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Let's hear it for the drivers, the cooks, the bucket shakers, and note takers.
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Founder of Invisible Disability Ireland
Emily Larkin, founder of Invisible Disability Ireland is raising awareness for those with invisible disabilities. Three years ago, Emily set out to destigmatize disability and change the narrative.
“Since 2019 it's been all about promoting invisible disabilities because our perception of disability can be narrow minded. Generally, when we think of disability we imagine a person in a wheelchair, but it's not representative of the entire community. Only 8% of people with disabilities are wheelchair users, so the remainder of people maybe don't feel included.”
About 80% of all disabilities are invisible, and can hinder a person’s efforts to go to school, work, socialise, and more. Conditions like autism, dyslexia, fibromyalgia and rheumatoid arthritis, are a few examples.
“The work I do is to change the narrative around disability and say ‘yes, that's what some disabilities are like, but this is also what disability looks like to people’. So, it's about making the invisible visible.
About a year ago, I started to think about people with invisible disabilities and the difficulty accessing transport. I used to commute into town for college and I would be standing, sometimes for an hour, into town. I have rheumatoid arthritis and fibromyalgia and it was horrendous, but because I looked young and I looked healthy, naturally and understandably, no one would offer me a seat. So, I emailed TFI. I felt that people with invisible disabilities needed access to the resources they're entitled to.
I emailed TFI and they were immediately on board. We went into a consultation process and I worked with their Accessibility Officer to create the campaign you may now see on our buses, on the Luas, all over. We thought about what it would look like and what message we wanted to convey and then we shot the campaign and launched it last month.
Already we’ve had hundreds of badges picked up. I've spoken to a few people who said they've used it, and they’ve had amazing feedback. The campaign is due to last for eight weeks and then the hope is people feel empowered to use the ‘Please Offer Me a Seat’ badge.
It all came about because of one email. It's so amazing for me to see how open-minded people are and just willing to help out in in ways they can.”
"The work I do is to change the narrative around disability...it's about making the invisible visible."
Paul Blake Knox
"I’d never met anyone in Direct Provision before and I was never likely to. I live in middle class Dublin 14, I’m 68 and here I am meeting all these new, lovely, inspiring people, both runners from the immigrant community and the Irish runners too.
I’ve always been involved in different things. I did hockey coaching, I took part in a Cycle Against Suicide, I’d done park runs for the Simon Community, and I was a ‘befriender’ with Spirasi - they work with immigrants who have suffered from torture. It was through that, that I came across the Sanctuary Runners on Twitter. They run with people in Direct Provision and I thought it was a lovely idea. It tied in for me as I had just retired.
They were so welcoming. I went along to Poolbeg Park in Sandymount one week, they gave me a tshirt, and that was it - I was a Sanctuary Runner. The runners were based in the Direct Provision Centre in Hatch Street, then they all got a letter to say that it was closing, and they were all moved out to Balseskin almost overnight. The nearest park run for there is Poppintree Park in Ballymun.
So it was either I stay in Sandymount running on my own or I go out to Poppintree. There was no question, now I drive across the city every Saturday. There might be 25 or 30 people each week.
People who live locally bring cakes, biscuits and tea and coffee, and at the end of the run, they lay out a beautiful big mat and we all get together and chat.
There were fallacies I’d have had around immigrants, but they’re so far from the truth. When you’re running with someone over time, you talk to each other, and they’ll say, all they want to do is work and give their children a good education.
It’s opened my mind. When you think about the history of Ireland, people were forced to leave, we went to England, America, Australia. Leaving for desperate reasons, just wanting to improve their lives. These people are in the exact same boat. There are groups of Sanctuary Runners all over the country - if you’re thinking about joining, do it immediately - you’ll be nothing but welcomed."
"I'm 68 and here I am meeting all these new, lovely and inspiring people"
Joanne Allen Dunphy
Volunteer & Trustee
Joanne Dunphy Allen is what we like to call a ‘multi-hat wearer’. She’s a business owner, a mother, and a fan of community theatre. She’s also the National Secretary of the Irish Countrywomen’s Association, a trustee of Mountshannon Community Council, she’s a volunteer coordinator with Missionvale Ireland, she helps out with East Clare Text Alert and is a representative with the Team Hope Christmas Shoebox Appeal – all as a volunteer.
