Oh, the irony

I was referred for an OT assessment back in April. I actually saw the OT just over two weeks ago.

One of the great many questions I was asked (the form had approx 17 pages) was about social involvement. I told him about volunteering for Citizens Advice. He asked if I liked it and we somehow got onto the topic of benefits advice. He mentioned that another service user he had been to see had shown him the medical report from their work capability assessment for ESA.

Being that for almost two years now I’ve been doing a lot of supporting clients through either the Mandatory Reconsideration or appeal processes for disability benefits I knew where that story was going. The medical report bore no resemblance to the service user’s actual medical condition/abilities.

The OT was shocked by that. I wasn’t. I told him how I often see things like “Emma can sit for an hour” or “Emma can concentrate for an hour” in reports and when you ask the claimant tells you they weren’t asked. Digging deeper often finds they were asked something innocuous like “did you watch TV last night?” and the assessor has assumed that “yes, I watched bake off.” Means they sat and concentrated for an hour. Never mind that they may have lost track of what was happening part way through and may not have sat to watch it.

The OT said he would tell the other service user that he should think about coming to Citizens Advice for some help. I hope he did, and they do. I’ll never know.

I got a copy of the assessment form in the post today. It contained some inaccurate information. One of the bits is marked as not applicable but I wasn’t asked if it applied to me (and it does).

Rather like the other service user’s work capability assessment.

Random Bullet Points of Life

For the little things in life worth recording but possibly not worth a full entry

  • I usually tell people that if an entry appears on my blog before about 9:30 it’s because I wrote it in advance and scheduled it.  But it’s 08:42 and I’m actually writing this live so to say.  I’m waiting for carer, it’s been put back to just after 9 today.
  • Lately I have not been reading.  I did just start an audiobook which I like (Where Love Lies by Julie Cohen which I got from the e-library). And I must finish my library ebook this morning as the time on it runs out just after lunch.  It’s good I just had no motivation to read for a few weeks so abandoned it with less than 100 pages to go (that’s Three Things About Elsie by Joanna Cannon)
  • I’ve been working on crochet squares for Woolly Hugs and sent a pile of 10 12 inch squares off to them last week – I’d been working on them on and off since January.  At the moment I keep starting new things and abandoning them.
  • I can’t help feeling I’ve shared the above point before but that might have been on facebook
  • My next craft maybe some decopatch though – my carers keep commenting on my decopatch “Love Books” on my book cases so I’ve told several about it.  One came in a couple of days ago and said she’d had a go and is clearly now hooked. And it’s got me wanting to do some too!
  • Writing is going well.  I’m doing Camp NaNoWriMo with an hours goal (and I definitely blogged about that before) but am really beginning to wish I’d stuck with my word count goal as it feels more achieveable. Next time!
  • Isn’t the weather lovely?
  • I’m going to see my favourite musical next week!
  • The Citizens Advice office I volunteer for is taking part in #CABLive over on twitter for the first time this week. I set it up (for us to take part) and I’m enjoying see it run.

An Unexpected Revelation

At CAB today we did some training on how to support clients who are appealing disability benefit decisions. What to do, what type of information to put in the various letters (for mandatory reconsideration) or forms (for appeal).

And the subject of getting dressed came up.

So we covered  the need to check how long it takes, do they avoid certain items of clothing or look for certain fastenings because that’s the only type they can put on (for example I can dress myself but I mostly wear trousers I can pull on and don’t wear socks as I can’t get them on and my shoes sometimes fall off as I struggle with them).

Then someone raises the point of needing to sit down to get dressed.  Someone else said “yes, because that’s not the normal way to get dressed.”

The conversation moved on pretty quickly but I was sitting there thinking “What? Sitting down to get dressed isn’t normal?”

I did kind of know that – I’ve seen many friends and family members get dressed standing up but at the same time it surprised me to hear something that’s my normal described as not the normal way of doing so.  It probably shouldn’t have done but it felt like a bit of a revelation. I think I’d been kind of assuming that sitting to get dressed like I do was normal and it was the ablebodied people with their insistance on standing to get dressed that were the unusual ones.

