Two weeks of Insufficient Support

Earlier today, I tweeted this thread:

twitter.com/madicarmoody/status/1130784542338572288

Here is the text:

I just answered the phone while on the toilet because it was from #PhysicalAndSensoryDisabilityServices. The manager, Joanna McMorrow, had told me yesterday evening that she would ring me first thing this morning. She didn’t. When I rang, she was “in a meeting”

It was a different person who just rang me back. The same person who left me a message Monday of last week to say they would review my #PA support hours in the middle of *last* week.

The original “plan” was for a review after 2 weeks at home from hospital.

That deadline passed yesterday. Again, they didn’t call me, I had to call them. Joanna was in meetings yesterday too. I eventually got to speak to her directly (the only time so far) when I found a mobile no. with her name attached on my phone.

It’s especially hard to have to chase these people up constantly because I’m not sleeping well, I’m tired all the time because I have insufficient support, and often have to sleep during the day.

I should be recovering from surgery, not fighting a slippery bureaucratic system.

This is not #IndependentLiving. This is not #dignity or #autonomy. I may not be begging on the street, but I’m made a full-time beggar by a system built on the assumption that I am lying, and that I am not the expert in my own needs.

@FinianMcGrathTD – shame on you.

(Note: Finian McGrath is currently a Junior Minister with responsibility for people with disabilities).

@HSELive – learn the difference between the #SocialModel and the #MedicalModel

(Hint: you are running a health service, all of which is based on #MedicalModel. If it was #SocialModel, I would be asking the Department of Social Protection, or the Department of Justice).

(Note: HSE is the Health Service Executive, a QuANGO established to run health services, including disability services. Its main function is to create several levels of management between the Department of Health and the citizens it is supposed to serve.)

@SimonHarrisTD – you do have an ultimate say in this. It is #StructuralAbleism and every time you pass the buck, you are letting us know that you don’t think #PeopleWithDisabilities are full citizens with full #HumanRights. Shame on you.

(Simon Harris TD is currently Minister for Health.)

This is #MyDisabledLife in your constituency. (Tagged a number of candidates for the 2019 European Parliament elections, ballots this Thursday, 23rd May.)

I tried to create a playlist of my video diaries last night, but couldn’t find a way to do so on the app. So here is a link to the channel, where I have been posting “My Diary of Insufficent Support” for the last two weeks:

https://www.youtube.com/user/coleenocasturme

Thank you for reading and watching. This fight isn’t over.

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My Diary of Insufficient Support – Day 0

Hello Internet!

I am being sent home from hospital tomorrow without any extra PA home support hours. So I’m going to document daily life recovering from surgery without sufficient support at home.

The video is over 6 minutes long, and I will return someday to type up what I said. In the meantime, if anyone feels inclined to do that for me, then please message me, you beautiful human!

Until tomorrow…

Click here to view video on YouTube

*** UPDATE ***

The stupendous Kelly managed a transcription which is the pinned comment on YouTube. I think it was automated, so here’s a slightly tidied (and punctuated!) version:

hello Internet! A

pologies for the weird

lighting but I’m in a hospital ward in Sligo University Hospital. It’s my last night here; I’m being sent home tomorrow, after having some pretty straightforward back surgery nearly two weeks ago. I could have gone home a week ago, but we were waiting to hear from the manager of Physical and Sensory Disability Services for the Northwest, to see about an application for extra Personal Assistance home support hours for the recovery period when I got back from this surgery. The surgery was originally scheduled for the beginning of February, and prior to that, with my local service provider, LAPWD, we let the manager, Joanna McMorrow, know that this surgery was going to happen; that I would need extra PA support once I came out of the hospital. Apparently, at one of the monthly planning meetings, she said, “Yes, we’ll arrange that for you”.

So, over the course of this last week, nurses here at the orthopedic unit have been trying to contact joanna McMorrow; sometimes they were ringing several times a day, they were sending emails, they were sending in paperwork – because they didn’t want to send me home without having sufficient support, so that I could survive.

Now, I’ve just had the back surgery, but that is in the context of having a long-term chronic pain condition, since 2007, that has significantly worsened over the intervening 12 years. It’s related to soft tissue problems, unstable joints and hypermobility, which hasn’t yet properly been diagnosed. and other Zebras out there will know which diagnosis I’m talking about not having. I use a wheelchair for getting out of my own house. Although with the drop of mobility that I’ve had over the last couple of years, I will be getting a lightweight manual wheelchair to use within my own house. But even that’s going to be restricted because it’s a small house. That’s arriving on may the 14th.

