Feeds:
Posts
Comments

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.

IMG_1350

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.

As a family historian with some English connections I was interested in the 1939 English and Welsh Register which went online recently at FindMyPast. But having seen the 1939 Register entries for my Scottish ancestors I didn’t expect to find anything terribly new or exciting. So I wasn’t even sure if I’d check it out promptly. But sure enough I did, being still up as the site went live shortly after midnight on Monday 2nd November 2015.

Sadly the site was very flaky then, with lots of pages failing to load. I was getting an awful lot of error messages, at various points e.g. initial search results, trying to preview an entry, trying to buy credits/unlock an entry, trying to view an image. Usually reloading one or more times sorted it out though. And I don’t seem to have inadvertently spent my credits twice. Fortunately site responsiveness improved over the coming days, and it’s much more stable now, but that wasn’t a good way to launch a website, especially when people were paying pay-as-you-go to access the information.

The positive thing is that after battling through the page loading problems I was very surprised by how much useful information I got in this. Examples include:

  • Finding my great-grandfather in Leeds, getting valuable info on him. He was estranged from my granddad so we didn’t really know anything about him circa 1939, even if he was still alive. Now we have an occupation, address, the fact his second wife was still alive, and this has helped me to hopefully track down his death a few years later.
  • Learning that my husband’s great-grandparents on a farm had 2 land girls staying with them.
  • Discovering that my husband’s Norfolk grandfather was in the local fire brigade in 1939, just like my granddad in southern Scotland.
  • Finding my other Yorkshire great-grandfather with what looks like wife #3, and then using that info to finally trace their marriage record in FreeBMD.

I was also impressed by how full the pages are. Even with lots of entries closed (like my Dad’s, aunt’s, and my husband’s uncle – all still living, in their 80s) you get names of lots of neighbours at the time. Which is really nice. I emailed the relevant pages to my octogenarian relatives, so they can see some neighbour names that might bring back memories for them.

On the downside I still can’t find my husband’s paternal grandparents in the 1939 Register. Goodness only knows quite how they’ve been recorded and/or transcribed! Maybe I’ll find them in future though.

But yes, pleased with what I found. Far more useful than I thought it would be – I didn’t honestly expect it to tell me anything new or terribly interesting. I found the information I got worth the price I paid to unlock the households, but that’s mainly because of unexpected information I found. Getting birth dates for relatives is great, but I’m not sure that would have been enough for me. It’s the extra detail, like war service information and some unexpected genealogical clues, that really helped.

Having said that, I’m not sure that the 1939 Register is being that well promoted by FindMyPast. In particular they aren’t making clear to genealogists that people born after 1915 who are not known by the Register authorities to have died cannot be searched for in the site. There are an *awful* lot of very experienced genealogists out there who have tried to find, for example, parents or other fairly recent relatives in the new database. These people would have been in the 1939 Register, but are too young to be released this time. But the information in the FindMyPast help pages isn’t clear about this at all, not explaining in simple terms that these people cannot be searched for online at the moment.

I’m also not convinced that FindMyPast appreciate just how useful the information in the right pages can be for genealogists. I’ve found references to local war service – e.g. land girls, fire brigade, and air wardens – on every single page I looked at. In some rural areas there were numerous entries in that column. Two of my husband’s ancestral households had useful information there. As a family historian that’s just the type of detail that adds colour to the family story. But sometimes it’s cropped too severely, and cannot be read properly as a result. I think this information is one of the strengths of this register, isn’t as rare as FindMyPast think, and should be better supported via the website.

So some concerns still. I’m also not quite sure how useful this site will be to me as a one-name studier. I’m researching the surname Cavers, and it’s not clear yet how useful it would be to me to extract references to that name (77 or so). Even using the free preview information I’m not sure it would tell me that much new, with so many redacted child/recent entries. And it’s not cost-effective for me with the current pricing structure to unlock all those households. So yes, not sure. I think the site can be great for genealogy, but more personal family history than one-name studies. One-place studies may be different, though my two are in Scotland, so I can’t use this site for those. Time will tell!

