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Áiseanna Tacaíochta Newsletter | April 2015
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Changing the future of disability

Welcome to the Áiseanna Tacaíochta newsletter!

Thank you for subscribing to the Áiseanna Tacaíochta (ÁT) newsletter, and a big welcome to our inaugural issue!  We want this to be your space to share your experiences and discuss the issues important to you, and an important starting point on the journey to a future of equality and inclusion for people with disabilities in Ireland.   
 



Áiseanna Tacaíochta. 

Ok, we put our hands up!  We didn’t choose an easy name to go by – it might not be one you’ll be shouting from the rooftops without a couple of elocution lessons! - but we hope, once you get to know it, it’s one you won’t forget.

And we couldn’t be happier that, by signing up to our new newsletter, it seems you do want to get to know us.  We’re all about bringing people together – whether you live with disability or not, even whether you can pronounce our name or not – and making a society that’s better for us all.

Our idea for change is to offer Direct Payments to people with disabilities in Ireland for the first time, empowering everyone to take charge of their full rights to independence, equality and freedom.  We were founded nearly five years ago by four people who live with disability, and, to this day, everything we do is sparked by real experience and a genuine passion for Independent Living.

So, let’s get technical for a minute.  How does this work?  Under our model, as one of our Leaders, you receive a budget allocated to support your service needs from the Health Service Executive (HSE).  We then assist you to set up your personal support networks and your own company so that we can re-route this funding straight to you.  This means that you have the freedom to choose and manage your own services, mainly Personal Assistance (PA), and to live your life in whatever way you want to.

This is obviously a very important part of what we do, and we’re proud to be leading the way on it.  But what we’re really excited about is creating a new energy around disability: empowering ourselves, embracing our rights, challenging how we’re seen and what we’ve been told, and changing the narrative for good.  Our First Assembly event in May aims to do exactly that, for instance, as do all our plans for the future.

This is why we can’t wait to get to know you too; we want to build a real community of people who firmly believe in the change that needs to happen and stand together to demand it.  We believe in equality for people with disabilities, in human rights, in funding for services that truly support people and fit in with their lives – and in the power of communities who can bring this vision alive.

Talk to us: tell us your stories and your experiences, and share your opinions on anything that means something to you.  Be as serious, as happy, as outraged, or as irreverent as you want to be: this newsletter can act as a loud-speaker for all your thoughts and ideas, shaping us as a community that knows where it wants to go. 
You can react to our articles, write pieces yourself or just call us and spill whatever’s in your head to us so that we can share it here – it’s up to you how you get involved, but the important thing is that you do get involved.

On our part, we promise to share everything too: from who we are and what we do to how and why we do it.  You’ll meet our team and our Leaders, hear our news, share our hopes and, who knows, maybe even get that elocution lesson!

So, join us on on that rooftop and, even if it’s not our name you’re shouting, let’s make some noise together.

The Á-Team

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Join the First Assembly 2015

Stand up for disability rights
 

We’ve all seen it happen before: one day or even one moment that turns the course of history in a new direction.  In 2015, we want to give disability its moment and to explore how we can use our rights to make real equality our destination.  Join us in the inaugural First Assembly in Athlone on 4th May to make this happen!   

Human rights bind us together as a society but, for people with disabilities, those rights are too often bound less tightly.  Each of us should not only expect but is entitled to live with independence, freedom, and choice – all of the things that signify a fulfilling, enriching life.

But, to be brutally - maybe even painfully - honest, each of us probably also expects, in some way at least, to find obstacles lying in the way of that life; to be prevented from participating fully; to be excluded from decisions that affect our lives; to be spoken about in a certain way – not by our own choosing, but because that’s what’s happened and, worse, been endured for far too long.

These are the expectations that we want to leave behind for good.  We have a major opportunity now to come together at a landmark occasion for people with disabilities in Ireland, the First Assembly, to begin that journey.  On 4th May, we want you to join us in the International Arena in Athlone in the first major national gathering of its kind - the first in a trilogy - a unique and enlivening event to explore our rights and to reawaken a collective energy in the disability community. 

