Welcome to Another Angle Consulting & Training website's "Story Page" An opportunity to share a snapshot of your journey with disability, or if you have known me - share a memory, or a funny story. To get you started here's an anecdotal story straight from the pre draft stage of my book. Let me know if you like it and tell me what else would you like to read about when I eventually have my book past "pre draft"?

HINTS, TRICKS – INDEPENDENT LIVING TIPS

Whether you will ever live with full independence or not is irrelevant. The type or severity of your disability or condition is irrelevant. From the beginning we should all be working towards learning new skills, maintaining ability, achieving goals in our own way and challenging ourselves to have the best life, a life worthwhile.

One of the pivotal moments of my childhood was the realisation that all of the effort I had been putting into “trying harder in order to get better”, had been completely misinterpreted by me, for a very long time. The realisation left me shattered.

For the whole of my young life I heard the same message, from Mum and Dad, my Grandparents, extended family, friends of our family, teachers, therapists and doctors. “Come on Kerry, you can try harder than that, if you don’t try hard – you won’t get better.”  There were days where I wanted to scream but generally ended up in tears instead. “Didn’t they know I was trying? Didn’t they know I was trying as hard as I could even on the days when I had no energy? Didn’t they know that I was too damn scared not to try?”

The hardest lesson of all, the one that left me shattered, was the realisation that they didn’t mean, “if I tried harder I’d get really better, you know, like when you are sick and you go to the doctor and take your medicine and then you are not sick anymore.” You get better! Everyone had been talking about a different “get better”! They meant that I needed to continuously try harder in order to be the best that I could be. What a terrible disappointment.

Of course when all is said and done everyone knew how hard I tried and continue to try every day of my life in order to learn new skills and maintain my precious abilities.

……………………………………

So the first piece of advice that I would give anyone who has a disability is to always strive to be the best that you can be. Watch other people, be challenged by them but don’t try to be exactly like them. Do not try to do things the same way that you see other people doing them! The likelihood is that it won’t work. People without disabilities make simple tasks look simple. Many people with disabilities find the simplest tasks, the most difficult to complete. Confusing? Absolutely but that’s the way it is. 

Luckily for me I had opportunities to experiment with how I would get things done and even now after living independently for over 27 years I still am caught out occasionally and have to sit back and consider “How am I going to do this?”

Everyday people use simple skills like writing for example. When you can’t write with pen and paper for whatever reason, it changes the way you function. For example there are always too many things in my head, because that’s where I keep most information, including diary notes, my “to do” list, my shopping list, work information, personal information. Sometimes I will forget the most basic things, not because I’m going mad, just because there’s so much in my head. At least I have the luxury of being able to type and speak, so if I need to I can ask someone to write something for me or if I am sitting at my computer I can write things for myself.

Here’s an exercise for you; I challenge you to spend a whole day without writing down a single word. Take note of how it makes you feel and how it changes your day.

Most people don’t stop to consider how they will have their personal care and hygiene needs met or how they will get dressed. They just do it. Simple tasks that can be impossible with a disability. Growing up, on week ends and in holidays it didn’t matter how long it took me to get dressed or even what I wore, my parents allowed me time and space to do it myself to the best of my ability, making choices between the dress that I’d like to wear and the one that I could put on myself. You need to allow yourself or be allowed to experiment, right down to the type of socks that you wear. Some are easier to manage than others so you have to try lots of different styles and materials until you work out what works for you.

While all of this is happening you build other skills. You have to think, figure things out, weigh up your options. You have to learn self control and manage your frustration and anger.

You learn time management. Every day tasks take me a longer time to organise and complete. I have had to learn and accept that this is just part of my life and learn to plan well. If you rush me, we’ll go nowhere fast and be highly frustrated and anxious. With time, space, patience and assistance with the finishing touches, the pieces of the puzzle that I just can’t do on my own then life will be much more worthwhile than if I’m restricted and prevented from trying to do things my own way.

If you are learning independent living skills from people who do things easily, stop watching how they are doing them and focus on the end result. Figure out what you want to achieve and build your own strategy.

If you can put washing in a washing machine but can’t hang it on the line, use a clothes dryer. Too bad if its not environmentally friendly, too bad if it uses a little bit extra electricity, too bad about what other people think. If that is the difference between you doing your laundry independently or not then so be it! Do whatever it takes.

