Episode Transcript
[00:00:10] Speaker A: Yes. So I'm going to give you a little crash course in my thinking about disability and also my research that I've been doing.
So, like David said, I'm gypsy, speaking to you today from the lands of the Kaurna people, and I want to acknowledge that sovereignty of this land has never been ceded.
I identify as a cisgender woman, which means the gender I was assigned at birth matches my gender identity as a woman. And I use the she, her pronouns. I'm also a lesbian, a parent, a person with mental illness, and a person living with an invisible chronic illness.
And I'm currently writing a PhD called but yout Don't Look Young Women's Embodied Experiences of ME CFS and Fibromyalgia. Now, ME CFS is in the uk, it's myalgic encephalomyelitis.
In the us, it's chronic fatigue syndrome. And it varies beyond that, but you don't actually need to know the specifics of the illness.
But I'm going to tell you a little bit about my illness story. So sort of. So you know where I'm coming from.
So, you know, I was just plodding along, living my life as you do as a teenager, dreaming about the future and struggling through the present when I was about 18, and I just began to feel like more and more fatigued, like exhausted. And like, I'm not talking like I had a bad night's sleep, tired, or, you know, I stayed up too late tired. I'm talking like, literally cannot stay stand up tired, or cannot keep my eyes open, or I can't eat because I don't have the energy to lift that food to my mouth.
And I was privileged to be able to see many doctors and have lots of tests, but no one could figure out what was wrong. And all my test results kept coming back normal. So I kept being told that I was fine.
And at this stage, I was housebound, and I was probably sleeping maybe 20 hours a day with really intense headaches and light sensitivity and dizziness and full body pain and a lot of cognitive dysfunction that we just call brain fog. So difficulty concentrating, difficulty finding the words.
Yeah, just difficulty with the brain.
And eventually I was diagnosed with this chronic fatigue syndrome. And I've lived with that illness for. For 17 years now.
And, you know, the invisible part of this illness is interesting because, you know, I sit here today, you know, presenting and appearing rather healthy, but, you know, you guys listening to me don't know what my embodied experience is like.
And you don't know, you Know just by looking at me what it feels like to be in my body. And then you won't see me tomorrow when I'm going to need to spend most of the day in bed, in a dark room, trying to recover from today's exertion.
So my point here is, I suppose that it's important that you know, you don't make assumptions based on people's appearance.
And you know, when we talk about lived experience of disability, like it's so varied, it's so, so varied.
So, you know, so my experience of chronic illness, of a disabling chronic illness, you know, is really different to that of a wheelchair user or someone who is deaf, or someone with an intellectual disability, or someone who is neurodiverse, so on and so on, so on.
And then we've got all the intersections of racism, sexism, ageism, your geological location, what your healthcare system's like, do you have affordable health care and so on. And all these things really greatly affect the lived experience of disability and chronic illness.
But what ties our experiences together as a group is this experience of having a body or a mind that's, I call it non normative form or alternative functioning. So a body or a mind that works different to the general idea of what a normal body or a mind, how they normally work. And so having, having this non normative body and, or mind and trying to get by in a world that's totally made for people, just with normative bodies and normative minds. So the experiences here, I'm talking about, ableism, disable ism, exclusion, oppression, marginalization, they're the kind of things that tie us together.
And for some of you, these ideas will be really familiar to you, some of you will be living these every day.
And if that's so, then I invite you to contribute or to question or to add complexity as I'm talking.
And for others of you, you may have had the privilege of just not having to think about these issues too closely.
But it's really important that we all think about it. You know, we all have bodies, we all get sick, we all age, we all die.
But more importantly, it's important for social justice and for building a more inclusive society.
So, you know, just like heterosexual people can be allies for lgbtiq, so social justice, able bodied people can be allies for those with diverse abilities.
And yeah, and you know, it's really important.
So I just want to add a quick little definition of I dropped some words before disabilism and ableism.
These are pretty kind of word heavy. They're in the notes but just to give you a general idea of what I'm getting at.
