Ireland and Disability: A Reflection of 2016

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International Day of People with Disabilities: 3rd December

 

‘Disability is not a problem to be cured, but a part of our identity and diversity’ – (Dynah Haubert, a lawyer in the US)

 

Are things really improving for people with disabilities in Ireland?

I’ve been picking my brains for the last two weeks trying to decide how I would approach this blog. As you may have guessed from the heading, today (December 3) marks an occasion called the International Day of People with Disabilities. As with Cerebral Palsy Day (October 5), I’m not exactly sure what having a specific day to recognise people with disabilities is supposed to achieve. Then it occurred to me that perhaps it isn’t about individual people as much as it is about reflecting on how we as a society have embraced disability and difference as part of Irish culture.

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The Disable Inequality Campaign Poster

 

The year 2016 kicked off with the imminent General Election and the Disable Inequality Campaign. Activists across the country had the opportunity to meet with (interrogate) their local representatives and urge them to take the needs of people with disabilities into consideration. The ‘Disable Inequality’ Campaign itself was popular and created awareness of issues facing people in Ireland such as poverty (Newstalk reported on 27 September that 70% of people with disabilities struggle to make ends meet), lack of employment and the biggest thorn in our paw, the failure of the previous Government to ratify the United Nations Convention of the Rights of People with Disabilities (UNCRPD). Although everyone has human rights under the ‘normal’ UN Convention, the UNCRPD includes other things such as the right to choose your place of residence, the right to have a Personal Assistant and the right to be a full and active member of your community.

Indeed, the unnecessary institutionalisation of people with disabilities in Ireland continues to be problematic. The Health, Information and Quality Authority (HIQA) found that many residential services were not fit for purpose this year. On 11 November The Irish Times reported that a person staying in the psychiatric unit in Portlaoise was waiting twelve days for a shower. Children were staying in adult psychiatric wards, and one person commented ‘At least I’d get exercise in prison.’

According to independent.ie on 29 October, money was taken from HSE patients’ accounts without full clearance. The ‘mishandling’ of €136.3m of patients’ money and assets including bank accounts, pension books, property documents, investments and jewellery was attributed to staffing issues, which led to inconsistency when recording financial transactions. Well, dress it up however you please: this is theft of the assets of vulnerable people left in the care of greedy vultures.

2016 also saw the Paralympics in Rio, and our athletes brought home eleven medals in total (four gold, four silver & three bronze). Unfortunately Ailish Dunne (one of the Leaders with Offaly CIL) couldn’t compete owing to risks posed by the Zika virus. As with every Paralympics, it was great to see disability being portrayed as a positive thing, although there is still the misperception out there that if you have a disability, you are either an object of pity or ‘Superhuman’ (which so happens to be the name of a Channel 4 programme which explored this very issue).

The portrayal of disability in the media continues to be unbalanced. Some of it is positive. This year, the Blue Teapot Theatre Company in Galway (as seen on the award-winning documentary Somebody to Love) released the film Sanctuary, originally a play written by Christian O’Reilly which explores sexual identity in two characters with intellectual disabilities. The lead roles are played by Kieran Coppinger (Larry) and Charlene Kelly (Sophie), both who have their impairments in real life, and explores love and sexuality in an Ireland where it is illegal for people with intellectual disabilities to have sex (under the old Lunacy Act, which is now replaced by the Assisted Decision Making Act). This play/film has started a much-needed conversation around sexuality and challenges the perception of people with disabilities as being incapable of sexual desires. Most importantly, it highlights that sex is an important part of life, therefore breaking taboos.

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The poster for Me Before You, a film that suggests that life with a disability is not worth living

However, one of the biggest films at the box office, Me Before You, angered disability activists worldwide. These activists argued that the main character, Will, was portrayed as being the stereotypical angry crip, and was not given his own narrative voice. (I’ve read the book but felt that it would be betraying what I believed in if I were to go to see the film). As an armchair activist myself, I know that disability is mainly seen as a tragedy, something not to wished upon your worst enemy. This film/book did nothing to dispel this belief. Given the history of involuntary euthanasia during the Second World War (and plenty of other less reported cases too, I’m sure) I feel that it is somewhat dangerous to depict disability as being a fate worse than death.

