Monday, 30 July 2018

Guest post: Has the MS Society woken up?

Finally the MS Society is embracing people with progressive MS and mobility issues in a positive way. There will be a walk of one kilometre at the next sponsored walk in Battersea Park on September 2018.





Sport is an area of society in which ableism is seen only too often. It is only within the last ten to fifteen years that society no longer perceives athletes with disabilities as being inferior. Look at the success of the recent Paralympic games. Yes it’s fantastic that we recognise and support these people but almost all of them have a fixed disability.

“Aha” I hear you saying, “Aren’t people with MS often sponsored to run in a marathon?”

“Yes there are lots of people with MS who can run a marathon but you hardly ever see a world champion who has multiple sclerosis”.

The exception is Stephanie Millward who won five swimming medals at the Paralympics at Rio in 2016.

For many years the MS Society has organised a sponsored walk in London. The walk could be one of three distances 5 or 6km, 10km or 20km. It is not a competitive event; you can walk it, stroll it, or use your mobility scooter.

The MS Society encourages us all to take exercise. I really wanted to take part in the walk but 6km was going to be 5km too far. Eventually I decided to do the short walk on my mobility scooter. Sadly when I finished there was no sense of achievement for me.

Last year I wrote an article about this problem and how I felt. It was posted on my website and here on the blog. I did this to overcome my sense of frustration at the ableism of the MS Society. I very recently received an email from the MS Society stating that on Sunday 23 September this year a walk of 1 km has been added to the event. Hey, that is a great result!

It is fair to add that I did speak to Michelle Mitchell when she was chief executive of the MS Society on this issue. Did this help? Who knows but someone somewhere told the MS Society to wake up.

This is a win-win result for the MS Society and people with progressive MS. Training for and undertaking a walk of 1km is going to be hard work for people with balance and mobility problems. Trust me. When you have been sponsored to walk a mere 1000 metres there is a genuine sense of achievement when you finish. I do hope enough people walk this distance so the MS Society feels obliged to include a 1km walk next year and the year after.

Unfortunately I’m going to be on holiday in Australia so I am unable to do the walk this year.



I am Patrick Burke, I was diagnosed with RRMS in 1995 but I believe the symptoms started in 1972.The disease turned into SPMS in about 1999/2000. I took medical retirement in 2012 and setup the website Aid4Disabled in the same year. The website is the story of my MS since retirement and it also identifies a wide range of objects that are readily available and can improve quality of life. I am also a member of the Barts-MS Advisory Group.

4 comments:

  1. The previous article that I wrote lst year is at this address
    http://multiple-sclerosis-research.blogspot.caom/2017/07/guestpost-taking-ms-society-to-task.html

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  2. Patrick,

    Thank you for your advocacy in this area. Creating a community is very important and will help and inspire everyone.

    Best of luck,
    Troy

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  3. Many thanks, Patrick for championing PwPMS. I'm no longer in the UK - as I moved to the US in 2016 - but any progress in the UK influences what might happen here.

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