We had previously arranged that I would continue working on the photofilm and send in the completed version for us to discuss, but unfortunately I suffered a particularly acute bout of uveitis (used to be called iritis, basically an inflamed iris, which causes photophobia) and was unable to look at a computer screen for over a month until I had completely recovered. The treatment for this condition in UK is steroid eyedrops, which are not sold at all in Kazakhstan.
Ironically, doing a project on disability I was reminded just how much I rely on vision for almost everything I do, including work, studies and leisure. I was also made acutely aware of how people stare at something which marks you out as physically different and demand an explanation (Goffman and stigma). Anyway, I had not done any work on the film, but was able to get photographic material from the other participants. I therefore suggested that closer to the time of our tutorial I would send my tutor the images and notes from my journal, and he agreed that it was a rational solution.
Although I had practically given up hope on Adilzhan, he seems to have sorted out his issues and we have been able to meet up on numerous occasions. Nevertheless, his unreliability has made me keep him on a back burner, and I’m not sure if I’ll use the materials to make a film. In this series, he wanted me to show how he doesn’t just communicate with disabled people, but numbers among his friends able-bodied people as well. This is something that I’ve noticed about disabled people, that they tend not to seek out each others’ company, and there are several reasons for this. Yernar told me that to begin with he couldn’t understand disabled people – in the sense that they were all self-pitying and had no drive, and so he tended to avoid them. Dinara told me that being around non-disabled people helps her to feel ‘normal’, in other words she isn’t focusing on her disability, while it also encourages her to socialise and behave in ‘normal’ ways (shopping, going to the cinema or out dancing). Being accepted as an individual by non-disabled people must be a huge boost to one’s self-confidence.
Adilzhan had invited some friends, Aziz and Natasha, to come over for tea. When I arrived, Adilzhan was showing Aziz his appliqué work that he’s hoping to sell.
After a while we went to the kitchen and sat down to tea. I was after shots that that show the people interacting in a ‘normal’ way.
I tried out a number of angles, to include as many people as possible as well as the table itself. Daylight streaming in from the window played havoc with my light meter and white balance settings. After some time the women left the table and Aziz and Adilzhan were left to more serious man talk. I moved in to get some more close up shots, but looking at them again, I don’t think they function as well as the wider angle shots for this project.
The shots I think will work in the context of this project, since they show Adilzhan interacting with his guests in a relaxed and confident way, though I do need to work on the shadows and white balance:
Afterwards, Adilzhan saw his guests off:
Then we went back inside and Adilzhan began to call up some friends and arrange to visit them. In these photos I wanted to show how he called the taxi and managed to get inside himself. This demonstrates how self-sufficient he is:
I’m not sure if any of these images can be used, but the more material the better. Maybe they can be used as filler – it depends on the content of the interview material.
Since we agreed that the main focus of our project would be on how Adilzhan places importance on exercise and keeping fit, we arranged to shoot at a concert where the ARDI break-dance team had been invited to perform. I arrived before the other guys and was able to shoot how Adilzhan and Slava, the team’s leader negotiated the stairs at the venue.
Prior to the performance, the guys got warmed up and rehearsed. Three of the team members are non-disabled, while the other members have disabilities – chiefly CP and oligophreny. Dance is a way for them to exercise and express themselves, and also serves as a locus for socialising. The guys have a lot of fun, and the non-disabled dancers (who are also the trainers) are not condescending in any way, but very supportive.
Not sure if any of these images will make it to the final cut, it depends on whether I decide to use the break-dance photos themselves, really.
As usual with theatre photography, the lighting makes life very difficult but the end results can be very dramatic because of the dense shadows and lighting contrast. Using a fast lens and slower shutter speeds helps, but not when the subjects are dancing! Since these images show an activity that none of the other participants are engaged in, I will most likely use at least one of them. I will need to get Adilzhan to speak of the importance of dance, and how it helps him to express himself or feel like he is participating in something meaningful.
