Why Every Socialist Needs to Understand Ableism

Every time I hear a socialist commentator talk about “Working people” or “the Working classes”, I get a jolt of exclusion. I wonder about all the disabled people who never get an opportunity to work, who never imagine that they can work, or who have to contort themselves in order to work. What, then, does it mean if a whole sector of society – disabled people – are excluded from class analysis?

I have long wondered (and worried!) about where in the class system I and my immediate family reside. I grew up in a middle class area, with middle class educational aspirations and middle class guilt. But I didn’t grow up with money. I internally attributed this to the “artsy” nature of my parents’ work, which in itself straddled traditional class identifiers. For example, my dad played French horn in an orchestra, but he was shop steward for his union. My mum taught music in an affluent private school, but her part-time contract left her with a very paltry pension.

So, culturally, I grew up broadly middle class. But my adult life has been spent living on social welfare and in social housing. My mum and brother also live in social housing, and my dad is living in a house he inherited (along with debts and mortgages) from his mother.

And my reliance on social welfare is down to disability. In Ireland, as in most post-industrial nations, legal definitions of disability are inextricably linked with ideas of productiveness. Most supports for disabled people are provided on the basis that being disabled is identical to being unable to work. Indeed, a recent case at the Workplace Relations Commission featured the arbitrator saying to the disabled plaintiff seeking workplace accomodations; “Either you are fit for work or you are unfit for work”.

These binaries reflect precisely nothing about the experiences of disabled people. Yet, time and again, supports and schemes aimed at getting disabled people into the workplace are based on Victorian capitalist ideas of citizens as productive cogs in the workforce production line. As an example, one scheme introduced by the Irish government a little over ten years ago (based on my memory, not on documents!), was structured around compensating employers for the burden of employing disabled people. One element of this compensation was based on the idea that a disabled employee would be between 50% and 80% as productive as a non-disabled colleague. In other words, the scheme could not imagine, and did not strive for, the existence of a disabled person being just as “productive”, or (dare we say it) more productive than a non-disabled colleague.

Here’s the thing about work that is recognised, measured and rewarded. It is entirely performative. Disabled people work bloody hard every day. That’s because it takes work to negotiate an environment that puts pointless barriers in your way. It takes work to withstand the barrage of ableist assumptions you meet in every interaction with non-disabled people (and a fair proportion of disabled people). It takes work not to burst into tears when you’ve had to adjust your route home for the fifth time because some idiot has parked on the pavement or blocked your bus stop.

It takes oodles of work to navigate a social welfare system that presumes you to be a liar and a fraud, just to get some primitive assistance to get over these pointless barriers. So by the time a disabled person show up for work, for a job interview or even to fill out a job application, they have already done several days’ work if we are measuring effort and time.

But this is work that does not feature in profit-making calculations. It may have immeasurable value to a community, to the individual, to the world of ideas and cultural production. But if it is not seen to contribute to profit-making, it is worthless, and counts as a net drain on the economy.

This is a model of work that goes back to industrial revolution capitlism, when citizens and communities became workers and consumers. A disabled person was wholesale rejected from the capitalist equation, forced into work-houses and beggary. The term “handicapped” has its root here – disabled people on the street, cap-in-hand, dependent on scraps and breadcrumbs labelled as “charity”.

For the overwhelming majority of disabled people in 2022, we are still in workhouses or begging on the street. The workhouse may be dressed up as a day centre, supported or sheltered “employment”, and the “street” on which we beg is now GoFundMe or JustGiving.  Given a genuine choice, the majority of the 79% of disabled Irish adults would gladly go to work or develop a career.

It is hard, then, when 4 in 5 disabled people are systematically excluded from the world of work, to get behind an activist or organiser who represents “working people”, the “working class” or simply “the workers”. It feels as though we don’t even qualify as an oppressed group in society. If contemporary socialists really want to dismantle the capitalist systems of exploitation and inequality, why continually use the class identifyers put in place by early capitalism? Why are we not reimagining class structure to reflect society as it now functions?

If you consider yourself any shade of socialist or communist, you need to understand how and why disabled people have been so utterly excluded as to be invisible in your own discourse. Then we can talk about what a just society might look like.

I Can’t Afford to Get Paid

She says nothing.

I say nothing.

We both know there are no words

For the misery of women.

from Mamó: A Story of Geraldine Plunkett; ÓBrolcháin Carmody, Isolde (2016)

These are the final lines of my one-woman show, Mamó; A Story of Geraldine Plunkett. It is based on my great-grandmother’s accounts of her family’s involvement in the 1916 Revolution, including the execution of her brother, Joe Plunkett, as the youngest signatory of the Declaration of the Irish Republic.

You probably haven’t heard of my play, and you probably haven’t heard of me. But I’ve been working as an artist for over 20 years. I worked on this play from 2005 to 2016. As the story of a woman’s role in the 1916 Revolution, 2016 made a natural deadline to bring the work to audiences.