EDIT: As a late postscript to the post, after I posted this earlier today the death certificate of my Leeds great-granddad arrived in the post. It reveals that he had more children, with wife #2, the wife who refused to take care of the older children of his first marriage, which meant those children had to go into a home, and broke off all contact with their father. So my Dad now has a new aunt and uncle to add details of to the family tree, as well as lots of cousins. We may even be able to get in touch with living descendants. I’ve been researching my family tree for 30+ years, and it’s remarkable to make such a new discovery, so close to my generation, after all this time. I wouldn’t have been able to trace my great-granddad’s death reliably, were it not for the 1939 Register going online, letting me find him, and be sure it was him with the right birthdate (day, month and year). And because that gave me his address, which was also where he died in 1946, I could confidently link things up. Magic!

Every few years I head to the Edinburgh Book Festival for a fun flying visit. Last time in 2013 was to see Neil Gaiman talk, and also the Iain Banks memorial event. This time I was there to see Ian Rankin talk about the return of Rebus, with a new novel, and a recent short story collection. Because of my MS-like illness, which means I need to use my wheelchair while in Edinburgh, it is easiest to drive down from Dundee. And because I need to rest after and before travelling it makes sense to stay in a hotel the night before and after. Which is costly, but we think is worth it for the treat. We make a real break of it.

So last night after Afternoon Tea at Edinburgh’s famous Balmoral Hotel on Princes Street we got a taxi to Charlotte Square, arriving at about 6.50pm. The site was packed, with people there to attend author talks, browse in the bookshops, and soak up the friendly atmosphere. Our first stop was to go to the two bookshops, where I bought a few books: one a Gaelic children’s book (I’m learning the language, slowly), and also two other books I’d been wanting to get for a while, on astronomy and the history of Edinburgh.

By 7.45pm we were waiting in the queue for people with reserved seats (mainly disabled people like me) and were in in good time before the event started at 8.15pm. As usual we had good front row seats, and a good view of the speakers: Ian Rankin, and Phill Jupitus who would be chatting to him for the hour.

Ian opened the event by reading an extract from his latest soon to be published Rebus novel Even Dogs in the Wild. This was interesting, and quite gripping, and made me want to read the book when it comes out. Indeed the whole event made me want to read more of the Rebus novels – I’ve read a lot of them, but not all – and also read (and reread where necessary) the short stories. I particularly liked the discussion after this opening read through about Rebus’s relationship with the gangster ‘Big Ger’ Cafferty, which Ian likened to Holmes and Moriarty. Coincidentally I’m currently reading Anthony Horowitz’s Moriarty.

After this opening section there was a more general discussion. Indeed I was relieved that they didn’t just talk about the new novel, but covered a much wider range of subjects, including as the book festival entry for the event had indicated the recent short story collection The Beat Goes On: The Complete Rebus Stories. As a big fan of short stories – partly for the form, partly because they are often easier for me to read due to memory and reading problems from my neurological disease – I was particularly interested in what Ian said about the joy of writing them, and seeing a new artefact as the end product in a pretty quick time, as opposed to the marathon many months writing that each new novel requires.

One of the most interesting sections of the talk for me was where Ian reflected on his breaks from Rebus, both more recently and in the past. His recent break was prompted by deaths in recent years of a number of friends, all at fairly young ages. So he didn’t sign a new contract for a new novel then, but took the chance to do fun things, including other types of writing – like scifi – that he normally doesn’t do, but likes to. This was picked up on to an extent in one of the questions at the end. It was a bit sad that even a very successful writer like Ian Rankin feels the pressure to write what will sell, and doesn’t have the time to write other perhaps more experimental works. But the benefits of his break were apparent.