So disabilism is similar to your sexism, to your racism, to your classism.
It's a form of social oppression referring to the social beliefs, the actions, the practices and assumptions that oppress, exclude, marginalise and otherwise disadvantage people because of an actual or assumed disability.
And then ableism takes a little bit of a different approach. So ableism, it's a little bit more kind of philosophical in a way. So ableism is sort of looks at how people with disabilities are often devalued by the sort of the belief in particularly white Western culture that your able bodiedness is your presumed normal.
And, and the belief that often comes with that is that is there anything different?
Any impairment is inherently negative and should be cured or eliminated or treated in some way.
So disability itself is then cast as like a diminished state of being, diminished state of being human.
And one way we can look at this ableism and disablism and, and how they play out is we're going to have a look at some able body privilege.
And because able body privilege is something that's not talked about enough, it still very often remains invisible as a normal and natural way of being.
And you know, here I'm talking both in everyday life but also in academic, in research practice, in research papers you'll often see intersections of racism and sexism and classism being attended to.
But ableism disabilism, able bodiedness just doesn't, just doesn't get discussed, it just doesn't get mentioned much. Not in the same way.
But similar to whiteness and heterosexuality, able bodiedness is a category that contains a lot of unseen benefits and, and privileges.
Some of you will be familiar with Peggy McIntosh's idea of the white privilege checklist. Unpacking the knapsack.
And from this people, people have developed different able bodied privilege checklists which there's a bunch of links on the notes that I emailed out but I'm just going to run through a few now just to give you a different idea of sort of what I'm talking about. So this is about able body privilege.
I can ignore the width of doors, the presence of steps and architectural features of buildings.
So if this is true for you, then you have an aspect of able bodied privilege.
Here's another one.
If I'm in the company of people that make me uncomfortable, I can easily choose to move elsewhere.
I can be fairly sure that when people look at me they don't assume that I would be better off dead or that I'm a social burden because of my disability.
I can assume that when people look at my body they will not question my right to be a sexual being or to be a parent.
I can turn on the television and see people of my ability level widely and accurately represented.
I don't feel like I'm part of a dying species or the target of modern day eugenics programs. Because of how my brain or body works.
Random total strangers will generally not ask me very personal, invasive medical questions.
And here's a few that from a project that I worked on, which I'm going to tell you a bit more about later, but that my group came up with.
I'm not affected by lights and sounds that other people don't even notice.
I don't need to lie down after taking a shower.
And I can use the computer without feeling like I'm dying, which I think that one's my personal favourite because I have been struggling so much on the computer this week trying to pull this talk together.
But here we are.
Alrighty, so let's look at sort of discourses around those traits that we think of as disability.
And so here I want to acknowledge that I'm talking about pretty Western concepts of disability and conversations have been really shaped by sort of male Western values of independence and individuality and autonomy and productivity.
At the end of my talk, I'd be really interested to hear if anyone's got other cross cultural views on disability to offer.
But here I'm looking at the white Western tradition and there's two different models that you need to know about.
These different models, they're sort of ways to attempt to explain the situation.
What's the problem? What's the solution?
You might think of them as different glasses or lenses that you put on here.
All right, let's see.
Holding this up. Okay, so here we have a situation.
Sam.
Yep, this is Sam wants to be at the top of the stairs.
So we put on our medical model glasses and we might say, oh yes, yes, yes, yes, I see the problem, I see the problem. The problem is right here.
The problem is that Sam has a spinal cord injury, so their legs don't work. The problem is right here in Sam's body.
But if we swap those glasses, got rid of the medical ones, put on our social model glasses, we'd say, oh yes, yes, yes, yes, I see the problem right here.
Those stairs, they're the problem.
If they were a ramp or if there was a lift here, then Sam could get up to the Top.
And this sort of social. It's called the social model of disability and it focuses on the disabling environment and it's been hugely important in disability politics and law reform, probably from about the 1960s onwards.
