Dealing with an invisible and fluctuating neurological illness

I wanted to blog a bit about what my life has been like since 1994, and the struggles I cope with that people can’t see. There’s still very much a perception among the public and medical staff that you can judge someone’s health by looking at them, or in a short interview. This is the core basis of many things, including benefit assessments, medical consultations etc. But for fluctuating largely invisible illnesses it’s hugely flawed.

I fell ill with what would turn out to be cerebral vasculitis in 1994, aged just 22. This is a literally 1 in a million diagnosis (no I’m not making that incidence up!) and it can be very difficult to diagnose. I was misdiagnosed with ME at first, and only diagnosed properly in 1997 after brain scans and then many more tests. My form was initially similar to ME but then changed to be closer to multiple sclerosis, in a somewhat relapsing-remitting form, but also rather progressive. I’m not going to recount the whole medical history, which is summarised online. But it’s a struggle to stay alive, and it’s amazing I’m still here 21 years after that delayed eventual correct diagnosis. Chemotherapy, steroids and immunosuppression drugs (many lifelong) keep me alive, and slow down further brain damage.

What I wanted to focus on in this post is the invisible and fluctuating nature of my illness. Since not long after 1994 I’ve used a stick permanently, and more recently two. And since the late 1990s I’ve had my own manual wheelchair for occasional use. Yes those are visible signs of disability, and people do, thankfully, usually notice them, and take them into account. But other than this I can look very well. Chunky from steroids, but otherwise looking well. If I had a pound for every time someone said “You look well!” I’d be rich. Each time I want to cry – it’s not how I am. But what can you say. I get particularly exasperated when a medic says it.

What someone looking at me can’t see are the hidden symptoms. They can’t see how I struggle to control my bladder, and have to wear incontinence pads permanently, since I was in my early 20s. They can’t see inside my brain, to understand how as a conversation goes on I get more and more brain tired, have more trouble hearing, speaking without slurring, and just thinking full stop. All things that worsen as I’m more tired, that you won’t see, until it gets extremely noticeable, and by then it’s probably far too late for me, and I should have gone back to bed to rest long before then.

You’ll see me for just a short time when I get out, but won’t see how much I’ve had to rest – sleep solidly! – the day before any appointment or meet up, so I’m well enough to manage that outing. And equally how I will be knocked out and sleeping solidly both after I get home and the day after, because of what the effort to get out takes out of me. I make this effort because I want to have fun, and do things, but it always takes a lot out of me. Yes I may be smiling and happy when you see me for a short time, but I’m exhausted before and after, and it’s not easy.

Also I may use a wheelchair one day, and other days not. Or get out of my wheelchair part way through and walk with sticks after. That doesn’t mean that the wheelchair wasn’t needed, and that I’m fine. It just means that it’s done its job helping me to do what I need to do. And yes, I will still crash badly afterwards.

Nor do you see how much I need to sleep. As my disease has gone on over the years I’ve found that I need to sleep more and more. The amount increases during a relapse or flare, and can go as high as 18 hours total a day, every day, day after day, for weeks or even months. As the inflammation in my brain reduces the amount of sleep needed per day usually drops too, but it’s never anywhere remotely near normal. Often it’s as though I’ve been given a horse tranquilliser, and I’m very sedated and confused. I can’t fight it – if I do I risk at best making myself vomit uncontrollably as my body fights back, or at worst more serious brain damage happening, if I push myself too far. I’ve learned the hard way that I need to go along with my body, and that this increased sleeping is my brain’s way of protecting itself, especially during increased periods of disease activity. But it’s still difficult. And other people usually haven’t the remotest clue. They’ll think I have the normal amounts of time that others have per day to do things, whereas in reality I’m snatching odd hours here and there, as I can, sometimes weeks or even months apart. My first history PhD supervisor used to say he marvelled at how productive I would be in such a short time, which I found a really insightful and understanding comment.

