I had already met Dinara when I was shooting an assignment for the ARDI disability centre and she was present. Nevertheless, as always in the initial stages of a new project, I agreed to meet with the subjects and discuss the rationale and content of the photographs. I met Dinara and her mother, Bibigul, at their home – without my camera, just a notebook and pencil. Dinara, who has cerebral palsy and limited use of her arms, had warmed to me immediately on our first meeting, and her mother understands the need for stories like Dinara’s to be disseminated since she also works at the disability centre (Dinara now works full time from home while her mother commutes each day to the disability centre to help with administration). Once I had explained the purpose and goal of the project, we discussed the approach, and agreed on a number of items – that all of the material that I would ultimately show would first have been approved by the family, and that there would be no ‘filming’ of interviews, since Dinara does not like the way her face contorts when she speaks and Bibigul is conscious of her Russian language (her first language is Kazakh).
Bibigul explained the cause of Dinara’s condition to be the result of their differing blood types – she is Rh- and Dinara Rh+. She told me that Dinara’s skin was yellow when she was born, but that since this was the first time she was having a baby she assumed it was normal (the medical professionals had not remarked on this fact or taken any measures). This fact was news to me, since I had always thought of CP as being caused by physical damage (asphyxia, stroke or haemorrhaging) or infections during pregnancy. Since I want the facts to be accurate, I looked up CP and found, sure enough, that jaundice is cited as one of the causes. In fact, the yellow appearance should have alarmed the doctors to the possibility of jaundice, which although reasonably common among newborns, if left untreated for too long can result in kernicterus and ultimately CP. Although the medical services were clearly at fault for their lack of precautionary measures, I did not detect any bitterness towards them from either Bibigul or Dinara (perhaps a result of resignation or fatigue?). If the production of this short film can at least help some mothers to be informed that jaundice in a newborn is something that needs to be treated immediately, then it has achieved a major goal. From the CDC website:
Jaundice is the yellow color seen in the skin of many newborns. Jaundice happens when a chemical called bilirubin builds up in the baby’s blood. When too much bilirubin builds up in a new baby’s body, the skin and whites of the eyes might look yellow. This yellow coloring is called jaundice. When severe jaundice goes untreated for too long, it can cause a condition called kernicterus. This can cause CP and other conditions. Sometimes, kernicterus results from ABO or Rh blood type difference between the mother and baby. This causes the red blood cells in the baby to break down too fast, resulting in severe jaundice.
If there is a difference in the blood type or Rh incompatibility between mother and baby it can cause Jaundice and kernicterus. Women should know their blood type and talk to their doctor about ways to prevent problems. Doctors can treat the mother with Rh immune globulin (“Rhogam”) when she is 28 weeks pregnant and again shortly after giving birth to prevent kernicterus from occurring.
Any baby can get jaundice. Severe jaundice that is not treated can cause brain damage, called kernicterus. Kernicterus is a cause of CP that potentially can be prevented. Your baby should be checked for jaundice in the hospital and again within 48 hours after leaving the hospital. Ask your doctor or nurse about a jaundice bilirubin test. In addition, steps can be taken to prevent kernicterus that is caused by Rh blood type incompatibility between the mother and baby.
Possibly, had Bibigul had access to such information, Dinara might not have developed CP. Should this be an element of my work on Dinara? Somehow raising awareness/empowering mothers by supplying them with knowledge that they may then confront their doctors with, following from the example of Jo Spence and her lack of knowledge or empowerment at the hands of the NHS medical professionals? I think I’d have to ask Bibigul if she’s ok with that aspect being made salient in the project, since it somehow apportions blame or accountability as well as ignorance – hers or the doctors’.
Speaking to Dinara, I asked her to tell me about her work. She works from home using the internet, recruiting staff for a local investment bank. She told me that it is important for her to be working, earning a salary and contributing to the family budget. Bibigul told me than Dinara found the job by herself. Dinara told me about a recent film production she has been involved in, a romantic tale of a girl who had never seen the sea and dreamed of doing so. Filming took place in Turkey, and Dinara and Bibigul travelled to Anatolia this summer to film. Perhaps I should get some images from that trip and add them to the project.