Questions, questions everywhere

I love writing and reading about disability but I fear that I might have done so much of it lately that it has actually melted my brain into slush. When I look at an article by Dan Goodley or Colin Barnes, my brain shuts down and I refuse to take anything in, which is an enormous concern giving the nature of the course I’m doing (in case you’ve missed it, I’m doing the Certificate in Disability Studies in NUI Maynooth. I must be mad).

But during the Study Skills seminar  we had this weekend, it occurred to me that the reason I’m not taking anything in is because I’m not being critical – I’m reading but I’m not probing, not asking ‘why?’ or agreeing or disagreeing. And when I thought about it, I thought perhaps that’s why it sometimes feels that we’re moving further away from equality for disabled people – because we aren’t asking ourselves (and the powers that be) important questions about topics that need to be discussed in order for us to be recognised as equal. Questions such as:

  •  Who has the authority to decide what you can’t do – you or other people? Do ‘professionals’ always know what’s best for you? Do they always act with your best interests in mind?
  • Who profits from your impairment? I mean, seriously, a set of four wheelchair tyres can cost over a grand whereas a set of new tyres for the car is around two, three hundred Euro. My tricycle, I’m informed is worth about four grand, whereas you can get a state of the art mountain bike for a grand. An adapted car costs far more than the same model of car, unadapted. Why?
  • Why has the head of Irish Rail not been brought to answer a case under the Equal Status Act? If you’re a regular train user you might have noticed that there is a sign saying ‘We comply with the Equal Status Act’ in the wheelchair space. Can that be true if you have to give twenty-four hours’ notice to travel?
  • If a disabled person decides that their primary aim in life is to be an absolute twat, should professionals have the right to comment? To stop them? To safeguard them?
  • These particular questions are addressed time and again without being resolved: Does the Personal Assistant Service exist now as it was originally intended? Should a Personal Assistant have the right to comment on your lifestyle choices? Do they have the right to refuse to enable you to make these choices if they’re ‘not what’s best for you’? Who knows what’s best for you?
  • Should your right to your own Personal Assistant (and the hours you receive) be affected by the availability of a spouse or family member to act as your ‘carer’? What if you don’t get on with your family or they’re just using you as an excuse to claim Carer’s Allowance? (This has happened to people I know).
  • To what extent are we our  worst enemy? How much of the oppression we experience from outside sources is actually external, and how much have we internalised?  And in blaming  ourselves for being disabled, how much power are we willingly handing over to the powers-that-be, that make life-changing decisions on our behalf on a regular basis?
  • Is it dangerous to ignore the realities of impairment, and can we accept our impairments and limitations without handing over powers to the ‘so-called professionals?’
  • What will lead to the defining moment where disabled people can really be trusted to have full control over their own lives and budgets? I mean, why are disabled people being frightened out of trying Personalised Budgets/Direct Payments? Are they really that complicated, or are disabled people led to believe this so that (God forbid) they never truly experience any sense of control over their own lives?
  • If the UNCRPD has been ratified, why has there not been significant investment into Personal Assistance in the 2018 Budget? Why aren’t we building more houses for everyone, including disabled people waiting to move out of long-stay institutions and hospitals?

Achieving equality for disabled people lies in tackling these, and other tough questions. It means never settling, never accepting anything as a given without a logical and reasonable explanation. It means not taking equality as a given when many of us know this is far from the case.

When we stop questioning these important issues, we become complacent. And I think we can all agree that we simply cannot afford to do that.

 

 

Advertisements

An Open Letter to Taoiseach Leo Varadkar

From the desk of Sarah Fitzgerald (the views are my own and do not represent the views of any other disabled person or organisation).

An open letter to An Taoiseach, Mr Leo Varadkar,

Dear Mr Varadkar,

I hope this letter finds you well, or at least as well as you can be, given the current state of affairs. You don’t know me, and it’s unlikely you’ve heard of me: I’m just another BIFFO from the bog, like your predecessor, Mr Cowen. We’ll probably never meet face to face, and it’s a safe bet to say that it’s unlikely you’ll read this letter either. But it would somehow make me feel better to explain to you how I feel about today’s budget.

Firstly, it would be amiss of me to overlook the remarkable progress that has been made in Ireland over the last year for people with disabilities. After an eleven year wait, the United Nations Convention on the Rights of People with Disabilities was finally ratified. It was a wonderful, surreal moment, and your Minister with Responsibility for Disability, Mr Finian McGrath, should be very proud. But I’m a bit of a sceptic, and ratifying this precious document should only be the first step of a radical shift in attitude towards people with disabilities in this country.

Taoiseach, I have lived as a disabled person all my life. I am deeply aware of the horrific history of disability throughout the last century, not just in Ireland but worldwide: involuntary sterilisations, mass murders during the Second World War, people growing old in the back rooms of their parents’ houses, their very existence a taboo secret. In some ways, times have changed: we can live out in the community now (if we can access it), we can be educated in mainstream settings and not just in sheltered workshops, we can even get married and have children provided we are hardened against being told that we will always pose a risk to the little people we love most. This has been my narrative for as long as I can remember.