The day will represent a vibrant, defining moment to incite a new drive for positive change, one that provokes a strong and renewed solidarity among us as, into the future, we uncover new ways of moving to achieve our rights.  Hundreds of people with disabilities – along with our families, friends and communities – will journey to Athlone from every corner of the country, uniting to celebrate our diversity, reflect on how our rights are understood, and examine liberating ways in which we can act upon them.

The First Assembly is our day and our space to shape our future.  Some of us may come from different backgrounds, live with different disabilities or come across different hurdles in our lives, but, at the core, we are all the same: we are all people whose rights are not being either recognised or realised, and we are the ones who, together, can turn that around. 

This isn't without precedent, of course.  Our team in America - who you can read about more in this issue - have just finished the Selma-Montgomery march. following in the footsteps of the 25,000 people, led by Martin Luther King, who, 50 years ago, secured their voting rights by coming together on that route.  This week, in Washington DC, they're also marking the 25th anniversary of the Capitol Crawl, which saw disability activists abandoning their wheelchairs and mobility aids to climb the steps of the Capitol Building in Washington DC and call for the passing of the influential American with Disabilities Act (ADA).  Those journeys – and the people who embarked on them – made history.  Now, it’s our turn.

The First Assembly will offer powerful personal testimonies from people with disabilities on how they found their voices and built the confidence to move towards change.  Human rights activists will share their experiences and understandings, not only of the current rights situation but the opportunities there to progress it.  And proposals for future actions and initiatives to strengthen the voice and leadership of people with disabilities in civil society will be put forward and discussed.  The day will empower us to not only explore our understanding of our rights and to recognize them as our own, but to forge the solidarity and motivation to actually accomplish them.

We'll witness the power of community and embrace new creative moments together, celebrating our strengths and capacity, and creating a culture of inquiry and empowerment.   We promise music, performance, colour, creativity, collaboration, and festivity.  And we promise that this is the first step in a new, equal and inclusive future for us all.

Will you just promise to be there?

Find out more and register for the First Assembly by clicking here.  Registration closes at 5pm on Wednesday, 22nd April.

Image by Salvatore Vuono used with courtesy of freedigitalphotos.net 

Two Hearts Beat as One

Our American adventure is underway


This month marks an important time for us here at ÁT as we not only take to the road,  but cross the seas in an important journey on the path to equality for people with disabilities in Ireland.  We want you to share this moment with us!   

2015 marks the anniversaries of two seminal events in civil rights and disability history which have shaped the way we all live today. 

This year has focussed world attention on the 50th anniversary of the historic Selma-Montgomery march, led by Martin Luther King, which progressed and united the civil rights movement in America, and it also celebrates 25 years since the Capitol Crawl in Washington DC, which saw disability activists abandoning their wheelchairs and mobility aids to climb the steps of the Capitol Building to demand and ultimately secure the passing of the influential Americans with Disabilities Act (ADA).

These two events – both of them journeys which changed the course of history – form the heart of our latest adventure here at ÁT.  I - accompanied by my team of Personal Assistants (PAs), our Communications Officer, Orlaith Grehan, and our collaborator, Niall O’Baoill - have set off for American shores in our ‘Two Hearts Beat as One’ endeavour.  In a month-long, powerfully symbolic journey designed to connect with the key leaders and locations associated with these remarkable moments in time, we are honouring the initiative and resilience of those who stood up – and continue to stand up – for full equality and human rights.

This is a hugely important journey for us, and – yes, to use an old cliché – a bit of a once-in-a-lifetime opportunity.  Arriving in New York, we've travelled down to Washington DC and on to Atlanta, Georgia, where we visited the Martin Luther King Center, met with disability activist Mark Johnson, and engaged with the National Center for Civil and Human Rights. 

Moving on to Selma, Alabama from there, we commemorated the pivotal march to Montgomery by undertaking the full 50-mile length of the walk ourselves, arriving at the State Capitol building on April 4th to mark the anniversary of Martin Luther King . 

This week, as you're reading these words, in fact, we're winding our way back to New York, stopping off again in Washington DC to meet with the influential disability activists, Judith Heumann, to deliver a series of presentations to different groups, and to mark those 25 years since the ADA came in.  