Characters with disabilities in box-office films are often portrayed by non-disabled actors, as in Me Before You. However, there was particular disgust at a decision taken by fashion magazine Vogue in August 2016 to use ‘able-bodied’ models, photoshopped to look as though they had disabilities. Two Paralympians, Renato Leite and Paulo Vilhena, both of whom are amputees are said to be the inspiration behind the photoshoot and yet, their own photos were not used to promote the Paralympics. This sends out a negative message that disabled people themselves are neither desirable nor sexy.

 

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These models were photoshopped to look like they had impairments. (Source: thejournal.ie)

 

Public transport continues to be an issue of contention for people with disabilities in 2016. Owing to staffing issues, wheelchair users across the country are required to give twenty-four hours’ notice to their local stations if they intend to travel by train. On July 2, 2016, the Wicklow People reported that Garrett Jameson from Rathnew was denied access to a local Bus Eireann vehicle, an inaccessible bus stop cited as the reason.  On September 8, the Irish Independent reported that Ann-Marie Champ, a wheelchair user who travels from Dublin to Newbridge to work every day, was refused a ramp at Newbridge and was told by the driver that she would have to get off in Kildare. After this, Ann-Marie had to wait an hour for a taxi to arrive from Portlaoise. On November 19, blogger Louise Bruton, another wheelchair user who checks venues for accessibility and then blogs on her own blog, Legless in Dublin, found herself trapped on a train at Dublin Heuston when assistance to help her off the train failed to arrive. She commented to the Irish Independent: ‘When it comes to a lack of disabled facilities, I’m sick of hearing that it’s a lack of money. The ones with the power to change anything aren’t taking action.’ These, sadly, are not isolated incidents in 2016 Ireland, just some examples of the ones that people had to courage to report. A time has to come when we say: this is not good enough.

And of course, in 2016 we were forced to bid farewell to a man who many of us in the disability community would count as a close friend, Martin Naughton. Martin, who had lived experience of institutionalisation, was responsible for bringing the Independent Living Movement to Ireland. He used every opportunity possible to spread his important message: that people with disabilities in Ireland deserve choice. They deserve to have access to services that will enable them to live wherever they choose, to pursue educational and employment opportunities and to make their own mistakes. In an interview with RTE in July 2016, Martin simply said, ‘The solution is not institution.’

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Martin Naughton (Source: AT Network website)

Thankfully, newly appointed Minister for Disability Finian McGrath so far seems to be committed to Martin’s vision. On 20 June he announced an investment of €20m to enable people with disabilities who are currently living in institutions to move out into the community. This was hope to benefit 165 people living in 14 institutions, according to breakingnews.ie. McGrath said: ‘The Programme for Government wants a commitment to continue to move people with disabilities out of congregated settings and our objective is to reduce this figure by one-third by 2021 and ultimately to eliminate all congregated settings.’ However, the UNCRPD is still not ratified as was promised at the start of the year, so only time will tell whether McGrath can truly honour his promises.

So as you can see, 2016 has been an eventful year for people with disabilities in Ireland, but the real question is: are we really making any progress? Well, I can’t tell to be honest, but we are certainly becoming more vocal, and that can only be a good thing. It’s up to us as activists to vow to never stay silent, to always challenge injustice, to strive to live as equal members of our communities and society.

And that is what International Day of People with Disabilities is really about. The perusal of equality and fairness for all.

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A Tribute to Martin Naughton: Activist, Campaigner, Friend

I woke up with a start this morning, the darkness threatening to suffocate me. My sleepy brain told me that I had woken up in a world that was different than the one I opened my eyes to yesterday, which was the thirteenth of October, 2016.

Then I remembered. I felt my stomach close in on itself as the events of the last twenty-four hours rushed back to my memory: Martin Naughton, prominent disability advocate and all-round good guy, passed away yesterday aged sixty-two, following a short illness. There is nothing worse than hearing the news, via social media (so tacky), that someone who made such a huge impact on your life has died. At first I thought (hoped) it might have been a hoax, a rumour, but as the Independent and RTE published their stories, the reality of our loss hit home.

Everyone in the disability world knows Martin. He’s our representative, our ‘go-to’ guy. If the Independent Living Movement was a mafia, he’d be our Don; he was always trying to think of new and seemingly radical ways of equalising the playing field for people with disabilities. (such as giving us full control over our lives in the form of Direct Payments – I know, outlandish, right?!)