In the last ten years, another narrative has come into play, one that can be summarised as ‘budget cuts.’ You don’t need to be ‘au fait’ with the UNCRPD to agree that the recession had reversed the progress of the Irish Disability Movement to the extent where it has left us visibly shaken as a community. In 2005, I learned about the ‘philosophy of Independent Living’ and was surprised to learn that the expert on living with disability was… me! I learned how to trust myself, how to allow myself to make good and bad choices- something I’m still learning, truth be known. And it’s only now, ten years later, that I can see disabled people starting to trust in themselves and have the confidence to use our own voices.

As part of a collective of over six hundred thousand people in Ireland, I would respectfully ask you and your government to start seeing spending in the disability sector as an investment in our future and the future of this country. We are willing and ready to contribute, yet only thirty percent of us are in employment. One of the reasons for this, I believe, is down to a lack of investment in Personal Assistant Services. Now, when I talk about Personal Assistant service, I mean a service where we, the disabled people, are regarded as the ‘boss’ or managers of this service, a service where we get to pick what needs to be done, when and by whom. Cutbacks over the last ten years has led service provision to be based on a ‘medical model’ which focuses on the level of impairment rather than the level of ability of the individual. Priority in service provision is currently given to physio and personal care. So at the moment, a number of disabled individuals in Ireland are literally being helped out of bed in the morning, only to sit around in their wheelchairs all day, seeing nobody else until somebody comes back in the evening, often at half seven/eight o’clock (my daughter, who is six, goes to bed at half eight) to put them back to bed. The terms ‘carer’ and ‘Personal Assistant’ are used interchangeably by our government and the HSE.

Of course, people aren’t just trapped in their own homes. They may be considered by some of the three thousand people living in nursing homes and long-term stay wards in hospitals to be the lucky ones. Unfortunately, because of a lack of accessible housing and Personal Assistants, many people, including a thousand young people, are living in these settings, which is in direct violation of Article 19 of the UNCRPD. A significant investment in Personal Assistants and housing is badly needed. Life is too short to be incarcerated for a crime you didn’t commit.

I am a thirty-four year old wife and mother, a freelance writer and a die-hard believer in the Independent Living philosophy. I don’t want to be taken care of, or (controversially) to be overly safeguarded. I want to make mistakes, to embrace life, to live up to my potential. I shouldn’t have to downplay my abilities din order to get the support I need to make a real contribution to our society. I shouldn’t have to choose between conserving my energy for writing or having energy to parent when, with the right support, I can do both really well.

I shouldn’t have to ring my local train station twenty-four hours in advance of train journeys, and still cross my fingers in the hope that I’ll have assistance on both sides of my journey. You know the feeling of relief when the plane you’re flying on touches down at your destination? That’s how I feel when I arrive at the train station to find a ramp waiting for me.

And Mr. Varadkar, I am sick and tired of living this way. Being an activist is tiring. People are getting annoyed with me saying the same things over and over again. I get asked all the time: wouldn’t I rather write about puppies, or chocolate, or gardening? The answer is yes, of course I would. Sometimes I wish I didn’t give a shit, that my blood wouldn’t boil as I read about yet another young person trapped in a hospital, or my peers choosing between heat and food because their Disability Allowance only covers the basics of living. And yes, I’m angry – if this was your reality, you’d be angry too.

Today, I urge you to invest in us, to help us change the narrative of oppression, to enable us to contribute to Irish society in a meaningful and tangible way.

Finally, to paraphrase my good friend Shelly Gaynor, we’re not looking for anything special, just an opportunity to have the same quality of life as everyone else.

You owe it to us, our families and our children, to enable us to live the best lives possible.

Yours, etc.

Sarah Fitzgerald

Something Deep Inside

Three years later, I still can’t make up my mind what I want. I really thought that what I wanted was to be a full-time freelance writer, with nothing else to bother me during working hours – just me and my desk. I tell people I am writing a novel, or at least, trying to. So why have I just committed to spending the rest of this year, and some of next year doing Disability Studies in Maynooth? Don’t get me wrong – I have no regrets. It looks like an interesting course and it’ll be handy to have if I ever do decide to go back into employment in the disability sector.

I’ve had a really productive summer (evidently not blogging-wise but you can’t have it all). In February I was co-opted onto the Board of the National CIL which was a huge honour, and I’ve been involved in some interesting and thought-provoking projects. Most recently I attended an Independent Living workshop in Offaly which was facilitated by a fellow activist. The aim of the workshop was to get back to the roots of Independent Living and to reinforce the idea that as disabled people, we are the experts in our own needs. It was a great session.

