Words - The #Disability #BlogCarnival

This is the (day late) January Disability Blog Carnival. Our theme today is words and we have several posts to share.

I originally chose the theme because I am focusing on the word courage this year. I've been meaning to write a longer post about the reasons behind that decision but most of my blog time lately has been taken up by words of a different sort - my 100 days of writing project.

I've also been wondering about the meaning of wheelchair user. I've been thinking that maybe there needs to be a different term. But I've yet to come up with one!

Ok that's enough about me. Here's some other people's contributions.

First up we have Becky who is someone I think should blog more often. Her post is Words words words - they matter.. She writes:

Words, though, aren’t without their connotations and their price, in terms of my mood, depending on the situation.

The Goldfish is the next participant with mad bad dangerous to say as she wrote in the email she sent me:

It's about the words we use around mental illness and asks how we can
separate these from the words we use around outlandish behaviour which
may have nothing to do with mental health.

As someone who has some mental health problems and uses the username CrazyWriteNow in some places it really made me think.

Loathing words is by Dave Hingsburger of Rolling Around In My Head. He addresses several common disability words and basically calls bullshit on them.

Shiloh has done something a little bit different in her post about hope. She's taken a common end of year meme and used it and her word of the year - hope - to look forward to the year ahead. I found it quite an intriguing idea but I think I'll stick to my end of year tradition.

In what I think is the first vlog I've included in my editions of the disability blog carnival we have this very heartfelt video Acceptance by Elaine, who tweets as @raggydoll79. It made me want to gather her up and give her a big hug.

Girl With The Cane sent me a link to an older post of hers. Politically Correct. It's about the power of words and it's brilliant.

As she writes:

If you really believe that words are just words, put your money where your mouth is. No agenda of politically correct language…the respect of finding out someone’s personal preference…and going by it.

Gimp Tude is a new blog to me. Having just gone back to read awesome I think it might become a regular read.


This year I’m going to be awesome. Able-bodies hold your pity please. Hold your stories of brave and inspiring. I’m just going to be more awesome than I’ve ever been. So deal with it.


Gimp, by the way, is the one disability positive word that makes me uncomfortable. I think it's because it's a very American word so I don't hear it very often and also because I first heard it about 9 years ago before I began to know about reclaiming words etc.

That's all folks! Dave Hingsburger is up next.

I Should Be #100daysofwriting #disability #mentalhealth #amwriting

Day 14 of 100!

A bit of bad news and very high pain levels led to an accidental 3 hour nap and my not being my usual self.

I Should Be

I should be

I should be writing
I should be sleeping
I should be doing the washing.
I should be doing my physio.
I should be sending emails
Exercising, knitting or reading a book.

There are many things
I should be doing
But I'm not

I'm sat here
Back hurts
Spasming muscles
And spasticity
In my legs
Like you
Wouldn't believe

Bad news hits
My mood is
Sad.

But meds mean
I'm not in bits
Without them
I'd really be that
Bad.

My body hurts
One way
My mind
Another

Both conspire
To stop me
In my tracks

Suddenly both
Motivation
And
Ability
I lack

So yes
I should be bettering myself
I should be going to the bank
I should be visiting friends
I should be productive
I should be hundreds of things
And right now I'm not.

My conditions
Are permanent
Today is bad

Tomorrow may
Be good
Not should
Just could

No guarantees
And not choice for me

The list is
Ignored
It'll wait till
Then

I focus on
One
I should be
...
LIVING

Unlucky For Some. #100daysofwriting

The Disability Blog Carnival is running approximately a day late due to unforeseen circumstances. We apologise for the delay to this service.

Anyway. On to the writing.

Day 13 of my 100 days of writing. And I've been thinking about the idea of unlucky 13. Which morphed into this somewhat unrelated piece which needs a much better title

Unlucky For Some

"I don't know how you do it you know?"

"you've lost me."

"I mean I really admire you doing everything you do. I couldn't do it."

"this is a turn up for the books I didn't think there was anything YOU couldn't do. Little Miss Capable, that's you."

"No... I could do it."

