SUSIE MALLETT

My visitors today

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




Sunday, 8 February 2015

Reading



 
Full moon, February 2015
And observing

I remember that during the time that I spent in Hungary, 1989-1993, one of my regular activities on my trips to England (usually just once a year) was to make a special trip to Norwich city-centre to spend an hour, or maybe two, in a bookshop.

I would make a beeline to one particular section of the three-storey shop where I would select a pile of books about two feet high. I would pile them up on a table and then sit in the armchair provided to peruse them in a bit more detail before eventually dividing them into three piles. One a pile of certainties, another pile of next-time-I-am-home purchases, and the last one a discarded pile.

Over the years I have become quite proficient and fast at choosing what I want to read and what I need for my work. I have developed my book-buying technique so that it now also includes diligently reading all the book reviews in my weekly English newspaper and making notes to buy those I pick out at a later date or even order them online.

There was no internet book-buying in the late 1980s. I had no access to a computer in Hungary, in fact I had not seen one until I visited Germany for the first time in the winter of 1992/93. There was no world-wide-web, no googling to discover just the book that I needed for my dissertation, but despite that my library steadily grew.

In those early days books came into my hands through the bookshop purchases described above, via visitors who, if asked in advance, would bring requested titles, via my sister if we dared to risk the Hungarian postal service, and of course through my favourite place in Budapest – Litea, a book and tea-shop combined which invariably had an extensive selection of English titles, many of which were translations from Hungarian classics which I  read and widened my knowledge of the Hungarian culture.

For over twenty-five years I have not had ready access to an English bookshop apart from on trips home. I cannot go for a wander at the weekend and pick up a few books as I would if I lived in England.

Of course there are the usual English language novels at the local railway station, and at the airport there are the latest fashionable reads, but I rarely buy novels, I sometimes receive them as presents which I greatly appreciate.

So I still bulk buy when I am at home!

I think it shocked my sister yet again when I used her Christmas gift voucher, and more, to buy my latest pile of books. One of them weighed one and a half kilos and it brought my luggage right up to its allowed limit!

Amongst the books I bought this time was Reaching Down the Rabbit Hole by Allan Ropper and B. D. Burrell. This book has recently been a BBC Radio 4 Book of the Week, but somehow I missed it, so I am even more glad that it jumped out at me on the shelf as I was perusing.

This is another book in the style used in many of my favourite books, i.e. using the technique of story-telling to explain medical matters through experiences with patients and colleagues.

Operative observation is what AP and Co. would have called it.

The chance to make detailed observations of my clients is so important to me in my work and so necessary to decision making and planning. This is why I believe that the bits-in-between are often the most important parts of my practice especially in the “getting to know you” stages.

Whether these in-between-times are play-times, trips to the garden, chats with husbands, wives and carers, the moments when mums or dads arrive to collect children, lunchtimes, or taking off, and putting on, jackets and boots times, all the observations and conversations that take place play an important role in the decisions made while planning conductive sessions, just as the observations that the neurologists in the books I read make while they are chatting with their patients have a huge influence on the diagnosis that they make.

PS

Recently I have also read Two Roads by Wendy Cope, who I can thank for inspiring me to start to write again and The Lady with the Little Dog and Other Stories by Anton Chekhov who I suppose I can say the same for, as despite there being some depressing stories in this book his descriptive narratives are something worth aspiring to.

Notes

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

Two Roads by Wendy Cope - Hodder & Stoughton Ltd, ISBN 978 1444 7953 6 3

The Lady and the Dog and other Stories 1896-1904 by Anton Chekhov

Thursday, 29 January 2015

Something nice to listen to after several late evenings at work






Early mornings and late evenings have become the norm this week, but the late evenings have been livened up by the repeats of the daily episodes of Radio 4’s 15 Minute Drama – Tinsel Girl and the Tropical Trip by Lou Ramsden, inspired by the adventures and experiences of Cherylee Houston.

The drama could just as well have been inspired by adventures and travels that I shared with a friend of mine, a wheelchair user like the Tinsel Girl. I expect other people with disability will have their own tails to tell that could also inspire writers of dramas.

Notes