Power to change

If you are reading this on 8 February 2020, it’s election day! Even though the general election in Ireland was only officially called about a month ago, it feels as though the pre-election propaganda has been going on for months and I’m sure, just like me, you are all tired of it, dear reader. (And speaking of being tired of people droning on, many thanks to those of you who read the throwback blogs I’ve been sharing on social media every day since this election was announced. You are truly my stars).

Admittedly, although there have been a few leaders’ and political debates on the telebox over the last few weeks, I haven’t actually sat through a whole debate. However, I have seen and heard small glimpses of them and it was like watching toddlers fighting over who drew that lovely picture. My own daughter will be eight on Sunday and I consider her too old for “he said, she said” sort of nonsense. Micheal Martin and Leo Varadkar have been particularly irritating. Neither of them have done the disability sector any favours over the years. The cutbacks began in Micheal’s time, and Leo has been the proud Leader of a party that once proposed the complete obliteration of the now precious Personal Assistant Service (which was proposed by James Reilly, then Minister for Health, in 2012).

People haven’t forgotten these things, it seems. Things in Ireland are on the cusp of change, with many once-sceptical people declaring their intention to vote for Sinn Féin. A decade of poverty, homelessness and unemployment have driven many people to the edge, with many of us still looking for signs of this economic upturn we’re supposedly in the midst of. I think it’s Orwellian of the government to assure us that things are improving when the cost of living is so high, when over ten thousand people (just three thousand people shy of the population of Tullamore, my home town) are homeless and those who emigrated during the lows of the recession saying that they couldn’t contemplate moving back in the near future to a country offering few prospects of career progression. As a struggling freelance writer, it’s easy for me to empathise with their point of view.

With the all-important vote here now, I’m still undecided who will be my number one. I know it’s so important to use my vote – not to would be a slap in the face to those brave and fearless suffragettes – but looking through history, I’m starting to wonder whether it’s really the way to make real change. Please don’t think that I’m trying to discourage people from using their vote – far from it! – but it was an Orwellian character, the everyman Winston in the dystopian novel 1984, who said –

“If there is hope, it lies in the proles.”

What I mean by this is that we need to be fearless and unflinching in our own convictions, and it is our responsibility to ensure that those who are elected into power follow the wishes of the people. That can only happen if we stand up and use our own voices with confidence and conviction. The people I admire in life are not politicians; they are ordinary people who were not afraid to make a stand. Rosa Parks, an ordinary woman, one day decided that she had had enough of being segregated because of the colour of her skin and initiated the Montgomery bus boycott in 1955. Subsequently, she became a symbol of resistance against racism in the USA, collaborating with Martin Luther King Jr in her pursuit of justice.

Seven years later, Ed Roberts, who had contracted polio as a teenager, fought to be accepted into the University of California, Berkeley. At interview stage, he was famously told “We’ve tried cripples before and it didn’t work.”  His subsequent acceptance into the University, along with some other severely impaired students, paved the way for future disabled students to gain entry. Roberts had a revolutionary idea that he was going to recruit and employ his own “attendant” as he wanted a life independent from his mother, Zona. He was going to “hire and fire” this attendant, and instruct them to carry out tasks as per his desires, not just based on what he was perceived to “need” by others. This left Zona free to pursue her own interests and subsequently Ed was not a burden on his mother. The establishment of the Center for Independent Living in 1972 heralded a monumental shift away from the misperception that disabled people could not make their own decisions or manage their own lives. Its establishment led to the philosophy of Independent Living spreading all over the world, even coming to Ireland.

The decision to bring independent living to Ireland did not come from government. No, it came directly from disabled activists themselves, including Martin Naughton, Michael McCabe and Donal Toolan. It was disabled people that took it upon themselves to revolutionise how services were being provided to disabled people at the time. This led to the founding of the first Irish Center for Independent Living in 1992. One of their first major projects, Operation Get Out, saw disabled people moving from unsuitable and outdated institutions into their own homes, where they could make both basic and life-changing decisions with the help of their Personal Assistants.

Over the years, disabled activists in Ireland have continued fighting and pushing for equality. Dermot Walsh is remembered for his work with Dublin Bus, and over the years, many disabled people have joined the campaign for accessible transport. In 2012, when the cutbacks to PA services were so cruelly threatened it was disabled people themselves, protesting for three days and nights outside the Dáil, who reversed that decision. Sadly, we have had no time to pat ourselves on the backs, because an activist’s work is never done. Many young disabled people remain trapped indefinitely in hospitals or unsuitable residential homes. According to research carried out by Independent Living Movement Ireland in 2017, 45% of those lucky 2,200 people in current receipt of PA services only have an average of forty-five minutes’ service a day, and people who have the highest personal care needs are being prioritised.

