PGY-3, Physical Medicine and Rehabilitation
St. Marc, Haiti
Comprehensive Rehabilitation Program - Zanmi Lasante/Partners In Health
As my month in Haiti is now nearly complete, I am compelled to write about my perspective of disability as a component of global health equity. Although this concept has previously been outlined and discussed within the global discourse of health as a human right, it deserves further emphasis given that disability, unlike many aspects of chronic or infectious disease, is often overlooked within health and health care-related advocacy efforts.
I will start with the basic facts. It is estimated via the World Health Survey of 2002-2004 that approximately 15%-20% of the global population are individuals with a disability. This figure includes those with “significant difficulty with functioning in everyday life,” and can include those with traditionally defined disability such as amputation, stroke, spinal cord injury, brain injury, etc., however also include those with disability related to chronic disease or mental illness. The prevalence of disability also increases acutely at times of natural disaster or domestic and international conflict. It is commonly accepted that individuals with disabilities remain one of our most vulnerable populations globally. As often stated in disability and
international development initiatives, “disability is both a cause and consequence of poverty.” 1
If I hadn’t already believed this to be true, my time in Haiti certainly offered unequivocal confirmation of this theme. As initially described in Entry #2, our Rehabilitation Team continued to engage in home visits in keeping with the ZL/PIH “accompagnateur” model. With this, patients work closely with a local community health worker to create sustainable, culturally-appropriate system of medical and psychosocial support. Our Team visited patients of various backgrounds and complex needs, to include amputees (both traumatic and vascular), those who had experienced strokes, a gentleman with incomplete C2 spinal cord injury as the result of Potts, a man who had experienced tabes dorsalis as a component of tertiary syphilis, and several others. As expected, our patients had extensive rehabilitation needs such as impairments in mobility, range of motion, activities of daily living, cognition, and poorly-controlled pain. Even more striking, however, was the invariable context of extreme economic insecurity in which they all lived. Subject to difficult circumstances simply due to disability, many were also abandoned by spouses and family as the result of physical and functional limitations. Parents with disabilities were often left to raise their children alone and without a reliable source of income. Likely due to stigma, almost none were able to hold employment or vocation, leading to even greater resource insecurity and reliance on extended family members or neighbors in the community. In addition to physical or cognitive disability, many also experienced poor health due to medical conditions such as poorly-controlled hypertension and diabetes. Most were at high risk for abuse and neglect.
international development initiatives, “disability is both a cause and consequence of poverty.” 1
If I hadn’t already believed this to be true, my time in Haiti certainly offered unequivocal confirmation of this theme. As initially described in Entry #2, our Rehabilitation Team continued to engage in home visits in keeping with the ZL/PIH “accompagnateur” model. With this, patients work closely with a local community health worker to create sustainable, culturally-appropriate system of medical and psychosocial support. Our Team visited patients of various backgrounds and complex needs, to include amputees (both traumatic and vascular), those who had experienced strokes, a gentleman with incomplete C2 spinal cord injury as the result of Potts, a man who had experienced tabes dorsalis as a component of tertiary syphilis, and several others. As expected, our patients had extensive rehabilitation needs such as impairments in mobility, range of motion, activities of daily living, cognition, and poorly-controlled pain. Even more striking, however, was the invariable context of extreme economic insecurity in which they all lived. Subject to difficult circumstances simply due to disability, many were also abandoned by spouses and family as the result of physical and functional limitations. Parents with disabilities were often left to raise their children alone and without a reliable source of income. Likely due to stigma, almost none were able to hold employment or vocation, leading to even greater resource insecurity and reliance on extended family members or neighbors in the community. In addition to physical or cognitive disability, many also experienced poor health due to medical conditions such as poorly-controlled hypertension and diabetes. Most were at high risk for abuse and neglect.
Given this context, it is our priority to promote psychosocial empowerment while also providing medical rehabilitative care. As a capstone of my experience and acting as an illustration of this, our team co-sponsored an event in Port au Prince focused on disability advocacy and inclusion. With this, we wished to create an environment of celebration through which people with disabilities came together to promote community. The event was titled “Respect Me,” and pocket cards as well as posters of this slogan were distributed both in English and Creole. The phrase “Respect Me” was then used as an acronym to emphasize the concepts of: respect for dignity, empowerment, support autonomy, participation, equality of opportunity, communication, tasks of daily living, mobility, and environmental accessibility. We were honored to have the presence of Gerard Oriol, the Haitian Secretary of State for the Inclusion of People with Disabilities. All in all, it was a tremendous success and a call to action for us all – physicians, advocates, leaders, followers, people with disabilities, and their colleagues/friends.
I continue to stand by the notion that an empowerment and self-respect are the cornerstone of promoting both health and health care for people with disabilities in Haiti. With this in mind, there is much more work to be done. That said, we can also enjoy and be proud of how far we have come. It is my hope that those who attended our event can carry the phrase of “Respect Me” in the front of their minds, and use it when societal barriers hold them back from achieving true health.
1 “Disability, Poverty and Development.” A thematic report from the UK Department for International Development (DFID). February 2000.
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