Tag: light

On Being Deaf

Jessica Kirkness in her memoir, The House With All the Lights On, lets us see and hear what it is like to live with grandparents who are Deaf.   Her story covers her experience of living under the one roof with her parents and grandparents and coming to understand the “language of light”.  In the process, Jessica enlightens us about what it means to be deaf and how to interact with adults who are deaf.

Jessica’s grandfather spent a lot of time in and out of hospital.  She highlighted the problem of a lack of understanding on the part of hospital staff despite being told of her grandfather’s deafness. She maintained that his hospital care was often compromised because “staff had no clue how to interact with him”.   This was despite explicit instructions to get his attention before speaking to him, use pen and pad to enable him to understand their message and respond and ensure they actually looked at him when talking.

Jessica herself had studied Auslan (Australian Sign Language) to communicate with her grandparents, particularly with her Grandfather who refused to learn how to speak.  She even had to use sign language to communicate to him in hospital that he was dying after a cardiac arrest.  Jessica provides an enlightening  insight into sign language and its accompanying “visual and spatial tactics” generated by the hands and body movement.  She explains that movement serves to direct the viewer’s attention.

Being deaf

Jessica makes the point that, contrary to the general opinion in the community, her grandparents viewed their deafness as a “way of being in the world”, not a deficit (the focus on something missing).  They were able to recognise nuances in facial expressions and insisted that everyone faced them directly when they talked to them.  This enabled them to expertly read faces and attempt to lip read.

Jessica points out at one stage in her book about the lipreading  traps inherent in the English language.  She explains that this is the result of what is called “homophemes” – “words that sound different but involve identical movements of the speaker’s lips”.   The words themselves have different meanings, leading to confusion and stress for the lip reader.

Discrimination

Jessica quotes Rachel Kolb’s TED Talk, Navigating Deafness in a Hearing World, when she discusses the “primacy of voice” in our hearing world and the fact that “mouths are not a prerequisite for speech”.   Rachel makes the salient point that if you can’t hear, how can you learn to speak?  She was born profoundly deaf and has become a Rhodes Scholar, writer and disability advocate.

Rachel knew that her speech was defective and had to come to terms with her difference.  She spent 18 years in speech therapy to be able to talk, spending a lot of time learning speech through feeling the vibrations in the throat of her speech therapist.  Still people thought that her difference in speech was due to a foreign accent.

Jessica highlights the discrimination experienced by her grandparents in what is a “hearing world”.  People expect to be understood when they speak (“being heard”, “being listened to”).  The distortions in the speech of many deaf people lead to misunderstandings and assumptions about “lack of intelligence” or dumbness.  Jessica states that “deafness is the thing that we cannot look away from but cannot bear to face”.

The disruption and disorientation of deafness in a hearing world is not understood and sometimes feared.  People lack an appreciation that a deaf person can have a heightened sense of sight and an enhanced peripheral vision (so that actions “behind their back” can sometimes be detected and seen as derogatory).  People who are deaf often have a strong sense of touch and vibration.  As Jessica remarks, “sound is received in the body in all sorts of ways” and people who are deaf can “hear” music through vibrations in the floor.  I had personal experience of this in Melbourne when a group of us visited a school for deaf children and watched them dancing enthusiastically to music by sensing floor vibrations.

The language of light

Jessica’s Grandmother insisted that ‘the entire self is required for conversation”.  She could not tolerate people turning away from her when listening to what she had to say.  Jessica does point out, however, that the exception to this “whole-self rule” was when she was driving.  She notes too that “touch and sight were always interwoven” for her grandparents.  The world for them was “experienced through the interplay of the eyes and body”.

Consciousness of light was important because being in front of windows when communicating could create shadows that distort the images of hands and faces.  The world of deaf people is “driven by sight” where looking is equivalent to knowing.  Gerald Shea titled his book The Language of Light to express the role of light in sign language and the centrality of the visual for the deaf.  When the lights go out there is no dialogue.