One of the questions the facilitator asked us was ‘What are the barriers to Independent Living?’ Loads of great answers were given: lack of Personal Assistance, lack of accessible housing and transport. But I, ever awkward and different, gave the answer of ‘internalised oppression’, you know, just for the craic. The facilitator smiled.

‘Big words,’ she said. ‘Would you like to explain what that means?’

‘Sure.’ My hands were sticky with sweat. ‘Internalised oppression is when you come to believe all the negative labels given to you from outside sources.  It’s when you have been told and reminded of your limitations so much that you begin to believe them. As time goes on, you start to place limitations on yourself to the  extent where you hold yourself back from achieving what you are truly capable of.’

I have been involved one way or another in disability activism for the last fourteen years. I have seen people fighting for housing and personal assistance and accessible transport. Any progress in disability rights that was made prior to the recession has essentially been wiped out. (You are free to argue this point; I love nothing more than a good old-fashioned debate). Look, it took Ireland twelve years to ratify the United Nations Conventions for the Rights of People of Disabilities. Yet there is a long way to go before access to Personal Assistance or accessible housing will be recognised as basic rights. We are in the throes of the worst housing crisis this country has ever seen. Many families are living in abject poverty; it was just reported this week that current childcare costs can average twenty percent of household income. As always, the supports needed by disabled people to live independently are considered a luxury.

Is it selfish, given the current economic climate, for disabled people (aka people disabled by our society) to be demanding more? I’m sorry, but I don’t think so. In fact, I think disabled  people have been very accommodating over the last few years. There was barely a whimper when the charges for medical card prescriptions were introduced. The Mobility Allowance disappeared almost without warning, with nothing to replace it. in fact the only time disabled people caused a fuss in Ireland was when James Reilly callously threatened to retract a massive amount of funding from the Personal Assistant Service in 2012. Activists slept outside the Dail in the freezing cold for two nights in protest, and subsequently the cuts were reversed, a momentous occasion in Ireland’s disability history.

And as I watched the entire rotten saga unfold from the comfort of my armchair at home, I felt inspired. Not in a sort of ‘aren’t these cripples so brave’ kind of way, but it was the first time I realised that I had been so blind. It was 2012 and my little girl wasn’t even a year old yet. I had spent the whole year fighting my own battle, trying to prove to so-called health professionals that I was not a danger to my own baby. A year where I demonstrated with grit that I was more than physically capable of raising a child to the many onlookers around me, but then spent my nights lying awake, wrestling with fear and self-doubt, allowing my own tears to sting my face. Would I be physically able to raise a toddler? Would some well-meaning person report me for being a bad parent if I made a mistake? If I was struggling and had to ask for help for whatever reason (not necessarily disability related), would my child be removed from me? And yet, there was hope. People out there were protesting, demanding to be seen as equal. Demanding respect, demanding their rights.

And it was then that I realised that I was my own worst enemy. I was succumbing to fear rather than standing up and questioning the way I was treated and perceived. It took a long time for me to believe that I was a ‘proper’  and capable mother because parenthood isn’t perceived to be the norm for disabled people in Ireland. There’s horror stories and rumours everywhere. Most damaging in my case was that little internalised voice that led me to believe I was incapable.

My friends, I would put it to you that this little voice is the single biggest obstacle to true equality in Ireland. This is the voice that tells us that we are less than, the voice that  advises us not to voice how we feel ‘because no-one likes an angry crip,’ the voice that tells us that if we try harder to conform that one day we might be accepted as equals.

And this is the obstacle to true equality that I predict will be the hardest to remove. Why? Because whether your impairment is congenital or acquired, social conditioning dictates that *you* are different, that *you* must do your best to fit in.

I don’t know for sure at the time of writing this blog whether I want to work in writing or disability, or if (ideally) I get to do both.

What I do know is: Internalised oppression, I see you. I am naming you. And until my dying breath, I will strive (hopefully with others) to always challenge you.

Is Activism A Dirty Word?

Is ‘Activism’ A Dirty Word?

Every so often, I face a dilemma. It usually happens when I’ve taken on too much with writing or disability-related stuff and I find there’s just not enough hours in the day to do everything, which I find quite frustrating. It’s times like this where I find myself staring at the laptop screen, my finger hovering around the ‘delete’ button where the file that my so-called ‘novel’ is saved under. At these times, I’m ready to rip down this blog, pretend it never existed, start again.

It’s been quite a busy year, and hopefully it’ll continue to be busy for the rest of the year. In a bid to leave the disability world behind and fully embrace the world of writing, I joined the board of CIL and decided that I needed to take promoting the independent living philosophy much more seriously. (I know, it doesn’t make sense to me either). With every day that passes, I find myself becoming increasingly frustrated with the world around me, a world that I have worked hard trying to fit into. When another HIQA report is released detailing the shortcomings in residential homes, I roll my eyes, rant about it on Facebook, even write blogs about it.

