A Little Bit of Life

(I am surprised that with nearly 2000 entries on this site I’ve never used the title A Little Bit of Life before)

Two bits of not so brilliant but they could be much worse news are in my life at the moment.  I don’t think dominating my life is the right term but they are definitely big factors in everything right now.  And not easy. Life is never easy.

I will start with the slightly easier one first – my powerchair is broken.

The easiest way to explain it is to say it has a broken castor.  It’s more complicated than that because of the spider-trac but basically it’s not right and it’s manifesting in one of the castors (I’m not sure but I think they won’t need to replace the wheel to fix it).

It’s been niggling at me for at least a few weeks that it wasn’t right but when Mum looked she couldn’t see anything wrong with it and I wasn’t sure so I left it. But eventually I figured, it’s under warranty, get them out. And unfortunately it is broken. (the scary thing here is that I probably wouldn’t have called them out if I’d have had to pay a call out fee). I’ve been waiting 10 or so days for the part to come in which will hopefully be at some point next week. I’m told it’s fixable and it’s covered by the warranty. I’m also told the wheel is definitely not going to fall off and I can keep using it in the meantime (although I’ve chosen not to go to Reading today like I wanted to just in case). So it’s positive bad news. It does need to go into the workshop when they have the part though.

The second part of the news is that I went to the Drs last week to discuss my mental health and am now on Citalopram for depression and anxiety.  I was last on antidepressants very briefly two years ago at which point I came off of them much sooner than I should have. I’ve decided to commit to at least a year of meds this time.

I said to her that a lot of the time previously it’s felt like depression was the bigger issue but as much as I am depressed now my anxiety feels much more prevalent. That’s why she gave me Citalopram as opposed to the Sertraline I’ve had most recently.

Citalopram was actually the first ever antidepressant I took in 2003 when I was diagnosed originally but I had to come off of it after a couple of weeks due to nausea. It had been getting better but my then GP said to try a new drug (I went onto Lofepramine for 18 months and then had several years on and off of Fluoxetine before trying Sertraline). My current GP has put me on a 50% dose for a few weeks and I’m only just a week in but I’ve had one terrible day for nausea and a day or two of feeling off. So it’s more positive than I hoped.

I won’t go into the ins and outs of how everything has been and all that.  What I will say is that it suddenly feels so much harder to talk about mental health than it has done in previous years.  A huge part of that is that a couple of people I’ve talked to about it have been really negative about it and my choosing to go on meds.  And in one case gave me some unasked for advice that was potentially very dangerous (thankfully as this is not my first go with this I knew they were full of shit).  I might blog more about that at some point soon ish as I’m hoping to get back to writing regularly but I think that’s all I’ve got to say for today.

Safe Space

A couple of weeks ago, a new collaborative blog – Safe Space – was launched.

For the past year or so I’ve been unconvinced by the concept of “safe space” on the internet – a space where people can be free to share/be who and what they are completely without fear of abuse, hate, ridicule, triggers or trolling.  It seems like too big a goal both with how massive the internet and it’s trolling problems have become and the fact that for some people what is acceptable and OK can be what’s triggering, abusive or upsetting for others. Online (and in person) safe spaces are a worthwhile goal and one that is needed but the implementation seems problematic to me (especially when some communities like the disability one can’t even agree on what’s the correct language to use)

But I completely agree with the idea of Safe Space, the blog and I’m pleased that I’m going to be part of the team.

Jess, who founded the site wrote:

Here at Safe Space we understand that it’s hard as f**k being a girl. Periods, sexism and trying to put on eyeliner can be all in a days work.

Safe Space is a place where a group of women bring you posts about trying to hold their shit together. Talking honestly about mental health, feminism, sexuality and other important life stuff.

No judgment, no hate, because it’s already tough enough being a girl.

I’m going to be posting there every other Friday.  I had a fair amount of self doubt about doing so but the other writers are a  brilliant, friendly and supportive bunch who have been very encouraging and supporting. And I’m really enjoying the posts that they have shared.

The first week the site launched we each shared – What Makes Me, Me. That was a tough subject to write about as it needed more than a bio. But I think most of us found that.

