I hate to be a burden, but…

Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.


Birds of a Feather


“Men make their own history, but they do not make it just as they please; they do not make it under circumstances chosen by themselves, but under circumstances directly encountered, given and transmitted by the past. The traditions of all the dead generations weigh like a nightmare on the brain of the living”.

Karl Marx (1979)



I carry the weight of a dark and cruel history on my bony little shoulders.

Every day, I fight a small battle in some shape or form. Sometimes it’s because somebody has skipped ahead of me in the queue in the shop. Sometimes it’s a waitress asking my husband what I would like for dinner. Sometimes it’s the need to feel that people take you seriously as an activist.

It’s all too easy to forget that I’m not the only one who’s perceived as different, that I’m not the only one fighting for equality in a society that indirectly labels me as inconvenient. If you think I’m being dramatic, just look at the recent coverage of Johanne Powell’s story (Johanne Powell is a mother and carer to her severely impaired daughter, Siobhan). I’m not disputing Johanne’s right to her story, but surely Siobhan, and so many in her position, should be given the chance to somehow tell their story too?

Every time I hear a story, be it about a wheelchair user who couldn’t board a train, or a person living in an institution simply because their home isn’t adapted, I feel an inexplicable anger, and also a sense of being victimised. I always think to myself: what if that had been me? It’s only luck that it isn’t me. And what can I do about it?

I often think about my upbringing and how often my parents used the word ‘fight’, ‘It was a long fight but Sarah made it into primary school.’ ‘It was a fight but we got Sarah botox treatment’ (for my legs, not my face – this is all natural). For many parents, and subsequently children, everything is a fight in a world where cutbacks are the norm. Sadly, parents still have to fight to have their disabled (by society) children accepted into mainstream school. Fight for the supports their children need to excel. And I ask myself – what exactly has changed in fifty years?

Sure, some things are improving – for example, Tullamore is becoming more accessible, students with disabilities are now going onto third level education and employment, sometimes setting up their own businesses, having families of their own and so on. But none of this falls into our laps. It is hard work having to constantly prove yourself in a society that expects little of you. And, *apols for harping on about this,* the fact that the United Nations Convention of People with Disabilities has not yet been ratified nearly ten years after it was signed is a clear indication of how (un)seriously our government views the needs of people with disabilities.

As far as I can see, we have internalised our history – please correct me if I’m wrong, but –

  • The word ‘handicap’ derived from the term ‘hand in cap’ is deemed offensive now, but is technically still correct as every year thousands of people with disabilities live in fear of losing their Personal Assistants, losing benefits and medical cards. As long as I worked in the disability sector, the Disability Federation of Ireland and the Centre for Independent Living made pre-budget submissions (elaborate begging letters) outlining the damage further cuts would cause. Obviously government didn’t care;
  • Despite one damning HIQA report after another, residential homes are still alive and well. Minister Mc Grath reckons that they will all be closed by 2020, but according to a HSE report published in 2011, more people are entering residential home than leaving them;
  • I’m a young’un, but I could safely bet that many disability activists were campaigning and protesting for the exact same reasons twenty years ago as we are now;
  • Disability/impairment is still viewed as one of the worst things to happen to you (cheers for that, Me Before You). it’s a tragedy that you wouldn’t wish on your worst enemy, and wouldn’t it be great if there was a cure, and have you heard of these robotic legs blah blah blah. It seems that cures are more favourable than respect, understanding and acceptance. What does that say about us?

I know that I am the sole author of this blog, but I’m not sure I’d have the confidence to blog at all were it not for the support of all my readers, especially those who have experienced discrimination as I have. So the next time you are raising a grievance, be it because you were excluded from a building or public transport, or because some prat doesn’t think you should be a parent, or because you’re being blocked from getting your dream job, you have a responsibility to keep fighting.

But don’t worry.

You are not alone.

You have all of us behind you.

Ireland and Disability: A Reflection of 2016


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.

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.

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.

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.’

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.

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

International Cerebral Palsy Day – 5th October

It came to my attention earlier, as I was devising a work plan from now until Christmas, that the third International Cerebral Palsy Day will be marked tomorrow on 5th October. And as a CP’er myself, I felt compelled to write a blog about it. (Also, I haven’t blogged in a reeeeeeeeeeally long time. Sorry about that. Writing a novel isn’t as easy as I thought it would be and sucks up a lot of my time these days).

