I am in the middle of writing a longer blog post about the language of disability. I saw a brilliant blog about the language of adoption and I've also been poking one of my friends gently about disability inclusion in her writing on a semi regular basis. The two things conspired to make me want to share some more thoughts on disability language.
The following poem is for my 100 days of writing project and was meant to be at the end of the disability language entry. Which isn't finished and looks to be a long one. So this gets it's own separate entry.
The words I use
To describe myself
Are right for me
And I have the right to choose
If I want to say
I'm this
Or that
Today
You can ask why
I use a term
I'll explain happily
Rather then let it pass by
But please don't try
To tell me I'm not
Something I clearly am
If you don't like it tell me why
I'm always happy to discuss
Disability language matters
I find other points of view interesting
And disagreeing won't make me cuss
Language and disability are cause for much debate.
Not everyone agrees with everyone else
But in many was our diversity makes us stronger
Which for our community is really great
Of who I am I am proud
So words like crip
And cripple and spastic
Are totally fantastic to say out loud
Monday, 9 April 2012
Saturday, 7 April 2012
'twas the night before #Easter
This is in honour of Easter and the fact I wanted to do something more challenging than I have been. I tweeted earlier that I was writing something which would either be fucking genius or fucking ridiculous. This is that piece and I would love feedback on it.
With apologies to the writer of the original
Twas the night before Easter
And all through the house
All creatures were stirring
(but thankfully there wasn't a mouse)
The eggs were placed
On the work top with care
In hopes the time to eat them
Soon would be there
This cripple was not
Tucked in her bed
Visions of chocolate danc'd in her head
A long nap or
A DVD with goodies in her lap instead
Dreaming interrupted by such a clatter
She had to go see what was the matter
Wheeled to the window in a flash
Didn't open the sash
(too cold)
The streetlights with their bright orange glow
Gave a weird look to those below
When what to her unsurprised eyes should appear?
Five drunks
(a regular occurrence this year)
She knew in a moment they'd be gone real quick
Hopefully before someone was sick
More rapid than eagles a straggler he came
Danced and pranced and shouted Easter egg names
"hey mars!" "oh Cadbury" "maltesers they'll do"
"now creme egg and then one with a mug too"
Too many to choose he didn't know what to do
To Sainsburys, to Tesco they'd visit them all!
As even Easter eggs in hurricanes can't fly
an obstacle he couldn't get by
Down to the shops went the straggler (and his friends too)
In search of Easter eggs
Old favourites - and new
And then in a twinkling she heard one youth
Prancing and pawing (most uncouth)
As she drew in her head and was turning around
Back across the room went the crip in one bound
She was dressed all in black from her head to her foot
Her clothes all tarnish'd with food that she cook
A bundle of eggs on her wheelchair back
She looked like a child as she delved in the pack
Her eyes — how they twinkled! Her dimples: how merry,
Her cheeks were like roses, her nose like a cherry;
Her droll little mouth was drawn up like a bow,
The skin on her chin was covered in white chocolate you know
The last bite of Easter egg held tight in her teeth
The foil it encircled her chair like a wreath
She had a broad face, and a little round belly
That shook when she laugh'd, like a bowl full of jelly:
She was chubby and plump, a right jolly old elf,
You laugh'd when you saw her in spite of yourself
A wink of her eye and a twist of her head
For watchers to know they had nothing to dread
She spoke not a word but went straight to work
Put out Easter treats then turn'd with a jerk
And laying her finger aside of her nose
And giving a nod, out the room she goes
She went to her bed giving a whistle
To sleep she fell fast like a missile
But you heard her exclaim, as she turned out the light—
Happy Easter to all, and to all a good night.
♥ Emma
With apologies to the writer of the original
Twas the night before Easter
And all through the house
All creatures were stirring
(but thankfully there wasn't a mouse)
The eggs were placed
On the work top with care
In hopes the time to eat them
Soon would be there
This cripple was not
Tucked in her bed
Visions of chocolate danc'd in her head
A long nap or
A DVD with goodies in her lap instead
Dreaming interrupted by such a clatter
She had to go see what was the matter
Wheeled to the window in a flash
Didn't open the sash
(too cold)
The streetlights with their bright orange glow
Gave a weird look to those below
When what to her unsurprised eyes should appear?
