World Movement Disorders Day: Stigma in movement disorders

Thank you for joining us.

[00:00:52] Dr. Natasha Fothergill-Misbah: Thanks very much for having me. I'm excited to get going.

[00:00:55] Dr. Sara Schaefer: So as we discussed a little bit before we hit record, this is a really [00:01:00] mammoth topic and there's a lot to discuss, but we'll try to get into it as best we can here. I'd like to start by actually just defining stigma as you see it. What is it? And how is stigma evolutionarily and culturally constructed?

[00:01:15] Dr. Natasha Fothergill-Misbah: Thanks. Yeah, indeed a mammoth topic. And I guess I'll, defer to the literature around definitions of stigma and my kind of take on it as well. But stigma is being defined as this identification of people based on particular traits and be that those physical behavioral or social traits. that are perceived as different to "normal" groups and the subsequent "disqualification".

And I'm using inverted commas, which you can't see but to elucidate those terms of normal and disqualification of individuals. And If we look in the literature, stigma has been linked to these evolutionary pressures to distinguish between beneficial and detrimental social connections.

And so for people to avoid those who might carry these communicable pathogens, for [00:02:00] example it's a very complex and powerful phenomenon that can arise from cultural and community perceptions and Beliefs about diseases, which are often grounded in social inequalities.

And I think that's really key when we think about particular contexts of where people experience stigma. And for me, that is in Africa and I'll come onto that in a bit later. But understanding stigma really requires this consideration of social, political, historical, and economic roots of that stigma and the associated discrimination and subsequent poor health and considering stigma within this broad as social and political understanding involves a focus on the processes of social and health inequalities, social exclusion, and social injustice. So really tackling these really big concepts that can combine together to result in a stigma.

[00:02:49] Dr. Sara Schaefer: So we may. often revert to thinking about stigma in terms of coming from external places, right? People in the [00:03:00] community family members, people in politics or in the media who can stigma actually originate from for persons with movement disorders or in general, and how might it manifest, or what might the consequences of stigma be?

[00:03:16] Dr. Natasha Fothergill-Misbah: Yeah, so lots of different avenues for stigma. I guess if I take it back to the sort of labels of stigma that we see, and so stigma can involve that enacted stigma, which you described, which can be interpersonal, so between people or institutional, and that can result in discrimination by others towards someone because of their condition. For example, because of those visible symptoms that we see with a lot of movement disorders. Then we also have this felt or self stigma, which is also described as this internalized stigma. So that can be associated with a person's feeling of shame or embarrassment. And then finally, we've got this affiliative or associative stigma.

So that's something that's experienced by caregivers, for example, of people with with Parkinson's, for example, and [00:04:00] because of their symptoms. So there's lots of different ways of experiencing stigma, but it can occur across society. So that's at the individual, interpersonal, organizational, community, and public policy level.

So those really encompass all of the ones that you just said. And so I don't think there's any group or persons that can avoid that experience of stigma and it comes from lots of different sources. In terms of its manifestation, A lot of stigma manifests in multiple different ways, but crucially in experiences and practices. And I think those can link back to the kind of types of stigma that I just described. So these manifestations are a result of drivers and facilitators of stigma. And again, there are many drivers and facilitators of stigma. And so we can think about drivers as things like fear of infection and lack of awareness, social judgment, blame stereotypes about something. And then we can think of facilitators as things like cultural norms, gender norms, health policies that are in place, social [00:05:00] support systems, laws as well, and these drivers and facilitators of stigma result in the manifestation of stigma and for example, stigmatizing behavior and discriminatory attitudes. And then these manifestations have outcomes and wider health and social impacts. For example, exclusion, it's a lot of different layers to unpack but if we think about movement disorders and for example, my work is all on Parkinson's. Forgive me if I refer specifically to Parkinson's, but I think there are a lot of similarities across other movement disorders. The visible or physical manifestation. So be it tremor or slowed speech or dyskinesias can, again, I'm using inverted commas, "discredit" and "devalue" individuals from the literature. We see that marking them as potentially different which can result in alarm or avoidance or labeling of individuals by others.

