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SUSIE MALLETT

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Showing posts with label Communication. Show all posts
Showing posts with label Communication. Show all posts

Saturday, 7 March 2015

Books, blogs and phones



Communication between friends


My phone was broken this week but I did not miss it, even though I was glad to get it back today in normal working order again.

One friend called to ask whether I was OK. She had noticed my absence because she missed her daily doses of my photographs of our work – she works in the offices of our Association and enjoys seeing what we get up to and seeing  what she works so hard for!

No one else seemed to notice my absence from the smart-phone world because I still had Skype and email connections from my home-computer.

I thought that I had not missed the phone until looked back through my emails to check for those I had not read. There were a few, all from the blogs that I follow with the latest blog posting sent to me in my email inbox. Most of these blogs are American so the emails telling me about new postings usually arrive during the night. I read them on my mobile phone in bed, between alarm calls. There are three. I doze between the first two and read the blog postings before the third.

This is one posting that I missed from a blog that I have only recently began to follow –

http://jacklivingwithparkinsons.com/2015/03/05/the-only-place-you-are-a-burden-is-in-your-own-heart/

It is good once again to read and learn about life with a motor disorder from a very personal point of view.  

Here is another posting that I missed this week, from an old favourite –


And of course I missed the daily offerings, packed with so much valuable information, from Dean’s Stroke Musings. I had to find time to read these in the evenings on my home computer rather than in the early hours on my phone


I discovered two advantages of having no mobile phone. The first was that I read books undisturbed by phone calls and messages on the bus and tram, and the second, also to do with reading, I read books instead of emails in bed in the mornings – something I have not done for years.

Language

I have two books on the go: a heavy one that I take to work as it is too heavy for bedtime reading, and a smaller one, Lingo, a Language Spotter’s Guide to Europe, by Gaston Dorren. This is an amazing book.

Many of you must have seen people, usually men but I have also seen a woman or two over the years, standing at the end of railway platforms writing down the numbers of all the engines that they spot. Well this book is written by someone who spots languages in the same way as train-spotters spot engines!

I love the footnotes at the end of each language-chapter, especially the second note which is always a word from the specific language that the author has picked out that does not exist in English but one that he believes should perhaps be adopted.

I enjoy books on language and culture so much because my day revolves around so many languages. I love to read about how these languages evolve and Lingo makes a very entertaining journey from one country to the next, describing how the languages travelled to become what they are today.

My life is full of different languages and cultures I have often written about how many mother-tongues we have in our groups.

One Friday I spoke a bit of Hungarian, I worked with three different Hungarian conductors and I met another four. I worked with two children whose mother-tongue is Turkish, with one whose mother-tongue is Dutch, and another whose mother-tongue is Russian. I worked with only two German children, one of whom gets top marks in English and Latin and between the conductors we are fluent in Hungarian, English, German, and Swedish, with a bit of Greek, Italian, French and Russian!

More about the brain

The heavy book that I carry to work is The Brain’s Way of Healing, Stories of Remarkable Recoveries and Discoveries by Norman Doidge, who also wrote The Brain that Changes Itself.

In my opinion this his newest book, The Brain’s Way of Healing, is not quite up to the story-telling standards of Oliver Sacks but it is well on its way to being in the running. Oliver Sacks is quoted on the back cover as saying that this book is – ‘A remarkable and hopeful portrait of the endless adaptability of the human brain.’

With Oliver Sacks’s next book being published in the spring, and its possibilty of being his last, it is good to read a few new books that follow in his footsteps. Another one of my recent reads in the same vein is – Reaching down the Rabbit Hole by Allan Ropper and B. D. Burrell.

Food for thought for a journey

I hope I have given some readers some food for thought over the weekend or on the journey to work next week.

Notes

Gaston Dorren (2014), Lingo, a language spotter’s guide to Europe, Profile Books. IBNS 978-178 1254 165

Norman Doidge (2015) The Brain’s Way of Healing, Stories of Remarkable Recoveries and Discoveries, Allen Lane- Penguin Random House, ISBN 987-1-846-14424-0

Allan Ropper and B. D. Burrell (2014), Reaching down the Rabbit Hole - Atlantic Books, ISBN 978 1 782 39547 8

Saturday, 28 February 2015

Little Princess loves stories...





… and adventure!

Yesterday I had an hour or two alone with Little Princess. I told her all about helping one of my clients organise a trip abroad.

