Searchable article text
RMT helpline 0800 376 3706 :: september 2020 :: RMTnews 18 I have worked on the railway for thirty years and I am now an Off-Track Assets Inspector at Network Rail. A few years after I started, I began making vocal sounds without meaning to, and in 1994 I was diagnosed with Tourette syndrome. My Tourette’s ‘brain wiring’ will have been present when I was younger, but it was only later that something triggered the tics. My nephews have Tourette Syndrome: one has swearing tics, one has twitches (known as motor tics). My vocal tics are different in different situations. Sometimes I don’t even know that I’m doing it. Sometimes I involuntarily say what my plans are for the next day. At work, I have a routine. My inspections are set out every nine miles. I know what I am doing every week and I don’t like it if my employer changes my routine. People think Tourette’s is just about tics, but it is also about things like how I organise my life and the environment around me. Management have had to accept that I need my desk to be arranged the way I like it and for others not to mess it up. Sometimes, if I have a word on my mind I will say it involuntarily, and if people don’t know I have Tourette’s they can misunderstand my intentions. In the past, some workmates mocked me behind my back. It upset me, but some other workmates got together and tackled them about it. My workmates now are fine, and I have worked with the same bunch of people for years. If I moved to a new job, then I might be a bit anxious, but I am confident enough to tell them about my Tourette’s. It would be better if everyone was taught about Tourette’s, so I don’t have to teach everyone I meet! After I was treated badly on a flight several years ago, the holiday company now trains all its cabin crew about Tourette’s. Perhaps other transport companies could do that too. I don’t let it run my life. Tourette’s itself doesn’t cause me a problem. Sometimes other people’s behaviour does, and sometimes structural barriers such as routine changes do. I love being active in RMT, and when I am focusing on my union activity, my tics stop! D I S A B L E D M E M B E R S S P E A K O U T I DON’T LET TOURETTE’S RUN MY LIFE RMT member Philip Houston talks about living with Tourette syndrome