to garner good care for themselves. If they engaged in this work, they could at times overcome the inaccessibility of exam tables and secure care but this happened at the level of the individual practice and doctor and was a short term success. The efforts Stacie, Priscilla, and others put into educating doctors, as well as the efforts others put in to call ahead to find out about the accessibility of offices, to avoid "new" doctors, and to stay with "good" doctors — just to guarantee individualized care — illustrates the extent to which individual doctors and practices lack knowledge and training about disability.

Discussion and Conclusions

When asked how things had changed over time since her SCI, Candace (age 57, 40 years post SCI) suggests that the "only thing that changed was all the barrier-free [conversations] and then the ADA laws, you know." Candace suggests that doctors' perceptions have not changed and, if anything, women receive less help after their injuries from rehabilitation facilities than in the past. She proposes, "in today's world the Rehab process is so short-term. These people do not even have time to adjust to what happened to them. I was in Rehab for 3 months. Now they're in Rehab for 3 weeks. They throw so much at them." There is little effort to make sure that women will receive the care they need after going back to their "real lives". Thus, women leave rehabilitation settings quickly and end up spending the rest of their lives seeking care from providers who do not have as much knowledge or training.

Terry (age 40, 13 years post SCI) declared that while the ADA "was supposed to have been the best thing in the entire world," most ADA regulations deal with access to "bathrooms" and "business meetings" and do not address the social barriers that women face in trying to seek gynecological care (or any other kind of preventive care for that matter). Like Candace, Terry suggests that, upon leaving rehabilitation settings, women are handed information about how to make their bathrooms accessible but not about much else. As much as the implementation of the ADA has accomplished in making buildings accessible, then, barriers to gynecological care still exist for the women in our sample.

While many women in our sample found good doctors eventually, all but three interviewees discussed the lack of education and training among providers as one of the primary social barriers they still faced. And while they also discussed the inaccessibility of exam tables at length, their narratives about lack of education and training were as detailed as any description of the exam tables. Access to gynecological care was not dictated completely by the exam table, but it could be dictated by lack of education and training of providers, if providers were unwilling or unable to think about safely caring for disabled bodies and unwilling to help women deal with the structural barrier of the exam table. Additionally, we suggest that perhaps the structural barrier of the exam table still exists because of providers' and medical office staff members' general lack of understanding about what it means to be ADA-compliant or to provide full and equal access to care. Thus, the lack of understanding of and knowledge about disability may lead to the continuation of some structural barriers in health care, as well as providers' and staff members' inability to help women circumvent those structural barriers. After listening to women in our sample, we believe that the lack of education and training may indeed be their primary barrier to comprehensive gynecological care. We urge other scholars to explore this possibility further.

It is important to note here that lack of education and training is a multidimensional barrier itself, and this barrier also led to multiple health care outcomes for women in our study. In some cases, lack of education and training meant that providers and medical office staff did not know whether their offices were physically accessible to disabled women and could lead to women's receipt of incorrect information about whether they could receive care at that practice location. At other times lack of education and training could lead to the mishandling of women's bodies during a transfer from chair to table, or providers' anxieties over what might happen when a disabled body was on their exam table (and a subsequent refusal of care and referral to another location). A few women in our sample were denied care completely because of providers' unwillingness to touch or care for bodies that were foreign to them. At other times, a general lack of education and training among doctors meant that visits to "new" doctors (who were not familiar with their cases) were uncomfortable and unproductive for women in our study, or that women put extra efforts in to stay with "good" doctors who were willing to learn and/or care for disabled bodies. Finally, in some cases, the lack of education and training meant that individual women had to engage in extra efforts to inform and train well-meaning doctors and their office staff about how to deal with their bodies. Thus, the way in which this social barrier could manifest was somewhat unpredictable at times and differed from woman to woman.

After listening to women in our study and thinking more deeply about the inaccessibility of gynecological care, as well as thinking about the connections between individual interviewees' situations and ADA regulations, we propose that ADA legislation is not always in the minds of individual medical practices or providers, especially those who primarily provide preventive care to able-bodied women. OBGYN providers and office staff do not have disability in mind. It may not even be in the minds of many disabled individuals on a daily basis (only 3 out of 20 women mentioned the ADA, unprompted by us, and these were all women whose SCI had occurred before the passage of the ADA). Perhaps a function of time and the narrowness of the law is partially to blame, but also the things that mattered most to our interviewees were providers' understanding of their disability, acknowledgment of their health care needs, and providers' willingness to work with them and care for them — things that are very difficult to legislate because they involve cultural change and hands-on medical training that is currently lacking. When we think about what women in our study really wanted, we understand more fully why the lack of education and training seemed like their primary barrier, almost more important than exam table barriers, because the lack of education and training impacts how they are treated as human beings and as bodies, and affects the everyday interactions they have with providers and their staff. The ADA itself may never be able to achieve the cultural change in the medical community that women in our study desire, but our findings highlight how people with disabilities remain at a disadvantage in everyday interactions with medical providers as well as in structural access to health care, and that those everyday interactions matter.

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Endnotes

  1. A few important exceptions do exist. For instance, Wong (2000) did in-depth interviews, and Nosek's work (1992, 2000, 2001) is based partially on her own experience as a disabled woman.
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  2. Kendra (age 31, 14 years post SCI) actually disagreed and suggested that there are still plenty of problems with building access when she tries to visit the OBGYN. At the end of our interview with Kendra we asked if she had any final comments and she declared, "I just want them to fix all of these f-in buildings." A few other women noted trouble with doors that swing outwards or exam room doorways that could not accommodate wheelchairs. But, for the most part, we heard less about these other structural barriers and more about the inaccessibility of exam tables and other diagnostic medical equipment (e.g., scales, mammography machines, X-ray machines). By far, women talked the most about inaccessible exam tables when asked about their access to gynecological care.
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  3. In the way that we are conceptualizing this social barrier, lack of education and training could also affect how OBGYNs deal with aging bodies, overweight bodies and, really, any physical body that does not fit the norm. Thus, while we are discussing women with SCI in this article, we hope that our findings allow a broader health care audience to think about the range of bodies about which providers are lacking knowledge and training.
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  4. At this point in the interview, her husband walked through the interviewing room and said in passing as he left, "You're all alone in that situation and no one tells you what to do."
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Copyright (c) 2015 Heather Elise Dillaway, Catherine L. Lysack



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