The Sunday Mail
Theseus Shambare
TARIRO MARANDE (32) has been living with a rare disease for the past four years.
In 2019, she started having migraines that eventually led to a month-long hospital stay.
She was later diagnosed with a rare medical condition known as demyelination. It is an uncommon neurological disorder caused by damage to the protective head covering (myelin sheath) that surrounds nerve fibres.
According to medical experts, it is a debilitating condition that leads to loss of vision, muscle weakness, walking problems, muscle stiffness and changes in bladder and bowel function.
It comes with a huge medical bill every month.
Marande, who lives in Bindura, spends about US$300 monthly (or US$3 600 every year) on medication.
This is a significant amount for the unemployed widowed mother of two.
Her husband died a year before she was diagnosed.
Tariro’s elder sister, Ms Otillia Marande (38), says the disease has robbed her sister of a normal life.
“Tariro grew up a normal child,” she told The Sunday Mail.
“She completed her secondary school and later got married, before having her kids without any problems.
“She then suffered from severe headaches, which immobilised her at times, and she also could not speak.
“We took her to a hospital, where, upon admission, the doctor said her nerves were exposed, giving us the impression that they were like exposed naked live electrical cables.”
After a round of treatment, she said, Tariro seemed to be recovering.
However, she was unable to walk properly or speak effortlessly.
With time, and as the disease took its toll, she could not walk.
Since then, Tariro has been confined to a wheelchair.
“I cannot leave her alone. Even when I go to take a bath, I make sure that I leave her with someone close by because sometimes she suffers from seizures.
“If she has a seizure while no one is around, she may hurt herself,” said Ms Marande.
Tariro even needs assistance when answering the call of nature.
“We do not have other relatives to assist as our parents died some time back,” added the sister, who is also a widow.
“I used to survive on selling vegetables, but now I cannot continue with that because my sister requires my close attention.”
They are presently living off handouts from well-wishers.
“Tariro’s medication requires about US$90 every week here in Bindura, but in Harare, it costs about US$70 when we send someone to buy for us.
“Purchasing her medication is the hardest part . . .
“Taking care of her other needs may be easy, but buying her medication is tough for someone who is unemployed.
“I have sold almost all my property to foot my sister’s medical bills and I am left with nothing.”
If Tariro defaults on taking her medication, she suffers severe seizures and “unimaginable” pain.
Apart from the physical pain, she also suffers immense emotional turmoil.
Transport woes
Compounding her already dire situation is the limited public infrastructure for people in her predicament.
As a result, she has difficulties accessing toilets, as well as public transport.
“Even though her medication is cheaper in Harare, I cannot go there because her wheelchair cannot be accommodated in our public transport.
“I will be charged an arm and a leg for her wheelchair, making the whole exercise costly.”
Tariro also suffers stigma in her community since most people do not understand her condition.
Ms Samantha Sibanda, director and founder of Signs of Hope Trust — an organisation that champions the rights of people with disabilities — said women living with disabilities are in a catch-22 situation.
“Apart from the stigma they endure in communities they live in, the transport system is also inaccessible for them,” said Ms Sibanda.
“They pay double or triple the normal fare, as they need to pay for their assistant and sometimes the wheelchair.”
There was need, she said, for the establishment of paratransit services to cater for people with disabilities.
A paratransit is a public transportation system for people with disabilities, who cannot use buses, commuter omnibuses and taxis.
Director of disability affairs in the Ministry of Public Service, Labour and Social Welfare Dr Christine Peta said Government was committed to enhancing access to affordable healthcare by persons with disabilities through the Assisted Medical Treatment Order (AMTO) programme in public healthcare facilities.
“Persons with disabilities who have severe conditions that demand more than what is provided for through AMTO are assisted through the Department of Disability Affairs,” she said.
Zimbabwe has close to 1,4 million people living with disabilities.
Just like Tariro, many are finding it difficult to lead normal lives.
In 2021, President Mnangagwa launched the National Disability Policy, which is geared towards creating an inclusive society that recognises the rights of people with disabilities.
It is also designed to open up opportunities for them in empowerment programmes.
The policy was crafted as a measure to assist in domesticating provisions of the Convention on the Rights of Persons with Disabilities, which Zimbabwe ratified.
Zimbabwe was one of the first countries to ratify the United Nations Convention on the Rights of Persons with Disabilities in 2013 and remains one of the few countries in Africa with legislation that specifically caters for people with disabilities.
The National Disability Policy will ensure that facilities such as ramps for those on wheelchairs and braille for the visually impaired, among other provisions for the disabled, are found in public places.
