Type One Peers: A Reflection & Proposition

Post 10 by Lucy Allen

Peer feedback is such an integral part of the design process and allows for further development and discussion of an idea. When discussing my draft proposal with a classmate I was pleasantly surprised to discover that they had quite an in-depth knowledge about Type 1 Diabetes, not only from the perspective of understanding the disease but also the issues surrounding the topic. This really helped when discussing my proposal and meant that I received some fantastic feedback that has allowed me to develop my proposal soundly.

My partner really liked my devised process of generation, collection, and collation that would result in a final exhibition. We discussed that at the core of my proposal was the idea of connection, exploring how this connection could be fostered between people living with Type 1 Diabetes as well as wider society. It was suggested that to inspire these connections individuals could be given the opportunity to deliver their postcards themselves to the exhibition space. Not only would this provide people with the opportunity to meet each other in person but it would also humanise the issue and disease.

One issue I did face when discussing my proposal with my partner and tutor was that I was still struggling to articulate by issue and devised response in a way that it could be understood clearly. It was suggested that I attempt to narrow in on my target audience and issue so that my response is more targeted and specific. I’ve put a lot of work into trying to better refine my proposition so that my issue and generative practice are clearly linked and explained.

 

Revised Proposition:

When living with Type 1 Diabetes there is a ‘constant and tiring mental dialogue of trying to balance the un-balanceable, trying to do right not wrong and with you, the only listener.’ It is this constant cognitive battle that sufferers struggle to voice, particularly to those not living with the disease.

TOP (Type One Peers) is a generative practice and service project that aims to bring people living with Type 1 Diabetes together to talk about their chronic disease, not just in medical terms but in a social, every-day manner. The project seeks to engage sufferers in a process that will see them first visualise their individual cognitive struggles before coming together alongside other young people living with Type 1 Diabetes to discuss, support and share these struggles and stories.

A TOT package is mailed out to all registered NDSS (National Diabetes Service Scheme) individuals, containing a collection of A5 postcards. Each card requires a different response from the individual and are specifically tailored to engage and explore the mental and physical struggle of living with Type 1 Diabetes. The proposed draft postcards with their tasks and aims are shown below:

Card 1

Card 2

Card 3

Card 4

Card 5

Depending on location and context, participants are then invited to either send back their completed postcards or bring them in themselves to a local workshop that will engage sufferers in curating and putting together an exhibition. The exhibition will ultimately be a  visualisation and exploration of Type 1 Diabetes that goes beyond stereotypes and the physical aspects of the disease but rather focusses on the mental and cognitive struggles that are so hard to voice and share for those living with Type 1 Diabetes.

Due to time, economic and distance boundaries there will also be an online exhibition that allows those who cannot physically be at the workshop and space to still engage and connect with fellow sufferers. By bringing together individuals throughout this experience it is hoped that it will empower them to share their stories and provide supporting for one another in a way that they may currently struggle to do.

The exhibition also provides an opportunity for those living with the disease to communicate and begin a discussion with the general public about how the cognitive demands of this disease can be better managed and understood. It is hope through this process that sufferers learn to express their cognitive battles with the disease more freely not only with their peers but others in their life. It’s also hoped that this struggle is recognised by the general public so that other support systems and networks arise.

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Type 1 Diabetes: Brainstorming for a Design Response

Post 9 by Lucy Allen

The word brainstorming as so many immediate connotations, not all of these very exciting. When it comes to understanding a topic and defining an issue however the process of brainstorming is vital. We explored a number of brainstorming activities that provided us with the depth and material to then define a design response.

One of the initial brainstorming tasks we undertook in class asked us to identify some issues in regards to our topic and then break these down by defining:

WHO Does the problem effect?
WHAT are the boundaries of the problem?
WHEN does the problem occur? When does it need to be fixed?
WHERE does it occur?
WHY does it occur?

An example of this method in practice

I found this activity particularly helpful in forcing me to breakdown an issue so that myself and others could understand it fully. This activity also provided a structure for me to write my issue statement from.

It was also mentioned that when narrowing in on an issue a really fantastic way of exploring and understanding it is to continuously ask why, just like a child would. I absolutely LOVED this exercise and it allowed me to really understand WHY this issue existed and work out where within the system change and response was needed.

An extract taken from asking why

 

When it came to brainstorming as a group, attempting to map potential responses to my specific issue was quite a struggle for other members of my group. I think this was due to the fact that my issue is so specific and knowledge dependant. Despite this barrier we were able to come up with a few really promising emergent responses to my issue. One of the benefits of doing this particular task as a group meant that I got to hear the different opinions and responses of my group members, brainstorming responses I may otherwise have never ventured towards. It was a shame that this particular brainstorming took place at the end of class as by this time everyone was quite tired and lacking brain power!

Group Brainstorm

I received some really valuable feedback in response to our groups map. It was suggested that I think about the values of understanding, connection and acceptance in their individual forms, particularly when deciding on which emergent response to pursue. From this initial group brainstorm I was inspired me to continue developing and brainstorming responses to the issue, developing the map and honing in on a particular response.

Building upon our group brainstorming

I did find throughout this process that it was hard to generate lots of ideas. Despite this I found a few responses that I’m excited to pursue, you can read all about this in my recent blog post A Design Response for Type 1 Diabetes.

A Design Response for Type 1 Diabetes

 Post 8 by Lucy Allen

The ability to brainstorm and discuss in a collaborative group throughout this process has been so beneficial in my own discoveries but also in broadening my understanding in different areas of ‘Obesity and Healthy living’ through the work of other group members.

Identifying possible issues to respond to required me to draw upon my many weeks of research and findings to extract the fundamental issues at play in the realm of Type 1 Diabetes.

Identified Issues

• There is wide-spread confusion and lack of education as to the difference between Type 1 and Type 2 Diabetes
• People living with Type 1 Diabetes often feel misunderstood and that there is a lack of peer and personal support when it comes to living with the disease
• Australia has a history of attempted and failed government strategies when it comes to Type 1 Diabetes. There is currently no government strategy in place to further educate, inform and prevent Type 1 and Type 2 Diabetes
• There is a lack of empathetic connection and understanding within the interconnected stakeholders in regards to Type 1 Diabetes
• Due to a lack of understanding about Type 1 Diabetes there is a stigma and stereotype associated with Type 1 Diabetes that is mostly incorrect and misunderstood

 Using the framework of who, what, when, where and why I was able to refine these issues into a more specific issue statement from which I could begin to brainstorm potential emergent responses.

