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Unruly Bodies; Remarkable Lives: Noor Inayat Khan: Muslim “princess”, author and disabled spy

“Liberté.”

This is reportedly the last word Noor Inayat Khan (1914 – 1944) ever spoke, in defiance at the hands of her German captors in the heart of Dachau concentration camp. 

It was a fitting epitaph for a woman who’d spent her early years fleeing across Europe as a refugee, and eventually gave her life as one of the first female agents to be parachuted behind enemy lines in WWII.  

While I was researching this remarkable woman, I was struck by the dichotomies in her life. An ardent pacifist thanks to her father’s Sufi teachings, she nevertheless volunteered for the Women’s Auxiliary Airforce in WWII. She abhorred violence, yet found that shooting and loading a pistol helped her with “concentration and meditation”. 

And while she was determined to do her bit to help end the war, as a passionate supporter of India’s independence, she boldly told her air force recruiters that after it was over, she might be obliged to fight for India against the British. 

In that one action alone, we can see that she was a woman of principle, and those principles were forged both by her family, and her experience of displacement as a child.

The constant refugee

The early years of Noor’s life were marked by frequent movement across Europe. She was born in Russia to an American mother, the poet Pirani Ameena Begum, and the Indian musicologist and philosopher, Inayat Khan.

On her father’s side, we can trace her family lineage back to Tipu Sultan — the ruler of the kingdom of Mysore in the 18th century — which is why Noor came to be known as the Indian or Muslim Princess. 

But her famous ancestry didn’t protect her from persecution.

Not long after her birth, the Russian Revolution caused the family to flee to the relative safety of England, but their peace there didn’t last for long. While she was still very young, the British government began to regard her father’s Sufi teachings and pro-India beliefs as dangerous, and they fled again to settle in France. 

Still, Noor’s home would yet again prove to be an unsettled one, and when Germany invaded France at the start of WWII, the family escaped back to England on one of the very last boats to make the journey. 

Children’s books and secret codes

Despite the unsettled political tides that uprooted much of her childhood, before WWII, Noor led a peaceful life in Paris, where her work revolved around music and literature. There, she studied child psychology at Sorbonne University, and, following in her father’s footsteps, composition at the Conservatoire de Paris. 

Later, she would enjoy a successful career as a children’s author, translating and adapting the Twenty Jataka Tales, a collection of animal fables inspired by Buddhist literature. Her writing was so popular, in fact, that many were broadcast nationally by the Children’s Hour of Radio Paris, and she was a regular contributor to magazines. 

In another world, perhaps we would have had more of Noor’s stories to remember her by. But from the moment she arrived in a London that was already burning, a new path was laid out before her. 

Both Noor and her brother Vilayat were committed pacifists, but it was this that led them to volunteer for non-violent service, believing that by ending the war quickly they would save many lives.

On November 19th, 1940, Noor joined the Women’s Auxiliary Airforce and was trained as a wireless operator, before being recruited by Military Intelligence for the Special Operations Executive Branch. Little is recorded about her disability, but accounts of the severe and painful swelling in her hands, which led to a very distinctive style of tapping out Morse Code, suggest that she lived with a circulatory disorder that caused near-constant chilblains. 

This crucial detail could perhaps have saved her life, but by the time the alarm was raised it was already too late. 

A tragedy in blue

On the night of June 16th, 1943, Noor crossed the English Channel in a small Lysander plane with two other female agents. Her aim was to join a wireless circuit, transmitting information out of occupied territory and back to the Intelligence Services in Britain. But within a week of her return to Paris, every other member of her team was discovered and arrested.

Noor was advised to flee back to England, but as the only remaining radio operative in Paris, she stayed, sending information across the airwaves that ultimately helped 30 Allied airmen escape. For three months, she single-handedly ran a cell of agents across Paris, and in the end it was a heartbreaking human tragedy that led to her capture.

Pierre Viénot, a fellow resistance fighter, recounted in his private memoirs that with the Gestapo closing in, the resistance tried to hide her. They took her to a hair salon and procured a whole new wardrobe, but her love of the colour blue gave her away. Despite the disguise, it was well-known that Noor favoured blue, and her new clothes didn’t deviate from that preference. 

