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Scott's Story:  "I need you to know that it's worth it"

by David Wetherow

Moving Out, Moving On

“Can you come over and meet with us sometime next week?  There’s somebody we want to talk to you about.”  This was a bit of an unusual call.  We didn't often hear from the social worker at the local children’s institution.

“In a few weeks, we’d like you to meet Scott.  He’ll be coming home for summer vacation from the School for the Blind in Ontario.  Scott’s turning twenty-one, so this is his last year at the school, and there’s really nothing for him to do here during the day.  If he stays here, he’ll just end up doing crafts. 

“We know you folks have been involved in starting housing cooperatives and other services.  Do you think we could work together?  Create a way for him to start a new life in the community?”

A couple of weeks later, we met Scott.  He’d lived in the children’s institution from the time he was a baby.  When he was about seven years old, a visitor from a neighbouring Province who worked at the School for the Blind met Scott, and said, “I don’t think this kid is retarded – he’s just blind.  Why don’t you let him come with us, and we’ll see how his learning progresses.”

You’ve got to meet Scott to understand why he ended up in the children’s institution.  He’s a pretty unique young man, and he must have been a pretty unusual-looking baby.  For one thing, Scott is short.  One night, he was listening to a stand-up comedienne talk about what a hick town we lived in:  “I come out of my hotel room and across the street there’s a store called Mr. Big and Tall.  Now who would ever shop at a store called Mr. Big and Tall?”  Scott stood up, which meant that he got about four inches shorter, put his hands on his hips, and declared, “I sure as hell wouldn’t!”

Scott’s arms and legs are short, even for a short guy, and somehow he arrived with no thumbs and some other rather unusual features.  He has a little bit of vision in one eye.  When Scott was born in the late 60’s, the wisdom of the day was to tell his family, “It’s not reasonable for you to try to raise this child.  We have a place that will give him the care and protection he needs.”

I Need You to Know That It’s Worth It!

We met Scott and had a series of conversations with him over the next several months.  We invited him to tell us about his life, and to tell us how he envisioned his life outside of the institution.  We talked about a lot of possibilities – finding an apartment, renting a small house – and talked about the kind of support he would need to make a ‘go’ of it. 

One of the things we had in mind was finding a place where there might be a bit of ‘instant community’, so we looked at some small downtown housing cooperatives.  Scott had told us that he wanted to live downtown, where he could walk to lots of places: “My legs are really short, and I have a hard time getting on buses.  I don’t want to get stuck inside all the time.”

We found a small cooperative apartment building and did some creative ‘bridge building’ with the manager and a handful of co-op members well before Scott moved in. 

Scott figured out that he needed a roommate to help him on a day-to-day basis: “Somebody tall enough to reach inside the cupboards.”  So we recruited a good candidate from a local human service worker training program.  Scott did all the interviewing, and a couple of us ‘rode shotgun’ on the interviews, helping Scott recognize the places where one can get fooled.

He moved out of the institution in the middle of January, in 30-below weather.  On his last night in the institution, he went to the cafeteria for supper with a couple of staff.  A few days later, the members of the co-op held a welcoming party, and Scott started in on his new life.

About a month after he moved (it had warmed up to 20-below), Scott was having dinner with Neil, the government community service coordinator who had done a wonderful job of arranging funding and opening doors.  Neil asked, “How’s it going, Scott?”

Scott said, “Neil, I need to tell you that I’m scared all the time.  I’m scared that I’ll slip down a snow bank into the street.  And when I’m walking across the park that’s in front of the co-op I’m scared that a dog might come up behind me and run me down.

“But Neil, I need you to know that it’s worth it!”

How About That Job in Radio?

About a year after Scott moved out of the institution, he became a member of our board of directors.  One evening, a new member who happened to be a corporate lawyer was attending his first meeting.  Alan walked into the lobby of the building where we had an office on the seventeenth floor, and saw Scott standing by the elevators.  Scott was waiting for someone who could see well enough and reach high enough to hit the 17th floor button.  Alan took one look at this unusual young man and thought, “I’m not sure I can handle this.  I sure hope he isn’t getting off at the same floor that I am.”

Scott asked Alan to hit the button for 17, and they rode about halfway up in silence.  Scott looked up at Alan, waving his small hands in front of his eyes, and said, “Well, what do you think of me so far?”  Alan remembers that the ice-cold shell around his heart cracked.

