Minister supports view that having a disability is worse than dying of cancer

Here’s the thing about Cervical Cancer: It can kill you. Quickly. Painfully. While you’re still young.

Here’s the thing about HPV (Human Pappiloma Virus), a causal factor in Cervical Cancer: You can contract the virus via skin-to-skin contat. You don’t have to have unprotected penetrative heterosexual sex in order to contract it.

This is a fact I was unaware of until I was in my thirties, and I thought I was very well informed about safe sex. I was well informed – about safe sex for heterosexual and male homosexual sex. I new about condoms. I didn’t know about dental dams.  I didn’t know that I was at risk when having unprotected sex with my girlfriend. In particular, a promiscuous ex-girlfriend who went on to develop pre-cancerous cells in her cervix after we had split up. Thankfully, I’ve always attended for smear tests under Cervical Check, and the lab used by my health centre happened to check for HPV at the same time as examining cells from the smear. Not all labs do this, apparently.

Here’s the thing about Gardasil, the HPV vaccine that has been made available to all teenage girls in Ireland for the last seven years. Even IF it caused the ME, Chronic Fatigue Syndrome and POTS that some people believe it causes, THESE CONDITIONS ARE NOT WORSE THAN DYING OF CANCER. To put your daughter at risk of dying of cancer in preference to putting them at (an unproven) risk of a chronic, disabling disease is to suggest that MY life is not worth living.

Minister of State with responsibility for Disability Issues, Finian McGrath TD, publicly rolled in behind this view. He has since back-pedalled furiously, but that does not undo the damage he has done in putting young women at risk of cancer while simultaneously supporting the view that dying of cancer is preferable to having a chronic health condition in Ireland. There may well be times when I might hyperbolically support this view, but I would still vaccinate every teenage girl in the world with Gardasil.

The health service here has to take some of the blame for the false connection having been made between receiving the Gardasil vaccine and the onset of ME, CFS and POTS symptoms. Chronic fatigue and chronic pain syndromes often present in adolescence. My chronic pain cymptoms were routinely dismissed as “growing pains” throughout my pre-teen and teenage years. Having reached 40, I don’t think I’ve any growing left to do (except horizontally), yet the pains are there, the pains are worse, and they have disabled me. What’s more, I have continued to feel ignored and dismissed by the majority of health professionals I have seen down the years. Of those I have seen by whom I haven’t felt belittled or patronised, only one medical professional has even attempted a medical intervention to improve my symptoms, and one other attempted to get me a more specialised and specific diagnosis than “fibromyalgia”. So when a grown woman using a wheelchair and walking aids is treated this way by our health system, I can understand the frustration and panic of parents watching their teenage daughter struggle with similar symptoms.

Another chunk of responsibility must be laid squarely at the feet of Fine Gael arrogance.  At the launch of 2017’s vaccination campaign in August, Minister for Health, Simon Harris, said that parents should “butt out” (sic.) of medical discussions unless they were medical professionals. The director general of the Health Service Executive, Tony O’Brien, described social media campaigns like the parent group, Regret, as “emotional terrorism”, and went on to describe how members of the public were being duped by fake news on social media.  This kind of language is confrontational, patronising, and in no way seeks to bring concerned parents on board. These statements tell concerned parents that they are stupid and ignorant, that they should just shut up and listen to what the clever men are saying, and should stop trying to interfere in the important businesses of state.

I cannot help but wonder if one factor in this kind of response is that the origin of the complaints is teenage girls. Are their experiences being dismissed as “hysteria”? There are many health issues that affect more women than men which go uninvestigated, under-diagnosed and untreated. Chronic pain and chronic fatigue syndromes are very high up that list. Whatever the motivation or unconscious assumptions behind these comments, I cannot see the use of phrases like “butt out” and “emotional terrorism” making a worried parent change their views.

