On arrival at her new academic middle school, Sophie entered with the enthusiasm her two outstanding teachers had instilled in her. They had kept her engaged and challenged, and she looked forward to more of the same. She wanted to meet new friends.
Once again, she was the only student in a larger class of special needs kids needing a wheelchair. Her new teacher realized that, unlike the other ambulatory kids, she would not be able to go to the bathroom without assistance. With inadequate help, Sophie would be a burden the teacher did not want. The school Principal brought in a Superintendent who looked at Sophie with school intake records in hand. Seizing on the IQ number, she ordered Sophie to be transferred to a non-academic middle school “better-suited to students like her.” The expert had reduced Sophie and her accomplishments to a single number. It jumped out conveniently to be used against her.
Thus, Sophie arrived at another non-academic middle school in another special needs class. No one conducted baseline testing of what she had already learned, let alone challenges to improve and, therefore, no performance tracking to see how she progressed. She was often given the same simplified homework in small print as other fully sighted kids, which she could not read. Despite Carly’s demands that she be given enlargements to do the work, the staff’s answer was the photocopier machine needed service. It was never resolved because the thought of Sophie doing homework had already been decided as pointless.
So Sophie took a vacation from learning for two years, given no new challenges despite access to evidence of what she had already overcome. She eventually escaped and finished the remaining years of her required public education. She experienced a great high school with excellent staff who truly cared about her and put her back to academic work. No one paid attention to or cared about her IQ number and the devastating impact of her prior experience. Nothing made her prouder than to hear her many friends and her own name called to come to the stage to receive an award. Everyone cheered.
Today, Sophie is a young woman, living in a loving place dedicated to all ages and all kinds of disabilities, not all visible like hers. Because she cannot walk, she has special motorized lifts and curving ceiling tracks to move between bed, lounge chair, and her own TV and private shower. Carly and nearby family members and friends video chat almost every day and visit in person on weekends. Video chat also lets her see and talk to distant family and friends on different continents. She and her housemates travel together on day trips. Sophie is a beautiful woman, inside and out. Thanks to the many family members and professional caregivers. They dedicated years to her, teaching her to reject “learned helplessness” and avoid the all-too-common cerebral palsy loss of body flexibility, motion, and control. She enjoys her power chair much more than being wheeled around manually.
Sophie aspires to go places in life, taking on new challenges, meeting new people, seeing new places. She is very loving and has an indomitable spirit, especially for her caregivers, family, and all the far-flung friends she knows online. Carly and her grandparents remain constants in her life. She has also learned to cope better with the concept of death, as people she loves pass away. It is not easy for anyone and especially difficult given the bonding she experienced with her friends and caregivers.
Sophie participates in life, painting for gifts and cards, holding the pressure foot to help someone sew, and stirring ingredients in the kitchen. Being “parked” and ignored or having someone doing everything for her is not on her agenda. Her consideration for others is a beautiful thing. Yoga is helping her to stay flexible and strong. She has never regretted or been jealous regarding her physical and mental impairments compared to others her age. Sadly, some people dismiss Sophie as a wheelchair with a body in, someone to be pitied. Sophie is much more tolerant of these people and chooses to spend her time with others. It does not take long for her to know who she wants and not want to be around.
Lessons Learned
Carly and Sophie were fortunate to be living near the NICU (Neo-natal Intensive Care Unit). Even in developed countries, such facilities are rarely available to people in rural areas far from the large regional hospitals having such sophisticated facilities. This brings us to the state of global emergency medical access and infant survival rates. Non-profit community organizations can help organize rural health initiatives. Examples include:
Locating safe landing strips.
Mobilizing private aircraft and medical team visits.
Recruiting doctors to fill the voids in small communities.
Seek out and support existing or create new community organizations to change the way things are, through accomplishment, not just aspirational expressions. You have already read stories here, such as Tampa, Florida’s community garden projects, and other collaborative projects on the ground. Writing grant applications and other requests for assistance is essential. Support the disabled by going to events to raise awareness and funds – wheelchair basketball, for example.
Does Sophie’s story resonate with your own family and friends? There are special needs people in all communities. Supporting their special needs enables disabled people to unlock their potential, enrich the local community and live fulfilling lives. That support can be volunteer support, financial support, and emotional support.
Please treat disabled people the same as you would anyone else. For example, talk about the same things, such as life, how the day has been, and more serious issues you’ve encountered and their circumstances, challenges, and goals.
Please instill an understanding and compassion with children of the hurtfulness of words like “spaz” and “retard”. These words are often used in schoolyards and neighborhood cliques by children who don’t know any other way of separating themselves from people who are not the same as them. Those with disabilities are the same - they just face more significant challenges. They should not have to experience mockery as well. Have your children volunteer time with disabled children. Real experiences, such as these, build empathy, compassion, tolerance and gratitude, personal values that help children become well-adjusted, loving adults.
Don’t do things for the disabled – do things with them. Engage their ideas, goals, and priorities. You may be surprised by their hopes and dreams. Don’t assume you know what they need. Ask. And while you are asking, ask what they often talk about amongst themselves. Become part of the conversation. Disabled children are usually very supportive of each other if they can meet somewhere in small groups. Many have no social network – perhaps you can help arrange to get together in community-based meeting rooms.
A remarkable aspect of humanity is the vast diversity of people. I believe everyone has a birthright to reach their fullest potential if they choose. And collectively, we have the responsibility to help others to do so. We never know who among us will make breakthroughs that evolve humanity to a better version of itself. I know that my granddaughter has enabled her grandfather to become a higher and better version of himself, notwithstanding all her physical limitations. Thank you, Sophie. I love you.
*Please note that the names in this story were changed to protect the author's privacy and family.
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