Refined Issue Statement: 

“People living with Type 1 Diabetes feel a lack of understanding, connection and acceptance in current Australian society”

By refining and defining my issue statement I was able to begin brainstorming potential emergent responses to this issue as explored in INSERT LINK. From this group brainstorming session I discovered that the most obvious response to my issue would be that of a service. I found however that the few visualisation practice and generative system ideas we brainstormed were a lot more exciting to me than that of a service design. I think creating a response that incorporates some aspect of visualisation practice and a generative system has the potential to result in a much more innovative and impactful outcome to this issue.

Proposal

My issue tackles three important but different feelings currently experience by those living with Type 1 Diabetes; understanding, connection and acceptance. I propose the design of a exhibition that would be curated through a generative system and result in a data visualisation. Throughout this process there would be the opportunity to connect people living with Type 1 Diabetes, educate society on the disease and raise awareness of Type 1 Diabetes.

I propose the development of a set of postcards, sent to people living with Type 1 Diabetes nationally. Each postcard would require a different response from these individuals, some possible responses are brainstormed below:

These postcards would then be collected and curated into a public exhibition that not only acts as a visual representation of what it is like to live with this disease but also a data visualisation of living with Type 1 Diabetes. This exhibition would bring together sufferers, uniting them through the process as well as opening up a discussion about Type 1 Diabetes, educating and raising awareness about the disease. I would hope through this process and exhibition that it would attract media attention and bring this issue to the attention of government bodies, enabling a discussion to be started at a higher level and action to be taken and carried through by the Australian Government.

 

Type 1 Diabetes: Issue Mapping

Post 7 by Lucy Allen

The first mapping exercise we undertook as a group was looking at and categorising different word associations to the topic ‘Obesity and Healthy living’. Working collaboratively we collected a mammoth range of words that covered the entire topic. It was so fascinating to see what words we all wrote and which came to mind in relation to our individual topics we’ve been exploring, enabled us to come up with a diverse range of words.

The many words we came up with as a group:

After writing the antonym of each word on the back, we were then given the opportunity to ready through the words of other groups to choose five words that we felt related strongly to our personal topics.

The chosen words that I felt related most strongly to my area of interest:

 

 

Then bringing out individual words together as a group it was interesting to see that we all had quite a few in common such as ‘motivation’ and ‘support’. As a group we then voted again to draw out the key words from which we could all relate too.

The group’s collection of key words:

 

The final collection of words that we voted on as a group: 

The next section of the mapping task was my favourite. We were asked to collect the words and make maps based on what type of word it was and what it evoked. The categories we worked with were; emotive, disruptive and factual. It was this section of the mapping that really saw us working as a team and questioning each others decisions. If someone didn’t agree with the categorisation of  a certain word we would have a discussion as a group to decide. Everyone’s opinions were respected and we had some fantastic discussions about word associations and meaning within this field.

Categorising word by Its impact and type:

We next undertook an exercise in ranking our key words on a spectrum of positive to negative. Again the group had differing ideas of where these words should be placed on a spectrum however we were able to discuss this and make an informed decisions. I noticed that our negative vs. positive associations were quite influenced by our individual focus areas. For example, for me and my focus on Type 1 Diabetes, the word ‘drugs’ ranked quite positively on the spectrum as without drugs, Type 1 Diabetics couldn’t survive. In opposition to this, a group member who’s area of focus is sugar consumption, the word ‘drug’ is associated with sugar as a drug and ranked quite negatively on the spectrum. When it came to these conflicts of interest we were able to compromise by thinking about the topic holistically and from a broad sense.

Working on this word mapping with my group I came to understand something that is really vital to my own research and work based on the varied responses and understanding of words from my group members. I realised that even when it comes to medical terms and disease names there are still areas of opinion and perspective. For example, smoking is an easy to define, specific word however people have individual associations with that word and their own opinion as to whether it is negative or positive. This is important to keep in mind when analysing and judging people’s opinions and understanding of Type 1 Diabetes.

Looking at the issue mapping my group completed in class the week I was away it was interesting to explore the process they’d undertaken when mapping the actors. From my understanding the started by brainstorming all the contravercies within the topic of Obesity and Healthy Living before choosing ‘steroids’ as a topic to persue. They then mapped out all actors in this system under the subheadings of value alignment, hierarchies, politics, associations, capacities, issues and challenges

Group Brainstorm of Steroids:

Group Actor Map of Steroids:

 

I’ve noticed that all members of my group have worked in quite unique and specific areas of Obesity and Healthy Living, meaning that the work and mapping we do in class needs to have a broad approach. Not only does this mean we’re all exploring other areas but it gives us a chance to work and map broadly and then take our learnings and apply it to our own more specific topics. It gives me new perspectives to look at my issue from as well as an ever-expanding knowledge of different areas such as steroid use and the impact this has with my own topic of Type 1 Diabetes.

Taking the process and mapping work of my group, my learning’s from this weeks readings as well as my own knowledge,  I sought to create my own actor map on Type 1 Diabetes. For my issue mapping I wanted to focus on the issue of knowledge and people’s lack of understanding of Type 1 Diabetes. From here I could map out this issue space by looking at key actors to form a greater understanding of the issues surrounding Type 1 Diabetes itself. I identified the key actors as being Government, Sufferers, Health Professionals and Wider Society.

Individual Actor Maps:

After creating these individual actor maps I would ideally collate them into a larger issue map to begin drawing relationships and the cause and effect between different actors and their differing values, actions and abilities.

I can however already see in these maps possibilities for action to greater change, particularly in the areas of actor’s values and connections. I think that if all actors could exercise greater empathy and strengthen their connections to other actors there would be a better communication of information, education as well as understanding around the subject of Type 1 Diabetes. As the issue is so complex and involves such a range of actors, it would involve taking action within multiple actors to have a long-lasting impact. In saying this, most disconnections within the issue can be traced back to the Government’s lack of strategy and commitment to the awareness, treatment and education of Type 1 Diabetes. This is a potential point of intervention when thinking about an emergent practice in response to the issue.

