Rainbows (Girl Guides) - all my daughter wants for Christmas is to be included in your organisation.

[TwinkleChristmasStar]

Hi, my 6 year old daughter has been attending her local Rainbows unit since January. She has Type 1 Diabetes and Coeliac Disease.

In October she was invited to the ultimate event for a 'grown up' Rainbow - the Sleepover! Of course she wanted to go. We, and her medical team saw no reason why she could not attend. The venue is just 13 minutes away from home (the usual Rainbows meeting place is 9 minutes away).

The response from the Guiders when we said she would like to attend, was that DD was a "horrific responsibility," and that we had been expected to decline the invitation.

We are now nearly 3 months into the complaints procedure. We have offered numerous ways we can help facilitate our daughter being included, including us staying close by (there is no room for one of us to stay on site), doing her medication, providing food, being on call etc.

Our first complaint got upheld, however, we were told that DD still could not go on the sleepover :(

The complaint report also revealed other failures such as no risk assessments for weekly meetings.
We have made subsequent formal complaints of a Failure to Make Reasonable Adjustments, and of Disability Discrimination. These to date have been ignored.

At no point has anyone asked what our child's needs actually are.

Since all the complaints went in, there has been a further incident. We phoned to check that it would be ok for DD to attend the last meeting before Christmas, given the issues surrounding weekly meetings. We offered to stay either on site or close by. We were told by Girl Guide HQ that the meeting was cancelled due to a leader being ill. The story did not add up. I was passing the meeting hall on the way home, and so I pulled in. Within a few minutes, some leaders arrived, followed by the Rainbows, and then more leaders. It appears that DD was purposely excluded.

There is more detail about all of this here on my Blog.

We realise that as a whole Girl Guides can be inclusive, however after nearly three months, nothing has been resolved, and our complaints remain unanswered.

Our daughter is incredibly brave. She does not deserve to be treated like this. She just wants to be with her friends at Rainbows. We also hope that we can prevent this happening to any other child in future.

Virus would you accept your child being treated differently from everybody else because the person treating them differently was a volunteer?

Why is it being a pita to expect the minimum any other parent expects for their children?

What is a pita is ignorant people thinking that we or our children should be treated any differently.

The fact is the leader or the GG haven't been able to put their side across on here so we just have the OPs version. A one sided version is just that, one sided.

It seems as long as the OP gets her way it doesn't matter that the volunteers are forced into doing something they are not comfortable with medical wise and should shut up and put up. Equality only seems to go one way then.

As a parent, if you know somebody has confessed they are not comfortable with caring for high medical needs then surely you don't force them to? Who would do that. Yes fine to ask if another group has a volunteer willing to assist but not force anybody. Slating them all over the net won't be building bridges either.

Did accessible loos and buses come about from meekly sitting writing letters?

Disability is routinely ignored or dismissed because it's uncomfortable or inconvenient.

Accepting that the leader is at fault and made some very bad choices that should be rectified (which I do) is not the same as agreeing she should be subjected to a social media witch hunt.

This is not some faceless cooperation. A social media campaign against a shop will push them into action for fear of loss of revenue and reputation. We're talking about a person here. As badly as she may have behaved, is it really right to enter into personal and public attacks?

Of course, perhaps my judgement is coloured by my own experience of seeing a friend's life nearly destroyed, in similar circumstances, after a series of bad decisions that though unfortunate, were not actually intended badly.

I do take the point that if there has been no response to the formal avenues of complaints, you're left with few other options. I am just very uncomfortable about the potential (and possibly long term, as was the case with my friend) effects of a public campaign on this individual leader. I don't see how this will actually resolve anything either.

The OP hasn't tried to force anyone to deal with something they're not comfortable with. She's offered to be within a few minutes of the sleepover.

As for the OP 'getting her own way' that would be expecting a national organisation to adhere to the Equality Act 2010. Too right she should expect to get that way.

Or is it ok to break the law if you find sticking to it inconvenient?

There is no named individual, though. And it's no longer against one person, it's those who aren't doing anything at district/national level after the complaint was upheld that are also the issue.

Sorry. 10, not 5!

Slubberdegullion great post at 10.02

viruswithhold with all due respect, RTFT!

Plus a blog post, even if shared on social media, isn't a campaign.

