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DO WE LIVE TO WORK OR WORK TO LIVE?

By Evelyn Scott OAM and Kylie Scott


Evelyn:       We are born, we go to school, we study, we get a job.  The world expects us to get a full-time job so that we can support ourselves and so that we do not have to live on a pension or depend on our families to help us.  But is a full-time job the be-all and the end-all that we should all aspire to?  That is the theme of our talk today – Do we live to work or work to live. But, at the outset, we might discuss Kylie’s background to set the scene.



KYLIE:      Hi everyone. Firstly, let me thank you for inviting Mum and I to speak here this afternoon.  Although we have spoken at other conferences, this is the first time we have been sponsored to speak – and that is very exciting!  It’s very nice to be here in nice, warm Brisbane!

Earlier this week we went to a dinner at which Brennon Dowrick, a former Commonwealth and Olympic gymnastic representative and medallist, gave a fabulous talk.  As part of his talk he did some routines on the pommel horse.  Although I hope you will find our talk interesting, I promise you that I will not try to live up to his demonstration.  I am certainly not as fit as he is and my body is nowhere as impressive as his is!  

But to get back to my history, I am now 24, and I have Down syndrome, as you perhaps know.  I was born in Melbourne, but I have lived in Canberra since I was not quite 2 years old.  Mum tells me I went to early intervention programs to help me get started in life.  Then I started my schooling by going to preschool at a special school.  Next I went to my local area preschool and progressed to my local primary school.  My parents wanted me to be able to learn to live with and participate in my local community.  School support did not exist when I started at my local school, so for several years my parents paid for a friend to act as my class aide so that my parents would know what I was learning at school and what I needed to practise at home.



Evelyn:       Kylie has always been eager to learn.  She enjoyed playing ball and other interactive games, and she loved having books read to her.  Kylie’s older sister, Linda, was always a good role model in that regard, so Kylie from an early age has had what I would call a great work ethic.



KYLIE:      Reading books, making up stories on car rides, singing funny songs – you name it – I’ve done them all!



Evelyn:       Don’t I know it! The rest of us didn’t always see the joke, but Kylie was more than likely able to see something funny in every situation.



KYLIE:      I still reckon I could be the next Celine Dion – if I could only find the right agent!



Evelyn:       But to get back to our subject – and to forget the things we might like to dream about, Kylie and I recently have been discussing what are the important things in life – the real things.  As children, we don’t even think about what’s important to us – but we do know that our families are very important and that our friends, too, are important.  And along the way we learn that our behaviour is important – how we treat our families and our friends, and how we get on with people generally.  And we also have to learn what is important to each of us so that we can each lead the life that is right for us.



KYLIE:      As I have got older and become more independent in some ways, I have come to understand that being able to manage my own life as much as possible is really important to me.  After I finished year 12 at school I went to the Canberra Institute of Technology, or CIT – but you probably call it TAFE.  I did office and computing subjects there.  I enjoyed the more adult learning atmosphere and the freedom that came with it.  I obtained some modified passes in several subjects and was awarded some certificates but, as I progressed, a couple of the subjects really became too hard for me. So, after talking about it with Mum, I gave the study away.  Throughout this time I was also getting some paid and unpaid work experience – at Pizza Hut (UGH!), at a Coles supermarket (boring), and even for a week in the office of the then President of the Senate, Margaret Reid, which I really enjoyed.



Evelyn:       These years were fairly stressful ones for Kylie in many ways. As well as the more difficult study and the differing job experiences, Kylie’s father made the decision to leave. Fortunately we had access to excellent youth and other counselling services over time which gave Kylie some of the understanding and support she needed to look at her life and at where she wanted to go.



KYLIE:      I stayed busy, though. I did some paid office work with the ACT Down Syndrome Association for a while.  I also did some drama courses, including some with NIDA, and the role-playing helped me with my self-expression.  Mum reckons I always was a bit of a drama queen!



