Sedra Al-Yousef was 14 and living in Syria when her father’s life was threatened by government forces. Seven years and thousands of kilometres later, she is on the brink of a bright future in medicine, informed by deep compassion and insight from her experiences as a refugee.

Insecurity, nervousness and fear. These were the emotions that flooded my 14-year-old self as I packed to leave the city I’d always called home. That night, I had only two hours to collect my memories, books and other essential stuff in boxes before fleeing our home in Aleppo and heading to Damascus. 

Until that night, my life had always been peaceful and secure. I loved following my dad to his dental clinic and spent hours watching how he treated his patients with patience and compassion. I looked forward to the day I could begin treating my own patients in the same way.

Fast forward to that fateful night. My dad, who was also a member of the Syrian parliament, had spoken out against the murder of thousands of innocent civilians at the beginning of the war in Syria. He had been receiving death threats from President Assad’s forces for a couple of weeks, and then the threats turned into reality when these forces burned down his clinic. That night, we left Aleppo for a new life in Damascus, a life I hadn’t chosen, but one that had chosen me.

More: Novelist JJ Bola reflects on the difficulty of finding belonging in Britain as a refugee.

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Sedra Al-Yousef as a young girl in Syria

My nostalgia for my first home, school, and friends grew with each day, and two months before my 9th-grade national exams, my dad had to flee again – this time alone and on a longer journey to Denmark. A year later, my mother, brother and I finally made the trip to join him. In Denmark I not only had to learn a new language at 16, I also had to construct a new identity bold enough to handle survival in a foreign society.

Reuniting with my dad was the happiest thing that had happened to me in a year. However, while driving towards our new home, I knew that there would be no way back to Syria unless the war ended. Deep inside me, I knew that the situation in Syria was only getting worse and more complicated. 

A few weeks later, I didn’t feel that learning Danish was simply like learning any new language: it was the first chapter of a whole new book of my life. It was about knowing myself: my strengths, my weaknesses and how to communicate with my new society. Meanwhile, I lacked the feeling of being understood, so I threw myself into mastering the new language. After six months I didn’t just graduate from language school, I also started working as a translator helping other refugees adapt to their new lives. I always got motivation from my passion to start studying medicine so I could become a surgeon.

At the same time, in language school, I found myself in an unsupportive local community. I was informed that my education from Syria wouldn’t be recognised in any Danish high school, and that I had to start at a Danish school with students who were three years younger than me because – as they told me at the time – “not even a Dane can make it to a medical school in a short time, so how would a Syrian who just fled to the country be able to do so!”

I missed the simple way of life where our neighbour would knock on the door and join us for a coffee without complicated plans. There are no formalities with people you love in Syria.

At that time, my nostalgia for home and Syria was only growing. I missed the small details in my life in Syria that I had taken for granted. I missed speaking and expressing myself without having to formulate my feelings in another language. Saying what was on my mind without worrying about being misunderstood due to cultural differences. I missed family gatherings on our small balcony in Aleppo and observing the crowded streets below. 

I was still living with my family in a tiny village in southern Denmark. People there go to sleep too early and work the whole week. They don’t sit on the balconies as we did, and at eight o’clock all the streets would be as empty as a city of ghosts. 

Sedra at her graduation ceremony in Denmark.

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Sedra Al-Yousef's graduation ceremony

I missed the simple way of life where our neighbour would knock on the door and join us for a coffee without complicated plans. There are no formalities with people you love in Syria. Nobody cares that their home is small when guests are sleeping over or when family gathers together. Some even sleep with sheets and blankets on the floor and everyone is simply happy.

There was a spontaneous way of living that I knew for sure I wouldn’t be able to find anywhere other than Syria. I was a teenager, but I felt like an adult teenager who was reflecting on these memories and trying to see the light in what was coming next.

At that time, war was accelerating in Syria. A big part of my family was still there. My parents and I were mentally with them all the time. When the language school was complaining about the fact that my parents’ language skills weren’t noticeably progressing with time, my parents were spending whole evenings trying to get any sort of connection with the family inside Syria and watching the Syrian news, following where the next bomb was being dropped. 

It wasn’t easy for me to make friendships in my new school. I missed my friends in Syria. I missed chatting about our everyday problems, our plans for the future, and how we would attain our dreams. In Denmark everything seemed different, and the teens’ daily problems were very different from mine. Partying and drinking was a major part of their free time. 

