The COVID-19 pandemic has highlighted the need for digital literacy throughout Australia. However, many services are not set up with disabled/chronically ill people in mind. Corinne Laurent (née Bedford) is a social media advocate for disabled and chronically ill people. We spoke with her to hear what works for – and what she believes is failing – people living with disability.
Corinne describes herself as fun-loving, quirky, and colourful. If you take a peek at her on social media, you’ll quickly see that she loves crafts and animals and is vocal about the world she lives in. “I was always a girl with peculiar issues here and there,” she says. In 2008 she was diagnosed with Lupus SLE. After battling an onslaught of health issues following her diagnosis, Corinne’s health began to deteriorate in 2017. She suffered life-threatening infections, anxiety and depression, the combination of which led to weight issues. It is only in the last year that Corinne has recovered to the extent that she is no longer fighting for her life.
How does technology assist you in your day-to-day?
Immensely! I actually attribute my Apple Watch to saving my life. One day, I was sitting down to eat, and my heart rate was sitting at 131bpm, which is highly unusual for me. I called an ambulance and spent the night in the ICU. Now, I never go without a device that can tell me my heart rate.
It can be difficult to listen to your body and to trust what your intuition is telling you – having a device to support that decision provides fantastic peace of mind. We also have several Amazon Alexas around the house, including in the bathroom. Alexa gives me the opportunity to be independent whilst showering. I have the knowledge that, should I need help, my husband will be able to hear me from anywhere in the house. It is quite remarkable how many ways that technology can aid our health and wellbeing and give us peace of mind.
What are the downsides to having a society that is heavily reliant on technology but isn’t inclusive for people with chronic illness?
Accessibility and ability are the main negatives. Government services now direct you to go online when you call them. Many even hang up on you when have reached the end of a recorded message. This is so frustrating! Firstly, not everyone has access to this technology. Secondly, the interfaces for many online services aren’t streamlined for ease of use. I know that if I struggle to use it, you can rest assured my 70-year-old father will be asking for help as well.
My biggest gripe is that having a chronic illness often feels like a full-time job. It is extremely tiring. My Health Record has taken a positive step to alleviate this, but a greater level of integration would be highly beneficial for so many people.
I also find that having to be so heavily reliant on technology can really affect relationships, development, and health. Technology is a fantastic convenience but, at times, but it should be used with discretion.
Have you had any negative experiences with technology?
My least favourite tech experiences are when I call companies and they tell me to use their live chat feature, however when I try to do so, they only have a limited number of answers saved, and I can’t get my answer! Automation is fantastic, but there needs to always be an option to speak to a person, because that really can save a lot of time and heartache.
Are there any apps or websites you’d recommend?
My favourite health-related apps are Apple Health and Clue. Apple Health is a fantastic tool for hospital visits or emergency situations. I keep mine and my father’s up to date with our health issues, medications, and allergies, so that when we need to go to hospital or call an ambulance, all the details are easily accessible on our phones. I was recently in hospital and was asked for my list of allergies. I was able to recall them all for the nurse – it’s so dang handy!
The Clue app is my favourite symptom tracker. It’s supposed to be a menstrual tracker, but you can add your own symptoms in, including mood, weight, cravings, pain, social tendencies, etc. It’s a great all-rounder app, which can determine patterns in your health and help you to recognise your traits.
Moving away from health, I love the Last FM app, which tracks all the songs I play and collates that data into fun graphs. I’ve been using it since 2010.
You’re an online advocate for people with chronic illness. How did that come about? What are some highs and lows around being active on social media?
I am indeed. It is such a multifaceted experience. It is incredibly rewarding to connect with other chronically ill people, sharing experiences and talking about our unique situations. However, it is easy to forget that not everyone has this experience in their life or immediate circle, so it has certainly opened me up to judgement, scrutiny, and bullying. It’s mostly water off a duck’s back, but it sometimes hits a sore spot.
Advocating for people with chronic illnesses came about very organically, as I share so many elements of my life online. For many years I was open about struggling, but didn’t share the ins and outs of my health. I made the decision to share more openly because of COVID. I noticed that the online world was changing, and that people were favouring genuine connection and authenticity more and more. Also, people were becoming much more inquisitive regarding health matters.
It has always been my goal to teach people to be kinder and more empathetic toward each other, and this is a powerful platform to try to achieve that. If love is free to give, why not give it freely?
What can the government and organisations do to improve technology/the online world?
So much! For a start, they need to provide greater accessibility and support for our ageing population, for those in low-income households, and for those with cognitive impairments. NDIS is currently structured in a way that makes attaining the appropriate level of support almost impossible. I have been refused the basic help I need several times but must continue to try. It’s exhausting. I realise that many others, less fortunate and/or less connected than I am, will be resigned to struggling.
I believe that service providers, such as Centrelink and Service NSW, should always provide an option to speak to a person when making a call. It can be very difficult to navigate their menus and to try to eventually, hopefully get to speak to someone.
The government provided additional funding for Telehealth during the height of COVID, and I believe that this option should not only be reserved for states of emergency. We have the means to continue with Telehealth as a service. Also, Telehealth allows doctors to see a higher number of patients, as appointments are so much quicker.
I am unable to drive due to seizures and haven’t managed to secure NDIS funding. So, whenever I need to visit a doctor, my husband must take a day off work in order to drive me for two hours each way for a 5–10-minute appointment. The inconvenience and expense were avoided during the height of the pandemic, and should continue to be avoided wherever possible.