First I had to explain who the client is.

I told her that my client is twenty-five years-old, and explained how she has finished her first degree and her post-graduate studies and is just about to leave university with a master’s degree in psychology.

I went on to explain how many university students like to study, work or travel abroad after graduating and that my client is no different in having the same wish.

Despite attending grammar school and university independently without the assistance that our children now have, with her mother and older siblings helping her on the rare occasions that she needed help, my client was not so sure she could travel abroad independently.

‘Why?’ asked Little Princess.

I always think that Little Princess is preparing for her future whenever she asks me searching questions, so I try to give her full and interesting answers.

I explained that however many things that my client has accomplished alone during her life there is always that initial worry about what is coming next, concern about how will she manage. We all fear it but when there is a disability too to cope with there is even more things to worry about.

I explained that so far during my client’s life there has always been someone nearby to help her out if need be. At school for the first few years her sister was still in attendance too, and she was only a thirty minute bus ride from home. The first university she attended was just a two-hour car-drive from home near enough so Mum could nip over if called. Her brother lived in the city where she did her Master’s degree and she lived with him at the beginning before she found a room for herself.

The story continued by my relating how over the years my client has become more and more independent. But, and it is a big but, travelling abroad is a huge step for anyone and for my client especially. Not knowing a country makes everything that comes in ones path more difficult. Not having someone you know within a few hundred miles of you is another stepping stone to get over. And that, I told Little Princess is where I stepped in and with use of my connections in the conductive world my client has now organised what sounds like an amazing trip abroad.

I told Little Princess how my twenty-five year-old client has always been a bit of a ‘guinea pig’ in her world living with disability and my conductive world. I explained how I have learnt so much from her achievements since I first met her when she was 4 ½ years-old, just as I learnt from Little Princess.

I told Little Princess that I hoped that my client would be testing the waters for us once again and that this trip abroad is the exciting adventure that we hope it will be it could be the beginning of great developments in all our conductive worlds.  These are developments that could mean that in the not too distant future Little Princess and her friends can also take part, when they are old enough.

I think that this story was motivation enough for Little Princess to learn a foreign language as fast as she can and to become as independent as possible as soon as possible, as Little Princess’s only  words at the end of the story, after asking how much something like this would cost, were ‘I will tell Mama!’

Little Princess is by the way eleven-years-old, going on twenty-five! She also has a severe problem with physically speaking, but has no problem at all in communicating!

She was the sunshine on a rainy Friday afternoon. Thank you.





Wednesday, 11 February 2015

Travelling abroad with a disability

Brancaster Staithe, Norfolk, December 2014



Travelling abroad with a disability

I was recently in touch with my friend and colleague Lisa in New Zealand. I was asking her about her experiences and ideas, and any opportunities she knew, for assisting our young clients to travel abroad.

One of my conductive interests at the moment is assisting a young Master’s graduate to organise a trip abroad. She wants to experience what many of her friends have experienced in their gap-years, but needs assistance to do so. She does not need a lot of physical assistance, she has been living alone for many of her university years, but she has never travelled alone andshe needs someone there, just in case. This someone should not be one of her family; the whole point of making this journey is to do it alone. Even if there is someone looking on from the wings this should not be Mum or big sister.

I have asked another two colleagues, in England and the USA, and it looks like we will very soon have worked out a few opportunities for travel for this Master’s graduate over the next few years!

When I looked at my messages from Lisa a while after we communicated I discovered this

 
Julia Hartshorne is beginning a ‘pilot scheme where a disabled youngster will be able to live abroad in the kind of programme available to non-disabled students’.
 
‘As a high school student Ms Hartshorne, who has mild cerebral palsy, spent a year in the US under the international AFS programme. She was turned down twice because of her disability, but her determination saw her become the first disabled Kiwi student to live overseas with that scheme’.

When I read this I thought “Now, this rings a bell”, and immediately sent this link to my friend and client, Frida Adriana Martins who I had helped fifteen years ago to fulfil her own dream of spending a year in high school in Canada. She was turned down many times and eventually we managed to find a way to organise it all privately.

Yesterday I was lucky to meet Frida for tea at the railway station. She is on a flying visit and I had two hours spare between my day’s four appointments. We discussed this newspaper article that I had received from Lisa, and Frida told me how much her time in Canada still meant to her and how it had paved the way for her further adventures. She then asked me whether I would like her to write it down. Of course I wanted her to write it down – and she did so, almost immediately.

