Monday, April 22, 2013

Challenge Yourself

Call out your peers for making assumptions based on abilities and disabilities. And most of all, be open to deep and meaningful relationships with people with disabilities. Give yourself the opportunity to have friendships that transcend social norms and do it for yourself and the world, not out of pity or saintliness.Let me say that again - not out of pity, saintliness, charity or community service hours.

via Sea Change Ripples
Read the rest here.  
When I read the above post on a stranger's blog, I was reminded of a friend who told me a story of a boy in her neighborhood whose mother asked whether her son could perhaps come over and play a little basketball with my friend's son who had Down Syndrome. My son needs to do some community service, the woman said. He still needs a few more hours. My friend knew that she was supposed to feel gratitude toward this woman and her son, but she didn't. I don't remember what she said, but it wasn't sure, send your son over who has known my son for all of his life but wouldn't spend time with him unless it earns him some hours which, to tell you the truth, makes me think he's a shallow boy with an even more superficial mother. She felt belittled and small and probably overcome by that weariness that sets in when you are reminded, again, of the long road ahead.

When I read the above post on that stranger's blog who is far more intimate with me now than even some of my closest friends for having articulated these shared thoughts and feelings, I wondered if I even had the stamina to do the calling out and to keep it up. I wondered if I'd live the rest of my days -- and Sophie's -- in the steady loneliness that is the result of constantly trying to persuade the world of her worth should it just take the opportunity to see.


  1. You know what just popped into my mind after reading this? The lyrics from "Amazing Grace." The ones, specifically which say, "I was blind but now I see."
    This is why I read blogs and why I read the blogs I read. You give me a window into a reality that I did not know of. Not really. And if I did, I was able to be blind to it. Not anymore, Elizabeth. Not any more. And my world is better and bigger because of that.

  2. I went to the blog and read the post, it was wonderful. I'm most comfortable with Katie at Special Olympics and at theraputic riding, she fits in at those places. She isn't weird, nobody cares if she drools or claps. I especially love being at Special Olympics bowling. Everybody there is themselves, there is no pretense, they are genuine people. How often can you say that?

    I want the world to accept Katie, as she is, to see her for how wonderful and complicated she is, to see past the drool and the hair pulling and to see her humanness.

    I get the loneliness you speak of. It's hard.

  3. There is an organization called L'Arche which is dedicated to the creation and growth of homes, programs, and support networks with people who have intellectual disabilities

    The mission of L'Arche, as defined by L'Arche International, is

    to make known the gifts of people with intellectual disabilities (or learning disabilities as they are known in the UK),
    to foster the development of communities that respond to members' changing needs, and
    to engage with local cultures while working toward a more human society.

    In pursuit of this mission, L'Arche strives

    to create small faith-based communities of friendship and mutuality between people who have disabilities and others;
    to develop lifelong support systems with people who have disabilities, especially with those who are extremely vulnerable due to old age and/or multiple disabilities; and
    to highlight the unique capacity of persons with disabilities to enrich relationships and to build communities where the values of compassion, inclusion and diversity are upheld and lived by each person.

  4. My life, my friendships, have changed dramatically since Zoey's birth. My circle is very small. And the closest relationships I have today, are honestly with those who walk in this world of disability with me. They get me. They get Zoey. They understand her magic. When I attend events with Zoey, like Special Olympics or programs at her school, it is where I am the most comfortable. I am with my people. I know my friends without children in this world love me, love her, but it is not the same as you all. It's just not.

    I will continue to try to enfold those on the outside, into the fold of this life, but they have to be open. I am sadly learning however, not everyone is ready. And may never me.

  5. i hope this blog, and its virtual community, help you feel somewhat less lonely, Elizabeth.

  6. i cannot fathom that anyone would question Sophie's worth, but sadly, i know it is so because of the way you have to fight for the care she deserves. you teach me, elizabeth. you and sophie teach us all.

  7. It stuns me to think that anyone might need convincing of Sophie's worth. And your friend's story of community service is an outrage.

  8. Community service sometimes makes me think of my brother's probation from juvenile hall years ago and how it involved community service. What a joke. I think you should stand up for Sophie whenever possible. If that ever happens to you, direct the kid back to the street where he could pick up litter and be truly useful.



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