Chapter 1: Background

18:33:06:15 - 18:33:31:04

Lisa: My name is Lisa Sonneborn and I am interviewing Jackie and Sami Csaniz here at Temple University on May 24, 2013 and also present is videographer Lindsey Martin and our videographer Ginger Jolly and Jackie and Sami, do I have your permission to begin our interview.

Sami: Mm-hmm.

Lisa: Jackie is it okay to start our interview?

Sami: Mm-hmm.

Lisa: Great. Thank you very much.

18:33:31:10 - 18:33:47:00

Lisa: I'm going to start with an easy question. Can each of you, starting with Jackie, tell me your name and how old you are?

Jackie: Jackie Csaniz; 27.

Sami: My name is Samantha Csaniz and I'm 26.

18:33:47:10 - 18:34:01:20

Lisa: And can each, can you tell me what your relationship is to each other? How do you know each other?

Jackie: I know Samantha since a baby.

Sami: No, what are we? Are we brother and sister?

Jackie: Sister.

Sami: Sisters.

18:34:03:10 - 18:34:09:20

Lisa: Jackie and Sami where do you both live?

Jackie: Springfield.

Sami: Springfield, PA.

18:34:10:10 - 18:34:25:10

Lisa: And can you tell me a little bit about the members of your family?

Jackie: I have a mom, Max, Katie, and daddy.

Sami: Our mom, dad, Katie and our dog Max.

18:34:26:05 - 18:34:34:10

Lisa: And you all live together?

Jackie: Yes.

Sami: Yep, one big happy family.

18:34:35:20 - 18:34:57:25

Lisa: Jackie, can you tell me what it's like having two younger sisters?

Jackie: Um, I like Sami and Katie best sister.

Sami: What's it like though? Are we a pain?

Jackie: No.

Sami: No? We don't bug you.

Jackie: No. It's fine.

Sami: We're fine?

18:34:59:20 - 18:36:12:25

Lisa: Um, in what ways, Sami and Jackie, do you two think you're alike as sisters or are you alike at all?

Jackie: Mm-hmm.

Sami: How are we alike?

Jackie: Different.

Sami: No, what are we... how are we alike? What do we like to do that's the same thing?

Jackie: Swimming.

Sami: Swimming, what else?

Jackie: Baseball.

Sami: Mm-hmm.

Jackie: And field hockey.

Sami: Those are the things you do. What do we do together?

Jackie: Go swimming.

Sami: And?

Jackie: Eat.

Sami: And? What do we do on Tuesdays and Thursday nights?

Jackie: Kickboxing.

Sami: We like to go to kickboxing. We like to listen to the same kind of music. I'm guilty of listening to Hannah Montana, Miley Cyrus, Justin Bieber, um...

Lisa: Taylor Swift?

Sami: Taylor Swift too, yeah.

Jackie: Mm-Hmm.

Sami: Um, I think that's pretty much it.

18:36:15:00 - 18:36:36:15

Lisa: Are there ways that you are very different from each other?

Sami: How are we different?

Jackie: Our hair.

Sami: We have different color hair she said. How else? Is that it?

Jackie: Mmm hmm.

18:36:39:00 - 18:37:31:15

Lisa: Jackie, you were born with Down syndrome. Are you the only member of your family who has a disability?

Jackie: Mm-hmm.

Lisa: What is that like? Do you and your family talk about your disability?

Jackie: Yeah.

18:37:35:25 - 18:38:57:25

Jackie: I'm going to ask a little bit about growing up together, growing up with your sisters and your mom and your dad and I think you had a dog when you were growing up.

Jackie: Yeah.

Lisa: Named? What was your dog's name?

Jackie: Charlotte.

Sami: No, what's the dog's name?

Jackie: Max.

Sami: No.

Lisa: Well you have Max now and when you were growing up you had a dog.

Jackie: Martha.

Lisa: Martha, right. So I'm going to ask you a little bit about growing up. Um did you all play together as children when you were growing up?