Lately, however, I’ve been wondering: when it comes to fighting the status quo for people with disabilities in Ireland, am I copping out? I know I joke about being an armchair activist, but is that what I am – someone who’s good at talking the talk but reluctant to take any real action?

And is it because I’ve been conditioned to believe that no-one likes an ‘angry crip’, that no-one will ever take me seriously as a person or a writer if I choose to persistently bring so-called ‘disability issues’ into the mainstream with this blog?

I didn’t identify as an activist for a long time for this reason. I also felt like I had no right to identify as an activist. Looking back at all the great activists throughout history, they are great because they achieved something tangible. One of my greatest heroes, Ed Roberts, is the reason why many of us enjoy Personal Assistance today. During the ‘eighties, a group of wheelchair users in the US stopped buses and climbed up the steps to highlight how inaccessible they were. I love to hear such stories of radicalism, being a tad of the dramatic disposition myself. These so-called ‘radical’ actions brought about the implementation of the Americans with Disabilities Act 1990. Two years later, the first Irish Center for Independent Living was set up in 1992. These were real, remarkable achievements.

About a month ago, I watched a programme called In From The Margins, which was produced in 1993 but may as well have been filmed last week, such is its relevance to 2018’s disability politics. It followed Ursula Hegarty’s transition from residential care to a home of her own, and what struck me the most about the programme (aside from the late Donal Toolan having an abundance of curly black hair!) was that the issues Ursula faced are still facing people living in hospitals or residential homes today. It’s estimated that around three thousand people with disabilities in this country are living in residential homes or care settings, sometimes against their will, which is in direct violation of Article 19 of the United Nations Convention of the Rights of People with Disabilities. We know this because there are articles written about it sporadically every few months. Invariably there is uproar, and then it dies down.

Of course, these issues don’t cease to exist just because they’re not in the public domain anymore.

A friend of mine alerted me today that a guy called Kevin was talking to Joe Duffy on Liveline so, despite being in the library at the time, I immediately tuned in on my phone. Kevin, who was formerly a solicitor but had to leave his post early due to his MS, has been living in residential care in Dublin for the last thirteen and a half years. He is fully corpus mentis, but is lonely – in his nursing home, many of his fellow residents have dementia or Alzheimer’s, and therefore are unable to engage in conversation. He spends a lot of time in his room watching telly, and is so bored that he ends up going to bed early.

‘This is frightening,’ I texted my friend after listening to Kevin.

‘If it were any other sector of society there’d be uproar,’ she wrote back. ‘I try not to be an angry activist, but… Jesus!’  And there were those awful words, angry activist. What we strive not to be. Because no-one likes to listen to people drone on and on about the violation of human rights. We should be nice crips, smiling, not complaining all the time. After all, how are we ever going to be equal if we always point out our differences?

We have been conditioned to believe that anger is a bad thing, that we should be grateful for the progress that’s been made already, that protests are undignified and a waste of time, but history illustrates the opposite. So what are we afraid of? If you believe that one person, or a group of people can help change the world, then who are you waiting for? That person is the same person who looks back in the mirror at you every day!

You may be unpopular. You may feel alone. But you are an activist, so that’s par for the course. And my friend reminded me of a great quote, by Edmund Burke:

‘The only thing necessary for evil to triumph is for good men to say nothing’.

I’d choose activism over evil any day. Wouldn’t you?

Film Review: Sanctuary

It’s been over four years since the RTE documentary that I partook in, Somebody to Love, was aired for the first time. At the time the documentary was recorded, I was going through quite a rough patch emotionally, the mental wounds of having been so heavily scrutinised as a disabled mother had not yet healed. Frankly, I had felt hard done by, the victim of discrimination as a result of my physical impairment. But I was soon reminded, when I watched the documentary that however bad things had been for me, they were much worse for other people.

Living in Ireland all my life, I know that the subject of sexual intercourse has traditionally been taboo, especially sex outside marriage and the notion of freedom of sexual expression. But what if you were living in a country where, for you at least, having sex was illegal? What if you were excluded from exploring your sexual identity because of an outdated law that dictated that sexual intercourse before marriage is essentially rape?

Ireland has a tradition of mollycoddling disabled people, and this culture is slow to change. You may not be aware (as I wasn’t prior to taking part in the documentary) that until recently there was an archaic law called the Lunacy Act 1891 (replaced in 2015 by the Assisted Decision Making Capacity Act) that deemed it illegal for people with intellectual disabilities to have sex outside marriage. This meant that it was assumed that people with intellectual disabilities could not understand or give consent to sexual intercourse.

