A new day, a new beginning

Waking up this morning and seemingly having survived the "Mayan Apocalypse" I feel I have had a wake up call. It is time to start making some new goals and putting them into action. I find myself wanting to go out and collect rubbish and plant trees and save the planet in some way.....

It may seem a bit ridiculous to take on such a project, but it is something I know needs to be done. Having always been interested in the environment and nature in some way I have done small things to support projects working toward this aim but now I want to find a way to be more of a part of this work. Such a huge problem can only be managed by everyone doing as much as they can, and just like with the rest of my life I want to be part of the "everybody" in a positive way.

 Making a difference is not easy when almost everything we do in modern society has an environmental impact. This is totally reinforced and made worse by everything about the way our society makes us live. The marketing of products that you use a few times and throw away, plastic packaging, fossil fuels, chemical sprays......the list is long. It is a daunting prospect and one that is ultimately a bit depressing to think about. But as I sit looking out at a gorgeous vista of harbour, mountains and bushland it confirms for me both the rightness of this conviction and how much needs to be done.

I may feel like one voice alone right now and one who is not in the best physical position to go and save rainforests and free captive wild animals in all reality, but I know there are others out there who can do those things and more! So although I may be one voice right now, sitting at a desk in the early hours of the first day of a new era, I will use my voice to speak as loud and as long as I can on behalf of this place that we ultimately have taken for granted for so long, but which we call home, Earth!!

The Spirit of a Freedom Seeker or Disillusioned Deserter

Again my Facebook wanderings have presented me with a gem, in the form of a bloggers entry presented as a letter to their homeland in critique of its rejection or ignorance of its diverse population.

Here is the link if you are interested:
http://youdonthavetoagree.wordpress.com/2012/09/02/letter-to-singapore/#comment-263

I was fascinated by both the bloggers entry and the multitude of varied responses it received. It so intrigued me that I was inspired to leave a response myself, which is below.

"It is not just the young of Singapore who may feel the pull to explore the places where “the grass is greener” or where adventure and new opportunities are offered, those are qualities shared by many people around the globe. That spirit to explore, experience and have freedom is what moved human society from where it began to where it is today. It is what sent the explorers out into the unknown to find other strange and wonderful places and what continues to drive our exploration of this planet and outer space.

By exploring and travelling people have learned new skills and been inspired to create new things. They have gone back and shared these things with their home countries in most cases. So I think that all those who leave their homelands, whether it is to travel or emmigrate, they are not abandoning their country to remain in a static state but continue to add to the system.They will be in some way playing a part in the cultural shift or status quo by feeding ideas in their communities and spawning conversations which could spark change.

I agree that this young writer is romanticizing their experience, but they have admitted that themselves. This doesn’t make the points they have raised any less worth considering. It seems like the main point is not just that this person has become disenchanted with the preoccupations of their home country but by the way in which that effects the greater society. The experience of not being accepted is the quickest way for a society to lose people. 

Shutting out those who are too old, too strange or don’t fit in some other way is only creating lost opportunities of finding new ways to do things or understand things. If an individual is only kept in the work force when/if they are at their peak ability both physically and mentally then we are losing the wisdom of the elders and the creativity and energy of the young. Also the traditional views of those with disabilities being unable to contribute means the abiliities of these individuals is left untapped.

I don’t say these things with the view that inclusion and acceptance is something to be pushed because of its economic value but rather its social value. Our communities would be richer by having greater diversity and the prevalence of social issues such as crime and poverty would concievably be reduced. These things aren’t based on idealism, there are case studies to support it.

The perspective that Singapore is protectionist and unwilling or unable to change due to perceived threats from outside and inside its borders is probably quite true, but what isn’t is the assumption or implication that Singapore is the only country like that. The fact is that many other nations around the world have some variety of this stance as well. It is this self perpetuating fear or suspicion of the “other” and its associated greed that is holding us all back from being able to make the big changes that will benefit all communities globally. 

It is only when we stop our process of seeking, exploring and challenging that our cultures will stop changing. I fervently pray that such a day never comes, as that will be the day we lose our ability to adapt. And as things are and will continue to be in the future in terms of need and limited resources our adaptability will be even more critical to our existence, in a world that I hope is still worth being part of."

This really jumped out at me as an example of what many countries and communities are dealing with, what is our identity?, where do we go in the future?, how do we get there? and many other such questions. But not all countries are taking into consideration how to get everyone into the future. This is where those of us that can need to speak up and work toward making our communities somewhere that we can all participate and contribute. Because it should not just be what we can get from our communities and what they 'owe' us, but what we can give and do for them.

Questioning the questions of the everyday

In my daily meanderings of Facebook I came across a brief but brilliant video....

 This guys (Taylor Mali) speaks simply and powerfully about the increasing uncertainty in the way we communicate and connect with each other. I have written and talked before about the power of communicating and connecting as part of our growth and development as individuals. The sharing of stories, opinions and knowledge is also critical for the development of our communities and countries as things are shared with the next generation. But it seems that although many people still recognize the importance of stories and orating in this process, it seems that somewhere along the way, certainly in developed Western countries, our communication has become jumbled and fragmented. Somehow reminiscent of a jumble of binary code that scrambles the contents of a computer file.

 I know it is the very nature of language and culture to adapt and change. That is how as a species we have survived. But I cant help think that the trends in language, these -isms, that are becoming more common are having a significant and potentially negative impact on the eloquence and intelligence with which we communicate.

This may just be me but I would swear that peoples IQ drops by a point every time they add an unnecessary 'like' or 'totally', or other such fillers to their sentences.The same effect applies if they add a question mark to what would otherwise be a statement, though that suggests more a lack of certainty or confidence. It just seems to me that the person either; hasn't thought through what they want to say; they are trying to talk too fast and their thoughts cant keep up with their mouth or they simply don't understand or don't believe enough in what they are saying. I say this while completely owning up to the fact that I have also picked up some of these habits, at times worse then others, as well as the fact that my vocabulary on an everyday level has reduced. But seeing this video has reminded me of why I want to make an effort to stop myself from replicating these mannerisms of speech.

