“I\’m different, not less.” – Temple Grandin
Tomorrow, December 3rd is International Day of Persons with Disabilities.
This year\’s focus is: “Empowering persons with disabilities and ensuring inclusiveness and equality.” And: “To promote a can-do culture focusing on what people living with a disability can achieve throughout life and work.”
My daughter is twenty-eight, born a micro preemie at 24-weeks’ gestation. She is on the Autism spectrum. The spectrum ranges from being profoundly disabled to very high functioning. People who are considered on the spectrum are as unique in their strengths and challenges as we, neurotypicals are.
I think of a rainbow. All colors and shades are present. She has not experienced inclusiveness or equality. I often wonder if this day will ever come for her. My daughter is considered to be on the high-functioning side of the spectrum. In our reality, Sarina is high-functioning when she is “on” and the opposite when she is “off.”
Her brilliance far outshines her limitations, which presents a huge challenge in daily life. The genius in her is fascinating. Not being able to live alone because of a vast variety of executive functioning delays stands in sharp contrast to this amazingly bright and creative young woman.
She cannot live an independent life. But with the right support, she can live as close to her dreams as we can. She suffers from her dependencies and the fact that she doesn’t belong. We focus on her strengths.
I’m helping her create her own website. She is knitting hats. It started out as a political statement; pink hats for the women right’s movement. Now she knits hats in all colors to support her independence by being able to call a taxi to travel on her own. Each hat she sells buys her two rides around town.
She is offering her language services; translates from English to German and vice versa. Other projects are coming. That, for me, is a can-do culture.
Life on the disability highway happens in tiny steps.
As a society, prone to hide behind statements like no child left behind, we are missing out on a big chance to create a world where all people belong. More love, less hate. We can learn so much from each other when we put compassion in the forefront.
As the mom of a special adult, I only need to hear one question. “How can I help?” I wish I’d hear it more often. I observe the majority of people choosing to look the other way. We could help every person we meet to shine and feel connected if we would pause and offer a kind word or a hand.
My daughter and her peers put the magnifying glass on all our rights and wrongs. They slow us down in self-reflection. Sometimes to the point of breaking. You cannot be with my daughter and be stuck in your own box with your blinders on. Self-righteous know-it-alls and self-absorbed people look down at her, belittle her, offer an ice cream cone at worst, without ever being interested in truly showing up in her life.
That’s the opposite of compassion, that’s called pity.
My daughter needs conscious people, people willing to make inclusion a priority. A once-a-year Christmas gift is not enough.
The magnifying glass shines on my life too. I’m triggered every day. I go by Pema Chodron’s advice when I’ve lost my temper or another battle with time: “Fail, fail again, fail better.”
My daughter has given me my mission. I owe it to her and all people left behind to raise the consciousness of our villages.
I want to light up the sky with stars that forgot they are stars. The stars who:
- Have been dimmed by society.
- Have been given a label.
- Have been silenced.
- Have been made to feel they’re not good enough.
- Have been forced into a box.
- Have any form of disability that the world deems as capping their potential yet, they are actually fully capable.
YOU are Sarina. I am Sarina. Will you show up? Will you stand for inclusion and equality? The next time you feel an impulse to turn away will you pause, step out of your comfort zone and empower the person with a disability to feel perhaps different but not less?
Here are some simple guidelines for you:
- Remember compassion is what we all need, not pity.
- Curiosity with a good dose of patience goes a long way. A friendly hello is wonderful. The person you meet may not respond right away, or at all. It’s okay. It’s the human connection and the intention that counts.
- Genuine interest and common sense are all you really need. If you meet my daughter, I can assure you she’ll be thrilled. She’s hungry for connection. She might tell you what’s on her mind or make a comment about what she sees in you. She will respond to a gentle hint that you’ve run out of time and she would understand. She might say, “I’ll tell you later,” and you can both move on.
May you remember to show others\’ compassion tomorrow for International Day of Persons with Disabilities, and every day thereafter.
– Manuela
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