Telling about something that you do not really know: blind people are talking about vision!

Abstract

In Turkey, the laws which define disability have become increasingly harsh, and require disabled people to be assessed in order to determine ‘how disabled’ they are. For blind people, as for other disabled people, these assessments have real consequences. This article aims to discuss an appealing piece that arose during a project, which has bearing on how disabled people tend to answer these questions. The participants are legally blind adults. We, as sighted researchers, asked totally blind individuals to describe their vision. Interestingly, they all answered this question without hesitation. The paradoxical nature of this question was only realized during the analysis. We requested the participants to talk about something they do not really know. This might be a reflection of our over-visualized world and might be due to our subtle prejudices. This type of questioning not only has implications for research, but also for assessments of disability in Turkey.

Keywords:

• Disability experience
• blindness
• Turkey and disability
• disability assessment
• talking about vision
• subtle prejudices

In Turkey, disability is defined within clinical, conventional-moral or financial terms (Koca-Atabey 2013; Patır 2012; Pavey 2011). Bezmez (2016) summarized the Turkish context as full of accessibility problems and stigmatization. In addition, the disabled people’s movements are not that strong; thus, the overall environment is not so welcoming for disabled people. In relation to disability assessment, the law says that in order to get any disability benefit, losing at least 40% of bodily functions must be evidenced by the committee report of physicians (Koca-Atabey 2013; ‘Özürlülük Ölçütü’ 2006). In July 2006 the latest legislation was imposed, which enforces the Balthazard Formula to calculate the percentages of disability (‘Özürlülük Ölçütü’ 2006). After this implementation, meeting the 40% rule became much more difficult; as a result, some people who were accepted as disabled became non-disabled just after the practice of that legislation (Pavey 2011). If a person cannot meet the harshly imposed 40% rule, he/she is not regarded as disabled and cannot benefit from any support. However, a 39% report disqualifies the person but does not make him or her non-disabled in everyday life. For instance, with the recent legislation, if a person has no vision the medical system accepts him/her as 80% impaired (i.e. original wording); this was 100% with the previous legislation. An example in relation to attached benefit might be as follows: as a blind person with a 90% report one can get tax reduction when buying a car (for example, Işık 2013) but he/she cannot do that with an 80% report.

These explanations are focusing on how laws explain disability in Turkey. However, in order to understand the big picture, disabled people’s personal definitions and experiences should also be considered. Previous research shows that the social environment for disabled people in Turkey is truly unfriendly (for example, Koca-Atabey 2016; Tufan 2008; Yazıcı, Şişman, and Kocabaş 2011). In line with Shakespeare’s (2008) definition, disability in Turkey is a complex predicament. We started to investigate the experiences of blind adult pedestrians in traffic settings, which ended up with a striking understanding that arose during the analysis of interview data. While analysing the interviews, we noticed that together with the questions relating to traffic experience, we ‘inappropriately’ asked the blind participants to describe their vision (i.e. ‘Could you please describe your vision?’). The strange point was that while preparing the interview questions we did not notice that the question was to be directed to blind people. Our highly educated adult participants’ answers to this question were astonishing and their personal definitions of blindness experiences were linked perfectly to their answers. This fact made us to question our intentions to ask this specific question:

Complete darkness, like night-time, no light. You need to experience … Maybe closing the eyes and completely covering them, no light is allowed. I could not really tell, experiencing is essential. (Mert, male, 38 years old)

It is something like closing your eyes during night, like sleeping, never opening the eyes, complete darkness or there is electricity cut, could not see anything, I think it is like that. (Hale, female, 26 years old)

Perhaps we wrote this question as a reflection of our over-visual world, or our subtle prejudices. The question might be weird in its own right. In fact, the participants were telling about something that they do not really know. Therefore, the incident becomes paradoxical.

