Quick and Dirty #Disability Theory

I posted on Facebook earlier this afternoon that I’d given someone a spur of the moment elevator pitch length explanation of the social and medical models of disability and they’d understood it without my needing to clarify any further. This was, and is, a win. Especially because I really believe they actually understood it and didn’t just say so to shut me up. Then one of my friends posted that she doesn’t speak disability.

And apparently I have blog entries on here dating back to 2006 but have never defined the models. Despite having both a social and a medical model category on here.

So here goes. This will be quick and dirty but hopefully makes sense.

The medical model of disability states that impairment and disability are solely caused by medical conditions and are not influenced by anything elses. This, I believe, is much more commonly used in America. According to the medical model I am a person with a disability and am disabled by my cerebral palsy as a result of which I use a wheelchair.

The social model of disability states that it is the barriers that society puts into place and the attitudes of those around me which disable me. It acknowledges the fact that yes, I have cerebral palsy and use a wheelchair but that if I’m in a fully accessible and supportive environment I can and do access things the same as everyone else. This model would say that I am a disabled person and my disability is caused by the failings of society to provide equal and fair access that meets my needs.

There are other models of disability such as the charity model (sometimes known as the tragedy model) which depicts disabled people as a victim of circumstances beyond their control for which they need to be pitied.

Further confusion can be and is caused by the language of disability. It’s also sometimes the cause of debate or even argument between disabled people. Persons with disabilities (often shortened to PWD) is a medical model term as I said above but it’s also used by some people who prefer it as it’s person first language and shows they are more than their condition. Others (myself included) prefer to use disabled people regardless of which model they subscribe to because it’s identity first language and shows what they identify as.

And then there’s the argument about whether or not the a in disabled and disability etc should be capitalised (i.e. disAbled, disAbility) to bring the focus onto our abilities and what we can so rather than what we can’t. Personally I hate that.

Finally there’s the people who say you shouldn’t use the term able bodied because we’re all able but in different ways. The term nondisabled is the most commonly used and it’s the one I like but it’s difficult for people to understand. And to be honest no other minority describes the people outside of it by what they’re not so I don’t know if it will ever fully replace able bodied. Another term that is sometimes used is temporarily able-bodied or TAB (some people use currently able bodied, I don’t mostly because I heard of TAB first and the acronym for currently able bodied would be the same as where I volunteer and so confusing). This refers to the fact that statistically speaking most people will become disabled as some point in their lives whether due to illness, accident or simply aging.

My own journey with disability theory and the language of disability is ongoing and ever evolving. If you go right back to the beginning of this blog you’ll see the term PWD used a lot but it’s a term I no longer use. I’ve used TAB a lot in the past too but I’m not sure I’ve done so for years. Neither term feels relevant to who I am and where I am now.

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.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

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.

Tools, Tenants and Tang, TPAS 2012

The general opinion yesterday was that I “look really tired”. First I met up with a friend and they said it, then the other person we were with came along and said it a couple of times yesterday. And someone at the event we were at asked me if I’d enjoyed it saying I looked tired. I was chatting to one of the journey care staff at Oxford who knows me and she went “oh Emma you look really tired.” Finally when I spoke to mum when I got home she asked if I was tired.

I’m still pretty tired today but less so. Yesterday everyone got simply told “yeah I am.” Today I am thinking of jokey responses.

I spent the last three days (Monday to Wednesday) in Birmingham for the TPAS Conference 2012. TPAS for those not in the know (which included me until recently) works with social housing providers to involve tenants in the running and decision making of their housing provider.

It’s not something I would have thought to go to but I was asked to go. When I was told all my expenses would be covered, two nights in a hotel, workshops, disco both nights and a swanky awards do one night I was like let me think… Yes!

There were I think between 400 and 500 people there, a mixture of involved tenants and staff. I went with another tenant and a member of staff. I knew them before but enjoyed getting to know them better. We laughed a lot the whole time including about some really silly things. It was good fun and non stop!

The hotel was very nice… Pretty swish with thick carpets and some very blingy lights. If you think Pat Butcher’s earrings you get the idea of the sort of thing I mean. They gave me a 12 page accessibility document when I checked in but I feel relatively sure that no OT was harmed in the making of the accessible room I had. It worked but although everything I needed was there and useable there were errors like if you sat on the shower seat you couldn’t shut the screens and the bathroom flooded. Never mind, I’m sure housekeeping enjoyed cleaning my bathroom for a second time that day after my early evening shower.

I realised how much I don’t know but I also learned a lot including:

* I really hate wheeling on carpet

* The TPAS Angels (help staff) are brilliant at helping me at the breakfast buffet. I would ask for something and they’d stick loads on, usually more than I asked for because “it’s only little…” I missed them this morning!

* More than $1 Million is spent in FarmVille everyday. I went to a writing workshop which showed a video on 24 hours in social media It was really good and I think I can do a lot with what came out of it but that FarmVille stat freaks me out. (the title of this blog comes from this workshop where small groups of us came up with a headline to describe the conference)

* I am very lucky in the help and support I get from my housing provider. I knew that already but hearing storied from tenants from all over the country brought that home. Particularly the stories from other disabled tenants, some of which infuriated me.

