At The Moment (15th February 2019)

I think it probably has been a good week – a productive  one at least. But it doesn’t really feel like it. Because for me the productiveness has meant I’ve had to be at home all day every day. I have managed to get out quickly all of the days apart from one but I’ve not been to CAB, writing or disability active.

There’s been contractors here all week sorting out my bathroom once and for all. They are here now laying the floor. It’s been quicker than I thought it would be (I had been told the work may go into next week) and it looks like it’s going to be good. There’s just a bit of debate at the moment about where the right place to put my shower chair is.

In related news I tried to take advantage of being in anyway to get the gas struts on my powerchair sorted out. But of course I told the tech any day this week, he choose yesterday and was delayed getting here until midmorning and less than 10 minutes later the contractor left as he hadn’t received my new grab rails at that point and everything else was better left until after the floor was laid today. Still, that’s the redesigned gas strut fitted now so hopefully that’s the end of those problems.

Also talking of my powerchair we’ve come to the conclusion the problem with the batteries was the charger. So I’ve bought the one they lent me. It’s one of those things where you say “I spent X for a second hand charger” and everybody is like “you’ve been ripped off, that’s stupid money, you should have bought a new one.” And then you point out that a new one is practically three times the price.

I’ve been reading, writing and crocheting this week whilst doing all my waiting in but as always I’m putting too much pressure on myself and I don’t feel like I’ve done enough. Because I set myself up to fail by deciding “I’m going to read a whole book, write 1000 words and crochet one blanket stripe each day.” and what actually happens is I read a book and a half, write 2000 words in total, start listening to an audiobook and decide to start a different crochet project. And feel like a failure.

Changing to the subject to thing I’ve been doing, Mum and I went to see a play last Saturday night. It’s called The Capital and is a 90 minute play with no dialogue. It stars 5 actors playing a lot more than 5 characters and uses moving walkways (travelators). It was good – much better than that perhaps sounds as it’s hard to describe – and I enjoyed it but Mum really loved it much more than I did. I personally felt that it needed a little explaining but she didn’t.

H is for…

H is for home.

Home for me is a flat in Didcot.  I’ve lived here for almost ten years and it’s cluttered and currently very messy in places.  But it’s brilliant.

It’s in the perfect location for me – close to town and right by the train station. I don’t need to get taxis to get anywhere which saves me a lot of money.

It’s fully adapted to my needs and was as it was built (I’m the only person who has lived here).  It’s not as nice as it was when it was first built and really needs a lick or two of paint in places.  But it’s also got a lot more personality then the empty shell I first moved in to.

But home is more than a place.

Home is a feeling of being safe

of being independent

Of realising that I can do things and go places and achieve them because living in an environment that’s fully accessible to me and has what I need (as well as a couple of very useful things I didn’t know to ask for but use and benefit from) has meant that I could stop having carers and also that I’m able to do things and go places and live – I have so much more energy in an accessible environment than I do in one where I can just about manage but it’s a struggle – like the flat I lived in before.

Most of all it’s my place and my space where I can just be

I love it.

On Volunteering and Housing Day

Today is #HousingDay (hashtag housing day) a day designed to promote social housing and highlight all it does for people in the UK, how important it is and just what the need for social housing is.

I know from my own experiences just how much having access to a flat that is fully adapted to my needs, is safe and secure (in terms of both safety and tenancy) and affordable is.  It’s more than a roof over your head it’s the ability to make plans and do things and get on with your life that might otherwise be impossible.

And in both parts of my CAB  role (adviser/gateway assessor and social policy coordinator) over the last few years I’ve seen more and more people becoming homeless, struggling to find somewhere to live that meets their needs either due to availability, costs, access needs or landlords who won’t accept housing benefit.

I rent from a social landlord – Soha Housing – to be specific and a few weeks ago they made me aware of a call from TPAS for residents who were willing to share their own stories of being residents and volunteering to work with their housing provider. I’ve been involved since 2010 and we’ve gotten to know each other pretty well. So knowing I like to write they asked if I’d be interested in sharing my story.

