Antonio (PA): Before meeting Ethan I had been a lawyer for 10 years in my home country of Portugal. We first got to know each other in Derry in 2009 when I was studying for a Masters degree in human rights, specialising in conflict resolution. I was writing my thesis (The Democratic Transition in Northern Ireland – a study about the constitutional solutions adopted by the Good Friday Agreement) which was an analysis of the Northern Irish troubles and the constitutional legal framework (power sharing) that sustains the Good Friday agreement. Ethan and I were taking part in a peace building course at Ulster University. We are both passionate about being involved in human rights and peace work: e.g. I travelled to Pakistan as a short term observer to the EU Election Observation Mission covering the general elections in 2013. Our friendship developed and from 2012, I travelled with Ethan as a volunteer support worker to a number of countries including Kenya where we spent some time involved in a human rights project called Peace by Piece. After going home to Portugal for a period, I returned to Scotland in January 2017 and since then I have been Ethan’s PA.
Ethan: I studied Film and Media Studies and Mathematics for a year at university, but left to play competitive pool representing Scotland – yes I know, but I was young! Realising that this was definitely not a long term option and as I always liked maths I returned to Stirling University as an employee in the Finance dept. However after a while I again got ‘itchy feet’ after a Sahara Desert Charity Trek and applied to Voluntary Service Overseas, completing six-month placements in Wales and India. Following that I travelled widely including to the Palestinian West Bank and Kenya. Before receiving a direct payment, I had no support and relied on family and friends who were, and continue to be, very supportive. One of the reasons I left university was that I really needed more support, but was not ready to admit it. After setting up my own charity, working both internationally and locally for several years, I was beginning to feel that I needed a more structured job with a clear brief and with appropriate support in place. I really wanted to find a post with a human rights perspective and so was delighted to secure a job with Inclusion Scotland. I started in September 2016 in the post of Civic Participation Officer with a remit to lead on the Access to Elected Office Fund Scotland, which was set up to provide finance to overcome the impairment related campaign barriers that disabled people face when running for party selection and as a candidate for elected office.
Antonio: My main role is to provide practical personal support to Ethan, e.g. in the morning to get ready for work. I drive him to-and-from work and provide whatever support Ethan needs during working hours from assisting him with his job tasks to making the tea or coffee! Having this practical support helps Ethan to conserve his energy so that he can fully focus on the demands of the job. I accompany Ethan to any outside visits or events in relation to his job and I check out the accessibility and facilities to ensure they are suitable for his needs. I work to a set rota every week, but there is still flexibility. We discuss any changes in hours that might be needed depending on Ethan’s commitments. The quality of our relationship, the fact that we feel very comfortable with each other and the level of trust that has to exist between us is absolutely critical. Ethan says that it is almost like a marriage and to an extent the joys and pressures of spending so much time in each other’s company are similar to that I think! Ethan does have another PA (Alasdair) and we provide cover for each other’s holidays. The type of support I provide has changed over the time I have known Ethan. In Kenya the environmental conditions were harsh which was a challenge whereas now Ethan’s condition means he needs a greater degree of support, but knowing him for so long helps me to understand and appreciate his changing needs.
Ethan: I chose to have PAs because my dad had the same condition as me and he used agency workers, but there was no consistency. We all have people that are in our ‘circle of trust’ and I felt that those workers operated outwith that. Workers came and went and he was having to explain his needs to different people time and time again. I didn’t want that. My condition was deteriorating and I was forced to admit that I was able to do less and less. Having a PA has opened up a whole new world of opportunity for me and now with the support of PAs I am now able to do more than in some previous years. I also wanted to be able to offer secure employment to people and help them develop onto the next part of their journey. I employ Antonio using a combination of direct payments and Access to Work funding. Of course you have to be clear about your responsibilities as an employer. It takes time to put everything in place and I would encourage people to use the support organisations that are there to help.
Antonio: I enjoy helping Ethan get on with his life in the way that he wants. I like to be busy and although there are some occasional quiet times it balances out on the days we go 100 miles an hour. I would say that you really have to love the job. If you don’t enjoy this type of job it won’t work.
Ethan: Life is constantly changing. My close friends and I all have busier lives so we don’t see each other as often, however I am moving to Edinburgh soon and see that as the beginning of a new chapter. With the support of my PAs I am looking forward to getting involved in all the city has to offer. And sometimes the unexpected happens. Travelling through to a meeting in Glasgow today we gave a lift to two hitchhikers from the Czech Republic. They were travelling to the city and wanted to visit Celtic Park, which conveniently happened to be on my route. We were delighted to be able to assist them and welcome them to Scotland, but I would not have been able to do that without a PA. That just says it all!