Can we really expect the government to bring about radical change? Or does the real answer lie closer to home? I have been reminded too often lately that life is short. How do we want to spend it? I understand that fighting and campaigning can be tiring, but believe me, complacency is a far more dangerous prospect.

I remember in 1997, when I was in sixth class in primary school, we had to write a composition about what we thought 2020 might look like. Some of it was bang-on, like having the ability to shop online and being able to pay for things by tapping your credit card. Of course, other suggestions were ludicrous, like having flying cars and being able to travel back and forth through time. But if you had told pre-pubescent me that in 2020, wheelchair users would still have to give notice to travel on public transport, that disabled people would still be trapped in unsuitable nursing homes and that we would not have access to the most basic services that enabled us to live independently, I don’t think I’d have believed it. Because it’s not only unbelievable – it’s scandalous.

The good news is that we can solve these things – us, the proles – by speaking out, saying no and rejecting the status quo.

Governments don’t always bring about the change we need. And they don’t want to reveal the dirty little secret: we, the ordinary people have that power. We’ve had that power all along, the freedom to use our own voices, to speak up on behalf of our peers, to say that the status quo just isn’t good enough any more.

Do you believe that one person can make a difference to the world?

And if so, why can’t that one person be you?

Disability Rights are Human Rights

So, it’s happened, as many predicted it would – a general election has been called for the 8thFebruary, 2020. What an underhanded move, don’t you think? To call an election due to take place within three weeks? The short timeframe leaves us all scrambling to make our cases, to highlight pressing issues to election candidates in the hope that somehow, our electorates will improve our quality of life.

 

However, there is something that’s been bothering me, something that I need to clarify once and for all with you, dear reader. You may have noticed, that as a writer, I am in danger of pigeon-holing myself; after all, the name of this blog is “wobbly yummy mummy”. The keywords I use most, according to the word map located to the right of this blog are “disability”, “independent living” and “equality”. When I established this blog six years ago, I intended it to become a platform for a diverse range of subjects, not just disability activism. Yet, I don’t think of it as time wasted, nor do I worry whether it will impact on my future writing career. I’m proud of this blog, and what it represents. Above all, my writing serves as a reminder to all who read it that –

 

Disability Rights Are Human Rights

 

This reminder comes as the nation ramps up to challenge those who think they hold the solution to the many problems facing people in this country right now. Often, when organisations purporting to represent the needs of disabled people deliver their manifestoes to the vote-seeking candidates, they are told by the election hopefuls that they understand the importance of services for disabled people, that they want to protect those who are “vulnerable” within our society. That said, few candidates understand that it’s not our impairments that make us vulnerable, but rather the lack of access, services and respect that we as disabled people face on a daily basis.

The reality is that disabled people’s lives are affected in deeper ways by the government’s unwillingness to treat us as equals. It has been recently reported that Ireland is the worst country in Europe to have an impairment or disability, and this doesn’t surprise me in the slightest. One of the biggest challenges is that disabled people are still treated as “patients”, people who, in the words of prominent activist, the late Martin Naughton “are to be cared for rather than cared about.” We have to ask ourselves whether things can ever drastically improve for disabled people in Ireland as long as the HSE is the principal funder of disability services. Does this mean that disability will always be seen as a medical issue rather than a form of social oppression, like racism? Which, of course, is exactly what it is.

Progress

It would be amiss of me to imply that there have been no glimmers of hope in the last three years. On 7 March, 2018, Ireland finally ratified the United Nations Convention on the Rights of People with Disabilities. On November 19, 2019, a motion was brought to the Seanad by Donegal TD Thomas Pringle in collaboration with NUI Galway and Independent Living Movement Ireland (ILMI) to legislate for a Personal Assistant Service. This has been a monumental step not only towards securing a service for disabled people often described as “my arms and my legs” but bringing about a change in the overall narrative of disability. It was the first time in a long time that I observed the language that was used being focused on a rights-based approach rather than the usual “vulnerable” narrative. And although the safety of the future of personal assistant services is still not guaranteed, I feel optimistic about the future of disabled people right now.