I mean, really, why do that when you could just sit down somewhere comfy?! It makes sense to me. But if society wants to see their weird hopping from foot to foot and trying to balance as the correct way to get dressed I’m not going to argue with them.

I would so hate to be normal after all.

An Evening in the Pub

I wasn’t going to blog about this but one of the others on my journalism course suggested I should.

Earlier this week a bunch of us from CAB went to a pub in a nearby town to eat.  It was our post Christmas, Christmas social (we always have it in January).  It’s not a town or pub I know. But based on what I’d heard of the access I didn’t have alarm bells ringing

Then we got to the pub and as my colleague drove past the main entrance and into the car park I could see it had a step. I didn’t know about that step.

Across the dark car park we go. I’m hoping I’m not about to wheel into a pothole I can’t see and tip myself out – the downside of the manual is it tips so much easier than the powerchair. And we try to go along to the back entrance. But the path in the beergarden is narrower than my chair and so my wheels are sinking in the mud where it’s been so wet. I can’t wheel myself through it and nor can anyone else.

Round to the front to look at that door. It’s not happening. Two inch step and a then a tight right angle turn to go through another, narrower door that no one thinks my chair will fit through even if we could get me up the step.

I’m beginning to think I’ll be ringing my Dad to come get me. I don’t know that I’m going to get into this pub.  But then a staff member appears and she suggests getting me in through the kitchen.  It wasn’t level and I needed help to bump up and over the lip and negotiate the tight turns in this old, listed building.

At last, surprisingly, I am in the pub. I greet my colleagues and get a drink.

Then I go to wash my hands because they’re muddy from the attempts at crossing the garden. I come back out of the disabled toilet with clean hands but the knowledge that I won’t be buying the “next round” I’d said I would. Because for some reason there’s only one grab rail in there. By the sink. So I’m making my drink last and putting up with my thirst and hoping I don’t need a wee.

I did enjoy the food and it was really nice to see everyone and have a proper chance to chat. I saw several people I’d not seen for ages (possibly not since the last social in the summer in one case) and met someone new who volunteers on different days to me. It was good.

Then it came time to leave. As they were getting me out, a different staff member was helping. He made some comments, I forget what, and I said “I was told you were more accessible than this.” And he told me the problem was that I was using the wrong door. Wheelchairs always use the front door. “But that’s got a two inch step.” says I. He didn’t reply to that but as he moved out of my way and I wheeled towards the car I heard him tell one of the others that they might look into getting a ramp.

The person who organised our meal emailed me a couple of days later to say she’d sent the pub a message to thank them for our lovely evening. She copied part of the managers reply (who might have been the person who helped my out, I’m not sure) and he apologised for the difficulty in getting “the wheelchair” in and said they are going to look into what they can do to make the front door better accessible within the limits of how old the building is and it’s listed status.

That’s brilliant. I’m pleased that they saw my difficulties and say they are going to try to resolve them.  I’m even more pleased that it didn’t take me writing a letter or making a complaint afterwards to do that.  I won’t go back but it’s nice to think that maybe, just maybe, another wheelchair user who comes after me won’t have so much faff and struggle.

But I really would love for someone to explain to me just how people forget to mention (or don’t even notice) the bloody great step to go in.  Because sadly places do that all the time. And I just don’t get it.

 

V is for…

V is for Volunteering

(how is it possible we’ve reached V already?)

I do a lot of volunteering and I have done for over ten years.  It’s a great way to fill my time and allows me to make a positive contribution to society whilst working around the limitations of my disability and my inability to work in a paid role.

OK that sounds pompous and technical but basically volunteering works for me because I can do it on my schedule.  I can ensure that I pretty much never volunteer two days running and that I only do a few hours at a time.  If I can’t manage to go in on a day I’m supposed to it’s not a problem and if I can manage to go but only to do part of what I’m supposed to they work around it with no pressure. Plus in my CAB  role there are one or two things that advisers do that I don’t to make things easier for me.  Volunteering has a ton of flexibility that paid work doesn’t.

