in my dreams i'm a butterfly

Uploaded 1 Sep 2011 — 33 favorites
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© niko niko
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Photo Info
UploadedSeptember 1, 2011
TakenAugust 26, 2011
MakeNikon Corporation
ModelNIKON D200
Exposure1/80 sec at f/3.5
FlashNo Flash
Focal Length50 mm
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Photo license: © All rights reserved

i met melanie last week. she's originally from CT, but now lives in bushwick, brooklyn. she was born with a genetic birth defect known as ectodermal dysplasia. it's a terrible syndrome whose many symptoms include no body hair (eyelashes, eyebrows, etc) and a lack of sweat glands. there are many other symptoms associated with ectodermal dysplasia and they make living a 'normal' life very difficult.

melanie has overcome her birth defect and is attempting to live as much a normal life as possible. she lives on her own and has enrolled in art school as a fine artist. although we may see people with disabilities every day, actually getting to know one is a life changer. i grew up with a double amputee father who was one the strongest people i've ever known. he never let his disability get him down (even though it took his life at 42 years old).

having met melanie, i was reminded of how attached we are to petty things in life. how we let completely insignificant events get us down. why do we get angry at traffic, at delayed trains, at long lines? even our insecurities that may have no basis in anything but our thought patterns are miniscule when compared to people like melanie who have real and sometimes even painful reasons to really be down. for me at least, she's beacon of light in a sometimes dark world - and i'll reconsider how i let external conditions affect me in the future. just sayin'…

more images from our shoot to come.

19 responses

  • Donovan Ramirez

    Donovan Ramirez said (1 Sep 2011):

    really nice work, the story of the girl is sad, but thats exactly what makes this picture awesome. "ugly" things tends to create BEAUTIFUL ART... again well done

  • niko niko

    niko niko said (2 Sep 2011):

    thank you very much.

  • Simona Ranieri

    Simona Ranieri gave props (2 Sep 2011):

    love the way you remind the story...made me feel it!

  • Jean Vaillancourt

    Jean Vaillancourt gave props (2 Sep 2011):

    Very beautiful photo, especially after reading your text. I'm myself one-handed, I know how it is being watched by everyone. But I also know that nothing can stop us :-)

  • Joerg Schlagheck

    Joerg Schlagheck gave props (4 Sep 2011):

    The photo caught my eye because I thought it was a bit on the weird side and, to be honest, I like exploring that. Having read your text I have a different perception and it makes me appreciate the image a lot more.

  • Rob Linsalata

    Rob Linsalata gave props (10 Sep 2011):

    A wonderful photo and a moving story behind it.

  • John Shanahan

    John Shanahan   said (12 Sep 2011):

    Excellent presentation

  • dL

    dL (Deleted) gave props (18 Sep 2011):

    Beautiful through and through

  • niko niko

    niko niko said (19 Sep 2011):

    thank you everyone!

  • Mike Whonder

    Mike Whonder said (24 Sep 2011):

    I admire Melanie's bravery to share and reveal herself outwardly and openly, as opposed to our societal convention of concealing our physical differences, or anything perceived as "not normal". Beautiful model; excellent piece! Thank you for sharing.

  • Mato P

    Mato P gave props (26 Sep 2011):

    this is a great photo and such a true story. thanks

  • Lavinia Grama

    Lavinia Grama gave props (16 Nov 2011):

    Congratulations for this project, is a good reason to meditate on life and to open the eyes in front of her, so that we can be able to see the truly important things!

  • T ~

    T ~ gave props (28 Feb 2012):

    She's an inspiration... as are your photos. They definitely do her great justice!

  • Gina Plaitakis

    Gina Plaitakis gave props (12 Apr 2012):

    Beautiful and thought provoking

  • Julianna O'Brien

    Julianna O'Brien said (13 Apr 2012):

    she is beautiful.

  • Michael Fitzgerald

    Michael Fitzgerald gave props (5 May 2012):

    I'm in awe! I keep coming back to view this photo. Well done!

  • Pedro Sanchez

    Pedro Sanchez gave props (1 Jun 2012):

    excellent picture and caption... Beautiful

  • Marco

    Marco gave props (6 Sep 2012):

    Beautiful shot

  • M ice

    M ice said (28 May 2014):

    This photo caught my eye, I knew there was a story behind it but now I know what her story is. I think she is beautiful! How wonderful that she felt confident enough to take the photo!

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