Jackie: Mm-hmm.

Lisa: What kind of games did you play when you were all playing together?

Jackie: Um, Martha and my...

Sami: No Jac, what kind of games did we play when we were little? Are you listening to what she's asking you? What kind of games did we play?

Jackie: Toys.

Sami: What kind of toys? What kind of, did we play any card games?

Jackie: The penny game.

Sami: The penny game, this game that my mom like invented. She would always have cards at her house with her sisters and she always wanted to play with them so then they invented this penny game where you like roll a dice. I don't really know how to play it.

Jackie: We play second...

Sami: Oh whenever you roll a seven you have to put a penny in.

18:38:59:10 - 18:40:11:05

Lisa: Did you enjoy playing that game Jackie?

Jackie: Yes, I liked it.

Sami: What other games did we play?

Jackie: Checkers.

Sami: Checkers.

Jackie: Uno Attack.

Sami: Did we play school?

Jackie: Yeah.

Sami: House?

Jackie: Mm-hmm.

Sami: What else?

Jackie: Uno attack.

Sami: Uno?

Jackie: Attack.

Sami: Uno attack?

Jackie: Yeah.

Sami: What else did we play?

Jackie: Checkers.

Sami: Did we have dolls?

Jackie: No.

Sami: We didn't have dolls?

Jackie: Oh yeah.

Sami: Did we have Barbies?

Jackie: Yep.

Sami: Did we play video games?

Jackie: Yep.

Sami: What else did we play? Did we play outside?

Jackie: Yep.

Sami: On the swing set?

Jackie: Yep.

Sami: What was that thing we had when we were little? Remember that big round thing? We used to jump on it.

Jackie: Jump?

Sami: No. What was it? You remember. Remember we used to jump on it and then it snowed and it broke.

Jackie: My...

Sami: Tramp....

Jackie: Trampoline.

Sami: Trampoline.

Sami: Did we used to go to the pool a lot?

Jackie: Yeah.

18:40:12:00 - 18:40:54:25

Lisa: Would you play with kids in the neighborhood or mostly just your sisters?

Jackie: Uh, my best friend Lauren.

Sami: Your best friend Lauren?

Jackie: Yeah.

Sami: Did we play with kids in the neighborhood?

Jackie: No.

Sami: We didn't?

Jackie: Oh yeah, yes. Amy.

Sami: Mm-hmm and who lives next door?

Jackie: Debbie

Sami: No who used to live next door to us?

Jackie: Oh yeah, Laura...

Sami: Our neighbor Laura. Did we play with any other kids?

Jackie: My friends.

Sami: You played with your friends.

18:41:17:15 - 18:42:20:10

Lisa: So we were talking about um playing with kids in the neighborhood and we're looking at some photo albums from when you guys were little. There's a picture there of you guys in the snow. Do you remember playing outside in your neighborhood on snowy days?

Jackie: Yes at Tom and Doreen's house.

Sami: At our neighbor's house, Tom and Doreen.

Lisa: What would you guys do when you were playing out in the snow? What kinds of things would you do?

Jackie: Snowball fights.

Sami: Snowball fight. What else? What did we used to make a lot?

Jackie: Snowman.

Sami: And remember we would lay down and put our arms out like this? What was that?

Jackie: Angel.

Sami: Snow angel. Remember that one time, what did Laura make? We crawled through it.

Jackie: Uh...

Sami: It was like an igloo.

Jackie: Oh igloo.

Sami: She made a tunnel because we had so much snow so she like dug down a tunnel. I was too afraid to go in it. I'm like claustrophobic but yeah.

18:42:21:05 - 18:42:51:05

Lisa: And what about, I'm trying to think of other kind of fun things that kids do in the neighborhoods growing up. Like Halloween, is Halloween a holiday you enjoyed with your family?

Jackie: Yeah with Sam and Katie.

Sami: What did we do on Halloween?