For the uninitiated, Cerebral Palsy is a disability which is caused by damage to the brain before, during or after birth. The condition itself can range from mild to severe, depending on the damage sustained and the part of the brain affected. Cerebral Palsy is a non-progressive impairment and cannot be cured, although medication and speech- and physiotherapy can enable the person to have a better quality of life (apparently, when they remember to do it).

I’m not going to lie to you, though – me being the politically correct little shit that I am, there’s something about an International Awareness Day for CP that makes me uncomfortable. It could be partly related to my reluctance to admit that CP does bring with it annoying limitations such as fatigue, muscle pain and blah blah blah, when I would rather be perceived as being invincible, capable of absolutely everything. It also has something to do with the fact that for the last seven years, I’ve been programmed to believe that disability is constructed by an inaccessible and exclusive society, not one’s individual impairments. So, in other words, your impairment doesn’t matter, but your motivation to challenge injustice does. That’s something I firmly believe.

Another myth I need to shatter is that disability is something that can be overcome. No, it bloody well can’t, okay? I’m not going to wake up in the morning, or go on a pilgrimage to Lourdes and be miraculously cured, and you know why? Cerebral Palsy is not a disease, it’s not contagious. What needs to be ‘overcome’ is society’s obsession with cures, with an almost unnatural desire to eradicate disability/impairment through medical science and technology. We seem to forget that Hitler also had ideas on how to create a disability –free society, which resulted in the ‘mercy killing’ of an estimated 700,000 people with disabilities.

On a positive note, however, some things have improved slightly for people with Cerebral Palsy. If you’ve ever read Christy Brown’s My Left Foot you’ll note how the language the author uses is very much of a certain era; Brown indiscriminately uses words such as ‘handicap’ and ‘cripple’ to define himself, words which are deemed offensive nowadays. Also, during Brown’s darker moments, it is easy to see how his thinking is directly influenced by a society that sees him as problematic, different, and how to a certain extent he’s internalised the negativity of those around him. Nowadays, children with Cerebral Palsy are well educated, are often integrated into mainstream education, and some of us even get the chance to bullshit our way through university (see ‘Why Getting An English Degree Was So Terribly Important’). We have families of our own, we drive, we hold down jobs (albeit with difficulty at times; it can take a person who has CP three to five times the amount of energy to do a simple task that a non-CPer does).

Having said that, I hate the slogan ‘I may have Cerebral Palsy, but it doesn’t define me,’ because that’s balderdash. Of course it does. It makes every achievement more special, be that getting a Masters Degree or buttoning your blouse by yourself. The reality is that many of us CPers work harder than most to gain the same results as someone without CP. My Leaving Cert nearly killed me, and that’s  no exaggeration. I spent two years in constant pain after having my daughter from lifting her and getting up and down off the floor. And if time was wound back, I’d do the same again, but there’s no denying that the extra demands I put on my body took its toll. Furthermore, if I’m honest with myself, that’s why I stepped back from a traditional job in favour of writing: at least this way, I can work to my own schedule and rest when I need to. (Not to say that I don’t intend on going back to work, but I’d be lying if I said I didn’t enjoy the freedom to work as I do now. Ironically, though, I’m working more than fifteen hours a week on my writing now, and I’m not as tired as I used to be. Funny that).

Oh, and I’m also obliged to tell you that as International CP Day is a ‘thing’ now, presents are customary. Don’t worry, it needn’t be anything major. Twenty euro in a card or a box of Milk Tray will do just fine.


In Memory of an Inspirational Hero


I absolutely despise the use of the word ‘hero’ when describing a person with a disability.

I find the term irritatingly patronising and often inaccurate. British Comedian Laurence Clark is making a living by challenging the notion of the ‘inspirational disabled person’, reminding people through his routine that we (people with disabilities) do not need to be congratulated by strangers for achieving the everyday things that other people do on a daily basis, such as going to college, getting married and having kids. In fact, he is so passionate in his refusal to be labelled an inspiration that he named his 2012 stand-up tour ‘Inspired’ and voiced his desire to be recognised as a ‘normal’ person who does normal things.

