Being diagnosed with a rare condition like Usher Syndrome is isolating.
However, the Internet has been a lifeline for me.
When times have been tough and I've needed a friend, an opinion, somebody going through similar to me I was able to look online and find a friend.
It was so useful I was able to set up a group and find others with Usher Syndrome all around the world, also people with RP or deafness, we had somewhere to "meet" share experiences and support each other.
When I look back I was lucky, my Mum had made quite an effort for me to meet others with the condition. Online I realised so many people with Usher Syndrome had never met somebody else with the condition - the Internet and particularly, at that time Facebook brought people together, it was powerful for so many of us with Usher Syndrome and others with sensory impairment, blindness and deafness, also to those with mobility issues and unable to get out very often and we could all communicate together.
It was a level playing field, accessing each other through text online it was a fantastic way of feeling included, a part of something, inclusion.
Initially we were all communicating the same way, it didn't matter whether we were oral or used sign language the communication barrier that is so often there wasn't there it was great - all with Usher Syndrome were the same for a while, it was great, sadly it has changed and barriers are back which is a real shame.
As time has progressed Facebook offered video and it's great but it has brought a communication barrier amongst those with usher again which is quite sad.
Those who's first language is sign language now communicate in this way on Facebook with the video feature which is fine for them but it does exclude those who are oral and also those who are very blind, I'm sad that we can't all communicate with each other in the same way but it does come down to personal choice.
As time has gone on I have found lots of alternate social networking sites and their accessibility features are so much better, as a result I'm using them more and more, surprisingly Facebook has not kept up at all.
If accessibility doesn't improve I and many like me will soon not be able to access Facebook at all which is very sad - meaning isolation for many.
The problems I experience with Facebook are echoed amongst not just people with Usher Syndrome but the blind and the elderly and probably other groups too.
I speak about accessibility a lot in my blog and when I present because it is so essential to me.
I receive lots of email and requests for information too, I'm happy to help if it helps others.
I am not an expert but I do know what works for me will work for many others.
I am a Motivational Speaker and cover aspects of accessibility, inclusion, isolation, communication and mobility when I present, I also answer questions, for more information please contact me.
At a recent event I was asked about my thoughts on Facebook.
My view is that they need to improve and quickly or the inclusion people like me have enjoyed over the years will end and there'll be isolation for some and that is very sad.