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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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Anything new?

The page on the calendar has been turned to reveal a new month and a whole new year. In the northern hemisphere, winter has begun, and New Year’s Day dumped a bunch of snow on my location.  Everywhere you turn there is talk of newness: resolutions or intentions, new leadership, new projects, and new hope in alleviating the oppressive confinement, death and struggle of the pandemic.  When you live with chronic conditions and disability, it can be difficult to imagine anything new.  The pandemic has forced many people into the routine people with disabilities have known for eons.  There is a sameness to the days; an isolation to the lack of going out when transportation and mobility are challenges; a longing for some shift in the routine.  While the vaccine offers hope to some to return to the days of wandering outside our homes, for others the vaccine is unlikely to change the routine of the days. So, for you, is there anything new right happening in 2021?

I am reminded of the story in John 5 of Jesus telling a man languishing by the pool of healing to take up his mat.  “One man was there who had been ill for thirty-eight years. When Jesus saw him lying there and knew that he had been there a long time, he said to him, “Do you want to be made well?” The sick man answered him, “Sir, I have no one to put me into the pool when the water is stirred up; and while I am making my way, someone else steps down ahead of me.” Jesus said to him, “Stand up, take your mat and walk.” At once the man was made well. . .” (John 5: 5-9  NRSV)  There are several key points in this for my contemplation of something new in 2021. 

First, when Jesus asked if the man wanted to be made well, instead of saying, “Yes!  Heck Yes!”, the man offered excuses for how he had not been able to get to the healing pool.  How often do I profess to want something and then spend a really lot of time making excuses for how it’s not going to happen?  It is an easy trap to fall into, especially with conditions not conducive to change.  I want to exercise more but…I can’t find a heated pool with sloped entry…it’s cold and messy out…the weather makes my joints hurt more…there’s nowhere to go for a walk…  See how easy it is to list excuses and allow the thing I profess to want to not happen.  Because I have an excuse. 

The next key in the story, however, is what I like to call grace.  Grace is not earned or measured. Grace here is the idea that the Universe doesn’t care about your excuses or even that you have been stuck in excuses for quite a while (like 38 years).  Jesus spoke a healing command anyway.  Knowing what is in our heart, even if our mind is still making excuses, if our soul is ready, change is going to happen.  “At once the man was made well.”  How was the man made well?  Was it something outside the man (Jesus, as an outer agent) or something within the man that responded to the command?  I rely on a metaphysical interpretation of the Bible that goes beyond the literal words.  For me, Jesus is an example of what is possible, (the things I do you can do also, and more John 14:12). For me, Jesus speaks as the universal and eternal Christ or I AM of my being. For me, it is the Radical Wholeness within me which responds to the idea of taking up my own mat and changing my outer existence.  Radical Wholeness is the inner essence of us, always present, always whole, limited only by the way we access it or ignore it.  Waiting by the pool represents our tendency to believe in limitation, ignore our Radical Wholeness and wait for someone or something in the outer conditions to help us, to lift us up, to make a change before we can do anything.  The call to change is to act!  Stand! Take up your mat!  Beyond the literal meaning of standing and walking, Radical Wholeness can express through any action we take on our own. There is no need to leap from a wheelchair, run a marathon, be able to hear or to see. There is no requirement to suddenly become able to become capable of taking personal action to change our lives.  The Diving Bell and The Butterfly is a book written by a man blinking his eyes.

The pandemic will not end tomorrow.  Chronic conditions may not go away; physical disabilities may endure.  The real question is whether, or not, you are ready to create something new anyway?  Is there anything, tiny or big, that you can do differently in 2021 that will make a change in your life?  Or will you be content to offer another year of excuses for why nothing will change and leave the Radical Wholeness within you untapped? It is entirely up to you! 

Image description: snow on a white rail with a dark green bush and snowy pine tree in the background

It’s a new year. Will you be content with excuses or will you make a change?