When I speak to people, I humanise disability'

10 June 2016 | Story Chido Mbambe. Photo Michael Hammond.
Victor's positive attitude has given life a whole new perspective.
Victor's positive attitude has given life a whole new perspective.

Victor McKinney was an active 19-year-old fine art student at Michaelis when a road accident left him paralysed from the neck down and robbed him of his dad, who was like a best friend to him. But he has used his challenges to rebuild his life, find happiness and advocate disability rights.

When Vic came out of hospital, it took a long while to adjust to his new life as a quadriplegic. He always had an interest in academics, so a year later he pursued his studies through UNISA.

Vic says, “I didn't have any direction. I just wanted to do something to keep my mind active. I was terrified of becoming brain dead. I had seen a lot of people in hospital and in homes just become completely institutionalised and that would terrify me. I made myself get up every day.”

He studied English and psychology through UNISA, which proved to be a challenge. Typing assignments was extremely difficult as there were no assistive devices at that time.

“The latest technology I had – on an old computer which was donated to me – was sticky keys,” explains Vic. “I had a stick in my mouth and I was like Woody the Woodpecker at the keyboard typing 1 000-word essays letter by letter till late at night … but that's what it was at the time and I got good marks because I put a lot of focus into it and it encouraged me to study.”

“A key thing about my disability is that it's incredibly tedious. It takes an hour and a half to get up in the morning, another hour and a half to get somewhere just to be in a meeting for half an hour and then come home,” says Vic. “It's like I'm knee deep in water at the sea and everybody is walking on the shore. That's often how I feel. Psychologically, it's a challenge.”

Vic says that his mother's strength helped him to cope in those first few difficult years. His rehabilitation was painfully slow, but he has since found a way to move on by helping other disabled people. He is also an accomplished artist who paints with his mouth – the hobby stems from his passion for photography.

Turn terrible events into something that will enrich your life

While studying, Vic developed an interest in township disability day centres and started campaigning for better public facilities and equal rights in education for disabled people.

In 2003 UCT launched the MPhil in Disability Studies, which was aimed at improving an area of research that has been largely neglected by academia.

“It was fantastic because they wanted to get people with a disability who had lived this pioneering stage and been through the change of the country since the 80s. We'd lived this 'movement' of getting disability recognised and it was to get us involved to tell our story and carry on and publish at an academic level,” says Vic. “I got accepted into the master's course and then never looked back.”

Vic graduated with his MPhil in disability studies in 2008 and enrolled for his PhD in disability studies in 2009 to explore the preparation of civil engineering undergraduates to contribute to an inclusive society that accommodates people with disabilities. The biggest challenge in Vic's academic career has been typing.

“Coming far from those stick-in-the-mouth days, I now have voice-recognition software and my other assistive devices. At the computer, I wear a dot on my forehead and the camera detects the movement of my head and follows that, and it has a mouse function as well,” says Vic. “Just by moving my head, I can operate a computer, but that, of course, is still slow. Even with the voice-recognition software, my work still needs editing because sometimes I speak too fast or mumble when I'm tired.”

Another challenge has been getting around campus. His first year of postgrad studies at UCT was incredibly challenging as he had to adjust to getting around, changing buildings and using an elevator in a wheelchair.

“Just getting around in general is tough, and some of the lecture theatres are inaccessible, but I admire the way they have taken it on. I think they've done pretty well considering the terrain,” says Vic. “But I've been lucky because by the time you're doing postgrad most of it is correspondence – you don't have to be there all the time.”

Draw on the available support

His wife, Emma, and their two sons, 16-month-old Benjamin and four-year-old Jamie, are his greatest inspiration.

“Emma inspires me a lot to do things and be better at what I can do. And my boys. I never had as much focus until I met Emma,” says Vic.

They met when Emma was working at UCT's Disability Unit while completing her PhD and he was completing his master's.

“That's a good pick-up joint,” says Vic with a beaming smile. “Enjoy student life? I never got the chance to do that in the first year. I loved it, but I had to mature very fast … I just had to get on with it, and here we are.”

Having Emma around, and mentors who believe in him, has motivated Vic to push through the difficulty and has played a huge role in his success.

He mentions a few: “From the master's days, Dr Brian Watermeyer, who was my first supervisor and one of the convenors of the MPhil course. Professor Theresa Lorenzo I've known since community development days in Crossroads and Philippi … And of course Prof [Seyi Ladele] Amosun has been fantastic. He's taken my academic ability to research and work to a higher level.”

You're capable of more than you think

His wife Emma says: “To think that people take two seconds to get out of bed and start their day. For Vic it can take an hour and a half to two hours; but people with a headache complain. It's about choices and seeing the positives. He's one of the most positive people I know and one of those quietly inspirational people.”

Vic acknowledges the hardship that comes with disability, but advises other disabled students to just stick with it.

“I know it's tough, but the old saying I use is: 'How do you eat an elephant? One bite at a time.' When I started studying, I had no idea I would finish, but I got here.”

“People say I'm an inspiration, but I don't consciously think about that. It's about trying to live my life. If I've inspired people along the way, then that's fantastic. That's why I enjoy speaking about it because it just shows what can be possible,” he says.

Collaboration is key

Exclusion from society has been one of Vic's biggest challenges. He went from scoring the winning goals in UCT's soccer team to being paralysed overnight.

“It was a big shock. The fact is that now disabled students have the right to be here. The law is on their side – we didn't have that in the early days,” says Vic.

“Fight together and learn to work with the system instead of always working against it,” he advises. “I've learnt that you've got to work with people. I often say to people, 'How can I help you help me?' Collaboration is key.”

Completing his PhD took two years longer than he had anticipated, but he is thankful for the constant support from the Harry Crossley bursary and Tshikululu Social Investments.

“In any journey you will learn a lot of things. You might not get to where exactly you thought you would be, but you will learn a great deal along the way.

“Just stop thinking about the time and get back to the journey and try to stay on that and also reach out to people, they will help you. I've got a lot of help from a lot of different people and I didn't expect it'” says Vic.

He recalls one particular instance: “It's difficult to fly, but I love doing it. In 2010 we were preparing for a conference in Belfast and we got unexpected sponsorship from Professor Danie Visser … Those are the special moments that energise you and make you appreciate what you are doing.”

Believe in yourself

When Vic became disabled, he was told to go live in a home. His mother refused and he has fought to be included in society since.

“When I went out in the early days, I would see only one or two other people in wheelchairs and that was it. But now people are out at the Waterfront and everywhere.”

Vic believes that South Africa's biggest challenge for disabled people is a lack of inclusion. When he talks to people, he tries to make them understand that being in a wheelchair does not change who you are and your need to be part of society.

“When people meet people with disabilities, they generally don't know how to react. When I speak to people, I humanise disability; I give a face to disability. And they realise I'm human and we're equal. I think that's the key difference.”

“I've seen how it has worked overseas, I've been fortunate to be in Belfast twice in the last five years. I've seen how it's changed, and they are creating an inclusive society; we don't have that here yet but it is great to know that it is possible.”

Vic will be travelling to Lancaster later this year to present at the Disability Studies Conference at Lancaster University. He also plans to get stuck into postdoctoral research, lecture and get involved in disability research.

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