What its like living with a series of allergies?

japanese nut allergy card

There’s been a increase in the number of allergy related news stories recently which I’ll be honest I welcome but its also really sad news too.

Allergic woman died after eating burger

Amy May Shead’s family warn ‘allergies can cause life-changing damage’

Pret baguette allergy cases before death

I felt very strongly as someone with multiple allergies of different strengths including the deadly nut/peanut. Its interesting reading Jessica Pan’s piece about what its like living with a severe nut allergy.

I know the word for peanut in Spanish, German, Italian, Greek and Icelandic. When I lived in Beijing for two years, the first sentence I learned to master in Mandarin was, “If I eat peanuts, I will die.” Then, to really get the message across, I would mime death. I’d clutch my throat, roll my eyes back and stick my tongue out. My audience, usually Chinese waiters, would laugh or look bewildered, but it was the most effective way to get the point across. It was blunt, but it had to be. I had a severe peanut allergy and I struggled to convey the gravity of the situation to locals in China, where nut allergies are rare.

I’m pretty much the same but having travelled around a lot. I have to be very clear when I say I’m allergic to nuts, peas, beans, coconut, fish and seafood. It was Japan when I learned to print out my allergies on a piece of paper.

Why paper? Because its something I can give to the wait staff to give to the actual kitchen instead of relying on the wait staff to convey all the allergies I have. One can be easily missed and all hell is unleashed into my body.

At dinner on my first night in Beijing, I told the waiter, “I’m allergic to peanuts. I don’t want peanuts.” He brought over my food and I peered into a dish, which was sprinkled in peanuts. “Peanuts?” I asked, pointing, knowing they were peanuts. He glanced at the dish and said, “Just a little.”

“Just a little” is the difference between alive and dead. Between the best holiday ever and an emergency trip to the hospital.

I’m happy to say this is less and less happening in the European countries I go to, due to the change in the law around the 14 allergens. Although I’m also getting some slightly more intolerant responses too like those in LEAF.

Now to be fair I’ve been told a few times especially in Japan, go away (more or less) but having to sign a wavier just makes my blood boil.

I’ve learned a few survival strategies along the way, though some of them I learned the hard way.

Friends who travel with me know that they must be my designated “tasters”. Most often, this task is left to my poor husband. So many holidays, so many memories, and so many moments of me shouting in his face, “Do you taste peanuts? Do you?!” A curry on a beach in Malaysia, hot pot in Chengdu, a baklava on a balcony in Greece, all with me staring at him intently, praying for the green light.

I have similar starting with the allergy card, ask friends, a touch to the lips and then a nibble. Wait for 3-5mins with water and antihistamines at the ready. I tend to eat between 2-5 depending on how certain I’ve eaten something allergic. I never leave home without antihistamines now.

There will be foods which I just won’t take the risk with and that does include some of the thai curries. If I think it might have something I’m allergic to in it, I will weigh up in my mind how close I am to my home, does the restaurant practice good separation in food preparation, how much is an allergic reaction going to ruin the rest of my day?

Maybe I should just stay home and not travel, but I love Asia and I really, really love Asian food. Instead, I take precautions: I nearly always carry an EpiPen with me. I also have a routine I do when I meet new friends or colleagues: I show them where I keep my EpiPen and I say, “Guys, just not through the heart, OK?”

The one and only time I was sick in Japan due to peanut sauce, I downed about 4 antihistamines drunk a lot of water then jumped in a taxi back. There is no way I want to be sick in a restaurant bathroom again! Especially because I tend to fall a sleep straight afterwards and trust me theres almost no where worst you want to fall a sleep. I assume its the antihistamines taking effect but it helps, just like a full sugar pepsi/coke after I wake up. Maybe its the sugar and the goopiness of the cola which helps line the throat and stomach.

allergy tests bottles

I don’t carry an Epipen due to having high blood pressure and idiots watching too much pulp fiction. (not the heart for goodness sake!). Given at the wrong time and I’m dead full stop. I’ve managed to stay alive by being super cautious and its worked for me.