 

 

Reference List

Rogers. R, Sanchez-Querub. N, Kil. A, C. 2015, ‘Issue Mapping for an Aeging Europe’,  Amsterdam University Press B.V., Amsterdam 

Digital Methods Initiative, C. 2016, ‘Ageing Places: Digital Methodologies for Mapping the Issue of an Ageing Europe’, University of Amsterdam, 2015

Schultz. T, C. 2015, ‘Cognitive Redirective Mapping: Designing Futures That Challenge Anthropocentrism Design and It’s Wild Cards’, Design Ecologies, No. 6

Type 1 Diabetes: A Twitter Data Scrape

 

Post 6 by Lucy Allen

Twitter has been defined as a sort of ‘microblogging’ in allowing Its users to post short, 140 character posts on the ‘twitter-sphere’. The limited word count often means that witty and somewhat blunt opinions and statements are made and shared with followers and available to a worldwide community.

The appeal of Twitter is not only the freedom of opinion and expression but the ability to read content quickly and engage with users world-wide. An array of accounts manned by different companies, individuals and businesses means that live events are responded to and can be tracked in real time.

(Buzzfeed, 2014)

Due to the array of users and audience members there are many different reasons and opinions expressed in ‘tweets’. The different identities and values of the different users are mapped out below:

Mapping the values and identity of different Twitter users (Lucy Allen, 2016)

The tone of voice used in a Tweet very much comes down to the user themselves and The type of user they are. For example, a business company’s tweet about it’s recent successes would most likely have a much more formal and matter-of-fact tone of voice compared to that of a young adult on the topic of a music festival. In saying this companies and even governments/politicians sometimes utilise a more informal and humorous tone of voice over social media platforms to attract a younger and more varied audience.

(Lindsey Graham, 2013)

 

 

With over 313 monthly million users and 500 millions tweets per-day, Twitter is a treasure trove of information and opinion. The development of data scraping tools such as the ‘Advanced Search’ Twitter function allows anyone to discover the data and information across the enormous platform. This allows people to examine and explore this data, pulling out interesting findings and insights.  I undertook my own data scraping task to investigate the presence of discussions about Type 1 Diabetes, excited see what I could deduce from my process and findings.

Process 

My process for data scraping utilised the Twitter Advanced search function as an add-on of Google Sheets. Whilst I began with this special function I ended up using the Advanced Search on the Twitter to enable more thorough data scrapes.

Process map (Lucy Allen, 2016)

Results

My first search was very broad and included all the related words I had brainstorm in regards to Type 1 Diabetes. This broad search resulted in 170 pages of data and over 10, 000 results. From a brief glance at the results I did immediately recognised that there was a real mix of personal posts from people living with the disease, mixed in with news reports and research findings. I realised however that I needed to refine my data scrape if I was going to be able to properly analyse the data.

Twitter Advanced Search 1

My next search involved searching fewer words but still keeping the terms broad by searching ‘Type One Diabetes’, ‘Type 1 Diabetes’ as well as those terms as hashtags. I got 450 results back, a much more realistic set of data however still to big to analyse and draw insight from.

Twitter Advanced Search 2

Using the same search terms I wanted to narrow the date field of the data, limiting it to the past 30 days. I discovered that the Twitter Advanced Search add-on for Google sheets didn’t enable a date-based advances search. Instead I ran the advanced search on the Twitter website which did allow me to refine my search by date and time frame. The results weren’t as neatly collated as that of using the search in conjunction with Google Sheets however it did enable me to see entire posts, even those that included images and videos. I was able to spend time looking into the search results and made some insightful discoveries.

Search 3:  Tallying the types of Twitter posts on Type 1 Diabetes

I went through the collection of posts and started to tally what type of posts they were. I wasn’t surprised to see that most posts on the topic of Type 1 Diabetes were personal ones that saw people expressing day-to-day struggles of living with the disease. There were certainly fewer news and research based posts than I was expecting and far too many posts about Nick Jonas, a celebrity living with Type 1 Diabetes (I had to give him his own category…). There were of course a few ‘really?!’ tweets where people obviously had no idea about the disease as seen in the example below.

Is Type One Diabetes Real… (Twitter, 2016)

 

Probably the most incredible discovery I made throughout my data scrape was the discovery of so many support networks and platforms for people living with Type 1 Diabetes to connect with. I was completely blown away and can’t wait to look into these further and discover the digital community that exists.

After I’d completed this area of investigation I was interested in looking at the results I got when searching Type 1 Diabetes imagery on Twitter, again with the Advanced search tool. After creating my own image archive last week I was really intrigued to see what types of images would come up. I found that most images were in regards to personal achievements of those living with Type 1 Diabetes or fundraising or campaigning. I noticed again and as discussed in my recent blog post ‘Type 1 Diabetes: Stakeholders and Visual Representation’ that there was a lack of images that can completely sum up what it is like living with Type 1 Diabetes.

Twitter Advanced Image Search for Type 1 Diabetes 1 (Twitter, 2016)

Twitter Advanced Image Search for Type 1 Diabetes 2 (Twitter, 2016)

Twitter Advanced Image Search for Type 1 Diabetes 3 (Twitter, 2016)

Key findings

1.  People are using social media to speak out about what It’s like living with Type 1 Diabetes
2.  Social media platforms such as Twitter are acting as a digital support network for people living with diseases as well as other issues and concerns
3.  There are still lots of people who are completely unaware of Type 1 Diabetes or lack any proper understanding of the disease
4.  Most ‘tweets’ about Type 1 Diabetes came from Westernised countires
5.  People living with Type 1 Diabetes are becoming increasingly frustrated with a lack of understanding and stereotypes present in society

Reflection

In reflection I believe that there may have been more creative potential if I searched some less obvious terms such as ‘insulin pump’ or ‘Autoimmune disease’ etc as part of my data scrape. I also would have liked to have spent more time analysing and looking into the image archives of Twitter however this came as an afterthought to my initial process. I noticed when going back over my search results you can also generate positive or negative responses. It’d be interesting to gather and compare this data, looking at the different tone-of-voice these opposing posts take.

I would also love to have the skill and time to create a Twitter Bot as Chris Gaul talked about in his lecture. It would be fascinating to interact with people posting on this topic and even pose questions to them or provide them with knowledge on Type 1 Diabetes. These bots have so much potential in engaging with the issue through a tweet and therefor engaging with users and people from all walks of life.

