Equality for all

It’s the night before the Marriage Referendum. I’ve read articles and stories from both sides and I’m ready, as the slogan urges us, to vote Yes for equality. But being who I am, I can’t turn off my thoughts about the word ‘equality’ and what it means in 2015. And here’s why.

I know that I use this blog to prattle on and on about the importance of disability rights. I am aware of how one-dimensional some of my posts may seem to those of you who know that I am more than my disability and am proud to know Sarah (this isn’t directed at any dads in particular by the way). But here’s the thing: despite being periodically frustrated by my limitations, I have embraced who I am. I know that I try to be understanding, accepting and tolerant of all others, simply because that’s how I expect to be treated, even though it is not always the case. I laugh off the insults, the condescension, the ignorance because at the end of the day, it shouldn’t really matter what people think of me. I am who I am, regardless of the labels people throw at me.

Over the last few months I have listened, watched and read arguments in favour of, and opposing same-sex marriage. You haven’t been able to avoid it unless you live under a rock; it was even on the front page of the Tullamore Tribune this week. Politicians, celebrities and ordinary citizens talking about which way they are voting in the Same-sex marriage referendum. People sharing their experiences of what it’s like to be gay in twenty-first century Ireland. It’s amazing how this referendum has forced people to face such a taboo subject head-on. To examine what it means for people living in shame of who they are. To explore people’s anxieties and deconstruct their misconceptions. To hear both sides argue their cases so passionately.

Ireland has progressed so much, people say. But allowing same-sex marriage won’t stop homophobia or hate crime. And although so much has been done to ensure that Ireland is becoming a more accepting and understanding society, I have to admit I still don’t feel it.

In the last two weeks two separate incidents involving people with disabilities made the headlines. The first was a man who was left on a train when the ramp was not provided to let him off the train. He was let off twenty minutes later, and he commented that never before had his disability made him feel so vulnerable. The second one was a woman who was denied access to a Dublin Bus because a buggy was occupying the wheelchair area. One wheelchair space for fifty-odd seats seems a bit discriminatory anyway. These are not isolated incidents, as I know only too well from working in the disability sector; everyone has a story to tell about public transport in Ireland.

How can Ireland be viewed as being progressive if there are still people in society who cannot even access basic services such as transport? Why are we still highlighting the same issues over and over again?

I thought I was being paranoid, so I decided to do some actual research. According to a report by the National Disability Authority in 2011 on attitudes towards people with disabilities, the number of people who believed that ‘it is society that disables people’ fell from 62% strongly agreeing and agreeing in 2006 to 57% in 2011. Not a significant drop, but a drop nonetheless. Furthermore, there was a decrease in the number of people who think that people with disabilities should be treated more favourably in certain circumstances (i.e. when their disabilities prevent them from doing things that a person without a disability could do) from 80% in 2006 to 68% in 2011.

It occurs to me as I read these statistics that the changes in the attitudes of those who partook in the study may be due to the onset of the recession. Since 2008, funding that was once earmarked for disability services has been restricted and the needs of people with disabilities have had to be prioritised. Every year disability organisations make pre-budget submissions, outlining how further cuts will have devastating consequences for their clients. When you have a disability, you become costly; a report launched by Inclusion Ireland in September 2014 estimates that the extra cost of disability is roughly €207 per week. That’s not even provided through our (means-tested) disability allowance. And because of this people with disabilities are more likely to live in poverty; many are caught in a welfare trap, afraid to move into employment in case they lose their secondary benefits such as medical cards and travel passes, and consequently they are either seen as spongers or dependent on the state.

How is this equality?

Tomorrow’s same-sex marriage referendum will come and go, and whatever the outcome, one thing is for certain: this referendum has given so many people a platform on which to relate their personal experiences, voice their opinions, and persuade the people around them of the merits and disadvantages of same-sex marriage. Giving the Irish people the opportunity to vote for same-sex marriage empowers the people and puts the potential of equality for same-sex couples in their hands.

Imagine, this time tomorrow, the right to marry your partner regardless of gender could be a reality.