It seems important to do this because communicating, particularly when it comes to expressing an opinion is key to how our lives run. Right from the day to day small things, all the way to our participation in political discussion and contribution to how our communities function. This is especially true for people who are disadvantaged in the eyes of the crowd because of being different in some way, like a disability. That in itself can lead people to misunderstand or judge, so it is my mission to make myself as eloquent and well spoken as possible. Hopefully this will be some encouragement to the next generation of orators, who will take our place as the voice of our communities in the future. So I urge everyone to take a second the next time you want to express yourself and think about the things you want to say and what effect it will have on those to come.

Apia and more...

On the trip to Apia we got to see some more of the island as we travelled overland, taking a different route to the one we had taken from Aggie Greys to the Sinalei. We travelled through several villages (including David Tua’s hometown) and passed many family farms and gardens, some of which had stalls selling their surplus goods. Others sell their goods through collectives or to exporters based in Apia, where there is a produce/fish market and a craft market. Both are open six days a week, Monday to Saturday. The craft market that we spent several hours at was in a large warehouse with rows of small stalls selling jewellery, carvings, jandals, t-shirts, weaving and numerous other things. Almost all of the goods seemed targeted to tourists but there were a lot of local people wandering through as well. The most crowded area was the food court, particularly at lunch time, but I was really amazed that almost all the food looked to be deep fried. The only things that weren’t were banana cake and fresh orange juice as far as I could see. We ended up going to a café and getting something a bit healthier looking, which had the bonus of being cooler with air conditioning, as by that time we were beginning to melt a bit in the heat.

After lunch we walked the rest of the way trough town on our way to Aggie Greys by the harbour where we were meeting the taxi van. We found out that Aggie Grey is a business empire of sorts in Samoa or at least on Upolu, as there are two locations that the hotels is located at as well as several souvenir/food outlets we saw with the same name.

On our trek we followed along the boulevard/shore wall and enjoyed the sea breeze. This also gave us a great view of the harbour and the church and government buildings along the road. It was fascinating to see and work out the influences of various international groups and other countries and how that has changed over time as seen by the various buildings age, size and quality. One major feature of Samoa was the number and variety of churches, both in Apia and along the village roads. The level of pride that the villages and congregations place in these buildings was evident in the size, structure and “flashiness” of the buildings. Also the fact that a number of the existing churches were clearly being added to or upgraded reinforced this perception. It is a major part of peoples lives in the villages and pretty much everything stops on Sunday’s as people attend church once or twice on that day, as well as spending time with family on this ‘rest day’.

My Mum, Nana, best friend and sister attended a church on the Sunday while we were there. They travelled to a local Catholic church, near the resort, although there is a variety nearby. They told me it was a lovely service, although they couldn’t understand much if any of what was said as it was spoken in Samoan. But they all felt that the most beautiful things about the experience was listening to the singing and seeing the ladies clothes and hats. It was also a great way to see how communities come together and how families interact and behave. It was a particularly good place to learn about the protocols and hierarchies of respect. My sister mentioned a little child who was being disruptive and so was being handed around amongst family to settle him, but in the end was too much trouble for someone so was sent to the granddad or one of the other male elders. The elder man gave him a tap which quieted the child and made him settle and then the granddad gave the child a hug which made the kid smile again before he settled down for the rest of the service. It was interesting to hear a story like this to know how children and adults communicate in these situations.

Another experience of a part of Samoan culture was the Culture Day that the Sinalei holds weekly. There is a talk about weaving and other aspects of Samoan culture such as Ava (kava) drinking and sharing some traditional stories which goes for one hour, then a talk and demonstration of Umu (hangi) cooking later in the afternoon. It was interesting to compare what I knew of things from other countries in the Pacific including New Zealand that have related cultural aspects and seeing how they connected to what we were being told. The day was finished with a dinner cooked in the Umu that we had seen earlier and a cultural performance of dance, singing and fire throwing/dancing. It was very impressive with the voices of the performers creating such lovely melodies with the accompaniment of various drums and a guitar. The fire performing was truly amazing with the youngest performer being only eleven years old.

All the employees and performers at the resort were local people who all walked to work. It seemed that the majority of people, from school kids to the elderly walked everywhere and if they didn’t walk they might take one of the quirky public buses. We saw these during our day in Apia, with their old school box-y look with bright paint work and quirky individual names. We were told that the buses were converted trucks with the shell of the cabin with the passenger seats attached to the deck on the back of truck. I think these old trucks may have been old army trucks possibly from World War 2.

As I mentioned the roads are not particularly crowded, at least they weren’t at the times we were out. The private vehicles we saw were a mix of older cars and flatbed trucks that were a mix of European and American made cars, so some were left and some right hand drive, which was confusing to me. We saw a larger number of vehicles for the first time when we reached Apia on the market day coming up to a set of traffic lights. Initially I was a bit surprised to know that Apia had several sets of traffic lights but then I found out that frequently they don’t work so it didn’t really matter to the people. It then became a matter of close your eyes and trust the driver, two of the intersect lights that morning weren’t in operation at the time. Other then the slightly scary experience at the lights everything else about the roads was pretty good.

All the roads are sealed (or at least the ones we travelled on) and seemed in really good condition but they are a lot narrower then the main roads we are used to in NZ. The marked speed limit seemed to be quite low but many of the drivers on the ‘open road’ seemed to be treating it as a guideline more then a rule (particularly the drivers we had). But for all the ‘playing chicken’ with oncoming vehicles and dodging dogs, chickens and numerous school children the roads seemed very safe. I think partly this was because of the frequent speed bumps to catch out unwary speeders and that people generally seemed like chilled out friendly drivers.