And so these comments do nothing to address the serious issue of a drop-off in uptake of the HPV vaccine – a vaccine for which we fought a decade ago. Vaccination of teenage girls has dropped to a worrying 50%, despite the reporting of associated symptoms also having dropped.

But I would still much rather be in pain and unable to run, dance and ride horses for the rest of my life than have cervical cancer. Yes, cancer is generally not the death sentence it once was. Yes, survival rates and quality of treatment has improved beyond recognition. But it is still a painful, life-altering, misery-making disease that can end your life long before you’re ready to die. It strips you of energy, the treatments make you feel like hell and everyone around you feels helpless and miserable too. Given the choice, I choose to keep fighting from where I am – in a wheelchair, protected from HPV.

Note:

For the background to this story, please follow the links within the article. Some of these links may be subscriber-only content from the Irish Times. Apologies if you are unable to view the specific articles.

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Three Utterly Empty Gestures Aimed at the Blind

 

You could say that any gesture aimed at the blind is an empty one. These are three of my favourites:

Relief Map of Edinburgh

A photo showing part of a bronze relief map with some of Edinburgh's streetscape in the background

This is a bronze relief map of Edinburgh, located at The Mound just off Prince’s Street

 

There is a plaque affixed to this bronze sculpture which reads:

PRESENTED TO THE CITY OF EDINBURGH BY THE STAFF OF MARKS & SPENCER, EDINBURGH IN 1984 TO MARK THE COMPANY’S CENTENARY. THIS RELIEF WAS CRAFTED TO ENABLE PEOPLE WITH IMPAIRED VISION TO ENJOY THE GRANDEUR OF THE CITY.

from Canmore.org.uk

This message is first in Braille, then in relief letters. Isn’t that nice? The important information, that this is a selfless gift from a thoughtful corporation to the poor deficient blindies for their edification and enjoyment, can be read by any literarte English-speaker.

Such a pity that the street names and all other text on the map is only in relief letters, not Braille. So you can count the many lumps and bumps that Edinburgh has to offer the curious traveller, but don’t expect any of those lumps and bumps to convey any useful information.

(I love Edinburgh, despite its cobbles and steps and impossible slopes. I first encountered this sculpture in 1995 while attending the Edinburgh Punk’s Picnic.)

 

Garden for the Blind, St. Stephen’s Green, Dublin

A visitor reading the Braille signage in the garden for the blind in St Stephen's Green, Dublin City Centre

A visitor reading the Braille signage in the garden for the blind in St Stephen’s Green, Dublin City Centre. From Yelp.com

Original image on Yelp.com

In St Stephen’s Green, in the heart of Dublin, there is a garden for the blind. It’s safely tucked away from public eyes, in an out-of-the-way nook that you would never find if you didn’t know it was there.

In this little nook is a wall, a little taller than waist-height if you’re standing. Along that wall is a series of bronze plaques, each bearing the name of a plant in Braille and in relief letters. In fact, this was my first encounter with Braille in a public setting, before I had learned to read Braille, and I distinctly remember recognising the “S” by comparing the Braille with the Latin characters. The names of the plants include Lamb’s Ears, a furry-leaved plant I rmember from early childhood, and Lavender, a plant I still make any excuse to brush against.

What a lovely idea. In Dublin’s iconic city centre park, a place specially constructed for blind people to access and appreciate plant-life. Shame no-one told the gardeners. Any time I’ve been there, the plants nearest to those signs bear no relationship to the named plants. On at least one occasion, the nearest plants were spiky and unpleasant to touch and smell. Another good idea gone to waste!

TCD Arts Block

Two images side by side, on the left, of the Arts Block, Trinity College, Dublin, labelled "Bladerunner"; on the right,a screenshot from the movie BladeRunner, labelled "TCD Arts Block"

Spot the difference… From The Daily Edge

Modelled on the Hanging Gardens of Babylon, apparently – but they used the wrong type of stone in the bricks, so they couldn’t grow plants in the cavernous ceiling blocks. But that doesn’t explain the Blade Runner motif running through the building, down to the blue toilet lights.

