UK Poverty 2025

Although the UK is one of the wealthiest nations in the world, "current levels of poverty are around 50% higher than in the 1970s" (via). According to the report "UK Poverty 2025", more than 1 in 5 (i.e. 21% or 14.3 million people) were in poverty in 2022/23. A closer look shows that 2 in every 20 adults but 3 in every 10 children lived in poverty. 4 in 10 of those in poverty (6 million people) were in very deep poverty defined by an income far below the poverty line. The poorest families had an average income of 57% below the poverty line. 

Around 3.8 million people (including one million children) experienced destitution, the deepest form of poverty where the most basic needs such as staying warm, dry, clean and fed cannot be met. These disturbing figures have more than doubled between 2017 and 2022. 

There are specific groups that are particularly vulnerable, such as children in general or - even more - larger families with three or more children or children in lone-parent families  (45% of children in large families and 44% of children in lone-parent families were in poverty). Minority ethnic groups are also susceptible to poverty. 56% of people in Bangladeshi and 49% in Pakistani households lived in poverty. The intersection of ethnicity and childhood in numbers means that 67% of children in Bangladeshi and 61% of children in Pakistani households were affected by poverty. 4 in 10 people (40%) in Black British households were in poverty. 

Ethnicity is not the only minoritiy status that is related to poverty. The poverty rate (30%) for disabled people, just to mention one example, was 10 percentage points higher than the rate for people without disabilities. A distinction of disabilities is of interest since it shows that it matters wether one has a limiting mental condition (50% poverty rate) or a physical type (29% poverty rate) of disability (via).

The Joseph Rowntree Foundation points out the importance of tackling poverty stigma in order to fight poverty:

We believe that poverty and poverty stigma are inextricably entangled social problems that reinforce and feed each other. 

We believe that poverty and poverty stigma need to be tackled simultaneously. Anti-poverty work needs to be anti-stigma work at its roots and in every branch of collective action towards ending poverty in the UK. 

We believe that designing stigma out of systems of welfare and support is integral to the fight for economic justice and economic security (Cooke, 2023). 

We believe that stigma is a powerful glue that holds poverty in place, enabling and exacerbating inequalities of wealth, health and opportunity. Loosening the grip of stigma is a key lever of wider progressive social change. 

Effective action on poverty stigma needs to be intersectional, collective and participatory. (via)

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photograph by Rob Brenner (copyright by R. Brenner) via

Internalising Ableism from a Young Age

Jóhannsdóttir et al. (2022) studied internalised ableism based on four focus-group sessions with young people (aged 18-35) who identified as disabled. The participants reflected on their childhood and adolescence and shared their experience that ableism made their impairment "a sensitive marker of something 'abnormal' and 'undesirable', which again made them even more aware of their (...) differences and negative portrayal in society". 

I understand it; I don’t know if I would date me, with everything that comes with it. So, I understand people, even if it is not the right attitude, or maybe not very modern. I cannot get frustrated or angry with people because I understand it 100%.

In fact, having to constantly fight notions of normality, abnormality, prejudice, and stigma, dealing with people's stares, patronising comments, aggression and micoraggression led to exhaustion, anxiety, depression and isolation. Adolescence was referred to as a particularly difficult time. Some participants mentioned isolation and disconnection to be everypresent. Being treated as inferior made them feel unworthy of both love and belonging, that again reinforced shame. And shame was strongly linked to mental health issues and negative body image. A few participants considered internalised ableism to be the main barrier to their wellbing in later life.

The extent to which internalised ableism developed was mediated by family support, peer interactions, networks and safer spaces. In line with prior findings, ableism started early ... sometimes even before birth when encountering doctors. Having a disabled child is often seen as a tragedy or a burden on the family. Some parents actively fought these notions, others identified with these ideas. One participant of the focus groups said:

It’s like if you are born disabled, your parents need education on everything their child can do. Not that the doctor comes and says, “This is what is wrong, and this … and this… and this.” Too often, a grim picture of the baby’s condition is painted. When rather someone should come and say, “These are the resources available for you …. Your child can do this … and this … and this.” The focus is too often on what is wrong with the baby but not what the baby is capable of.

Gender, ethnicity, social status and other intersections also had an impact on how strongly discrimination was felt.

For me, it is complicated to discuss relationships because I am a lesbian. (…) people connected that to my disability, saying that I just knew myself as a woman. And that I did not know men. That is why, according to them, I am attracted to women because it is the only thing I know! (everyone laughs)

The lack of socialising experiences with other disabled children was discussed in a controversial manner showing that this separation might hinder young people from identifying with other disabled people.

I had a very good paediatrician who fought for me to not associate with other disabled children, that is, I would not go to a special school, not go to the summer camps for disabled children, like my brothers. And yes, I spent much more time around non‐disabled children.

I started experiencing that when I was around disabled children. I did not understand what they were going through… I did… I disregarded my disability. Mine was not as important/valid as that of others.

Summer camps for disabled children, i.e., the forced segregation experienced, for many, were ...

Just really hard summers … where we, as young children, experienced the vulnerability of other children in this place. It kind of sticks with me, this vulnerability and aloneness of the other children. We were not experiencing one another’s strengths, you know. There is a huge difference between experiencing peer support through strength and empowerment and enduring what we experienced in that summer camp.

