Murrin's Experience - ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’
In October, IFSBH ran a 3 day course in Lisbon, Portugal, for people aged 18 – 35 called: ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’. One of the key things all participants had to do on their return to their respective countries was share their experience. Cailin and Murrin from our organisation attended and this is Murrin's story from her journey.
- How did you first hear about the IF course in Portugal?
My dad tagged me in on the IF Facebook post advertising the course.
- What made you decide that you wanted to take part in the course?
As a young adult who has just started college, I am beginning to think more about my own independence what my rights in the world are. This course seemed like a good opportunity to learn more and to give me some tools to start take control of my own life.
- What was the course about?
The course was about my rights as a disabled person as set out by the UN Convention on the Rights of Persons with Disabilities and also independent living as a young disabled person. We were taught how to use the convention and apply it to situations that we may find ourselves in. one aim of the course is to help us with our activism skills to try and effect change where it needs to happen.
- Did you have any concerns before you went?
I was a bit nervous before I went as I did not really know what the course would entail, also I was worried as I did not know anyone else who was going.
- Did you travel alone or were you able to take any family or friends?
You had the option to take a Personal Assistant to help you, I took my Dad but some people travelled alone.
- How was the journey to your final destination? Was it accessible for you? Or were there issues along the way?
The journey out was okay, but at Lisbon airport they did not bring my wheelchair back to the door of the plane as requested, this meant that we had to sit on the plane for about 40 minutes while they brought a different chair with assistance. When the then secured this chair in place in the transport vehicle (from the plane to the terminal) the chair was strapped down but there was no seatbelt across me, if the vehicle had braked suddenly I would have fallen out of the chair. However all of the people were very friendly and spoke excellent English. Our trip back was more of a problem due to delays, my dad had to run while pushing me through Brussels airport to catch our connecting flight. We made it but our luggage did not. We were not reunited with it until many phone calls and 48 hours later.
- How long were you away for?
The course lasted 3 days, we arrived the day before and left the day after. In total we were there for5 days.
- What was the most valuable thing you learned from the course?
The most valuable thing I learned was that independent living does not have to mean you live on your own doing everything but rather that you live your own life with the right assistance to help you live your life in the way you want to. One of the speakers, Kamil was an amazing advocate for independent living and very inspiring.
- What would you like to share?
I’d like to inspire others with spina bifida and other disabilities to believe in themselves and that they can make a difference if they really want to. I’d like to help others to learn how to be advocates for issues that they believe need to be addressed by sharing some of the tools that I learned.
- Did you meet others from other countries?
Yes, I met one girl from Scotland who I had never met before even though we are quite close in age, however I also meet people from Portugal, Greece, Sweden and Belgium, amongst others. We shared a fantastic weekend and they are all amazing people in their own right, I now have an international network of friends with Spina Bifida.
- Were there any big differences in the experiences they had in their countries that you felt you didn't have in Scotland?
I found that we all worried about the same sort of things and faced the same challenges in life
- Had you done anything like this before?
No, I had never had the chance to do anything like this before.
- How did you enjoy spending time in Portugal?
I liked being in Portugal in October as it is still warm, the people are very friendly, in fact before we even got off the plane in Lisbon we had met an architect who is involved in trying to make the town accessible, who emailed us their accessibility guide to Lisbon and asked us to let them know what we thought of it. Lisbon is a beautiful place that I would like to visit for a holiday some day
- What did your days consist of?
Our day started with Breakfast which was a large buffet which you could pick from and eat as much as you liked. We then went into the training from 9:30 until 11 when we had a half hour break for coffee and personal care, we then had another session until 1 when we broke off for lunch, which was another extensive buffet. At 2:30 we went back into the training until 5:30PM with one other brief coffee break during this session. During the sessions there were 3 people leading the training who talked to us about the different topics and showed us presentations. We also had ice breaker games to help us get to know each other and to break up the heavy learning. We would break into smaller groups and carry out exercises to help us put in to practice the knowledge we were being taught. They were long intensive days and this was as far from a holiday that you could get. In the evening we had some free time where we went for a meal together with members of the Portuguese spina bifida and hydrocephalus association, where I tried Squid for the first time! (In case you are wondering squid is yummy!) We also visited the aquarium and saw lots of sharks tiny frogs and jellyfish.
- Were there any challenges throughout your time in Portugal?
My biggest challenge was overcoming my fear of speaking in front of lots of people, I still have this fear but I know that some of the others were nervous about this too. The pace of learning was also quite fast and my hydrocephalus really needs a lot of repetition to help things stick, this led to me being unclear on some things, I would go over some of the stuff later with my dad to try and make it sink in.
- Was there anything in particular you wanted to learn about?
I really wanted to learn about my rights as a young disabled person.
- Did you get everything out of the course that you had hoped to?
