Chapter 4: Family Involvement in Disability Organizations, Middle School Experiences

19:34:14:10 - 19:35:32:05

Lisa: So as best as you can recall, were your parents very involved with this extended disability community, when you all were growing up?

Sami: Like, what...

Lisa: Did they have sort of places to go for information or resources or to meet other parents?

Sami: Mm-hmm. I think the Down syndrome Interest Group of Delaware County. I remember that when I was very young, so I don't know if it started years before Jackie was born or around the same time as Jackie was born, because I just remember there was always parties we would go to and I could meet siblings of or kids that had other siblings that didn't have a disability so that was nice but it kind of, like, grew. I mean like we still saw them when I was like in middle school and everything but it was a lot different because you're middle school so you're not like that's cool. You know what I mean? Like you kind of think that's lame I don't want to go anymore and stuff like that but yeah they always had, they're friendly with a lot of people so I mean that's probably one of their, a lot of their best friends are people who have kids with Down syndrome.

19:35:33:00 - 19:36:22:05

Lisa: And you have talked about; in fact there was a photo in your album, of you swimming with Jackie at the Unified Games for Special Olympics and things like that. Did those experiences; were they generally good for you when you were growing up?

Sami: Oh, yeah, I loved it, I loved it because you got to meet so many people. I mean even now I'm still meeting new people by going to... we go to a sports camp every year but it's not, like, unified. I just go to be a coach but when I was younger it was fun because like I got to win a medal, and it was swimming, so, like, I like to swim so that was fun and we go to go to different places and compete and I don't know. It was a lot of fun and just always meeting people was fun too.

19:36:50:25 - 19:38:56:20

Lisa: Can you tell me a little bit about how the experience changed going from elementary school to middle school? What was the sort of first indicator that it was different for you?

Sami: Well I guess we had two separate elementary schools so I kind of had a feeling that it was going to be rough just because everyone at our elementary school knew Jackie and knew who she was and knew what to expect from her and all that stuff but with the kids from the other elementary schools they didn't really know who she was and what Down Syndrome was or anything like that so it was like she was an easy target. And I kind of was too because I was very sensitive and so like you know I would see different things in the hallways and things like that. We also had a young man who had cerebral palsy in our school but he was in, and he went to Scenic as well so but he was a guy and like he played sports and stuff so and he like, I feel like Jackie was a little more sheltered. I think me and Katie were sheltered as well but he like would like curse and stuff so like kids would think he was cool and like Jackie didn't really curse. Not that cursing when you're in elementary school is cool but to other kids it is but so like I don't know. I feel like kids kind of accepted him more just because he was like a boy and he would kind of tell you off whereas Jackie would just kind of not really like she just, you could tell she was different. I mean the young man like used a walker and didn't really talk much but he had like a lot of friends that were I guess popular and Jackie not so much. So I really saw a difference there and just the way people treated me, kind of too.

19:38:57:15 - 19:40:34:20

Lisa: The way they treated you because you were Jackie's sister?

Sami: Yeah, because I was Jackie's sister.

Lisa: Can you give me an example of that Sami?

Sami: Well I remember one year - it was the summer of 7th grade - and uh I was going to my friend's house and back then they had AOL instant messenger and we were... it was like me and three other girls and we were just like... we were on there just goofing off, whatever and then one of these boys from our grade like messaged us and was like "hey, who is this?" And I was, like, and all the girls said I was, "I don't want to say it's me, I don't want to say it's me" and I was, like, "just say it's me, who cares, whatever" and then they said it was me and then they just started saying these really horrible things and they were just really mean. They told me my sister was fat and retarded. It was just really hurtful. I would have never said that to anybody about their sibling. They told me, like, they told me I should, like, they just said really mean things.

19:40:52:25 - 19:41:52:20

Lisa: Sami, you've been describing yourself throughout our conversation as a shy person so what kind of affect did that kind of behavior, hearing negative things about your sister; have on you as a person?

Sami: I was just, like, "oh my God, I don't want to be seen with her". Like, I don't want people to know she's my sister. I was... and I hate that I felt that way about my sister. It was just really hard. I think uh it was just hard for me to accept that that's how she was. Like I was worried about everyone else accepting her I didn't accept her so I like I think that's like the biggest thing.

19:41:57:15 - 19:42:42:15

Lisa: Did it affect your relationship with your own family, with your parents, with Katie as well, all of it?

Sami: Definitely, because I was mean to Katie too. I was just... I just didn't want to be like... but everyone's family is embarrassing in their own way, you know. It's a lot different now, just because I'm not always with Jackie. I'm like I can do my own thing and it's just a lot easier that way.

19:42:46:00 - 19:46:06:20

Lisa: So you talked about having the opportunity to meet other siblings sometimes through the activities that your parents and Jackie were involved with. You sort of all went as a family with some different groups. It does seem like your experience was a little bit unique.

Sami: Mm-hmm.

Lisa: Just because of your school experience. Because of all of the together time that you and Jackie had so I'm curious about meeting other siblings. Was that a good thing for you? Did you feel that you had things in common with other siblings of people with disabilities?

Sami: Yes and no because, like I said, a lot of people didn't go to the same school as their sibling. A lot of kids went to like private or Catholic schools and people with disabilities aren't accepted there -surprisingly- and so their school experience was definitely different from mine. But like I said we go to a summer camp every year and uh I can remember one year we went and I'm friendly with this one girl who has her fraternal twin brother has Down syndrome so we went and she, one of the old camper, like an old camper from way long ago was there and she was asking this girl about her sibling, like, why she goes to camp, how she got involved with it, blah, blah and the girl was like "oh my twin brother has Down syndrome" and the lady was like "really, how does that work?" And she was kind of, like, "what do you mean how does that work? He's, like, my fraternal brother and he has Down syndrome." What's there to work, you know? So we get, we share the commonality of getting annoyed by what we think are kind of like stupid questions but we know that people who don't have someone with a disability in their family don't understand that but it's also kind of like common sense. Like we've had people say, like, "oh can people with Down syndrome drink?" And we're, like, "if they're 21, yes they can." Like, I remember one time my friend came over and my parents had gone out and I was just staying home until you know before about an hour or so before they were coming home and um he came over and was like as we were leaving, Jackie and her friend were watching TV and coloring or whatever and as we were leaving he said to me, "Can people with Down syndrome stay home by themselves?" And I was, like, "Can you stay home by yourself?" Like it was, like stuff like that we share and so it's nice to have like other people there to hear their experiences with stuff. I know one girl told me that her brother's learning how to drive and he has autism. Yeah so it's like people with autism can drive, you know. They have a will, there's a way, you know. So it's nice to have that like connection of knowing that your sibling can do whatever you do. And it's nice to share like those funny stories with people too and like they'll get them, you know? So...