viernes, 30 de septiembre de 2016


1) Pequeño Deseo: Giving Hope One Wish at a Time

Child cancer patients, and other terminally and chronically ill minors, here in Europe are usually hospitalized for years, maybe for the largest part of a short life, but, fortunately, most hospitals in Western Europe are equipped with comfortable conditions for children; such as assorted toys, storybook libraries, and entertainers such as clowns and storytellers that visit the children to raise their spirits. These are usually very passionate and devoted entertainers, and that for a good reason: they have to engage children whose lives are cut very short, and who maybe have even lost all hope and all joy to live on. 

There are terminally and chronically ill children, cancer patients as well as others, who burn with a passion to fulfil a certain dream of theirs that they fear they will never reach before their short lives come to an end: such as visiting Disneyland in Paris, getting to meet certain celebrities, seeing certain theatre or circus shows, or sports matches live, getting to be a princess or a pirate for a day, taking part in a medieval tourney... 
Thankfully, there are also non-profit organizations that put all their time and money into fulfilling these seemingly unattainable wishes, no matter the cost of making them come true. In my country, Spain, there is one such organization called Pequeño Deseo, which means Little Wish. It makes no distinction of ideology or religion. Pequeño Deseo also organizes campaigns to raise funds for fulfilling the ailing children's wishes (and having a sports or media star visit the hospital, or organizing a trip to Disneyland Paris, does not merely cost 100 euros), for instance, by selling stuffed animals, bubble pens, spinning tops, and other little toys; as well as organizing flea markets in which second-hand gifts for children (such as toys, storybooks, clothes...) are sold at reasonable prizes. These fundraising events are very popular and have hitherto made the Spanish population, me included, help Pequeño Deseo grant the hearts' desires of over 3000 chronically ill children so far. I encourage those of you who know this organization, or its counterparts in your countries, as well as non-profit organizations of hospital entertainers such as Payasos sin Fronteras (Clowns without Frontiers) and PayaSOSpital, to do your bit for such a good and noble cause. For children, even those whose lives may end tomorrow, are the hope of our future.

2) Otome Games and Puppets: The Old Pastimes and the New
Holding a smartphone in my left hand, I look for Tsum Tsums --kawaii heads of Disney characters-- that are aligned; and then I join the Tsum Tsums, as if I were playing "join the dots," with my right index finger. The more Tsums I align at one fell swoop, the more tokens and experience I will get. 
As a child, I usually read storybooks, staged stories with my dolls, drew doodles of anime characters. Nowadays, one third of a weekend day, and one fifth of a normal academic day, are spent by me glued to a smartphone. 
So-called visual novels or otome games (a Japanese videogame genre that came here to Europe with the smartphone), in which you are the heroine of a story and romantically involved with a good-looking young man of your choice, occupy the foremost share of my smartphone gaming. Tsum Tsum and Farm Heroes Super share the second place. 
However, not all of my spare time is spent glued to the little screen: my star sign colouring book is nearly half-finished (Aquarius, Aries, Scorpio, Gemini, and Pisces illustrations fully coloured, Leo and Libra coming up next), and I also enjoy picnicking, writing fanfiction and poetry, singing, dancing, walking along the seashore, maybe playing hopscotch... 
Standing in the literature section of a local bookshop, I thread the cat princess puppet into my left hand, the dominant one, and the frog prince puppet into the right, then have them facing one another. In my mind's eye, I have already made the story up. 
Raising the cat princess on my left hand higher than her frog beau, I recite in falsetto as I make her wave to the frog below: "Oh Croakmeo, Croakmeo! Wherefore art thou Croakmeo?" 
With my normal voice, I now wiggle the frog in the blue doublet and reply: "What light through yonder window breaks? It is the east, and Mewliet is the sun!!" 
(Since I live in Spain, I actually said the quotes in Spanish). 
There is no garden, no balcony, no curtains flanking the stage, but still passing-by children observe the magic I am creating, entranced, nailed to the spell I have woven. 
This actually happened yesterday, this Saturday, the 17th of September 2016, on the opening day of the toyshop Abracadabra. Technologies may have changed, but the pastimes I enjoyed as a child are still fully compatible with my new guilty pleasure of otome games.

3) Such Stuff as the Future is Made Of
I first heard of this material when I visited Universeum in Gothenburg two or three summers ago. And I was amazed by the endless possibilities it has to offer. 
For starters, to break the ice and introduce the star of this project, graphene is an allotrope of carbon (hitherto, like many other people, I had only known graphite, diamonds, and Bucky balls until that visit to Universeum changed everything), which is only one atom layer thick, consisting of a sheet of carbon atoms arranged into hexagons like a honeycomb. Due to its extraordinary properties (it conducts heat and electricity far better than copper, and is about one hundred times stronger than the strongest steel, in spite of being one of the thinnest sheets of material there are, and thus, practically invisible), graphene has been dubbed the material of the future, and research and development departments across the world are unraveling plans of putting said properties to a good use. 
And, of course, the field of healthcare is not an exception to jumping on the graphene bandwagon. 
Mike McAlpine of Princeton University has devised a molecular sensor made of graphene that is worn on the teeth as a dental tattoo, to warn the wearer of risk for bacterial infection. This sensor is even capable of detecting the species of bacteria that attacks the patient's teeth during an infection. 
Since very few bacteria are required to make a person ill, detecting their presence as soon as possible in order to nip the infection in the bud would certainly guarantee a successful treatment. 
By means of implanting a certain carefully-construed sequence of amino acids on their surface, McAlpine has demonstrated that these dental sensors are able to recognise bacteria individually, gathering them just like the little hooks in Velcro stick to any felty surface. The sensors can even detect bacteria in terms of individual cells. 
The Spanish website lists this application of graphene and many other projects that employ this veritable material of the future. For more information on this project, check out their page on dental sensors:

4) A Quilt of Epic Tales Strung Together, Transcending Time and Space
My parents, Sten Magnus Dermark of Gothenburg and Elena del Carmen Bufí Laviste of Castellón (though born in Cojímar, Cuba), chose Sandra for my first name because it only has short vowels, and thus, can be easily pronounced in most languages that exist. My first surname is Germanic (der Mark=of the Margraviate, ie Brandenburg, a Prussian region), taken from my Swedish ancestry, while my second surname is from Ibiza, one of the Balearic Islands. 
Going up one rung, my mum Elena, whose first name is my middle name (a common practice in both Sweden and Spain), has the French Laviste for a second surname. And her own mother, Granny Ana (bless her soul), was a Laviste Arner, her mother's family hailing from Castile, the Spanish heartland. 
I got to know about my diverse pedigree (Ibizan, Castilian, Basque, and French on my mother's side; Swedish on my father's side) through family stories shared around a table or on a bedside. 
Some of these stories, veritable fragments of the past woven into the fabric of my life, are as novelesque, as similar to fairy tales, adventure novels, or classic films that I always remember... as those of the Basque Jesuit missionary executed during the Philippine Revolution, the French illegitimate child who fought for independence against the Spaniards in Cuba (and who, in true Cinderelliot fashion, founded a dynasty of plantation barons that lasted until the Cuban Revolution brought about the diaspora of the Lavistes), the two brothers who found themselves on opposing fronts and lost their lives on a Spanish Civil War battlefield (a tragic story, and rather true to life)... and of course Lilly, the crown jewel of Gothenburg society whose older brother guardian watched over her like a dragon, guarding her against prospective lovers, which made out of her an old maid who died childless (which makes me think of how gender roles and the perception of female independence have changed through the ages)... 
So this is my family story, a patchwork quilt made in the Eastern Spanish hinterland (Castellón de la Plana), but whose squares have been made in Gothenburg and Santiago de Cuba, Paris, the Philippines, and the Bay of Biscay, the Meseta, and probably the Mark of Brandenburg. An epic saga that spans a century of wars, revolutions, diaspora, crisis, elopements, self-discovery, tragedy, romance, and everything stories like The Snow Queen, Shakespeare's dramas, the Potterverse, and A Song of Ice and Fire have to offer... because these tales faithfully mirror the hopes and anxieties, the joys and sorrows, of the great mystery that we call human life.

Back to the Burrow

El Cau (The Burrow), located on the outskirts of a hinterland community in eastern Spain, was the centre where my primary education took place. 
It was and is an autism institution. 
And that is what made my education so unusual. 
Regional Welfare authorities, noticing my hyperactivity and phobic reactions at a Catholic Carmelite school when I was six (in October 1998), and, Asperger syndrome then not being known in the place in those days, I was reassigned to the Burrow, where I studied until I reached the age of sixteen, spending a decade self-taught by reading textbooks during my spare time. When I left the institute, I had a comprehensive grasp of every subject in the Spanish secondary curriculum except music and mathematics, the latter being a formal science and I having been taught in silence without teachers showing me what to do with fractions and negative numbers. 
Which led to me having the worst maths grades in secondary school, and to a lot of struggle to pass the exams without sign errors. 
For, throughout this decade of life at El Cau, I was the only talking student in a school of mutes and echolalics. Petted by all the teachers, intriguing the headmaster, having my own meals made by cooks who paid heed to my pet peeves... it all made up for the lack of friends, as far as I can see. 
Now a 24-year-old university student, I visited the Burrow a week ago to find new teachers, new students... inmates... new kids, not to say anything ambiguous, all of them mutes or echolalics. The days of mislabelling and misassigning aspies like me seem to be gone for good, but still it may happen that another one may come. 
My suggestion for reformation, should any more children with Asperger syndrome attend El Cau, is for them to be placed in a different class than the others, and have them being taught maths the usual maths-teaching way, by showing and telling with a blackboard (or whiteboard) rather than having them read in silence not to disturb their more impaired classmates. That way, maybe they will not encounter the difficulties that made it nearly impossible for me to get into university.

Including Sinethemba, a Hard of Hearing Girl

Sinethemba, like yours truly, can't hear anything when there are many people talking. Since I have had the same difficulty she currently faces during my own primary and secondary school years, I sympathise warmly with this young girl and will do anything, come hell or highwater, to help her with her educational inclusion. 
First things first: her fellow classmates and teachers should be informed of this girl's impairment. Knowledge is often what makes all the difference between a successful and an unsuccessful inclusion. 
It seems that our friend Sinethemba is more of a visual learner. Thus, the ideal environment would have her lessons in pictures and graphs, and, when the lessons are meant to be written, may they be in a font clear enough for her to understand. 
When there are too many classmates talking at the same time, it would be a good idea to take Sinethemba to study on her own in the school library or any other quiet, suitable studying place within the school. During phys ed class, to train the sport du jour on her own, detached from her fellow students. The silence would help her concentrate and make her able to understand the lessons better. Should this scenario happen during spare time at school (let's say a break or a wait between hours) instead of a lective hour, the coursebooks can be replaced with storybooks or any other entertaining reading materials to cheer her up and encourage her. Make sure she reads what she likes and likes what she reads. 
In the social level of school, this girl may face even rougher challenges than in the academic level. Her own awkwardness and the teasing and bullying from insensitive classmates may hamper Sinethemba when it comes to making friends. When it comes to this last challenge, encourage her to be herself, and to try to find common ground with at least a few students as awkward as herself (due to so-called disabilities, interests, or a combination thereof), and to stand her ground in the face of bullies. 
With this good advice, all we have left to do is hope that Sinethemba makes it through her now made easier school years.

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