But – and there’s always a but – we cannot and should not rely on elected representatives to speak on our behalf. Historically, disabled people have had to suffer the humiliation of not having their voices heard. This starts on a seemingly innocuous level, in our everyday lives, when our family members or personal assistants are spoken to instead of us being spoken to directly. This is referred to as the “does he take sugar” syndrome, and evolves into a warped reality where the views of disabled people are only taken seriously when they are endorsed by a “disability organisation”. I know that my little blog does not have the reach that I would like it to have, and while I would never claim to be the expert on disability issues, I know how exclusion, lack of access and discrimination, both direct and indirect, impacts on my everyday life.

My point is – we need to trust ourselves. We need to truly believe that we as disabled people, and we alone, know what’s best for us. If we don’t believe this – and it’s shocking how many disabled people doubt themselves because of internalised oppression – then the big decisions will be made for us. Where we live, who assists us, our dreams and the nitty-gritty of our own lives will never be in our hands.

So to reiterate: The issues facing the population as a whole also face disabled people.

 For example, disabled people are aversely affected by the housing crisis. Many adult disabled people, just like non-disabled people, are still stuck living at home with their parents. Others are living in hospitals or nursing homes for the elderly because there is no accessible housing available or because they don’t have access to Personal Assistant Services. There are no figures available to show how many of the 10,000 people who are currently homeless are disabled people, but logically people with a varied range of impairments would be logistically unable to access certain hostels and emergency accommodation.

The rising costs of living means that disabled people in Ireland (like many others) are forced to eat nutritionally deficient food such as breakfast cereal, pasta or packaged soup, because they must save money for heating and other bills, or because they lack the assistance needed to prepare a more substantial meal. And the free travel pass, which was intended to reduce isolation among disabled people from their communities, is useless when buses are inaccessible and both urban and rural train stations are unmanned.

Should I have the chance to meet any of the election hopefuls face-to-face, I shall be reminding them that disabled people are demanding their human rights, that the government urgently needs to invest in all of our lives, that we should have access to the same services and opportunities as the “non-disabled” population and, above all, that we have been very patient. We have watched the deterioration of vital services and yet the outcry has been barely audible. We have tolerated cutbacks, the denial of basic rights, the compartmentalisation of our needs into “special needs” for far too long.

We refuse to do it any longer.

We refuse to be spoken for any longer.

Henceforth, we will be collectively using our voices and demanding our human rights.

What do we want? A PA service! When do we want it? Now!

Ugh. I’ve been thinking lately about how many times I’ve been torn between pursuing other journalism opportunities and how often I end up just posting here instead. This blog is too accessible, too easy. Perhaps I should delete it, the culmination of five years’ solid work, publish it in book form, and charge extortionate amounts of money to people who want to read it. I give myself away, far too easily as a writer.

On the other hand – and I can’t believe I’m saying this – some things are more important than money. And there are some things money can’t buy. Freedom of choice, equal rights – those kind of things.

On Tuesday, 19 November 2019, an important motion is being brought to the Dáil. The motion proposes the legislation of a P.A. service. It’s safe to say that the majority of disabled people who currently use the service understand the rationale behind legislation. For too long, there has been a level of misperception that disabled people, in the words of Martin Naughton, are “to be cared for rather than cared about.” Since the onset of the recession, a culture has been created between those who care about the Independent Living Philosophy whereby it is often perceived to be “safer” to stay quiet and accept things, especially if people are afraid of losing the little provision they have.

Historically, independent living has never been approached as a “rights-based” issue in Ireland. The establishment of the Center for Independent Living in 1992 marked a monumental shift away from the charity model of disability to a rights-based approach. It celebrated the individuality of disabled people and their diverse lifestyle choices. However, as the demand for this revolutionary service grew, so too did the restrictions of it.

The HSE funds the Personal Assistant Service at present. However, significant investment is badly needed to enable people to live full, meaningful lives. Pauline Conroy, in her book entitled A Bit Different? Disability in Ireland notes that in 2017, forty-five percent of Leaders (service users) were only receiving a mere 45 minutes a day on average of Personal Assistance, largely for Personal Care. Many activists have been crying out for years for the need to create a fund exclusively for personal assistance. In our minds, “carers” tend to follow the “medical model”; disabled people are viewed either as “problematic” or as passive recipients of services, incapable of having their own voice or even of making the most basic decisions about their own lives. Whereas in the true definition of the Personal Assistant Service, the Leader is placed, as Martin Naughton once said, in the “driving seat” of their own lives.

