I am a volunteer live-in assistant at L'Arche Cape Breton. L'Arche is a Catholic-based intentional community for mentally handicapped adults and the people who help them. Our mission is to live together like a big family, each with their own work and recreation, and the more able people helping out the less able people where needed.

When I got here about a month ago, I expected that a simple, rural lifestyle would give me lots of opportunity to work on my musical skills, and I expected that my fiddle, guitar, and voice would be good ways for me to spend quality time with the handicapped folks. But oh my God... I didn't know the half of it.

As the community leader here said "Some of the people here centre their lives around music and food, and for the others, it's food and music." Many of the folks have instruments (or multiple instruments) and many others dance and sing at the drop of a hat. There are two folks who play air fiddle every time they see me. There is one woman who has a set of harmonicas and plays them constantly when she is walking around or saying her prayers. There is another woman who bounces up and down and yells "Yes! Yes! I'm so happy!" when I play a song that she knows. There is a man who, despite autism and a quite severe mental handicap, has a passion for guitars - he will stare intently at anyone carrying or playing a guitar, and keeps track of what rooms guitars are kept in and tries to sneak into them (unfortunately, his passion for guitars can be a little violent so we have to guard them from him). Doing the dishes after supper almost invariably involves a very loud radio and people dancing around the kitchen. Every day, and sometimes more than once a day, I jam with a couple of guys in my household. Singing during community masses or meetings, and campfires, and living room jams with guests from other households are all regular events.

Here are some of the musical lessons that I have learned here:

1. I have learned what a jam is. When I say that I jam with the guys I live with... really, I am the only one who knows anything about how to play, but my roommates just live for the chance to whale away at their guitar and fiddle while I'm playing something. Although this is quite different from the jams I've been used to before, I realized that it is what a jam should be: everybody is welcome, and everybody brings the best that they can. I should also mention that it is always me who brings the jam to an end... the guys are always ready to go on playing. I also reflect that there have been musicians willing to play along with me whose skills exceed mine by just as much as my skills exceed these guys'.

2. I have learned what a musician is. Let me tell you about Dave, one of the roommates I mentioned above. He has both Down's Syndrome and Alzheimer's, but one thing that he never forgets is that he is a proud Cape Breton fiddler. A brutally frank assessment of his chops would be that he knows which hand to hold the fiddle in and which hand the bow, and not much else. However, he greets me every morning by saying "You and me play violin," and I have to remind him every morning not to bring his fiddle to work. He plays air fiddle every time he hears a fiddle on the radio or a tape. He has a fiddle that his late parents gave him, and every time he plays it he starts by solemnly stating, "A violin is not a toy," and he kisses is goodbye when he puts it back in the case. When he plays along with me, he bows agressively, counts in the tunes, taps his feet, and cheers when I start to accelerate a tune or start droning strings.

I think about Dave when I remember a thread we had here once on what made somebody a musician. Does he suck? Absolutely. But is he a musician? Absolutely.

3. I am learning something about playing under adverse circumstances. The folks with instruments love to jam along and it can get pretty noisy, so I'm getting used to playing without being able to hear myself. Also, I'm learning to take in stride while playing if people suddenly hug me, or want to touch my strings or bow, or dance so close I have to dodge, or spit on my fiddle (it's happened once)... and I'm getting used to playing guitar under the intense scrutiny of the guitar-smashing gentleman I mentioned above, and taking it coolly when he escapes his assistant's attention and comes and takes a swipe at me.

4. Unfortunately, I am also learning something about how musical elitism is part of human nature. Dave and Gary are the guys I jam with daily, and there's another roommate, Trevor, who normally just wanders in and out the room when we have music, not paying it much attention. But a few days I ago I convinced him to try the harmonica, and he got really into it, dancing around and tapping his feet and playing runs up and down. I was thrilled... but then Dave and Gary were glaring at him and telling him to shut up. Although Trevor could, in an objective sense, play harmonica just as well as they can play guitar and fiddle, nonetheless they are dedicated musicians and he was just fooling around, so he wasn't welcome.