Why this journey?  Well, it’s been a long-held ambition of mine to pay respect to the courage and sacrifices of the people who inspired and motivated not only me personally, but the whole Independent Living (IL) movement here in Ireland.  We have learned a lot from our Stateside peers, and we hope to celebrate the mutual admiration and deep bonds which loop between the rights movements in both of our countries.

More than that though, we want to raise awareness and support for a new, emerging movement for people with disabilities here in Ireland.  We will echo and commend the values and experiences we come across in our journey in the inaugural First Assembly event at the International Athletics Arena in Athlone on 4th May – which I hope you’ve read more about in this newsletter already!  On that day, you will see hundreds of people with disabilities joining with their families, friends and communities to make their own journey, and demand their civil and human rights. 

What we’re doing is exciting: we’re looking to those who generated their moments in time so that we can create one of our own.  Come with us on this journey and share in it: follow all the action over on Facebook and Twitter, and keep an eye on Youtube to see all that we get up to.

This journey is about more than us who are embarking on it: it’s about respecting our shared values, revealing our visions, realising our rights, and inciting positive change.  It’s about tying our past and present together to shape a new and better future for us all.

Martin Naughton
Director of ÁT 
 

Support our journey for equality!

Let's dream bigger and better together


We need your support to make the First Assembly and all the initiatives that spring from it a success!  Please help us create a better future for us all with a €5 donation - find out more by clicking here.

Claim your voice!

Get involved with our newsletter today


Sara Burke is a well-known journalist, broadcaster and health policy analyst.  She stood as the Chair of our Realising Equality through Active Participation event last December, and has written a great endorsement of our newsletter, urging you to get involved and see this as a home for your experiences, ideas and visions.   

There are many basic human rights denied every day to Irish people, particularly to people with disabilities who are often denied the right to live and participate in society, to have control over their own lives.

However, we should not forget that we live in a country where we can say and write what we are thinking; we can share our ideas and dream of a better place without fear of censorship.  We all have the right to participate in the political process.

This is to be cherished.

Many of the progresses made in living conditions, experiences and services for people with disabilities have been brought about by direct action, by protesting, by people with disabilities claiming their voice and using it to effect change.

There is nothing more powerful than the powerless taking their power and using their experience to influence how human rights can be valued and not denied, how money is spent, what type of services are provided, how disablers can become enablers.

In the words of Barack Obama, "we lose ourselves when we compromise the very ideals that we fight to defend.  And we honour those ideals by upholding them not when it's easy, but when it is hard".

Effecting change is hard.  It is a long, tough, strategic battle that needs to be fought with dignity.  Sometimes, there are real opportunities to skew that long road for the better.  And this can only happen where there is hope, but also where people come together and claim their voice.

I have had the privilege of chairing two conferences of ÁT, one in 2011 and one last December.  At both of these events, people with disabilities have shared powerful testimonies of their lived experience, their challenges and their social entrepreneurial skills that enables them to live ordinary lives, just like everyone else.

This newsletter from ÁT is an opportunity to be a home to host the lived experiences, hopes and dreams of people with disabilities, to challenge orthodoxies and to be an agent for change by bringing people with disabilities together to voice their visions for the change that is needed.

I look forward to reading your stories and watching the change that you make, happen! 

Sara Burke    

Image by Jesadorphn used with courtesy of freedigitalphotos.net 

Ending the small talk

Let's talk about our language


Language is obviously a hugely important communication tool, but, at the same time, it’s much more than that.  It shapes how we see the world, not only building perceptions of groups in society but often characterising how those groups think of themselves.

In this new series, we want to discuss what language means to you and why transforming the language we use around disability could make a massive difference.
 

There’s an old saying that you probably heard – or perhaps shouted yourself – from across the school playground: “sticks and stones may break my bones, but words will never hurt me”.  It might be a bit of a roll-the-eye cliché by now, but it shows that, from a very young age, we’re almost indoctrinated to ignore the terms, expressions and even taunts that offend or demean us.

But is merely overlooking and trying to disregard the insults and derogatory labels good enough any more?  

