by Samantha Richmond
People with disabilities, especially within the African context, really do have a raw deal in this life. Not only do we usually have to navigate the medical terrain of our disabilities, but we also have to deal with the physical and social barriers that our society imposes on us. I use the word “we” because I myself am partially-sighted and I unashamedly identify as a person with a disability. This notion of “identifying as disabled” is an interesting one and one that in many ways highlights the complex and fluid nature of disabilities as well as the difficulties associated with trying to have a united disability movement. And perhaps this very notion of identification is exactly why African policy-makers have, until now, stayed significantly far away from addressing disability in a more concerted and integrated fashion.
In my capacity as a SCAP researcher, I attended the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) symposium which was held on 28–30 November at the Elephant Hills Resort hotel, Victoria Falls, Zimbabwe. The Elephant Hills Resort was a fitting location, not only for its majestic views of the Victoria Falls, the Zambezi River and all the natural fauna and flora that surrounds these two prominent tourist attractions; but also because it was the first hotel I have been to in Southern Africa that was fully accessible to people with disabilities. The hotel had ramps at every turn as well as elevators for wheelchair users and all the stairs in and around the hotel had their edges painted white for people with partial and low vision. Sign-language interpreters were made available (by the symposium organisers) to those with hearing impairments. Additionally, the hotel staff were friendly and helpful; they didn’t seem at all taken aback or uncomfortable (which most people probably would have been) by the array of disabilities that were present. I think it is safe to say that the sheer accessible nature of their hotel means that they are quite used to hosting people with a variety of access needs.
The broader aims and ambitions of this annual symposium (and in many ways of AfriNEAD) were to explore the multitude of issues involved in conducting more evidence-based research within the realm of disability and in ensuring that this research is subsequently utilised by policy-makers as part of their policy-making processes on issues around disability. This notion of conducting research for policy-makers and policy-making directly speaks to the broader aims and ambitions of SCAP to promote the visibility and translation of research produced in Africa. The interesting challenge that spaces such as the AfriNEAD symposium raise for initiative such a SCAP is: how do such initiatives move beyond the boundaries of the programme and its participating institutions to promote the visibility and translation of research? Research communties outside the framework of the traditional university need a significant amount of guidance, education and support in order to develop more effective strategies to ensure that their research is more visible as well as acessible to a wider community.
One of the other interesting themes that emerged during the symposium was the divide between community-based workers and advocates on the one hand and academic researchers on the other when it comes to the issue of conducting scientific research on issues of disability. The general sentiment amongst community-based workers and advocates at the symposium appeared to be that scientific research was mostly a waste of time, while academic researchers felt that scientific research was fundamental. One can understand this divide within the context of the lived experiences of many people with disabilities within Africa. People with disabilities in Africa still lack access to some of the more basic resources and services. In fact, because a huge portion of people with disabilities in Africa tend to also be poor and from non-urban centres, the question that many community-based workers and advocates ask themselves is, how does conducting scientific research change the realities of the people who occupy the extreme margins of our society? Personally, I don’t think there should be any divide around whether one should conduct scientific research on issues of disability or not; what we should be debating is how we can conduct scientific research on issues of disability that is relevant and has the potential to promote real-life change.
There also appeared to be a general scepticism around the “scientific” method of research itself. Traditional research on disability was strongly embedded within the field of medicine and failed to capture the “voices” of people with disabilities. The general sentiment at the symposium was that research that is conducted on issues of disability within the African context should capture the lived experiences of people with disabilities. I would further add to these ambitions that this research should be scientifically robust. If policy-makers are to start giving more attention to research around disability, the credibility of the research and the research process needs to be sound and rigorous, and this is a hard reality that many researchers working on issues of disability within the African context need to accept.
Overall, the AfriNEAD space was intellectually engaging and personally inviting – it is not every day that I am able to express my own disability without fear of being socially ostracised. Being partially-sighted, I inhabit a very difficult space in terms of expressing my disability identity and this is an experience shared by everyone with a non-visible disability. It was, however, hard (as it always is) for me to experience how people with more visible disabilities are sometimes “handled”, especially during the travelling process (in Africa) and how fellow travellers handle their presence. I think there is a lot that Airlines can do to humanise the experience of travelling for people with disabilities.
Disability is a cross-cutting human rights issue that needs to gain non-marginal status as one. And while the disability movement in Africa, albeit fragmented, is still fighting the battles that some of their comparable movements in the West have already won, we should not lose sight of the battles that are emerging within our ever-evolving society. So, as we move closer and closer into a technological-based society for example, we should always think about how we can, as disability workers and activists, make issues around disability front and centre of this technological revolution. Looking at SCAP’s own context, the issue of disability access as it relates to technology is firmly on our agenda for the programme’s technological implementation strategy in participating institutions.