Just because I don’t have an epipen doesn’t mean its less serious by the way. I’ve seen many people instantly think it cant be that bad if I don’t carry an epipen. No I’ve been very fortunate, cautious and suspicious of everything I eat or drink. Trace amounts don’t have enough of a effect fortunately too.

I sometimes cook with small amounts of Soya sauce but give me Tofu and its game over. Likewise I can eat Tuna chunks out of a can but fresh fish will have my body forcefully getting rid of it in the quickest way possible.

I try my best to avoid peanuts, but they lurk in so many dishes. I never order massaman curry, desserts with praline, anything with mole sauce, trail mix, granola or Thai salads. No to anything that even looks like satay, no to exotic alcoholic spirits. All foreign chocolate must be studied meticulously.

Everything is studied heavily by me and if there is no ingredients, I will likely avoid it. This means street food or stuff made on the fly almost impossible. Everyone talks about the street markets of Osaka in Japan but I found it impossible to eat there.

To be honest, although Japan was very tricky. Rules like avoiding all soup/noodle things helped reduce the contact with allergens. I think I would have a even more difficult time in China or Thailand. The pure thought of having to deal with a barrage of allergens makes me not want to go. Something most people barely think about when flying to places. I would love to be one of those people trying different things but its super dicey and not worth the risk, so I avoid them.

The puking bit is actually fine. It’s the waiting bit that is the worst. It’s looking for hives on your tongue and swelling in your lips and wondering, “Is this the stupid mistake that ends my life?”

Puking is the worst I’ve had for a long long time, aka its been a long time since I ended up in hospital. I’m one of the lucky ones where my allergy doesn’t send me straight to hospital. However this should never be dismissed as those hives on my lips and tongue are nothing compared to the endless scratchiness of my throat. Then the swelling and before long its difficult to breath. This is also when I desperately need my inhaler (not something I carry around all the time) but can’t pull enough air through my throat to breath correctly. At that point I realise its all down hill, its the point when I start to make mistakes due to the lack of oxygen going to my brain.

Its scary but I’ve only had a few times when I was much younger and it does mean slowing down and doing less.

I recently had to learn the Polish for peanut, frantically searching for it on Google Translate after carelessly taking a bite of chocolate in my hotel room last summer, although I already knew it was in the chocolate. It was that same ominous tingle on my tongue and my throat, followed by hot fear racing through my body.

Google translate is my friend, its not perfect and in some languages slight wrong but it gets the point across and thats all I need.

Look, I know allergies are boring. While visiting Koh Samui, I mentioned my peanut allergy so much that the Thai staff at my hotel greeted me every morning with, “Hello, Miss No Peanut!”

Its something most people never have to think or deal with. For example I’m writing this on a train from Bristol to Manchester with a change at Birmingham. On the previous train a woman sat eating cashew nuts, then dropped the bag on the ground (litter bug). Now on my last part a woman sits eating a Kitkat peanut across from me. I lean back in my chair but the smell of peanuts is heavy and I dying for her to finish the bar quickly instead of little bites at the edges.

The smell of death just hovers around and it makes you want to run for cover. I’ve drawn comparisons to when someone is smoking in your face, you might be able to deal with it for a short while then you have to move away.

Its something most people never think about but I do all the time! I’m also consciously watching where she touches on the train, to make sure I don’t touch it too.

Allergies are boring I get that, everytime I have to pull my allergy card out at a new restaurant or place. But its deeply dangerous for me and many allergy suffers to underestimate them.

My hope is stories like mine and Jessica will put a human face to the jokes about throwing peanuts at people. Pret’s labelling is just horrible as I found out that the Korean BBQ soup included fish. But I only found that out when asking for the actual legal allergy menu and not trusting the ingredient menu they include in store.

The living room of the future at the V&A museum

Living room of the future at the V&A Museum

Recently I had the joy of taking the living room of the future to the Victorian & Albert museum as part of London design week’s digital weekender. Its something I mentioned a few times previously.

It was quite a weekend with 97 people going through the experiences; Lancaster Uni’s living room primer, the original living room experience (as we had in Liverpool) and special showing of the S3A’s vostok.

