By Abayomi Ogunsanya
In August this year, amid the uncertainties and tremendous global discomfort caused by the Covid-19 pandemic, Nigeria received encouraging news when the country was declared free of the wild polio virus, joining a league of countries in which the virus had been eradicated and, by this declaration, inching Africa towards a total freedom from the disease. It was a triumph for Nigeria and a personal victory for me as a polio survivor.
In commemoration of this year’s International Day of Persons with Disabilities, I deem it appropriate to reflect on this important victory and to offer a few personal account of my experience living with polio-inflicted disability and the challenges faced by polio and other survivors of sundry disabling illnesses.
Caused by polio enterovirus type 1, 2 or 3, polio is mainly a disease of children and young adults. It is a virus of high infectivity whose main route of infection is through the human gastrointestinal tract.
Infection is oral and the virus multiplies in the gut for three weeks, after which the person either recovers or becomes very ill. Infection rates are normally very high but the vast majority of patients show no symptoms or appear as though they have a flu-like illness. It was once a deeply feared disease in many parts of the world, and rightly so because it occurred in numerous epidemics.
It was one of the most rampant childhood illnesses when I was born in the 70s in northern part of Nigeria. Incidence of the disease had ravaged Europe and America in previous decades, until the inactivated polio vaccine (IPV) was developed by Jonas Salk in late 1955 and the oral polio vaccine (OPV) became available in 1962 following the work of Albert Sabin.
The widespread use of these vaccines led to the eradication of acute polio in the developed world and the disease had almost become a rarity in those countries by the time I was born.
Misdiagnosis of my illness
Like many parents at the time of my birth, my parents did not know that I had contracted the disease; their initial thought was that I had suffered one of those perennial childhood illnesses and that it would soon pass. But how mistaken they were!
By the time an accurate diagnoses was made after a series of tests and following a premature injection of unrelated vaccines, I had succumbed irreversibly to one of the most damaging effects of the disease: one of my limbs had effectively paralysed and muscles in the other had weakened considerably.
I was only sixteen months old and a toddler. Many years later, when I came into a wider knowledge of the disease, I found that I was one of numerous children who had been paralysed at the time I contracted it. Some of those infected were, rather fortunately, not paralysed. Many were partially paralysed and recovered, while others were paralysed partially or severely for life.
As I said above, the disease was endemic in the Northern region of Nigeria at the time I contracted it and for many years thereafter, it remained one of the most widespread childhood diseases in most parts of Nigeria.
In the intervening years between the time that I contracted the disease and when I began to be conscious of my disability, many efforts were made by my parents to have me rehabilitated. I grew up knowing only one form of mobility: crawling on all fours. But I was not aware of my disability until around the time I turned five years old when I realised that there were many things I could not do like my coevals, chief of which was that I could not walk like everyone else.
As part of many efforts to correct my disability, I was taken to the National Orthopaedic Hospital, Dala, Kano, where, after an initial assessment, a pair of calliper splints were recommended for me. Back home, I could not cope with the discomfort of using the calliper splints and could not endure the pains I experienced while practising to walk with the aid of a walking frame.
I could never manage to stand unassisted and the distress of having some metal support for my legs was so much that I cried unceasingly until everybody soon gave up on trying to help me get used to this early attempt at rehabilitation.
It was inevitable that I would return to crawling around on all fours. To make this form of mobility easier for me and because my trousers were always torn at the knees, my mother bought a pair of rubber casing for my knees and a pair of slippers for my hands.
This was how I was until sixteen years later when I benefited from a corrective surgery that allowed me to return to the use of calliper splints and a pair of elbow crutches. But the aftermath of polio does not end with corrective surgery or other forms of medical and psychosocial rehabilitation of victims. New symptoms would follow much later.
I did not know about this until after I had turned 40 years old and I began to experience the condition known as ‘The Late Effects of Polio’ or ‘Post-Polio Syndrome.’
The symptoms of this condition include:
*Pain in muscles and joints
*Lack of strength and endurance, with increased muscle weakness and fatigue
*Respiratory and swallowing difficulties, often with problems relating to sleep
*Severe intolerance of cold
*Decline in ability to carry out customary daily activities such as walking.
