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When a Little Girl Felt Sorry for My Son


Mary Evelyn Smith

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She was maybe 6 years old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that’s heavy on sugar and light on spice. She walked up to my son as he wheeled in circles outside the sanctuary after church and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.

And then, without taking her eyes from his face, she said, “I feel sorry for him.”

I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.

Children ask all sorts of question about my son.

Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?

But questions are easy. For children, questions have answers.

“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.

A system that tells her my son’s wheelchair is “very sad.”

A system that tells her he is a “poor thing.”

A system that uses words like “confined to,” “suffers from,” and “bound.”

A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers and friends.

A system that tells her my son smiles is “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.

Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.

So I stood there shocked out of my comfort and fumbling around for words to make this right. I wanted so desperately to undo the damage done by a system that is still learning to accept my son. But I was tongue tied and clumsy as I mumbled something about “not needing to feel sorry…” And I walked away feeling like a failure. As if this little girl represented the whole world, and I had missed my chance to set the record straight.

I realized I am very small. I am only one person.

Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19 years old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.

“Something’s wrong with that kid,” he whispered to her. “Did you see his back? He can’t walk. So sad…”

I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child’s life is very, very sad.

“It’s not sad,” she said, looking at my son with so much kindness. “My brother was in the Special Olympics. Nothing sad about it. That kid is cute.”

And then my heart turned to mush, and I closed my eyes to keep from crying.

I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.

More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.

I am only one person.

But I am not alone.

 This post originally appeared on What Do You Do, Dear?

 

 


08.03.2015

All news:

Study visit to UK Parliament
American Ambassador visited CIL Serbia
Support to civil society organizations in drafting Local Action Plans in area of disability
Terms to Avoid When Writing About Disability
Employment of Persons with Disabilities
Parliamentary Working Group on Disability established
Training for PAs in Velika Plana
Project promotion
Round table in Smederevo
Round tables
Tomorrow Is Too Long to Wait for Inclusion
International Day of PWDs
29 Ways to Describe a Disability to Someone Who Doesn’t Understand It
CIL Serbia realised another PA training
Sectoral Round tables
Why Using a Wheelchair Is the Opposite of Giving Up
The 3 Words I Want Every Single Hospital Employee to Hear
8 ‘Helpful’ Things That Don’t Really Help People With Disabilities
When a Little Girl Felt Sorry for My Son
PA training in Vrsac
7 Microaggressions Disabled Folks Face at the Doctor’s Office—and 6 Ways to Fix Them
The 12 Pillars of Independent Living
The social model of disability
Hidden Limits
Dear Society, Why Don’t You See Different as Beautiful?
Myths and Facts About People with Disabilities
International Day of Persons with Disabilities, 3 December 2014
Licencing
EU Delegation in Serbia supported the increasing of political participation of persons with disabilities and the impact on policy development in Serbia
National Conference
Accredited Program of Education for Personal Assistants working in five cities in Serbia
CIL Serbia held its Presidency and the Assembly meetings
Jointly forces for economic and political empowerment of persons with disability
With joint forces of political and economic empowerment of persons with disabilities
"Public sector for all citizens"
Combining the strengths: Jointly for political and economic empowerment of persons with disabilities - EIDHR
Combining the strengths: Jointly for political and economic empowerment of persons with disabilities - EIDHR
Combining the strengths: Jointly for political and economic empowerment of persons with disabilities - EIDHR
"Walk of Shame on 5 May" - Save the date
Autism Awareness
SEMINAR – COMMUNICATION AND NEGOTIATING SKILLS
Donation of natural supplements
PROUD OF WHAT WE DO IN PAST 10 YEARS ( and a few more)
Establishing an informal parliamentary group for improving the status, position and quality of life of persons with disabilities ( PWDs Group )
International Day of persons with disability marked in Serbian National Assembly
DISABILITY IS NOT THE QUESTION OF CHOICE – YOUR ATTITUDE IS
Advocacy and local support networks building
Workshop on social enterpreneurship
Stop Saying 'Wheelchair-Bound' And Other Outdated And Offensive Terms To People With Disabilities
ANTI POVERTY NETWORK SERBIA
INTENSIVE EDUCATION
International Day of Persons with Disabilities, 3 December 2013
Voice for equality
A life of dignity for all: accelerating progress towards the Millennium Development Goals and advancing the United Nations development agenda beyond 2015
Sustainable support services for PWDs in Serbia
FORCED STERILISATION FINDINGS
Accessibility as a human right
Regional Balkan network of DPOs
Pravilnici
By laws
State of the World's Children
Process of adoption of the Law on Personal Assistance in Slovenia
Every child needs a teacher
Hall of Fame: Gordana Rajkov, CIL Serbia
INNOSERVIS
REGIONAL SEMINAR
Round tables
ENIL’s key definitions on Independent Living
TELE ASISTENCY
The Projected Image: A History of Disability in Film
Breaking boundaries
HUMAN RIGHTS DAY - 10 December 2012
Rio +20
Education for Personal Assistants
PLACE FOR US
Recognize how your stories influence your experience
Fair of Civil Society Organisations
PLACE FOR US
Europe 2020 Strategy
International Day of Persons with Disabilities, 3 December 2012
Seven Reasons to Attend a Job Fair
A PLACE FOR US
ZRENJANIN – CITY FOR ALL
A PLACE FOR US
Joint Committee publishes report on the implementation of the right of disabled people to independent living
The Cost of Disabilities Could Reach 77.2% of Household Income
Ministry for Labor and Social Policy: The First Fair on social protection in Serbia
Call for Submissions
The World Heritage Convention – 40 Anniversary
LAWSUIT CASES IN THE WORLD
Regional Conference on Independent Living
Enjoying the same rights
The Arts Edition
A PLACE FOR US
World Bank Projects Sluggish Growth for the South East European Economies in 2011 and 2012
International Day of PWDs
My Daughter is Leaving Home: Reflections on Living Independently
A PLACE FOR US
MIDWAT - phase II
II MODULE - QUALITY STANDARDS IN SERVICE PROVIDING
FREEDOM DRIVE
New ENIL EC member from Serbia
Center for Independent Living Serbia OSI at the Serbia-EU Forum
FREEDOM DRIVE 2011
DPI Europe
STUDY VISIT TO SLOVENIA
Step by step to the project
International Day of Persons with Disabilities, 3 December 2011
The right for work for PWDs
Development of Nis municipalities



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