Maybe, one day, equality for people with disabilities could be a given, too. But in order to achieve this, we need to be more vocal, more visible. We need to make sure that our voices are always heard. Not just around election time but every single day. Only when true equality exists should we fall silent.

PS Yes Equality!

Safety in an unsafe world

Today, the sad news broke that 24 year old Karen Buckley was found dead after a three day search. At the time of writing this blog, a man has been arrested for her murder. Karen’s disappearance and subsequent death has saddened everybody: people who are in their twenties who know only too well that they are not immune from her fate; parents who worry about their children who have left the nest and are living in all corners of the world; parents of younger children such as myself despair at how we have brought our children into a world that is so dangerous that we become suspicious of our neighbours and sometimes even those we love.

I was talking to my aunt about this degeneration of modern society, how the world has somehow descended into utter chaos, a world where nobody bats an eyelid at reading about murders, rape, kidnapping, muggings. ‘I find it very sad and disheartening that Ali is growing up in such a horrible world where people don’t give a crap about who they hurt. Drugs and violence everywhere. Things are so much different nowadays.’ My aunt, having one or two more years’ life experience behind her than I do, smiled and said, ‘We have seen the atrocities of Northern Ireland, the muggings and the drug wars have raged on for decades. The only difference is that you now have a child. And when you have a child, the world seems to be a much scarier place, because you suddenly have to protect your child from it.’ These words came to mind as I read the news this morning.

Twenty-four is so young. I try and cast my mind back to what I was like in my twenties. I remember with more than a pang of guilt how I arrogantly screened my mum’s calls because we had fallen out over something trivial, and I didn’t care if she was worried. As a mum now, I’ve no doubt that she was sick with worry. What if something had happened to you? she’d said angrily, her face white from sleepless nights. ‘But nothing did, I’m fine, would you calm the fuck down’ was how I responded to her ‘ridiculous outbursts’. Yeah, I’m really not nice when someone tells me what to do.

As a college student, I went out on the town at every opportunity. I remember being in Blackpool and singing the Irish national anthem at the top of my lungs outside the most British pub I could find (I strongly believe my speech impairment saved my life that night. Incidentally – true story- a man was seriously injured in a fight a couple of yards from the pub, a few hours later. We were so lucky. And so stupid). I remember going to Mojos in Mullingar with a friend and walking/getting a lift on her knee through Mullingar while blind drunk, wading through the throngs leaving the nightclubs. Both of us were probably wearing short skirts at the time. And yet, if we had been attacked, would we have been blamed because we were in short skirts? Or because we had disabilities? Would it have been our fault?

My dad follows this blog (often he’s the only one to leave comments here – hi dad *waves*) and he is probably furious at me for being so reckless and irresponsible. It’s a wonder how he gets any sleep. I’ve tucked my baby up in bed and although I will get up a few times during the night to check her (as you do), I’m reasonably confident she will be okay and not wander off anywhere. When she was younger, we baby-proofed the house, and we put everything sharp/dangerous out of reach and hid washing and dishwasher tablets. Now she is more independent, making friends and slowly moving away from the protective bubble wrap I envelop her in. I have to trust when I leave her with others, such as friends and family, that she will be safe. And I’ve always found that so difficult, but that’s more my problem than anyone else’s. It’s hard sometimes to believe that I’m the same person as that twenty-four year old I described above. How I’ve become so cynical, so untrusting, so guarded in everything I say and do (except for this blog of course).

I would like to end this blog entry with this thought. Karen Buckley (who I don’t know and have never met) did not ask for her fate, and neither did anybody else who may have experienced a similar fate. People, young and old, make mistakes, act foolishly, do things that they regret, but nobody deserves to be murdered or hurt for making these mistakes. There will probably never be a world where there will be no need to tell our children ‘Don’t trust strangers. Don’t walk alone or you will get hurt. Always tell somebody about your whereabouts.’ Whatever happened to Karen was not her fault, and we must remember that. Only by exonerating the victim of any responsibility can we ensure that we create a safer world for others, and especially our children.

Is Ireland Ready to Address the Issue of Assisted Suicide?