Despite their best efforts, she was arrested and taken to the Gestapo Headquarters, where she immediately attempted to escape out of a window and down a gutter. It was at this point the alarm was raised, when another operative noticed that although they were still receiving messages, Noor’s distinctive Morse Code style had changed. 

The warning wasn’t heeded. Noor would go on to endure 10 months of torture at the hands of the Gestapo, before she was eventually transferred to Dachau and executed — dying with liberty on her lips.

It was a sad end to a remarkable life, but Noor’s bravery has been recognised.

“I wish some Indians would win high military distinction in this war,” she once said. “If one or two could do something in the Allied service which was very brave… it would help to make a bridge between the English people and the Indians.”

Despite her ordeal, Noor never betrayed a single piece of information to her captors. In 1946 she was posthumously awarded the Croix de Guerre with Gold Star, the highest civilian honour in France. And in 1949 she received the George Cross, the highest civilian honour in Britain. 

In 2012, a bronze bust of Noor was installed in Gordon Square Gardens, London, and in 2020 she also received a Blue Plaque on the Bloomsbury home she once lived in. So many years after her death, she was still remembered warmly by her fellow servicewomen.

“Noor (Nora to us) and I were on the same wireless operator’s course in Edinburgh,” said Irene Warner, a former member of the Women’s Auxiliary Airforce. “Although she was unable to hold the Morse key properly because of severe chilblains, she persevered and passed out with the rest of us.

“She was a very brave woman.”

Further Reading and Watching

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Box Ticking exercise: Non-disabled people will never get the importance of disabled Barbies

Box-Ticking Exercise is a monthly(-ish) column by Melissa Parker in which she dissects ableism and the portrayal of disability in tv, film and media. Being M, this is of course all done with her pen as a scalpel.

It was a moment of catharsis in an aisle filled with garish colours. An emotional pull, a toy that looked a little like me—a Barbie in a wheelchair—in plastic flesh, my eyes filled with tears —I could almost see my once chubby little fingers reaching for it.  

It wasn’t until days later that I faced a jarring reality that often hits home profoundly and unexpectedly—a friend I told about this little piece of plastic wish fulfilment looked utterly unmoved. She expressed confusion about such an emotional response.  

Non-disabled people can never fully understand it — never fully get it.  

They are the standard; the impossibly thin blonde looked just enough like them. They didn’t have to mush together, remove parts or create haphazard DIY mobility aids forged out of household objects to see themselves more fully represented. They didn’t have to learn that their body was fundamentally not quite right.  

I remember being taken to a toy store as a child — an enchanting experience children remember for the rest of their lives. For disabled children, it’s where self-doubt and self-recrimination can begin.  

On top of internalising messages about cartoonish and autonomically unattainable bodies — perfectly symmetrical faces, pert noses and flawless skin — the early lessons of ableism and racism also begin to seep.  

At least we are beginning to break down ideas about beauty, skin tone, body shapes, hair types and disabilities.  

As Hollie-Anne Brooks states: “As a plus size woman, I was never represented in dolls growing up, but now, as an adult, I had all these options. It helped me figure out that I was absolutely perfect the way I am, and I hope future toys do that for other children too.”  

Shalida A. Askanazi narrates her experience: “I was so happy to see it, I actually cried. Growing up, there was a wheelchair Barbie, but I only ever remember her being white.”  

She points out that disabled black children and adults more deeply experience the problem, “people who are disabled have such a hard time seeing themselves already, but it’s even harder when you’re black.”  

She conveys the emotions many disabled children internalise from their earliest interactions, ingrained within their earliest memories. “Not seeing myself in toys as a child definitely left me with low self-esteem. I always felt like I was in the zoo from people staring but also ignored by the lack of representation.”  

For Shalida, one way of healing her “inner child” was buying the stuff she couldn’t afford as a child or that didn’t exist. “There’s no age limit on toys. That person isn’t disabled, so they can’t relate to not having a doll that looks like them. For us, it’s a huge deal and rightfully so.”  

Barbie may be dismissed as a relic of a different age, but she remains an iconic children’s toy reflecting many different generations. Thus, she is a mirror of us over time — even as that mirror has reflected some uneasy truths.  

These toys — handled with love and rough hands by their young owners are a start. A disabled Barbie on a shelf is an imperfect beginning. Disabled children need these normalised formative experiences to see themselves fully fleshed out and understand their history.  

