Monday, January 8, 2018

When will we be equal?

OK , not all disabled people (Identity first language) , people with disabilities (people first language') like the word 'Crip'.

I accept the argument but I have 'reclaimed' it. It's mine, its me. I like me. OK.

In days gone by (and often not even 'gone by') the 'Crip' or 'Cripple' word was seen as, and used as, abusive, pejorative and nasty. But more and more disabled people are using it as a strong affirmation of who we are. A two finger, or more commonly now, a one finger 'salute' to the 'normals', who like to describe us, and give us labels like 'special needs' or lump us together as if we sort of are like identical clones with no identity becoming 'the disabled'.

I am a disabled woman, I am the 'Crip with a Whip'.  But what happens when the 'Crip' , who tries to be 'strong', feels utterly dis-empowered by 'Cripdom'? or is it really by 'cripdom' or 'abledom'.?

Well, she, or he, must analyse the 'Crip' situation and ask the questions. Why, what, who, when?

Why? I will ask and answer ...

Why do you feel 'disempowered' ?

because I can't do all I want to do
because I don't get the support to do what I want to do
because I'm not allowed a say in my life, my care, my choices, my freedom
because I'm seen differently and treated as second-class

Now analysis due.  Has any of this got to do with being disabled? er...no, not necessarily so.  I may not be able to run in a marathon, but many cannot. I may not be able to drive, but many don't.

A lot of my difficulties are not because I'm disabled (as in, have an illness/impairment) but rather because I'm being 'dis-abled' by society, by the HSE, even by family and friends.



The world is made for 'normals' not 'crips'. That's plain discrimination. that's ableist crap. that's wrong.



What? - What am I prevented from doing?

I can't travel easily , equally like non-disabled people do
I can't go to a toilet if its not accessible
I can't go to a show, theatre or event if its not accessible
I can't eat in a restaurant I'd like to because its not accessible.

Now - analyse THAT!  Margaret you start off with 'I can't'...as if its YOUR impairment, disability, 'cripdom' that is preventing you.  That's the ableist argument.  that's the 'normals' telling you, you have the 'problem'. its your 'disability' that prevents full access. No its not.

Its time the rail authorities, restaurants, shows, event got cracking on access. this is THEIR problem.  We claim our equality. this 'crip with the whip' won't stand for it!

But we ALL must claim our equality. We must resist ableist discrimination. that argument that our illness, disability, or even age bars you from everything others - the 'normal's' access.  this is discrimination, oppression. its not equality.

Who? who is creating my inequality?

I can't get the physiotherapy I need
I can't get the specialist consultant I need
I can't get a PA self-directed package - the HSE refuse Independent living.
I can't get out of my home

Analyse Who?  Who are the people discriminating against you. Oppressing you, allowing you deteriorate, allowing you suffer?  it's not me - that's for sure. Its PEOPE. Make no mistake about it.

People who claim they have no power (HSE) or money (government ministers) or services to provide (hospitals).

PEOPLE , other PEOPLE , I can name every one, from Fninian McGrath, Minister for Disability, to the Primary care area manager Mr G or MQ, to the hospitals CEO Professor Mary Day...and to a dangerous neurologist...I can name PEOPLE who have destroyed my living independently as a sick disabled older woman.

They are all within that breed; 'the normals', all of them, with power and control over me - and they use it. They also justify it. They justify systemic oppression, discrimination. They have the power to destroy my life - and do so.

When I read this morning how 25,000 old people are illegally incarcerated in homes and nursing homes I realise the power of the Magdalene laundries, of the mental asylums , of the industrial schools is STILL deeply ingrained in Irish Services culture and psych.

My inequality is created , its not accidental. its not 'just because' I am sick/disabled, its not an 'oops - I forgot' scenario,  - no, its a desire to see us as 'lower beings', 'not worth it', 'expensive' .

Its eugenic, its Nazism, its oppression, its discrimination. Its real - its happening.

Ireland by NOT ratifying the UN convention on Human Rights for Disabled people, the only European country not to...has declared me 'subhuman'.

when?  When am I oppressed, discriminated, made to feel powerless, with no agency or control?

When 'normals' make decisions about me - without me
When medics ignore what I'm saying or describing
when the HSE hold meetings about me - without me
when I'm denied 'independent living'
when treatment is withheld, not provided
when I'm left on a freezing platform with no rail assistance
when the pub has no disabled accessible toilet
when 'normals' park in disabled persons parking bays
when taxi drivers whiz pass on seeing my wheelchair
hen I'm made homeless because the council has no accessible housing
when I'm incarcerated in a nursing home and don't need to be there
when I'm told 'don't bring your wheelchair' to a party
when the bird sanctuary I love to visit has no accessible boardwalks (this is going to be fixed next week!)
when I can't read the National Gallery's labels beside the pictures and there is not enough large print books (which don't list all the pictures anyway
when the cash machine cannot be accessed
when the train statin 'forget' I need offloading
when the disabled person's alarm is de-activated on the DART and I cannot call for assistance
when a therapist works out of an inaccessible building
when the GP has no accessible room I can access
when shops pile the isles with goods, trolleys, boxes and I must keep asking them to 'move it'.
when I don't get the wheelchair I actually need
when parents won't fold up their pushchairs and let me use the bus disabled accessible area.
when people patronisingly smile/smirk a look that simply says 'ah you poor love'
when you won't let me pay for my coffee
when the temp PA does not do her job and leaves my bedroom in chaos
When the agency who provided her - blames me and does not address that 'standard of care'

and so it goes on...and on...and on...and we disabled 'crips' sometimes 'allow' it. We do. (not all - but too many). We become weary of active challenging and prefer the quieter route of 'just let it go'. I do understand that. I seek peace and life. Activism is stressful, tiring and dispiriting.