It always astonishes me how so many sort of connected things happen in the space of such a short time in different parts of the country and the world. I am ever grateful to Cyberspace for giving me the chance to link up with so many people and make more connections that will help people make their own plans for their future like the young Master’s graduate is now able to. I am also grateful to Frida Adriana Martins for sharing her own very personal story, and here it is –

How much sway-room do you have?
Frida Adriana Martins

Fifteen, almost sixteen years have passed since I entered Canada as a (disabled) exchange student. I liked the country and its people so much back then; I wanted to move there permanently. Life and immigration rules had different plans though. Today Canada is kind of far away from me both physically and mentally – but some aspects of it will stick with me all my life and they are indeed worth a whole article.

My road to the Rocky Mountains was, indeed, kind of rocky. I have cerebral palsy and -what was not known back then – high-functioning autism. In my (mild) case this means that I walk as if I were drunk and process visual, acoustic and social stimuli differently. The problem is that you need to see me in person to get a realistic picture of the condition in everyday life. Both autism and cerebral palsy have a broad spectrum of faces. I can't be compared to Rain Man or the guy in My Left Foot. (I wonder who can)                                          

Since student exchange offices all across Germany did not exactly see me in person, they thought I might be a living liability problem and therefore decided that I could not join their programmes.

The situation was eventually solved by means of a family who contacted me and volunteered to host me on a private basis. They had their own children with cerebral palsy and had some idea how my daily life worked.

Recently, I have come across similar issues to those that I had with the student exchange offices while job hunting – companies who don't know me don't hire me, because of the disability. Thus, I focus on addressing people who know me and my strengths and weaknesses, people who have a realistic image of how I can make myself useful at work.

Some student exchange providers generously offered a placement in the USA because they had some limited experience of bringing blind people there... ‘But well, people, are you deaf? When I say Canada, I mean Canada. If I say grapefruit at the store, I don't mean grapes either.’

This experience has, in the long term, taught me to not let people talk me into something else just because it is more comfy. For instance, my university offers me extension after extension for assignments, but in fact I need a different work structure from other people’s in order to succeed, not extensions. So I fight for it. In my film classes, it has meanwhile become acceptable for me to submit a cartoon rather than a lengthy essay, as long as it conveys the same contents as the written text would. I am still trying to get permission for a solution in my major, Gender Studies.

My travels have taught me to articulate my needs clearly, but also to negotiate them if there is absolutely no other solution.
 
As Canadian singer Avril Lavigne would put it: ‘Why do you keep on making things so complicated?’ I have always experienced Germans as complicating everything, and rapidly learned to appreciate the straightforward, clear statements of most Canadians I met. Of course there are always such people, but Canada showed me I can do so much more if I get clear instructions. Whenever a German now asks me ‘Can I ask you a question’, I give the reply that I often got in Canada: ‘Ask your question and move on.’

Cities like Calgary, where I lived in Canada, also seem very geometrical and well-organized to me. This fact made me more conscious about what kind of organization I need in my immediate surroundings because of my autism.

Western Canada and especially Winnipeg was built up by Icelandic immigrants. Even though I did not meet them, or their historical documents, during the student exchange year, two subsequent visits to Canada brought me in touch with the Western Icelanders (Canadians of Icelandic descent), so I started wanting to learn their language and to see their old country.

In 2004, I promised them that I would return to Canada soon after a trip to Iceland and tell them all about it. I never did. Iceland turned out to fascinate me way more than Canada and has become my second home ever since. I am currently staying in Reykjavik as a foreign student of the University of Iceland. I experience the people in this small country as extremely straightforward – and chaotic. That seems like a contradiction to my previously cited need for organization, but it is not. Icelanders often do not plan anything that leaves room to improvise according to the needs of the here and now.  I never planned for the strange snow piles that a snow plough gone mad leaves in the middle of the road in Reykjavik– but my conductor Susie had the best idea to cope with them: trekking sticks. I also use them during the summer now, which makes me less tired.
 
I guess that I am walking through my life now with a healthy cocktail of German accuracy, Canadian clarity and Icelandic improvisation. Interestingly, the Icelandic language is related to both very old German and very old English. The word "svigrúm" is pronounced similarly to "sway room" and it means scope.

In communicating with me, you have to treat me like everyone else but with some minor special adjustments, give a little leeway.

Dear new friends and potential employers, how much sway-room do you have?

February 2015