The debate coming up next Tuesday is an important one. It won’t lead to all of us waking up on Wednesday morning in a world that has changed overnight, where we will all be able to access the level of assistance we need to live fully independently. At the very least, however, we will be creating a conversation about the need to approach Personal Assistance as a right, not as a lottery depending on your address. It’s about urging people to consider the importance of free will, of independence and choice.

If you would like to create awareness of independent living, or if you would like your local representative to debate this motion in the Dáil next Tuesday, please email me at sarahfitzgerald1984@gmail.com and I can send you an email template.

Finally, if I’ve kept your attention this far, you might be interested in this short story which details the reality of dependency and uncertainty for disabled people in Ireland.

 

(For more info on the #PASNow campaign, email me as above or visit Independent Living Movement Ireland’s website, ilmi.ie)

Budget 2020 (Poem)

In case you are wondering what triggered this  poem, there was no further investment into Personal Assistant Services in Budget 2020.

You want us to  be silent –
To just sit here and nod
While you decide what’s best for us
and play at being God.
You ignore our pleas for equality,
For a chance to show our worth,
In fact, you’ve already decided
That we’re nothing more than dirt.
Oh, are these wild accusations?
We respectfully disagree
When all people can get married
while we still struggle to be free.
You treat us like mere children
Who need to be protected
And when we ask for our rights,
Our demands are all deflected.

See, there’s no money for the cripples
To live a decent life
Everyone is struggling
And experiencing strife.
Well, now  we’re calling bullshit
On your half-assed excuses
Because, with the right support,
Us cripples have our uses.
But we’re sick of being grateful
For things we do not want,
Of having to pander to your rules
When we really want to rant.
Our predecessors fought tooth and nail
for our freedom and independence,
and yet we’ve been reduced to the hell
of care plans and needs assessments.
We’re made to be accountable,
to justify our life choices –
the sound of rustling paperwork
drown out our screaming voices.

And now, I see young people
In homes before their time –
Some only in their twenties who
Haven’t even reached their prime.
I just thought I’d give them a mention
While you wait for your fat pension.

Why aren’t people more angry, you ask,
if these issues are so bad?
Could I possibly be exaggerating
Or am I simply going mad?
But I know you know the answer –
People are paralysed by fear
And you must know, deep, deep down
That they won’t say what you want to hear.
So you choose not to listen,
to deny us basic rights
knowing that we are getting tired
of all these uphill fights.

The soft approach isn’t working,
and while I hate to curse
Your fucking lack  of consideration
is making our lives worse.
You wouldn’t put up with this shit –
Why the hell should we?
The revolution is coming,
Even if it has to be started by me.

And so, I call on all my comrades
from all corners of this land
to say we deserve better
and finally take a stand.
Our lives really matter
and deserve proper investment.
We need our PA services
to make us independent.
Get rid of institutions and stop people
From being trapped in their homes.
Invest in our future
Or endure more of these angry poems.

(choice!
Oh choice!
What a luxury)

 

 

 

 

 

 

 

Adventures Down Under

(I think this blog should sufficiently explain my absence over the last two months)

 

When I was sixteen and in Transition Year, our class acquired a new student. Her name was Melissah and she was Australian. As we got to know each other better, she told me more and more about Oz. My imagination went into overdrive as she spoke about diving in the Coral Reef and hanging out on the sunkissed beaches. It sounded like an extended episode of Home and Away and I knew that before I lay on my deathbed that I would have to see it for myself.

Melissah (‘Missy’) invited me and a few of the other girls I was friends with in school back to Australia with her, to partake in an exchange programme, but when I asked my parents, they looked at me as if I’d asked to remortgage the house. Possibly the same look I would give my own darling daughter if she randomly came home one day, at the age of sixteen, and said she was going to Australia for the summer with her pals. Sure, hun, whatever you think yourself! Get smashing that piggy-bank!

There would always be an excuse/reason for me not to go to Australia. First I had college, then I got a job straightaway with Offaly CIL, then I got married and had our beautiful daughter. I had become resigned to the idea that Australia would only ever be a pipe dream when on the 11 December 2018, as I was en route to a meeting in Carmichael House in Dublin, my husband rang to say that the flights had been booked for the second of July 2019 and to check my email to see if my Visa had come through. I don’t remember much about that meeting as I spent the entire two hours trying to be professional and not burst from uncontrollable excitement!

