My thoughts on Tom Shakespeare’s talk: “Can disabled people fly high?”

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We seem to live in a society with very polarised attitudes towards disabled people. On the one hand, disabled people are often told that they are “brave” or “inspirational”, even when they are just doing normal, everyday things non-disabled people take for granted. On the other hand, they are being stigmatised and labelled “scroungers” by a government increasingly determined to slash the welfare bill by driving through cuts to disability benefits and scrapping and limiting funds designed to enable disabled people to work, study and lead independent lives.

I recently went to a fascinating talk by Tom Shakespeare, the academic, disability rights campaigner and sociologist, who explored these themes about social attitudes towards disability and why some disabled people become high achievers, but so many others don’t.

When I first read the title of his talk “Can disabled people fly high? Removing barriers to achievement”, I must admit that I thought that it sounded a bit cheesy. But I wanted to find out more. I have heard Tom Shakespeare speak before about disability and I have found him really insightful and knowledgeable about the subject.

I had spoken to the organisers at the London School of Hygiene & Tropical Medicine beforehand about what communication support they could provide. I am really grateful to them and STAGETEXT for being able to provide live speech-to-text reporting of the event at the last minute, as well as providing a BSL interpreter. It meant that the event was fully inclusive to all deaf and hard of hearing people, including non-BSL users like myself.

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Tom spoke about a lot of areas related to the social and medical models of disability, as well as barriers to achievement and what makes a successful disabled “high flyer”. I just want to focus on a couple of things he said which I could really identify with and which really seemed to resonate with me as a deafened person living with a disability myself.

He spoke about disability being diverse and complex. Disabled people are not alike and they differ in many ways. Even people with the same disability or medical condition do not have the same experience of it and often react to it in different ways. We cannot compare “apples with pears” so we shouldn’t generalise and make assumptions about different people living with a similar disability.

He explained that this is why the work capability assessments introduced by the Department of Work and Pensions do not work because they make assessments about disabled peoples’ capability to work based on general assumptions and criteria, which don’t match their individual complex medical and social care needs.

He also talked about the “paradox of disability”, which I can really relate to. When you first get an impairment or disability, especially if it’s unexpected, it’s understandably very difficult for most people to deal with it. Unsurprisingly, you feel really depressed and people often find themselves having panicky, suicidal thoughts. You think that life couldn’t possibly get any worse and go through a whole spectrum of emotions, just as if you are going through a grieving process.

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Then you get used to it and after a while, you find that living with it is not as bad as you thought it would be. Human beings are incredibly resilient and you often adapt pretty well to your new disability and changed circumstances. He said that according to academic studies, most people with a disability report a “high quality of life” against the odds, as long as you are not living in constant pain.

I can definitely relate to this and think that although I went through a very difficult time in my life when I lost my hearing unexpectedly, eventually I learned to adapt to it, although it was very difficult to communicate with other people.

Now I think my life has changed to such an extent that there have been a lot of positive things, which have come out of my experience. I have met some really great people along my journey, have changed a lot as a person and I am now looking forward to the future with renewed positivity and confidence.

Tom also talked about the common factors, which tend to make a disabled person become a ‘high flyer’. Having a good education was a big factor, according to his research. But the other common factor driving the success of disabled high achievers was they had worked incredibly hard to get there. They have struggled so hard against the odds that they are more determined than anyone else to make it.

For example, look at the hugely successful Paralympic athletes. These are clearly exceptional people, who have pushed themselves beyond their limits and exceeded everyone’s expectations of them. They are incredibly positive role models for disabled people. But are their achievements also achievable for the majority of disabled people? Do non-disabled people think all disabled people should be more like these role models?

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Tom said that the majority of disabled people, like non-disabled people, just want to lead ordinary lives. They just want to have a normal job, a family and all the things that non-disabled people want too. ‘

We need to recognise that ‘high flyers’ are exceptional people in any walk of life, whether disabled or non-disabled people. They do not represent the majority of people like us in our society.