The feeling of disconnection, unlovability, and unworthiness can result in deep shame making people internalise ableism at a young age. There are other ways.

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- Ásta Jóhannsdóttir, Snæfríður Þóra Egilson & Freyja Haraldsdóttir (2022). Implications of internalised ableism for the health and wellbeing of disabled young people. Social Health Illn, 44(2), link
- photograph (Oksana with a leaf of cabbage from the garden of the Internat where she lives in isolation with more than 60 girls and women categorised as disabled. Pretrykhiv, Ternopil, Ukraine. 2016) by Carolyn Drake via

The Demolition of Ableism. By Linda Williams.

"To the Government Agency whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Charity whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Medical “Expert" whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Executive Teams whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Media, Print, Film, and Television Industry whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Consumer Goods Industry whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Education Systems whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

To the Demagogues, Charlatans and Profiteers of disability whose top down directives erase, speak over, and maintain ableism in our society: we are calling you out. This is the demolition of Ableism. 

Real social change begins in ways that are not always stylistically graceful. It is unruly, messy, and very real. But this is how we start."

Linda Williams, Invisible Disability Project

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photographs (A Self-Portrait of Depression) by Jenn Terrell via

Inspiration Porn

The term "inspiration porn" was coined by disability rights activist Stella Young (1982-2014) in 2012. Here are some excerpts from her TEDx talk in which she explains why disabled people are no objects of inspiration, no objects at all.

I grew up in a very small country town in Victoria. I had a very normal, low-key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. And when I was 15, a member of my local community approached my parents and wanted to nominate me for a community achievement award. And my parents said, "Hm, that's really nice, but there's kind of one glaring problem with that. She hasn't actually achieved anything." 

 And they were right, you know. I went to school, I got good marks, I had a very low-key after school job in my mum's hairdressing salon, and I spent a lot of time watching "Buffy the Vampire Slayer" and "Dawson's Creek." Yeah, I know. What a contradiction. But they were right, you know. I wasn't doing anything that was out of the ordinary at all. I wasn't doing anything that could be considered an achievement if you took disability out of the equation. Years later, I was on my second teaching round in a Melbourne high school, and I was about 20 minutes into a year 11 legal studies class when this boy put up his hand and said, "Hey miss, when are you going to start doing your speech?" And I said, "What speech?" You know, I'd been talking them about defamation law for a good 20 minutes. And he said, "You know, like, your motivational speaking. You know, when people in wheelchairs come to school, they usually say, like, inspirational stuff?" "It's usually in the big hall." 

And that's when it dawned on me: This kid had only ever experienced disabled people as objects of inspiration. We are not, to this kid -- and it's not his fault, I mean, that's true for many of us. For lots of us, disabled people are not our teachers or our doctors or our manicurists. We're not real people. We are there to inspire. And in fact, I am sitting on this stage looking like I do in this wheelchair, and you are probably kind of expecting me to inspire you. Right? Yeah.

Well, ladies and gentlemen, I'm afraid I'm going to disappoint you dramatically. I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we've been sold the lie that disability is a Bad Thing, capital B, capital T. It's a bad thing, and to live with a disability makes you exceptional. It's not a bad thing, and it doesn't make you exceptional. 

And in the past few years, we've been able to propagate this lie even further via social media. You may have seen images like this one: "The only disability in life is a bad attitude." Or this one: "Your excuse is invalid." Indeed. Or this one: "Before you quit, try!" These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn.  And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."

But what if you are that person? I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name.  And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective. 

And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term "disabled people" quite deliberately, because I subscribe to what's called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses.  

(...) 

I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. Smiling at a television screen isn't going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It's just not going to happen. 

I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching "Buffy the Vampire Slayer" isn't referred to as achieving anything because she's doing it sitting down. I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user. 

Disability doesn't make you exceptional, but questioning what you think you know about it does.

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photograph (Isle of Wight Festival) via

A Matter of Dignity: How Minnesota is Failing the Disabled

In 2016, Chris Serres, Glenn Howatt and David Joles interviewed dozens of people for their project "A Matter of Dignity". The five-part series on Minnesota's treatment of people with disabilities started as an inquiry into maltreatment and turned into a six-month investigation exposing systematic segregation and neglect of vulnerable adults with disabilities, people who are denied dignity in housing, at the workplace, in gonvernment services, in romance, and intimacy. The project makes these people visible, humans such as an adult with Down syndrome at a garbage dump collecting trash for two dollars an hour (see photograph), workers with brain injuries scrubbing toilets for half the minimum wage, or a woman with bipolar disorder escaping from her group home and throwing herself in front of a speeding car (via).

A Matter of Dignity: How Minnesota is Failing the Disabled
by Chris Serres and Glenn Howat, 2016 (excerpts):

In a field on the outskirts of town, a man with Down syndrome is spending another day picking up garbage. He wears faded pants, heavy gloves, a bright yellow vest, and a name tag that says “Scott Rhude.” His job is futile. Prairie winds blow debris from a landfill nearby faster than he and his coworkers can collect it. In the gray sky overhead, a turkey vulture circles in wide loops. 