It’s a method of introducing their cultural heritage, a pride in their disabled bodies. They should symbolise a new time when disabled children, even in their earliest moments, don’t learn the half-truths of history.  

This means reading more books, being open to discussing complex topics and using age-appropriate language to discuss ableism. In addition, there must continue to be a conscious effort to include representation and diversity in anything offered to all our children.  

As Hollie-Anne mentions about her understanding of disability history, “I knew nothing, and it was only when I became disabled in my 20s that I started to understand. I got bought a wheelchair Barbie, I think, by my mum, not long after I became a wheelchair user, and it helped me unpick so much.”  

The experience has encouraged her to think about her future children and how they will learn about disabilities — through their earliest interactions with toys.  

From the “cripple Suffragette” to the wheelchair user Black Panther, disability history is so often neglected. Disabled children have been taught, passively or by design in our schools, that history was made solely by the non-disabled and that every right we ever gained was not taken by force, crafted by a disabled hand, but bestowed on us by non-disabled pity.  

Non-disabled people don’t understand it because they have seen themselves fully reflected in every aspect of life.    

They will never fully get it—will never truly understand.

But that’s because it’s been about them—their standard, their reflection—for so long, and we need to build the same foundations for disabled children.

These Barbies are little pieces of plastic wish fulfilment — an imperfect beginning, but the beginning that’s so important in shaping how disabled kids see themselves.

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Columns features unruly bodies

Unruly Bodies; Remarkable Lives: Annette Kellerman- Nude film star and disabled mermaid

When I started to accept that I was disabled, one of the first things I did was turn to the internet for examples of successful disabled people. Perhaps this is a common experience — suddenly becoming part of a minority group, and needing to reassure yourself that people like you have thrived in the past.

What I discovered was a long history of collective and individual pain, but also of resistance and triumph.

Since then, I’ve collected a wealth of information on disabled historical figures. Some are well-known, while others have flown under the radar of popular history, forgotten by many and remembered by few. 

The more people I uncovered, peeling back histories that often erased their subject’s disability, or discovering names and lives that were entirely new to me, the more I wanted to share them.

So, Unruly Bodies; Remarkable Lives was born.  

There’s always a risk in writing a column like this, that it will veer into ‘superhuman’ territory. That in writing about disabled success, I inadvertently popularise the view that all disabled people can do anything, if we just set our minds to it. Of course, this isn’t the case. In the same way that it would be impossible for every abled person to run as fast as Usain Bolt, disability isn’t a monolith.

We all have different abilities, access needs, support systems, and environments, and each of these shape how much we can achieve.

I want to be clear from the beginning that exceptionalism shouldn’t be a prerequisite for access, support, and success. Disabled people, like every other person, shouldn’t have to be extraordinary to be worthy of equality or equity. This column, then, seeks to uncover disabled historical figures without shying away from the barriers they faced.   

It’s a celebration of the tenacity of unruly bodies, the political and social resistance inherent in disabled lives, and the exceptional figures who raised their voices against a world that was designed to silence them. After all, how can you be something if you can’t see it? I want these people to be seen, and I hope you’ll enjoy discovering them too. 

So shall we?

Annette Kellerman: Silent film’s disabled mermaid

“It’s the most ghastly thing in the world to be called the perfect woman,” Annette Kellerman (1886 – 1975) told an interviewer in the year before her death. “Every other woman was saying [of me], I don’t see that she’s anything.” 

Although they might not have seen her as anything, Annette Kellerman was an Edwardian trailblazer, who credited her success as a swimmer, vaudeville star, silent film actress, and swimwear pioneer, to her early years of disability. 

“My early physical misfortune turned out to be the greatest blessing that could have come to me,” she wrote in her book, How To Swim (1918). 

She was speaking of the childhood rickets that had severely weakened the bones in her legs, and left her needing steel braces to walk. At the time, doctors told her father that she would never improve. Despite this prognosis, a single doctor advised them that swimming might help her to build muscle, which would compensate for the permanent damage to her bones. 

Although she was resistant to the idea at first, writing of her “humiliation” over “exposing my weak and ill-formed legs,” this early hydrotherapy proved to be the start of a lifetime of performance and success. 