If we are not vocal, active, campaigning, protesting, being part of the anti-oppressive movement we 'allow it'. Is there any choice?

If we are not 'crips with the whips' we allow it.

But our so called friends and families allow it too. the 'normals', actively ignore our reality (not all - but too many)

The TD's Ministers and Leaders construct it. Frame it, perpetuate it - allow it


Our institutions - hospitals, HSE primary care, Rail, buses, all 'allow it'.

We are a minority , oppressed group. We are discriminated against. its not my illness or my disability creating a less than fulfilling, living world - no - it has little to do with my impairments...and all to do with

the culturally, ingrained belief we are not 'worth it'.

we do NOT deserve equality
and you know what...

we don't have it!  








Tuesday, January 2, 2018

The Bedroom

I NEED assistance to live independently in my home. I NEED PA's - 'personal assistants'. I have a very good one Maria. not enough hours, but I like her, need her.

We get on famous and we have worked out a lot by now, about 4 years since she started.

But she took Christmas off and I was given a 'cover' PA. it did NOT work out ...at all. I didn't know her, she didn't know me. It just did NOT 'work'.

I am severely disabled. I can do nothing. I cannot make my bed, empty the commode, pick things up from the floor, hang up clothes, iron, cook, prepare meals, clean. I cannot do anything much bar use my computer and my voice!

I am accepting of that - largely - its not my 'fault', I have a neuro-muscular degenerative disease. This is my 'territory' now and I can't do much about it.

So a PA is vital. a good PA makes life liveable.

And the 'cover' PA was vital. as I had had no-one since the Friday before Christmas until yesterday. She was a nice woman, I'm not faulting her personality. I am questioning whether she really 'bothered' to do the tasks set.

PA's are trained - I think - mostly to fetec level 5 and I know my Maria has done a lot of courses to get to that qualification. Whether this 'cover' PA was qualified I don't know. but reality is, she didn't need any qualifications for the task in hand.

so lets look at that task.

The ironing was done...12 items - in an hour. she took an hour to iron 12 items... I had 2hrs of her time. I was going spare with her slowness.

I photographed the bundle done, sent it to my neighbour who does ironing for money, and asked "how long should this take? she answered 15 minutes.

 



After that, I said "can you see to the bedroom and make bed and empty commode - thanks (I always say 'thanks' after a request)"

That was surely clear?

so what did I find on entering my bedroom after she had 'seen' to it?

I took photos. Why? because I was distraught. because I couldn't do this myself...because I had had 4 hours sleep the night before due to pain. Because I'm on morphine...because I'm tired...

this is what I found after she had 'done' , finished my bedroom. She was now in the kitchen hanging up washing from the washing machine, I just went to the bedroom for something.

The bed looked 'done' but dishevelled, with a pillow at the end and a hot-water bottle there, un-emptied. I decided to see if she had actually made the bed or just merely pulled up the duvet.



 
this is what I discovered...underneath the duvet - yes, just 'pulled up' were my two comfy blankets, just as were left when I got out of bed. Simply scrunched up.  not touched, tidied, folded...just...left... My 'slippy (blue) sheet' which helps me turn over at night, was crinkled and a mess. (great for bedsores)... Pillows were askew.
 
This was NOT a made bed.
 
At the side of the bed on the floor I found the pink long sleeved T-Shirt I wore as pyjamas top, on the floor, with a dirty pair of knickers and the shoe horn which helps me put on my slippers.
 

 
Why oh why did she not pick it up - I can't. I have, as well as my neuro-muscular disease, severe spinal arthritis, and hip and knees all need replacing. I cannot, cannot bend down. I am in severe pain. I need her help.

Then I looked at the commode. emptied yes, but not covered and a loo roll was on the floor, I couldn't pick that up either...half under the bed. drawers were out. A mess.

 
On the low 'maternity' chair, a family item I inherited, were my clothes falling all over it, off it...and my sock gadget was on the floor, difficult for me to pick up. Nothing was folded or hung up...or put away... I had had no PA since the Friday before Christmas and that too was a disaster! (another blog needed) it was now 3 days since then.


Looking towards the en-suite I saw my pyjamas 'bottom' and slippers on the floor where I had to leave them on 'stepping' out of hem when dressing that morning. I get no help with dressing. Its all I can do to just strip and dress.

I was in despair. why did it 'get' to me?

why did I not say..."please can you do my bedroom PROPERLY"?  because I was exhausted, because I hate being 'bossy', because I am afraid of being called a 'complainer', because I know I will be blamed...because its simply easier to say "thank you" - not cause 'trouble' and just get her out of my house.

because I'm 'only' the 'service-user', because the agency might believe I am to blame, because I have no rights, because I'm now 'a no-body' but a disabled woman who should be grateful I got anyone at all!  Because I don't pay for this.

Anything goes.

Because I'm 'disabled', respect of me is immaterial, that my bedroom should be kept nicely, and my crap HSE bed, made comfy, is not priority. its NOT HER home.

its ONLY mine.   The disabled non-person.

I tell you about it...expose my bedroom...why?

because I AM human, because I do FEEL, because I deserve respect.

Because I feel we disabled people are made to feel as if our service providers do us a favour when, really, we should be dead. we cost money. care is not an option.

anything goes.

I tell you because it profoundly distressed me. I felt my disease had taken every part of my humanity. SHE had dishonoured me.

and I cannot say anything about it.

I am 'not allowed'.