Upstream Arts Program Director Matt Guidry, sporting his disability is not a four-letter word T-shirt

Upstream Arts Artistic Director Matt Guidry (notice our new disability is not a four-letter word T-shirts!)


NOTE: There was a theory that originated in the 70s called the 100th Monkey Effect, which leads to the idea that evolutions in thought and behavior can be exhibited at the same time by groups of people who have had no contact with each other, without any prior communication or point of contact for a transfer of knowledge to occur. It has been called collective unconscious, source fields, and morphogenetic fields. If a critical mass of people thinks and behaves in a certain way, others nearby will begin to exhibit the same behaviors and thought…and, it eventually becomes the intuitive behavior for the society at large. It’s an energy thing. It would support the idea that discoveries/inventions such as fire or the wheel or the telephone happen(ed) at different places over the globe by different people at the same time without any direct communication link. It’s a theory that has been debunked by many over the years.

Here at Upstream Arts, we’ve been having an internal dialogue for some time now about helping our mainstream and disability communities re-imagine their interactions and relationships. The manifestation of our discussions recently resulted in our disability is not a four-letter word campaign (find out more about that here). The title of the campaign came to us after the countless times that we have been struck by the negative outlook many people still have when they consider the quality of life for an individual with disabilities, when they hear the word disability, or when they unexpectedly encounter someone with a disability in their communities. Envisioning the hardship and having pity are two extremely common reactions we’ve seen in our work as teachers, advocates, and as parents of a child with very obvious disabilities.

From my perspective as a parent, I would never deny that there is a certain level of struggle when you are raising a child with what most people would consider pretty heavy medical issues, who also lacks verbal communication and has only one hand. But that’s not what I want people to see when they meet Caleb. I want them to see him for the person he is, not for the disabilities he has. Disability is not a 4-letter word. Disability does not impair the individual to develop a fully rounded personality just like you and me.


Matt and Caleb at the first ever Upstream Arts Annual Meeting and Fundraiser

Matt and Caleb at the first ever Upstream Arts Annual Meeting and Fundraiser


And, I don’t consider myself a special parent for raising a child with disabilities. I feel like a successful parent because I’ve raised a good kid (or, young man, as that’s what he is now… but he’s always your kid, right?).

Disability is not a four-letter word. Caleb’s disabilities did not deter us from forming a personal bond as father and son that is no different than the relationship I have with my 7-year old daughter.

(By the way, in 7 years of parenting an average/typical/developmentally-appropriate-with-ten-fingers-and-ten-toes daughter, there have been struggles galore. At times they seem just as dramatic in my mind. Sometimes it’s all perspective.)

Assume ability. It’s the original Upstream Arts motto that is the seed for the many ways we do our work and engage with our community. In some respect, it means that we move into every individual relationship looking for the personality, the personal relationship, without letting the disability (visible or invisible) get in the way.

Upstream Arts is not alone in the effort being put forth to change our behaviors and move the conversation forward. As soon as we decided to start communicating our thoughts to the public, we have been bombarded with evidence of others trying to do exactly the same thing. Among the many examples we’ve come across on the world wide interweb, my favorite is the End the Awkward public service announcements. It came out of Britain as a reaction to a survey, in which 67% of people polled said that they felt uncomfortable talking to someone with a disability. 67%!!! Check out the clever videos here. Then there’s the TED Talk I’m not your inspiration, thank you very much, by Stella Young, that is absolutely fabulous. Ever heard of “inspiration porn”? Check that one out here.

And, it seems the movement is not only happening on this side of the globe. This past spring, Upstream Arts was honored to be visited by a small group of professionals from the People’s Republic of China, all of whom work in some form or fashion at the intersection of arts and disability. There was a performing artist, a media personality, and an administrator of a school, among others. They were visiting the U.S. through a program called “Performing Arts and Disability Awareness,” which is part of the Creative Arts Exchange program sponsored by the Cultural Programs Division of the Office of Citizen Exchanges in the Bureau of Educational and Cultural Affairs at the U.S. Department of State (that’s a long way to say it was a government-sponsored visit).


Upstream Arts Staff with the visiting delegation from China

Upstream Arts Staff with the visiting delegation at our office


From what we could gather, they were in the U.S. visiting a few different cities to meet with organizations, like Upstream Arts, that connect and integrate the arts within the disability community. After they watched a class of ours, we were able to sit down with them and exchange stories. Speaking through an interpreter, we had incredibly rich, interesting, and sometimes perplexing conversations (perplexing due to the language and cultural difference). Did you know that, in China, it is considered a compliment if someone tells a married couple that they look alike, you know, like brother and sister? Yes, when that came out of the interpreter’s mouth, we too had a confused reaction that was difficult to mask. Turns out, it means that your hearts have grown together and you are now truly family. A lovely sentiment.

Some of the stories we heard from them made us feel that, in some ways, they were ahead of our culture in terms of truly integrating individuals with disabilities into mainstream society. We got the mental picture that maybe individuals with disabilities were simply more visible to the public. The artist, for instance, showed us a video of a dance performance by some of the youth with disabilities he works with that was part of a celebration broadcast on national TV (something I can’t imagine happening in the U.S.). Not all of what we heard from them was as forward thinking as this example, but the entire experience left us feeling hopeful that the movement we’re experiencing in our part of the world is happening everywhere. It was clear that all the members of this delegation were doing their work with the same mindset that we are.


UA Program Director Matt Guidry with members of the delegation from China

Matt and members of the delegation sharing work through video


And that’s the crux of it. It is a mindset. It’s an attitude, not a program. It’s an approach, not a thing. The vehicle is the use of artistic and creative practice to bridge the gap of understanding and engagement, to propel the conversation of our commonalities forward into a new age, and to give volume to voices that have for too long remained outside of the mainstream.

What strikes us about making these connections is that the thought behind these new messages coming from the disability community are simultaneously separate and cohesive.

Now, go up and re-read the note at the top of the blog about the 100th Monkey Effect.

I’m just sayin’.

In my experience, one thing you can sometimes feel if you exist as part of the disability community – whether as an individual with a disability, or a family member, or a teacher in a Special Education classroom, or a host of other community service providers – is a sense of isolation. Take Special Education programs within a larger school community as one example. Many Special Ed classrooms are still tucked away in the basement of the school or off in their own wing of the building. And within those classrooms, each student has unique abilities and unique goals and unique educational plans and unique communication methods. When we first started doing our work, I was struck by the fact that many teachers told us that they rarely had a chance to do anything with their students as a group, and that by providing that kind of group engagement, Upstream Arts is providing a rich learning experience they don’t normally get. Since the beginning, part of the work we do every day is to bring everyone within the small community of a classroom, or an adult day program, or a community center together to re-imagine how they can collaborate, across abilities, to make beautifully creative moments, and these experiences have the potential to impact the daily interactions of all community members.

Matt Guidry
Co-Founder and Artistic Director
Upstream Arts

P.S. Click here to read “Inclusive Connections, Part I”!