He also talked about how disabled people are often told by non-disabled people that they are “brave” or “inspirational” etc., often just for doing normal everyday things that most people take for granted like getting dressed. This can come across as being incredibly patronising to a disabled person, when all they want is to be accepted by people and treated no different to anyone else.

On the other hand, I do think that some disabled people do some incredibly inspiring things and I am truly in awe of them. I don’t think that most non-disabled people mean to sound patronising at all. They just can’t imagine themselves doing the things disabled people are doing, if they were in their shoes. The problem is when they praise disabled people for doing normal things that they themselves take for granted. They should just treat disabled people as they would others.

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What about the barriers to achievement for disabled people? Tom talked about some of the external barriers to achievement, such as society’s attitudes towards disabled people and barriers to employment. According to government figures, 48% of disabled people are in employment, compared to 79% of non-disabled people. But the gap between the employment rate of disabled people versus non-disabled people has remained static, at around 31%, for over a decade.

It is clearly more difficult for a disabled person to become employed than a non-disabled person but the reasons for it are complex. Employers’ attitudes towards disabled people during the recruitment process remain a huge barrier, despite the existence of the Equalities Act. But Tom also said that there were also internal barriers holding disabled people back. This is due to psychosocial factors such as a lack of confidence in themselves or a doubt that they could actually do the job, despite having the necessary qualifications and experience.

Disabled people also don’t push themselves when it comes to seeking a promotion or a better skilled job. They often stay in low skilled, lower grade jobs. This is because they feel comfortable and accepted in the work environment they are in, so they don’t want to risk a new environment where others might not be so accepting of them and their disability.

During the Q&A session at the end I asked Tom what he thought about the impact of the government’s recent cuts to communication support for deaf people on the ‘Access to Work’ scheme. He replied that it was a “no brainer”. By limiting deaf people’s access to the communication support they need to carry out their jobs, it is obvious that they wouldn’t be able to do their jobs in the same way. It would reduce their chances of being successful in their careers and increase unemployment among deaf and disabled people. He said he thought the government’s decision was “blinkered”.

Overall, I agree with Tom that in terms of how and why some disabled people reach their potential and achieve great things and others don’t, we can’t just blame it all on external factors such as society and employers’ attitudes towards them. It’s a complex situation. To put it in his words “We need to strike a balance between recognising the role of oppressive barriers and celebrating individual personal qualities”.

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Why the Human Rights Act matters to all of us

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A couple of weeks ago, on the evening before the Queen’s Speech, I went to a ‘Human Rights Act Bootcamp’ in Westminster. It was a free event, organised by the British Institute of Human Rights (BIHR), in order to raise awareness of what the Human Rights Act is and what it does, as well as informing us about the government’s plans to scrap it and replace it with a British Bill of Rights.

When I saw it advertised I immediately contacted the BIHR and explained that I would like to attend with some of my deaf friends. Very quickly they organised a British Sign Language (BSL) interpreter, live speech-to-text reporting and a hearing loop, making it fully accessible to all deaf and hard of hearing people. The communication support was brilliant, so I would like to thank the BIHR for organising such great access.

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The hall in Westminster was packed that night with people of all ages and backgrounds. There is clearly a lot of interest in this issue at the moment.

The speakers told us about what human rights are and the history of human rights in Europe and the UK since after the Second World War through to the present day with the Human Rights Act. They also told us about how the Human Rights Act works with the European Convention on Human Rights (ECHR) and how it is applied in practice.

I also learned about how the Human Rights Act works in conjunction with many other laws such as the Equalities Act 2010, whose equality and anti-discrimination laws are underpinned by the rights in the Human Rights Act (HRA). In fact, all UK laws should be compatible with the human rights in the HRA Act and the government has to make an assessment on any proposed new Bill about whether it meets the rights outlined in the Human Rights Act.

Modern human rights were first legally defined after World War II in the Universal Declaration of Human Rights of 1948. Eleanor Roosevelt, wife of US President Franklin D.Roosevelt, was instrumental in drafting these basic human rights for everyone living in a democratically elected state. She was known as “The First Lady of the World” in tribute to her human rights achievements.

