| Brancaster Staithe, Norfolk, December 2014 |
Showing posts with label Canada. Show all posts
Showing posts with label Canada. Show all posts
Wednesday, 11 February 2015
Travelling abroad with a disability
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
Labels:
Canada,
Communication,
Germany,
Iceland,
Travel
Monday, 1 October 2012
Shoelace tying, it’s an art!
One of my favourite activities is showing clients,
young and old, how they can learn to tie their shoelaces.
I went to see a film tonight with my Danish neighbour.
It was a Swedish film, based on a true story called The Art of Tying one Shoelaces –
In the summer I had been given a gift token for the
cinema. I do not like to go to the cinema alone so when I saw my
downstairs-neighbour I told that I would like to invite her to come with me if
she ever noticed that there was a film showing that we may enjoy together.
Several months ago she had asked me whether I would go
the film Untouchables with her and
this time she soon came up with just the film for me. Even the title was right
up my street although she did not know that way back in 2009 I had posted
something here on my blog about the art of shoelace tying.
We made a gallant first attempt to watch the film on
Sunday afternoon but were turned away at the door due to a dysfunctional
neighbouring toilet that had turned the small cinema into something reminiscent
of a pigsty!
Reluctantly, at first, we left the building then took
ourselves off to the beer festival that that was taking place across the river
next door rather than waste the cinema tickets on a film that we really did not
want to see. While we sat with a pint of beer between the two of us and watched
the real-life film around us, we drew up plans to find time in the middle of a
busy week to make a second attempt at watching our chosen film.
My neighbour said that it would make a good
distraction from work but I was not so sure about that. The subject of the film
seemed a bit like bringing coals to Newcastle, but it turned out to be very entertaining
and offered much food for thought.
It also reassured me that I am certainly in the right
job and I learnt a lot from it too.
This week I have been attempting to find a way to take
a group of people from our association to the film. We would like to take the
people who live independently in their own flats on a trip out, perhaps even
fill the whole cinema as an advertising and publicity campaign between us and
the cinema chain.
PS
I have decided that it is worth giving the 2009
shoelace posting another airing, complete with the wonderful comments that
followed it –
Friday, 20 February 2009
Shoelaces, cipöfüzö, Schnürsenkel

Tying tongues
After the word bagoly,
cipőfüző is my all time favourite Hungarian word. Both words just
roll off the tongue, with difficulty, and appear to have no meaning or purpose
other than to make one smile.
Schnürsenkel sounds quite nice too, but Zwetschgenmännle remains my
favourite German word for the very same reason, that although it is difficult
to say it always brings a smile to my face.
Tying shoes
Most of the children in our group have Velcro fastenings on their shoes so we have to find other ways other than "real life" to learn to tie shoelaces.
We have a game where each person gets a cardboard shoe
and a dice with coloured spots is thrown to see which colour shoe gets to
thread the next hole. There is an accompanying story book which is all about a
little boy called Lucas who is also learning to tie his shoelaces at the same
time as us.
We do have
such a game, but...
Weaving tales
Teaching children to tie shoelaces is one of the
things that I love best and there is no need for a game and a story book. There
are so many funny stories to make up, about snakes weaving their way around
trees, or rabbits jumping in and out of holes, never escaping from sight
because of their long ears, tales of fairies passing magic spells on knots that
never come undone. We get lost in a faraway land of strange folk and animals that
all seem to have moved into this shoe that we are working on. It is lovely and
it could, if we let it, take over the whole day!
Notes
Cipöfüzö, Schnürsenkel - shoelaces, in Hungarian and German
Bagoly - a Hungarian owl
Zwetschgenmännle - a German dried plum man
Category – conductive upbringing
5 comments:
Andrew
said...
Thanks for taking
the trouble of indexing your blog. This will be a great help to your users but
it is also extremely interesting in pointing to the upbringing emphasis of what
you write, and the dangerously neglected upbringing dimension of Conductive Education.
I have just been reading the honest, informative and heartening reports from a mother who is currently at a CE camp with her daughter. Parent-blogging is going to add a whole new transparency to CE services/programs of every kind and, if this early example is going to be typical, then such reports will offer those with time and sense to follow such blogs a golden opportunity to begin to draw much more sensible conclusions about the process, goals etc of conductive pedagogy. Do hope that future researchers will have the time and the sense to try this.
But ooch, ouch, I also hope even more that readers will have the sense to try and discern what is really happening here, and look beneath the language used to describe this and the false conclusion to which this discourse almost inevitably leads. Here’s a small example that relates to working between two lines (my own emphases added):
‘…you must walk with left foot forward, right hand up and alternate. Interesting to see how difficult this is for children with cerebral palsy. It takes lots of correcting and concentration. Cassie spent a lot of time doing this type of therapy and she really excels in this program.