Evelyn:       Kylie over the years has had a go at many things – art, writing, poetry, swimming, tennis – you name it.  We are very fortunate to have around us in our local area so many opportunities to be creative and active.  We have lived in our suburb for most of Kylie’s life so she is very well-known at our local shops, for instance.  In the end our community is a great support for us all.  It’s always nice to go out and find people to say hello to and to be greeted in return – and to meet up with people to have a cappuccino with!



KYLIE:        Then I was fortunate to get a real job – with Environment Australia in the National Greenhouse Office.  For a year I was part-time casual but then I was made permanent part-time – and I have worked there now since 2000.  I really enjoy my workplace – and my work is very important to me.  I like learning to do new things, and I enjoy being with my colleagues.  It makes me feel good about myself when I realize that I am being useful and that I am able to do my job properly. I like dressing smartly and feeling businesslike. I work for 8 hours a week – but we’ll talk more about that in a minute.



Evelyn:       For most of my working life I have been a court reporter or a parliamentary editor.  I have also done lots of voluntary work since Kylie was born – particularly for people with Down syndrome.  I have always enjoyed my ‘real’ – that is, my paying - job.  Although it has been difficult and challenging at times, I have been proud of being able to do my job well.  And I have enjoyed working and mixing with many different people.  So I know how important one’s work is to one’s well-being.

I’ve also particularly enjoyed being able to assist people with Down syndrome and their families.  Because we knew how important it had been in Kylie’s development, it was important to our family that educational opportunities for children with Down syndrome be provided as of right – as they are for all other children – rather than as a privilege for some children with Down syndrome whose parents were sufficiently motivated and empowered to insist upon it.  

The trigger for this passion arose when we were advised, when Kylie was being assessed for school placement, that the ‘experts’ would make that decision for us and that we would not even be invited to attend that decision-making meeting.  As we had put considerable thought into the schooling options for our older daughter, we were shocked to be so excluded when, it seemed to us, the decision was ours and ours alone – and that it was an even more critical decision for us considering Kylie’s needs for her future.



KYLIE:      When I was young, it was good to be able to have my family organise everything for me.  I went to school and had lovely holidays and lots of good times because those things just happened for me.  But now I know that it’s up to me to make decisions and to organise lots of things for myself – that I can’t expect my family or other people to be responsible for organizing for me or for making sure that I have good holidays and fun times.  

I have also learned that it is important for me to speak for myself – that I should think about things and then express my view.  That has not always been easy:  people still get impatient when I don’t express myself too clearly.  But, as Mum says, we all have to learn to be patient and we all have to learn to just keep trying.



Evelyn:       Most of us don’t even think about having to take on the responsibility of making decisions for ourselves – it just happens that way.  When we move away from home we might struggle at first and call on our families for help, but usually we can get our heads above water before too long and get on with sorting out our lives.  Because young people with Down syndrome grow up needing more support to maximize their potential (if I can use that well-known phrase), as families we probably assume too much of a decision-making role in our young people’s lives.  As with all adolescents, our young people with Down syndrome reach a stage when they want to make their own decisions – although they don’t necessarily realize that this also means, of necessity, making their own mistakes.



KYLIE:      But they’re not always MY mistakes.  In the last 2 months I have had my purse stolen twice – once at a bus interchange and once from my bag in a room where I was doing a course.  The first time Mum did it all for me – made the phone calls to cancel my visa card and my Centrelink pension card and helped me to replace my other cards.  But this time – wow – I did it all myself!  I don’t know that it helped Mum’s blood pressure very much, but I have certainly learned what to do now if it happens again!



Evelyn:       And then there are the times when as a parent we find it difficult not to interfere when we watch decisions being made that we would not necessarily agree with.  I’ve become pretty good, I reckon, at holding my breath when something happens – but it’s pretty hard then to keep my cool and help out when the problem solving has to be undertaken.  Buying a totally unsuitable item of clothing and convincing our son or daughter to take it back to the store and get a refund is about the easiest of the hurdles we have to overcome!



KYLIE:      I like wine.  Sometimes I like having several glasses of red wine.  I have learned that sometimes this makes me rather hot and whoozy.  And Mum tells me that when I have more than 1 glass of red wine I also get argumentative and rude.  Mum tells me it’s my decision:  if it is important to me that I have several glasses of wine then I have to be responsible for the way I end up feeling and the things that I say or do.  



