Talking about invisible disabilities: underrepresentation, stigma and how we can do better

We are joined by two consultant psychiatrists, Dr Ken Courtenay and Dr Eleanor Brewster to discuss the International Day of Persons with Disabilities. Ken and Eleanor consider what we can do as a society to create a world that is more beneficial for people living with visible and invisible disabilities.

Transcript

Ella Marchant: Hello and welcome to the Royal College of Psychiatrists podcast with me, Ella Marchant. The 3rd of December marks the International Day of Persons with Disabilities, a day which has been globally recognized since 1992 and was established by the United Nations. This day brings focus to both visible and invisible disabilities. The disabilities are not immediately apparent, such as autism and Asperger's.

Psychiatry, of course, has a huge role in intellectual disability, which is a specialty many psychiatrists choose to go into. Two of which we have speaking today, Dr Ken Courtenay and Dr Eleanor Brewster. Dr Ken is a consultant psychiatrist in intellectual disability. Dr Eleanor is a consultant psychiatrist in learning disabilities. We discuss the importance of family for people with disabilities, what we can do as a society to better educate ourselves, and the under-representation of people with disabilities in TV and film.

Dr Ken Courtenay: Working with people with intellectual disabilities, I've always enjoyed it. There's such variety in the work. From a personal point of view, you get a lot of satisfaction out of considering what the biological factors are involved in someone's difficulties, and then also looking at the social and the psychological aspects of their lives. Sometimes we forget about the psychological experiences people have and how they contribute to their mental disorders, but these are really important. As a doctor, you understand the physical health problems that can result in people having mental disorders.

By bringing all of these together, using your knowledge, and pulling all the various factors together to try and solve a problem can be very satisfying, but it's also very challenging too. Oftentimes you're not really too sure what the problem is, first of all, and also not really too sure what the solution should be. I think as well, the great thing about it is the complexity that people present with, so there isn't just one solution but many aspects to a solution. I find it very satisfying working with people with ID because they can be very straightforward, and they can tell you precisely what they think both of you and about other things as well. I find that very refreshing.

Also, communication is a big aspect to it as well. You have to be very plain and honest with people, and not concealing things from people as well but being very sensitive around their needs and how they communicate with each other too. Working with families is very important to me because you're not just dealing with an important person, you're dealing with a person who lives in a system, lives in a family unit. They are all affected by whatever is happening to this person. Overall, I just find it really satisfying, both professionally but also on a personal level as well.

Ella: You mentioned quite a lot there working with families. Is that something that you feel happens more in intellectual disabilities than it would in another discipline of psychiatry?

Ken: I agree. To be honest, I think the other discipline that comes close to it would be working with children, so child and adolescent mental health services. You really do have to work with the families when you're working with adolescents and young children. Especially in intellectual disability, you really cannot progress unless you are working with the families. Even when you're supporting an adult who has a good level of independence, you're always reminded that the family is in the background. Not everybody, unfortunately, has a family who they can turn to. This is another aspect of this role of services, is really providing that support to the person.

I've always endeavored to make connections with the families and get to know what is going on in the background, because we as psychiatrists might only see people for a few hours in a month even trying to understand what is happening with them, and yet the people that are in the background in their own social networks are very important to them. Especially if you're trying to support someone who is finding it difficult to accept treatment. It can be very helpful being able to explain what you want to do to families to help them to understand what you're trying to achieve. I like to think that my aspiration is always to get people to perform to the best of their potential.

For me, this is very, very important because often people with ID, they're not expected to achieve very much. They're not expected to do very much in life, and I think this is the wrong approach and it can be quite tragic as well. We should be looking to actually support people and get the most out of people so that they will live more fulfilling lives.

Ella: Absolutely. I couldn't agree more. Anyone with an intellectual disability can achieve a huge amount in their lifetime as well. Eleanor, can we please hear from you next on a little bit about your background and what drew you to work in intellectual disabilities?

Dr Eleanor Brewster: My name is Eleanor Brewster, and I'm a consultant in the psychiatry of learning disabilities. I've been working with people with intellectual disabilities for about 20 years now. I'm the chair of the ID Faculty for the Royal College of Psychiatrists in Scotland. In my clinical practice, I work with people with intellectual disabilities in both inpatient community settings and working with people who've got coexisting mental health problems, autism challenging behavior, and forensic issues.