Like with all data there is so much potential in how it can be visualised and broken down. A fantastic pre-existing example of this is the #NoPricks campaign image which visualises the average amounts of injections a person living with Type 1 Diabetes has in a month.

#NOPRICKS Campaign Poster (Nopricks, 2016)

With the data and content I’ve collected It would be really great to visualise the breakdown of the types of tweets people post about Type 1 Diabetes as I think it says a lot about social media and sharing and support platform. It’d also be interesting to delve into this further by breaking down the types of personal posts and analysing the reasoning behind why someone may want to post this and the response/support each post gets. This then got me thinking about the possibility of mapping the online support network of sufferers living with Type 1 Diabetes to see the great extent of this network. An example of what this type of data visualisation could look like is seen below:

(Lucy Allen, 2016)

References

Gaul. C, 2016, ‘Twitter Bots’, Lecture, accessed 1st of September 2016, <https://online.uts.edu.au/bbcswebdav/pid-1384637-dt-content-rid-8098732_1/courses/87831/Week4Lecture_ChrisGaul_TwitterBots.pdf&gt;

Gil, P. 2016, ‘What Exactly is Twitter’, About Tech, accessed 1st of September 2016, <http://netforbeginners.about.com/od/internet101/f/What-Exactly-Is-Twitter.htm&gt;

Heugel. A, 2016, ‘Lindsey Graham Tweet’, 30 Hilarious Political Tweets, accessed 1st of September 2016, <http://twentytwowords.com/hilarious-political-tweets-that-will-make-the-internet-great-again/>

Muhammad M. U., Muhammad. I , Hassan. S, ‘Understanding Types of Users on Twitter’, Lahore University of Management Sciences, Lahore, Pakistan1 Qatar Computing Research Institute, accessed 1st of September 2016, <hsajjad@qf.org.qahttp://www.qcri.org.qa/app/media/4858>

NoPricks, 2016, ‘Campaign Image’, accessed 2nd of September 2016, <http://www.prweb.com/releases/2014/08/prweb12069199.htm&gt;

Sayce, D. 2016, ’10 Billion Tweets‘, David Sayce, viewed September 1st 2016, <http://www.dsayce.com/social-media/10-billions-tweets/&gt;

Twitter Advanced Search, Twitter, accessed 3rd of August, <https://twitter.com/search-advanced?lang=en&gt;

The Huffington Post, 2016, ‘Best Tweets’, accessed 4th of September 2016, <http://www.huffingtonpost.com/news/best-tweets/>

Tholepin. C, 2016, ‘Is Type One Diabetes Real’, Twitter, accessed 2nd of September 2016

 

Type 1 Diabetes: Stakeholders & Visual Representation

Post 3 by Lucy Allen

When understanding and discovering any complex system the system can only be appreciated when attempting to map the stakeholders involved. It is only then that you can see the intricate web of players, their values and relationships and how they make up a larger system and influence each other. Stakeholder mapping alongside a collection of visual research has allowed me to appreciate these systems, their intricacies and portrayals through a visual format apposed to the written texts I have previously discovered.

Stakeholder Mapping

When asked to produce a stakeholder map in class on the topic of Obesity and Healthy Living it was quite daunting task. The system and stakeholders form such a complex web and we worried that we wouldn’t be able to cover every actor and relationship within the time and space constraints.In the end we were very happy with the map we produced, whilst not clear it is well thought out and conveys a basic overview of the stakeholder involved in the issue.

In-class Stakeholder Relationship Map for ‘Obesity & Healthy Living’

We were later asked to map stakeholders based on their values and relationships. This provided much more challenging as we really had to put ourselves in the shoes of each stakeholder and discuss their position in the grand scheme of things.

In-class Stakeholder Value Map for ‘Obesity and Healthy Living’

The two stakeholder maps we created in class was based on the overarching issue of ‘Obesity and Healthy Living’. As my research has led me into the quite specific topic of Type 1 Diabetes I wanted to take these two maps on relationships and values to create a more specific map of the topic, breaking this down into human and non-human players.

Stakeholder relationships and values for Type 1 Diabetes

Image Bank

When creating an image bank to reflect all that I have been researching and discussing I have really tried to find images that either depict some reality of living with Diabetes or allow me to challenge societal assumptions. Many of the images I’ve found cleverly reflect the treatment of Diabetes through the use of needles and other harsh means. It’s very easy to hide the treatment of Diabetes so I think that imagery and artworks are a great way for people to express their frustration and the more hidden aspects of the disease.

Despite the freedom of visuals to communicate I did find it difficulat to find any images that conveyed the overall experiene of what it is like to live with Type 1 Diabetes. I put this down to the silent nature of the disease in that people living with it look perfectly healthy and normal. Unlike Type 1, Type 2 is a bit easier to stereotype as seen in image 4, where those suffering are predominantly overweight. Due to this, I struggled to find imagery that could really reflect the experience of living with Type 1 Diabetes and not just a treatment or small aspect of it.

I feel these images reflect many of the issues I’ve previously talked about around the subject of Type 1 Diabetes however do so in a more lighthearted way than my textual sources have. It is amazing what can be communicated through an image and I feel a lot is said through the particular images I’ve chosen.

 

 

 

Image 1: Swiss-abetic Pen & Ink by Birdwing Press

 

This illustration is a unique way of looking at the various forms of treatment needed by those living with Type 1 Diabetes and highlighting just how much is needed.

Image 2: Jellybeans In a Jar by J. Tyler

This image represents the many assumptions made in regards to Type 1 Diabetes and sugar. Whilst sugar has a direct impact on blood sugar levels and eating it can make managing the disease harder, sugar can also save the life of someone living with Type 1 Diabetes.

 

Image 3: Complication of Diabetes Mellitus Type 1 from A Fair Go

This image is an example of the long-term complications poor Diabetes control can have. Few people realise the extend of these complications, amputation being just one.

 

Image 4: Diabetes Sucks by Noah Health 

This image reflects the stereotype of what most people associate with ‘Diabetes’. It can be hard for many people living with Diabetes to dispose of this generalisation of the disease, many people are taken-a-back when they realise that not all people with Diabetes are overweight and eat junk food 24/7.

Image 5: Newcastle Walk to Cure Diabetes by R Osland

This photo is of the Newcastle 2015 ‘Walk to Cure Diabetes’, an annual fundraiser run by JDRF (Juvenile Diabetes Research Foundation) to raise money to fund further research into funding a cure for the disease.

