SHINE volunteer raises €1300 for 'Sunflower Week'

Dundalk woman Jane McDermott organised a table quiz in her local pub, Kennedy’s Bar last Friday night (17th April) to raise funds for Spina Bifida Hydrocephalus Ireland’s (SBHI) summer respite programme which she has volunteered on for the past five years.

Having set herself a fundraising target of €1,000, Jane, from the Carrick Road in Dundalk, was overwhelmed with the support she received from her local community in exceeding her goal by raising a total of €1,300.

 

 

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Our Beautiful Minds: National Brain Awareness Week Launch Event

A public information evening - 'Our Beautiful Minds: Our brains and how they shape our lives' - is the launch event for National Brain Awareness Week, March 6th to 12th 2017.

Our lives are shaped by our brains and how they are impacted by challenging events, illnesses and injury and everyday experiences.

This launch event for National Brain Week will be an evening of personal testimony, emerging research and clinical perspectives on the brain and neurological conditions.

 

 

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Derval O'Rourke jumps in to support 24 Marathons, 24 Days

Following on from his ’12 Marathons, 12 Days’ in 2014, when Shane Finn raised €36,000 for Spina Bifida Hydrocephalus Ireland (SBHI), the unstoppable Kerry man is now back with double the distance – a total of 628.8 miles – to conquer!

Shane is set to run 24 marathons in 24 days to raise €100,000 for SBHI: 24-year-old Shane will set off from Donegal on 22nd June and make his way through 24 counties as he covers a marathon a day for 24 days, ending in his home town of Dingle on Sunday, 15th July.

In training for this extraordinary challenge over the last number of months, Shane’s 24 marathon campaign has attracted support from one of Ireland’s most successful track and field athletes, Derval O’Rourke.

The three time Olympian and World 60m Hurdles Champion officially launched ‘24 Marathons, 24 Days’ in the UCC Sports Mardyke Sports arena in her native Cork at noon on Friday, 20th January.

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NAI Events for National Brain Awareness Week 2017

Registration is now open for Neurological Alliance of Ireland (NAI) events for National Brain Awareness Week 2017, taking place from 6th to 12th March.

National Brain Awareness Week takes place each March to raise awareness of the impact of living with a neurological condition.

You can now register for events organised by the Neurological Alliance of Ireland, the national umbrella representing over thirty organisations working with people with neurological conditions and their families.

 To find out more visit http://www.nai.ie/go/brain_awareness_week/news/14-12-2016-check-out-nai-events-for-brain-awareness-week-2017

    

   

 

 

 

   

   

    With warm thanks for your support

    Mags

   


Make Dublin City Accessible to all

Lord Mayor of Dublin, Brendan Carr is launching an initiative to help improve access in and around the City and he needs people who feel that access in Dublin city is an issue to get involved.

People with disabilities who live, work, study or socialise in the city are invited to attend a workshop in the Mansion House on Friday, 27th January.

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Governments urged to intensify efforts to end discrimination

On this International Day of Persons with Disabilities (Saturday, 3rd December) UN Secretary-General, Ban Ki-moon is urging “national and local governments, businesses and all actors in society to intensify efforts to end discrimination”.

The UN Secretary-General is also calling on governments to remove the environmental and attitudinal obstacles that prevent persons with disabilities from enjoying their civil, political, economic, social and cultural rights.  

 

 

 

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#SELFTREE - SBHI's Christmas Campaign 2016

What is a #SELFTREE?

A #SELFTREE is a selfie picture of you and your Christmas tree!

How do I take a #SELFTREE?

Just like a selfie! All you need is a photo of you and your tree taken on your camera or smartphone!

How do I use my #SELFTREE?

You post your #SELFTREE picture to Facebook with the hashtag #selftree

If you also want to donate to SBHI this Christmas, you can simply text SBHI to 50300 

Is there a prize?

YES! The best #SELFTREE posted online between now and 25.12.2016 will received a brand new smartphone!

 

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Changes in the Family Support Work Team

As some of you will already now be aware, Ciara Miley, who has worked as the Family Support Worker in the Dublin and Kildare areas over the past two years, will unfortunately be leaving SBHI to take on a new role with another organisation.

The purpose of this message is to assure all those who have availed of the great support Ciara has offered that we will be working to recruit a replacement for this role as soon as possible.

I am working with Jessica Roche, our Family Support Team Manager, to ensure that the position is advertised and recruited to by early December 2016.

We are keen to ensure that there is minimum disruption to our service in the time between Ciara leaving and her replacement being appointed, in the meantime please contact Jessica at: jroche@sbhi.ie with any specific queries.

We thank you in advance for your patience during this transition period and look forward to introducing you to the new FSW for Dublin and Kildare in the coming weeks.

 

Tom Scott

CEO


Whatever you want to do, just give it a go!