Marion

One friend knows the lyrics to every 50s record ever published. It gives her such joy.

The school accepts donations of used instruments for their orchestra. Recently, I found a flute for them that turned out to be worth something. They sold it and bought much needed refurbs.

If you enjoy your work even half as much as the people benefitting from it, you must be a happy lady.

V

I have been thinking a lot about what kind of living situation Corrina would be in as an adult. One thing I definitely have wanted is for her to be in a living situation where people are playing music. She is somewhat of a musical snob, i.e. she knows the difference between good music and bad music, no matter what genre. She has always had incredible understanding of intonation, and also of subtle stuff like vocal ornamentation. In fact if any of you have ever read the liner notes to one of Kate Brislin & Jody Stecher's album in which they mention a small child who identified the Stanley Brothers as Kate & Jody, that was Corrina.

Anyway reading your messages gave me hope that we could eventually set up something for her once she is an adult that could include music. The folkie community is truly incredible! Suzy Thompson

We work with many people who are unable to communicate verbally but are in no way mentally impaired. With communications devices like Prentke-Romichs Liberator, which has Blue Hawaii programed into it, and The Dynavox and DynaMyte by Sunrise, Inc. many of these people are learning to speak. Some folks are writing eloquent poetry and still others are writing lyrics. Once the incredible potential of personal communication is unlocked, hidden artists are coming out of the darkness that was caused by a Devlopmental Disability diagnosis.

With the newly developed voice synthesizing software and midi interfaces for computers, there is no reason why people who are with out vocallization abilities shouldn't soon be singing their own songs with their own voices.

Don

When I was in l'Arche for a few weeks in Kent, many years ago, we had all kinds of visitors from l'Arche communities from mainland Europe coming through and visiting - and one of the things that struck me was that people with learning difficulties were so very much of their own cultures - I mean the ones from France were so French you couldn't believe it, and the same for the Italians.

"Some of the people here centre their lives around music and food, and for the others, it's food and music."

I love that. Sounds like my daughter, who's autistic - except with her it'd be "sometimes her life centres round music and food, and sometimes the other way round."

But nine times out of ten, if she cries at night, it's music, and not just any music. It might be Frank Zappa, it might be Gregorian Chant, it might be Mozart, or Vin Garbutt, or Ravi Shakar. You have to work out the right one, and be ready to keep changing till you hit the spot.

What drives me crazy are day centres and residential places where the staff just stick any old sound on and turn their backs on it all. Used to make her angry too, till we managed to get something better set up.

The general term I prefer to use, when it's necessary to use a general term (and most of the time there's no reason to - people have names) is to talk about "people with learning difficulties" - though of course sometimes the people with the biggest difficulties in learning are the people in charge of organising services.

And it's not a matter of "political correctness" - it's the idea that you should treat people with respect and courtesy. I've been told often enough by people who've been called "mentally handicapped" or "retarded" that they don't like those labels. But of course the crucial tbning that matters is the attitudes that lies under the labels - and there are people using less offensive words in such a way as to ensure that sooner or later they will have the same insulting quality as the old ones they replace. And people using the old labels can have precisely the right attitudes.

Don

But I think it's important to accept the judgement of people directly affected, and there are plenty of people with learning difficulties who are very articulate and determined about this, and that's where I takle my lead. I'm not going to use a word that offends the person it's used about. And I won't use it about people who are less articulate either, like my daughter.

I like the sound of Don's aunt, and the bridge metaphor. Here's a link to Inclusion Press, a site with some good stuff about people who have been doing a lot to reshape attitudes and the way services are organised.

Barn dances can be a great thing in this sort of context -I remember at a folk festival barn dance seeing a couple of young people with Down Syndrome having a great time, and opening a lot of minds, as the structure of the dance meant they kept on changing partners, which meant pretty well everybody got to dance with them.

Spaw

For Advocacy, the link I gave you is a good one. So is Values into Action, which is a bit more local - it used to be CMH, but changed its name, for the kind of reasons that came up in the thread. VIA have contacts with just about anything that's going on that's relevant and useful.

