The ever-insightful artist Phil Colins once wrote and sang, “In learning you will teach, and in teaching you will learn.”  These words have been echoing through my ears more regularly since I began teaching Upstream Arts’ new Self-Advocacy classes.

My older brother, Joe, has a developmental disability. He lives with our mother and uncle in the suburbs of Saint Paul, and recently got a hot tub that he is very proud of. He enjoys bowling, gardening, visual arts, and several daytime soap operas. 

As his little sister, like most siblings, sometimes I’m a great sister, and sometimes I’m not. Some of this is typical to sibling relationships, but, if I’m honest, some of it is me not fully engaging with my brother’s right to make his own choices. There’s a tendency I think within families to think we are always acting in each other’s best interests, and when it comes to my brother, I think we tend to assume a lot about him, his interests, and decisions he will make. The past year and a half of teaching in community with Upstream Arts self-advocates has taught me a lot about how to better support and encourage my brother’s self-advocacy.

The biggest question I ask myself is: Am I taking short cuts with my support of Joe’s right to choose in favor of my own convenience?  It’s an important and often revealing question. I offer this small but regularly occurring scenario we have together:

When we go to a restaurant, I often think, “Oh they have ribs. Joe loves ribs.” I tell him, “Hey they have ribs!” Joe orders ribs.

As small as this moment is, and even though Joe does indeed enjoy eating ribs, there is no choice in this interaction between us. Joe struggles with reading, so he is often dependent on us to let him know what his options are on a menu. It takes time and patience to let him know what the restaurant has, and sometimes, if I rush through it, he gets overwhelmed by my speed. I often avoid this option, justifying MY choice by the overwhelm he may experience. So, I limit what I read to him by the food I already know he’ll like, because, on the flip side, I could take the time to read him all his options and he’ll just end up ordering ribs, the thing “I knew” he’d probably order. Generally, there is a sense of “This can’t take too much time” because… (insert justification here). We’re in a public place and there’s a line behind us, I don’t want to inconvenience the server and take up too much of their time, we have to be somewhere after this, etc, etc, etc. Essentially, the convenience of everyone is considered more than my brother’s right to choose.

As small as this moment is, it’s a true moment of opportunity to practice self-advocacy and listening. If I can’t support and listen to him in these smaller moments that offer him a chance to practice making his own choices, can I really expect him to feel supported in larger moments of greater choice, such as where to live, what job he may want, how he wants to spend his money? His self-advocacy is not just based on his ability to speak up for himself, as a member of his support system, it’s equally important that I actually listen to what he’s saying and that takes practice on my part. I often take my right to choose for granted, and don’t realize how often Joe’s right to choose had been bypassed.

Will it take time to go through the menu with him? Yes, but I’m already looking at it to make my choice and just because I can make mine “faster” than him shouldn’t deny him the opportunity to express his choice. Will he always want the same kind of food at a restaurant? I love pasta but I don’t always order it if it’s on the menu. Assuming Joe will always eat ribs is limiting and doesn’t make space for him to try something new if he wants to. Could he get overwhelmed with a lot of choices? Yes! We ALL experience overwhelm – it’s a natural feeling and not something I need to protect my brother from. Feelings of overwhelm are another opportunity to practice: taking a breath, taking a break, thinking of a more creative way to explore the menu, etc.

I offer my experience and these thoughts to the people who support self-advocates with disabilities. How often do YOU practice listening? How do you slow down to make sure you completely engage with your self-advocate’s choices? Where are you cutting corners on your self-advocate’s right to choose? None of us are going to be perfect 100% of the time, but the more intentional we are in our practice of listening and support, the more empowered our self-advocates can feel in just being themselves and taking risks to try new things. Perhaps they’ll surprise us, and more importantly, surprise themselves.

Cristina Castro
Teaching Artist &
Self Advocacy Program Lead