TwinkleChristmasStar Would you mind saying which County you are in? Or which Region?

In the Facebook campaign, there is no way anyone close will not be able to identify those involved. It won't stay anonymous. These things never do.

It seems as long as the OP gets her way it doesn't matter that the volunteers are forced into doing something they are not comfortable with medical wise and should shut up and put up. Equality only seems to go one way then.

Have you RTFT? The bit where op offered to stay mere minutes away from the sleepover & be on call for her daughter? Or the bit where the op's daughter was excluded from a meeting & the op was lied to & told it was cancelled? Or about how she & her dd's medical team have offered training, or she has offered to stay on site during meetings?

"Ideally, yes, we would like DD back in her group, with her friends, and attending the sleepover with someone we trust who is happy to work with us to ensure DD has an enjoyable experience whilst being cared."

Unlikely (I would possibly say impossible) for the mutual trust to be re-established between leader and parent in this situation.

The answer would seem to me to be to change Rainbow unit.

As a parent, if you know somebody has confessed they are not comfortable with caring for high medical needs then surely you don't force them to?

And they have actually done no such thing. They haven't said they didn't feel comfortable, perhaps if they had, op wouldn't be here today, looking for somewhere to vent/get advice. Instead they lied, insinuated that her dd wasn't welcome on the sleepover "oh we thought you would decline" (paraphrasing) is not the same as admitting they couldn't cope.

Several posters have mentioned they saw the story on Facebook before reading this thread. Word is obviously getting around. And its being shared here.

But I've explained why I personally feel this should have been kept of Facebook. Take my argument for what you will, I know I'm not likely to convince many here. That's alright. I just hope some will consider the possible wider implications of sharing these things on Facebook.

Again, I fully agree with the OP on the issue itself.

The op just wants her child to be included and for her to be treated with courtesy and respect by having her complaint dealt with in a proper and timely manner. She just wants her daughter to be treated the same as everyone else - ie able to join in with activities, exactly the same as the group does for every other child where they automatically adjust the activities to be age appropriate or weather appropriate. Rainbows don't go on all night hikes in the woods or swimming in the sea in January and they find other things to do. It's really not that hard to be inclusive and still have fun.

If this had been going on for months now. The op has not caused the delay. She is understandably fed up and taking matters into her own hands because the other option is to give up and that would tacitly imply what has happened is right when it is not. Sometimes you need to fight for what is right and thank goodness the op is able to do so.

Still, it's nice to see some actual rainbows on the thread :)

Twinkle I admire and commend your strength and patience you've shown in this. This is how many people have fought for inclusion over the years.

I tried for about a year with the Rainbows with my DD, and I tired of similar repeated lines and lies about communication and events (the 'didn't you get the call' got very obvious and very old very fast - I'm in all day all week and they knew it because I'd told them so and we have an answer machine) and faced with bullying and exclusion (which we saw first hand since we don't drive and have mobility disabilities so either DP or I sat out front each week - and we were told that they had plenty of volunteers, made very clear that we weren't to attend the monthly church events - and going to several other events and having no one else shows up time and again and we find out it was changed at last minute again really got DD). We kept trying, kept getting rebuffed and assurances of calls, tried going up the chain and wanted it to work, but - too late I feel - DD could no longer take it, she felt that they all hated her and something was very wrong with her by the end of it, and we tired of her coming out in tears and having the leader say to us as DD is sobbing right there that she is not crying and that everything is fine when it clearly wasn't and trying to put a good spin on bad events for her, so she chose to leave and I was glad as I had little energy to fight it further.

Thankfully she is much happier in St. John Ambulance as a Badger and they have been happy to have her and to have our help. She and her siblings are thriving there, but DD is still so very nervous about upsetting people and them turning on her after what happened in Rainbows and she still talks about it sadly almost 2 years on. One leader whose priorities weren't with all the girls has had a very big lasting impact on my DD and I'm glad others have the strength to fight this where I could not.

There are many great Girl Guide troops and leaders and they do a great service - that doesn't mean the volunteers that show they aren't well-intended to every child shouldn't be pulled up on it. Bad apples ruin the entire bunch and discrimination not tackled in one place affects us all. Being lied to about the event crossed a major line and is a huge red flag in my eyes, though we don't know if the leader lied to the person Twinkle talked to or if the person Twinkle talked to felt that that was best for some odd reason.

