"A central diagnosis of the root causes of exclusion of PWDs is thus in our socio-institutional system."
A person with visual impairment residing in Dire Dawa - Ethiopia's second largest city in the Eastern part of the country - was recently reported to have set himself on fire in a broad daylight and in public, apparently attempting to commit suicide. His reason, as later affirmed by his neighborhood and acquaintances, was that he was entirely isolated, deserted by society, including friends who, pre-COVID19, would assist him as his guides, give him a hand to run errands and go out-and-about his daily routines. Now, owing to the post-COVID era mantra 'social distancing', no one would approach the blind man altogether, hence instilling in him a feeling of despair, abandonment, isolation, lack of self-worth, so much so that he no longer saw the need to continue living and thus decided to set himself alight right on the streets of Dire Dawa. He was rushed to the hospital afterwards, but in vain. The man died a few days later while receiving treatment.
The foregoing anecdote is not something of an isolated incident or some narrative of pity. Citizens with disabilities in Ethiopia - the large majority of whom are among the 'poorest of the poor' according to various studies, - are now also among the most severely impacted by the COVID-19 pandemic.
This status quo, albeit no concrete data or even a simple pilot survey has been made available hitherto by both state and non-state actors on the subject, can be presumed to have precipitated from either a disproportionate exposure of persons with disabilities (PWDs) to the virus due to their living conditions and disabilities and/or because of the infinitesimal attention given to the matter in institutionalized responses to the pandemic, especially by the principal duty-bearer in this respect - the Government of Ethiopia.
Adding insult to injury, the mainstream media are not only oblivious to reporting alarming individual stories such as the one shared above which occurred in Dire Dawa, Ethiopian health-sector authorities conveying daily briefings on the status of the pandemic appear to have forgotten their duty to make these updates accessible for all without distinction, PWDs included.
When the first case of COVID-19 was reported in a live broadcast by the Minister of Health on Friday, March 13th, for example, there was neither a simultaneous sign-language interpretation nor even a mere captioning of the briefing as if this is not an issue of life-and-death to PWDs too, as every other 'non-disabled' citizenry. Then came the anticipated Declaration of State of Emergency by the Ethiopian Prime Minister on 8 April 2020 in relation to the pandemic wherein the PM called on the populace to, inter alia, "reach out to one another, the poor and needy". An explicit word or two about PWDs in the PM's Decree would have been ideal, given the obvious heightened vulnerability of constituencies like PWDs.
Put otherwise, the state was, to say the least, indifferent to its solemn obligation under the United Nations Convention on the Rights of Persons with Disabilities (CRPD)- a treaty Ethiopia is a state party to since June 2010 - in which ensuring the right to life, non-discrimination in any shape or form, accessibility to information and health facilities, full and effective inclusion of PWDs are among the core, binding principles (see, e.g. CRPD Articles 3(b)(c) & (f), Articles 5, 9, 10, 11 & 25).
Note that in February 2020, Ethiopia ratified the Marrakesh Treaty as well - another binding instrument obliging States Parties to make published works accessible to the Blind, Visually Impaired or Otherwise Print Disabled (abbreviated as 'VIP's). It was several days after an outcry from the country's disability fraternity that the government finally got to hear the clarion call of its duties to make COVID-19 related communication disability-friendly. And yet, a lot still remains uncommunicated to PWDs, but at least prime-time news broadcasts have now begun providing sign-language translations.
Now, that is just about information - the tip of the iceberg. Apropos the extent to which COVID-19 tests and treatment are reaching PWDs, the direct impact of lockdown and quarantines on the disabled, availability and accessibility of personal protective equipment (PPEs), among others, the gloomy saga stays untold.
A fews days ago, I took a peek at the Federal Ministry of Health (MoH) website out of curiosity, as a layperson to the health sector, to simply check the doctor-to-patient, hospital-to-population ratio figures in Ethiopia. Of course I knew, 'ab initio' (as we say in my field - law), that my findings from MOH's data would not make me shout hallelujah. The Ministry indicates that a country of 110+ million people has 156 hospitals all in all; hospital-to-population ratio is 1:586,740; physician-to-population ratio is 1:20,970, with a total of 4197 physicians nationwide.
The Ministry says, its pillar principles in working on health service coverage and utilization in Ethiopia are availability, accessibility, equity, efficiency and quality. That sounds pretty good, albeit no doubt that these precepts have been everything but applicable to PWDs in the Ministry's response to COVID-19 thus far. It is perhaps wise to inject inclusion too as one of those underlying principles - a verbal commitment could be a good start. Ditto for the MoH's public health wing, the Ethiopian Public Health Institute (EPHI) - an Agency charged with the mammoth task of coordinating national responses to the novel coronavirus.
Be that as it may though, the exact nuts and bolts of how Ethiopia's fragile health system failed or, who knows, embraced its citizens with disabilities remains to be unpacked, hopefully soon, by a solid research of a concerned local civil society organization. Oh, and by the way, neither of the websites of MOH and EPHI are disability-friendly too - something easily resolvable by engaging a few of the NGOs in the country working on disability.