The images I am looking at using here are the following:
Adilzhan’s handstand shows he has strength and determination, the rehearsal shot also combines well with the photo of the performance itself:
One of the other important areas that we agreed to show was work, as this is one of the areas identified as a specific problem for disabled people. Adilzhan tries to do what he can to earn money, as he told me: it’s a matter of importance (and not a little pride) for a man to be self-sufficient, particularly in Asian society. He showed me some soaps that he had manufactured with a view to selling them on local craft markets. The problem is that this does not provide a steady income, and requires the materials to be bought up front.
I’d like to get some images of soap-making, but since the materials cost money, which is a bit of a raw nerve with Adilzhan, I try not to push the issue. There is also the possibility of me giving him the money, but I have some issues with that.
On this particular visit, we went to the local mosque, where the caretaker, Farkhat, is teaching Adilzhan how to repair shoes.
Since we had not agreed beforehand that we were shooting, I put my camera away until we’d explained to Farkhat what we were doing and the significance of the project. Once he’d listened to me, he agreed with enthusiasm, and told me that it is a worthwhile project. Later on it turned out that his niece is also disabled; this may not be the reason why he agreed, but I have found that people who have a disabled member of the family, or have had some contact with disabled people are much more open to talking about disability and the stereotypes and stigma attached to it.
The idea is that with this knowledge, Adilzhan can then go on to repair shoes himself and make money. We went to the market to get some supplies, and then back home to get to work.
Very soon, Adilzhan’s first real customer appeared – his neighbour who needed her trainers resoled:
I managed to get some good shots of this process, just which pictures and how many I end up using depends on the interview material again. The following are the images I am considering using at the moment:
The first image shows the learning process, and Adilzhan is really engaged with what Farkhat is explaining, while the second image clearly indicates Adilzhan is putting his training into practice, as well as showing his incredible physique.
This time when I arrived Adilzhan was hard at work, resoling a pair of boots.
It was quite a cold spring day, and Adilzhan was outside in the sunshine. Unfortunately this meant strong shadows and reflected light, so I waited for the sun to go behind the neighbouring house. Although there was no longer direct sunlight on Adilzhan, it was reflected strongly from the fence behind and so the background is blown out in these images.
Taking a wider angle view meant that the background did not get blown out, but then I had the problem of including the peripheral items in the yard, such as garbage and a parked car, which were distracting.
The problem with these pictures will be whether or not they fit in seamlessly with the other images in the film, since they have an entirely different atmosphere to them. On the other hand, when we went inside for tea, I managed to get some nice shots. One thing that is bothering me is that in a lot of the material Adilzhan seems pretty isolated, on his own, which is certainly not the impression I want to give.
I found Adilzhan working again – this time he was embroidering a tubeteika. He bought the cloth cap readymade, and embroiders it to sell at a profit.
This time some visitors came to see Adilzhan, Askar and Malika who I’d begun shooting for the project before I decided to focus on people with CP. As is typical among young adults these days, it wasn’t long before mobile phones were unpocketed and they began showing each other photos or video clips…
Since this is a significant aspect of contemporary culture, I think it is important to show such images. We sat down for tea, as usual
And then went out for a trip to the shops, Adilzhan wanted to buy a T-shirt.
Unfortunately, they didn’t have the colour and material combination that Adilzhan was after. I think it is important to show that disabled people are fashion conscious, since a common notion among non-disabled people goes something like: “why should you bother what you wear or what you look like – you’re in a wheelchair!” as if this disqualifies someone from wanting to look good.
I just had a call from Adilzhan who has sunk into depression again. Although we were supposed to be meeting this weekend, he tells me that he doesn’t want to see anyone or do anything. I spent over an hour on the phone with him talking about his issues, which seem to be a complicated mix of being snubbed by a potential girlfriend, not being able to complete his school education and not being able to find a stable income (he told me that he wants to fulfil his mother’s dream of having a profession and living in a place of his own). I have been able to calm him down and try to see things in a rational light, but I’ll give it a rest for a while and hope that he bounces back out of it. Maybe I have enough material, but I really do need to record his voice and opinions!