Five drunks
(a regular occurrence this year)
She knew in a moment they'd be gone real quick
Hopefully before someone was sick
More rapid than eagles a straggler he came
Danced and pranced and shouted Easter egg names
"hey mars!" "oh Cadbury" "maltesers they'll do"
"now creme egg and then one with a mug too"
Too many to choose he didn't know what to do
To Sainsburys, to Tesco they'd visit them all!
As even Easter eggs in hurricanes can't fly
an obstacle he couldn't get by
Down to the shops went the straggler (and his friends too)
In search of Easter eggs
Old favourites - and new
And then in a twinkling she heard one youth
Prancing and pawing (most uncouth)
As she drew in her head and was turning around
Back across the room went the crip in one bound
She was dressed all in black from her head to her foot
Her clothes all tarnish'd with food that she cook
A bundle of eggs on her wheelchair back
She looked like a child as she delved in the pack
Her eyes — how they twinkled! Her dimples: how merry,
Her cheeks were like roses, her nose like a cherry;
Her droll little mouth was drawn up like a bow,
The skin on her chin was covered in white chocolate you know
The last bite of Easter egg held tight in her teeth
The foil it encircled her chair like a wreath
She had a broad face, and a little round belly
That shook when she laugh'd, like a bowl full of jelly:
She was chubby and plump, a right jolly old elf,
You laugh'd when you saw her in spite of yourself
A wink of her eye and a twist of her head
For watchers to know they had nothing to dread
She spoke not a word but went straight to work
Put out Easter treats then turn'd with a jerk
And laying her finger aside of her nose
And giving a nod, out the room she goes
She went to her bed giving a whistle
To sleep she fell fast like a missile
But you heard her exclaim, as she turned out the light—
Happy Easter to all, and to all a good night.
♥ Emma
Reaching Crisis Point #disability
NOTE: I'm ok but I wanted to write about this because I thought it was important. I kept talking myself out of doing so which is why its taken me two weeks to get round to it. I found it pretty hard to write and it's quite long and I think raw.
Two weeks ago (give or take) I stuck some jacket potatoes on to cook. I went off and did a few bits including putting some washing in the dryer. I'd been in my powerchair for most of the day and after doing that (my powerchair lives in front of the dryer) I went to transfer back into my manual.
As I parked the Quickie I idly noticed that my potatoes had just under an hour left to cook. I wasn't bothered and was planning to finish reading my book whilst waiting. I stood up and took the few steps I needed to turn and sit in my manual. Whilst standing facing my manual I put my arms on the seat for support.
It was at that point that I realised that having moved it since getting out of it that morning I'd not put the brakes on properly. The chair went flying back. I scrabbled a bit but unsurprisingly hit the floor. Hard. And I scrapped my right arm pretty badly as I did so. Caught it on the chair, I think on a footplate.
I lay there face down on the floor and considered the fact that I was bloody stupid. And then I noticed where something I'd misplaced was. I'd been meaning to ask someone to look and see if it had gone under a unit but now I wouldn't need to because I could see for myself that's where it was. I could reach it too. and did so. I decided that I'd be able to get a pretty decent "you know you've got CP when..." entry for my blog out of this.
All the while I was staying on the floor because I was having clonus and also I needed a minute to regroup. eventually I knew I'd regrouped as far as I could whilst on the floor and my clonus had stopped. So I started manoeuvring myself into a position where I could try and get on my knees and up into my chair. I can almost always eventually get myself up after a fall.
I lost track of the number of attempts I made. I just couldn't do it.
If I got myself onto my knees I couldn't lift my chest off the ground. And if I got myself sat up I then couldn't get onto my knees. I think twice I got myself into exactly the right position to get up but still couldn't. My legs felt incredibly tight. A touch of extension I think.
