It’s my f**king money….

This post is going to be about what it’s like to manage your money while blind. I’m sure there is plenty of prurient interest in the best way to scam a blindy, but I’m not going to cover that here. I am going to talk about just how useless, ableist and thoughtless government agencies and banks are when it comes to treating us as human beings with rights like everyone else.

My metaphorical eye (actually my ear) was caught by this Irish Times headline on 7th April 2020:

Coronavirus: Lack of electronic transfers for blind allowance causing hardship

The article by Social Affairs correspondant, Kitty Holland, was discussing the piecemeal approach of the HSE when it comes to issuing the Blind Welfare Allowance.  Some regions are offering to issue the payment via Electronic Funds Transfer (EFT), while other regions persist in sending out a physical cheque, which needs to be taken to a physical bank branch and physically lodged into an account. In this era of social distancing, self-isolation and cocooning, this presents a real challenge to blind people trying to stay healthy.

But the problems are deeper, further back in time and more bizarrely convoluted than that. Strap yourselves in…

You’re blind, not disabled….

If you are “registered blind” in Ireland, you are special. I mean that in the worst possible way. In terms of social welfare supports, we’re not treated like other disabled people. We receive the Blind Persons’ Pension, not a Disability Benefit. As the “Pension” part of our payment suggests, the payment is managed by the Old Age Pension office – just one of many examples of structural ableism, lumping the disabled and the elderly together. I’ve been a pensioner since I was 18.

Here’s one example of just how ludicrous that system is. While I was at university, I went onto the “Back to Education Allowance” – another misnomer, as I had been in education continuously since the age of 2. The allowance meant I could access an annual book allowance, and could essentially hang on to all my other benefits. When I finally left university, I was setting up as a self-employed sole trader, and wanted to switch onto the “Back to Work (Enterprise) Allowance”. Again, a misnomer, as I hadn’t been technically unemployed. Again, this was a scheme that facilitated me hanging on to benefits while setting myself up as self-employed. Imagine the day when I rang up the Old Age Pension office:

“Hello; I’m currently on the Back to Education Allowance, and I want to switch to the Back to Work Enterprise Allowance.”

“Ummm…. Hang on there while I transfer you to someone else.”

I got transferred about 5 times. Sure why would anyone in the Old Age Pension office know the first thing about either Educational or Work benefits?

So what’s this Welfare Allowance thing?

Good question. On top of the weekly Blind Pension, whereby I qualify essentially for the maximum amount of social welfare, there’s a means-tested Blind Welfare Allowance. I get this monthly, and it’s meant to “offset the additional costs associated with being blind”.  It’s not enough to pay for specialised eyewear, magnification, Braille production, assistive technology or even having a working iPhone, (rapidly becoming the de facto do-everything assistive bit of kit for blindies). My Welfare Allowance tends to cover getting an order of toiletries, some books, new underwear…. anything that isn’t a daily or weekly expense, but requires a bit of capital. Shouldn’t that kind of thing be covered by the weekly basic payment? Yes; yes it should, as many people on emergency benefits during the Covid-19 crisis have discovered. As soon as there was a massive increase in the number of people signing on for unemployment benefits, those who expected their jobs back afterwards kicked up shit about how little money they were expected to live on, and the government increased that payment from €220 per week to €350 per week.

I dream of such riches.

But there’s Braille on ATMs, right?

On to the banks. These are becoming less accessible as time goes on. The Braille markings on ATMs are really just adding insult to injury. Fine, I can tell that this is button number 1 and that is button number 6. But there’s no way in hell of finding out what those buttons actually do. I once tried to use an ATM that had a little headphone socket to hear what  was on the screen. In fact, I deliberately moved my account to that bank (which no longer exists) because they had a lovely ramp up to their door, push-button doors into the branch and this magic ATM. Imagine my surprise when no audio came through my headphones. It might have had audio information when it was first installed, but no-one had checked that it was still working. They might never have checked it at all.

But I’m sure many bankers have seen those Braille-marked buttons and assumed that it made the machines totally accessible. The concept can be quite difficult to explain to Ableds. I once had to explain to a local authority that their info-terminals were no use to a VIP, even with JAWS installed. If you can’t see the touchscreen, how do you know which part of the screen to touch to make it talk?

Then there’s the increased automation of bank transactions; a transparent move by corporations to save money by employing fewer humans. This is the same trend that has seen smaller, rural branches cut to destruction. My local bank branch has a load of machines which they do everything in their power to make you use instead of going to a counter and speaking to a human. By “everything in their power”, I include the practice of charging 600% for a “staff-assisted” transaction in comparison to an automated transaction. I’ll say that again. If you go to a counter and lodge your Blind Welfare Allowance cheque with a member of staff, it will cost you 6 times as much as using one of the machines.