Mine turned out to be a little different than planned. I had it written and then on my way home the night before I realised I needed to make a small tweak. Then when I logged online I saw an old school friend had died and ended up making more changes than I had planned.

What Makes Me, Me – Emma

My second post went live on the site yesterday morning. I spent most of the day out doing errands then having lunch with a friend in Oxford etc.  I came home to my twitter notifications full of really positive and encouraging feedback.

That post was about self worth and is called Because I’m Worth 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.

 

File this under “you couldn’t make it up.”

Last Wednesday I got the news that I’ve been awarded ESA for two years. I’ve been put straight into the support group. It’s definitely the right decision and now I’ve had a chance to think about things and calm down I’m relieved its sorted and ok with it. But it’s not a comfortable place and if I’m completely honest I felt like I must be much more disabled than I realised.

I wrote more about that, the ESA process and how it relates to me over on Bea Magazine

And then yesterday I got a letter telling me about my DLA entitlement for this year. And all about how DLA is being replaced by PIP. I’ll be called for reassessment for that at some point.

So I just get to the point where I can stop worrying about ESA. And now they want me to worry about my DLA?! Fantastic*

I think you file that under “couldn’t make this shit up.”

*I’m not worrying about DLA because I have an indefinite award and the reassessment process for that category doesn’t even start until 2015 (meaning my ESA will come up for reassessment first most likely) but still….

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

Inspiration Porn

Tonight is the yearly Children in Need appeal here in the UK. BBC One is taken over by a telethon for about seven hours. The idea is to raise money to help disadvantaged children. So you see video clips of children from other countries walking miles for water, young carers helping their mum or dad and disabled children doing things too. And it’s a given that those children will either look sad or have their story told using emotive language such as “suffers from…” Or “whilst other children are playing little Johnny must…”

Interspersed with those clips are famous people doing silly stuff, frequent updates on how much has been raised and brief mentions of members of the public doing sponsored silences. Locally a lot of schools have had PJ days to raise money. Those can sometimes be funny and a child I was a big fan of Children in Need.

Now? I hate it.

This is what’s known in disability circles as “inspiration porn”

Inspiration porn is something which is designed to highlight the differences disability brings and invoke pity. In some cases this pity is to raise money for charity, in others it’s to encourage people and sometimes it’s designed to make them think. It’s a bit like the ultimate embodiment of the phrase “there’s always someone worse off than you”. I am disabled and therefore, automatically, my life is terrible, I am an object of pity and you have it much better than I do.

The phrase that will be heard a lot on telethons is “can you donate to make a difference to a child like little Johnny” invariably after they’ve just told you how terrible his life is. The inference being that if you can’t you obviously don’t care about him.

It’s the picture doing the rounds on Facebook with the “the only disability in life is a bad attitude.” Attitude is huge. But I can’t put on my Bolshie face, wheel up to the local shop that doesn’t have wheelchair access and stare the step down until it magically turns into a ramp and lets me in. And as much as I do my damnedest not to let my CP stop me that doesn’t make me amazing and I’m sure as hell not inspirational. The idea behind that I believe is that it makes nondisabled people think “if she can do that with all she goes through why am I moaning?” And such like.

Or it’s the advert at the train station which shows a little boy in a wheelchair with the phrase “he wishes he could leave this behind too.” And the details of how to donate to one of the disability charities. Because clearly he’s trapped by his chair. The idea as with all of these is to make you pity him. Only when I saw that poster I was sat in my wheelchair. On the train as it pulled out of the station. Fail.

Disability does make me different to other people. Wearing glasses makes to me different to other disabled people. The fact I like to dye my hair, live alone and am a big NCIS fan makes me different again from other glasses wearing disabled people. It’s a fact of life and a characteristic of me as any other for anyone else in the world.

I knew, growing up, that at least one of the organisations I was involved with had received money from Children in Need (although I don’t think it was ever featured). But I never realised that I was one of those kids. One of the ones who were shown “leaving the confines of their wheelchair behind for an hour once a week whilst they ride a horse.”

