Category Archives: Disability

Meaningless rant on a Friday night

Posted on by
1

I’m upset. And I know deep down when I’m upset that I should turn off the laptop, walk away and root out a tin of Celebrations from the spare room that ‘we’re saving for Christmas.’ But like a fool I can’t do that. I need to get this off my chest.

First of all, I’m upset with myself. I’ve been around for thirty-two years, you’d think with all of the physical and metaphorical knocks I’ve had in my lifetime my skin would be thicker. That stupid comments wouldn’t get to me.

Today, Ann Marie Flanagan, a disability activist from Clare, wrote a well articulated article for thejournal.ie about why Ireland urgently needs to ratify the United Nations Convention for the Rights of People with Disabilities. Unfortunately some of the comments on the article demonstrated the frightening ignorance of some of the Irish population. (I have said ‘some’ twice, I am not making generalisations, okay. Some of you are lovely). Yes, I know, thejournal.ie and trolls are well-known bedfellows. And like the gobshite that I am, I fed the greedy trolls.

One comment that was made was along the lines of ‘You need a PA to get things done and you thought it’d be a great idea to have a child?’ I don’t know this person from Adam, nor he me, but this isn’t the first time I heard this particular line. In fact, the first time I heard this was in the hospital the day after I had my daughter and I was walking to the toilet for the first time after the section. It wasn’t even a nurse that said it, it was an orderly (who we reported afterwards).  It wasn’t any of her business, but we weren’t going to go all angry  crip on her and run the risk of not being able to bring Alison home. Which nearly happened anyway when the head midwife suddenly, for no apparent reason, decided that we couldn’t go home because I was going to be a danger to my baby.

And that moment has never left me. I fought so hard to prove myself before Alison was born, and yet it wasn’t enough. And when I developed postnatal depression afterwards, I felt that I couldn’t seek help in case I accidently revealed some vulnerability and had my daughter taken away from me. There’s an underlying narrative to disability: everything is a struggle. That narrative begins from the day we are born. And I’m so tired of it, I really am.

I’m tired of biting my tongue every time someone comes over to Alison and says to her ‘are you looking after your mammy?’ I know it’s harmless banter, but I’m the parent, she is my daughter. She has her little chores but nothing like a carer’s role. And having a good PA service will ensure it always stays that way. Alison is very much a child, and will always be, because I am her capable mum. I have to tell myself this every day, and I’m sick of it.

I’m tired of explaining my personal choices to strangers, of having to reassure them that I know what I’m doing (I do have a Trinity degree after all) and having to wangle that degree into conversation to gain credibility from them.

I’m tired of the weight of history on my shoulders, a history that depicted disability as a fate worse than death, that it was perfectly okay to control disabled people and their families by denying them the appropriate services in order for them to live independently, which ultimately results in resentment of the disabled person by their families (Johanne Powell being the most recent example of this).

I honestly don’t know if I can change any of this stuff for the better.

But what I do know is that there’s a box of chocolates in the spare room, and while it won’t exactly change the world, at least I’ll go to bed on a (sugar) high.

Ireland and Disability: A Reflection of 2016

Image

Reply

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.

Round my Hometown

Posted on by
2

I was born and reared in the Midlands town of Tullamore for nineteen years.

Between the ages of nineteen and twenty-five, I decided to spread my wings and I moved to Dublin while studying in Trinity. I loved Dublin and living independently, and I think my favourite part was being able to get around so easily, whether it was in my electric wheelchair or using public transport (buses and Luases, I mean. The DART is notoriously dangerous and unreliable for people who use wheelchairs or have mobility difficulties). The Luas in particular became my lifeline when I was living out in Rathmines, and I used to use it coming into work in Trinity during the summer. When somewhere is easy to access and get around, it really adds to your quality of life. At one point, I was both working and studying. It was great.

Although I loved Dublin, I knew that I couldn’t afford to stay there after I graduated. So I moved to Mullingar, then Portlaoise before finally choosing to stay in Tullamore. It was great to be in a place that I felt I belonged in and that I thought I could get around easily and independently. And to be fair, I could – until I started using a wheelchair. Suddenly, certain areas of Tullamore didn’t seem so welcoming to me any more.

I’ve always believed that disability is defined by the obstacles that are created by society rather than one’s individual impairment, and I believe that reasonable accommodations such as ramps, clear signage, wide step-free doors and loud signals at pedestrian crossings can go a long way in ensuring our town is accessible to all who use it. In 2014, the Offaly Leader Forum (now the Laois/Offaly Leader Forum), which is a group of people with varied disabilities – physical and sensory – organised and conducted a full-scale accessibility review of Tullamore, the first of its kind in ten years. As people with disabilities, we were the experts in identifying barriers to access in town. The group took the undertaking seriously, taking photographs and compiling reports, and subsequently these reports were compiled into a hundred-and-one paged document, an impressive achievement by any standards. We then presented it to town councillors in Tullamore Town Library (which is accessible, according to our audit) and urged them to see Tullamore through our eyes.