Food and Accommodation

In Samoa the main exports are unprocessed goods like fish, banana, coconuts, taro and other food goods. There are processed forms of coconut products like coconut milk and copra that are also on the major export list as well as other lesser products. Many of these locally and regionally grown goods were part of the menu at both Aggie Greys Lagoon Beach Resort and at the Sinalei Spa & Resort where we stayed for the week. The focus for the Sinalei menu was organic and locally grown, as part of their efforts to support local growers. The major feature was fresh fruit, used in the breakfast menu and desserts and sauces in the lunch and dinner menus. Fish and prawns were the main protein (understandably) on the lunch and dinner lists which was cooked in a number of different forms, which were always delicious. One of my favourites was seafood pasta that I had one lunch, it was spicier then I would usually eat but I loved it. I was also surprised by the availability of beef, chicken and pork on the menu. I had forgotten about the long presence of pigs and chickens on the islands. These were introduced by the colonialists, but I definitely didn’t expect cattle. According to one of the local drivers many people raise their own chickens and pigs and some people keep small herds of cattle in amongst the banana palms and other fruit trees. One of the food items I enjoyed the most was the papaya or pawpaw, which I ate most days as a smoothie or as a crumble for dessert, aside from any part it might have had as a sauce or condiment in other dishes. It was a surprise for me to enjoy the fruit so much, as back home I am not usually much of a fruit person, but the papaya from the island is amazing, so different and much better then what is available in New Zealand.

The other big industry for Samoa like New Zealand is tourism. When we were there it was during term time and right at the end of university break time, so there were fewer travellers around. Because of our flight times, arriving so late/early, we stayed one night at Aggie Greys about 10 minutes away from the airport. It was a fabulous introduction to the tourist experience on the island. The grounds and main buildings were beautiful with many tropical plants and architecture in a mix of traditional and luxurious European style. An example of this was the impressive lobby/arrival desk, which was a large high roofed Fale (traditional open sided Samoan house/meeting area). It was an intricate wooden structure with luxurious European fittings like chandeliers and marble/polished tile floors. The guest rooms where we spent that night were much simpler but certainly comfortable, with an accessible open plan bathroom and air-conditioning. In the morning things looked just as lovely, as we looked around at breakfast. As I mentioned the main guest areas were large and luxurious, with a pool and spa treatment rooms, but the guest rooms were simple. This makes sense to me, as who really plans to spend much time in their room when you are visiting such a beautiful place.  I’m not sure whether there were a range of rooms with different layouts and facilities or whether they are all the same. The resort as a whole had more of a family and traveller feel and seemed quite active, although the initial impression had been luxury and decoration, when we arrived in the quiet of the night. The staff at the resort were very polite but the most sociable were the desk assistants and the manager who was a young charismatic Samoan man called Giovanni who previously worked at the Sinalei which is where we stayed for the next four nights.

In comparison the Sinalei was quite different. My initial impression was that it was similar to Aggies, although the entrance was less imposing and formal there was still a feel of luxury and quality. But this impression of luxury I think was also to do with the setting and the balance of unfamiliar and exotic architecture. Everything about the Sinalei was beautiful and had an atmosphere of relaxation and calmness about it, with natural looking water features alongside the main gathering areas like the dining area and bar. This atmosphere of calm and relaxation as well as the lower number of guests contrasted with the level of activity and larger numbers at Aggie Greys. The people who greeted us at the Sinalei were personal and friendly, seeming genuinely interested in who we were. I suppose it helped that the resort was smaller and the guests are restricted to 12 years and older. This helps to maintain the atmosphere that the resort is known for. It wasn’t that the people at the other accommodation had been unfriendly but these people seemed truly genuine and had the time and energy to stop for a chat. We, my sister, friend and I in particular, made friends with the guys and young women who were the waiting staff in the dining area. They would stop by our table on their rounds to check in with us and share a joke or answer a question. I also really appreciated their patience as sometimes some of my family members (who will remain un-named) can be a little indecisive. We also enjoyed learning some Samoan language from a couple of the guys who were generous with their time and patient with our awkward but enthusiastic attempts.

While we were staying at the Sinalei we had a ‘Spa Day’ the day before we went home, which was a lovely way to end the trip. I had a facial and a hand massage while the rest of the family had different types of massage. All of the sessions were in small cabins down by the water with windows that could be opened to the sea breeze. It was a lovely relaxing experience, although unfortunately the digger was being operated on the barge in the harbour, which was a bit noisy. The ladies who did the treatments were all so attentive and kind, being particularly gentle with me. I was surprised to find out that the lady who did my treatment had a relative who was deaf, but worked as a wood carver for the resort. It was so nice to hear that there were some opportunities for people with disabilities on the island, particularly after our trip to Apia and seeing a number of buskers and people just waiting on the street who were blind due to illness.

I will talk more in my next entry about my experience of Apia and some of my impressions of the transport and my tourist’s experience of the wonderful Samoan culture.

Tropical experience

Travelling to Samoa was a totally surreal experience for me as I had never really thought I would go to such a place and it was simultaneously so similar to but so different from the brochures, advertising and images that are conjured by traveller’s stories. There were of course the palm trees, banana and coconut trees as well as all the other gorgeous bright tropical vegetation and flowers but there was so much more to every aspect of the country and its people that I hardly know where to start.

I guess firstly I would have to admit that my experience was not exactly comprehensive in any respect but I feel that the experience I had did change some of my perceptions of the country as well as confirming some impressions and things I already knew. I think to do my trip justice and to give an informative description of the country and my experiences I will probably break it into several posts to this journal.

Starting with the geography of the country; it is made up of two main volcanic rock islands called Upolu and Savaii, with 8 other islets in the surrounding waters (some inhabited and others uninhabited). Both main islands are mountainous at their heart with narrow inhabitable coastal plains. This is where most of the population live and work, most people live on family and community land, growing coconut, papaya and bananas as well as other food crops like bread fruit, taro and manioke. The capital Apia is on the northern edge of Upolu which is where the international airport is located. We flew into Apia International airport at about 1.30am on a Saturday (in July 2012) and it was approximately 26 degrees Celsius with quite a high humidity, although it is considered the ‘dry’ season at this time. We found out that although it was the dry season it actually ended up raining almost the entire time we were there on the southern coast where we stayed, which apparently is a reasonably recent change to the climate of the island. As Apia and the northern part of the island had apparently got sun for most of the same days, which we were told by locals at the resort that this had been the reverse pattern until several years ago. But despite the rain there really wasn’t any reason not to go out and enjoy the water and the scenery, as the temperature remained in the mid to high 20’s even without the presence of sun.

