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Cailin'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 attended from our organisation and this is Cailin's story in her own words.

Cailin and Murrin during their trip to Lisbon

Hi there! My name is Cailin McKie and I am 20 years old. I live in Ayrshire in the west coast of Scotland and am a member of SBH Scotland. I am a forth year student studying Prosthetics and Orthotics at the University of Strathclyde in Glasgow. I would like to share my experiences about a recent disability rights training course I took part in.

The name of the course was: ‘My rights: Independent living, activism and participation for young people with Spina Bifida and/ or hydrocephalus’. It was organised by the International Federation for Spina Bifida and Hydrocephalus and the course took place in Lisbon, Portugal. The course was aimed at young people aged 18 – 35 living with Spina Bifida.

I heard about the IF course in Portugal through SBH Scotland. I saw the course advertised on their Facebook page and thought it looked very interesting.

I wanted to take part in the course because I wanted to learn more about my rights as a young person with a disability and about advocacy. I also was interested in the course because of my background as a student prosthetist/ orthotist. I work closely with people with disabilities on a daily basis and would like to help create a better future for these people.

The course was about disability rights, activism and independent living. The course also covered topics such as sexuality, accessibility, models of disability, disability awareness in education/ employment and reasonable accommodation. The United Nations Convention on the rights of persons with disabilities (CRPD) was also covered in detail.

I did not really have any concerns before I went on the course. I was excited to meet like minded people from across Europe.

I travelled to Lisbon by myself. A Personal Assistant (PA) could accompany you on the trip but I wanted to travel alone to become more independent. It was my first time travelling by plane alone so it was a big achievement for me.

The journey to Lisbon was arranged and booked by the International Federation’s travel agents. They covered the cost of flights and accommodation. I flew from Glasgow to London then London to Lisbon. I experienced delays as often happens with airlines and missed my connecting flight to Lisbon. I had to be re-booked on the next flight later that evening. I was proud of myself for overcoming these challenges that go along with travelling. The hotel we were staying in was located close to the airport so I got a taxi there. There was also a rail link from the hotel that took you very close to the hotel. All participants were advised of possible travel arrangements in advance.

The hotel we were staying in was very accessible. The course took place in one of the hotel’s conference rooms. The hotel had been well researched had accessible facilities such as shower chairs organised for the participants. It was also fully equipped with lifts and had very spacious rooms.

I was away for 3 nights. I arrived in Lisbon on the Thursday evening. The course ran from Friday – Sunday.

The most valuable thing I learned on the course was about the challenges other people with disabilities face. As I am very mobile I often don’t think about accessibility issues e.g. wheelchair access, stairs, lowered kerbs. Hearing the experiences of the other participants made me want to be more involved in advocacy and have the potential to influence change.

I met lots of people from other countries on the course. There were eleven other participants on the course. Murrin and I were representing Scotland. The others were from Portugal, Ireland, Sweden, Belgium, Turkey, Croatia and Estonia. It was great to meet people from different countries with similar experiences. I felt I could relate to everyone so well and we all had an instant connection due to all living with Spina Bifida. I felt very comfortable in the group and felt I could talk about anything with my new friends. I shared a room with a lovely girl from Belgium who was a similar age to myself. I enjoyed having a room mate since we were both in a foreign country and it was a new experience for us both.

It was interesting to hear how different things were in different countries regarding disability. In many other countries people must pay for medical supplies e.g. catheters or pay for medical insurance. In the UK we are fortunate to have such things covered by the NHS which is often taken for granted. Different countries also have different approaches to disability in general. For example, in Portugal there is a sign that is displayed in bars, restaurants and shops implying that people with disabilities need to be served first. However, what should really be done is have lowered bars and counters for wheelchair users. Make the facilities accessible for all is the important message.

I have never done anything like this before. It was wonderful to meet other young people with Spina Bifida. The course was also very educational and has encouraged me to be more active in my local Spina bifida group- SBH Scotland.

I thoroughly enjoyed spending time in Portugal’s beautiful capital city Lisbon. I would love to return to explore more of the area.

My days consisted of taking part in the training from 9:30am to approximately 5:00pm. The training involved ice breaker games, group discussions, and presentations delivered by the trainers. The third and final day involved working in small groups to come up with an advocacy action plan on a specific topic. The topic I was working on was disability awareness and inclusion in the education system. This was then presented to the other participants and trainers. The training built up our knowledge and skills as well as going into the theory of disability rights. In the evenings we had free time to explore city. We went for a social dinner one evening to a lovely local restaurant with all the participants and trainers. We also visited the oceanarium and took a ride on a cable car over the promenade. We also went to the local shopping mall which was huge!

The course was very well organised and I did not experience any problems while I was there.

I wanted to learn about raising awareness of disability particularly Spina bifida and hydrocephalus. A lot of people still don’t know much about the condition and I feel it is important to change this.

I gained a lot out of participating in the training. I have gained valuable knowledge and skills that has set me up well for future advocacy plans I have. I have also made friends for life. All the participants were so friendly and we all have so much in common. I hope to see them all again sometime soon. I have made great memories on my trip and would love to do something like this again.

If anyone wishes to take part in any future training events keep an eye on the International Federation for Spina Bifida and Hydrocephalus’s Facebook page. They hope to make the training an annual event! Also follow SBH Scotland’s social media pages as they advertise such events too. All that is required is to fill out a simple application form explaining why you are interested and what you want to gain from the training. I would encourage anyone to take part as it was a very positive experience. I had the most incredible time and would highly recommend it! It is a great opportunity to meet new people and learn new skills.


The group during a workshop The group during a workshop

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