These symptoms are not age-related and some survivors, like me, may not experience all of these symptoms at once or there maybe delay in when they begin to set in. I first became aware of this condition in 2018 when I moved to Ireland and I signed up to become a member of Polio Survivors Ireland, a charity that is committed to creating awareness and providing ‘information regarding the late effects of polio among polio survivors, statutory agencies and the wider medical profession,’ and to ensuring ‘that the needs of polio survivors relating to their condition are met to enable them to live with dignity.’
Since joining the organisation, I have received a great deal of support which makes living with these symptoms a lot more bearable. Post-Polio syndrome is internationally recognised and research is ongoing but awareness about it is still very limited, especially in developing countries. While there is no known cure, organisations like Post-Polio Ireland advocate a need to do more to alleviate the symptoms and enable the retention of an independent life, which may often require some modification of lifestyle.
Paralysis (whether caused by polio or something else)—all disability—affects a person in many ways, including, as the eminent anthropologist Robert Murphy shows in ‘The Body Silent’, a person’s identity and his or her ties with others.
Polio could leave one’s body—or parts thereof—permanently altered, and if this happened when one was a child, working oneself through the labyrinth of dominant norms of daily life is a permanent lesson in negotiation with the physical environment as well as the human community to which one belongs.
Life with disability
In my experience as a polio survivor and a person with physical disability, I have had to combat sundry challenges, some in the form of finding my way around the physical environment and others in the shape of confronting social norms that frame disability as a negative social condition.
All of these experiences have contributed to shaping my understanding of how the world of people with disabilities, in relation to its alterity—the world of the able— functions. For many disabled persons, perhaps more pernicious than the difficulties of dealing with many inhospitable aspects of the built environment—such as lack of access for wheelchair users etc — is the challenges posed by the social construction of one’s disability and how this affects one’s relationship with others.
I became conscious of being different, of how my disability affects my ties with others, much later in life, especially after the use of mobility aids had become a permanent fixture of my everyday existence.
From struggling to access formal education to facing discrimination in employment and in other formal sectors, I have had to claw my way up from a position of great social disadvantage, in a milieu in which disability is viewed as a sign and a measure of one’s ability and in which there is very little support for the disabled, to a place where my modest achievements in life have become something of encouragement for me to aspire for more.
Not many persons with disabilities in Nigeria, and elsewhere, have been lucky in their quest to live independently or in their effort to prove that they are not incapable of amounting to something. Robert Murphy, who himself had to struggle for autonomy following his disability in the prime of his career as an anthropologist, puts the matter rather succinctly: ‘People with disabilities have a great deal in common, but what they share most is an inimical environment—human and physical barriers so great as to drive many into isolation.
Those who fight back, who assert themselves, who transcend those hurdles, do so out of folly or courage—which are in fact the same thing.’ Many persons with disabilities fit the latter category—those fighting back, confronting the everyday problems of accessible housing, employment and transportation with great courage.
Yet, what people with disabilities want, what many like myself are asking for, is a change in attitude towards disability—a change that requires considerable cultural and policy re-imagining of disability as a social condition, a condition that is part of that great variety that is our shared humanity. It is about a quest for inclusion in society and away from paternalistic gestures that reduce the disabled social subject to a helpless human burden that is incapable of contributing to the advancement of humanity.
It is not simply about taking care of people with disabilities as part of the vulnerable members of the human society; it is also about recognising their agency and their subjectivities, and how these might be factored into a productive social engineering that aggregates all abilities and potentialities into a meaningful whole for the advancement of society.
Although the theme for 2020 International Day of People with Disabilities is focused ‘on spreading awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders, learning differences and cognitive dysfunctions, among others’, the experiences and circumstances of most, if not all, people with disabilities are circumscribed by the social and cultural contexts that I have tried to describe in this reflection.
It is important, therefore, that society pays careful attention to these circumstances and experiences, and for Nigeria, it is not time yet to bask in the victory of living in a post-polio society.
There is yet a lot that should be done to alleviate the sufferings of all people with disabilities. Post-polio syndrome, for example, is little known in Nigeria, and there is not a single support for sufferers. How about reflecting on that as we celebrate this year’s International Day of People with Disabilities?
Dr Ogunsanya, an anthropologist and a public affairs commentator, writes from Dublin, Ireland.