I was missing my family, although the fact that I was able to flee with my parents without losing any of them in Syria or on the way to Denmark felt a blessing – a great blessing that no one around me could understand.

During that time, the populist media, both in Denmark and Europe, was playing a major role in making the divide between ‘us’ and ‘them’ much bigger. The way refugees were presented as a mass of people moving into Europe, without highlighting their stories or their humanity, contributed to dehumanising them in their new communities.

I started reading more about populism and how it affects people’s approach to the refugee crisis, and then came across a foundation in Berlin that offered travel funds for projects on populism in Europe. I applied and was among 30 young people from across Europe who received funding. I travelled to Italy, Germany, Luxembourg and Austria. 

Through my travels, I tried to reach out to local people, whether in the streets, cafés or in hostels, and talk to them to find out how they thought the media in their country shaped their perception about refugees. I also conducted a lot of interviews with Syrian refugees and was overwhelmed by how similar our stories were. I’m still in touch with many people I met during my travels.

Sedra working as a medical student at Copenhagen University.

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Sedra Al-Yousef

Back in Denmark, I was interviewed by a high-school principal in a town near our home. It was the first time since we left Syria that I’d spoken to an encouraging person in my community who wasn’t from my family. He believed in me and insisted that I had to start at his school. I suddenly found myself taking A levels in a completely ‘blond school’. I was the first refugee to go there.

Doing A levels in a new language after a few years in Denmark wasn’t a piece of cake. However, the feeling of having someone who believes in you all the way made a big difference to me as a 19-year-old who had already gone through a mental breakdown.

Two years later, I graduated from my school, ranking one of the highest averages in the country, and qualified to enter the Faculty of Health and Medical Sciences at the University of Copenhagen. It has been the first step on the road that I always aspired to go down. However, the feeling of not being understood, not being good enough and not fitting in introduced me to the importance of empathy in our lives as humans.

Putting myself in other people’s shoes has become very meaningful for me – I probably wouldn’t have been able to do it if I myself hadn’t gone through the process of not being understood. This has also given me a new perspective through which I see my future medical career: a perspective that doesn’t only focus on my skills as a surgeon who wants to save human lives, but also understands the language of empathy before any other language. 

Today, believing in this compassionate view of humanity in this chaotic life we all live in, is what keeps my 21-year-old self balanced and hopeful.

Sedra Al-Yousef is a 21-year-old Syrian refugee living in Denmark. She’s a medical student at Copenhagen University and also works as a translator and mentor for other Syrian refugees.

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Author

Essay

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Sedra Al-Yousef’s photo frame

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As teenage refugee Sedra Al-Yousef grappled with rebuilding her life and education in another country, at the same time she used compassion and humanity to demolish populist anti-refugee myths.

Francesca Martinez

Editor

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Francesca Martinez's photo frame

Writer and activist Francesca Martinez presents essays by five women exploring what made them want to change the world.

Different Voices

Fleeing fear, defying prejudice

In November 2017, Gaia Pope, a teenager who had been failed by the justice and mental health systems, went missing. Her body was found after 11 days. Here, her cousin Marienna Pope-Weidemann proposes compassionate systems that listen to those in mental distress.

Content warning: Sexual violence, mental distress, loss. The day Gaia went missing, the world turned upside down. That was almost two years ago and it’s still not close to right side up. Gaia was the light of our lives. She was also a survivor of sexual violence, denied justice and ultimately killed by the very system that is meant to protect and care for us. 

Dorset Police failed to prosecute her rapist – a known child sex offender – and convinced her not to appeal. Like so many, she was also let down by the mental health system, which detained and then abandoned her. On 7 November 2017, Gaia disappeared. After 11 relentless days, she was found dead on a coastal path near our home. She was 19 years old. The coroner ruled the cause of death as hypothermia; we call it a death by indifference. 

Gaia’s story captured national attention because it speaks to a whole generation who know the horror of being denied justice after abuse; the pain of finding the courage to ask for help and then being ignored; the humiliation of being interrogated and stripped of the financial support we depend on. 

I write this from the perspective of someone with five years’ experience caring and advocating for loved ones enduring extreme mental distress and as someone with my own lived experience. These two perspectives aren’t separate for me, or for countless others: both are rooted in the realities of poverty and oppression.

