E1-CaseE-Fwords

Elena F words (Rosenbaum & Gorter, 2012)

© 2022 Curtin School of Allied Health This work was collaboratively developed by a team to support teaching and learning about the experience of disability and multimodal communication. Karen Wylie, project manager Keegan Ross, project officer Matt Hesketh, consumer representative Kate Carmelotti, student representative Charlotte Huynh, student representative The person described in these materials was employed by Curtin and paid for their time in contributing the work. They have approved the use of all final resources. NOT FOR REPRODUCTION OR DISTRIBUTION COMMONWEALTH OF AUSTRALIA Copyright Regulation 1969 WARNING This material has been copied and communicated by or on behalf of Curtin University of Technology pursuant to Part VB of the Copyright Act 1968 (the Act) The material in this communication may be subject to copyright under the Act. Any further copying or communication of this material by you may be the subject of copyright protection under the Act. Do not remove this notice

Elena is a 22 year old woman who lives in Perth. She has a close knit family and is one of nine children. She lives with her mother and most of her siblings. Approximately 3 years ago Elena received a diagnosis of motor neurone disease (Amyotrophic Lateral Sclerosis). Notes The following pages contains excepts from a WhatsApp interview between Elena and Karen Wylie in January 2022. This interview was designed to give students in this course a deeper understanding of Elena and her everyday life, by hearing her describe her own perspectives and experiences using her own words. The F-words elements (Rosenbaum & Gorter, 2012) were used to frame discussion of Elena’s everyday experiences. While this framework was initially developed for children with developmental disabilities, it may also be of use in conceptualising life participation for people from a range of backgrounds.

Could you tell me a little about yourself and your family? So I’m from a large family, I’m the middle child but first born daughter. I’ve got 5 brothers (3 older + 2 younger) and 3 sisters. In all honesty, we fought a lot as kids (even now occasionally) but we’re also so very close and it’s constant laughter, jokes & banter. The majority of us still live at home with mum but my two oldest brothers have moved out to nearby suburbs but drop in frequently to just check in. My family is my main support system but each one provides a very different type of support from the other. Like my mum, she is the main individual who I go to with the practical things whereas I’d go to my siblings with my emotional things.

What do you like to do for “fun”. …and, given your current abilities, how do you make that happen? Here is the thing about me… now, I don’t like being around too many people so when it comes to doing fun things I enjoy outside the comfort of my home it’s usually the hidden gems around WA that many people don’t know about or go to. With that being said before I got sick I was that odd combo of nerd who spent most of her time in either a library reading or home having deep family debates about various topics but also an athlete who played every sport known to man, favourites being soccer and track. With any other spare time available I took up creative hobbies like singing, painting, writing (poetry, personal opinion and views) that few people know about until now. Given my current ability levels though I try doing activities that I know I can handle and whoever is assisting me is comfortable with whatever we’re doing like when I went skydiving with a few friends, I knew my friends and staff could help with assistance but I also brought my brother and sister for reassurance.







Imagine I know nothing about you. Can you describe your current physical abilities. What are you able to do? It was so very weird to me not being able to do what always felt like simple things without having someone else ready and on standby. Within a few months I went from walking and completely healthy to being in a wheelchair. Actually for the longest time I didn’t want anyone to help, I was determined to do it all by myself but with the occasional stumble or fall I kinda knew that was not really a long term option. So I’m a one person assist which means I only need one person to just support and keep me stable while stand up to transfer or take a few steps from like my chair into my bed or the car. I can’t actually feed myself anymore, my arms and hands were the first things to be affected but I’m still able to use them, like my thumb is what I use to type on my phone and reposition my blanket if I’m cold or hot in bed, scratch my nose if it is itchy (can’t lie it’s a struggle haha)

I think my level of physical control is not too bad since I work very hard to maintain what muscle mass and control I still have by going to physical therapy and having PT come to the house but when it comes to my neck control that is a bit of a struggle cause it was not something I really thought about before… until I would get whiplash in car rides or while eating/drinking my head would tilt to an awkward position. Since mid last year I began wearing a neck brace, and in all honesty my control has improved. My eating and drinking is the one thing that hasn’t been affected dramatically to me. I’m on a minced and moist diet at Wilson and respite...but at home or whenever I’m with my family I will eat just about everything. I do take a longer time eating and depending on how my appetite is going the portion size will usually decrease.

I gather you are a social person with lots of interests. Can you tell me a bit about your friendships? People that know/knew me will probably tell you that I was the definition of a social butterfly. I could strike up a conversation with the quietest kid and become friends from there. The diagnosis at first didn’t affect my friendships, since we were still in school things felt somewhat normal. I was participating in the same stuff as before, still going to sport matches, inter-school carnivals. On weekends they would pick me up to hang out or just come see how I was doing. After we graduated I kind of knew things were going change and honestly I didn’t mind it. I know we all had busy lives working and studying. They (friends) began coming around less and less after a while. I’ll be candid, I’m the one who did slowly start to withdraw myself as the progression of the disease increased. A few friends and I still did try to maintain contact through social media, iMessage and planning a time to see each other in person throughout the years, but my family and I also noticed the energy towards me changed with some others. Whenever they would visit, we felt that it was more out of pity/appearances.



There is no doubt that social media is a big part of feeling connected to friends, community and the world. How would you describe the ways you engage with social media? I have had a love-hate relationship with social media for quite some time. I regularly deactivate it to come to myself. Then after a few weeks, my curiosity will start to itch again and I came back. So I’ve gone back and forth between disappearing completely and being completely active. I do use my socials the majority of the time as a means to still interact with the outside. I have a lot of conversations with people via Instagram more than any other platform. I'm curious to see what others are doing and love seeing what is new with them but rarely will I upload photos of myself. I post on my story mostly, things that other people posted, artwork, books I’m reading, and occasionally where I am like the beach or Perth hills just to kind of also \"update\" them too.

It is often difficult to think about the future with a condition like MND. However I know you have goals and dreams you are working towards. Can you tell us about some of the things you hope to achieve in the future? I’ve always wanted to be a teacher…. since I was 5. To finish high school and go to university (either abroad or here) first, then build a life with someone.. that has always been the “plan” for future me. Having MND has kind of made me live more in the moment and not really think about the distant future as much as I used to, my aspirations have changed slightly and have modified my plan to still be able to achieve what I want in life. I’d still like to do teaching eventually but I’m currently looking to kind of follow in my dads footsteps and study criminology. I’ll see how I handle it after a year and adjust if I need to.

So apart from studying criminology @ uni, what else is on the ‘bucket list”? I have a few bucket list items that I really want to accomplish… like cage diving and finding a wheelchair accessible hot air balloon company. And then, if possible, I would like go visit every country in Africa and build a house in Malawi ….haha