 

Image 6: Icecream Cones by The Taable

This image from The Taable reflects the assumption that Diabetics must go without. That eating sugar was detrimental and is what cause our Diabetes. This view was something I came across countless times growing up until I learnt to stand up for myself and explain to people that I could in-fact eat that ice-cream and could in-fact eat that cake.

 

Image 7: Diabetes Art Day by M. Mokate

This untitled artwork by Nora Mokate depicts a woman handcuffed by the tubing of her insulin pump. This image is commenting on how whilst people living with Diabetes try their best to control the disease and live normal lives often it seemingly takes control, leaving you at the mercy of medicine and attempting control.

 

Image 8: Campaign Image by #NoPricks

This raw image is part of the #NOPRICKS campaign that seeks to eliminate needles for Diabetics through delivering insulin through a patch on the skin. The image depicts just one month’s worth of needles and is a reality for many people worldwide.

 

Image 9: Diabetic Fingertips found on Google Image Search

This image taken from a blog post by user DeviantArt depicts the worn fingertips of those living with Type 1 Diabetes due to testing blood sugar levels multiple times a day. This image is an example of how Diabetes has only a few small visible impacts but has many hidden ones.

Image 10: Diabetic Thirst by E. Loli

This image is titled ‘Diabetic Thirst’ and is a collage by Eugenia Loli. The work reflects the debilitating thirst felt by those living with Type 1 Diabetes when their blood sugar levels are high.

 

Reference List

A Fair Go, 2014, Diabetes Mellitus Type 1 – Complications, viewed 20th of August <2016, http://afairgo.net/diabetes-mellitus-type-one-complications/>

Birdwing Press, 2016, Etsy, viewed 19th of August 2016, <https://www.etsy.com/listing/96275838/swiss-abetic-pen-ink-diabetes?ref=cat_gallery_22&ga_search_query=Diabetes&ga_order=most_relevant&ga_view_type=gallery&ga_ship_to=US&ga_search_type=all&gt;

Deviant Art, Diabetic Fingertips, Google Images, viewed 20th of August 2016, <http://www.deviantart.com/deviation/91454971/&gt;

Loli, E., 2015, Diabetic Thirst, Tictail, viewed 20th of August 2016, <http://eugenialoli.tictail.com/product/diabetic-thirst&gt;

Mokate, M., 2014, Diabetes Art Day, Diabetes Daily, viewed August 20th 2016, <https://www.diabetesdaily.com/blog/2014/02/diabetes-art-day-2014/&gt;

Noah Health, 2016, Diabetes Sucks, Noah Health, viewed 20th of August 2016, <http://www.noahhealth.org/five-most-common-food-myths-associated-with-diabetes/#soc&gt;

NoPricks, 2014, Campaign Image, viewed 19th of August 2016, <http://www.nopricks.com/&gt;

Osland, R. 2014, ‘Walkers at the Newcastle Walk to Cure Diabetes’, Newcastle Herald, viewed 18th of August 2016, <http://www.theherald.com.au/story/2618848/thousands-walk-newcastle-for-diabetes/&gt;

The Taable, 2016, Icecream Cones, Pinterest, viewed 18th of August 2016, <thetaable.com>

Tyler, J., 2015, Jelly Beans in a Jar, Reference, viewed 19th of August 2016, <https://www.reference.com/math/calculate-jelly-beans-jar-6fd1770243a80db&gt;

China’s Smog: An Interview and Probe

Post 5 by Lucy Allen

For someone living with Type 1 Diabetes it’s really easy to fall into the trap of thinking that everyone knows and understands the disease and if not, that they should. This somewhat arrogant view was challenged when undertaking an interview and probing activity as part of design-led ethnography.

I devised four probing questions that I hoped would open up discussion and allow my interviewee to really articulate their assumptions, knowledge and understanding of Type 1 and Type 2 Diabetes. My hope for these questions was that I could develop a better understanding of how people view those living with Type 1 Diabetes and the assumptions they make. 

My probing questions:

1. What comes to mind when I say Diabetes?
2. Do you have any experience with Diabetes? Say with family, friends, peers?
3. What type of body do you associate with Diabetes?
4. If you were diagnosed with Diabetes today how do you think your life would change?

I wasn’t however prepared for if my partner had no previous experience or knowledge of Type 1. Quite naively it hadn’t even crossed my mind that this was a possibly, perhaps because to me it is so normal and day-to-day. Once realising my questions were too tricky for someone that knows nothing about the disease I began trying to adapt my questions to make them a little broader whilst also explaining a bit about Type 1 to my partner. I realised after my partner very apologetically couldn’t answer my questions that my interview would have to take a different path. 

With some help from my tutor I was able to delve into my partners own experience with health and wellbeing, particularly in relation to his birth country, China. I asked him questions about Chinese culture and the health of people over there and he informed me of the smog in China and how this has a enormous impact on the health and wellbeing of the Chinese. The most interesting thing I learnt throughout the process was that the smog in China is so thick that at the end of a day when people take their masks off, the filters have black sludge on them. I found it hard to imagine when my partner told me this, we are so used to clean fresh air here in Australia and it really made me appreciate this.

It was a really eye-opening experience to carry out an interview that was so different to the one I’d played out in my head. It was a fantastic experience for me learning to think on my feet and ask probing questions. What eventuated was me not so much learning about the area I was focused on but being engaged and enlightened in a much more personal and interesting topic to my partner that in turn informed and engaged me.

Some interesting points I took away from my interview are

• There is a bigger focus in China on Cancer as a leading health issue apposed to Diabetes
• Air Quality is seen as a big threat to the health of the Chinese
• The ‘smog’ effects lungs, teeth, skin and general ability to exercise and be outside
• Government has attempted to fix to smog but it as seen as a helpless situation, very few people have hope it will ever change
• There is a focus on physical health apposed to invisible e.g. Amputated limbs vs. mental health disease

When deciding on a probing activity for my partner to undertake it was tempting at first to focus on increasing his knowledge of Type 1 Diabetes. In the end however I appreciated that my interview had taken use down a different path and that this was now an opportunity for me to learn more about China and their healh and wellbeing. I started out with quite complex and time-consuming probing tasks however was advised to keep these simple so as not to make the task feel like a chore.

