51 - Darren Brown discusses Disability

Episode 51 of the Long Covid Podcast is a chat with Darren Brown, Chair of Long Covid Physio. Darren talks about what disability means and can look like for different people. Measuring disability can be so difficult and he discusses some possible better ways of doing it.

This is a fascinating short follow-up to episode 47 (which is absolutely worth a listen too)

Links:
1) Website 

2) About Long COVID Physio

3) Resources 

4) Quick Access

5) Video Series

6) FisioCamera

7) Safe Long COVID Rehabilitation (World Physio Briefing Paper)  

8) Long COVID Physio International Forum

9) Forum Programme

10) Forum Registration

11) Episodic Disability

12) Episodic Disability Research

13) Understanding disability

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Transcript

Darren Brown  0:00  
I want to talk about disability and rehabilitation, because I think that the general population has a perception of what disability is. And often they're visible disabilities, you know, if we look at imagery of what a disability is, the most common icon is a wheelchair. So we often think of disabilities in very physical, visible terms. 

But we know that that is not actually how modern updated language, science and policy and advocacy, decades of disability rights and disability justice advocacy, has enabled us to get to a point of understanding what disability is. So if it's okay with you, I'd love to talk about disability, if that's all right, 

Jackie Baxter  0:44  
yeah!

Darren Brown  0:44  
I think it's so critically important for us as people living with long COVID, that we not only stand on the shoulders of giants and lean on the knowledge and skills, but also make sure that we're up to date with the history of disability, and where we are with it. 

So, in terms of disability, I mentioned that, you know, there's a lot of general perception of like visible physical disabilities, and that actually comes from a real long historical basis. So once upon a time, disability was very much classicalled in a biomedical model, which is that disability was considered as something that only affects body parts or functions. So it was an impairment. So classic example might be someone who's had an injury and had to have an amputation, they've got a prosthesis, they'd be classified as having a disability because they've got a impairment of their leg. 

But that was seen as outdated, many, many, many decades ago, and was actually seen as oppressive and marginalizing, because it didn't take into consideration that people's environments, their contexts and their social structures also impact on people with disabilities. So for example, that person who is a below knee amputee, may be able to perfectly work and do all the things that they want to do meaningfully in their life, with the appropriate prosthesis and abilities to get into buildings. But if the social structures aren't there, and the environments don't enable them to participate through adaptations, such as lifts or accessible environments, then they are disabled by their environments. And that was called the social model of disability. 

But what's interesting is that in the 1990s, disability rights and justice, and also science and academia, moved forward beyond the social model of disability. And what came from that was kind of a merging of what was biomedical and what was social and creating something new. And the reason that that was needed is because the social model of disability was incredibly important in moving forward the rights and justices of people with disabilities. But it also didn't include the very physical impairments that people do experience. So when you've got a physical problem, that may also disable you. 

So the World Health Organization published, something called the International Classification of functioning Disability and Health - it's a right mouthful, but it's abbreviated to the ICF. Basically, what it means is that a disability is an interaction between a health condition a person may have, any impairments they might have of like their body, or how their body functions, whether they've got any limitations to the activities they can do in day to day life, whether they have any difficulties in participating in social, and community life, like family, or social roles, and the environment, and the context that they are within. 

Makes disability really complex to understand. And actually, for many academics that work in disability, they can run down rabbit holes, trying to understand this and it becomes really, really difficult. We know that this ICF model is the most commonly used conceptualization of disability. And it still is, it's not without criticism. There are criticisms on it, many other models have been created. 

A model that I am particularly in favor of, and I recognize my biases in that, is a model that came from HIV, which is something called the episodic disability framework. What it recognized is that people living with that healthcare condition, didn't experience a static or a linear or binary disability, that actually they had periods where they were feeling well enough that they maybe didn't want to classify as having a disability, but periods where they were not well enough, where they did adjust or accept that label of disability, and it wasn't always the same and it fluctuated and changed. And so this episodic disability framework defines disability as any impairment or body function or structure or physical problem, should I say? So a physical problem with a body a cognitive problem, a mental or emotional health problem, difficulties with day to day activities, challenges to social participation or community life, but also uncertainty, or worry about future health, and how all of those dimensions of disability can go up and down, can be triggered by different things, made better or made worse by things that can be within us, internal, or external to us, like stigma or shame or environments. 

So, I'm a particular fan of the episodic disability framework. And we're currently doing research, funded by the Canadian Institute of Health Research, to explore the conceptualization of disability experienced by people living with long COVID. To see whether this framework of episodic disability does or does not meet people's experiences. 

This is a two phase research study. So the first phase is qualitative interviews, we've done that across the UK, Ireland, Canada, and the United States. We've conducted 40 qualitative interviews and we again, use purposeful diversity in our sampling and we're really proud of the diversity we've achieved and our sampling, to identify the themes that emerge and see whether they do match or not match with the existing episodic disability framework. 

And the aim of this will then be to modify an existing measurement tool called the episodic disability questionnaire that measures the presence, the severity, and the episodic nature of disability experienced across any of those dimensions. And we're going to see if we need to modify that questionnaire, specific to the needs of people living with long COVID, and then evaluate whether it's reliable and valid. 

