Advocacy Through Poetry: What It Is and Why It’s Important

Everyone has parts of themselves that they struggle with, but, more often than you think, our biggest struggles are related to our biggest strengths. For me, my poetry and my innately poetic brain is undeniably connected to my Autism. Autism is a developmental disability that affects five distinct areas: sensory perception, social skills, communication, executive functioning and planning, and intensive focuses and interests. Every Autistic person is affected differently and to a different extent, but, for me, I would say communication and sensory perception are the two areas I struggle with the most.

It surprises many people that I struggle with communication because I am so verbal, but it’s not so much that I struggle to find the words to say. I struggle to say things in a way that people can understand. I am prone to metaphoric language and I have difficulty navigating tone and connotation. In poetry, these issues melt away. I am no longer measured by my difficulties in responding concisely in real time, but rather by the way I can make concepts understood to both neurotypical and neurodiverse populations. Speaking of measurement, my most popular piece of advocacy poetry, the one that I’ve been asked to read again and again, is called “Measure Me” and it goes like this:

Measure me not in stumbles

Measure me not in doubts

Look not to where I have fallen

To learn what I am about

Measure me not in jargon

In labels others place

Not what I have attempted

That you deem now a waste

Measure me not in scales

That fail to grasp what I have done

These scales overlook my efforts

And measure me as none

Measure me not with a mind

To limit everything I do

Measure me with the kindness

I would show to you

Measure me by the reactions

When I walk into a space

By the joy I receive

From putting smile to face

Measure me by the milestones

I wasn’t sure I’d make it through

Measure me by my efforts

Not what I was able to do

Only look back

To see how far I came

Measure me from the day

I said I’d never be the same

Measure me by my fears

And how I have forged ahead

Measure me by the poems I write

As I lie at night in my bed

Measure me not in hopes

For a means to pass blame

And if you must measure me

Measure me by what I overcame

This poem represents my approach to being a self-advocate. Autism is a very difficult disability to understand. Having lived with it my entire life and dedicated most of my education and professional career to the disability, along with other developmental disorders, I confess that I still don’t believe I fully understand it. That being said, I feel I have no right to approach others, especially those willing to learn, with an adversarial attitude. We cannot judge others for things that they never had the opportunity to learn so I find the best way to approach self-advocacy is to meet people where they are with their incomplete, and often incorrect, knowledge of Autism and try to move together towards a deeper understanding of the disorder.

Beyond poetry, I give trainings and speeches as a part of my career. It is a hard balance to strike, being respected as a professional while also being trusted to represent the struggles of Autism. While some things are more difficult for me, I am still just as capable of achieving great things. I feel the best way to address the misconceptions surrounding Autism is to confront them. Through my poetry, I no longer feel apprehensive about naming these erroneous assumptions. I use creativity to defuse defensiveness that sometimes comes with being confronted by information contradicting what was once accepted as truth. The best example of this is in my poem, “I Am Autist,” which is read both top to bottom (describing how many assume Autistic people see themselves) and bottom to top (describing how I actually feel about being Autistic), and it goes like this:

I’m Autistic

It’s not hard to understand

I’m not going to sit here and tell you

That I love myself unconditionally

Don’t be surprised when I say

I would trade this part of myself

I don’t always have a lot of confidence

People view me a certain way

They don’t believe I can accomplish much

I refuse to accept that

I’m more than a disability

I live better when I believe

My limitations as set in stone

I was never one who liked to think of

Pushing out of my comfort zone

It seems silly not to try

Accepting that I am less than

Never

Think outside the box

You will see me

When you stop trying so hard

To understand me as any other person

I beg you, please

Just leave me be

I will never amount to much if you

Push me harder

When you have your doubts

I want to learn

But I can’t

You want me to be like you

It’s not fair

I see the world and me in it

Broken

I am not

A superhero

I am Autistic

(Read from bottom to top)

For so many, poetry is intimidating. While I’ve never felt this way, I can understand it because I often feel the same way about simple communication that others take for granted. The irony is not lost on me that I excel in a method of communication that baffles so many others while being endlessly baffled by the simplest methods of communication. I don’t use poetry in my advocacy intending to intimidate everyone, but I do believe that the initial apprehension many people feel when I announce I will be sharing a poem holds a mirror up to allow neurotypical people to see themselves in the kind of situation that I face every day. I hope that hearing or seeing my poetry will help people realize different forms of communication are nothing to be afraid of.

Even within the neurotypical population, there are so many different thought patterns and styles of thinking. These differences may be more distinct for Autistic people, but they are not unique to us. Dr. Temple Grandin, one of the most famous Autistic self-advocates, is known to think only in pictures, possessing no internal dialog. Others have only an internal dialog, without the ability to create mental pictures. While these two conditions are extreme, thought patterns vary in so many other ways. My brain often thinks in rhyme. Before I know the literal meaning of something, I may know two or three ways to express it metaphorically. When I write, I tend to have two settings: poetic and technical. You may have more of an analytical mind or maybe you think practically, in terms of steps you must take to reach your goal.

My goal in bringing poetry into my professional life, and especially my advocacy, is to unite both neurotypical and Autistic people. I got the opportunity to read a poem at Philadelphia City Hall, which was a great honor. After hearing me read “Measure Me” at an art show, a city counselor thought they understood Autism and developmental disability better. While I did explain some of my personal experiences as an Autistic person, I also presented an opportunity to create a partnership, to work together to make Philadelphia a more accommodating city for Autistic people and for Philadelphia to receive the full benefit of the unique strengths present in the Autistic population. The poem I wrote for this occasion is called “An Invitation” and it goes like this:

Come a little closer

Ask a question or two

Discover for yourself

I’m not so different from you

Do you remember being young?

When your joy would take hold

Your whole body would wiggle

When did that grow cold?

My joy still runs hot

You see me rock in my seat

Because I need a way

To burn off the heat

I don’t know if you realize

But I’m actually quite smart

I make good grades at school

And some call my poetry art

Looking off to the side

Helps me get what you mean

What you find in the eyes

Always remains for me unseen

I can force my gaze

To behave this way

But my chest then gets tight

And I lose what you say

Some think me like a child

With a doll still by my side

But wasn’t love like a child

Once a source of great pride?

The journey towards acceptance

Each generation longs to complete

Would be no struggle at all

If placed at the children’s feet

I have the heart of a child

But my mind has grown wise

This should make me an asset

Why does it come as a surprise?

It’s a feeling we all know

I want to be understood

But when I open my mouth

Things don’t come out as they should

I know you can relate

It’s the human condition

But we can ease the pain

We are in the perfect position