Rhude, thirty-three, earns $2 an hour. He longs for more rewarding work—maybe at Best Buy, he says, or a library. But that would require personalized training, a job counselor, and other services that aren’t available. 

“He is stuck, stuck, stuck,” said his mother, Mary Rhude. “Every day that he works at the landfill is a day that he goes backward.” 

Rhude is one of thousands of Minnesotans with disabilities who are employed by facilities known as sheltered workshops. They stuff envelopes, package candy, or scrub toilets for just scraps of pay, with little hope of building better, more dignified lives. Many states, inspired by a new civil rights movement to integrate the disabled into mainstream life, are shuttering places like this. Not Minnesota. It still subsidizes nearly 300 sheltered workshops and is now among the most segregated states in the nation for working people with intellectual disabilities. 

The workshops are part of a larger patchwork of state policies that are stranding legions of disabled Minnesotans on grim margins of society. More than a decade after the US Supreme Court ruled that Americans with disabilities have a right to live in the mainstream, many disabled Minnesotans and their families say they still feel forsaken—mired in profoundly isolating and sometimes dangerous environments they didn’t choose and can’t escape. 

(...) Minnesota pours $220 million annually into the sheltered workshop industry, consigning more than 12,000 adults to isolating and often mindnumbing work. It also relies more than any other state on group homes to house the disabled— often in remote locations where residents are far from their loved ones and vulnerable to abuse and neglect. And when Minnesotans with disabilities seek state assistance to lead more independent lives, many languish for months—even years—on a waiting list that is now one of the longest in the nation. (...)

Other states are far ahead of Minnesota. Vermont has abolished sheltered workshops and moved most of their employees into other jobs. States across New England place nearly three times as many disabled adults in integrated jobs as Minnesota. Washington offers disabled workers nine months of vocational training and career counselors. (...)

The segregation starts early. As a boy in special education classes, Scott Rhude showed talent with computers and photography. But once he graduated from high school, his mother says, he bounced from one segregated workplace to another, never quite escaping a system that has sometimes amounted to little more than what she calls “babysitting.” 

Away from his job, Rhude has built an independent life. He pays his own rent and shares a house with three friends in Willmar, a town of 19,600 west of the Twin Cities. He sings karaoke, goes on double dates, and started his own book club. His bedroom is packed with trophies from Special Olympics events. “I’m not afraid of anything,” he joked recently, flexing his biceps under a poster of a professional wrestler in his bedroom.

But Rhude’s pursuit of independence ends each morning when the city bus drops him off at West Central Industries, a sheltered workshop on the edge of town. From here, a van takes him to the Kandiyohi County landfill, where he spends the next five hours collecting trash on a hillside as big as two football fields. 

Mary Rhude says she and her son hoped the roving work detail would broaden Scott Rhude’s skills and give him exposure to other employers in Willmar. Instead, she says, it has become a “suffocating” experience that keeps her son isolated from the community. Kristine Yost, a job placement specialist for people with disabilities, calls this system “the conveyor belt.” 

“It’s heartbreaking,” she said, “but time and again, young people get pigeonholed as destined for a sheltered workshop, and then they can’t get out.”

In 1999, the US Supreme Court issued a landmark ruling, known as Olmstead, that prohibits states from unnecessarily confining people with disabilities in special homes or workplaces. In a broad reading of the Americans with Disabilities Act, the court said that fairness demands not just access to buses and buildings, but to a life of dignity and respect. People with a wide range of disabilities —including Down syndrome, cerebral palsy, and autism—call it their “Brown vs. Board of Education.” 

In the ruling’s aftermath, many governors closed state institutions for the disabled and the US Justice Department sued Oregon and Rhode Island to close sheltered workshops. But, sixteen years later, the movement has yet to take hold in Minnesota. 

Under sustained pressure from a federal judge, Minnesota this fall became one of the last states in the country to adopt a blueprint—known as an Olmstead plan—to expand housing and work options for people with disabilities. County officials and social workers have begun consulting disabled clients about their goals and interests. By 2019 the state expects counties to complete detailed, individualized plans spelling out work and housing options for thousands of disabled adults. 

Yet even if it is executed successfully, the state’s plan calls for only modest increases in the number of disabled adults living and working in the community. It makes no mention of phasing out segregated workshops and group homes. Its employment targets, Hoopes said, are “woefully inadequate” and a “lost opportunity.” (...)

Sheltered workshops were designed after World War II to prepare people with disabilities for traditional employment. They caught on in Minnesota, and between 1970 and 1984 the sheltered workforce increased from 700 to 6,000 workers, including thousands of people who needed daily activities after the closing of state mental hospitals. Today, state policy perpetuates the segregation. (...)

From a taxpayer’s perspective, the workshop model is highly inefficient. It costs roughly $52,000 to create a sheltered workshop job that pays at least minimum wage, state records show. That’s nearly ten times the $5,300 it costs to help a disabled worker get a job in the community, according to a 2010 survey by the Department of Human Services. (...)

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photograph via

The Deaf Snow White. By Kanika Agarwal. An Excerpt.

The great king and his queen were married for five years and were still waiting for a child. The mother often prayed for a girl whose skin and heart would be white and pure as snow. In their sixth year, their prayers were answered and they finally got a baby girl. However, the queen died a month after the birth of the child. The king was left to care for their only daughter and put his heart and soul into it. He named her Snow White in remembrance of his wife’s wishes.

