Rotation Curation for #Disability #rocur

I’ve been curating the @OxfordIsYours twitter account.  It’s a RoCur (Rotation Curation) account for Oxford and the person who runs it said living in Oxfordshire counts.

Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject.  Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.

I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy.  That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues.  The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.

Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.

I’d really like to have a go at curating People of UK for a week.  But what I’d really really like is for their to be a disability rocur.

And as far as I can tell there isn’t one.

I’m thinking about setting one up.  I know of one other person who is interested in taking part. But I think we need more than that to set it up.

So I need help to do that.  I need to know if people are interested in that.  And if so

I need people to be curators.

I need people to signal boost this message

And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.

I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled.  I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.

Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.

Let me know in comments if you are interested or tweet me @FunkyFairy22

 

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.

 

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

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.

Rekindled

I’m reading a good book at the moment.  I hope to finish it tonight and I’ll review it for my blog in the next few days most likely.  When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
Albert Schweitzer

I’ve had a tough year I think it’s fair to say.  And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.

I love quotes as anyone who has read my blog for a while will probably realise.  This resonnated with me a lot.

I’ve spent time this year feeling as though I was worthless.  As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence.  It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.

Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.

My family.  My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.

The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).

The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh.  Those who lurk in the background.  The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.

Those who do things I would never expect.  On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair.  I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.

My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past  “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.

10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.

I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough.  My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.

Thank you.

>I am now A Writer In A Wheelchair AND In Print!

>This is a really, really exciting update!  Brought to you by a really, really, really excited cripple!!

You may remember that a few weeks ago I briefly mentioned that I’d had an magazine article accepted for publication.
Well, that article was accepted by Disability Now (for their Up Close and Personal section) and I got my copy in the post this morning.  It looks amazing.  And I especially loved seeing my article and my name on the contents page.  It’s also available online but I must admit the website version doesn’t look as great to me. Looking at the tiny author photo and seeing myself is GREAT!
Please read it and let me know what you think!

>And now for something completely different…

>Just thought that this was worth sharing… Will be back later, probably.

Accept that some days you’re the pigeon,
and some days you’re the statue.

Always keep your words soft and sweet,
just in case you have to eat them.

Always read stuff that will make you look
good if you die in the middle of it.

Drive carefully. It’s not only cars that
can be recalled by their maker.

Eat a live toad in the morning and nothing
worse will happen to you for the rest of the day.

If you can’t be kind, at least have the
decency to be vague.

If you lend someone £20, and never see
that person again, it was probably worth it.

It may be that your sole purpose in life
is simply to serve as a warning to others.

Never buy a car you can’t push.

Never put both feet in your mouth at the
same time, because then you don’t
have a leg to stand on.

Nobody cares if you can’t dance well.
Just get up and dance.

The early worm gets eaten by the bird,
so sleep late.

When every thing’s coming your way,
you’re in the wrong lane.

Birthdays are good for you; the more
you have, the longer you live.

Ever notice that the people who are late
are often much jollier than the people
who have to wait for them?

If ignorance is bliss, why aren’t
more people happy?

You may be only one person in the world,
but you may also be the world to one person.

Some mistakes are too much fun
to only make once.

Don’t cry because it’s over;
smile because it happened.

We could learn a lot from crayons:
some are sharp, some are pretty, some
are dull, some have weird names, and
all are different colors but they all
have to learn to live in the same box.

A truly happy person is one who can
enjoy the scenery on a detour.

Happiness comes through doors you
didn’t even know you left open.

Have an awesome day, and know that
someone has thought about you today….

>Canvas Bags – Tim Minchin

>

Take your canvas bags
When you go
To the supermarket
Why use plastic bags when you know
You know the world can’t take it

Take your canvas bags
When you go
To the supermarket market market
Don’t you use those plastic ones
No, no, no
Don’t you know that you’ll feel better for it

Take your canvas bags
Take your canvas bags
Take your canvas bags
To the supermarket

Just think about the world
And how the world would be fantastic
If we got rid of all the plastic
We just need to get enthusiastic
Start a competition gymnastic
Or a bag making comp at your school
Fuck it, make it interscholastic
Canvas is for everyone
Whether you be rebellious and iconoclastic
Or conservative or ecclesiastic
I don’t care if you’re loud and bombastic
Or quiet or virtually monastic
Sober or on the floor spastic
Yoga master or completely inelastic
I’m not trying to be ironic or sarcastic
Just do something drastic
To rid the world of plastic

Take your canvas bags
Take your canvas bags
Take your canvas bags
To the supermarket
Black out…!

Tim Minchin always makes me laugh. Especially this song which is so relevant to where we are now in our world. I thought of it today when the girl was packing my shopping at Sainsbury’s this evening. And I can think of one or two other people who read this who would like the song so… enjoy.

