Monday, 21 February 2022

Accessibility not. A personal experience at COVID19 testing 2022

Black & white photo Lady smiling at the camera. of head shot.
Cassandra Wright-Dole

Since the early 1980s, I have watched people’s faces as a matter of necessity. My slow but progressive hearing loss meant I acquired considerable lipreading skills from a young age before my profound sensorineural deafness was diagnosed at six years old. 

When COVID-19 began gaining momentum in Australia in 2020 and the mask mandates were first announced, I sat in my car outside the chemist sobbing uncontrollably to my parents on Facetime. After 35 years of successfully reading lips to communicate with hearing people, I was once again a bewildered three-year-old child, surrounded by meaningless noises laden with social expectations. 

In many ways, the lockdown was my saviour, protecting me from the uncomfortable task of dealing with people who thought that simply turning up the volume of their voice behind three layers of fabric would cure me of my disability.

 While lockdown gave me a layer of protection from dealing with the masked world in a general sense, an unavoidable aspect of the COVID-19 world is the need to be tested. The recent high case numbers of Omicron infections, extended family members testing positive following the new year celebrations, and the lack of available Rapid Antigen Tests saw my husband, our son and I in line for a standard PCR test. We had been fortunate enough until then, and it was only my second test and their first.

 When I reached the end of the line at my first testing experience, six and a half hours later, my human rights weren’t the foremost thing on my mind. I was too drained and exhausted to process the extent to which I was dependent on the kindness of strangers to understand what the nurses required of me or to inform the nurses that I was deaf and lipread. I was just relieved that I was inching closer to the finishing line. However, as someone employed in the accessibility field, I was conscious that my literacy ensured a smoother transition from the hot sun into the sterile testing hub. There was nothing to support independent access to information for someone with low literacy, English as a second language, or an intellectual disability. To the best of my knowledge, no one was employed to provide communication support where required.

 If my first test was infamous for the six and half hours spent in line, the second test was notable for the epiphany it brought. Being triple-vaxxed at the time of my second testing experience, I was happy with my experiences at the vaccination hub. Masks were removed to speak to me upon request, I was positioned where I was visible, and staff were informed of who I was, where I was, and (perhaps best of all) that they needed to remove their face mask to communicate with me. I understand the stakes are much higher at the testing sites, and testing staff will not remove their PPE to speak with a D/deaf person. While entirely understandable from an OH&S perspective, there must be alternatives that will facilitate informed and independent communication competently.

 While I had been unenamoured by the forced dependency on the kindness of strangers when being tested alone the first time, the presumption that my husband had a carer role and would speak for me was tacky at best. For context, my husband is a disabled veteran. His disability does not stand out the way mine does, and according to the Australian Government - I am the carer for both my husband and autistic son. When it comes down to who is best able to answer the relevant questions in these situations – for us – it is me. Having been through testing before, I was aware of the administrative process and prepared to advocate for myself – no kindness of strangers required. Despite my preparedness, the nurse assigned to me continued to engage my husband rather than communicate with me directly. For the sake of retaining my mental health, I have learned to breathe through the experiences that deny me the opportunity to have access to information or to speak for myself.

 If we ask ourselves, ‘are frontline COVID-19 staff being supported at a policy level to engage with people who are d/Deaf, have low literacy or have complex communication needs,’ the answer is still a resounding no. Two years into this pandemic, it’s simply not good enough.

 Cassandra Wright Dole


Specialist Content Writer

Access Easy English

Email: cass@accesseasyenglish.com.au
Website: https://accesseasyenglish.com.au/
Facebook: https://www.facebook.com/accesseasyenglish
Twitter: @accessEEwriter 

LinkedIn linkedin.com/in/casswright


Monday, 14 February 2022

NSW CID present Plenary at ASID 2021

 

It was great to hear Jemima McDonald and Pamela Darling from the NSW Council for Intellectual Disability (NSWCID) presenting their plenary at ASID2021.

They made some important points about Easy Read documents. They said that

·      It must be easy to read and understand, 

     but 

     understanding is the key

·      There are no Australian standards. They noted that there is a variety of styles used in Easy Read in Australia

·      NSWCID includes people with an intellectual disability both in co-design and peer review of documents

·      Users of Easy Read may be people with low literacy or those for whom English is not their first language

    Easy Read can be read independently or with support as an interactive tool by workers or family and friends

·      Easy Read is not for everyone.  

Their key working principles are similar to the European Easy Read. Some important elements are

·      the use of white space

·      clear easy words

·      images

·      reduced number of key messages. No more than 10 in a document

·      limit pages to 10 (or up to 20). Break information into separate documents rather than make too long.


Images

Comments made during presentation were

·      engagement of readers can be enhanced by the use of seeing people you recognise in the images. This may help people be connected to the content and feel represented. This is relevant for cultural representations

·      carefully selected images allow you to use less words and sentences

·      do not make the images condescending to an adult audience. Images should be age appropriate and look good.

How does this differ from Easy English principles for the use of images?

Easy English also aims to use images that are relevant to the audience.

Images are chosen to provide the clearest representation of the text. As with the use of commonly used and recognised words, Easy English will use a picture that is most likely to make sense to the reader.

Easy English does not use photo images primarily but sometimes a photo is the best way to represent a familiar item to the audience. For example a photo of a diabetes test kit or a particular building, rather than a drawing type image.

We have regularly found the use of photos of people and 'representative places' appears to be less valuable. Some consumer groups say they prefer photos of people and others do not like photos of people as they seem to represent only the person in the picture rather than ‘anybody’. The exception is of course if the content is about a particular person or place. Then a photo is valuable. This would be the case for

·      the person to contact,

·      the mayor of your council

·      the place to meet for your meeting.

The concept of age appropriate images is complex. It is not simply the case that coloured pictures are childlike. Consumer feedback has told us that clear simple images using colour make the image easier to understand. However images for an adult audience should reflect real life experience. For example an image of real money, a wallet or keycard are preferable to a piggy bank image.

At Access Easy English our consumer reviews provide feedback about the images chosen. We ask people who are likely to be the intended audience to review the work with us. This helps us to match the images as closely as possible to the content.

You can read here and here for a discussion on the comparison of Easy Read and Easy English.

Talk to us about what this could look like for your organisation.

Rachel and Cathy

Cathy Basterfield
Owner Access Easy English
Consultant – Speech Pathologist
Telephone: 0466 579 855
Email: cathy@accesseasyenglish.com.au