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Gaia Pope

I often have nightmares. There’s one that repeats a lot, something between a nightmare, a memory and a fear for the future. The life of someone I love is in imminent danger. I am in a softly lit room, phone in hand. All I have to do is call a number, a very important number, and the system will spring into action and take care of us.

I call. It rings. No answer. I call again. “I’m sorry, we’re unable to get to the phone right now,” says the voicemail. “We are only open between blah and blah o’clock.” But it is between the hours of blah and blah. I call again, and again. The light starts to flicker.  

Icy panic flushes through my limbs and pulls down on my organs, like when you crest the summit of a rollercoaster. I start calling other numbers; I’ve got at least 25 of them in my phone, different doctors and nurses and teams, because this person that I love has been passed from one acronym to another for a long time and the numbers have really stacked up by this point, but not one of them will answer me. The room darkens.

Finally, a human voice greets me with a surreal neutrality. I take a deep breath, push down all my desperation and anger over broken promises, knowing that if I show any emotion I’ll just be told to calm down. I try not to focus on the irony of the fact that I’ve learned not to show any signs of mental distress when dealing with professionals whose job it is to support those experiencing mental distress because I know they will dismiss me. I tell them we’re in crisis, we need those plans and promises fulfilled. 

An approach that values lived experience is vital not just for those using the system, but for fixing the system itself.

I use all the right acronyms, all the right words, like “safeguarding” and “imminent risk”. You have to use their language. It’s like talking to a really primitive version of Alexa. The voice tells me they won’t be sending anyone to help. It tells me it has no record of any promises made and not to call again because I’m making a nuisance of myself. Now I’m in total darkness.

All dignity evaporates and I start to beg – not for the first time. Please. Someone is going to die. Please do something, please. Help us. The voice says something about a week next Tuesday. I tell them that’s too late. The voice asks me how I dare tell it how to do its job. It tells me that if I ring again, the police will be called, then hangs up. 

I wake with incalculable rage heaving in my chest. I summon the energy to sob, just to get out some of the adrenaline. 

I know the dream will follow me all day like a dark cloud. I know I’ll jump at loud noises, stare into space, compulsively pore over some records for no particular reason other than to remind myself that all these things actually happened. 

Bad things happened, no one came, and Gaia died; and those of us left behind, stumbling under the weight of our grief, must still depend on the system that let her die; that has let many people die. 

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Floral tribute for Gaia

It is extremely difficult for carers to speak out. We too are dependent on mental health services. When you’re starving, you don’t bite the hand that feeds you, even if it’s only tossing you crumbs. 

Five years engaging with community and residential mental health services has taught me that ‘family engagement’ is usually an outsourcing programme. There are rare exceptions – shining lights in the darkness – but they are bound and gagged by the system they work in and often burn out. The rest talk to you like they know everything and you know nothing, not even about your own pain, your own family. 

It’s taken me a long time to grapple with the reality that I might need support myself. In my mind I was the advocate. I hid away in that role, trapped in the same soundproof box I built for myself when Gaia was missing, and I spent every hour of the day organising searches and giving interviews so I wouldn’t have to stop and hear the screaming silence of the absence of her voice. 

Part of what gave me the courage to acknowledge my own pain, my own story, was the stories shared by others. They started coming through a couple of months after the Find Gaia Facebook group became Justice for Gaia, highlighting the intersectional links between austerity, inequality and sexual and domestic violence. I was speaking and reaching out because I wanted Gaia to be heard, and soon people started talking back. 

“My dad tried to throw himself off our balcony, and two years later he’s still on the waiting list. I’m afraid to leave him alone.” 

“I was raped by a colleague and my boss has threatened me with disciplinary action if I speak out or access counselling.” 

“I’m fighting for an inquest for my teenage daughter who died a preventable death in a secure mental health unit, but I can’t afford a lawyer.” 

“My grandchildren are being beaten at home. I’ve got stacks of evidence here, but I’m being ignored by social services and threatened by the police.”

That was when I realised how many of us are trapped in this nightmare together. I’ve been involved in anti-austerity campaigns for almost a decade, so I thought I knew how bad things were, but I was wrong. 