Since making our presentation, the Laois/Offaly Leader Forum has established good working relationships with our town councillors, who we have met with several times to voice our concerns. Through doing this, we are now working together, and we have urged the council to consult us whenever they make changes in the town. And recently we discovered that our annoying persistence is starting to pay off.

Little changes and repairs are taking place all over town, but for me the most significant of these is  the ramps that have now been installed on the top of Main Street and at the Srah Roundabout. I live in Glendaniel, which is ten minutes’ walk from the Town Park, Lidl and Alison’s primary school, Scoil Mhuire, and the installation of these ramps means that I no longer have to proceed beside the footpath on the road onto traffic coming off the roundabout. It’s safer for me, my child and for the poor drivers who I’m sure don’t want to dent their cars on my wheelchair…! And the best part of the repairs is the knowledge that as a group, the Laois/Offaly Leader Forum, were taken seriously and listened to. But then again, we were dealing with people we knew for years, and people who have always supported the Laois/Offaly Leader Forum, for example Eddie Fitzpatrick and Declan Harvey (among many others, of course). Isn’t that the most important thing: being able to truly be an equal part of your community?

Now, more than ever, I’m looking forward to raising our child in a town that means so much to me. The town where I went to school, and developed a passion for writing. The town where I got my first summer job in the Tullamore Tribune, as well as my first ‘real job’ in the Offaly Centre for Independent Living Ltd. The town where my neighbour, who used to live eight doors down us, remains my best friend.

I have to admit, Tullamore always was a pretty great place to live, but with these little changes to our town, it can become a great place for everybody to live independently.

The Trump Card

Posted on by
2

Like all of us, I woke up this morning to the horrible news that Donald Trump has been elected President of the United States. (Slow clap for those who elected him). Everybody I’ve spoken to so far is absolutely terrified of the wider-reaching implications this will have. Acclaimed author and recently turned television presenter Louise O’Neill wrote a long status on Facebook this morning expressing her fear for all people, including women, children and people with disabilities.

Once I saw the words ‘people with disabilities,’ I knew I had to write something in response.

Being an average Josephine on the other side of the pond, I can’t see what (some of) the people of America would see in Trump. He’s rude, obnoxious, racist, sexist, and every other ‘ist’ you can think of. He’s a modern day Hitler, with a warped vision and he doesn’t care who he has to hurt, sideline or destroy in order to reach this vision. But I have to admit, I wasn’t that surprised he was elected. The vast majority of people want change, but many are afraid of what would happen if it actually came about.

Just look at our own situation in Ireland for a second. We had a general election back in February, and everyone I spoke to about it was adamant that Enda Kenny would not get in again. His government made one of the biggest threats to Personal Assistant Services in the history of the State. Cuts made to welfare allowances, the creation of the giant money pit known as Irish Water… I could go on incessantly. And yet, our only alternative was to vote Independent (which I did) or to vote for Fianna Fail, who led the country into recession in the first place. (Whoever voted for Gerry Adams needs their heads examined).

So here we are again, and what are we going to do about it? Have a good old moan. Rant about it on Facebook. Write a blog.

After all, we can’t change the world, can we? We’re only small, insignificant people. So why bother, right?

This is exactly how I felt in work a year and a half ago. Working in the area of Independent Living for seven years and hearing about how hard people had to work to reach their goals. How many obstacles stand in their way: negative attitudes, inaccessible environments, fear of losing their benefits and their medical cards. I started to wonder how we could change all this, and my head hurt. And the more research I did into the discrimination against people with disabilities, the more disheartened I became.

Whether we are interested in history or not, our personal history, and our wider social history, are the cornerstones of who we are. And for me, as a disabled person (a person disabled by society) it was only when I became aware of this history that I developed a clearer understanding of what I was up against. Hitler’s T4 Projekt, which involved the ‘mercy killing’ of an estimated 700,000 people with disabilities, was a horrific act, but yet people with disabilities continue to fight for their basic rights, to live in their own homes, to do whatever they want whenever they want, to be recognised as equal. Elsewhere across the world, disabled women across the world continue to be forced into sterilisation, for fear that they will inflict more disabled children upon society. This is perceived to be a bad thing, because society dictates that it’s a bad thing.