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After the atrocities committed in the Holocaust in the Second World War by a democratically elected state in Germany, where people were massacred and treated as less than human, these new rules established basic standards below which the state must not go and provided basic protection for all of us from our governments, to avoid another Holocaust like this ever happening again.

This idea of human rights being universal and applicable to all of us has remained fundamental to our human rights legislations and protections since 1948. In 1950 The European Convention on Human Rights (ECHR) was established by the Council of Europe in response to World War II in order to help build the “foundation of peace, democracy, rule of law and respect for human rights” across Europe.

The Conservative Prime Minister Winston Churchill was one of the founding fathers of the ECHR. He saw this as a response to the barbarity of fascism in the Second World War and in order to protect the sinister threat to human freedom posed by the Soviet Union in the post-war period.

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But it wasn’t until 1998 that we were able to access these rights here in the UK when Tony Blair’s Labour government established the Human Rights Act (HRA). This brings the ECHR into our domestic law. There are 16 rights included in it, including the right to life, the right not to be treated in an inhuman or degrading way, the right to freedom of expression and the right to liberty.

Not only should all UK laws be compatible with the HRA or if they are not, Ministers must make a statement on the front of any proposed new Bill declaring that it is incompatible, but public authorities must respect these rights in everything they do. Any person can ask the UK courts and tribunals to look at whether a public authority or individual has breached their human rights.

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In real life, there have been numerous examples of peoples’ human rights being violated by public authorities in this country and they have been brought to account by the affected parties or their families for breach of their human rights. For example, there was the notorious recent case of serious neglect of patients by Mid Staffordshire NHS hospital, where many patients died. Article 3 (the right not to be tortured or treated in an inhuman or degrading way) was invoked and the NHS settled 100 cases out of court.

Other cases have involved the safeguarding and protection of disabled, elderly or vulnerable people with mental health problems and those who have been trafficked where their right to liberty, not to be treated in an inhuman or degrading way, or right to liberty have been breached. The rights protect people from harm, abuse and neglect and offer a vital safety net based on universal minimum standards.

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We then had a talk and discussion about the government’s plans to scrap the HRA, curtail the role of the European Court of Human Rights and replace it with a British Bill of Rights. The BIHR said that they had assessed the proposals using a set of criteria to determine whether the new rights in the Bill would be universal human rights applying to us all, accessible via UK independent courts and the European Court of Human Rights, or whether they would be seeking to restrict certain groups or behaviours and conditions.

They concluded that the proposals do not stack up.

The new Bill of Rights will not introduce any new rights and it is not progressive. It is not universal because it seeks to restrict certain groups, suggesting that human rights are a “gift” that the government can take away or change according to government policy. They would prevent certain groups of people from accessing independent courts to determine whether they have a legal case. It would damage the protection of universal human rights here at home and abroad.

A member of the audience asked the speaker the question that was probably on all of our lips. Why does this government want to scrap the Human Rights Act then? What is the motivation behind it? The answer was that human rights legislation limits government powers, so it is no surprise that the government wants to scrap it, because they find having their powers restricted “irritating”. They are there to protect us from our government.

I think these proposals are very worrying for all of us. My deaf friend asked a question about who would be restricted under the new Bill of Rights and who would get to choose. How would universal rights apply to deaf and disabled people? The response was that there was a question mark over who would be included and excluded but the proposals were moving away from universal human rights.

I asked a question about how scrapping the HRA would affect the rights in the Equalities Act, which came from the HRA. Again there is a question mark over that as it has not been tested. I think that the future for deaf and disabled people could be very uncertain under these new proposals as I don’t think the impact on these groups has been considered.

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The next day I found out that the new government plans to scrap the HRA were not included in the Queen’s Speech as they were pulled at the last minute. Instead, the Queen announced “my government will bring forward proposals for a British Bill of Rights”. Widespread political opposition was believed to be behind this decision.

