Theresa
I have a sister named Theresa. She's about 6 years older than me, so she's 40 now. She has Williams Syndrome.
Reading that clinical description is very strange. I don't associate HER with a disability. I know she has some disabilities. She's mildly retarded, she has a hard time keeping the weight off, she's got the emotional development of a teenager. I feel like I just described most of America.
So, I don't think of my sister as Handicapped. In some ways, she is. In some ways, she has boundaries and barriers that the rest of us just don't have to deal with. In other ways, she is lightyears ahead of the curve.
It's funny. Thinking about my sister, the strongest memories I have are always of conflict. We butted heads CONSTANTLY. She was incredibly stubborn, and absolutely convinced she was always right. I, on the other hand, was the model of reason and humility... WHAT?!
Yeah. We were a lot alike. And because of this, we constantly argued. I felt like she was spoiled rotten by my parents, and she felt like I didn't respect her position as oldest child.
We went to the same school for a couple of years in Elementary school, since she had been held back. In first grade, this was fine. I didn't understand that the way my sister acted was something to be embarrassed about. In second grade, I started to be exposed to the horrific tribal cruelty that is the childish mindset. And I started to realize that Theresa wasn't just my bossy, annoying older sister, she was "NOT NORMAL". Horrors.
By third grade, I was torn between being terribly, terribly embarrassed to acknowledge her when we saw each other in passing, and beating up kids who called her retarded. I was a popular, happy kid. I did NOT want to be associated with my sister. But that didn't mean that anybody else got to make fun of her, to be cruel to her. She actually had a pretty awesome time in school. She was exposed to very little of the derision that I heard, as far as I know at least. She was an extremely gregarious, happy child who made friends with quite literally EVERYONE.
I was actually very jealous of that ability of hers. She had long, silky curly black hair, HUGE grey eyes, giant lips, a tiny nose... she was pretty much a gelfling. Adorable, loving, intensely curious about everyone. No wonder she was surrounded by love.
My parents put a lot of effort into making sure she was happy. I remember the stress my mom experienced, trying to make sure the school treated her right, that she had access to all the resources conceivably available to her. The town I grew up in, Nashua, NH, wasn't exactly the most progressive place. But it did have some resources made available, and my mom and dad both aggressively pursued those.
We were raised as Jehovahs Witnesses. This meant that my sister was included in an extremely tight knit community, surrounded by loving, trustworthy brothers and sisters. In theory, at least. In reality, we lived in New England. The people we knew were white, conservative, reserved, and distrusting of difference. I felt that they looked down on my sister, condescended to her, and that bothered me.
But, it wasn't really that bad. There were lots of genuinely kind, patient humans who made sure to include my sister in the day to day workings of community. It was good for her, I think, that constant social conditioning. She was exposed to people of many different cultures, because every single Jehovahs Witness who traveled through our town ended up at dinner at our house. People from all over the world ended up sitting with us at our dining room table, being exposed to the loving adoration my sister showed to strangers.
There was one man, in particular, my sister took a shine to. He was from Barbados, a big, incredibly beautiful man, with skin so dark it had a purple sheen, a giant smile that rivaled my sisters for warmth, a booming voice that translated to liver shaking laughter often, and a proclivity for touching that made my New England born parents extremely nervous. I'm trying to remember his name, and I just can't. He stayed in Nashua for a couple of months, I don't remember why. But he spent a lot of time with us, eating and talking. My family had a proclivity for puns and word play that bordered on manic. We couldn't stop ourselves, and would laugh hysterically over the weirdest shit. And this poor guy just did NOT get us. I have this really vivid mental image of his completely bemused face, a confused but good natured smile plastered on it while he looked around the table at us, all slapping the table and almost crying in laughter over some strange, obscure word play that really only made sense to us. And my sister sitting next to him, not laughing with us, but staring up at him with her hand on his arm, smiling her crooked, open mouthed smile. Heh. He was a lovely, lovely person.
I lost touch with my sister when I left home at 23. We had never talked much on the phone, and I rarely called her after I moved to Oregon. I'd talk to her every now and then when I called my parents and she happened to be there. But those times were few and far between.
So, it was 7 years before I saw her again after I left. 7 years before I saw any of my family again. But she had changed the most. And the least.
Our first interaction, after 7 years away, was a hug. And then an argument. One I fell into almost with a sense of nostalgia. I couldn't help but grin at her while she was yelling at me, which she responded to by hitting me on the arm. And then laughing, and hugging me again.
Since then, I've seen her every time I've gone back to visit my family. 3 or 4 times. I've talked to her more on the phone, though it's still rare. But I feel closer to her. I feel like we got the chance to see each other as adults, to relate to each other as humans, instead of just siblings.
