This is a three-part podcast series that’s been created by Sam and I for people with disabilities who are currently residing in aged care. For those exploring the SDA options and they may be struggling to understand what their future looks like in SDA while they're living with a disability.
My name is Karen and I’ll share a bit about myself in a moment. But first here’s Sam...
Hi, I’m Sam. I’m a 36-year-old power wheelchair user and I use a text to speech device to communicate and I am dyslexic.
I have dystonia and I had a stroke. I have a bachelor of fine art, but haven’t taken study further because it’s hard for my disabilities. My art-making is very political. I like fun, quiet things.
My voice will sound a little different as I switch from iPad to my Allora speech device.
Over to you, Karen.
Thanks Sam, I’m going to need to work hard to dispel the myth then that I’m just a boring middle-aged accountant. So, I’m Karen and I’m 50-something. I have a master of professional accounting. I work from home doing that. I’ve had a life-long disability of a form of muscular dystrophy, but about seven years ago I had a fall and broke my hip and pelvis and ended up permanently in a wheelchair. So I now use a power wheelchair for my own independence. I spent 13 weeks in a nursing home. I live alone. I’m hoping to move to SDA next year. I’m a disability advocate and I love having fun and I’ve discovered a love of travel and I’ve decided that I’m not waiting for the world to be more accessible, I’m just going out there and doing stuff and the rest of the world needs to catch up.
Two years ago I went on a dream trip to Europe and with the help of some friends, visited about four countries and had a ball. I also enjoy going to concerts and just being out in the community and watching people.
Oh, and I love food. I really love chips, and ice cream and donuts but apparently I’m pre-diabetic, so I really shouldn’t eat them anymore.
Me too. Love love chips. Best when you’re really hungry. And pizza. But just not ice cream, hurts my teeth, waah.
I think that we can often feel really alone in our experience of disability and being dependent on others can leave us feeling uncertain about our own capabilities. We can experience trauma as a result of living in aged care and having to deal with the emotional aspect of living with disability means that sometimes we get overwhelmed by the whole SDA decision-making processes.
So this podcast series with Sam and I, we discuss the different aspects of living in aged care and moving out.
Part 1 is about grief, loss, and mental health.
Part 2 is about fears about moving and challenging others’ perspectives around disability.
Part 3 is about what it’s like living in SDA and having hope for the future.
This is Part 1 - about grief, loss, and mental health.
One of the really important things when addressing a move to SDA, I guess is to realise that moving to a new home won’t necessarily change our lives as we know it. There’s a lot of aspects to looking at mental health and dealing with a new way of life. And one of the processes I guess is dealing with grief and loss and I think that people who acquire a disability experience grief and loss in a similar way to those who have had a lifelong disability but who have had a sudden progression of their disability due to other factors. And I think that Sam has some really great things to talk about with her experience of grief and loss.
When I was little, they used to say, “When you get better, we will do this, we will do that.” So much pain from loneliness. And so much time lost. I felt the lack of people around me hugely and I blamed my disability. The grief of seeing siblings getting opportunities and not me. The grief of me being dragged on a family trip and left behind on a walk, where they saw baby emus and a waterfall and no one was there to accept my tears. Baby emus, waterfall, yeah, big deal. But it was more than that. It was me being left out of so much. I wish people would see how much damage they were doing, by forgetting me.
And on top of that, I had a condition that slowly took over all of my nerves, that I wasn’t going to Secret Garden my way out of. I tried and tried.
I saw speech as my biggest problem. I could not be understood by many people and that was slowly shrinking because my speech was getting worse.
I got a speech device, but I find the lifetime it takes for me to write something is too much for many people and I can’t make up for it with my body. And I have dyslexia too. This is so traumatising and re-traumatising. I had the second operation which gave me a stroke. It shattered me afterwards because I didn’t have to have the second operation. I wished I had have said no. I kind of had a life before the second operation and ultimately, the operation was unsuccessful, but it was a pretty hard and lonely life. We didn’t have the NDIS and one of the doctors said maybe my speech would get better if I had the second operation. If I had the support and right kind of, like I am now, I probably wouldn’t have done it. I had a mistrust of people and not without reason. My carer abused me as a kid and many support workers just fall into the job. They are exhausting and traumatising to be with, so anything that could give me relief from that was just too tempting.
A support worker chided me saying, “You knew the risks.” They had caught me crying over a show about a person who had the same operation. It was successful and their family were getting their whole home made over because of it. Meanwhile, I was stuck in a group home. The utter insensitivity of them saying it just seared onto my brain forever. Ironic that one of the very things I have been trying to avoid happened.
I can’t cry about it now because I am too traumatised.
They can’t face us crying because they fear the empathy will destroy them and maybe it will, but I really wish they could just suck it up like I have had to. Like we have had to. And see that it’s actually okay. If people weren’t so ableist. I have come to the understanding that a lot of what I have suffered is due to society, but that doesn’t make much difference.