This is the undercurrent of the film Sanctuary. Sanctuary was originally a play commissioned by the Blue Teapot Theatre Company and written by Christian O’Reilly, who also wrote the film Inside I’m Dancing. Sanctuary is different to any other film I’ve seen depicting the lives of people with disabilities because the cast is largely comprised of people with intellectual disabilities. It’s a refreshing break from the norm of non-disabled actors assuming the roles of people with disabilities; Daniel Day Lewis played Christy in My Left Foot; in Inside I’m Dancing, the two main characters Rory and Michael were played by James McAvoy and Steven Robertson, neither of whom have disabilities in real life. So it was almost a surreal experience to be watching authentic disabled actors on screen.

But don’t be fooled into thinking that the actors were merely given these roles as some kind of tokenistic gesture – these actors are talented and each one inhabited their character with the same dedication as you’d see on any Hollywood screen. The film is set in Galway, with beautiful shots of Galway scenery showcased throughout.  Kieran Coppinger plays Larry, a quirky guy with Down Syndrome and Charlene Kelly plays Sophie, who has an intellectual disability and epilepsy. Both of the actors face the same reality as the characters they play – for them, sex before marriage is illegal. But that’s not going to stop Larry in his quest to have some ‘alone time’ with Sophie!

Tom, the care worker, brings a group of people with intellectual disabilities to the cinema, then leaves them unsupervised to arrange a hotel room for Larry and Sophie with the contents of Larry’s piggy bank. The existence of the piggy bank reminds us how childlike Larry is – or is it simply because he’s treated like a child? As the story progresses, it becomes clear how sheltered Larry has been. Although he’s in his twenties, his mother is disgusted at him for looking at a woman posing in her underwear in a magazine, and she chides him as he leaves the house for bringing too many sweets in his rucksack (she doesn’t know he’s bringing his piggy bank).

Shielding people with intellectual disabilities from the reality of sexual intercourse is bound to have repercussions. Firstly, it doesn’t make people less vulnerable to abuse, something that Sophie can attest to, having been sexually abused in her care home. Secondly, Larry knows that he needs to use a condom ‘to stop Sophie getting pregnant,’ but doesn’t know how to use one, and giving Larry a demonstration is beyond Tom’s comfort zone.  This results in Larry and Sophie having unprotected sex because, as Sophie says, ‘ah sure we couldn’t work it out.’ She smiles at the thought of having a baby with Larry, oblivious to the fact that it is highly unlikely that the State would allow two parents with intellectual disabilities raise a child.

Even though the main story is dark, some parts of the film are hilarious. While Larry and Sophie contemplate breaking the law, their unsupervised companions wander the streets of Galway and end up in comical situations, robbing shops, getting drunk and even getting high! There are some brilliant one-liners too that will put a smile on your face.

Does the film have a happy ending? That’d be telling! All I’ll say is this is a story that you won’t forget, and one that should be talked about long after the closing credits. And that the authenticity of the film – a combination of the plot, the characters and the setting -will change the way you perceive people with intellectual disabilities in a way no other film has thus far.

Sanctuary is available on Amazon. Go buy it – you won’t be disappointed!

 

 

Cripples In Crisis

Thinking that today was going to be a relatively quiet day, writing-wise, I decided to settle down and watch the documentary ‘Carers in Crisis’ (aired Tuesday 5 December) and mentally pass it off as work. I had previously decided to boycott it because I feel that over the last twelve months, there has been an overemphasis on the heroism of unpaid carers, a narrative that traditionally frames people with disabilities as ‘burdens’.

Words cannot describe how grateful I am that RTE actually approached the documentary in such a sensitive way, in a manner that not only highlights the sheer exhaustion which family carers are currently experiencing, but also emphasises  that Ireland’s charitable approach to the provision of disability services isn’t working, and is not going to work going forward either.

Let’s look at this logically. It’s estimated that there are 200,000 carers in Ireland right now. Two hundred thousand people who, whether willingly or begrudgingly, are caring for a family member who has a disability or is entering old age. Two hundred thousand people who get little recognition from the State for the fact that they have put their lives on hold in order to care for their loved ones. Often, family members, as was portrayed in the documentary, have to carry out tasks such as personal care (toileting, showering), tasks that Carers and Personal Assistants now need a QQI Level 5 qualification in Healthcare Support to perform. I’d wager that many family members have never even heard of this.

There’s no doubt that many carers are drained and, as in the case of Johanne Powell who cares for her severely disabled daughter Siobhan, at the end of their tethers. All of the parents in the documentary were hoping that their dependent children died before them because they don’t trust that the State will provide the care their loved ones need. After all, HIQA has highlighted some inhumane conditions in residential centres across the country.

But one message was particularly clear: the only way the immense and arguably unnecessary burden to family carers is going to be lifted is if we start putting the person with the disability first, something which the Junior Minister with Responsibility for Disability Finian McGrath agrees is vital. However, after meeting him in person I instantly recognised his evasiveness tactic; he continually interrupted Claire Byrne with what seemed to be pre-rehearsed speeches. With respect, after watching him and meeting him last month, I feel that he takes criticism about the status quo for people with disabilities too personally. For example, he pointed out that the respite grant has been restored. He also mentioned that there is now a taskforce working on personalised budgets for people with disabilities.