“Only a cripple can understand the intense joy I felt, as little by little, strength began creeping into my legs,” she wrote of those early years.

The necessity of building her strength meant that Annette rejected the ideal that women ought to be naturally slim and delicate. Instead, she defied convention to champion her body as something that was muscular, ‘masculine’ in build, and strong. 

“I’d caught the mermaid fever,” she said.

Pretty soon, she was winning major swimming championships in her native New South Wales. She even set the world record for the woman’s 100-yard swim at the tender age of 16. And in her late teens, she began performing as a swimmer and high-diver, delighting the crowds who came to watch her at the Melbourne Exhibition Aquarium — then the largest glass tank in the world. 

Already something of an outsider because of her disability and her gender, Annette first made her name in long-distance swimming. She was one of only a handful of women to attempt to swim the Channel between England and France, and in her first effort, she made it further across the water than any of the men who swam with her.

But despite her success as a competitive swimmer, performance was where Annette’s heart truly found its home.

In London, she developed a unique vaudeville show, pioneering the art of synchronised swimming, and incorporating diving, ballet — both on-stage and underwater — wire walking, comedy, and music into her acts. Multi-talented, she performed for the Queen of England at the London Hippodrome before moving to the USA in 1907.

Before long, “the human mermaid” had taken America by storm. Not only was her vaudeville act in high-demand, earning her many admirers and thousands of dollars a week, she also made her debut as a silent film star. 

Neptune’s Daughter (1914) — for which she dived 28 metres into a pool of live crocodiles — became one of the first films to gross over $1 million at the box office. And Annette broke new boundaries again, when in A Daughter of the Gods (1916), she became the first woman ever to appear nude on-screen.

Many years later, she would demur that, in fact, she had been wearing a pair of incredibly thin tights at the time, but the accolade stuck — and she did little to challenge it. 

In 1918, this fearless performer and athlete even incorporated an early Drag King performance into her vaudeville act. Becoming a character that she called ‘The English Johnny’, she wore a tailored suit, top hat and monocle on-stage in front of thousands of paying crowds. 

Such risqué choices did little to dampen her appeal, and she was later nicknamed the Queen of Modern Vaudeville.

But if Annette Kellerman challenged gender stereotypes on-stage and in-water, she was equally fearless in the real world as well. During her long-distance swims, she realised that women’s swimwear, which was designed for modesty and usually featured a bulky dress and pantaloons, was far more difficult to manoeuvre in than the men’s skin-tight wool. 

Frustrated by the restrictive material, Annette designed a new one-piece swimsuit for women. In 1907, she was arrested on Revere Beach, Boston, under a charge of “indecency”, for wearing her new design that ended in shorts above the knees.  

Eventually conceding slightly to the Edwardian demands for modesty, Annette sewed stockings below the shorts to minimise the amount of skin on display; although she remained firmly against what she called the “pseudo-moral restriction” of designs that discouraged women’s physical activity.

“There is no more reason why you [women] should wear those awful water overcoats — those awkward, unnecessary, lumpy ‘bathing suits’ — than there is that you should wear lead chains,” she wrote. “Heavy bathing suits have caused more deaths by drowning than cramps …Anyone who persuades you to wear the heavy skirty kind is endangering your life.”

Later, she would launch a radical new one-piece swimwear line, and within a few short years, her designs would become the accepted women’s attire for the beach or the pool, helping to usher in a new era of women’s freedom to swim.

From being a self-described “sickly child” who was never expected to walk without braces or pain, Annette Kellerman’s early access to hydrotherapy led to her becoming an international film star, an aquatic protégé, and the “Million Dollar Mermaid” who revolutionised women’s equality in sports, on-stage, and on the beach. 

Watching videos of her performing her underwater ballet in the 21st century, it’s difficult to imagine that this woman could ever have been anything other than a pioneer — or a mermaid. 

Further Reading and Watching

Is there a disabled figure from history you’d like me to write about? Leave a comment below, or come find me on Twitter

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Editors Notes: IPSO Told me Nobody Complains About the UK Media’s Ableism- so Let’s Prove Them Wrong

rachel, a white femme with ginger hair sat at the head of a conference table with their laptop in front of them and staring forwards looking mad. Their arm is resting on the desk and their hand is bent forwards. They're wearing big round glasses, watermelon earrings and a dress with planets and spaceships on it
I'm both angry and disappointed

One of my goals this year is to make a lasting change in the reporting of disability in the media. So when I secured a meeting with the head of standards and regulation at the Independent Press Standards Organisation (IPSO) about guidelines for reporting disability I thought I was one step closer. Oh, how wrong I was.

