“Most people don’t listen with the intent to understand; they listen with the intent to reply.” – Stephen R. Covey. Do you agree?
To listen with the intent to understand takes a curious mind that is open for new learning they don’t yet know, and feel comfortable with not yet knowing.
I’m a social artist and art therapist and I do agree to some degree. For example, think of the masses of people who don’t engage with some art exhibitions, especially conceptual and throw comments such as, “I don’t get it,” it’s ridiculous!” It’s not Art!” Or, “I can easily make that!” Perhaps their critical responses defend them from feeling stupid, for not understanding the visual communication. They often therefore ridicule it, and project their feelings onto the product and the maker.
I think there is an element of that in every verbal conversation. I’ve had people, saying, “Oh no, that’s too deep, I don’t understand, I’m not interested.” So if people don’t think they can understand, maybe they don’t want to listen because they can’t reply.
As an Art Therapist I’ve worked with patients with secondary cancer for 9 years and the patients often explain that most of their friends disappear, because they don’t know what to say in conversation with their dying friend. They feel overwhelmed with sadness, feel helpless, hopeless and useless and this is not easy feelings to face. As a clinical practitioner, you have a team around you to support you in supporting the dying, and that helps you to continue.
The patients often say, “I avoid people now when I’m out because I don’t want to make people feel guilty. I often feel worse after sharing because I can see how uncomfortable I make someone feel, when I try and make them understand what I’m going through.”
This is not good for the patients as they are in need of talking to be understood, not to walk away feeling worse and responsible for how they think they might make someone else feel. In the end they learn to reject themselves. That internalises stigma (Self stigma), and breeds shame even further in society.
I’ve worked with mental health for 12 years and through my experience I’ve found that in this case most people don’t listen with the intent to understand, they often listen with the intent to reply with defense, and stigma attached if they even can listen at all. I think there’s so much fear around mental health due to lack of knowledge of differences. This is such a shame and shame based.
If most people could listen with the intent to understand people with mental health they would notice a lot of unique qualities and talent in people with different mindset. Or even better, if only most people could be supported to listen to understand differences, they might be less frightened of mental health and more curious in how to enhance their strength in society. Some people who have listened with the intent to understand have found this to be true. “Let’s look at what’s strong, instead of what’s wrong!”
I’ve recently begun working in paediatrics with severe chronic disease. The patients are living with physical medical conditions as well as developing mental health issues from social stigma. It takes years of attending medical attention to get their physical condition under some control. Often their mental health breaks down at the end of their physical improvement due to lack of social awareness and community support.
I believe often people don’t listen with the intent to understand, they listen with the intent to reply and often the reply holds no understanding at all which often alienates the speaker even further and excludes the intention of the subject.
I’m fortunate in Art Therapy to be able to sit in silence sometimes for the whole hour engaged in the visual dialogue with a client. With time I learn the client’s visual language, the meaning of their art materials and colour choices, their mark making, their methods of building and creating a narrative or experimental process. I see it as a dance where I learn to understand and follow the client’s movement until I feel I’m one step ahead through knowing their pattern of movements. If they want me to respond then my intention is to try because I feel something has been understood.
I agree to some degree with Stephen R Covey that, “Most people don’t listen with the intent to understand; they listen with the intent to reply.” In the context that I’ve given.
I remember a quote I heard that I try my best to live by every day, “The more we learn the less we know.”
I think most people think they have to know it all already to engage in a conversation or they might end up feeling excluded. If we stop trying to be superior in conversations and just relax and listen with replies, such as, “I didn’t know that, but that sounds really interesting, tell me more.” “I don’t know what to do to help you, but I’m here to listen if that is helpful?” Maybe then most people would drop their guard and the attention to listen to understand would grow as would empathy.
Do you know of any children with a Rheumatic disease? Do you know a child with Lupus or JIA? Can you imagine what it’s like to live with a chronic disease?
I knew very little when I began working with children on a Rheumatology ward. I had worked in cancer care, and mental health for many years as an Art Therapist and I had found that both patient groups had to face social stigmas and taboos on top of what they already struggled with. Whilst cancer patients and mental health conditions are still stigmatised, in society, there is more community awareness and support in place than I have found for a child with a rheumatic disease.
Since 2015 I have worked with children and families living a constant merry-go-round of appointments, four-hour intravenous infusions and strong medication such as the chemotherapy drug Methotrexate. These types of drugs and treatments help to keep the disease under control but come with side effects such as nausea, vomiting, diarrhoea, fatigue and headaches.
Chronic illness can be very hidden. Having a chronic condition and being different from the general population subjects a person to possible stigma by those who do not have the illness. Coping with stigma involves a variety of strategies including whether to disclose the condition or not. Many conceal aspects of their condition and keep quiet out of fear of suffering further exclusion from the public. Parents are often viewed as being fussy and over-protective, as often nothing appears to be wrong with their child. Some children are even called liars by their peers at school when they have tried to talk about their struggles. They are told they are making the condition up, because the other school children cannot see anything wrong with them, and they are jealous for the time they get to have off school. The schools phone up the hospitals to check their hospital attendance as it affects their school attendance stats, and this reinforces the perceived stigma of being a liar. Whilst the doctors and nurses who care for these children understand and care deeply about these hidden illnesses, society as a whole does not always understand or care, and this is what needs to change.