As a person with Cerebral Palsy myself, I can appreciate how annoying it is when people  have low expectations of you as a disabled person, but I must confess that even I have my heroes. And this particular man, who has been dead twenty-one years yesterday (14 March), has made such a lasting impression on me, even though I’ve never met him, and obviously never will.

His name? Ed Roberts.

I wasn’t going to write this blog because I didn’t want people to think I was dull or lame, but I’ve read back my previous blogs and I think we’ll all agree that that ship has sailed. Ed Roberts was known as the ‘father of the Independent Living Movement’, and it is down to his collaboration with other activists during the 1960s and 1970s that many of us enjoy a Personal Assistant Service today.

When I used to spend days researching the history of the Independent Living Movement, what struck me was the lack of progress for people with disabilities prior to the 1960s.  Just twenty years beforehand, people with disabilities were being murdered en masse by the Nazi regime (it is estimated that 700,000 disabled people were murdered during World War II). The 1960s, however, was a ‘radical’ period of social change, when people in America started to speak out against injustice, and marked the start of women and ‘black’ people as they were known starting to take radical steps to achieve equality.

Ed contracted polio  in 1953, at the age of fourteen. He never recovered, and was essentially paralysed and left dependent on an iron lung. As time went by, he could spend time out of the lung using a technique known as ‘frog breathing’.

 Given the culture of the time, Ed was deeply ashamed of his newly acquired disability and stayed at home, completing some of his high-school education over  the telephone. His mother eventually forced him to go back to school for a few hours a week, and Ed learned that being different was not necessarily a bad thing. He began to see himself as a ‘star’ and wondered how he could use this to his advantage.

Like many people with disabilities, even today, Ed and his mother Zona had to fight so that Ed could complete his high school diploma. The school initially refused to award Ed his diploma because he couldn’t get his driving licence or do PE. This decision was overturned after much protest from Ed and Zona. Ed then decided that he wanted to study at the University of California in Berkeley, and was famously told, ‘We’ve tried cripples before and it didn’t work.’ Eventually he was granted campus accommodation, a small wing of the university hospital, the only place that Ed could put his iron lung. Ed agreed on the condition that the space was treated as a dorm, not a hospital.

Ed’s admission into the University paved the way for other people with disabilities to stay on campus too. They formed a group, dubbing themselves ‘The Rolling Quads’ and started enlisting the help of ‘attendants’ (now known as Personal Assistants) who they recruited, trained and fired themselves. This was a radical concept – disabled people directing their own services. Ed referred to it as ‘cripple power’, and the idea of the person with the disability directing services remains central to the Independent Living Philosophy. Ed helped to open the first Center for Independent Living in Berkeley in 1972.

As you can tell, I’m fascinated by the Ed Roberts story, and always have been. He was one of the pioneers of a service that I, and so many others, enjoy today. Yet in spite of positive progress in Ireland, namely the opening of Dublin CIL in 1992, many people with disabilities in Ireland still live in fear of their Personal Assistant Hours being cut. Many are institutionalised in their own  homes, having a service only to help them up out of bed and put them back into it. Ever since the recession hit Ireland, the concept of empowerment has disappeared and instead we are left to prove, time and time again, that our PA services allows us to live, not just merely exist.

And for me, that’s why I will always try to honour the memory of Ed Roberts – not because he was some absolutely godly man who is my inspiration, but because he was an ordinary man who was prepared to fight for the ordinary things that sadly, many people with disabilities still can’t afford to take for granted – PA Services, education, employment. The only way to achieve true equality is to come together and shout loud to make ourselves heard. We must be Ed’s legacy so that our children can be ours.

To me, Ed isn’t just inspirational. He is so, so much more than that, and deserves to be remembered as more than that. He and his colleagues gave us the opportunity to pursue our dreams, live in our own homes and have our own families. Above all, he taught us never to accept the status quo, as equality will never be achieved through complacency.

Budget 2016: What money can’t buy.