Having the trip of a lifetime to look forward to certainly helped me through what has been a hectic year so far. On top of trying to keep my writing going, I somehow completed the Certificate in Disability Studies in NUI Maynooth and gave two presentations about motherhood and disability in NUI Galway. I’m glad I was so busy this year because it meant that I felt like I earned the break. Before leaving, there was much deliberation over whether I should bring my electric wheelchair on the flight. To clarify for those who don’t know me as a person: my wheelchair is like a car to me because I cannot drive. It is a crucial piece of equipment in maximising my independence. Ultimately, however, we decided it was safer to leave it at home in one piece after reading several horror stories about mishandled electric wheelchairs in various airports.

Of course, a massive part of our decision to go over to Australia – and Perth specifically – was because my darling sister Alexandra has lived there for the last eight years. Alex moved to Oz two weeks after I discovered I was pregnant with Ali. When Alex heard we were coming, she was delighted and she generously offered for us to stay with her in her ‘little’ house for five weeks. This made the trip much more affordable for us and we got on without any major rows; at least we’re still speaking! I have to say she treated us really well – cooked us yummy dinners, drove us here, there and everywhere and brought Alison on days out when we were too wrecked to parent, or go anywhere. I am indebted to her and her partner Colm for these reasons alone.

The first thing I learned about Australia on our arrival on 4 July is that everything is so spread out. What I mean by that is that unless you are wealthy enough to live bang in the middle of Perth, you will need a car. Alex lives in Heathridge and while the nearest shop is five minutes’ drive away, it would probably take about forty-five minutes to walk. However, having seen the M50 of late, driving in Oz is relatively simple: people still drive on the left hand side and the roads are in excellent condition with few windy, unkempt roads. You can even cut across dual carriageways at designated points to turn around if necessary, or to cut to your destination.

Our first port of call was to the Joonalup shopping centre and the arcade, as we were unfit to do much else. On the Friday, we ventured into Perth to see Scitech, which was fully wheelchair accessible. It has interesting experiments and equipment and Ali loved it. After that, we went for an evening stroll in King’s Park, where we were overwhelmed by the magnificent view of Perth city touching the winter skyline. We saw the war memorial and picked up a nice parking fine for parking in an accessible parking space without a permit. Afterwards we applied for a wheelchair parking permit which was granted and issued within a few days. That wouldn’t happen in Ireland!

On the Saturday we went to Caversham Wildlife Park where we saw the kangaroos up close.  Their legs move as if operated by springs! We also saw koalas, parrots and llamas. There was a cowboy show and Alison and her new friend Charlie got to milk the cows. We got our photo taken with a wombat (who clearly hadn’t taken a shower in some time) and a koala. Those koalas have sharp claws, and are much heavier than they look! Still, it was an absolute honour to get so close to one.

The following day, we took it easy and watched the sunset on Burns’ Beach, a five minute drive from Alex’s house. The beach itself was spectacular and there was even a little playground for Ali and Charlie to play in. I noticed throughout our holiday that there was always a playground nearby, and not only were they clean and well-maintained, they tended to be physically challenging too: as well as the usual slides and swings, many of the parks we went to including in Mullaloo, Fremantle, Hillarys and especially the parks along Scarborough beach also had climbing walls, monkeybars and obstacle courses. Great for keeping the kids fit!

Our day out in Fremantle was extremely enjoyable. We went on a tour to Fremantle prison, which was open up until the 1980s. We saw where prisoners were hanged and as a disability activist I was pleased to hear that even wheelchair using offenders were accommodated in receiving this gruesome punishment! (Equality for all and all that). Afterwards Ali enjoyed her first taste of ice-skating in Fremantle’s ‘Winter Wonderland’. It took a few minutes but she eventually got the hang of it, with a little help from auntie Alex!

The highlight of the holiday was undoubtedly the road trip to Albany. Five hour drive down south through the bush, us three and Alex in the car. ‘Not much to see’ said Alex, and she was right: miles and miles of blackening trees, some of them with the bark burned off, and the occasional kangaroo corpse on the side of the road, which was devastating to see. Albany is a breathtaking place. After you see it, Bundoran and Kerry don’t seem to measure up! We stayed in a motel beside Middleton Beach, within walking distance of a beachside restaurant and another well-maintained playground. In the evenings we could have our dinner and chill out while we watched Alison play. The atmosphere was so relaxed out in comparison with Perth.