Thanks, Sam, for sharing your story. Having a disability is really hard but I think people don’t really realise the level of trauma and grief and loss and isolation and exclusion from society that people with a disability experience on a day-to-day basis.
It’s really interesting that you mentioned about people being ableist and I guess there’s some people that might be listening to this podcast that wouldn’t quite understand what ableism is and it’s sort of like that negative attitude that people have towards disability and the thinking that people with disability are less than, or that their life is tragic. And I think that you talking about your grief and loss throughout your childhood, despite me having a disability my entire life, I didn’t experience that feeling of grief or loss or feeling of left out throughout my childhood or my teen years, or even my 20s. I think that that was my own internalised ableism that I wasn’t deserving of a life that other kids experienced or other adults experienced and I denied myself a lot of things throughout life and it wasn’t until I had the fall and ended up in a wheelchair that I started to have that grief and loss process begin with my life.
It was sort of like a loss for what I thought my life would be moving forward, but also, I think once I came home and I was experiencing a lot of social isolation and that feeling that I wasn’t being supported enough by friends and family, because they were living their own life and there was no room for this person in a wheelchair that couldn’t drive to their house and visit and do that sort of thing. It seemed to be an effort to try and organise the logistics of everything. And that’s, I think, when I began this grieving process and it was not only for the life that I thought I lost, but the life that I never really had and that, had I been supported throughout my earlier life, my life could have been a lot richer and a lot more than what it was.
The positive from this is that with NDIS and with supports I’ve been able to do a lot more with my life in the last three years than I did for the previous 48 or whatever it was, before NDIS came along. So, it was also these feelings and perceptions that I had about myself, so when I walked, I wasn’t a normal walker and I looked like I had a bent back and I waddled and all that kind of thing, so I was always trying to hide this feeling that I was different and this shame that came with having a disability. And then when I was in the wheelchair it was like well, people just accept that you’re in a wheelchair, so how you look is less, I don’t know, less of an issue I guess for people. So it kind of made me less fearful – and the freedom that I got from being in a wheelchair. I could go places that I could never go before because I couldn’t walk that far.
So I started to do things that I’d never done before like going to concerts, going to festivals, all sorts of things. I’m not saying that it was easy because there’s all that issue around how do I go to the toilet? Who’s going to help me? As my condition progresses, it’s harder and harder to do things, but I guess knowing that I’ve experienced those joyful moments have been something that’s got me through and I guess, preparing me for the next stage of my life where I’m moving into SDA and, yeah, I think that that’s my process of grief and loss and I fully get where Sam’s coming from when she’s experienced that grief and loss her entire life. I think mine was a case of denial and that shame around disability that I didn’t even address any of those feelings throughout my childhood.
I did have shame about being disabled, like people would say, “Walk straight.” And I would take that on board.
Like when I couldn’t run as fast as the others. It was a huge blow, because all of my heroes then could run.
Mum would always say learning to read is the most important thing, but I couldn’t properly and that filled me with another kind of internalised ableism.
It’s only now that I realise how much society has this expectation that everyone must strive towards this so-called 'perceived normal'. I experienced teasing about the way I walked down stairs one day, so the next time I was walking down stairs I tried to do it the normal way and I fell down the stairs. So I think that when we meet the expectations of others, we’re praised, but when we can’t manage to reach those often unrealistic expectations, we feel like we’re a failure or we're lazy or we’re less than.
I have severe anxiety, the kind that claws at your lungs. This often leads to depression and now painful cramps. I wish I could cry, but I really can’t.
It doesn’t stop me from going out, because ableism does. I’m afraid of being stuck at home, which I often am. Things often repeat in my head, over and over again. I find it hard to handle repetitive sounds like a tap dripping, the radio and TV really get to me. I have a phobia about being in bed and this means I can’t really sleep in and I generally have a fear of being trapped. I also feel my dyslexia is trauma-based.
Thanks Sam. Yeah, I think that mental health goes hand in hand a bit with disability, with the issues and the trauma associated with it and used to think that I was normal and the tears that I was experiencing were associated with not being able to walk after I had my fall, and broke my hip and pelvis, so I put my heart and soul into the rehab, in trying to stand up and walk and I thought that if I could do that, then everything else would be fine. But of course, with muscular dystrophy, it had other ideas. That was, I guess, that realisation that – I didn’t understand mental health, I don’t think, at all, and I had an idea in my head of what I thought depression was and what anxiety was and I didn’t fit that profile at all. You think that depression is not being able to get out of bed for days on end and there should be this heavy fog or some terrible feeling coming over you.
And then there’s the anxiety. I had this impression that there’d be some kind of physical thing, such as Sam described with the clawing at her lungs that would make it quite apparent that I was experiencing anxiety. But then I discovered that there were things like not wanting to hear noise. And I could no longer listen to the radio. There was stuff going on in my head that I couldn’t focus on anything else. I didn't want to be in a room or at home, and I just wanted to be out there in the community all the time. And I think probably the biggest realisation for me, was that I’ve always experienced mental health issues. And there was always that anxiety around just trying to achieve things for me.
