Why I'm doing the challenge

Hello friends,

On Monday I'll be halfway through the challenge, so I thought I'd share a little about my motivation.

Regular readers will know I started this year long challenge because of a conversation I had at work. You'll also know I work for Contact a Family, a charity that supports families of disabled children. They do lots of things, from providing advice and information, to campaigning, to organising family trips and supporting more than 150 parent carer forums across the country to influence local policy making. They are pretty awesome and I'm proud to work there.

What I don't think I've told you is why I care so much about this issue.

As a small child I lived disability as a part time sibling. I've spoken before on this blog about my mum being a bit of an inspiration, and certainly one of the things that has shaped my life and my attitude to disability came from her.

I don't know how many of you know about family link caring? Basically it works like this. Children with complex needs, often need more care than other children. What this means in practical terms is that their parents, and other family members take more time undertaking tasks to keep them safe and healthly. Politically that's why we use the term parent carer to talk about parents of disabled children. Because over and above the stuff you need to do to parent every child, there are addittional caring responsibilities, often involving a huge level of skill. And this means that parent carers can get tired, and that children with complex needs get less time away from their parents than other children their age. If you think back to your own childhood you'll realise that some of your funniest and most meaningful memories came from times when you tested boundaries, made mistakes or just tried something that felt alien to you. And I'm prepared to bet that a good proportion of those memories were made when you were at friends or other family members houses and your parents weren't there. As children our parents are structure - and we need time away from them to understand ourselves as individuals. So family link carers basically offer the opportunity for children with complex needs to have that experience of being away from home, by opening up another skilled carers home for regular days out or overnight stays. 

In our case it gave C & K (the two girls my family were linked with), the chance to hang out with other people and be more independant. It gave their parents a break from caring. And it gave me a unique understanding of the barriers that disabled children and their families face accessing, well everything really. Two weekends a month if we wanted to go swimming, or to the shops or the park, we could be out of the door in 15 minutes without thinking, and the other 2 we couldn't. We'd have to consider what play equiptment was accessible to C on her wheelchair (clue: none), wether there was even adequate paving so her chair didn't get stuck in the mud on the way to the park, if the swimming pool had a hoist, we'd have to make a plan for where to park in our small town so if we 'popped to the shops' we actually could get into most of them.

And if anything it was more difficult with K who didn't have mobility needs, but was a wonderful (if a bit sweary) girl with Down's syndrome. Where could we take her where she wouldn't be asked to be quiet, or expected to stay still for longer than she could manage. Where could we rely apon other children to be kind and accept her exuberant offers of friendship, accompanied as they were with too tight hugs? Where mothers and fathers didn't either quietly move their children away, or talk about her as though she was a lesson in her hearing? K did have a learning disability. It didn't mean she wasn't smart, or that she wasn't sensitive to peoples emotions - she was both of those things, and being constantly made aware she was different by people around her (even the kind ones) hurt her feelings, and ironically brought out in her the kind of behaviour that people feared.

It was crappy. And yes it was the 1980's, and some things have changed. But not enough. When I talk to young people, the parents and to siblings - the stories they tell feel achingly familiar and all the more devistating for being lived all year, rather than just a couple of weekends a month.

For me as a child, the natural thing would have been to resent these more highly planned, less free weekends but two things prevented that from happening. Firstly I genuinely loved C & K. C was kind and gentle and really happy to let me dictate the pace of play, and K was was wild and brave and taught me swear (one of my greatest talents to this day). And secondly my mum redirected my frustration and anger where it belonged, not at C & K, or at her, but at the society that forgot that disabled children existed when it planned parks and leisure spaces, that didn't teach children and adults to be welcoming to and accepting of difference. That shrugged it's shoulders and said "it's too difficult" when asked to releive some of the caring responsibilities from parent carers so they can enjoy some time just being parents, or to consider the economic impact of raising a child who needs more care.

And I still have that anger. I'm still furious that families of disabled children are allowed to live in poverty because not enough is done to alleviate the addittional costs of raising a disabled child. I'm disgusted when I see public attitudes to disability, and read more about the idea of disabled people as scroungers than I do about the injustices they face, because we as a society choose not to pay attention.

It worries me that everyone I know knows someone with a disabled child, yet hardly anyone can identify disabled adults amongst their friendship group. Yes some disablities are attached to life limiting conditions (C is longer with us), but most aren't. So why aren't we all able to identify people with learning disabilities, people who are deaf, or blind, who have mobility needs amongst our friendship groups? Is it because those children that we know now don't get to play alongside other children, or sit by them in class, so as they grow disabled children have less and less contact with their non- disabled peers? Is it because the lack of adjustments made for these families isolates them, and what we don't see we don't care about, and so our children don't make those friendships and when they become adults they aren't motivated to stand with disabled people as say 'this is not ok'?

I think that's part of it. And that's why Contact a Family are working so hard to support families of disabled children to be less isolated, and to form communities of support. Because anger isn't enough. We need to take action to change this and the donations readers of this blog are making allow us to do that. To keep lobbying. To keep shouting about this. To keep giving families the information they need about their rights.

Together we've raised more than £2,300 so far, please please keep the donations coming. Because 6 more months of wearing the same clothes is easy (it's not. I'm sooooo bored), but a lifetime of isolation isn't. And it's preventable. Here's the link to donate  

This is a personal blog and contains my personal views, not necessarily those of any organisation I represent in any capacity.

