The Price of Change

I have two (or maybe three) very different lived experiences that put me, sometimes involuntarily, in a teaching position.  The situation becomes a teaching moment because I have made a commitment to be an agent of change around the topic.  I say that the moment is sometimes involuntary because there are lots of times I voluntarily teach, lecture, write or advocate for the change I desire.  Then there are other times, when I am tired or irritated and stressed, when the teaching moment arises and I have to choose to be true to my commitment to be an agent of change or just have a moment of petty humanity and tantrum. 

The first lived experience is grief.  As a child, I lost a parent.  As a young parent, I lost my first child.  By 29 I had experienced my share of grief and was disappointed in the social taboo of grief.  We could talk more openly about sex or drugs than we could talk about grief.  I desire to normalize both death as a part of the ongoing process of life and grief as the human response to losing what is precious.  This challenges me more in ordinary conversations than in times, like in this piece, when I choose to talk about advocating for normalcy.  Here my intent is clear and my path chosen.  When I talk about the poignancy of birthdays for children who never grow up, others experience discomfort which causes them to say the kinds of things that remind me why I want to normalize grief.  “But you have an angel in heaven.” “But you have other children you can celebrate.”  And now I am teaching.  Teaching that minimizing statements are not helpful and actually dishonor my grief.  Teaching that when I state facts and my emotions, you are not required to “make it better for me”.  You can just be present to my loss without needing to minimize it.  Feel your own feelings.  If I have given one other grieving parent permission to celebrate their child and acknowledge their grief, then the struggle I experience in those involuntary teaching moments is the price I pay for change.

The second lived experience may really be two separate, but overlapping, lived experiences: as a woman with a disability—and with dwarfism.  Some might consider that one experience but there are unique aspects to each.  My commitment is to advocate that each condition is truly an expression of spiritual and human wholeness.  Each person affected by disability and/or dwarfism is entitled to “life, liberty and the pursuit of happiness.”  We should have access to gainful employment to the extent of our abilities, quality healthcare, accommodations as needed in the workplace and in affordable housing.  We should not have our dreams limited by the low expectations of others.  So when I am weary and just need to get one more errand complete, the teaching moment of someone pointing and laughing, “Look, it’s a midget”, feels like a push over the edge of endurance.  I tend to be much more tolerant if there is a child involved.  “Is there something you’d like to ask me?”

I try to muster a peaceful reply when the initial volley is irritating.  “You are the smallest person I’ve ever seen.” “Is there a prize for that?” is often my reply with a gentle smile.   I try to stay open to dialog if the person isn’t rude or aggressive.  I try to stay centered in the truth I know about myself and be compassionate with those who remain stuck in the ignorance of years of portrayals of people with dwarfism as clowns, incompetent, childlike, and subhuman oddities.  My struggle in that moment is the price I pay for changing the world’s perceptions of people with dwarfism.

Interactions around dwarfism tend to focus on size.  Interactions around disability tend to lump me into a larger group of “people like you”.  Honestly, once you get to know me, you will realize there aren’t people like me.  But if you mean people who use walkers or have mobility issues or encounter a world filled with physical barriers, then I am willing to engage in teaching moments around disability.  Comments around “people like you” often come with pity. I struggle with offers of help that seem much more about the person needing to feel good about themselves than any perceived need I might have.  And just to be clear, every need you perceive I have, I may or may NOT actually have.  “I said today I was going to be helpful.  Can I help you with that?”  The red flag has already been raised.  I’m her cause for today. She needs to feel good about herself and I have no idea where that comes from in her story. “No, I’m fine,” is usually met with a frown.  “Let me help you,” she may insist. I’m interfering with her good deed schedule. My need to normalize the capabilities of people with disabilities is messing with her need to be perceived as having more power and capability than people with disabilities.  Now right there, I know many will feel I crossed the line.  “She was just trying to be nice.”  Nope.  She was trying to be superior.  She was reinforcing her belief in ableism and the power she holds over people with disabilities.  Staying the course of doing what I am perfectly capable of doing, while maintaining tolerance towards those who would dismiss me is the price I pay for change.  Expecting accommodations for things designed to be inaccessible is another territory I won’t even go to now!

I would really like the world to be different right now.  For all of us. I’d like us to be able to see one another as equals despite any differences in our humanity.  I’d love for us to see the Radical Wholeness in each one without having to say we don’t see any differences or try to ignore the humanity of each one. Someday, not one person will hear words that betray a belief they are less than anyone else. I envision a day when we don’t fear our differences or fear the appearance of lack in the world or fear we are not enough to be valued in the world.  Until we get there, I accept the price I pay to advocate for change. It is not too steep a cost for a better world for all. (Image description: coins laying on a mat that says Live, Laugh, Love)

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