We likely could have had more but the V&A’s maze like design made it very difficult for people to get to our ground stand in time for the 5min tour to the living room experience on the 3rd floor unfortunately. We actually over 200 people signed up via the free eventbrite link.

I personally apologise to everyone who couldn’t find our space on the ground floor or turned up late because of the maze like experience.

Lancaster Uni’s living room primer

The Lancaster’s living room primer using visual perceptive drama to make the point loud and clear. It uses Visual Perceptive Media footage to tell the story of the Break Up, which was written by Julius Amedume back in 2015.

Its quite a playful experience and is much more explicit about what its doing as a whole. This is why I call it a primer for the living room.

Living room of the future

Living room of the future

The original living room experience in full effect

Showing off the ambient nature of the experience which can be built using the living room framework. It was created with artists from the Western Balkans and Czech republic, and made possible with 3 UK universities Nottingham (databox), Lancaster (iot) and York (obm), FACT Liverpool, the British Council and our successful bid for the Objects of immersion.

It really shows whats possible with something much more abstract than explicit.

Living room of the future at the V&A Museum

Living room of the future at the V&A Museum

The Vostok-K Incident – 3D Spatial Audio demo

We always wanted to use 3D spatial audio in the original living room but we built the living room using similar technology as our timeframe for research was quite different. Its clear we would use S3A in the future. You could imagine a S3A app running on Databox, keeping the same privacy first HDI framework model we pushed earlier on.

You can read a lot more about it here and try it out for yourself here

Living room of the future at the V&A Museum

Living room of the future at the V&A Museum

All three experiences show off the possibilities and what could be coming to your living room in the near future. Looking forward to seeing what others could do with these technologies?

Next few weeks, are a busy one…

Ian Forrester

Its another busy few weeks and to be fair few months for me (lets not go there now).

This weekend I’ll be hosting the living room of the future in the V&A Museum in London. I can’t tell you how excited I am about the 150+ people who have signed up already.

Then the week after I’m keynoting about the living room of the future at Hello Culture Remix at BBC Digital Cities in Birmingham.

This right before I head to Bristol for a Object based media workshop at Encounters short film festival. I’m also really happy to be judging the xR short films for Encounters.

After a short break its off to the York Mediale to see a commissioned Object based media project with the University York’s Digital Creativity lab, this may also involve a public talk.

Not too long afterwards, theres Mozhouse/Mozfest (however this time I’m not wrangling) but October/November is another post maybe…

Shambhala, hypercoasters dream

https://www.flickr.com/photos/cubicgarden/44745706101/in/album-72157594191989581/

I certainly have a love for B&M Hypercoasters like Shabhala in Port Adventura. Currently the 3rd highest in Europe at 249.3 ft. I assume we don’t have any in the UK due to the massive amount of space it requires?

Somewhere between getting food and riding Shambhala, I caught a candid shot of this lady sitting on Shambhala’s landscape with a nice pictures of Shambhala in the background. If it wasn’t for Dragon Khan in the background, it would almost seem like a snowy scene in the himalaya?

Shambhala

Great sunset on a excellent ride….

https://www.flickr.com/photos/cubicgarden/42935852470/

The Living Room of the Future at the V&A Museum – this weekend!

The weekend of the 22-23rd September 2018, the living room of the future will be at the London Design Festival’s Digital weekender at the V&A Museum.

Tickets are still available but there is a waiting list for certain times. Of course if there is space we will add you to the audience, but we do have a physical limit on each showing.

Come and visit us and give your views… See you there!

Digital licence woes and problems ripped large

https://www.flickr.com/photos/will-lion/2593488374/i

Digital licensing and ownership has been discussed in the past a lot, back then it was therotical. But its interesting to revisit the discussion in more modern times with the new ecosystems which have become common place.

Ok fair enough it’s from Torrentfreak but still interesting a read.

The digital world has made it much easier to buy and consume entertainment.

Whether it’s a movie, music track, or book, a shiny “buy now” button is usually just a few keystrokes away.

Millions of people have now replaced their physical media collections for digital ones, often stored in the cloud. While that can be rather convenient, it comes with restrictions that are unheard of offline.