So that's the enacted stigma. But the stereotypes of Parkinson's have also been described as these drivers of enacted stigma. So stereotypes about who should get [00:06:00] Parkinson's, from where in the world people get Parkinson's, how old you are. And again, we also have this idea of body image, which can result in embarrassment and social isolation, which has been reported in literature. So that results in that felt or self stigma among people with Parkinson's. And we've also seen stigma in relation to a changing self or loss of social roles. For example, the perception of no longer being able to provide for the family. And then in Africa, which is my kind of speciality, we see these additional stigmatizing perceptions associated with beliefs about the origins or causes of symptoms, namely witchcraft and curses. And I think we'll have time to unpack those a bit more in the following questions.

[00:06:44] Dr. Sara Schaefer: Yeah, what a great segue to my next question, which is, we certainly think about stigma around a lot of neurological diseases. One that comes primarily to mind for me is epilepsy and seizure disorders. But I want to start with stigma related to a [00:07:00] lack of awareness about diagnoses themselves.

As you mentioned, maybe before somebody even gets a diagnosis of Parkinson's disease or another movement disorder or if they never get that diagnosis and have visible symptoms that others can see that those are attributed to other things because of a lack of understanding of the neurological underpinnings of what they're experiencing.

Can you speak to that and a little bit more and how that's different in different parts of the world?

[00:07:28] Dr. Natasha Fothergill-Misbah: Yeah, certainly. And a lack of awareness is often attributed to a lot of different stigmas. And there's again, another sort of driver and facilitator, which combined with all these other factors can really make people suffer as a result. And just to say that the lack of awareness is definitely a driver of people's perceptions about Parkinson's in communities, also facilitated by things like lack of health policy on, movement disorders and limited clinical past capacity of neurological services.

Meaning, like you said, people don't get diagnosed. And Then these [00:08:00] supernatural explanations in some parts of the world, which drive those stigmatizing perceptions. So things like witchcraft is a rational explanation for why somebody has the symptoms that they're experiencing. Be that the symptoms of Parkinson's or epilepsy or any other very visible condition and additional fears with things like contagion.

So, you know, If I am close to that person, I actually might get that. disease or curse. And so a lot of stigmatizing perceptions and discrimination associated with those beliefs. And that lack of awareness doesn't just result in those kinds of supernatural beliefs, but there are many other explanations in parts of Africa other than curses.

So for example, in rural Ghana, and people from a certain area believe that using firewood from a tree that's been struck by lightning previously will cause someone's Parkinson's and so that doesn't really associate with. Blame, because you might not know that you're using the wood. And so that's more inclusive and there isn't as much stigma around that.

But then in Ethiopia, we see that if you have killed a cat earlier in your [00:09:00] life that you will develop Parkinson's later in life. So there's these various explanations for why somebody has symptoms prior to receiving a diagnosis and knowing that's the name of the diagnosis, for example, and, a lot of those explanations are associated with blame. But in terms of what changes after diagnosis, I think it's worth knowing that the information that people receive at a diagnosis is different across the world. And I know that ideally, we'd like that people in the US and in the UK. We like to think that they get a lot of information and they certainly get more than probably what people do in a lot of Africa, and but it's very dependent on the information available to them and knowledge about Parkinson's given a diagnosis is very limited.

So even when people are diagnosed, they actually aren't always told that they have Parkinson's so you may go away knowing that you've got a condition associated with the nerves, for example, or something to do with the brain, but not have a name for it, whether that's Parkinson's or epilepsy, [00:10:00] as you were describing earlier, and so you can't actually communicate that diagnosis to people. You can't learn about your disease. You can't understand your prognosis. So then people make up those explanations and then we get the subsequent stigma as well. And I talked about those stereotypes as well. So even if you do have that diagnosis, I know a lot of younger onset women, for example stigmatized because they thought to not be the right demographic for Parkinson's and so you you don't fit that classic picture of who has Parkinson's. And so yeah I think there are different ways of understanding stigma pre and post diagnosis in different contexts of the world. that are very specific to the kind of culture and situation that people are living in.

[00:10:42] Dr. Sara Schaefer: Now, we mentioned before the felt stigma, or that internal sense of stigma, and you talked a lot just now about blame and in the explanations for why people may have visible Movement disorders. And also internal senses of shame. [00:11:00] It's a little tough to tease apart, cause versus effect.

Can you speak a little bit to that internal sense of stigma that some patients or persons with movement disorders may feel?

