Thursday, May 14, 2015

A List of Do's

For some odd reason, I see a lot of lists pop up with titles like, Top Ten Things Not to Say or Do to a Person in a Wheelchair and Ten Ways Not to Act Around a Person in a Wheelchair. I don't really mine the lists so much and some of the items on the lists are funny. Although, they are really only funny if you are in a wheelchair and understand the humor and perspective. While the lists are fine and harmless, I think they only further separation. Imagine if you handed out a list of ten things someone shouldn't say to you or do around you. I am not sure that's very warm and inclusive. 

In my bit of a rant about the lists, I composed my own list. With the emphasis on the two words my and own. I do not speak for anyone else in a wheelchair or any other person. This is a list of the way I feel and the conclusions I drew from my experiences. We all have our own perceptions and experiences. 

A List of Do's instead of Don'ts When Interacting with a Girl in a Wheelchair,  Named Sarah.
  1. Do understand I am not trying to be like you. I am like you. We may put our pants on differently, but we both wear them. I adjust, everyday, to life’s ever changing flow. I adjust when I learn to live with my pain, even though my physical brokenness happens to be quite obvious and maddening. Just because I can’t readily see your scars doesn’t mean they aren’t there. Just like you, I am trying to overcome and find the beauty in a world that makes me cry as much as it makes me laugh. I feel joy and sorrow and concern and hope. I am just like you, only sitting down.
  2. Do have patience with me. I am perpetually late. I spend quite a bit of time taking care of this body and learning to accept its unpredictability. Over the last several years I learned the importance of patience and learning to practice patience. I need patience to deal with my own life and my own body and their constant disruptions and needs. Once simple tasks now take substantially more time. Getting dressed is much more difficult and requires focus and a bit of strength. This need to cultivate and practice patience opened my eyes up to everyone around me and how much patience I must give, as well. We are all doing our best. We are all trying our best. 
  3. Do offer help. To offer assistance is an example of kindness. I would never discourage kindness. But, just as much as I respect your intention to be helpful, please respect my answer to your offer. After fifteen years, I did finally learn the fine art of help. I need it sometimes. And, sometimes, I will have even have to ask for it. It’s not often that I need help, though. Mostly, I need assistance to reach items from high shelves and change light bulbs. Your offer to help only makes it easier to ask. If you do ask me, just trust my answer. 
  4. Do ask me for help and let me help you if you need or want the help. Yes, my life can be hectic and a ridiculous amount of work sometimes. This truth doesn’t change that, like you, I choose to be aware and offer a hand when I see a person who needs my hand. And like you, I want to help when I am able. A mom at the river trail was struggling with her jacket. The sleeves were entangled in the straps of her baby carrier. Her sleeping newborn, finally asleep after many loops around the park, was her priority. She, carefully and slowly, tried to untwist her jacket sleeves. I approached her and offered my help. She looked up at me, still delicately unwinding her jacket and said, “Ugh, I don’t know. Wait. Just wait a second. I might. I’m just not sure yet.” I sat with her and waited. She freed her jacket and said, “Thank you.I think it was great to have you around just in case I needed the help, thank you.” Just as I might not need your help sometimes, you may not need mine. I think it is far easier and better to offer the help. We all need a bit of help now and again. Even if we just sit with a person. 
  5. Do ask questions. I don’t mind questions born from curiosity. Understanding is crucial to a better, more peaceful, and inclusive world. If I am uncomfortable with a question, I usually just don’t answer. And if the question seems a bit strange to ask a stranger, then probably don’t ask the question. I welcome thoughtful questions and I do my best to give a thoughtful answer. I am not an expert. Just an expert on my own life. I feel the more I open up about my own loss and pain and sudden life change, the space of mutual understanding only grows larger. And when we contribute to the growth of this shared space, we begin to heal each other’s wounds. Physical and mental injuries, alike. 
  6. Do understand my SCI is an injury. I didn’t choose this way of life. It just happened. I had plans. I had travel plans and life plans. I danced a lot and never sat still. One evening, my plans were interrupted. And even though I struggled immensely, I began to notice the sudden change to my outside world didn’t have to affect my inside world. The world where the dreams live. I could still live from the place I did before my injury. The place that knows what she really wants. Only now, this injury forces me to be still and this stillness provides a clarity I didn’t know existed. I may look a bit different to you and appear to live my life a bit differently, but, I assure you, I am simply a person learning to adjust to the sureness of change. Just like you.
  7. Do assume I work very hard. In order to live a good life, I must stay very mentally and physically fit. This takes discipline and a great deal of effort. My life is a constant balancing act, just like yours. You may not understand the work I do and that is okay. I work to contribute in any way I can and I try to live a purposeful life. Just because half of my body doesn’t function anymore doesn’t mean I decided to stop functioning. I work that much harder to start on an even starting line, but I am okay with it. I am willing to show up. But it took work to get here. And it still takes work.
  8. Do say you think I am an inspiration if you happen to think that I am an inspiration. My guess is the reason please don’t call me an inspiration shows up so frequently on the other lists is because it’s sometimes difficult to be called an inspiration for simply living life. I understand this perception. However, when I really think about what inspires me most, it is the regular, just living life stuff. The way we all make it through the day’s unpredictability and life’s uncertainty. The we all carry heavy burdens and, despite these weights, continue to move forward and wake up each day. When I look in the mirror I don’t see an inspiration, but I bet you don’t see one either. We can’t decide what inspires some and what inspires others. Life is about inspiration. We are supposed to breathe in and fuel others. 
  9. Do know I am aware of my wheelchair and different abilities. I know what it is like to live an able-bodied life. My life is completely altered. Before my injury, I knew very little about Spinal Cord Injuries. Now I know what it is like to be me in a wheelchair. Not anyone else. Only me. The days can be long and hard and, also, full of life. My life isn’t over, just a bit different. My fragility is now my strength. This fragility leads me to new and better perceptions of the wonder that lives all around me. But, this awareness of what once was, never goes away. It’s a grief that’s simply absorbed. I learn to balance the grief and the hope, just like you.
  10. And finally, do assume I dream and love and hurt and hope just like you. Though they may have been for a bit, my dreams are no longer paralyzed. I don’t allow life to only exist in my pain. I regularly seek the good and look to see it others. The only thing that is different about me is the outside. That is it. My insides are just like yours. If anything, I have learned that what our physical eyes can see is nothing compared to what our soul eyes can see. We should all look at each other with these eyes, the soul’s eyes.
"We are all alike, on the inside."
-Mark Twain


  1. Wow, Sarah. Your gift for expressing yourself just blows me away. You ARE inspiring!

    1. What a compliment! Thank you so very much, Mary. Your kind words are so appreciated!

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