Stigma & Discrimination: A Thorn in Life of People With Disabilities
It is an undisputable fact that education is a catalyst for socioeconomic development in all aspects of life. But much as education is touted as the key to empowerment and future self reliance, some children are unfortunate enough. They are denied such opportunity due to multiple factors.
Some of them languish in homes, with there future so bleak and blurred, with no ray of hope.
Little girl Eva Nkhoma is one of such children whose chances of attaining an educated have faded away. Now aged 11, Eve has never stepped in the yard of any school, let alone face the blackboard.
The only crime she committed is to be born with a physical disability and speech impairment. Her two legs are strangely too weak to merely support her to stand and walk and can not dare a full sentence to communicate. Any activity and movements she affords are solely at the mercy of her closest partner, her mother and sometimes other members of the family.
In very rare circumstances, when every family member disperses for different but very important errands, little Eve is caged in the house, for the sake of security, members claim.
Eve's desperate situation is merely a tip of the iceberg as hundreds of children with disabilities in our communities have no one who seriously considers their welfare.
Children with disabilities are merely victims of stigma and discrimination, which, to some extent, testifies that the community has left their destiny to fate. Besides their parents, no one seems to care about their affairs, including their right to education and health, among other crucial life-line needs.
Prioritizing issues of disability in resource allocation in various forums is always an afterthought.
For example, no one has come forward to bail out Eve with an assistive device, like wheel chair, to ease her long term mobility challenge, that could have enabled her to enrol in primary school.
Her mother, Esther Nkhoma living around Chimkusa location in Mzimba is practicing hard surveillance on the girl.
Since her birth, she has voluntarily tethered herself within the surroundings of her house to fend off stigma that can wear off the rationale of life to her.
"I can not leave her alone for long hours. Who will look after her when I am away? She doesn't walk, she doesn't speak and can't eat on her own" laments Nkhoma, ostensibly suppressing tears.
Nkhoma says her daughter has no wheel chair, a development which offers another dilemma not only for her but for all family members who rotate in taking care of her.
"Just if she had at least a wheel chair, it was going to be a big relief to her and the family. It was going to be easy for her to access services like medical care. We could easily wheel her to the nearest health facility when she falls sick.”
Meanwhile, income constraint Nkhoma has no option but to part with her hard earned money to hire taxis to and from the hospital, when she feels unwell.
Mothers like Nkhoma are not economically empowered to effectively and effectively support children under their care
Most times women like Nkhoma are not included during relief distribution exercises and social cash transfer schemes, which are better placed initiatives to capacitate women to ably meet the needs of their disabled children, independently.
In times of disasters, relief efforts are not stretched to families with disabled children. Relief packages do not include devices for children with disabilities, such as wheel chairs and other assistive equipment
" I am not in any government safety net programmes, be it social cash transfer, AIP or any charity initiative run by government or NGO which can help me sustain my life and that of my daughter economically" she complains.
Nkhoma feels she is discriminated against when it comes to other activities happening in her community as some say caring for her daughter is like caring for someone who is already dead.
Nkhoma's story resonates well with 42 year old Mbateta Kamanga from Simulemba in Kasungu but residing at ST Paul's location in Mzimba. His is a double tragedy as his two children aged 9 and 6 do not walk after long illnesses in their early years.
Kamanga who lives on less than a dollar a day due to the nature of piece jobs he does says life is nightmare.
He feels government and non state actors should come to his rescue.
"Despite our challenges we are not being helped by government, there are no wheel chairs for the children, we feel government and the community are sidelining us from social nets like mtukula pakhomo"
Agnes Chisi from the area of Inkosi Mabulabo in Mzimba district was born without any disability.
But Chisi lost the use of her legs and hands in 2016 after a long illness.
"Am alone in this world, I can't move my hands, my legs. I need help even when I go to bed." says Chisi
She says her 5 year grandson is the only one who helps her in her time of need as her husband died 20 year ago.
" I am tended to by a very small boy and some of the tasks in caring for me are purely horrible, a disgrace and taboo to him,” she says.
She added that her desperate situation drives some misguided people to liken her with a dead person.Her problems take another turn when she becomes sick as noone is willing to come to her aid, to take her to the hospital.
"Some people pour ridicule on me saying I lost the use of legs and hands because I fell off a witchcraft plane such words haunt me for days" says Chisi.
The sad reality is that disability is often intertwined with poverty. In instances relatives take delight in planting people with disabilities in strategic places along the road deemed ideal for begging.
