Last year the Al Jazeera TV journalist Stephanie Scawen presented MS and Me, a film about coming to terms with her MS and investigating the significance of the latest MS research. This year she was keynote speaker at the MS Trust Annual Conference, our event for MS healthcare professionals
What kind of feedback did you get after MS and Me was broadcast?
The feedback was amazing. Most comments were very supportive of me with lots of comments about how brave I was, which was very flattering as I personally don’t feel brave. Things are just the way they are. I had many offers of snake oil cures and treatments which I just ignored, and many links to an American woman MD’s online video about how she cured her MS by eating bucket loads of kale every day (yuck), which also seemed to be a bit of a scam to me as all she really seemed to be doing was trying to flog her book, rather than exposing her cure to scientific scrutiny. But overall the feedback was amazing.
You said your ambition for the film was “To show people with MS that they can do whatever they want to do. You just have to approach it slightly differently.” Do you think you succeeded?
I hope so. For people who are not disabled or who do not have first-hand experience of dealing with someone with disabilities, it’s very hard for them to imagine what life is like being unable to do things as normal. The idea, for example, of losing a leg in an accident, would be for many people unbearable. But when they are confronted with that reality they get on with it, because you just have to. Look at all the Paralympians who do such amazing things!
When we last spoke you were coming round to the idea of using a mobility scooter or a wheelchair. Did you go ahead with that? If so, how are you finding it?
When my left leg started spasming towards the end of last year it was the most sensible thing to do in the end, as my walking had become so slow and difficult and I was in a lot of pain, so a wheelchair just meant I could get around more quickly and safely. And the sky didn’t fall in as I had feared. Generally people have been very helpful with it. And I get to queue jump everywhere which is good. I’ve had a few ‘exciting’ episodes with my chair which I discussed in my speech. It certainly ain’t boring.
We’re delighted you agreed to speak at this year’s MS Trust conference. Having travelled the world as a journalist, reporting from war zones and scenes of disaster, did the prospect of speaking to a room full of MS professionals hold any fears for you?
No. I was more afraid no one would understand my sense of humour!
As a journalist do you have any thoughts on how MS – or potential cures – are covered in the media?
Most articles are reasonably balanced, but it annoys me that they pretty much always refer to MS as a crippling disease, as if a diagnosis instantly places you on the scrapheap. For the majority of people it’s not. There’s an old media phrase “if it bleeds, it leads”, so the headlines will always focus on the best or worst outcome. “Scientists find cure” or “MS drug kills patient”, for example.
And the headlines talk about a cure as if it will be on the shop shelves tomorrow. I wish I could say journalists should check their facts for accuracy or at least balance, but in this world of 24-hour media the critical details seem to get missed out.