* I knew that there are a lot of changes coming in social housing but I hadn’t realised just how big and in some cases scary they are.

* That I would rather do almost anything else than hear a particular speaker again. He was so boring and unable to answer the questions people were actually asking him but instead the one he wanted to answer.

* But that I would really love to hear another of the speakers again because she was brilliant. Plus when she got everyone standing for somethng she had thought about it and was like “if you can’t stand put your hands in the air if you can’t stand.” which is good because so many times can’t stand means not included.

* Just how important resident involvement is. I do it because it gives me opportunities to do things I enjoy or am passionate about but it’s about so much more than that.

* And that I really, really hate wheeling my manual chair on carpet.

Loser Like Me

This entry may come across as cagy. It is deliberately so.

I’ve been dealing with a completely ridiculous access fail for the past 12 weeks. Basically it’s done a complete number on my self confidence and depression, serving as a weekly reminder every Thursday that I’m different and that I’m not worthy of what everyone else has. Twelve weeks of being told they’d made a decision to do X about including me and then suddenly two weeks later we’ll do Y or oh no Z instead.

It is dealt with. I’m not exactly enamoured with the reasonable adjustment type solution they’ve come with. Full the same as everyone else access wasn’t an impossible dream here and is obviously what I would have preferred. They’re aware that they’ve upset me and for the most part what it’s done to me. The fact that during one of our conversations I was accused of using my disability as an excuse being why I say “for the most part”

I’m not saying I no longer care. I’m just saying that this 12 week course is now up and I’m trying to dust myself off and move on.

Anyway I have been listening to a lot of my feel good songs to cheer me up. On Thursday I suddenly realised that Glee’s Loser Like Me should have been on that list. And after listening to it I thought “crip parody!”

Not sure it’s good but I enjoyed writing it…

You may think that I’m a zero
But hey everyone you ever see
Probably end up like me
You may say that I’m a freak show (I don’t care)
But hey give it a little time
Bet life’s gonna change your mind

All of the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me

Push me up against your rancour
And hey, all I do is shake it off
Go and talk to your boss
I’m not thinking bout you haters
Cos hey I could be a cripple star
I’ll see you if you get this far

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

Hey you over there
Keep the “L” up, up in the air
Hey you over there
Keep the “L” up ‘cos I don’t care
You can throw your distance
And you can throw your steps
Like a rocket just watch me go
Yeah
L O S E R
I can only be who I are

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

♥ Emma

>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

>Snotty Letter #disability #100daysofwriting

>It’s time
For a
Snotty Letter

It’s time
To show
Why I’ve
Got my
Rep

People say
I’ve a
BAD ATTITUDE

Or that
They never
Met a
More ungrateful
Little Madam

The fact
Is I’ve
Got rights

Unthinking changes
Allegedly to
Help staff
Ruined my
Day out

So it’s
Snotty Letter
Time again

The staff
Were great
They hate
The change
As well

I had
To laugh
At that

I said
This thing
Is shit
They said
We know!!!

Impossible problems
No solution
No excuses

I’ll be
Polite yet
Very firm
Insisted on
Advertised access

Bite my
Tongue and
Think first

It was
Very disappointing
Needed better
Planning and
User consultation

Snotty annoyed
And not
Snotty screaming

What the
Fuck were
You thinking?
Fucking ridiculous
And unnecessary

My friends
Helped rescue
My day
Park picnics
Cafe drinks

But that
Won’t make
Snotty Letter

If asking
For my
Rights means
People don’t
Like me

That’s fine
I’ve never
Been afraid

Secretly I
Hate it
If I
Weren’t disabled
They’d listen

Crips stereotypes
Cause offence
To all

I ask
To be
Treated the
Same as
Other people

I’m good
At advocacy
Being heard

But really
I just
Want to
Visit Swindon
Not Oxford

I hope
Someday disability
Won’t be
A reason
To think

It’s time
For a snotty
Letter

But sadly
And stressfully
That day
Is not
Today

>What Access Is – And Isn’t #spartacusreport #disability #access

>A few situation I’ve encountered when it comes to “wheelchair access” and what I’d like to have said in return.

If you’ve got toilets on the ground floor but not a disabled toilet then don’t tell me you’ve got wheelchair access.

If you had wheelchair access you’d have a disabled loo. A toilet which has no grab rails and which you can get a wheelchair in but not if you want to shut the door is not a disabled loo. So kindly take a moment to stop a think and stop claiming you’ve got one.

Don’t tell me you’re really used to dealing with wheelchair users and then tell me you can’t do your usual programme with me because of my inability to stand unsupported. If you dealt with as many wheelies as you said my level of disability wouldn’t be a barrier and I’d be doing what everyone else does.