I got myself sat in the doorway leaning against the doorframe with my legs flat out in front of me. That felt like a really good stretch and I made the decision to stay there for five minutes or so and rest. Five minutes up I tried and failed again. Noticing that there were now less than 20 minutes until my potatoes would be done I realised it was time to admit defeat.
Ever since my old phone went missing in January I've had the new one on a lanyard around my neck. Only the lanyard was broken. And I had no pockets in my clothes. Luckily I knew where it was and was able to pull myself on my tummy (by rocking from side to side) to grab it from my bag. I called my mum and said those words I so hate
"I've fallen and I can't get up"
She replied
"I'll send your father.". Her stock reply for situations such as these. Falls, vomit, changing my bed and cutting my toe nails all fall in that situation.
I propped myself up in the door frame until what felt like ages later I heard my dads key in the lock. It can't have taken more than five minutes or so but it felt longer and I will admit just before he arrived I was beginning to be a bit "where the hell is he."
Then he arrived and I apologised profusely and repeatedly for the problem. I also requested he do something with my dinner before trying to help me up as I didn't want it to burn. I've got my priorities you see and at that point being on the floor wasn't a big deal. He said they weren't quite done and turned the oven down, amused at my concern.
Always, unless I've fallen somewhere unsafe (like when I got tipped out of my chair on the pontoon at sailing and there wasn't safe space for me to try) if I can't get myself up I just need help of one person. Always.
I lost track of the number times he tried to help me up. We tried a few different ways, using a pillow to stop it being so high, taking the cushion out of my wheelchair for the same reason (the front of my Jay 2 has a pommel which makes it higher than the rest and being that it's a deep contour cushion it's pretty deep already.). He also insisted on trying to swing me from sitting to standing which I didn't want him too as I was worried about his back. My feet were slipping all over as well, compounding the problem. I got very tired and ridiculously breathless with the exertion. I've since been told by my mum that Dad thought I was going to have a heart attack. I find that incredibly upsetting and I cried when she told me.
Eventually he said he'd call my brother for help. Grabbing my cordless phone he wandered into my bedroom and called him. And then called my mum explaining what was Happening.
Returning to me he got me some water and then he said
"mum asked if you were ok. I said you were. Are you?"
I had to smile at that because that's my family through and through.
It took my brother at least ten minutes to get to me. He brought his fiancé with him. I once again apologised repeatedly to all and them the two of the tried to help me in my chair I think twice. Neither worked.
Geri was feeling bad that she didn't know what to do to help and I asked her to do something with my dinner (those priorities again...). After a brief regroup moment Ben suggested that trying to get me on my bed might be better. It would give us a bigger area to aim for.
He grabbed my arms and dragged me lying on my tummy through the hall and to my bed. From that point of view it was lucky I wasn't in the lounge when I fell. They managed to get me on my knees propped on the bed and it felt much more secure than when they did it with my chair. There was a brief right let's try and get you standing comment but I suggested if they could they just manhandle me onto the bed like that.
And finally nearly two hours after I fell I was lying face down on my bed. Safe.
Although squawking for someone to please move my foot quickly from where it had ended up as it was on top of one of the decorative bits at the end of the bed. ouch.
Geri brought me a drink and I rested there for several minutes. Then Dad brought my manual over and helped me into it.
We chatted for a few minutes and I sat my brother in the powerchair and used to riser to lift him up. They were very impressed and he was a little freaked our I think! Dad chucked my potatoes on a plate and with yet more apologies I sent them off with thanks leaving me to finally eat my tea and call my mum.
My arm was covered in really bad bruises for over a week. many people asked about them in a "oh my god" type way. I ached a lot for a day or two and my knees hurt for longer. Emotionally I was a bit of a mess because I knew that I had done this to myself and it was my weight that had caused it.
Things weren't helped by a ridiculous access fail the next day and by something very valuable going missing from my house a couple of days later. Ive definitely been struggling hard lately.
Mum said that in all weight loss stories you read there's a crisis point that the person reaches that made them realise they have to lose weight. This was mine.
Someday I'll fall again, it's a fact of CP life. I don't ever want to feel that helpless like that again. And I definitely don't want to scare my family that badly again.