Why not just use the machines?

I sincerely hope, dear reader, that you can guess where this is going. The machines are not accessible to VIPs. Furthermore, in my local branch, they are surrounded by privacy shields which don’t provide enough space to get near them in a wheelchair . So disabled clients have no choice but to make “staff-asisted” transactions, and pay 6 times as much for the privilege.

I’m not even going to approach the tawdry history of my struggles with online banking, especially with the use of card-readers with tiny buttons and invisible screens. Back to the Kitty Holland article…

Cheques and Balances

Aside from the usual thrill of coming across any mention of disability in mainstream media, this article grabbed my attention because I had just been sent a letter about this very issue. And yes, I mean a letter. In tiny print. In the post.

I could tell that it was from the HSE because their logo was on the envelope. So I didn’t even bother opening it until my trusty PA came round. She’s my trusty PA because she’s the one I trust to see me naked, file my private papers and have access to my bank details. When she arrived for work, I handed her the letter, saying “This is probably another normal-print letter from the HSE saying: We’ve just realised how ludicrous it is to keep sending you cheques when you’re not supposed to leave the house at the moment, so here’s a form you can’t read so that we can finally lodge the money straight into your account, which will also save your extravagant bank charges.” To my astonishment, my PA said “Yes, but not in those exact words!”

To recap, this was a letter and a form being sent out exclusively to blind and visually impaired people. Neither the letter nor the form was in an accessible format, and the form required filling in by hand. Their only nod to alternative formatting was the possibility of emailing the completed form back to them. So when I emailed it to them, this was the body text I included with my message:

Please find attached my form requesting a change to receiving my blind welfare allowance.

  • The letter should have been sent in an accessible format – I use Braille
  • The form should have been available in an accessible digital format.

My rights to financial autonomy and privacy have been violated, as I had no choice but to get a third party to fill in this form. Further, the form was not specific to people in receipt of benefits, and as such, was confusing and made us feel like an after-thought, not a priority.

As you are managing a fund specific to blind and visually impaired people, you should instigate policies of informational accessibility as a matter of urgency. It is your obligation under the UN Convention on the Rights of People with Disabilities (CRPD), to which Ireland is a signatory.

Why do I still have to send these messages to government agencies? Especially those tasked with supporting VIPs and disabled people? It’s getting old, and the novelty is wearing very thin.

Lockdown

Seriously, I’m grand.

Life under Covid-19 lockdown isn’t massively different for me than my version of normal. The biggest differences are that I’ve spent much longer on the phone than previously, and that when I order my weekly groceries, the official wait time for deliveries is 2 to 3 weeks.

It does feel somewhat that everyone else is getting in on my act. They are taking my delivery slots, using my mobile broadband and planning their outings. We’re coming to the end of March, and I’ve spent more time out of my house this month than I did last month.

I spent today with my head under a metaphorical duvet. This is not unusual for me, but I have reflected on why I chose that strategy today. It’s because I had intended to call back two people who called me during the week, and who I would really like to catch up with. I didn’t answer their calls when they came because I was resting or asleep when they called. This, also, is not unusual for me.

What is unusual is the sheer volume of calls and messages. It is nice when my neighbours call to let me know I can ask them if I need anything. But catch-up calls are a different matter. It’s got me thinking again about social spoons.

If you don’t know about spoons, read about the Spoon Theory on TheSpoonTheory.com.* It’s a concept related to pacing, which anyone who’s ever used an OT will be familiar with. To be fair, I didn’t know what Occupational Therapy was, even after I shared a room in college with someone who is now a professor of Occupational Therapy. I only encountered OT as a client when I first stayed in hospital attempting to get a diagnosis for my chronic pain condition. (That was in 2007, and I got my diagnosis of Hypermobility Spectrum Disorder in 2019).

Both Spoon Theory and pacing are about managing your limited energy and resources. There’s room in the market for a lovely app to help manage spoons, and design a pacing plan – I use a combo of 3 or 4 apps to do this. Having followed intensive pacing plans and found ways to pace myself under a variety of circumstances, I still have a huge problem with social spoon management.

Social encounters are important. They are so important that the HSE deliberately cut back on supports for “social hours” about 10 years ago. And my friends and family mean a lot to me. But it takes spoons to give someone quality attention. And the problem with managing those types of spoons is that you don’t want to take a break after 20 minutes of conversation. You want to keep going and get as much as you can from the contact. And then you’re fucked for the rest of the day. Or the week.