Smog in Beijing (Huffington Post, 2015)

My probing exercise:

1. Undertake 3 x 10minute research sessions on the health of China. Record any interesting points and health terms
2. Write out how the life of Chinese people would be different if the smog disappeared

The outcomes I received from this activity were really fantastic. It was amazing how when somebody can relate to an issue or is passionate about it how it inspires them to throw themselves into a task. Being able to access Chinese news and website my partner was then able to translate many of the statistics and research for me, invaluable information. It was also really great to see health terms highlighted clearly, this really informed the associative word task we undertook the following week.

An great extract from my partners research. Translated Chinese health statistics with highlighted health terms

When reading my partners response to what would change if the smog in China didn’t exist I suddenly realised how interlinked the smog and health are. As my partner pointed out that alongside the health risks, the smog has additional physical and emotional effect on people. It stops the Chinese from spending time outside and exercising as well as blocking the sun meaning most days and grey and dull. Being informed of this issue that is so foreign to us was really incredible and I feel lucky to have learnt so much from my partner and his access to relevant information. 

Chinese News Source my partner used as part of my probe activity

Looking back on the interview process some part of me wishes I had been better prepared with broader probing questions however at the same time I am so happy with how the process evolved and the path it took. I have learnt so much and been engaged in a totally new realm of health that I wouldn’t have been otherwise. In saying that I would have liked to do some more unique and creative probing exercises. Due to the nature of the topic the interview led us to it was hard to come up with fun and original tasks to give to my partner. In this particular circumstance I do think that the probing exercises turned out well and really benefited both my partner and I.

Reference List

English, A.J, 2015, “Inside Story – China’s Pollution Dilemma”, Youtube, viewed 23rd of August 2016, <https://www.youtube.com/watch?v=pYzedoKTx3Q&gt;

Hunt, K., Lu, S., “Smog in China Closes Schools and Constructions Site, Cuts Traffic in Beijing”, CNN, viewed 22nd of August 2016, <http://edition.cnn.com/2015/12/07/asia/china-beijing-pollution-red-alert/&gt;

NTDonChina, 2013, Top Health Expert Says China’s Smog “Scarier than SARS”, Youtube, viewed 24th of August 2016, <https://www.youtube.com/watch?v=KsCfzAncWLk&gt;

Needle Free Blood Glucose Testing

Post 4 by Lucy Allen

In the recent blog post Truths of Type 1 Diabetes I explored the emotional and social impact living with Type 1 Diabetes and a lack of support can have. Tackling these social issues requires a long-term intervention and strategies to ensure a better support network and management for diabetics.  There are however many exciting and fast-paced innovations in the field of Type 1 Diabetes that make living with the disease a littler easier for people like myself.

A common issue faced by people living with Type 1 Diabetes is the large amount of needles used day to day. Between injections, blood glucose tests and site insertions Diabetics use over 3000 needles a year. There are options these days in regards to injecting insulin in the form of an insulin pump, decreasing 5 – 10 injections a day to just one needle insertion every three days however testing your blood glucose level (BGL) is imperative in the proper management of Type 1 Diabetes and is done so by pricking your finger with a needle to draw blood for reading by a metre multiple times a day.

Testing your BGL  (G. Matej, 2015)

Just recently Abbott have released the first needle-free BGL monitoring system called The FreeStyle Libre Flash. This system works by inserting a sensor into the upper arm that can be scanned using the monitor to receive not only a BGL but also detecting patterns and trends. This breakthrough technology is the first of it’s kind in offering needle free testing, providing ease of use and making living with Type 1 Diabetes just a little bit easier. Abbot have very effectively engaged with a major issue for those living with Type 1 that is in no way a cure but rather explores a major detriment of the disease and developed the appropriate technology in response. Whilst this technology doesn’t completely obliterate the use of needles as the sensors insertion still requires a needle, it drastically decreases the use of them and enables easier and more user-friendly BGL testing.

The FreeStyle Libre System (Abbott, 2016)

Whilst it’s clear Abbott have very successfully engaged and provided a solution to this issue there are still social barriers the deter people such as myself from using this new system. The system is usable whilst swimming, showering, exercising and in most day to day situations. Despite so many benefits, for me the idea of having another thing attached to me in addition to my insulin pump is a big turn off. With an insulin pump, the site and pump can sit comfortable and discreetly under my clothing however with the Libre it is inserted on the upper arm in clear view. For someone such as myself who lives in the sun and at the beach, the thought of the sensor being so blatantly obvious really deters me as it screams ‘there’s something wrong with me’. For me I would rather keep using needles to prick myself, draw blood and test my BGL to avoid this more intrusive technology.

It’s clear that whilst Abbott have provided an emergent solution to an ongoing issue there are still further areas of engagement that need to tackle the more social aspects surrounding the Libre. This project is however a fantastic example of all the exciting and emergent outcomes that are coming to fruition as technology improves and issues surrounding health and obesity are explored. My hope is that we can continue to develop, test and respond to these innovations in a way that allows people living with Type 1 to feel more ‘normal’ as some might say.

References

Abbott, ‘Free Style Libre’, accessed 20th of August 2016, < http://www.freestylelibre.com.au/&gt;

G, Matej., 2016, ‘What is Normal Blood Sugar Level’, accessed 23rd of August 2016, <http://healthiack.com/health/what-is-normal-blood-sugar-level&gt;

Truths About Type 1 Diabetes

Post 2 by Lucy Allen

Inspired by the research that led me into the world of Diabetes and what constitutes ‘healthy’, I was driven to probe further into these areas. I came across ‘The National Diabetes Strategy and Action Plan’, published in 2013 previous to the Federal Election and written by a number of experts in the field of Health and Diabetes. All authors of the article belong to a credible organisations such as ‘The Baker IDI Heart and Diabetes Institute’ or hold a prominent position such as President of the Australian Diabetes Society, making this publication extremely credible. The purpose of this article is to provide the incoming Australian Government with a ‘clear framework for a new national strategy for diabetes and a five year action plan’. Whilst all authors have been published in medical journals previously this is the first article of its kind written by this particular collection of experts.

This factual, evidence-based article outlines the previous actions taken by The Australian Government, both successful and non-successful. I was shocked by the number of failed attempts and false promises made by the Australian Government in relation to Diabetes; our nation has never seen a successful National Diabetes strategy and action plan.

.