I also liked his discussion of the writing process, both in terms of how many hours he works on the first draft of a novel, and also how he discovers plot and character through his writing. He spoke of an example where he had advance plotted a novel to great detail, and his agent loved the concept, but Ian felt no desire to write it after sorting out everything so much in advance! I don’t write fiction, but in my academic writing I often find that I am feeling my way through the writing process, coming up with new thoughts and ideas by writing, and it’s a process that I enjoy too. I could also relate to his reflections on the importance of getting away from modern pressures to write. He goes to Cromarty (“no wifi”) and finds that in a secluded environment the writing process can flow extremely effectively. He also knows of other writers who play white noise in their ears to chill out the sound of the modern world while writing.

Quite a large chunk of the talk was about Ian’s love of music, including his experiences being in a band. For quite a while there I thought Phill was going to try to coerce him to sing, but Ian dodged that, though he did share some of his lyrics with us – very dark and gloomy, and quite in keeping with much of his later writing as a crime novelist! He also shared some entertaining reflections on touring life from his brief experiences of that. And he mused on how he had been so tempted to buy a record shop …

Returning to the writing craft one interesting observation Ian made fairly late on in the talk was that he doesn’t like to over research books, to the extent of filling them with “look what I found out!” stuff in the say way that some other writers do, including in the crime genre. Though having said that, a constant running joke throughout the event was his struggle to keep up with the changing police situation e.g. current retirement age for police officers, location of CID units, even the terminology used. Phill joked that it was almost as if the Scottish police were deliberately trying to foil Ian’s writing.

There were only limited questions at the end, in the last ten minutes, but they were interesting, and all sparked off lengthy responses from Ian. Indeed during the talk Phill was a fairly gentle interviewer, typically providing a short starting point that Ian could use to explore an issue in more depth.

We skipped the signing at the end, though I’d brought a paperback copy of the recent short story collection just in case I decided to stay and get it signed. But we had a great time. And, as I said, I am very much looking forward to reading more Rebus on my Kindle (the main way I have to read now due to the brain damage and reading problems it causes). Though I think I’ll start with the short stories, because those are so approachable for me. Many I have read before, but a lot I haven’t, and should enjoy them all.

So thanks Ian! And Phill!

My husband and I are both graduates of Computer Science at St Andrews. Because of this we received invitations to go to a day celebrating Internet founding father Dr Vint Cerf who is to get an honorary degree this week from the university. The day had a large number of talks running from about 10am through to about 8pm at night. Because of my MS-like illness I couldn’t attend the whole thing, and we ended up having to choose between the morning session and the evening to drop. In the end we decided to come for the afternoon and evening sessions. I would have to use my wheelchair to last the day, but the venue is good on accessibility grounds, and I was given a university guest parking permit, which would allow us to park in a disabled space directly opposite the venue.

We got to St Andrews about 1pm. There was a slight hitch getting our visitor parking permit, because the front door to Computer Science wasn’t staffed, and the secretaries we tried phoning were all at lunch. But eventually it was sorted, we got parked, unloaded the wheelchair, and wheeled into the venue. We were even in time to grab a sandwich or two from what was left of lunch before the talks started at 1.30pm.

The first afternoon speaker, Julie McCann, was excellent, talking about embedded systems. She covered a lot in 45-50 minutes, in a lively and interesting talk. This was followed by 10 minutes of questions, before a brief comfort break.

I had to go to the toilet an *awful* lot due to my MS-like illness, which was a problem. We usually left while questions were ongoing, so I could beat any queues. But I lost count of how many times I had to go. On the plus we were at the back of the lecture theatre, with an easy way out, in a space left for a wheelchair user. And one of the students helping was very attentive at helping us get through the lecture theatre doors, both out and in. But it was a menace! But we just got on with things. At least I was able to go, and was comfortable.

The 2.40pm talk with Lars Eggert had to be somewhat curtailed for time – he had perhaps put together too many slides for the time available. But he gave a good potted history of the Internet, which I enjoyed. I was at university as a computer science student in the early 1990s, and am a little vague about earlier Internet history, so always appreciate a recap.