As the years passed by, Snow White blossomed into a beautiful girl fair as snow. She had a gentle heart and a soothing voice. She grew up playing in the gardens of their palace, and most of her friends were the plants, bushes and her favourite three little birds – Brownie, Bluie and Ruie. She talked to them endlessly as her father presided over his court. Days turned into months and months turned into years. In the blink of an eye, Snow White was ten years old. It was then that she started losing her hearing. Her father knew that he would not be able to care for Snow White alone now. So, he remarried – primarily to provide care to his deaf daughter. But no one knew what fate had in store for Snow White.

(..) 

Snow White started sensing that her stepmother was using her deafness to fill her father’s ears against her. She observed that her father had become sterner towards her. He once came and sat beside her to talk. She saw his lips moving: “My dear little child, you need to work harder and make sure you treat your mother and your sisters fairly.”

(...) 

Snow White woke up to the pecks of her little birds on her body. “How did you find me?” she asked. They rubbed their beaks against her nose sweetly. Suddenly, Snow White realised that someone was in the house. She peeped out of the bedroom door to find seven little people sipping wine by the fire. She was scared of what awaited her and wanted to run out. So, she tried tiptoeing, only to realise that she was too big to escape the house unnoticed.

She spoke up hesitantly, apologising to them for her intrusion and tried walking away. They moved their lips but they were too tiny for her to read. That is when she had to tell them about her deafness. While many of them did not believe her and accused her of lying, one of them, Sheram, gestured to her to sit and explain her story. Tabish and Sheram listened patiently. By the time she finished her story, her fear had turned into grief and she sobbed inconsolably.

Kanika Agarwal
 

An excerpt taken from Parita Dholakia's version of Rapunzel (via): 

The prince falls in love with Rapunzel and invites her to his palace ...

“I can’t. There is no ramp from the room to the garden.”
“We will find a way. I can carry you down,” says the prince.
“Carry me? I don’t think I would like that. I always go everywhere wheeling my own chair.”

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- Agarwal, K. (2024). The Deaf Snow White. In: Rising Flames (ed.) And They Lived ... Ever After: Disabled Women Retell Fairy Tales. HarperCollins India.
- More: The Guardian, link
- photograph of Nikki Giovanni (1972) via

Excerpt II: The Politics of Staring. By Rosemarie Garland-Thomson.

The rapid flourishing of photography after 1839 provided a new way to stare at disability. In our ocularcentric era, images mediate our desires and the ways we imagine ourselves.' Among the myriad, often conflicting, and never indifferent images modernity offers us, the picture of ourselves as disabled is an image fraught with a tangle of anxiety, distance, and identification. As a culture,we are at once obsessed with and intensely conflicted about the disabled body. We fear, deify, disavow, avoid, abstract, revere, conceal, and reconstruct disability - perhaps ...

... because it is one of the most universal, fundamental of human experiences. After all,we will all become disabled if we live long enough. Nonetheless, in representing disability inmodernity, we have made the familiar seem strange, the human seem inhuman, the pervasive seem exceptional. By the beginning of the twentieth century, for example, public displays of disabled people became inappropriate in the same way that public executions and torture came to beconsidered offensive. Disabled people were sequestered from public view ininstitutions and the private sphere as middle-class decorum pronounced it impolite to stare. Photography, however, has enabled the social ritual of staring at disability to persist in an alternate form. (Garland-thomson, 2002)

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- Garland-Thomson, T. (2002). The Politics of Staring: Visual Rhetorics of Disability in Popular Photography. In: Disability Studies: Enabling the Humanities.
- photograph (Radical Beauty Project) via

Excerpt I: The Politics of Staring. By Rosemarie Garland-Thomson.

The history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while politically and socially erased. The earliest record of disabled people is of their exhibition as prodigies, monsters, omens from the gods, and indexes of the natural or divine world. From the New Testament to the miracles of Lourdes, the lame, the halt and the blind provide the spectacle for the story of bodily rehabilitation as spiritual redemption that is so essential to Christianity. From antiquity through modernity, the bodies of disabled people considered to be freaks and monsters have been displayed ...

... by the likes of medieval kings and P. T. Barnum for entertainment and profit in courts, street fairs, dime museums and sideshows. Moreover, medicine has from its beginnings exhibit the disabled body as what Michel Foucault calls "the case", in medical theatres and other clinical settings, in order to pathologize the exceptional and to normalize the ordinary (Birth of the Clinic 29). Disabled people have variously been objecs of awe, scorn, terror, delight, inspiration, pity, laughter, or fascination - but they have always been stared at. (Garland-Thomson, 2002)

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- Garland-Thomson, T. (2002). The Politics of Staring: Visual Rhetorics of Disability in Popular Photography. In: Disability Studies: Enabling the Humanities.
- photograph (Radical Beauty Project) via 

Dear people who feel sorry for people with disabilities,

I have heard people say “Aww, I’m sorry.” But here is my question: why are you sorry? Do you assume because we are disabled we do not have a life that is as full as yours? Or because you think our lives are tough because we need help with things? Don’t get me wrong, as a disabled community we do have our struggles, whether that is accessibility, having the right things we need, etc. But at the end of the day, we are people. We have friends, jobs, we go to school and do so much more.

