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Author Topic: Captured Forever - Landmark 500
Eaquae Legit
Member # 3063

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I've bene here for a long time now, and I have just 500 posts. I lurk a lot, and rarely ever participate in heated discussions, partly because I guess I have a hard time jumping in where no one knows me.

And the only way people will get to know me, and I them, is to maybe share a little bit about myself. (That, and the fact that at this rate, I'm never going to get to a more worthy landmark number.)

My name is Ali, I'm a university student in Ontario, studying relgiion and language. I have three sisters and a brother, and I'm number 2. My program at school is a co-operative education program, wherein I spend four months at school, and four months at a work placement, alternating back and forth for five years.

My first job was at a l'Arche community - l'Arche Daybreak. I lived in a house with five core members (the adults with disabilities are called this because they truly are the core of the community) and five other assistants. One of the women there, Jane, was funny and lively and annoying as all hell.

When I woke her up in the morning, she would play hide and seek with me - always in the two same places, her closet and the bathroom. It could take upwards of twenty five minutes to wipe her eyes, and she would be laughing the whole time, especially when I pretended to look for her in ridiculous places.

When asked what she wanted to cook for dinner, she would yell "HAM." If we didn't have HAM, it was HOTDOGWEINERS.

She had five favourite movies: My Guy, My Guy, My Guy, Do-Da-Deer, and Mary Poppins. Do-da-Deer, I would learn, was "The Sound of Music." "My Guy" was the movie Sister Act. We watched that move incessantly. At least twice a week. By the end of the summer, I could have probably recited it by heart. The house was so very grateful when a copy of "Sister Act II" was introduced to the roster - ANYTHING for a little variety. A favourite dinner-time prank was to drape her napkin over someone's head - "MY GUY!" she would yell, because you looked like a nun.

She asked the same questions over and over again, once something got into her mind. Her bible study group was the topic of Sunday and Wednesday conversation. "MY DAD!" was the topic of the week when she knew he was coming. And heaven help us all when she realized her vacation was coming up. For two solid weeks, I heard nothing but the same questions, over and over again - "Who help me pack?"; "Tina help me pack?"; I leave Saturday?"; "Subly?" (Sudbury was where she was going); "Who help me pack?"; "I leave Saturday?"; "When Subly?"; and so on and so forth. I sat with her one day (watching My Guy, what else?) and she asked me those same questions for three solid hours. If I left the room, she followed me. I remember going to the bathroom as an excuse to have a few minutes of silence.

She was crotchety and irritable. She was loud and in your face. She didn't understand personal space, and she never tired of talking about her favourite things. There were days (many of them) when I wanted to wring her neck. Persuasion only worked so often.

And I remember, so clearly, the day I lost my heart to her, to the house, to the community, and to people everywhere who are somehow considered less human because they talk funny or see the world in a different way.

It was during the "Subly" time. At least a week and a half into it, so I was getting really tired by this time. I hadn't had a break for a while, since it isn't a 9-5, weekends-off kind of job. I was upstairs with another member of the house. Jane was alone downstairs for a few minutes. Tina and Peter were upstairs as well, doing something or other. Somehow, we all ended up in the same hallway at the same time. And then I saw Jane waddle up the stairs. Oh, crap was my first thought. Not again. But to my surprise, when she had made her way over to me, she didn't ask me about packing. Instead she tugged at my hand and told me to kneel. I did, somewhat bemused. She put her hand on top of my head, and gave me a "Blessing": "Ali, I like you, wakaship**. I go Subly, Saturday. I miss you, I sad, I cry. Wakaship. Amen." And then she let me up. I was a bit teary and I said to Tina: "And somehow, it's all worth it, isn't it?"

And after that, no matter how frustrated I got, no matter how hard she pushed me, no matter what was going on (and there were times when all I wanted to do was cry, sleep, or both at the same time), no matter what, there was a bond between us. She didn't care that I dressed unfashionably. She didn't care about my grades or my money or anything else. She cared about me, I was her friend, and not even endless rounds of My Guy could change that.

She's getting older now, and Alzheimer's has changed her a lot. She hardly recognzes me, especially since I no longer live with her and see her every day. She doesn't give blessings anymore, and she doesn't remember "wakaship." There are now only one or two ways that I can make her laugh and see the old spark in her eyes. But I still love her. She's changed me irrevocably, and I hope for the good. She, and the other core members in the house, and in the Daybreak community, have taught me so much about what it means to love, to be friends, to be human. She caught my heart and a large part of it will always remain connected to her, even after she's gone.