In less than 24 hours, we as a nation will be picking at the bones of Budget 2016, due to be announced today. I’m sure as always spending increases and cuts will be debated all over the internet. It’s depressing to think of the citizens of this country glued to the TV and Radio, waiting to hear if the Government is going to be generous this year after seven years of cutbacks that have left many families struggling to pay their bills. But as we all know, election time is coming, so I’ve no doubt that serious attempts will be made to dupe the masses into thinking that this  government really cares about the average Joe. I doubt it. Many of us are still struggling to keep our head above water, and the homeless crisis is starting to spiral out of control. And for people with disabilities- well – many of us seem to be stuck in some sort of twisted time warp.

In recent months, there has been some much-deserved focus on the problem of people with disabilities being stuck in outdated institutions, where they are mere recipients of basic care. Many of these people are cut off from their local communities, and have little choice over their everyday lives. Every new HIQA scandal is a reminder that the current model of service provision isn’t working. About 8,000 people, 1,000 of which are under twenty-seven, are now living in residential institutions. I cannot imagine having spent my twenties in a hospital-like setting. I spent my twenties partying my way through college, getting work experience and going on holidays abroad. I chose to get married and have a child.  I live in my own home. As a thirty-one year old woman, I am doing well for myself. As a thirty-one year old woman with a disability, I am living a dream that some of my peers cannot yet access. And it’s not right.

A few weeks ago a man who I have known and respected for ten years, veteran disability activist Martin Naughton, staged a three-day protest outside the Dail and was joined by many colleagues and friends. He urged for this government not to spend €450 million on maintaining and building new residential institutions for people with disabilities and instead  to allow access to individualised payments that would enable us to choose the services we need to live equally and independently. Predictably, the protest ended on a disappointing note, with no concrete commitments made to improving service provision for people with disabilities. According to the group of protestors named the People with Disabilities group, more than 68% of service users are currently dissatisfied with services provided to them. They claim this is because the people who use these services are chiefly recipients of them and do not direct them themselves.

Let me ask you a question – who is more knowledgeable on what I need, me, or a team of medical experts who have had their noses in books for the last six years? Each and every person with a disability knows what they need, and what they don’t need. Every day government money is being wasted on organisations and institutions who claim to know what’s best for us. When you have the privilege of working in the disability sector for over ten years, you see first hand the effects of the cutbacks that were made during the recession. I’ve seen high dependency clients’ hours being cut to the bare minimum, often to take them out of bed in the morning and put them back in the evening. I’ve seen people having to fundraise in order  to have their houses adapted after acquiring disability because the Housing Adaptation Grant is no longer available. I’ve read stories where people are forced to choose between heating and food. Medical Card revocation, stopping the mobility allowance… I could go on and on.

I followed the response to Martin Naughton’s protest on social media and online papers, and of all the comments left on thejournal.ie, Suzy Byrne managed to clearly articulate the crux of the matter. She wrote: ‘We don’t need celebrities patting us on the head – all they usually do is turn up to rattle buckets for us and get pictures in paper. Same with most politicians – this is the problem – disability is not seen as a human rights issue but one of charity. And too many able bodied people benefit from this in terms of jobs and wages and status in society.’ Every year, after the pre-budget submissions and the announcement of the budget itself, there is silence. The media’s focus on people with disabilities tends to involve the words ‘triumph over adversity’ or ‘inspirational’ or ‘vulnerable.’ These articles tend to also use words ‘brave’, ‘courageous’ and ‘heroic’. There is nothing heroic about having a disability, but trying to push past condescending bullshit and trying to perceived as equals who have so much to offer this country is heroic indeed.

And that’s why we need the Government to listen to us, the experts of disability and spend the money (paid by us, the taxpayers – even those who don’t work buy goods and services) the way that we see fit in order to enable us to be truly equal citizens in this country, worthy of dignity and self -respect, not merely rattling coins in charity buckets. All we want is equality, and this is something money can’t buy.

Oh, and if Enda could deliver on his promise to ratify the United Nations Convention of the Rights of People with Disabilities, that’d be just peachy.

20 Experiences that you are likely to relate to if you have a disability in Ireland

Hi there. Yes, it’s yet another disability post. Sorry about that, but, y’know, after living with a disability since birth and working in the disability sector for ten years, you become accustomed to the challenges facing people with disabilities every day in their quest for equality, respect, or sometimes just to be left the f*** alone to live their lives. If you are a ‘normie’, that is a person ‘without disability’, you might be a bit offended, and for this I apologise; you can’t please everyone and all that.