Let’s get real here. A parent hearing the word “disabled” changes all their hopes and dreams for a “perfect” child. Instead they may wonder: Will they have friends? Will they be picked on? Will they live a full, happy life? Let me answer this question. Yes, they can live happy lives. How do I know this? I am disabled. I have cerebral palsy and I am an amputee. I run and founded a small group in my area called Youth Changing the World with my friends. Last year I became a independent self-published author.

I think many people in society have a problem with the word disability. They are scared because they have a picture in their heads of someone who can’t do anything for him or herself. So they don’t even try to see what we are capable of, and limit us because they don’t know what to do or how to help us. For those of you who feel bad for us, or don’t quite get how we do the awesome things we are able to when given the chance, spend time with someone who is disabled. Help us — not necessarily with basic or everyday tasks, but with more accessibility. Give us jobs and support our right to be heard. We have just as much to say as everyone else if not more. So listen — you may learn something.

As a community we have to stand up and stand out and create and define our own lives, not let others do it for us. When we do, the world will see what the word “disabled” really means. 

Sincerely, 

A disabled woman who is limitless (by Larissa Martin)

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photograph of Sarah Gordy by Jonny Bosworth for The Radical Beauty Project via

Alice (II)

Alice was born with Down’s syndrome, but she is no different to any other little girl. She feels what we all feel. She needs what you and I need. 

We hadn’t been planning on another baby, and I was not prepared for how I would respond after Alice was born. She did not feel like my other children, and part of my instinct was to pull away from her. I was fraught with anxiety; I once dreamt Alice was swaddled in a blanket and I had forgotten all about her. Alice was so small, but I knew she could feel my rejection. I was deeply sad that I could not immediately love my child – I wanted to make our relationship better, and the responsibility lay with me.

This photograph was taken last spring, in the midst of a virus. Alice is vulnerable to sickness, and when she is ill, she becomes very ill, very quickly. She has had pneumonia twice this year, which means the whole family is consumed for the duration with anxiety over her health. Life comes to a standstill during these periods. I can spend an entire week just sitting with her, tense with worry. The moment the illness breaks, life returns to the house. 

She had been sleeping on the sofa. For a very brief moment, she sat upright and looked right through me. I remember the spring light and a strand of hair against her skin; I wanted to move it, like an irritation. I felt what it must be like to be Alice in that moment.  

You get a sense in this picture, I think, of Alice’s ease in making meaningful contact with other people. It is uncomfortable for most of us to be seen or witnessed by others; we can be fearful of what we think others will see in us. Alice is oblivious to that. She is free of judgment. Sometimes, it can feel like she is all-seeing.

Alice is wilful and determined, like me. She thrives on physical intimacy and is not afraid of giving or receiving it. She demands connection with people. She’s often very capable of choosing someone to connect with deeply. She usually has a strong impact on them.

When I was pregnant with her, we got a call from the hospital informing us our baby had a one in 30 chance of having Down’s syndrome. The language of risk was used as a matter of course, the underlying assumption being that we would want to have further tests; that, inevitably, we would want to terminate our pregnancy. There was not a single positive conversation with doctors or staff at the hospital, no discussion about Down’s syndrome, of how things might work out or how we might prepare.

Once Alice was delivered, the mood worsened. She was talked of as a medical condition, a diagnosis, a statistical failure of medical practice. I’ve learned since that 92% of babies with Down’s syndrome are terminated at the pre-natal screening stage. Prior to the introduction of such screenings, many children like Alice were severely marginalised, and often institutionalised, with little or limited medical care. 

I no longer see Down’s syndrome. I just see Alice. I still have to manage my expectations. Having a child like Alice means I can’t assert my authority as a parent. Alice is Alice. She will develop in her own time, and if anyone wants her to be anything other than who and how she is, they will achieve nothing at all. This can feel frustrating at times, but then parenting any child has its frustrations. 

Photographing Alice has helped me shine a light on why I struggled to love her, all the fear and uncertainty I felt. She has guided me to what needed to be expressed. I always knew she loved me, it was never about that. It was about me needing to fall in love with her – and I did, unconditionally.

by Sian Davey (2015)

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photographs by Sian Davey via and via

Alice (I)

This series is an illustration of family life — all the tensions, joys, ups and downs that go with the territory of being in a family. My family is a microcosm for the dynamics occurring in many other families. We are no different. As a psychotherapist I have listened to many stories and it is interesting that what has been revealed to me, after fifteen years of practice, is not how different we are to one another, but rather how alike we are as people. It is what we share that is significant. The stories vary but we all experience similar emotions. We are all vulnerable to feelings of anger, grief and depression. The list goes on…  

My daughter Alice, born with Down’s Syndrome, is no different to any other human being. She feels what you and I feel. However, our society does not acknowledge this and her very existence is given little or no value. Alice has entered a world where routine genetic screening at twelve weeks gestation is thrust towards birth prevention rather than birth preparation. Whilst we make our selection and decisions in private, the effect on society is that 92 percent of Down’s Syndrome babies are terminated at the pre-natal screening stage. Indeed, prior to the introduction of screening, children such as Alice would have been severely marginalized and ultimately institutionalized and given little or limited medical care. 