Maybe I need to think of these as “Emotional Spoons” rather than “Social Spoons”. After all, some people take more emotional work than others to spend time with, even if that work is worth it in the long run. I’m sure everyone (i.e. not just spoonies) has avoided a difficult conversation, or kept someone at arm’s length because something else needs your attention. And a good social interaction may be one where you leave with as many spoons as you arrived with – every spoon you spent on the other person gets replaced by the spoons that person spends on you. Maybe that’s asking too much. After all, the original “Spoon Theory” article revolves around the emotional power of how you choose to spend your spoons.

So really, I’m grand. The lockdown is more or less normal life for me. I had to rearrange or cancel several medical appointments during February (before the ZomPock). The bad weather and lack of access to transport was a bigger barrier to me having a life outside my house than any public health concerns. Two things I would ask, though: please don’t expect my capacity for long conversations to be magically increased because you suddenly have time on your hands. And maybe, when it’s all over, remember what it was like. Then, by all means, give me a call.

* I couldn’t access either TheSpoonTheory.com or ButYouDontLookSick.com this evening – it looks like the site is down. It does, however, have a Wiki page: The Spoon Theory on Wikipedia

Two weeks of Insufficient Support

Earlier today, I tweeted this thread:

twitter.com/madicarmoody/status/1130784542338572288

Here is the text:

I just answered the phone while on the toilet because it was from #PhysicalAndSensoryDisabilityServices. The manager, Joanna McMorrow, had told me yesterday evening that she would ring me first thing this morning. She didn’t. When I rang, she was “in a meeting”

It was a different person who just rang me back. The same person who left me a message Monday of last week to say they would review my #PA support hours in the middle of *last* week.

The original “plan” was for a review after 2 weeks at home from hospital.

That deadline passed yesterday. Again, they didn’t call me, I had to call them. Joanna was in meetings yesterday too. I eventually got to speak to her directly (the only time so far) when I found a mobile no. with her name attached on my phone.

It’s especially hard to have to chase these people up constantly because I’m not sleeping well, I’m tired all the time because I have insufficient support, and often have to sleep during the day.

I should be recovering from surgery, not fighting a slippery bureaucratic system.

This is not #IndependentLiving. This is not #dignity or #autonomy. I may not be begging on the street, but I’m made a full-time beggar by a system built on the assumption that I am lying, and that I am not the expert in my own needs.

@FinianMcGrathTD – shame on you.

(Note: Finian McGrath is currently a Junior Minister with responsibility for people with disabilities).

@HSELive – learn the difference between the #SocialModel and the #MedicalModel

(Hint: you are running a health service, all of which is based on #MedicalModel. If it was #SocialModel, I would be asking the Department of Social Protection, or the Department of Justice).

(Note: HSE is the Health Service Executive, a QuANGO established to run health services, including disability services. Its main function is to create several levels of management between the Department of Health and the citizens it is supposed to serve.)

@SimonHarrisTD – you do have an ultimate say in this. It is #StructuralAbleism and every time you pass the buck, you are letting us know that you don’t think #PeopleWithDisabilities are full citizens with full #HumanRights. Shame on you.

(Simon Harris TD is currently Minister for Health.)

This is #MyDisabledLife in your constituency. (Tagged a number of candidates for the 2019 European Parliament elections, ballots this Thursday, 23rd May.)

I tried to create a playlist of my video diaries last night, but couldn’t find a way to do so on the app. So here is a link to the channel, where I have been posting “My Diary of Insufficent Support” for the last two weeks:

https://www.youtube.com/user/coleenocasturme

Thank you for reading and watching. This fight isn’t over.

My Diary of Insufficient Support, Day 1

Hello again Internet!

It’s my first day home after 2 weeks in hospital. I’m pretty tired and rambling in this, taking the length up to nearly 9 minutes… sorry!

I had 2 hours of PA support after getting home this evening. Please keep sharing and discussing the issues around #disabilities, #IndependentLiving, #ChronicPain, #EDS and #VisualImpairment.

Until next time…

Click here to watch the video on YouTube

My Diary of Insufficient Support – Day 0

Hello Internet!

I am being sent home from hospital tomorrow without any extra PA home support hours. So I’m going to document daily life recovering from surgery without sufficient support at home.

The video is over 6 minutes long, and I will return someday to type up what I said. In the meantime, if anyone feels inclined to do that for me, then please message me, you beautiful human!