It is a balancing act, dividing myself into halves or quarters, but while I’m in the role for the particular charity or organisation, I give it 100% there and then, whether it’s ICA or Missionvale or Mountshannon.
The role that I’ve most recently come to was when I was elected as the National Secretary of the Irish Countrywoman’s Association. The role has been varied, I attend meetings and functions around the country, I’m involved in strategy and policies, and I would be the contact for all the secretaries or presidents of Federations, which are the county levels of the ICA - I like to be open and available to all people.
The ICA has been around since 1910, and it has had a huge impact on people’s lives. You wouldn’t have running water or possibly even electricity in your houses if it wasn’t for the ICA.
The impact nowadays is very much about friendship and a support network to ourselves and communities. For me, personally, in my Guild, which is Scariff in County Clare, I found myself.
In the ICA, I found that people were willing to listen, and hear what I had to say, and I was willing to listen and hear what other people had to say. We learn other points of view, skills, crafts, invite speakers in and have lots of fun.
With the Community Council in Mountshannon, I’m coming up close to finishing my four-year term as a director. We manage the Community Childcare, a Community Employment Scheme, we had a Covid response team, the Tidy Towns, we maintain a community park and a playground. And we work closely with local community, groups, government bodies and the local county council helping to support and assist our community.
Not everyone has the time to be a director of a CE scheme, but even if it’s picking up rubbish, or sweeping outside your house, it’s about giving back to your community in whatever small way you can.
Read the full story here.
"I don't do it for the thank yous. I don't do it for the gold stars. I do it to give back."
Volunteer, RNLI Lough Derg
We moved to Dromineer in 2020. My neighbour Eleanor mentioned she was involved in the RNLI on Lough Derg and it sounded exciting. I thought it would be a great adventure combined with something meaningful.
I felt I hadn’t been doing enough to give back to society and now would be a good time. I’m a full time graphic designer in Nenagh and I have a small boy. He takes priority now, but I know as he’s more grown up, I’ll have more time to be more involved. This is just the beginning of my journey.
At the moment, training on the boat is twice a week, we go on the lake and do different training exercises, it’s all really stimulating and hands on. It can be physical, some nights are very cold, and very choppy on the lake, you have the elements coming at you, so it helps to be fit, but it's not main thing. Likewise, it helps if you feel comfortable in the water, but the equipment that we wear means you’re fully protected from drowning.
From my next assessment, I’ll be able to put myself available for shouts. The decision is made who participates in each shout, depending on the circumstances, whether they need a more experienced crew. I have been on one shout so far, it was my first ever training session on the boat and we were called, there was a boat with engine failure. I felt a bit like a spare wheel, but you can’t fast forward your training. It still felt good to be a part of it.
Over the summer, when the evenings are longer, you can see the boat from our house, my son loves going to the station and seeing the boat. When he plays with his toys, I hear him saying, ‘This is the RNLI rescue boat’. There’s a lovely community around RNLI, a lot of families involved, they’ve been really welcoming.
I can’t express how much fondness I have for the women I’ve met the RNLI, they’re great fun, they’ve such loving attitudes and such capacity to help. It’s great to move to a new place and find yourself in the middle of such lovely people who rely on each other so much.
"I thought it would be a great adventure combined with something meaningful."
"If you can work in a job where you’re making other people happy, isn’t that magic?"
Community Fundraising and Events Manager,
My story is probably not ‘normal’ in terms of career path – it was perhaps as much guided by the universe, as by me. I am the Community Fundraising and Events Manager at Barretstown; I began there three weeks before Covid hit in 2020.
But years before that, I was an architect. I lost my job when the construction industry crash happened and within a year or two, my mother was diagnosed with Alzheimer’s. So in order to stay in Ireland and care for her at home, I had to reinvent my career a little bit. The journey of caring for someone who has a serious illness, affected me, in terms of personal growth, and what I wanted to do with my life. I’d always done event management as a hobby, a lot of events in aid of a charities, so I thought about how I could turn that hobby into a career.
Two friends separately told me about Barretstown. I started learning about Barretstown’s ethos of empowerment and connecting children and people that are going through a really tough journey in life, and it resonated with me because of the journey I was on with my mum.
I’d done some volunteer management before for music festivals, and they suggested me as a potential volunteer coordinator for Barretstown’s new event at the time, the Dublin Mountains Challenge; a role which I ended up doing for the last seven or eight years. I got to know the staff, and when a job opening came up, the person who was leaving suggested I apply.