Since 2010, several billion pounds’ worth of cuts to essential health and social services have been linked to over 120,000 deaths in the UK; I thought funding was the issue, but I was wrong about that too. Austerity only explains why the capacity of mental health services to help has been crippled, especially for marginalised communities, young people and rural dwellers. What it does not explain is why these services so often do active harm. This is an issue with roots far deeper than Tory austerity. 

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Artwork for Gaia

Evidence for the central role of trauma in mental health problems is overwhelming. There is a reason we are seeing a Black mental health crisis, with people of colour more likely to be sectioned, overmedicated and assaulted by those meant to care for them. There is a reason why almost half of women who have endured severe mental distress are survivors of sexual violence. There is a reason why almost half of those in need of benefits and half of those in financial debt are struggling with their mental health. 

The common thread is trauma, the impact of which is magnified not just by austerity, but also by a mental health system, which, while essential, is as unequal as the rest of society.

Last year, I was diagnosed with post-traumatic stress disorder (PTSD). Gaia suffered from severe PTSD, so I recognised the escalating cycle of insomnia, sleep disturbances, panic attacks and flashbacks that had already pushed me out of two jobs, my relationship and my home. 

PTSD means the brain is more sensitive to certain trauma-related stimuli. There’s no doubt that my brain works differently from the way it did before Gaia was taken from us. I metamorphosed from a confident, fearless and idealistic young professional to an insular, nervous wreck, unemployed and too exhausted to even apply for the benefits I was entitled to. I couldn’t bear to be told by one more person that my pain wasn’t worth anything, as have 125,000 others with mental health conditions who’ve had their benefits slashed. 

Did I suffer these symptoms because my brain is dysfunctional, as the medical model says (this is a widely followed theory that views mental health problems as physical illnesses, treating them with medication)? Was I broken by what happened? Or, after the trauma, did my brain adapt to a learned reality that we are living in an unjust world where the unthinkable can happen? 

It might not seem an important distinction, but knowing, loving and losing Gaia – whose trauma was incalculably greater than my own – has taught me just how important that question is. 

If my brain is to blame, I am what is broken here. The medical model justifies medicating people so they live and work obediently in an unjust world. It is the psychological equivalent of smashing square pegs into round holes until they fit – even if you break them in the process. There’s a strong financial incentive for this because drugs are cheaper than talking therapy. That’s where austerity comes in.

Maya, Marienna, Gaia’s mum Kim and Clara at Gaia’s festival fundraiser in 2018.

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Maya, Marienna, Gaia’s mum Kim and Clara at Gaia’s festival fundraiser

Like the murky inquest system we will have to navigate for the investigation into Gaia’s death, the medical model of mental health shifts accountability onto the oppressed and away from those oppressing them, whether that’s a family member or policymakers in government.

But if we take a trauma-informed approach, then the perpetrators of the trauma itself are to blame. They, and the systems that enabled their actions, can be held accountable. Whether that trauma is related to childhood or sexual abuse, hate crime and prejudice, structural racism, domestic violence, poverty or something else, suddenly your lived experience matters. An approach that values lived experience is vital not just for those using the system, but for fixing the system itself. 

We are wired for connection. Little is more central to our wellbeing than a sense that we belong, that our experiences are valued, our stories heard. By pathologising symptoms that are most often caused by trauma, the medical model obscures our view of oppression, upholds the status quo and silences precisely the people we should be turning to for leadership: those with lived experience. 

Some psychologists and users of mental health services are pushing for change. Mental distress – and the sharp learning curve that comes from any sustained engagement with the mental health system – can be a great teacher. Trauma can be a great teacher. But every day there are more deaths by indifference – another sibling, child or parent who has died waiting for someone to listen to their story. Dying along with them is the invaluable wisdom they’ve accumulated.

That I am slowly getting back on my feet is only thanks to the love and support of friends and family, and the inspiration Gaia gives me every day to keep speaking out. For me and many others the only thing standing between us and the void is the prospect of finally being heard, the possibility of change. 

Marienna Pope-Weidemann is a writer and activist based in London. She leads the Justice for Gaia campaign on behalf of her family.

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Marienna Pope-Weidemann

Marienna Pope-Weidemann's website

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Marienna Pope-Weidemann’s photo frame

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Marienna Pope-Weidemann, whose teenage cousin Gaia died after going missing, advocates a rethink of our systems, which currently fail many in mental distress.