4.10-5.10 was a panel with all the speakers and chairs of the day, all sitting together on the stage, taking questions. I asked the second question, which was answered by four of the panel, for ten minutes or so in total. I was curious to know what difference it makes to be researching a subject – the Internet – which is in many ways ubiquitous now, and well-known to the public, who have a perception of it, and thus resulting expectations. That’s different from just about any other earlier aspect of computing history, and I wondered what the implications are for how academic research in the field is conducted. The answers from the panel were diverse and insightful, and there were many other interesting questions asked. I think this might have been my favourite “talk” that we attended, because it was so wide-ranging in its scope, and fascinating.

5.10-5.30 was another break. I’d just settled with my husband, when I spotted my former PhD supervisor come in. So I wheeled over and said hi. I had to leave a full-time funded Computer Science PhD at St Andrews in 1996, after struggling for two years with worsening ill health, after my progressive MS-like illness struck at just 22, just as I was starting the PhD. On the plus after leaving St Andrews I later retrained as an academic historian, picking up three more degrees, including PhD. But it was hard to leave St Andrews. So it meant a lot to chat to my former supervisor. I also filled him in on what my husband – who did complete a Computer Science PhD at St Andrews – was doing work-wise.

Then on to the evening session. 5.30-6.30 with Jon Crowcroft was fun, perhaps a little rambling in places, at times skipping too much over some of the really intriguing bits, which could be frustrating. But it was entertaining, and enthusiastic, and we really did feel as though he was a real hacker, albeit an academic one, who’d seen a lot over the years.

Then it was Vint Cerf at 6.40. He talked about the problems of preserving data and software in a digital age, which echoed many of my views. He also proposed a technical solution, though it raised a lot of questions in terms of whether there would be the political will or economic support for it. I would have liked to have followed this up in questions, but Vint was having some trouble hearing the questioners, and with me at the back, even with microphone, it might have been difficult practically. As it was there were plenty of interesting questions asked. He received very generous applause at the end, and a birthday cake (it’s his birthday today) from Fisher & Donaldson. Plus we all sang happy birthday to him.

The room was packed. It is a big lecture theatre, in the new medical building, and most seats were taken. It was a very impressive turnout, and the audience seemed to be enjoying things a lot, and were engaging a lot in the Q&A sessions, which were very lively and interesting. As well as my PhD supervisor we caught up with various other friends and lecturers at Computer Science, and had a great time. I wish we could have attended all the talks, but we had to make a tough choice. As it was I think it was a very worthwhile visit.

Last year I attended for the first time – but not the first time the conference had been held – the St Andrews Book Conference, as I blogged. Because of my MS-like illness I can only attend for a little time: at most a day there, and then a day of rest, and then back for the final morning. But if I’m weaker it’s just one day there. Yesterday the 2015 St Andrews Book Conference started, and I was back again for a single day. The theme this year was “Buying and Selling”, and I was among the speakers on the opening day.

Again I had to use my wheelchair, in a very old building. But again the conference organisers were very accommodating, holding the conference talks in a ground floor room with a disabled toilet nearby – which sadly I had to use alarmingly frequently, as my MS-like problems were playing up quite badly on the day. My husband was permitted to accompany me as helper, so he could fetch food and drinks, and help me manage the wheelchair around. And we were made to feel very welcome. St Andrews staff and students were also extremely attentive, often checking if I needed food or drink to be fetched. Very kind.

I had a lot of good chats during breaks over the day. The first was with a St Andrews book history PhD student who I’d been in touch with after last year’s conference. We chatted about shared experiences like writing a PhD thesis – which she’s doing at the moment. And I also got to meet a German book history professor who recently invited me to write a book chapter for a collection he’s editing. That was particularly useful – he was able to fill me in more on the publishing process, and I came away feeling very positive about the project, and the chapter I’m currently in the process of writing. Another contact was with a fellow Dundee history graduate, who is going on to postgraduate study. She read my PhD thesis as part of her dissertation work – wooh! And I had a great chat near the end with one of the professors who I’d asked a question after his talk, and he’d asked me one after mine. He was particularly struck by my brief passing evidence of a Scottish chapman – seller of cheap print, to relatively poor customers – carrying French language study books, which would conventionally have been assumed to be of more interest to the wealthy and elite. And we chatted about much else beside. All good.