playground on middleton beach

Ali on Middleton Beach

From Albany we headed back north to Denmark, a quaint little town. We had booked a cabin to stay in called “The Green Leaves Cabin”. I won’t lie: when I heard cabin, I had visions of something akin to a treehouse: damp, airy and cold. From the outside, it seemed rather quaint but on the inside… I don’t think it’s an exaggeration to say that in many ways, it’s nicer than my own house. The living area was enormous, with a wood-burning stove and bookshelves stacked with contemporary books and board games. I cheated on the second night in Denmark by initiating a game of Scrabble and taking advantage by knowing where on the board to place my tiles to get the highest points (thank you, mum). There was also a plentiful DVD collection and the beds even had electric blankets! In the morning time, the birds congregated impatiently on the balcony, adamant that they wouldn’t leave until they were fed. The magpies were the most aggressive! The more we fed them, the more birds appeared. It was surreal. On the coffee table there was a little diary where people who had stayed there before wrote about their experiences. It seemed that everyone who had stayed there found it to be a truly magical place.

In Denmark, we did the Tree Top Walk in the Valley of the Giants. If you’re squeamish with heights, or walking on rickety steel bridges, then perhaps this is not for you as this attraction incorporates both. The Tree Top  Walk was wheelchair accessible, although I did find myself wondering how safe it would’ve been in my normal everyday Storm powerchair as opposed to the fold-up one I was using in Australia; the bridges buckled a little under the weight of my skimpy powerchair and the bridge itself was narrow – little wider than the wheelchair . As you walk up the bridge, you can see the magnificent trees below you. Some of them are enormous. One thing I noticed, as I observed in the John Forrest National Park, that in winter many trees lose their bark as well as their leaves. Some of the trees were also black, scorched from the hot sun during the previous summer.

me in valley of giants

Me in the Valley of Giants. Note how narrow the bridge is!

To complete our road trip, on the Friday night we stayed in Margaret River. The accommodation was not as nice as the Green Leaves (and after staying there, I don’t think that any accommodation will measure up ever again). It was a long three hour drive from Denmark, so to break up the journey we simply had to stop in to a cheese factory, a toffee factory, the Margaret River Chocolate Factory (imagine me a la Homer Simpson in The Land of Chocolate) and various little wineries (only samples, mind: Alex was driving. Takeaway was bought, however, in some places!). We didn’t get to explore much of the outdoors that evening as it was lashing rain but still it seemed a nice little place. The next morning we saw massive swells in the sea. Not exactly safe for surfing!

One thing I I had been looking forward to that ended up being a massive disappointment was the Bus Tour of Perth. It was ridiculously expensive for what it was ($150 or approximately €100 for three adults and two kids). When I looked at it online, I had visions of it being somewhat interactive like the Dublin City tours. I’ve never been on one but I’ve seen them whizzing past Trinity College, with an animated tour guide giving live commentary. On the Perth tour bus, however, the commentary is delivered via headphones, which makes for an interesting yet solitary experience. We sat on the top deck so that we could see everything but were absolutely freezing by the end of the two hour tour. For the last section of the tour, we sat downstairs. When I was sitting in my wheelchair in the designated space, I noticed that the slot for my headphones was located approximately fifty centimetres above my head – not accessible unless you’re Stretch Armstrong or you have somebody with you (perhaps disabled people in Australia don’t travel alone? I don’t know).

I can honestly say that I got to see everything I wanted to see, including the truly beautiful Rottnest Island. What was not so beautiful, alas, was the ferry ride on the way over and back. I felt truly pathetic, as the ride only lasted forty-five minutes each way, but I can now say that I know the real meaning of ‘choppy’. At one stage it felt like I was being thrashed around in an oversized washing machine. Blood-y hell. Reader, I am not ashamed to say that I puked, and dry-heaved, quite a lot in those forty-five minutes. You would need a stomach of steel not to feel a little unwell. It was worthwhile, thankfully. It is such a beautiful, laid-back place, dissimilar to any of the other places we visited. The main mode of transport is the humble bicycle and my heart swelled with pride watching little and big Ali cycle approximately fifteen kilometres together, side by side. On the island, I saw my first ever live quokka. They rambled all over the islands, waiting for you to take selfies with them.

