Tanzania, PWS, and Easter Eggs

By MH

My first exposure to a radically-different culture came when I was 20 and spent 6 weeks visiting my sister, who was at the time teaching in rural Tanzania. During the trip I reached two conclusions:

 1. The implications of material poverty and global inequality can be truly devastating for entire communities.  Not a particularly surprising conclusion to reach, I realise, but still one that no amount of advertising by aid agencies or academic learning had really convinced me of until that trip.

2.  Regardless of our material situation, we can all learn something from each other.   

The penny dropped most forcefully for me in relation to this point on a bus trip.  I use term bus loosely, as the vehicle was, in fact, a flatbed truck for which I and an implausible large number of other prospective passengers waited to board one morning.  As I stood there a Tanzanian  lady with a baby in her arms and a young child by her side silently lifted the baby into my arms and then strode ahead to secure her place on the bus.  Much later, after I had boarded the bus with her baby and held it while the journey progressed, she retrieved her infant without a word or gesture of thanks.  She hadn't asked for my assistance because she had taken it for granted.   In her culture it was the norm for childcare to be shared.  

I left Tanzania with a heightened sense of social conscience and went on to contribute to and volunteer and work for national and international charities.  I also prided myself on not getting overly hung up on consumerist aspirations (nice car, expensive clothes etc.).  

Of course it's easy to be idealistic and embrace values such as sharing and cooperation when one has few responsibilities.  When my first child (who has PWS) was born, this forced a re-evaluation of priorities.  While I could still appreciate that many people had needs far more immediate than those of my son, I wondered whether the right thing to do was in fact to save more and more of my resources to secure his long-term needs.  After all, where I live there are no guarantees about what services the state will provide for him.  Or should I direct my resources to supporting people with PWS in the country in which I live and advocating for improved services for all in my country?

My son has recently turned 10 and so I am somewhat removed from the early shock of his diagnosis.  While I try to save for my son's future and to contribute to improving services for people with PWS in my country, I remain convinced of the merits of cooperation between countries and cultures.  Given the reality that there are huge differences in the levels of resources available to people in different parts of the world, I firmly believe that those of us who are materially well-off (by global standards) should donate money to support those who are not.  I also believe that through cooperation we will all ultimately benefit.  Increased awareness about how different cultures operate will, hopefully, enable us to identify the best bits of different ways of living and to integrate some of those elements into our own societies... I know I'd like a bit of the culture that suggests that those whose childcare needs are greatest can rely on their neighbours for help.

I support IPWSO's mission because it seeks to improve the life chances of people with PWS around the world and facilitates learning among cultures.  It does this by providing free diagnosis services, information and advice where there is no expertise, and by linking peoples and communities.  If you are reading this you are probably materially better off than most people in the world.  Maybe you are intending to buy Easter eggs this year.  If so, please also consider giving the cost of a couple of Easter eggs to IPWSO to help those who have less than you do.  

Happy Easter!

(You can donate via iDonate on our webpage...)

Easter time musings

As a child, I used to love Easter.  There was a solemnness about it that made it different from Christmas with its joyous lead-up to an exciting occasion.  I wasn’t too sure why, but I loved the peacefulness.   Easter was quieter, much more low-key and didn’t entail a huge family dinner.  What it did have, every time without fail, were hot-cross buns and an Easter egg.  Sometimes it was a big (in my eyes) chocolate Easter egg, and sometimes it was the smaller one which only cost 6d and was wrapped in bright coloured tinfoil that you could smooth out carefully and make pretend butterflies from.  I didn’t ever like the big hollow Easter eggs as they were just that – hollow.  Empty.  And just rather dull.  But the squashy marshmallow eggs were a treat worth waiting for.

As I grew older and the Christian meaning of Easter became apparent, Easter took on a new meaning and one which took a bit of understanding as it stood for both death, and rebirth.  Chickens and rabbits became woven into the whole fabric of Easter and although it was not the season of Spring in our land, there were certainly plenty of rabbits and autumnal hatched chickens.  Easter now became something to do with the essence of life, but the eating of Easter eggs was still greatly favoured in our house.

Older still, and the reality of the Easter story and the part played by the Church meant understanding the Biblical stories of Christ and their relevance in today’s society.  Easter became a season divided into a secular society celebrating the Spring equinox and the Christian society celebrating the resurrection of Christ.  It was a time of learning the differences between secular and religious communities, and between Christianity and other religions.

But there were still Easter eggs, and hot cross buns and, now, a greater understanding of what the holiday was all about.

Then came marriage and babies.  One of the babies had Prader-Willi Syndrome and quite suddenly things like Christmas and Easter became food festivals to be treated with greatest caution.  For weeks before the Easter holiday, shops and supermarkets were gaily festooned with Easter eggs, each year getting bigger and bigger, more and more outlandish.  No longer just hollow eggs, these were filled with even more chocolate.  There were rabbits, chickens, and all sorts of figures made out of chocolate: chocolate money, chocolate cakes, birds’ nests, birds’ eggs, all variety of birds and rabbits to make shopping a nightmare.  The whole Easter egg thing became a competition about who got the most, and kids would be eating them at school long before Easter hove into view.

What was I going to do?  By now there were three children and the one with PW was the youngest.  The oldest were used to the tradition of an Easter egg – more from grandparents, aunts, uncles and so on – and now, well, was I going to have to ban this?  I had to start somewhere, so I persuaded the wider family not to give our children chocolate eggs, but if they felt they had to give something, to do it when the youngest was not around.  We introduced the idea that our chickens laid eggs and on Easter Sunday there would be one special egg – and happily they did!  Easter, like Christmas, slowly became more low-key, still celebrated, but without the emphasis on food.

Time has rolled on, and around the corner Easter is waiting again.  My daughter (the one with PW) amazed me the other day by saying she thought this year she would prefer an Easter bun rather than an Easter egg.  Not sure whether that will be a statement set in concrete, in fact I strongly suspect it is a ploy to have both, but whichever, you can be sure that if you ask her for a bite of either, she will willingly share it.  I rather think many others of our extended PW family are the same and that strong streak of generosity is in all.

Perhaps you are already buying up the Easter eggs and Easter buns, ready for the festivity?  Perhaps, this year, you would donate the cost of a few eggs to IPWSO so that we can continue to help those families in great need?  You can go to our Easter Appeal (click on "Sponsor") to donate.   We would be so grateful for your support!