Here we go:

1. You are going about your normal business in your local Tesco and are reaching for an item when a stranger who has been watching you for half an hour (following you around the shop actually) pops out of nowhere to grab said item, startling you and causing you to fall on the floor. You look like a tit because you’re a grown adult who is now lying on the floor. Now they are pulling you up by your arms which is a waste of time because  your feet are not ready and bam! down you go again. Why do they let you out on your own?

2. When people can’t understand you because of your speech impairment and they start talking slower to you: ‘I – can’t – understand – you’. Well, I can still understand you, you tool, it’s me who needs to speak slower. Incidentally, I’ve been reliably informed that if someone has a hearing impairment/is deaf/Deaf, speaking slower makes things worse as the person may rely on lip-reading. So there.

3. When you try to order a wheelchair accessible taxi (the phone numbers for these are known by a sacred few) and are told that the taxi doesn’t operate past 11.30pm (come on, even Cinderella got till midnight) or that you didn’t book it four months ago,so no dice Ha, thought you’d be spontaneous, didn’t you? You thought wrong.

4. Total strangers think it’s okay to come up and bless you. Sometimes they grab your wrist, holding back tears. ‘You should go to Lourdes’, they say. I’ve been offered money to go to Lourdes and be cured. Guess what, people? I’ve been to Lourdes, and I’m still disabled. I want my money back.

5. You decide to stop being a heathen and go to Mass. I recently went to a dinner held by a disability organisation and there was a lovely Mass beforehand. However, there is something slightly disconcerting about having a Gospel where Jesus healed all the lepers and cripples when 75% of your congregation use wheelchairs or walking aids. Not that I’m equating disability with leprosy, but still.

6. You are an individual! You are You! So why is it when you see a person with a disability on the street are you likely to think, ‘I wonder do I know them’, and if you don’t, ‘I wonder why I don’t know them’.

7.  You ring Eircom/the bank/AES/Electric Ireland in relation to your most recent bill and they have those stupid voice activated menus. And then, after being on hold for 45 minutes, they disconnect you because they can’t understand you.

8. On a related note, people hanging up on you because they think you’re drunk, which saps your self-esteem so much that all you can then think about is getting very drunk.

9. Eejits trying to push your electric chair because they’re too silly to simply say ‘excuse me’. Incidentally, there is a way to manually push electric wheelchairs which involves unlocking the mechanics underneath it, which is handy if it breaks down. However, I can easily move the chair myself if I want – it’s amazing! Also, I’m pretty sure that if I lifted somebody out of the way in a queue, I’d get punched in the face.

10. If you are foolish enough to get angry or annoyed at anyone in 7, 8 or 9 above, you earn the dreaded ‘angry crip’ badge. Nobody like the angry  crip, or to use the more alliterative term ‘crip with a chip’. You think the whole world is out to get you. It’s not, it’s all in your vivid imagination. Get a grip.

11. Because of the strong support network provided by IWA and CIL (thanks guys!), it’s common for people with disabilities to befriend one another through committees, social events, etc. Beware that if you decide to meet up with your mates outside these circles, and you all have disabilities, you are guaranteed to have at least one nosy Nelly come up to you and ask ‘are you all out for the evening? Isn’t it great to get out?’ Er, out from where? Do people still think that people with disabilities should be institutionalised? Scary thought.

12. If you go for a drink/coffee/meal with your husband/friend/Personal Assistant/Family member, they may well be asked what you want to order. This is called ‘does he take sugar’ syndrome (no, honestly). Basically it’s an assumption whereby  you as a person with a disability cannot make basic decisions for yourself because you are a complete tool. No point in asking you so. You may hope for the best.

13. A noun refers to a person, place or thing. Just to clarify: a wheelchair is not a buggy, wheelbarrow or chariot; a person who uses a wheelchair is a separate entity from the wheelchair (a liberation tool), a person who uses these aids does so to get around, not just to get a pass into using the accessible toilet.

