JILLIAN MANN

Dear Erin Stampp,

My brother, Hank, has faced a lifetime’s worth of scrutiny and maltreatment. Hank was diagnosed with Cerebral Palsy at the age of two years old. He is wheelchair bound with spastic quadriplegia. But more importantly, he is a Marvel-loving, Beatles fanatic with a contagious smile in his second year of law school. Yet, his intelligence is often unrecognized, dismissed, or underestimated solely based on his appearance. For instance, when Hank goes to the doctor, most physicians often approach my parents or his caregiver when asking questions regarding his health because they assume Hank is not cognitively proficient at speaking on his own behalf. Ignorance within doctors in explaining to patients with disabilities their health is common and results from a widespread, deep-rooted knowledge gap that most physicians lack. Listening to personal anecdotes from my brother illuminates areas of weakness within the US and other countries alike in providing quality care to patients with disabilities. This letter strives to contextualize, observe, and advocate for change to reconcile and remove these stereotypes which preserve inequalities within healthcare for disabled people.

As of 2020, 61 million adults in the United States live with a disability (CDC, 2020). The upward support for the disability rights movement along with increased disability discrimination legislation, including The Rehabilitation Act and The Americans with Disabilities Act, have been instrumental in breaking down barriers for the inclusion of disabilities throughout everyday life. There remain, however, persistent societal injustices that result in glaring impediments to healthcare for the disabled. Communication barriers, attitudinal blockades, and limitations to care provision are three main areas that I want to discuss with you in highlighting the current state of disability awareness within the medical community.

Disability awareness is lacking for most physicians and other health professionals alike. 82.4% of doctors believe a person’s quality of life is lower when disabled (Lezzoni, 2021). This negative attitude towards disabilities manifests from the lack of education or disability awareness during healthcare training. As a result, only 40.7% of physicians feel confident in their ability to provide adequate quality of care to those with disabilities, just 56.5% of doctors admit to welcoming disabled people into their practice, and frighteningly 18.1% believe the healthcare system is meeting the needs of the disabled (Lezzoni, 2021). 

Moreover, accessibility to healthcare practices also persists as a significant obstacle to equitable healthcare to the disabled. To illustrate, 95% of blind individuals are rarely given health advice in an attainable format (Shakespeare, 2009). Additionally, one in four people who are deaf have missed a medical appointment because the information was not presented in a coherent fashion (Shakespeare, 2009). Overall, it is quite evident that general healthcare for the disabled is currently a very low priority. We need transparency that unveils these blatant inconsistencies in healthcare treatment of the disabled before we reconcile these disparities.

Contextualization of this topic is key in revealing how this issue is far broader and more anthropological than it may appear. Two models encompass the manifestation of disability: the medical model and the social model (Calloway, 2021). The medical model characterizes disability based on individual deficits or other health complications. In other words, it focuses on what is ‘wrong’ with an individual while striving to ‘fix’ their physical impairments. The social model, on the other hand, categorizes disability as an environmental phenomenon (Calloway, 2021). It correctly illuminates how disability is not only influenced by individual differences, but also by larger societal problems that are present today. Multiple environmental factors exacerbate the perception of disabilities. Dismissing individuals to the ‘medical model’ while ignoring structural issues can further perpetuate inequality in health care (Shakespeare, 2009). Thus, it is imperative for doctors and other health professionals alike who treat disabled patients to be aware of these stigmatized views that are widespread throughout society in order to correctly evaluate the cause, consequence, and treatment of their health condition (Shakespeare, 2009).

There are three main issues that contribute to disabled people receiving inadequate healthcare. One: doctors have not yet developed proper training in effectively communicating to patients with intellectual or physical disabilities. Moreover, healthcare providers often lack the clinical experience in working with disabled patients and tend to discount or overlook their voice (Tuffrey-Wijne, 2009). Physicians mostly rely on the information of caregivers, without attempting to communicate with the patients themselves (Tuffrey-Wijne, 2009). This poor exchange of communication between doctors and their patients with disabilities fosters little opportunity for these patients to express their viewpoints, challenges, and desires (Shakespeare, 2009).

One patient with mild learning disabilities recalls:

 “They (the physicians) talked to me, but they were using language that I didn’t understand, and I was saying, “‘can you say it in an easier way’”, but I don’t think they really understood how I was feeling. I was crying, I was feeling really down and depressed. I didn’t have a clue what was going on and I was very, very scared” (Tuffrey-Wijne, 2009).

Two: attitudinal barriers stemming from physicians and society as a whole impede disabled patients from receiving satisfactory healthcare. Globally, there remains a profound stigma targeting the disabled. As sociologist Goffman put it, individuals who are in any way atypical from the norm acquire an “attribute that is deeply discrediting…a failing, a shortcoming, a handicap” (Leavitt, 1992). These negative attitudes can directly govern the ambivalent feelings of healthcare workers in the medical field. For instance, most healthcare workers constitute having a disability as a deficit, disadvantage, or lack (Calloway, 2021). Anthropologist James Staples expanded on this concept and described how the doctors he observed made correlations between fecklessness and their patients’ impairments, attributing their disability to “poor dietary choices; bad habits such as smoking, extramarital sex and alcohol consumption; marriage to close relatives; and poor personal care” (Staples, 2021). Any deviation from the concrete ‘perfect body image’ established within society is deemed pathological, influencing the treatment of disabled patients in healthcare. To combat this, it is essential to demonstrate solidarity for those suffering from the deep-rooted historical stigmas and its enervating societal reception. 