If you need an hour in the bathroom in order to be independent, get up early enough like I do. Plan to use the bathroom at a time when it will have the least impact on the rest of the household. We need to consider other people and other people need to appreciate what we are trying to achieve by supporting our efforts.

Show the people that you live with that you are serious about building independent living skills by helping out around your home, tidying up, not waiting to be told or asked. Show them everyday even when you’re tired or feel lazy – never be lazy! Do your share, you should never have to do more than your share, don’t let anyone take advantage of your efforts.

Tasks as simple and mundane as washing dishes can be a real challenge if the environment is not right. Some people fill their sink so full with water and soap suds that no matter how hard I try, the minute my hands hit the sink there’ll be water all over the place, other people stick every single dish in the sink at once, there’s no way I’d even get my hands in there to wash anything. Don’t feel that you have to do dishes someone else’s way when the outcome is all that matters – the outcome is “clean dishes”.

Most people learn basic cooking and household skills by watching their parents and grandparents and I was no different. I have always enjoyed cooking when I have the space and the time. Whist I cook some of the same dishes that my Mum cooks, family favourites, I make them in my own way and take twice as long as Mum does. While I lived at home it would have been real easy for Mum to disallow me to participate in the kitchen, instead I was always encouraged to be involved even when it meant more work for Mum as there was more mess and everything took longer to do. By the time I was about 14 years old I would often cook a week-end meal. Mum would go and work in the garden or do some sewing, as it was easier and a lot less frustrating for her and for me if she wasn’t watching or listening to my kitchen calamities. I’m glad she trusted me.

So what sorts of things do I do differently in the kitchen?

For a start I use bigger bowls and pots than Mum for the same amount of ingredients. Small bowls and pots are harder to hold and slip out of my grip more easily.

In a bigger bowl I am less likely to spill or waste ingredients or mixtures as they have more room inside for stirring and mixing. I use big arm and hand movements and have figured out that if I want most of the ingredients to stay inside the bowl, then it has to be a big one!

The same theory works over the stove. By half filling a big pot with water or food, I am less likely to scald myself with flying food or water as I stir the pot.

I use potato mashers to mash everything from potatoes to minced beef dishes, chicken dishes, soups, and goulash, anything that requires food to be broken up and separated during cooking. Potato mashers are great. They are strong, sturdy, have long handles and you don’t need to have refined wrist or hand movement to use them, It’s much easier than trying to break food up with a fork or spoon.

I’ve learnt to gauge rather than measure ingredients. Why? Well by the time I measure 1 cup of sugar successfully, I’m left with two cups of sugar to clean up.

I never crack an egg straight into a mixing bowl with other ingredients. I break an egg into a breakfast bowl, that way it’s easy to slide any pieces of broken shell up the side of the bowl and let them slide onto the sink before I tip the egg into the mixing bowl.

Using one hand I can peel a boiled egg – go on try that one! I can scramble eggs and turn fried egg or omelette into scrambled eggs!

Boiled eggs in an egg cup with bread soldiers? Now there lies a problem! I never did find a way to knock that eggs head off and have something edible left! That’s where Nana comes in. When my children stayed at Mum’s soft boiled eggs with soldier toast was always a breakfast menu option. That demonstrates there is always a way to build a strategy to get things done even when you can’t do every simple thing yourself.

You’ll always find half a dozen sets of steel and spring tongs in my utility drawer. They are light, strong and can be easily used one handed for lifting, serving, stirring. They make excellent salad and cake servers.

Cakes, I don’t do cup cakes, fairy cakes, fancy cakes, and fiddly cakes. I’m renowned for big fat yummy chocolate cakes though. I chuck, yes I mean chuck! All of the ingredients into my oversize bowl and beat vigorously with an electric hand beater. Here’s the challenge... I need both hands to control the beater in the bowl and at just the right moment have to take one hand off to use the switch to turn the beater off. Whilst I now have this movement down to a fine art, there have been some disastrous practice sessions over the years.

The funniest (Depending on the viewpoint from which you were looking), was on a Saturday afternoon, I was in my early teens. Tracey and I were visiting our friend Clint. We convinced Clint’s mum, Lorraine to allow us to make a Pavlova. Lorraine separated the eggs for us and left us to it. Clint thought it was marvellous having two girls from school cooking in his kitchen.