Organiser Jan and St Andrews prof Andrew opened the event at 10.45, then the first session ran from 11-12.30. This session had three talks covering often the issue of debt and credit in early bookselling. One particularly interesting talk was by economist Jeremiah E. Dittmar, proposing an economics-based statistical analysis of lots of book prices, teasing out trends. This proved to be quite controversial, but was entertaining nevertheless, and certainly something different. I asked my first question of the day at the end of the session, the first of many I asked, and would have asked more, had time permitted.

The second session of the day ran from 2-3pm, with two talks. I particularly enjoyed the talk by French/TCD professor Jean-Paul Pittion, looking at the stock of a 1660s French bookseller. There was much he said I could relate to my own research from the 18th century, and it was nice that he gave us handouts of photocopies of the original book stock inventory to study. He was quite surprised to find a few women among the customers, thus revealing their reading interests, so I commented – as he probably knew already – that many women readers at the time would have been hidden in the records behind male relatives (husbands, fathers, sons or brothers) going into the bookshop for them. And I wondered which women might be more likely to go into a bookshop on their own then, which led to an interesting discussion about salon culture in Paris filtering through slowly to the provinces at this time, and these women going into the provincial bookshop being trend setters to a large extent.

My panel started at 3.30pm. Each speaker spoke for 20 minutes, Magdalena, then me, then my Dundee University history colleague Martine, then we had about 25 minutes for joint questions at the end. I sat at the table to give my talk, with a PowerPoint zapper to change slides. It was all going well until the PowerPoint screens cut out halfway through! Jan thought they had maybe overheated. I said that’s fine, I can go on without slides, though you will all miss my Fife map😉 So I proceeded, even holding up my Fife map printout so they saw what they were missing! But a few minutes later the St Andrews team got the visuals working again, so my visuals including Fife map were go once more. The talk came in just under 20 minutes, and I covered almost everything I wanted to. Then I returned to my wheelchair, before wheeling up at the end after Martine’s talk for a group Q&A. We all had lots of questions from the audience. For example I was asked about literacy rates in Scotland, the price implications of the copyright trials and subsequent price drops for bookseller business viability, rural book supply, and someone else asked about chapmen and others and where they got their books from. All are questions I can usefully feed into my subsequent book chapter version of the conference paper. We didn’t have overlapping questions though, because each talk was quite different. But I had a question for Magdalena, and it was a very fun Q&A all round.

After a brief break next up was the wine reception. Originally this had been going to be in the St John’s House garden, but they moved it into the main conference room, and overlapped it with the final session. We were filled up with drinks – wine (red or white) and beer on offer – before the first speaker, then offered a refill after him, and a refill after the next speaker, and a refill after the third one! Some people took everything on offer! I stopped the wine after the second glass – was already feeling quite light headed. I’m amazed the audience managed to come up with coherent questions afterwards. The last session was a lot of fun, talking about book collecting, including bibliomania, incunabula and libraries. There was a fantastic talk to close by Daryl Green a Rare Books librarian at the University of St Andrews, talking about skulduggery among the St Andrews university academics – including a principal! – in the 19th century, and possible deliberate theft by them of manuscripts. He illustrated his PowerPoint with animated images from The Ninth Gate, one of my most favourite movies, all about a book collector and various bizarre characters. Which provided much amusement. As did his visual casting of the 19th century St Andrews academics, for a movie version.

Things wound up a little before 7pm when people were relocating to the Vine Leaf. We headed off then, saying goodbye to various people. I had a lovely day, but was pretty tired after, and will be resting solidly for the next two. I’ve emailed the organisers and prof Andrew my thanks. I really appreciate them holding the conference on the ground floor so I can attend. It also clearly benefited some other people there, who either needed to use the disabled toilet quite frequently, or were rather wobbly on their legs.

I’ve since followed up by sending LinkedIn requests to a number of people I met and chatted with. Great contacts made. Great ideas sparked. And yes I will have to write another book chapter by September.

Follow

Get every new post delivered to your Inbox.

Join 71 other followers