Three: poor care provision and deficient support for patient’s needs. Physicians primarily place responsibility on caregivers to implement, communicate, and facilitate healthcare to their patients. The carers, however, feel they lack the necessary skills, expertise, and confidence to offer the same standard care a doctor would be expected to give (Tuffrey-Wijne, 2009). The lack of provision of care is also evident by the fact that individuals with disabilities are largely unable to access sexual health information (McCabe, 2013). Physicians assume that people with disabilities are not sexually active, and in turn exclude them from health information or screening that non-disabled people receive as a matter of routine (Shakespeare, 2009). This manifests decreased sexual knowledge and sexual self-esteem, magnifying increased risk of sexual abuse (McCabe, 2013).

We cannot let this apathy towards the wellbeing of disabled individuals continue for any longer within the medical environment. So why has it been allowed to persist? 

Shockingly, disability training is rarely provided in the school system: only one in five medical schools currently address disability in their curriculum (Rogers, 2015). Even further, courses medicalize disability which fail to encompass the ‘social model’ I discussed earlier. This teaches medical students that disability is nothing but an individual health problem, outlining the medical causes to personal deficits rather than understanding its association within society. This lack of agency in teaching disability care is not enough to educate new generations about the underlying injustices directed towards those living with intellectual or physical impairments. It fails to teach a holistic perspective of health.

As shown, the current medical school curriculum does not cut it. What the fight for disability awareness needs is an urgent devotion to combating these social inadequacies. This fight requires three things. First, a change in the narrative of the experience of disabilities. The negative attitude towards one’s experience with disabilities needs to be eliminated, and by doing this society can start viewing disabled individuals as equal to the non-disabled rather than as deficient.

Second, physicians need to better partner with their patients and carers to effectively communicate their healthcare. Healthcare professionals must learn how to properly connect with their patients directly at an early stage to effectively carry out their physical and emotional support (Tuffrey-Wijne, 2009). 

Third, the expansion of disability awareness within the current school system is imperative for accepting people with disabilities. It is the key solution to this change. Medical schools can enhance communication patterns between future physicians and people with disabilities by implementing various interventions. For instance, medical students can begin visiting the homes of patients with disabilities (Shakespeare, 2009). This can foster open conversations in a more personal setting, illuminating the subjective aspects of living with a disability. Such integrative programs will allow improved communication, increasing the appreciation for the capabilities that disabled people have. Additionally, another factor that can exponentially improve the knowledge of disability care stems from opening admissions and qualifications to medical school programs for people with disabilities. The most dramatic learning can arise from a peer rather than a patient. Learning from a student who has a disability can challenge the attitudinal barriers directly, facilitate communication, and teach others the correct care that disabled people need (Shakespeare, 2009).

We must stand metaphorically at the precipice of change in healthcare for disabled individuals in a society that calls out inequities and forms social oppression. 

My brother, Hank, may have stated it best when he said, “If you see what I see, then there is NO CP (Cerebral Palsy).”

Sincerely,

Jillian Mann

Bibliography

1. Tuffrey-Wijne, I. (2009). ‘People with Learning Disabilities Who Have Cancer: An Ethnographic Study,’ British Journal of General Practice, 59(564), pp.503–509. Doi: 10.3399/bjgp09x453413. 
   
   
2. Shakespeare, T. (2009). ‘Disability and the Training of Health Professionals,’ The Lancet, 374(9704), pp. 1815–1816. Doi: 10.1016/s0140-6736(09)62050-x.

3. McCabe, J. (2013). ‘Nursing, Sexual Health and Youth with Disabilities: A Critical Ethnography’, Journal of Advanced Nursing, 70(1), pp. 77–86. Doi:  10.1111/jan.12167. 

4. Calloway, K. (2021). ‘Acute care nurses’ attitudes toward nursing students with disabilities: a focused ethnography’, Nurse Education in Practice, 51, p. 102960. Doi:1016/j.nepr.2020.102960. 

5. Leavitt, R. (1992). Disability and Rehabilitation in Rural Jamaica: An Ethnographic Study. University of Texas: Fairleigh Dickinson University Press.

6. Staples, J. (2012). ‘Culture and Carelessness: Constituting Disability in South India’, Medical Anthropology Quarterly, 26(4), pp. 557–574. Doi:  10.1111/maq.12007. 

7. Centers for Disease Control and Prevention (2020). ‘Disability Impacts All of Us Infographic.’ Available at:https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html#:~:text=61%20million%20adults%20in%20the,Graphic%20of%20the%20United%20States (Accessed: 5 May 2022).

8. Lezzoni, L. (2021). ‘Physicians’ Perceptions of People with Disability and Their Health Care’, Health Affairs (Project Hope), 20(2), pp.297-306. Doi: 10.1377/hlthaff.2020.01452.

9. Rogers, J. (2015). ‘A Community-Centered Disability Curriculum for Medical Students’, Minnesota Medicine, 98(4), pp.33-35. Doi: https://www.ncbi.nlm.nih.gov/pubmed/26065204.