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Mary DeCourcy laughs as she recalls a school sports day many years ago in Scoil Mhuire Gan Smal, Letterkenny, Co. Donegal. It was 1967 and she was 11. She had put her name down for every event and things weren’t going too well in the winning stakes! 

The weakness on her right side and the weight of the caliper she wore to help her to walk caused her to trip and fall down quite a lot.  Sr. Bernardine, the Head Nun intervened. The last race of the day was spud and ruler (same as egg and spoon) and Sr Bernardine decided to give Mary a small advantage. She cut the potato in half and glued it to the wide plastic ruler.

“I’ll murder you if you tell anyone,” Sr. Bernardine threatened with a smile. Mary didn’t win that race either because, she tripped on a sod on the field and fell.  She was laughing so much she could not wrestle the heavy caliper and herself upright.

As a child, Mary spent long periods of time in hospital, and as a result her education suffered. Her father understood the importance of education and got the books she should have been studying in those early years. He set her work to do every day before he went out to work. She was seven years of age before going to primary school for the first time.  Her father had done such a good job she moved up four classes in two days.

She always believed that she had polio, and, it was only following a long search for her medical records, finally released to her under a Freedom of Information request five years ago, that she found out she has Spina Bifida. Tests to rule out Polio were inconclusive so it is possible that she contracted Polio as a child.

“I had been trying to get my medical records for years. In 1977, I had my first hip replacement surgery, and the surgeon, who tried to get my records, was told they were lost or destroyed,” says Mary.

“However, he told me that they were probably not lost or destroyed because it was frowned upon at the at that time to get a second medical opinion.

“To get my medical records under the Freedom of Information was a long process. I cried reading them, not because of the Spina Bifida diagnosis, but because of sets of photos in the records which were taken when I was six and 10 years of age.

“I remember vividly those photos being taken as I was naked and embarrassed.  They brought me back to the mind of the lonely vulnerable child I was then,” she recalls.

Mary was hospitalised for the first time at 18 months and remained in hospital until she was three years of age. In Fact, she spent most of the first ten years of her life in hospital. She required a lot of surgery as both her hips were dislocated and circulation and muscle damage had to be repaired. It was different times then.  Parents could only visit occasionally and children under 16 were not allowed to visit the hospital.

Despite her many surgeries and diagnosed childhood arthritis, Mary has the ability to live her life without her ‘disability’ being a ruling factor. When she was 10 years of age, her mother, Bridie McKendrick died suddenly and Mary, who had been living in Co. Wicklow with her parents and four brothers and one sister, was sent to Letterkenny, Co. Donegal to live with her mother’s family.

“When I was growing up in Donegal, the only disabled person I knew, apart from myself, was an uncle who was deaf and dumb. But I never thought that he had a disability, I just learned sign language to communicate with him,” she says.

When Mary completed her secondary education, she returned to Wicklow town in 1974 and has lived there ever since. She got a job with Wicklow County Council where she had a very enjoyable career.

“When I finished school and started looking for a job, I found it frustrating and humiliating as many interviewees would not give me a chance because of my disability, even though I had a very good Leaving Certificate and a very good secretarial qualification,” recalls Mary.

“This was before the Equality legislation and I am delighted that things have improved greatly since 1974 when I started looking for a job.

“We now have legislation which prevents discrimination on disability grounds - and all the other grounds of discrimination - which gives people looking for a job an even playing field legally.” 

Mary married and had three children: Ray (33); sadly her second son, Shane, was stillborn, and Nicky (29). Mary has two grandchildren, Lisa and Sophie who live with Nicky and his wife Miriam in Austria.

“The proudest moments in my entire life were the births of my children and now my beautiful granddaughters,” she says.

“When my marriage ended I met a wonderful psychotherapist, Jacquie, who with her skill and patience helped me make sense of many challenges in my life. She used crystals and balanced my energy.

“I was fascinated with how I felt, so I studied hard and became a qualified practitioner and I now use Crystals, Colour Therapy, Emotional Freedom Technique and Laughter Yoga to help people.”

She took early retirement from her role as IT Systems Developer Analyst with Wicklow County Council a number of years ago to do this work.

Mary has travelled widely around Europe, Australia and India by herself: by taking the same sensible precautions as any lone tourist and with some careful planning, she says that travelling with a disability is not just possible but enjoyable.

“One of the big threats to my independence for a lot of years was that I drank too much alcohol. I did not realise, because I was having so much fun, that I was putting myself in harm’s way because of my mobility problem,” she says candidly.

“Now I do not drink alcohol while I am travelling as there is no point in putting yourself in harm’s way and I plan my trips to ensure I have assistance at airports etc. 

“All the other precautions I take are the same for any woman travelling alone.”

