Digital tools can not fix an illness or take away a disability, but they can play a huge part in enabling participation. Here’s my story:
I’ve been housebound with a chronic health condition called Myalgic Encephalomyelitis, (ME) since 2008. I’m also an education researcher, working 5 hours a week, currently on a lecture recording project in the School of Mathematics.
Many things have coincided to make this possible: supportive colleagues, the ability to work flexibly and from home, but the most crucial of all has been making good use of digital tools. Digital tools help me to communicate with others, to network, to give live talks at conferences, and most importantly, they enable me to minimise my energy expenditure. These are some of the technologies that I find most helpful:
The flexibility of studying online (for a part-time MSc in E-learning – now Digital Education) worked really well for me, as my illness is a fluctuating condition. I could go at my own pace and reread bits easily if I was struggling with concentration. In fact, as I’ve written about in my blog, adapting to the limitations imposed on me by my illness may well have been advantageous for learning.
I find Twitter essential for networking, and I’ve met people from my field from around the world. I’ve discussed ideas and joined in tweet-chats. I particularly appreciate people tweeting from conferences as I can follow along even if I can’t be there in person. There are so many new ideas that I would never have come across if I hadn’t seen them on twitter.
Video conferencing and lecture recordings
Skype is essential and I use it regularly for multi-way research meetings with colleagues as well as for conducting research interviews. The connection gained from seeing the people you are talking to really helps to create a productive working relationship.
Recording Conference Talks
As outlined in this article from August 2017, conferences are one of the biggest challenges for people with disabilities or chronic illness. Recently I arranged to present my work remotely, using screencasting software to record the talk in advance and uploaded it to a video sharing site. This gave me the chance to share my work on an equal footing – and also meant it was available for people who couldn’t attend the conference.
Speech to Text and Text to Speech
There are many times when typing is too tiring. When this happens I write documents in Google Docs which gives the option of using the speech to text facility. If used in the web-browser Chrome you can also format the document with voice commands. Commercial software such as Dragon is also available (and might be offered through a University Disability Service), which can be trained to recognise your voice, so offers a better level of accuracy than Google Docs.
When reading is difficult I find that text to speech is helpful. Again, there is software available for this. In Firefox, certain webpages have a ‘book’ icon in the address bar which makes the document more readable and also offers a ‘narrate’ option which I find really helpful.
I also use a Kindle so that I can read papers while lying down, and a foot pedal for transcription.
While technology has made it possible for me to be a housebound academic, it isn’t a complete panacea. I miss out on social events and building the informal relationships that that entails. However, technology has helped to level the playing field. It enables me to achieve at the highest possible level, to be an academic who just happens to have a chronic illness, rather an academic achieving things ‘despite chronic illness’. And that is worth celebrating.