Evelyn:       These are hard decisions for parents and for young people, and particularly for people with Down syndrome.  It’s not hard to look around us in many situations to see people doing things we would not do, yet it is not our job to tell other people what they should or should not do.  Why shouldn’t people with Down syndrome also sample the wine – ‘the things we would not do’?  

Recently I congratulated a girl with Down syndrome on turning 18 and said to her that she could now vote. But her mother quickly said that she was not going to organise for her daughter to enroll to vote because she wouldn’t be able to make much of a decision.  I must admit I was somewhat taken aback, but I did think to say, ‘Well, I am sure there are many people out there who vote for people for all the wrong reasons but, in the end, they’re still entitled to have their say.’  And it was only later it occurred to me that we all legally have the right to vote in any event.  

It might make our lives as parents easier to take that control away from our children, but when I look back I have to admit that some of my most valuable learning curves followed on from what others might deem to be gigantic mistakes.

But to return to looking at the things that are important to us, Kylie and I discussed whether Kylie felt ready to make some decisions about her future.  We discussed whether, if Kylie could think about the things that are important to her, we could then work toward achieving them. As we all know, some of us just muddle along and hope that things will fall into place for us.  Unfortunately, from my voluntary work with the ACT Down Syndrome Association, I have observed that many parents of children with Down syndrome find it easier to hope that something will turn up in the fullness of time.  And it still surprises me that there are so many people out there who just assume the service or activity they want to access for their son or daughter already exists!  Parent networks have brought about lots of change – but weekend social activities and transport to them for people with Down syndrome are still awaiting the right time and initiative on someone’s part to bring them into being!  But I’m off the track again …

Earlier this year, while driving to Sydney, Kylie and I decided it was time to look at where her life was heading, so she wrote down some dot point notes that we could refer to.



KYLIE:      First I noted down my goals.  At this stage of my life I want:

·                    to live independently

·                    to work full-time

·                    to meet new people and to have fun with my friends

·                    to continue working as a volunteer

·                    and particularly I would like to have a close friend to talk with.



Evelyn:       Earlier this year my goals were simple – to retire and to do all the things I hadn’t so far had the time to do!  Aren’t I lucky – I achieved retirement status last week but, as people warned me, I’m discovering I’m busier than ever!  



KYLIE:      But I’ve discovered there are a couple of things interfering with my goals, such as

·                    finding the right place for me to live in, away from my family, is not easy

·                    I have not yet been able to get full-time work

·                    I rely on others – particularly Mum – for support, so I am not as free as I would like to be

They are the downsides, but one of the good things is that I can continue doing volunteer work.  I am the ACT Down Syndrome Association’s Awareness Spokesperson.  Being a role model and helping people to learn about Down syndrome is important to me.



Evelyn:       And I’m hoping now to have the time, as President of the Association, to liaise with other state associations in order to establish a federal link for us all, initially by email, culminating in a conference on Down syndrome in Canberra next August which will provide an opportunity to ratify a national body.  Oops, I’m digressing again …



KYLIE:      To live independently – which is my first goal – I need to be able to afford to pay rent, either in shared accommodation or on my own. But, without a full-time job, I can’t afford to.  I get paid for 8 hours work a week, and I get a part disability support pension.  And Mum tells me that if I earn more money – which I would really love to do – my pension will be reduced.  But I still would like to work more so that I can be like everyone else.  I would like to be able to WORK TO LIVE.



Evelyn:       As I said, I can understand all the reasons why Kylie wants to WORK TO LIVE.  I would love to help Kylie achieve her goal.  But, as Kylie and I have discussed, I am not able to pay a deposit on a home for Kylie to get her started; nor is she able to afford to pay off a mortgage.  Some families are fortunate and are able to buy a home for their child and are then able to get the right support in place – live-in or otherwise.  Government housing in the ACT has long waiting lists and, even if Kylie’s name came to the head of the list, it’s highly unlikely that the offered accommodation would be in our area – and we have decided that staying in the district we know will be critical to Kylie successfully moving out of home.  The last thing we want to do is to set Kylie up in independent living arrangements only to have them fail – as we have seen happen on many occasions.

