A Primary Care Provider’s Guide to Social Justice, the Right to Care, and the Barriers to Access After Spinal Cord Injury Free

Margo is a 26-year-old African American female with a C7 American Spinal Injury Association Impairment Scale (AIS) B SCI sustained in a motor vehicle accident 3 years ago. She comes in to see her recently established PCP with unexplained episodes of autonomic dysreflexia despite intact skin and regular bowel and bladder care. Her PCP, Dr. Gold, stands at her computer to do her documentation during the visit and physically talks down to Margo. Dr. Gold runs blood tests, and the results indicate that Margo is pregnant. Without first determining Margo’s support system, abilities, and independence, Dr. Gold begins to question Margo in a demeaning way by asking if she will be able to take care of her child alone, if she is fit to be a parent, and if she can financially support a child.

People living with spinal cord injury (SCI) face remediable obstacles to care in a variety of health settings, including primary and specialty care. There is evidence that this population receives less thorough care than their nondisabled counterparts.¹  Obstacles include environmental barriers in the form of inaccessible medical buildings, inadequate space, lack of specialized medical equipment,²  and limited academic preparation resulting in a lack of knowledge of SCI health care issues among primary care providers (PCPs).^2–6  Delivering lower quality primary care to people with SCI compared to those without disability creates a social injustice with dangerous consequences. This inequity in health care for people with SCI calls for providers in primary care settings to raise their awareness of social justice issues, barriers in their own practices, and how they may remediate them.

Social justice is defined as advocating for “full and equal participation of all groups in a society that is mutually shaped to meet their needs.”^7(p3) A socially just society assures that resources are equally distributed, and it fosters an environment of physical and psychological safety for its members.⁷  Being an agent of social justice is an important part of multicultural competence⁸  and requires incorporating the needs of all individuals regardless of race, culture, gender, sexuality, or ability status. Incorporating social justice into practice will result in more effective rehabilitation plans, greater retention of clients, and higher client satisfaction ratings.⁹ 

The goal of this article is to frame well-documented barriers to primary care experienced by people with SCI as social justice issues and human rights violations. Understanding these persistent barriers as issues of social justice is critical to shaking complacency and causing meaningful change that will positively impact treatment of people with SCI. Primary care encompasses a number of allied health providers and services³ ; thus, the target audience for this article is all primary care providers, not just physicians.

First and foremost, primary care barriers exist because of limited academic exposure, preparation, and knowledge of SCI health care issues.^4,6,10  Delivering effective primary care requires medical knowledge of both SCI and secondary conditions that regularly present themselves and knowledge of the preinjury health history of a patient with an SCI.^11,12  Research has found that patients with an SCI reported their PCPs were not knowledgeable of the impact of the SCI on their overall health.¹ 

Physical access focuses on the immediate and surrounding environment of the clinic. Such barriers include inaccessible parking, entrances, doorways, bathrooms, and medical diagnostic equipment such as weight scales, examination tables, and radiographic equipment.¹³  Inaccessible equipment is far more often a barrier to care than is building accessibility.¹²  In 2010, the Affordable Care Act included provisions to amend section 510 of the Rehabilitation Act to address access standards for medical diagnostic equipment used by health care professionals.¹⁴  In 2017, the Federal Register published final rule regulatory standards to ensure that medical diagnostic equipment is accessible to, and usable by, persons with disabilities to the maximum extent possible.¹⁵  As of June 2019, these regulatory standards remain as best practice standards and have yet to be enforced by the U.S. Department of Justice.

Policy and procedural accessibility includes scheduling, staffing, and administrative resources.¹³  It is important for office leaders to embrace universal accessibility surrounding scheduling, staffing, and administrative resources.¹²  To ensure patient safety and to limit staff injuries, staff should be trained in methods of transferring patients with disabilities and how to properly use accessible equipment.¹² 

Research has found that patients with SCI reported rude and demeaning treatment by staff as a barrier that prevented them from seeking care.²  This may have been due to language used. Language conveys one’s attitude toward a group. Even medical professionals with good intentions, influenced by the medical model, may adopt a paternalistic rather than collaborative style when treating people with disabilities. They may utilize language in which they describe patients by impairments (eg, paraplegic) and fail to realize that the persons with disabilities are the experts on their own condition and needs.