This is not to mean that it's all doom and gloom. Needless to say, resource constraints in Ethiopia, as in most nations of Sub-Saharan Africa, is no news and is a prevalent nationwide denominator across numerous sectors. That is understood. Likewise, we have seen some bits-and-pieces of noble disability-inclusive endeavors during this pandemic. The Mayor of Addis Abeba, for instance, was recently televised paying a courtesy visit to the Federation of National Associations of PWDs (FENAPD) - an umbrella parastatal of disability associations.
Benevolent handouts of PPEs, foodstuff and basic hygiene materials to PWDs and their organizations are observed here and there. The crux of the matter, nonetheless, is not ingrained in those handouts but in a systemic change. The crux is embedded in a century's old naïveté of our entire system undermining disability as a micro-concern, an object of charity and pity. Not more, not less.
However, that's a false narrative. Any reasonable person would know that disability is there to stay in society indefinitely. No one can claim a lifetime immunity from disability as it, at any point in one's trajectory, can be anybody's own experience, not least when age catches up someday! Disability is an inherent identity, a norm - in and of its own accord - as established in contemporary international human rights laws, including the newly adopted African Disability Rights Protocol (ADP).
A central diagnosis of the root causes of exclusion of PWDs is thus in our socio-institutional system. And the solution? It's right there in the diagnosis itself - it's called systemic inclusion, the gist of which is gradual dismantling of a mindset of Ableism, i.e., universal discrimination favoring a certain group of human beings over another. In the words of Talila A. Lewis - a renowned disability rights attorney, 'Ableism' is defined as follows:
A system that places value on people's bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, colonialism and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person's appearance and/or their ability to satisfactorily produce, excel and "behave." You do not have to be disabled to experience ableism. (Emphasis mine).
On 4 November 2016, the Geneva-based monitoring organ of the international disability treaty, known as the CRPD Committee, published its Concluding Observations the Ethiopian Government's Report of implementation of the Convention. One of the very first pieces of advice forwarded by the Committee to Ethiopia was this:
"The Committee is further concerned that persons with disabilities and their representative organizations are not systematically consulted in the development of all policies and laws, training and awareness-raising across all sectors... " (para. 7). Emphasis mine.
"The Committee [therefore] recommends that the State party [that is Ethiopia] ensure systematic and meaningful consultation with organizations of persons with disabilities in the development of all policies and laws, training and awareness-raising across all sectors, including in the implementation of the National Action Plan for Persons with Disabilities 2012-2021, and that the State party ensure the independence of association of persons with disabilities and their representative organizations." (para. 8) Emphasis mine.
The almost unanimous opinion of local leaders in the Ethiopian disability sector during this pandemic is that they are noticeably unrepresented in the multiple structures put together by the government to respond to the pandemic. Provision of alms, haphazard distribution of wheelchairs and assistive devises or PPEs, celebrity-apprentice style televising of a couple of so-called 'disability advocates' every so often are all fine.
These publicities are however mere hypes in a large majority of instances. They barely scratch the surface of an exacerbating marginalization of 15-18% percent of Ethiopia's population - persons with disabilities. That percentage is an estimate of the World Report on Disability, it may well have exponentially increased already if cogent disability census was carried out in the country.
Systemic/structural inclusion is not quantum physics, doesn't call for any sophisticated wit to comprehend. It just means, engage the grassroots stakeholders themselves genuinely and directly when you contemplate, plan, budget for and implement whatever it is that you do as a government. It means hearing it from the horse's mouth itself, as opposed to the futile "we know what's best for you" sort of top-down approach. The illustrious global dictum of disability rights movements "Nothing About Us Without Us" came about for a reason after decades of relentless struggle by bona fide veterans of the disability fraternity worldwide.
Indeed, the duty to protect PWDs is not and cannot be the government's alone. Disoriented, short-sighted, capacity-constrained leadership of disability associations in Ethiopia is an Achilles' heel that we, persons with disabilities ourselves, must put in order so as to get efforts of State and non-state actors inclusive as well as synchronized. We must have the audacity to clean up our homes first, because fundamental change is that which begins from within.
It is obvious to an insider in the country's disability movement that among the few major, well-meaning NGOs claiming to be advocates for the rights of PWDs in Ethiopia, a few giant ones are in fact doing the exact contrary to what they preach - disempowering PWDs by misappropriation and squandering of the already meager resources meant for supporting the disabled.
At times, doing so by creating a rather clandestine chain of mafia-like inner circles led by Ethiopia-based expats who, to the onlooker, appear the Good Samaritans tirelessly mobilizing funds from the rest of the world to Ethiopians with disabilities, when as a matter of truth, they are everything but Good Samaritans. The day will come when such latent shenanigans get uncovered and irreversibly dealt with, backed by genuine friends of the disabled and the Government itself.
Meanwhile though, let's leave it at underscoring that COVID-19 is about every citizen, not some. My wellbeing is practically yours, and vice versa. In the world of coronavirus, we can solely survive and thrive together. Each soul excluded, left behind by society will drag an entire nation backwards, at last dearly costing us all. That is what the celebrated African wisdom 'Ubuntu' tells as: We are, because I am. I am, because we are. AS
Editor's Note: Dagnachew Wakene is a Doctoral candidate at Institute of International and Comparative Law in Africa (ICLA), Faculty of Law, University of Pretoria. He is also the Regional Director, Africa Disability Alliance (ADA). He can be reached at: firstname.lastname@example.org