‘She has to concentrate and correct her foot placement each time. Such easy exercises that could be incorporated into any physical education program or physiotherapy program. Hope to keep these up when she returns to school. [She] thinks these are such fun.’
No one can object to exercising skills learned and exercising the body, but teaching such skills in the first place, that takes pedagogy, and this posting of yours, on shoe laces, clearly illustrates the difference.
More, however, it also shows the wider world of upbringing into which such pedagogy should be part, and I can see why you have indexed this posting into your-Upbringing-category.
No criticism here, by the way, of the lady writing this blog. We all of us come into Conductive Education weighed down with our previous understandings and this may frame our understandings of what we do, hear, see and experience, sometimes for a very long time. This was certainly true of me and I would guess of you too. Her posting was written only a week or so into the camp. She’ll-learn!-Most-of-us-do.
Thank you,
Andrew, for putting my thoughts about this Mum's recent posting so clearly into
words.
This is the blog I referred to in my last posting, this is the Mum who discovered my blog which triggered me to categorise my postings. It is also because her daughter Cassie and my group were tying laces on the same day that I wrote about cipőfüző at all.
This Mum is really enjoying her daughter's successes and supporting her so well on the bad days.
Whole families at camp are supporting each other and enjoying this too.
It is so important, as you say to ignore some of the language that hurts my ears just as my Norfolk accent hurt the French teacher's ears at school, and to look further.
This mum’s blog contains so much information which is invaluable to me. As I read her reports each day I learn more about the needs, and even demands, of families with children with disability.
I can then go on to use what I have learnt in my own work. I can begin to mould my "one man band" so I can offer these families something of what they are asking for.
As people will know if they already read my blog I am very interested in language.
I have had a very unusual life and I have had to learn both the importance of what words mean and the enormous importance of the sense which lies behind the meaning. I have been told that Luria, who lots of people in Conductive Education talk about and very few actually read, was very hot on this distinction, sense and meaning. The two are different but of course they are connected.
I love looking at people's blogs for the sense of what is going on there. I get to this I hope because I have my own strong sense of what is conductive and what is not. But I really do fear that people who have little or no such sense, or have the wrong sense, of this, will get hooked on the meaning of what they read and just end up with a very strange understanding of what they call “Conductive Education”.
This reminds me of my dear old teacher Mária Hári. We always used to say her explanations were wonderfully clear as long as you already knew what she was talking about!
Now I understand her much better.
Hi Andrew
Glad you are interested in reading a mother's perspective on CE. I am not sure I understand the point you are making about my perception of the individual program working between two lines. I have never heard the term "pedagogy" before so this may be why I don’t understand your point. Anyway, it is fascinating to see who is interested in what I write. My blog is a journal for my daughter, myself and our family and friends who are interested in my daughter’s progress here at ability camp. It is also a way to say thanks for the donations raised to support this very expensive camp. I take the pictures of Cassie if the conductors allow me to. I post them if the parents allow me to. There is only a short amount of time that the parents are allowed into the program. In the past Cassie has done extensive amounts of physiotherapy at Chedoke Children's Developmental Rehabilitation program in Hamilton Ontario. She used a Pony walker, regular walker, treadmill, gait training and other methods to learn to ambulate. I only have the Canadian physiotherapy perspective to compare CE with. There seems to be a lot of conflicting views.
The conductors
don’t support some of the types of therapy that we feel have been very useful
for Cassie's growth and development. After five weeks I plan to return to
Cassie's rehab program that is covered by Ontario Health Insurance Plan but
hope to take home some ideas that we can continue to work on. Cassie's well
being is important to her Dad and I. Cassie has had Botox (into thumb and
various leg muscles), Serial Casting recently before coming to camp. She has
used a left AFO and a SMO on her right since 6 months old. She pretty much
wears them from morning until night and often wears her AFO and a knee
immobilizer at night. I have learned to stretch her and I have learned to
mobilize her calcaneous. (To assist with her problem of walking on the outside
boarder of her foot.) It is an evolving process where things look great, she
grows and things look worse.
We have invested
huge amounts of time in various therapies for her hand. Focus on Function
study, Constraint induced Movement Therapy, therapeutic horse-back riding
programs, and she loves ballet and swimming.
