The Sunflower Lanyard Debate…..

 Well the sunflower lanyard sparked debate on Twitter this week…..I love a good debate on Twitter with playmates especially as long as it doesn’t get personal…..so I’d thought I’d reflect on my experience and my thoughts on the debate……what I say may spark more controversy, more debate….but at least it will get people talking…..

Yes I’d love to live in a society where I don’t have to wear a lanyard to highlight I might need help , where everyone understood,  but we don’t, simple as that and we’re such a long way from that nirvana…..if it will ever exist.

If we don’t highlight in some way that we need help, how will people realise? Staff are often too busy to pick up subtle cues of confusion, of need, so at least a lanyard stares them in the face and might make them think – not all staff have ‘got it’ yet, as I’ve experienced, but those who do, have showed me nothing but kindness. When stressed on a journey, kindness is what I need to reduce the anxiety and if a lanyard provides that kindness, so be it.

Not everyone is strong, is confident, is verbally capable of stating their needs, their Rights……some people need that crutch to help them in their daily existence. Something visible for others to see. If you’re not one of these people simply don’t wear it…..and that’s fine too…

Not everyone needs to wear it. Some people feel empowered not wearing it….both totally fine…

I travel this country extensively, on my own, trying to remain independent ..but it doesn’t come without immense challenges…..i rely heavily on the k8ndness of strangers. if a simple lanyard can help me then I’m glad I’ve found them.

The lanyard doesn’t diminish the Rights we have. The lanyard doesn’t highlight we have dementia, so we’re not labelling ourselves as such. It’s for ANY hidden disability, and that’s why I like them. It simply highlights the fact we’d like your help and understanding and might need some extra help.

We mustn’t create a two tier system within people with dementia themselves , how sad that would  be….it exists already in the form of some groups have louder voices –  , the poor, the black & ethnic minorities, the travelling community, LGBT, and soooo many others being far quieter …but we’re desparately trying to rebalance in so many areas.

Not everyone wants to go public, wants to speak, has the confidence, they have no desire to speak out…and that’s fine, that’s their choice ………but we shouldn’t make people feel bad for wearing a lanyard, if it  makes them feel safe, feel able to travel, feel able to go out into their own community, surely that’s a positive….?

As a playmate said on Twitter, ‘its an education tool. It can start conversations’….that for me is the bonus. Of course I’m a person before the dementia, but sadly it follows me everywhere, clinging to me like the proverbial limpet all the time, so I’m more than happy to say, ‘I have dementia, can you help me?’…I’ve often found that elicits questions, starts a conversation……..

It’s certainly started an interesting conversation on social media.

One person questioned whether the wearing of the lanyard might make us vulnerable to those that might take advantage of us….but we’re not highlighting the fact that we have dementia, we’re highlighting that we have an invisible disability, so for me the advantages outweigh the down sides. And in life in general, those of us living with dementia expose ourselves daily to those who can take advantage of us, especially those of us who speak out.

 I sometimes can’t think quick enough to say I need help, I sometimes don’t realise quick enough that I need help so the lanyard is hopefully a visible clue to staff.

 What would make me very sad is to see people with dementia creating 2 camps, one criticising the other for wearing or not wearing ……we have enough to cope within society, we don’t need that criticism amongst playmates as well.

I’d like to think we would all respect each other views, each other’s preferences, after all that’s just what they are, our views. Yes its all about choice….and I’ve chosen to wear it and promote it, because in my humble opinion, it will make a difference to many…..

 

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

27 thoughts on “The Sunflower Lanyard Debate…..

  1. Hello Wendy

    I was at Crutched Friars yesterday for the London and South East Conference.
    Keith Oliver was wearing his Sunflower Lanyard and told everyone present what
    it was
    A very good initiative

    Barbara with best wishes.

    Keep well
    Barbara

    Sent from my iPad

    Liked by 1 person

  2. Dear Wendy, thank you for wearing the lanyard! What I think? It‘ s me, the person without dementia, who needs to see the lanyard. How else will I know, in this hasty world, if I can be of any help!

