Varsha: What can MSers do to encourage organisations to make adaptations for those with hidden illnesses?
Joanna Wootten, Disability and Inclusion Expert: I think some of it is about if you can do something that may benefit a range of people, when appropriate, and point out it’s not just people with MS.
Because sometimes organisations are going, is it only for one group of people. But if you kind of go, a lot of people may suffer, say, fatigue and give examples of the illustration, saying, and this is something practical you can do. If you’re able to make it easy for the organisation, they’re more likely to do it. If you have examples of other organisations doing it, do tell them.
Because, I’m not saying people want to keep up with the Joneses, but there’s an element of, well, if they can do it, we should. So it’s really worth it, if you know of examples of good practice in one place, share those examples of good practice or take photographs of them and do share it. And give it a go. I do think, because I’ve worked inside organisations, it’s always worth sending an email.
It will tend to get noticed, it will, I mean okay, it will go into the stats [?], blah-di-blah, but people do eventually go, we seem to be getting a lot of complaints about x. I’ve heard a good example, you know the toilet campaign, ‘Not every disability is visible’.
The reason that so many people now installed those notices is because they’ve got a campaign behind it and supermarkets, example, got at least one and a half thousand emails saying please do it. And so I think they all do better. But, sometimes one email can make a difference, if you explain it, because it’s about timing as well, so do keep it up.
Varsha: So you think that if someone has a bad experience somewhere and they’re upset about it, they shouldn’t hold on to it and maybe complain to their friends or family about it, they should make an official complaint about it so they’re taking positive action out of a negative experience?
Joanna Wootten: Yes. I think so. I think it’s always worth explaining the impact it had on you, saying what would have helped if you had done A or B, but instead, you did C, D. Please let me know what you’re doing to rectify the situation. Yes.
This interview is part of a series called ‘Hidden MS’ which is supported by Roche. MS Reporters™ is a Shift.ms production. Roche has had no influence over the content.