I am appalled at some of the attitudes on here!
I hope things get sorted for your DD in the new year OP.

Lots of people on Facebook, including me, who have no relationship with the OP or leaders have worked out where the unit is based. The leaders have been made very visible by the OP who did all but name them, but sees no reason for the leaders to have a valid concern about dealing with her in the future.

Do you not think the reason it is all around Facebook is because (much like this thread) people can see it is wrong?

If it wasn't so outrageous nobody would be sharing it.

Who is responsible for the outrage? The GG for not sorting it out properly. This is a common problem with voluntary organisations and it really hacks me off because this stuff is so basic. Basic complaints handling is really just common sense but so many organisations just seem to hope problems will go away.

Blogs get shared on social media all the time. Some are part of campaigns, some aren't.

One thing that blogs have done is give parents of disabled children a voice. Made us realise we're not alone, to give and receive support to each other and to share ideas and experiences.

This is an experience that a parent is sharing with others. It shouldn't be silenced because it makes an organisation look bad. For the organisation to look bad someone needs to have behaved badly, anyway.

This is heart breakingky appalling.

My son has an invisible disability (high functioning autism). They wanted him to have someone come with him to see whether it worked better. I now pay £15 weekly and had to find someone who was experienced to do it.

I'm alright with an organisation being made to look bad. I'm not alright with individuals being publicly vilified.

The answer would seem to me to be to change Rainbow unit.

Possibly, but that doesn't mean that the leader should get to discriminate freely. What of the next child who has additional needs?

Why should disabled children/parents of disabled children have to think twice as to whether an activity is suitable, why can't they have the same rights/access as my child, or my nieces & nephews (yes, I understand provisions need to be made sometimes, but this is nothing new)?

We constantly teach our children (well I do anyway) that everyone is equal. I condemn bullying against & by my children. So why is it OK for an adult & an organisation to discriminate against a 6yr old?

Perhaps it is time for the organisation to review it's policies & make sure all their leaders get adequate training on some disabilities in order to make the groups fully inclusive.

From their website

"We put girls' voices at the heart of all our work. We strive to empower girls and young women to speak out and claim the opportunities they deserve." - Giving girls a voice

"Amazing women inspire girls with their talents, intellect and achievements every day. But we know from our research that too many girls suffer from the shockingly low representation of women in top positions across public life. Our interactive tools and resources highlight the women who encourage and support girls to achieve anything they want to" - Inspiring women (although the leaders don't sound too inspiring)

"Rainbows is all about developing self-confidence, building friendships, learning new things and having fun" Except if you are disabled, then we will exclude at will.

Do you not think the reason it is all around Facebook is because (much like this thread) people can see it is wrong? Exactly! Word of mouth fails when people don't believe in the issue/don't see the injustice. People are obviously concerned about this, which is why it is gaining pace on facebook!

I am a Guider and have led various levels over the years including Rainbows. Those who have posted that this DD fully deserves to be included as all other children are completely correct. It is awful that the leaders did not make this their first thought. I do have to say though that I have known a few girls who have had personal or medical/dietary difficulties and occasionally my first thought has been "if X is coming we'll need to do it differently. I'll approach X's parents and then plan once I know".
We have also stayed in venues where there has literally been only just enough room for the leaders and some of the girls and we have had to operate a first to sign up system for the girls. If there is little choice of venue it may be a case of take the small venue available or don't go. And I'm not in agreement with a PP that a group shouldn't do any activities that one girl really cannot do.
There are a couple of points that I think are worth emphasising.
GG HQ is staffed by employees but all the intermediate roles are volunteer roles and all information and decisions need to be confirmed at all these levels by people with full time jobs, their own units and families, and limited time. It's fair to expect equal treatment as from a company but not really fair to expect lightning quick responses as from a commercial organisation.
The DD in question only has a limited time in Rainbows and another local unit will no doubt welcome this girl (especially with a parent willing to stay on sleepovers) and provide a genuine Guiding experience.
And finally some units may provide Guiding in name and yes they are run by volunteers and may close without the volunteer BUT they may not provide GOOD Guiding which is really our aim. I am not saying this unit is that bad but I have heard of a few units that are probably better off closed, plus some where the leaders need to take another look at the Guide Laws.