** This is a trigger warning. Please do not  read if you are triggered by the subject of Assisted Suicide **

 

Brittany Maynard from California was diagnosed with a Stage Four inoperable brain tumour in January 2014. Faced with the prospect of losing all cognitive function, Maynard moved from California to Oregon to avail of assisted suicide laws. Her death was announced on 2 November, mere hours after she announced that she had decided to postpone the original date 1 November. A fervent campaigner for the ‘Dying With Dignity’ movement in the US, Maynard’s death has once again forced us to examine the stance of assisted suicide in Ireland: is it ever acceptable to end your own life, or to ask a loved one to assist you in doing so?

The Oxford English Dictionary defines assisted suicide as ‘the suicide of a patient suffering from an incurable disease, effected by the taking of lethal drugs provided by a doctor for this purpose.’ Policymakers in the UK are on the verge of passing a law (the Assisted Dying Bill) that would allow those who assist a loved ones’ suicide to be granted immunity from prosecution. In Ireland, however, assisted suicide is still illegal under the Criminal Law Suicide Act. Although the act decriminalised suicide in 1993, abetting a suicide carries a punishment of approximately fourteen years in prison.

This controversial topic was explored in 2013 when the Supreme Court denied Marie Fleming, whose MS caused her constant pain and suffering, the right to end her life with the help of her partner Tom Curran. Fleming had argued that not being able to enlist help in taking her own life was in breach of her human rights, but according to the ruling, the Constitution acknowledges the right to life, but not the right to die. Also, had Tom Curran assisted his partner in committing suicide, he would not be immune from prosecution. Although Fleming died peacefully in her sleep on 21 December 2013, this was coincidental; it was still not the death of her choosing.

Fleming’s high-profile case forced Ireland to confront the prospect of assisted suicide, a subject which has gained much media attention in both the UK and Ireland in the last two years. On 17 October 2014, veteran presenter Gay Byrne, speaking about the proposed UK Assisted Dying Bill to Stephen Nolan on BBC Ulster, said: ‘My dread would be that I would lie a long time in awful pain and disability. I’d rather it happened very, very quickly’. Byrne is not the first Irish celebrity to openly share his views on the subject of assisted suicide; in 2013, Derek Mooney stated that he wants to take his own life if his health deteriorates in old age, and because he is afraid of loneliness.

The attention given by the Irish media to assisted suicide has been intensified by plans to legalise it in the UK. In May 2014, British chat show hosts Richard Madeley and Judy Finnegan revealed that they have made plans to assist each other’s suicide should the need arise. On 13 May 2014, Madeley told The Guardian ‘If Judy was ill and in illogical pain, I wouldn’t give a tuppenny if there was a risk of being prosecuted. I’d do what was right for my wife.’

This exact scenario was played out in Coronation Street last year, when the character of Hayley Cropper had a brain tumour, which failed to respond to chemo. She decided that she wanted to end her life on her own terms, much to the bewilderment of her husband Roy, who adored her. It was this love that enabled him to assist Hayley in her dying wish, even though Roy consequently suffered from anguish and despair long after her death. While Hayley was passionate about the right to die, Roy was insistent that his wife’s life should end naturally, which is representative of how emotive the subject of assisted suicide can be.

Furthermore, the history and circumstances surrounding assisted suicide means that the issue is complicated and will always be surrounded in controversy. Mooney’s reasons for contemplating assisted suicide are potentially damaging to the psyche of our society. Many of us have had to watch an elderly relative or friend suffer from dementia or Alzheimer’s and die a painful death. Often, it may seem like the kinder option to ‘put them out of their misery’.

However, it is difficult to forget that, less than a century ago, the Nazi regime ordered the involuntary euthanasia of thousands of children and later adults with disabilities across Europe during the Second World War. Those against the ‘right to die’ movement, which often include disability activists and supporters of rights for the elderly, worry that promoting the right to die will shift the focus from the provision of proper support services and palliative care, and start a descent down a ‘slippery slope’ that could be difficult to come back from. Dutch ethicist and former euthanasia supporter Theo Boer argues that ‘euthanasia is on the way to becoming a “default” way of dying for cancer patients’ and observes that doctors may come under pressure to grant access to lethal drugs on the basis of being ‘aged, lonely or bereaved’.

