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When I did my history PhD at Dundee University (“Reading habits in Scotland circa 1750-1820”) I was plugging a big gap in the research. All PhD research should make a contribution, but it’s rare for a subject to be quite so little studied before as this one. Scottish reading habits and book history more generally had been little researched since Paul Kaufman in the 1960s. Some PhDs had been completed, but usually by librarians, without their own graduate students to inspire. And so, although Scotland has a mass of useful sources (library borrowing records, evidence of book ownership etc.), its reading and book history was largely little researched when I started my PhD in 2003.

Of course the downside of having a big gap is that there’s always a chance someone else will come along and fill it. During my PhD there was a panic moment, when I learned of another PhD student, Mark Towsey at neighbouring St Andrews, looking at many of the same sources, with a very similar PhD topic. We met up, and established our respective approaches. We still had overlaps, but not enough to jeopardise getting our PhDs. And we both completed successfully.

That was some years ago, but more recently reading history has become more popular among Scottish researchers, almost fashionable to an extent. And in the last few years I’ve watched with interest new PhD students starting to work on Scottish reading habits, for example Maxine Branagh-Miscampbell looking at childhood reading in 18th century Scotland, and Jill Dye studying Innerpeffray Library and its borrowers. It’s a slightly strange feeling seeing the field come alive like this, but in a rather wonderful way. And it’s always exciting to see new researchers approach things differently, in terms of their theoretical framework and methodologies, and in terms of the core research questions that they explore.

I’m very much looking forward to seeing the results of these and other upcoming Scottish PhD projects in the next few years. It’s exciting to see these developments, if still rather strange at the same time!

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Floundering

Very insightful piece into what archival research is like for academic historians. Often boring, but sometimes you turn up a real gem – usually quite unexpected.

Will Pooley

I sometimes wonder what outsiders think archival research is like.

The message blasting from mass culture is not reassuring. From the ‘archaeologist’ Indiana Jones to Dan Brown’s ‘symbologist’ Robert Langdon, audiences are told that archive work is exciting, and dangerous, that it’s ok to lie and steal to get the information, and that men always do it with female sidekicks. If you want to see perhaps the most shockingly outdated embodiment of this, I dare you to look for the recent McDonald’s advert which features a caricatured elderly male professor along with his young female researcher having an eureka moment. Do not watch it unless you are prepared to be angry.


But – and here’s the kicker – archival research is fundamentally quite boring most of the time. In fact, that boredom is part of what makes it exciting. I wonder how many other historians were keen on fishing in their…

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I’ve been spending much time in the last week in the 17th century, transcribing a lengthy poem about a corrupt court judge at Melrose in the 1680s. Doing that reminded me of the talk I gave in September 2013, at the conference of the Economic and Social History Society of Scotland, held in Inverness. I thought it would be nice if I put the PowerPoint slides from that online, so have done that – link here. It was a 20-minute talk, as is usual for academic conferences, so I was limited in how much I could say. But I covered a lot in the time allowed.

My talk was titled “Glimpses into a time of turmoil: examining the regality court records of Melrose, Roxburghshire, 1657-1706”, and was based on the dissertation for my taught MPhil degree at Dundee. I studied the voluminous local court records for Melrose regality, and had a fantastic time. I have ancestral connections in Melrose, going back to this period, and lived there myself for part of my childhood. And as a disabled student it was a perfect project: the records are largely transcribed already, so I could work on them at home, as able to.

In the process of the research I built up a gigantic database of court cases, pursuers and defenders. The index of people’s names recorded is online already, as part of my Melrose one-place study. There were probably only about 2500 people living within the court’s jurisdiction at this time, making the vast numbers of people recorded as using the court quite astonishing.

The slides don’t record everything I said in the Inverness talk though. For example there’s a detailed slide of the many debts murder accused John Halliwall weaver in Gattonside left in 1673 after escaping prison before his trial. I explained more about Halliwall’s story verbally on the day, not on the slides. He escaped on horseback, after a court officer let him out of jail to help him sell ale!

I’ve also spoken about the 17th century court records to the local historical society in Melrose, many years ago, in a well attended talk in the town.

There are so many other stories I want to share about the Melrose community from these records. For example a g… uncle of mine was judge of the court from 1657 to 1665. Well he was, until he was charged with “striking and hurteing of Robert Mott, servitor to John Bowar, portioner of Eildoune”. His own court fined him £10, and he lost his job. But that, and more, is for another day!

