Chapter 4: Olivia's Education, Beginning of Soeren's Advocacy

16:25:13:15 - 16:26:55:05

Lisa: I wanted to ask you, Soeren, a little bit about Olivia in school. I wondered if she went to the same school as you and your sister Rachael and even now your sister Sofie.

Soeren: So Olivia has not gone to the same school as the rest of us. As a young child she went to a special education only pre-school and kindergarten where she was in an environment with inly special education teachers, only special education students. She then, in the town that I grew up with, our school districts, all of the school have at least a limited special education program but the majority of the resources both at the elementary level and high school level are concentrated in what might be two of the five schools or three of the five schools. So Olivia, who had a bit more demanding IEP, who needed support in the classroom, went to one of the schools that is, it's integrated in the sense that it has both general and special education but was in a self-contained classroom. So she went to those schools and then when she graduated from junior high she went to the high school across from the town that I grew up in and is over there. The school over there has a much larger special education program. They have a lot more resources than the school that I went to. So Olivia has always been in a separate education environment than the rest of us.

16:26:55:10 - 16:28:19:05

Lisa: Was it challenging for her socially in school?

Soeren: I think that it... I don't know if it was challenging for her socially. I think that the schools that she went to were, because they had this focus on special education, the students who were there were very accustomed to it. So for example she's in a high school now that has dozens, if not hundreds, of students who have an IEP within a school of a couple thousand. So the general student body is very accustomed to a student with cerebral palsy, is very accustomed to a student with autism who may express him or herself a little bit differently than the rest of the student body or special education students who have one on one aides walking through the hallway and it's something that that school does very well and I think a large part of it is because the student body is just presented with this is how high school looks and these are your peers and they're apart of the school community that we have. I don't think that my high school would have been nearly as welcoming because we didn't have that as a part of our school community to our detriment.

16:28:20:25 - 16:29:15:15

Lisa: Do you think that she feels a part of her school community? Are there activities in school that she participates in or?

Soeren: She does, I think, feel a part of her community at school. She wears her spirit t-shirts on Fridays when they have football games. She is involved in the art club there and does work with them, is very much a part of each one of her classrooms, and she wakes up looking forward to going to school. On Sunday she's looking forward to Monday. She loves getting on her bus, going to school, seeing her friends in her classroom who she's been peers with for a long time and I think that she gains a lot from her school environment.

16:29:17:25 - 16:30:43:25

Lisa: Does her circle of friends include people with and without disabilities?

Soeren: Her circle of friends certainly includes her classmates with disabilities. She has a number of peers who either have Down syndrome or fall in the autism spectrum who she's been friends with for a long time. She, in the last couple of years, has participated in some student peer to peer buddy programs within her school that has matched her up with general education students who have been great with her and who have done gym class with her or who have walked with her in the hallway. Olivia is a bit... she doesn't show a drive or a need for, at least one that understand through communicating, typical friend relationships. I don't know if she is satisfied with the social relationships within our house, within our family, or the exposure that she does get at school is enough but she does not have a lot of friendships with people without disabilities. She has not shown that to be something that really bothers her.

16:30:47:05 - 16:35:29:15

Lisa: I believe in 2007 while you were still in high school you made a speech about your sister and the use of the derogatory term "retarded". I'm wondering if you can tell me a little bit about that and whether or not that speech was in reaction to a specific incident.

Soeren: The, I love to talk about it; it was I think that speech percolated up from a lot of different things. I think that there was a frustration on my part with a school that wasn't particularly welcoming of people with intellectual disabilities perhaps because of the way it was divided within our school district. I think that by my senior year of high school I was getting better at recognizing how I was compartmentalizing my life and was looking for an opportunity to sort of express my whole experience within a school setting and was willing to sort of bring that to my peers, my friends, my teachers in a school setting. And as far as a particular event I think there were two of them. At my high school, which was a high school without a special education program, we did have a work... it was a life skills work class at what's now Olivia's high school where some of the students who were about 20 years old would go to work study programs in the afternoon. So some of the students from her high school would come over to ours and work with our custodial staff and they would do things like wash the windows or empty the trash cans and shadow some of the custodial staff to learn the skills of doing things on time, being task oriented, things like that, which I think is incredibly valuable. Unfortunately because my school was not very welcoming of people with intellectual disabilities, you would see them in the hallway and just listen to what these other high school students would have to say to them and the names that they would call them, the things that they would say were awful and I remember something clicking when I was a high school student. I said to myself in seven or eight years that's Olivia washing the window if I'm lucky. If Olivia is able to grow to a point where she can be competent in that task that's going to be a huge achievement for her and something I'm going to be really proud of and then I have to have these 17 year olds walk by her and call her all these nasty things. So that's when some of the walls between the different parts of my life came down. And then the other thing that prompted it, I had a English teacher who when we were in the classroom one day doing group work and one of the students in my class used the phrase "That's so retarded" just in conversation and my English teacher stood up and asked her to leave the room and told her there wasn't anything more offensive that she could have said. And I went up to him afterwards and asked what prompted that and he opened up and said he had a sister with intellectual disabilities and growing up it was something he struggled with as well and was just on pins and needles when people use that word because it really struck home to how people had treated his sister. So I told him it was something that was on my mind as well and we worked together for a couple of months coming up with how is it that we can make the point of bringing either a conversation to or awareness to how people treat those with intellectual disabilities and bring it to a point where people can relate to it and people can learn from the opportunities that I've had with Olivia and go on to have a, what I think, is a richer understanding what the human experience is. So those were some of the prompts behind it.

