GUIDING/SCOUTING/D of E + HMS

[Jess]

I'm just a little interested who amung us are in Guiding or Scouting and who the Baden Powel world has treated them. Currently my County Commisioner cant work out why I come to some planning metting on a walking stick or in crutches and some times I dont have any. Thoughnmany time have explained what HMS is she just hasnt got to grips with it.

My Guides are brillent and so are the other Leaders but that could be because I have the only Disabled Unit in the country still known.

[Eloise]

I used to be in the guides, and then I was a helper in a local Rainbows group. But this was before I had a proper diagnosis. Although the people worked with were always great when I said I was unable to do certain activities because of my joints, they just took my word for it and let me do different things instead.

[EmilyG]

I am/was! Before starting uni I was a Young Leader and in the process of doing my adult leadership qualification. However, I ended up with an useless supervisor who really didn't have a clue, so I didn't get very far . Due to a bit of shuffling around in the Division, I couldn't get another supervisor straight away so I have decided to postpone doing it until uni is finished. I still go into Brownies in my holiday time as an adult helper and absolutely love it The Brownies are always inquisitive as to 'what's hurting today' or 'what I've done today' if I have a sling/crutuches etc, but they're great!

[Chloe♥]

I belong to a senior section group and... I can't tell them!
I think if I was still in 'organised guides', with lots of leaders and set activities I'd be able to tell my leader and it would be alright, but as senior section we're left to our own devices, except for the partial participation of a leader... Any prejudices or confusion that the girls have outside of guides would remain, I'm pretty sure.

I can see the majority of guide leaders being very understanding - or at least trying to be!
I've encountered lots of them, and they're almost all lovely - I think it goes with the territory.

[Esky]

I am a Beaver Scout leader and really am very lucky.

They know that occasionally i turn up on crutches or i cant do something but they accept it and i do what I can. For example we have a group sponsored walk coming up I know my knee wouldnt last so I stay at the beginning/end with the Juice and hotdogs. I think if there was not 4 of us to share the load things would be different.

The children understand that if I am on crutches then they have to be careful around me.

[loosebones]

I'm Little Owl at a Brownies near me. I've not been there long and when I turned up last tues in real agony, the brown owl turned round and said very flippantly 'oh, she's alright really'. I also get the feeling she thinks I'm totally brain dead and incompetent as I never get any paperwork, am not allowed to arrange any activities and am treated like a brownie. When I was in winchester the district commissioner was useless about understanding my condition. It appears to be the same here. All except for my wonderful friend who has known me for years and is a star when it comes to understanding.

[Otter]

I'm a Rainbow and Brownie leader.

[ClareM]

I've been involved in Guiding ever since I became a Brownie when I turned 7. I'm 36 now. I am an Assistant Brownie Guider in my village Brownie unit. I was Brown Owl for 5 years but, when my POTS & CFS got bad about 7 years ago, I no longer felt able to do all the organisation & admin so a couple of young women took over the running or the unit & I went back to being Little Owl. I really just turn up & help each week and organise the occasional activity. (BTW, Loosebones you are the first Little Owl I've 'met' other than myself!)

I was only diagnosed with EDS hypermobility type at the beginning of this year but I've had the poor co-ordination that goes along with it all my life and that did make life hard for me when I was a Brownie & a Guide. The other girls in my six/patrol always resented having me there when we played games that involved, running, catching a ball, etc. Fiddly crafts were also very difficult for me when I was little. I have enjoyed my time as a leader much more (Young Leader & then Brownie Guider). There are certain activities that I really can't do with the Brownies because of my various health problems, e.g. I'd find it too much to go on day trips, but I'm pretty certain that, apart from when they see me in my wheelchair or if I faint in front of them, the Brownies don't know/remember that there's anything wrong with me. I find this a refreshing change from the rest of my life.

I find that, when they first see me in my wheelchair, the girls tend to just come straight out with it and say "why are you in a wheelchair, Little Owl" to which I reply that I can't walk very far or stand up for very long without fainting & falling over. I did notice one of them just standing, staring at me with a look of alarm when I turned up in my wheelchair a few weeks ago. Whilst I was tempted to say that it's rude to stare at people because they're in a wheelchair, I decided instead just to explain to her why I was in it, which did the trick as she then happily got on with the activities.

I'm really sorry that some of you have had less positive reactions to your condition and especially, Chloe, that you don't feel that you can even tell the other senior section members. Girl Guiding UK aims to be free from those kinds of prejudice and tries to include people with disabilities but appears that some members could do with being reminded of that.

