Guest Post: Learning to Embrace My Disability

It’s early evening, and the last of the summer sun is setting as I type this. Sisu, my toy poodle, is warming my chilly feet, and from the seat by my window I can see the sun’s rays reflect on the apartment across the park. It’s the perfect time to write this essay… and yet I am holding back. My emotions are swirling, and it’s tough to get my thoughts down. 

‍

What am I afraid of? Why is writing a piece on my experiences so hard?

‍

Surely, I am stronger than this. I’ve overcome so much, after all; I’ve proven time and again that I’m stronger than I think I am. I’m constantly reminded of this, but I’m hit with a burst of clarity at this moment, with my sleeping puppy nestled at my feet and the light filtering through the window just so.  

‍

I am strong — despite how it feels sometimes. And my story is an important one.  

‍

Learning to Embrace My Identity

‍

For fifty-two years, I have tried to fit in and be “normal” so that others would not judge me. I have pushed a myriad of feelings so deep inside that when they finally emerged, it felt like a volcanic eruption. Desperate to be liked, involved, and connected, I denied the obvious source of my constant emotional and physical pain: My disability. 

‍

My disability is Cerebral Palsy Spastic Diplegia and I now use an electric wheelchair for mobility. In addition, I have degenerative arthritis in my knees, hands and in my left shoulder as well as a recent discovery of thoracic outlet syndrome in the same shoulder. This means I require nursing support to put on/remove compression socks in the morning and evening and make sure that I am ready for bed. I also have personal assistants to help me with dressing, showering, shopping, and using the facilities both at home and at work.

‍

I spent much of my childhood in Greece, and while I enjoyed the culture, sun and sea, history, and zest for life, there were no other disabled people in the community and accessibility was non-existent. I endured teasing, bullying, distasteful comments, and even the occasional spitball without speaking out. Recess and P.E. classes were the worst. I was always sitting on the sidelines, watching and hoping that I would or could be included. Mercifully, my parents eventually insisted that the graduation credits for P.E. be waived. My challenges, however, remained. 

‍

When I returned to the United States for college, I was saddened to see a noticeable lack of empathy and accessibility —  despite laws and funding designed to protect the disabled. The classes I took to learn the art and science of special education were full of stories, pedagogy, and laws, but I didn’t see them implemented in real life. Securing full-time employment, housing, financial support, health insurance, and further education, among others, was a consistent struggle that over time brought about depression, health issues, and feelings of utter despair.  

‍

When I became a learning support teacher, I passionately advocated for my students, creating a safe environment where they could thrive, learn, engage, and be challenged — yet I couldn’t do the same for myself. It just felt like too much after so many years of feeling less than and othered.  

‍

Luckily with the help of friends from SENIA, my current and former places of work, my immediate family, literature on/about disability, and following disability activists, I saw the light at the end of the tunnel. I took the risk and began to heal within, realize that I had a voice and story to share, and began to embrace my disability as a part of who I am. 

‍

My disability is a part of my identity that I’ve learned to embrace. It’s a part that connected me to a community with an amazing history and culture where, finally, I belong.  

‍

Taking Risks in Safe Spaces

‍

Whether you have a disability or not, everyone deserves equity, security, empathy, self-worth, consistency, and safety. These are especially important in an inclusive educational environment because students need these nurturing spaces to take the risks that will help them grow. These encouraging, safe spaces foster belonging and well-being and serve as the building blocks for positive relationships. 

‍

When I look back on my experiences, I wish that the risks I took were acknowledged and that I had been given a fair chance to speak my truth. Even more so, I wish that all of my qualifications, experiences, interests, and abilities were viewed as part of me, part of a “whole person.” Instead, I often felt like my disability was the only thing anyone saw. I was silently begging people to see me, hear me, include me, hire me — give me the power to choose when I am ready to take a risk. 

‍

These risks are important even if they end in failure — but only when people are given constructive, empathetic feedback on how they can improve for the next time, without patronizing tones and generalizations. 

‍

I’ve learned to become comfortable with risk myself. I’ve accepted jobs in private facilities for students with emotional and cognitive issues that weren’t just risky; they were dangerous. I learned a lot from those schools. I also learned a lot from the public schools that were reluctant to admit my disability was the reason they wouldn’t hire me.  

‍

But these risks led me to teaching in international schools, and I have never looked back. I’ve thrived in the international school environment, which encouraged me to take more risks, like applying for a SENIA Europe Board position. I took risks like these with fear and doubt in my heart, yet the response has been nothing but uplifting, empowering, and inclusive. I am seen, heard, included, and hired. Moving forward, I will continue to take risks, use my voice, and initiate change.

‍

Accessibility Is More Than Just a Ramp

‍

Of course, to become inclusive, schools first have to be accessible — and understand what that means. My childhood homes and international school were not at all accessible. There were stairs without railings, elevators that were often out of order, tables, desks, and counters that were too high, and slippery marble floors. There were no ramps (never mind ones built at the appropriate degrees) or tailored mobility aids.

‍

I would plead for classrooms on lower floors, and to leave five minutes early to avoid carrying the heaviest of backpacks during the rush of passing time. Physical, speech, and occupational therapy services were few and very expensive. 

‍

Imagine the guilt and pain I felt when my parents searched for help and paid out of pocket, even going so far as to hire people from the Netherlands. There was a time when my parents were my physical therapists, when I lay rigid and riddled with pain on the dining room table and both of our tears fell. 

‍

Imagine needing to be fitted for orthopedic shoes, painful braces, and other mobility aids that were not covered by private and public health insurance. 

‍

Imagine my joy at the purchase of a blue Volkswagen van with bright yellow curtains for my first manual wheelchair, only to have it taken by the Greek government because having a car with foreign license plates was against the law. I still can see the endless stack of pleading letters and signed apostille documents explaining my disability at length, and the rejections scattered on the table. 

‍

Imagine how transportation disasters and considerations meant limited access on airplanes, buses, and boats, with the threat of damaged or lost mobility aids looming as well as the stares and ridicule for needing assistance. 

‍

People with disabilities have complex needs. It’s not enough to build a ramp next to the stairs. We’re faced with indignities many people can’t imagine, and that takes its toll. For example, my electric wheelchair is part of my body and should not be touched or leaned on without my permission. It gives me the freedom to be part of the community and interact with others. It’s vital that people consider how people like me move throughout the world when designing public spaces. It’s important for those without disabilities to think about what we’re dealing with — and how they would want to be treated. 

‍

It's hard to look back on my challenges, insecurities, and pain, but it’s important. The world needs people like me to speak up, advocate, and inspire. I myself am still learning how to make my content, environments, and language more accessible to others with invisible and visible disabilities. The most important thing is that we keep trying to be more inclusive, more empathetic, and more encouraging. 

‍

That’s why, even though it’s scary, I still tell my story. Hopefully, my story can turn more corners of the world into safe spaces where people of all abilities can take risks — and embrace what makes them unique.   

‍

Nicole Demos is proud to be a disabled Third Culture Kid with 32 years of teaching experience in the U.S., Russia, Greece, the U.K. and Finland.

‍

As an active member of the SENIA Europe Board, Nicole advocates for inclusion, equity, belonging, and diversity within her school and community. As a result of finally embracing disability as part of her identity, Nicole is eager to share her experiences with others.

‍