During our second meeting, Dinara was keen to show me all that she is capable of doing with her feet instead of her hands. Although I have already seen her embroidery, she felt compelled to show me again. She also showed me how she can write with a pen:
Here she wrote my name and underneath it her own. I have since had the idea of making a tighter crop and having her write her full name and surname, and for the image to be used as an introductory slide. Don’t know if this will work or if it’s too kitsch. I will ask Dinara what she thinks – possibly she’d like to write a stronger message, “I’m a person” or something like that… I can even try out both to see which works best. Better to have more material to play with than regret not having made the images later on.
Since one of her favourite pastimes is embroidery, Dinara was keen to show me how she manages to thread beads onto a needle with her toes and create pictures.
I tried to get some close up pictures of the process as well as some wider angle images that show Dinara at work. She told me that she will have an exhibition of her work in a month or so, which means these images will be all the more relevant. I’m trying to get as many different facets as possible in, to show that Dinara and people like her don’t just sit around watching TV all day.
While conducting the interview with Bibigul, it became apparent that my original idea (of showing disabled children that had somehow proved their initial diagnoses wrong) was not going to be practicable for a number of reasons. The first reason was that much of the evidence was anecdotal (one doctor said this, another that) and it would therefore amount to some unfounded accusations of malpractice, and therefore a flimsy documentary (I had initially wanted to try something in the vein of Lonidier’s occupational accident series) possibly opening myself up to libel. Due to the absence of any documentary evidence, as well as the interviewees themselves becoming vaguer once the Dictaphone was visibly present, it seems that such a project is not going to happen. Although my heart sank at the beginning, I decided to press on, and connected with the disability reading I have been doing, have decided to shift the emphasis of the project. Since a large part of disability empowerment seems to be about reclaiming the sense of normality, I have decided to show my subjects engaging in the normal activities of daily life – shopping, cooking, meeting with friends, going to the cinema or a sports game. It seems to me that this is something that is missing from the debate, and it is something that all my subjects feel strongly about – being treated as a person, not as a disabled person. The project will therefore aim at challenging stereotypes that disabled people are unable to (or do not want to) engage in everyday activities, and that they need help and support every step of the way, that they should not be denied the same hopes, dreams and ambitions we all need to survive. The project will still be activist in the sense that it is aimed at empowering the subjects (they decide how they are portrayed), and taking my cue from the example of Downistie, perhaps this is the first step on the way to inclusion. The images themselves may therefore come across as banal when compared to the iconography of Paralympic athletes or other heroic figures displayed in the media; however, it would seem that this is precisely the kind of image that needs to be published if notions and stereotypes are to be challenged.
When Dinara told me that she was going to a shopping mall, I asked if I could tag along. Some of the first pictures were documenting the trip there in a special taxi service that is organised by the local government. Although the service is free of charge, it can be problematic since the number of vehicles available is limited and demand is huge. For this reason, the service has to be booked at least a day in advance.
I’m not sure if I’ll be using these images, since in the final project Dinara should retain a certain amount of self-sufficiency. Pictures like these will merely reinforce the opinions that people with disabilities are a strain on resources and public sector funding. We were not allowed to photograph in the mall itself, and had to agree with the management in each separate boutique to permit us to shoot. Since many of the managers declined, the exercise became tiresome, and after we were given permission to shoot in one of the boutiques I got off a number of shots and left mother and daughter to their shopping spree. One thing I cannot be accused of in my photography is being overly pushy.
The images are successful in the sense that they get the point across – Dinara is just like any other girl when it comes to shopping!
Although I had initially wanted to show the struggles of disabled people in the social environment (something like a day in the life, which shows how the daily things that we take for granted are actually a struggle for disabled persons) I have been thinking that this is actually something that has been done before. What has not been attempted, or at least not visibly so, is the filming of a semblance of normal life – without attempting to make it stylised or in any way begging or evoking sympathy. I want to show hard facts in the photographs; the voiceover will do the explanation. This is not about charity, but about the people, and my strength is in the way that they open up to me and are themselves in front of my camera. If this is my strength, then I need to work with that. Show how the subjects respond to me personally.