    Liked by 1 person

  3. Well said Wendy – I completely agree. As a member of the public I’ve only become aware of these lanyards through your blogs, but will now keep an eye out for people wearing them. 🙂

    Liked by 1 person

  4. Wendy I think it’s a great idea & I wish it had been about when my mum was first diagnosed with Parkinson’s. As soon as I come across one I will buy it & wear it with pride. Luke you say, if we don’t make it obvious that occasionally we may need a little help or time how will anyone know we are happy to accept their help.
    I will also be helping anyone I can that needs it too. We all need to support each other on our good & bad days.

    Liked by 1 person

  5. Hi Wendy, Thank you for all you do for people with dementia, including wearing the sunflower lanyard. You are an inspiration and are helping to raise awareness of hidden disabilities.
    My husband has early onset FTD and doesn’t travel alone anymore, places with lots of people are very challenging for him. However, when we do travel together he wears the sunflower lanyard and it’s been very helpful, especially in UK airports. When we were in France recently they didn’t recognise the lanyard but we found a hand written note, written in French and explaining the situation did the trick! All the airport staff were excellent.
    I guess my message is, there is hope, dementia is not the end of the road, we just need to be brave and ask for help when we need it.
    Again, thank you for all your good work Wendy.

    Liked by 1 person

  6. We all do what can enable us individually. It should be about personal choice not right and wrong. We don’t have to wear a lanyard we CHOOSE whether to wear it or not Recently, conversations seem to be getting very corporate in nature moving away from individual experiences to a one size fits all discussions. May be its me, I don’t know

    Liked by 2 people

  7. As a person with a family history of dementia, and as a member of the general public, I see the benefits of the lanyard for both sides. Especially since it is generalized to all invisible issues, and is totally voluntary. Hope its use and meaning become world-wide.

    Liked by 1 person

  8. I heard about the lanyard through your blog and mentioned it to my adult daughter who was recently diagnosed with autism. She thought it would be great for her; she probably would keep it in her pocket, readily available to wear if she felt the need. She can find it very stressful talking to strangers so it would be a very useful “prop” for her. I’m sure that as more people wear them, more people will understand what they represent. I also think that it could help many people with hidden disabilities in their dealings with the police, for example. Thank you for raising my awareness!

    Liked by 1 person

  9. I’m in America and I have never seen these. Personally I think it’s an amazing idea and wish we had them, as I would gladly help if needed. You are an inspiration Wendy, keep up the good fight!

    Liked by 1 person

  10. I find the lanyard a useful idea, as one as yet without dementia. However being recognised can be a two edged sword, as my experience with students with visual impairment relates. With a guide dog or a cane or a lanyard I suggest, sometimes, its no longer an invisible disability but one where other folk decide they know what help is required and one can be propelled across a road and dumped, when all you were doing was waiting for a friend.

    The lanyard needs to be recognised as an “ask if i need help? ” then that tells the member f the public how to approach and to accept the answer “No, thank you, I’m fine just now, just waiting for a friend…. ” So some might want that woven into the lanyard. “Please ask If I Need Any Help?”

    Alternatively some advertising next dementia day focussed on this (pic of lanyard) means ask if i need any help, would reach many more of the public to no detriment to any who choose to wear it.

    Liked by 1 person

  11. So well said Wendy and brilliantly out as always. You are so right, wearing a lanyard is a choice. I like you have had good and not so good experiences but I will continue to wear mine. Last weekend when I was in The Hague and travelling home from Schipol airport they had a leaflet about their scheme of having a lanyard to represent people with hidden disabilities. I asked if I could have one and lo and behold it was our sunflower lanyard, so it is in use there and I had fantastic service and help. So each and everyone of us that has a hidden disability have the CHOICE of wearing one when we travel or are out and about or not. I know that Sainsbury’s supermarket use it and recognise it. Once again thank you. xx

    Liked by 1 person

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