For the participants who have acquired conditions, the phenomenon was a little different. Their reference point was their previous vision; however, in most cases this initial vision was variable, impaired and subjected to failures in memory:

There is not even light left … I know what does darkness mean, because my condition is acquired. It is not easy to describe, could not find the right words. There is no darkness, no light, something different, I could not describe it with means of a colour, I can feel the shadows but there is no colour. (Filiz, female, 45 years old)

My vision is like looking through a misted glass, there are objects but no sharpness. When your vision is very low, it is hard to describe. (Burak, male, 36 years old)

Talking about vision depends on someone’s specific experiences. For instance, if you never look through a misted glass, it might be hard to describe your vision by referencing that experience. One of the participants highlighted the importance of different personal experiences:

Maybe there is not a definition for the ones who born blind, I became blind at the age of 16. Until that age, I have 10% vision. This 10% vision is something like seeing or realizing that a bus is coming from twenty meters away but could not read the number until it is one meter away. However, you can see the sun, airplanes, the moon or your face, and everything … If I say to you something like navy-blue, you can immediately visualize it, a dark and shiny blue, I know what it means because I saw it. My left eye does not exist at all; for my right eye, maybe that is because I could be able to see before, like wearing women’s socks on your head, grey … It is smoky. (Salih, male, 36 years old)

From time to time, visual input might be supported by other senses, for instance:

You could not perceive the incidents or objects, at least not visually. Not complete darkness but a dim environment. I can realize the lights in a billboard, or the sunlight that was reflected towards this area, I could notice you as an object, I can feel that you are taking notes but I cannot see. (Okan, male, 28 years old)

Harpur (2010) argued that as a totally blind academic, because he never accessed written comments on his papers and did not recognize the importance of this kind of feedback, he ended up providing low-quality written comments to the students. He successfully and easily overcame this issue after a few exercises. This is a compelling example showing that disabled people might come across matters that are completely new and unfamiliar to them. Even though it is hard and sometimes impossible to describe, all participants, even those who are blind from birth, described their ‘vision’, which is inherently ironic. This was most probably because they had come across our question (‘Could you please describe your vision?’) millions of times beforehand; because we, as visually oriented people, have a disturbing curiosity. Whether they experienced vision or not, the participants of this study learned to answer this question in some way. Their answers are social constructions, which of course is also the case when they are answering assessment questions to claim disability status. Answering such an odd question might be a socially adaptive feature for the participants. None of the participants seemed uncomfortable with our somehow inappropriate question, with the perspective that at least somebody, the researchers in this context, is dealing with the problems they encountered at specific settings in life.

The factors and characteristics related to the blind people’s easy answering of a vision-related question deserve detailed scientific attention; because it is not clear from the literature whether specific variables, like some culture or individual-related characteristics of blind people, would make them highly adaptive in taking the perspective of sighted people. For instance, as Hofstede (2001) defined, Turkey as a collectivistic country has a culture in which people’s self-image is defined in terms of ‘we’ and open conflict is avoided. Belonging to in-groups where people look after each other is important. Additionally, having feminine cultural characteristics, Turkey is a country where caring for others, consensus and sympathy are valued; standing out from the crowd is not appreciated. The blind participants of the present study may be reflecting these cultural characteristics in their high adaptation to the visually oriented questions of the sighted researchers. It seems easy to simulate blindness (e.g. blindfolding); however, blindness is something more than losing sight so it could not be easily pretended. A sighted person who closes his or her eyes would still have the shapes, colours and figures in mind (Hull 2001). If this is the case and sighted people could not really describe or experience blindness, then assuming the other way round (i.e. explaining vision as a blind person) is just unfair. This perspective is also in line with the negative and counter-productive results of the disability-related simulation exercises (for example, French 1992).

We, as the researchers of the present study, aimed to focus on the experiences of blind adults at traffic settings in Turkey. However, we ended up with an unexpected reality concerning the general life experience, understanding and perception of blind people. This reality was so tacit that we, as the researchers, were not able to recognize it while structuring the study. As a result this article focused on a self-criticism that the researchers directed towards themselves; it is equally valuable, however, when considering the assessments for disability status which blind people in Turkey have to undertake.

Disclosure statement

No potential conflict of interest was reported by the authors.