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Thread: Getting out the message about Scoliosis through art

  1. #1
    Join Date
    Sep 2003
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    19

    Getting out the message about Scoliosis through art

    Hello all, I have posted in these forums numerous times before, but I just received an epiphany for an art/photo project. I am a senior in college studying photography, and as a human I always wonder why I was created the way I was.....with scoliosis. Ever since joining this forum I have felt some sense of ease knowing that there are other people out there w/ the same or similar problems, as well as first timers or people who know really nothing about scoliosis. So, for my senior photo project next year, I was thinking ahead. I was thinking of combining my scoliosis experience w/ my art and making a book. I'd want to photograph people w/ scoliosis (those who are comfortable w/ it) and then have them write down their personal thoughts either about the photo and/or their experience in living w/ scoliosis. I would print the photos and then place the person's handwritten piece below it...or have them write directly on the photo. If people wanted to include x-rays, I could shrink them down somehow and re-print them. I would put all of this into a handmade book I would create (because I also know how to make paper =) I feel that this project would be meaningful to me as well as inform those who know nothing about the deformity. I feel that those who participated would also receive some sort of fulfillment. Let me know what everyone thinks! I'd have to find people in my area to photograph (SF Bay Area, CA) but we will see. I'm also thinking of doing my own personal project involving my x-rays and photographs. Thanks for reading and if anyone has any suggestions or input that'd be great! Have a beautiful day!!!

    -Julie

  2. #2
    Join Date
    May 2004
    Location
    PA
    Posts
    16
    Hi Julie,
    Good Idea, as for me, I'm no where close to you so I wouldn't be able to help out.
    In response to your other post, I definetely wish every single day that I was "normal". Even if I'm not thinking about it and I see someone who is outside gardening or in a store shoping pushing a cart, it makes me think of how I wish I could do that and why do I have to live like this.
    With my original fusion didn't stop me from doing that stuff initially. It is now that I have problems below my fusion, limited mobility and pain that keeps me from living a somewhat normal life. But as for your thoughts on that, I have just been trying to learn to live with the fact that I was a chosen one to live with this disease.
    What levels do you have fused?

    Christina
    28 years old. Fusion for Scoliosis at age 17 from T1 to L1 area with Harrington Rods. Surgery in Sept 2003 for degeneration of discs and bone spurring of the facet joints. (Been dealing with the pain and immobility for almost 4 years.) Found out now that the spurring is back and there is more of it along with disc bulging. Going to NYC on 6-17 to see revision doctor. Probably will be having fusion extended to S1.

  3. #3
    Join Date
    Sep 2003
    Posts
    19
    Thanks Mistina, for you post. =) I am not sure about the measurements of my surgery. I'll have to check them out again. I just finished looking at my x-rays but I don't uderstand them that well. It's so weird...I have the x-rays of my little back when i was 8 years old, then one w/ me wearing a brace, and then after the rods were put in. I'm sorry about the pain you have due to this disease. I too look at people with "normal" backs and kinda wonder what other people see when they see me....although my friend said it's not THAT noticeable. I can just feel how twisted my body is though. Anyways, if anyone WOULD like to be a part of my project i discussed in my above post, let me know. It would help if you were going to be in the Bay Area sometime this summer. Thanks again! I'm hoping to develop this into something really special!

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Julie...

    While I'm in the SF area, I'm pretty photo shy. You might consider asking your doctor if you could post something about your project in their office.

    --Linda

  5. #5
    Join Date
    Apr 2004
    Posts
    30

    senior project

    Hi, I am new to this website and scoliosis (I just found out in Jan.)
    I am 26T and 38L. I live in the central valley but my mom and dad are from Fremont. My mom said it would be ok to help you with your project. My back does not look too bad yet! But I am really uneven in the hips. I am still growing so who knows what it will look like in the summer.

    Keep us posted on your project, it sounds like fun.

  6. #6
    Join Date
    Sep 2003
    Posts
    19
    Thanks Ellie, Linda, and Mistina for your expressed interest in my project. =) I won't be able to start on it until probably June b/c of FINALS and a vacation I have planned. But I plan to gather as much "data" as I can (including pictures, x-rays, comments, etc.) this summer..hopefully. Ellie, that would be cool if you could help me out. =) And yes, Linda, maybe I could post something up in a doctor's office/waiting room. I'd have to find one first. I'll keep you posted. Have a good day everyone!

  7. #7
    Join Date
    Apr 2004
    Location
    Sausalito, CA
    Posts
    2
    Julie:
    I live in Sausalito and would be happy to participate in your project, which I think sounds really interesting. Feel free to contact me via an email reply, or whenever you get your project going.

    By the way, quite some time ago now (one year, perhaps two), there was a fairly extensive article in the SF Chronicle about a young woman with scoliosis. She is a painter and did a series of watercolors, I believe, which expressed her feelings about her situation. They were quite graphic and very powerful. I remember going to her website and seeing the pictures online, but unfortunately don't remember her name. You might try to search the Chronicle archives or even a google search on the web. She might be very inspiring and/or offer you some insight on the type of project that would be the most powerful.

    Best of luck.
    Cathy

  8. #8
    Join Date
    Sep 2003
    Posts
    19
    Wow, thank you so much for your open cooperation...I appreciate it. Also thanks for the info about the female painter...I will look her up now if I can find her. I will surely contact you sometime this summer if/when I get this project going. Thanks again!

  9. #9
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    Sep 2003
    Location
    Northern California
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  10. #10
    Join Date
    Sep 2003
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    19
    Linda, thank you so much for that article. It was wonderful to read. Nicole, the artist, and I are about the same age which is neat. I emailed someone at the SF Art Institute and asked them if they could get me in contact w/ her b/c I would really like to see her work and speak w/ her. Thanks again....I continue to ponder what medium I want this project to be in...I know I want photography, just not sure if I want straight photography or some sort of alternative process. Thanks again and be blessed!

    -Julie

  11. #11
    Join Date
    Dec 2003
    Location
    Maryland
    Posts
    18
    Hi Julie. I know that this is not exactly the same kind of project you have been thinking about, but you may be interested in checking it out. This weekend, I went to a special art exhibit/conference co-sponsored by The National Scoliosis Foundation and the National Museum of Health and Medicine in Washington DC. It featured a wonderful artist named Laura Ferguson. Laura is a scoliosis patient who uses her own body for inspiration. She uses her work to convey not only how she looks, but how she feels to be inhabitating her body. I found the exhibit educational, inspiring, and freeing. You may want to check out her website at www.lauraferguson.net and also to consider bringing a similar conference to your city. You could probably work with The National Scoliosis Foundation to make it happen, or contact the National Museum of Health and Medicine in Washington DC. They said they are interested in bringing this conference to other areas. The gathering was also a wonderful networking opportunity, and offered a chance to meet other scoliosis patients and discuss shared concerns in a safe, facilitated environment.
    Good luck,
    Bonnie

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