This last time I went to visit, 2 months ago, we spent a lot of time together. I took her out to a horse stable that she was thinking about taking riding lessons at. We went out to breakfast and lunch a number of times, went grocery shopping, went and got ice cream cones together. And it was wonderful. We got along. We rarely argued, and I rarely felt that sense of impatience I get around her sometimes.
See, my sister, while sweet and adorable and loving, is also INCREDIBLY manipulative. She knows exactly what to say and how to act in order to get what she wants from the world. I've never begrudged her this ability. She merely pushes hard for this things that we all take for granted, and which she doesn't get to have. She can charm a complete and total stranger into buying her a cup of coffee or an ice cream. She can guilt her roommate into taking her somewhere she's not supposed to go, she can convince her work that she doesn't need to come in today.
And she can guilt my parents into... well, into feeling guilty.
She has a weird relationship with my parents. They still treat her like a child. She's their handicapped responsibility, their child who will never be able to truly take care of herself. And she's been a frightening, heavy burden to them at times. She's an incredibly social person. There is no such thing as a stranger to her. She LOVES men, and has no sense of boundaries. So, my parents had a beautiful daughter, who loved men, didn't believe in strangers, but didn't have the emotional maturity to make good decisions. It drove them frantic with worry. My mother, especially. Her issues with sexuality and trust, while heavy on us, were crushing on Theresa.
I remember the first time I started to understand my sister was a sexual being, just like me. I came downstairs one morning, and she was sitting in the living room, face almost pressed to the TV. All I could hear was static coming from the TV, with an occasional strange noise. She saw me as I drew even with the TV, started hugely, and quickly turned it off. But not before I saw that there was nothing but static on it. I looked at her strangely, asked her what she was watching, and then had to laugh at her incredibly guilty, panicked look and frantic "NOTHING!". I went to eat and thought nothing more of it. But I went back to the TV later, turned it on, and quickly found out that my sister had been the first of us to discover that the Playboy channel, while mostly static, was discernible on our TV. I proceeded to take full advantage of this fact, as often as I possibly could. And I never ratted my sister out. I came down to breakfast and found her sitting with her nose pressed to the TV quite a few times after that. I never said anything to her about it, but we both knew what was up.
It always made me sad, wondering what my sister would do as an adult. Would she ever be able to fall in love, to have sex, to have a boyfriend? I knew she wanted these things. But we were never allowed to talk about them. Bringing up the idea of Theresa having a normal love life would send my mom into a frantic tizzy of worry. I used to joke with Theresa about the boys she liked, to tease her about which ones payed attention to her, the same way I would with any of my female friends or my other sister. When we were both younger, this was funny. But the older she got, and the more it was impressed upon her that she was not normal and could not expect to have a normal sex life, the less funny it got. I stopped doing it completely the day it made her cry.
There was one boy she had a regular "relationship" with. Michael Fortuna. He had Williams Syndrome as well, though it manifested slightly differently for him. He was a touch more mentally handicapped than my sister, and this made her treat him in an almost motherly fashion. They loved each other for a long, long time. Starting in elementary school, and going well past high school. But, on top of my parents fear for my sisters virtue, there was the complicating factor that we were Witnesses. And we were only allowed to date, and associate, with those in our religion. Our choices were severely limited, my sisters most of all. Michael was not a Witness, and therefore she was not allowed to actually date him. My parents showed a lot more leeway for their friendship than they would have otherwise, because she had so few choices available to her. But they didn't go so far as to allow romance.
As far as I know, my sister has never dated anyone. She has never had sex, has never kissed a boy, has never gone on a date. And that thought makes me choke with sadness. So much love, so much incredible love, forced into such strict, limited boundaries.
I'm not a parent. I can't possibly know the fear my parents experienced. But this part, this absolute denial of her right to be an adult, I do judge.
There is so much I wish I could have done for my sister. I left so early, I found my freedom before I really understand how little freedom she had.
Now, as an adult with a good job and plenty of freedom, I want to help. I have this knowledge, have always had this knowledge, that I will someday be my sisters caretaker. I'll probably have to move back east to do it, though I'd love to move her out here. But my parents would NEVER sign off on that, and I honestly don't know if so much change would actually be good for her. So, I'll probably have to move back to New England, if not to Nashua. The older I get, the more I'm ok with that. I worry about my loss of freedom, selfishly. I worry about repressing my own sexuality in order to create a space for her that's safe and acceptable to my parents. I worry about the stress and anger and impatience she'll bring into my life, and I into hers.
But mostly, I just accept, unquestioningly. She's my sister. I want her to be happy, to have as much as I can offer her. She'd take care of me in a HEARTBEAT if our situations were reversed. She tries to take care of me already, to the extent that she's able. She worries about me and loves me, scolds me and encourages me. She's my sister.