I was deeply shocked when Alice was born as an ‘imperfect’ baby. It was not what I had expected. Our first experiences in hospital did little to diffuse this. The pediatrician pulled back her legs, pushed her thumbs deep into Alice’s groin, and promptly announced that we should take Alice home and treat her like any other baby. But she didn’t feel like any other baby, and I was fraught with anxiety that rippled through to every aspect of my relationship with her. My anxieties penetrated my dreams. I dreamt that Alice was swaddled in a blanket and that I had forgotten all about her. I unwrapped the tight bundle that she was nestled in, to feed her, only to discover her body was covered in a white fluid — a fluid of neglect; and yet I was unable to feed her, unable to respond to her basic needs. 

On reflection I saw that Alice was feeling my rejection of her and that caused me further pain. I saw that the responsibility lay with me; I had to dig deep into my own prejudices and shine a light on them. The result was that as my fear dissolved I fell in love with my daughter. We all did. 

I wonder how it might be for Alice to be valued without distinction, without exception and without second glance. 

This project is for her, for Alice.

by Sian Davey, series "Looking for Alice"

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photographs by Sian Davey via and via and via and via and via aand via 

“Helpless and a cripple”: the disabled child in children’s literature

For more than a century, children described as "cripples" were part of children's literature. Othered and constructed as objects of pity, they were there for other child characters and child readers to sympathise with them. Only the child who was disabled as a result of disobedience was not an object of pity. That way, authors sent the clear message that you shall always obey your elders otherwise this horrible fate might be yours. A great many nineteenth-century books asked child readers to either pity the disabled child or to see the temporary disability as a sort of punishment and lesson since suffering would turn them into better persons.

The able-bodied characters and able-bodied readers were superior to the disabled child. A physical norm was communicated, the disabled child was a deviation from the ideal. The Romantic Child was "innocent, unspoiled", often physically attractive and rather contrasted the child whose disability was described in detail.

In Evangelical writing, the attractive innocent often served as a role model for the reader. "Daisie's Pocket Money" from 1902 is a good illustration: 

Daisie is described as ’a dear little creature, with flaxen hair and blue eyes’ – wouldn’t all readers want to be like her - and, if they couldn’t be like her physically, they could emulate her goodness. She saves her pocket money in order to pay for an operation for her friend Edith, who ‘fell and hurt her spine’ and cannot sit up. Her money, of course, is not enough but the ‘great doctor’ is touched by Daisie’s innocent appeal and visits (and cures) Edith anyway.

According to Perry Nodelman, "children's literature represents a massive effort by adults to colonise children to make them believe that they ought to be the way adults would like them to be". Hugh Cunningham sees a manipulation of the public using sentimental appeals on behalf of children, of the homeless, of the disabled. Both, in fact, children's and adult literature did this equally. Robert Pattison points out that these books are political since the child character and the child reader are used "to expose the imperfections of the world" around them and to foster the author's ideologies.

Many of these writers for children were thus doing as Peter Hollindale points out Charles Dickens did for adults, in using the child as ‘a lens or measure by which adult practices can be socially and morally exposed.’  Authors wanted to develop compassionate (and generous) children, but they wanted this to continue into adulthood; the compassionate children of today were to become the child rescuers of tomorrow. (Hillel, 2005)

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- Hillel, M. (2005). "Helpless and a cripple": the disable child in children's literature. In (eds) R. Finlay & Salbayre, S. Stories for Children, Histories of Childhood, Volume 2, (127-137), link
- photograph by Simon Pope (London, 1973-1975) via

Mari Katayama's Punk Prosthetics

Mari Katayama was born with tibial hemimelia, a condition in which children are born with a tibia, i.e. shinbone, shorter than usual or missing. The condition is extremely rare (1 out of every 1 million births) (via). In Katayama's case, tibial heminelia caused club feet and a cleft left hand resembling a crab's pincers, which is also the very reason why crab motifs are often part of her work (via).

“You can’t separate my body from my work. But I’m not making art out of my disabilities.”
Mari Katayama

“I think everyone is lucky whether they realize it or not. No matter what kind of body we are born with, the fact that we are living in this world is lucky. We are here, we can feel, we can cook, we can eat, we can think; I think that’s a great thing.”
Mari Katayama

“All human bodies – including ones like mine that have been altered by human hands – are perfect.”
Mari Katayama

At the time I decided to get my legs amputated, it didn’t seem like such a big decision. I just wanted to wear the same shoes as everyone else. When my legs were amputated, I think I understood that actually I would never be able to be like everyone else.
Mari Katayama

As a child, Katayama used to wear special shoes that were buckled to her legs with braces. Hence, it was not possible to wear regular clothes. Three generations - her great grandmother, her grandmother and her mother - were constantly sewing clothes for her and encouraged her to create her own ones. "Sewing became second nature." There was the choice between a) being bound to the wheelchair for the rest of her life but keeping her legs and b) being able to walk but losing her legs. At the age of nine, Katayama decided to have both lower legs amputated: "I chose to walk." (via)

[Prosthetics has] been the hardest part of my life. Some people say that wearing a prosthesis is part of the body, but for me, it feels like wearing a very heavy boot. I hate prostheses, but I can’t live without them, And I can’t function in society without them either. I’ve recently come to realize that I need to build my own body in order to utilize this electronic prosthesis. I’ve begun to enjoy it, as the more I work at it, the nicer my gait becomes.
Mari Katayama

The amputation also meant that she could wear regular clothes which again sparked her interest in fashion, "hoping she could fit in by dressing like other kids. But the bullying continued." A teacher of hers suggested that perhaps she was bullied because she had provoked others by looking at them arrogantly (via).