Let’s hope the government abandons its plans to scrap the Human Rights Act. It is there to protect us all. No government has the right to pick and choose who should be included in human rights legislation and who should be excluded. No-one should be stripped of their rights because of their behaviour, identity, race, gender, sexuality or disability.

We can all make our voices heard by becoming a friend of the BIHR, signing their Human Rights Charter, getting in on the Twitter conversation and spreading the word with our friends, family and colleagues. We can also contact our local MPs about it, who are meant to represent the views of all of us.

No doubt the road ahead of us to keep our basic human rights will be long and difficult, but in the words of the BIHR “Once we’ve lost the Human Rights Act, we have lost the debate on why human rights matter”.

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Carpe Diem: my new communication journey

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It’s been a while since I last blogged. It’s been a difficult last few weeks, to be honest, and I didn’t feel able to write about it, but I’ve now decided that I want to blog again and tell you what’s been happening to me since then.

A couple of weeks ago my hearing dropped suddenly, virtually overnight. I woke up and everything sounded muffled and distant. I couldn’t hear my wife’s voice and I could hardly hear my own voice either. I knew that things weren’t right and my hearing was dropping dramatically. It felt just like it did before when I first lost a lot of my hearing three years ago.

I managed to get an urgent appointment to have my hearing checked out at the ENT hospital on Gray’s Inn Road at King’s Cross the next day. To cut a long story short, I ended up on high dosages of steroids in the hope that they would restore some of my hearing. However, a few more hospital trips later and I am now left with hardly any hearing at all.

This has been really difficult to come to terms with, even though it has not been as much of a shock as it was three years ago. I have a much more developed support network now than I did then. But even still, it feels just as hard. I now feel excluded from so many things that I used to take for granted when I was hearing. I am finding it hard to communicate with other people when I can’t hear what they are saying and I can’t join in their conversations. I now can’t use the phone at all, and everything just sounds really muffled and distant with my hearing aid.

I feel like I have now entered a new stage in my deaf journey, which is a very lonely place to be. I know that anyone with a hearing loss will identify with this sense of isolation, particularly as deafness is such an unseen disability.

Yet I am so lucky that I have the tremendous support from my wife, family and close friends, who are really helping me through this. I use a mixture of communication tactics with them, like lip-reading, looking for visual clues, some basic sign language and fingerspelling as well as talking, and asking them to write down what they are saying as a last resort. It’s all incredibly tiring and frustrating, particularly as I now have to concentrate really hard to rely on lip-reading much more, but we manage to just about get by.

These communication barriers make me even more aware of just how important good access to everyday things is to deaf people. I come across new obstacles and barriers everyday, which I previously was completely unaware of when I was hearing. For instance, the other day I found out that my local Blockbusters DVD shop is closing down soon. I actually feel really sad about this because I now won’t be able to rent DVDs anymore, because DVDs rented online from companies such as Love Film don’t have subtitles, so I can’t watch them anymore unless they decide to introduce subtitling.

Even when I was at the ENT hospital in Gray’s Inn Road I had major communication barriers.  While waiting in the outpatients’ waiting room, the VDU screen wasn’t working, so they were calling patients’ names out for their appointments. I would have had real problems with this if my sister hadn’t been there with me, as I would not have heard them calling my name out when it was my turn and I would have missed my appointment. I have learned from experience that whenever I have a hospital appointment, I have to take my wife or a family member with me to help me as few hospital staff members have any deaf awareness. This makes me feel disempowered and too dependent on other people, which I shouldn’t be at my age.

I now can’t attend most meetings or events anymore unless they are made accessible to me via speech-to-text reporting (STTR), which is usually not available as there is no funding for it. I have been told that a “reasonable adjustment” would be made in meetings via the provision of a working hearing loop, but this is not “reasonable” for me at all as a hearing loop is now useless to me, so I wouldn’t be able to follow the meetings at all.

