Living a good life – Margaret
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Margaret: I work at Myer. I work in lingerie. I got to Tai Chi on a Monday and its really good exercise.
Tuesday I go to craft night down across the road here, I really enjoy doing that. Tuesday and
Thursday afternoon I do a bit of voluntary work and singing on a Wednesday.
Singing
Margaret: I think it’s great to have a place of my own where I can you know, do things and I’ve
learnt a lot from living in my own place.
Chris (Margaret’s brother): And it’s been quite a step getting to this point here because she’s lived
with mum and dad for 40-odd years and about five years ago we kind of made the step to get her
out and living independently so it’s been really good to see.
Margaret: On Saturday the 9th of March I went with Julie to the concert in Parramatta Park. We saw
James Morrison and orchestra.
Julie (Family friend): It’s been an absolute pleasure to see Margaret become somebody who was
looked after to somebody who is now looking after herself and she’s doing it so very confidently.
Catherine (Margaret’s sister): She is really an example of what can happen if you think about people
with disability living an ordinary, full, rich, meaningful life.
Voiceover: Margaret lives a good life full of family, work and her interests. She also has a strong
circle of supporters around her.
Laughter
Music plays
Voiceover: Margaret has come a long way in recent years with the help of her “circle of support.” It
wasn’t always so.
Catherine (Margaret’s sister): Margaret is one of six so she’s been part of my family all of my life,
but I think because of the life that Margaret lived and the way that people with disability were seen
and treated and schooled and thought about historically, Margaret was part of our family but in
many ways she was also a separate part of our family. My parents were very much of the view that
Margaret was their responsibility and that the rest of us should just get on with our lives and I look
back on that now and think that did us all a bit of a disservice, particularly Margaret. It really wasn’t
until I was in my late-30s that I started to really think about ‘Who is Margaret?’ and ‘What does her
life look like and what role do I play in it?’ and the truth was back then I had no role in her life and I
didn’t know her at all.
I have a son who also has an intellectual disability and nearly 20 years ago I started working for an
advocacy organisation in NSW and so for the first few years I guess I got very caught up in learning
all I needed to learn about advocacy but at the back of my head eventually I had this little thing
saying, ‘Well what about your sister?’ and I kept feeling guilty. I suppose I started feeling really guilty
about the fact that I seemed to be responding more to strangers than I was to a person in my own
family. But it was also around the same time that I heard about the concept of a circle or a network
of support through other families that were already doing it and it just made me think well perhaps
that’s something that we could consider.
Chris (Margaret’s brother): Yeah I didn’t know what it was going to entail or how it was going to
work, so I was happy to do it but I had no idea where it was going to go or what was actually going to
be our agenda for the meeting every six weeks.
MEETING DISCUSSION: Person – Furniture purchases? Catherine – We’ve replaced the curtains
because the ones that were there were a bit daggy and the new ones are a bit better.
Voiceover: They invited family and friends to join a circle of supporters to help them do the thinking
about what Margaret’s life could look like.
Catherine (Margaret’s sister): Initially we didn’t say, ‘Please join Margaret’s circle’. What we did was
we identified about, I think it was about 17 people, and we said, ‘Please come for an afternoon tea
at our home we want to talk to you about something.’
Julie (Family friend): I think it was Pat who rang me up and asked me actually and I had known Pat
from Church days beforehand and we’d had some good long conversations and I think she rang me
up one afternoon and asked if I’d be interested and I said, ‘Oh yes, I’ll give it a go.’
Catherine (Margaret’s sister): The process was hard to get it right so we thought we’re not scaring
people off but you want people to recognise that this is a commitment.
Julie (Family friend): I didn’t ever think, ‘Oh I can’t do this,’ or anything like that. I’m just pleased
that I’ve been available and they’re happy to have me on the circle I guess.
MEETING DISCUSSION: Person - Julie, to investigate subscriptions. Julie – Yes, the next one’s a little
risqué it’s call Steaming and there’s a bit of nudity in it but I thought maybe… Chris – I’ll have two
tickets please, Julie.
