Skip the primary navigation if you do not want to read it as the next section.
Primary Navigation
|
Home
|
|
Skip the main content if you do not want to read it as the next section.
Marianne Scobie from Glasgow is 37. She has had juvenile arthritis since 1981.
I work full-time from home, as a project manager for a big disability organisation. I do office-type stuff and I also do some training in my job and as a freelancer.
I’ve found the best way of working for me. In the winter I often work from 10am-6pm or 11pm-7am rather than 9am-5pm. At events and conferences I’ll ask to sit down, but sometimes it’s better for me to stand up.
I’ve been with the same employer for 10 years. They’re very good at reasonable adjustments and they don’t count impairment-related illness as sick leave. When I’m travelling, I don’t have to use the cheapest form of transport so I don’t have to leave early in the morning. I can stay overnight before or after a meeting. Funding from Access to Work means I’ve had a personal assistant ever since I started work. They help with driving, carrying and typing – things that require manual dexterity.
I do have days when I’m really sore and tired. Last Thursday I couldn’t get out of bed. I ended up working on Saturday instead. Sometimes I feel bad about letting people down, or having to leave early. People know that I will give 100 per cent if I can do it, but sometimes I just can’t.
I’m lucky I’ve got a good job, a decent salary, a permanent contract. These days most employers are quite flexible, but sometimes you see jobs that say driving licence essential – it’s not.
Fatigue is the biggest thing. Using a wheelchair means I can use my energy to stay in employment – it’s the best thing I ever did.’
