18 Jun Case Study of a Life and Death Resource
Mourning My Way
The brief was simple. And heartbreaking. Create a resource that explains death, grief, and mourning to a person with an intellectual disability.
A NSW Government Department required a resource for external stakeholders: counsellors, social workers, speech therapists, health workers, and others whose clients were people with an intellectual disability (PwID).
About the Resource
This had been a long-awaited and much-needed resource. The working group who had identified the need included a psychologist and speech therapist. They had put all the content together over several years.
The methodology was clear and evidence-based. The first part was Explaining Death and began with a review of the existing literature.
There were recommendations including books such as Beginnings and Endings and Lifetimes in Between by Bryan Mellodie and Robert Ingpen and, one that’s also in my house, The Memory Tree by Britta Teckentrup. Although they were essentially children’s books, they were also effective for adults if they didn’t understand the concept.
The resource covered the stages of grief and then mourning. The third was a period of time after the loss and a period of mourning and a level of acceptance has taken place.
For each section there were a number of examples that showed how to apply the knowledge in consultation with a client, including specific things to say, pictures to show, videos to play, activities for the PwID to do. These had been put together by the working group in well-laid-out Word documents. In addition, there were blank templates that the professional could print, fill in and customise.
Death is a natural part of life and all living things have a life cycle.
It was important to convey the information to people with an intellectual disability with gentleness, but neutrality. Excessive sentimentality and euphemisms would be confusing and unhelpful. The truth and facts of death had to be spelled out, as well as the emotional and psychological implications of how death can impact our feelings and behaviour.
It was Autumn at the time. Raking through the leaves of a giant liquidambar at the front of my house, I was thinking about how to design this resource. Some of the leaves were yellow gold, some were amber, some a dark russet. A few of the evergreens mixed in. After Autumn there is Winter. Then there is Spring. The design theme and colour palette were right there.
The goal was to create a resource that could be printed in full or used on-screen as an interactive PDF.
The source files were a mixture of graphics, Word documents, PDFs, YouTube videos, and website links. I decided on Adobe InDesign for an interactive layout and finish with Acrobat Pro.
The initial design and layout was made in Adobe InDesign.
Each section was given separate Master pages. These meant each section had its own range of the colour palette and had its own chapter cover pages, coloured sidebars, and page numbers with a distinctive leaf.
The master pages also had Forward and Back buttons and a Contents link in each Footer for easy navigation. The InDesign file also contained active hyperlinks to resources, templates, videos and websites.
I exported the publication to an Interactive PDF from within from InDesign.
Attachments and Appendices
Some of the examples in the appendices were converted from Word to PDF. I chose to do this because there were a few columns and a number of floating elements and I didn’t want things didn’t ‘move’.
The templates, however, needed to remain as Word documents. A variety of users needed to print and fill in the documents without hassle. Nearly everyone has Word.
The Examples and Templates at the end of each section were attached as separate files in Appendices at the end of the document.
Acrobat Pro is able to attach files including Word documents, so my workflow was to do this last.
Also within Acrobat Pro, I added the metadata, resource name, language, copyright information, and authors.
Accessibility was also important. You can never assume that people using the resources will not have visual problems or tremor as a result of Parkinson’s disease, for example. Accessible design is a human rights issue. An accessible design enables those who require assistive technology (such as a screen reader like JAWS or other text-to-voice software) to be included in your audience regardless of whether they have a visual, physiological, or neurological impairment
Acrobat has accessibility features that allowed me to double-check that the reading order was logical, the colours were readable, and the images all had alt text.
During the layout phase in InDesign, it’s common for the styles to get muddled. It happens. This happened to me. But doing a full sweep of the document and ensuring every element had a ‘Style’ assigned meant that screen readers would be able to deliver the resource to everyone.
People with an intellectual disability often look just like everyone else. Unfortunately, the most commonplace symbol of disability is the wheelchair. This is really backward.
Autism and its wide spectrum is almost impossible to define visually. There is no one archetypal person who is representative. After extensive thinking and searching, the team agreed on a set of specific images of people in different settings.
I’m not inclined to use creative commons because photographers can change licenses without warning, but we ended up using a few cadaver lookalikes from Flickr simply because I couldn’t find better dead people anywhere else. Lesson learned: if you need a cadaver, Flickr.
We went back and forth with versions and corrections by using Google Drive and sharing links, rather than emailing the very large publication. Using Acrobat, the working group team members were able to make markups without huge downloads and uploads.
What I learned
A challenging project is often how we extend ourselves. We dive deeply into the full features and capabilities of the tools we use every day. InDesign and Adobe Acrobat continue to be my tools of choice. Life without Photoshop is unthinkable, and while it keeps getting easier, the continual barrage of new features makes it the software you never stop learning.
I am grateful to the team for giving me this job. It was fun to create, and a privilege.
I can help with your resource or publication. More information about Resources & Publications is here.