IRMÁ

It’s hot and the bedroom window is open. The sound of gulls nesting on the roof reminds me that I’m home.

Childhood memories pop into my head, when we played at her being my model and me her photographer.

Years later, I watch her again and the glass of the lens filters reality.

As she looks at me closely, the playful light drawing planets on her face.

I touch her nose with my index finger slowly, intermittently. That is my way of hypnotising her and she lets me.

I cannot help but wonder what the world she lives in is like and whether she’s also frightened.  

 

 

Sara had Cri du Chat syndrome, a rare congenital disease involving chromosomal abnormality caused by a terminal or interstitial autosomal deletion of the short arm of chromosome 5, which has an estimated incidence of 1 in 20-50,000 births

And I am her sister. 

I started photographing her when we were kids. It was our favourite game. It brought us closer and helped us to connect with each other. Something that would otherwise have been impossible. 

More than 20 years later, we continue playing and IRMÁ has become an on-going project, an act of exploring and discovering which, even though it started many years ago, has now taken on a rather more serious and structured form, a more conscious determination than was present in those childish photos that amused us so much when we were children. It will continue to be the tool with which I contemplate my sister, in a studied and intentional manner, seeking to learn more about her and her world. So this is a project of and for life.