Yes I feel I got everything out of the course that I wanted and maybe more.
- If someone were to wish to take part, how would they go about applying?
Keep an eye on the international Federation for Spina Bifida and Hydrocephalus Facebook page and twitter feed, they will post here if they have any course coming up along with instructions on how to apply.
In only 6 weeks we welcome our new Strictly Come Prancing event!
Twelve couples are already in training, hoping to win the coveted glitterball trophy but who are the four people entrusted with their fate??? It's time to meet the judges...
1) Meet our Head Judge, Gok Wan. Gok Wan is an award-winning TV presenter and fashion expert. His name is now synonymous with offering straightforward fashion advice to women to boost their appearance and confidence, no matter their age or shape. Gok’s engaging approach, combined with his personal charm, has enabled him to build a reputation as one of the UK’s best known TV presenters. But the question on everyone's lips is... Will he like our dance couple's performances?
2) Meet our judge who loves all things fabulous - it's Mr Fabulous himself!!
This is not his first time judging, having been involved in lots of charity events before. He has many projects on the go at all times as well as being a radio presenter on Scene Radio and a regular TV presence on STV. He is involved with lots of different causes and is proud to have fostered over 50 children! He and his husband were even one of the first same-sex couples to adopt a child back in 2009!
When we asked what kind of judge he plans on being, his response was,
“Mr Fabulous is ALWAYS fabulous, so I’m going to be the nice, bubbly judge!”
3) Meet singing sensation, Carol Laula! Carol says she has two left feet so is much happier being a judge than a dancer! However she knows about a good performance being a well known singer/songwriter. Her song 'Standing Proud' was even picked as the anthem for Glasgow's year as European City of Culture in 1990!
Carol’s worked with many Scottish artists, including Stuart Nisbett (The Proclaimers) and has released 8 albums!
When she judges the dancers, she says she will be looking for three things.
“Enjoyment, enthusiasm and timing”.
Let’s hope our dancers meet her checklist!
4) Last but by no means least - Meet April Stuart Macrae, who owns and teaches at April's Street Feet. She has lots of experience dancing having competed in competitions herself and guiding her own dancers to victory on many occasions!
She admits that, while she is usually quite strict on her own kids, she is aware that not everyone competing in November has dance experience, and while it would be good to see some technique,
“If they give a good performance and look like they know what they’re doing then good on them!”
Look out for all our Strictly updates on our Twitter and follow #SCPrancing
Tickets are going fast! Buy your today online.
A host of inspiring dancers, including some famous Scottish faces, are getting ready to do their bit for cha-cha-charity by taking part in Spina Bifida Hydrocephalus Scotland (SBH Scotland)’s first ever Strictly Come Prancing event.
Saturday night fever is set to sweep through Glasgow’s Double Tree Hilton Hotel on 10 November, when 13 couples – including Heart Scotland radio presenters Paul Harper and Lynne Hoggan, as well as reality star Brian Matthews, formerly of GLOW – take to the dancefloor to try to impress head judge TV fashionista Gok Wan. The ‘How To Look Good Naked’ star will be joined on the judging panel by singing sensation Carol Laula, radio presenter James Smith and dancing instructor April Stuart Macrae.
To make sure they know their mambos from their rhumbas, the couples will prepare for their big night with 10 weeks of professional coaching at April’s Street Feet’s dancing studio.
Taking its lead from the hit BBC show, SBH Scotland’s Strictly Come Prancing distinguishes itself from similar events by opening up the contest to same sex couples. Encouraging inclusivity, the inaugural event will see three couples of the same sex competing for the coveted Glitterball Trophy.
All proceeds from the night will go to SBH Scotland and our services to support children, young people and families affected by lifelong disabilities spina bifida and hydrocephalus.
Strictly Come Prancing competitor, and Heart radio host, Lynne Hoggan said; “I am really looking forward to taking part in this event, I guess every girl wants to dance like Baby from Dirty Dancing at some point in their life. Plus, it's a great new way to keep me in shape and I can't wait to get all glammed up for the big night.”
Richard Donald, events manager at SBH Scotland, said: “Strictly Come Prancing is not just about raising money for the charity, it’s about flying the flag for diversity and equality, as well as having a bit of fun.
“We’ve got a great line up, and it’s shaping up to be an incredible night. All 26 dancers have committed to putting themselves through 10 weeks of training to get in the best shape possible for the big night and they are all desperate to show off their moves to Gok, and the other judges.
“We look forward to seeing them take to the stage in November, and hope to see as many people in the crowd as possible.”
Tickets for the event are now on sale online at a cost of £65 per person, or £600 for a table of 10.
A Tullibody mum has followed in her daughter’s tracks when she tackled her first triathlon to raise funds for SBH Scotland.
