Pecha Kucha: towards a disability calculator for people with MS

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“This following video is an experiment and is part of a series called ‘Pecha Kucha‘! It was made as part of programme to train our research group to better engage the public in science. The training programme has been funded by a generous grant via a Peoples’ Award from the Wellcome Trust. The award was given to Shift.ms, a very special and innovative MS Charity (more on this later), to partner with us in making MS-related research more accessible to MS’ers.  The idea is to create a two-way street; not only do we have a forum to communicate our research to you, but we actively encouraging MS’ers to help us set the research agenda. Any ideas? What do you want us to do?”

Pechu Kucha means chit-chat

Sites of interest: www.shift.ms, Wellcome Trust

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

17 comments

  • I've gotta say one of my biggest gripes with SHIFT MS is just how white and middle-class it is. Even the videos of young folk talking about MS always feature well-spoken white people from the Home Counties. As a 32-year old Asian guy from the North of England I do find this 'liberal-racism' highly annoying and disrepectful. Where are my experiences presented in the discourse of being young(ish) and having MS?

  • Re: "I've gotta say one of my biggest gripes with SHIFT MS is just how white and middle-class it is."

    Nothing is set in stone; you should do something about it and change things. Either join them or start something of your own in competition with them.

  • Shift.ms is simply a social network and like all social initiatives attracts like-minded people. Shift.ms'ers should be congratulated for having energy and initiative. I wouldn't call them liberal racists at all.

  • For me (Indian living in India) one of the few good things to come from MS is the community with MS people around the world.
    I'm not familiar with Shift.ms but would advise the young man to look beyond skin colour and class and whatever else

  • I think the term "liberal-racism" is perhaps too strong a phrase for the young man (yes, 32 is young) to have used about Shift MS, but I do see where he's coming from.

    I suppose the problem here in the UK is that being an ethic minority sufferer with MS is like being a minority within a minority.

    I agree with Gavin Giovannoni in that you should try and address the issues you've raised and become more active. Asians with MS in Britain are not that rare.

    I think that Shift MS can perhaps make an effort to get minority community groups involved. (Put some photos on the website reflecting the many different incarnations of MS, etc.)

    Still, this is a good healthy debate to be having. I'd argue that this blog is the ultimate social network for people with MS. There are many different voices and points of view. I love it.

  • Sorry you feel that way Anon 1.

    Shift.ms is a community. It's made up of the people who use it and find help and support there. And it exists only because of the community.

    If it's not what you want it to be, get involved and change it.

    Email me: beki@shift.ms

  • Yes, being from an ethnic minority in the UK and having MS is like being a minority within a minority. However, the only way to change things is to get involved. There are plenty of opportunities to do so, you just need to look in the right places.

    I am Asian, female and in my 30s. Since I was diagnosed I have become involved in MS-linked work at both a local level, national level and an Asian-specific level.

    I am also a member of various social networks – some specifically for Asians with MS, others just generally for anybody. The issues addressed and advice gained from each does differ but is all useful.

    I am also a member of Shift.MS so we are definitely not all white on there!

    The only way these organisations will become more "representative" is if people at the "grass roots" level join up!!

  • @Becki –

    I went on to your site and do find it a bit hard to understand how it's meant to work. I also think you should make it more than just a social networking thing. Get young researchers on board to communicate with young MS sufferers.

    I also think you ought to try and branch out a bit and make your site more hip. You should start writing features, not just on MS but on things young folk dig. Write about music and movies. In fact, get those who are young and suffer from MS to write about cool stuff they're doing or looking forward to. Have a blog on your site where you do stuff like top 5’s of this and that, such as absurd plots to do with illnesses in movies (creativity is not my strong point, I know).

    Also, get talking about the many stylish campaigns to do with MS. Do you know that the A-list American fashion designer Tommy Hilfiger’s sister has MS and that he in conjunction with the Nancy Davies Foundation hold an amazing celebrity fashion show every year in Hollywood to generate money for MS research? They raise millions! They have Paris Hilton and Avril Lavigne as patrons because both have family members with MS. Even the Goo Goo Dolls played there (not a fan of theirs, but it was nice of them). Maybe you can write a feature about that on Shift MS.

    I suppose I could’ve e-mailed you these thoughts but kind of like the faceless way of doing things. All I’m saying is that I think by linking your site with pop culture and youth, you’ll perhaps even get those without MS interested and as a result raise the profile of this largely young person’s disease.

    PS – The Asian thing is interesting. I come from a pretty multicultural family and Asian members in my extended family attend our cake breaks to raise money and stuff. It’s not good to hear that Asians with MS feel left out. We’re in this together bro.

  • Re Awsome MS Society

    Are you suggesting that MS Shift is simply an opportunistic fad association of social networking than a genuine movement that can cleverly tie in with the pop-culture to get its message across more effectively? If that is the case then I think you have some interesting suggestions. I like the idea that Shift MS can become an online cultural magazine that has MS at its core.

  • Typical of Shift MS to wheel out a token Asian with MS to counter the criticisms directed at them.

    I do think that Shift MS can be a more representative organisation. The excuse that it is only as strong as its membership is one thing but there is nothing about its design or images that evokes a sense of multiculturalism. In fact, there isn't even a picture of anyone in a wheelchair or mobility scooter. If the face of multiple sclerosis is what Shift MS depicts then sign me up because I'd rather have their version of the disease than what I've actually got.

