On 20 November 1994, Alan Downey suffered a life-changing injury that confined him to a wheelchair for the rest of his life. Downey became a C5 Quadriplegic as a result of a horrific diving accident. Through his digital information portal, Disability Information South Africa (DiSA) he has found his purpose in closing barriers faced by persons living with disability in South Africa.
With the intention to bring awareness and easy access to information for persons with disabilities, the site links the information with relevant service providers to assist them. Alan believes that access to equipment, information, services, education, buildings, transport, health care, and sports is a basic human right that is fundamental to creating an inclusive South Africa.
Downey was born in the Transvaal but basically spent the majority of his childhood in East London in the Eastern Cape where he was educated.
Shortly after completing school and completing his military service, he started a job as an apprentice panel beater.
‘The moment my life changed’
Downey can still remember the day his life changed nearly 40 years ago. “At 21 I was injured. I am now 49,” he says.
“I dived into a river and hit a sand bank, broke my neck. My whole life was turned upside down, I had lost my job and independence and couldn’t take care of myself, so had to rely on my parents for everything.”
As an avid sports fanatic, he had to face a new reality. He could no longer take part in the sports and activities he loved doing. “I sometimes asked myself ‘why me?’ or think to myself ‘what if I hadn’t dived into the river that day?’ or ‘if only I had an undo button’.”
While in hospital, he was told by a friend, “The quicker you accept your disability, the quicker you can get on with your life.”
After realising that he had to accept his situation before he could move on, he started focusing on what he could do, rather than what he could not.
“I started drawing and painting again which was a great form of therapy,” he says. “Eventually I got introduced to computers and started doing web design with a friend who was also injured at the same time as me.”
‘We rise by lifting others’
Downey founded DiSA in 2015. His mission was to provide a free disability information portal which not only gives easy access to information via its website but also through its free contact centre, offering advice and guidance to those in need.
“We needed to basically create one solution for trying to solve a problem – a big problem was access to information and also access to the environment, whether it be healthcare or buildings or transport,” explains Downey.
DiSA was built on four pillars:
- Information
- Identifying barriers
- Reducing barriers
- And an educational YouTube platform.
By providing all this information in one place and linking all the service providers together, Downey hopes to make the lives of persons with disabilities that much easier.
“We provide a one-stop information service which supplies information for four main disability groups in South Africa, which include persons with mobility impairments, hearing impairments, visual impairments and intellectual impairments.”
Understanding disability
He defines living with a disability as any condition of the body or mind [impairment] that makes it more difficult for the person with the need to do certain activities and interact with the world around them.
“The white paper says that we need to be referred to as persons with disabilities. We are a person first and we have a disability second,” he says.
“Disability is an evolving concept, disability is imposed by a society where a person with a physical, psychosocial, intellectual, neurological or sensory impairment is denied access to full participation in all aspects of life.”
As buzzwords like social justice, equity, and inclusion permeate our collective vocabulary it’s essential for advocates of progress to remember another ‘ism,’ one that is frequently left out of conversations, Downey believes.
Ableism.
“Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior.”
Barriers are a reality
Financial barriers are the most common roadblock in accessing treatment for persons living with disabilities.
“Not everybody can afford medical aid and even with medical aid, it still becomes expensive. You’ve got the co-payments and you have got the equipment which is part of healthcare at the end of the day,” he says.
“A lot of equipment is imported so, besides the normal costs, you now pay extra because of the weakness of the Rand and export duties.”
Downey illustrates another example of a barrier faced by disabled persons and says that transport is another crucial factor. “Public transport isn’t always accessible. In most cases, it is not accessible to persons with mobility impairments.
“You need transport to access healthcare and accessible transport for persons living with a disability specifically persons with mobility impairments can be up to 10 times what a normal person would pay.”
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