A story of death, trauma and austerity

Unable to imagine a fulfilling future in the violent, strongly patriarchal environment of Mexico City, Laura Morales moved away. Here she describes how she now works to increase awareness of Mexico’s unfolding human rights crisis.

It was a hot day – rush hour in Mexico City. We were stuck in the normal infernal traffic for that time of day. The car was old, so no air-con, of course. We broke an unwritten rule: we rolled the windows down. A mistake. Two malicious hands entered the car, one through the left window holding a gun, pointed directly at my mother, the other through the right window, holding a knife. 

The second hand went for my neck and pressed the knife hard against my jugular. Adrenaline rush, heart pumping hard. In less than a minute the hands left. They left with everything we had: handbag, money, mobile phone and a few pieces of gold jewellery. They also left us feeling vulnerable, violated, afraid.

When I share this story with people in the UK, they are shocked. How is it possible to be robbed at gunpoint in the middle of the day? When I share this story with people in Mexico, they are not surprised; they think we were lucky. It could have been much worse, they say. For most people, it is.

I refuse to be one of the nine women killed every day or one of the sexual violence cases reported every hour to the Mexican authorities

In Mexico, violence of this kind is normal. Violence affects everyone, but women are disproportionately affected. Patriarchy is so rooted within the structure of society that, to many, this violence has become imperceptible. Mexico is a man’s world, in which, too often, women are treated as disposable objects. Sexual discrimination has been internalised to the point that many women believe they deserve the violence they are subjected to. The violence manifests in a number of forms, including physical attacks, verbal abuse, discrimination, rape and murder.

Why did I leave Mexico? Because I wanted to find out what it means to be a woman on my own. I couldn’t imagine a future in which I conformed to the sexist expectations imposed on me by my family and society. I wanted to do something, to have a career and achievements of my own. Back then I didn’t know I was a feminist. Today I know it was my feminist intuition that guided me here.

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Laura with her friends in Mexico

Why am I still in the UK? Because, since I left, violence against women in Mexico has taken a turn for the worse, and I refuse to be a number. I refuse to be one of the nine women killed every day or one of the sexual violence cases reported every hour to the Mexican authorities. And because I need to speak out, a privilege that in the current circumstances I wouldn’t have in Mexico.

The first few years in London were difficult. I still don’t understand how I made it. I remember that feeling of leaving everything behind. That feeling of not belonging. That deep nostalgia haunting my days and nights. The loneliness. The tears. The desire to give up and fly back home. 

Mexico is such a beautiful country. I took its beauty for granted when I was growing up, but I missed it deeply during my first few years here. I missed the people, the smiles, the colours, the smells, the traditions, the food, the weather, the feeling of being Mexican among Mexicans. And the traffic – I even missed the traffic. 

Eventually it became easier. A new life – with new friends, habits and hopes – began to grow. Doors opened for me and life became fascinating again. After several years of bouncing from one place to another, I had a stroke of luck. I was employed as an interpreter in a company that works with migrants. I encountered stories full of struggle and came to understand that my suffering was nothing compared to that experienced by many others. Migrating for me was a choice; for many others it’s not.

I loved what I was doing, and, after a few years, I set up my own firm. Becoming an immigration lawyer has deepened my empathy for migrants and their struggles – struggles most people never experience. Many migrants feel betrayed by both countries. The home country they love that couldn’t love them back, denying them the opportunity of a happy, safe and fulfilled life. And the country in which they arrive, which does not truly welcome them, however hard they try. The country in which they will never truly belong.

Helping migrants to fight the barriers imposed on them is such a rewarding thing to do, but it can also be heartbreaking. The hardest part of my job is explaining to couples and families that the strength of their love will not be enough to keep them together, because their income is not high enough. Delivering the pronouncements of an inhumane immigration system leaves me and my clients feeling powerless. 

Laura at a protest against the disappearances of Mexicans

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Border security and the reduction of net migration have been priorities for recent UK governments, and the system that has been developed has made income one of the main considerations. It has also turned many in society into border officers: employers, doctors, landlords, teachers, among others, are now forced to check the immigration status of migrants before interacting with them. This system and hostile environment brings about a lack of social cohesion and fails to protect vulnerable migrants.

As a migrant, I soon learned that making friends with fellow Mexicans in the UK was often a painful experience. So often they would return home. And every time they left, it felt like a lonely new beginning. To avoid this pain, I eventually stopped befriending Mexicans. 