Jackie: Trick or Treat.

Sami: Did we get a lot of candy?

Jackie: Yeah.

Sami: Did you eat it all that night?

Jackie: No. I was...

Sami: Yeah right. You ate it all.

Jackie: No! I saved... saved it for Daddy.

Sami: Oh. Saved it for Daddy.

18:42:51:15 - 18:43:17:00

Lisa: You have a picture of Halloween in your book. Can you tell me about your costumes and when you were all going out trick or treating?

Jackie: I was a hippie.

Sami: You were a hippie.

Jackie: Yes.

Sami: What am I?

Jackie: Igloo.

Sami: Igloo? No that's Cleopatra.

Jackie: Yeah Cleopatra and Katie was Lion King.

Sami: Katie was Lion King? I think she's a tiger.

Jackie: Yeah, tiger.

18:43:18:05 - 18:43:48:00

Lisa: Do you remember some of your favorite Halloween costumes?

Jackie: Mm-hmm.

Lisa: Can you tell me what one of them was?

Jackie: Hippie.

Lisa: A hippie?

Jackie: Yeah.

Sami: What were you one year? Remember you had the blond wig on, the long blond wig?

Jackie: Oh, witch.

Sami: Witch? No. Remember? You had the long blonde wig. You used to love that show.

Jackie: I don't know.

Sami: You know. You were a pop star.

Jackie: Taylor.

18:44:00:25 - 18:44:58:05

Lisa: So Jackie and Sami - you both started elementary school at the same time or in the same grade.

Jackie: Mm-hmm.

Lisa: Sami, what was that like for you, starting school with your sister?

Sami: Um, I liked it just because when I was younger I was so shy that like even um my mom tried to put me in a grade since I'm a year younger than Jackie she tried to put me in the grade below, or the grade above and um, she wanted to put Jackie in the grade below but I was so shy that my teacher told my mom that I was immature and that I should repeat the grade so then we ended up being in the same grade together. But I liked it, because I was so shy, so it was nice to have someone there with me. So that was good.

Lisa: Do you remember Sami being shy?

Jackie: Mm-hmm.

Lisa: Yeah? Did you look after her because you were her big sister?

Jackie: Yeah.

18:44:58:25 - 18:45:17:25

Lisa: Okay. Did you share friends when you were in school together?

Jackie: Yeah.

Sami: I made all my friends through Jackie, pretty much. It was like my mom would have people over and we would all play together and then that's how we became friends.

18:45:21:00 - 18:45:52:20

Lisa: Did you... did you do some of the same activities in elementary school?

Sami: What did we do in elementary school?

Jackie: Um, cheerleader.

Sami: We were cheerleaders. What else did we do?

Jackie: Um, birthday.

Sami: No, we had sleepovers.

Jackie: Oh yeah, sleepovers.

Sami: And what else did we do?

Jackie: Swimming.

Sami: Mm-hmm.

18:46:10:25 - 18:46:43:25

Sami: What else did we do in school?

Jackie: Math.

Sami: Math. We did math.

Jackie: Social studies.

Sami: And social studies. Those are subjects.

Jackie: Uh...

Sami: Did we play a lot?

Jackie: Mm-hmm.

18:46:48:05 - 18:47:24:05

Lisa: Jackie do you think that students ever treated you differently, some of the kids you went to school with, because you had a disability?

Jackie: Mm-hmm.

Lisa: How did they treat you differently?

Jackie: They teased me.

Lisa: And do you remember what they said when they would tease you?

Jackie: Bad words.

Sami: Bad words?

Jackie: Yeah, bad words.

18:47:25:10 - 18:47:56:00

Lisa: And Sami, do you remember that happening to Jackie, did you observe or hear kids teasing her?

Sami: In elementary school not really because everyone is so young. They, you know, everyone likes everyone but middle school was different and yeah I definitely saw that.

Lisa: Okay, do you know some of the words that kids use that are mean, Jackie, did you ever hear the "R" word used?

