Q&A: Society, Education, and Medicine- Planting Seeds of Change

What do you want mainstream audiences to do with the information they are learning about you and your peers?

Apply it. The deep sadness that borders the line between sympathy and guilt when you see someone like me is instinctual and misinterpreted. It is rationalized as pity for the disabled, but it is much more significant than that. Your brain and body know what you’ve been taught to ignore; that we are capable of more than the media and mainstream medicine tell you we are. Pity is offensive, so is treating us like toddlers: this is where that feeling arises. Even if we can’t communicate back to you in that moment, nothing is stopping you from treating us like neurotypicals our age but you. It’s okay to go against the current. We need radical change. 

What changes would you like to see made within society, the education system, and/or the medical system? 

Society is making many changes I would like to see continue. Inclusion and accessibility are more common now than 5 years ago. The education system has a long way to go. There is not enough staff to support neurodivergent students how they will best succeed in the classroom. Funding for more staff and proper training need to be allocated to the schools so education is more accessible for nonspeakers. Our communication methods should also be accepted. It violates our basic rights to deny access to a reliable form of communication to express our needs whenever necessary. Silencing us by this denial is criminal neglect and discriminatory. It must end. My opinion is the same for our medical system. We do not always receive treatment because physicians aren’t taught to presume competence or be mindful of sensory triggers we might encounter when in their office. I would love to see doctors accepting our communication methods and including us in their discussions. I am not a brick wall or son of Medusa with snakes on my head, I am always listening and begging to be included in significant parts of my own life. 

What do you want others to know about who you are, what you know and experience? 

I am a curious and fun seeking teenager. I love to read, write poetry, wrestle with my brother, cook, and rock climb. Who I look like on the outside is not me. I’m trapped in a body that struggles to obey me. Fortuitously my family has pursued different therapies and treatments, all failed but spelling. My voice has been set free and wanders the earth searching for the key to unlock the rest of me. 

What are your desires for yourself and humanity? 

Life free from discrimination. We all have a purpose and right to peaceful living. To see humanity grow in knowledge and community would make my heart swell with adoration. 

Feelings after my responses:

I love encouragement and peace, but politics doesn’t allow space for them. Sometimes being polite and understanding is an invitation for disingenuous behavior to continue. Hard truth is needed to push change along. If it’s hard to hear, imagine living it.