Communication is a key factor in a successful relationship between care providers and people with disabilities. Poor communication of any kind, whether intentional or not, can result in a person feeling marginalized or dehumanized. Nonverbal communication can be equally, if not more, powerful than verbal communication. Eye rolling or a facial expression of disgust can speak louder than words and make a person with a disability feel unwelcomed. Communicating at the same eye level, whether sitting or standing, prevents feelings of being spoken down to. Most importantly, everyone in the primary care environment must commit to using person-first language, such as “person with a disability” rather than “disabled person,” “people with disabilities” rather than “the disabled,” or “person who uses a wheelchair” rather than “confined to a wheelchair” or “wheelchair bound.”¹⁶  Person-first language embraces the idea that a person comes first, not the disability. Care providers should speak directly to the person with disability rather than to someone accompanying them.

Medical professionals are not immune from holding negative attitudes about people with disabilities. Both negative (pity or inferiority) and positive biases (hero or inspirational) can impact perceptions, communication, and care. Biases may be conscious or unconscious. Specific to primary care, patients with SCI reported physicians’ preconceived notions of what is ailing them as reasons for less frequent preventive care visits.²  A specific example is when a provider believes that persons with disabilities are asexual or not interested in sex and does not initiate a discussion of concerns related to sexuality or sexual functioning. Providers who care for racial and ethnic minority groups living with SCI may also be biased by their stereotypes and assumptions (eg, lack of cultural competency).¹⁷ 

Intersectionality refers to the way a person can define themself in relation to two or more factors of oppression or marginalization.¹⁸  People with SCI who face barriers as a result of disability may experience additional burdens if they also identify as a member of another marginalized social group. Although the identity characteristics of a PCP in relation to the patient is not always clarified, research has shown that the intersectionality of certain groups within the SCI population, such as ethnic minorities and those with low socioeconomic status, are at a disproportionate risk of poorer outcomes than other groups.¹⁹  Ethnic minorities; women; and lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) groups experience health care disparities that create barriers to care. Health care disparities are attributed to factors such as education, housing, nutrition, and the quality of and access to health care even for those with health insurance.²⁰ 

Poorer outcomes for ethnic minorities include increased risk of secondary complications such as pain and pressure ulcers²¹  and psychological distress.²²  Factors such as institutional racism (the policies and procedures that contribute to racial disparities) can lead to institutional discrimination.¹⁷  For example, less follow-up care and guideline-adherent treatment are given to those of minority status.¹⁷ 

Women with SCI report significantly lower rates of routine and preventive care.¹  For example, less than 40% of women with an SCI report receiving Pap smears in the previous 3 years due to a lack of accessibility.¹  This could be because of factors such as a lack of attention to reproductive and gynecological health care for women with SCI. Health care providers should emphasize the importance of routine gynecological procedures and screenings.

Members of the LGBTQ community may experience stigma, inequality, discrimination, lack of knowledge by providers, and rejection from society or individuals. These experiences make it difficult for them to disclose gender identity or sexual orientation in addition to physical disability.²³  Providers may often lack knowledge to provide services to people with SCI who identify as members of the LGBTQ community.²⁴ 

The concept of social justice functions as a moral compass that can be used to guide reasoning and action in response to injustices.²⁵  Significant in this perspective is the understanding that many inequities are created by society and, more importantly, the knowledge that societies can do something different to encourage equality across social groups.²⁵  Although many health care providers do strive to make their practices accessible, people with SCI still encounter barriers to many necessary services. These barriers are social justice issues that are increasingly perceived as unacceptable by people with SCI, their support systems, and their care providers. Attention to removing such barriers is critical for ensuring rights to access, not just for people with SCI but for all people with disabilities.