Jackie: Yeah.

Lisa: And how would that word make you feel when you would hear that?

Jackie: Sad.

18:47:58:20 - 18:48:25:15

Lisa: Sami, what would you response be if you heard kids using that word?

Sami: Um, at first I would get, like, really pissed off and then um I'd probably go home and cry so I was a wimp. But you know, I would just be like "don't say that word". Or sometimes I wouldn't say anything. I would just kind of internalize it; internalize it a lot actually.

18:48:29:00 - 18:49:09:20

Lisa: You said, Sami, that things were different when you went to middle school. Um, middle school is kind of a tough time, right, because kids are always trying to form their own identity at that point and maybe recognize I think is their own person. So did going to school as sisters make it hard for both of you to sort of be your own people?

Sami: Did you feel like your own person in school?

Jackie: Mm-hmm.

Sami: I mean I didn't really just because it was like constantly we were together so it was like I never got that separation of like being my own person.

18:49:15:00 - 18:50:10:10

Lisa: And you mentioned that in middle school the experience changed a little bit. The kids were kinder and gentler in elementary school. How did the experience change in middle school?

Sami: Um, well we have two elementary schools in our area so everyone that we went to elementary school with knew Jackie, knew who she was, all that stuff but then once we got into middle school the other elementary school came in and they didn't have anyone with a disability, like well with Down syndrome in their grade or class so I think it was a lot different because you had people coming in that didn't know disability was or what Down syndrome was so I think it made them judge a lot more and the kids that we went to elementary school with.

18:50:13:20 - 18:50:54:10

Lisa: Okay, you both also have been and are Temple University students.

Jackie: Mm-hmm.

Lisa: Um did you have any reservations, Sami, about going to Temple at the same time Jackie was going to Temple?

Sami: Um, well I started before she did and then she came. I mean I was really happy that she was coming. Um, I mean she, you know, and so it was all about Temple anyway because my mom works here, so it wasn't like anything different, and I rarely saw her around campus so that was kind of nice, no offense.

18:50:55:00 - 18:51:34:22

Lisa: Jackie, can you tell me about going to Temple? About going to college here? Did you like studying at temple?

Jackie: Yeah and I have a friend Erin at Temple too.

Sami: Her friend Erin goes to Temple too.

Lisa: What kind of classes did you take when you were here?

Jackie: I take seminar class.

Sami: What else did you take?

Jackie: Sew.

Sami: Show?

Jackie: Sewing.

Sami: Oh sewing class.

Jackie: Yeah, sewing class.

Sami: Did you take a dance class here too?

Jackie: Hip-hop class.

Sami: You took a hip-hop class.

18:51:36:10 - 18:51:50:25

Lisa: And did you work when you were on campus like a lot of students do?

Jackie: Yeah.

Lisa: What did you do?

Jackie: I work at the hotel.

Lisa: And what did you do at the hotel?

Jackie: Clean different stuff.

18:51:52:25 - 18:52:43:19

Lisa: Can you tell me about some of the friends you made when you were studying at Temple?

Jackie: Erin.

Sami: Who else? Everyone knows Erin. Who else did you make friends with?

Jackie: Paul.

Sami: Paul. Who else?

Jackie: Lior.

Sami: Lior.

Jackie: Charles.

Sami: Charles.

Jackie: Brenda.

Sami: Brenda.

Jackie: I miss her. Alex, Keona.

Sami: Keona.

Jackie: Misty.

Sami: Mm-hmm.

Jackie: Mrs. Perry.

Sami: Who is your mentor?

Jackie: Sunit.

Sami: Sunit and who else? It was just Sunit?

Jackie: Yeah. Oh and Kate and Todd.

Sami: And Kate and Todd?

Jackie: Yeah. I miss her.

Sami: Do you still talk to them?

Jackie: Yeah.

Sami: What about Lior?

Jackie: Him too.

Sami: Yeah?