Two weeks ago I was in Paris, partly for holiday, partly to attend the annual SHARP book history conference. SHARP is the Society for the History of Authorship, Reading and Publishing. Its conferences are held each year, usually alternating between North America and Europe. I’ve been to SHARP conferences four times now, since 2005, and always find it a rewarding experience. I’ve written up my 2016 experiences below, mainly to have a record for myself for the future. In a nutshell I had a great time, and was inspired as usual, but had some wheelchair accessibility issues, and other concerns about the conference venue. If you want to read on feel free, but note it is long!

This year’s conference, per the usual format, was held over three main days, with over 100 panels of usually three talks, up to eleven panels simultaneously at any given time. In addition there was a day of postgraduate talks and activities. The conference was held at the Bibliotheque nationale de France and the university site BULAC. This conference would turn out to have the biggest attendance yet of any SHARP conference so far. In addition the conference was bilingual, including live translation in place for the audience at key talks.

I could only go to the conference on one day. I have a neurological illness, similar in day to day symptoms to multiple sclerosis, and am limited in how long I can attend any academic event. I am also very weak after any event, and need to rest, preventing any chance of attending on successive days. I usually bring my wheelchair if possible, to help me last longer. Sadly wheelchair accessibility at sites varies, but usually we manage pretty well. As usual, I contacted the conference organisers before registering. This was partly to check wheelchair accessibility, but also to ask if my husband could be admitted free as my helper. I can’t wheel myself around, and having him there to help me through doors etc. and manage meals etc. is enormously helpful. Usually conference organisers are happy to do this, and that would be the case this time too. We intended to attend the Paris conference on the Wednesday, including the digital showcase, but had to wait for the final programme, released just before the event, to be sure. A drawback for me was the conference being split across two sites, with a long walk/push between them – fine for fit and healthy people, not so great for me in a wheelchair. So we were keen to stick to the one venue. Fortunately I found enough talks I wanted to go to on one day at the main BnF site. Ideally we would have been there for the opening panel at 9am, indeed earlier to allow time to register. But with the logistics of getting a wheelchair across Paris by taxi we aimed instead to get there for 9.45, when we would meet a BnF staff member to guide us in with wheelchair, negotiating the lift etc.

The conference started on the Monday, with postgraduate sessions, before starting properly on the Tuesday. I followed the tweets from conference attendees over the opening days – many more tweets than I’d ever seen for any previous SHARP conference. From the tweets it was clear that many people were struggling with heat, in unusually warm weather for Paris (up to 36C). This made me extra relieved that I was only aiming to attend on the one day, in a modest way.

Wednesday arrived. It was another extremely hot day, but luckily we had a scary but trouble free taxi ride across the city to the BnF. We met BnF staff member Isabelle who took us into the building, including via the lift. I was quite surprised at how much security there was in the BnF building, but in the circumstances it’s sensible. We registered us both with no problems – because my husband was recorded as a full attendee (albeit paying no conference attendance fee) this meant he got an identity badge too, which was good to have. At registration we ran into a St Andrews book historian we know, which was nice, then wheeled through to the auditorium foyer where the publishers stands were, and also the venue for many coffee breaks. Here we had our first hiccup with the building: an awful lot of doors to go through, which had to be opened wide. Again I was grateful my husband was with me, not coping on my own, though other conference goers rushed forward to help too, which was extremely kind of them.

We found the Brill publishers stand and managed to buy the book I wanted – a recently published St Andrews book conference proceedings, bought at SHARP at quite a discount. It was nice to see another familiar face with the Brill rep there, who we’ve seen before multiple times at SHARP and St Andrews. Then time for a quick drink, before heading off for my first panel at 11am.

Here we ran into more problems. The BnF is a very long building, and it was a very long walk to the salle Jules Verne where our panel was. I couldn’t have walked that distance, even when I’m on my feet and coping well. So thank goodness for the wheelchair. Though it was not always easy to wheel on heavily carpeted floors. Of course heavily carpeted floors are good for sound proofing, in a library environment. There were lots of “Silence!” signs around as we travelled along, past many quiet reading rooms.

The Jules Verne room itself was problematic. I had to get out of my wheelchair to get through the door. Even more troublesome was noise coming in from people speaking outside in nearby corridors, seemingly on three sides of the room. This was very distracting for audience members, and very distracting for the speakers, who often tried to raise their voices to be heard over audible conversations we could hear and follow from outside. This was not a great setting for an academic talk. Also seating in the room was poor for the audience trying to see the slides at the front. Much of the audience couldn’t see the PowerPoint pictures being shown by the speakers, with fellow audience heads in the way. Again not a great arrangement of room for what was needed.