I’m glad I didn’t realise. It took me a long time to become the vaguely confident outgoing person I am now. It would have taken longer if I’d grown up with the knowledge that my life meant I was an object of pity who needed charity lives a terrible life and who is held up to others as a reason why they’re lucky. Because obviously the fact I survived being deprived of oxygen at birth at a time when the medical world wasn’t as developed as it is now means I’m terribly unlucky.

More than your charity I want your support. And for me that comes from being treated with respect. From people recognising who I am and my individuality, not making assumptions and letting me be me. That’s going to make more of a difference to more of those “children in need” then all the money donated in it’s entire 30+ year history.

If you want to help people donate direct to organisations and bypass those events that thrive on making people feel bad.

See the girl, see the truth, see the life. Accept me and those like me. I’m here living me life. Like you I’ve only got one shot at it and I don’t have a choice but to do what I do. I’m here to enjoy myself, not to inspire you or be pitied. Open your eyes and say no to inspiration porn.

Time and Change

“Time, which changes people, does not alter the image we have retained of them.” ~ Marcel Proust.

I was looking for quotes and I came across this.  It’s very apt particularly as I seem in be in a period of ongoing change in my life at the moment.

I think some of the changes may have the potential to be very good for me once they’re finished with.  But not all of them were my choice or are under my control.  And a couple of them are pretty scary.  I had a pretty big panicked cry over one the other day. Not fun.

I know that once this is sorted out I’ll be OK.  In some shape or form.  But that might not be one I’d like or have chosen.  And that’s pretty huge.  I’ll be OK.  That’s what matters.  I’ll be fine.

The journey will probably suck but in the end all will be well.

I was thinking though that sometimes I can’t understand who I am any more.  I don’t see the girl I used to be under who I seem to be right now.  I don’t see me.  Emma is lost, perhaps.

Then I read this quote and I realised that I know who I am right now, what I’ve done, where I’ve been, what I want from life etc.  But my mental view of who I am, the girl I picture when I think of myself and how things used to be?  That needs to catch up a little after all the changes I’ve had.

I’ll be playing catch up for a long time perhaps.  And maybe I never will see where I am in the moment when I picture who I am and set expectations for myself.  But I suspect that’s normal and the same for everyone else CP or no.   Life isn’t static, after all.

But CP sure as hell complicates things.

>Perspective and a refreshing carer experience

>Quite a lot of the other wheelchair users who live locally to me I know, at least to say hello to if nothing more. I keep seeing this guy around in a chair who I don’t know but his chair catches my eye as it’s covered in stickers and its red and it has an unusual control (or at least I’ve not seen it before).

Today we were both on the train to Reading so I got a chance to chat to him and his carer. Mostly me and his carer doing the talking, you know what it’s like when two women with a common subject (disability/carers) get together.
B, his carer, really impressed me with her insight into the carer role as my experience has been a lot of carers don’t see the bigger picture of it. One of the comments that was really refreshing was about how carers can end up taking away a level of independence from their clients because of the tendency to go “I’ll do it, it’s quicker” and also to just take over. The other side of that, of course, is that people who have carers can sometimes find it easy to go “the carer’s here they can do that.” I’ve not met many carers who are good at stepping back and waiting like that (of course whether she actually is good at that I don’t know, but…)
I was also impressed that she didn’t tell me all the personal details of the guy she was with (she introduced herself and him and basically other than following up things he said – innocuous things – said nothing about him) because I’ve had so many carers who have gone “you wouldn’t believe the person I was just with…. and at least one time I had a carer who stood there and slagged off how much she hated her next client to which I went “you shouldn’t tell me that it’s meant to be confidential” and when she went “but you don’t know who I’m talking about.” I was able to go “oh your next client isn’t [her next client’s full name] then? because it was a friend of mine.
B was asking me about if I live alone and do I work and was I travelling by myself and she kept saying “Wow!” which actually was quite interesting for me as I tend sometimes to think I’m not doing so great with the CP and doing stuff. But she kept saying “you don’t let the wheelchair stop you then” which made me realise how much that’s true – I’ve always known it’s true but when I’m surrounded by able-bodied people doing so much more and also a few friends with disabilities whose limits are different to mine it’s easy for those sort of home truths to get lost in the wash so to speak.
That’s twice lately people have shown that they view my life in a different way to I do – a more positive way – and helped me to get a new perspective on things. I do find it very interesting getting these kind of wake up calls.