This is best illustrated by an analogy I read a few years ago in a research paper by Aaron Perzanowski and Chris Jay Hoofnagle, titled: “What We Buy When We Buy Now.”

I bought a Chromebook

https://www.youtube.com/watch?v=YDIhZZJQWRw

The other day my work Dell XPS 13 which has been running Ubuntu 16.04.1 asked me to upgrade. This message has been coming up for a while but I decided it was time for a upgrade, 18.04 was running well on my server and well it was time.

However the upgrade broke and I was left with Ubuntu 18.04 with Busybox. I had backups but as it was a BBC R&D build of Ubuntu, I needed to go to work for them to reinstall it. All of this was just before I went away to Mydata 2018 in Helsinki. On top of that my ubuntu server also had a problem.

Double wammy!

It was clear I could reinstall Ubuntu quickly but I would need to do a bunch of configuration and that takes time. I have a task to create a live CD with a bunch of configurations just for me, incase similar happens again.

I’d been looking at Chromebooks since I bought one for my parents ages ago and seen how ChromeOS has matured. I’m not the only one. It was the ability to run Android and Linux apps which pushed to get one.

Google Makes it Easier to Run Linux Apps on Chromebooks

So I bought the Asus chromebook flip c302, and I’m quite impressed with it. The size is good and the performance is good. As a backup laptop its ideal. It also kinda a solution to my lack of a decent tablet now my Nexus 7 is pretty much dead. I was tempted with the Google Pixelbook but it seemed too close to what the Dell XPS 13 is for.

I did consider getting a second hand XPS and sticking ChromeOS on it myself actually.

Airbnb illegal audio monitoring?

Airbnb monitoring warning

Me and my partner decided on Airbnb for our trip to Barcelona. We found one  and booked it. Generally the flat was ok,

However there was a warning on the kitchen door, stating they are listening for noise 24 hours a day and will cancel bookings if there is loud noise. Looking around I think the device is this thing…?

Airbnb monitoring warning

It certainly put a terrible taste in our mouth and made us feel uncomfortable. Although we didn’t complain straight away and by the time we thought about it, the internet connection was down and if its really connected and not a poor joke; it was no longer going to work. Didn’t cause the host(s) to come and find out what was wrong, even with us complaining about the lack of internet (I debugged it as much as I could, but ultimately we had European roaming data and wasn’t in the flat that much)

This has to be a breach of privacy and I’ve finally complained to Airbnb. Especially after rethinking and re-reading things like this.

Update – Thursday 13th Sept

Since my tweets/toots and this blog post. I had quite a lot of people and journalists get in touch… But I still have seen nothing from Airbnb or the host. So I decided to take one of the journalists up on their offer in a form of social justice. No idea how what I wrote will come across or be edited but as I was seeking out the legal ramifications of what the host had done, I saw this on the Airbnb help site…

Rules for hosts
If you’re a host and you have any type of surveillance device in or around a listing, even if it’s not turned on or hooked up, we require that you indicate its presence in your House Rules. We also require you to disclose if an active recording is taking place. If a host discloses the device after booking, Airbnb will allow the guest to cancel the reservation and receive a refund. Host cancellation penalties may apply.

With that I rewrote to Airbnb and Airbnbhelp to demand a refund on top of everything else I previously complained about.

Sure to update everyone once I hear something….

Update – Friday 15th Sept

I was contacted by Airbnb by phone, the woman ran through a few questions and we talked about what happened again. She agreed this was clearly a breach of the Airbnb terms and could see the listening device and the warning in a few of the photos (as like me, knew what to look for). She said they would block/ban that listing which they have done. They also issued a refund to me and my partner, which is great news as our un-comfortableness certainly had a slight affect on the holiday in Barcelona.

Personally I’m glad I found the Airbnb term above, as that drove things along much quicker. Previous to that, it seemed not a lot was being done?

In our conversation, it was worth noting an Alexa, Google Home, Baby monitors, etc would count as listening devices which must be declared upfront before the guest books.

