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:

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

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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.