Reading that clinical description is very strange. I don't associate HER with a disability. I know she has some disabilities. She's mildly retarded, she has a hard time keeping the weight off, she's got the emotional development of a teenager. I feel like I just described most of America.
So, I don't think of my sister as Handicapped. In some ways, she is. In some ways, she has boundaries and barriers that the rest of us just don't have to deal with. In other ways, she is lightyears ahead of the curve.
It's funny. Thinking about my sister, the strongest memories I have are always of conflict. We butted heads CONSTANTLY. She was incredibly stubborn, and absolutely convinced she was always right. I, on the other hand, was the model of reason and humility... WHAT?!
Yeah. We were a lot alike. And because of this, we constantly argued. I felt like she was spoiled rotten by my parents, and she felt like I didn't respect her position as oldest child.
We went to the same school for a couple of years in Elementary school, since she had been held back. In first grade, this was fine. I didn't understand that the way my sister acted was something to be embarrassed about. In second grade, I started to be exposed to the horrific tribal cruelty that is the childish mindset. And I started to realize that Theresa wasn't just my bossy, annoying older sister, she was "NOT NORMAL". Horrors.
By third grade, I was torn between being terribly, terribly embarrassed to acknowledge her when we saw each other in passing, and beating up kids who called her retarded. I was a popular, happy kid. I did NOT want to be associated with my sister. But that didn't mean that anybody else got to make fun of her, to be cruel to her. She actually had a pretty awesome time in school. She was exposed to very little of the derision that I heard, as far as I know at least. She was an extremely gregarious, happy child who made friends with quite literally EVERYONE.
I was actually very jealous of that ability of hers. She had long, silky curly black hair, HUGE grey eyes, giant lips, a tiny nose... she was pretty much a gelfling. Adorable, loving, intensely curious about everyone. No wonder she was surrounded by love.
My parents put a lot of effort into making sure she was happy. I remember the stress my mom experienced, trying to make sure the school treated her right, that she had access to all the resources conceivably available to her. The town I grew up in, Nashua, NH, wasn't exactly the most progressive place. But it did have some resources made available, and my mom and dad both aggressively pursued those.
We were raised as Jehovahs Witnesses. This meant that my sister was included in an extremely tight knit community, surrounded by loving, trustworthy brothers and sisters. In theory, at least. In reality, we lived in New England. The people we knew were white, conservative, reserved, and distrusting of difference. I felt that they looked down on my sister, condescended to her, and that bothered me.
But, it wasn't really that bad. There were lots of genuinely kind, patient humans who made sure to include my sister in the day to day workings of community. It was good for her, I think, that constant social conditioning. She was exposed to people of many different cultures, because every single Jehovahs Witness who traveled through our town ended up at dinner at our house. People from all over the world ended up sitting with us at our dining room table, being exposed to the loving adoration my sister showed to strangers.
There was one man, in particular, my sister took a shine to. He was from Barbados, a big, incredibly beautiful man, with skin so dark it had a purple sheen, a giant smile that rivaled my sisters for warmth, a booming voice that translated to liver shaking laughter often, and a proclivity for touching that made my New England born parents extremely nervous. I'm trying to remember his name, and I just can't. He stayed in Nashua for a couple of months, I don't remember why. But he spent a lot of time with us, eating and talking. My family had a proclivity for puns and word play that bordered on manic. We couldn't stop ourselves, and would laugh hysterically over the weirdest shit. And this poor guy just did NOT get us. I have this really vivid mental image of his completely bemused face, a confused but good natured smile plastered on it while he looked around the table at us, all slapping the table and almost crying in laughter over some strange, obscure word play that really only made sense to us. And my sister sitting next to him, not laughing with us, but staring up at him with her hand on his arm, smiling her crooked, open mouthed smile. Heh. He was a lovely, lovely person.
I lost touch with my sister when I left home at 23. We had never talked much on the phone, and I rarely called her after I moved to Oregon. I'd talk to her every now and then when I called my parents and she happened to be there. But those times were few and far between.
So, it was 7 years before I saw her again after I left. 7 years before I saw any of my family again. But she had changed the most. And the least.
Our first interaction, after 7 years away, was a hug. And then an argument. One I fell into almost with a sense of nostalgia. I couldn't help but grin at her while she was yelling at me, which she responded to by hitting me on the arm. And then laughing, and hugging me again.
Since then, I've seen her every time I've gone back to visit my family. 3 or 4 times. I've talked to her more on the phone, though it's still rare. But I feel closer to her. I feel like we got the chance to see each other as adults, to relate to each other as humans, instead of just siblings.