At 16, she modelled for the graduation show of a fashion student and tattooed her prosthetic legs. Katayama thought this statement would be a welcome one and that she would make friends with others.  However...

“It made the situation worse,” she says. “Nobody wanted to have anything to do with me.” She had, however, hit upon a way of expressing herself. “It made me realise that words and gestures weren’t the only way to communicate.” Inspired by punk, she dyed her hair green and shaved off her eyebrows. “It was my way of saying, ‘Leave me alone.’” (via)

When asked what the most memorable thing she did to rebel, Katayama replies:

Having a daughter. Everyone was against it. Not that I had a child to rebel, of course. But in my life so far, even compared to becoming an artist, giving birth was the thing that most people were against.
Mari Katayama

photographs via and via and via and via and via

"Since the event I've become half a person." The person in the disabled body.

In their paper, Agmon, Sa'ar and Araten-Bergman (2016) explore the experiences of newly diagnosed persons with disability. Since these individuals lived to adulthood as able bodied people before becoming disabled, their experiences may "offer a unique perspective on both normative and aberrant personhood".

Research on the disabled body is characterised by three assumptions: 1) Disability is a distressing and stigmatised experience that often leads to exclusion, 2) the disabled body is "a stopping point on a continuum of health", and 3) disability is a social construct which becomes more obvious when considering cross-cultural variations in approaches.

The authors come to the conclusion that visibly damaged bodies are assumed to entail cognitive disability. Doctors, for instance, tend to direct explanations to relatives and not to the individuals with disability despite them being present. their abilities are often underestimated, their independence is far from being nurtured reinforcing their exclusion. Persons with disability lose sexuality and gender, usual "codes of interaction between men and women" are disregarded by caregivers in the institution where the study was carried out. Individuals with disability are infatilised, at birthdays they are "allowed" to have some candies.

Since the event I’ve been half a person—half is saying too much: a living dead person. On one side you see how he’s dead. The tonus goes higher and higher, the hand is completely paralyzed, the leg is splinted. Dr. Zaiger told me on my last visit to Leowinstein, that if it doesn’t improve we’ll have to give injections to release the tonus.

Aryeh

Results: 

The analysis reveals the agonizing experience of individuals who have become disabled in adulthood, who undergo symbolic diminution and social exclusion after their former acceptance as whole and normative persons. This ongoing multifaceted process includes infantilization, denial of their sexuality/sensuality, transgression of gender boundaries, and their construction as categorically different from the "healthy" people around them. At the same time, the analysis also demonstrates the ways in which daily routine at the daycare center also complicates the normative healthy-disabled binary, indicating a continuum on which attendees may attempt to reposition themselves.

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- Agmon, M., Sa'ar, A., Araten-Bergman, T. (2016). The person in the disabled body: a perspective on culture and personhood from the margins. International Journal for Equity in health, 147, link
- photograph (protesting against the 1992 ITV Telethon, by People's History Museum) via

Different. Not Less.

"I am different, not less."

Temple Grandin

photograph of Temple Grandin via

Tony Heaton on the Work of Disabled Artists

Tony, your practice is widely established and your work is recognised internationally. However, the work by disabled artists is too often restricted to the community they represent and struggle to reach the mainstream art debate. Do you agree with this thought? If so, what are in your opinion the reasons of this phenomenon?

Well, perhaps the question is, why does the so-called ‘mainstream’ marginalise disabled artists and actually disabled people generally? Should we be forced to knock on those closed doors or should the ‘mainstream’ be opening up and looking beyond their elitist and frankly conservative narrow view of what is art and who makes it, and extending their intellect to engage with disabled artists and disability arts. If they did they would find some amazing work. Ultimately it's about power and rank, disabled people are marginalised and oppressed through poverty, lack of access to goods and services, limited access to transport and the built infrastructure and prejudice. The ‘mainstream’ were not interested in showing or collecting the work of disabled artists, this is the main reason that I initiated NDACA (National Disability Arts Collection and Archive), because if we as disabled people don't make it happen for ourselves then it won’t. NDACA will help to show and promote that history, a history that would have otherwise been lost because that work is not in ‘mainstream’ collections. The mainstream are also reluctant to help us into positions of power and rank, there are very few disabled people promoted onto decision-making boards or in arts institutions, this needs to change, but those with power are always reluctant to change, just as there is institutionalised racism there is an inherent ableism throughout society.

Tony Heaton

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photograph of Tony Heaton in front of the sculpture of a map of Great Britain made of wheelchair parts of one single NHS wheelchair (Great Britain form a Wheelchair, 1994), photo by Hilary Porter via

"I rather abstain from going places than use a cane." Mobility, stigma and design.

