As someone living with Fetal Alcohol Spectrum Disorder (FASD) I never imagined I would get some of the amazing opportunities that I have and particularly one in the area I adore and is my passion, which is FASD Advocacy, Educating, Supporting and talking about my own personal lived experience.

Recently I was offered a huge opportunity to do something I had never done before and that was to attend and co-present the Association of University Centers on Disabilities (AUCD) conference in the USA. Living with FASD I knew that there were going to be many challenges that I would need to overcome, but I was excited to do that as it was another step towards a little more independence. Much of the organisation of flights and accommodation bookings were done by the individuals I was co-presenting with, which took a lot of stress away - as that Is something I would have struggled with.

For me what caused me the most anxiety wasn’t the long 8hr flight or meeting up with people I had only ever worked with on zoom, but it was the packing and a lot of the anxiety I think was my tunnel vision that I was terrified of sticking out or not looking the part this caused a lot of daily unpacking repacking before the trip as my anxiety would get the best of me.

The day of the flight I had gotten a handle of my anxiety of not fitting in or packing the right amount of clothing and I had decided if I forgot anything not much I can do about it now. After a 3hr drive to Dublin Airport we arrived I had made sure to wear my Sunflower Lanyard as someone with a hidden disability who gets sensory overloaded, severe anxiety and panic attacks and also has zero sense of direction the airport is a lot to handle so knowing that this airport recognised the Sunflower Lanyard and what it meant eased a little of my anxiety. When I explained to the flight agents they were more than helpful ensuring that I didn’t have to stand in the long noisy lines and made sure to explain to me all the process so that nothing would be a surprise and honestly that was one of the highlights of the trip was for the first time I had a positive experience in the airport environment where I wasn’t left drained and just an anxiety mess.

The AUCD Conference itself was inspirational to be in an environment where people want to learn about, and I mean really learn about all disabilities physical and hidden disabilities and they wanted to hear from the lived experience from the people themselves and wanted to know in what areas improvements need to be made researchers asking the questions on what they are missing and how can they improve and make things easier for individuals with disabilities. In America FASD is recognised and to a certain degree supports are in place so to be able to tell people that I have FASD, and they knew what it was. I didn’t need to explain and educate them which is what I am so used to doing in Ireland when I tell people what my disability is was very refreshing.

The conference gave me a lot of hope for the future and the importance of advocating and getting officials to accept that 'nothing about us without us' is the future; that individuals shouldn’t be just talked about and their disability referred to, but that actually hearing lived experiences their daily challenges how they have overcome or found strategies that work and how they cope when there are little to no supports. Hearing that will drive change and get the world to realise having a disability isn’t all negative and that with the right support and help we can be like everyone else. We have that right to get the same opportunities as the people around us who don’t have any disabilities get. Why can’t those of us with disabilities get the same. Equality and Equity is the key.

I was fortunate enough that I was able to attend the FASD United Red Shoe Gala where I was able to see how much work goes into ensuring that the organisation is able to continue to offer resources and also knock on those policy makers doors to get them to stand with them in recognising FASD. Allocating more financial aid would go to more individuals to help them get a diagnosis and the right support. It was a very successful evening and it also raised awareness of Ireland, and the hard work that is being done in Ireland to bring awareness, education and advocating for people with FASD.

This trip was hopefully the first of many and I really look forward to more adventures to come; and yes, I know I’ve left out parts of my experience of this visit. If I had put everything in this blog It would have turned into a book! This trip was full of overcoming challenges and just enjoying all the experiences.