 Fiona Hyde, writing on TheDailyEdge.com

From September 1995 to November 2005, I studied Arts and Humanities in Trinity College, Dublin. All my lectures and tutorials took place in the infamous Arts Block. How to describe this award-winning architectural gem?
When I started, this was a 5 storey building. They built a 6thloor on top in the early 2000s, which meant I was travelling in an outdoor freight lift for a while. And nearly got carbon monoxide poisoning while taking an exam, since the builders’ generator was positioned directly in front of an air-vent intake. But I digress.
The first confusing thing about this building is that the floors are numbered using the  American system. So rather than having a ground floor with the first floor above it, you have level 1 with level 2 above it.
The second confusing thing is that the main floor, at street level, is level 2.
The third, and perhaps most baffling element of the design, is that each floor gets smaller as you ascend. This means there are fewer rooms on level 4 than on level 3.
BUT THAT’S NOT ALL!
Each room is given a 4-digit number, starting with the level number. So there was a tutorial room in the English Department numbered 4012, and the main Philosophy tutorial room was 5012.
But these rooms were not directly above one another, nor were they the same distance from the lift, nor were they in an analogous position in any way to one another. In fact, every floor in the Arts Block looks just similar enough to give you some sense of familiarity, but is laid out just differently enough to give a young person the experience of having dementia.
During my tenure, the room numbers were in black on a perspex panel screwed to the door near its top. Each door had a fluorescent light shining directly down on the door, with the effect that the closer you stood to the door, the more intense was the shine on this perspex panel, rendering the numbers even more invisible than their eye-level-for-giants positioning already did.
In one of my last terms there, one of my classes was scheduled in a room on level 3 I had never been in before. I think it even started 31**, rather than the cosy central 30**s, given it a truly exotic flavour. I don’t even know what the nearest Departmental office was. For the first time in nearly a decade, I decided to make use of something I had walked past repeatedly but never explored.
Tucked away in a discrete, out-of-the-way, randomly assigned corner of each floor was a big brown tactile floor-plan. I had stumbled across these – usually quite literally – on many occasions, thinking “Oh. That’s cool.”  Suddenly, I had the most genuine reason in the world to check it out.
“Ok, so this is the front of the building overlooking Fellow’s Square. So this must be the lift I’ve just come out of. I’ll see what the numbers are in the nearest corridor….”
“#1… #1… #1… Hmmm….”
“I’ll check these rooms further away from the lift. I’m pretty sure that’s the direction I need to go in….”
“#1… #1… #1…”
“…Oh…”
It turns out that this extravagant, visible, and probably costly, demonstration of how inclusive Trinity College was of its blind students was entirely without function. Or it may have had a function, (perhaps ticking a box on a funding form?), which had nothing to do with a blind person navigating the nightmare industrial-institutional fantasy that was, is, and ever shall be the Arts Block.
So there you have it. Three concrete (and bronze and paper) examples of how accessibility is not simply a question of building something and then forgetting about it. Nor is accessibility about non-disabled people deciding what would make their space more accessible without bothering to check with the people they are supposedly benefitting. My conclusion? That these monuments are a gift to the sighted public, so that they can feel smug and warm. And if we blindies and crips can’t make use out of these graciously bestowed gifts, we’re obviously not trying hard enough.

 

If you hear anyone complaining about the strike in UK’s Southern Rail, let me share three experiences i have had on driver-only operated trains.

