What Access Is - And Isn't #spartacusreport #disability #access

A few situation I've encountered when it comes to "wheelchair access" and what I'd like to have said in return.

If you've got toilets on the ground floor but not a disabled toilet then don't tell me you've got wheelchair access.

If you had wheelchair access you'd have a disabled loo. A toilet which has no grab rails and which you can get a wheelchair in but not if you want to shut the door is not a disabled loo. So kindly take a moment to stop a think and stop claiming you've got one.

Don't tell me you're really used to dealing with wheelchair users and then tell me you can't do your usual programme with me because of my inability to stand unsupported. If you dealt with as many wheelies as you said my level of disability wouldn't be a barrier and I'd be doing what everyone else does.

Your suggestion that I can travel via London Paddington and save time by taking the tube from there is helpful. As is your telling me that there's partial access in the tube station and my journey is doable. Unfortunately the reason you couldn't convince me is that there's no wheelchair accessible way into the tube station there. Listening to me and letting me get a word in would have saved us both the argument.

I asked if you had accommodation that's adapted. "We have ground floor rooms" isn't an answer. Because adapted means a shower seat, grab rails and being able to get my chair right in the room.

I'm really grateful you've made an arrangement to adapt things for me. But the reason I said I couldn't do that was because I can't. So adding on "unless you want to try the unadapted way that is." is pointless. I'm 30. I've lived with my disability my whole life. I know my abilities and limits. I don't need to be told to try something.

Having one or two steps and a movable ramp makes me think you've thought things through. When I arrive and it turns out one or two is actually seven dotted around the place. And that the ramp is moveable but you won't let my carers move it? I'm going to be pissed off. But not as pissed off as you'll be when I fall out of my chair on one of the steps and cause a bit of a panic.

REPOST: Emma's Story #spartacusreport

I originally wrote this post in October 2010 when it appeared on The Broken of Britain. It's my story. I'm re sharing this here today in the hope it will help to show how important DLA is and the different it makes to me and millions of other disabled people in the UK. It's my hope that by sharing my story as I have here, in my previous entry, and in many other tweets, Facebook posts and entries here I can help people to understand a bit about disability. And that people will at least take the time to read the press release about the Spartacus Report if not the time needed to read the very well written, researched and hard hitting full report. I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked. I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants. My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy. When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access! When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything. Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go. Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been. My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us. Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

REPOST: My Submission To The Consultation on DLA Reform #spartacusreport

I originally wrote and posted this in February last year. It's the text I submitted to the consultation on DLA reform that happened then. I am reposting it today as a part of my support of The Spartacus Report.

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