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Disability is not Black and White

Disability is not Black and White

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To the Author of the Anonymous Note Left on My Car Window:

I think I recognize you… I do. Before becoming a Mom, I used to live in your world of black and white, with everything in order, in its place. I had a plan, a schedule, a list of finished projects to check off, checklist and all. How wonderful for you that your life is so structured, so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines.

This time, though, in your hurry to keep things neat and orderly, you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my little girl’s pink manual wheelchair that we use for “quick” trips. Maybe from your view, you only saw my older daughter and me, and not Zoe’s little girl bubble gum pink wheelchair.

But forget all that, it could have only been my older daughter with me that day, parked in that same spot and — depending on her health at that moment — in your eyes, we would have appeared to be at fault, even though her doctor almost nags me, reminding me often to use the medically-authorized permit to conserve her energy when needed. But looking at her, you wouldn’t know she has the same progressive metabolic disorder as her younger sister. She doesn’t have a wheelchair, but she has the same rights — all invisible to YOU from the perspective of your world.

I recognize where you are from. I used to live there, too. I used to have checked-off lists, awards touting my accomplishments, perfect hair, great skin, sparkly eyes, a quick wit, a clean car, a social life, a large social network, an organized calendar, vacation plans set in stone and no overdue library books. But then I became a mom. And unexpectedly, a mom of a special needs child. A child with no life-long guarantee, no definitive prognosis and no detailed treatment plans. Now my family has good doctors, a good attitude and a good family life.

My life is good, but not so easily structured. My skin is not so healthy, my hair often flyaway, my eyes most often tired. I am up multiple times throughout the night, I rise at 5 and go full speed until 9 at night, still stymied and determined to do more each and every day. I miss the friendships I used to have, the once-so-easy-to-achieve professional accomplishments, but I don’t miss the world you live in.

I am a kinder woman who lives in a world that is no longer black and white. Sometimes gray is good, a salvation, a retreat from something that could be much worse. My priorities were reshuffled for me, and now I would never think to judge another.

I am always in motion and I am grateful. Grateful for the touch of my child who needs my hands to steady her, grateful for my child who craves my words to calm her, my child who needs my hugs to soothe her. I am even grateful, that I no longer live in your black-and-white world.

This was originally published at SpecialNeedsMom.com

Suzanne Perryman

http://www.specialneedsmom.com Writer Suzanne Perryman celebrates the simple, every day inspiring moments of special needs parenting, one story at a time, at her blog specialneedsmom.com. She lives in Scottsdale, Az .

You can follow her on Facebook, Twitter and Pinterest.

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5 Comments

  1. This is beautiful. Thank God for ppl like this.

    Reply
  2. That’s such a shame that people can’t except different. Just because your not in a wheel chair and missing arms or legs doesn’t mean your not disabled. People really need to stop judging others. Epilepsy needs awareness too just like other serious disabilities. Shame on the ignorance of the person who wrote that note!

    Reply
  3. It makes me sad to see people become angry over things that have no affect on them whatsover.

    Reply
  4. Wow, Well put! I have often tried to explain to others this exact thing! Bravo for this mom!

    Reply
  5. I have CRPS. It’s a syndrome/disease that causes an unyielding pain that’s very hard to treat. I call it an almost invisible disease. Sometimes I am swollen, etc, but you still wouldn’t know what is wrong with me. It affects mostly my upper right side from the hip up. It does affect my amount of oxygen, etc sometimes, so having a handicap card can be a real help on hot or cold days because they are usually my worst.
    People are very cruel in this world. I worked over a year after my injury untilI had issues with my other arm and couldn’t drive anymore. I could say a lot more, but ppl should be looking at what they have because one day it may be gone.

    Reply

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