I’m also pretty much blind, which a lot of people don’t necessarily take into account, especially not when they see the wheelchair. I use a guide dog, who has also been trained as a mobility assistance dog by IGDB, the Irish Guide Dogs for the Blind. I can’t read any print. Basically, in order to leave my own front door, I need to have the power chair and the guide dog. In order to function at home, I need to have Personal Assistance support for meals, cleaning, including washing my own hair, laundry, paperwork, filing… most things on most days I could use PA support.

I’ve had 15 hours of PA support for the last ten years, or maybe even more. Prior to that, I had 10 hours per week of support, and that was when I was, if you like, only visually impaired, not mobility impaired. With that 10 hours, and ambulatory mobility, I was able to be self-employed, running drama-based workshops, educational and arts-based workshops, as well as doing my own research into early Irish literature – which I still do some work on. (On Story Archaeology, which you can look up and subscribe to.)

I’m telling you all this because I haven’t been given any extra hours. I’ve been told to rearrange my existing hours, yet again. This is about the third time that I’ve applied for extra hours, and been told to rearrange my existing hours.

So the way it’s going to work is that I’ll be getting one hour of support each morning, and then one further hour each afternoon, and then I’ll have a spare hour somewhere in the week. I don’t know how I’m going to manage on that, but what I’m going to do is try and furnish you with daily reports, so that you can see how insufficient that is; and also maybe get a bit of insight into daily life with multiple disabilities; and how available support systems for somebody in my position are really falling so far short of the mark.

So I will leave it there for this evening, this being Sunday

the 5th of May. So tomorrow I will be going home. I’ve already ordered my shopping online, and my local supermarket has very kindly said that they can do the picking and delivery on a bank holiday Monday – because it’s me, because I’m a long-term customer of theirs. So big shout out to Glancy’s Supervalu of Carrick on Shannon! This is not a sponsored message.

I will check in with you tomorrow after I’ve had chats with at least one of my existing PAs, who’s going to be losing, I reckon, more than 50% of her current income, possibly having an increase in her travel expenses because of this rearrangement.

So wish me luck for the journey home tomorrow.

I will check in with you, O Internet of People, in 24 hours or so. Goodnight.

Here is the text of what I said in the above video:

 

Hello!

You may or may not know that, for the first time in the up-coming referendum, blind people – finally – have won the right to a private ballot. Up until now, there was no way to have a private ballot if you couldn’t read the ballot paper and write on it yourself.  As a  work-around, for many years, people like myself have been entitled to the postal vote. But in fact, this was a system that was set up for people who could not physically get to a polling station on the day of the vote. So it was used as a way of ensuring that people with disabilities, particularly in rural areas, could still manage to get a vote.

However, it was not a guarantee if you had a disability. A couple of years ago, in Dublin, my mother was turned down the postal vote because she had a guide dog and access to public transport.  It was deemed that she could get to her polling station without any extra assistance. So then it became an issue of: How are you supposed to vote privately when you can’t see the ballot paper?

Robbie Sinnott succeeded in taking a case to the Supreme Court [*] under the Equality Act [**]. It means that, this time around, in polling stations around Ireland, there will be a Braille and large print template that will sit over the ballot paper, which will facilitate people with visual impairments and blind people being able to vote on their own. However, this does not extend to the postal vote.

I am going to demonstrate to you why it does need to be extended to the postal vote. I have difficulty leaving the house sometimes. My pain condition fluctuates massively from day to day, as do my energy levels. It could well happen that, on the day of a vote, I would not be able to get out of bed or out of my house. I am also visually impaired. So I am going to show you why the postal vote needs to have that template as well, in order to make sure that I also have the right to a private ballot. Which, currently, I don’t.

[In this section, I am going through the papers in the envelope containing my postal ballot paper]

This arrived in the post the other day. [Opens envelope.] Inside, there is… well, there’s a big paper-clip, so I know there’s a load of things clipped together.

So, that is what looks like the ballot paper. Now, in this case, it’s a referendum, so there’s only a yes or no. That’s relatively simple for me to work out. However, I’ve been presented with ballot papers with twenty-plus names on it. In that case, trying to make sure that you’re writing in the correct box beside the correct person is a real lottery.