There are no typical days in my role. It’s planning ahead for our own events and supporting people who are participating in other events – from people running the Mini Marathon for Barretstown or the amazing young people who do everything from haircuts or bake sales, all the way up to sports clubs or community groups who take on bigger fundraisers for us.
It’s a lot of listening and a lot of thanking, which I’m wired for! The fact that that’s incorporated into my job is a wonderful thing. It’s a daily reminder of why I changed career paths.
As a human being, job satisfaction is what drives you. To be able to know that I am giving something positive back into society through what I do Monday to Friday – sometimes Monday to Sunday! – that's extremely rewarding. Life is short, be happy, and if you can work in a job where you’re making other people happy, isn’t that magic?
Joanne Quinn aka Dr Fluffy Toes
Clown Doctor, Aoife's Clown Doctors
When I first heard about Aoife’s Clown Doctors. I just thought, ‘This is magic, I need to be part of this’. And now I’ve been doing it about 10 years.
All of us are trained actors or performers and it’s just a lovely way of using our talents and our love of performing for the greater good. We want to be able to spread smiles and cheer to as many people who need it as possible.
Aoife’s Clown Doctors works in Crumlin Children’s Hospital, Temple Street, and most recently in Galway. We go around to the beds or waiting rooms and we’re something new and different. We’re a distraction. We’re not the regular anaesthetist or nurse, we’re not bringing injections or medicine. We get to say, ‘Let’s have fun for five minutes, let’s change this whole atmosphere up and play.’
It’s a very special job but it isn’t suitable for everybody. You need to be able to be able to park your own problems from that day and give everything for every child and every family you meet. Improv is hugely important because you’re thinking on the spot, you’ve got a new audience every 10 minutes at each different bed or ward.
We get as much fun out of each other as the kids do. We have such good banter and fun with the patients, the parents, families and with the other clown doctors. At times even the staff join in with the fun and the energy in the ward lifts. Maybe it’s only for two minutes but we know that those two minutes go a long way when you’re dealing with the issues that arise in a children’s hospital.
No day is easy for families in there but we try our best to lift the spirits and we know from feedback and the smiles on their faces that they love to see us coming around.
We may arrive in white coats but our ones are coloured with space ships, rockets, spirals, rainbows and lots of fun things for the kids to look at and our job is not to take blood or ask them to be brave. We’re there to bring cheer and fun to their day.
It’s an amazing charity to be involved with and we’re so grateful for all of the funding we’ve received so far. From the hair growing to the hair waxing - we love it all!
"We’re not bringing injections or medicine. We get to say:
Let’s have fun."
"It’s an absolute privilege to work with somebody who is opening up and giving their trust to you."
Victim and Survivor Support Volunteer,
Dublin Rape Crisis Centre
Court is a very, very daunting place to be for anybody, particularly a victim or survivor. But we are there and we can guide them through it - they can just concentrate on giving their evidence and being in that moment. My role at the Dublin Rape Crisis Centre is to attend and support victims or survivors of sexual abuse in court for a trial, at a Garda station or at a SATU (Sexual Assault Treatment Unit).
I’ve been a volunteer since 2010. I was working with an independent community law centre, and I’d always been very aware of issues, particularly gender-based violence issues, and I admired the Rape Crisis Centre and the work they did. So I decided, when I had time, I’d volunteer. When I first started with the centre, I’d do four shifts a month on the helpline, and two in the SATU, then I got the opportunity to do training for Garda stations and in the courts.
One of the big issues with being in court or being in a Garda station is that victims or survivors can often be re-traumatised as they’re relaying their story back. We are there to support them emotionally and psychologically. We don’t interfere in any way, but the victim or survivor knows that you have their back.
You never get desensitised to it, but I can leave it behind me. We have to do quite extensive training before we can become a volunteer and there’s huge support, there’s always somebody that you can ring and talk things through.
The most important skill you need is the ability to listen. And to not try to solve the problem. Because you’re not going to solve it, and you’re not there to solve it. You’re there as an emotional and psychological support.
It’s an absolute privilege to work with somebody who is opening up and giving their trust to you. I’m always astounded by the courage and determination of victims and survivors; it never ceases to amaze me. And it’s so rewarding to know that you’ve helped them.