1: On the Stanstead Express, the doors closed on my guide dog. She jumped forward onto the platform and the door closed onto my arm. I was just realising i would have to let go of the lead and leave her alone on the platform when the assistance i had booked spotted us and screamed at the driver to stop.
2: On a DART in Dublin, no assistance showed up to get me off the train. I hadn’t been put in a designated wheelchair space, so had no access to an emergency intercom. I was left on the train until it reached the terminus and the train was abandoned. I rang the station i had started, and eventually i was taken off the train and put in a taxi to get to my destination.
3: My local train station is often unstaffed as a “cost-cutting” measure, especially for the earliest and latesttrains. Thes trains are also the ones which don’t carry ticket inspectors, so the driver is the only Iarnrod Eireann employee around. One evening, a young driver did his best to get me onto the train using the ramp used for getting the catering trolley on and off. However, the driver had never used the ramp before, and had probably not been trained to do so. It was the wrong way round, so when my front wheels reached the train, the back wheels pushed the ramp away behind me. The driver managed to catch the back of the chair before it crashed onto the platform. Ever since, i have made double sure of the ramp’s stability before going near it.
For all this, i’m very glad i don’t have to use the next station down the line. Dromod is permanently unstaffed, and has two platforms connected by an overhead footbridge with loads of steps and no lift. If you use a wheelchair and want to use this station, you have to call well in advance so that the train pulls into the right platform.
Fewer staff always leads to worse accessibility.

Updates: MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Since publishing this blog post on Friday, I have done this radio interview with local station, Ocean FM:

Then, sitting in the doctor’s waiting room this evening, I heard this segment on RTE Radio 1’s Drivetime:

DriveTime – RTE Radio 1 – Monday 22nd August: Home Care Services

I have e-mailed the programme to point out the connection between the two stories. However, I don’t use Twitter! So please feel free to tweet @DriveTimeRTE

ORIGINAL POST:

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

We Forgot to Invite You – The Cruelty of Exclusion Through Thoughtlessness

A few years ago, I had a series of nightmares in which I was forgotten. One involved a group of my best friends getting together and going on my favourite radio show, and I heard the broadcast. They thought it would be a great treat for me, but I was deeply distressed that they never thought to invite me to participate in the show itself.

This is a feeling I encounter on a pretty regular basis. I get left out of the things I most want to be involved in because someone – or a whole series of someones – never thought to include me in the activity. Most usually, this is through genuine ignorance or forgetfulness, but that can feel more personally hurtful than explicit prejudice.

This is most often encountered via technology and new media. The scramble to optimise content for smart-phones has left non-visual learners and visually impaired people out of the picture from first principles. What I mean by that is that newer technological interfaces are deeply based on visual interactions. This is in contrast to traditional operating systems which are based on structured text. Text and code are much more open to non-visual representation.

I don’t have a smart-phone. I used to have an amazing mobile phone on the Symbian operating system which was one of the best accessibility aids I’ve ever used. It is irreperably broken now (it’s the motherboard that’s gone!), and I feel like I’ve been left ten years behind the rest of the world. I can no longer get a smart-phone type device without a touch-screen.

There are applications which purport to make touch-screen phones usable by the blind and visually impaired, but I can’t see the value in them. Sending a text message on a touch-screen phone would be like asking a life-long touch-typist (which I also am) to type documents using a point-and-click on-screen keyboard. Now, I know people who have written books using a foot-controlled pointer to pick out words letter-by-letter, but that was thirty years ago. For me, the sensible way to send a text is using the old numeric keypad. It’s galling to be asked to slow down my technological interactions by such a significant factor for the sake of sighted users getting to their information a wee bit quicker.

As my dear friend Felicity Ford put it, the exclusion of non-visual technology users from the smart-tech revolution is equivalent to a shiny new public building going up with flights of steps everywhere. Maybe they will put a ramp in, or maybe wheelies will have to find the servant’s entrance, ring a bell, wait for the back door to be unlocked and negotiate ten minutes of corridors and tiny lifts just to get into the public foyer. And by the time you get into the foyer, you discover that the people you wanted to meet up with have gone out to the smoking area, which is down a fire-escape. You’re left hanging out the door shouting down to your friends. Not the most inclusive feeling in the world.