And advocacy through this lens has improved the lives of heaps of people.
But.
There's a but.
But we shape discourse just as we're shaped by it.
Yeah. And when these white Western disability activists in the USA and the uk, et cetera, use this social model to fight for rights and an end to discrimination, it was necessary, or at least most thought so at the time, to really distance themselves from notions of sickness or dependency.
And this has had really unforeseen consequences for people living with chronic illness and chronic pain.
So let's go back to our example here.
All right, we're going to say now there's a lift there next to the stairs, thanks to the advocacy efforts of disability.
Disability activists.
However, I've got a friend who's got the same condition as me and still she can't get up those. She can't get up to the top there. She can't use the lift because she can only spend 30 minutes out of bed a day, and that includes toilet breaks, meal breaks, everything like that.
And she also has another condition called pots, which stands for post or Static Tachycardia syndrome, something like that.
Anyway, what it means is that it's a condition that lots of people with chronic fatigue syndrome and fibro have, and it means your heart rate really, really increases upon standing up or even sitting up. So, you know, these people can't actually use wheelchairs to be out and about.
So, you know, the challenges for my friend, the challenges of living her life, they come both from her body and from her environment, an environment that's built with a particular normative body in mind.
And so, in my PhD research, I wanted to create a research environment that accommodated the form and the function of my participants, you know, and this meant creating an environment that was really accessible to their needs.
And I also wanted the process to be empowering for them. I wanted them to get something out of it, because I knew from my own personal experience how hard it would be for them to participate, and that participating would require major modifications to their daily or weekly routine because of this limited energy, the brain fog and the symptoms being made worse by any kind of physical, mental or emotional exertion, like participating in my research.
So there was going to be a really high cost, individual cost for my participants.
So I wanted to make sure that there was also going to be a really big benefit for them as well.
So I decided to use a method called Participant Action Research or par.
[00:17:03] Speaker B: And
[00:17:06] Speaker A: so what happens in part is your research participants actually become co creators and co collaborators of knowledge, but they also have a, have a help co design the research, design the research questions, the research focus.
And then another central feature of participant action research is the action part, the desire to take action to increase social justice.
There's lots more information on this in the notes and I'm happy to, happy to talk to people more about it after.
But that's all you need to know for now about the method and the way that I used it.
So I put out a call to young people who had chronic fatigue syndrome or fibromyalgia who wanted to work together to create a resource for other people who might be living with these conditions.
And that's all I said, just a resource was very loose, no boundaries.
But right from the start, when I was starting the process of going through ethics at uni and putting out my call for participants and whatnot, I realized that, you know, the people who I wanted to recruit, the people who I wanted to be my participants, were going to have trouble sort of interacting with the material in this normative way.
For example, you guys are probably familiar with your participant information sheet. So that's the information that you have to hand out to participants that tells them basically everything that's going on, including where data is stored and whatnot.
And this is a requirement, this is a legal requirement under ethics.
But I knew my people just were not going to be able to read this three pages of tiny print.
So I set about creating some sort of easier to read versions.
And I, I did audio recording. So I just, I read it out, recorded myself reading it out and had these accessible.
And most of my call for participants I did via videos just of myself talking.
And that was actually where, where I got most of my participants through that because I knew that some people would have an easier time processing information by listening or by watching.
And, and it worked. And this amazing group of people came together and we called ourselves the Invisible Illness Warriors.
And we produced, we ended up producing a booklet and a video based on our lived experience.
There's a booklet here.
Yes, that's my dog.
It's called but yout Don't Look Sick.
And we created these with the hopes of supporting others, living with the conditions and educating the, educating the wider population.
And I'm going to show you a little clip now from the video.
The video is called you Can Ask that getting real about me, CFS and fibromyalgia.
And this section is about daily life and what it's really like. And it ties nicely back into the able body privilege that we were talking about before, or as my group called it, healthy person privilege.
[00:21:07] Speaker C: Running a marathon on a tightrope with a hangover, blindfolded and carrying 50 pounds on each arm.