Activist and Board Member, TENI
Activism is very important, it highlights issues that people otherwise might not be aware of. People marching on streets, writing letters to TDs, these are the things that move us along as a society. It can be an exhausting job, it’s not an easy thing to change society – it's a long, drawn-out process.
I’m on the board of directors at TENI, the Transgender Equality Network Ireland. We advocate for the trans and non-binary community in Ireland. Our aim is to make Ireland an equal society for all people, all trans people, all non-binary people, regardless of how they present or what their gender identity is.
I was actually co-opted onto the board! I had been something of a trans activist, I had written a few articles and done a few interviews and Sara Phillips who is the chair of TENI approached me. TENI was an organisation that I admired, so I was flattered to be asked.
It’s important that the board is diverse and that it reflects and represents the voices of the community that we serve. There are trans people on the board, there are non-binary people on the board, and there is a cis gender person on the board who is the mother of a trans person. It’s only by hearing from voices from a wide variety of perspectives that we can grow and become stronger as an organisation.
For those interested in activism, you have to find a cause that you believe in. Often that’s a cause that’s very personal to you. Just being a visible trans person is an activist role in and of itself. That’s what got me involved in activism, when I came out as trans, and when I saw the inequalities in the system. The things that other people take for granted, in terms of access to healthcare, in terms of jobs, the trans community is vastly over-represented in terms of people who are homeless and people who are unemployed. And you see that inequality in society and think, "I want to do something about it, and get my voice heard and get trans voices heard".
"You see inequality in society and think: I want to do something about it."
"I don’t know a lot of people in Ireland so it’s been a really nice place for me to connect."
Volunteer Receptionist, Mayo Hospice
I moved to Ireland last May, I’m far away from my family, and travel has been restricted, so my time is best served at the hospice. It’s better than lying at home watching a movie. It’s nice for me to go in and connect. There are many benefits to volunteering, especially over the last while, when everyone has been so isolated. You can go out, meet people and have a purpose.
Giving back is an important part of any community which is why I think it’s important to give time to those who need it. And being part of an organisation like the hospice, you can easily fit into where they need you. If you take something like covering the reception area or cleaning the bathrooms or whatever it is you do, it’s so important because it helps the organisation help those in need. Those that you might not be specifically able to help, you’re still helping.
I have first-hand experience of what it feels like to be in need from certain parts of my life, there’s a lot of reasons why people might not always be able to help themselves, it’s not always financial. It’s a very sad situation when people come into contact with the hospice, but they’re fortunate enough to have such a place there to support them. I think people are very aware of what the hospice does for the community, it makes a big difference.
I’m an assistant psychologist and that’s initially what I wanted to help with at the hospice, counselling or bereavement support. The only spaces they had available for volunteering was reception and I’m happy to do it. I don’t know a lot of people in Ireland so it’s been a really nice place for me to connect with people and have a bit of my social needs met. Seeing what other people are going through always puts things into perspective.
I think people want to volunteer but don’t always know where to go or how to do it. Everyone has a need for that exchange, to do something good and to know what they’re helping. Contact your local volunteer centre, whatever time you have to give - even if it’s just an hour a month, if ten people do that, they have ten hours.”
Textline Volunteer, 50808
Our primary role is to listen and help a texter feel heard. Our priority is their safety, first and foremost, and then it’s really listening non-judgementally, and giving support where we can.
You can do it from anywhere, so if I’m back at home with my family, I get endless cups of tea handed into me, so it’s a nice set up! It’s extremely fulfilling, and it’s really special to spend an evening feeling like you’re having a positive impact on other people.
You hear such lovely things from texters about how grateful they are and that’s a gorgeous feeling. People say things like, “It’s really helped to get that off my chest, that made me feel so much better.” and you feel really privileged to be in that situation.
As a person I’ve learned incredible new skills from volunteering with 50808. We are all fundamentally empathetic people, but we don’t always know how to project that, and carry it through in our conversations and our relationships. I think the listening skills that I have learned have made me a better person. They’ve changed my relationships and my life, I think I’m a better friend, I’m a better sibling.
You get an appreciation about how complex life can be, and how different people’s lives are to yours. But you also realise that a lot of people are going through the same stuff and the emotions we all feel, are the same.
You might feel alone, but you aren’t truly alone - and I think that’s a really beautiful thing to be reminded of.