I've seen kids 2-3 years old try movements they've never done before while their moms watch with eyes wide open, because they like the sound of the music..... motivation!!

Keep up the good work, Marion. There is lots of information out there to help as well. Check with your local library or university music dept for journals/books on Music therapy. There is a big rescource there to be used....

Musicman

Whether we work with the mentally handicapped or not, whether we play music or not, we all have many opportunities each day to perform little miracles. Sometimes, we recognize them for being miracles, and it amazes us.

KT: here's another possible idea for you, if you play a guitar or another instrument that this could apply to. I often play "cooperative guitar" with Maggie, one of the folks here at L'Arche. She doesn't sing, but there are clearly some songs that are her favourites. What we do is sit facing each other; I hold the guitar and fret the chords to one of her favourite songs, and she does the strumming. If she stops strumming, I stop singing, then continue the song when she starts again (my idea is that this will give her incentive to keep the rhythm up, as well as give her the sense that she is doing the singing: although it's my voice, it only comes out in direct response to her actions).

My little nieces and nephews enjoy cooperative guitar as well.

McGrath: Tell you more about L'Arche? What do you want to know? Our community's homepage is www.larchecapebreton.com (and anybody! If you're coming to Cape Breton, do drop by - we're close to the TransCanada - and bring your instruments.)

Thanks for making me think harder about nomenclature. Your philosophy makes sense to me: that attitude is more important than terminology, but since you have to use terms you should try to use the most acceptable one to the people most directly affected. I wouldn't call somebody Dave if it was evident that he preferred David - but in the absence of such evidence, I assume that there's nothing offensive about Dave. I thought that "mentally handicapped" was as generally acceptable as Dave, but if you say that's not so I'll have to investigate further.

I just checked L'Arche's constitution and the term there is "mentally challenged". Here at L'Arche Cape Breton we call the people in question "core members" in theory and "folks" in practice.

Musicman: thanks for the music therapy link. I had read it in the past and I imagined that when I had been at L'Arche this long, I would be adding to that thread and saying wise things about how my musical life was affecting the folks. Instead, I had to start a new thread about how the folks' musical life was affecting me.

This brings me to lessons number 5 and 6 that I didn't have time to write up last time.

5. I have learned something about what a music therapist is. Let me tell you about Eric, another assistant here who sings and plays guitar and bodhran. As much fun as my jams with the folks are, it's a whole other world when he's around. My muse makes me dance and play and sing - and those who are so inclined join in with me - but his muse makes everybody in the place dance and play and sing. He has a great gift for passing around the shakers and harmonicas and whistles and spoons and getting everybody involved, and you can feel the party ending when Eric has to leave. But he just laughed when I told him he should be a music therapist - the thing is that he can't read a note, doesn't know what makes a major chord different from a minor chord, and didn't know that chords tend to come in 1-4-5-6minor combinations until I told him. In the past I've looked at a few school's music therapy programs, and you had to be accepted as a degree student in music (meaning some level of expertise on a classical instrument) and then you could specialize in music therapy if you had finished certain grades in piano and guitar. So in spite of his social gifts and intuitive handle on music, I don't think he'll be getting into any music therapy program anytime soon. Three chords, the truth, and the right kind of beer moistening your bodhran won't cut it.

I suppose if he really wanted he could learn to read, learn classical piano and guitar, and learn theory to become an official music therapist. But I think that he already is a music therapist - that three chords, a bit of love, and a bit of Guinness can be just as powerful as highly informed and skilled music.

And I think of myself - I don't have Eric's social gifts or his ability to play spontaneously by ear (which I'm sure would be very helpful to a music therapist), but I like to think that I have done a little good in people's lives with my musical efforts. Besides Maggie and the other L'Archeniks that I play with now, I have often taken my instruments to the homes of elderly/shut-in people to bring them some cheer. My father died in January, and his last few weeks were divided between extreme confusion and a coma; I sang his favourites to him for hours, and at other times put on a tape of himself leading a sing-a-long at a local nursing home (something he did faithfully for over twenty years. Actually I learned a lot about the power of music from my father - but that's another post).