Until tomorrow…

Click here to view video on YouTube

*** UPDATE ***

The stupendous Kelly managed a transcription which is the pinned comment on YouTube. I think it was automated, so here’s a slightly tidied (and punctuated!) version:

hello Internet! A

pologies for the weird

lighting but I’m in a hospital ward in Sligo University Hospital. It’s my last night here; I’m being sent home tomorrow, after having some pretty straightforward back surgery nearly two weeks ago. I could have gone home a week ago, but we were waiting to hear from the manager of Physical and Sensory Disability Services for the Northwest, to see about an application for extra Personal Assistance home support hours for the recovery period when I got back from this surgery. The surgery was originally scheduled for the beginning of February, and prior to that, with my local service provider, LAPWD, we let the manager, Joanna McMorrow, know that this surgery was going to happen; that I would need extra PA support once I came out of the hospital. Apparently, at one of the monthly planning meetings, she said, “Yes, we’ll arrange that for you”.

So, over the course of this last week, nurses here at the orthopedic unit have been trying to contact joanna McMorrow; sometimes they were ringing several times a day, they were sending emails, they were sending in paperwork – because they didn’t want to send me home without having sufficient support, so that I could survive.

Now, I’ve just had the back surgery, but that is in the context of having a long-term chronic pain condition, since 2007, that has significantly worsened over the intervening 12 years. It’s related to soft tissue problems, unstable joints and hypermobility, which hasn’t yet properly been diagnosed. and other Zebras out there will know which diagnosis I’m talking about not having. I use a wheelchair for getting out of my own house. Although with the drop of mobility that I’ve had over the last couple of years, I will be getting a lightweight manual wheelchair to use within my own house. But even that’s going to be restricted because it’s a small house. That’s arriving on may the 14th.

I’m also pretty much blind, which a lot of people don’t necessarily take into account, especially not when they see the wheelchair. I use a guide dog, who has also been trained as a mobility assistance dog by IGDB, the Irish Guide Dogs for the Blind. I can’t read any print. Basically, in order to leave my own front door, I need to have the power chair and the guide dog. In order to function at home, I need to have Personal Assistance support for meals, cleaning, including washing my own hair, laundry, paperwork, filing… most things on most days I could use PA support.

I’ve had 15 hours of PA support for the last ten years, or maybe even more. Prior to that, I had 10 hours per week of support, and that was when I was, if you like, only visually impaired, not mobility impaired. With that 10 hours, and ambulatory mobility, I was able to be self-employed, running drama-based workshops, educational and arts-based workshops, as well as doing my own research into early Irish literature – which I still do some work on. (On Story Archaeology, which you can look up and subscribe to.)

I’m telling you all this because I haven’t been given any extra hours. I’ve been told to rearrange my existing hours, yet again. This is about the third time that I’ve applied for extra hours, and been told to rearrange my existing hours.

So the way it’s going to work is that I’ll be getting one hour of support each morning, and then one further hour each afternoon, and then I’ll have a spare hour somewhere in the week. I don’t know how I’m going to manage on that, but what I’m going to do is try and furnish you with daily reports, so that you can see how insufficient that is; and also maybe get a bit of insight into daily life with multiple disabilities; and how available support systems for somebody in my position are really falling so far short of the mark.

So I will leave it there for this evening, this being Sunday

the 5th of May. So tomorrow I will be going home. I’ve already ordered my shopping online, and my local supermarket has very kindly said that they can do the picking and delivery on a bank holiday Monday – because it’s me, because I’m a long-term customer of theirs. So big shout out to Glancy’s Supervalu of Carrick on Shannon! This is not a sponsored message.

I will check in with you tomorrow after I’ve had chats with at least one of my existing PAs, who’s going to be losing, I reckon, more than 50% of her current income, possibly having an increase in her travel expenses because of this rearrangement.

So wish me luck for the journey home tomorrow.

I will check in with you, O Internet of People, in 24 hours or so. Goodnight.

Updating “Web Accessibility – Why Bother?”

I have begun work to update my post, “Web Accessibility – Why Bother?“, in the light of the Irish government finally ratifying the UN Convention on the Rights of People with Disabilities (UNCRPD).

(Note: it only took our government 11 years from signing the Convention in 2007 to ratifying it in 2018. They have yet to ratify the “Optional Protocol”, which would enable Irish citizens to hold the government to account in terms of implementing the Convention.)

I wanted to get a list of all the countries who have signed and ratified the Convention, so I followed a link to a page on the Office of the High Commissioner for Human Rights (OHCHR). This is the page I was brought to:

http://indicators.ohchr.org/

The only way the information I was looking for was displayed was in an untagged image map.

