It’s my f**king money….

This post is going to be about what it’s like to manage your money while blind. I’m sure there is plenty of prurient interest in the best way to scam a blindy, but I’m not going to cover that here. I am going to talk about just how useless, ableist and thoughtless government agencies and banks are when it comes to treating us as human beings with rights like everyone else.

My metaphorical eye (actually my ear) was caught by this Irish Times headline on 7th April 2020:

Coronavirus: Lack of electronic transfers for blind allowance causing hardship

The article by Social Affairs correspondant, Kitty Holland, was discussing the piecemeal approach of the HSE when it comes to issuing the Blind Welfare Allowance.  Some regions are offering to issue the payment via Electronic Funds Transfer (EFT), while other regions persist in sending out a physical cheque, which needs to be taken to a physical bank branch and physically lodged into an account. In this era of social distancing, self-isolation and cocooning, this presents a real challenge to blind people trying to stay healthy.

But the problems are deeper, further back in time and more bizarrely convoluted than that. Strap yourselves in…

You’re blind, not disabled….

If you are “registered blind” in Ireland, you are special. I mean that in the worst possible way. In terms of social welfare supports, we’re not treated like other disabled people. We receive the Blind Persons’ Pension, not a Disability Benefit. As the “Pension” part of our payment suggests, the payment is managed by the Old Age Pension office – just one of many examples of structural ableism, lumping the disabled and the elderly together. I’ve been a pensioner since I was 18.

Here’s one example of just how ludicrous that system is. While I was at university, I went onto the “Back to Education Allowance” – another misnomer, as I had been in education continuously since the age of 2. The allowance meant I could access an annual book allowance, and could essentially hang on to all my other benefits. When I finally left university, I was setting up as a self-employed sole trader, and wanted to switch onto the “Back to Work (Enterprise) Allowance”. Again, a misnomer, as I hadn’t been technically unemployed. Again, this was a scheme that facilitated me hanging on to benefits while setting myself up as self-employed. Imagine the day when I rang up the Old Age Pension office:

“Hello; I’m currently on the Back to Education Allowance, and I want to switch to the Back to Work Enterprise Allowance.”

“Ummm…. Hang on there while I transfer you to someone else.”

I got transferred about 5 times. Sure why would anyone in the Old Age Pension office know the first thing about either Educational or Work benefits?

So what’s this Welfare Allowance thing?

Good question. On top of the weekly Blind Pension, whereby I qualify essentially for the maximum amount of social welfare, there’s a means-tested Blind Welfare Allowance. I get this monthly, and it’s meant to “offset the additional costs associated with being blind”.  It’s not enough to pay for specialised eyewear, magnification, Braille production, assistive technology or even having a working iPhone, (rapidly becoming the de facto do-everything assistive bit of kit for blindies). My Welfare Allowance tends to cover getting an order of toiletries, some books, new underwear…. anything that isn’t a daily or weekly expense, but requires a bit of capital. Shouldn’t that kind of thing be covered by the weekly basic payment? Yes; yes it should, as many people on emergency benefits during the Covid-19 crisis have discovered. As soon as there was a massive increase in the number of people signing on for unemployment benefits, those who expected their jobs back afterwards kicked up shit about how little money they were expected to live on, and the government increased that payment from €220 per week to €350 per week.

I dream of such riches.

But there’s Braille on ATMs, right?

On to the banks. These are becoming less accessible as time goes on. The Braille markings on ATMs are really just adding insult to injury. Fine, I can tell that this is button number 1 and that is button number 6. But there’s no way in hell of finding out what those buttons actually do. I once tried to use an ATM that had a little headphone socket to hear what  was on the screen. In fact, I deliberately moved my account to that bank (which no longer exists) because they had a lovely ramp up to their door, push-button doors into the branch and this magic ATM. Imagine my surprise when no audio came through my headphones. It might have had audio information when it was first installed, but no-one had checked that it was still working. They might never have checked it at all.

But I’m sure many bankers have seen those Braille-marked buttons and assumed that it made the machines totally accessible. The concept can be quite difficult to explain to Ableds. I once had to explain to a local authority that their info-terminals were no use to a VIP, even with JAWS installed. If you can’t see the touchscreen, how do you know which part of the screen to touch to make it talk?