So can I call myself an unofficial music therapist? And do I have any hope of becoming an official music therapist? I wonder if the two schools I looked at were bad examples and you don't really have to be a highly skilled classical musician to get into a music therapy program.

5. I have learned that I don't really want to be the best musician around. Eric is leaving in a couple of weeks, and besides being sad at the departure of a friend I find that I am not looking forward to having to do without him musically. At community events, he plays the guitar and I play the fiddle - but when he's gone I'll have to play the guitar myself, because the guitar is necessary and the fiddle is a luxury for our purposes, even though my heart is more in the fiddle. Also, I will miss having a superior musician around to teach and inspire me and force me to keep broadening my horizons.

Mudcatters, forget my invitation to come visit - instead I want you to come move in here!

Marion

Marion, you have just summed up in a sentence the simple and straightforward truth about a debate that grinds on endlessly in all kinds of places, and gets people hot under the collar.

You wouldn't like to do the same thing with the Mudcat's perennial "What is Folk?" discussion would you? No, better not. It's one of the rituals that keeps this place going.

The Cape Breton l'Arche website is great, and it's in my favourites now, and I'll stick a link to it on my own website. Only thing missing is a set of links to other l'Arche sites. And maybe a sound file of you and Eric and Maggie and company...

The kind of nonsense you mentioned about "music therapy" is familiar enough. You get the same sort of thing around all kinds of "therapies", totally inappropriate professionalisation. Ivan Illich wrote some very insightful stuff about this kind of thing. So has Jean Vanier in another way.

(Jean Vanier related story: we once had a friend who was a nurse, with a great gift for getting enthusiastic about new ways of seeing the world - and one day we met her and she said she'd come across this great woman writer called Jean Vanier. We tactfully told her it was the French type of Jean, and that he was a man...)

I've never met anyone with leartning diffulties, or any relative of a person with learning disabilities who doesn't hate the term "retarded".

"Nigger" was also in its time a straightforward descriptive term without any insulting implications. "Yid" is just the Yiddish for Jew. But these words have been used too often as insults, and in a context where people have been treated as less than human - they are no longer usable. And the same goes for "retarded" - it has the same impact on people as "Nigger" or "Yid"does.

I'm writing this in England. Maybe in America it's different - words can have different meanings and implications in different places.

As Marion put it so succinctly: "Attitude is more important than terminology, but since you have to use terms you should try to use the most acceptable one to the people most directly affected."

Musicman, thanks for the link. I am another who would like formal training in music therapy, but have been intimidated by the classical training requirement...

Regarding labels....I have a friend who uses the term "differently abled." While it doesn't "define" it certainly honors the individual. I like that.

The problem we are talking about is people being discriminated against and excluded because they are different.

The only reason labels are problematic is because they are used in the context of this kind of dicrimination. "Quaker" and "Methodist" both started out as intentionally insulting labels. "Cretin" started out as a supportive label.

Learning disability seems, for the present a reasonably satisfactory label, insofar as any label at all is appropriate or necessary, which it very rarely is. The fact that it covers an enormously wide range of abilities and disabilities is ok. It makes it harder to use as an insult. "Label jars, not people."

The relevant question about an individual should never be "do they fall into this pre-determined category?" but "what needs to be done in order to make sure that this person can get by?" And much of the time when you ask it that way, it's not so much the person that needs to change, it's the people and things around them.

What this thread seems to be confirming to me, is that, THEY (which ever term you prefer) are pretty much the same as WE are. Using music to express feelings, with the same enthusiasm. Not only music but drama, dance, visual arts and more.

Is that really such a surprise?

What happens to us as we grow up, that the society we form part of, generally views this process as in someway, remarkable or strange, in anyone else but children?

As children we sing, paint, act and dance, quite naturally. We then seem to reach a point where we feel there is a choice to be made and that we have to make it. A choice to leave the singing, painting, acting and dancing to just those individuals who show great skills in these areas.