But thankfully it’s not all bad news and lack of inclusion and equality for me. Carol, a wonderful lady who I volunteer for at Action on Hearing Loss’s ‘Hear to Meet’ service in Barking and Dagenham, has really supported and encouraged me, so I’d really like to thank her for that. She has asked someone to help support me in meetings with lip-reading, signing and communication tactics. It is a learning curve but it is working for me. It is total communication support, which is a big help to me and I’m also improving my sign language. It’s great to have support like this from people who genuinely want to help me.

Now that my hearing loss has become really profound, it has got me interested in improving my sign language. I studied basic BSL to Level 1, but I now find that I’m increasingly using it more, so that I don’t have to totally rely on struggling to lip-read people. I’m learning with a brilliant BSL teacher called Joe Collins, who has helped improve my confidence through signing and he is an amazingly patient teacher. I feel like it is such an achievement to actually have a conversation with him in BSL.

I am also increasingly using some basic sign language with my wife Joanna at home, and she is benefiting too by learning from me. I feel that using some basic BSL enhances my ability to manage my wellbeing as my hearing has deteriorated. I think that I am trying to compensate for my hearing loss by improving my visual language. I’ve now signed up for a BSL Level 2 course, which I am starting in January. I only wish that these BSL courses were cheaper and more affordable for people like me.

It has also really made me appreciate the importance of captioning and remote speech to text reporting (STTR), as they are accessible and universal to people with all levels of hearing loss, unlike hearing loops, which are fine for hard of hearing people, but not if you are severely or profoundly deaf.

Last week, for instance, I went with my wife to the British Library to see a talk by Lucy Inglis, an historian, journalist and writer. Her talk was called ‘Georgian Londoners: The Making of a Modern City’. It had live speech-to-text reporting by STAGETEXT, and it was related to the new exhibition currently on at the British Library, called ‘Georgians Revealed’. This was to celebrate the 300th anniversary of the accession of George I to the throne.

I really enjoyed her talk in the auditorium and it was great not to have to struggle to lip-read her from afar. She gave some fascinating insights into a wide variety of aspects of Georgian London life. It was great that I could follow what she was saying from the live speech-to-text reporting, although she spoke really quickly and covered so many different topics.

I enjoyed her talk so much as I learned so much and I felt back to my old self again. Last week we followed it up by going to the actual exhibition at the British Library itself. That too was fascinating and I’d recommend anyone to go and see it. I really felt like I’d learned something and could relate it to how we live our lives today. The British Library, together with STAGETEXT, does these accessible talks so well and the exhibitions are great too.

I now want to focus on enjoying doing all the things I love doing, such as going to captioned theatre performances and accessible talks with my wife and friends, volunteering in my local community, walking my dog Jake and trying to help increase deaf awareness.

I’m just trying to enjoy life as much as possible, taking each day as it comes and trying to focus on the positives, rather than the negatives. I’m also trying not to worry about the future, as I don’t know what it will bring.  My new motto to live my life is ‘Carpe Diem’ and I intend to enjoy every moment as much as I can. I’ve recently had a new tattoo done with those words tattooed on my arm, although my wife wasn’t quite as thrilled about it when she saw it as I was!

Surgeon Everard Home: hero or villain? – captioning cuts through barriers

I was really excited to go to a talk recently at the Hunterian Museum in London with my step-brother Ian, who is an ENT surgeon at St Thomas’s Hospital. This talk was captioned live by STAGETEXT and when I asked Ian if he would like to come with me, he said he would be delighted. When I told him that the event would be captioned, he said he was intrigued, as he had never seen a live talk with captioning before and he wanted to find out how it was done and whether it would enhance the experience for him or be distracting.

From Ian’s perspective, he told me that it was wonderful that we could both go to this together, make a day of it and enjoy the talk. He also told me that he was proud to show me the Royal College of Surgeons, of which he is a Fellow. For me, I thought it was brilliant to go to this talk and learn from it, but the most important thing was that we could both enjoy it on equal terms as it would be fully accessible to me too.

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 The event was held in a beautiful, historic, oak-panelled reading room. I could immediately sense the history and learning associated with this imposing building as we stepped inside it. The talk was given by Dr Simon Chaplin, the Head of the Wellcome Library. He was formerly the Director of Museums and Special Collections at the Royal College of Surgeons, where he managed the Hunterian Museum.

