I have a new superpower: A while ago, I posted... - LUPUS UK

LUPUS UK
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I have a new superpower

whisperit
whisperit

A while ago, I posted about the power this condition apparently gives me to read clinical reports by telepathy (you know, the way doctors assume that you have no need ever to see the report of your latest test or assessment). Today, I have discovered a new superpower. It isn't just my illness that is "invisible", it's *me*!

Being an awkward cuss, I have always been partial to a demonstration or protest. This illness has made it difficult to get to any direct actions and this has been a great disappointment. Today, though, the action came to me, with a march on my local high street. Exciting!

Turns out that marches are not mobility scooter-friendly. Within seconds of joining the column, I found myself overtaken by literally everyone, so I ended up trailing at the back, behind everyone else. When we stopped for speeches I hoped to catch up and chat with some friendly faces. But no luck. Everyone stood to face the speakers, and again I found myself staring at a wall of backs.

As we broke up, I hoped for a couple of informal chats. But of course, in a mobility scooter, it's impossible to weave one's way through a crowd and join the little knot of people one recognises. You have to hope they will come to you - and that requires you to be visible!

So I sat there, evidently invisible, for half an hour and then scooted home.

There's nothing in this experience that other disabled people aren't entirely familiar with, of course. But until things change, it's a point worth repeating. It's all very well saying that you are inclusive and anti-discriminatory and all that. But for it to mean anything, you have to make a deliberate effort and DO something to include the invisible amongst us.

Can I hear an "AMEN"?

24 Replies
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Secular but vehement “Amen” from me xx

Amen. Is there a horn on the scooter!

Have a great festive season and may good things happen in 2019. Best wishes Kevin

whisperit
whisperit
in reply to Kevin53

Yes, and a headlight. I'll have to learn Morse code.

Have a great Xmas, Kevin x

Amen Mike! Maybe you need a cape and to wear your underpants outside your trousers like other superheros? Maybe that would get you more attention?

I know the feeling of invisbility and i'm not in a scooter. merry Christmas :)

Yes, it's not easy is it? Have a great Xmas x

AMEN 🤝✊✌️🎄🥂🍾❤️🍀

Amen to that!

If you've got the inclination, please read/follow Melanie Reid. She writes a regular piece in the Saturday Times, largely based on disability and its multiple issues/challenges. Totally relatable on a number of levels and one of the most astute writers I've come across in a long time. Think you'd enjoy … same page and all that stuff.

BTW, love your posts. Just wish I was reading your literary offerings in a different context, for your sake.

Wishing you all the best for 2019.

thanks, I will definitely look out for that. My first job after college was as a live in carer for a bloke with paraplegia who was very active in the disability rights movement. I moved on and kind of forgot a lot of that stuff, but here I am 40 years later and it's all come back to me....! Thanks too for the kind words. Enjoy Xmas! x

It's an eye opener isn't it Whisperit being at a lower level to everyone else in a wheelchair or mobility scooter!. Good for you not giving in!. I hope you have as happy a Christmas as possible and a healthier new year. Thanks too for your help and info re adrenals. Appreciated it. X

whisperit
whisperit
in reply to misty14

Thanks misty. Yes, short of actually tugging at people's sleeves like a child, one is dependent on them looking down and making an effort to include you. Thanks for your support this year too. Have a lovely Xmas x

Hello whisperit ,

What an unpleasant experience. I admire you witty comment about learning morse code. Perhaps we would need a fog.horn and landing lights. to be noticed. From one invisible to another please keep up the fight.

Best wishes x

whisperit
whisperit
in reply to spzgirl51

Thanks spzgirl51

Hopefully Aldi will have foghorns and landing lights on sale in the new year x

Definitely too much posturing about and not enough of the living ones principles on everyday life. Sorry you had to experience this x

whisperit
whisperit
in reply to Treetop33

Thanks, yes. But I don't want to pretend I was any better before this happened to me - we live and learn, don't we? x

Treetop33
Treetop33
in reply to whisperit

'Tis true, we don't always get it right. But I've never encountered such a huge dissonance between aims and everyday behaviour as exists right now. Almost as if empathy itself has been short-circuited.

But anyway, hope you get some rest over the holiday season x

Oh whisperit...I hear you...and I see you (well, virtually, at least 😉).

What we need is a design genius who can research and develop eye level transport...with all manner of horns, lights and flashing gizmos. And an automatic prod stick (electric shock included) for attracting the attention of all who refuse to see (or move out of the way). Maybe start with the penny farthing...

It's a good job you have humour to carry you through...though a sad indictment that it should be necessary.

Every time I see someone scooting along (in any shape or form), I always say hello. Many smile and stop for a chat...but expect some think I'm just plain mad...

Hey ho...charrrrge...🦏🦏

(Note: nothing suitable in my emoticon world (🤦‍♀️🤬) so improvise with these 🛹🛴🛒🛒 🙃🤣

Amen.

whisperit
whisperit
in reply to Foggyme

Excellent selection there, Foggy. You've definitely spotted a gap in the market with the electric prod. x

Amen , I think on Christmas Eve you should go down the street again flashing your headlight and honking your horn shouting merry Christmas everyone , that would get there attention , people just don't have any Christmas spirit , well most anyway obviously there are good people out there who take the time to help the disabled , homeless or lonely elderly people , there's a thing on the TV where people are offering their time to just ring a lonely elderly person not just at Christmas but all of the time I keep meaning to sign up . I hope you manage to have a good Christmas and that 2019 brings you better times x

whisperit
whisperit
in reply to Buffy14

Thanks Buffy14. I'm not sure that wouldn't drive people even further away, mind :D lots of good wishes for your new year too x

Amen to that!! Im getting a new wheelchair tomorrow which I have resisted for a long time.. unfortunately I do need it now!! When standing up I'm nearly 6ft and I find it hard being 3ft in the chair but hey-ho crap happens!! It is easier giving eyeball to the little people though who always seem bit more nasty somehow.

I hope that you are a responsible driver on your scooter coz some people who use them seem quite boy racery!! Xx

Yep, there's no point fighting it if it means you get a bit more freedom to get out and about. My scooter has no go-faster stripes, so boy-racer status is denied x

Bummer. You’d think enough had been learned by now. Still, as you say, better that housebound. I think there should be a law whereby after two warning blasts on the hooter, giving those in the vicinity a chance to let you past, you can follow up with a taser.

BTW I’ve just checked I wasn’t dreaming. Maynards sell winegums in black and red only. I seemed to remember you would like that x

whisperit
whisperit
in reply to Lupiknits

Excellent Lupi. There was a time when they even sold red and blacks only in those little rolls, but they disappeared. I will try and track these down, thanks ++ x

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