Living with spinal cord injuries

•Our determination to live happily

September 5th of every year is the day set aside to draw attention to the plight of people living with spinal cord injuries. LUCKY UKPERI interacted with some victims of SCI who shared their experiences, challenges as well as expectations from the government and society they live in.

“I went to Lagos to deliver a message and boarded a vehicle from Oshodi back to Ibadan. We had hardly left Lagos when the tyre of our car burst. That was the last thing I knew until I woke up in the hospital some days later.

“Eventually, I was referred to the University College Hospital (UCH), Ibadan, where I was placed on admission for months before I decided I wanted to go home. I tore every document from the hospital and stayed in a room lying on a bed for 15 years, refusing to believe I will not be able to use my legs to walk again.

“I said I would not use a wheelchair, until an aunt of mine spoke to me. Today, I still feel I wasted 15 productive years of my life living in isolation,” Oludayo Olaniyan said while sharing her story with Sunday Tribune.

Olaniyan’s story drew surprise gasps from those present despite the fact that many of them had related stories about the causes of their disability. They were, however, surprised that it took Olaniyan that long to get herself out of depression.

Olaniyan’s story was among the many shared by persons living with spinal cord injuries as part of the activities marking the International Day for Spinal Cord Injury. The September 5, 2020, event was organised in Ibadan by Rebuilding Hope on Wheels Initiatives (RHOWI), a Non-Government Organisation founded by Amina Audu, a lecturer at Federal University Gusau, who has been living with spinal cord injury since age 13 when she had an accident.

With “Covid-19 and SCI: Staying well” as the global theme picked to mark the 2020 World Spinal Cord Injury  (SCI) Day, the occasion provided the platform for RHOWI to bring together persons living with spinal cord injuries from Osun, Ogun and Oyo states to interact and generate ideas for supporting one another. The ocassion was also used to hold an interactive workshop for spinal chord injury sufferers and members of their families.

The workshop created a platform for the victims to share their experiences and challenges, just as suggestions on how to managing their health  during this coronavirus pandemic were also provided.

While giving the opening remarks, the founder of RHOWI, Audu, said her organisation was meant “to bring together persons with SCI and give them a voice in presenting their situations to the society and the government since they are rarely included among those with disabilities.”

Relating his own experience, Mr. Ayodele Awobona, RHOWI coordinator for the South-West, said he developed spinal cord injury 23 years ago, as a result of being made to walk from the bush where he was flung into after the car he was driving had a burst tyre.  He was unconscious for hours until help came his way.

Awobona noted that “people living with spinal cord injuries have been relegated to the background for a long time in Nigeria, especially among those living with disabilities generally.”

He observed that RHOWI has come to change the narrative by using the International Day for Spinal Cord Injury to collaborate with other organisations in bringing together persons with SCI in order to highlight their plights as well as assist them.

But it is not all the victims that developed SCI as a result of auto accidents. According to Olivia Patience, though she had been with the condition for more than five years, it was not because she was involved in an auto or any other accident.

“I was born with my entire limbs okay,” she said. “While I was an undergraduate at Benue State University, I noticed I was having sensations and pains in my legs and limbs. The search for solution made me to drop out of school in 400-level. We came to Lagos State Teaching Hospital where I was diagnosed with deterioration/degeneration of the bones which had become so painful until we had to come to University College Hospital, Ibadan. After a lot of tests, an MRI showed I had compression in my spine, which led to a surgery and my use of wheelchair since then,” she added.

For Alaba Olumide, who was working with a new generation bank , she was returning from shopping for a friend’s wedding when a car, as a result of brake failure, hit the motorcycle carrying her and flung her into a nearby drainage. Her condition deteriorated when her rescuers made her to sit upright while taking her to the hospital.

Sunday Tribune learnt that as they shared their experiences, the effort had therapeutic effects on many of the victims as they learnt from one another the best ways to handle some of their challenges. Their stories revealed the inadequate state of public health facilities as some accident victims developed spinal cord injuries because of the trauma they went through while looking for hospitals to attend to them.

The fact emerged that many first responders to accident victims, including uniformed personnel, lacked basic skills necessary to handle victims of accidents properly. The need for education thus becomes necessary as many of those with SCI would not have had the condition if their rescuers were informed about handling them despite the emergency and urgency to save their lives.

The participants also drew attention to many instances of discrimination from the society and government, just as they called on the government to begin the implementation of the Discrimination Against Persons with Disabilities (Prohibition) Act, 2018, which was signed into law on January 23, 2020 by President Muhammadu Buhari.

While interacting with some of the SCI victims, many of them expressed new determination to forge ahead,  with some even expressing a strong hope of walking out of their wheelchairs after regular physiotherapy sessions. However, for many of them, they have had to stop their physiotherapy sessions due to the high cost of sustaining it.

According to Olivia Patience, “I know I can walk again if I am able to engage in regular physiotherapy session as I was making improvement before lack of funds made me to stop it. This is one area, I’m asking for assistance for,” she said.

According to Alaba Olumide, “It is expensive living with spinal cord injury because many of us need some drugs regularly. For example, mobility is a costly thing as public transporters find it difficult to accommodate us, thereby forcing us to charter vehicles whenever we want to go out. Cost of living is generally high for persons with spinal cord injuries, especially in these times we find ourselves.

“We call on the government to create an avenue to assist us, as well as making it possible for us to have access to public buildings.

“For the artisans among us, one of the ways government could assist them is to patronise their businesses as well as provide programmes and financial aids tailored towards helping them to start and grow their businesses,” she said.

According to Oludayo Olaniyan, she would have loved to start a business if she had someone to support her.

“I need money to start a business as I want to get a shop and sell provisions,” she said.

Explaining how the coronavirus pandemic has affected many people living with spinal cord injuries, as many of them could not access their medications and treatments especially during the lockdown as it used to be, Mr. Awobona called on states and the  federal government to pay more attention to people living with spinal cord injuries.  Many of them, he noted, are going through different stages of coming to terms with their conditions.

“Many people with spinal cord injuries are still receiving substandard treatments in their homes and unqualified centres and many have not come out because of discrimination and fear.

“We call on the government to establish comprehensive rehabilitation centres all over the country to cater for people living with spinal cord injuries as this will go a long way in providing solutions to some of their many challenges,” he said.

Alaba Olumide, who was eventually relieved of her appointment from the bank where she worked as a result of her condition, called on the government to come to the aid of persons living with spinal cord injuries.

“Government should provide funds for our people who want to go into business, and those of us with certificates should be assisted with employment because despite the laws against discrimination, many of us are still told by private organisations that they don’t have provisions for us, thereby rejecting us because of our disabilities,” she said.

Many families taking care of the persons with SCI are not insulated from the COVID-19 pandemic and its attendant difficulties and challenges of caring for their loved ones.

According to the daughter of one of those who attended the programme, “the pandemic has further compounded the financial and physical stress of catering for my father, but we thank God for life. The government should please, come to our aid.”

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