I encounter both these forms of thoughtless exclusion at least once a day. The one that made me cry most recently was when I was told about a major public meeting discussing the exclusion of women in Irish theatre. I was told about the Dublin-based meeting the day before, and my first concern was that I can’t really travel across the country with less than 24 hours notice. I wouldn’t be able to arrange P.A. time to pack a bag, the train journey would be exhausting and painful, I probably couldn’t book an accessible hotel-room in Dublin less than a week in advance… it’s just not feasible unless I want to be out of commission for a week.

The promotion for this meeting and the associated campaign was largely done via Twitter. I don’t use Twitter. It’s centred around smart-phone users continuously scanning a huge volume of text to pick out relevant details. Any time I’ve encountered tweets over e-mail or other websites, I can’t make any sense of the constant abbreviations, hash-tags, usernames or links to pictures or articles. So I just don’t bother.

When I looked up the associated blog for this campaign, the first thing I discovered was that the tickets for the meeting were already sold out. However, there was a message saying they would try to set up live-streaming for the event, and that there would be tweets sent out over the course of the meeting.

The morning of the meeting, I checked my e-mail and the website to see if there was a link for streaming. There wasn’t. The website said to visit their Twitter feed for links to streaming. I tried going onto Twitter using a web browser, and was utterly overwhelmed by the volume of text, with no clear way of finding the one piece of information I was looking for. Lucky for me, I was on Skype with the wonderful Felix, and even before I asked her, she found the link to the stream.

That link brought me to yet another social media site, but it said I needed Flash to run the streaming (which I already have installed) and suggested using Chrome instead. I don’t know how to use Chrome with JAWS, so I exited Firefox and opened the link with Internet Explorer. There, the page said to try Firefox or Chrome, so I could guess where this chain was leading. It became clear from the streaming site that it was set up to run via smart-phones. The meeting had already been on for half an hour at that point, so I gave up and started to cry.

That was a morning’s work to get nowhere. Five years ago, I would have had it easier. For one thing, web accessibility was all the rage. We had the W3 accessibility guidelines, and companies like Google and Microsoft were busy building in screen-reader features to websites and applications. Then, tablets and smartphones became the huge money-spinner. The sighted world has leapt ahead in terms of communication, information access and entertainment, while non-visual learners find themselves left even further behind than we were in 2010. Assistive technology has come on in leaps and bounds since then, but all the development has had to focus on compensating for an increasingly visual world.

So I repeatedly encounter the feeling that my friends, or potential friends, are throwing these great parties. Some of these parties are upstairs with no lift access. Most of the time, they just forget to invite me.

The Case for Braille

Thanks to the luscious Felicia Day and her Facebook followers, I have just discovered 64 Oz Games. This is a small company creating Braille add-ons for board- and card-games. As well as bringing attention to the service, I wanted to share this particular post about why Braille is the best tool for VIP access to printed materials. It also suggests that the more Braille is available, the more VIPs will learn to use it. This is something I think really needs to be promoted.

In Ireland, services for the visually impaired are still largely constructed on a medical model. I got totally fed up of being encouraged to use my “residual vision”. The assumption was of acquired sight los, and that it was better to be as “normal” as possible, not giving in to the blindness label. This is very close to the approach of doctors and physiotherapists suggesting anything rather than using a wheelchair. That’s even if not using a wheelchair makes you so exhausted and pain-ridden that your life becomes a round of therapy, exercise and pain management, with nothing else to give your life actual meaning. Sure, I could use the vision I have, and take 2 hours to read one page of print, then have to rest for days before reading the next page. I’d much rather read in a non-visual format, using my “residual vision” to appreciate how the sunset looks this evening.

Anyway, Here’s the blog post!

Why Such A Focus on Braille? – 64 oz games

Web Accessibility – why bother?

So you have a working computer, an internet connection and some assistive technology.  That means you can access any webpage, right?

Wrong

It can be hard to explain what “web accessibility” is all about.  I thought I might furnish you with a couple of examples and a couple of general pointers. First, the examples…

Bouncers of the Internet – No blacks, No dogs, No blindies!