"OK I really don't know what you're talking about"

"it... It's just got to be so hard. I mean I know you'll deny it but that's your way. And to think if not for one moment of bad luck you'd have it so much easier. It's just not fair, is it?

"hmm well, I can't answer that question being I don't know what the question is."

"you don't?"

"no..."

"I'm talking about your problem..."

"what problem? The only problem I've got now is this conversation. We're going round in circles and I'm really confused"

"you know. Being able-bodied. I couldn't cope with being able-bodied. I mean, having to walk everywhere rather then using a wheelchair. I don't know how you do it, I really don't."

The Meaning of Wheelchair User #wheelchair #language #disability #disability #CP

I've been thinking for a while that there needs to be a different term to wheelchair user.

I spend 99% of my waking hours in my wheelchair. I can stand to transfer but I need to get my chair right by the bed or the loo or whatever. The thing I'm transferring to needs to be the right height and also stable. In the bathroom I have to have grab rails and with them I can take a couple of steps. If I stay in a hotel I have to a room with a wheel in / level access shower.

That's what I mean when I say "I'm a wheelchair user"

Other people who use wheelchairs have a lot more mobility than me. Need to get up a couple of steps? It's a struggle but it's doable. Or they can use a normal toilet if they can get their chair outside the door. Perhaps the offer of a ground floor hotel room is all they're looking for.

And of course there's a whole spectrum of wheelchair users beyond and in between my own level and that of my hypothetical wheelie.

The thing is though it feels like lately I keep being told "we have wheelchair access" or "we're used to dealing with wheelchair users". And then whether I turn up there, or we're just chatting and it comes up or I ask pointed questions the truth comes out.

They might have wheelchair access but not for a wheelie who can't manage in the ladies? A wheelie like me. They don't have the access I need. But it's ok. Because they have "wheelchair access."

This NHS support group thing I might be joining, the staff say they have a lot of wheelchair users. They're used to dealing with them. It felt to me like they were making a big deal of that. Then when I went to meet one of the staff members. And the majority of their wheelchair users? Struggle with distance but can still stand and walk a bit - we're talking that level of mobility.

The staff are used to that sort of wheelchair user. I've already been told that in what I consider a big part of the programme, they can't accommodate my level of ability. They've made a plan to do something else but I can try the regular thing if I want.

Then there's the accessible hotel room where I get grab rails - and a bath. Despite having told them I had to have a shower. No good wash for me then. Interestingly that hotel had 13 "accessible" rooms - and only 1 had an adapted shower.

I understand that we're a huge spectrum of ability and need and we're all different. I value that and I'm not suggesting that any one type of wheelchair user is better than the other.

But I am getting very frustrated and a little bit sick of hearing hype about wheelchair access and then finding that it's not suitable for someone as disabled as me.

So I've been thinking that there needs to be different terms to wheelchair user. One that a wheelie with some out of chair mobility can use to ask for the facilities/access they need. A slightly different one that I can use that people understand means I'm an "all wheelchair, all the time" sort of wheelie and that's the level of access I need.

After a couple of weeks of thought however I've not come up with any new terms.

A Few Haiku #poetry #100daysofwriting #haiku #amwriting

One of the things I've been hoping that will come out of this 100 days of writing project is that I'll be stretched as a writer. And that's definitely happening, the daily commitment is tough to maintain. But I'm enjoying it and I think the discipline of it is helping me a lot. I want to be stretched as a writer in other ways though.

One of the things I've always struggled with is set forms of poetry. And particularly haiku. I get confused by the syllables and knowing how many a word has. I really want to get the hang of it because I think it's something that could help me with all my writing (in terms of pacing and rhythm) not just poetry.

So for day 12 of 100 I've attempted a few haiku.

Haiku rhythm confuses
And syllables elude me
Words meaning three lines

Sunlight on water
Birds flying in bluest sky
Perfect spring picnic

Cold crisp crack and crunch
Bleak midwinter has arrived
Sharp snow surrounds all

Red orange golden
Every leaf on the ground
Autumn's presence descends