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:

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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.