The islands are surrounded by coral reefs which mean most of the beaches are fairly sheltered, though there are still dangerous currents and undertows/rips that swimmers and snorkelers still have to watch out for. Also when swimming or snorkelling it is a really good idea to wear light canvas boat shoes or something like that as there are sharp coral and rock formations as well as the potential for things like stone-fish or other injurious sea-life. As well as the dangerous sea life, (which are few) there are many beautiful and non dangerous species to enjoy observing. Although I am not able to swim or snorkel due to my condition my family did enjoy the water on my behalf, taking part in the snorkelling, swimming and kayaking. They were fortunate enough to swim near sea turtles on several occasions in the waters near our resort and saw a variety of diverse brightly coloured coral fish. It was concerning to hear that what I think was the Crown of Thorns starfish was extremely evident along the reef. This along with the huge damage from the 2009 tsunami and other activities has and is having a hugely negative impact on the health of the reef and the ecosystem.

I got the impression that most of the fish that is caught in the area is from the reef or just outside of the reefs with only charters or big commercial fishing boats heading out to the deep water well outside the reefs. This is just what my Dad did as he is such an avid fisherman, taking a charter trip and catching and big yellow fin tuna. Another participant on the same charter boat caught a Masi masi which is a large green fish with a blunt squarish shaped head; it seemed to be quite a popular fish to eat and was served as the fish of choice at the resort. The other type of fish used, that I think was more often eaten by the locals was the Parrot fish which is a lot smaller then the grown Masi masi. I will talk more about the local crops, our trip to Apia markets and travelling around the island in my next entry.

Tropical Times

Travelling is generally a challenge at some point whether on a practical, emotional or psychological level. But for many people with a disability I would imagine it is more on the physical side of challenges. Certainly that is my experience because of my Muscular Dystrophy condition. Periodically I have played around with the idea of travelling again as my mood and health have ebbed and flowed. The most recent was my brief foray into day-dreams about a trip to America, which didn’t materialize. This then transformed into ideas of returning to Australia. Unfortunately I also had to face the practicalities of life regarding that idea as well. After that reality check I had put the idea of travel to bed. Coincidentally though, it wasn't long after that I was offered the temptation of a winter escape to Samoa with my family.

 It was initially a bit of a shock for me as I had never considered the Pacific Islands as a destination that would be suitable for me with all the equipment I have and my mobility restrictions. I am also by nature and necessity a create of comfort and like to be in places and situations where I can still be ‘independent’ in my electric wheel chair and all the other things that help me feel comfortable. So it took some persuasion from friends and family and some introspection on my own to decide that it was the right time to say ‘YES LETS!! I was still a little anxious about the practicalities but the family motto has always been ‘anything is possible if you want it enough’. So here I am a week out from my departure date and feeling much happier with just a few remaining butterflies in my stomach.

As always my adventures are learning experiences and require planning and strategizing on a level akin to a military invasion. Fortunately this trips plan has been in the capable hands of my mum and her local travel agent. In some ways this has been a weight off my mind after previous travel planning escapades involved me being in charge. This time though, with me not taking the lead it has been testing my inner conductor/control freak to have someone else make the arrangements. I have not entirely been hands off as mum has worked with me around finding out things I already know.  As a result of our shared input and her own planning mum has learned a lot about the challenges and complexities of travelling with my current condition, regulations of airlines and travel companies. All of which have changed since I last went overseas with the family when I was much younger. It has been great to bring out some of my previous learning’s, namely; which airlines can accommodate my needs, the information they need regarding mobility arrangements, seating, transport, packing and paperwork.

Because this expedition will be a new destination and circumstances are different I have had the chance to learn a few new things.

1. Get a letter from your GP or specialist outlining your condition and listing any and all medication you will be travelling with. Keep a copy with you in your hand luggage and a copy in your suitcase for safety.
2. Take your medication or at least a portion with you in labelled and/or sealed containers/bottles in case your luggage is lost in transit. This would be especially important if you need regular doses to stay well and functioning.
3. If you are taking a manual wheelchair, make sure you have some way of securing foot rests and any other removable parts so that they can’t be lost. For example the manual chair I am taking has a removable head rest, back rest and foot plates and I am going to ensure that they can’t totally dismantle my chair. This will hopefully stop any damage or alterations to the specific settings on my seating.
4. If you have a special cushion to sit on it is a great idea to take it with you for sitting comfortably on the aeroplane.
5. Check with airlines or via your travel agent whether the airline will be able to provide the arrangements or assistance you need to board and exit the plan, as well as using the bathroom while flying if necessary. For me I will need a seat harness for the plane seat to help me sit upright and will also need an aisle chair to get to and from my seat. (An isle chair is a narrow, basic wheelchair that you can transfer into and be wheeled to your seat and then transfer or be assisted across.)
6. Make sure you leave plenty of time for everything, including planning and research. This is particularly important if you need specific facilities or equipment. An example for me is the need to rent an oxygen concentrator for use at night. There were none available in Samoa that I could find but there is a company in New Zealand called Invacare who can rent out different machines, depending on the requirements.
7. Take a basic tool kit if you are travelling with equipment, for example I will take an Allen key set, plumber’s waterproof tape and a tire patching kit to be able to make temporary repairs on my chair if needed.

These are the main points I have noted so far in my preparation. I hope to post another one or two posts before I leave and then I will post something hopefully either while I am away or when I return. Hopefully there wont be too much of a delay in coming up with a post when I get back. Fortunately I shouldn’t have to worry about jetlag as there is only approximately an hour’s difference between New Zealand and Samoa’s time zones. One thing I am definitely not looking forward to though is the climate shock when I get there, going from 10-12 degree days to 24-29 degree days and then the reverse when I return home, brrrrrr!!!

