If I had a Christmas wish it would be to see us reclaim
'independent living' from a term that seems to mean 'living alone'
back to what it should be - being able to live the life you want to
live and be supported to do so.
I have been working and pushing for change for over 20 years and
this Christmas I have the wish that we can not only help more
people gain access to personal budgets but change the way we all
think and talk about independent living.
I am self-funded so while I don't have a personal budget in the
sense it is provided for me by the local authority, I have control
over my own budget in the same way. Yes having this control is life
changing - but it's only life changing because it is the tool I use
to be able to live life the way I want - to live independently. I
don't really think about it - it ticks over in the background. What
I do notice is my quality of life. The things I can do that I
wouldn't be able to do if I didn't have it in place.
You could say that it's something you don't notice when it works
as it should - you only notice it's value when it isn't there.
But from my point of view, it's just the tool that I use to live
my life. And that is what I want everyone to focus on this
Christmas. Not on personal budgets, not on the tools we use, but
enabling more disabled and vulnerable people to life a truly
independent life, in the real sense of the term. Not the way that
councils and institutions have changed it to - to almost mean
someone living on their own - but to mean having a full life. A
life like anyone else. A life that is the way you want it to
Sadly, this isn't the case for everyone. Many people fail to get
the right tools in place, or are being denied access to these tools
to be able to live independently. They face bureaucratic obstacles
and barriers that often end up frustrating people so much, they
simply give up and accept whatever they are given. Others get so
frustrated they snap - I call this the 'Falling Down' moment from
that movie with Michael Douglas. I often think that movie sums up
how many people who are simply trying to live a life most take for
granted feel when they face barrier after barrier, or aren't given
the information they need to be able to put in place the tools they
So if you ask me what my Christmas wish is, it's to change this
view that independent living is something different, something just
for disabled and vulnerable, to meaning living a ordinary life,
just doing what you want to do and not having to think about it.
That's really being 'in control'.