The importance of warmth

So I mentioned a couple of days back that I’ve been feeling starved of colour for the last couple of months. 

It seemed to be like the easiest way to inject colour into my life all winter was to buy a colourful scarf. That’s easy to do right? Wrong.  I agonised over what to buy. Everyone knows that more choice leaves us less happy. In my case I have loads of choice, until I make the choice & then there is no backing out.

 All the choice and nothing to show for it or no choice forever (ok for 7 months – but it feels like a long time) =Torture. The challenge has delivered me loads of great things over the last 5 ½ months, but it’s also reintroduced me to my old friend indecision. And even though indecision and I have been estranged – she’s wormed her way back in there pretty successfully and is now my constant shopping companion.

Honestly. I’ve needed a scarf for weeks. I must have looked at EVERY SCARF ON THE INTERNET. I became a total scarf bore. I knew exactly what I wanted – I had a really clear picture in my head but I couldn’t find the real thing anywhere.

And what I would normally have done if I wasn’t doing this challenge was picked something ‘near enough’ to see me through until Plato’s higher scarf presented itself. But since I have to stick with whatever choice I make this year, I put it off. I went out day after day and night after night in my thin mac with my neck exposed until surprise surprise I made myself ill. 

I was a full on snot factory last week. It was disgusting. I had a sore throat, earache, blocked nose and all the associated headaches. My husband got no sleep at all as a result of my rambunctious snoring. And I don’t deserve any sympathy at all because I did it myself with vanity.

You know how Kate Moss once said ‘Nothing tastes as good as skinny feels?’ (at least the internet says she did. Kate if you didn’t I’m super sorry for mis- quoting you, and if you did – stick around – cos I think you’re eating the wrong food). I have a problem with that phrase – it’s patently untrue. I mean maybe if you eat in a really self punishing way potentially, potentially unsweetened granola with skimmed milk doesn’t taste as good as skinny feels, or a plain bowl of quinoa with no veggies. But mashed potatoes? Apple crumble and custard? Cheesy beans and waffles? They all taste at least as good as skinny feels as the hips and bums of our nation’s women will testify.

I know what I’m talking about on this. I got dysentery in Nepal 9 years back and got super skinny. And you know what? It felt alright – I knew I looked good in my bikini. But it didn’t feel as good as homemade peanut butter and chocolate sauce pancakes taste – which explains why I’d put it all back on within two years.

Anyway I digress. What I wanted to say is that I’ve come up with a new and much healthier saying, from what I’ve learnt from letting myself get sick out of vanity, and here it is:

“Nothing looks as good as warm feels”. And it’s totally true. On Sunday I realised that I couldn’t research scarfs forever. So I gave myself 15 minutes at Spitalfield’s market to find and buy one. And it’s not my dream scarf- but actually it’s pretty close and today all day I’ve been warm. Which is priceless.

Come on gang I made myself sick for the challenge that’s got to be worth some sponsorship?

50 shades of grey (alright 27 but....)

It feels like a while since I last did an honest to goodness clothes and fashion post. So it that's what you come here for then brilliant because today I'm talking about colour.

Last week I hit 5 months of my extreme capsule wardrobe challenge. 5 months in which I have worn only 27 items of clothing. 5 months of being paranoid every time I put something in the wash, of watching my smart, pristine clothes begin to look shabby & 5 months of being sensible with every single clothing choice I've made.

And here is where sensible has left me. Of the 27 items of clothing I've worn so far 25 are of what I would describe as a neutral colour, by which I mean black, white, grey, blue or a muted green or olive. Colour has all but disappeared from my life.And I look back over photos of myself over the last few years and I realise what a huge change this is, and I miss colour. In fact at the moment I almost mourn it.

me in grey

In the summer when the light was bright and clear everyday, when my daily walks on the marshes were filled with wild flowers showing off with their vibrant colours it was fine to be in neutrals. But now as the nights draw in, and the marshes settle into muddy feilds next to grey sky I feel invisible.

There is no contrast between me and the concrete streets I walk through, and somehow I feel smaller as a result, less vibrant and less alive.

me in grey again

I saw someone at Wednesday's event who was wearing the most amazing poncho in this gorgeous turquoise fabric and immediately headed over to talk to her, her choice of clothes cheered me up - but also gave me the impression that she'd be confident and bright herself (which she was). Do I then look mousy in my fog coloured clothes? Am I less approachable in these muted colours?

and more grey

and (yawns.........)

I know that bright colours make me happy come winter - I'm wearing my mustard cardigan almost everyday, and I know I feel more myself in it. I bumped into an old colleague on the tube a few weeks back, and she commented on the dark colours I was wearing, and how they were the smart choice, but not the kind of clothes she'd associate with me and they aren't the clothes I'd associate with me either. So with 7 months and 8 bits of clothing left I'm going to stop with the sensible (at least in terms of colour - I know I will need warmth). Bring on the fushia, the poppy red, and the turquoise - the noisy stimulating colours that will see me through winter confident and larger than life! 

So I'm going without clothes this year and struggling but parents of disabled children go without much more in order to ensure their children's needs are met, things like heating. The counting the costs report is here and here is where you can donate.