Now that I know about all of this stuff, I can’t unlearn it. Born during the wrong era, in the wrong country, this could’ve been my fate. Who knows – the way the world is going it still could be.

As many of you know, I’ve been trying to  write a novel for over a year now, and the theme of the novel is exactly what I discussed above. It’s about a woman with Cerebral Palsy who’s been moulded by society’s low expectations of her, about her struggle to express her individuality in a world that wants to define her, and how, like all of us, the past has left a permanent impression on how she sees the world and her thought processes. Can a person ever be separated from their past?

Can our society?

The majority of us want a fair and equal society, but unfortunately this may have to happen in spite of, not because of, those in power. From the moment we are born, we are part of a machine. Some of us are seen as the core components, others merely the decorative extras. Some still are perceived to be the silicone packets that come in handbags – no-one seems to know what they’re for. We still live in a world where physical ability is prized over everything else, where impairment is seen as a weakness, where medical advances and robotic legs seem to be favoured over inclusiveness and equality for people with disabilities.

So Donald Trump is now the president of the US, and I think that instead of tearing our hair out we need to remain strong and calm, be we people of colour, women, men, children, people with disabilities. We need to look to the future and strive to achieve the world we want to leave to our children. We need to stand together, exercise love and understanding, and never settle for anything less than acceptance and equality. Change will only happen when we instigate it

After all, history should be used as a lesson. And if we don’t learn from it, then we shouldn’t be surprised when it repeats itself.

A Tribute to Martin Naughton: Activist, Campaigner, Friend

Posted on by
4

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

Posted on by
2

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

Posted on by
2

 

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.

#mebeforeableism

Posted on by
2

 

This isn’t going to be a long blog post (I hope). It’s one of these posts that I’m writing solely to motivate myself to do a bit of writing, and to unblock my brain (apparently, ‘writer’s block’ does not exist; I attest otherwise).

There’s been a bit of a shitstorm online over the last few days about the film, Me Before You, which is based on a novel of the same name by Jojo Moyes. Disability Activists have been  blogging furiously, slamming the (mis)representation of disability both in the novel and the film. The disabled character, Will, has chosen to avail of assisted suicide in Switzerland because now that he is paralysed following a motorbike accident, he doesn’t think that life is worth living. And *spoiler alert*, that’s exactly what he does at the end of the novel.

Is it wrong that I want to slap a fictional character across the face and say, ‘Cop the f**k on. You have to use a wheelchair, but you’re not the only wheelchair user in the world. You’re only in your twenties. Ah here?’ Is it wrong to want to slap the other characters for not slapping him across the face?

Over the last few days I’ve read Extraordinary Lives, a book compiled and edited by the Irish Wheelchair Association’s Joanna Marsden (who also edits the Spokeout magazine, a quarterly publication issued by the IWA), which paints some interesting pictures of disability. All of these stories have one thing in common: each person strives to be integrated into a society which sees them as deviant. They challenged stereotypical notions of being disabled and set about removing barriers to integration. They excel, not in spite of their ‘impairments’, but in spite of a society that doesn’t always think they are capable. Many of these people were instrumental in advancing the Independent Living Movement in Ireland.

I’ve been an active member of the Independent Living Movement for almost ten years now, and I worked in the area of Independent Living for nearly seven of those. During this time I saw first hand my fellow disabled activists protesting against cutbacks to Personal Assistant Services. I witnessed the introduction of medical card charges, the cutting of the Household Benefit Package, the scrapping of the Christmas Bonus.

I also watched what was going on in the UK, and what continues to happen: disabled people being refused their Disabled Living Allowance (DLA) because they weren’t ‘disabled’ enough to qualify; people being forced onto Jobseeker’s Allowance (JSA) after being told they were ‘fit for work’ (even though it has transpired that some of these claimants died afterwards either from terminal illnesses or suicide); disabled people being portrayed as ‘scroungers’ because of the benefits they claim,
leaving them to become victims of hate crime.

It has been hinted that Leo Varadkar is going to bring in a similar system over here, despite the negative press it  has received in the UK. Well, good luck to you Leo. I know of so many disabled people who have openly declared themselves as being available for work, and yet still struggle to secure paid employment. I know others who can’t afford to work because they will lose their medical card, making earning money a futile exercise. And you can launch as many disabled employment schemes as you like, but what we really want is to be accommodated in a ‘normal’ working environment, and recognised for our skills rather than offered a tokenistic job for the sake of massaging the unemployment figures. (Many disabled people don’t show up on the live register because they are on Disability Allowance not Unemployment Benefit).