Kirstie Dawson (45) took on the Stirling Super Sprint on June 3, a gruelling test of endurance that requires competitors to swim 400m, cycle 17km and then run for 3km whick she completed in an incredible 67 minutes and earning a new personal best in the 17km cycle.
Kirstie, who raised over £1000 for the charity, revealed her motivation for taking on the challenge comes from daughter, Meggan. The 25-year-old was born with spina bifida, a fault in the spinal column where vertebrae do not form completely, and has hydrocephalus - a condition where increased pressure on the brain can cause social, emotional, cognitive and behavioural difficulties - but that hasn’t deterred her from fulfilling her sporting ambitions.
The wheelchair racer, who competed in the 2014 Commonwealth Games in Glasgow and at one point held Scottish national records over eight separate distances, had been in training for this year’s London Marathon when she picked up pressure sores and is now taking time out to recover before taking on her next challenge. Mum Kirstie stepped in to ensure her daughter’s fundraising intentions wouldn’t be in vain.
She said: “Meggan was upset when she realised she wouldn’t be able to take part in the marathon as she had hoped to raise funds for SBH Scotland so I decided to take up the mantle. My friends persuaded me to sign up for my first triathlon so I’ve been hard in training for that. Meggan has been laughing at me looking totally exhausted as it’s usually the other way around!”
Training for the triathlon has made Kirstie even prouder of Meggan who, she reveals, has undergone more than ten operations to insert shunts which reduce swelling on the brain, and repeat bowel surgery without ever complaining.
Kirstie added: “I’m really proud of her. I’ve never met anyone so resilient and upbeat despite everything she’s been through. She jokes about the fact the operation scars on her tummy are in the shape of a giraffe!"
“She’s a true inspiration and always looking to help others. She recently had all her hair chopped off so she could donate it to a charity that helps children who have lost their hair because of leukemia and that’s just typical of her.”
SBH Scotland are in the process of creating a children’s book about Meggan to inspire other children with disabilities to never give up and not be afraid to try new things.
Her mum added: “The hardest thing for Meggan when she was growing up was that there weren’t many other kids with disabilities in our area."
“Then she was a teenager she went to a sports camp and got to meet kids like her who didn’t want their condition to define them. Hopefully this book will let other children with spina bifida or hydrocephalus realise they are not alone and that they can achieve anything they set their minds to.”
"The services and support that SBHS have given us as a family is invaluable, i am in no doubt Meggan would not be the young, confidant young lady she is today without their drive to encourage and enable her to become the best version of herself"
Deborah Roe, fundraising director at SBH Scotland said: “Meggan’s story is truly inspirational and it’s great to see mum Kirstie getting involved now, too, in her own athletic endeavours. We wish her all the best for her triathlon."
“As a charity, we rely solely on the efforts of our supporters and because of people like Meggan and Kirstie we are able to offer a range of services from weekly support groups to tailored activities for children and young people and advice for families affected by the conditions."
You can help contribute to Kirstie's fundraising efforts.
For more information on services offered by SBH Scotland please contact us
Blair Drummond Safari Park quietly opened its gates after hours on Friday 1st June for an exclusive event, and Spinal Bifida Hydrocephalus Scotland (SBH Scotland) was delighted to be involved.
‘Dreamnight at the Zoo’ is a special event that is held globally and hosted by over 300 zoos, safari parks and aquariums across 35 countries.
Dreamnight allows children and families who are living with life-long illnesses or disabilities to enjoy a memorable evening together. Blair Drummond Safari Park hosted its first Dreamnight in 2009.
This year the special evening took place between 6:00pm and 9:00pm on Friday 1st June and 1000 tickets were given to invited children and their families for a VIP experience with entertainment, refreshments and an early evening tour of the Safari Park. The families attended free of charge and their invites were allocated through charity partners. We were delighted to be given 75 briefs to pass to SBH Scotland families.
It was a very successful evening which allowed our families to have an enjoyable and unique experience with each other in a relaxing environment with other families. SBH Scotland was delighted to have been able to be a part of the event and grateful to have been invited.
Gary Gilmour Park Manager at Blair Drummond Safari Park comments: “Many of the families invited through our charity partners face challenges on a daily basis, and we’re very happy that we are able to host them for this memorable evening. Our event took place with the help of Safari Park staff, volunteers, suppliers, and supporters such as the Scottish Fire and Rescue Service and Police Scotland - we’re grateful for their commitment to make it happen.”
Event organiser and Head of Education at Blair Drummond Safari Park Katie Macfarlane said: “I’m delighted to have helped create this memorable experience for our guests- it was a very special event to organise and be part of. The families who attended all seemed to have a fantastic night. Thanks to all those who attended and volunteered on the night – we couldn’t do it without them.”
If you are affected by Spina Bifida or Hydrocephalus and would like more information on what we do, please contact us.