I’m sure you will have come across a “captcha” – that image of warpified text that claims to sort the machines from the humans.  Maybe you’ve even had a whinge about how difficult they can be to see.  If you don’t know what I’m on about, here’s an example from a Google page:

Screenshot of a visual captcha window from Google
Google Visual Captcha

I tried to understand the audio alternative about 15 times, then started to record my effort.  Bear in mind that I use JAWS, a screen-reading program that gives me audio feedback about what’s happening on my screen.  Every time you hear the word “Enter” and a slight pause, I have tried to submit my effort.  Instead of hearing the same audio again, a new audio file loads. I will give you some kind of prize if you think you can understand the words in any of the 16 captcha samples on this audio recording:

And that’s assuming the Captcha challenge even has an audio alternative, and that the button to request the audio alternative is tagged so that JAWS can detect it. These are by no means givens.

PDF – the universal format

PDF has come to be a standard way to access all kinds of texts. Sometimes, I receive a PDF attachment to an e-mail, which is supposed to carry all the information the sender wishes to communicate with me. Often, PDFs are used online for brochures and publicity – often graphics-heavy publications. They are also the standard format for academic papers and articles.

PDFs have plenty of accessibility features… if the author of the document has bothered to use them. More often, the author is concerned with how the text looks on the page, with neither thought nor care for the underlying code that orders the text. Weird things can happen to words in the most straightforward documents, with headings read as if each letter were on a separate line.

Here’s an example of how JAWS interacted with a price list for spa treatments. See if you can figure out what any of those treatments were or how much they cost…

Universal Access to All Knowledge?

The biggest kick in the teeth has to be my attempt to continue academic work. There are digital and online resources available now that I would have given selected body parts for when I was still officially a student. At the time, which is over 10 years ago now, I even attended conferences about digital humanities specifically to make known how they would be indispensible from an access point of view.

However, the effectiveness of digitisation varies wildly. The wonderful Internet Archive project, of which I’m a huge fan, still has no accessible means (i.e. keyboard-only) of uploading content. A search result has to be navigated using “G” to find graphics, rather than marking search result headers as headings. And then there’s the quality of the digitised texts themselves…

The quality of OCR (Optical Character Recognition) software seems to have progressed incredibly slowly down the years. Many OCR Engines seem to imagine that long text documents use an awful lot more random punctuation than I’ve ever come across. Exclamation marks (!) often appear instead of letters I and L, and capitalisation seems a matter of taste rather than of syntax. The word “arc” is apparently more commonly used than the word “are”… I could go on. Really. I could.

The fact is, if OCR is to have ANY value, it needs to be proof-read by a human being. Even then, JAWS will pick up the odd lower-case L that has been mistaken for an upper-case I. But just scanning a book and lobbing it up on the internet does not count as “Universal Access to All Knowledge”.

I have no desire to single out the Internet Archive as an offender. As I said, I love the project. It’s what the Internet was sent from Heaven to achieve. The most recent culprit (and I find at least one a week) for bad access I’ve run into (face-first) is Academia.edu. Never mind invisible buttons and menus that can’t easily be reached. Here’s an article I tried to read this evening. Apparently, it’s about Disability Arts. Here’s what JAWS says:

And here’s a few screen shots. I use visual themes on my PC which hurt my eyes less when I need to read the screen (at least I can still do that). The size of the text at the top of the first image should give you an idea of how big it has to be before I can read it. My mum uses similar settings, although she doesn’t use screen-reading software. So this is pretty much what she’d be faced with:

NOTE: This is NOT the fault of contributers to the site. It’s down to the programmers.

First Screenshot showing a paper on Academia.edu

Second Screen shot from a paper on Academia.edu

Third Screen shot from a paper on Academia.edu

Fourth Screen shot from a paper on Academia.edu

Fifth Screen shot from a paper on Academia.edu

That’s all I have the energy for right now. This is a big topic, and it affects me every single day of my life. No doubt, I’ll need to rant on it again soon…