14. Which brings me to this point: sticking a wheelchair symbol on a toilet cubicle door does not make it an accessible toilet. If you cannot get the door closed when you bring your wheelchair inside the cubicle, then the toilet is not accessible. I’m sure the world does not want to watch people with disabilities pee, but hey, if it does, who am I to judge?

15. If you’re a bit of a gambler, why not head off for the day on the train? Sure, don’t they even have accessible toilets now? (not bad toilets either). Don’t forget to remind the train station staff ten times to ring ahead to your selected destination so that they can have the ramp ready for you. But don’t be surprised if, when you arrive, there is no sodding ramp and the station weren’t informed you were coming. Sure it’s no big deal travelling to the next station, begging them to get the ramp and let you off, and travelling back. Sure what else would you be doing?

16. If you’re a real daredevil altogether, get the DART. My husband nearly had his arm amputated by the doors of the DART when they closed on his hand and  then the DART proceeded to take off. He was on the platform and he could feel himself being dragged alongside the train. It took six strong men to pry the door open and release his hand. The reason why my husband had his hand in the door in the first place is because my friend and I were waiting for the ramp which didn’t materialise. What did we do? See number 15 above.

17. If you have a disability, you have to be nice, polite and well-behaved all the time. Telling someone to mind their own business does not go down well. Don’t let them know that we are real people, sssh! Some people with disabilities, just like you normies, are generous, kind and friendly. But others are just downright assholes. And guess what? Just because you know one, doesn’t mean you know us all.
18. People think it’s okay to ask you about your sex life. This is just wrong on so many levels. Why do people want to know this information? I blame programmes like ‘Little People, Big World,’ a show where a family explores their everyday lives in the public domain. I don’t want to hear about your sex life, don’t ask me about mine!
19. Having children is a gift, and there is a mistaken assumption that our children will be burdened by us and will have to care for us because we have disabilities. This will never happen as long as  the government realises that parents can be empowered through the provision of services and equipment that put us in the driving seat. Simples!
20. Finally, having a disability is not the end of the world, but people tend to think that it is. They find it incredible that we can be devoid of resentment or anger at the world for the hand we’ve been dealt. I know I have days where I wish I had more energy and less pain, but I’m sure even normies have these days. So stand (or sit) proud and tall. You are brilliant. You are fantastic. You are the subject of much speculation and curiosity. Enjoy it. Jordan had to get her assets enlarged for that sort of attention.
And all you do is go about your everyday life!
Well done, you xxx

A Scary Story

It is three weeks to Halloween. You can tell this by the smell of turf lingering in the air at four o’clock in the evenings, by the sudden chill that envelopes you in the mornings, and by the faint sound of bangers being let off by the local ruffians.
Halloween seems to be the only time of year when it’s okay to be a freak; in fact, the gorier your costume and makeup, the better. You can even add fake blood, squelchy eyeballs and severed fingers to the mix for a truly horrifying effect.

What most people are trying to achieve is to look as unhuman and frightening as possible. I’ve been opening the door to excited trick-or-treaters for six years now, who stand there waiting for me to express my terror (and to hand over the goodies).

More often than not, it is they who end up full of terror.

What they see is a misshapen young lady, with sudden and uncontrolled movements, saliva flowing freely as she reaches her hand into the oversized tub of sweets, her speech slurred as she compliments their shop-bought costumes (I haven’t seen homemade ones for years). I can’t imagine what it’s like to be that young child on my doorstep, but it’s clear to me that my disfigured body and unusual movements are scarier than any costume they will ever see.

For somebody who doesn’t have one, having a disability can be a frightening prospect. I’m sure I’m not the only one that’s been told ‘I don’t know how you do it. If I had what you had, I’d die.’ My disability has often been referred to as a ‘handicap’, ‘illness’, ‘that’ disease (which is my favourite so far) and of course, like many others, I’ve been called retard, rehab, spastic (actually correct in a way, but not when there’s an ‘a’ in front of it), and other uncomplimentary things.

The truth is that people are afraid of disability, because being born without one does not grant you immunity from the possibility that you may acquire one by being in an accident, or even develop one, such as Parkinson’s or MS. Recently there has been speculation over whether being diagnosed with Parkinson’s led to Robin Williams’ suicide. We can never know for certain, but this sort of hearsay only reinforces preconceptions that disability is something to be dreaded, often a fate worse than death.