I had arranged with Yernar to interview him at the day centre, since with a newborn baby in the apartment I didn’t think there’d be much chance of getting a peaceful environment in which to record. However, on the day that we were supposed to meet, there was a problem with the InvaTaxi service he had booked, and he was unable to get to the centre. Off the cuff, I asked him if it’d be alright if I came to his place to record the interview. After consulting with his wife, he called me back and said it’d be ok if I came right over, so I threw all my equipment in a bag and rushed over to his place as quickly as I could.
I always approach a domestic situation with some trepidation, since I don’t want to seem intrusive or overstay my welcome as it were. As such, I didn’t begin shooting as soon as the door was opened, but came in and sat down, leaving my gear in the other room. Once we had chatted a little, I asked if it would be ok to start shooting some things of interest, and he told me to ask Adepa, who said it was fine as long as neither she nor the newborn appeared in the pictures. So I ran and got my camera and started…
Yernar was working at his computer and having a spot of lunch at the same time. As I was shooting, his daughter and son kept coming and interrupting him for different reasons:
The computer is set up in the kitchen, so we could continue shooting while Adepa retired to the living room with the youngest child.
Yernar with his adorable children, who couldn’t resist getting in the photos as soon as they saw me with a camera! I took a whole bunch of portraits of Yernar’s children that I’ll give him, but since they are not going to be used in the project I didn’t post them here.
We had fun cooking sausages in the microwave! We decided to set up for the interview in the kitchen, so as not to be disturbed, so I shot off a couple of frames to see how the video would look:
I like the idea of the kitchen for two reasons. The first is that it is a real location of domesticity and shows the normalcy of Yernar’s lifestyle. There is nothing out of the ordinary here, and things like the photographs and magnets on the fridge add to the air of normalcy. The second reason is that in the Soviet Union, the kitchen was traditionally the place where people would talk about serious matters, like politics, philosophy, the arts and so on. The significance of a ‘kitchen conversation’ will not be lost on a local audience, while the lack of exotic surroundings will allow an international audience to focus on what Yernar has to say.
We recorded for about 45 minutes, and I used both video and sound recording to be sure I had a backup. In the event, I needed to re-record two of Yernar’s answers, but we managed to do that at the day centre at a later date. We spoke about his study, his profession, the importance of work, how he met Adepa and the importance of family, what he does in his free time, and we also recorded a personal message.
After we had finished, Yernar had to change Alan’s nappy, and I shot a sequence (taking care to respect Alan’s dignity by not showing any nudity) that shows how Yernar is a capable parent as well as a loving one.
Probably the last one in the series is the best but it would need to be combined with one of the others to make it clear what Yernar is doing!
After that, Amina wanted some help doing her homework:
Here I think the second image works best, since it contains enough narrative detail for the viewer to understand what is happening.
The images from this series that I am considering using are as follows:
This is a really nice portrait of Yernar with his daughter, and her tactile embrace shows how much she loves her father.
I wanted to get a shot of the fridge, but when Amina started showing me some of the images and explaining what was going on in them, I knew I had a great shot.
This is the best shot from the nappy changing series, in my opinion. Both father and son are laughing and they are also making eye contact.
This is the most successful shot from the homework series; Amina is asking her father about something and he is considering his answer. The message here is not only that Yernar spends quality time with his children, but also that he realises the importance of education from his own experience.
This is a great portrait of Yernar, and really captures the essence of his character. I am thinking of using it as the opening shot.
Yernar had told me that he was planning to get his hair cut, and though it would make for some good material and he’d call me when he planned to get it done. I was doubtful that I’d have the chance, but a last-minute cancellation meant that I was able to meet up with him.
