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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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About Isolde

Writer, Artist and Story Archaeologist living in Co. Leitrim, in the rural West of Ireland. My personal blog, AccessAdventures, features random rantings about the daily entertainment that is being a visually impaired (blind) wheelchair user (cripple). My professional blog, StoryArchaeology, is with my colleague, Chris Thompson, uncovering the layers of Irish Mythology in podcasts and accompanying articles. My arts practice is currently featured on isoldecarmodyarts.youtube.com - maybe a blog here will follow... I am preparing "A Real Irish Woman's Book of Days" (realirishwomen.wordpress.com) to go live for 2016.

Grace us with the splendour of your uninformed "reckon"...

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