IPSO regulates some of the biggest papers in the UK, including Daily Mail, The Sun, The Times, The Telegraph, and Metro – some of the worst offenders in the last decade of casual and downright overt ableism.

But instead of discussing potentially coming up with guidance, I was told by the biggest print media regulator in the UK that there was no remit for this.

Because apparently, nobody complains about the way the media writes about disabled people in this country.

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Box-Ticking Exercise Columns opinion

Christina Applegate and the Power of Disabled Hollywood Stars

Christina Applegate has rarely been off our screens throughout the different eras of her life and ours. After emerging in commercials and a soap opera as a child, she played a teenager on the successful and long-running American sitcom Married with Children. Then, she won an Emmy for her guest appearance on Friends. Other starring roles have included the Anchorman films.  

Over several years, as she recounts it, the tingling and numbness she was experiencing worsened. Finally, she was diagnosed during filming for another successful TV show, Dead to Me, that captured another era of life. She had Multiple Sclerosis.   

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Columns Pain Chronicles

Pain Chronicles: The Real Reason why Disabled People Exercise Less

Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown-in chats with her mum Shaz, and other friends too, along the way. 

One of the main guarantees of disabled life on the internet is being asked “Have you tried yoga?” I don’t know anyone who hasn’t been asked that question. 

In fact, if I had a pound for every time I’d been asked that I’d have too much money for the DWP to give me the disability benefits they don’t give me anyway. 

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Why do Disabled People Have to be Tiny Tims at Christmas?

a small green puppet frog

Charles Dickens introduced the young Tim Cratchit to the world generations ago. Ever since, the character has been an emblem of A Christmas Carol.

Whether humans, cartoons, Muppets or a single puppet in a cast of non-disabled actors, they all have one tie that binds them — they are the sickly but sanguine child whose plight helps convert miserly, seemingly non-disabled Ebenezer Scrooge.    

There is a dimension of perceived honesty and truth to that description that disabled people are still wrangling with so many years later — the plight that helped to improve Scrooge.    

Dickens was the author of a disabled character whose sole purpose was to be an object of pity and to beg for goodwill. 

A character that, in his time, would have been an honest representation of the place, so many disabled people held. But we can’t claim there has been a radical revision in attitudes or ideals across the eras — they simply lie underneath an increasingly worn veneer of respectability.     

Tiny Tim doesn’t develop from a sickly young boy to a frail young man to a middle-aged destitute beggar. Rather, little Tim exists at one point in his life.  

He is the idealised Dickensian child — a staple of the Victorian era. But his modern twin hasn’t altered in the collective public consciousness. So, in whichever period, in whichever form, we see Tiny Tim. We know that we, as disabled people, are tied to him, our throwback twin — but we grew up.  

His presence is still felt in every report, every charitable piece edited just so – sickly but sanguine – to warm the hearts of the non-disabled. 

His father, Bob Cratchit, recounts Tim’s words. “He told me, coming home, that he hoped the people saw him in the church, because he was a cr*pple, and it might be pleasant to them to remember upon Christmas Day, who made l*me beggars walk, and blind men see.” 

No significant change or development has occurred since these words were committed to the page. Disabled children are still being used as props and mined mercilessly for their weight in inspiration porn.  

As a commonplace Victorian character, Bob continuously moralises his son’s death and disability. 

Yet, the sentiment expressed in this passage feels thoroughly modern — this is still how disabled children are represented — until age transforms them into parasites. 

“I know my dears, that when we recollect how patient and how mild he was; although he was a little, little child, we shall not quarrel easily among ourselves and forget poor Tiny Tim in doing it.”  

 In the modern world, Tiny Tim would be excellent fodder for a festive charity advert as a voice-over narrated his tale. His trauma would be reworked neatly with melancholic though stirring music. 