One of the most infamous medical interviews I had was with a neurologist, who because I’d completed a PhD was convinced I couldn’t have significant brain problems. But I did that PhD in the most difficult circumstances. Part-time yes, but way more part-time than that sounds. For much of the time, including writing my thesis, I was working on the PhD in one hour chunks, spread throughout the week, for no more than five hours total a week. After each hour, for example writing more of my thesis, I would be so brain tired that it would take me up to a couple of days to recover before I could have another hour’s go. All because of my brain disease. But nope, I looked fine clearly, and this neurologist had no understanding. Luckily I didn’t rely on him for treatment,

I’m tired now, so will wrap this up. But I hope it’s given an insight into what living with an invisible and fluctuating disease can be like. If you have a friend or family member with something like this, please think twice before saying “You are looking well!” It may not be the most supportive way you can help them. And don’t prejudge strangers you encounter, including with Blue Badges.

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Visit to Edinburgh Book Festival in August 2018

My husband and I visit the Edinburgh Book Festival every other year or so, and were back again last week. We’d booked to go and see a talk by Brian May and photographic historian Roger Taylor. But I was also keen to see the bookshops again, which I always find excellent.

This is the first year that I’ve found the crowds a particular problem. I have to use my wheelchair when I’m there, with my husband pushing, and this year getting past other visitors, who’d often stop to chat in the walkways, was a significant problem. I don’t know if there were higher numbers of people attending this year, or what, but it seemed more of an issue than usual. Note we were there on Wednesday 15th August, in the late afternoon and early evening.

I was also struck by how difficult it can be to get the wheelchair into the tents, bookshops, talk venues etc. There’s always quite a slope to go up, and a ridge to get past or bump over. I could never wheel myself in. Even my husband, who’s been pushing my wheelchair for years, struggled, again not helped by people milling around.

On the plus the bookshops were a delight. I always find things there that are real gems for me, that I wouldn’t know of otherwise. My particular highlights this year included a book of 100 Gaelic WW1 poems, most of them written during or shortly after the war, with dual language Gaelic and English translations facing each other in the book. My other main highlight was finding a book of essays by Philip Pullman about storytelling in its many forms. I was reluctant to buy such a chunky book – I have too many books already, and wondered where I’d shelve it! But it drew me back, and I was very pleased to take it away and delighted when I started reading it. Something else I’d have bought before had I known it existed.

Book haul from Edinburgh Book Festival

The talk by Brian May and Roger Taylor was fantastic. They were speaking about Scottish Victorian stereoscopic photographer George Washington Wilson, and launching Roger’s book about him. The audience were all given 3D glasses to wear, which worked from a vast range of seating positions, and enabled us to enjoy the original stereoscopic photos. Quite magical, and enormous fun. Sadly Brian and Roger couldn’t do a signing afterwards, having to dash off to a BBC interview, but we were all offered signed bookplates to go in the book.

Audience at Brian May and Roger Taylor talk (photo by Nicole Ettinger and from Brian May on Instagram)

So a fun trip, but some disability niggles. We’ll be back in future, but definitely with my wheelchair, albeit anticipating problems.

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Problems as a disabled academic attending conferences

Inspired by a very thorough piece in the Guardian newspaper today by Kate Sang I wanted to reflect a bit on my own problems attending academic conferences.

Decades ago I was a young and healthy academic, about to start a computer science PhD. I could attend conferences in their full form: going to all sessions, all days, including meals and socialising.

Shortly after that I fell ill, at just age 22, with a neurological illness very similar to multiple sclerosis. It took some years for me to be diagnosed with cerebral vasculitis, but by then I’d had to drop out of that science PhD. Fortunately I retrained part-time as a historian, picking up three more degrees, including PhD. My disease is incurable, progressive in my case, and is treated lifelong with chemotherapy drugs and steroids to reduce brain inflammation and slow damage.

I can’t work in a paid form due to my illness. It is severely disabling. I sleep for much of the time, sometimes up to 18 hours a day, every day, due to the brain damage and inflammation. And even when awake I am often very confused and can only work for short periods. Near the end of my history PhD I could only work for five hours total a week, in one hour chunks maximum, spread over many days. But I finished the PhD. And I am now active as an academic. I publish academic journal papers, undertake new research projects, and speak at conferences and attend as an audience member. I have an honorary research fellowship from my university, though costs of attending events etc. are paid by myself.

Whereas 25 years ago I could attend a conference in its entirety, now I have to pick at most one or two days, with a day of rest in between. I will also usually have to be modest in my expectations re the number of panels to attend.