A child with Lupus will never be cured and will have ill health their whole life. Still, there is very little empathy and sometimes no community support at all. Most people do not even know what Lupus is, or that a child can have the disease. I have found through listening to many children with a Paediatric Rheumatic Disease that to suffer alone can be a very frightening place to be in. Stigmas often become internalised, which in turn can become feelings the child and family also feel about themselves (self-stigma). This is a separate battle in itself alongside the actual medical battle. They often feel confused, misunderstood, shamed and ashamed. The expectation of discrimination prevents people from talking about their experiences and can stop them from seeking help.
I often hear families speak about how some schools don’t understand children’s rheumatology at all. Many schools put pressure on the children and their families by judging the effect their missed attendance has on their school. This is felt as unfair and discriminating. When a child with an autoimmune disease (e.g JIA and Lupus), has their illness under control they often look well and feel well. Some schools do not seem to understand that they look well and feel well because they keep up with their regular treatment at the hospital, and need support from their schools to keep doing so!
I think it’s important to communicate to the schools that if they do not keep up with their treatment it can become a safeguarding issue because their illness progresses and the damage cannot be retracted, such as poor sight or even blindness. When their treatment is not working the illness often disables the child which can lead to poor mobility or even leave the child wheelchair bound. Their joints or other parts cease to function and their pain is unmanageable. Inflammation can “eat into” bones, causing damaged areas, or erosions, where the bone wears out.
Some schools do understand and can support the children’s psycho-social needs. An example is when the children cannot sit on the floor during the schools special ‘carpet time’, the schools accommodate other children to sit on chairs on the carpet too so the children effected by chronic diseases do not feel singled out. When they cannot join in with sports day, the schools do not exclude by asking them to just sit and watch. They instead plan other responsibilities to make the children feel valued and included. These are small gestures with a huge positive impact on children’s emotional wellbeing when forming their social identity.
Often, children share their psychosocial needs by portraying important feelings in their artwork. Common themes are often hidden sadness, fear, anxiety, danger, battles, desires, happiness, hope, belonging and body image. Their stories get communicated through what they are making and sometimes they are noticing similar themes in the artwork made by the other children. This can make them feel connected, understood, supported and has led to children opening up for the very first time about their disease.
The medication they take such as Steroids often causes mood change and excessive body weight. This side effect can be very difficult for the child, family, friends and school to adjust to as they do not recognise the physical change or behaviour and struggle to accept it.
Themes such as being bullied, despair and suicidal thoughts have often emerged in the Art Therapy groups around changed body image and self-identity. Through support in expressing creatively and confiding their confused feelings with someone the children soon feel better, even if their medical condition does not get better. Sharing seems to take some of the shame away from their self-image and the aliens and monsters they often draw turn into superheroes and princesses.
ART THERAPISTS AS INTERMEDIARIES FOR SOCIAL CHANGE
The Teapot Trust‘s aim is to reach every children’s hospital through art therapy so that the NHS and the community at large will recognise the need to help young people with conditions that are often hidden to the public eye. The Teapot Trust Founder and CEO Dr Laura Young MBE says, “there is a whole mindset to change but it is getting there slowly one step at a time through raising awareness.”
Through the Teapot Trust I am fortunate, together with many other Art Therapists who they also fund, in providing Art Therapy in hospitals to children with chronic illness. Art Therapy can help the child by reducing anxiety and can build resilience to their medical condition, as well as working through their psychosocial needs. It also holds potential to help grow empathy in the wider community, which I feel extremely passionate about.
Yes, now I know many children with a Rheumatic disease, children with Lupus and JIA and other autoimmune diseases. Now I can imagine more what it is like to live with a chronic disease and my empathy for these children and families has developed.
Compassion is said to induce positive feelings in people and humans are innately wired to want to help the suffering, but they must first feel that the struggles the person has are serious enough to help. When the child and their family do not feel able to show and tell their community of their struggles and the public is unaware of their condition, it is difficult to make positive changes as the public do not know the seriousness of their paediatric rheumatic disease.
If it is possible that Art Therapy and Response Art (artwork made by Art Therapists in response to their patient’s Art Therapy) can help open up valuable communication pathways, I will do my very best to try and give society an insight into how it feels to be a child living with a disease invisible to most of the public eye.
To stop stigma is to grow empathy and that starts with being willing to imagine what it is like to be that child, to be that family and to live their life. Stories, pictures and objects are full of emotionally laden materials that can be a catalyst for installing compassion in our community and change people’s mindset.
Artwork can show what’s often hidden and can touch people’s hearts, so please do Art and share whenever you can.