UNCRPD in Ireland – begging for change

Bad TrumpThe last few months, I’ve read and watched more political news than I could stomach. As a result, shortcut rambling, and buzzwords on Twitter like ‘“tremendous,” “ban,” “wall” and “crooked” now linger in my own vocabulary when I sit down to write. Trying to wipe self-centered #TrumpSpeak from my mind seems futile, though, as each day brings more White House drama.

In contrast, Michelle Obama’s selfless message has always been, “Say something true,” rather than “What will make me sound smart, or witty, or powerful?” or “What does the audience want to hear?” Continue reading “UNCRPD in Ireland – begging for change”

Disability rights in Ireland, 3 years later

logoThe UNCRPD, the United Nations Convention on the Rights of Persons with Disabilities, is an international human rights treaty adopted by the United Nations General Assembly on 13th December 2006. It consists of a body of international experts that monitors implementation of the Convention by the States Parties. The UNCRPD provides the framework to promote, protect and ensure the rights of all people with disabilities and promotes equal rights in all areas of life. Continue reading “Disability rights in Ireland, 3 years later”

Disable Inequality

It’s been rather quiet down here. The past four to five months, I’ve been involved in disability rights campaigns and had a long much-needed Christmas and New Year’s break. I’m now back to passive campaigning in some form or another whilst having the flu… it’s never boring in MS-land.

With the Irish election campaign in full swing, it’s difficult combining high-powered fatigue issues and other MS symptoms with the amount of advocating I want to do. The first and second are, as most of you know, difficult to tackle, the latter not acted upon enough. I’m still dedicated to writing for my blog, though, and also for the Novartis and Irish MS Society blogs.

There is one thing I would like to highlight. In my belief, disability rights are something we all need to fight for because sooner or later, we will all be confronted with it. Quite often people portray to care about those with chronic illnesses and disabilities, yet they don’t. Either we are “not accountable in steering our country forward,” and therefore, are seen as “a burden on society.”

This has to end

By the time of my MS diagnosis 2.5 years after moving to Ireland, I already knew about the state of Irish health services after ending up with a knee injury, appendicitis and endometriosis. Clearly, the focus of the Irish government between 2002 and 2010 was solely directed at job creation, providing new housing and playing golf games with bank managers and celebrities. Continue reading “Disable Inequality”

The sorry state of neurology in Ireland: one year on

Last year I attended a meeting in Leinster House, the seat of the Irish government, organised by the Neurological Alliance of Ireland (NAI) to highlight the sad state of neurology in Ireland. What I heard and saw that day is still very much etched on my memory because of the impact it had (see blog post of 2013 here).

It was with great interest so that I attended the launch last week of the results of the 2014 national survey called ‘Living with a Neurological Condition in Ireland’ organised by the NAI in the Mansion House, Dublin.

Continue reading “The sorry state of neurology in Ireland: one year on”

UNCRPD – The Right on Participation in Political and Public Life

enablepageIt has been a great, uplifting two weeks. Busy, yes, but it was also about self-analysis and giving back.

If I remember well – as you know my memories have a short lifespan – it was all about life with MS. I finally received meds for trigeminal neuralgia, aka the ‘suicide disease’ last week. As trigeminal goes, it is one of the most painful conditions according to medical staff. Over the past three to four months, many a thought went into on finding ways of eradicating the pain. It went as far as referring to it as ‘trigeminal blah blah blah’ because I started hating the word and all it stood for.

Not often do I lose hope when I am in a lot of pain, and with a pain barrier that is finding itself higher and higher, I thought I had felt it all. Optic neuritis was the sole contender on my list of ‘the worst pains you can ever feel,’ until trigeminal hit me again after an absence of about a year. Nevertheless, I am on the way to being released of the pain, and I locked abusive terms towards it in my hidden Pandora’s Box inside my mind and I am once again finding hope and strength in different places. Continue reading “UNCRPD – The Right on Participation in Political and Public Life”

UNCRPD – Getting Ready to Ratify (2)

As mentioned last Friday, I went to a conference on the hopefully soon-to-be ratified UN Convention on the Rights of Persons with Disabilities (UNCRPD) and this Friday, I will attend a second conference about those very rights.

Before I received both invitations, I was unaware of the CRPD. My first thought was “Oh, I thought there were already human rights in place in Europe for people with disabilities?” There are, but not in Ireland. Since then, I have tried to learn about conventions and optional protocols. It’s testing when your brain is not only filled with MS scars, but also with cognitive issues. Trying to remember article 1 by the time I’ve arrived at article 2 is a challenge, but challenges don’t scare me. They spur me on. Continue reading “UNCRPD – Getting Ready to Ratify (2)”