Having said that, the talks were fascinating. This panel was about 18th century libraries, so bang on topic for me who completed a PhD on Scottish reading habits in the late 18th and early 19th centuries. I particularly enjoyed Jason McElligott’s talk about book thefts in 18th century Dublin. Partly this was for a personal reason: I have Dublin ancestry, and my ancestors would have lived in the city then. I doubt they ever set foot in Marsh’s Library, though I wouldn’t put it past them handling stolen books! But I also enjoyed it because it gave a different perspective on reading and book collecting tastes at the time. I actually commented on this in the Q&A section after the talks, suggesting to Jason that he could use the detailed lists of books stolen to reassess Irish reading tastes at the time. It’s quite likely that it would give a different picture from conventionally studied records like library catalogues and bookseller adverts.

After this it was lunchtime. So first was a long wheel back to the grand auditorium foyer where lunch was served. Here was a particular delight: individual take away cardboard lunch boxes, with handles, full of sandwiches, salad or pasta, fruit and a drink. It was a great way of giving out the food tidily, but also meant attendees could carry their lunches easily to wherever they wanted to eat in the building.

The Digital Showcase of book history computing projects is usually held on the middle day of the conference, and I was keen to get it. One project on display I was interested in had no-one there to talk to about it, and the information board was all in French, which stumped us somewhat, though we tried our best to read it, my husband even resorting to a simultaneous translation app on his iPad, photographing sections of the information board, and then letting the app try to spot the words and instantly translate. Quite magic, but a bit limited. However I was relieved to get to talk to Jan from St Andrews – another familiar face – about Book History Online. I’d recently noticed some gaps in its coverage, and wanted to know more about how the resource – an online bibliography of book and library history – is compiled. I came away much wiser. I’m sure it will be a useful resource for me to use in future. Fortunately although it is subscription only I can access it through my honorary research fellowship at Dundee University.

After this we made our way to the next room. And here problems were manifold. The next panel we were going to, about shipboard publications, was in the room designed PLK1, in one of the outside towers, outside the main BnF building. Fortunately we had studied the maps to know how to get there. But even once there we couldn’t get in the door. And the building’s security guards didn’t have a clue what was going on, or why we were wanting to get in that door. Eventually they phoned someone inside the building to come and open it from inside, but it was chaotic. And once inside we had to get to the first floor, with no lift. And my wheelchair. I had told the conference organisers in advance which specific panels I wanted to go to, but I believe there was a breakdown of communication at their end, and they didn’t move this panel to a more accessible room. Fortunately I’m not wheelchair bound, though very weak at attending a long day of academic conference. Most helpfully my husband was willing to carry the wheelchair up and down stairs, while I struggled with my sticks. So I was able to get to the panel I dearly wanted to attend. But this should never have happened. Once inside the room we were joined shortly by two of the speakers, who weren’t sure if they were in the right place, and wondered if anyone else would find the room! Fortunately more people did, and there was a good audience by the time the panel started. Though there was no trustworthy looking wifi in this venue for audience members to use, including no access to the main BnF wifi network. I ended up connecting to something that looked somewhat dodgy, but would hopefully let me live tweet. That wasn’t a great situation to be in.

Thankfully the panel was really interesting, and worth the struggle up the stairs with a wheelchair! The three speakers all spoke about different aspects of shipboard writing. I was particularly agog at the story of the New Zealand troop ship magazines being saved thanks to a Dunedin librarian with much foresight requesting in the 1920s that the magazines be sent into the library, for posterity’s sake. I also found the stories of emigrant ship magazines moving, giving a sense of community to people setting out on new lives. For example it was touching that these magazines, compiled by the emigrants themselves, referred to the ships as ‘home’. All the talks were well presented, and on time, and followed up with a lovely Q&A, with good cross-panel discussion from the panellists, as well as participation from the audience.

I had originally intended to attend a third panel of the day, on archives and book history. But what with the extremely warm temperature combined with our struggle up and down two flights of stairs I decided to leave early. So we called a taxi, and were picked up at about 4pm outside the BnF.

All in all I had a rewarding day. I’m not totally sure about the suitability of the BnF as a conference venue. Not just for my problems with wheelchair accessibility, but also due to relatively poor signage, widely spread out lecture rooms, and quite a lot of noise coming through into at least one of them. That room also had problems for people trying to view PowerPoint slides on screen. And we had wifi problems in the other room too. But we were made very welcome, and the lunch was superb. And, as usual, I found attending even the one day of SHARP incredibly stimulating intellectually. Even from just the two panels attended I have lots of fresh ideas to apply to my own research and writings, and feel inspired.

I’m not sure when I will be back at SHARP’s annual conference again. Probably when it is back in Europe. Health permitting. But I look forward to it. Meanwhile I have great memories of my time in Paris, including a day at SHARP 2016.