From Airbnb…

To summarize, we will follow up and investigate the host’s account following your report of a surveillance device in the listing. We take these reports very seriously, once again, thank you for bringing this issue to our attention. Your participation helps keep Airbnb a safe and trusted community.

If you have no control over your identity you are but a slave?

How self sovereign identity could work

Its twice I heard something similar to this now.

First time was from Gregor Žavcer at MyData 2018 in Helsinki. I remember when he started saying if you have no control over your identity you are but a slave (power-phased of course). There was a bit of awe from the audience, including myself. Now to be fair he justified everything he said but I didn’t make note of the references he made, as he was moving quite quickly. I did note down something about no autonomy is data without self.

Then today at the BBC Blueroom AI Society & the Media event, I heard Konstantinos Karachalios say something very similar. To be fair I was unsure of the whole analogy when I first heard it but there seems to be some solid grounding for this all.

This is why the very solution of a self sovereign identity (SSI) as proposed by Kaliya Young and others during Mydata speaks volume to us all deep down. The videos, notes from that session are not up yet but I gather it was all recorded and will be up soon. However I found her slides from when she talked at the decentralized web summit.

This looks incredible as we shift closer to the Dweb (I’m thinking there was web 1.0, then web 2.0 and now Dweb, as web 3.0/semantic web didn’t quite take root). There are many questions including service/application support and the difficulty of getting one. This certainly where I agree with Aral about the design of this all, the advantages could be so great but if it takes extremely good technical knowledge to get one, then its going to be stuck on the ground for a long time, regardless of the critical advantages.

I was reminded of the sad tale of what happened to Open ID, really hoping this doesn’t go the same way.

British Digital Corporation? Radical thoughts?

Jeremy Corbyn and Labour

You might have noticed I haven’t been blogging much recently (there are many reasons) but I’ve been doing a lot of reading and have a ton of things to blog.

One such thing is Jeremy Corbyn’s 2018 Alternative MacTaggart Lecture or rather his big, bold, radical thinking on the future of our media.

Big and bold maybe, radical? I’m less convinced but the interesting part is section 4, where he outlines plans for a British Digital Corporation.

The final idea I’d to share with you today, which I hope will generate some new thinking, is about how we, as a public and the media, as an industry take advantage of new technology.

I want us to be as ambitious as possible. The public realm doesn’t have to sit back and watch as a few mega tech corporations hoover up digital rights, assets and ultimately our money. This technology doesn’t have an inbuilt bias towards the few. Government is standing by and letting the few take advantage of the many using technology.

So, one of the more ambitious ideas I’ve heard is to set up a publicly owned British Digital Corporation as a sister organisation to the BBC. The idea was floated by James Harding, former BBC Director of Home News in the Hugh Cudlipp lecture earlier this year.

A BDC could use all of our best minds, the latest technology and our existing public assets not only to deliver information and entertainment to rival Netflix and Amazon but also to harness data for the public good.

A BDC could develop new technology for online decision making and audience-led commissioning of programmes and even a public social media platform with real privacy and public control over the data that is making Facebook and others so rich.

The BDC could work with other institutions that the next Labour government will set up like our National Investment Bank, National Transformation Fund, Strategic Investment Board, Regional Development Banks and our public utilities to create new ways for public engagement, oversight and control of key levers of our economy.

It could become the access point for public knowledge, information and content currently held in the BBC archives, the British Library and the British Museum. Imagine an expanded Iplayer giving universal access to licence fee payers for a product that could rival Netflix and Amazon. It would probably sell pretty well overseas as well.

I find this interesting mainly because I still think the BBC is still best placed to do this, rather than set up a new corporation. If I didn’t think this was still true I’d be rethinking what I’m doing at the BBC.

The thing I do think could work is a collaboration between different existing companies/institutes/organisations to a make something like Corbyn is talking about.

Now that would be radical…?

Maybe it really time to drop twitter…

Dead twitter

I use to use Corebird on my laptop for twitter access. Today this was broken and with a quick search found a page explaining all.

As many of you may know, Twitter decided to remove the UserStream API, which many third-party clients use, including Corebird. It’s a vital part of the user experience and is used for real-time timeline updates, DM retrieval, mentions, etc.

