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

Web Accessibility – why bother?

So you have a working computer, an internet connection and some assistive technology.  That means you can access any webpage, right?

Wrong

It can be hard to explain what “web accessibility” is all about.  I thought I might furnish you with a couple of examples and a couple of general pointers. First, the examples…

Bouncers of the Internet – No blacks, No dogs, No blindies!

I’m sure you will have come across a “captcha” – that image of warpified text that claims to sort the machines from the humans.  Maybe you’ve even had a whinge about how difficult they can be to see.  If you don’t know what I’m on about, here’s an example from a Google page:

Screenshot of a visual captcha window from Google
Google Visual Captcha

I tried to understand the audio alternative about 15 times, then started to record my effort.  Bear in mind that I use JAWS, a screen-reading program that gives me audio feedback about what’s happening on my screen.  Every time you hear the word “Enter” and a slight pause, I have tried to submit my effort.  Instead of hearing the same audio again, a new audio file loads. I will give you some kind of prize if you think you can understand the words in any of the 16 captcha samples on this audio recording:

And that’s assuming the Captcha challenge even has an audio alternative, and that the button to request the audio alternative is tagged so that JAWS can detect it. These are by no means givens.

PDF – the universal format

PDF has come to be a standard way to access all kinds of texts. Sometimes, I receive a PDF attachment to an e-mail, which is supposed to carry all the information the sender wishes to communicate with me. Often, PDFs are used online for brochures and publicity – often graphics-heavy publications. They are also the standard format for academic papers and articles.

PDFs have plenty of accessibility features… if the author of the document has bothered to use them. More often, the author is concerned with how the text looks on the page, with neither thought nor care for the underlying code that orders the text. Weird things can happen to words in the most straightforward documents, with headings read as if each letter were on a separate line.

Here’s an example of how JAWS interacted with a price list for spa treatments. See if you can figure out what any of those treatments were or how much they cost…

Universal Access to All Knowledge?

The biggest kick in the teeth has to be my attempt to continue academic work. There are digital and online resources available now that I would have given selected body parts for when I was still officially a student. At the time, which is over 10 years ago now, I even attended conferences about digital humanities specifically to make known how they would be indispensible from an access point of view.

However, the effectiveness of digitisation varies wildly. The wonderful Internet Archive project, of which I’m a huge fan, still has no accessible means (i.e. keyboard-only) of uploading content. A search result has to be navigated using “G” to find graphics, rather than marking search result headers as headings. And then there’s the quality of the digitised texts themselves…

The quality of OCR (Optical Character Recognition) software seems to have progressed incredibly slowly down the years. Many OCR Engines seem to imagine that long text documents use an awful lot more random punctuation than I’ve ever come across. Exclamation marks (!) often appear instead of letters I and L, and capitalisation seems a matter of taste rather than of syntax. The word “arc” is apparently more commonly used than the word “are”… I could go on. Really. I could.

The fact is, if OCR is to have ANY value, it needs to be proof-read by a human being. Even then, JAWS will pick up the odd lower-case L that has been mistaken for an upper-case I. But just scanning a book and lobbing it up on the internet does not count as “Universal Access to All Knowledge”.

I have no desire to single out the Internet Archive as an offender. As I said, I love the project. It’s what the Internet was sent from Heaven to achieve. The most recent culprit (and I find at least one a week) for bad access I’ve run into (face-first) is Academia.edu. Never mind invisible buttons and menus that can’t easily be reached. Here’s an article I tried to read this evening. Apparently, it’s about Disability Arts. Here’s what JAWS says:

And here’s a few screen shots. I use visual themes on my PC which hurt my eyes less when I need to read the screen (at least I can still do that). The size of the text at the top of the first image should give you an idea of how big it has to be before I can read it. My mum uses similar settings, although she doesn’t use screen-reading software. So this is pretty much what she’d be faced with:

NOTE: This is NOT the fault of contributers to the site. It’s down to the programmers.

First Screenshot showing a paper on Academia.edu

Second Screen shot from a paper on Academia.edu

Third Screen shot from a paper on Academia.edu

Fourth Screen shot from a paper on Academia.edu

Fifth Screen shot from a paper on Academia.edu

That’s all I have the energy for right now. This is a big topic, and it affects me every single day of my life. No doubt, I’ll need to rant on it again soon…

Further thoughts on the Disability Arts Sector in Ireland

After recovering somewhat from the shock of the Irish Arts Council withdrawing from the ADAI scheme, I finally remembered another piece of news from December that sheds a different light on this decision.

Arts and Disability Ireland announced the Ignite programme, three large-scale commissions of work by professional artists with disabilities for 2014.  I was interested when I first read the headline, “Ignite Commissions Announced: Largest ever investment in Ireland’s arts and disability sector”.  But I felt a bit let down as I read the accompanying press release, since it wasn’t a call for submissions, but an announcement of a fait accomplis.  Three established professional artists with disabilities have already been commissioned to produce high-profile works with community groups of people with disabilities in Cork, Galway and Mayo.