Love,

Clare

[Sarah-Mary]

I'm a Scout leader, I've been a young leader since I was 12 and I'm now an Asisstant Cub Leader. I don't have the time or energy to devote to being an Akela so this suits me just fine. My last two districts were absolutely fab, they understood when I couldn't come sometimes 'cause I'd had a bad day, or when I turned up on crutches. The kids in general are pretty good, like Clare said some of them just come right out and ask which is great. Others do just stand and stare, but I tend to just smile at them and they come out and ask too.
The only people I've ever had a problem with (and this sounds awful) are the parents. When they see me with my stick or crutches or whatever, they tend to bypass me and go speak to another leader, it's like I don't exist or am not capable! It really annoys me because they have no problem discussing subs or allergies or whatever when I'm standing on two feet.
I'm really sorry that you feel you can't talk to other Senior Section members Chloe. I'm in Network (Scout equivalent) and very rarely do I have problems with fellow Scouts. Occasionally I come across one who is of the opinion that I'm a faker and a waste of space, but are people like that really worth bothering about? Eh, no. There are some things within Network that I can't do - we took part in a santa run last year and I walked at the back - but there's always someone who'll stay with me.
In general things have worked out great, I now know when to stop as I was pushing myself too far for a while. The kids are wonderful - they decorated some of my supports so I was all colourful. I'm moving to a new district as I've just moved house, so I'm hoping they'll be as understanding as the previous one.

[Zosie]

I'm a young leader at my local Brownie Pack (the one I used to go to when I was little.) I'm supposed to be starting my Adult Leadership Qualification soon, but it doesn't look like I'm going to get a mentor any time soon.

The leaders at the group don't seem to understand the problems that HMS gives me, which probably isn't helped as I've never had to have crutches etc. This week, for example, they needed an extra person to play the game with the Brownies, that mostly consisted of getting up and down a lot and running around in circles. The other leader refused (for no reason other than she's lazy and couldn't be bothered) so I ended up having to join in. Then, when we had a pow wow, they sat on chairs and said as I'm 'young and healthy' I could sit on the floor

It's not that they've forgotten, because every so often I get asked "Your joints still bad?"

Compared to pack holiday though, the weekly meetings are easy. I've been three times now, each time getting worse (I've refused to go this year, but that's also partly to do with the fact I'm already on holiday, partly to do with the lack of lactose free food last year, and partly to do with the way they treated me like a kid last year. My role was less Brownie Leader, More Dishwasher.) I start off the week on no painkillers, and end it on just about everyone imaginable. They plan all these long walks and expect me to go on them, despite the fact I don't count as an adult according to the Guiding Manual. I don't think the camp beds and the cold help either.

The Brownies are quite sweet about it though They always try to cheer me up when it's bad.

[Sarah-Mary]

Zosie,
Have you tried telling them exactly what's wrong? If people just think you're having an off day or a bit of a whine, they're less likely to listen to you than if they know you have a medical condition. For years I never knew why I had such problems at camps because it took a long time to get diagnosed with HMS, but luckily before that my co-leaders were great - a lot of the time I'd find things that had to be done on-site, so I didn't go on the 5-hour walk or whatever, and they were fine with it. If they don't realise the full extent of your condition they're unlikely to think about the consequences for you.

I don't know the full situation here so I can't comment too much, but it sounds like the other leaders you work with see you as a skivvy rather than an equal, which is just ridiculous. I remember being a young leader in the Scouts and getting well hacked off when I was left to do the rubbish jobs. Do you have any input into the Brownie programme, or have you done any training? What I found helped a lot is to turn up with an idea for a 'themed night' - there are so many things to do. Base games and activities and songs around this one theme, I used to incorporate badgework into it too (kids love badges). It might make them see that you want to be considered an adult and not just another Brownie, and if they get that on board they should start little things like chairs when you go for the pow-wow. (I have to stand for mine but they make it as quick as possible )

As far as camps go, do you enjoy them apart from the comfort aspect? With regards to the lactose, again, if the leaders see you as more of an adult that should change too, hopefully you'll feel more comfortable putting suggestions forward about food etc. See if there are things you can stay and do on site, although I suspect that if you're not officially an adult in the eyes of the Guides you won't be allowed to stay on camp by yourself. Suggest ideas for the program which don't involve a lot of walking. I went for a two-week long camp last summer and had the time of my life. I have an airbed which I put inside my tent which is just sooooo comfy. I take my hot water bottle with me as well and fill it with the water left from the Cubs' supper! It depends on whether you're camping inside or outside as well, but there are always some adjustments you can make. If you drive you could always just go out to the site during the day and go home at night.

I'll be quiet now.

SM

[jennie-jack]

i am guider in charge of a rainbow unit. i think the kids are just used to me hobbling around now. the parents presume i have fallen drunk or something. you cant possibly be disabled at 27.

[Jess]

Hi all,
Soon to come out will be a HMSA necker. They should be ready at the end of November if anyone is interested. At the grand total of £6 each. Please PM if you are intrested in purchasing.

[Sarah-Mary]

Woop woop hmsa necker! Although I think I could make a blanket out of all the different neckies I have now...

[Jess]

hi guys,
Neckers have been made yet but will be ready by january at this rate with the postal service down. they are going to be grape purple and have the logo in white or black unsure yet.