Or he might materialise on breakfast television to be dubbed inspiring — and patted on the head dismissively. Of course, there would also be a place for him, wrapped in a Christmas jumper at the end of any bland national news bulletin.  

He doesn’t develop from a sickly young man to a middle-aged destitute beggar. But he walks with a crutch and looks frail in both productions and illustrations.

However, know from bitter experience that Tiny Tim would transform into an adult who might be labelled a scrounger — a liar, a fraudster for daring to be both disabled and an adult. 

Those images are seemingly independent yet entangled, most disabled people have experienced a shift when they are no longer perceived as worthy of protection.   

Before his intervention takes effect, Scrooge quips that government-funded institutions should be sufficient to help impoverished and disabled people.

The Ghost of Christmas Present shows him the reality: they are grave places and nowhere near enough — not funded well enough or given the proper support. 

The reality is that Tiny Tim would age out of societal sympathy. The divide between who we are and who they want us to be is never more evident than at Christmas. He would be a victim of the benefit scrounger rhetoric, which affects all disabled people’s lives.   

Suppose the adult Tiny Tim lived in modern times. In that circumstance, he might receive the Christmas bonus from the DWP but not in line with inflation.

Not without having to endure some non-disabled pre-conversion Ebenezer Scrooge-style rants, which speak longingly of ripping us back to some form of an idealised Victorian era. 

He might have to beg for help to fund equipment once he outgrew his crutch and be told he was lying about his disability across the media. 

In column inches, tweets and on the street – language is chosen more carefully and insidiously now than Charles Dickens’ work conveys. Still, it’s no less ableist and regressive.  

Positively Dickensian? Positively modern. It reflects the phrasing and sentiment seeping into some newspapers, mangled tweets, and the warped observations of media commentators. 

It might be pleasant for them to remember on Christmas Day that we are not here to be puppets or Muppets in Scrooge’s redemption arc — or their warped Dickensian fantasies.   

Disabled people deserve to exist outside of how non-disabled wish us to appear at Christmas and all year round – god bless us everyone!

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Pain Chronicles: Despite it all, we Deserve to Have the Christmas we Choose

a close up of two glass ornaments on a christmas tree, a swan and a stag, facig each other. The lights on the treee surrounding them are bright blue

Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown-in chats with her mum Shaz, and other friends too, along the way. 

Trigger warning: This piece contains the sudden death of grandparents, covid death and discussion of bereavement. Please take care.

If you live in the Northern hemisphere, Christmas comes in the middle of winter. The long nights, the cold weather, the having to leave the house while it’s still dark outside. 

Pain and fatigue often get worse in the cold (as well as the warm, which is why I much prefer Autumn!), and worsening depression and anxiety rear their heads in the form of seasonal affective disorder (SAD). 

I’ve a rather personal bone to pick with winter as well. In 2017, on Christmas Eve, and entirely unexpectedly, my nan died.

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Box-Ticking Exercise: Children in Need Shaped me, but I Wish it Hadn’t

Box-Ticking Exercise is the new monthly(-ish) column by Melissa Parker in which she dissects ableism and the portrayal of disability in tv, film and media. Being M, this is of course all done with her pen as a scalpel.

The silence pulls you in at the moment the camera lingers on a distressed child. Then images of disabled children in despair are artfully, soullessly, woven and twisted around the generically insincere Coldplay song “Fix You”, breaking the accidental, fleeting moment of compassion. 

This is Children in Need, the yearly telethon for disabled children.   

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Disabled and Sexual: How Decades of Overmedicalisation Influenced my Sex Life

a medical professional holding the hand of a patient who is lying in bed

TW: This article contains mentions of child and adult sexual abuse and assault as well as medical ableism and neglect, please take care when reading.

Disabled and Sexual is a column by Hannah Shewan Stevens which explores all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.

With the ominous chime of cheap plastic curtain rings, the doctor separates us from my mum. After placing me on the bed, she examines my vulva and conducts what I later learned was a hymen check.

Frozen in place, I submitted to her ministrations and silenced the protests trying to escape my head. “Just do what you’re told,” I thought. “Be a good patient and then you can go home.” I was eight years old. 

Medical professionals have long held a monopoly over my body. From being poked and prodded to quizzed and demeaned, they have dictated how my body is treated, how its symptoms are managed and how much information I receive about my diagnoses. 

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