If there’s one thing an election shouldn’t be, it’s a lottery.

It also includes forms, and these forms and directions and all the rest of it – they’re all just in ordinary print.

I can’t read that!

In fact, I have to get my Personal Assistant to go through all the forms, fill out any bits of information that need to be filled out, and she just puts an X where I need to sign – and I sign it. Also, she has to determine which is the correct envelope to put the correct bit of paper in. I’ve been given two here and… [shrugs] I don’t know what’s on them!

And then… I think this is the instructions, which, again, my Personal Assistant has to read out to me.

Given that it’s a referendum, obviously it’s quite straight-forward. There’s a “Yes” and a “No”, and I’m pretty sure the “Yes” will be on top and the “No” will be underneath. Nonetheless, the principle of me also being able to access a Braille and large print template, which is a frame that would fit over the ballot paper… I think it has all the text, but in much larger print, and it also has Braille. I’d be able to lay it on top of the ballot paper, read the Braille, then there would be a nicely, clearly marked tactile box. I’d be able to stick a pen into the correct box and make my mark.

I can’t do that under the current system, and therefore the government has not yet actually extended the private ballot to all the citizens of Ireland of legal voting age in every other respect – apart from disability.

That needs to change.

Remember to get out and vote, however and wherever you’re doing it.

The referendum on repealing the 8th Amendment of the Constitution of Ireland takes place on 25th May, 2018… unless, like me, you’ve already voted!

[* The case was won in the High Court]

[** I was thinking in terms of the Equality Act 2000, which has had a number of updates since. The link takes you to the Irish Human Rights and Equality Commission, the statutory body for protecting and advancing human rights and equality in Ireland]

Arts Pilgrimage – Tomb of the Unknown Craftsman

I have just returned from two nights in London, largely on my own.  For anyone who’s travelled with a disability, you’ll know what a big deal that is.  Every micrometre of the journey had to be planned in advance; not just booking tickets and accommodation, but having to ring each company involved to check the level of accessibility.  And even with all that planning, it still wasn’t a straightforward journey.  not the worst I’ve been on by a long shot, but convoluted.
In preparing for the journey, I came across this incredible web site:
http://www.describe-online.com/
Their aim is to provide “access through information”, and they give detailed text descriptions of train stations, airports and other public areas around the UK.  Even if you’re not a VIP (Visually Impaired Person), have a look at it to see a model of Real Access.
The sole purpose of my journey was to visit Grayson Perry’s exhibition, “Tomb of the Unknown Craftsman” in the British Museum.  Despite winning the Turner Prize a few years back, Perry is a sincere, witty and humble artist and maker.  His primary medium is ceramics, but in this show, he uses textiles, iron casting and a variety of other techniques.
The show covers so much, it’s hard to know where or how to start describing it.  He has made and revived a number of pieces which are displayed alongside artefacts from the British Museum’s own collection.  It celebrates the craftspeople and anonymous artists throughout history and across the world, whose works are most usually seen as a impersonal expression of their culture or period of history.  But it also explores the role of the craftsperson in creating and subverting myth, religion, gender and power.  At the core of Perry’s work is his 50 year old teddy bear, Alan Measles, who has the role of symbolic father and personal god.
In one interview about the exhibition, Perry describes two elements of his nature as “the punk” and “the hobbit”.  The punk is the subverter, the over-turner, the irreverend, socio-politically aware commentator; the hobbit loves beautiful things, opulence, tradition, fine skill and rich materials.  It’s a mix that really appeals to me.
One central theme of the exhibition is that of pilgrimage.  The once-in-a-lifetime journey one makes to rekindle inspiration and meaning by being present to a special place or object.  Perry examines the role of the contemporary artist as the saint or demi-god, with galleries as great cathedrals of cultural orthodoxy.  The situation of the collection within the British Museum is central to this theme, with the museum itself represented as a destination of pilgrimage.  As such, Perry has disassociated his work from those who seek to elevate the status of their work by placing it in the sanctified gallery-space, and instead placing it alongside the global heterogeneous traditions of the world’s crafts.So I had to make my own pilgrimage to experience this exhibition in its proper time and place.  Here are some thoughts I had along the way.