I used to have nightmares long after I left school that I’d missed the bus, because that was one of my biggest fears was not being able to walk fast enough to the bus and missing the bus to get the bus home or the anxiety around trying to get up the steps of a bus or the – there’s just so many things in my childhood that I never knew was anxiety related to having a disability I guess. And so, it’s things that you suppress down and you just think that you suck it up or get on with it. I needed counselling to build a toolkit to deal with all the stuff I was going through. I recognise more now that there is no such thing as normal and there’s so much that goes on, I think, day to day with everyone and then when you have a disability that you’re dealing with, I think that that exposes the rawness of the mental health of not just yourself, but those around you.
I didn’t go to school. But yes, the later stuff was exactly the same.
So Sam, was there anything that helped you through these experiences?
Lots of reading and listening about others, and of course getting angry about what has happened to me all over again. But knowing I had things to call them was pretty powerful.
Is that what you’re saying that helped you cope with mental health issues was that learning more about the disability community and that not feeling so alone with your experience?
More my anger about them had names. But yes, hearing other people’s experiences is hugely validating.
I feel it’s important to hold onto the anger because it is fuel for change.
With regards to what helped me, I don’t think that there is one thing in particular. It’s been seven years since I had my fall and couldn’t walk, so that’s a long time to be processing all that’s happened to me. It probably took me three to four years reflecting about my life as a whole, and coming out the other side, what has helped me was to be more open and honest with my friends.
I’ve had friends with mental health issues that are non-disabled. I think that them sharing their experiences and their own struggles and having that acknowledgment that your feelings are valid, even if they seem a bit irrational at times or knowing that when people are experiencing mental health issues, you can feel like your thoughts are all over the place and – in hindsight, you’re irrational, but at the time, you’re just in that spiral of downwardness and hurt and anger.
I did do counselling; I can’t honestly say that that was a magic wand at all. I think that it was, that process of understanding my reaction to things or how I processed things and recognising behaviours within myself as well, because I think that the way I react to something is really important to process that and to perhaps move on from it and not be angry at the world all the time, I guess.
Finding things that get me out of the house was a good thing. I joined disability advisory committees, so doing things in a positive way to change the barriers and the challenges that we experience on a day-to-day basis. I don’t know what else has helped, I can’t do meditation. I wouldn’t say I’m 100% now, but I have those times where I can recognise what are the triggers and how am I reacting to it. And I think it’s also recognising that people are going through their own struggles and their own stuff and their reaction or non-reaction isn’t necessarily a reflection of how they feel about you or anything in particular, it’s just life.
I’ve learnt to not be as hard on myself, but also not as hard on others either. I’m less anxious about other things - needing the need for control over other people. I think that’s what I experienced most, was that because I had so little control over my own body, that I think I tried to control everything else around me a little bit too much and that – whenever they couldn’t respond to a message, there was that spiral of anxiety. I still experience anxiety and I still experience those thoughts of imposter syndrome and not being good enough. But it’s still that recognition that, “My life is valid and I am valued" I guess.
And acceptance of disability I think has been the biggest positive in my mental health and talking about - learning about the disability community and the social model of disability and just looking and evaluating things from a different perspective. You see how marginalised you have been throughout your life by society and that it’s not your fault when things aren’t accessible. That’s society’s responsibility and you don’t have to internalise things so much and it’s not – and being part of the disability community and listening to people and experiences of disability is really important.
So even though I’d been disabled my whole life, I didn’t mix with disabled people and it was my own internalised ableism again that– “I’m not like them, I’m a normal person”. We’re different people through different experiences and yet we all have similar feelings in common. We might process things differently or we might use different ways of dealing with it and things like that, but there’s a lot of commonality in the way we experience things and I think that’s really important to not be afraid of being disabled and to seek out other people with disabilities.
I think I experienced a lot of trauma around things and there were things that were coming up from my childhood, it’s like, you have these little comments that just exploded in my head all at once from throughout my whole childhood about what I’d experienced. Perhaps in my era, people didn’t know any better. So there was no social media, there was no parental support or anything like that, we’re talking about really cemented ideas in society. I do wonder, like my school had so many steps and I was constantly in a state of anxiety that I would fall or not be able to get up the stairs for assembly and that I was different and all that kind of thing. I just wonder if I had been in a wheelchair from that age, whether or not they just would have shipped me off to a special school, because fixing all those stairs and things like that would have not even occurred to them. Their ideas – and this still happens now – is to fix the person with the disability, not the environment in which they live.
And I guess it’s that acceptance of myself as a valid person that I don’t internalise those comments so much anymore, so it’s not as hurtful, I guess. I’ve let go of that hurt in a way or I've dealt with that hurt.
When I look back at that period that I spent in the nursing home, despite how horrible it was, I think I learnt so much from being in there which has really propelled me to where I am now.
When we come back, in Part 2, Karen and I will talk about fears about moving out of aged care and/or a group home, and challenging others’ perspectives. Bye for now peeps.