I was first drawn to the specialty when I was lucky enough as a trainee to be given an intellectual disabilities placement. It wasn't a specialty I'd had exposure to before that point, but I found that I really, really enjoyed it. I very much enjoy working with people with intellectual disabilities. I also really enjoy working with staff teams as well. I find that staff working with this group tend to be very patient-centered and solution-focused, and I've benefited from having some really inspirational colleagues over the years.

I feel that people with intellectual disabilities face many inequalities and complex difficulties, and I find it really rewarding to be part of that journey with people, and hopefully to help in tackling some of those complexities with them, working with patients, the families, and the other people who are involved with them.

Ella: Thank you so much. Echoing what Ken said, is working with the family something that's important to you?

Eleanor: Definitely. It's so important to make sure that you work with people's families because they know the person the best. They know what the person would want and they know how to communicate with them in the best way. If there's any difficulty in communicating you can ask the family to help with that. If you can get them on board they can be a part of that team, obviously, in working with the person and helping them get the best outcomes, so they're vitally important to the whole exercise.

Ella: Of course, because that family have a lot more experience of their day-to-day life.

Eleanor: Yes. They know them over a long period of time so they're more able to detect a difference as well. If you meet somebody who's being referred to you for the first time and maybe you don't have a longitudinal knowledge of the person, then you might not know what they're like when they're at their best or when they're well if they've been referred to you because they've become mentally ill. Having someone who has that long-term picture and who knows what the person is like when they're at a good level is really important.

Ella: Perfect. Thank you so much. Moving onto the next question. The theme of this year's International Day of Disabled Persons is not all disabilities are visible. As a society, what can we do to better understand and accommodate it?

Eleanor: Awareness is key to understanding that not all disabilities are visible. Because of the often invisible nature of intellectual disabilities and autism, it can be harder for people in the population generally to be alert to the type of difficulties that somebody might be facing. That's true of anybody, isn't it? We never really know what other people are dealing with. Everybody will have interacted with someone with an intellectual disability at some time or another, but might not realize that or might not have conceptualized it in that way. I think the more that as a society we can ensure that people with intellectual disabilities are truly valued and seen as being equally entitled as others to education, housing, healthcare, and social opportunities, then the more those barriers will hopefully break down.

Ella: Thank you so much. Ken, could we hear next from you on what we can do as a society to better understand and accommodate the fact that not all disabilities are visible?

Ken: Indeed they're not all visible, and the ones that come to mind are autism, epilepsy, ADHD, and intellectual disabilities too. We need to be more accepting of people. Knowledge about the disability is also important. This is why awareness around autism has been very helpful so that people are beginning to realize that in fact, the person that you see might appear just like you and I but there are other things going on with their lives and affecting them that will inhibit them in some ways in functioning. How they could be doing it. How we could actually help society is being a lot more open about it and being able to talk about people's disabilities. This is perhaps a challenge for both people who have a disability and people who don't, is actually to be just more open to talking about the difficulties of having a disability. Also, we need to be aware of unconscious biases that we have towards people who are different, particularly where the disability is invisible to us. We have laws in place to protect people in society like the Equality Act, for example, in England. The laws are one thing. Actually changing attitudes and culture is quite another challenge to everyone, and we really need to work on that.

The other thing, of course, is that we need to be looking at people in the round and in terms of their strength rather than taking a model which concentrates on people's weaknesses, people's deficits. This is what we sometimes find in clinical practice, of people telling you all the things that a person who has a disability cannot do, and not actually telling you what they can achieve and what they can contribute to the community. I would like to see us having a more positive, rounded attitude towards people, and valuing what they can contribute and what they can do not just for themselves but for everyone in the wider community.

Ella: Ken, what do you wish that people understood, just in general, more about disability? What do you think is holding us back so much?

Ken: I think it's our fear of difference. It's easy for us to stigmatize people because of our own anxiety around what that disability, that defect, might have on us. We need to be a lot more mature in our attitudes and in our thinking as well. To certainly recognize and accept people as human beings, as full human beings, who have a life to live like the rest of us. These attitudes need to be challenged and they need to change. The way we can do it is early on, which is through the education process and through families as well because often people's opinions and attitudes are formed within the family which they have grown up and within the social network.