Pity

Attitudes are central to informing how we act and speak. As an advocate for disability rights and as someone with life experience of disability I know how important this is. This has had a big impact on the way I live and what I speak about in my public talks. Generally I am encouraged by people’s positive attitudes about disability awareness, inclusion and valuing of talents in individuals, rather then the focus on weakness, deficit and loss. It is one of my major focuses in my work with people, to help them realize what impact they can have to support and improve others lives just by their words.

I feel very strongly about issues of discrimination, disempowerment, control or inequality in any circumstance. But due to my personal experiences my main focus is disability. It is difficult to understand when people still hold on to old attitudes that have clearly and for good reasons become outdated and therefore obsolete. This brings me on to my main point of this little rant.

Yesterday at a gathering where I was speaking about my life, opportunities I have had and how important helpers have been in supporting this. I met someone who gave me a wakeup call on my perception that everyone had caught up with the memo about pity being out and positivity being in. But anyway, to make this situation clearer I will fill you in a bit more. As I have mentioned I speak about my life, the people who have been and are part of making it what it is, as well as some of the influencing factors like policy, societal values and attitudes. Overall I was happy with my performance and the audience seemed receptive to my message. But during my Q & A session I was confronted with something that I have not had to deal with for a long time- a person who seemed to pity me and my situation.

I speak for myself as a person, not just one with a disability, that I do not want pity! I do not ask for pity. I do not get out of bed each morning and think “How can I get more pity and sympathy today?”  As a result I had difficulty answering the questions without making pointed remarks about how I keep focused on the positive things in my life and tried to keep on topic. My reaction to this person was initially A) shock that they were going to be working in the disability field and B) surprisingly, anger. Anyone that knows me will say I generally would be the last person to show frustration but this experience really needled me. Am I over-reacting, I ask myself. Possibly! But I just don’t know how to comprehend this experience. Her attitude that came through in her questions and comments were of the “poor you” type. It was like getting slapped in the face with a wet fish.

This experience has clarified for me just how much I dislike being pitied and it has made me more determined to help change the remaining negative perceptions around disability. Yes, I admit there are hard days and times where things seem unfair, but we all have these kinds of days. So I ask everyone who lives with or has experienced disability do we need pity, or would we rather receive positive encouragement and support? I would say I would rather have the empowering and helpful input of people to make more things possible rather then focusing on what’s not.

Prompt #21: On an empty page of a journal cover every inch of the paper with the first word that comes into your head.

 A bit cliche but I think it is so important and a big part of my life, so like the song "Nothing but Love, love, love!!"

The lighter side of travel- A warning

The great Faux Pas of China.
1. Spitting- they spit where they want, whenever they want. Inside and out. Check the direction of the wind before standing behind somebody.
2. Apartment plumbing is medieval and is a system all of its own. Beware.
3. There is no such thing as a rubbish bin, they throw it anywhere.
4. Traffic lights and laws are purely just a guideline. So beware when crossing the road at all times.
5. There is no such thing as queuing, especially outdoors, they like to push and shove and be first for everything.
6. The roads are subjected to organised chaos. Don't be surprised if you are being driven on the wrong side of the road with oncoming traffic heading straight at you.
7. Chinese love to smoke, everywhere. if cigarette tossing was an olympic sport the Chinese would win Gold everytime.
8.Nose picking is rampant and done by all. Anywhere.
9. They like to slurp their food and make as much noise as possible while eating.
10. Shop assistants in any store will follow you around until you buy something or leave. Just ignore them.
11. Most foods in supermarkets are not labelled. Prepare to get experimental.
12. There is no such thing as punctuality. They arrive when they think it is a good time.
13. Most hairdressers are male, and totally camp.
14. Young children (and some adults) go to the toilet in really public places.
15. Avoid public toilets where possible. they are generally just a hole in the ground with no privacy (everyone can see what you are doing). They seem to have really bad aim too.
16. Don't drink tap water. Just don't.

 (This is borrowed from a friends travel journal of her experiences while living in China) 

 

Prompt #20: Make something you can keep in your purse, or the palm of your hand that reminds you of who you are.

This isn't exactly an answer to the challenge or I guess you could say I have taken it a step further. I literally carry my reminders on my skin.

 This is my reminder of who I am, where I came from and who I am connected to. It is one of three very unique tatoo's I have that all have a story and symbols that go with them.

Prompt #19: Walk out of a door. Take ten steps to the right. Snap a photo.

 This is a patch of the early winter glory that is my garden (or at least a part of it). There are mostly greens, browns and reddy orange colored growth in this patch, but I look forward to the spring growth of bright greens, yellows and blues.

Prompt #18: Write a love letter to yourself.

Dear Tegan

There are so many things about you that are special; your sense of humor, your kindness, your thoughtfulness, your optimism….I could go on. I know it is not always easy for you to recognize these things in yourself or to generally see how talented you are, but that is what your friends are family are there for. I know it is also not always easy to cope with what life sends you; the challenges of your health and the other things that fall apart or don’t happen because of that. But I need to remind you that you ARE strong, resilient and positive, you are here on this earth for a reason. You are here to love. To love yourself as deeply and wholeheartedly as possible, so that you can learn and embrace who you are. Then you can go out and share that love with the world, as I know you are driven to do.

Keep engaging with the things you are passionate about, and spending time with the people who encourage, excite and stimulate you. Make your life as rich and full as you can. That way you will be following your dream and being true to yourself. Don’t let those doubting thoughts and dark shadows sabotage the light within you. That light is your spirit and it is what other are drawn to so the more light you shine out the better.

Care for every aspect of yourself as you would for someone else, take your own medicine. Remember, “I love myself, I am special and I am a being of light”.

Shine on. Love and blessings.

Prompt #17: What would be the soundtrack to your life and why?