What concerns me is that his experience of disability comes from being a parent of a child with a disability and while he seems to be a fierce advocate for parents and carers, we need a Minister for Disability who will speak on our behalf. We need someone who genuinely recognises that people with disabilities are tired of constantly having to fight for our rights. We live in a country where the right to residential care was signed into our constitution in 1990, but where people with disabilities have no legal entitlement to a Personal Assistant Service. Having worked in the area of Independent Living for seven years, I am now passionate about spreading the philosophy of Independent Living, not least because having a Personal Assistant is often economically wiser than living in a residential institution. The latter can cost up to €800 per week, according to last night’s show, where having a Personal Assistant coming into a person’s own home might only cost half that.

It is only through striving to protect the rights and dignity of people with disabilities in this country that we will create a better Ireland for everyone, disabled person and carer alike. It’s time to stop pitting disabled people and carers against each other, because unless our country starts providing adequate, person-centred services, there will be no winners in the end.

The Disability Movement is in crisis. We must assert our rights at every given opportunity.

Only we can stop the Movement from moving backwards any further.

 

 

The Repression of Rachel

It was a miserable September afternoon, the 19th if I’m not mistaken, and I was sitting in the Hilton Hotel in Kilmainham with a man I’d only met once before, having coffee in the middle of the day. Sounds sordid, but I assure you it wasn’t. It was purely business. You see, I’d written a monologue and I was due to perform it in the Mansion House at a massive disability event on 23rd September, but something about the piece felt hollow, and so Peter was trying to encourage me to inject a bit of personality into it.

‘Who is this character?’ he demanded as we reread the script, me eyeing him warily. Surely he wasn’t suggesting that my perfectly written script required an overhaul, four days before the bloody event?

‘What do you mean? It’s an everyman-type character.’

‘Well, where’s she from at least?’

I knew the answer to this. ‘She’s from Kinvara. My aunt lives just outside it, in the Burren. What I’ve always found interesting about Kinvara is that it’s in County Galway, kind of on the Clare border. I thought that it’d be a good metaphor for this character, who’s stuck between having a disability and needing services to live independently, and being capable in so many ways too. She’s confused and angry about how society defines her.’

‘And if she were an animal, what would she be?’ he asked. He’s lost it, I thought. Finally I answered:

‘A caged tiger.’

‘And what is it that fuels her anger?’

I composed a perfectly generic answer: ‘The way in with society treats her like an ‘other’ and as I said before, confusion about her place in society.’

Peter wasn’t happy with my answer. ‘Be more specific. What fuels your anger?’ A lump formed in my throat.

‘The way I was treated after my daughter was born.’ As I told Peter the story, my heart broke in the same places it did nearly six years ago when I found myself trying to convince medical ‘experts’ – as well as myself – that I was a capable mother. After I finished, Peter grinned.

‘Now that’s a story worthy of drama.’ I went cold. Was he seriously suggesting I get emotionally naked in front of two hundred people?

He certainly was.

And so, on the 23rd September, I performed a monologue that I had co-written (I don’t normally write in collaboration, but it’s time to open up my mind to new experiences) in front of two hundred people.  And since 3 December marks International Day of People with Disabilities, I thought it would be appropriate to share it with you today.

 

Rachel from Kinvara, by Peter Kearns and Sarah Fitzgerald

(Rachel is sitting in a chair and a woman dressed in a white coat is sticking labels on her – scrounger, handicap, vulnerable, waste-of-space etc)

Go away. I said – go away.

Just five minutes. five minutes – that’s all I ask.

And don’t worry, I won’t forget I’m not ‘normal’

I can’t forget – I’m not allowed to forget – we are never allowed to forget!

Well I wish I could forget you… this horrible pain you’ve inflicted upon me…

But you don’t understand. I tried – I did my best…

Yes – yes I did…

people never get to hear my voice…

You say it’s because ‘they’ – those ‘mainstreamers’ – won’t understand me.

Instead you encourage them to pity me, to try and ‘cure’ me….

I am broken because you have broken me.

You told me that the only way that my life could be better

was if improved, if I made the effort…

You promised me if my impairment were cured, that I could have everything…

I did the exercises  – stretched on the hard, sticky medicine ball and I endured your prodding and poking, cutting me open  and sewing me back together and – Look at me!

What do you see when you look at me?!

I don’t know how you look people in the eye…

Convince them that you know what’s best for me…

Convince me -and them – I know nothing about running my own life…

Will you be the one to bend down and kiss me on the cheek

And stick me into a Galway or Clare nursing home

Take me out to your AGM – that once a year ‘thing’ that makes you feel good

And then store me away like normies store their Christmas decorations in the attic –

Never to be seen from one end of the year to the next?