Complementing legislation such as the Americans with Disabilities Act (ADA),²⁶  the United Nations (UN) offers numerous human rights instruments that are relevant to barriers experienced by people with SCI. Article 25 of the UN Declaration of Human Rights articulates rights to adequate health and well-being, including medical care and social services.²⁷  The Convention on the Rights of Persons with Disabilities (CRPD) is perhaps the most comprehensive human rights instrument in terms of its relevance to the broad spectrum of barriers experienced by people with SCI, as it contains numerous references to rights to health, rehabilitation, and technology.²⁸  The right to health and the related right to science in the form of accessible medical technologies are critically important for the well-being of people with SCI. Greater understanding of human rights and disability rights by health professionals can generate meaningful and effective policy change to support improved SCI care.²⁹  A partnership between people with SCI and their care providers exemplifies a social justice framework in action to achieve improved access to treatment outside of specialty SCI centers.

Improving access to primary care for persons with SCI involves acknowledging and addressing a variety of barriers: physical accessibility, policy and procedural accessibility, communication, knowledge, and attitudes and bias. These barriers can negatively affect care and may manifest differently in each clinic. First and foremost, providers should conduct an assessment of their own clinics and treatment areas to identify existing barriers in order to develop a plan to ameliorate them based on the following recommendations.

Free and searchable SCI educational resources and guidelines for primary care health care can aid in addressing the current SCI knowledge and expertise gaps. PCPs should be aware that the SCI population requires specialized care with particular attention to common secondary conditions such as autonomic dysreflexia, bladder/bowel issues, skin breakdown, respiratory complications, spasticity, and pain.

The design and layouts of medical offices should provide unimpeded access pathways by avoiding steps, steep slopes, deep pile carpets, and polished surfaces.¹²  This includes removing barriers to patient areas to allow patients the space to turn around in a wheelchair.¹²  Additionally, clinics should adopt best practice standards for medical diagnostic equipment such as treatment tables, examination equipment, examination chairs, weight scales, mammography equipment, and other imaging equipment.¹² 

During an initial visit, all patients should be encouraged to list their accommodation needs. This will inform staff and guide them in implementing an appropriate on-site care plan.¹²  Accommodations should be revisited prior to or at the beginning of a patient’s next visit and should be updated as needed.

Providers should utilize person-first language and be mindful of how the medical model of disability impacts their perception of people with SCI. PCPs should engage in self-reflection to examine their biases and attitudes toward patients with disabilities and other intersecting identities. Providers should look to improve their cultural competency in the context of disability by expanding their knowledge of human rights issues and the history of disability advocacy. The references at the end of this article are a great initial reading list.

Finally, addressing these barriers requires providers to act as advocates on behalf of patients with SCI. Providers should endeavor to understand the issues and speak up in support of needed change and improvements. A provider’s voice carries great weight in clinics and the community and in creating health care policies.

Dr. Gold does research on issues related to pregnancy after SCI and consults with the patient’s physiatrist. She realizes that she should not make assumptions about the patient’s ability to be a mother with a disability, and she should not assume that the patient is a single mother. She laments that she never broached the topic of sexuality and realizes that she may have provided inadequate care. She decides to support her patient and supply her with valuable resources like the Disabled Parenting Project (https://disabledparenting.com). Dr. Gold begins to think about other issues associated with pregnancy, such as weight gain, and the patient’s needs for different durable medical equipment, extra assistance with her care, and mobility equipment. She also begins to consider the role she may play in that process. She realizes that she does not have a wheelchair scale in her clinic. She engages in problem solving and advocacy by trying to locate a wheelchair scale in another clinic that her patient may be able to use and trying to obtain one for her own clinic. Finally, she realizes that she should sit down with her patient rather than talking down to her.

All PCPs and providers have sworn to uphold the Hippocratic Oath, which involves embracing social justice for all patients. People with SCI rely on primary care as an entry point to the health care system and for longitudinal continuous care. Advocating for and embracing social justice requires effort in order to properly address all barriers preventing access to high-quality health care. Understanding these barriers and taking steps to address them will improve health care outcomes for people with SCI.

1. Improving access to primary care for persons with SCI involves working to reduce all barriers: physical accessibility, policy and procedural accessibility, communication, knowledge, and attitudes and bias.

2. Barriers may manifest differently in each clinic. Providers should conduct a self-assessment of barriers in their own clinics, and receive input from people with SCI, to develop a plan to ameliorate them.

3. Communicate with person-first language.

4. Examine your attitudes and biases about people with disabilities.

The authors report no conflicts of interest.