My name is Esther Akua Gyamfi, and I am a person with a disability and the first international and comparative disability law and policy lawyer in Ghana. 1 In this reflective essay, I draw on my lived experiences at the overlap of Indigeneity and disability. Scholarship in disability studies and Indigenous studies have drawn my attention to "big picture" concepts of kinship and care, identity, and the power of education. I hope to ground and complicate these frameworks by showing how they have played out in the worlds that I inhabit.
Indigeneity, kinship, disability, and care
The Komfo Anokye Teaching Hospital, Kumasi in the Ashanti Region of Ghana welcomed me into a warm world in the early part of the 1970s. My parents were Akans from Ashanti, one of the approximately 100 linguistic and ethnic groups in Ghana. 2 At the time of my birth, my father was a schoolmaster at Prempeh College in Kumasi (the capital city of the Ashanti region) and my mother was a housewife.
Birth holds traditional significance to both paternal and maternal in-laws irrespective of the tribal beliefs. In Ashanti, a birth is an opportunity for fathers to honor the elderly in their families by naming their children after them. I was named after my paternal grandmother and my father favorably called me "awuraba," meaning "lady." The family on both sides adored me as a baby: they had wanted a little girl, and I also was considered healthy and beautiful, with a name that connected me to a treasured elder. As I view it, the affection showered on me reflected the Ashanti as well as Ghanaian belief in the inherent right to life, which includes all the other contingent fundamental human rights.
My actual inherent right to existence came into question after I became disabled. At the age of two, I was given a trial polio vaccine. Soon after, I began experiencing a high temperature with an overwhelming weakness and was taken to a private hospital. As my paralysis increased, the hospital had me transferred to Komfo Anokye Teaching Hospital, the regional hospital where I had been born. Soon after, staff informed my mother that I would never walk again, that I would be a burden on her for the rest of my life. After learning that my mother was married and would likely have other children, they suggested that they could perform a "mercy killing" on me as a means to support her and her remaining and future family. My mother declined, choosing to care for me as a loving expression of Indigenous kinship. Extended kinship played an important role in this fraught time too. My father's mother advised him to support my mother wholeheartedly. My paternal grandmother, like others in her Indigenous community, strongly believed that I would definitely die and that I had been sent from the ancestors to test my family's morality. She instructed my father to do his best so that when I returned to the ancestral world after my mission, I would give good commendations about him to the ancestors. To my paternal grandmother, a bad commendation from me would make the ancestors drown him in poverty as retribution for violating expected practices. My father heeded his mother's advice and supported my mother. However, my parents' different interpretations of familial obligations collided when my father decided to get a casket ready for my anticipated, impending burial.
My mother took me home after the hospital discharged me and she became my primary caregiver. It was intense for both of us: my limbs were practically disjointed; my neck wouldn't hold my head to my body; I couldn't sit independently; and my legs were like ropes. Stigmatized views of disability compounded our isolation. Even family members who sympathized with my mother declined to offer care and support that typically (and substantively) has sustained kin across generations. Many relatives and neighbors kept their distance. For some in my community, the presence of my disability sparked even more harmful responses. Seeing the daily toil my mother had to go through with me, my father's sister at one point recommended "a traditional healer who could do something about my situation." My mother didn't accept the advice or similar counseling that other relatives pressed on her. If she had, I wouldn't be alive today.
Education, access, kinship, and disability
My parents greatly value education so it was unsurprising that I was enrolled in a day care centre at age 16 months. After I became disabled, however, immediate and anticipated paths to schooling changed. Both local Indigenous views of disability and institutional ableist practices underscored the belief that I had little right to exist, let alone pursue an education and a sustainable future.
When I reached the age of six (the typical age for elementary education) none of the local schools would accept me. Disability was their justification. The most predominant of their excuses that has stayed in my memory was that, "it was not healthy for a child with disability to study in the same school with other children without disability." So my mother expanded her care-work for me, advocating for my education. Within a period of two years, she gained my admission to eleven different primary schools in Kumasi. But she and I were unable to dismantle teachers' pervasive negative attitude towards disability. Young female teachers in particular didn't want to have anything to do with me; they believed that they might give birth to children like me if they were overexposed to my presence.