Martin had an impairment called Spinal Muscular Atrophy, and spent his childhood in St. Mary’s Hospital in Baldoyle, where he developed a strong stance against the institutionalisation of people with disabilities.  He became a youth leader and coach there, and became a strong advocate for people with disabilities. When he went travelling in the US, he saw the disability movement in action first-hand and on his return to Ireland, immediately set about bringing Personal Assistance here. This began with ‘Operation Get Out,’ a programme designed to move people who had been institutionalised back out into the community and culminated in the development of Ireland’s first Center for Independent Living in Dublin.  There are now around 25 CILs across Ireland today, thanks to Martin.

Martin dedicated his entire life to trying to achieve equality for people with disabilities, but the first I ever heard of him was in 2005, when I was looking for a summer job in Dublin. My Personal Assistant arranged for me to have a job interview with him in Chief O’Neill’s in Smithfield. She didn’t know much about him, so I’d pictured a stern-looking man in a suit, wielding a pen and ticking boxes as I spoke. As it turned out, I didn’t do a lot of talking during that interview, but I’ll never forget it. Martin’s kind, soft features put me at ease as he spoke passionately about the need for Leaders (people with disabilities) to take full control of their own lives and to have a platform from where they could voice their concern about their Personal Assistant Services. This platform was called a Leader Forum and it was my job to help him put it together. This experience later enabled me to help establish forums in Laois and Offaly. I could see that this was a man with a rare combination of passion, vision, and stubbornness. He would not rest until he realised his goals.

That September, Martin would lead the biannual Strasbourg Freedom Drive for the second time, and although I couldn’t go, it awakened in me an awareness that issues facing people with disabilities in Ireland are commonplace across Europe. During this Freedom Drive, people with disabilities across Europe convened at the European Parliament with key demands, which invariably included the deinstitutionalisation of people with disabilities and the recognition of the Personal Assistant Service as a basic human right. The slogan for the event was ‘Nothing About Us Without Us.’

I started working with Offaly Centre for Independent Living Ltd in 2008, and thanks to Martin, I had a clear idea of what I wanted to achieve. However, I soon discovered that it wasn’t as easy to motivate others to fight for equal rights. During the recession (that we’ve apparently come out of), a time when ‘cutbacks’ instilled more fear in people with disabilities than any other word, Martin was actively protesting against these cutbacks. He and other activists took the drastic measure of camping outside Leinster House, and their perseverance was worth it when the cuts were reversed.  Just last year, in September 2015, he organised another three day protest outside the Dail where he expressed his disappointment to our Taoiseach, Enda Kenny, on hearing that investments were going to be made into residential institutions.

Martin is a celebrity, and we all loved to see him coming to Offaly. In 2010 he agreed to be filmed as part of a promotional DVD Paddy Slattery and myself made for Offaly CIL Ltd, called ‘My Life with Me in It,’ in which he explained how he established the Independent Living Movement and how he helped Michael Nestor establish Offaly CIL. In October 2011, when prominent US advocate Judy Heumann came to visit us in Offaly, Martin came to meet her, noting the many similarities in the struggles for independent living for people in the US and in Ireland. That day, he introduced me to Judy as a hard-working Trinity Graduate who was passionate about forwarding the Independent Living Movement. It was the highlight of my seven years’ service with Offaly CIL. Despite the fact Martin met so many people every day, he had still taken the time to get to know me as a person and believe in me as a person. I’m crying just remembering that moment!

And in spite of his many achievements, Martin always strove to achieve more. The Offaly Leader Forum (now the Laois/Offaly Leader Forum) organised a celebratory event in September 2015 to mark twenty years of Independent Living in Offaly. While other speakers were maudlin about the past, Martin focused instead on the future, warning us that must never become complacent in our pursuit of equality. Before his passing, he was actively campaigning for the introduction of Direct Payments, insisting that we must believe in our ability to take control of our lives and to achieve our potential in everything we do.

Nobody could accuse Martin of not achieving his potential. And now that he has passed from this world, we have to ensure that his legacy lives on, never for a moment doubting that we deserve anything less than to live with dignity, respect and choice in our own communities.

Codladh go sámh, a chara. You will be missed, but never forgotten. Thanks for everything xx