1. Circle of Life- Elton John

2. Courage Is- The Strange Familiar

3. Brown Eyed Girl- Van Morrison

4. Morning town Ride- The Seekers

5. Wannabe- Spice Girls

6. Heal the World- Michael Jackson

7. Black or White- Michael Jackson

 8. A Thousand Years- Christina Perri

9. I want to Hold your Hand- Glee version

10. Somewhere only we know- Glee version

11. We are Young-  Fun

12. Lets twist again- Chubby Checker

13. Where is the Love?- Black eyed peas

14. Welcome Home- Dave Dobbyn

15. Somebody that I used to know- Gotye &Kimbra/Glee version (both awesome)

16. Not Alone- Darren Criss

17. Human- Darren Criss

18. Who you are- Jessie J 

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Lion King was my favorite movie when I was a kid and 'Circle of Life' sums up how I see life and the world. I see it as a very profound and tounching song.

'Courage Is' means a lot to me as I try to live with courage and the lyrics of this are a good reminder of its power to keep us moving forward. Also it is mentioned in a fanfiction that I read ages ago and it fit so perfectly that I liked it right away and the more I listened to it the more I realized the significance for my own life.

'Brown eyed Girl' is a car trip song from my childhood. If my sister and best friend was with me on a trip this song would almost always come up at some point. So it has connections with summer, beaches, fun times and laughter.

'Morning Town Ride' and the Seekers in general are connected very strongly with my childhood and my memories of my Poppa (grandad) who always played music by this band when we visited. We would sing along to some of the songs together even though we werent great singers :)

Spice Girls and their first song 'Wannabe' represents so much about my childhood in the mid 90's and reminds me of parties, dancing, singing and dressing up to perform. I used to dress up with my sister and friends and we would put on shows for anyone.

Michael Jackson's songs in general are all amazing, but both 'Heal the World' and 'Black or White' are such powerful songs in their message of love, acceptance and care for the world and the people in it. I think his music has stayed connected with me as it was so prevalent during my childhood in the 90's and being able to see him in person when I was 9 years old had a big impact on me.

I am a real sucker for emotional stories and 'A Thousand Years' by Christina Perri epitomizes such a story for me. It is both a teaser and a promise of what true love could be like. The idea that possibly there is someone out there who I could connect with and who could love me beyond this lifetime. Who wouldn't fall for a story like that!! Also it is a song I have connected to a fanfiction that basically follows the idea of love over coming obstacles to allow two people to be together. Their love is so special that it is not just in this lifetime that they are to be together, but others, future and past, essentially it is destiny. This is truely my favorite story and really shows my true colors as an idealistic romantic.

Glee in general is an awesomely positive part of my life, but the guys that sing these songs on the show are absolutely amazing and I admire them so much. Chris Colfer who sang 'I want to hold your hand' is brilliant and this scene where he sings this to his ill dad just epitomizes their amazing relationship. This in turn reflects the awesome relationship I have with my Dad, he has supported and encouraged me through so much and this song represents that for me.

'Somewhere only we know' sung by Darren Criss is also incredibly beautiful. I love the reasons his character, Blaine, is singing this song and I guess it just pulls on the heart-strings of this hopeless romantic. Also I find that its lyrics about having a special place to get away to and just to be together and be yourselves together is pretty amazing in connecting as a song with my friends. Because when I am with my close friends I can be exactly who I am and not pretend. That is the greatest gift of any friendship, unconditional acceptance and love.

'We are Young' is such a catchy song and it has kind of become my anthem recently. It kind of reminds me not to take life too seriously and to hold on to my inner child. So I have embraced my old habits of singing at the top of my lungs when the mood takes me and occasionally having dessrt for dinner because I can. It is a song I love to sing along to with one of my friends and it is so great being able to share and bounce off each others enthusiasm and energy. 

Rock and Roll music was one of the first genres I was introduced to by my parents and so this song ('Lets twist again') epitomizes my early childhood memories of music and years afterwards where such music continued to have a connection with parties and fun.

Blackeyed peas represent my teen years and I have particularly always liked their first big hit, 'Where is the love?'.  It sums up how so many of the problems around us are because people don't care and turn a blind eye to all the fighting and poverty, suffering and violence. It made me want to do my best to show kindness and make a positive difference.

Welcome Home is a very sentimental song for me as it brings out a bit of my Kiwi (New Zealand) pride. It is written and perfrmed by a Kiwi artist Dave Dobbyn who s a bit of a legend. I love the spirit of this song, how it talks about generosity and having open hearts and arms for each other. I feel like it says a lot about the good side of Kiwi culture and the beautiful land that I am so proud to call home.

'Somebody that I used to know' is such a popular song and as a Kiwi it is so thrilling to know one of our young stars has been part of that success. Kimbra is from Hamilton where I am also from, so that is extra cool. It was extra special to see it performed on Glee and to have it done so well by Darren Criss and  Matt Bomer. It is a measure of a songs success in my opinion to have it performed on Glee.

'Not Alone' is an inspiring song from an amazing songwriter, I have a huge admiration for Darren Criss's music writing and acting etc (triple threat). It reminds me that there are always people who will support me and that if things are difficult at the moment they will get better. I really enjoy A Very Potter Musical and A Very Potter Sequel. which are always a good pick me up. I have experienced personally the uplifting power of this song and have heard many others talk about the inspiration etc they get from this song and others like it.

'Human' is a quirky little song that jut reminds me not to take myself to seriously and not to beat myself up if I make a mistake. It is also a good reminder to see each other as equals and not to get caught up in hype or gossip but to get to know someone for who they really are.

'Who you are ' is an awesome song and has the same effect as Not Alone and Human, in that it gives me a reality check on life and to appreciate my talents and to work on my weaknesses so I can help others.

Prompt #16: Make something–anything–out of only what’s in your immediate vicinity

 I put together a random costume from the decorations I had on my wall and odd bits of stationery. You cant see it but I am wearing a bracelet made from paperclips with a heart charm.

Prompt #15: What is your biggest fear? Turn it into the villain in your next story, give it a name, draw a picture of it…what would it wear? What would its voice sound like?