[00:11:13] Dr. Natasha Fothergill-Misbah: Yeah. So again it's quite complex . And I think many people feel a sense of blame of, why me, why have I done this? Why have I got this? And not anybody else, but I think that's something that comes with any health condition as well particularly things that are chronic. Is it something that I did when I was younger?

Have I put myself in a situation where I've been at then at greater risk of developing this condition. And then there's associations with sort of the symptoms itself and the manifestation of those symptoms. So be that I don't want to go outside because actually I know that I shake and I don't want people to see me. And whether that's because they don't want people to know that they have the condition or whether they're actually embarrassed about People seeing them in that state, seeing them change from this person that they were to, to what they are now, whether that [00:12:00] be they might spill something if they go out for food, or they might be able to not be able to move when everybody else is moving. And so those things can result in that self stigma and that I don't want to go out. I'm just going to stay at home. Don't want to deal with anybody. Don't want anybody to see me. 

Whereas actually that's not necessarily. How it might play out if they did go out, but it's that sort of internalized self stigma That might prevent them from going out and that's also for Let's say parkinson's for example That kind of apathy and anxiety already that we see as as symptoms and negotiating that in addition to the isolation that results from stigma is really detrimental to people's well being. If people have quite supportive families, I think it can help negotiate those barriers and overcome the fears that they might have when they go out. But yeah, self stigma is something that is very common among people with movement disorders.

[00:12:55] Dr. Sara Schaefer: All right, so we've talked a lot about how stigma manifests and how [00:13:00] persons with movement disorders may be more vulnerable to stigma in lots of different parts of the world, really all over the world, including self stigma and external stigma and associative stigma, as you mentioned There are, I'm sure, lots of ways that stigma is perpetuated and I'm sure there are also lots of ways that stigma is broken down at individual levels and also with regards to public policy, news, social media.

Have you seen any particular instances that demonstrate the good or the bad of how this can go from those perspectives?

[00:13:40] Dr. Natasha Fothergill-Misbah: I think one of the most obvious ones that springs to mind is that classic image of the older white male with Parkinson's that has certainly perpetuated stigmatizing beliefs across the world, and the idea that only older white men get Parkinson's. And I think a lot of younger people have suffered in the face of [00:14:00] that trying to recreate the image of Parkinson's is affecting anybody. And that's not just in the Western world, but also in the global South and people in Kenya, healthcare professionals saying to me, we do not have Parkinson's in Kenya which is totally not true. And so that's image has perpetuated stigma across the world and not just in, in the high income countries as well. I think in terms of public policy, a lot of Parkinson's, for example, or dementia's or things that affect older people have been excluded from Policy and maybe the media as well.

So they have this negative connotation that and not a sort of attractive in older population, but then associating that sort of Parkinson's disease with older people then excludes those younger persons as well. So it's a difficult balance between Acknowledging that most people with Parkinson's are older and not excluding or perpetuating that stigma associated with younger people who get Parkinson's disease. In terms of sort of social media, and there's a lot of charities, you put out some [00:15:00] interesting films about conditions and movement disorders, and there's a fine balance between portraying it as this really happy go lucky thing, and everybody is fun, and you can see the, The bright side of it versus the sort of doom and gloom of something like Parkinson's and the idea that might perpetuate that stigma against it as well.

So there's a really fine balance between finding your audience and knowing what message to put across in the sense of that. 

[00:15:26] Dr. Sara Schaefer: Well, 

now there's a newer picture that's been put out of a younger woman with Parkinson's disease running. I'm sure you've seen that one as a way to combat that stigma of Parkinson's as only in a certain demographic, right? Because it does affect so many different people across ages and genders. So there's something there.

[00:15:50] Dr. Natasha Fothergill-Misbah: yeah, absolutely. It's really exciting to see these new images. And I know other artists created some images of Parkinson's disease and what people want it to look like and representing the broader [00:16:00] population. I think we've still got an absence of kind of representation of Parkinson's from lower and middle income countries.

So outside the sort of Western world. But I think that's, Moving in the right direction. So in terms of portraying people with Parkinson's from the rest of the world, we've made some films, which we may come on to in the next one next question around TV.

[00:16:21] Dr. Sara Schaefer: Yeah. So let's go there. So representation in film and TV can be an important way for stigma to be addressed on a broad scale. They have a big audience, right? And as you mentioned, it's tough because you want to, represent people, but you don't want to be All sunny or all doom and gloom in your representation.