[00:21:14] Speaker B: I had a relapse in 2014 that was the worst I'd ever had. And I honestly thought it was going to kill me. I lost the ability to walk. Really.
I couldn't get out of bed. And everything I did was such an effort. Yeah, I felt like I was in a delirium. Yeah, my ears were ringing and my vision went and all I could see was kind of like this. This tiny speck.
[00:21:38] Speaker C: Like a pinhole.
[00:21:39] Speaker B: Yeah, like a pinhole at the end of my vision. And I remember, like, crawling down the hallway because I couldn't get up.
Yeah, it was really horrible. And yeah, you do worry because you're lying there and you're thinking, when's it going to end?
When you know, am I going to be able to get up and feed myself?
And the nausea is so bad as well, that it's not just a matter of getting the food. It's a matter of, like, if there was food placed in front of me, I don't even think I could eat it.
[00:22:08] Speaker C: It's days where it's so bad you can't turn over in a bed. You can't eat, you can't drink, you can't think, you can't speak.
You're struggling for even the basest human functions of breathing. That is too much on the really bad days.
[00:22:22] Speaker B: Yeah, I've had trouble breathing, and that's probably.
[00:22:25] Speaker C: That is so much effort. People don't understand how much effort is breathing.
It's just that it just doesn't get me when you don't see me when I'm bad because I'm in the bed and I can't think. That's why you don't see it as at a worst. Brushing your teeth is an exercise. Getting out of bed is an exercise. Changing your clothes is a treat.
[00:22:45] Speaker B: Changing your clothes.
[00:22:47] Speaker D: No one else knows what it's like to need to take a rest after having a shower.
[00:22:52] Speaker C: Yep.
People take for granted being able to. To have a shower.
That is something that I absolutely dread. People don't understand the amount of work that has to go into. You have to have clothes ready, so you have to have all that stuff together. You have to be Able to get undressed by yourself, get into the shower and scrub your body. Now for a normal person that's easy, you just bend down. But if someone has POTS or hypertension, they bend down. We black out.
[00:23:19] Speaker B: There is, yeah, I just don't bend down. I just like.
[00:23:23] Speaker C: So you can't clean your body properly. Yeah, this is just showering. This isn't showering and washing your hair. That's a different thing that you have to have. I have to have a chair in the shower to do that because it's so much standing, so much moving. Holding my arms up for that long is just, it's agonizing but it's also, I can just feel my muscles with no energy and so it's pure half assed job doing it quite frankly. And that's why I wear these. It sort of covers up all the sins. Every day you wake up, you don't
[00:23:54] Speaker A: feel refreshed from your sleep at all.
It's not a matter of whether you feel okay or don't feel okay. It's a matter of how bad each
[00:24:03] Speaker D: symptom is and how much each symptom
[00:24:05] Speaker A: is going to limit you that day.
[00:24:07] Speaker D: There's a really big difference between a good day for me and a bad day.
On a good day I can go to work, get up in the morning and I can get through a five hour day at work with a half an hour break and go home and rest and be able to make dinner and that's my day. But on a bad day I can't get out of bed in the morning. On a bad day I can't. It's really difficult to be able to lift a mug of tea. It's really difficult to walk to the car, let alone remain like concentrating on a road to go anywhere. I can't walk into the supermarket because it's just so overstimulating. And on a bad day, or even on a medium day if I've had a long day, I can't sit in a room with bright lights. I can't be in a room with loud noises or even normal sized noises. I always have to get my partner to turn the TV down.
And on my very worst day days it's a dark room, can't have a tv, can't have any music, no sounds, no strong smells, no nothing. It's just me in a dark room because that's all that I can manage in that day. Yeah, about a year ago I was in a wheelchair at times I rarely left the house and when I did I was In a wheelchair. Because it was too, it was just too exhausting to walk more than just to the car. My exercise was walking to my letter box sent back once a day. That was my exercise that was prescribed by my exercise physio and that was outside of my capacity some days probably two car lengths outside my front door.
