Challenging Invisible Disability Bias

Dr. Amrita Sen Mukherjee, an FMLM Associate Fellow, shares her TEDx talk, titled ‘Invisible Disability: Challenging bias to enable change’. Amrita explains the primary motivation behind this talk was to shed light on experiences that many individuals may encounter, aiming to provide insights not only for those in the medical field but also for society at large. 

The talk delves into broader reflections on how we interact and treat one another, transcending the boundaries of the doctor-patient relationship. She believes the lessons shared in the talk have implications for various aspects of our lives and can contribute to fostering a more compassionate and understanding society. 

Below, Amrtia talks more about her experience. 

Firstly, as a new FMLM Associate, can you tell us in one sentence what good clinical leadership means to you?

“One sentence? That’s hard…!!! To me, the most important aspect of good clinical leadership is understanding what it really means to have a truly inclusive environment and then fostering a culture where individuals (both staff and patients) feel seen, heard, and supported.” 

In your TEDxTalk you explore your experiences of feeling unseen and unheard as both a patient and a professional, through your journey towards a diagnosis of temporal lobe epilepsy. Tell us about the talk and the reactions that you’ve had to it since.

“I knew that my story had to be shared – there had to be a reason that I had experienced the hardships I had faced. I knew that I need to share my story to help others, but it took me a long time to get to the point of where I felt comfortable in delivering my TEDx talk.  I have been amazed by the responses that I have received – it’s been incredible. It is truly heartening to have received such an outpouring of support from people, both familiar faces and those I have not met. I have become acquainted with so many people who have expressed how my talk resonated with their own experiences and from whom I have had the privilege to learn of their own stories. Knowing that my talk has resonated with others, that it provided comfort and validation to those who have felt similarly marginalised, has left me humbled and grateful. It reinforces the importance of sharing our stories and shedding light on issues that are often overlooked or misunderstood to foster greater understanding and empathy within our communities. The world of medicine, like any other, has its shadow side, and hearing stories such as mine is crucial for progress and healing. As mentioned, it took time for me to gain the strength and courage to become comfortable with sharing my story, but I knew it was necessary.” 

What you have experienced sounds awful. How can or should colleagues support someone with a hidden disability?

“There are so many things that one can do.

Be human: Treat someone how you would like to be treated. If you were in their shoes, how do you think you would feel? What do you think you would need? Try to offer that.

Be curious: Quite simply – ask the question. ‘How would you like me to support you?’. That’s a good place to start. Be prepared to listen, to be kind in your curiosity and maintain a non-judgmental attitude.

Be brave: be prepared to advocate for your colleague and be brave enough to challenge those who are acting in an unprofessional manner.”

Before you experienced it yourself, had you ever noticed the kind of attitudes your colleagues took towards your hidden disability?

“To be honest, it would be difficult not to notice it. When you have been privy to conversations that are marked by unkindness and discrimination, and have witnessed unprofessional conduct within doctor circles, your own awareness of mindsets and perspectives towards illness and disability is heightened.” 

You mention that 16% of the population have a hidden disability, but given the barriers patients – including yourself – have faced in being believed, do you think this could be an underestimate?

“Absolutely, the reported statistic of 16% of the population having a hidden disability likely underestimates the true prevalence. Many individuals may not recognise or acknowledge that they meet the criteria for having an invisible disability, leading to underreporting. In addition to this, quite often people feel a sense of guilt, stigma, or shame associated with having an invisible disability. The impact of this is huge as this can discourage individuals from disclosing their condition. People may be concerned about disclosing a hidden disability because of the potential professional or personal repercussions that may ensue. The reported figure offers us valuable insight, but we must be aware that there are likely many more individuals living with invisible disabilities who remain unseen and unheard.” 

Has your diagnosis changed your approach to the way you work with patients?

“100%. It’s not just my diagnosis that has done this – it’s a whole catalogue and series of experiences…examples include:

1. my experience of the lack of compassion my family witnessed and were treated with when watching my father’s premature health decline and ultimate passing in a system that he loved and worked so hard for.

2. my experience of being a woman in labour and the vulnerability you are exposed to at that time.

3. Being an advocate for my mother, sister, and son (all for different reasons) because their voices were not heard when they needed compassion from the healthcare professionals treating them.

4. Advocating for a close relative because of their neurodivergent characteristics.

“There is a system-wide decline in the recognition of the importance of the ‘human’ touch, the bedside manner that is so important in distinguishing between a good clinician from a great doctor… 

 ”Lived experience changes one’s entire viewpoint, the lens from which you view the world and the perspectives that you develop. I would say that the palpable and real understanding of the vulnerability, fears and hopes that are experienced when one becomes a patient means that without a doubt you are able to work with patients in a more compassionate, empathic, and authentic manner.” 

What should clinical leaders be doing to challenge bias around invisible disability?

“Clinical leaders at the very least need to be role-modelling good behaviour and that includes calling out indirect and direct discrimination. Part of understanding the bias that exists, is learning how to listen to the silence. Other ways include promoting awareness, advocating for inclusive policies and practices, and fostering a culture of empathy and support within healthcare settings. This involves what are seemingly simple measures such as educating staff, implementing accommodations, and creating safe spaces for individuals to disclose their invisible disabilities without fear of judgment or discrimination. Easy to say, less easy to implement.” 

Would better leadership training help?

“Yes, certainly better leadership training would help in addressing bias by equipping clinical leaders with the knowledge, skills, and awareness necessary to effectively support and advocate for those with invisible disabilities. More to the point, real people and real experiences need to be heard and used in affecting change. You can’t truly become inclusive and understand the experiences of individuals with invisible disabilities if you do not offer them a seat at the table.” 

You talk about healthcare working with many frameworks about important issues such as equality and diversity, but that there is a gap in terms of hidden disability. How can the healthcare sector do better?

“The healthcare sector can do better by actively integrating awareness and education about hidden disabilities into existing frameworks for equality and diversity. This involves acknowledging the unique challenges faced by individuals with hidden disabilities, incorporating their perspectives into policy development and decision-making processes, and ensuring that healthcare professionals receive training on how to recognise, accommodate, and support individuals with hidden disabilities effectively. Additionally, healthcare organisations can implement measures to create more inclusive environments where individuals feel comfortable disclosing their hidden disabilities and seeking the necessary support without fear of stigma or discrimination.” 

Finally, if someone is experiencing this stigma, what would you say to them? What should they do?

“I would say: “You are not alone. Be kind to yourself and offer yourself the self-compassion that you deserve. If you are the victim of stigmatisation – it is not your fault. Please find someone you trust who will listen to you, help you, and who will walk the journey with you.”

 ”If you are unable to find someone you know, there are many sources of support such as your indemnity provider, Doctors in Distress, the Practitioner Health Programme, Professional Support Unit, Samaritans, a GP, Occupational Health, or of course… me!”

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