18:52:45:25 - 18:53:00:10

Lisa: Um, Jackie now that you've graduated what are you doing? Do you have a job?

Jackie: Yes I do.

Lisa: And can you tell me about your job?

Jackie: I work at Giant and Scenic Hills.

Sami: Scenic Hills is the elementary school we went to.

18:53:00:15 - 18:53:30:20

Lisa: Well firstly what do you do at Giant?

Jackie: I'm a bagger there.

Lisa: And what do you do at Scenic Hills?

Jackie: I volunteer and I do math.

Sami: She volunteers.

Lisa: And you said you do math, what type of math do you do?

Jackie: I grade them.

Sami: She grades the math sheets.

Lisa: And do you support your old teacher there?

Jackie: Yeah, Miss. Mack.

Lisa: Would you like to do more work?

Jackie: Yeah.

18:53:32:00 - 18:53:44:10

Lisa: What would your dream job be?

Jackie: Office. My mom's office.

Lisa: And what kind of... what would you like to do at an office?

Jackie: Shredding.

Sami: Training?

Jackie: No, shred.

Sami: Oh shredding.

18:53:45:20 - 18:55:04:20

Lisa: Jackie, when you're not working, because it sounds like you're pretty busy with your jobs, what would you like to do?

Jackie: Uh...

Sami: What do you do when you're not working?

Jackie: Um.

Sami: What do you do?

Jackie: Watch TV.

Lisa: Do you have a favorite TV show?

Jackie: Yeah, Law & Order.

Sami: Law & Order...

Jackie: SVU.

Lisa: Law and Order...

Jackie: SVU.

Lisa: What does that stand for?

Jackie: Stabler .

Lisa: Oh, is that your favorite character?

Jackie: Yeah. I like him.

Sami: But what does SVU stand for?

Jackie: Law & Order.

Sami: Special Victims Unit.

Jackie: Special Victims Unit

Lisa: Why do you like that show?

Jackie: My guys on there.

Sami: Because her guys on there.

Lisa: Stabler.

Jackie: Stabler.

Lisa: Why is Stabler so cool?

Jackie: Because I like him.

Sami: He's a good cop, right?

Jackie: Yeah. He has a partner Olivia.

Sami: And he has a partner, Olivia.

18:55:14:20 - 18:56:00:20

Lisa: So do you watch TV by yourself or with other people?

Jackie: My dad.

Sami: Do you ever watch TV with me?

Jackie: Yeah.

Sami: You do? When?

Jackie: We watch Sponge Bob.

Sami: Oh we watch Sponge Bob I know it's a little immature.

Jackie: I like him Sponge Bob and Patrick.

Sami: If it's not Sponge Bob, we're not watching TV together. She won't let me sit in the room with her. Right?

Lisa: How come? Why can't your sister sit in the room with you?

Jackie: She teases me.

Sami: Huh?

Jackie: She teases me.

Sami: I tease you?

Jackie: Yeah.

18:56:01:15 - 18:56:52:00

Lisa: Can you tell me about some of your friends you like to hang out with?

Jackie: Erin, Ryan, Stephanie, Britney, Kelly, and Holly.

Sami: And...

Jackie: and Melissa.

Sami: What about Gina.

Jackie: I said her.

Sami: Oh.

Jackie: I said (inaudible).

Sami: What do you guys do?

Jackie: Girl's night.

Sami: You have girl's night? What do you do at girl's night? What do you do at girl's night?

Jackie: Girls.

Sami: But what do you do?

Jackie: Have pizza, have cake, dance.

Sami: Dance?

Jackie: Play Wii.

Sami: Huh?

Jackie: Play Wii.

Sami: Play Wii. Do you have karaoke?

Jackie: Laurie doesn't have that.

Sami: Laurie doesn't have that.

18:56:53:10 - 18:57:26:20

Lisa: It sounds like you have a nice group of friends, Jackie.