"The listening skills that I have learned have made me a better person."
"It’s all about creating change that has a meaningful impact on people’s lives"
Advocacy & Policy Manager, DEBRA Ireland
My favourite part of my job is engaging with so many different people, particularly families. That’s the most important part, because all our advocacy is founded in that lived experience.
EB a rare skin condition. It makes skin so fragile that even gentle contact can cause painful blistering, open wounds and sores. When a family hasn’t heard of a condition, and they receive a diagnosis, it can be extremely lonely and isolating for them. This is why it’s so vital that there are organisations, like DEBRA Ireland, so that families can receive the practical and emotional support they need. At DEBRA we can also provide opportunities for peer support, which is so important for people, especially in the rare disease space.
We work with families to advocate for the right services and supports at the right time. We engage with policy makers, the Department of Health and the HSE, political representatives - all aimed at improving the services that people have access to. One of the reasons I love working in advocacy is that it’s so varied.
Advocacy to me is so important, because it’s all about raising awareness and creating change that has a meaningful impact on people’s lives. Direct family support and research are essential, particularly in rare disease where there aren’t as many treatments available, and advocacy sits alongside that. Ultimately the aim of advocacy is to improve people’s day to day lives, and without advocacy it’s very difficult to create the policy change required to make meaningful change.
One of the things that has struck me is just how many people are living with a rare disease in Ireland. As Rare Diseases Ireland says, “Rare is not rare”. There are around 300,000 people in Ireland living with a rare disease. So even though each rare disease area is small, when you put them together that is a significant number of people affected, and that’s why it’s so important that we all come together through coalitions like Rare Diseases Ireland. They ensure that our voices are heard as a collective group.
Advocacy has to be driven by the voice of the person with the condition and that’s what we aim to do.
General Manager, Purple House Cancer Support, Wicklow
It’s such a privileged position, to be allowed into people's lives, to help them come through the difficulty of living with cancer. It’s something we don’t take for granted.
People come to us at all stages of cancer, we provide both emotional and practical support services. From a personal point of view, I needed a place like Purple House when I was a young boy, through my mother’s illness, and sadly there was none, it didn’t exist.
When I see six and seven year olds bounding up the steps to go into the child therapy room, I think about how we’ve achieved this, that we’re ensuring that no other family is alone - and that I’ve played a part in making that happen, that’s the thing I’m most proud of.
A lot of people say to us, it must be very sad there, but it’s actually quite the opposite. When people are at this stage in their lives, something very special happens. There’s a lot of happiness. People re-evaluate their lives, and as a result, a lot of positivity comes out. As I’m speaking now, there’s a group doing a yoga class, there’s a men’s group meeting, and wherever you are in the building, you hear laughter and people just sharing themselves with other people who are going through the same thing.
We’re very lucky here at Purple House, we get to witness that.
I’m training to be a counsellor as well as my full time job, and through that work now, I’ve realised the importance of self care. I jump into the sea and go for a swim. That feeling of the water rushing over my face just helps me to re-regulate myself. If we’re not in a good place, how can we support other people? It’s something we all have to be mindful of.
"Wherever you are in the building, you hear laughter."
"Niche organisations like ours, have a very important role"
Services & Information Co-ordinator, Polio Survivors Ireland
The most basic thing for people is being understood and validated in their concerns, and what they’re going through. Whatever people have an issue with, we just try our best to help them. We take our lead from the members and what they’re needing support with.
I studied Occupational Therapy (OT) in college, I’m not working as an OT in this role but my training was varied. I’d just qualified and saw an internship with Polio Survivors Ireland. I thought I’d be doing something positive, it was something I could get stuck into, and six months turned into ten years. I’ve been with them all that time.
One of the things for polio survivors is that decades later, they might go on to experience post-polio syndrome. Additional weakness, pain, fatigue, intolerance to cold and the mobility difficulties that come with these things.
Polio is nearly forgotten about in one sense, it’s not a current threat, there’s no new cases in Ireland. When it’s a condition that isn’t widely understood within the general public but also among health professionals, people are looking for that support. So that’s where niche organisations like ours have a very important role. People can approach us and we understand what they’re going through. That’s really important.
We provide a variety of services, from information and advice on any of the challenges they may be facing, to individual advocacy, and we also offer some financial support for things like physio, OT, or for aids and appliances. But sometimes it is just that listening ear and people will say to me, “I needed to just talk to somebody who understands what I’m going through’. We’ve been a constant for people.
