Gather meeting software accessibility concerns re NarraScope 2022 interactive fiction conference

I was hoping to see some of this year’s online NarraScope interactive fiction conference in July. But I’ve just found out that it’s running on Gather this year, a meeting/conference system based largely on a virtual model of a conference area in the computer, top-down old-style graphics with little person avatars etc. Which all sounds fine and dandy, but I’ve known people struggle with it at large events. And for disability reasons I don’t think I could manage it successfully. It can also work very poorly sometimes on mobile devices, and I would be tuning in from bed. Luckily the talks will be recorded for later viewing, speaker permissions allowing. But I’m not signing up to attend this live. I have voiced my concerns about this software to the organisers, but it would be too late to change their plans now. Interactive fiction has a very large number of disabled users, many of whom might struggle to use Gather, for different reasons eg blind or partially sighted, hand control problems, cognitive issues re processing lots of info etc.

Gather meeting software in action

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5th Covid vaccine coming up

I’ve my 5th Covid vaccine coming up this week. 5th vaccine because I am eligible for the Spring Booster because I am severely immunosuppressed. Previously I had the usual first two Covid vaccines, then a special bonus 3rd primary because I’m severely immunosuppressed, then my first booster just after Christmas.

It is very likely – well almost certain – I will flare neurologically again after Covid vaccine #5. I have after the previous four Covid vaccines. If so that will probably wipe me out almost totally for another three months, starting about a week after my vaccine this week.

So this is probably my last week of a bit of respite – a bit because I am often waking up late afternoon even in this brief respite phase since the start of April after my symptoms finally eased after my 4th Covid vaccine in December.

I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My medics and I are agreed that I should keep getting vaccinated. My neurological flares I can recover from, even if it takes three months each time. It is also very likely I will get a 6th Covid vaccine in the autumn …

In no way is this an anti vaccination post. Vaccines save lives, and especially people like me who are severely immunosuppressed. I had a very poor vaccine response to the first two vaccines, but my bonus 3rd one (a special pre booster one needed because I’m severely immunosuppressed) gave me a healthy dose of antibodies, which could save my life. My first booster then extended that protection. Many severely immunosuppressed people have not had such a good response, despite loads of vaccines.

But the Covid vaccines take a terrible toll on me, because my auto immune neurological disease cerebral vasculitis is in my case so unstable. Each time I have a Covid vaccine I have three months of dramatically increased bladder incontinence, crippling headaches, sleeping up to 18 hours a day and phenomenal sedation even when awake, and appalling arm and leg control. It is amazing that I am not raging about this more. In my old consultant’s words I’m just too “phlegmatic”, which I eventually realised was a bit of a compliment!

I can access antiviral treatment if I catch Covid. I can also still access free testing to help me get treatment in time. What would really help though is to have the Evusheld preventative antibody treatment, which is designed to prevent severely immunosuppressed people like me catching Covid in the first place. But the UK government hasn’t bought any Evusheld yet, unlike just about every other comparable country.

Just don’t anyone say to me we are living with Covid, or even worse Covid is over, as a dental hygienist said to me the other week. I am getting through the pandemic, but at a terrible cost in terms of how the vaccines affect me. No way is it over for me, and many other people like me.

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Looking back at past inequalities in PhD funding and support

I’ve been taking part in an interesting Twitter thread today about problems faced by non affiliated or barely affiliated academics, essentially independent scholars without university support, including financial. It digressed slightly into different funding arrangements for postgraduates. I remembered how during my Dundee history PhD (2003-2010) many Scotland-wide PhD training events were for a long time only open to funded PhD students. I was initially unfunded for my history PhD, but later won AHRC funding. Even then as a part timer I got no stipend, unlike full timers. My PhD supervisor campaigned with others to get AHRC to provide stipends to part timers. This happened in time for me to benefit before the end of my PhD. As a part timer I was also initially ineligible for the Disabled Students Allowance, which at that time could only go to full timers. Fortunately that changed too. To be fair this is a long time ago, and much has changed. But still.

I could also go off on one about the poor support for me as a computer science PhD student from EPSRC when I fell long term ill. But that’s another story …

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