Prickles is my villian. It represents pain, hence why I have made it all red and orange and spikes and claws and sharp teeth. It causes problems of pain wherever it goes and is the biggest thing I dislike in life. Sometimes its prickley, sometimes it stings or burns or just makes everything foggy and grey. Thats why I surrounded it by grey fog. It can shoot lightening bolts out of its fist. Its voice sounds like a mix of crunching gravel, squeaky hinges and dry leaves.

Prompt #14: Take a black and white photo of a “classic moment” in your life. 

Tess and I chilling out while on summer holiday with a good book.

I knows its probably not what was intended by the phrase 'classic moment' but I am taking it to mean typical. Finding me in a situation similar to this, where I am curled up somewhere with a book and an animal for company is a fairly common occurence. I love reading and I love animals.

 Prompt #13: Write a thank you letter to your Mother, or the most important woman in your life. 

Dear Mum

This is a late Mothers Day letter that took me far longer to get around to writing then it should. I know in our family we are practical people and that words and actions of love don’t seem to come easily, but I have to say there has NEVER been a single moment that I EVER felt unloved. There is so much you have done for me on so many levels, in big and small ways. It amazes me how you have looked after all my needs as well as the rest of the family and dealt with all the other things that have come long without throwing in the towel. For this and so many other reasons I want to thank you.

I love your courage and strength of spirit. You have dealt with sleepless nights, stress, worry, budgets, cooking, cleaning and a million other things with so much strength, grace and good humor that I feel no-one could ask for a better mother. I can’t imagine what you have been through every time you had to sleep by a hospital bed for my sake and had to be away from Rose and Dad. As well as all the tough decisions, compromises and sacrifices you have made. This is the example of strength and courage I seek to follow as I continue on my path of adulthood and independence.

I love your generous nature and how you have led your life in a way that has benefited so many others. All the sports groups, school trips and community groups you have contributed to so willingly and graciously to over the years. I feel as though you have not just been a mother to your own family but a mother to the community. In the way you have supported and strengthened groups and individuals to grow and thrive. It is also shown in your care for so many people, the way you have opened your arms to those people who have been part of our lives over the years. There has been many a friend who wished you were their mother or that they could adopt you as their mum. But I have to say I wouldn’t want to give you up, but perhaps we could share.

I love your sense of humor which has helped me through so much. I think it has gradually absorbed into me, as I hear myself breaking out jokes and quips in moments of stress just as you have done so many times. It has brought many a smile to my face hearing you break into song or whistling a tune as you work away at something. I love your voice and I don’t know whether you ever knew but I when I was little I would call you the Lark when you were singing around the house. I think this is part of why I love music so much and will happily sing along any chance I get. The moments I have watched you let loose and bust into song and dance with Rose at the drop of a hat was always hilarious and just another reason why you are the coolest mum ever.

I want to thank you with all that I am and will grow to be for all the love, care and time you have graced me with in life. I need you to remember that although I might not express my feelings very often that I am always grateful for everything that you have done (maybe not in that moment) and that I love you deeply.

Arohanui,

Tegan

Prompt #12: Pick your favorite poem and record yourself reciting it. 

I have never really been into poetry, although I love language and words. But this poem, Stil I Rise by Maya Angelou is so powerful that from the time I first read it it stuck with me. I really identify with the intention and feeling of her words. The way she refuses to accept limitation, oppression or discrimation is so uplifting. Her manner of 'sticking it to the man' and saying I will not accept being treated as anything less then the beautiful, sexy, unique individual that I am is what really speaks to me as the reader. I may not be from a culture or religion or racial group that has experienced and suffered from slavery or discrimation in the way that Maya was writing about, but I share her fighting spirit. I know what it is like to experience limitations and set-backs and to face the ignorance of strangers, but like Maya I have never accepted that such situations will alway exist. That is why I speak and write and live in a way that will hopefully help to change how things can be for others in similar life situations in the future.


Here are the words from Still I Rise;
You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I'll rise.

Does my sassiness upset you?
Why are you beset with gloom?
'Cause I walk like I've got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don't you take it awful hard
'Cause I laugh like I've got gold mines
Diggin' in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I'll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I've got diamonds
At the meeting of my thighs?

Out of the huts of history's shame
I rise
Up from a past that's rooted in pain
I rise
I'm a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that's wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

Prompt #11- Make a creative art piece with a ticket stub based off of how the show made you FEEL.

 Those who know me well know that I am passionate about 2 things; music and people. That is why I adore Glee. I don't care if some people disagree or think I am too old for such a show, but I love what it represents and it makes me happy. 

It has so much popular music performed by some seriously talented young actors/performers. It has been so much fun watching how the characters each person plays has changed over the 3 seasons so far and as a result their music style has changed. This is why I really enjoyed the Glee Live Show at the movies. So much fun humming along and enjoying watching my favourite actors playing around and interacting with the crowd. Watching the show like this is the closest I would ever be able to get to seeing these people or the show as I cant travel to the USA because of my disability. Also the show of energy and enthusiasm that I get from just watching the performers and the audiences reaction is really uplifting.

I also appreciate hugely the effort, passion and commitment these actors have put into their roles. As a result people young and old who have felt like outsiders or struggled in some way because of their differences have been given a voice and outlet for their experiences and feelings. That is the other great thing about the movie is being able to see and hear how some others have had positive experiences as a result of the show, its music and characters.

Prompt #10: Take a photo of something that sparkles. (I encourage you to think outside the box here….)

 This is a photo of my parents, myself and my sister when I was 13 years old (so a while ago now) in the Port Hills overlooking Queenstown in the South Island of New Zealand. We spent a month caravan tripping around the whole South Island. It was one of the best experiences of my life and on this day it seems that the early autumn weather was perfect. My parents and sister had just been tandem parsailing out over that beautiful view in the background. So this is my 'sparkley' photo because of the weather, the memories and the time with my family.

 

Prompt # 9: And you thought fairies weren’t real __________ (finish the story.)