I believe
children need to be well rounded and too much therapy is not really what I
promote. School, day care, church, theatre camp and girl guides have allowed
Cassie to participate and shine and develop well along with her peers. We do not
participate in any active therapy programs in the summer. Instead we enjoy fun
at our trailer where Cassie is free to play, swim and bike ride with her
friends and sister. We give her only small reminders to correct things, or to use
her weak hand, during the entire summer. Every child needs this free time and
we find it invaluable to her growth and development.
Interestingly, I
have many pictures of Cassie at her after school physio clinic and she is doing
the entire program with her AFO's on. This is very different from her program
here at Ability camp. The conductors are working hard to educate me on the
dangers of Botox and AFO's as well they do not seem to support orthopedic
surgery although they have not commented to me on the surgery Cassie needs. I am
still not sure of what is best and may take the best of what I can remember
from each type of therapy. I am conflicted as to what are the best options for
my girl and I build trust with different professionals and guide my decisions
based on what I think is best. I continue to put her AFO back on her left foot
after her class here. Cassie loves to run a lot and runs better with her left
foot supported. I have a terrific orthotist who invests a lot of time, and a
great deal of skill, watching Cassie ambulate. Constant adjustments are made to
her AFO's. I still may consider allowing a surgeon to correct her equinovarus
foot deformity if the stars align and Cassie works hard and continues to
improve her muscle tone problems. I would love to prevent the need for surgery
however. It is a continual balancing act. The planned surgery is club foot
surgery and the timing is crucial and her specialist sees her every six months
and we work together.
Here at Ability Camp the CE conductors are presenting me with other options that are empowering and important to me.
Yesterday Cassie
saw a chiropractor who may be able to assist with her leg length discrepancy
and twisted foot. The lack of written material here at camp makes it slower for
me to grasp and remember what is said. Yesterday Cassie walked down the hall in
orthopedic shoes that are too big (borrowed and put on her by conductors).
Although I don’t like the look of her foot I do not say anything as I respect
what they are doing and came here to learn their ideas. Cassie's left foot is
rolling over badly as I watched her run down the hall back to her CE class. I
am interested in reading a lot more information before I give up on some of the
medically managed ways of controlling Cassie’s spasticity and poor muscle tone.
I don’t believe the amount of therapy she gets at home would ever allow her to
be without AFO's without a huge commitment on my part. Until Cassie is old
enough to make her own decisions I must balance out what I feel is best for
her. I am a busy RN, mother and wife. I am just learning CE and yes I relate it
to exercise or physiotherapy because it is what I am familiar with.
Cassie invested
huge amounts of time into constraint induced movement therapy which I also support
but unfortunately she loses what she has gained after she goes back to doing
what is easiest for her using her strong right side. I have no doubts Cassie
will make gains with an intensive program like CE because she makes huge gains
in every program she participates in.
I am glad I linked
to Susie as there seems to be a lot of good information on this web site. The
internet is how I found Ability camp. Keep organizing the web site Susie, if I
can find the info I am looking for easily I am more likely to read more. The
camp here has no written material which I find strange. Like a lot of mothers
of children with CP I am always overloaded, I lead a hectic life. I have slowed
considerably these two weeks because I am away from home. My first two weeks at
this camp I have loved what I have seen and more importantly my daughter is
having a fun, enjoyable time and she seems eager to do the program. This is
what truly matters to me.
I excitingly await more responses from others and love sharing information.
Take Care
HAVE YOU NOTICED
OR LEARNED AT THE CAMP WHAT YOU CAN APPLY WHEN YOU GOING TO BE BACK HOME. CAN
YOU DESCRIBE IT.?
CANADIAN PARENT AS YOU
CANADIAN PARENT AS YOU
Susie Mallett said...
Jerzy, this is
exactly what I have hoped to convey in some of my previous blogs.
The children work so incredibly hard at camps, conductors too, but what for?
The children work so incredibly hard at camps, conductors too, but what for?
What happens
next?
What about the parents, what are they learning? Who is teaching them, do they attend lectures, seminars or workshops at camp about conductive upbringing or Conductive Pedagogy? How do they acquire the information they need to continue the conductive family life once they get home?
What happens when the family gets home? Are there any home visits by conductors? Is there any follow-up work?
Do the parents know all that their children have learnt at camp, do they know what they can now achieve independently and how?
I do hope so.
Otherwise
children may become despondent and parents may begin to feel that they are not
good enough.
But they are good enough, but often have not been shown how to be. How can they know if they don’t get taught at camp? At camp the conductors have the ideal place to continue outside the group to show the families how to live conductively. Families are there 24 hours a day. It would just need a second shift of conductors and Bob’s your uncle “conductive upbringing”!
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