If you hear something said about yourself often enough, even on a sub-conscious level, you can begin to absorb it and believe it to be true.  When it comes to disability, the language used around it paints a different reality to the one I suspect we all live. 

“Vulnerable people”.  “Invalids”.  “Wheelchair-bound”.  “Special needs”.  Us?  We don’t think so.

This isn’t who we are.  None of us want to be confined or defined within such narrow parameters.  These expressions see our disability first, and sometimes even see our disability alone.  They don’t begin to touch on us as people, with all the same interests, ambitions and personality traits – good and bad, let’s be honest – as everyone else.

People, however - including, sadly, ourselves -  usually throw these phrases around not because they intend to hurt us, but because these are what they’re used to hearing.  We may not realise that every time we hear ourselves called “vulnerable”, that devalues us a little bit more.  We are, in fact, the opposite of vulnerable, given how strongly we continuously fight to succeed in a society that doesn’t always make that easy, and the language we use needs to properly reflect that.

This isn’t an exercise in political correctness.  It’s about recognizing and no longer accepting or ignoring what demeans us.  We can reclaim who we are through language, and even simple changes can make a big impression. 

Are you happy to be described as someone who needs to be “mainstreamed”, for example, when that word suggests that you’re discounted and isolated to begin with?  No sir, not for us.

Think about any language around disability which upsets or irritates you: it might not be instantly obvious, but you’ll probably be surprised with how much you come up with.  This series is all about sharing these phrases and discussing the alternatives, making change happen for ourselves.

Using the wrong language leaves no visible scars and we may not even feel the injury immediately, but, over time, it inflicts a nasty wound.  Let’s think about how we can heal it.

If language bears an impact on you, why not tell us what language you want to see transformed, and why it makes a difference to you.  Send your stories and opinions to Orlaith at orlaith@theatnetwork.com so that we can share them here and kick-start this important move for change.

Image by digitalart used with courtesy of freedigitalphotos.net 

See all the action from our December event

New videos of REAP14 released


Miss our Realising Equality through Active Participation (REAP14) event last December?

Never fear!  You can catch up on all of the action by watching through our new video playlist of the day.  The event examined the history of Independent Living for people with disabilities in Ireland, exploring our model of Direct Payments and the difference that it makes in people's lives. 

Click here to find out more about our speakers and watch their presentations.

Meet the Á-Team

Introducing the people behind ÁT


In each newsletter, we're going to introduce the people and faces behind our team. This month, say hello to Marian!  She's our Research and Programme Coordinator, and tells us a little about her role here.  

Hi, I'm Marian, and I'm the Research and Programme Coordinator here at ÁT.  I studied Sociology in university, and fell into the disability sector through a brilliant internship with the Disability Federation of Ireland (DFI) as an International and European Affairs Assistant.  After my internship, I started working in ÁT, and I will be celebrating my first birthday here very soon!

In my role, I carry out continuous action research and I’m working on developing an evidence base for our Direct Payments model.  The coordinator side involves driving our work plan by managing personal projects and coordinating the work of my colleagues.  I make sure that output is accurate, concise and underpinned by ÁT’s guiding principles – equality, human rights of people with disabilities and the philosophy of Independent Living.
 
ÁT is an open and supportive work environment, and there’s a strong sense of fellowship.  Although our hands are full with endless stacks of work – and ideas – we enjoy great autonomy and there’s always space for creativity.  The boss throws many an inspirational stock phrase and seán-fhocal our way.  While his meaning is conveyed in a colourful way, we like to respond with good-natured teasing!

It’s interesting working in ÁT because we’re the only organisation facilitating Direct Payments in Ireland, so we’re trying to promote an idea that’s innovative and transformative.  Our work is driven by values – equality, human rights  empowerment, solidarity  – and I enjoy playing my part in translating these values to practice though the ongoing development of our model.  I also like ÁT’s approach: promoting structural and cultural change while also embracing a grassroots approach.  We think big but everything comes back to the individual.

Solidarity. Empowerment. Belief. Vision.  These are the challenges I see for us and the disability sector into the future.

Want to get in touch with Marian?  Just email marian@theatnetwork.com or call our office on 01 525 0707.