Statistics on Australia’s past responses in regards to Type 1 Diabetes. (Diabetes Australia, 2013)

 

 

NSW’s lack of progress is put to shame in contrast to Victoria’s ‘Life! Program’ that helps prevent Diabetes, Heart attacks and Stroke. It has seen in it’s time a phenomenal 30% reduction in risk. If Victoria can have such success in implementing such a strategy, why can’t we expand this nationally? It is fantastic to see this article not only outline the issues present but also propose solutions. Five overarching goals are detailed, the most promising of which being to ‘Strengthen prevention, care and cure through knowledge and evidence’, something I believe is at the core of allowing Diabetes and those living with Type 1 Diabetes to be better understood.

There is little biased present in this article with all claims backed by research and statistics from previous and current studies. Opinion is present in statements such as, ‘The seriousness of Diabetes is often underestimated. There is no such thing as “mild” Diabetes’. Statements such as these whilst opinion based are still important, revealing the prejudices and misunderstanding throughout society. This article gives me hope that after all the failed attempts made by the Australian Government that there are still people out there who push for this epidemic and disease to be recognised and understood.

Now comes the really honest part…

Critically analysing articles about a disease I myself live with day in and day out I guess it was inevitable that I’d end up critically analysing my own views and having to be honest with myself. A research paper published by the Stento Diabetes Centre in Denmark sought to ‘explore the functions of peer support from the perspectives of adults with Type 1 Diabetes’. The study was undertaken and recorder by three experts in the field of Diabetes from the institute, resulting in a soundly researched, quantified and revolutionary study. As one of the first studies to explore patient perspectives on the function of peer support for people living with Type 1 Diabetes, it’s the first time I have come across a discussion of many of the issues and experiences talked about in this paper.

The article is extremely factual whilst also referencing the responses of participants, a diverse group of individual all living with Type 1 Diabetes. As I read this article I became more and more aware of just how much of what was being said I could empathise with. Statements made by individuals articulate the many internal struggles people living with disease have, from social exclusion to misunderstanding, all ringing true. A statement made by a participant about having to ‘make your own experiments on how to live well with Diabetes’ was particularly thought provoking. This is something I really do struggle with, the constant and tiring mental dialogue of trying to balance the unbalanceable, trying to do right not wrong and with you, the only listener.

“If there was more recognition in our society, that there is also a lot going on in your head when you get the disease, it would be a lot easier to talk about. I mean the majority of people seem to be of the opinion that as long as you get your injection you’ll be fine…but it’s not quite like that” – Anonymous Participant

This study concludes the importance for Type 1 Diabetics to be able to talk about their chronic disease, not in a medical way but in a social, every-day manner. Diabetes has its own language and to be able to communicate with other Diabetics is a relief and comfort. This article has changed the way I think by enlightening me to the experiences of other Diabetics and reporting on the findings of this important study.

I don’t write this for you to feel sorry for me or to make you feel as if you need to suddenly research all there is to know about Diabetes. I write this because it is now so much more than just a research and blog task. I know this post is very much over the word limit but it is providing me with the drive and passion to know more, to research further, to advocate for change and to get to know myself and my relationship with Diabetes a little better. It’s daunting but I’m jumping in feet first.

 

 

Reference List

Diabetes Australia, 2013, ‘A National Diabetes Strategy and Action Plan’, viewed 11th of August 2016, <http://static.diabetesaustralia.com.au/s/fileassets/diabetes-australia/e549bdb8-of80-46f8-b827-35cb4f1bcd2.pdf>

Joensen, L., Filges, T., Willaing, I., 2016, ‘Patient Perspectives on Peer Support or Adults with Type 1 Diabetes”: A Need for Diabetic-specific Social Capital’, Health Promotions Research, Stento Diabetes Centre. vol. 10, pp. 1443 – 1451.

Notes On Design., 2015, ‘Too Many Hands’, Pinterest, viewed 10th of August 2016, <https://au.pinterest.com/pin/540502392761523634/>

Zimmer, P., Colaaiuri, S., Gunston, J., Aylen, T., Johnson, G., 2013, ‘A National Diabetes Strategy and Action Plan’, Diabetes Australia, pg. 1 – 17.

 

 

The Misconceptions of Health

Post 1 by Lucy Allen

Obesity and Healthy Living. Where on earth do you begin. Much like the topic itself, my collection of articles for this topic started quite broadly but managed to slowly focus in on a particular and quite personal area of interest, Type 1 and Type 2 Diabetes.

I’ve always found the misconceptions of ‘health’ and what constitutes health very interesting.

The article ‘Skinny and 54 Kilograms, but with the Health Hallmarks of Obesity’ is written by Gina Kolata, an author at The NewYork Times. As a graduate molecular biologist from M.I.T as well as having a masters degree in applied mathematics from the University of Maryland, Kolata has won many awards for her work in the medical profession. Having written numerous amounts of times about Obesity, weight, health and wellbeing with most of these published in the NewYork Times Kolata’s article is a reliable and trustworthy source.

This factual article follows the story of Claire Walker Johnson, telling her story and challenging the assumption that skinny people are healthy. Backed up by statistics and commentary from doctors and other professionals on the issue, this article is persuasive and evocative, making us reassess this common misconception. The argument is not particularly marginal yet not commonly known to many people, presenting a new point of view and in doing so challenging societies own views and opinions.

The idea that thin isn’t always healthy is realised tragically in the prevalence of eating disorders in our society. Rania Spooner a Health Reporter at The Age explores this in her article, ‘Orthorexia Nervosa: Do You Have an Unhealthy Obsession with Health?’. The article discusses how obsession with being healthy can often lead to an ‘unhealthy obsession with eating healthy’. The disease sees sufferers restricting their food intake to dangerous levels. They often undertaking strict diets such as paleo, organic and in some cases the FODMAP diet, developed for sufferers of Irritable Bowel Syndrome. Having written many articles on Health throughout her time as a reporter alongside the research used to back up her claim this article provides and informative and trusted read.

Orthorexia refers to a medical condition in which the sufferer systematically avoids specific foods that they believe to be harmful.

This unbiased articles cites the findings and research of many professionals such as Dr Simon Knowles, a researcher at Swinburne University. Knowles blames the ‘fitspo’ and ‘fitsporation’ obsession that has taken over society, highlighting it as a key link in the increase of sufferers of orthorexia. Whilst ‘orthorexia’ isn’t a recoginsed term and diagnosed eating disorder as yet, Spooner writes that is only a matter of time before it is, a position held by many professionals in relation to Orthorexia Nervosa. This is an example of an extremely informative, well researched and concise article that also offers practical advice on symptoms and treatment of the disease.