If groups of people are being stigmatized it's easy then to actually carry that on as a member of the group, which is unfortunate because other people suffer because of those negative attitudes that people hold.

Ella: Eleanor, just going on what Ken said, why do you think that people are still so scared of someone who is different to them in some way, or why do you think we create a sense of otherness with disability?

Eleanor: People are frightened of difference, worried of it, and also people are apprehensive about feeling that they don't know the best way to approach somebody or the best way to communicate with them. If they're not familiar with or know that they've had interactions with people with intellectual disability in the past, they might have this fear of not approaching them in the right way or doing something that might scare them or frighten them or that might trigger some difficulty for the person. There's a kind of apprehension around that for people.

That's why exposure is so important. If people with intellectual disabilities are truly part of society, interacting meaningfully within that, then that level of fear and uncertainty should be less.

Ella: Thank you for that. Moving on to the next question, which is building on what we've already said, do you feel there is enough education in schools and in the home to destigmatize disability, and in particular intellectual disabilities?

Eleanor: There's two parts to that. One is education in the sense of speaking to people in schools and speaking to people and telling them about disability and about the nature of intellectual disability. What that might mean for the person, what that might be like for them, and what their needs might be. The other part is exposure to people with those disabilities, difficulties themselves. If people are encountering them day in, day out, then they are more likely to have that knowledge without being explicitly taught it. I think both things are important; the education itself, but also the education that comes naturally from being exposed to people with intellectual disabilities.

Ella: Thank you so much for that, Eleanor. Ken, do you feel there is enough education in schools and in the home to destigmatize disability, and in particular intellectual disabilities?

Ken: It is better now than it was, particularly when I was younger and growing up. Of course, we have the legislation in place, the Disability Discrimination Act and the Equality Act, to support and protect people's rights as well. Are we doing enough? I don't think we will ever do enough. We will always need to do more because times change, and generations change as well. With each new generation, the education has to take place, the information around disability has to be repeated. Within family units, I said earlier, it is important that parents imbue their children with the right attitudes, and if they don't possess them themselves it can be very difficult to make a difference within society.

One of the good things I have noticed over the last couple of years is the profile of people with disabilities in the media. Your advertising campaigns that include people with disabilities, I believe, are very positive. I know that they have used people with visible disabilities such as Down syndrome in their ads, but in fact, it's a good method of actually educating people generally. The media could move one step forward in looking at people with invisible disabilities and how we can understand difference a lot more easily, and maybe it becoming less invisible and a bit more visible to society.

There is a problem in that social media can be very good and it can help people a lot, but I think it can also be quite damaging to people, especially people who are different.

Ella: Do you think that there's enough representation on television or do you think that's something that's just started recently to emerge? I feel like in the past 10 years it's developed enormously, but still, people with disabilities are still very underrepresented.

Ken: Very much so. You're right, it has happened more recently. I'm not sure about 10 years. Perhaps you're going back to such films as Rain Man that portrayed a man with autism. More recently there has been more visibility, not just in media, but also in sports as well, and you look at the Special Olympics that has had more coverage. This is where people are actually being celebrated for who they are and for what they can do, going back to what I was saying earlier about people's strengths, which is very important.

I think we need to be looking at people's differences and celebrating them rather than stigmatizing people because of a difference, but very much acknowledging and celebrating them. Looking again at people, we need to be looking at people as a sum of all their parts that is, rather than concentrating on one particular aspect of them, because one part does not define their personality, doesn't define who they are. This is what the disability movements are saying, is how they want to be defined, and they do not want to be defined specifically by their disability. They want to be accepted as people who actually have another aspect to their character, whether it is autism, whether it is an intellectual disability as well.

I do feel that we have quite a bit to do. Going back to what I mentioned about social media, social media can be very good. However, it can also be used as a weapon. What I mean by this is where people are being bullied on social media. Bullying can happen in schools but it can also happen outside the schools, and in society generally. We really need to watch our behavior. Anyone who is engaging in such behavior, it needs to be called out as I say, and it needs to be highlighted. People really shouldn't be allowed to stigmatize people to accentuate some difference from other people or to criticize it. This is just not acceptable. As I said earlier, celebrating differences is very important and we need to a lot more of it in society.

Ella: I absolutely could not agree. Eleanor, do you feel like people with invisible disabilities are in any way represented in film and TV? What is your perspective on that?