The replacement is the Accounts Activity API. I have not looked much into its details since the technical difficulties are enough to make it virtually impossible for me to port Corebird to it, but what I know is that real-time tweet updates aren’t supported and the prices are well beyond what I could possibly pay (“$2,899 per month for 250 users”).

Now, there would be a few ways out, of course. Porting to the Accounts Activity API is off the table, but other protocols exist. Since Corebird has never been anything else than a Twitter client, there is no abstraction for the Twitter API however, so porting to another protocol will be a lot of work again. Since I’m not a student anymore, I can’t promise to do any of that work. The master branch is additionally in a very WIP state with the ongoing GTK4 port and a bunch of other features.

The API removal will take place mid-August, so Corebird will mostly stop working at that point. I do not know of any real alternative that is not twitter.com of course.

If this explanation was too convulted, http://apps-of-a-feather.com/ has one as well.

I’d like to thank everyone who helped me over they years and all the patrons on here especially for all the support.

Seriously… I’m so very very close to dropping twitter, as although I benefited greatly from it in the past. They seriously have over stepped the mark and my alternative Mastodon is growing massively. I already stopped cross posting to Facebook after their decision to drop automated posting.

Its time to regulate Airbnb…

No Tourists allowed - thanks for your collaboration

There has been a lot said about Airbnb in the media and to be fair I have talked about it myself a few times. But I keep on reading them anyway. Then I read the comment is free piece in the Guardian, right before I go to Barcelona too.

Barcelona is a city-break destination practically all year round, which means it’s struggling with more than just a surfeit of drunken stag parties and queues outside tapas bars. Landlords have realised they can make more money out of short lets to well-off Airbnb users than from renting to conventional tenants who live and work in the city year round, so when contracts come up for renewal it’s not uncommon to find the rent suddenly shooting up to levels that young Spaniards can’t pay. Once they’re forced out of the neighbourhood, the empty flat promptly disappears into what’s still sometimes euphemistically known as the “sharing economy”, although what happens next sounds like the antithesis of sharing. Those lucky enough to own a desirable property get steadily luckier, by pimping it out to the highest bidders. Meanwhile, those who don’t have such an asset become ever less likely to get one, as property prices are pushed up across the city. Thus does inequality harden, and resentment deepen, while the failure of mainstream parties to solve the problem drives the young and frustrated ever closer to the political fringes.

All the stuff mentioned in others but then, but then the killer to my hippyish ideas for Airbnb.

So much for the earnestly hippyish vibe of the original Airbnb model, which was supposed to be all about creating a cosy-sounding “global community” by linking up adventurous strangers in search of more authentic, home-from-home travel experiences. And so much, too, for the idea of democratising the travel industry by letting the little guy make a buck on the side. In some tourist hotspots Airbnb is now morphing from an amateur operation into a slick professional one, with landlords amassing multiple properties just as they once did with buy-to-let, and using agencies to manage their burgeoning empires.

The romantic, if sometimes risky, fantasy of swapping lives with a local for a few nights and seeing the city through their eyes is being replaced with a more corporate, impersonal experience. Sign here for the keys; check out promptly in time for the next guest to arrive. Too bad that what could have been a young couple’s starter flat is now just another asset to be sweated, and one that probably stands empty half the time.

As the piece says and I am somewhat in agreement about regulation in this sense, as things have gotten out of hand. But the pressure needs to come from both sides and I don’t know if people care to do the right thing? For example there are still a lot of listings on Airbnb for Barcelona which don’t have the LUT number which is required for Barcolona Airbnbs now.

it’s uncomfortable knowing that your cheap getaway comes at such a hidden cost, guilt seems unlikely to put many travellers off

It would make sense if Airbnb would check this somehow or even more fundamentally, provide a space to input this info and highlight it to potential Airbnb guests. Right now you have to tack it on the end of the description which isn’t ideal.

When looking for somewhere, I asked a few Airbnb hosts for their LUT number and one all but laughed in the message back. If Airbnb really gave a crap about whats happening to these cities and locations its the least they would do.