I wrote my story and it was pretty tricky. There’s no doubt that the volunteering I do – both for Soha but also for CAB – plays a huge role in my life and in many ways has changed my life.  Even taking the CAB aspects of my volunteering out of the equation there was still loads I could say about the matter and it was difficult to know what to include and what to leave out to make the point about why resident involvement is so important to me in just a couple of hundred words.  But I did my best and sent it off and Soha submitted it to TPAS.  And we didn’t hear anything about it.

Fast forward to this lunchtime and I went on twitter to discover that TPAS had chosen ten of the resident stories they had received to highlight and help promote Housing Day. Mine was one of the ten.  I’m really proud to have the opportunity and a bit surprised!  Two of my fellow Soha residents and friend Carole and Richard also had their stories chosen.  All ten of the stories are well worth a read – find them here.

Looking back at what I wrote today I think it’s also fair to say a lot of what I wrote about how being involved with Soha helps me – especially my last paragraph – can also be applied to my CAB work.  People have in the past said to me they don’t understand why I volunteer and how I could just sit at home and no one would blame me.  But I’d be a lot worse off – and possibly in need of greater medical and other support – if I did that.  Because that’s the difference volunteering makes.


>My submission to the consultation on DLA reform


I am lifelong disabled. Always have been and always will be.  Specifically I have cerebral palsy (CP) and use a wheelchair 95% of the time.  I’m able to stand and take a couple of steps, enough solely to move between bed, wheelchair, toilet, powerchair etc.  I also have clinical depression and anxiety.  This was not caused by my physical disability but is made much worse by it.  I was diagnosed with this in 2003 and have been on treatment for it almost continually since then.  I have many concerns about DLA reform.
As someone who is lifelong disabled I’ve been in receipt of DLA at the rate of Middle rate care and Higher rate mobility since DLA came into being.  There is no cure for my CP which means I’ll never improve to a state where lower levels or no DLA is needed by myself.  CP being a static condition also means that there is little chance of my condition becoming such I require higher levels of DLA.  As such I have an indefinite award.  That doesn’t mean it’s a permanent award, it just means that they recognise my circumstances are such they need not be reviewed regularly.
I am concerned the greater impact of these proposed changes hasn’t been assessed correctly.  I live in Oxfordshire and in 2007 my support from Social Services was withdrawn as I wasn’t considered to have high enough needs.  Since then the criteria have become even stricter.  My DLA has enabled me to continue living alone.  It means that I can pay for a cleaner to come once a fortnight and mop my floors, change my bed and clean the kitchen/bathroom.  The rest of the time I live in a very messy house I have no choice.  It pays for extra washing because I’m incontinent and also because sometimes my clothes catch on my wheelchair and get dirty quickly (and sometimes for extra clothes because they rip).  It pays for new batteries for my powerchair as I have no other form of out the house independent mobility but don’t qualify for one of the NHS.  For heating as I get cold easily.  Slightly more expensive foods that come in packets I can open without help and things which are low effort to prepare.  If I was to lose my DLA I would have to go back to social services and they would need to find that help for me, something which would likely cost more than the DLA I receive each week.
My family (parents and younger brother and sister) all work full time.  They’d have to find a way to help me out much more than they already do.  I’m not being melodramatic when I say they would likely end up having to do all of the support that DLA allows me to arrange for myself.  Doing that on top of full time work would be very difficult.  My mother runs her own business which would likely suffer if we found ourselves in that situation.  Surely that isn’t good for the economy? 
Then there would be the increased cost to the NHS.  My family wouldn’t want me to feel guilty or like a burden but it’s how I would feel.  I’m 29 and I’m independent, but I’m really scared I’ll lose that.  That’s making my mental health problems worse – I had a panic attack yesterday about the possibility.  If the situation becomes a reality it’s very possible my medications will need to be increased at a higher cost to the NHS.  I’d also no longer be able to afford repairs and maintenance on my powerchair so would have to go back to the NHS for reassessment there.  Parent and other family carers also have a high level of health problems due to their caring responsibilities, again another possibly increasing and likely high cost to the NHS.
Currently I live in a fully adapted flat which I rent from a housing association.  It was designed for a wheelchair user as it was built.  Without my benefits and the support they provide I could face having to give up my flat and move back with my parents.  I’ve never lived in the house they currently live in and it’s not suitable for my needs.  A disabled facilities grant or similar would be needed to adapt it, another cost which DLA helps avoid in my case and I’m sure in many others.
Emma Crees
17th February 2011