So going back to Me Before You. On one hand it is just a story written by an author, doing her job as a storyteller, telling the story of her characters, one of whom just so happens to have a spinal cord injury. Fair enough. On the other hand, the reaction to it from  the disabled community should highlight how frustrated many of us are as being portrayed by Hollywood as hapless victims with nothing real or tangible to offer those around us. it’s time for us to stand up and show that it’s not that we are not worthy to live in society but rather that society must adapt and accommodate not only our physical needs, but our emotional and social ones too. We must teach people that our impairments do not make us tragic, and to be comfortable around disability.

Me Before You was written by a non-disabled author. Let’s not be afraid to write our own story.

* I feel I should point out that I use the word ‘disabled’ to denote people who are disabled by the society they live in, not their individual impairments.

y

Show me what you’re worth

Posted on by
1

Value and worth are based on  all sorts of things. There’s material value, namely, the kind of house you own, the kind of car you drive, the balance on your bank account. There’s emotional value, which I think means your support network, the people who are still there when you’re being whingy and clingy and annoying. In today’s fast-paced world, value is obviously placed on the person who can perform the most tasks within a set time frame. Words to describe this person might include dynamic, motivated, driven, dedicated.

From the cradle to the grave, it seems as if life can feel like a great big competition. Babies’ weight and height are constantly compared. From the moment our children start school, there are art competitions, handwriting competitions, sports days. Although our job as parents is to teach our kids that they can only do their best, somewhere along the these kids learn that it’s important to be the best, it’s important to win. Just today, my three and a half year old daughter came home, devastated because she didn’t win a game of musical chairs at playschool. She’s learning that sometimes she loses, that she can’t win all of the time. This is something that I as a parent must teach her, and yet, I can empathise with her. I know what it’s like to lose in a world where winning seems so important.

As the loyal followers of my blog will know (hi dad!) I’m on a six month career break at the moment, and although I am enjoying it, it’s hard as well. We are born into a society where we are taught from an early age that having the best job, the highest paying job is something we should aspire to. As a person with a disability, our narratives are quite different. First we are born, and most of the time our parents are told not to expect too much. If we live past  a week or two, that in itself would be a remarkable achievement. Our parents don’t love us objectively, however; to them, we are everything. They push us through the system, ignoring the derogatory comments, challenging the lack of educational supports, tolerating being called delusional and stubborn. They don’t accept that their children are not worthy of equal treatment, and in turn, as we grow older, we must continually challenge the system too, proving ourselves to be capable, autonomous individuals.

Historically, man’s worth has always been connected with their physical and intellectual strength. During the Stone Age, people with physical impairments were often left to die. During the Christian era, people with disabilities were viewed as objects of pity, as charity cases. Then of course Charles Darwin came up with his riveting ‘survival of the fittest’ theory, a notion that Hitler took very literally as he carried out ‘assessments’ on people with disabilities, where he decided whether people could live or die based on their physical and mental capabilities. Granted, Hitler was a lunatic – few would dispute that – but in spite of how controversial his plan of creating the perfect human race was, sometimes it feels that we haven’t moved far from the idea of equating somebody’s worth with what someone can physically do.

When I was in college studying feminism, we used to discuss something called ‘the virgin/whore dichotomy’. Basically, it was this notion that women were either one or the other, and that in failing to live up to the  ideal of  the perfect virginal woman, they were imperfect, damaged, inferior. I often feel that when a story is told in the media about disability, the subject is either portrayed as being super-inspirational or vulnerable. You know the stories I’m on about (I’ve  written some and been the subject of others), they normally go along the lines of ‘Despite being in a wheelchair and taking ten tablets a day, Joe has managed to learn Chinese and Computer programming,’ or ‘Because of the cutbacks to her Personal Assistant Service, Emma may not be  able to enjoy living independently in her own home for too much longer.’  Stories like the latter are often the only way to highlight how the recession has affected people with disabilities. We sacrifice our  dignity in order to get our point across. And I believe this should not be necessary.

People with disabilities have much to offer society, and they are worth far more than a paltry €30 on a Jobbridge Scheme. All the new plans to create jobs for people with disabilities are laughable because many of us don’t want to be segregated from the main workforce. All we want is equality, which is not the ability to do as much as our peers, but to be recognised as useful, productive members of society.  Hopefully the UN Convention on Human Rights for People with Disabilities will be ratified next year, even as a tokenistic gesture that everyone should have equal rights.

We are worth so much to society, and now it’s time for us to be more vocal and construct our own narratives. There is no  need to feel small and insignificant. Shout loud. Make sure your voice is heard. Don’t let people  make you think that your issues don’t matter because they’re only perceived to affect a small number of people.

We deserve equality, in spite of our limitations. We are worth  nothing less.

Budget 2016: What money can’t buy.

Posted on by
1

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.