I made a phone appointment with my GP. I told her what had happened and requested an OT assessment. As we were saying goodbye she said "are you ok other than your bruises?"
And I said "Yes I am...well, you know..."
She replies "yeah I know."
Because she knows me and knows if it has to do with CP I'd swear blind I was ok even if I was dying. Because I don't let CP stop me.
This is a hard entry for me to write. I almost didn't amt to in case people felt sorry for me. And because I thought it was sound absolutely fucking terrible and it wasn't.
Except... The truth it hurts me to admit is... it was probably the worst fall I've ever had. It scared me so much. And I've gone from "falls happen" to really worried I'll fall again.
That's not a way I want to live.
Two weeks ago (give or take) I stuck some jacket potatoes on to cook. I went off and did a few bits including putting some washing in the dryer. I'd been in my powerchair for most of the day and after doing that (my powerchair lives in front of the dryer) I went to transfer back into my manual.
As I parked the Quickie I idly noticed that my potatoes had just under an hour left to cook. I wasn't bothered and was planning to finish reading my book whilst waiting. I stood up and took the few steps I needed to turn and sit in my manual. Whilst standing facing my manual I put my arms on the seat for support.
It was at that point that I realised that having moved it since getting out of it that morning I'd not put the brakes on properly. The chair went flying back. I scrabbled a bit but unsurprisingly hit the floor. Hard. And I scrapped my right arm pretty badly as I did so. Caught it on the chair, I think on a footplate.
I lay there face down on the floor and considered the fact that I was bloody stupid. And then I noticed where something I'd misplaced was. I'd been meaning to ask someone to look and see if it had gone under a unit but now I wouldn't need to because I could see for myself that's where it was. I could reach it too. and did so. I decided that I'd be able to get a pretty decent "you know you've got CP when..." entry for my blog out of this.
All the while I was staying on the floor because I was having clonus and also I needed a minute to regroup. eventually I knew I'd regrouped as far as I could whilst on the floor and my clonus had stopped. So I started manoeuvring myself into a position where I could try and get on my knees and up into my chair. I can almost always eventually get myself up after a fall.
I lost track of the number of attempts I made. I just couldn't do it.
If I got myself onto my knees I couldn't lift my chest off the ground. And if I got myself sat up I then couldn't get onto my knees. I think twice I got myself into exactly the right position to get up but still couldn't. My legs felt incredibly tight. A touch of extension I think.
I got myself sat in the doorway leaning against the doorframe with my legs flat out in front of me. That felt like a really good stretch and I made the decision to stay there for five minutes or so and rest. Five minutes up I tried and failed again. Noticing that there were now less than 20 minutes until my potatoes would be done I realised it was time to admit defeat.
Ever since my old phone went missing in January I've had the new one on a lanyard around my neck. Only the lanyard was broken. And I had no pockets in my clothes. Luckily I knew where it was and was able to pull myself on my tummy (by rocking from side to side) to grab it from my bag. I called my mum and said those words I so hate
"I've fallen and I can't get up"
She replied
"I'll send your father.". Her stock reply for situations such as these. Falls, vomit, changing my bed and cutting my toe nails all fall in that situation.
I propped myself up in the door frame until what felt like ages later I heard my dads key in the lock. It can't have taken more than five minutes or so but it felt longer and I will admit just before he arrived I was beginning to be a bit "where the hell is he."
Then he arrived and I apologised profusely and repeatedly for the problem. I also requested he do something with my dinner before trying to help me up as I didn't want it to burn. I've got my priorities you see and at that point being on the floor wasn't a big deal. He said they weren't quite done and turned the oven down, amused at my concern.
Always, unless I've fallen somewhere unsafe (like when I got tipped out of my chair on the pontoon at sailing and there wasn't safe space for me to try) if I can't get myself up I just need help of one person. Always.
I lost track of the number times he tried to help me up. We tried a few different ways, using a pillow to stop it being so high, taking the cushion out of my wheelchair for the same reason (the front of my Jay 2 has a pommel which makes it higher than the rest and being that it's a deep contour cushion it's pretty deep already.). He also insisted on trying to swing me from sitting to standing which I didn't want him too as I was worried about his back. My feet were slipping all over as well, compounding the problem. I got very tired and ridiculously breathless with the exertion. I've since been told by my mum that Dad thought I was going to have a heart attack. I find that incredibly upsetting and I cried when she told me.
