Today is Shut Up! For MND Day
by Kate Johnson
Why did we choose to ask people to Shut Up!?
‘Shutting up’ for 12 hours is designed to give a glimmer of insight to the difficulties many people with MND face daily. This is a huge part of the awareness raising. This campaign can be serious, it can be fun, and people can bend the guidelines to suit them.
We always knew that using the term Shut Up! might be controversial and that the campaign may not be for everyone, but our clear objective is to raise awareness and funds that will ensure that the best possible care and support for people with MND is ongoing. We consulted quite extensively within the MND community and the response in the main was very positive. The term ‘Shut Up!’ is bold and we recognise and own that. Whilst the headline is attention grabbing, our content is respectful and has been very carefully thought out with those impacted by MND at the forefront of our minds. We know that raising awareness about the disease can sometimes be confronting, but it’s vitally important in ensuring the disease gets the recognition it deserves. Recognition means more funding which turns into better care, support, treatments and ultimately a cure.
This video shows why it is so important that we continue to provide excellent support.
A member of an NFP FB group highlighted the campaign recently and asked what others thought about the potential abrasiveness of campaigns that highlight the negative impacts of a condition or situation. There was a great and constructive conversation that followed, which again is what we are trying to do – get people talking about MND and its impacts.
Some feedback from a family member of a person with MND noted how much she disliked the campaign as she knows that people with MND using assistive technology for communication are sometimes told to Shut Up – as others are too impatient or uncomfortable waiting for them to type a sentence (often using eye-gaze technology) before they can play it for the other person. This recently happened to Professor Justin Yerbury who tweeted about his experience of a doctor saying that he couldn’t wait for an explanation of his symptoms, the eye-gaze took too long. I feel that if our campaign gets people talking about and highlighting such experiences so that we can make others aware and advocate for change – we are doing good!
Feedback from those participating in the challenge has included:
"It's actually eye opening how hard it must be for those with MND and disabilities in general."
"Taking on this challenge just magnifies how horrible MND is for me, any other challenge I've taken on is a walk in the park compared to this. Not being able to speak is so hard and so frustrating!"
So whilst I don’t apologise for asking people to Shut Up! today to raise awareness of MND and funds to provide the best possible care and support for people living with the disease, I do thank everyone that has participated, donated and provided feedback, both positive and negative to the campaign.
If you would like to make a contribution to help support the campaign, please donate here.
Until there’s a cure, there’s care.
Want to learn more about the Shut Up! For MND Challenge?