Laughter
Catherine (Margaret’s sister): Having non-family members has been really wonderful and it was a
very deliberate strategy at the beginning because sometimes I think as family we get so engrossed in
it and we are so involved personally that it’s good to have other people looking on who might say,
‘Hang on a minute, why are you doing it like that?’ or ‘That doesn’t seem a good way to go.’
MEETING DISCUSSION: Person - When you cook a meal like that do you just cook it for one person
or two people? Margaret: I always make sure that I’m doing it for, I’m making two meals. I might
make it for myself and for another night. So I have enough for the nights that I’m here.
Interviewer: What does the circle do? How do they help you?
Margaret: Decide where I’ll be in five years’ time, where my life’s going to be.
Voiceover: Early on, they realised they needed to make an important decision.
Chris (Margaret’s brother): And then I guess after a few meetings we decided that one of the big
things was to get her living independently. So once our network got a bit more comfortable and we
actually worked out why we were there and what we were doing that became a major goal.
Catherine (Margaret’s sister): At the end of the day mum and dad aren’t going to be around forever
and that was the thing I kept thinking about. At some point this happy little trio is going to come
unstuck and it would be better for Margaret if something else was happening.
Julie (Family friend): At the beginning there were challenges because we were trying to find a
companion for Margaret to live with and companions weren’t easy to come by. So that was a
challenge and we didn’t think we’d be able to let her live alone. But then her sister moved in for a
few months and then she moved out and Margaret said, ‘I can do this myself,’ and that was the icing
on the cake.
Chris (Margaret’s brother): It takes plenty of support still; it takes a group like us to keep things on
the agenda, to make sure all the bills are getting paid, all that is continuous.
MEETING DISCUSSION: Person – There’s just a few other things that were on here that we just need
to talk about again is also if there was anything like a fire. We’ve talked about that, so that’s another
emergency. I’ll just remind you what we talked about. The main thing is to get out of the building so
if a fire starts in the unit, get your phone, keys and leave the unit. Call Catherine in the day, Chris at
night and go to Kate.
Catherine (Margaret’s sister): Margaret is going to be safer if she’s well-known by people who live
around her, who will look out for her and the way that we’ve orchestrated that is by supporting
Margaret to be a social butterfly. So Margaret has now hosted two Christmas parties out on the
lawn here for the last two Christmases and invites all the neighbours and the people who live next
door.
Voiceover: With Margaret successfully living in her own home, the circle is now turning their
attention to building her social circle.
Singing
Interviewer: What’s the best bit?
Choir member: Singing.
Laughter
Choir member: I love singing, I love music. I’m really in to it.
Margaret: And also being with the ladies, all the ladies.
Choir member 2: She’s the one that really lights everything up, don’t you?
Julie (Family friend): I would like to see Margaret amass a nice little circle of friends for herself. At
the moment her friends are her family and the choir people and the circle people, but she doesn’t
have a girlfriend that she could just ring up and say, ‘Do you want to go and see a movie?’ or
something like that.
Chris (Margaret’s brother): That’s been part of our goal from when we started and that’s still a
major stumbling block that we just haven’t quite achieved yet. So that’s probably the major thing
that’s on our agenda is to try and widen her social circle.
Margaret: On Friday night that 15th of March mum and came and had dinner with Robyn and I at my
place. I cooked Hawaiian chicken with rice and crème brulee.
Julie (Family friend): It’s nice now sometimes we can come to meetings and we have nothing to talk
about really, nothing serious to talk about whereas at the very beginning it was always, ‘Let’s tackle
this problem, and let’s tackle that problem.’ The problems are tackled now and that’s good.
Chris (Margaret’s brother): Being able to pull Margaret out of the family home and having her live
independently is a massive, massive achievement so we’ve done that and now we’ve just got to
continue to make it work.
Catherine (Margaret’s sister): Since Margaret’s been living in her own home, which she’s been doing
now for nearly four years, we’re certainly seeing more of the real Margaret. This is the person that
she was meant to be.
Interviewer: So if you had to talk to someone who was thinking about getting their own circle, what
advice would you give them?
Margaret: If something like that could happen for them, maybe they could be able to do the things
that I’m doing now with their life and their future.
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