Eleanor: That has been changing. I think there is more representation now but there could be a lot more done. Especially with people with intellectual disabilities, autism, other mental health conditions being present not simply to make the point of being somebody there with that condition, but just naturalistically happening to have that condition, if that makes sense. Not to make a plot point or not for any specific purpose in that respect, but just because they happen to be there. There's sometimes a real lack of that kind of representation, and I think that's really important.

Ella: Absolutely. In what way has COVID-19 impacted the mental health of people with disabilities? Eleanor, can we hear from you first, please?

Eleanor: I work with people with intellectual disabilities who are inpatients and also who live in care homes, and I've seen how difficult the COVID pandemic has been for them. The disruption to family visits has been huge. The loss of social encounters in a group who may already have quite small social circles, and the loss of normal routine for them and not being able to go out and do the activities in the community that they would normally enjoy and rely on to give them structure. We know also the COVID has caused isolation and poverty for many, many people. People with intellectual disabilities are in many ways more vulnerable to those types of problem than others.

Many types of encounter health education have moved online at this time. People with intellectual disabilities might struggle to use those technologies or might not even have access to the internet at all, and therefore not be able to access those things at all. With health care, there's many encounters that would have been face-to-face that have been suspended now, made less frequent or just canceled, and that can make it harder to detect if someone's struggling, if they're becoming unwell, if they're having some symptoms but maybe not able to demonstrate them in a brief encounter or in a non-face-to-face encounter. That can result in them having delayed medical treatment.

Also, many day services and day centers had closed in the first lockdown and some still suspended. There's, again, a loss of structure and a loss of routine meaningful activity and social contacts outside the home for people with that. Another thing that I think is important to think about is mask-wearing. It's obviously really, really important for everybody, especially given that people with intellectual disabilities are medically vulnerable, so really important to protect people in that way, but it can make communication harder because you can't see facial expressions so much. I think we need to be really aware to use gestures, to be more expressive, to use other aids to communicate.

I know also that some of my patients have worried that I'm wearing a mask and maintaining social distance because I'm worried that I'm going to catch COVID from them. I always make sure to explain that's not what I'm doing. I'm taking these precautions to protect them and to make sure I don't infect them. We know also there's been some deaths of people with intellectual disability from coronavirus itself, many deaths, and we know that people with intellectual disabilities have got more medical vulnerabilities than some other population groups. There's a recent report from Public Health England that estimated that people with intellectual disabilities are more than three times as likely to die from COVID than other population groups.

There's many layers of disadvantage here for people with intellectual disabilities. There's effects of COVID itself, but also the secondary effects, social, financial, the access to treatment for other conditions, and the risk of mental health conditions developing from all those disadvantages.

Ella: Thank you so much for that. Ken, can you pick up on anything that Eleanor has said? Is anything that she's saying true in your line of work as well?

Ken: Oh, everything. Every word she's spoken is very relevant around the country, not just in one particular area. The great tragedy of COVID, of course, is the level of death rates among people with intellectual disabilities. It's slowly being revealed how it is affecting this population. Initially, we understood how it was affecting people in nursing homes, care homes of the elderly, that is, but again, it was a hidden population. People weren't really tapping into it. It's only now that we're beginning to learn about the impact that it's having on [unintelligible 00:25:15] . It's shockingly high the death rate among this group of people. We need to be aware of it and we need to be protecting people.

As Eleanor says, she wears a mask for a very good reason. It's just to protect people's health. It's so important that we communicate that message to the families and also people with intellectual disabilities too. In terms of the impact it's having on people's mental health, a lot of it that I've seen is down to the isolation and the usual structures and routines being lost, being withdrawn. Especially if people have a day service in their local area or a club that is regularly open and that no longer exists, a person's meaning for life might also be diminished because of it. Especially if you don't understand why things are being done and you can't articulate how you're feeling about it, that can have a real knock-on effect and a real impact on your mental health, leading to more anxiety or low mood.

We saw quite a bit of this during the lockdown. It doesn't just affect the person. It also has a big impact on their support network, whether they're living in a supported living environment or living with a family. Families have lost out as well because of their caring obligations towards their adult child, for example, with an intellectual disability, and how to keep them going during a very difficult time, which is affecting all of us. A lot of demands have been placed on all of us, but I think they are even greater if you have an intellectual disability. Especially if you don't fully understand why things have changed and why you can't do things like you used to do, and as I said, communicating how you're feeling. Overall, COVID has had a huge impact on the lives of people with intellectual disabilities.

