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.
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