I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.

I’m just back from attending the morning sessions of today’s Distinguished Lectures in Computer Science at St Andrews given by Maria Klawe, fifth president of Harvey Mudd College. The lectures run all day, but due to my MS-like illness I could only attend the morning sessions, not the whole day. However I greatly enjoyed my time there, and wanted to note my thoughts while I can still remember them.

The venue was the Byre Theatre, St Andrews’ town theatre, in the main auditorium, providing ample seating for current St Andrews computer science staff, students and alumni who had been invited to attend. My husband and I were both there as alumni, from the 1990s. I had to use my wheelchair today, and thank Aaron Quigley and others for arranging a suitably accessible venue. I had a very good view from the back row. Indeed one member of staff joked that I had the best view in the house!

The theme of today’s three lectures was “CS for all”, exploring issues relating to widening computer science education and participation at school level, undergraduate level in universities, and in active research, including disabled people. We attended the first two lectures, which each ran for an hour.

The school-level one, “Computing for all in K-12 education” was particularly interesting, looking at initiatives – often outside academia itself – to widen computer science and particularly programming education for school-age children in America. I was particularly struck by the statistics showing how few computer science teachers there are in US schools, and especially in New York, with just 23 out of nearly 10,000 teachers. No wonder the subject is under-taught in schools. Anyway Maria discussed lots of positive initiatives for change underway, which were encouraging. And there was an active Q&A session afterwards. I was particularly heartened that almost all the people asking questions were women, very encouraging for gender equality. I wasn’t planning on asking a question, but something Maria said triggered me off, and I asked if there was evidence that these various school-level initiatives are leading to increased interest in computer science at university and similar levels.

The second lecture, on university-level education, also appealed to me. When I studied computer science as an undergraduate between 1990 and 1994 I was a tiny minority as a female student. So any steps to widen things are welcome. This was a good talk too, although I would personally have liked more detailed coverage of the various initiatives to widen accessibility. I was left often wanting to know more, as was my husband. I also wondered just how well some of the initiatives might translate to a UK setting. It seems to me, and I may have this wrong, that university level education in the USA is far more flexible than in the UK, with more flexibility in terms of which subjects you specialise in. Whereas in the UK it is normal to apply to a specific honours programme from school. This is particularly the case in England, with three year honours degrees, but even in Scotland, with its extra year for flexibility. And it isn’t always possible to switch later. My future husband and I – both undergraduates at St Andrews between 1990 and 1994 – wanted at the end of our first year to switch to joint honours computer science and astronomy, both quite unaware that the other was trying to do this at the same time. But the university authorities had just scrapped that honours degree combination, so we were told no, and I opted for just computer science, and my husband physics and astronomy. Though if we’d applied straight to do this combination from school we could have done it. Whereas in the USA I get the feeling that things are more modular and more flexible, and e.g. there is more room for people to move to computer science from other subjects later during their degree programmes.

This talk ran for quite a long time, leaving little time for questions, but there were interesting ones. I was particularly amused by the discussion of funded versus self-funded PhDs. After leaving computer science I switched to history, studied to completed PhD level. There is virtually no public PhD funding available for humanities students, meaning there is a much stronger tradition of e.g. history students self-funding, usually part-time. This is rarely in my experience done for employment purposes and to lead to increased salaries, but more for personal development and an intellectual challenge. But it does lead to a very different research environment from hard sciences like computer science, where the balance is more towards full-time funded PhDs going on to academia or industry.

Anyway I’m really glad that I went, sorry I’m missing the last talk. Many thanks to Maria and the organisers for such an interesting event. And for opening it to alumni like me and my husband.

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Today is Rare Disease Day, where people living with rare diseases are promoting their experiences through social media and other forms of networking. Though this is a bit of a break from my usual academic blogging, I hope that readers will understand why I’m writing this.

I live with a 1 in a million diagnosis, falling ill when I was just 22. The name is cerebral or central nervous system vasculitis, which when it springs from nowhere – as in my case – rather than as a result of another disease has an incidence of about 1 case per million people per year. Yes I’m special! Mmmm. This disease has impacted on my abilities to be an academic, forcing me to leave one full-time science PhD and later study part-time as a historian, to PhD level (completed – yay!). And it means I can’t work in academia in a paid capacity, due to my MS-like symptoms and living with what is a progressive disease. But I try to be as productive as I can. To read more about my medical story see here, and to read more about how I’ve coped as an academic see here.

But in this post I wanted to reflect more on some issues that living with a rare disease causes, rather than something more commonly found like cancer or arthritis. These range from diagnosis, through ongoing treatment and medical research, support from the social care system, and varied degrees of understanding from family, friends and colleagues.