Firstly there are the practical issues of getting to the conference. I’m typically travelling with a wheelchair, which usually makes connections by train etc. difficult. Normally if I am flying to a venue it is far easier to get a taxi – albeit costly – from the airport to the hotel. But this only works if it’s within reasonable and affordable travelling distance. A few years ago I was invited to speak at a book history conference in Germany, which would have been very good for my research interests and academic networking. But the venue was far away from the airport I’d be using, and a taxi trip would be quite impractical in journey time and cost terms. Nor could I rely on being able to access trains. So reluctantly I declined the invitation. Fortunately I was asked years later if I would like to contribute a piece to the conference’s collection of essays. I submitted my piece, and the book is due to be published in a month.

Even on the spot physical accessibility is a major concern. I normally now use two sticks, but when at a lengthy academic event I need to use my manual wheelchair – with husband along to help push – to manage to last the day. And getting into and around academic venues can be highly problematic.

One thing I should praise is I’ve found conference organisers usually very helpful in helping my husband attend as my carer. He shouldn’t have to pay, since he is just there to push me around and help me navigate obstacles like doors etc. He is also an academic, but in a very different field from me. So he’s not there to listen to the talks. Most conferences allow him to attend for free. That is enormously helpful, and not something I expected. We still have double travelling costs, but not paying double conference fees does ease the cost for us to a certain extent.

Though against that positive experience very few academic conferences offer daily registration fees. At least in my field – humanities – you typically have to pay for the full conference or nothing. And with me often only attending half or even a third of the conference this makes them particularly costly for the time and benefit that I’m going to get in return from the event. Sometimes I do get a reduced attendance fee though. I am particularly grateful to a recent conference organiser, who given how little I was going to be there, let me attend for free. And my husband as well of course. Thank you Drew!

Once there, if a venue has stairs to reach talks I cannot possibly attend. Sometimes organisers move rooms, which I am very grateful for when it happens. But it’s not just about the room where the talks take place, but also about getting into a toilet, and getting to meals. I have severe bladder incontinence from my brain damage, which in particular causes huge problems with urgency and frequency. I need to go to the toilet a *lot*. Having a wheelchair toilet beside the room is good, but if I have to go constantly during the talks – as has happened – it can be very awkward.

One conference that I regularly attend relocated to a ground floor room, with a toilet beside it, which is good. But the meals including lunch were elsewhere in the building, and I would not be able to get there, without major difficulty. It was far easier for me to stay trapped in the room during the lengthy lunch break, while my husband fetched food for me. This cut down the vital networking with fellow academics I could do, though thankfully some historian contacts specifically sought me out at these times, and had lengthy chats with me in the room on my own. Likewise the book stands of academic books to buy at this conference were upstairs. No way could I get there. So again husband was dispatched, with iPad, to take photos for me to browse, and also to bring any specific titles of interest down to me to look at. In this instance the Brill publishing rep actually came downstairs to take the order from me directly. He was keen to help, but it was still frustrating for me not to be able to browse through all the books in person.

Sometimes I attend conferences with multiple streams of talks on at once, in many rooms, even a dozen and more in one case. For these conferences I will always try to let the organisers know in advance which specific panels I want to attend, to make sure I can reach them ok on the day, and rooms can be swapped in advance if need be. But that only works if the messages are passed on correctly at the other end. At the SHARP 2016 book history conference in Paris, at the Bibliotheque Nationale, I’d checked all the talks in advance, and was assured by the organisers that I would be able to reach them. When I got there on the day I found a panel I very much wanted to go to was up many stairs, in a building without a lift …

But perhaps the worst aspect for conferences for me as a disabled academic is how intensive they are, and how crammed the days are. Often they start at 9am or even 8am, and continue until 6pm or 7pm, with a packed set of talks running throughout those periods. Very tiring in brain concentration terms, and much stamina needed to get through. I understand organisers are trying to fit as much in as possible for attendees. But it is exhausting, even for fit and healthy academics, who can find it wearing. For me it’s impossible to attend even a full day of this. So sometimes I’ll have to choose morning or afternoon, or if I am lucky afternoon and evening. Or I need to try to factor in some sort of rest time, which is difficult in a venue that I don’t know well, crammed with conference goers. I remember at an Ada Lovelace event in Oxford a few years ago that I went back into the main lecture theatre – then deserted – during lunch, to have a bit of a rest, and quiet time to myself, while everyone else socialised out in the lunch area. That quiet time refreshed me enough mentally to allow me to stay for some more talks in the afternoon.

