ENTER
CREATIVE CONSULTANCY X EXPERIENCE DESIGN
EXPLORING HUMAN AND MORE-THAN-HUMAN IMAGINATION AT THE INTERSECTION OF ART AND TECHNOLOGY
BY ANETTE LUNDEBYE
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Anette Lundebye is an artist, designer, researcher, educator and coach.
BY ANETTE LUNDEBYE
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Anette Lundebye is an artist, designer, researcher, educator and coach.
BY ANETTE LUNDEBYE
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Anette Lundebye is an artist, designer, researcher, educator and coach.
BY ANETTE LUNDEBYE
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Eight months after my brother passed away suddenly from a congenital heart condition, I started to embroider things that reminded me of him. Stitching became a slow ritual of processing grief and recalling memories. His shirt fabrics became mnemonic devices to explore the associative and often fragmented way memory works. As the icons took shape, words formed to capture brief anecdotes, resulting in written narratives as episodic stories that connect to tell a whole life. By addressing siblingship, disability, identity, masculinity, and belonging, this book takes an intimate and challenging look at ableism in contemporary society.
This work was shaped through my process of loss, grieving and remembering. At first, I had no conscious intention to create anything at all. After my brother died on the 21st of June 2019, I was bewildered by the thought that I would never be able to experience anything together with him alive again. The pain of his loss was numbing. Yet as months passed, I realised that I needed to find ways to spend time with him. As an artist, I tend to materialise experiences of perceptions and life through some form of tangible expression, both as a method to process and to document.
With Alexander’s death his home transformed into an estate. During the weeks I spent in his flat sorting out his belongings, I left his shirts in the cupboard as the last things to tidy. It was heartbreaking to look at all these beautiful shirts in cotton fabrics hanging there and to know that they would never be used again because they were tailor-made for him. Only he could wear them because of the uneven length of his arms. The pain of seeing them made me want to scream. I wanted to keep them but knew this would be cumbersome. In a drawer I found a stack of fabrics made as pocket handkerchiefs that corresponded to the same fabrics the shirts were made of. I knew I needed to keep these, as proxies for the shirts. I kept them as mnemonic devices and for when the urge to make something would arise.
Eight months after his passing, and having spent one month in Mexico, I felt the urge to embroider on his shirt fabrics. I was inspired by various kinds of embroidery seen on my travels, especially some delicately stitched hummingbirds on napkins, which were like small poems that reminded me of the beautiful birds I saw drinking at a fountain in Oaxaca. I was reminded how much I liked stitching, and how embroidery is in many ways similar to drawing, yet more tactile.
The tactility of embroidering was soothing to my grief. Feeling the reliefs on the surface made by thread was a comforting sensation that I had experienced over many years every night throughout my childhood. I had a small flat square pillow that I slept on. The pillowcase was white with a lacy type of embroidery called white-work or Broderie Anglaise. To lull myself to sleep I would stroke the soft embroideries with the back of my hand and fingers.
When embroidering, I realised that this was a ritual where I could, stitch by stitch, spend time with my fleeting memories, some more hazy than others. The slow, repetitive and meditative gesture allowed my memories to emerge in a gentle way. Recalling his passion for ball games, I started stitching a tennis ball, a football, then a golf ball. Gradually a range of icons were distilled – each symbol prompting strings of memories. Some were recent and familiar; some had not surfaced for a long while; and some had been lodged as events but never manifested as a memory until now.
I took care to make the embroideries neat and defined. Unlike memories, they are very realistic and legible. However, each piece has its backside where messy threads are shown. The stitches there are less controlled because they are not made to be seen and are mere traces of the stitching action and function. I have pondered that perhaps memory is more akin to the backside, with its irregularities, than the frontside? Nevertheless, these embroideries are distilled from a wish to materialise and make tangible the irrevocable and disappearing moments that can only be accessed through memory and imagination.
Loss creates a void that needs to be tended. Imagine a landscape of solid ground where suddenly, a piece of land implodes, opening up a hole of nothingness in the ground. It is perplexing. In the early days after his passing, I noticed how my mind kept to its habitual tracks through my familiar landscape of our sibling relationship. Remembering became brutal. Each time the tracks led to this nonsensical void, the shock of facing the void was retriggered. The sensations of losing him felt like losing parts of myself – a kind of dismembering. For a while the disconcerting process of remembering and dismembering seemed to happen simultaneously.
When I embroidered, I started to notice how the familiar tracks were changing course through the void, leading to new peaks and valleys of feeling and remembering. I noticed how the need to remember became not only a way to summon his presence, but a way to defy the fear of forgetting him. Naturally the memories of him became a way of remembering myself, of us, shaping cairns in the shifting landscape. This active remembering urged me also to write to connect further with him.
They say that the sibling relationship is potentially the longest relationship we have in our lives. As his big sister, I had the privilege to have known him for 42 years: as a baby, a toddler, a child, a teenager, a young man and a maturing adult. As his sibling I gained a strange and privileged perspective on a human life of pain, joy, and persistence. With his life cut short, my relationship to him continues through memories.
Memory has fascinated me for decades, as it is so fundamental to who we are as humans. Without our memories we lose our sense of identity as they are our recollection of existence. Memories remind us of how we are connected in the world – to people, places, and things. They form in complex, fragmented and associative ways. One memory can trigger another in no particular order. Paying attention to this, I realised how memory can also be unreliable and porous.
With the embroideries as starting points, the written memories are attempts at capturing kaleidoscopic moments of Alexander’s multitude of facets. The ones that surfaced here are indeed just a few. There is always a sketchy quality to memories when they are recounted. I cannot promise the ‘factfulness’ of the stories. Forgive me for any potentially fabricated memories. I have tried to check with my parents and friends where my own memory had gaps or failed. They say this is very common, that we tend to modify and amend our memories to suit us. These accounts are what I conjured.
Of course, there is the trap of aggrandising him, making him more palatable, more exceptional, as I haven’t made the effort to recount his warts or farts or grumpy attitude. Of course, he had bad moods, he could be angry, sardonic, facetious, even aggressive, and sad. He was strong-willed and stubborn, and at times uncompromising. He knew how to play his sympathy cards to avoid, for example, washing up as a child, and how to take advantage of his ‘differentness’ to gain accolades and praise. He was also funny, cheeky, smart, loyal, and fiercely fair – and a very loving brother to me.
My identity was marked by having a brother who was ‘different’, who almost died as an infant, by having parents who had to focus a lot on his survival and health, putting me aside at times. I became a vigilant protective sister. I learnt early a greater sensitivity to, and acceptance of, ‘difference’. In many ways, because of him, I am me.
He strived for excellence in sports, and in doing so he in many ways became a ‘poster child’ – an ‘object of inspiration’ – by defying the normative perceptions of (dis)ability as physically limiting. He set the bar high in doing so and because of this he strived to be accepted as normal. Like everyone, he desired respect, celebration, and positive recognition, and he did so with unusual coping mechanisms. Despite this, he could never quite escape nor defy the deeply entrenched normative and ableist view on visible disability, which comes with a range of assumptions about one’s capabilities. The heart of the matter was that his heart condition was an invisible disability. This made him super special normal.
Super Special Normal is published by Lundebye Press 2023.
Anette Lundebye is an artist, designer, researcher, educator and coach.