Even if Kylie could manage to save money with the idea of saving for a deposit on her own home, it would not be too long before her savings would reduce her pension.  So there is a bit of a catch 22 situation there.  But for all the right reasons, full-time work for Kylie at this stage of her life would be wonderful.



KYLIE:      It’s important for me to know that I can support myself, that I can learn new things, that I can meet new people, that I can feel useful and valued, that I can pay tax so that the government – whoever wins on 9 October – can run the country – and so I can have fun holidays and do the things I want to do.  I’ll get to see Celine Dion in concert in Las Vegas yet!!



Evelyn:       There’s also the fact that Kylie, even if she works full time, is not likely to have much chance to climb up the corporate ladder – that is, her earning capacity will never be high (unless she wins a lottery – which reminds me, we’d better buy a casket ticket while we’re here).



KYLIE:      And Mum tells me there are other things that I must remember.  Full-time work might help me get the money to move out of home and rent my own place and support myself.  But what about my other goals?  If I want to be independent, this will mean

·                    doing my own shopping

·                    doing my housework and laundry

·                    managing my bills

·                    continuing my tennis and gym activities

·                    having a social life

·                    doing volunteer work

At the moment I can do all these things because I work part time, because Mum is my driver and helps me to organise.  If I work full time maybe I will still need help to organise my everyday living needs.  And that means that I will not be as independent as I would like to be.



Evelyn:       So it’s crunch time.  How do we prioritise? Is it the full-time work goal or the independent living goal that should take priority?  Or is it friends, socializing, sport or a ‘soul mate’ that we should be working toward?



KYLIE:      I’m stressed just thinking about it all!!



Evelyn:       So what do we do?  Maybe we should take a deep breath and take a step back.  Kylie, my friend, I think you’re stuck with me for the time being, so you might as well try and get that full-time job.  While you have me around for support I think it would be great for you to have the experience of working a full week and of working a full week, week after week, month after month.  The extra money will perhaps give you the chance to look at living independently.  But it will be important for you to maintain a balance in your life and to continue your other activities so that you meet new people and have fun socially and keep fit through your tennis and gym activities.



KYLIE:      I’ll be busy!



Evelyn:       Yes, and so will I, no doubt – as program director and chauffeur extraordinaire!



KYLIE:      So what’s next?



Evelyn:       Well, as you know, after we had this discussion earlier in the year, we thought it might be a good idea, to keep your job support agency interested and motivated to get you more work, for you to go back to CIT and do some further study.  Now that you’ve gone back to CIT, are you enjoying studying again?



KYLIE:      Now I am older and in a real job I can understand more about occupational health and safety, so I am finding that subject interesting.  And I have been told that, if I can redo some of the subjects I got modified passes in originally, I might be able to qualify for a diploma.  So I am doing word processing again and that is pretty straightforward now as I’ve done lots of computer work in the last few years.  It might take another year or so, and I will still need help, but it would be nice to be able to get a diploma at the end of it all.



Evelyn:       And I understand your workplace and your job agency are pleased to know you’re helping yourself in this way, and that there’s the possibility your working hours may be increased.



KYLIE:      Yes, and I feel pretty pleased that I am able to prove to myself and others that I can still learn and improve my skills.  



Evelyn:       And, with an ACT election just after the federal election, it is interesting to see how many disability issues are being discussed in our local media.  So it’s a good time to keep an ear to the ground on the independent living front too.



KYLIE:      So if I can get full-time work, and if I can get to live independently – what then?



Evelyn:       You’ll be rather busy, that’s for sure!  You’ll still have the shopping, the cooking, the washing, the ironing, the bills, the housework – yada yada yada!



KYLIE:      I’m getting stressed again!!



Evelyn:       You’d better take another deep breath and think about things one at a time.  You’re pretty good at shopping for food – even if you do bring home raw chicken wings because you think they’d be good for afternoon tea at a jewellery party!



KYLIE:      I like chicken wings!