There's a lot more stories to tell, a lot more people to "meet" and a lot more of these "landmark moments" in my life. But Hopefully it will not take me another 2 and a half years to make another 500 posts. [Smile]

(** "Wakaship" is a unique Jane-ism that was far as we can tell, translates as "friendship" or "relationship." It's an affectionate term, used only for people she really considers friends.)

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Member # 3022

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Thank you, Ali. This is one of the most moving landmarks, ever [Smile]
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Member # 6237

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That was beautiful, Ali.

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Member # 6062

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[Hail] Ali I don't know that I'd have the strength to work in an environment like that.


That was a powerful story. Thanks for sharing it with us.

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Wow, that was beautiful Ali, thanks for sharing [Smile]
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Member # 2199

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That is a wonderful story....thank you for sharing it with us.


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Wow, Ali.

Thank you.

I've been mentored by a couple of people who were students and colleagues of Burton Blatt, who was a powerful voice for exposing the inhumane and brutal ways our country dealt with people who had mental retardation.

In one of his books (I can't locate it right now), he talked about the need for "good" stories about people with mental retardation. At the time he wrote, very few people with mental retardation told their own stories (still true) and most of the stories told about them were horrible.

Blatt knew how to tell the right kind of stories. The kind of stories that make it impossible to ignore the essential humanness of the individual, regardless of their intellectual ability.

Thank you (yeah, I said that already) for sharing this very good story.

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Eaquae Legit
Member # 3063

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I'll have to look him up, Stephen. The community and its members have written and published a number of stories - the "good stories." One former assistant who has experience with video editing has even made a few short films about some of the core members. And a lot of the folks, especially those who've been in the community a long time, have collected "life-story books," with memories and stories and contributions from friends and family. I'm trying to write some of my experiences down, but there's so many memories that whenever I try, I get distracted in all the other stories I could tell.

Thanks, everyone. [Smile]

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wow...even though I've heard parts of this story before, that was beautifully written, and a touching story...thank-you for sharing it [Smile]
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I'm glad you're here, EL. Thanks for sharing that wonderful story.

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That was really beautiful. Even though it was mostly a description of Jane, who you are is written all over it.
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I've heard bits and pieces of this story previously, but in reading it again now I was reminded exactly how incredibly honored I am to know you. Thank you for sharing this with us, Ali.

[ November 09, 2004, 01:36 AM: Message edited by: Lyraluthuen ]

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That's beautiful, EL. While I've never physically worked with somebody with a disability like that, I have kept close company with them and consider many of them to be my friends. It's amazing how wonderful such people are if you pay attention to them instead of to their disabilities, and it pities me that so many people don't.

[ November 09, 2004, 01:47 AM: Message edited by: Da_Goat ]

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This is wonderful! I don't know how I missed it, I'm greatful for the 'New landmark post thread' [Big Grin]
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EL, we must post in similar threads. I never noticed you post even less often than I do. [Big Grin]

Thanks for sharing. I already owe sndrake a big thank you for making me aware of disablity issues. Now I can add you to the list.

Thank you.

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Yes, this was great and I missed it the first time around too. Landmarks are so great, and this is one of the best ever! It's great to have you here, Ali.

[ December 09, 2004, 09:58 PM: Message edited by: Tatiana ]

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Thank-you Ali. That was a pleasure to read.

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as promised, here are some words on storytelling from Burton Blatt, a man I never met, who nonetheless had a significant impact on my life:
(slightly edited - deletion of sentences)

Some stories enhance life; others degrade it. So we must be careful about the stories we tell, about the ways we define ourselves and other people. Because beneath all explanations and controversies are at least two incompatible stories. We include in this chapter a set of "Rules for Telling Stories":


B. Those who would tell stories about other must respect these rights. They have the obligation to:

1. Listen to the stories of those about whom they tell stories.
2. Tell good and helpful stories.
3. Tell true stories. We must be vigilant because professional truths tend to be irrelevant and are usually sterile. More often than not, the injuries we inflict are by neglect and not by design.
4. Take responsibility for the stories they tell. Professionals don't enjoy such responsibility. We blame "syndromes" or our victims.

--Burton Blatt, in "The Conquest of Mental Retardation"

Thank you again for a very good story. [Smile]
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My namesake, my mother's youngest brother, had down syndrome. I never knew him, because he died before I was born, but his birthday would have been recently.



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