This topic contains 3 replies, has 2 voices, and was last updated by  Brittany Foster 8 months, 4 weeks ago.

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  • #15297
     Kathleen Sheffer 
    Participant

    This is kind of random, and might be a stretch, but…earlier today, a disability arts page I follow shared about Sophie de Oliveira Barata’s Alternative Limb Project. De Oliveira Barata designs custom prosthetics for amputees, and the art pieces are striking (10 images shown here).

    One of her clients is Viktoria Modesta, who The Guardian names the world’s first amputee pop star. Read a quote from Modesta below:

    “I’ve been asked if I feel I represent disability, and I don’t think I do,” she says. “I represent the feeling that you have a choice to create your own identity. It is more than just coming out as the first amputee music fashion artist, whatever you want to call it. It’s about taking charge of your own assets. If you don’t fit in, then don’t fit in.”

    This is what I love about De Oliveira Barata’s work: she helps her clients decide how they present their bodies to the world. Rather than conceal their prosthetics, they draw attention to them in creative ways. I’ve seen @brittany-foster do the same with her oxygen tank. She decorates the e-tank and cart to coordinate with her outfits for special events (one example here). In the same way that these amputees have done, Brittany acknowledges her supplemental oxygen and controls how she relates to it.

    When I started painting and drawing my infusion pump, as I wrote about in this column post, I came closer to accepting it. My disease and my treatment made me different. I used that to make art that helped me heal (and got me an A in the course).

    What aspects of your disease are you struggling to accept? Do you have perceived (but not necessarily real) flaws you wish to conceal?

    Have you tried any creative projects like those mentioned above? How do you work toward acknowledging the challenges you face?

     

  • #15311
     Brittany Foster 
    Keymaster

    Hi @kathleen-sheffer ,
    This is an awesome topic. One way that I have really been accepting and starting to embrace everything that makes me ME now is by decorating my tanks. It is a creative way to have some “fun” with it. I love the reactions that i get from people with it and they make comments like “i love your attitude!” These comments and positive feedback from others is what keeps me going. You never know who you could be inspiring. Even while at the ACHD conference when i wore my oxygen with confidence (even if it was forced confidence) , a woman came up to me and said “I actually have oxygen in my room but I was too embarased to wear it, but you are rocking it and I’m going to get it from my room “. That stuck with me. You truly never know what someone is trying to hide. Even if you have to “fake confidence” for a little bit, it eventually will become easier especially when others respond so well to it and start to look up to you for it.

    • #15312
       Kathleen Sheffer 
      Participant

      Oh my goodness @brittany-foster that is seriously incredible that you encouraged someone to wear oxygen! Whenever I’m feeling self-conscious about wearing a mask I try to think that I might be making it easier for another patient to wear a mask in public in the future. It’s easier when you’re not the only one. I love rocking N99 masks with @brad-dell: when we are together, we look like total trend-setters (or bank robbers…take your pick)!

      • #15336
         Brittany Foster 
        Keymaster

        I like the bank robber vibe ! They would never afford our health care needs in prison hahahaha!! But you’re so right, having friends who are wearing this right along with you makes it a lot easier. Honestly, the most confident I felt was when I was at the ACHD conference and saw others with it on (even the ones who kept it in their bedroom made me feel less alone).

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