  • RE: "Typical of Shift MS to wheel out a token Asian with MS to counter the criticisms directed at them."

    @Desi Kid – I am not a token Asian who has been "wheeled out by Shift MS." In fact Shift.MS and nobody else on there knows I am Asian as there is nothing in my profile that indicates that I am. It wasn't something that had even crossed my mind when creating my profile as all I was interested in was chatting with other MS'ers.

    Nor did Shift MS even know that I was going to respond to the criticism levelled against them. I spoke up because I believe Shift to be a useful resource and a good initiative that should be encouraged and developed.

    I am a person with MS who is keen to know as many other people with MS as possible, whether they are white, black, asian or otherwise. That is why I am a member of a variety of social networks and MS-linked organisations. Yes, the design and the image of Shift could be more multicultural, but at the end of the day, just because there were no pictures of Asians doesn't mean I thought it wasn't worth joining up.

  • Desi kid- what are you upset about? You are the only ethnic minority group that has its own MS society. I personally find that quite annoying, why should there be an asian MS and not a black MS etc? and more importantly we all have the same disease and the same needs- we should be sticking together- a multicultural joined together MS society is better than one divided by ethnic backgrounds surely?

  • Re: "You are the only ethnic minority group that has its own MS society. I personally find that quite annoying, why should there be an asian MS and not a black MS etc? and more importantly we all have the same disease and the same needs"

    The Asian MS Support Group is not the only subset of the MS Society – there are also individual groups for the Armed Forces and LBG, and there are Jewish support groups advertised on the MS Society website too. This is because contrary to your statement, the needs of these particular groupings are slightly different, especially culturally, regardless of the fact it is the same illness. This doesn't mean that members and organisers in these groups segregate themselves from the wider MS Society, it just means they are able to offer support tailored to the specific requirements of their members. A good example would be in the Asian community, how to explain to someone whose first language is not English, what MS is and how to care for someone with it, as many Asians live in extended families where the older generation has no idea what the illness is or what its impact is. This support is better delivered by a specialist group rather than taking resources from a larger group for a minority of members. I'm sure there is nothing stopping any other ethnic or cultural or religious group setting up their own MS branch if needs arise and they have enough support from within their community.

  • @The Awesome MS Society – your ideas are really interesting and incredibly similar to our new website!

    If you'd like to get it touch I'd love to hear more of your thoughts.

    beki@shift.ms

  • Re: "You are the only ethnic minority group that has its own MS society. I personally find that quite annoying, why should there be an asian MS and not a black MS etc? and more importantly we all have the same disease and the same needs"

    You’re so right. I do think extra allowances are made for the Asian community in all manner of areas, including MS, is more than sufficient. The problem is that when I say something like that I will probably be branded as a bigot. I think that rather than the Multiple Sclerosis Society wasting precious finances in setting up an Asian sector, that money will be better off being ploughed in to research to actually try and stop this cruel disease for all MS sufferers.

    Re: “A good example would be in the Asian community, how to explain to someone whose first language is not English, what MS is and how to care for someone with it.”

    Well, I appreciate the problem being addressed, but I disagree that it is the MS Society’s job to do this, or to provide funds to facilitate this. Britain is an English speaking nation. The Chinese community residing here don’t ask for community-specific funding for MS related activities, nor do the black community. The British Asians, in my opinion, ought to be grateful that they have a fully-funded ethnic minority group with its own MS society.

    Re: “Yes, the design and the image of Shift could be more multicultural.”

    I’m sorry, but why should it be multicultural? Shift.ms are not a race-relation organisation, it is a social network for people with MS of all colours.

    I’m sorry if I come across as somewhat curt but to be thought of as “liberal-racists” because Asians don’t feel represented in terms of imagery on MS websites is pathetic. It makes me cross that you all feel so outraged by such an insignificant element.

  • Re "British Asians, in my opinion, ought to be grateful that they have a fully-funded ethnic minority group with its own MS society."

    Your tone is probably why Asian's with MS feel so left out. I don't think it is right to force anyone with MS to be grateful for the help they receive. I'm sure Asians with MS have a more problematic path to negotiate than both you and I. It's a very specific culture with its own set of values and heritage, not to mention language.

    I have noticed that the British Asian community is massively active. I admire them greatly. When I listen to the BBC Asian Network's English language content, it strikes me just how forceful a movement they are. I think that some of the disgruntled young Asians with MS who are leaving comments here and Beki from Shift.ms should get together to try and create a new organisation for young ethnic people with MS. Judging from the writings of commentators like "An Asian who has a sister with MS" and "British Asian with MS", you're very intelligent young people who can create something to take notice of. Why not get together and create something multicultural and "cool", as you all say?

  • There is an overwhelming sense of xenophobia I’m detecting on this particular post coming from all sides.

    I work with an Asian girl whose brother has MS. She looks at this blog a lot and e-mailed me a link to the debate that was happening here. I think she found this arbitrary back and forth amusing, but I just find it bemusing.

    I don’t really know anyone with MS and I’m not too clued up on the condition, other than the fact that it’s a horrible disease.

    I do hope that some better efforts are made at including ethnic minorities in the MS agenda and that Asians, blacks, Orientals; etc can find a way of making their voices heard within the MS community.

By Prof G

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