And it makes me feel good about myself (most of the time).

Mostly I volunteer for my local Citizens Advice Bureau.  I’m there twice a week most weeks doing roughly 5 hours in total over the two sessions.  I’ve been there for ten years and I’ve done a variety of things in my time there.

One session a week I volunteer in client facing roles which is either as a gateway assessor – doing a ten minute triage type interview with people who drop into the bureau to work out if we’re the right people to help and what sort of help they need.  I quite enjoy doing those but I suck at sticking to the 10 minutes.  That said pretty much everyone does. Alternatively if I’m seeing clients that might be as as adviser doing a full advice interview.  That’ll be with someone whose been through the gateway process and needs further help from us.

My other session I work as Research and Campaigning coordinator which can be anything from gathering evidence to writing letters to our MP.

I’m also an involved resident with my local housing association who I rent from.  Up until recently I chaired their disabled residents group but someone else has just taken over.  I do things with them on a much more ad hoc basis and that can be things like helping with the annual report, contribution to the tenants news that gets sent out and attending focus groups. I’ve made a couple of friends though that and had coffee with one yesterday.,

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.

 

The Longest Six Months Ever

My first ever shift as a CAB volunteer was Wednesday 1st September 2004.

I was looking for paid work and wanted to do some volunteering to keep me busy whilst Iooked and so I had something work wise to put on my CV.  I was going to do admin and I’d said I thought I’d do six months.  I wasn’t going to train as an adviser because you really needed to commit 12 – 18 months for that.

But then very quickly I was going to train to be an adviser.  And then social policy came into my role there. Followed by gateway assessor.  I can’t remember which way round those last two happened but I think it was that way round.  It’s strange I can’t remember when they were both a big deal when they happened.  And I love doing gateway now but I was so nervous of it when it came in.

Then I’d been there a year and that seemed strange.  A few more years passed and I’m suddenly one of the ones who’ve been volunteering the longest.  And now, today, it’s been ten years.  It’s a bit like “holy crap how did that happen, surely I’m still 22 and I only graduated a few months ago?!”

I thought it would feel like a big deal and that when I was in the bureau this afternoon doing social policy I’d be thinking about it a lot.  Because sometimes I feel I’ve not achieved a lot with my life since I graduated.  I’ve done a lot, I know I have, but not necessarily the big life events people focus on.  I’m OK with that – but it can be something I struggle with on milestones.

But actually I forgot until a few minutes ago. And really it’s just another day.

Whenever I talk to someone (often a new volunteer) about how I got involved in CAB and how long I’ve been there I often joke about it being the longest “six months” ever.

And it has but it’s been worth it, I’ve had laughs, made friends and enjoyed it.  It’s stressful and you can’t always help people.  I’ve probably advised hundreds of clients and I can’t remember most of them but I hope I’ve made a difference.

My “six months” of volunteering will probably continue a few more years.  But, if I’m completely honest I do hope I’m not sat here on 1st September 2024 writing about how I’ve been there 20 years.

It’ll be OK if I am though.

Thank You

I’m quite well known for not noticing people waving to me when I’m out and about. Or not knowing who people are when they know me.

Part of that has to do with the fact I meet so many people through things like CAB. I’m usually the only person they deal with but depending on if I’m doing appointments of gateway (10 minute triage like interviews) I might see up to 4 people in one session.

The big thing in training for CAB is confidentiality. One of the points made about it is that due to that you shouldn’t acknowledge clients outside the bureau. That’s easier than it sounds because more than likely I don’t remember them or I think “hmm I know them from somewhere…” There are obviously the odd memorable person. Regulars and such like. But the number of people I’ve met and introduced myself to who’ve then gone “I know you helped me at CAB” and I’ve not known them is huge.

One day recently I was doing some jobs in town popping from place to place.

And in one of them someone saw me and said “oh! Good Morning.” As they walked past.

I replied “Morning” and continued what I was doing.