Another eating disorder that seems to be less recognised is ‘Diabulimia’. The disease sees Diabetics purposely restrict their insulin and bingeing on food. This results in high blood sugar levels and eventual weight loss. Much like Orthorexia this disorder isn’t yet included in the Diagnostic and Statistical Manual of Mental Disorders as a diagnosis despite effecting many people worldwide. The article ‘Diabulimia Signals Trouble in Type 1 Diabetes’ is written by Lorraine Platka-Bird, a writer for Medscape and qualified dietitian and nutritionist. The issue of ‘Diabulimia’ is approached by Platka-Bird from a non-biased yet emotive position, using the story of an individual to illustrate the damage the disorder can have.

Diabulimia refers to an eating disorder in which people with Type 1 diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss.

As a regular contributor for Medscape and having studied, taught and published research into nutrition Platka-Bird was granted one of the most prestigious teaching awards offered in the State university system. Her expertise is present throughout the article in the clearly articulated breakdown of how this eating disorder materialises, treatment options and effects it can have both physically and mentally on the sufferer. As a type 1 Diabetic I find this article quite distressing to read, understanding the ways in which these individuals abuse their bodies and health in the name of weight loss. It is encouraging however to come across such a well researched and knowlegable article around the subject of Type 1 Diabetes.

Being a Type 1 Diabetic from the age of nine I’ve grown up with the disease, allowing me to take control from the very beginning and live an independent life. I try not to let Diabetes rule my day to day life and I particularly love chatting to people about it, to educate them in the disease. A common question I get is, ‘So did you get Diabetes because you ate to much sugar?’ or ‘What really? But you’re not fat?’. Common misconceptions around Type 1 Diabetes come down to a lack of understanding between Type 1 and Type 2 Diabetes.

Madeline Milzark, a fellow Type 1 Diabetic recently took to Facebook to share what it’s like living with Type 1 Diabetes, revealing many of the realities that come with this. Caroline Parkinson’s BBC article ‘Diabetes is no Laughing Matter, Say Young Sufferers’ is written based on Madeline’s post, calling for a better understanding of Type 1 Diabetes. Whilst not suffering from the disease herself, Parkinson’s article highlights some of the greatest misconceptions and lack of understanding in the difference between Type 1 and Type 2, going into detail differentiating the two diseases and resonating with me deeply. She calls for an end to the trivialisation of the disease, quoting Madeleine in her statement that ‘Diabetes isn’t your piece of cake, or that super-sized McDonald’s meal with extra fries or anything you see coated with sugar’.

Madeline’s original Facebook post, written to bring awareness to Type 1 Diabetes. (Milzark, 2016)

This article is populated with the opinions of other Type 1 Diabetics on the matter, all supporting Madeline’s post and promoting a better understanding and acceptance. The article is very factual, listing symptoms and facts about the prevalence of Type 1 Diabetes as well as some general information. I feel strongly about the message of this article through Parkinson’s writing as she educates, informs and humanises a disease that is often so misunderstood. It is clear that the key to greater understanding is through better education, “People think you have to be overweight and over 50, but that’s simply not the case. There needs to be more public education”.

Despite my personal desire and that of others to better understand and  further distinguish Type 1 and Type 2 Diabetes, a recent study done by researchers at the University at Buffalo, New York has actually found that Type 1 Diabetics may benefit from some of the drugs used to treat Type 2 Diabetics. The article ‘Drug Developed for Type 2 Diabetes Helps Control Type 1 Diabetes‘ is written by Ellen Goldbaum, News content manager of Medicine for the University at Buffalo with a BA in political science from Barnard college. The article is based upon findings of a study printed in the Journal of Clinical Endocronology and Metabolism that reports that ‘patients with Type 1 diabetes saw improved blood glucose control with a “triple therapy” that included insulin, Liraglutide and Dapagliflozin’.

Motivated by this new-found evidence, this factual article delves into the process and finding of this study, even highlighting problematic areas such as the development of ketoacidosis in two test subjects. Despite some negative reactions, Goldbaum states that this response sheds potential light on future treatment of ketoacidocis. It is clear that the author views this quite marginal finding as a positive discovery, despite the negative experience of some test subjects. Whilst I agree that the potential impact using these treatments could have on Type 1 Diabetics I believe more research needs to be undertaken to convince me fully of it’s longevity.

As my journey into health became more personal I am increasingly motivated to know more. I’d like to explore the assumptions surrounding Type 1 and 2 Diabetes and what it means to be ‘healthy’ further. With new findings and researching being published almost daily I see great potential in persuing these points of interest.

P.s Just in case you were wondering, eating too much sugar as a kid didn’t give me Type 1 Diabetes…nobody knows what did #spooky

 

 

Reference List

Goldbaum, E., 2016, ‘Drug Developed for Type 2 Diabetes Helps Control Type 1 Diabetes’, The University at Buffalo: The State University of New York. <http://www.buffalo.edu/ubreporter/stories/2016/08/dandona-diabetes-drugs.html>

Kolata, G., 2016, ‘Skinny and 54 Kilograms, but with the Health Hallmarks of Obesity’, The New York Times, <http://smh.com.au/national/health/skinny-and-54-kilograms-but-with-the-health-hallmarks-of-obesity-20160726-gqefpg.html>

Morales, M., 2016, ‘Ice-blocks In Space’, Pinterest, viewed 10th of August 2016, <https://au.pinterest.com/pin/540502392762959372/>

Milzard, M., 2016, ‘Facebook Post’, Facebook, viewed 16th of August 2016, <https://www.facebook.com/madeline.milzark/posts/1279186718759710>

Parkinson, C., 2016, ‘Diabetes is no Laughing Matter, Say Young Sufferers’, BBC News, <http://www.bbc.com/news/health-36924362>

Platka-Bird, L., 2016, ‘Diabulimia Signals Trouble in Type 1 Diabetes’, Medscape, <www.medscape.com/viewarticle/857221_print>

Spooner, R., 2016, ‘Orthorexia Nervosa: Do You Have an Un-health Obsession With Food?’, The Sydney Morning Herald, <http://www.smh.com.au/action/printArticle?id=1011628438>