Assisted suicide has been legalised in five countries in the EU, including Switzerland, Belgium, Germany, Albania and Japan. Dignitas, an organisation based in Switzerland, performs voluntary euthanasia procedures, namely in the form of a lethal overdose, which induces a coma and, subsequently, death. Eight people have travelled from Ireland since 1998 to end their lives, one of which was in January 2014. Dignitas has been nicknamed a ‘suicide tourism destination’ by the media, and it is argued by many ‘right to die’ supporters that having to go abroad in order to avail of these services renders them inaccessible for those who are too far along in their illness to travel, or who simply cannot afford to do so.

It is interesting to note, however, that 70% of people who visit Dignitas clinics for an initial consultation never return to their clinics, which suggests that once faced with the reality of death, many people either change their minds or take their own lives. For many, it seems that the right to choose how and when they die may be more important than the ending of life itself.

Whether it is perceived as a religious, human rights or a medical issue, it is clear that the introduction of assisted suicide in Ireland is currently being explored, and it is an issue that will not magically disappear. Should this law ever be enacted, it is the responsibility of our lawmakers to ensure that safeguards are in place to prevent abuse. However, before we do this, we need to take it upon ourselves to ensure that our medical and community services are equipped to meet the needs of our elderly, disabled and ill citizens, so that assisted suicide can be offered in addition to, and not instead of, a comfortable quality of life.

Talkin’ bout a revolution (again)

Election time has arrived again, and the atmosphere is almost electric. Posters on every pole, letterboxes crammed with manifestos, Facebook (and Twitter, I assume) home to pre-election scandal, the most recent being a van used for a candidate’s campaign parked illegally in an accessible parking space. This move caused outrage across social media sites this morning. Being a poet at heart, I saw this a metaphor for how far people with disabilities have yet to go in their quest for equality in Irish society.

Over the last five years, my profession has allowed me to explore and learn about the Independent Living Movement. I’ve studied the history of people with disabilities prior to the Movement and was physically sick after reading about the T4 Project which took place under Hitler’s reign during the Second World War. For those of you who are unfamiliar with this concept, I am talking about a scheme that Hitler himself devised where people with ‘incurable’ disabilities were institutionalised and later gassed or injected with a lethal substance (a ‘mercy death’).

The Independent Living Movement came almost twenty years later, coinciding with other human rights movements. I can imagine the excitement in the air as Ed Roberts, a young man and polio survivor, enlisted the assistance of an ‘attendant’ which enabled him to live away from home and attend university. He and a group of fellow ‘disabled students’ formed a group called the ‘Rolling Quads’ and they established the first Center for Independent Living in 1972. At this stage, the concept of somebody with a disability having control over the fundamental aspects of their everyday lives, such as deciding what time to get up in the morning, where to go, whether to work or pursue leisure activities was a foreign one.

And despite the Independent Living Movement arriving in Ireland in 1992, the physical and emotional freedom of people with disabilities is still in question.

We have to ask ourselves why, twenty-two years since the Personal Assistant Service was made available in Ireland, people in this country are forced to live in residential institutions and hospitals; why people who need the assistance to live independently live in fear of vital services being taking away; and how we got to a point where we say nothing in response to all the cutbacks in recent years in case we ‘rock the boat’, even though many people remain on a sinking ship, waiting to be rescued by a Government who caused us to sink in the first place.

It seems that Government is only interested in helping people with disabilities when times are good. Despite all the studies that have been conducted on the viability of the Personal Assistant Service, people are still living in institutions and hospitals, where they exercise little choice over their everyday routine. Having a disability is an expensive way of life, and yet medical cards are being revoked, housing grants are being refused and household allowances are almost non-existent. These cuts inhibit people with disabilities from participating fully in Irish society and ironically from contributing to society rather than sponging off the State.

So until we stand united and say ‘enough is enough – we want equality and guaranteed access to the services that will enable us to achieve it’, we as people with disabilities will always be vulnerable, passive recipients of services that are reliant on state funding. We need to ensure that in the future, we regain choice and control over our lives. The time for talking is now over; we need to speak louder with our actions.

Yet again.