Not far into the exercise we all had the giggles, Clint being the worst offender.

Between the three of us we had about two, half decent hands. Not bad odds except the two half decent hands belonged to different bodies!

All was progressing as planned; Tracey and I position carefully to manage the bowl and beaters while Clint looked on. Oh shit the mixture was suddenly ready and we hadn’t thought about which one of us was going to be able to release our position to turn off the beater. In true adolescent style instead of pulling ourselves together and being serious we were buckling with laughter trying to keep the beaters inside the bowl. You guessed it. In the throws of tears streaming down our faces and trying to turn of the machine the beaters left the bowl and sprayed pavlova mix from one end of Lorraine’s kitchen to the other, having splattered all over the three of us before we managed to turn it off. Clint had laughed so hard that he was out of his wheelchair and rolling about on the floor with Tracey and I. suffice to say we never made Pavlova again.

After years of experimenting with kitchen tools I try to keep things simple. The more gadgets you have the more fiddling about you have to do. I have learnt that kitchen linen makes a difference too. I only use pot mitts that are thick and long, the ones that you slide your hands into the ends of. My right hand doesn’t always open (especially when I want it to), so using any type of gloves or mittens are not a good option. Long pot mitts also enable me to hold hot dishes closer to my body without burning myself. Pulling items close into my body is the only way I can carry things safely. Well, safely until something goes wrong and I hurt myself!

Speaking of hurting myself and as I’m sure you have already gathered, I have always had opportunities to take risks, and more importantly I have been allowed to fail. As rediculous as that may sound, I believe that two of the most important factors that people have a right to experience as part of living a life worthwhile, and developing independent living skills is the chance to fail and opportunities to take risks.

Other people are not only allowed to take risks and have failures, they are expected to. People learn and grow, mature and make choices about their futures from times in their life when things have not gone to plan, a decision has been a stupid one, they’ve been extremely disappointed or hurt, haven’t got what they wanted. Most people I know have made their best choices and even changed the course of their life after experiencing a failure or taken a risk that ended poorly.

If you don’t have the opportunity to make mistakes, to get things wrong, to have failures, and have to recover, heal or fix things, to move on and make new plans, how can you grow and develop into adulthood and have any sense of independence and adult worth?

In times gone by so many people with disabilities have been so safeguarded, so protected, so stifled that their Human Rights to make choices that include failure have been denied. It saddens my heart to see that some people with disabilities both young and old are prevented from failure and risk taking.

I have made more mistakes, bad choices and failed attempts in my lifetime than I wish to remember. I use those experiences to be wiser, safer, stronger and resilient.

TOP TIP - Don't try to do things like others do, don't try to be who others are!

Share your story.

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PLAYGROUP

I first met Kerry as a young Mum attending the Church of Christ Childrens Playgroup in Rivervale. My son Aaron was a toddler, I had a 6 month old daughter Romy, and Kerry had her first child Stacey.
Kerry was absolutely amazing, with a terrific sense of humour, for example, I am not a great cook - can cook, I can do it well when I try, I do prefer to eat!
Kerry is a very good cook. Kerry had made muffins for the mothers at playgroup morning tea and they were delicious.
After a few weeks, and another batch of muffins, another new Mum arrived.
She commented on the 'delicious scones' and 'who made them?'....
Being a smart ar&*^$ I said (having formed a new friendship with Kerry) that 'It was Kerry, she's the only chick I know that can chuck ingredients in a bowl and just stand there to mix them!'.... very poor humour but Kerry laughed loudest replying 'You're just jealous cos' I make a better tossed salad than you do!!'....Well that brought the house down!..
Another time I was visiting Kerry at her home - she was hanging out the washing.
It was a very windy day and her rotary line was kinda spinning and Kerry was trying to grab hold of it, which was proving difficult. I must admit I was in two minds, do I help? and step on her independant toes or do I just watch?....
To which Kerry stated 'So I gather you'd let your able bodied friends struggle too huh"
Well, after much laughing we got the washing on the line no probs!!
Kerry taught me that people may talk or walk different, or maybe not talk or walk at all, and that we should look at a persons ABILITIES not DISABILITIES. That campagin, 'See the person, not the problem' was priceless.
I feel tremendously priviledged to have met Kerry and continue to have her as a friend in my life - You're amazing girl!

Gabriel Worthington - March 2009