Jackie: I do. I have all my best friend and Paul. His birthday is today. Six o'clock.

Sami: Six o'clock tonight, yep.

Lisa: Will you do something special for his birthday?

Jackie: Yeah we will go to her house.

Sami: And going to her house?

Jackie: It's her house. Dog there.

Sami: There's a dog there.

Jackie: Yeah barks a lot.

Sami: Barks a lot? Hmm sounds like our dog.

Jackie: Yep.

18:57:27:15 - 18:58:09:10

Lisa: Jackie and Sami, you both live with your family now...

Jackie: Yep.

Lisa: This question is for Jackie right now. Do you ever want to live on your own?

Jackie: Yes. With Paul.

Sami: With Paul?

Jackie: Yeah, Paul. My best friend. Paul.

Sami: You want to live with him?

Jackie: Nah, I'll live with Erin.

Sami: You want to live with Erin?

Jackie: Yeah.

Sami: In your own apartment?

Jackie: Yep.

Sami: With me?

Jackie: Nope.

Lisa: You don't want to live with your sister?

Jackie: No.

Lisa: How come?

Jackie: I like Erin.

Sami: I thought I was your bestest sister ever!

Jackie: Alright - Erin and Sami.

18:58:13:00 - 18:59:08:10

Lisa: Jackie, for people who don't know you so well, what is one thing people should know about you? How would you describe yourself to someone who didn't know you?

Jackie: Oh...

Sami: Are you nice?

Jackie: Yeah.

Sami: Friendly?

Jackie: Yep.

Sami: Courteous?

Jackie: Hmm?

Sami: Are you polite?

Jackie: Mm-hmm.

Sami: Are you?

Jackie: Yes.

Sami: Are you helpful?

Jackie: Yep.

Sami: You hold the door for people?

Jackie: Yep.

Sami: You do?

Jackie: Yep.

Sami: Wow.

18:59:10:15 - 18:59:42:20

Lisa: Do you think for Jackie having a disability makes it harder to do some of the things you want to do?

Jackie: I like math and color.

Sami: No, is it harder for you to do things because you have a disability?

Jackie: Oh yeah.

Sami: Why?

Jackie: Uh... It's not easy.

Sami: It's not easy?

Jackie: Mm-hmm.

18:59:48:00 - 19:00:20:15

Lisa: Jackie, I wanted to ask you what your favorite thing is about your sister Sami.

Jackie: Uh, Sami is teacher at Karate.

Sami: That's your favorite thing about me?

Jackie: No, you teach um kickboxing.

Sami: But what's your favorite thing about me?

Jackie: Sami is my best sister and Katie too.

19:00:22:00 - 19:01:16:15

Lisa: What's your favorite thing about yourself?

Jackie: Uh...

Lisa: What 's your favorite thing about yourself?

Jackie: Color.

Sami: That you can color?

Jackie: And math.

Sami: And that you do math.

Lisa: Sami, what's your favorite thing about Jackie?

Sami: Just that there's no judgment whatsoever about anyone and she just has like an "I don't give a hoot about anything", you know. She just doesn't care.

19:01:17:05 - 19:01:47:25

Lisa: Thanks. Jackie, we're going to talk to Sami for a little bit but is there something else that you want to say about having a sister or...

Jackie: Uh.

Lisa: Or something you want to share about you?

Jackie: Sami is the best sister because she takes me to kickboxing.

Sami: I'm the best sister because I take you to kickboxing?

Jackie: Yeah.

Sami: Where would you be without me?

Lisa: Okay. Thanks Jackie.

Jackie: Mm-hmm.

Interview Continues with Sami

19:13:07:20 - 19:14:02:20

Lisa: Sami, we're continuing the interview with you on your own so that you can feel free to discuss some of the issues, that you faces as a sibling without perhaps having to be concerned about how that will sound and make Jackie feel, so that's why we're going forward this way. So some of the things that I'll ask you might seem a little redundant. We talked about them earlier so just bear with me.