Chapter 5: Spread the Word Campaign

16:41:14:20 - 16:43:55:10

Lisa: Soeren you mentioned that video of your speech drew the attention of folks at the Special Olympics organization. I know that you did some summer internships with them and I'm wondering were they the sort of typical get coffee, file papers, answer phones type of internship?

Soeren: No they weren't. I think that some of them started with a bit more administrative responsibilities but I had the opportunity to work in an environment that let me explore what my interests were within their office and I was able to collaborate with another intern who was there named Tim and the two of us had a strong interest in the Special Olympics sort of nascent footsteps into the conversation around the words of retard and retarded and we thought that we could put together a more engaging, more youth led, more grass roots activism campaign and we, over the summers, we sat down and designed that in addition to a college university outreach engagement program and we, as I said, I was very, very lucky to work in a supportive environment that said if you can convince us that it will work we will put resources behind it and we will put it out there. And we set it out, let our baby bird fly, and people latched on to it and I think it speaks to the resonance that it has with so many people. I think that so many people are, whether they're siblings, whether they're mothers, fathers, peers, special educators, general educators; are so frustrated with how people with intellectual disabilities are treated especially in a day, for a number for reasons, when we are able to see more and more of the benefit that they bring whether it's in the classroom, whether it's to a community and to see that benefit squelched by prejudice, by discrimination really puts fire in a lot of people's bellies and we were just excited to be able to give some structure, some platform to let other people's passion start to change their own sphere of influence whether that's in elementary school, whether that's a high school, whether that's a university campus or a community.

16:43:56:05 - 16:46:24:00

Lisa: Tell me the name of the campaign.

Soeren: So the name of the campaign is... there's a little bit of a story. When we started with Special Olympics in 2007 we came out with the campaign to ban the R word and it was, as it sounds, it was an effort that had tones of censorship in it, that had tones of almost Orwellian thought police in it and drew, rightfully so, drew a fair bit of negative feedback from people who said it's not worthwhile to try to censor peoples language or to try to ban a word or erase words. Something comes right in to fill the void and none of the underlying emotions, prejudice, misconceptions are addressed when you just take out an eraser. So when we started to receive that feedback Tim and I sat down and we said you know, maybe instead of just taking something out we need to put something in as well and we came up with a 2.0 version of it that we term spread the word to end the word and we have, from there, been much more focused on local efforts and enabling local champions of this idea to bring it to their either college campuses, to bring it to a high school classroom and do it in an educational way. We're not challenging anyone's right to be a bully or right to be mean or even right to hate. We... but we feel if we're able to put out there how much pain the word causes, both to people with intellectual disabilities and ultimately in the way it limits our world view, people without intellectual disabilities as well. We cut off people with intellectual disabilities from the rest of society but we also cut off the rest of society from people with intellectual disabilities. So we see it as definitely a two way-street of inflicted and self-inflicted wounds so we bring a spirit of education to it and we hope that we change a lot of people's minds. We hope that a lot of people's minds are changed when they become a part of it.

16:46:27:05 - 16:48:34:25

Lisa: Can you describe maybe what a typical day of action would look like on a college campus for the campaign?

Soeren: Sure, so we see ourselves as starting a conversation and being sort of a first step towards self- transformation. So we, on college campuses, we will have a local leader, typically a student, who will create a banner and on the banner it might say "As a member of the Temple community, as a member of the Notre Dame community I pledge to end my own hurtful use of the words retard and retarded" and it will sort of say that in simple black letters of the middle of this banner and people throughout the day, when they walk by, are given the opportunity to take a marker and sign it and that's what we do. We collect pledges and people walk away from it and then the conversations start. We encourage people to write in letters to the editor of their school newspapers and we see conversations flow from that and the end of it we have all of these banners from different communities saying how they're willing to reconsider the language that they use referring to people with intellectual disabilities and we've also seen, I wish I had data, but at least anecdotally we've also seen a number of people who walk by these sort of banners , start the conversation, and then will go out and volunteer with something like Special Olympics or will go out and become a part of local disability activity so we see it as a gateway to those other opportunities as well as just a first step towards transforming how people look at the issues and giving even more of a legitimacy towards the issue around language and specifically how it relates to people with intellectual disabilities.

16:48:35:05 - 16:49:08:00

Lisa: Do you have any sense of how many people have taken the pledge thus far?

Soeren: We have so we collect pledges online through our website www.r-word.org and on our website we've, since 2009, when we sort of launched this 2.0 version we've collected about 300,000 and as I mentioned we also collect hand written pledges as well as verbal pledges and with those included we're around 12 million in the United States and in countries around the world.

16:49:10:05 - 16:51:37:10

Lisa: It's obviously hurtful to use a word like retarded but I'm wondering if there is something deeper, something more than just hurt feelings. Does the use of word retarded make people vulnerable in other ways than just hurt feelings?