Evelyn:       Anyway …  

And your cooking isn’t bad, particularly your savoury salsa hamburgers!  You’re getting much better at following recipes – but it does take time, doesn’t it?



KYLIE:      Yes, but it’s fun.



Evelyn:       Then there’s the washing.  Luckily we have machines to help us do that, but the washing still has to be hung out and brought in – and the ironing is important, particularly making sure work clothes are presentable each day.



KYLIE:      And the housework.  I like tidying up and making our home look good.  You’ll have to get onto all those papers in the study, though, Mum – there’s lots of clutter there.



Evelyn:       I agree – but that all takes time, as it will for you, too.  



KYLIE:      You’re stressing me again!



Evelyn:       Ah well, we all get stressed at times.  Life is busy for everyone these days. So we’re back to the beginning again, aren’t we?  When you get to the stage of full-time work and living away from home I think it will be time to sit down and look again at just what being independent means.  Does it mean you look after yourself and your home and that you can keep up your social, sporting and voluntary activities as much as possible – or does it mean that full-time work should be the most important thing for you to focus on?



KYLIE:      My friends are important – I want to see my friends.  And I want to do my voluntary work – my public speaking and helping out at the Down Syndrome Association.  I like meeting new people.  But if I spend all my time at work and organizing my life on my own as much as possible, I won’t have time to do anything else!



Evelyn:       That’s right.  So maybe part-time work might again be the best option for you.  It would mean you would earn less money – but so long as you can support yourself to live on your own or to share with someone else you may be able to organise your life to fit in the everyday things that are important to you.  You were lucky enough to go to Dublin last year with the Australian Special Olympics team to play tennis, but having the time to fundraise and to train hard might not be possible again.  

But maybe the goal should be to have a full and satisfying everyday life that you can manage for yourself without the stress of a full-time job.  It might even be important to have time to be the slob you sometimes think you want to be that I generally try not to let you be!!



KYLIE:      Yes, well, I’m sure midday movies now and again can’t be completely bad for me!



Evelyn:       So you think that perhaps LIVING TO WORK rather than WORKING TO LIVE might not be such a bad idea?



KYLIE:      It’s a lot to think about, but talking about it all has certainly helped me to decide what is important to me now.



Evelyn:       It never ceases to amaze me, when Kylie and I have these discussions and try to look into the whys and wherefores of life, that we always end up with a fairly obvious and perhaps simplistic conclusion.  Is that because today, in our very busy lives, we all forget that life really is meant to be simple?  Why don’t we stop more often and give ourselves the time to think about taking the control we want over our lives so that we do not stress ourselves out all the time?  If we look at the world around us these days we can soon see that there are many people out there not taking the time to have fun and to be happy.



KYLIE:      I like being happy, I like feeling good about myself.  I don’t like being stressed or rushed.  



Evelyn:       So we’ve got to the point now where we can happily say that we should all LIVE TO WORK if we have a goal that we really want to achieve.  But we should not forget that we should WORK TO LIVE, too, because if we only LIVE TO WORK we might lose sight of our goals and our ability to manage our lives.



KYLIE:      Okay, so just because you’re not working to live or living to work …



Evelyn:       I’m living to live now that I’m retired!



KYLIE:      I want to LIVE TO WORK so I can get out there and manage my life – and then – and I’m sure you’ll remind me, Mum! - I’ll think about whether I should just WORK TO LIVE.  



Evelyn:       So, in conclusion, this is the question that we felt needed answering: Should people with Down syndrome, if they want to successfully lead independent lives, necessarily work full-time?  We know society expects people to LIVE TO WORK – that is, work full-time, live for the present and save for the future.  But we are talking about whether, to manage life as independently as possible, people like Kylie might one day consider WORKING TO LIVE – that is, working toward being able to choose how they should live their lives.  Saving for the future is not a realistic option for Kylie, so I have come to the view that it is important to plan now so that when that independent living time comes for Kylie she will be able to WORK TO LIVE so that she may lead a happy, satisfying and fulfilling life that is right for her.



KYLIE:      Okay, so now we’ve worked – let’s live.  

Thanks again for sponsoring us to come here and speak with you today.

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