“And you thought fairies weren’t real?” said my little sister as she bounced on her bed excitedly, waving her arm enthusiastically in the direction of her window. I smiled from her doorway as I watched her bouncing. “What are you talking about?” I asked as I looked out the window. Rosie stopped bouncing but continued to wave her arms animated as she babbled about seeing fairies outside her window in the night. “They were so pretty when they were flying around and I saw them dancing around over by that pretty bush with the blue flowers, but all of a sudden they just disappeared”, she exclaimed starting to bounce again in her excitement. “Come on, I’ll show you, maybe they left something behind.” Jumping off the bed and dashing through the door dragging me with her.

Stepping out onto the grass I could feel the dampness and slight chill immediately which was reinforced by the tiny droplets of morning dew I could see sparkling in cobwebs and on leaf tips of plants all around us. It must have been a cold night for the fairies party last night” I said to Rosie, humoring her enthusiasm as she continued to pull me across the garden. She suddenly dropped down onto the grass a short distance from the bush she had pointed out earlier, searching around like a bloodhound. I watched Rosie carefully as she crawled around in the damp grass pointing out things I couldn’t really see. “Look” she said, pointing to a flattened area of grass, “that’s where I saw them dancing around. And look, here are the little mushrooms, they used them for seats.” I started shaking my head and getting ready to persuade her that we should go back inside, realizing we had both run outside in our pajamas and slippers. Something suddenly had caught my eye, a slight twinkling under one of the leaves, I peered closer, it definitely wasn’t just light reflecting off the dew. This was something giving off its own light. I crouched down next to Rosie as we looked at it together, both captivated by this beautiful little creation hanging from the leaf. It was the tiniest, most intricate lantern I had ever seen.

Rosie reached out and took it very gently between her fingers. Laying it on her palm it was about the size of a baby pea. “Maybe we should take it inside so no one else sees it” she whispered. “We can leave it out for the fairies tonight; I’m sure they will have missed it and come to get it.” Very carefully Rosie stood up, moving as though what she held in her hand could break at the slightest jolt, which I supposed was possible. I followed her quickly inside, realizing again how cold it was.

Returning to her room we quickly found a little box to hide it away in. “Remember, we don’t want mum or dad or anyone else to find out”, I stated seriously, “It could cause all sorts of problems so we have to be cautious today. You can’t go playing with it today or anything, it needs to stay in the box till tonight.” After that we both went off to warm up by the fire with warm drinks, while we waited for the rest of the family to wake.

Throughout the day I made all sorts of excuses to mum to be able to be around Rosie or to pass by her room. I told myself it was to make sure she didn’t take the fairy light out of its hiding place, but really it was the feeling of excitement of sharing a secret about something so magical. Later in the afternoon I was passing by her room and I felt myself being drawn to that little box we had hidden it in. I tiptoed into the room, looking around cautiously. I took down the box, opened it and looked again in wonder at this tiny glowing sphere. Suddenly Rosie came through the door and looked at me crossly. She stood with her arms crossed and a scowl on her face, looking like a miniature of mum before she would launch into a tirade. “What are you doing?” she hissed, “You told me not to play with it today. If I cant you definitely shouldn’t. You are supposed to be the big sister”. I looked down at the box, feeling guilty. I was starting to feel like the naughty child caught with their hand in the cookie jar.

“You’re right”, I said closing the box carefully I got up and tucked it back on the shelf in amongst all her other bits and pieces. We left the room and the rest of the afternoon passed with me being able to resist going back to look in the box. That night before bed I whispered to Rosie that I would come to her room at 10pm so we could sneak it out to the garden.

I lay in bed that night listening to the clock ticking through the quarter hour, half hour and hour chimes. It was just starting to get hard to keep my eyes open when I finally heard the 10 o’clock chime. I quickly shoved on some clothes over my pajamas and crept down to my little sister’s room. I knelt by her bed and gave her shoulder a gentle shake. She grumbled and turned over blinking at me sleepily. “Come on, do you want to return the fairies light or what?” She rubbed her eyes and sat up slowly before throwing back the covers. I noticed she was already wearing clothes. She grabbed her coat that was sitting on the chair and stuffed her feet into shoes. “Hurry up” she whispered as she picked up the box and headed out the door. ‘How had the tables turned again?’ I thought to myself, I shook my head, in disbelief as I hurried to catch up to Rosie as she disappeared down the dark hallway.

The click of the kitchen door lock sounded as though it echoed throughout the house, we held our breaths in panic. When there was no movement in the rest of the house we crept out and darted across the lawn, making our way to the bush by the faint glow of the moon. Rosie carefully put the box down on the ground and opened the lid before daintily picking up the tiny lantern and hanging it from a leaf. We both stepped back carefully and looked at the twinkling little orb for a moment, before I nudged my little sister and gestured back toward the house. We crept back into the house and retraced our steps to Rosie’s bedroom. Curling up together under the covers to warm up we both peeked out the window and saw the tiny pin prick of light standing out against the dark of the bush. We started a whispered conversation as we imagined what the fairies were really like, where they went when they weren’t partying in our garden and all sorts of other things. Eventually Rosie became quieter and less responsive and I realized she had fallen asleep. I decided I would keep watch and wake her if I saw anything.

All of a sudden I jerked awake. I blinked my eyes rapidly to try and clear them and looked out into the garden. I heard the noise that had woken me repeat again. It was the faintest tinkling of a bell. I squinted in the direction of the bush and realized the light was no longer there. I heard the tinkling again but more furious, so I slipped out of bed and hurried down the hall and fled across the lawn in my bare feet. I realized the box was still on the ground at the base of the bush, but it was no longer open. So I crouched down and gently opened the lid to reveal a tiny little person with wings. As soon as the lid was drawn right back the fairy zoomed up into my face and blew a handful of shimmer dust at me before zipping off into the dark. I rubbed my nose and sneezed when the fairy powder tickled as I tried to peer into the darkness where the fairy had gone. It obviously hadn’t hung around so I took the box back with me and went to bed thinking how there was no way now that I could tease my sister about believing in fairies.