What Does it Mean to be an Advocate?

 I type a word that feels like a jagged sword and a smooth butter knife. I will hear a word that sounds both melodious and harsh. I will touch a word that is as rough as sandpaper or as soft as a cloud. I will taste a word that is both sweet and bitter on the tip of my tongue. I will speak a word that spits out letters in haste or whispers them calmly. I will see a word that is colorful or dripped in darkness. Most importantly, I will feel a word that has the power to shatter my heart into pieces while simultaneously soothing them back together. Any guess on what this word could be that holds such gravity and significance in one’s soul and life?  The word is ‘advocate’.

According to the Merriam-Webster Dictionary, advocate is both a noun and a verb.  As a noun, it is defined as: ‘one who defends or maintains a cause or proposal,  one who supports or promotes the interests of a cause, one who pleads the cause of another.  Similarly, when used as a verb, it means to support or argue for (a cause, policy, etc.) : to plead in favor of or to act as an advocate for someone or something. 

Why or how is this relevant, you ask?  I believe that from the moment a child is born, it should be their parents who are the strongest advocates for them, not only through love but with a genuine purpose that their child will have the best opportunities for a fulfilling life, regardless of disability. So when this level of advocacy does not evolve or even occur even slightly, what happens?

My personal experience is that when the people, like a parent, you trust the most, are unable to advocate for your needs, you feel a burden. You are not seen, heard, or included. Your self-worth diminishes, and walls are built around your heart. You spend hours speaking out, and no one listens, you spend hours searching for answers to questions swirling in your mind. You feel helpless, alone, scared, and so vulnerable. To counter the deep pain in your heart that rips you apart, other body parts cause you terrible pain that even medicine can’t subside. Tears roll down your cheeks and most often, you are sobbing uncontrollably until you are spent. All of this is exacerbated when you are told that, as a parent, they were not taught how to ‘ advocate’  and therefore they can never do it. WHAT???!!!!

As a seasoned inclusive disabled educator, I am well aware of the need for effective communication and assertiveness skills that parents, teachers and others may lack. Equally, certain cultures may not encourage others to speak or act on behalf of someone else. The lack of resources and funds can also affect advocacy, causing concern and fear for all. The three components of advocacy are collaboration, communication and connection, so even as a parent, these are reasons enough to want to speak out for your child, or in support of your child and their needs. There has to be at least an intention or effort to do this, even if a mistake is made or a bridge gets burned. Advocacy is a combination of words and actions to show love, care and support. It encourages the child to continue fighting and that the parent is their safety net, their guide, their loudest supporter. 

Returning to the question: So when this level of advocacy does  not evolve or occur, even slightly, what happens? Here is my gut-wrenching response:

I cried myself to sleep and shut off towards that individual.  I finally chose not to respond with my usual words and heated Mediterranean emotive temperament. I realized that even though it hurt me deeply, I would have to rely on myself and others in terms of advocacy for my needs. I would have to find the inner strength to demand for better nursing care, a more accessible home, proper physiotherapy, and emotional support for me and for me only. I had to become selfish and place my needs above my sole parent, who was unable to advocate for me or on my behalf. I would have to search for community and belonging somewhere else. I would continue the fight because I am worth it. I was fortunate to experience that with my other parent who has since passed, and I miss it so. And here I believed that the advocacy I had as a child and younger adult came from two committed parents but in reality it was from only one.

Sadly, this comes at a heightened cost that is soul-crushing to me, I no longer feel emotionally connected to this parent. I feel immense sadness and betrayal. My survival is directly dependent on the level and intensity of my willingness and ability to self-advocate. I surround myself with those who offer unconditional support, love and encouragement willingly. The ones who give me strength to make countless unanswered calls, accompany me to appointments, help me weigh the pros and cons of every decision made with gentleness and grace. Those who wipe my tears, hold my hand, cheer with every victory, laugh and cry with me and help me plan ways forward. Safe in the knowledge that even though I do not speak the language or know the laws, we are conscious about what it means to be treated with respect and dignity. With that said, I commit to use my resilient resolve, roll up my sleeves, take a deep breath and proceed with conviction.

About the Author

Nicole Demos is a disabled inclusive educator with over 32 years’ experience and an author. She holds an M.A. in Education and an M.Ed. in International Counseling and has worked in Greece, the US, Russia, and the UK, including teaching Learning Support at the International School of Helsinki. Nicole is a course facilitator at SENIA Academy and an active member of several inclusion-focused organizations. She has presented at workshops, contributed to podcasts and blogs, and published poetry in Harness Magazine, Crip Life, and The International Educator. In her free time, she enjoys reading, singing, baking, rescuing flowers, and spending time with friends and her toy poodle, Sisu.

References

https://www.merriam-webster.com/dictionary/advocate

https://www.humanrightscareers.com/issues/advocacy-types-examples-principles/

https://www.ncbi.nlm.nih.gov/books/NBK195431