[00:25:48] Speaker B: But it's very evident that people see you as being healthier than you are. Oh yeah, People don't really see you when you're really unwell.
[00:25:57] Speaker C: We're away, we're hidden.
[00:25:59] Speaker B: And then you get up and you, you got, you go out and people like, oh, you're fine. And then like two days later you're spending another week in bed.
[00:26:05] Speaker A: Alrighty, I'm going to stop it there.
Yeah, so you can, you can, if you're interested, you can watch more of that.
Again, the link is in the notes, but as you can see from that little clip, like, it was really important that I was able to provide a physical environment where these young people and myself could feel comfortable and our non normative bodies were fully accommodated and embraced. And that meant thinking about a lot of things such as access to the building for wheelchairs and walkers and having places where we could get together and people could lie down and still participate, as well as having somewhere nearby where they could lie down in the dark and the quiet.
And so we had these meetings over the course of a year and people, I invited people to bring a support person along and a lot of them did.
We provided food and drink.
And it was also important to find a location that was fragrance free because a lot of the people coming had multiple chemical sensitivities.
And so this ruled out anywhere on university because of the cleaners that they use in the carpet some and floors. And so luckily for me, I know some great people who run the Dulwich center in Adelaide and not only do they have a beautiful and accessible space, but they use fragrance free cleaning products. And they were kind enough to lend me their space, for which I'm very grateful.
[00:28:01] Speaker E: And
[00:28:04] Speaker A: so now all these accommodations and adaptations I saw as necessary in respecting the needs of my participants.
However, people at the university questioned the length that I was going to accommodate these participants and in particular the amount of money that I was spending, which really wasn't that much, just for the record.
But one thing we clashed over was around taxi vouchers.
I said that I wanted to provide taxi vouchers for people to travel from home to the meeting and back.
And I said this because I knew that a lot of.
That not all the young women drove, and also that driving takes a huge amount of energy. And the crash, the consequences of that drive is really significant in the daily lives of these people.
So to me, it was just a really obvious thing that you would do to support them.
But when I tried to explain that these accommodations were necessary, I was told, and I quote, well, why don't you just get healthier participants?
Obviously, I ignored this advice and I ended up spending my own money to set up the space that I needed. But it just highlights how inaccessible and narrow our ideas around research and research.
And yeah, research methods can be.
Most of the time when people are designing research, they don't even consider the people who are excluded from the participant pool simply because the material is inaccessible or the environment where the interviews are going to be is inaccessible. And this means that the beautiful diversity of experience is not represented in these samples, which we are told then that they're representative samples, but they're not, because the choices that the researchers make make it possible for some people to participate and others not to. And that's not even acknowledged.
Ever.
And alrighty. So wrapping up. I know your brains are full.
Bear with me.
So when you get the time and space in your brains, I invite you to reflect upon the setup of your own therapy place and how accessible it is. Or again, or if you're doing research, do you have stairs? How wide are your doorways? What's the spacing like between the furniture in your room?
Do you wear perfume, deodorant, or cologne?
Have you asked your client if they would be more comfortable sitting down or lying down or talking while walking?
Are you assuming a default normative way of communication?
Have you asked if they prefer natural light or if they're okay with the overhead lights?
Do you have options for phone or video call if they're unable to travel to your office?
Are you making assumptions based on what you can see of their body?
Have you thought about how your own embodied experience may be affecting the power dynamics in the interaction?
And have you considered the intersection of disability, ableism, and able body privilege in your own work?
That's it for me. Thank you.
[00:32:12] Speaker E: Thank you for listening to this podcast from International Journal of Narrative Therapy and Community Work, published by Dulwich Centre Foundation. More about this recording and a treasure trove of articles, videos and multimedia works are available from narrativetherapyjournal.org it's all free to access and share with no login required.
Dulwich Centre is located on the land of the Kaurna people. We acknowledge the traditional owners of country and pay respect to elders past and present.