Ella: Eleanor as well, before you talked about the stopping of family visits or the difficulty that family have visiting people with intellectual disabilities. The importance of family is something that we've talked about throughout this interview. What could potentially be put in place so that families can still visit?

Eleanor: One of the really important things about this has been that it's not just about the protections that we try to put in place for our patients, but also that a lot of the families are really, really concerned. We could do our best to try and make reasonable adjustments to make sure that the person could have a family visit in whatever way possible. For example, meeting in an outside space, maintaining social distance, but with a lot of my patients, I found that their families don't want to expose them to that. They're worried that that would be more distressing for them than not visiting at all. Even when you do your best to try to get past these difficulties, they can still remain in a very real sense for the people.

Ella: Ken, what do you feel could be done differently during COVID to increase the, what we talked about earlier, social circles? What do you think could be done during COVID to make sure that people with intellectual disabilities, people with invisible disabilities, still get social contact and contact with their families?

Ken: We need to be a lot more creative around the whole issue, and concentrating on the connections, the social networks that people have. We're using technology, which is very useful. As Eleanor said, not everybody has access to it. We should be facilitating people's access and empowering them to actually use the new technology. Teaching people with intellectual disabilities how to use laptops, how to use Zoom, would be very beneficial to them, but also raising the level of connection that people have. Sometimes the barrier is not necessarily the person with the ID but those around them. The families and the support workers as well who, again, may not be terribly educated in using technology. We need to be helping people to make those connections because this is how things are going to go in the future.

Once COVID has passed through we're not going to go back to how things were 100%, so we will be using these tools. Everyone, support workers, families, and people with ID need to be helped to use them more productively for them. It's one thing having a screen relationship with someone, and it's quite different from actually having an in-person relationship with each other. This is something that we can't lose sight of. Eleanor highlighted that to you, where it says families do want to connect with people, they do want to see people, but they have the fear that they could actually endanger their lives. We need to think around it a lot more.

Where I'm working at the moment, one thing that was actually very useful was having organized walks for family members, sometimes with staff as well, to support people and be able to maintain that level of social distancing. For people to actually engage in a joint activity can be very beneficial to everybody.

One thing I did want to remind people that has happened during COVID, is because of the impact of COVID on people's mental health, services have been using more medication than they were. Of course, the thrust of our practice over the years has been to reduce reliance on medication, what we call psychotropic medication, to help people with how they're feeling and with their behavior as well. We have been trying very valiantly over the years to actually reduce the reliance on this, and we've had quite a bit of success. Unfortunately with COVID, we found that families and carers are asking for more medication to help people with intellectual disabilities.

This is one of the unfortunate consequences of it, partly because the usual structures are not there. The usual sources of support that people get through either psychology, others through social care support, or even nursing support isn't there, and now it's being substituted with medication. I certainly hope that once we're through the pandemic that this will change, and we will move forward and we'll not be relying so much on medication to support people.

Ella: That's quite surprising. I didn't actually know that. Who decides that medication is going to be increased?

Ken: Well, it should be a joint decision between the prescriber, who's often the psychiatrist or the GP, and the carers and the person with an intellectual disability, if they have the mental capacity to understand the issues. Colleagues have said to me that they have tried to resist it, whether it's increasing a dose of medication or introducing a new drug, and yet you have families and support workers coming back to you and saying, "We really need something. The person's very, very distressed." It might be a reaction to a new diagnosis, but oftentimes it's just a current diagnosis just becoming worse.

Colleagues have reluctantly prescribed medication, and extra medication as well, because what can they do? This person is terribly distressed. Also, the fact that their placement, where they're living, whether it's with a family or in an independent basement, could be at risk of breaking down. The person could end up going into an inpatient service, into a hospital, and that is not what we want to happen. Simply because they weren't able to be supported in the community

Ella: That was Dr Ken Courtenay and Dr Eleanor Brewster joining RCPsych, the International Day of Persons with Disabilities. A huge thank you to both of them for taking the time to speak with us. If you would like more information about a career in intellectual disabilities, please go to our website and select Become a psychiatrist. Thank you for listening.