Nicole Demos is a trailblazer in the field of inclusive education and a passionate advocate for disability rights. With over three decades of experience, Nicole’s journey spans multiple countries and diverse educational environments, reflecting her unwavering commitment to fostering inclusivity and embracing disability. Her rich background in education, coupled with personal challenges, has shaped her into a powerful voice for the disabled community.
In this article, Nicole candidly shares her personal story, the struggles she faced growing up with a disability, and her journey towards self-acceptance and advocacy. Through her story, Nicole aims to inspire others to embrace their identities and advocate for a more inclusive world.
Nicole Demos, a disabled inclusive educator for over 32 years, holds an M.A. in Education and an M.Ed in International Counseling. Nicole worked in Greece, the US, Russia and the UK before teaching Learning Support at the International School of Helsinki.
She has presented workshops on educational trends and participated in podcasts and blogs. As an active member of the Diversability Leadership Collective and SENIA Europe, Nicole strives to educate on the importance of inclusion, disability identity, advocacy, equity and belonging.
Since leaving ISH, Nicole has recently discovered a love for writing and has published poetry online at the Harness Magazine. This has led to her writing another poem to be included in a Danish architectural press publication, Building Diversity.
In addition, Nicole has also been nominated to Diversability’s 2024 D-30 Disability Impact List for her continued efforts. Her hobbies include reading, singing, baking and spending time with friends and her toy poodle Sisu.
Read on to find out more about Nicole Demos in her own words.
Confronting the past with courage
The summer sun is nestled comfortably in the crisp blue sky with no cloud in sight. Ahead of me, the blue waters of the Baltic Sea are dotted with an assortment of lush tree-covered islands, intermingled with white sailboats. If I close my eyes briefly, I journey back to my ‘home’ where the salty air and waters would soothe my aching body, mind and heart.
Eyes now open I blink and Sisu, my toy poodle resting peacefully on my outstretched, tired legs, looks at me with his chocolate dark eyes, tilting his head. As if reading my mind, he pats me protectively and his sigh echoes mine. Surely this is the perfect time to share my story as I have before… yet I am holding back. My heart is racing, my palms sweaty and it’s challenging to write this down again. What am I still afraid of? Why is writing a piece on my past experiences still so painful?
Surely, my resilience speaks for itself. I’ve overcome so much, after all; I’ve continued to prove that my strength is my superpower. So despite these valid feelings that surface from within I take a deep breath and begin to type these words. And my story of how I embraced my disability is an important one to share.
From an idyllic childhood to confronting disability
I have just celebrated my fifty-fourth birthday with Sisu, my mum and dear friends at a nearby park, overlooking the Baltic Sea, where we grilled, drank, danced and sang. What a glorious day of fun, laughter, reflection and tears. My new electric wheels made their debut for this milestone and I belonged there without hesitation. But to proceed I need to take you back a bit, to 2022 just after the dreadful Covid pandemic.
Since birth, I have tried to fit in and be “normal” so that others, including my family, would not judge me. I have stifled 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, degenerative arthritis in my knees, hands and thoracic outlet syndrome in the left shoulder. But wait there’s more… add sciatica, sleep apnea and bouts of depression.
When younger I strived to do it all independently but now I not only use my wonder wheels I also rely on nurses and personal assistants to help me with dressing, showering, travelling, shopping, and using the facilities at home and in public.
Born in the sleepy town of Rumford, Maine to a mother from the Netherlands and to a Greek-American father there was no doubt that my life would be filled with languages, adventurous travels, extended family and friends along with great joy
My idyllic childhood in Greece was filled with enjoying the rich culture and history, the warmth of the sun and the cool saltiness of the Mediterranean intertwined with an indescribable zest for life. Picture perfect right?! Sadly there were no other disabled people in the community and accessibility was non-existent.
No representation in the media, literature or in any aspect of life, the lack of medical support and overall intolerance was beyond heartbreaking. Imagine the anger and guilt my parents felt when they were advised by a doctor in Athens, Greece to ‘ throw me away’ or to secure a bed in the city’s insane asylum – the only two options available to us then.
Luckily my parents fought and persisted in raising me with love and patience but my challenges remained. Teasing, bullying, distasteful comments, sitting on the sidelines, lack of empathy and endless waves of apathy and ignorance. All of this yet we as a family decided to remain in Europe instead of returning to the US, where maybe life would have been easier.
The struggles and triumphs of a disabled educator
Attending college in my native United States, I was disheartened 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 none of these were implemented in real life.
A consistent struggle to get a full-time job, housing, health insurance and to become a valued member of a community resulted in my first bout of depression, health issues and complete despair resulting in my first suicide attempt. Somehow I persevered and resolved to hone my craft as a teacher
As a learning support teacher for over 32 years, in the US and overseas, 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. I fought for opportunities that were risky just to show that I was worthy. Over time I grew weary of feeling less, of being overlooked, told to try again despite years of experience and two master’s degrees, I was a tired empty shell. But my story of how I embraced my disability was an important one to share.
Embracing disability and advocating for inclusion
A stroke of luck came my way during Covid, and I applied to become a Board member for a European chapter of SENIA, (Special Education Network Inclusion Association) and to my shock I was chosen! A risk paid off, an entire organization of fellow educators whom I had never met believed in me and appreciated my worth. I would finally be able to use my skills, beliefs and experience to promote inclusion for all.
Listening to a now dear friend Cath Brew share the importance of believing in oneself and how our identity is framed by our experiences, beliefs and strengths further fueled me forward. I chose to proudly use ‘disabled’ as one of my pronouns and what a catharsis that was.
Learning about trailblazers such as the late Judy Heumann, reading literature on/about disability, and following disability activists like Emily Ladau and Nina Tame, I saw the light at the end of the tunnel. The healing began within me like a rising tide, I used my voice to advocate for my needs and others. I educated myself about the importance of language and the hidden threat of internalised ableism. I shared my story with those eager to listen and began to embrace my disability as a part of me.
My disability is a part of my identity that I now embrace. I am connected to a community with an amazing history and culture where I BELONG.
You can find out more about Nicole Demos by following her on Facebook, Instagram and LinkedIn.