And I think a lot of what film and TV has moved towards in representation in general of all kinds of different people and populations is not having that particular aspect of them be the absolute central. Piece [00:17:00] of their identity on the show or the film. Thinking about representation of black populations of LGBTQ populations.

And they're just people like everybody else on the show. And when I wrote this question, I was thinking about the show shrinking, which I don't know if you've seen that has Parkinson's a person with Parkinson's disease, who is a successful. professional person who is sought after for his sage's advice and living a vibrant life and his Parkinson's is, it's something that's there and it's something that he struggles with at times, but it's not absolutely central to him as a person on the show.

Can you recall any other examples of movement disorders being represented in a way that Seems to move the needle forward. And as a hypothetical question, if you were a Hollywood big wig, what would you think would be important to consider when preparing to represent a person with a movement disorder?[00:18:00] 

[00:18:00] Dr. Natasha Fothergill-Misbah: I think everything that you've just said in the sense of it's not the sort of sole focus of the film and it's that they're out there a person and they might have Parkinson's but I've seen a lot of people who say I have Parkinson's but Parkinson's doesn't have me and that sort of idea of I'm still a person I still have work to do I have kids I have families I've got hobbies and But I'm also negotiating this kind of movement disorder that impacts all aspects of my life.

And the only other film that springs to mind but is potentially not moving the needle forward is the Love and Other Drugs, which I've seen an old film with Anne Hathaway in it, and she has Parkinson's as a young woman. So I guess positively representing Parkinson's as a kind of different demographic, but it's very much centered around her having Parkinson's and the sort of progressive nature of it. I think, moving forward, having those other representations of not the typical white male of Parkinson's disease would be useful. I haven't seen any other any [00:19:00] other. Hollywood films around it but I think, like I said, just making sure that it is about them as a person going about their daily lives with the added difficulties, let's say, or or, in contrast, the added bonuses of life with Parkinson's, people do become more creative with Parkinson's, so why not focus on those those positive aspects in terms of not Hollywood and documentary film this. Increasingly more documentaries about Parkinson's disease. So rather than portraying it in the sort of movie sphere actual documentaries about real people with Parkinson's disease, and we know Michael J Fox released his documentary recently and from Kenya and Tanzania, we've made a couple of documentaries on Parkinson's disease.

So telling the stories of real people with Parkinson's and their families. Really focusing on the stigma that they experience as a result of having Parkinson's disease but also the impact of access to medication. So really demonstrating that change that can happen when people are started on [00:20:00] medication.

Sometimes something that we take for granted, maybe in the U S the UK, et cetera, is having access to a diagnosis and to treatment that can really change your life. And people think that Parkinson's is difficult. Just imagine it without any treatment at all. And it takes a whole nother direction. So I'd love to share the links to those films as well, if people would be interested in seeing that.

[00:20:21] Dr. Sara Schaefer: Absolutely. All right. So just to close out, you have a global audience here from a variety of backgrounds, what are your take home messages that you would give to our listeners about stigma, combating stigma or anything else that you want to share?

[00:20:39] Dr. Natasha Fothergill-Misbah: Yeah. So thank you very much, everybody for listening to this. I hope you've managed to take away something from our discussion and the sense of how to combat stigma. I think we can all be. Guilty of having stigmatizing sort of perceptions about people and be that sort of, obvious to us or not but I think just taking a step back and thinking [00:21:00] about how you perceive other people, how you provide help to other people your views about people with disabilities in general whether that's Parkinson's or something else and how they can contribute to a community society I think would be a really useful thing to take home in the sense of building awareness of Parkinson's disease and advocating for Parkinson's and movement disorders globally. There's a lot to do to educate people about those conditions whether that's in your family, your local communities whether that's, a higher level in terms of public policy and government. So I think if you feel able to take it upon yourself to move the needle forward in the sense of building awareness of movement disorders, then please do. There are lots of ways to do that. Whether that's talking at a local group or sharing, the films that I was talking about, or whatever it might be to advocate for Parkinson's, advocate for movement disorders, particularly in places where the limited knowledge is very prevalent. And there's lots [00:22:00] that you can do to improve awareness and hopefully to combat stigma in the meantime.

[00:22:04] Dr. Sara Schaefer: Wonderful. Thank you for sharing your insights with us today. 

[00:22:08] Dr. Natasha Fothergill-Misbah: Thanks very much for having me.