Soeren: I think that it does. I think that when we use language that dehumanizes it enables us to treat people as less than human beings and when we come to understand other people as less than human beings we're... we don't stop ourselves from treating them that way and doing things like institutionalizing or doing things like social isolation. When we recognize baseline humanity in people we treat them with a baseline respect. So I think that it has, I think the language that we use and the social perception that we have of people with intellectual disabilities has enormous effects on people with intellectual disabilities. A number of people have come to me and said when someone calls me a retard it makes me feel like I'm less than human and not only the social emotional effects on people with intellectual disabilities but having that leads the rest of us to act without regret and without a full understanding of their human experience. And then on the flip side I think that it walls the rest of us off. When someone is comfortable using language like that it keeps people with intellectual disabilities away. It allows them to construct a wall between us and them and it, I think it very much limits what their own human experience can be like. I think that people with intellectual disabilities bring a difference in perspective that adds a richness to both the conversations we have as a society but also the human experience that the rest of us have as an society. So I think that language really in the end disables us from a very rewarding dimension of the human experience.

16:51:38:20 - 16:53:15:25

Lisa: The Spread the Word campaign certainly made it not only sort of in the local conversations but also nationally. It was very, as you well know, it was really the use of the word, of the R word, was being contested all through mainstream media. Anything from the Peirce Morgan show to Bill Maher to Colbert Report, the list goes on. What do you think that kind of nationally visibility helped the campaign accomplish?

Soeren: I think that again so much of our goal is starting the conversation so if we're lucky enough to have programming on a student campus that's one way to start a conversation but if we're not and they go home at 10:30 pm and turn on the Colbert Report and it's a topic of conversation on that then they can turn to their roommates and say what do you think of this? Do you think that this is something worthwhile? I wonder why other people think this is worthwhile and the can begin to have that talk. So we think that type of national media exposure is great to start those conversations. We've also had great local media coverage which has really put a spotlight on a number of our local champions, many of them self-advocates and we love to see that as giving a role model for other people to look to, whether they're self-advocates or advocates without disabilities and we've been lucky to have a number of those types of champions with our movement.

16:53:16:10 - 16:54:32:05

Lisa: In 2010 Rosa's Law passed and you and some of your Special Olympics' friends and colleagues were invited to the White House, I believe, by President Obama.

Soeren: That's right.

Lisa: To celebrate the enactment of the legislation. Do you think the spread the word campaign contributed to the passage of that law?

Soeren: I think perhaps indirectly. There were a number of... there was a particular family in Maryland; the family of Rosa, who worked with their state representatives to bring this issue to congress. We hope that we contributed by helping bring the issue to some sort of national consciousness that it's something that we'll be able to fly straight through congress. We certainly don't take credit for it. We lauded it. We're very excited to have it. We think that a change in the sort of the sacred text of our law is one step. It's certainly not the final step but we've also seen a large number of states within the last three-four years amend their own state statutes to adjust to the language that we look for.

16:54:33:20 - 16:56:30:00

Lisa: What has all of this process taught you about citizen advocacy?

Soeren: I think that it's taught me a couple of things. I think that one is the value of a bottom-up approach and realizing that I can't change a middle school in Topeka, Kansas but I can enable a champion within a middle school in Topeka, Kansas to improve, to positively affect his or her own sphere of influence. So developing that network of individual advocates is something we see as much more valuable than taking a heavy handed top down approach and then I think that we've seen and something that I love to see is the value of self-advocacy and recognizing that I can get up on a stage or my co-founder Tim can get up on a stage or any one of our thousands of champions can get up on a stage and speak to our own experience but for whatever reason and I'm still trying to get my head all the way around it, one of our self-advocates gets on stage and describes what his or her experience was, what this... what his or her social treatment has done to him or her; it resonates on just an entirely different level and it's something that I admire. It's something that I try to emulate but we're still trying to bottle whatever it is that they bring and we're just so lucky to have them be, all of our self-advocates, be a part of what we do and lead, in many ways, what we do.

16:56:40:15 - 16:57:56:05

Lisa: Soeren, your high school speech about Olivia certainly took you to unexpected places I think is fair to say, was Olivia able to understand what you were doing and how she inspired your work?

Soeren: I think that Olivia appreciated being on the news when the newscasters came to our house and did a piece. She loved to see herself on television. I think that it's, again, it's a challenge that I face in being able to understand what it is that she's communicating to me. I, deep down, I believe that she understands it and she... I hope appreciates it. I hope she is not yet satisfied by it and she continues to be a part of what drives me, what drives the things that I have worked on, the people that I work with, and I hope to get better and better at understanding at how she communicates and be able to have that conversation with her; one that she may have already tried to have with me.