We don't think we have a choice not to use other skills, like arithmetic and grammar, or leave them to those who are particularly good at them? We may leave Quantum Physics to the Einsteins but we still continue to conduct lesser calculations ourselves.

Is this approach an inevitable part of growing up or more a result of our experiences in those institutions of learning, we call schools? Institutions that reinforce the view that a vital part of all of our individual make-up, is in some way optional?

I believe, in truth that this view is changing, but that the damage has been done.

Maybe that's what's really different about folkies - because most of us refuse to make that choice, at least so far as singing and dancing and playing instruments. That's the reality that underlies all our milling around each other arguing about "what is folk".

One of my favourite quotes is by G.K.CHesterton. "If a thing is worth doing, it is worth doing badly."

"I'm a terrible clumsy walker - I'll just sit down instead... And I'm a very inelegant eater, I'm not having any more meals...And as for the way I breathe..."

Spaw

"Anything worth doing is worth doing badly" is not the opposite of "Anything worth doing is worth doing well." They both are corollaries of the basic principle that anything worth doing is worth doing for its own sake, whether you do it well or badly.

She was sitting in the town centre by the fountain with her son. Now, her son is in his thirties, and he's got epilepsy, and he can't talk too well, and he is pretty unsteady on his feet, and so on.

And there were a couple of well dressed young men - visitors to the town by the look of them - and they were were sitting nearby, and after a while she noticed that they were looking at her son, and imitating some of the things he said, and giggling.

And also nearby there was a pretty rough looking skinhead, rings in the nose and tattoos, and that kind of stuff, and big boots. And he was listening to what was going on. And then he gets up and he walks over to the jokers, and looks hard at them and tells them to "push off" - except he didn't exactly say "push off". And they pushed off quite rapidly.

And then he goes over to my friend's son, and shook his hands and said "You're all right mate!" And he marched off.

As my friend said "It makes you proud sometimes to live in Harlow!"

It was dinner time, which was a big communal thing, sitting round a big table. One of the high points of the day.

Well, the pudding came around. And there was some mix-up, because a couple of people were serving, and I found myself with two helpings in front of me. And I was just looking down at them with a pleased surprised expression on my face, I suppose. And a helper swooped down and took one of the helpings away.

Well, I didn't really mind, though it was a good pudding. But I must have shown a flicker of dismay, because one of the core members of the community, who'd spent many years in a subnormality hospital (that's another of the charming terms they used to label people with), was watching me. And he came over, and he touched my hand and said "Never mind" (which was a long sentence for him) - and slipped two cigarettes in my breast pocket.

So often people talk as if being sensitive to other people, and aware of how they might be feeling is something that's associated with being clever and competent and so forth. And it's so far from being true it's laughable.

A link for L'Arche Canada is www.larchecanada.org If you click on "Contact us", you will be offered lists of L'Arche communities, with their websites if they have them.

In a vision meeting our leader talked a bit about terminology. She said the the most important things were to resist the temptation to call adults boys and girls, and whichever term you use to describe the disability, you should put the person first (i.e. a man with a mental handicap, not a mentally handicapped man).

Marion

The crucial thing with words like boys and girls is that the same ones apply for people whether they've got any kind of a disability or not.

So I'll admit to referring to my son, who hasn't got a disability, as a boy, even though he's only a couple of years younger than my daughter (who was 34 today); and I find it more natural to refer to her, and to the care workers who share her life, as "girls" rather than "women".

But I'm strongly against any way of talking about her as if she was a child, and I've often got into arguments about that wit other parents. Of course the thing is there is an ambiguity about the word because although your son and your daughter will cease to be "a child" omce they are past a certain age, they will always be properly described as "your children" until the day you die, even if they win a Nobel pPrize.

And it's always "people first", and everything else a long way behind.

Thanks for the l'Arche links. Here's a link with lots of interesting stuff, and other links. Since it's Canadian you'll likely have come across them already.