This last time I went to visit, 2 months ago, we spent a lot of time together. I took her out to a horse stable that she was thinking about taking riding lessons at. We went out to breakfast and lunch a number of times, went grocery shopping, went and got ice cream cones together. And it was wonderful. We got along. We rarely argued, and I rarely felt that sense of impatience I get around her sometimes.
See, my sister, while sweet and adorable and loving, is also INCREDIBLY manipulative. She knows exactly what to say and how to act in order to get what she wants from the world. I've never begrudged her this ability. She merely pushes hard for this things that we all take for granted, and which she doesn't get to have. She can charm a complete and total stranger into buying her a cup of coffee or an ice cream. She can guilt her roommate into taking her somewhere she's not supposed to go, she can convince her work that she doesn't need to come in today.
And she can guilt my parents into... well, into feeling guilty.
She has a weird relationship with my parents. They still treat her like a child. She's their handicapped responsibility, their child who will never be able to truly take care of herself. And she's been a frightening, heavy burden to them at times. She's an incredibly social person. There is no such thing as a stranger to her. She LOVES men, and has no sense of boundaries. So, my parents had a beautiful daughter, who loved men, didn't believe in strangers, but didn't have the emotional maturity to make good decisions. It drove them frantic with worry. My mother, especially. Her issues with sexuality and trust, while heavy on us, were crushing on Theresa.
I remember the first time I started to understand my sister was a sexual being, just like me. I came downstairs one morning, and she was sitting in the living room, face almost pressed to the TV. All I could hear was static coming from the TV, with an occasional strange noise. She saw me as I drew even with the TV, started hugely, and quickly turned it off. But not before I saw that there was nothing but static on it. I looked at her strangely, asked her what she was watching, and then had to laugh at her incredibly guilty, panicked look and frantic "NOTHING!". I went to eat and thought nothing more of it. But I went back to the TV later, turned it on, and quickly found out that my sister had been the first of us to discover that the Playboy channel, while mostly static, was discernible on our TV. I proceeded to take full advantage of this fact, as often as I possibly could. And I never ratted my sister out. I came down to breakfast and found her sitting with her nose pressed to the TV quite a few times after that. I never said anything to her about it, but we both knew what was up.
It always made me sad, wondering what my sister would do as an adult. Would she ever be able to fall in love, to have sex, to have a boyfriend? I knew she wanted these things. But we were never allowed to talk about them. Bringing up the idea of Theresa having a normal love life would send my mom into a frantic tizzy of worry. I used to joke with Theresa about the boys she liked, to tease her about which ones payed attention to her, the same way I would with any of my female friends or my other sister. When we were both younger, this was funny. But the older she got, and the more it was impressed upon her that she was not normal and could not expect to have a normal sex life, the less funny it got. I stopped doing it completely the day it made her cry.
There was one boy she had a regular "relationship" with. Michael Fortuna. He had Williams Syndrome as well, though it manifested slightly differently for him. He was a touch more mentally handicapped than my sister, and this made her treat him in an almost motherly fashion. They loved each other for a long, long time. Starting in elementary school, and going well past high school. But, on top of my parents fear for my sisters virtue, there was the complicating factor that we were Witnesses. And we were only allowed to date, and associate, with those in our religion. Our choices were severely limited, my sisters most of all. Michael was not a Witness, and therefore she was not allowed to actually date him. My parents showed a lot more leeway for their friendship than they would have otherwise, because she had so few choices available to her. But they didn't go so far as to allow romance.
As far as I know, my sister has never dated anyone. She has never had sex, has never kissed a boy, has never gone on a date. And that thought makes me choke with sadness. So much love, so much incredible love, forced into such strict, limited boundaries.
I'm not a parent. I can't possibly know the fear my parents experienced. But this part, this absolute denial of her right to be an adult, I do judge.
There is so much I wish I could have done for my sister. I left so early, I found my freedom before I really understand how little freedom she had.
Now, as an adult with a good job and plenty of freedom, I want to help. I have this knowledge, have always had this knowledge, that I will someday be my sisters caretaker. I'll probably have to move back east to do it, though I'd love to move her out here. But my parents would NEVER sign off on that, and I honestly don't know if so much change would actually be good for her. So, I'll probably have to move back to New England, if not to Nashua. The older I get, the more I'm ok with that. I worry about my loss of freedom, selfishly. I worry about repressing my own sexuality in order to create a space for her that's safe and acceptable to my parents. I worry about the stress and anger and impatience she'll bring into my life, and I into hers.
But mostly, I just accept, unquestioningly. She's my sister. I want her to be happy, to have as much as I can offer her. She'd take care of me in a HEARTBEAT if our situations were reversed. She tries to take care of me already, to the extent that she's able. She worries about me and loves me, scolds me and encourages me. She's my sister.
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