Firstly if you have a rare disease, getting the correct diagnosis – which can be life-saving – can be very difficult. General practitioners tend to assume a more common disease form is taking place. Even at hospital level this idea can persist. I was initially misdiagnosed with ME, which at the time (and to be honest still is the case) had no viable treatment. But my symptoms changed over the following years, looking more and more like multiple sclerosis. And progressing. It was very hard to get the GPs to take me seriously. It was only after 12 hours of unstoppable vomiting for no reason – one of my early symptoms – and a GP having to give me a midnight injection in the derriere that he referred me to hospital, extremely concerned. Even at hospital the consultant assumed my ME diagnosis was right. I had to argue with them – hard given how ill I was – why I thought it was wrong, and why more tests were needed. I was right. I had a very aggressive life-threatening disease. One shocked consultant, me just relieved that a proper diagnosis had been made, and treatment could finally start.

But then there are problems too. if you have a very rare disease it’s unlikely to get much medical research, so new treatments may not be discovered, or may not be assessed to be cost worthy and suitable for your disease. With more common forms of vasculitis – the disease I have – there is more medical research happening, particularly into those forms of the disease that are ANCA-associated. For these forms of vasculitis new treatments are developed, and approved on the NHS. But for much rarer forms like my primary cerebral vasculitis the number of patient cases around the world – and in any country – is so small that it isn’t possible to do traditional medical research trials. So my form remains largely unresearched, and there aren’t the trials and resulting scientific evidence to lead to approval for treatment with new drugs discovered for other forms of vasculitis. For example Rituximab is an extremely expensive life-saving treatment approved for ANCA forms of vasculitis. There is not scientific evidence for Rituximab in the rarer non-ANCA forms like mine, and as a result it is rarely approved by health authorities in the UK.

With such a rare diagnosis support at general practitioner level and nurse level can be a problem. They’ve probably rarely encountered any vasculitis cases, which is rare enough, let alone my specific form. I have an excellent GP who has treated me since 2004 (I fell ill in 1994), but it can be difficult to get appointments with him. Because of him being away from the surgery on one day combined with the health centre appointment system stopping named appointments on certain days it would be vastly easier for me to get an appointment with any doctor, particularly a locum, but unless they’re “my” doctor they wouldn’t know what to do with my case. I’m on an incredible cocktail of drugs as well as having something rare and exotic wrong with me, and continuity of care is important. Even with nurses who administer my monthly (and for many years weekly) blood tests things have been a little difficult, with nurses not understanding why certain tests are needed, and not initially taking my word for it. But we got there in the end. Incredibly even at hospital level there are problems if you have to see another consultant unfamiliar with a rare disease and case. My consultant since 1996 recently retired, and I was very concerned that I would be put in a general clinic where I would have to tell my medical story every time, and even after that the medic on the day wouldn’t be confident what to do. Fortunately I was passed to another consultant who was my “backup” for years. He’s young, and hopefully not retiring or moving anytime soon!

It might be expected that a medical professional should know about a rare disease, though they rarely do. But it can be harder for non-medics. This causes problems for example for people applying for benefits through the benefits system. But even with family, friends and colleagues there can be misunderstandings. My disease is largely invisible. I only use a wheelchair rarely, though I have at least one stick (and sometimes two) permanently. People often only see me for the short periods I can go outside to an event, and don’t realise how much it takes out of me, and how much I need to rest before and after events. Also because I manage to do things people can underestimate how badly I am affected. I’m particularly minded of the notorious experience of dealing with a neurologist, who because I had completed a PhD couldn’t grasp that I could have cognitive problems. I completed that PhD towards the end in 1 hour chunks, spread throughout the week, up to 5 hours total time a week if I could manage it. After each hour I would be very wobbly, couldn’t control my limbs, just from the brain concentration I’d been doing, and it might be a couple of days before I could do anything PhD-y again. Yet he thought I was fine, on the basis of a short consultation, and because I had that PhD.

Fortunately both my history PhD supervisors were hugely supportive. They quickly grasped that they didn’t need to understand the medical side of things, they just had to know how I was affected, and let me take control of my studies. I’ve also had wonderful support from the department since completing the PhD, giving me an ongoing honorary research fellowship. And conference organisers are typically very helpful if I have to use my wheelchair, letting my husband accompany me at no registration cost, to assist me.

I don’t know the numbers, but there are probably a lot more people living with rare diseases out there than people think. I’d like to think that the situation will improve for them. But it’s going to take a bit of a sea-change in attitudes, both among the general public, and among the medical profession.