I know that it’s unusual for someone to be as bad as me health-wise and still want to attend academic conferences. But the problems that I have described aren’t unique to me, and some of them – especially issues of fatigue and mobility issues – will be shared by other academics. Not all of these academics will be so obviously disabled. I remember that when one conference I mentioned above was moved to a ground floor venue this turned out to benefit quite a few other attendees, who would not have said anything before. So more accessible venues can benefit a wider academic population.

In practical terms I’m not sure how much longer I can keep attending academic conferences. And if I do it will have to always be done in a modest way, within my limitations. With travel costs, and logistical challenges, there is a trade off between costs and benefit. I will have to continue to decide if it is worth it for me. But for now it is. I just hope not to run into too many practical challenges in future conferences …

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A day’s visit to SHARP Paris book history conference

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.

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Accessing historical archives as a disabled user

I recently gave a talk to a conference for archivists on my perceptions as a disabled user of archives. I have a progressive neurological disease, and sometimes use a wheelchair. More significantly I am very knocked out for a lot of the time, due to brain damage, unable any more to spend long periods working in an archival environment. This is despite me having used archives extensively since the mid 1980s, including a very intensive period a decade ago, when I worked half-time as a Research Assistant for a university project, and my job was just to go to archives and spend long periods there. My disease hadn’t progressed so far at that stage. Things have changed a lot for me since.

Many archives are in cramped locations. I was asked recently to give feedback on a consultation on a particular archive, and one of the points I made was that I hope it might at some point be relocated to a more accessible location. At the moment I struggle to get around there even when just using my stick. When using my wheelchair, which I need to do if I’m going to be there for any quasi-extended period, it’s very hard for me to get in there, and almost impossible to move around the small search room. And as I said at the conference this isn’t just an issue for wheelchair users. Many people have mobility issues, especially older people, and making an archive more accessible can benefit a large number of users, and not always just those you might expect.

Fortunately the archive’s staff are very helpful, and will help me as much as they can. But there are limits to what they can do. This is why I’m such a fan of digitisation on demand. This is very different from an archive initiating digitisation of a major record resource that they decide upon. Rather it’s where a specific user needs to access something – which may be many pages long – and it is digitally photographed or otherwise digitised, so they can work on it at home. I was very lucky during my part-time PhD that various archivists agreed to this. For example my husband photographed nearly 1000 pages of library borrowing records in the Scottish Borders archive at Hawick. And the archivist waived the copying fees (which often have to be paid, even when a visitor does the digitisation themselves) because the copies were needed for disability reasons. And likewise I borrowed many thousands of digital images of testaments and inventories from the National Archives of Scotland, and was able to work through them, looking for evidence of book ownership.

The other key thing for accessibility in my circumstances is good cataloguing of archival material. This is very variable across Scottish archives: some have virtually no catalogues available online, others poor ones, all the way through to better archives with more detailed catalogues. By putting catalogues online, and making them detailed enough, potential visitors or users of the archive can do extensive research from home. If they can then visit the archive themselves then they can make the most of their time there. If, like me, they have to ask for remote copies they are likewise in a good position to do that. Lots of other speakers at the conference also spoke of the importance of cataloguing. I think it’s under-recognised by archive managers, or at least some seem to view themselves as the gatekeepers of archives, and requests for information must be filtered through them. But good catalogues empower users, and give them the opportunity to do essential groundwork themselves. And I think they should be improved where possible.

I closed my talk to the archivists with a list of recommendations for archivists to improve accessibility. I will repeat these here, for the benefit of any reading:

• Would ask archivists to consider how accessible their search rooms are, including the layout within the room itself. This is potentially of great benefit to physically disabled archive users, but a more accessible layout can benefit users in general as well, for example tables and chairs that are easier to move around, paper catalogues easier to access etc.
• As a counterpoint to that ask you to be more aware of the potential need for people to research at a distance, and do not always assume lengthy on-the-spot research is practical or the default approach, and consider enabling other modes of provision for users
• To that end make sure that online catalogues are as detailed as they can be, and improve them where necessary
• As well as archivist initiated digitisation projects archivists should consider supporting digitisation on demand, including permitting digital photography of records, whether a per page copying fee is charged for such photography, or waived for disability users

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