alex and ali on rottnest

Two Alis on Rottnest Island

We packed so much into our five and a half weeks that even still, my body is still trying to regulate itself. From going to the ‘Gold Class’ cinema in Joonalup to bowling, we were rarely sitting around doing nothing. One evening we took a boat tour around the Perth basin and Ali even got to ‘drive’ the boat for a few minutes. Quad-biking across the sand dunes in Lancelin was a particularly exhilarating experience. It was tremendous fun. We were guided across the dunes by professional guides who led us down a couple of particularly steep slopes (the first one came rather by surprise and I’d say you could hear me screaming back here in Ireland!)  I wouldn’t say it’s a wheelchair accessible activity though, which is why I sat in the car while the others went sandboarding. It was definitely one of the highlights of the trip.

jay and me on quad in lancelin

Quadding at Lancelin Sand Dunes

Even as I write this, I still can’t believe that I’m home from the dream holiday that I’d been mentally planning for nearly twenty years. Although I missed home (specifically, the people at home) it was still hard to say goodbye to Alex and the country which will always have a piece my heart. Now, although I love the bright evenings here (it got dark at six in the evening in Oz as it was winter) I find myself missing the sound of busy crickets, the sweet smell of eucalyptus and the open highways (freeways? Not sure what the difference is?) If this is something that’s on your bucket list, do it. You know the way that sometimes reality doesn’t live up to your dreams? Yes? This isn’t like that at all. It truly was a once-in-a-lifetime experience that I will never forget.

Finally ( and I write this paragraph specifically for my wobbly tribe) what worried me most prior to the trip was how we’d manage in the airports, especially in Dubai where our stopover was only two-and-a-half hours. I chickened out of taking my own electric chair, so I was in a manual chair in the airport. The service we got when we landed in Dubai both times was excellent. Really top class. The staff were amazing, pleasant and brought us to our connecting flight promptly, even offering to stop in duty-free on the way. I was searched in security by a female guard in a little private booth. When we arrived back into Dublin after our trip, I was helped off the plane and brought into arrivals by a member of staff in an airport chair. It took forty minutes for my own wheelchair to come out on the oversized luggage belt (it came out upside down). This is why many of us are nervous of flying with our wheelchairs!)

And now, back to writing and to reality… and to continuing the job hunt….

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.

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)

 

 

 

 

 

 

 

 

 

Fight, Fight, Fight

Before they cut the cord,
They shake their heads and say
That having a ‘child like that’ won’t be easy
And probably won’t live very long anyway
(Well one must hope).
Because, heaven forbid
This child is a drain on our resources,
A
nd if it survives it faces a lifetime of pain
And completing meaningless little courses,
The kind that would never get you a job
Beyond stacking shelves in Aldi,
He may never talk and never walk
Or go to school, or get married.
But those little voice inside your parents shouts with all their might,
‘You don’t know what you’re on about. We will fight, fight, fight.’

*

You dodge the bullet of special education
Thanks to your parents’ begging and tears,
You work and work to prove yourself –
Much harder than your peers.

You’re told to ignore the insults:
Spastic, rehab, handicap,
They don’t know what they’re saying
And it would be rude to fight back.
‘Oh aren’t you an inspiration?’
They say when you achieve
Enough points in your Leaving Cert
To grant you the reprieve
From languishing in a day care centre
And instead you are lucky enough
To study in University just like you always dreamed.

Suddenly you’re equal. It’s too good to be true
And people are sitting up and listening to you.
After all these years they realise
You have something of worth to say,
You’re finally taken seriously!
Nothing can get in your way!
Then BAM! You are spat back out
And put back in your place
When you leave third level education
And fall right on your face.
What makes you feel so special
And worthy of a job
When you walk like an old drunk
And dribble like a slob?
College has given you notions
That simply will not do!
But don’t worry – there’s lots of Jobbridge courses
For people just like you.
But the niggling voice inside is saying ‘This simply isn’t right.
I want so much better. I will fight, fight, fight.’

****

And so I don the armour
And pick up the heavy sword
To follow in the footsteps
Of activists gone before.

Ignoring the voices of normies
Telling me that I’m an ingrate
Don’t I know I would be dead but
For the mercy of this state?
But I don’t feel their compassion,
Just a weight upon my heart –
I just want to fix the world
But I don’t know where to start.
A world where I need not give notice
To travel on a train
A world where I don’t have to beg for my rights
Time and time again.
And those who once paved the way for us
Are dying, one by one –
Dying fighting a battle
That they have never won.
The workload is increasing
And people start to look to me
For little nuggets of wisdom.
‘What shall we do? Will we ever see
This so-called progress that’s meant to be
Happening in Ireland right now?’
I can’t answer, I don’t know how.