It turned out that this hairdressing salon was near to where Yernar had used to live, but the people there remembered him even though he hadn’t been there in over four years! I told him that we’d better make sure first of all that it’s ok to shoot, so we asked the hairdresser, who was a little cagey to begin with, but soon relaxed when I told her that she was not the main focus of attention, and even showed her a couple of shots on the back of the camera to restore her confidence. In the end she proved to be very kind and supportive, and refused to take any money from Yernar for her services.
It was quite difficult to get a shot that included the rest of the salon while showing Yernar (since he was seated lower than the other clients) and avoid including myself in the reflection in the mirror!
From this series, I’m looking at using either image 9 or 11.
Yernar sporting his Clark Gable look:
I’m not sure whether I’ll end up using any of these images, but it was nice to spend some time bonding with Yernar, plus it was at his own initiative to arrange the shoot. It kind of fits in with what Howard Becker said about the work of Douglas Harper, who photographed hobos shaving:
“the photograph of a man shaving needs to be seen in context, as Harper points out, as evidence that refutes the common notion that these men are bums who don’t take care of themselves and don’t share conventional standards of decorum” (Becker 1995, p 11)
It also works in the same way that Dinara shopping for clothes works to challenge stereotypes that disabled people needn’t bother with how they look (see Cat Smith, Dazed Digital article).
Amanat is currently studying at KIMEP, which is one of the nation’s top universities, delivering most of the subject seminars in English. He is also married with 2 children. Since he is no stranger to being filmed or photographed for documentaries, I found Amanat amenable to my project, not least of all since he’d have some final say over the images used and the content of the interview material – as he pointed out to me, most journalists tend to focus on the fact that he has an able-bodied wife and children, so being given the opportunity to effectively write his own script was something he viewed very positively.
We agreed that we’d focus more on Amanat’s education – as such we’d be shooting on campus at the university, and for that we’d need permission – which was surprisingly easier to get than I had assumed!
Although some of the areas are wheelchair friendly, with ramps and wide doorways, not all of the rooms are accessible and so we enlisted the help of some of the other students when required. I don’t want to show the university campus as being restrictive, and I am also not trying to show that people who use wheelchairs can get by without any help at all (I have looked at Judith Butler’s discussion of interdependency elsewhere).
On the day we had arranged to meet, Amanat’s lecture was cancelled, but we decided to use the time productively and shoot some images where he is negotiating the university building. First of all we did some shots in the corridors and lift:
The next place we visited was the refectory, where Amanat bumped into some classmates and they started gossiping about the lecturers! What I like about these images is that they are relaxed, and Amanat is included – since the others are sitting down he is on the same level as well. In many of the images I have tried not to place emphasis on the wheelchair, as in these pictures, you really have to look closely before you notice that Amanat is in one.
On the way out of the canteen we stopped off to chat to some students who were selling tickets to an upcoming student concert.
I like the interactive aspect, and the guy with the guitar brings the whole student atmosphere, but I’m not totally happy with the composition somehow – it almost looks staged.
At this point we engaged the assistance of some students to help us access another part of the university. As I mentioned, some parts are accessible with ramps, while others are not:
Then we visited the student recreation centre, where some of the lads were playing table football, and Amanat decided to challenge the winner:
Some of the other areas we visited – not sure if I’ll use these images, but at least the one on the left shows that Amanat is able to use the top-up terminal for his mobile!
Then he asked me to take a picture as he is entering the university, with the name of the building clear in the background.
This image works well, since it shows that Amanat is able to access the building, as well as the cash machine being of a height that he is able to use it. The final place we visited was the computer room, where Amanat began working on a presentation that he had to make. I tried out a couple of angles and then left him to it.
All in all, a productive day’s shooting. I am particularly happy with the images where Amanat is interacting with the other students – it is one thing to be accepted into an educational establishment or workplace, it is quite another thing for the others in that environment not to be prejudiced, as I have been reading (Hyde, 1996).
