Video highlight reel from Upstream Arts’ late 2020/early 2021 online classes for and with adults with disabilities.

July 1st, 2021 marked the first day of Upstream Arts’ 16th year of practice, and the first major initiative we sent forth into the community was a series of classes focused on Self-Advocacy for individuals with disabilities (watch for round two starting in October!). It seems fitting, because after nearly a year and a half of pandemic life, many of us are re-thinking the nature of our pre-pandemic selves, lives, thoughts, ideas, and assumptions, in hopes of re-imagining our inner life anew in a better, brighter light. We’re looking for some self-realization.

Here is a great definition of self-realization that I just found: fulfillment by oneself of the possibilities of one’s character or personality

I love definitions. Definitions guide me towards the meaning that has been ascribed to a word, or, they propel me off in a different direction to discover my own.  Julie and I didn’t begin the journey of Upstream Arts with a definition of what we wanted to teach, but instead with a desire to explore with and alongside people with and without disabilities the ways in which we express ourselves and connect with others, and we wanted to do this through an artistic practice. We had direct evidence that it works. We had personally experienced the power of the language of dance and movement to completely transform the expressions and interactions of our son, Caleb. To say that dance opened a door that had previously been closed is no hyperbole. With Upstream Arts, we made a calculated guess that others, too, might find some usefulness in the same kind of practice.

After 15 years of exploration, the most comfortable educational definition that we find our teachings ascribed to is Social Emotional Learning (SEL), where, when you search for a definition, you find a trio of terms that include self-awareness, social awareness, and social interactions

Who am I? 

What are the ways in which I am most comfortable expressing myself? What impact do my actions have on others?

What are the ways that I, uniquely, improvise my way through the world?

That seems like a fairly accurate account of the avenues and tributaries of exploration within an Upstream class. 

When we look at Self-Advocacy, we find the definition summed up with phrases like: 

Speaking up for one’s views and interests.

Telling people what you need.

Making your own life decisions.

Taking action to create change in one’s life.

This definition, as with the general tendencies of thought towards the goals of Self-Advocacy, leans towards the ability to live an independent life (by definition, not depending on others). Independent living is often identified as the ambition for individuals in the disability community. How many of us truly live independent lives, though? We live within a social structure in which we are dependent on others for many things, whether it’s growing and producing the food we put on our tables or picking up our garbage, recyclables, and organics that we put in the containers in the alley every day. We don’t even know how that food gets to our tables or where our leftover bags and containers and scraps end up.

Since the beginning of our Self-Advocacy classes in early July, we have been examining the expressions of the community, the individuals in our classes, to help us expand the characterization of Self-Advocacy to include more than just the ability to make one’s own life decisions, or take action to create change in one’s life. What has been shared into the class space thus far gives a clear indication of where there are gaps in the discussions about Self-Advocacy: 

I’m tired of the constant need to educate people on the things they don’t understand. 

I want support staff to have a better understanding of me.

It feels like a job to teach you about me.

I want support staff to remember my goals, and validate my feelings.

Together we are uncovering the next level of Self-Advocacy; negotiating personal relationships, maintaining balance in relationships, nurturing relationships, and holding people accountable. 

Expressing what we need out of the relationships in our lives is something with which many of us struggle. We all need to continually practice the things that build healthy relationships. We all need to commit to a communal, interdependent responsibility towards advocacy. This is something that I have felt and experienced for the last 30 years, because in order for Caleb to move through the world smoothly, in order for him to feel truly welcomed, in order for him to be a Self-Advocate, the community around him must put some effort into the practice as well.

To say that people with disabilities should have the opportunity to live an independent life is a misnomer. It’s more exact to say that we all need the opportunity to live interdependent lives. What would result if all of us were to move through life with this in mind, if everyone was a great Self-Advocate? We would have a deeper understanding of one another, and we would discover more common denominators.

Advocacy means showing up and behaving in a way that projects to the world the reality in which you want to live. That’s the practice Upstream Arts will continue to…well, to practice. 

I’ll end with an invitation to take one small action today, have one small interaction with someone as if the world worked the way many of us dream it would, with compassion and curiosity for everyone in our community. Whenever and where ever we are able to express ourselves authentically and creatively, we challenge the status quo.

(Self) Advocacy is an art. Art is advocacy. 

Keep listening, keep connecting, and keep practicing being creative,

Matt Guidry 



Read more of Matt’s In Small Moments here.