After several years following this strategy, a shared love for our homeland brought a group of Mexican activists together. We all had in common the love for Mexico, the need to speak out, and the intention to remain permanently in the UK. We all wanted to share the stories of those less fortunate back home. We wanted to amplify their voices and draw attention to the suffering they were experiencing. 

That is how Justice Mexico Now came about – a small charitable organisation in the UK dedicated to raising awareness about the human rights crisis unfolding in Mexico.

I feel overwhelmed by the admiration expressed by others when I talk about my work. But helping migrants in the UK enables me to give others the opportunities that I was lucky enough to be afforded. And raising my voice for fellow Mexicans suffering back home feels like the least I can do with the privileges I now enjoy.

Helping migrants and fighting for justice is a way in which I find meaning, hope and refuge from all that scares me in this world.

Laura Morales is originally from Mexico City but now lives and works in London as an immigration lawyer mainly dealing with the Latin-American community. She is a co-founder and trustee of Justice Mexico Now (JMN), which is a charitable organisation that aims to raise awareness about the human rights crisis in Mexico.

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Laura Morales

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Laura Morales’s photo frame

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In Mexico, violence of all kinds – organised, street, domestic – is accepted as normal. From the UK, Laura Morales speaks out and fights to help those suffering back home.

Leaving Mexico and finding refuge in hope

Ten years ago, Jess Thom made a conscious choice to access the creativity Tourette’s syndrome gave her. That decision changed her life. Here she argues powerfully for an open-minded society that accepts and reflects all our minds and bodies. 

This year is the tenth anniversary of a hugely significant point in my life, the moment when everything changed and I became a radically different person. I’m not sure exactly when in it happened, but by the time the clock struck midnight on 31 December 2009, an incredible transformation was well underway. 

I spent that New Year’s Day on my own, so no one else would have noticed this monumental shift. They certainly wouldn’t have seen a physical change: my tics, the involuntary movements and noises I make, were as forceful and frequent as ever. I know my verbal tics were funny because I was writing them down – allowing me to do something I’d never done before: think creatively about life with Tourette’s.  

The journey to that moment hadn’t been easy. I’d spent years trying to ignore my tics and the increasing impact they were having on my life. My independence, wellbeing and self-esteem had all suffered as I tried in vain to make myself change. I got angry with myself for “not trying hard enough” and for standing out when I was desperate to fit in. 

The solution, as it turned out, was much simpler – it wasn’t my body or mind that needed to change; it was the way I thought about them. 

Brewing in Battersea, Touretteshero event.

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Brewing in Battersea, Touretteshero event

It was a conversation with my friend Matthew that catalysed this internal transformation. He described Tourette’s as a “crazy language-generating machine” and told me that not doing something creative with it was wasteful. We’d talked about Tourette’s many times before, but this sentence captured my imagination in a new way. One fragment of conversation fundamentally transformed how I understand myself, my body, and my experiences. Ultimately it led to the creation of Touretteshero in March 2010. 

Through my work with Touretteshero I’ve come to appreciate that the patterns of shame and fear that prevented me engaging positively with Tourette’s for so long are deeply ingrained in our society – it’s not just me that needs to think differently about difference – we all do. 

By the time I was ten I’d internalised the array of ableist messages that surrounded me. I’d only seen disability represented as tragic or threatening, from the collection box outside our local shop depicting an angelic, calliper-wearing girl, to the disabled and disfigured Bond villains on my TV. It’s taken me decades to consciously unpick these ableist attitudes, and that’s because, in a society that places normative bodies and minds above all others, they have total dominance.

Online dictionaries define supremacy as “the state or condition of being superior to all others in authority, power, or status”. When disabled people are systematically excluded and denied power, it is entirely appropriate to describe that system as a normative supremacy. 

The exclusion of disabled people is presented as the ‘natural order’, but it’s not; it’s a choice we are all actively making.

Evidence for this is borne out in statistic after statistic. I work in the arts, and while 22 per cent of the population identify as disabled, we make up just 4 per cent of the arts workforce, as Arts Council England has reported. I’m not aware of a single artistic director of a mainstream venue that identifies as disabled. 