Eventually he said he'd call my brother for help. Grabbing my cordless phone he wandered into my bedroom and called him. And then called my mum explaining what was Happening.
Returning to me he got me some water and then he said
"mum asked if you were ok. I said you were. Are you?"
I had to smile at that because that's my family through and through.
It took my brother at least ten minutes to get to me. He brought his fiancé with him. I once again apologised repeatedly to all and them the two of the tried to help me in my chair I think twice. Neither worked.
Geri was feeling bad that she didn't know what to do to help and I asked her to do something with my dinner (those priorities again...). After a brief regroup moment Ben suggested that trying to get me on my bed might be better. It would give us a bigger area to aim for.
He grabbed my arms and dragged me lying on my tummy through the hall and to my bed. From that point of view it was lucky I wasn't in the lounge when I fell. They managed to get me on my knees propped on the bed and it felt much more secure than when they did it with my chair. There was a brief right let's try and get you standing comment but I suggested if they could they just manhandle me onto the bed like that.
And finally nearly two hours after I fell I was lying face down on my bed. Safe.
Although squawking for someone to please move my foot quickly from where it had ended up as it was on top of one of the decorative bits at the end of the bed. ouch.
Geri brought me a drink and I rested there for several minutes. Then Dad brought my manual over and helped me into it.
We chatted for a few minutes and I sat my brother in the powerchair and used to riser to lift him up. They were very impressed and he was a little freaked our I think! Dad chucked my potatoes on a plate and with yet more apologies I sent them off with thanks leaving me to finally eat my tea and call my mum.
My arm was covered in really bad bruises for over a week. many people asked about them in a "oh my god" type way. I ached a lot for a day or two and my knees hurt for longer. Emotionally I was a bit of a mess because I knew that I had done this to myself and it was my weight that had caused it.
Things weren't helped by a ridiculous access fail the next day and by something very valuable going missing from my house a couple of days later. Ive definitely been struggling hard lately.
Mum said that in all weight loss stories you read there's a crisis point that the person reaches that made them realise they have to lose weight. This was mine.
Someday I'll fall again, it's a fact of CP life. I don't ever want to feel that helpless like that again. And I definitely don't want to scare my family that badly again.
I made a phone appointment with my GP. I told her what had happened and requested an OT assessment. As we were saying goodbye she said "are you ok other than your bruises?"
And I said "Yes I am...well, you know..."
She replies "yeah I know."
Because she knows me and knows if it has to do with CP I'd swear blind I was ok even if I was dying. Because I don't let CP stop me.
This is a hard entry for me to write. I almost didn't amt to in case people felt sorry for me. And because I thought it was sound absolutely fucking terrible and it wasn't.
Except... The truth it hurts me to admit is... it was probably the worst fall I've ever had. It scared me so much. And I've gone from "falls happen" to really worried I'll fall again.
That's not a way I want to live.
Declaration
My mood is somewhat better today; I actually feel like I've achieved some stuff which helps.
I have a positive looking outcome to an access issue I flagged on the horizon and as that was one of the things that made things tough the other week it's a help to move things forward. My bruises from my fall are completely gone and a plan is in place to hopefully lessen the impact of future falls (so long as I can avoid falling in the next month or so) I REALLY must blog about that. The third crap thing I think will never be resolved but I've almost finished doing everything that needs doing to take it as far as I can. So I'm getting there and moving forward.
All of that crap and I haven't shed a single tear over any of it. Amazing. Take a bow, sertraline.
This is my attempt at a funny poem. I like it but I think it isn't good at the funny part.
