Creative studio, blog 10: Ethics and consent

The one thing that I have tried to do along the course of this project is to do right by Katie and ethics and consent came in to play, Katie came to live with us when she was 2 years old, my parents are foster carers and took her on, little did we know she would become a big part of our life. Because Katie was not biologically my sister and she is not in touch with all her family members, this was one reason I did not want to use her face. The other reason was that Katie as well as Quadriplegic Cerebral Palsy has Microcephalicly which mean he brain is smaller and has a learning disability along side this, which mean she can not give full consent as she does not have the full understanding to do so; this to me was not the ethical thing to do. I would want the choice to show my face or not. The other part of this decision was me being a big sister and protecting her, I tried images with Katie’s face in but even though I loved the images it did not sit right with me and after discussing this with my mother and father we had come to the decision that the right decision was to keep her identity hidden.

Even though I wanted to hide Katie’s identity I also wanted to show the side of Katie that everybody loves, the infectious smile and laugher, Katie is very facially expressive and also very verbal, she may not have many words but she makes her self heard and uses the words she does have to get everybody attention. Everybody that meets Katie falls in love with her straight away by her smile and laughter, she lights up with room. Katie is very cheeky and always sticks her tongue out at you, and this is why I choose to use some of her facial features in this project but close up. As well as showing Katies facial expressions and her personality I also wanted to show the audience through these image that just because you have a disability does not mean you cannot be happy. I feel that it is a miss conception that people with disability have an hard life and you should feel sorry for them and I want to change this, yes Katie has a harder life then most but to her she knows no different and is extremely happy. Katie has lived with this since birth, knowing no different this is her ‘Normal’.