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Posts Tagged ‘wheelchairs’

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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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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