This is a declaration
A declaration
Or perhaps
A proclamation
I'm not sure
Which
But it is my intention
To provide
This information
In a decisive way
Information
Shared across
The nation
With the intention
Of it being
A declaration
Or perhaps
A proclamation
Should be taken seriously
But now
it's time to mention
That I've lost my train
Of thought
It's gone
Never to be
Caught
So
This is my declaration
Or
My proclamation
(the difference was
lacking from
my education)
Containing
Important
Information
To be shared across
The nation
Stop listening
To me
And go on
Vacation
Or just have
Your tea.
♥ Emma
I have a positive looking outcome to an access issue I flagged on the horizon and as that was one of the things that made things tough the other week it's a help to move things forward. My bruises from my fall are completely gone and a plan is in place to hopefully lessen the impact of future falls (so long as I can avoid falling in the next month or so) I REALLY must blog about that. The third crap thing I think will never be resolved but I've almost finished doing everything that needs doing to take it as far as I can. So I'm getting there and moving forward.
All of that crap and I haven't shed a single tear over any of it. Amazing. Take a bow, sertraline.
This is my attempt at a funny poem. I like it but I think it isn't good at the funny part.
This is a declaration
A declaration
Or perhaps
A proclamation
I'm not sure
Which
But it is my intention
To provide
This information
In a decisive way
Information
Shared across
The nation
With the intention
Of it being
A declaration
Or perhaps
A proclamation
Should be taken seriously
But now
it's time to mention
That I've lost my train
Of thought
It's gone
Never to be
Caught
So
This is my declaration
Or
My proclamation
(the difference was
lacking from
my education)
Containing
Important
Information
To be shared across
The nation
Stop listening
To me
And go on
Vacation
Or just have
Your tea.
♥ Emma
Thursday, 5 April 2012
The 3 Rs #fridayreads #amreading
I've had a really lazy day doing lots of reading amongst other things. I kept thinking I'll read one more chapter then I'll do something else but that usually turned into three or four more at least.
I have so many unread books (both actual books and ebooks) that over a few days I considered all of them. I then declared a book buying ban and made a list of books. I am not buying any more books until I've read or at least attempted all of those. Although I did buy two books when I was writing the thing.
There are 35 books on the list, I've since finished two and hope to finish one or two more over Easter (a lot of them are short - I deliberately listed those as they are quick and will make a big dent in my TBR pile). I reckon at least 10 of the books have around 200 pages so providing they aren't hard going I could read one of them in a day or so. Of course I do have library books out at the moment and didn't list those...
I anticipate taking at least three months to read the list, probably longer. I doubt it will be less but who knows.
Reading
Writing
Arithmetic
The 3 Rs
They were
Called at
School
Kinda amusing
Looking back
When you think
Only one
Begins with
R
That's probably
Why
Literacy
And
Numeracy
Are what
Teachers
Say
Today
Two of
The Rs
Are my
Hobbies
I've spent
The day
Reading
And now
I'm writing
School made
Them fun
But I'm
Not sure
I'd get
So much
Enjoyment
Out of literacy
As I do
From
Reading
And
Writing
(you can do
What you
Like with
Arithmetic)
♥ Emma
I have so many unread books (both actual books and ebooks) that over a few days I considered all of them. I then declared a book buying ban and made a list of books. I am not buying any more books until I've read or at least attempted all of those. Although I did buy two books when I was writing the thing.
There are 35 books on the list, I've since finished two and hope to finish one or two more over Easter (a lot of them are short - I deliberately listed those as they are quick and will make a big dent in my TBR pile). I reckon at least 10 of the books have around 200 pages so providing they aren't hard going I could read one of them in a day or so. Of course I do have library books out at the moment and didn't list those...
I anticipate taking at least three months to read the list, probably longer. I doubt it will be less but who knows.
Reading
Writing
Arithmetic
The 3 Rs
They were
Called at
School
Kinda amusing
Looking back
When you think
Only one
Begins with
R
That's probably
Why
Literacy
And
Numeracy
Are what
Teachers
Say
Today
Two of
The Rs
Are my
Hobbies
I've spent
The day
Reading
And now
I'm writing
School made
Them fun
But I'm
Not sure
I'd get
So much
Enjoyment
Out of literacy
As I do
From
Reading
And
Writing
(you can do
What you
Like with
Arithmetic)
♥ Emma
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