And in spite of the outrage that followed Hitler’s T4 Project during World War II (i.e. the mass murder of millions of people with disabilities across Europe, inspired by the concepts of racial cleansing and ‘survival of the fittest’), people are still afraid of disability. Some of the implications of this for people with disabilities are obvious, such as being stared at, and imitated by, strangers; being ridiculed for the way one walks and talks; being asked ‘is there somebody with you?’ as you mind your own business and wish that others would too.

However, lack of awareness and empathy surrounding disability issues have more devastating consequences than having to endure idiotic questions from Mr. Joe Soap. There was a conference held on the 25th September last in Kilmainham which addressed the financial and social costs of disability. Unfortunately I could not attend, but it seems like the biggest cost of disability is the loss of dign¬ity. A high proportion of people with disabilities live in poverty, unable to gain profitable employment. Many have lost their Household Benefit packages and their medical cards, and people with disabilities tend to face higher food and heating bills owing to their impairments.

Every so often, experienced disability activists stage well-publicised protests against cutbacks outside the Dail. These are the people who campaigned for equal rights and deinstitutionalisation for people with disabilities, nearly twenty-five years ago. How depressing that, nearly twenty-five years later, we are still campaigning for the same things.

And believe me, these things are fundamental to people with disabilities. All we want is equality. A lot of us need assistance to contribute to our economy, be this Personal Assistance or technological assistance. We need to be given access to goods and services through the provision of accessible transport and accessible business premises. Most significantly of all, we need to promote inclusion and integration in our communities by deconstructing the preconceptions surrounding disability and promoting the ability and strengths of each individual. If we don’t, things will never change and people with disabilities will be stuck in an endless time warp.

Which would be much more frightening than all the ghost stories on the planet.

Making my own identity

There are many things in life that shape our identity. These can be ordinary things, such as where we grow up, the education we receive and the careers we choose, or extraordinary events beyond our control, such as having a disability or illness. All of these things may define who we are, but they should not determine what we are capable of.

I have a disability which in Ireland, seems to mean that I am perceived to be an object of care. Living with Cerebral Palsy has meant that over the years, I have had to allow many medical experts into my personal space, patiently enduring their prodding and poking, their testing my muscle tones in their relentless quest to determine my abilities and disabilities.

Never in a million years did these so-called ‘experts’ expect to be lost for words when I announced that I was pregnant in June 2011. Firstly, they were intrigued and made it clear that they intended to use my pregnancy and Caesarean section as some sort of case study. Secondly, they were baffled (there are seemingly few parents with disabilities in Ireland) at how somebody, who would be traditionally perceived to be an object of care, could in turn fulfil the physical and emotional demands of a small baby.

I am a stubborn and single-minded woman, and throughout my pregnancy I arranged meetings with Primary Care Support Workers, physio- and Occupational Therapists, and even the Public Health Nurse, whose initial expectations of our parenting abilities were depressingly low. However, by the time the big day arrived on the 9th February 2012, I was confident that at least these professionals were on our side.

After my daughter Alison was born, however, it did not feel as if we were all working together. Instead, it felt like the time my husband and I had spent appeasing the ‘professionals’ had been wasted. There was concerns that I would pose a safety risk to my daughter, without substantial grounds for this. On the day that my beautiful daughter and I were meant to be discharged from hospital, I was told that the hospital would need to be satisfied that there was enough practical support at home to help me with Alison, and insinuated that I would not be allowed home until they were satisfied. They recommended the use of a wheelchair and a cloth sling for transporting Alison around the house, and I had to buy this sling before they would discharge me from hospital. Incidentally, I have never used the sling, choosing instead to push Alison around the house in a sturdy buggy. I have never let her fall.

If someone were to ask me how I define myself, I would answer an aspiring journalist, a devoted wife and a dedicated mother. However, having Alison in m y life has transformed how I perceive myself as a person. Watching her grow into a beautiful, intelligent and opinionated young lady has made me realise that a person’s identity cannot truly be defined by her appearance or by her disabilities, but instead by a willingness to continuously challenge the stereotypes forced upon them by society and to live one’s life in spite of the perceptions of others.