I have about 1K words done for NaNo. Must do some more later.

>Let battle commence

>Social Services are going to be stopping my support from them as I no longer meet the criteria. This all happened at a supposed “review” at the end of April.

And I got a letter from my GP and wrote to my social worker with a copy of this stating that 1) I wanted the decision looked at again 2) I felt the report didn’t show the full picture, particularly when it came to mental health issues – which my GP supported in her letter – and 3) stated in closing the letter that I looked forward to discussing this matter with her, in person, at a reassessment. I stuck closely to those three points but did provide some examples.

The reply came today. And it came from another social worker as mine has now retired. So I’ve never met this new one. She’s basically written what could be considered a reply but that’s too strong a term. It is, in fact, a letter designed to get me to shut up and accept the decision, whilst being thinly disguised as a reply. I’d think it quite clever if it wasn’t for the fact that as a tactic it sickens me and I consider it morally wrong.

She reiterates several things that my now ex-social worker stated in her report. She thanks me for “raising my concerns.” and tells me she is now dealing with “this matter”. All to be expected.

But then she tells me that I shouldn’t base the security of my mental health on services which might not always be available to me. And a load of other “your depression is getting better” false platitudes. The review took this into account I am told.

Then we get to the worst part I need to understand that as a busy and successful individual changes will come in my life, not all will be positive or welcome, and I must learn to deal with these changes. Not to mention the part where it is basically implied that depression is no big deal and that I just need to keep busy.

If I really want care I can use my DLA, it’s for the additional costs of being disabled.

Hmm… 1 hours support is about £14, DLA middle rate care is £40/week. I have 4hours of support. You do the maths. That doesn’t cover the costs of additional washing or heating or taxis because I can’t drive which apart from my paying a small contribution to the cost of my support was what I thought it was for!

We end with the comment my my ex-SW considered this a very positive move for me and the new one (henceforth to be known as that bitch) hopes her letter will have helped me to understand and accept it more.

So basically, I’m still not going to have support. The points in my letter were ignored and she is encouraging something of a “blame, shame and guilt culture” about depression. She probably also sat there writing it thinking she was wasting her time and sighing.

The other huge point is that she states in the letter I agreed that last year was the last one I would have support for – I WASN’T TOLD THAT! That interests me in that it’s at least the second time that an official agency has tried to stop a complaint from me based on their insisting on having told me something they hadn’t. Previously they knew damn well I wasn’t told and that if I had been told I would have no grounds for complaint – same as now. I proved it last time and I intend to do my damndest to prove that now.

Needless to say, she did waste her time. Because this doesn’t end here.

I’m off on holiday at the weekend. And then… get ready Bitch because battle commences at the beginning of July.

>My Grown Up Christmas List

>This is the song that my new layout was inspired by. The version I have is sung by Amy Grant although I understand it’s also been done by other artists including Michael Buble and Kelly Clarkson.

I really like the melody of it and the meaning behind the lyrics. To me, they paint a very vivid picture and it is one that shows the truth in the world today. This song was originally released by Amy Grant in 1992 and in some ways we have moved on a lot from that time. In others, we haven’t and so the song is still hauntingly relevant.

The other thing about this song is that, to me, Christmas has become other commercialised and we have lost it’s true meaning. That is something that annoys me a lot. The lyrics of this song acknowledge that fact ~ Heaven surely knows / Packages and bows / can never heal a hurting human soul ~ and comes back to include the stuff that matters; the stuff Christmas is supposed to be about.

So basically, I just love this song.

Do you remember me?
I sat upon you’re knee
I wrote to you with childhood fantasies

Well, I’m all grown up now
And still need help somehow
I’m not a child but my heart still can dream

So here’s my life-long wish
My grown-up Christmas list
Not for myself, but for a world in need

No more lives torn apart
That wars would never start
and time would heal the heart

And everyone would have a friend
And right would always win
And love would never end, oh
This is my grown-up Christmas List

As children we believed
The grandest sight to see
Was something lovely, wrapped beneath the tree
Well, Heaven surely knows
That packages and bows
Can never heal a hurting human soul

No more lives torn apart
That wars would never start
And time would heal the heart

And everyone would have a friend
And right would always win
And love would never end, oh
This is my grown-up Christmas List

What is this illusion called
The innocence of youth
Maybe only in our blind belief
Can we ever find the truth

No more lives torn apart
That wars would never start
And time would heal the heart

And everyone would have a friend
And right would always win
And love would never end, oh
This is my grown-up Christmas List

This is my only life-long wish
This is my grown-up Christmas List

~ Amy Grant