We do also have younger members, a lot of whom would have been born in countries where the vaccination wasn’t available when they were children. They’re at a different stage and they’re needs are somewhat different, so we adapt to that too.
My favourite thing about my job is that connection to people. I'm speaking to people all over the country, people I have never met and will potentially never meet, but we have fostered such good relationships that they feel so comfortable with speaking to us, especially when they’re going through confusing and concerning times in their lives. It’s knowing that we’re doing something worthwhile and making a difference for people.
Volunteer Firefighter, Irish Community Air Ambulance, Cork
I’m a retired panel beater and spray painter and I was a first aid instructor with Civil Defence, where I’d had brilliant training in fire fighting, treating casualties, and search and rescue. When I retired, the Air Ambulance came to Rathcool at the right time - and I was delighted to be able to join it, I thought it was a great opportunity to help the community.
The difference the Air Ambulance makes is immense for the people of Munster. You’ve probably heard about the Golden Hour - the first hour after someone getting hurt is the most important, it determines how your casualty will recover. Our helicopter is the fastest civilian Air Ambulance in the world - from the time a call comes in, it’s in the air in three minutes. It can get to Dingle in under 20 minutes. It could land in your back garden. We have an expert crew, both the paramedics and the pilot, they’re top class.
We’re getting a great response from the community because they realise how invaluable it is. It’s all run on donations, people who do marathons, cycles, tractor runs.
For the air ambulance to work, there has to be fire cover at all times. If there’s no fire cover, the air ambulance can’t fly. So we’re important. We stay at the base - the air ambulance has about 650 litres of fuel on board so we have to be there for takeoff and landing. There’s about 12 of us on rota - we haven’t had any incidents so far, thank God. And I haven’t been up in the helicopter - you have to be sick to go up!
When it comes to volunteering, everyone should try and give back something to the community, everyone should help out. Don’t just leave it to others - try and do a bit yourself.
"Don't just leave it to others - try and do a bit yourself."
"I’m amazed at the amount of time, effort and energy people bring, with no financial gain"
Dr Susan Murphy
Chairperson, Oxfam Ireland
When you’re joining a charity board, you’re bringing your skills, your expertise, your knowledge, and your passion - which is a wonderful contribution to make, but you need to make sure that it’s the right organisation for you. You’ve got to make sure you’re fully aligned with the values, strategy and vision of the organisation.
As a person who studies and researches development cooperation and poverty reduction strategies, one of the things I loved about Oxfam was its strategic focus on the drivers of poverty and the drivers of exclusion, and its explicit commitment to the promotion of rights, and the rights of the most marginalised in particular. So it was really a nice alignment in their strategic interests and where I wanted to give my time.
We’re a competency-based board, so we look for all sorts of different skill sets. We have people with brilliant programme skills, fantastic finance skills, people with organisational management, backgrounds in fundraising or digital expertise. A board has a number of responsibilities and we need specific skill sets to ensure that we can fulfil those obligations.
Our board really focuses very heavily on our role as governors in terms of checking, questioning and proposing ways in which things can be done and can be done better. It brings in really fresh insight and different approaches from experts in their field, which I think is really very beneficial for the organisation.
I learn an awful lot from fellow board members as they bring and share their ideas. And I love that about development, it’s so broad and varied, there’s space for everyone. You meet people you possibly wouldn’t encounter in other aspects of your life. We’ve got people on the board from the private sector, former diplomats, from academia and we challenge one another. I’m amazed at the amount of time, effort and energy people bring to the organisation with no financial gain. And we’re coming together with a shared set of values and commitment to the organisation, all willingly, giving some of our time. It’s really, really, really enjoyable.
Clinical Nurse Manager, Saint Joseph's Shankill,
You hear people say, "Oh god, it’s Monday again," but I enjoy coming to work, the week flies by because we’re so busy. On weekends I might pop in just to say hello and have a cup of tea — we’re all like a second family.
I would openly say I cry at least once a day in work, happy tears! You have a moment with somebody, and it’s the reaction you get back, and then tears start coming!
