In the busy streets of Lilongwe where life epitomizes the rhythm of a capital city … Chikumbutso David and Patuma Amidu tell tales.
Each one of them echo struggles unique to his and her life respectively now magnified by the looming shadows of health crises like COVID-19, Cholera, and pink eye.
David, 49, and father of five, navigated the streets of Lilongwe for two decades, relying on his wheelchair for mobility. However, the past three years have been particularly harsh since the advent of COVID-19.
Confronting physical disability, he finds himself intertwined in the unforgiving grip of a world troubled with barriers not limited to inaccessible infrastructure, societal stigma and economic adversities now even scarier amid the turmoil of the crisis.
Equally; Amidu, a resident of Area 23 in the city faces her own challenges given her deaf status as she can’t hear nor speak … having to rely on sign language for communication and interaction.
Through her interpreter, she outlines the hurdles she encountered in accessing proper healthcare services at the peak of COVID-19 and Cholera outbreaks given the communication barriers between her-self and healthcare officials.
“It’s tough to explain to doctors how I’m feeling because I can’t speak, and they don’t always understand what I’m trying to say. That aside; we don’t have much privacy at the hospital because we rely on our family to translate for us and to also interpret to us what the medics are saying,” said Amidu.
And the larger picture is worse … for most persons with disabilities in Malawi can’t read or write as they aren’t often sent to school due to stigma and thus disadvantaging this society from accessing information about pandemics most of which comes in audio, video or text formats and hardly accessible to deaf or blind.
Same goes with Braille information which unfortunately isn’t commonly shared either.
Noah Simwaka, a visually impaired advocate for persons with disabilities at Karonga district council, sheds light on the systemic issue.’
He says access to tailor-made-information for this community remains a significant challenge during health emergencies.
“Authorities should also be mindful that persons with disabilities are Malawians too and thus the playground ought to be leveled in making information equally accessible to us too; it’s our right.
“We need trained sign language personnel in hospitals to make sure that people’s rights to health must not be compromised,” said Simwaka.
Health emergencies like COVID-19 worsen existing inequalities, particularly for persons with disabilities … from inaccessible healthcare facilities to limited access to information and support services, individuals with disabilities encounter numerous barriers that violate their rights to health, equality, and participations.
Lusekero Mhango, a human rights advocate for people with disabilities, highlights that difficulties in accessing good healthcare, the information gap and stigma are clear manifestations of serious human rights violations.
Mhango says the lack of accessible formats, such as Braille or sign language interpretation, violates their right to access information on an equal basis with others.
“It’s a violation of the rights of persons with disabilities because; as enshrined in the constitution, persons with disabilities are to access any information as any other people … packed in a way that people can be able to understand and also access it.
“Instead we have a situation where we don’t have sign interpreters in hospitals and no Braille; this is a violation of rights,” said Mhango.
David and Amidu faced significant challenges rendering violation of their rights to accessing health care for these barriers to accessing proper healthcare.
Furthermore, social stigma, and economic adversities further marginalize them, preventing their full participation in society on an equal basis with others.
On 3rd December 2020, the United Nations Malawi issued a statement on the International Day of Persons with Disabilities, emphasizing the vital need for Malawi to enhance efforts towards the full and equal participation of persons with disabilities in all aspects of society and development.
Former UN Resident Coordinator for Malawi, Maria Jose Torres said “the COVID-19 pandemic has reminded us that protection, response, and recovery efforts cannot be effective unless everyone is equally valued and included.
Sadly, the voices and needs of persons with disabilities have been largely absent from the pandemic response, which reinforces already existing discrimination and inequalities,” she observed.
And the Sign Language Inclusive for Development emphasizes that individuals with hearing impairments are still being excluded from essential services like healthcare, education, and employment.
Isaac Msuku, Chairperson of the organization, notes through his sign language interpreter Adam Hassan, “Persons with hearing impairments face numerous challenges, particularly in communication. There exists a significant gap that hinders their access to vital resources.”
At the same time, George Chiusiwa Director General of Malawi Council for Disability Affairs, says it’s high time the country viewed sign language as a human rights issue.
“It’s a tool that bridges the gap as far as communication is concerned between deaf people and the hearing society.
“As such we have to consider it as a vehicle that promotes and protects the rights of people and also ensure that the deaf enjoy fundamental rights and freedoms in all spears of life, you talk about access to justice, health education, political participation and participating in public processes and the development process in general,” said Chiusiwa.
However, ministry of health spokesperson – Adrian Chikumbe says the government commits to the principles outlined in the health sector strategic plan which emphasize the pursuit of universal access to quality healthcare.
He nonetheless, acknowledges, the ministry has fallen short of adequately addressing the needs of individuals with disabilities, citing resource limitations as a primary factor.
For Instance, he says: “If we have to print material in braille its very expensive and we just have to rely on government resources, no partners are coming in to support us, but we recognize the necessity to actively involve individuals with disabilities in decision-making processes and emergency health interventions.”
Consequently, Simon Munde, Executive Director of the Federation of Disability Organizations in Malawi – Fedoma, underscores the importance of upholding Malawi’s commitments to the Sustainable Development Goals concerning universal health coverage.
“Let’s ensure that we extend our reach to every individual in the nation, irrespective of their abilities or circumstances. Particularly during health emergencies, let’s ensure that persons with disabilities receive proper care,” emphasized Munde.
The urgent plea for inclusive health and equality in Malawi underscores a fundamental human rights issue, particularly concerning access to health services amid emerging pandemics.
These challenges represent violations of human rights principles and undermine efforts to achieve Sustainable Development Goals (SDGs), especially concerning universal health coverage.
It’s imperative for Malawi to prioritize the full inclusion and participation of persons with disabilities, ensuring their rights are safeguarded in the face of health emergencies, in alignment with global commitments to human rights and sustainable development.