What's happening?

Looking at what's going on in our sector


We use this space to highlight some of the news and events going on in the disability sector both here and abroad.  If your organisation has anything you'd like to share, just let us know by emailing Orlaith at orlaith@theatnetwork.com, and we'll include as much as we can in each issue.

Just click on the links below for more!

 

News

Events


Image by Jesadorphn used with courtesy of freedigitalphotos.net

Best of the web 

Our time online


In each issue, we choose some of the best disability-read, sites and apps that we've come across over the past few weeks.  If you have any favourites or suggestions of your own, we'd love to hear from you!

Just click on the links below for more!
  • Be My Eyes: this app links blind and visually-impaired people with volunteers across the globe through live video chat, empowering people to live with more independence and freedom.
  • Disability Horizons: this disability lifestyle magazine sources all of its content from its reader community, covering everything from relationships, employment, travel, technology and a whole lot more!
  • "Finnish punk band with a difference takes a punt at Eurovision title": punk band PKN live with intellectual disability, and have been chosen to represent their country, Finland, at this year's Eurovision - a great step forward for inclusion!
  • "I won't lie: there are tears in my eyes...": Brendan O'Connor's very honest piece about his daughter who lives with Down Syndrome sparked new conversations about the allocation of education resource hours to children with disabilities.
  • "Wheelchair versus escalator": sometimes the most simple solutions are the best!  We want to see this video played out in real life!
  • "Voluntary sector a reminder we live in a society, not an economy": Senator David Norris wrote this powerful piece to mark the Carmichael Centre's 25th birthday.  More than 40 charities based in the Centre marched through Dublin on 4th March to celebrate the day!

Image by photoraidz used with courtesy of freedigitalphotos.net

A tribute to Tom Chambers


All of us at ÁT would like to pay tribute to Tom Chambers, a strong disability activist and proud Mayo man, who passed away in January. Tom was a very active and well-respected campaigner on accessibility and disability issues down through the years.
    
Hailing from Newport, Tom was often to be seen in Leinster House or at the gates of the European Parliament to lend his voice to the push for change.  Tom used a wheelchair himself, after acquiring a spinal cord injury in a car accident in the early 1980s.

Director of ÁT, Martin Naughton, shared a few stories about Tom, who was a familiar face at the Strasbourg Freedom Drives.  The Freedom Drive is a lobbying campaign held every two years by people with disabilities from across Europe, aiming to bring issues of disability, equal rights and inclusion to their national members of the European Parliament.

“As well as giving his heart and soul on the days that he was over there”, Martin told, “Tom always made the journey interesting for himself.  One year, he raced a fellow from Sligo to Strasbourg, with Tom travelling by rail – including through the Channel Tunnel – and the other man going by plane.  Part of the challenge was to see who lost the most luggage or came away with more funny stories.  I’d say the only thing Tom lost was sleep; he certainly had the most fun.  That was the kind of man he was; he’d take in all of those little things and they would be just as important to him”.

Martin recalled how, even when he away from home, Tom was never too far from his Mayo jersey.  “He wore his colours everywhere: not just on his sleeves or his heart, but on his wheels and everywhere else as well.  Tom was a continuous presence and will be sorely missed at the Freedom Drive this year, which is taking place in Brussels for the first time.  I wonder what advice he would be giving us for it now!”.

Tom lived independently in his home in Newport, and was a keen supporter of the Mayo football team.  He also took part in a monthly Self Defence Programme, which shared Jeet Kune Do techniques to people living with a spinal cord injury.

Tom passed away in the National Rehabilitation Hospital in Dún Laoghaire in early January, at the age of 69.

May he rest in peace.

----
An obituary for Tom Chambers featured in the Mayo News on 13th January.  To read the article, please click here.  

Remembering Michael Weblin


Niall O'Baoill remembers his friend Michael Weblin, who sadly passed away in December 2014, recalling a quiet man with a smiling face, full of mystery and courage.   

The mind's eye rapidly conjures up a bright blue-eyed, mild-mannered boy with blond hair and a broad smile.  An archetypal handsome, energetic nine year old who, though often short on words, always succeeded in extending interest and friendship to those around him.
 
