Nikhedonia and the music that brought me back to Autism Advocacy

The familiarity of quarantine

When the news of Covid-19 becoming a pandemic hit my ears, I was already prepared for the great shift to online life. In 2015 I began building an online music school and named it Enlightened Audio Academy. Quarantine left students searching for a way to continue their music education, but I already had a school structure in place that met their needs. By April 2020, I had a full roster and the comfort that I could financially survive the pandemic.

My headstart meant I was already aware of the struggles. I understood the fatigue and the tech issues, and I had already learned how to put into words the things I used to just physically assist the student with doing like posture adjustments and violin bow control. I had encountered all of this and developed strategies to overcome them. Before Covid, these efforts were not seen as important. I recall when I first went online, some parents asked for a discount on lessons because they felt online classes were of lesser value than the in-studio sessions.  I struggled to validate my position that online learning provided instruction in a new way and presented new tools that were unavailable with in-studio sessions. It wasn’t better, it wasn’t worse, it was just different.

Nonetheless, Covid has created circumstances that are eerily familiar to me. Building a school when cost effective solutions for small schools didn’t exist and resisting the constant negative push back from big box music stores presented challenges that had no immediate solutions. People who didn’t know me or my teaching history would tell clients to avoid online schools like mine because they were impersonal and denied kids a quality education.  It came as no surprise to me that the world of music education was resistant to change, but I never expected to fight for my school every day, with every outgoing breath. When one is squeezed by the limited thinking of others who have influence but resist discomfort, you either learn to live with fewer choices or cultivate your own momentum from your pure desire to do more.

I too struggled with the exhaustion of online teaching and I compared it to the exhaustion of driving long trips alone, but I was dismissed by many.  No one knew of “Zoom fatigue” before so many people went online. (3.6% of the US workforce worked from home in 2018 half-time or more. Whereas Global Workplace Analytics projects that number to be 25-30% of the workforce by the end of 2021).  I would get an earful from people about how I didn’t know their exhaustion of in class teaching and how lucky I was to work in my pajamas all day.  I was forced into a sort of professional quarantine. There were the real music schools, and then there were the “subpar online schools” and apparently, pre Covid, I was viewed as being in the latter category.

A Sabbatical from Autism Advocacy -or- yet another quarantine.

In my work with Autism Advocacy, I encountered a similar dismissal of my own experiences. My presentations were known for their positive message. I shared my experiences of living with Autism and I asked parents to have hope that their child could succeed. I was presenting a presume competence model long before the term was in vogue because I believed it to be true. Following my presentations, it was commonplace for parents to approach me to share their feelings and thoughts. At first, parents seemed filled with hope for the future of their autistic child. Following a presentation in Atlanta I was confronted by a parent of a non-speaking Autistic child. Long before alternative communication methods such as RPM and S2C were well-known, children with non-speaking autism were often seen as mentally deficient, robbed of a normal existence by autism.  The challenges parents faced were immense, largely due to the overwhelming lack of attention by professionals on therapies with presume competence models.  This parent was upset with me because she felt I couldn’t understand her more severe son (her term, not mine).  She felt I didn’t know suffering because I could speak, and I certainly didn’t know her personal suffering.

Over the years working as an Autistic Advocate, I met more and more parents like her. Despite my positive message and my fight to free my non-speaking peers from the misconception that they had no intelligence, I would continue to be told by parents how I never truly suffered because I could speak and didn’t cause self-injury from an out-of-control sensory system. They couldn’t see the struggles I endured and to many it just wasn’t important. I was good enough at pretending to be normal that in the end, my parents could retire from caring for me.

The negativity from the autism community and the resistance from the music one started to wear on me.  My blog suffered as I struggled to make my words reflect what I truly wanted to express, eroding the impact until my words started to hurt people I actually cared about. No one saw the conflict within me.  After years of enduring this, I broke and took a break from writing on my blog, and I stopped accepting speaking engagements. I took a sabbatical from autism advocacy but again, it felt more like a professional quarantine.

Nikhedonia

Now that we are all chest deep into the global pandemic, more of the world understands the challenges I face as an online teacher.  Everything from the zoom fatigue, to dealing with lack of mobility, to balancing home life with work. I wonder, do they feel lucky to be home all day? I’ve watched the frustration unfold with teachers as they shift their classroom experience to a virtual environment. Their struggles are real, and they must do so with no playbook and a litany of complaints from administrators and equally frustrated parents. They are where I was 5 years ago when I realized I had to break the system to make it work in a digital world.

I know many people think we are going online “until things return to normal” but I don’t see it that way at all. I see Covid as a magnifying glass that amplified 10-fold the problems that were already there. School systems were going to change anyway, or break if they didn’t. Covid just made it all happen faster, and for that I am grateful. I like it when society in near unison is forced to let go of their grip on the proverbial flagpole and let the wind carry them to new ideas. Learning to run with the wind is way more productive and invigorating than holding on while the storm passes.

We are in this amazing place, as a global community, where we could share that feeling of hopeful excitement as we anticipate success in a much more digitally literate world.  That feeling is called Nikhedonia (from Nike, the Greek goddess of victory and hedone, pleasure) is that feeling that fuels our first step.

