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

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

HIDDEN HEROES: Are you a Secret Superhero?

Do you have a secret identity hidden from friends and family?  Do you have talents and abilities that seem almost supernatural to others?  Do you fight for social justice and dream of a fairer world?  If your answer is “yes” to any of those questions, you might be a superhero and not realise it!

In the quest for positive images of disability in culture and the media, one might not think to look in the genre of superhero movies and comic books.  Yet here is where we find characters such as Professor Xavier, leader of the X-Men, who is a wheelchair user with extensive mental powers; and Dare-Devil, blind lawyer by day, vigilante crime-fighter by night.  It is easy to recognise these characters as having visible and recognised disabilities, but there is more to it than that.

The social model of disability (as opposed to the medical model) claims that disability arises from the failure of mainstream society to incorporate physical, sensory and intellectual diversity within its structures.  If the structures and institutions of society were designed differently, people who now have disabilities could be integrated into the mainstream without being at a disadvantage.  Superheroes live outside of mainstream society because their physical differences – flight, invisibility, telepathy, quick reflexes – are too far from social “norms” to be an integral part of the community.  For this reason, most superheroes have a secret “normal” identity with which they interact according to social expectations, and their secret superhero identity, where they can use their talents and skills to benefit society without that self-same society being aware of it.

Many people with disabilities with whom I have spoken feel a division or split in their persona, demonstrating to one part of society their disability and needs for support, while simultaneously demonstrating to others their independence and capabilities.  As a visually impaired person, I catch myself sometimes putting on an act of being “blind” – not making eye contact, very deliberately navigating by touch – so that people around me will be aware of my visual impairment without accusing me of “faking it”.  At other times, I find myself utterly belittling my disability to demonstrate that I am a capable, talented person; to show to others who I am without them becoming fixated on a white cane or guide dog.  The same is true of Dare-Devil (played by Ben Affleck in the movie), who uses a white cane for mobility when he is plain old Matt Murdoch, the lawyer, but who leaps from building to building using touch and hearing to fight crime by night.  Despite the chilché of those with sensory disabilities having almost super-human powers in their other senses to compensate, I have to admit that others often find the acuity of my hearing uncanny.  As if that weren’t enough, the same genetic condition that reduces my vision and makes me hypersensitive to pain, also gives me a hyperacuity in other senses.  Until today, when this subject was raised, I did not think it extraordinary  that I can smell cancer.  I can see how this ability might seem supernatural to others.

Superhero personae, as well as those of super-villains, are often created through trauma and accident – the Joker’s accident at a chemical factory, Batman’s witnessing his parents’ murder, inspiring a drive for vengeance.  However, it can just as often be a genetic mutation – the X-Men are all mutants shunned from mainstream society, the TV series “Heroes” where genetic mutations cause a number of “powers” to manifest.  It is particularly interesting to note that a character such as Daphne from “Heroes” develops a superpower (she can run mind-numbingly fast) in contrast to a pre-existing condition of cerebral palsy.  The film “Unbreakable” by M. Knight Shyamalan, starring Samuel L. Jackson and Bruce Willis, revolves around Jackson’s character, nicknamed “Mr. Glass”, seeking out and encouraging Willis’ character, who has never been sick a day in his life.  Mr. Glass was born with ostegenesis imperfecta, giving him brittle bones and limiting his physical life.  Being a fan of comic books, he believes there must be someone out there with an “opposite” condition to his own.  He pushes the “unbreakable”, super-strong Willis into taking a super-hero crime-fighting role, allowing Mr. Glass to assume the position of “super-villian”.  This film quite clearly shows how the medical model of didsability has pushed Mr. Glass’ character into a bitter and resentful pursuit of life: unfortunately, quite a common “super-villain” origin story.

Another aspect of the superhero myth with which people with disabilities can identify is the realm of bionic implants and prosthetics.  The X-Men’s Wolverine has an implanted skeleton of adamantium which gives him inbuilt claw-like weapons; Batman’s love for gadgets and gismos is well-known; and Robocop is brought back from the edge of death by being fitted with a range of prosthetics and computerised implants that make him the ultimate crime-fighting machine.

So, does your wheelchair or prosthetic limb enable you to go faster than your flat-footed compadres?  Does your ability to interpret sound and have a 360° awareness of your surroundings mean that you know what’s going to happen before everyone else?  Does your unique way of understanding and perceiving the world around you enable you to come up with solutions that “normals” would never think of?  Your secret identity may be so secret that you don’t even know it yourself…