Like many other children destined to be reared within the walls of an institution, he was bereft of a known history or family that one could acknowledge, inquire into or engage with in any purposeful way.
 
And so, in that sense, Michael was distinct in his difference - a somewhat solitary being whose sense of self and future would always lack the type of identity, attention and affection one usually associates with growing confidently from childhood, into adolescence and beyond.
 
Aloneness and anonymity can cut two ways though - its downside is familiar to most - but there is often another fascinating aspect, where solitude generates qualities and instincts - rare in this world - through which a unique sensitivity and intelligence emerges.
 
Michael possessed a private manner of being, a little difficult to characterise or express adequately, but exemplified in the main by a patient, quiet dignity with no overt sense of demand or expectation, which pervaded all aspects of his personality and circumstances; one could call it a natural grace.
 
In that sense – as with his life long companion Paddy Cullen - he resembled more an old soul, content to observe the world at once remove, as though winking at its speed and excesses, and wisely choosing to be otherwise.
 
This easy-going nature or nonchalance was often disconcerting, as Michael’s formal education and work life was impoverished and there was always a residual sense of a potential lost or unrealised.  That said, on his own terms, and where practicable, Michael was capable of an eagerness and excellence that was both impressive and infectious.
 
He will be remembered as a type of a ‘golden boy’ with a curious, shy vulnerability that persisted throughout his relatively short life, but also as a man that signalled much about the essential compassion and beauty of the human spirit.  He had a wry sense of humour and, in an unspoken way, would no doubt delight at the best efforts of anyone trying to describe or put him into a familiar box.
 
For he was anything but familiar - he was a rarity, a natural born loner and, for many people like myself (forty years on from first encountering his smiling countenance and vitality), an opportunity now exists to salute his mystery and courage.
 
Michael inscribed himself into the hearts of many people, neighbours and particular friends in the wider community of Baldoyle, where he lived most of his life, and this felt memory will therefore remain an indelible source of wonder that no headstone or epitaph could ever hope to contain.
Michael’s friend, and our Director here at ÁT, Martin Naughton, added a few words.
 
“Since Michael first moved to Baldoyle, he had many friends.  At different times he showed great leadership, of both a creative and daring nature.  Many of us were lifelong friends of Michael, particular his housemate Paddy Cullen, and Pat, Tony, Adrian and of course Mr Connolly, his regular visitors for computer golf games.  They gave tremendous peer support and genuine friendship, comparable to any group of golfers.  As Michael would often say, he didn’t have to endure the wind or the rain to play his game”.
 
“I recall particularly Michael’s creativity on the dancefloor, as he would do a series of wheelies and other daring stunts.  I remember one night at the Glasgow Celtic football dance in Dublin, with many of the players over, when, out of the blue, Michael took over the floor.  The players and all the other men applauded while women hopped in to partner and dance with him.  I’m not even going to talk about all his wonderful achievements in the world of sports; at least, not today”.
 
“Thank you for the days and nights. May your true spirit continue on”. 

Image by Voraorn used with courtesy of freedigitalphotos.net 

See you next time!


We really hope that you've enjoyed our newsletter, and even more so that you'll get involved with it into the future, sending us your stories, photos, videos or whatever means you want to tell of your experiences!

Of course, as part of this, we want this newsletter to be completely accessible to everyone.  We realise that there are so many considerations to take into account, and it's really important to us that we follow each one through.  For instance, we've been following guidelines from the National Council for the Blind (NCBI) to look at our visual accessibility and from the National Adult Learning Agency (NALA) to discover more about writing in Plain English.  

We're sure there are many improvements for us to make, and, while we're sorry that they're there, we do promise to do everything we can to change them.  If you come across any problems in accessing this newsletter or if you have any suggestions on how we can make it easier to read, we'd be so happy for you to let us know!

Please feel free to email Orlaith at orlaith@theatnetwork.com or call her on 086 183 1502 at any time, and we'll work to ensure real and open accessibility!
Copyright © 2015 Áiseanna Tacaíochta, All rights reserved.


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