Today, there was a woman in visiting her husband. And this gentleman, he wasn’t really having a whole lot to say, kind of asleep most of the time, and when I went out, he had his arm wrapped around his wife’s shoulder as if they were in the cinema, it was just so cute. It’s little things like that that make my day, seeing the residents at their best, they’re happy and they’re really content.
You could be singing and dancing in one house, you could be making biscuits in another house. It’s a really special place.
"I cry at least once a day in work, happy tears!"
"A lot of our time is banter and a cup of tea."
Chairperson, Ballaghaderreen Men's Shed, Roscommon
You can’t ask men who struggle with mental health issues to go into a health centre in rural Ireland, you haven’t a hope in hell. The big secret to our success from a health and wellbeing perspective is you bring the professionals into the shed. The men, if they’re familiar with the surroundings and they’re familiar with each other, they’ll open up a lot more.
We have a great workshop but we haven’t an awful lot of work that goes on in it! A lot of our time is banter and a cup of tea. On any given night we could have up to 25 or 30 guys in playing cards or playing pool.
At our last AGM I was trying to encourage some of them, so I told them I’d spent the last eight weeks going to a counsellor. After the meeting, one of two of the guys said, “Jesus, aren’t you awfully brave admitting that” and I said, why? I had a problem and I needed it to be fixed. There’s all these misconceptions. Men don’t always want to hear about mental health, they don’t feel it’s for them.
There’s a lot of men who live in Ballaghaderreen that don’t have an awful lot to do because there isn’t a lot to do. They walk around the town all day and either go into the bookies for company or go into the local pub for company, but they’re not drinkers and they’re not gamblers. They’re just missing the people connection.
We wanted to stay connected during Covid so we came up with this concept of townland walks. Each man in our shed had to invite us to his townland, he had to pick the route, and give us a little cultural talk. A lot of guys come into the shed with low self esteem, they prefer not to engage, so we brought the engagement out to them, to spaces they’re familiar with, and it was a huge success.
We had a doctor join us one evening, the men on the walk were able to ask him stuff they’d never dream of asking a doctor, because, he looked like them, he was roughly their age, they were able to relate to him. That’s the beauty of the Men’s Shed.
Chairperson, 22q11 (pictured with daughter, Áine)
“Áine was diagnosed in 1998 when she was 15. They told us she had DiGeorge Syndrome, also known as ‘22q’, which is caused by a deletion of chromosome 22. I knew nothing about chromosomes or genetics and back then, there was no Facebook, no way to connect with other parents, no way to find any information. While the diagnosis did explain everything she had been through, it didn’t give us the answers I was looking for as a parent.
We just muddled along as we always had been. When you live with something it becomes your normal, and you adapt.
A few years after her diagnosis, I packed myself and Áine off to an international conference in France. It blew my mind. They bring together clinicians, families and researchers - no one would look to you blankly and say ‘What is 22q’. I’d come home and I’d cry because there was nothing here. We had to get a support group in Ireland.
We had three Irish families in 2007. I got 80 envelopes, stamped them and put in a flyer about the first conference we were hosting in Ireland. I sent them into Crumlin’s genetics department and asked them if they’d send them to their 22q database. We went from three families to 60 families overnight.
"We went from three families to 60 overnight"
It’s been incredible to have this community of parents. I don’t have to explain my child to them, they know exactly what I’m talking about. It’s the whole thing of lived experience. You cannot know something, unless you’ve lived it. You can see it, you can research it, but if you do not live with it, you do not know what it’s like. And if I was relieved when I met another parent, Áine was so relieved when she met another young person. So we set-up YEEP - Young Experts by Experience Panel.
Next, we decided we had to advocate for integrated care. There are so many different issues with 22q, it’s really important to be able to access the clinically-specific expertise. I just started turning up to things, had meetings with the HSE, at Leinster House – I'm not one for giving up. It’s a slow progression but awareness started to grow. One particular surgeon was championing the cause.
Now, there are two 22q clinics in Dublin – one for children, one for adults, and as of last month a care coordinator went into position - I got to sit on the interview panel with two doctors. I never thought I’d see this happening in my lifetime.
So long of not having what I needed, or what Áine needed, gave me a very clear vision of what was needed. The clinicians have the clinical expertise, we have the lived expertise, it’s only when you put the two together that you get the optimum outcomes. And when you’re prepared to work together and learn from each other, a lot can happen.
We don’t have a fundraising team or a marketing team like a lot of bigger charities would, but we have a vision.”
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