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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.

  1. The whole groupHow did you first hear about the IF course in Portugal?

My dad tagged me in on the IF Facebook post advertising the course.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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

  1. Had you done anything like this before?

No, I had never had the chance to do anything like this before.

  1. 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

  1. 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.

  1. 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.

  1. Was there anything in particular you wanted to learn about?

I really wanted to learn about my rights as a young disabled person.

  1. 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.

  1. 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.

Murrin speaking in front of the group

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