Nikhedonia is my closest ally. I mentioned before that when one is squeezed by the limited thinking of others, you either learn to live with fewer choices or cultivate your own momentum from your pure desire to do more. I prefer the latter. I feel so empowered by Nikhedonia because I just can’t see why I should let anything keep me from success. But by sense of Nikhedonia can be timid, enduring only so many hours of comparative pain shaming from others.

Why do we feel the need to devalue other’s pain? Why does the guy with the biggest scar win? Why does one generation’s suffering remove the right from the next generation to complain?  When we use our suffering as a measuring stick, we miss out on the human experience of Nikhedonia. I want to resist the victimhood that follows this tragedy called Covid. When we suffer, we endure a loss, and we are hit with a wave of intense emotions like anger, defeat, loss and disbelief. As the pain melts away, there always seems to be that moment when we start to dream again.  A moment where we allow ourselves to want for a better future.  We start to construct a way forward and come out victoriously. As the dream forms into action steps, we start to believe we can rise from our pain and do something that matters for all humans. That is Nikhedonia and I know the people I have lost to Covid would want me to embrace it.

Recently, Malala Yousafzai was interviewed by Letterman on his new Netflix series My Next Guest Needs No Introduction. When Letterman asked her about revenge, she replied, “…the best revenge is forgiveness.  The people who targeted me, and who tried to attack me, I forgive them because that’s the best revenge I can have.” She went on to explain that “the person who actually attacked me was a young boy. Similar age as me. And he thought he was doing the right thing, and that the was targeting this person who was evil…I think we really need to help people ‘cause they’re just people like us.” I remember watching this and thinking my excuse to walk away from autism advocacy was puny. I needed to forgive those who tried to tear me down because they are just people like me, who think they’re doing the right thing.

 I feel confident that if I were to meet Malala, she would not reduce my experiences with her own. We would bond over our collective goal to improve education for all people, even when faced with resistance. Being shot by the Taliban is part of her story but it is not, by her own admission, what drove her to fight. The anticipation of success is what drives her. Nikhedonia drives us both.

As we move forward from Covid-19, and as the world embraces new leaders and new ideas emerge, we cannot waste our energy needlessly grasping onto our suffering as a way to defend our right to knowledge. Our pain is our own, and it is real. I have suffered in my own right and the losses I felt were real. I am not fragile, I am human. I relate to Malala not because we were hurt by others, but because we dared to dream when others told us not to, and then continued to do something about it.

As I told my documentarian, the people in my past who did harm to me do not deserve a place in my story. I do not give them credit for making me who I am any more than I credit the rock I stub my toe on for making my bones stronger. I chose to feel my pain, heal, and then embrace the feeling of Nikhedonia. I will not be a victim, by my own hands or by someone else’s.

I heard the music play

Re-emerging from professional quarantine has been like waking up from a long, dreamless sleep. I sat down at my computer in January with the intention of writing a blog post – the crickets were louder than my thoughts. Slowly I started to reach out to professionals and organizations in the autism community and carefully mapped out what obligations I had the energy to fulfill.

The true inspiration to work in advocacy came in February 2021 as the controversy over Sia’s new film Music trickled into my newsfeed. I wanted to be careful because I didn’t want to come from the perspective of a victim. Like Malala, I want my work to change lives and bring peace to communities. When I saw that the non-speaking community wanted to use alternative communication to respond to the film, I saw clearly what my first action should be coming back into advocacy – supporting the autistic community with my music.

I was honoured when Communication First asked me to compose the score for their film LISTEN. It is films like LISTEN that bring people to the table to talk about the 21st century mindset for disability. Even artists and filmmakers with the best intentions starting out can be pulled astray by the 19th Century reduced competency model that still seems to dominate the disability dialogue.

For years the large, well-funded autism entities have done little to include the autistic voice and it has created an Autism Industry that makes far more money off of us if we just do what were told. Before alternative communication methods were accessible to non-speaking autistic people, it was the speaking autistics that were the canaries in the coal mine. We tried to tell professionals, teachers, and doctors that there was more to autism advocacy than researching causes and setting up assisted living. We tried to tell them that non-speaking people had a mind, and their voices needed a way out of their bodies. We were ignored, and then chastised. This is a whole other topic for another day, but I can say that we didn’t arrive at this place of excluding the autistic voice without warning.

LISTEN reminds us that it is time for the world to know that autistic people have empowered themselves by seeking out the supports they needed outside of the research laboratory. Autistic people, both speaking and non-speaking, were tired of waiting for their invitation to the disability discussion table, so we built our own.

This film is a catalyst into the open discussion desperately needed. While the world learned to use technology to carry on business and school as usual, I rejoiced in the idea that the world might be able to see our autistic world a little more clearly. While the world lived in quarantine and lockdown, I hoped others would understand the isolation and loneliness that people with disabilities often feel. There is no need to compare scars, and I certainly do not intend to do that here, because we cannot allow another pandemic to spread, a pandemic of fear and victimization.

Instead, let’s have those really hard discussions, and have them with the people who live with disabilities. To Sia, if you are reading this, I invite you to have a public discussion with us about your film. To Autism Speaks, I invite you to a real debate about including the autistic voice while still meeting the needs of the parent. And to any other Autism organization out there who benefits from large financial and government support, let’s talk. You are the people who can influence millions. Don’t you want to make sure you’ve got it right?

My name is Laura Nadine and I have autism. I’m ready to LISTEN. Are you?

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