On this particular day, Amanat and his group mates were scheduled to make a presentation, and he thought it would be interesting for me to attend, so we agreed with his lecturer and all was settled. When I arrived, Amanat and his group mates were in the computer room doing some last minute preparations.
I took the chance to set up my camera, since I knew the room they would be presenting in was facing in the same direction and would have sunlight streaming through the windows, so I was able to experiment with exposure compensation and see what values worked best with ISO values up around 1000-2000, aperture f4.
Not sure which of these images I will eventually use, probably the ones where Amanat looks serious and studious, and where there is clear interaction with the other students (between 3, 5, 8, 12).
During the presentation itself I was filming, although Amanat was extremely nervous and I’m not sure we’ll use the footage as he was hesitating rather a lot since he was presenting in English. Each group member presented a short section and then the group leader took over!
Once the group had finished, they sat back down and another group presented. I took shots of Amanat as he listened.
Again, the most important thing for me here is that he is included by the other students and they are interacting naturally. After the lecture had finished we went to the canteen so Amanat could grab some food to take away. He gets food subsidised by the university.
After that we went to the metro station with the intention of getting a train, but in the meantime his wife Meruert called and said she was going to pick him up – so we decided to do the public transport scenario another time.
Amanat is very open to to being filmed, but he does have a tendency to get embarrassed in front of the camera, and this shows in his body language. Not much I can do about that really. The best shots are the ones where he is interacting naturally with the other students:
Amanat lives on campus during the week, since that way he gets peace and quiet – enough to be able to do his homework. I thought it would be a good idea to show him cramming into the night with his roommate, Rakhman. We’re not sure whether we’re going to use these images, since Amanat isn’t sure that he wants to show he’s living in a dorm when he has a wife and children in another part of town! Anyway, we decided to go ahead with the shoot and then decide afterwards.
After we had done a few shots in the dorm, we went down to the computer room. The idea was to show Amanat cramming before his finals, with support from Rakhman.
Afterwards we all took the metro. I wasn’t sure whether or not I’d be allowed to take pictures, but I just went ahead and waited until someone told me not to. Sure enough, in the ticket hall I was told that it’s forbidden to take pictures, but everywhere else on the system was fine.
There is a wheelchair service, but as a rule it takes a very long time to get anyone to respond. Amanat thinks this is because nobody really knows whose responsibility it is. Eventually an attendant came to help us out. I asked if he minded whether I took his photo and he was also very forthcoming. Since this is the metro stop nearest the university, Amanat uses it quite a lot, so the attendant knows him and was very friendly and helpful.
Then something quite unexpected happened – the duty police officer came to lend a hand! Since I’d already asked permission to shoot from the attendant, I just kept on at it – it surprised me that the police officer did not say something, but since there was no objection and it was quite clear what I was doing, I continued.
So Amanat had the honour of a police escort down the escalator!! The attendant helped us with the next few flights of steps, some of which are equipped with chair lifts, some of them not.
The attendant was extremely helpful, accompanying us right onto the platform. Then after he had taken his leave, he returned again to see if Amanat needed a hand onto the train! I think he was enjoying the celebrity status, to be honest, buit it does make for some wonderful images:
Amanat had arranged for his children to be brought to the platform, but this was where I was getting off. We said goodbye, and his children jumped on the train as the doors opened:
A really productive day’s shooting, with plenty of material to choose from. The shots I am considering using at the moment are the following:
This image captures the frustration of cramming before exams; Amanat’s wheelchair cannot really be seen at all, and this underlines the fact that all students are in the same boat when it comes to exams!
I have to include one of the images with the police escort!! This one is probably the best for me, where Amanat is being delivered into the hands of the law enforcement officer!
Amanat being helped onto the train reminds us that we all need the assistance of others to do things, simple or otherwise.
Amanat reunited with his children – this is the first time I’ve met them, and hopefully will get some more shots with them (although we have agreed that the focus will not only be on Amanat’s normal family, a freak show aspect my reading has also confirmed).