Living in a normative supremacy has a very real cost for disabled people, socially, emotionally, physically and financially. Hate crimes against disabled people have increased by 50 per cent in the last year. Tory politicians campaign for disabled people to be paid less than minimum wage, while living with an impairment costs on average an extra £6,840 each year. 

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It’s the dominance of normative bodies and minds that mean I can only access 18 per cent of the London Underground or that 80 per cent of eligible learning-disabled women have not received a smear test. It’s in this climate of hostility that a stranger recently felt entitled to grab my wheelchair and whisper in my ear “I’ve seen you standing” – the implicit threat being that I was a fraud ready to be unmasked. 

The exclusion of disabled people is presented as the ‘natural order’, but it’s not; it’s a choice we are all actively making. If we tolerate systemic oppression and don’t work to challenge it, we are all complicit in the harm that it causes. 

The conversation that changed my thinking could easily not have happened. It showed me that what we say to each other matters. Our attention, energy and kindness have power. At a time when almost two-thirds of the general population say they feel uncomfortable talking to a disabled person, it’s essential to use open, compassionate conversations as a way to fight fear and prevent it from cluttering our communities. 

Taking an inclusive approach doesn’t need to be complicated; it’s the difference between assuming everyone does everything the same way and understanding that we all do things differently. Don’t leave access to others. Welcoming difference in everything we do creates positive social change and dismantles disabling barriers. 

Being able to give and receive solidarity is one of the things that makes me feel most hopeful for our world. Amplifying the voices and perspectives of people at the intersections of oppression has the power to create new connections, increase understanding and move us towards a world built on social justice.  

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It was seeing incredible work by disabled artists like Matt Fraser, Liz Carr and Francesca Martinez that rescued me from my own internalised ableism. Seeing my experiences reflected on stage helped me feel confident that being an artist was a possibility for me. After one particularly distressing experience at the theatre, I decided to make a show myself so I could occupy the one seat in the house I knew I wouldn’t be asked to leave. 

The art, music and activism that’s emerged in response to normative supremacy is incredibly rich. You can explore disability culture through platforms like Disability Arts Online and the Disability News Service, and I strongly recommend checking out Access Is Love, writing by Mia Mingus, Imani Barbarin and Matilda Ibini and work by artists like BLINK Dance Theatre, Creative Electric, Tarik Elmoutawakil and Heart N Soul. 

Ten years ago I started what felt like a small personal project to recognise my tics and the spontaneous creativity they gave me access to. Little did I know how big this would become, or that it would lead to a book, events, stage shows, TV programmes and countless other opportunities to change the world, one tic at a time. 

In the last decade I’ve learned that if something isn’t working, I have the capacity to change it. And that’s not because I have any special qualities or superpowers, but because we are all capable of creating change. Together we can shape a world that reflects and respects the diversity of all our bodies and minds.  

Artist, activist and part-time superhero, Jess Thom co-founded Touretteshero in 2010 as a creative response to her experience of living with Tourette’s syndrome. She is also a Wellcome Trust Engagement Fellow

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Jess Thom

Touretteshero website

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Jess Thom's photo frame

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Jess Thom spent years trying to ignore and suppress the tics of Tourette’s syndrome. Read what happened when she decided to celebrate them instead.

Rejecting shame and a decade of change

Rob Bidder is an artist based in south-east London and a Visitor Experience Assistant at Wellcome Collection. He also plays music in a ramshackle manner. He is a Gemini with a Libra ascendant.

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Rob Bidder

@robertbidder

Artist

Comic

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Massage, Rob Bidder

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Sometimes the road to relaxation is paved with discomfort

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Sport

Body Squabbles

Massage

There’s power in knowledge. Closing her series on pain and endometriosis, Jaipreet Virdi celebrates the magazines, online communities and self-help books that help women share information on their condition and its treatment. 

I first learned about endometriosis the same way I learned about health and wellness: from articles in Self magazine. The magazine was great for teaching me new workouts and recipes, but with hindsight, I also realise it helped trigger my teenage obsession with achieving my ‘best body’ and confidence. That is, a slim, healthy body cultivated by empowerment. 

Today, women with endometriosis have more access to better information than ever before. Jaipreet Virdi applauds the shared stories, online communities and self-help books empowering women in pain.

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Rejecting shame and a decade of change

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Painful realities

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Pain and the power of activism

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Pain and the power of activism

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