I have no wish to take away from the importance of high-profile professional art created in Ireland.  But it now appears that this project has been undertaken instead of continuing to support a range of artists with disabilities in progressing their careers.  With the withdrawal of the Irish Arts Council from the cross-border Arts and Disability Awards Ireland, there is no longer a support mechanism for those of us who are not yet (nor may ever be) in a position to work full-time as artists and get international recognition.

This got me thinking about an issue that has nagged at me since my days at university.  People with disabilities are not expected to have careers.  Some of us may get jobs, but we are not presumed to have a specialist skill-set, personal ambition or take a hand in deciding just what we want to do with our lives.  For example, an employment scheme set up by government agencies to “encourage” employers to take on one of these dregs of society is structured on the assumption that an employee with disabilities will be between 50% and 80% as productive as employees without disabilities.  The scheme is designed to compensate employers for the inevitable loss of productivity associated with taking on a lesser person. This precludes the possibility of an employee with disabilities being either as productive or even more productive than other workers.

The shift of focus from the Irish Arts Council from supporting career development to high-profile projects, which involve only 3 artists who are already established in their arts careers, is another example of the neglect of people with disabilities’ wishes and ambitions.  I feel that this initiative is a way of making it look as though we have a thriving disability arts sector while simultaneously withdrawing the means for developing that sector.  This feeling is intensified by the structure of the Ignite commissions, where the work will be created alongside voluntary participants from community-based disability groups.  The majority of us are expected to be participants, not leaders or instigators.

Again, while I support the overall work of Arts and Disability Ireland, (the Republic’s counterpart to the Northern Irish Arts and Disability Forum), I have long felt that they have not prioritised supporting the career development of artists with disabilities. Rather, their focus seems to have been on people with disabilities as spectators, audiences, passive consumers of “mainstream” art.  I have no complaint about the availability of audio-described theatre productions, (even if they are mostly in Dublin and mostly mainstream popular shows), but this does reinforce the vision of people with disabilities as a passive, homogenous mass without individual tastes and desires.

It’s unsurprising, since most impoverished and excluded groups are treated this way by a thoughtless “mainstream”.  Gay men are not expected to have various tastes in clothing and music. Moslem women are not expected to have differing opinions about their role in society. The poor everywhere are expected to take the scraps they’re given and be pathetically grateful. So while it may not seem as though this move by the Irish Arts Council and Arts and Disability Ireland will affect many people, it is nonetheless symptomatic of an out-dated attitude from which we in Ireland have never really broken free.

Mobility Allowance Scrapped

This was posted by my dear friend, Kiwi Katie, in her blog on her business site, Adaptable Solutions.  Katie works as an accessibility and inclusion consultant, and is not a woman to mess with!  She rants so well that I thought it simpler to re-post what she has written about the scrapping of the Mobility Allowance and Motorised Transport Grant.

Pile of Rubbish

Yesterday, the Department of Health confirmed mobility allowance and motorised transport grants would be scrapped, despite Ombudsman recommendation for them to be widened to include people 66 and over.

Worryingly it has taken 13 years, since the introduction of the Equal Status Acts, to realize that people with disabilities exist both under and over the age of 66. Did they imagine that a disabled driver suddenly would not require modifications to their car, over the age of 66? Or that people over 66 never develop disabilities? Honestly, this notion alone is quite laughable.

Assurances have been made that the €10.6 million fund, formerly earmarked for the mobility allowance and motorised transport grants, will be utilised to meet the transport need of people with disabilities. However if this was sufficient to meet the needs of all people with disabilities then the scope of these supports would have simply been widened, as recommended. No matter which way you look at it, the 5000 people that currently rely on these supports will face cuts.

As a wheelchair user and a business owner, I simply couldn’t live my life or do my job without access to a modified vehicle. As a rural dweller, even if public transport was universally accessible, the nearest inaccessible bus stop is over a mile away and services are limited to twice daily.

Whilst the government is all too willing to consider the financial ramifications of the Ombudsman’s ruling, they seem to be completely ignoring the social implications. People are being made prisoners in their own homes and this will impact on society as a whole.

People with disabilities are: Parents whose children rely on them to drive to schools, clubs etc.; Employees / Employers trying to get to work; Consumers that play a vital role in the local economy; Over 65’s with family and community roles that continue long into retirement; Children whose unlimited potential is being stifled.

What is most abhorrent is that the value of people, with disabilities (and their families), has been completely dismissed. In a time when the government is aggressively pursuing measures to bolster domestic activity, people with disabilities are isolated. Continuous cuts in supports and services render full participation in society and the economic recovery, further and further from possible. Not only is this counterproductive, it is simply cruel!

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.

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…

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