And I plaster on a smile
And blog about something deep,
Knowing that they don’t know
I sometimes cry before I sleep.
You can’t show ‘them’ your weakness –
They’ll feast on that like cake –
So you simply be persistent until you
Wonder how much more you can take.

You hope your messages are seeping through,
Although you never are quite sure,
When people say they understand,
Then refuse to ramp a door.
You start to become repetitive,
Repeat, repeat, repeat.
And suddenly you’re that annoying crip
That people cross the street
To avoid.

And you smile inside
Because in your heart you hope
That it’s getting harder to hide
From the grim reality facing people in Ireland today.

*

Sometimes it feels that we’re getting nowhere
And no-one hears our plight,
But we owe it to our children
To stick up for what is right.
And they might have to do the same
Which should be to this country’s shame,
But in every single disabled person’s name
We have no choice
But to suck it up
(because Ireland’s fucked it up)
And continue
To fight, fight, fight.

Unsocial Media?

I’m in writing mode now. But ten minutes ago I was flitting mindlessly around Twitter and Facebook, seeing what was happening in the world. You don’t need to tell me this is a waste of my time, of course I know that. By ‘waste of my time’ I naturally mean ‘waste of my writing time.’

A few months ago, I felt so guilty about the length of time I was spending on social media that I deleted both my Twitter and Facebook accounts. I think this lasted all of one day before I panicked and reinstated them. It’s sort of disturbing to know that ‘do you want to permanently delete your account?’ doesn’t actually mean what you’d think it would, as even after choosing this option your account can be restored.

It’s depressing how social media owns us. We all know how sharing pictures of our kids and our houses and our beautiful pets can make us look needy, narcissistic and fake. Who hasn’t been scrolling through their Facebook or Twitter feed at one stage or another and thought, ‘oh my God, this is a pile of rubbish, why am I still on social media?’

We’re told that social media is ruining the ability of people to make real-life friendships and conversations. Well, I’m sorry, but social media is not the sole scapegoat for people being lonely. I’m sure I’m not the only one who doesn’t live in the same town as any of my family members. For many of us, it’s not a case of going up the road for a quiet natter with family or friends (I have one close friend living in town at the moment). People are out living their own lives in every corner of the world, and it’s social media that is keeping them all connected.

Social media has helped me in three areas of my life: as a mother, a writer and a person with a disability. When Ali was born, my friend added me to some wonderful parenting groups where clueless first time parents like me were asking questions about parenthood. Often I don’t comment: instead I ‘lurk’, nodding silently in agreement with other mums. In fact it was another mother’s open admission on Facebook that she was struggling with PND that ultimately motivated me to get the help I needed, take care of myself and write a blog about it. Knowing that I was not alone really helped. I also joined a reflux survivors’ page when Ali had reflux and seeing other parents come out the other side really gave me hope during this difficult time.

As a writer, being present on social media can be both rewarding and tiring. I’m still trying to find the balance between suave self-promotion and being interesting without just being plain annoying. In terms of rounding up an audience for my blog, I’ve found Twitter to be especially useful. Like most Twitter users, I haven’t a  clue who half of my followers are, but some have proven to be really useful contacts. For example I met a lady on Twitter who helped me find some secondary reading for writing my novel. I met another lady who’s teaching me about chocolate and making material accessible for the visually impaired.

Finally, social media is opening up the world for so many people with disabilities right now. Whereas before peer support mainly involved occasional meetings or coffee mornings, people with disabilities can now communicate with each other on a daily basis. This is so important given that there are nearly three thousand people with disabilities living in inappropriate nursing homes or hospitals and thousands more, be it through lack of transport or Personal Assistance, trapped in their own homes. Social media is becoming an increasingly popular tool for PWD challenging injustice in their everyday lives, and as a result, our stories are being highlighted by mainstream sources including local and national newspapers. People who were once voiceless are now becoming very vocal, all from the comfort of their own homes. The inability to get out does not necessarily mean the inability to participate, to count, and to matter.

So although I should probably curtail my time skulking around on Facebook and Twitter, I’m not ashamed to acknowledge that social media has helped me become a better mother, a more conscientious writer and a fiercer activist. I’m so grateful to be part of a virtual community that accepts and helps me. It certainly doesn’t beat face-to-face contact but it does make the world that little bit more accessible. Not just for people with disabilities, but for everyone.

 

Ps. If you enjoyed this blog, ‘like’ and ‘share’. Joking!

Pps. Well, half-joking anyway