Ultimately, my mother decided to homeschool me. She got the syllabus from the District Education Service and bought the required books. In time, extended kinship support, along with private school options, created more opportunities for my education. While my new teachers had less engagement with me, and most of the children kept their distance, an older first cousin joined my school out of her affection for me. This cousin assisted and sometimes carried me to my classroom and helped me with personal care and feeding during break time.
As this cousin and many scholars understand, disability is relational. My cousin suffered a great deal on account of her devotion to assist me both in school and at home. In school, the teachers treated her with contempt, sometimes physically beating her mercilessly in full violation of school rules. Her commitment to my care impacted her own education in other ways: she often was late to her own classes both in the morning and after break times in the afternoons. The latter part of primary education was difficult for both of us as one teacher advised my cousin to stop assisting me or more punishment would follow. My cousin invoked kinship obligations, insisting on the importance of caring for and supporting me. I remember she insisted that we were sisters. Despite this, the teacher continued to treat her with contempt. The beatings continued as well. The situation became so unbearable that my cousin almost dropped out of school. At one point she left for a whole term. The harm of anti-disability attitudes and practices tore our family ties. When she resumed school, she did not want to have anything to do with me.
In the mid-1990s, I matriculated at the University of Science and Technology in Kumasi. As with many disabled people attempting to attend university in Ghana at the time, I faced barriers at the individual and institutional levels. In my hall of residence, students expressed disdain at my arrival. I remember them saying that they "didn't want a disabled person in the hall of residence." The Hall master at the Republic Hall of Residence shared their hostile view of disability, adding that he was devastated that, "such a cripple was attached to the Republic Hall." Disability accommodations, like an accessible room, were criticized by mates at the hall of residence as "preferential treatment." I was asked to leave the hall of residence. I refused. As retribution, some of the hallmates removed my wooden ramps and handrails, intentionally undermining my access and agency.
In order to block me from hiring people for the publishing startup business I created during college, others claimed that it was taboo in my Ashanti community to work for persons with disabilities. The injustices I experienced personally drew my attention to the law and disability rights. I realized that the local Indigenous perception of disability that relegated persons with disabilities to the background were replicated in the exclusion of persons with disabilities from the Ghanaian legal framework more broadly. However, in 2006 advocacy for the passage of Ghana's Persons with Disability Act (Act 715) and the adoption of the UN Convention on the Rights of Persons with Disabilities gave me a glimpse of "a light at the end of the tunnel." I committed to attending law school and to pursuing a career in disability advocacy. 3
In studying law, I understood that all human beings are equal and that disability is part of human diversity. Knowledge in international and comparative disability law and policy alongside lived experiences as an Indigenous Akan woman with a disability has given me leverage to influence legislation, policies, and programs for the inclusion of people with disabilities. Legal advocacy work has propelled me into diverse public spaces, including giving lectures and presentations on local and internal organizational platforms, informally and formally teaching others about disability and literature, and publishing editorials as well as disability studies research. Becoming an international and comparative disability law and policy lawyer has defied the prejudice that worked against me as an Indigenous Akan woman with a disability.
Across my life, Indigeneity and kinship—especially Akan family connections and a child's close bond with their mother—has served as a vital resource. At the same time, common Akan beliefs about disability set me apart from others, worked against me, hindering my smooth enjoyment of a quality education, and sometimes directly threatening my existence. These cultural beliefs also impacted my family members and influenced our relations with one another. My lived experiences continue to teach me that complex identities, including Indigeneity and disability, are dynamic, varied, and strongly shaped by context and relations.
Current research suggest that I remain the only one in my country.
Return to Text
Ghanaweb 'Ethnic Groups' <http://www.ghanaweb.com/GhanaHomePage/tribes/> accessed 4 January 2015.
Return to Text
Attending the Ghana School of Law at Makola in late 2009, I continued to face architectural and attitudinal barriers. In response to the inaccessible lecture rooms and environment, I constructed ramps to enable me to walk around. During the two years' professional program, I paid three men to carry me in a chair to upstairs lecture rooms.
Return to Text