People with difficulties walking benefit from mobility aids since they reduce fall risk and increase confidence and autonomy. Yet, many are reluctant to use the equipment due to social pressures and perceived stigma. Despite appreciating the benefits, the independence and control over activities, the negative associations with ageing and physical decline keep people from using mobility aids. 

In addition, the lack of fasionable design - or rather, the stigma added by designing them the way they look, i.e., medical-appearing devices shouting "I need help" - has an enormous impact on the decision not to use them. Some non-device users say that they would be rather dead than using a device. At the same time, a sporty appearance and colourful design make them more acceptable since people "would feel cool" and not "old" using them (Resnik et al., 2009).

On Sunday, the children were going to the park…but just knowing that I had to use the cane.. I said: “No, I will stay home …” When they were there, they were all thinking: “Mom did not come to the park because of the cane …and they even said to me that they had this cart that handicapped people use to get around. We could have gotten in one of them and be riding it …(Device-user, Hispanic woman)

Where do you go from here? There’s not many places you’re gonna go. …That’s the thing that kind of scares you. And then you look at this (the cane), like I said, I’m sure it’s good for you and I’m sure one day I’m going to have to have it. And if I needed it tomorrow for my back, I would use it if I had to because my back really is in pain. But it’s like you’re at the last stage. This is it. There’s no place else to go from here but 6-feet under. (Non-device user, Black woman)

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- Resnik, L, Allen, S., Isenstadt, D., Wasserman, M. & Iezzoni, L. (2009). Perspectives on Use of Mobility Aids in a Diverse Population of Seniors: Implications for Intervention. Disability and Health Journal, 2(2), 77-85.
- photograph by Andy Sweet via

Diagnosing Alzheimer's Disease: Black vs White Patients

In the U.S., Black Americans are about 1.5 to 2 times more likely to develop Alzheimer's or related dementias than whites are. Nevertheless, fewer Black than white Americans are diagnosed with Alzheimer's or related dementias. In a study carried out by Lennon et al. (2022), 15 years (ranging from 2005 to 2020) of data on 5.700 Black and 31.225 white participants were tracked. While 36.1% of white participants were diagnosed with Alzheimer's, only 26.8% of Black participants received the diagnosis. Relative to white participants, Black participants had 35% lower odds of having the diagnosis at the initial visit (via).

Black study participants showed higher rates concerning cognitive impairment (particularly processing speed, language, executive function) than white participants, higher rates of hypertension and diabetes - in other words, more potential risk factors for Alzheimer's. In addition, they were twice as likely to experience delusions and hallucinations and generally more likely to show symptoms such as abnormal sleep, appetite or eating changes, irritability, agitation or aggression.

According to the research team, the results are further evidence that - compared to white patients - Black patients usually need more severe clinical presentations to receive a diagnosis of dementia from physicians. The results are backed by the tendency found in numerous studies showing that Black individuals are only diagnosed with Alzheimer's or related dementias when the disease process is more advanced.

Apart from the differences in diagnostic thresholds applied by providers, the scientists believe that these trends are partly due to social attitudes within Black communities in which memory problems are viewed as a normal part of ageing and medical treatment is only sought when neuropsychiatric symptoms (hallucinations, delusions, personality changes) are encountered. 

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- Lennon, J. C., Aita, S. L., Del Bene, V. A., Rhoads, T., Resch, Z. J., Eloi, J. M. Walker, K. A. (2022). Black and White individuals differ in dementia prevalence, risk factors, and symptomatic presentation. Alzheimer's & Dementia, The Journal of the Alzheimer's Association, 18(8), 1461-1471.
- photograph by Gordon Parks via

The Impact of Wearing Finger Rings on Symptoms of Dementia

In a study, seven female Japanese dementia (Alzheimer's disease) patients (two discontinued wearing the ring since they thougt they might be forced to buy, data is based on five subjects) living in five small-scale nursing homes were asked to put rings (average price eight dollars) on their fingers from 9:00 to 19:00 for seven days. According to a majority of nursing care providers, the "irritability/lability" disappeared during the ring-wearing intervention period in those patients (n=3) showing an interest in rings. There was no effect in the two subjects not displaying an interest in rings.

Without having been asked, the nursing staff told the patients that they looked so beautiful when they saw them wearing rings. The researchers explain the decrease in irritability and lability with the women knowing about their own status of collapsing intellect and words such as "you look so beautiful" having a positive effect on self-esteem alleviating irritability and lability (Yokoi et al., 2017).

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- Teruo Yokoi, Hitoshi Okamura, Tomoka Yamamoto, Katsuya Watanabe, Shigeko Yokoi, Hitoshi Atae, Masayuki Ueda, Takahiro Kuwayama, Shigekazu Sakamoto, Saaya Tomino, Hideo Fujii, Takefumi Honda, Takayosi Morita, Takafumi Yukawa, & Nobuko Harada (2017). Effect of wearing fingers rings on the behavioral and psychological symptoms of dementia: An exploratory study. SAGE Open Medicine, Vol. 5, link
- photograph of Elizabeth Taylor via

The Dementia Statements

We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.

We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness. 

We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live. 

We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future. 

We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part. 

The Dementia Statements

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photograph of Monica Vitti via