Advocating for rights of disabled South Africans
Canon Collins alumna Cleone Jordan is a researcher and activist whose mission is to work towards improving the lives of persons living with disabilities in South Africa.
In July 2017, Cleone became the first person to be awarded an MPhil in Disability Studies with Distinction from the University of Cape Town. This was a huge academic and personal triumph for Cleone, who was admitted to the MPhil after completing a PGDip in Disability Studies, having been given the opportunity to further her studies without a formal undergraduate qualification, based on Recognition of Prior Learning (RPL).
After sustaining a spinal injury in a road accident that left her wheelchair bound, Cleone spent many years working in the disability sector at grassroots level and has developed a nuanced understanding of the gravity of the isolation and many injustices faced by South Africans living with disabilities, such as exclusion from education, adequate housing, employment and community life.
We spoke to Cleone about the barriers faced by people living with disabilities in South Africa, the disconnect between the rhetoric of human rights and the lived experiences of marginalised individuals, and her important research exploring how access to information could lead to greater livelihood opportunities for disabled youths. In addition, Cleone told us about some pioneering medical research that she has been involved with that has the potential to change the lives of people living with spinal cord injuries.
It has been twenty years since you sustained a life-altering injury. How has your understanding of equality and access to opportunity in South Africa changed during this time?
After being involved in a motor vehicle accident which left me paralyzed and wheelchair bound, I found that the stigma attached to disability, the inaccessible environments and the blatant disregard and exclusion I felt from society made me question my value as a person. In addition, it made me question how accepting society is of this discrimination and how unnoticed it went. What became paramount as time went on, was that I could no longer ignore the calling do something ‘real’ about improving the quality of my own life and those of other disabled people and this is what compelled me to become involved with grass roots work, and later academic research, in the disability sector.
Over the years, I have witnessed gradual change in terms of how people living with disabilities are treated in South African society, and this change has accelerated and become more visible in recent years. Overall, social and economic opportunities are more easily accessible now due to the internet and widespread use of social media. However, accessing these kinds of opportunities largely depends on where, on the ‘disadvantaged scale’, you fall, taking into account intersectional identities such as race, class and gender. I was lucky to be able to access a number of opportunities to work and study but many persons with disabilities simply do not have the means to access the relevant information and remain isolated and uninformed about their rights.
What are the major factors preventing people living with disabilities from enjoying full access to the rights enshrined within the UN Convention on the Rights of People with Disabilities and ratified by the South African government?
Increased knowledge and understanding of what these rights are, and the ability to easily access relevant information, would greatly aid people living with disabilities in enjoying their rights. For instance, it is understood that being employed greatly improves a person’s overall well-being, however, often disabled people who live in disadvantaged communities will find it impossible to access employment and may not even realise that there could be be resources available to assist them. Many people simply do not understand the benefits of having a constitution that is supposedly working for them in order to improve their well-being. There is an understandable disconnect between the aspirations of international human rights mechanisms and the daily experiences of marginalised South Africans living with a disability, who often remain excluded from access to education, proper housing, transport, employment, information and community life. A solution would be to promote access to vital information for the majority of persons with disabilities at a more grass roots, community-based level.
How do you feel that your academic research, examining the availability of information on livelihood opportunities, can contribute to the empowerment of disabled youth?
I feel that much more awareness must be created on how to access information that could lead to the empowerment of disabled youth. The recommendations in my research highlight the need for an integrated service to be provided to the disability community which offers accessible technological services, communication services and other commercial services. The Disability Advice Desk project which is a project operating in disadvantaged communities within the Cape Metropole will thus be targeted as a one-stop information, services and communications channel that supports everyone involved in the disability sector – including persons with disabilities, caregivers, medical professionals and those offering services in the domain of employment and other areas.
You have recently been engaged in some exciting and innovative pilot research projects. Could you tell us about how these programmes has been contributing towards your own rehabilitation and could change the lives of people living with spinal injuries?
I’ve been involved in two research projects over the past year. The first was with University of Stellenbosch and University of East London and its focus was on Disability and Sexuality. The second project was with UCT, where I was privileged to participate in pioneering research comparing the effects of robotic walking and exercise activity-based rehabilitation on individuals with an incomplete spinal cord injury. The scientific community does not fully know what the long-term effects of robotic walking are when compared to exercise activity-based rehabilitation. This study hopes to fill those gaps of knowledge.
As a healthy individual with an incomplete cervical spinal cord injury, I was invited to participate in the study as I have a greater chance of recovering muscle activity and bodily functions. Participating in the programme required that I attend 3 rehabilitation sessions per week for 24 weeks at no cost. I was selected to do the conventional rehabilitation and after the 24 weeks I had access to continued rehabilitation for a further 12 weeks. I have chosen to try out the robotic exoskeleton (Ekso Bionics) for the additional 12 weeks.
I am now 7 weeks into using the robotic exoskeleton and it has been incredible to see and feel how much of my body ‘works’ after being in a wheelchair for 20 years. I would never have been able to access this type of treatment if it were not for the programme, and now that I’ve experienced it I know that I must continue. I have made huge progress in the past six months via this programme so I am more convinced than ever before that I can recover muscle activity and in time will do things I never thought possible.
Cleone is appealing to the Canon Collins Alumni Network to pass on any contacts or funding opportunities that can be used as a means of building a resource base for herself and other persons with disabilities who would be able to access this type of rehabilitation that is potentially life changing. She is eager to connect with alumni who are active in the fields of public health, disability or medical research in order to access further networks of support and expertise.