Day 1:

Day 2:

THE NEW (or maybe not-so-new) APARTHEID

I first met Kiwi Katie about four years ago, when I was still using my legs and she had just started using a wheelchair.  The Citizens’ Information Board was conducting research into the housing needs of people with disabilities, and this was their final focus group: one which actually included a few people with disabilities.

Katie caught my eye – or more accurately, my ear – as another articulate, young and motivated person with disabilities.  It was something of a relief not to be the only person talking in the room.

We finally got a smoke break, and Katie and I got to talking.  At some point in the conversation, she described the experience of using a wheelchair as “apartheid”.  I was shocked.  It’s a very loaded term, especially for those of us who witnessed the release of Nelson Mandela with joy.

But Katie went on: “I can’t go in the front door – I’m sent around to the servants’ entrance.  Our toilets are segregated.  I can’t use the mainstream bus service.  I can’t get onto a college campus or into an employer’s business premises.”  And I saw, to my horror, that she was right.

 

The parallels between the experiences of people with disabilities and people living in an ethnically segregated regime were deliciously demonstrated for me in an unexpected form.  “Better Off Ted” is one of those rare, witty, intelligent, satirical US sit-coms – and yes, it got cancelled after only 2 series.  The “sit” of this particular “com” is a department of a massive and sinister multinational corporation, “Veridian Dynamics”, and the characters work in research and development and product testing – from cow-free beef (“the meat-blob”) to weaponised pumpkins via glow-in-the-dark squirrels.


*** SPOILER ALERT! SPOILER ALERT! ALERT! THERE’S A SPOILER COMING! ***

 

In one episode, “Racial Sensitivity”, one of our scientist buddies finds things in the lab mysteriously turning themselves off and on.  He tries to activate the motion sensors which control the lighting, then the doors, the toilets, drinking fountains, the lift… all to no avail.  The heroic Ted (his boss) goes to find out from Veronica (Ted’s boss) what’s going on.

The answer turns out to be that the company has upgraded all the systems in the building from being motion activated to being light activated; specifically, light reflected off human skin.  This means “it doesn’t see black people”, which Veronica is told by her superiors is a positive thing, since it sees Asians, Hispanics and Jews.

Rather than reverting to the old system, the company starts to install “Manual Drinking Fountains: For Black Employees Only”and the like.  Our scientist buddy at the centre of this says; “Thank God we don’t have a company bus”.

Their next attempt is to employ a bunch of minimum-waged white guys to follow every black employee around to “activate stuff” for them.  But Human Resources is concerned that this is discriminatory recruitment practice, so they’ll need to hire another black guy to follow the white guy who’s following the black employee, then the second black employee will need another white guy to follow him, and so on ad infinitum.  The case is finally made to the company bosses that they simply didn’t have the parking to employ every human being on the planet by 2012, and the old motion detectors are reinstalled.

 

The experiences of the black characters in this episode finding themselves unable to open doors, turn on the lights or use the lift are instantly recognisable to a lot of people with disabilities.  It even follows the parallel “solutions” of installing separate facilities for us, or of employing “normal” people to bridge that gap for us.  When the central character in these events (Lem) decides he’s had enough of this segregation, he says to his colleague, Phil: “I still have my dignity! Now will you please come with me so I can use the toilet!”  Sound familiar, fellow mutants?

 

This may be quite a convoluted way of making a point, but I think it’s a good exercise in context, perspective and humour.  It is valid to describe the supports and services and basic amenities available to people with disabilities as “apartheid”, and it is also valid that this is schocking.  So it should be.  I have no idea whether the writers of “Better Off Ted” had any thought in their head about disability rights issues, but they have nonetheless created a challenging, effective and funny picture of what it takes for person with disabilities to do those “simple” things that others take for granted, be it using a toilet or walking through the front door.

Adam Hills – Spokesperson for Mutants

A couple of YouTube clips of Australian comedian Adam Hills’ stand-up show, “Characterful / Joymonger” – some of the best commentary on disability in mainstream media!

My manual wheelchair, decoratively inspired by Adam Hills

My manual wheelchair, decoratively inspired by Adam Hills

Thus far, I’ve been unable to locate a clip of his suggestion to replace the term “disabled” with the term “mutant”, because “you’d think twice before parking in a Mutant parking space”.

 

The beginning of Adam Hills’ stand-up show where he introduces his sign-language interpreter.

Near the end of the stand-up show, Adam talks about some of the ridiculous comments and bureaucracy encountered in relation to disability