Dr Chaplin explained the history of the founding of the Royal College of Surgeons, giving a fascinating insight into why we still address surgeons as ‘Mister’ and not ‘Doctor’. This is because originally in medieval times, surgeons were associated with barbers because of the knives they used and in 1540 Henry VIII formalised their union by creating the Company of Barber Surgeons. The barbers did not need to study for a university degree, unlike doctors, and it was not until 1745 that the surgeons broke away from the barbers and in 1800 the Company was granted a Royal Charter to become the Royal College of Surgeons.

He explained the story of the original founder of the Hunterian Museum, Sir John Hunter, who lived between 1728-1793. Hunter was a very active member of the Company of Surgeons. After first pursuing a career as an army surgeon, he returned to London and was appointed a surgeon at St George’s Hospital. He later became a surgeon to King George III. He was fascinated with the study of life in all its forms, but particularly through the study of anatomy. This was in an age of discovery where modern medicine was still in its infancy and people commonly died of illness such as smallpox, venereal diseases and tuberculosis.

Hunter went around the world collecting thousands of specimens of insects, animals and human cadavers, in order to dissect them, learn from them and advance surgical techniques and medicine. He was also quite a colourful and controversial character, because he even experimented on himself by inoculating himself with syphilis and gonorrhoea to try and establish a link between them, and he also obtained human cadavers from suspect sources in the criminal underworld and by bribing funeral officials to give him the corpses. Despite this, he is well-respected and remembered as making a huge contribution to medical science by, amongst other things, studying the causes of inflammation and unravelling one of the major anatomical mysteries of the time – the role of the lymphatic system.

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Hunter’s apprentice was called Everard Home, and Hunter was married to Home’s sister Anne, a well-known poet and socialite. Dr Chaplin explained that Hunter had died bankrupt and an alcoholic, so when he died his entire collection, which now consisted of over 14,000 preparations of over 500 species of plants and animals in a teaching museum, was going to be broken up and sold off. Everard Home was a hero in one sense because he saved this invaluable collection, which is still in the Hunterian Museum. But on the other hand, he has also been described as a villain because he plagiarised many of Hunter’s scientific findings and published them as his own. In order to cover up the evidence, he burned many of Hunter’s original handwritten notes containing his theories and findings, which would have been considered highly important evidence of his work.

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As the speaker explained this, I found the story increasingly fascinating and enlightening. I realised what an age of discovery this period was, but the dark, macabre undertones of it all made it even more gripping. The captioning was also amazing. Considering that the terminology used was very technical and the speech-to-text was live, it was perfect and the operator did a fantastic job. The captioning appeared at the top of the screen, and it also complemented the slides the speaker was showing. In fact, for me, it really enhanced the whole experience.

Ian told me that at the beginning of the talk, he was curious to read the speech-to-text captioning, but after about five minutes, he hardly noticed them. He also told me that they definitely did not distract. He felt that the captioning enhanced the story and he was amazed at how instant they were. In fact, he was so impressed by the technology and how well it worked, that the first person he spoke to immediately afterwards was the speech-to-text operator and he actually took photos of the speech-to-text keyboard.

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Ian had to get back to the hospital straight after the talk, but after being at the talk, I had to look at the museum. I was taken aback by the sheer scale and variety of the collection, which included the skeleton of the 7 foot 7 inch Irish giant Charles Byrne, whose body Hunter had acquired in 1783 against Byrne’s clear deathbed wishes by bribing a member of the funeral party, and I also saw Winston Churchill’s dentures there. Their collection of historical surgical instruments and amputation knives and saws looked absolutely primitive and without any anaesthetic at the time, the excruciating pain for the patient would have been unimaginable.

Ian and I agreed that the experience for both of us was incredible and fascinating. We both learned a lot about the history of the Royal College of Surgeons and the Hunterian Museum. But it is probably not one for the squeamish!

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