Your suggestion that I can travel via London Paddington and save time by taking the tube from there is helpful. As is your telling me that there’s partial access in the tube station and my journey is doable. Unfortunately the reason you couldn’t convince me is that there’s no wheelchair accessible way into the tube station there. Listening to me and letting me get a word in would have saved us both the argument.

I asked if you had accommodation that’s adapted. “We have ground floor rooms” isn’t an answer. Because adapted means a shower seat, grab rails and being able to get my chair right in the room.

I’m really grateful you’ve made an arrangement to adapt things for me. But the reason I said I couldn’t do that was because I can’t. So adding on “unless you want to try the unadapted way that is.” is pointless. I’m 30. I’ve lived with my disability my whole life. I know my abilities and limits. I don’t need to be told to try something.

Having one or two steps and a movable ramp makes me think you’ve thought things through. When I arrive and it turns out one or two is actually seven dotted around the place. And that the ramp is moveable but you won’t let my carers move it? I’m going to be pissed off. But not as pissed off as you’ll be when I fall out of my chair on one of the steps and cause a bit of a panic.

>The Fight Never Ends – #BADD2011

>Today is Blogging Against Disablism Day (BADD).  BADD started in 2006 I believe making this the 6th BADD.  When it was first set up I was a campaigner and an advocate but not as much as I am now.  I was really excited by the prospect of this day when we could all come together and work towards a common goal – the fight against disablism.

6 years later? Not so much.

Days like BADD and other events like One Month Before Heartbreak are wonderful at raising awareness.  And they take a lot of work to organise so I have big respect for The Goldfish from that point of view – I would rerun OMBH but I’d really rather not!  The downside of such events however is the fact that once they’re over the attention can fade.  No one can fight all the time and no one can pay attention to fights that continue endlessly.  Personally I am suffering somewhat from “campaign” burnout at the moment.  In a way I’d really rather ignore BADD this year but I know that I’d feel guilty if I did that.  But I’d like to ask everyone reading this to remember that whilst BADD is a once a year thing, disablism isn’t and so the fight against it never ends.  If you take nothing else away from this entry, please remember that.

Disablism happens every single day.  If not to me then to someone out there.  I can’t remember the last day I visited twitter and didn’t see at least one mention of it.  Maybe not by name but implied in the description of what happened, the hurt feelings, the abuse or the pain.

There are a lot of things which happen to me which I don’t consider disablism because they are my disability normal.  Some of them I deliberately choose not to blog about because in the grand scheme of things it’s not a big deal and it’s easier to move on.  But then I find that if I do tell friends about them, just mention it in passing sort of thing they can be surprised by what my life is really like and think things are terrible when to me they aren’t.  That’s absolutely ridiculous isn’t it?  The struggles of life with a disability, of disablism blatant or accidental are so normal to me that unless it’s huge I don’t always register it.  Truth is however I can’t go along thinking and focussing on the negatives in life and how terrible things are because I’m already on antidepressants and I’d need a whole lot more if I did that.  I can choose to wallow or I can choose to live life and fight despite my disability.  And I choose acceptance, a fight and lots of living.

Want to hear something else that’s totally ridiculous now I think of it?  I recently had a conversation with someone whose partner (an acquaintance of mine) had started using a wheelchair a couple of weeks before.  I think it was unexpected and by the sounds of things it’s not been very easy.  All of which I’m sure we can agree is totally understandable.  But as we were talking (this was just a brief chat) a couple of things they’d been finding difficult came up in conversation.  They were surprised by what those were.  I was surprised by their surprise.

That’s something that always happens when I talk to new or short term wheelies.  They talk about how outraged and shocked they are that they had to be lifted up a step into the cinema or the restaurant they’d been looking forward to going to didn’t have access when they got there.  And I sit there and think “welcome to my world” and their shock and surprise surprises me.  Because things like that are normal to me and if I’d not been somewhere before I’d check into it.  It’s rare that I can just head out the house and go somewhere new without some advance research and there’s always this little part of me that wonders at the fact that others don’t have to do that.

Disablism, problems with access and other disability related issues and obstacles no longer surprise me.  That’s gotten to be true to such an extent that when I went to the hairdressers (in a new premises) on Wednesday and they knew where their moveable ramp was, knew how to use it, it worked for me and there was no fuss whatsoever I was surprised.  (and so was my (nondisabled) Mum when I told her – she commented they must have been practising as they knew I was coming).  But the fact that’s the case? It’s totally ridiculous.  The fact that I talk to new wheelies about issues and the fire they still have surprises me?  Even more so.

But that’s what life is like for me.  It’s what life has been like for me.  Disablism, disability etc have all been a part of my life.  They will all continue to be a part of life for me as long as I live.  I hope however that as the years go by it will be much much less.  But must of all I have a hope for all the new wheelies and other disabled people out there.  Those who today have had accidents, or strokes.  The small children with CP just learning about their wheelchairs.  I hope that they never find disablism becomes “normal” to them.  I hope they never become as bitter as I am at times about it.  Because that, to me, is why we have events like BADD.  It’s why I am, and always will be, a fighter.  However reluctantly at times.