>Dealing

>Earlier in the week my landline phone went and it was a wrong number of a sort. I was sure it was actually a guy I know (he asked for “Stan” but then gave my exact phone number as the one he was after) and so I said “is that so and so, it’s Emma.” and it was and we chatted a little.

I asked how he was and he said “oh struggling, but not as much as you do.”
Hmm.
I didn’t say anything to him about it for various reasons but dude, I think I’m insulted!
My sister and I did have a bit of a giggle about that conversation when I told her though.
Then last night as K and I were walking back from creative writing I told her. She comment that she’s never seen me struggle but she has seen me deal. We’ve been friends about a year now so it’s a fair comment.
I had to ask her to explain what she meant. She used getting stuck in the pub car park as her example because I just dealt with the situation and got on with things rather than finding it difficult.
It was a short but interesting conversation (we reached the point where we part company both about thirty seconds from our houses and were chatting on the street corner, not the best idea!). And she’s definitely right when she says I just deal with things. Because I do.
The hardest thing however (and I think she recognises this) is that sometimes, dealing and even the very fact of having to deal is really hard. Because it’s something I’ve always had to do and always will have to. And it just gets tiring.
A lot of the time I think now I don’t actually realise that I’m dealing as such I’m just doing what I do and getting on with it. As I said to K last night someone has to deal with all the issues and stresses disability brings to me life and it has to be me because there is no one else.
Compared to a lot of the PWD (people with disabilities) I knew growing up (and some of the ones I’m friends with now) I’m very lucky. Because my parents love me and support me but they also believed in tough love as I was growing up. I didn’t get treated particularly differently from my younger brother and sister and I was taught to do things for myself, get on with it, deal with it and most of all live the life I want. Having had that experience all my life has led to me still having a learning curve as an adult and self advocate but I wasn’t starting from scratch like so many PWD I know had to do when they entered the “big bad world” of adulthood.
So… contrary to what the first person thinks I don’t (usually) struggle… I just deal… and hope the day comes when I don’t have to do it quite so much.

>”adverse medical conditions”

>Outside the supermarket earlier there was a guy collecting money for a charity providing days out for kids. I forget the name which I’m annoyed about because I had intended to e-mail them about their ableist language on the board they had up.

The conditions of the children they help include, in this order:
Cancer, Leukaemia, Cerebral Palsy, The deaf and blind, terminal illnesses and other adverse medical conditions.
This is their wording, not mine.
So first I was a bit like “cancer, leukaemia, CP??!”
I don’t know why but it just struck me as a strange list. Two serious life threatening illnesses, a touch of CP, two other disabilities then oh look better fit something more serious in to finish off, terminal. Could be taken as the disabilities being as bad as the rest. Not that any of the conditions are “bad” per se just in terms of seriousness.
And their wording really, really sucks. The Deaf and blind? Uh, no thanks.
I really wish that if charities and organisations want to improve lives for PWD or illnesses or other challenges they considered their language and they way the portray people in that. Because days out are nice, and Make a Wish trips can provide wonderful memories and a break from the medical. Wheelchairs and equipment are very useful as well as often life changing.
But phrasing things in a different way also has the potential to shape the world and change lives. Refer to these kids or adults or whatever as “Emma has CP” rather than “CP sufferer Emma” or “People who are deaf and blind” rather than “the deaf and blind.”
I totally get that the charities play on pity to raise their money. And maybe they feel that using more inclusive language would prevent them making the difference they do now due to a drop in donations. But changing their language and the spin they put on things has the potential to change the world in another way.
It would help end negative stereotypes, stop reinforcing them in the public’s consciousness and it would also do a lot of people in these situations a hell of a lot of good to stop hearing how terrible people consider their lives to be and how they feel sorry for them etc etc. It would never happen but it would be such a great boost of self esteem.
Oh and finally, adverse medical conditions? I never considered CP to be “adverse” before. Hard at times, yeah. But so is life. And CP to me isn’t generally a big deal. I didn’t really like seeing CP on that list, made me feel strange. Sort of :-S
Obviously I do realise that comes down to the whole never having known any different thing however.