Mary describes herself as a ‘serial volunteer’, working with many groups as a fundraiser. She is proud of having received the Bronze award from the Royal National Lifeboat Institution (RNLI) for her many years as a volunteer fundraiser. So, becoming Chairperson of the Wicklow Branch of Spina Bifida Hydrocephalus Ireland (SBHI) recently was a natural progression for this ‘serial volunteer’. 

She has also shared her life experiences with SBHI members as a volunteer advocate. Because of her upbeat ‘can do’ attitude to life, Mary was recently contacted by the Disability Federation of Ireland (DFI) to assist in carrying out self-advocacy courses with young people.

So what advice would Mary give to younger people?

“You are a complete person regardless if a part of your body does not work like other people’s. You have gifts that make up for the weaknesses in whatever part of your body - it is only your body that is weak.

“Whatever you want to do, just give it a go and live your life as best you can.  Be kind, loyal and compassionate with others. 

“If you need help coming to terms with your disability, do not be shy, ask for help from your peers, family, and close friends,” she says.

“Do not be ashamed of your disability - we are all here for a reason, you have many talents and you are loved.”


It is never too late to learn how to be independent

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There has ever only been one person with a “major hang up” about Michael Rice’s disability and that is himself. 

31-year-old Michael, who has Spina Bifida, explains that in his experience, people have always perceived him first and his disability is almost an afterthought. 

He has been his own harshest critic as he has spent a lot of his life comparing himself to a standard that he was never going to be able to meet.

“I would keep asking: ‘why can I not kick a football around like my younger brothers, Enda and Simon, and my friends?’ and ‘why can I not do all the things that other children my age are doing?’

“I suppose my hang up was all about the baggage with Spina Bifida and having to deal with that. No one else made an issue of it, it was just something that I found difficult to deal with,” says Michael.

However, a one-week course undertaken during the summer has made Michael realise that he has the inner resources and the impetus to make positive change in his life.

“I went on Spina Bifida Hydrocephalus Ireland’s first ever Independence Week at SHINE and it was absolutely fantastic,” says Michael.

“It was absolutely one of the best things I could ever do because it gave me a better understanding of my Spina Bifida.

“I have always been very routine orientated as routine helps me cope with things. But I was always very hard on myself for being like that, I was pretty much my own worst critic.

“But now I am learning to lighten up on myself – this is something I am still working on. To be honest, I would say that I will always have to work on it but I am making progress.”

Michael, who lives in Carlingford, Co. Louth with his mother Rita, joined Louth County Council in 2005. This was his first fulltime employment and he has his late father, Michael to thank for noticing the County Council’s job advert for him while he was in the middle of a computer course.

He started his work with the County Council in the Motor Tax office; he moved to a couple of other departments and is currently enjoying his position in the accounts payable section of the Finance Department.

Michael’s disability has never been an issue at work; his colleagues have always seen beyond his wheelchair when he uses it and his caliper aids when he is walking.

“I am the one being very hard on myself if I forget to do something or make a mistake – I am the one who is more upset than anyone else.

“Since Independence Week, I am going a little bit easier on myself as I understand now. The big thing for me was that I was blaming myself by saying things like: ‘I am stupid’, ‘I am not god enough’,” continues Michael.

“During Independence Week it was a tremendous relief finding out that it is really not my fault and I should not be downbeat about it. It crossed my mind that if this was only explained to me years ago, it would have saved me a lot of hassle, but I will not dwell on the past, I will carry on forward.

“My work colleagues noticed a great change in me when I returned from the Independence Week.

“I felt the change myself but I was sure that no one else noticed it. It was little things: I began getting involved in conversations at work where in the past I had a habit of isolating myself and not getting involved in office banter as I did not have the confidence.”

Michael adds that a lot of things which previously did not make sense to him do now after Independence Week which has given him a tremendous sense of freedom.

“It was a relief to realise that I am doing okay; I am doing the best I can and my best is good enough.”

Following on from his own incredibly positive experience of the inaugural Independence Week, Michael’s advice to SBHI members who are given the opportunity is: ‘absolutely do it, it was the best thing I could ever have done! I got so much more from it than I expected as I now have a better understanding of me and my condition.”

Michael’s personal growth during the SHINE Independence Week did not go unnoticed and he was deemed to be the participant worthy of the Greatest Achievement award. The award was presented to Michael by Justin O’Neill, the son of the late Christy O’Neill.

“I was dumbfounded when I won the award. Justin told a story of his dad Christy helping a young boy during one of the summer projects to get up onto a step and back down,” says Michael.

“As I listened to the story, I thought that it sounded vaguely familiar and then I realised that the boy Christy was helping to teach how to go up and down steps was me.

“The fact that the award was presented by Justin and that he told that story made receiving the award all the more special.”

Looking to the future, Michael now intends to continue working on totally divesting himself of his ‘hang up’ over his disability; believing in his many abilities and moving towards further independence by learning how to drive and finding a home of his own.



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