Am I starting to sound like a broken record?

Normies think that it’s okay that I have to give twenty four hours’ notice before using public transport?

That I would rather laze around on benefits than contribute to society?

Loads – I’ve shitloads – Loads to say… but hey…

It’s easier to believe I’m a freeloading scrounger rather than someone, who could be… someone….

Actually I am someone. Seven years ago I became a wife and two years later I became a mother. But you couldn’t let me have that, could you?

Don’t pretend you don’t know what I’m talking about.

You told me that I would be a danger to my own baby.

And… even after doing all the ‘normal’ things – the Leaving Cert – battling access in an inaccessible college – being a wobbly yummy mummy was taking that mainstreaming that little bit too far.

I caught you spying on me while I struggled in the playground with those shitty nappies, staring while I tried to breastfeed – your stares dried up my milk, your judgement lessened my embraces.

I felt worthless, damaged. For a long time you led me to  believe I was not a proper  mother.

Do you know how good it feels to have proven you wrong?

And how degrading it was to have to do it in the first place?

I have a daughter, she calls me mummy

I care for her, not the other way round. Of all the labels you’ve placed on me, it’s my label – my favourite.

She is my proudest achievement – my legacy.

And you won’t ever be able to take that from me – would you – could you?

So here I am… in Kinvara… neither Galway nor Clare… neither specialised nor mainstreamed – literally ‘idir eatha’ as the mystics would say, ‘between worlds’ – the hard world of your anxious clinical society and a place I know in myself, in the unfolding mystery of my daughter…

… and her name is… (lights down)

 

 

 

 

 

 

 

 

 

Kind Gestures

Kind Gestures

It’s amazing what meaningless rubbish you can learn just in mindlessly scrolling through social media. For example, did you know that International Kindness Day is marked on 13th November each year?

Reading this got me thinking about the busy week I had last week. Last Thursday, 9th November last, a delegation of people with disabilities including myself went to meet the Junior Minister with Responsibility for Disability, Mr Finian McGrath in Dail Eireann. The main reason that the meeting was requested by Clare activist Ann-Marie Flanagan was because Ireland is the last country in the EU to ratify the United Nations Convention on the Rights of People with Disabilities. Frankly, the meeting was a farce. Minister McGrath seemed distracted throughout the meeting, and while he could sympathise with the reality of our lives, we felt he could not empathise with our fears. He constantly interrupted us, and we left the meeting feeling that we’d been heard but not listened to.

Reader, I cried on the train back to Tullamore, the train I’d given twenty-four advance notice to travel on. Onlookers asked me if I was okay, and I simply nodded. How could I possibly explain how alone I felt in that moment, the feeling of knowing that deep down the Minister who represented my needs and so many others’ needs at government level had no perception of how difficult it is to be disabled in  Ireland today? I say this with the assumption that if he knew our frustrations, he wouldn’t have been so evasive in his answers. He would’ve assured us that our rights were on the way to being recognised. If the Minister can’t reassure us, then who can?

On Friday, I needed a change of scenery and so I eagerly accepted the invitation of an old college friend to meet for coffee in Lemon on Dawson Street in Dublin. To my delight, the conversation came easy, just as it had ten years ago when I saw her last. We caught up over two pancakes each, and I realised that I’d missed debating the meaning of life with her.

‘So, what have you been up to?’ she asked over the hum of students talking. I told her that I’d had the meeting with Minister McGrath and that I felt I’d wasted my time. ‘You know,’ she said thoughtfully, chewing her omelette, ‘I’ve lived in France and what I’ve noticed is that they don’t really have the concept of kindness there, the way they do here. People are kind here.’

‘Which is a lovely thing,’ I replied. ‘Where would we be if it weren’t for kindness?’

‘Oh, it is,’ she continued, ‘but in France, things are more rights-based. Everyone knows – and gets – what they’re entitled to. It’s not perfect, it’s just…different to here.’

That got me thinking. I don’t know much about French culture, but I’m familiar with Irish culture, and my friend is absolutely right – we are,  as a nation, very kind. The problem is that we depend on kindness and charitableness as a substitute for our rights, and particularly for people with disabilities, this can be problematic. Because of a lack of proper funding in the disability sector disability organisations, for example, the Irish Wheelchair Association, put much time and energy into fundraising. In order for fundraising to be in any way lucrative, people with disabilities are forced to portray themselves as vulnerable, almost desperate. And unfortunately, it’s not a lie. Because of massive gaps in government funding, we are vulnerable and desperate.

However, the CRC and Rehabcare scandals were only examples of why organisations should not rely on charitable donations to fund their services going into the future.  Money is going into inflated salaries rather than direct service provision. Meanwhile, essential services are being cut. On the other side of the coin you have many people with disabilities in hospital beds, costing the State thousands a year, when that money would be better spend moving people into their own homes, providing a Personal Assistant Service and enabling these people, regardless of their disability, to realise their potential.

