The search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.

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10 Responses to “The search for understanding from a disability perspective.”

  1. treadmarkz December 5, 2012 at 1:49 pm #

    I think anyone with issues and background like ours (I have spinabifida) will always feel there is never anyone who has went through what we have. And we are right. We just have to understand that everyone’s experience is different, but everyone goes through pain. Takes away a little bit of the further pain of “why me?”

    • ameliaclaire92 December 5, 2012 at 1:53 pm #

      Very true. It’s really important to remember that everyone does go through pain, even if it may not necessarily mirror the pain that we’ve been through.

  2. Sara December 5, 2012 at 2:18 pm #

    You have a high calling, and the ability to help a lot of people. Because of what you’ve gone through you have an understanding that few other people have. That’s a pretty great blessing in its own way.

  3. yogikarenk December 5, 2012 at 5:34 pm #

    Only you are experiencing your experience. What we all truly need is someone who can be with us in our pain. “Be” as in being there, sharing it, not trying to fix, change or even talk about. Being with.

    • yogikarenk December 5, 2012 at 5:37 pm #

      Typing on my phone today, didn’t finish… Just sayin’. Hey I’m here with you. 🙂

    • ameliaclaire92 December 5, 2012 at 5:37 pm #

      Though I have come across a few people who are able to simply “be” with me, they are normally few and far between. However, the fact that I’ve had a few is special in itself. Not many people truly understand the power of simple presence.

  4. Julia Dean-Richards December 5, 2012 at 5:37 pm #

    Dear Amelia

    When life threw a few bricks at me a while back, I spent some time working with an artist friend of mine, who helped me by being the person I could rant and swear with. I learned I didn’t have to be ‘nice’ when I didn’t feel nice at all. Nice is so energy sapping, and we all only have so much energy. I’m leaving you a link to one of her blogs; she’s my local hero, who, when I said I wanted to do something, told me to “Just Do It!” which I did!

    http://revealingcultureheadon.wordpress.com/about/

    With love
    Julia x

    • ameliaclaire92 December 5, 2012 at 5:38 pm #

      Thank you so much, Julia. I really appreciate you sharing the link with me. 🙂

  5. Katie December 11, 2012 at 8:04 am #

    Hi Amelia,
    I think this is another great post., It is such an important distinction between someone who wants to understand and someone who does understand. For me, I find it difficult to take criticism from someone unless they have been through what I have. Eventually I come round and realise that people can advise me even if they haven’t been through what I have, but still my initial reactions is that they don’t know what it’s like.

    Like you, I appreciated the sympathy I got from my close loved ones but seeked someone who could understand on a much deeper level. I found this when I became a Christian. I realised that God can not only understand everything I have been and am going through, but also is right there with me, experiencing the whole thing too. Some would see this as an emotional crutch, and they’re right to a certain extent. Of course, my relationship with God is very comforting, especially when I am going through a hard time, but He also challenges me to keep pushing ahead. At times my family have got it wrong, either been too soft with me, or too hard with me, but He always gets it right.

    Love Katie x

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