According to the 2018 population and housing survey, Malawi has a population of over 1700000 people with disabilities which represents 11.6% of the total population.
Alex Zinkambani is the general Manager for Malawi Against Physical Disabilities(MAP). Zinkambani says people with disabilities face stigma and discrimination even in their own families.
"Its a very common problem, people with disabilities are stigmatized and discriminated upon, they are sidelined in many social activities, they are sidelined in decision making forums and they are even pushed away when they are supposed to access social services, they are pushed away on the grounds that they have disabilities which puts them into a situation where they live uncomfortably in their communities"
Zinkambani says people with disabilities are sometimes thought to be useless in the communities and are sometimes frown upon when seeking health services as if there physical state does not warrant them to seek such services like contraceptives at health facilities a thing which affects them pyschologically
"They are ridiculed in school by other abled learners, infrastructure in some schools is also prohibitive to learners with disabilities as some without wheel chairs or other kinds of assistive devices cannot craw to help themselves without assistance"
However Zinkambani says as MAP to help people with disabilities with assistive devices like wheel chairs, walking sticks to assist them to be functional independent, they work is hampered by lack of sufficient resources despite government giving them a small subvention.
"Resources are a challenge we are always trying to pool resources so that we are able to reach a lot of people with disabilities with assistive devices, we are in all the regions but our biggest challenge is insufficient funds this makes as fail to have an impact that we would wish to have in helping people with disabilities"
"We plead for collaboration in helping people with disabilities, many organizations may come in some with various skills to offer to people with disabilities, some helping out with loans to people with disabilities and continued efforts in sensitizing communities against stigmatizing and discriminating people with disabilities in the society we need communities that know that people with disabilities must not sidelined in any way"
Such assertions are shared by the Malawi Council for Disability Affairs(MACODA) an organization with mandate to champion the interest of people with disabilities.
It's spokesperson Harriet Kachimanga says they have now intensified awareness campaigns to ensure that communities are not sidelining or discriminating people with disabilities.
Kachimanga says they have now been empowered by the new disability laws the person's with disability act passed in 2023 where MACODA is now able to handle complaints from person's with disabilities and can now investigate violations against people with disabilities
"Under this law we will now be able to handle complaints this is the law which will ensure protection of the interests of the people with disabilities and also with the new law we will be able to regulate practices of service providers in our communities and the country at large",said Kachimanga.
She said they are also capacitating duty bearers so that they are aware of the rights of people with disabilities so that they are not sidelined in any government safety nets which are being enjoyed by others in the communities they are living.
"We are building the capacity of duty bearers in charge of any safety nets so that whenever they have these initiatives in place people with disabilities should not be left out because it's there right to enjoy such interventions whether from government or the private sector", Said Kachimanga
On it's part the ministry of gender and social welfare concedes that people with disability are facing stigma and discrimination in the country describing it as something which is entrenched in the Malawian culture.and this denies them their right to enjoy their human rights.
Pauline Kaude is the ministry's spokesperson. Kaude says the ministry is also dismayed with continued stigma and discrimination against people with disabilities.
"It is something that society has lived with for decades, as such to undo it is a process, to change people's perceptions and the way of thinking in this case requires concerted efforts", Said Kaude.
Kaude said the Ministry is implementing a national disability mainstreaming strategy with the aim of promoting public and private sector led programmes that are inclusive and take cognisant of the needs of persons with disabilities.
According to Kaude plans are under way to have a targeted Mtukula Pakhomo programme where, among other vulnerable groups, persons with disabilities will specifically be targeted to address the current situation.
On assistive devices, Kaude says the Ministry of Health is working to capacitate Malawi Against Physical disabilities (MAP), so that it continues to produce locally assistive devices such as wheelchairs and clutches, and provide other rehabilitation services across the country.
Government, non stakeholders and development partners must collaborate and up their efforts if people with Disabilities are to enjoy services enjoyed by everyone else.
Such efforts should also be channeled to nipping stigma and discrimination in the bud as it remains the genesis of people with disabilities face on a daily basis in some instances sending them to an early grave.
Pictures by Vanani Nyirenda
Agnes Chisi "Sometimes am ridiculed that I fell from a Wich craft plane that's why I cant walk or use my hands"
Esther Nkhoma "We done even have a wheel chair for my daughter"
Harriet Kachimanga "We have now been empowered by the 2024 persons with disability act to investigate complaints from people with disabilities"
Last modified on Monday, 29/04/2024