The upshot of all this is that I’ve just e-mailed the Office of the High Commissioner of Human Rights as follows:

Hi,

I have been researching the UNCRPD with specific reference to provisions for accessibility to digital information. I visited the following page to obtain a list of signatories to the UNCRPD and its optional protocol:

http://indicators.ohchr.org/

I could not find such a list accessible to a blind person using screen-reading assistive software, only an “interactive map”.

I hope you can appreciate the irony of being unable to access information relating to the right to access information! Can you please ensure that any information presented in a graphic is also presented in simple, accessible text? Otherwise, it could be embarrassing to the UNOHCHR!

Very best wishes

Isolde Carmody

Visually Impaired citizen of Ireland

You couldn’t make it up!

Here is the text of what I said in the above video:

 

Hello!

You may or may not know that, for the first time in the up-coming referendum, blind people – finally – have won the right to a private ballot. Up until now, there was no way to have a private ballot if you couldn’t read the ballot paper and write on it yourself.  As a  work-around, for many years, people like myself have been entitled to the postal vote. But in fact, this was a system that was set up for people who could not physically get to a polling station on the day of the vote. So it was used as a way of ensuring that people with disabilities, particularly in rural areas, could still manage to get a vote.

However, it was not a guarantee if you had a disability. A couple of years ago, in Dublin, my mother was turned down the postal vote because she had a guide dog and access to public transport.  It was deemed that she could get to her polling station without any extra assistance. So then it became an issue of: How are you supposed to vote privately when you can’t see the ballot paper?

Robbie Sinnott succeeded in taking a case to the Supreme Court [*] under the Equality Act [**]. It means that, this time around, in polling stations around Ireland, there will be a Braille and large print template that will sit over the ballot paper, which will facilitate people with visual impairments and blind people being able to vote on their own. However, this does not extend to the postal vote.

I am going to demonstrate to you why it does need to be extended to the postal vote. I have difficulty leaving the house sometimes. My pain condition fluctuates massively from day to day, as do my energy levels. It could well happen that, on the day of a vote, I would not be able to get out of bed or out of my house. I am also visually impaired. So I am going to show you why the postal vote needs to have that template as well, in order to make sure that I also have the right to a private ballot. Which, currently, I don’t.

[In this section, I am going through the papers in the envelope containing my postal ballot paper]

This arrived in the post the other day. [Opens envelope.] Inside, there is… well, there’s a big paper-clip, so I know there’s a load of things clipped together.

So, that is what looks like the ballot paper. Now, in this case, it’s a referendum, so there’s only a yes or no. That’s relatively simple for me to work out. However, I’ve been presented with ballot papers with twenty-plus names on it. In that case, trying to make sure that you’re writing in the correct box beside the correct person is a real lottery.

If there’s one thing an election shouldn’t be, it’s a lottery.

It also includes forms, and these forms and directions and all the rest of it – they’re all just in ordinary print.

I can’t read that!

In fact, I have to get my Personal Assistant to go through all the forms, fill out any bits of information that need to be filled out, and she just puts an X where I need to sign – and I sign it. Also, she has to determine which is the correct envelope to put the correct bit of paper in. I’ve been given two here and… [shrugs] I don’t know what’s on them!

And then… I think this is the instructions, which, again, my Personal Assistant has to read out to me.

Given that it’s a referendum, obviously it’s quite straight-forward. There’s a “Yes” and a “No”, and I’m pretty sure the “Yes” will be on top and the “No” will be underneath. Nonetheless, the principle of me also being able to access a Braille and large print template, which is a frame that would fit over the ballot paper… I think it has all the text, but in much larger print, and it also has Braille. I’d be able to lay it on top of the ballot paper, read the Braille, then there would be a nicely, clearly marked tactile box. I’d be able to stick a pen into the correct box and make my mark.

I can’t do that under the current system, and therefore the government has not yet actually extended the private ballot to all the citizens of Ireland of legal voting age in every other respect – apart from disability.

That needs to change.

Remember to get out and vote, however and wherever you’re doing it.

The referendum on repealing the 8th Amendment of the Constitution of Ireland takes place on 25th May, 2018… unless, like me, you’ve already voted!

[* The case was won in the High Court]

[** I was thinking in terms of the Equality Act 2000, which has had a number of updates since. The link takes you to the Irish Human Rights and Equality Commission, the statutory body for protecting and advancing human rights and equality in Ireland]

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.

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.