Written in collaboration with the AT Chat
Article first published online at ATchat.com.au
Reproduced with permission.
Assistive Technology (AT) user, Nerine Williams once described herself as a connector of ideas and people, and her investigatory passion for problem-solving echoes just that. She said she started looking for AT years ago for herself and the process had evolved over time as she learnt more, and as her needs changed.
“Initially, it was about my arm not working properly and this was one straightforward problem that was relatively easy to solve,” she explained.
“Once I was diagnosed with Functional Neurological Disorder (FND), it became much harder to figure out. I had to consider what is the problem and how do I solve it – is it my limbs, is it sensory, why am I mentally fatigued?”
Nerine observed how she would be struggling to concentrate, and she said when she got to the ‘why’, she could then focus on ‘how’ to fix the problem and come up with AT solutions that would work for her.
“When my arm didn’t work, I didn’t perceive it as a disability – my arm just didn’t work properly. So, we found things that help me continue doing everything I normally would, prior to this,” she said.
“With the combination of a neurological condition and varied mobility, cognitive and sensory symptoms, it made the process of finding AT more complicated.”
“There is no typical day in terms of symptoms, so it makes it difficult to predict how much or little support I’ll need for each activity within the day (or week).”
“Having AT that can provide different levels of support helps me to maintain as much function and mobility as possible”.
Nerine said she used the obvious AT to support her mobility limitations but needed to do much more research to find AT that could provide the cognitive and sensory support she needed.
AT for physical
“This morning, I’m using the wheelchair, so I still have the energy to do stuff later today and tomorrow. This afternoon, I want to use the stick for a quick errand, so I can maintain my mobility and function. I go with the device that provides the least assistance, bearing in mind the demands on my day and my symptoms.”
Nerine established there was a personal motivation behind choosing certain AT items to support her in life, and that was intrinsically linked to the things she liked and how she saw herself in the world.
“It’s partly about personality – if you wear glasses all the time, that’s part of how people feel when they see you – it’s an opportunity to reflect who you are (AT that looks medical and sterile is only meeting half of the brief),” she declared.
“AT shouldn’t be boring – it can be more than just functional. It can be a happy, joyful representation of yourself. AT becomes a part of who you are when people see you and should make an impression.”
Nerine told her story about choosing her wheelchair and she said it was a functional challenge, but it was also aesthetic.
“My wheelchair gives me freedom and independence, but it’s fun too because it is red and looks a bit modern,” she said enthusiastically.
“I value AT that is functional and helps me overcome a challenge, but I love it even more when it is quirky or fun. Living with a disability or chronic condition can be challenging, so surrounding yourself with things that are joyful can lift your spirits.”
AT for cognitive
Looking for AT problem-solving for cognitive limitations was another level of complexity for Nerine.
“Thinking beyond traditional, typical AT, there are lots of strategies and exercises I use to help my brain function better,” she said.
“To me, AT is not just the obvious stuff, it’s the way you do things differently to support your disability. Things that are created with good, universal design are tools that I can get excited about.”
Nerine listed a range of tools for her memory, organisation, and concentration, including:
- My Therapy (app reminder to do breathing, physio exercises, and take medication),
- Cozi (a family calendar and shopping list app for phone and browser), A hard copy diary,
- Paprika app (recipes, meal plans and groceries),
- Post-it notes, notebooks, emails and spreadsheets, and
- Term planners displayed on the fridge with all assessment due dates for teenagers.
Closed captions had now become a good option for Nerine to compensate for her auditory processing difficulties.
“I can hear what is being said, but I can’t absorb the information. If I really concentrate to understand what is being said, I become very fatigued,” she said.
AT for sensory
There were many layers to her disability, and having been newly diagnosed with Autism and ADHD, following a dual diagnosis from a close family member, Nerine started to see things very differently when choosing AT that would work for her sensory needs. She said the link between the FND, and the sensory challenges became clear.
“Sensory overload is very fatiguing and at its worst can trigger a nonepileptic seizure, so I use a scarf if there’s a light breeze or gusty air-conditioning,” she explained.
Holding up her scarf which was illustrated with bright coloured florals, fading into black, she commented on how it was not just aesthetically pleasing, but the built-in loop style of the scarf sat nicely around her neck.
“The loop means I can put it on myself without having to worry about whether my arm can manage tying or securing it.”
“It felt nice and bright with the colours and patterns, and it reflected my personality through the AT, representing me in a way that was fun, with a bit of mischief,” she said with a smile.
“I now like to choose bamboo material for my clothing because the subtle weight on my skin is reassuring and eased levels of anxiety.”
“I use Loops earplugs to reduce noise rather than noise-cancelling headphones, and I also use fidgets to help me to focus and reduce feelings of being overwhelmed in noisy and visually busy environments,” she said.
AT for life
Nerine declared that AT is woven into every activity in every part of her life.
“There are so many things I use now, without even thinking about it. This is all new and I’m still figuring it out, but I’m definitely up for the challenge,” she said.
“I want to surround myself with things that are joyful, which can brighten my day and I’ve tried to do that with the AT I choose.”
“The AT community is full of positive, proactive, flexible thinkers – when you talk to them it’s not about your disability but about potential solutions to shared challenges.
You often find the best AT solutions are often the low-cost/low-effort ones.”
This is Nerine’s AT, and this is her story.