30 seconds later they reappeared in front of me to say

“You really helped me a long time ago but I don’t think I thanked you properly.”

All of a sudden the stuff in front of me didn’t have my attention any more. I’d been only half listening expecting the usual “bizarre and probably inappropriate comment to a wheelchair user” I so often get. Not that.

I said they were welcome and asked “at CAB?” They said yes and that it’d been “years and years ago”

I’m wracking my brain but I’m getting no where on who this might be so I asked how long “years and years ago” was

It turns out years and years ago was so long ago they had to think for a minute before they could answer. And so long ago I really can’t have been advising for long when I saw them.

We talked for a few more minutes. I had to admit I didn’t remember them. They said how much of a difference I’d made, how often I’d seen them and how grateful they were. They thanked me again and left.

I thanked them and left as well.

Because that made my day.

I can’t write any more about this. Because of confidentiality. But also because even with several days of thinking later I can’t remember them.

Recognition

Not long after I wrote yesterday’s post it occurred to me that I’ve actually been doing a brilliant task lately of taking better care of myself. And that not only is the guilt I felt yesterday unnecessary, it’s also unwarranted.

I’ve always struggled with recognising the good things I’m doing. For some reason it’s much easier for me to remember and focus on the negative than the positive. I suspect that’s true for most people but it feels like something I need to work on going forward. Make it a goal for the rest of the year perhaps?

At CAB I often point out to clients things that from my perspective as an adviser they’re doing well. Usually little things they’ve probably dismissed as nothing but which I frequently see clients who’ve not managed that. The usual example used in training advisers is the person who comes in with letters they’ve ignored because opening them is too much. Sometimes they’ll sit in reception and open it while they wait. But at other times the adviser does it for them, Or the person who needs to do something on a deadline and doesn’t seek help until the day before.

When I was going through the IB to ESA transfer I got the first letter and basically lost it. Totally freaked out. I was in the bureau that afternoon, still struggling. They did the same thing with me “Emma, you opened the letter and dealt with it. Think about some of our regulars in a similar position. Several of them wouldn’t have even opened it”

That recognition of the little things I’m doing right is something I need to start applying to myself. Along with looking at the bigger picture of how it all fits together to form a greater whole. I’m not sure how but I’m thinking about it.

Because the fact of the matter is: I’ve been working on three taking care of myself goals for the past week or so and achieving them.

It’s easy to forget about because they seem so small but it’s actually pretty huge

You Know You Have CP When…

…you get congratulated on still having the wheels on your powerchair. Twice. On separate days.

…you go to say goodbye to the same person who congratulated you because they’re leaving the bureau and moving on to a new job. And amongst the “wishing you well” comments they make they include that they “hope your wheels don’t fall off”

…you wear out all four if the castors on your powerchair in 14 months. Hence all the wheel falling off comments because it was a genuine possibility while I was waiting for the replacements.

…your Dad books an accessible taxi to take you, him and your mum to your brother’s wedding. When another staff member at the taxi company has queries he assumed you booked it and calls you saying “hi you booked a taxi” leading to a very confused conversation where he’s adamant you did and you swear you didn’t. Of course that wasn’t helped by my Dad booking a month to the day before the wedding…

…you try on the dress you bought for your brothers wedding for a second time. This time you do it in your wheelchair. The dress that’s an inch or so too long for you? Hangs down into the mechanism of your chair and needs taking up by 6 inches.

…a complete stranger walks past you and tells you to slow down.

…you use a hoist once a week at sailability. But you’re the hoist expert.

…you get a drop down rail fitted in the bathroom. The guy fitting it looks confused at part of it and then tells you it’s a handle to help you pull it down. You decide against telling him it is, in fact, a loo roll holder.

…you get them back out to check the rail because you think it’s not secure. They make adjustments and then demonstrate how they can’t move it before assuring you its secure. You then use it to transfer and immediately move it in a way it shouldn’t go.

…you’re manuevering round a very tight space and check with the person holding the door for you that you’re nowhere near their feet. They declare you’re not. And then you immediately run their foot over.