Then there’s the increased automation of bank transactions; a transparent move by corporations to save money by employing fewer humans. This is the same trend that has seen smaller, rural branches cut to destruction. My local bank branch has a load of machines which they do everything in their power to make you use instead of going to a counter and speaking to a human. By “everything in their power”, I include the practice of charging 600% for a “staff-assisted” transaction in comparison to an automated transaction. I’ll say that again. If you go to a counter and lodge your Blind Welfare Allowance cheque with a member of staff, it will cost you 6 times as much as using one of the machines.

Why not just use the machines?

I sincerely hope, dear reader, that you can guess where this is going. The machines are not accessible to VIPs. Furthermore, in my local branch, they are surrounded by privacy shields which don’t provide enough space to get near them in a wheelchair . So disabled clients have no choice but to make “staff-asisted” transactions, and pay 6 times as much for the privilege.

I’m not even going to approach the tawdry history of my struggles with online banking, especially with the use of card-readers with tiny buttons and invisible screens. Back to the Kitty Holland article…

Cheques and Balances

Aside from the usual thrill of coming across any mention of disability in mainstream media, this article grabbed my attention because I had just been sent a letter about this very issue. And yes, I mean a letter. In tiny print. In the post.

I could tell that it was from the HSE because their logo was on the envelope. So I didn’t even bother opening it until my trusty PA came round. She’s my trusty PA because she’s the one I trust to see me naked, file my private papers and have access to my bank details. When she arrived for work, I handed her the letter, saying “This is probably another normal-print letter from the HSE saying: We’ve just realised how ludicrous it is to keep sending you cheques when you’re not supposed to leave the house at the moment, so here’s a form you can’t read so that we can finally lodge the money straight into your account, which will also save your extravagant bank charges.” To my astonishment, my PA said “Yes, but not in those exact words!”

To recap, this was a letter and a form being sent out exclusively to blind and visually impaired people. Neither the letter nor the form was in an accessible format, and the form required filling in by hand. Their only nod to alternative formatting was the possibility of emailing the completed form back to them. So when I emailed it to them, this was the body text I included with my message:

Please find attached my form requesting a change to receiving my blind welfare allowance.

  • The letter should have been sent in an accessible format – I use Braille
  • The form should have been available in an accessible digital format.

My rights to financial autonomy and privacy have been violated, as I had no choice but to get a third party to fill in this form. Further, the form was not specific to people in receipt of benefits, and as such, was confusing and made us feel like an after-thought, not a priority.

As you are managing a fund specific to blind and visually impaired people, you should instigate policies of informational accessibility as a matter of urgency. It is your obligation under the UN Convention on the Rights of People with Disabilities (CRPD), to which Ireland is a signatory.

Why do I still have to send these messages to government agencies? Especially those tasked with supporting VIPs and disabled people? It’s getting old, and the novelty is wearing very thin.

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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]

Updates: MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Since publishing this blog post on Friday, I have done this radio interview with local station, Ocean FM:

https://soundcloud.com/oceanfm/visually-impaired-woman-under-house-arrest-due-to-lack-of-assitance-hours-nwt-mon-22nd-aug

Then, sitting in the doctor’s waiting room this evening, I heard this segment on RTE Radio 1’s Drivetime:

DriveTime – RTE Radio 1 – Monday 22nd August: Home Care Services

I have e-mailed the programme to point out the connection between the two stories. However, I don’t use Twitter! So please feel free to tweet @DriveTimeRTE

ORIGINAL POST:

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

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.

Direct Payments – Insidious Erosions

Today, I will be attending a “Solidarity Event” hosted by the Network of Centres for Independent Living.  This event aims to bring together representatives from Centres for Independent Living from around the country with TDs and the media, to publicly lobby to protect services for people with disabilities and prevent massively unfair cuts coming at us from a number of directions.

Now, we need this network, and we need events like this, but I’m not in full accord with the agenda. Top of the agenda is a call for our “leaders” (elected representatives) to commit to bringing in Direct Payments as part of a Personal Assistance Act.  There is no doubt that a Personal Assistance Act is long overdue in Ireland to enshrine in law the human rights of people with disabilities that Ireland have signed up to in a number of UN documents.  Since 1994, these documents have stated that access to a Personal Assistance Service is a RIGHT (not a privilege or a luxury) for people with disabilities, and that such a service be provided on the basis of the needs of the person with disabilities, NOT according to the miniscule budget allocated on a year-to-year basis by the HSE.