In our meeting with Minister McGrath last Thursday, we shared some painful experiences with him, to illustrate how a lack of a rights based approach is denying thousands of disabled people across Ireland the opportunity to contribute to society. We urged him to help us to change the narrative of disability from one of victimisation to empowerment.

Finally, when we tried to extract a timeline from him of when the UNCRPD would be ratified, he refused to commit to one, saying that he’d done this last year, ‘and got burnt.’ He wasn’t going to make promises he couldn’t keep, he said.

Even when Ireland does eventually ratify the Convention, our rights as people with disabilities will still be in question.

However, we should do it regardless, not out of kindness, but because it’s the right thing to do.

Kindness is lovely, but it isn’t enough. We as people with disabilities need – and deserve – more than this.

 

Do I Have a Choice?

What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.

 

 

My Dystopian Life

Guys, this evening as I sit here on my laptop, I’m starting to seriously doubt myself. When I started writing a novel two years ago now, I didn’t have a clue what I was doing or how to plan it out. And man – now it’s a mess. I can still see merit in the story, and I am a hundred percent sure what I wanted to achieve. But another story has beckoned over the last number of months, and it’s a dark, dystopian fiction (but kind of similar to the one I’m writing now in many ways).

In my fourth year of college I was introduced to the world of dystopian fiction by a professor who urged us to  read the novels and afterwards to question everything, to draw similarities between the fictional work and real life. After all, dystopian novels draw from our history. Look at 1984, for example. The use of propaganda (I.e. Hitler) to brainwash the public into trusting the ‘government’, the deliberate rewriting of history to suit a warped political agenda, the destruction of language so that the ‘proles’ have no means of expressing anger towards the Big Brother regime (any of this ringing a bell? Tuam Babies? Garda Corruption?) These are all ways in which people are worn down and forced into a narrative they do not want to partake in. And of course, rebellious Winston is forced into Room 101, where he is tortured into submission when faced with his darkest fear: rats.

Watching the television adaptation of Margaret Atwood’s dystopian novel The Handmaid’s Tale has reawakened my fascination with the dystopian form, and it’s interesting to watch my husband’s outraged reaction to the show every Sunday and to point out to him, just as we did in Apocalypse Class ten years ago, the similarities between Gilead and the world we live in now. Of course, we don’t live in the nightmarish worlds of these two novels. But I definitely feel trapped in some kind of dystopian nightmare.

I live in a country that is deliberately denying me my human rights, in a world where I constantly have to prove myself in order to have any kind of credibility. A world in which disability is seen as a medical problem rather than a social one. A world where my voice and the voice of many disabled people are dismissed as trivial or unimportant. The problem is that speaking openly and honestly about disability isn’t seen as ‘cool’ or interesting unless your views are endorsed by some random celebrity or politician, who has no idea what it’s like to be viewed as an inconvenience by your own government.

I believe in something called the philosophy of Independent Living. It was originally an American concept, its birth coinciding with other major political movements originating in the US in the 1960s. Basically, many people, including disabled people, were sick to death of being discriminated against and denied their basic human rights. And so they fought. They protested. Above all, they made it quite clear that the only real authority on the subject of disability were disabled people themselves.

Fast-forward almost sixty years, and what’s changed? Sure, things have improved. Access has improved. Disabled people even have careers and families now. But don’t be fooled: these things haven’t and still don’t come easy. We still have to fight, fight, fight.

But what’s the alternative to fighting? What would happen if disabled people sat back and said ‘sure what’s the point? What can we do?’ Well, I’ll paint you a picture, shall I?

If we continue to allow organisations to represent us instead of us representing ourselves, sooner or later we won’t be trusted in our own opinions at all. We won’t ever challenge ourselves and we will become complacent, so much so that we won’t even notice our human rights being stripped away, one by one.

If we don’t actively promote the social model of disability and be adamant and unwavering in our belief that it’s the society we live in that’s the problem, we will always be seen as patients to be improved, fixed or cured, and future generations will fail to acknowledge that there’s nothing wrong with us.

Today, across Ireland, so many disabled people in Ireland do not get a say in what time to get out of bed, when to eat dinner or where they live. Many are stuck in hospitals or in their parents’ homes where they have no control over many aspects of their lives. This is not okay. Please don’t shrug your shoulders and say ‘oh well that’s just the way it is at the moment, what can we do?’

Imagine if you had to justify every single little decision in order to be able to do what you wanted.

Imagine having to prove yourself every single day in everything you do, and be expected to do so with a smile.

Imagine having to downplay your abilities, almost to the point of degradation, and having to expose your vulnerabilities before getting the basic help you need to live independently.

This isn’t a dystopian novel. This is Ireland, right now.

And for many, it’s a scarier place than any fictional dystopian world ever created.