Later, during a break in the meeting, Alan and Scott were making small talk and Alan asked Scott what kind of work he did.  Scott said, “Well, Alan, I go to this pre-employment training program every day – it’s kind of a workshop.  I clean and repackage the headphones for one of the airlines.  But it’s not really what I want to be doing. I don’t have any thumbs, and it’s hard to do it with just fingers.  And my arms are short, so I have to hold the work close to my face, and the cleaning fluid gets in my nose.  It’s not a good high.”

Alan asked Scott what he really wanted to do.  “I’ve always wanted to be in radio.  I worked in the school station when I was at the School for the Blind in Ontario, and did the same thing at Red River Community College after I moved out of the institution.  But the rehab people say that I can’t see well enough to cue records, and that no thumbs makes it even harder, so I have to do headphones.”

Alan said, “You know, Scott, I have a friend who’s in the radio business.  Maybe I could talk to him and we could see about getting you a job at his station.”

“Alan that would be great!”  

A month later, at the next board meeting, Scott came up to Alan during one of the breaks and asked, “How about that job in radio?”

Alan realized that he’d dropped the ball, and also realized that his conversation with Scott was a commitment.  [We had coffee with Scott and Alan last week, and Alan told us that he ducked out of the meeting and called the station manager on the spot!]  So the following week, Scott and Alan met with the station manager.  The station manager told Scott that people hadn’t cued records in his business for years – it was all tapes, CDs and computers now.  And he invited Scott to come down to the station the following Monday.

The crew at the radio station taught Scott to record interviews on a portable tape recorder (one of the engineers adapted the microphone so Scott could hang onto it without thumbs).  They taught him to edit tape, and Scott’s interviews started popping up at four o’clock on Sunday mornings – which, when you think of it, is where everyone starts.  On Tuesday and Wednesday mornings, Scott did pre-production work for the program Sunday Report.

Ten years later, Scott is still working part time at the radio station, mostly in customer relations.  He’s definitely one of the gang, and has done a whole variety of jobs there since he started.  It was a great lesson for us in finding someone with connections in the community, as opposed to looking to the service system for all the answers.

Evergreen Place

About four years after he moved to the cooperative, Scott told us that he wanted to move closer to Osborne Village, where he’d found one of those places ‘where everybody knows your name’.  Any Friday night, you could be sure to find Scott at a small Irish pub called The Toad in the Hole.  One of the wonderful things about Scott is that he has a great, rough-around-the-edges singing voice and a passion for the music of Stan Rogers and the Irish Rovers.

Scott gave notice at the cooperative, and moved into Evergreen Place, a high-rise apartment with an indoor swimming pool and a weight room.  Scott started swimming every afternoon, worked out a new route to the radio station, and began making friends in the building.

By this time, Scott had hired his third roommate – a fellow who played semi-professional football for the local team.  Scott had learned (and taught us) a great deal about finding roommates with whom he shared interests, and getting the relationship to move quickly beyond ‘taking care of Scott’.  The football player brought other football players (and their girlfriends) into Scott’s life, and life moved on.

The fourth roommate turned out to be pretty cranky. Scott’s words were, “He wasn’t there for me.”  He and Scott got along alright, but he had a pretty strong pattern of keeping other people away.  That lasted a bit less than a year, and Scott decided that he wanted to try living ‘on his own’ – without a roommate.

He waited until it was time to renew his lease, and negotiated for a one-bedroom apartment in the same building.  Everything else stayed in place – the Toad in the Hole, swimming every morning, the job at the radio station.  Scott traded the support contract with a roommate for some occasional heavy cleaning, made arrangements for some of his meals with Home Care and Meals on Wheels, and got on with the next phase of his life.

We’ve thought many times about the difficulty that a traditional ‘residential service’ would have had in keeping up with the changes that Scott wanted to create in his life – three apartments, four sets of roommates, finally working out a way to live alone but not in isolation.  Separating the provision of services from housing was one key.  Listening was another.  And working harder on bridge-building than on ‘life skills’ was a third – it gave us all confidence.

Rise Again

It hasn’t always been easy.  Scott had some hard work to do with his family, in terms of getting them to accept his independent lifestyle and also in coming to terms with the question that had been haunting him ever since he was a child: “Why didn’t you take me home when I was a baby?"

One of Scott’s ‘standards’ at the King’s Head, where he now sings with a band called The Tarry Trousers, is a song by Stan Rogers’ called The Mary Ellen Carter.  He brings the place to its feet at least once every Friday evening when he raises his arms and sings:

Rise again, rise again

Though your heart may be broken

     and life about to end.

No matter what you’ve lost,

     be it a home, a love, a friend,

Like the Mary Ellen Carter,

Rise again!

 

© 2003 David and Faye Wetherow ! CommunityWorks

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