My main point of contention with this as the top item on our agenda today is the emphasis and priority given to Direct Payments.  “Direct Payments” sounds great, doesn’t it?  I heard it described by one disability activist as a “no-brainer”.  However, it has a specific meaning when it has those capital letters, as well as a specific history.  And in the context of the rights of people with disabilities in Ireland and the services currently available to us, it also has certain implications.

First to its meaning.  Direct Payments (with its fancy capital letters) refers to a scheme whereby a person with disabilities would have their needs for a Personal Assistance Service assessed, and would then have a lump of money given to them so they can employ and pay a Personal Assistant privately.  Currently, we have to go through a service provision agency, be that the Irish Wheelchair Association or a Centre for Independent Living, who administer the service according to the budget allocated to each individual service user by the HSE.  Of course, if you are miraculously rolling in cash, you can buy the service from a private company.  So Direct Payments would mean cutting out the “middle man” of the service provision agency.  And this is doubtless ideal for some people.

The history of Direct Payments is an interesting one, given the current climate in Ireland.  They were innovated in Europe by the Swedish, who have been trailblazers in the Independent Living Movement, and whose social democracy has put most other EU countries to shame in terms of creating a fairer and more equal society with an enviable standard of living.  Sweden had already established a Personal Assistance Service before anyone thought of Direct Payments.  So how did the idea even arise?  Simple: Recession.  When the country hit a rough economic patch in the 80s, services for people with disabilities were suddenly under threat.  Direct Payments were thought up as a way of selling PA services to the government, while making it look like an overall saving for the exchequer.  It looks like a saving because suddenly everything gets measured in “unit costs”, the government is saved all that fiddly administration such as drawing up contracts, organising accredited PA training and filing all those employer tax returns.

So in the context of Ireland right now, this makes the rosy glow with which a government department might view Direct Payments seem more like a sinister fog.  All the talk in the HSE now is about “unit costs” – a way of seeing each individual with disabilities as just that – individuated, without context, without community.  It turns the notion of a social economy inside-out. 

It is fair to say that Direct Payments would be, at least in the short term, a pilot project, offered to those who want it.  But given the way disability organisations seem to be screaming for it and heralding it as the ultimate realisation of our human rights makes me feel that it could become the expected norm.  In that scenario, anyone who didn’t want Direct Payments would once again be “a burden”, an awkward stick-in-the-mud who wants everything handed to them on a plate.

Here’s how I would feel if I was offered Direct Payments today (or even next year):

·              I have better things to be doing with my time than to become an employer and administrater to the people who are supposed to make my life easier

·              My PAs would be people who showed up to my house every day, rather than part of a network of PAs and Leaders sharing the ideals of Independent Living.  Who do I talk to if I have issues with a PA?

·              Currently, the HSE grants me 15 PA hours per week, and the PAs get paid approximately 14 euros per hour.  The vast majority of Leaders would say they could do with more PA hours than they currently have.  But if I were given the cash to pay my PAs 14 euros an hour for 15 hours a week, then the government would be giving 790 more euros per annum for their pay than the government deems it sufficient for me to live on.  That just feels like a kick in the teeth.  What about all the hard work I do to keep myself alive and be active in my community?  Is that worth less? Or should I stop trying so hard to be a complete human being?

·              If the government gave me that 10 grand a year in a big brown envelope, I’d rather spend it on buying and maintaining the power wheelchair I need (which the government refused to give me any money for); I’d spend it on the ludicrously expensive bits of assistive technology I need, like 5000 euros for a 40-cell Braille display; I’d spend it on a nice big double bed with the mattress and position adjustments I need rather than accepting the government’s offer of a hideous, narrow, uncomfortable, un-sexy hospital bed which is actually more expensive, but the hospital ordered too many so they just want to get rid of them.

 

And that’s not even touching on the massive issues of transport and housing that all people with disabilities face every day of their lives. 

But who am I to swim against this particular tide?  Prominent voices in the disability community adore Direct Payments, and governments like it because it sounds “empowering” (in a capitalist kind of way), and adds up neatly in the books which have no column for a social cost / social benefit analysis.  And given the current blasted Irish landscape, it may well come down to accepting that or accepting a return to the bad old days of dank institutions and blind beggars grazing their donkeys on the long acre.