Irina was born with severe scoliosis and has physical developmental disability. At the moment I met with her and her parents, I was coming from the angle of people overcoming their diagnoses. At that time, Irina’s father Igor told me that they had been correctly informed about Irina’s condition and what to expect. He also understood that a project such as mine could change direction and focus, and expressed willingness to remain in contact in the event that Irina’s case could be of use in the future. Since my focus has now changed from ‘overcoming diagnoses’ to ‘living normally with disability’ they may yet receive a call from me.
They call him Matisse. Medet has a wonderfully warm personality and is extremely kind and gentle. He loves painting and never seems to tire of it. Although there is no conclusive evidence, it seems that force was applied to Medet’s mother’s abdomen as she was giving birth, which probably resulted in his CP.
I met Medet and his mother at their home and we discussed the project, but it became apparent that he is not able to be self sufficient, and this is an issue for his mother. Medet told me that he would like to go to work, but the severity of his disability means that it is difficult for him to make himself understood verbally, and although he can cope with small errands such as shopping, more often than not he needs to be given a list of items that he simply hands over. Much as I want to include him in the project, I don’t think that his case can be used to challenge stereotypes in the way I would like. I may visit him and take a series of photos that I can give him and his mother, since I don’t want to drop them cold. I don’t know. This is difficult for me, since he is so keen to be involved.
Vasya lives with his mum in a district of the city that is close to the railway station. He is a swimming champion, and has travelled to Ireland to participate in the Special Olympic Games. I have met him on several occasions, and have been struck by his contagious sense of humour. His mother Olga told me that he has got into trouble since he appears normal, but once approached and confronted, for example by the police, he is unable to respond adequately to situations. He agreed to take part in the project, and we discussed a number of things that could be included, such as his swimming practice, going to football matches, working around the home, as well as his relationship with Bota, a deaf-mute. Apart from logistic challenges (Vasya lives quite a long way from my home) the biggest obstacle I can foresee is communication. Since Vasya is oligophrenic, he can communicate with some clarity about concrete things, but with more abstract concepts such as time, he becomes confused. As such, all communication and arrangements will have to be done through his mother, and I’m not sure that she completely understands the project. At the moment I am playing it by ear. I will try to start with a swimming session or football match, and if it works out then we’ll push on. Otherwise I may not pursue this subject. (Nixon’s words ‘Life’s too short’ come to mind, but I’m thinking more about my project timeline than life expectancy!)
Askar & Malika Musayev
When I first met Askar and Malika, they were inseparable. Within a few months of this picture being taken, they got married. Askar is oligophrenic and Malika has dysplasia of the spine and is cognitively impaired. They both attend ARDI from Monday to Friday, and are actively involved in all extracurricular events. They spend their time between Askar’s parents and Malika’s grandmother (her mother has not been actively involved in her life for several years, and was vehemently against their union). I have met all the guardians, and we have agreed about participation, but my concern at the moment is with the content and the overall message.
On the first visit, Askar and Malika wanted to show me how they passed the time, since neither of them actually works. They were adamant that, although they still attend the centre, they did not want to be photographed there. I’m not sure why this is, but can only assume it is out of some sense of pride in their autonomy.
On the other hand, by showing these disabled people engaged in embroidery the whole time, am I not simply creating another stereotype? Although it may be therapeutic, and of course they can sell the finished items, this is not really an occupation, more of a hobby. I asked them what else they wanted to show me, and they promised to think about it. I get the feeling that they are not as self-sufficient as I was led to believe. Initially I was accepted extremely cordially by Askar’s parents, but had the feeling that something was amiss. Apparently Malika ran away from her overbearing mother who does not agree with the marriage.
I invited them to do something domestic, just for the camera, and they said they’d cook something up for me. We decided to go shopping and then cook something. The first few stores we visited would not allow me to shoot, even though we went through the correct channels asking the administrative staff and the managers. I suggested we try smaller shops, and the salespeople were more forthcoming.
After the shopping excursion we returned home, and Askar began peeling the potatoes.
When the cooking began, Malika took over.
When we sat down to eat, although Askar’s mother asked not to be included in the frame, her presence is conveyed by the table layout and the attitudes of Askar and Malika. There was a lot going on that I could not fathom.
During the third visit, where we began discussing future plans and ambitions, all became apparent to me and a spanner was thrown into the works. Askar became self-conscious in front of the camera and refused to speak. Malika described in great detail how she had run away from her mother, but as soon as I mentioned the current living arrangements she clammed up. As I understood from our first interviews, the couple want to have children, but it seems as though the people supporting them are not in full agreement with that. Indeed, I was taken aside and asked my opinion on the matter. I did not see any reason for letting the couple get married if they were not allowed to follow through and have children. The very point of this project is to try and question or challenge such stereotypes, and without the full support of the parents, holding up Askar and Malika as examples of disabled people that can actually pull through against the odds and lead autonomous lives of their own would be a pointless and fraudulent exercise. I don’t know what the rationale was behind consenting to let them get married if they are to be denied the possibility of having children. It is not my place to judge whether or not they are capable of bringing up a family, and was being forced into a position that I could not hold. It is not my aim to judge or to justify, but to report on an issue that I feel needs airing. If the parents themselves cannot accept accountability, or allow their children to accept responsibility, it undermines the very point I am trying to make.
Being asked whether or not I think it is a good idea for ‘such a couple’ to have children was the last straw. Although I have spoken about this with other disabled parents and disabled persons, who have tried to assure me that the decision at the end of the day lies with the couple, I fear in fact it does not, and don’t want to go down that path. I have given them all their photos on a disc and thanked them for participating. We still see each other at the centre and they have featured in the photographs of some of the other participants, notably Adilzhan.