16:35:32:05 - 16:37:06:15

Lisa: Were you worried prior to giving to the speech that the student body would react in a negative way that you would receive any kind of backlash?

Soeren: I was very nervous. I... on the one hand I was very nervous. On the other hand I was graduating in a month or two and I was comfortable having sailing out even under social duress. I was nervous that people would react poorly. I think that in the, in what I wrote, I drew a lot of connections between the prejudices and social injustice that we put on people with disabilities parallels to racism and to sexism to other forms of discrimination and I could see, you know, the audience. There were 15 year olds in the audience and seeing someone like that not quite connect all the dots and getting hung up on what I was using as analogies, that was a concern of mine and then another concern was other people saying this isn't important to me. Maybe it's interesting that someone is up there talking about this but it has no effect on me. I'm not particularly concerned about his sister and I'm going to go on treating people with intellectual disabilities this way. So I think that the both the backlash and the apathy were concerns of mine.

16:37:07:05 - 16:37:59:06

Lisa: Is that what you experienced after giving the speech?

Soeren: No, not at all. To my school's credit, to my classmate's credit, people got it. People understood it and I think that there's been some change in that community flowing from that. I think that it has become something that teachers think about when they discuss whether it's bullying in the classroom, whether it's the use of language and how words impact other people and how our choice of words impact other people, whether it's just a baseline decency in the classroom or in the hallways. I think that it's affected that school and because of a set of circumstances that led to someone filming it it's had the opportunity to affect other schools as well.

16:37:59:10 - 16:39:51:03

Lisa: Well I was going to ask you about that. Someone did videotape it, they posted it on YouTube and it went viral and tell me what that was like.

Soeren: So it was a friend of ours filmed it so that my mom, who had to get Olivia off of the bus and couldn't be there. My dad was at work and couldn't be there either. So we filmed it so that they could see it and then we then put it up on YouTube which was new back then and we put it up on YouTube it so my grandparents could see it and then my mom shared the link with Olivia's teacher who then shared the link with two of her special education colleagues who then shared it with two of theirs who then shared it with two of theirs and then within a couple of weeks we looked and all of a sudden it's got thousands of people who have seen it and then we had... there was a broadcast journalist in Chicago who has a brother with a disability who was interested in writing; putting together a story on it. So we had the news crews come in and there were different advocacy groups like the ARC of Illinois who found it who asked me to be a part of their advocacy efforts that took me to Springfield, to the Illinois capital, to talk to the Illinois state senate on the issue and then it just snowballed from there into other groups like the special Olympics finding it, figuring out how it fit with their goals, their engagement strategies, with their advocacy efforts, and ultimately how they wanted to engage young people. Not only in the volunteerism of something like Special Olympics or Best Buddies but also in the larger disability issues that surround that volunteerism.

16:39:51:05 - 16:41:06:25

Lisa: Were you aware when you made your speech that was sort of an ongoing dialogue at least within the disability community about the use of the term mental retardation?

Soeren: I wasn't and it was a breath of fresh air when it was over and I started to hear some of the reaction. To see that it did fit in with what other people were thinking and to see that my... my issues with the treatment with intellectual disabilities resonated with other people across the country and around the world and I was excited to be able to fit in even in a very small slice of the wider disability movement and to echo what other people had or to put a slightly different take on what other people had raised and to be a part of this broader conversation around how we talk to people with intellectual disabilities, how we have conversations with them, how we label them, the derisive effects of labels that we have, and ultimately how we can have a more open and accessible society.