So we are doing a lot of work around this idea of disability. And actually, at the forum, the person who created the opposite disability framework, Dr. Kelly O'Brien, from the University of Toronto, who is one of our researchers in this study, she will be doing a whole session on episodic disability. So come and join us if you want to know more. So the research behind it, where it came from, or maybe some of the preliminary results of this study.

Jackie Baxter  6:57  
That sounds brilliant, because I've been, you know, just again, anecdotally, but you hear people all the time talking about their PIP assessment or benefit assessments, and the episodic nature of something like Long COVID just is not understood at all, you know, Can you walk 100 meters? Today, I could, tomorrow, I might not be, you know, that sort of idea of it being different every day is just not understood, or not accounted for in assessments such as for benefits.

Darren Brown  7:30  
I work clinically in HIV and cancer. And I get asked often to write letters for benefits reviews for patients. And I have found using the episodic disability framework and the episodic disability questionnaire, to be instrumental in supporting people to be able to get the appropriate support they are entitled to, through their assessments for Social Security or benefits. You know, in the UK, it's called benefits, right? But for other people in other countries might term it Social Security. Because when we use the language of functioning, and detriments in functioning, meaning disability, we know that the benefits reviewers are looking at not whether you've got a health care condition or not, they're looking at how you do or do not function in day to day life, because that is how disability assessments are assessed. 

And I suppose it makes sense, right? Because not everybody with the same health care condition is or is not disabled by their health care condition. But if you are, it's about the things that you struggle in day to day life with, and the detriments or the difficulties or challenges with functioning. So functioning is a term that may not be fully understood by people, but it can be things like washing, dressing, cooking, cleaning, seeing, hearing, communicating, socializing, working, going to school, those are examples of functioning in day to day life. And so when a healthcare condition interacts or impacts on our ability to function, that's when we experience a disability. 

And I think that in society, a lot of us have maybe unconscious biases around disabilities. And I think that within the space of long COVID, I think there's a lot of space for us to do really well about understanding disability better in terms of advocating for rights and justices, but also in terms of support mechanisms. 

We're looking forward to the results of this study that we're doing. But you know, from my own personal experience, and what I hear from others, the episodic fluctuating, unpredictable, waxing, waning, relapsing, remitting, they're all the same thing, right? Just different ways of saying the same thing, that's so commonly written about and spoken about, and it's that often unpredictable nature of it that makes it so challenging, but certainly what we're learning is, that the longer people live with long COVID, the more resources they develop internally to better mitigate or manage the fluctuations or the relapses. Learning the triggers of massive relapses, and trying to prevent those relapses and try to better manage. But still the symptoms can go up and down. Whether you work harder or not the symptoms do what they do, don't they?

Jackie Baxter  10:26  
Yes, exactly. The unpredictability is always going to be there, however, well, you know, your abilities.

Darren Brown  10:31  
And that's why I think that rehabilitation has a really well placed role in anybody living with a disability. But I know that rehab can sometimes be seen as a dirty word, especially when it's with the historical context of what's happened in ME/CFS. And so I want to be really clear that, you know, rehab is not exercise alone, you know, rehabilitation is not synonymous with exercise, but it just so happens that a lot of rehab does use physical activity and exercise. But rehab is about health and functioning in everyday life. It's about education, skills, training, equipment, adaptations, modifications, knowledge, you know, and that can include things like, for people that aren't able to stand up in the shower, because of orthostatic intolerance, is using a shower stall. You know, people might say, Well, I did that myself. And that's great. That's self rehab. That's, that's amazing that you've been able to find that resource that can help. 

And then pacing is a rehab intervention, as is monitoring signs and symptoms to prevent relapses and triggers of flare ups and episodes. So you know that rehab has a really valuable role. And I think that I want both people living with long COVID and other health care conditions, but also, rehabilitation professionals and policymakers to know that rehab is important. But it's important, but it's individualized, when it's person centered, when it's risk stratified. And it's not a one piece of paper with all the information on it as a recipe, because everybody's needs are different. And when you live with an episodic health condition, like Long COVID, or ME/CFS, or HIV, or cancer, or chronic lower back pain, you need an individualized approach to your care. And that doesn't mean that we can just deliver the same thing to everybody. So safe. Rehabilitation does not mean giving exercise to everybody. 

So we need to make sure that we have excluded some of those symptoms like post exertional symptom exacerbation and post exertional malaise, before even considering whether someone may want to be more physically active. That what I know from what I hear frequently from people living with long COVID, is that it's not for want of trying. I want to get better, I want to do more, I want to have my life back, I want to function. And I don't need your advice to tell me to move more, because that's actually what I'd like to do anyway. 

So I think, you know, a lot of what rehab is learning, rehab professionals are learning, as much as people living with long COVID are learning - what is the right types of rehab, and I think we're getting there. And we're getting there slowly. But you know, there's still a long way to go. And I do hope that the long COVID International Forum is a step towards continuing that journey of education and knowledge and sharing of information across many different and additional directions. So that we all have as much knowledge, because we know that knowledge is power, right? And so if we can connect we might make some more changes.

Jackie Baxter  13:44  
Yeah.

Transcribed by https://otter.ai