Reflection

Jesscia’s book helped me to understand how easy it is to unconsciously exclude a person who is fully or partially deaf.  It reminded me that I have a friend in her eighties who is hard of hearing and I often overlook the need to face her when I talk.  She points out that being able to speak multiple languages, she has developed a propensity for lipreading – something I deprive her of when I am not facing her.  She often notes too that I “mumble”, failing to properly articulate my words which increases her sense of isolation.

By gaining an understanding of what it is like being deaf, we can learn to better include deaf people by more conscious speech and actions.  As we grow in mindfulness, we can increase our awareness of people’s differences, our own limitations and biases and be more compassionate in our interactions with others.  

Having been considerably moved by Jessica’s book, I wrote the following poem from the perspective of someone who is deaf:

Being Deaf

Being deaf is not a deficit
It’s a way of being in the world.
With refined senses of sight and touch
A reliance on light for meaning.

Face me so I can read your lips
Be in the light so I see the nuances in your facial expressions.
I am not dumb, I am deaf
I sense sound through vibrations.

While I can’t hear
I can see and feel things that you don’t notice.
My vision is not narrow
I can see my periphery clearly.

Don’t avoid me out of fear
Approach me out of curiosity.
Don’t judge me for my voice distortions
Listen intently for my message.

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Image by Ivana Tomášková from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Living in the Light of the Lessons from Death and Dying

Frank Ostaseski in an interview with Rheanna Hoffmann about death and the process of dying, mentioned his book based on his experiences of being with a thousand people as they died.  His book, The Five Invitations: Discover What Death Can Teach Us About Living Life Fully, provides five principles or guides for living life with integrity, meaningfully and in alignment with our true purpose.  Frank was the co-founder and director of a thousand-bed hospice, so his book is based on lived experiences and real stories of how people faced death, as well as the distillation of the “wisdom of death” from these deeply personal and moving experiences.

Frank maintains that death is the “silent teacher”, imparting understanding and wisdom about how we should live.  He expounds his ideas and principles in a number of recorded podcast interviews, including What Can Death Teach Us About Living Mindfully. His recoded talk at Google focused on his book through the theme, Inviting the Wisdom of Death Into Life.   A succinct explanation of the principles in his book, which he describes as “invitations to living”, is provided in his 26-minute edited interview with Steve Heilig of Palouse Mindfulness.

The five invitations to living learned from the dying

Frank emphasises that these invitations to living have been taught to him by the dying and by compassionately helping many hundreds of people with the process of dying.   Understanding the following five principles and putting them into practice enables us to live life fully and mindfully:

  1. Don’t wait – we assume that life will go on as it always has, that our health, wealth and relationships will persist into the future.  If nothing else, the Coronavirus should disabuse us of this belief and the associated perceptions.  There is a tendency to put off changing the way we live because of this belief in continuity.  However, living is precarious, nothing is certain.  We can become absorbed in the busyness of life and put off any change – avoiding the need to slow down and really experience life and relationships.  We can spend so much of the day planning our next activity or sequence of events. Frank maintains that we are reticent to fully “step into life” – “waiting for the next moment in life, we miss the present”.  Frank urges us not to wait till our death to find out the lessons of dying.
  2. Welcome everything, push nothing away – whether it’s grief, loneliness, boredom or suffering, there is a lesson to learn if we don’t push away the feelings, emotions and thoughts that pervade our life.  Frank suggests that we should welcome grief and fear and difficult feelings because these “moments” of discomfort are pivotal in our life for developing sustainable personal change, if we fully face them.  He spoke of the grief he experienced working with the dying and how he adopted meditation, bodywork (the touch of a practitioner on a source of physical pain in his body) and holding and rocking newly born babies (a life-affirming activity) as a way to face the full emotional, physical and mental experience of grief – it’s as if he ritually experienced the life cycle of birth, living and dying as a way to manage his overwhelming grief.  
  3. Bring your whole self to the experience – Frank made the point that in his work with the dying, the part of him that was most helpful was his vulnerability and helplessness because it acted as an “empathetic bridge to their experience”.  These “weaknesses” became his strengths and enabled him to be fully present to them, to be-with-them.  He has stated previously that authentic presence and compassionate listening are healing and supportive of people’s transition in both the challenges of living and of the dying process.  He asserts that none of us is perfect but that we can bring our whole self to whatever we are experiencing – leaving no part of our self out of the interaction.
  4. Find a place of rest in the middle of things – we can find a place to rest amidst the turmoil and tenuousness of life and despite overwhelming emotions that beset us.  The “place of rest” could be a breathing exercise, a ritual, mindfulness practice or reconnecting with nature.  Finding such a “place” is critical as a self-care approach for healthcare professional, particularly in these challenging times. Rheanna Hoffmann, who volunteered to work in the Emergency Department of a New York Hospital during the height of the Coronavirus, stated that this principle, explained in Franks’ book, helped her deal with the exhaustion, grief and overwhelm she experienced in helping suffering and dying patients while working under unimaginably difficult conditions. Frank also recounts the story of how he helped a woman to find a place of rest who was dying and experiencing extreme difficulty breathing, a struggle to breathe exacerbated by fear.  He asked her, “Would you like to struggle a little less?”  He then helped her to put her attention to the gap/pause in her breathing and began to pace her by breathing in and out with her.  He reports that “fear left her face” and she died peacefully.  Frank pointed out that none of the conditions had changed for her (including difficulty with breathing), only her relationship to her experience of dying.
  5. Cultivate a don’t know mind – this is not designed to encourage ignorance.  Frank quoted a Zen saying, “Ignorance is not just ‘not knowing something’ but the right thing”.  Ignorance is knowing the wrong thing and insisting on its truth and universality.  The principle is not about accumulating information (the “what”) but cultivating a mind that is “open, receptive and full of wonder” – a mind that is curious and pursues the truth and understanding in everything.  Frank suggested that we should talk with our children about death and, in the process, learn from them (not tell them).  He recounts his experience as a Director of a pre-school when he organised for the children involved to go and collect dead things in the woods nearby.  He marvels at the insight of the children and their perceptiveness.  They had been discussing the theme of endings becoming beginnings, e.g. a caterpillar becoming a butterfly, when a four-year old girl said, “I think the leaves on the trees are very, very generous – they fall and make room for new leaves”.  Frank maintains that a “don’t know mind” is fluid and flexible and “infused with a deep interest to know” and to know what is true right now.

Reflection

Frank’s approach to fully facing all that life presents (both discomfort and joy) is in alignment with Jon Kabat-Zinn’s concept of Full Catastrophe Living and Frank’s personal process for handling his grief accords with Deepak Chopra’s recommendation that we adopt a ritual to symbolise our release from the stranglehold of grief.

Frank epitomises in his life and work what he advocates through his talks and video podcasts.  He pursues a life that is meaningful and purposeful.  For example, in addition to his book and public presentations sharing his knowledge and experience of the dying process and its lessons, he has established a creative approach to educating end-of-life carers through the Metta Institute.  His words and actions manifest a life of integrity, compassion and wisdom.

Steve Heilig, the person who interviewed Frank in one of the video podcasts mentioned above, has also found a way to live a life full of meaning and purpose.  One of his many mindfulness endeavours has been to collect resources and permissions from leading mindfulness practitioners, including Jon Kabat-Zinn, to enable him to provide a free, 8-week, online course in Mindfulness-Based Stress Reduction (MBSR).

As we grow in mindfulness, by employing the five principles that Frank espouses, we can live our lives more fully and expansively and truly aligned to our energy and purpose.  We can find our expansiveness and spaciousness which Frank evidenced with people who were dying – their capacity to find the personal resources to face their fear and death despite their belief that the challenge was beyond them.   We can also become a calming presence to others who are experiencing difficulties as we progressively overcome our own reactivity. If we develop the discipline of the daily practice of meditation, we can live in the light of the lessons of dying and death.

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Image by mostafa meraji from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.