So I promised a bit more in my last post about the Kanchi meeting which I attended last Saturday after my 10k walk (did I mention that I did 10k… at 7am!)
I had to race back to the Merrion Hotel for the meeting (thanks to Lorriane chauffeuring I got there on time), where I met a great bunch of very interesting people with varying physical and mental disabilities. Kanchi is a not-for-profit organisation that works to change thinking on disability.
The sounding board meets once a quarter to provide input to the work that Kanchi are doing from the perspective of those living with disabilities. Everyone there was very comfortable in their own skins, through participating in the board they were all doing something to make a difference to the world of challenges we face, despite the every day challenges they face. What was palpable was the positive attitude and their desire to give back to the community, their knowledge based on their life experiences.
It was a varied and interesting meeting. One thing that I came away with from the day, was that I need to let people know how Parkinsons affects me and not expect them to guess. When my meds aren’t working I become disabled and when they are working people can’t see anything wrong with me. It’s one of the things that confuses people, often they say to me ‘but you look so well’ and I think ‘you should have seen me getting up this morning’. I realised as we chatted that there are so many types of disability that we can’t expect people to understand, we have to help them to learn. There are many disabilities which I don’t understand, so why do I sometimes expect that people will understand what it is that is going on for me.
By raising awareness of what we need in terms of support and sometimes just the physical layout of buildings, we can increase how included we are, because we can actually get out there and get involved in society… without worrying about how our disability might hamper us as we go about our daily lives but instead knowing that the physical layout and technologies available have been built with everyone in mind and not just those without disabilities.
Thanks so much to everyone on the sounding board for having me along, what a wonderful way to spend a Saturday.