I worked with the generous and tireless Donal O’Kelly as director, and together, we devised techniques that would account for my impairments in producing the work. We recorded the script as an audio track because my visual impairment means I couldn’t read a print script. I performed the majority of the show sitting down to account for my chronic pain and fatigue. Finally, we filmed the show to minimise the physical toll that touring and performing would take on my body. All of these choices gave the piece a unique form and aesthetic of which I’m very proud.

I didn’t get to tour the play in 2016 as I had planned. This was largely down to funding: if I had received sufficient funding to tour the play, it would have counted as income according to Social Welfare. It would have counted as “means”, and my basic weekly Blind Pension payment (currently €203 per week), on which I depend to survive, would have been immediately slashed. So even if the tour had been funded, I couldn’t have afforded to pay for anything, let alone a tour. A gal gotta eat!

So without funding, and living below the poverty line on my Blind Pension, I couldn’t afford to tour the show during 2016. I couldn’t afford renting a wheelchair-accessible van plus driver to get me to and from venues. I couldn’t afford the hotels to stay in (B&Bs rarely have accessible bedrooms). I couldn’t afford the research to find theatres with accessible back-stage areas. Besides which, in 2016, I was waiting for a new powerchair, since the old one didn’t work in the rain. And I wasn’t granted extra Personal Assistance hours to help with navigation when my guide dog got too sick to work and then died.

Over the last 18 months (since the first lockdown), I have been sought out and offered money for my arts work like never before. The switch to online living meant that I could work without the constant torture of navigating a world built by non-disabled people. So I decided to register as self-employed with Revenue. For anyone else, it would feel like my career was really taking off, and that my work was being valued.

But, as a disabled artist, this is fraught with dangers. Any earnings over a mere €140 per week (recently upped by a generous €20) start to count against my basic Blind Pension income. And once this income starts reducing, the secondary benefits are immediately put at risk too. I have been on Blind Pension (BP) since I turned 18, and have relied on it, (along with the Free Travel Pass, Medical Card and Household Benefits Package counted as “secondary benefits”), to survive. (Interesting side-note: I am one of only 1,069 people currently on this strangely anachronistic payment, which is overseen by the Old Age Pension office. It’s different to Disability Allowance, for no logical reason I can ascertain).

And while I feel like I’ve been earning money for my creative work lately, here is a list of the things my paid arts work have paid for over the last 18 months:

• New underwear
• Dog food and vet bills (for my guide dog)
• An update to my screen-reading software (the latest release was the first to support hosting Zoom meetings)
• An iPad (the only device with good built-in accessibility)
• One phone bill (my phone is also my internet connection)
• Some toiletries

The screen-reader and iPad are tools without which I can’t work at all. To be honest, I couldn’t actually function day-to-day without them. There is no dedicated funding for assistive technology for the blind, yet we get left further and further behind our non-disabled peers without it.

The rest are the kinds of expenses you might hope would be covered by a basic social welfare payment. But they aren’t. The basic weekly rate is €203. Even if I was earning that magical extra €140 per week, it still doesn’t add up to the €350 per week which was deemed the minimum ammount for PUP when it was introduced. And living with disabilities is expensive! Note, for example, the need to use Apple products as the only devices guaranteed to have a high level of built-in accessibility.

There have been recent changes to the laws governing Disability Allowance (DA), called “Catherine’s Law”, which mean that a disabled student or researcher can take up a scholarship or research grant without it counting against their basic DA rate. There is also a disregard of €50,000 in savings which will not count against DA. The rate for the 1,069 Irish people on Blind Pension is €20,000, and Catherine’s Law has not been extended to those on BP.

There has also been recent coverage of a pilot scheme for guaranteeing a Universal Basic Income (UBI) for artists. It has already been pointed out that this scheme will not benefit the lowest-paid artists as it will impinge on the secondary benefits associated with Job Seekers’ Allowance, such as Rent Allowance payments. This applies equally to disability-related payments.

Catherine’s Law does not benefit disabled artists. UBI does not benefit disabled artists. Getting paid for work does not benefit disabled artists. That is why a group of Disabled Artists and Disabled Academics (DADA) has begun meeting to find a way to change these repressive and discriminatory systems.

However, most disabled artists I have met with to discuss these issues are afraid to publically discuss them. We are afraid that it may trigger a Social Welfare review into our meagre finances. We are afraid that it may brand us as “difficult” with funding bodies. And most of us are keen to spend our energies in our arts practices.

To me, these are screaming alarm-bells of systemic and institutional oppression of a group of people: disabled people. If Ireland is serious about being a signatory to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), the government will undertake an urgent restructuring of how disabled people are supported. In particular, Article 27 of the Convention which guarantees our right to meaningful employment.

Blind Pension and a Free Travel Pass felt like independence at the age of 18. But I’m in my 40s now. The gradual erosion of disability-related benefits and services, especially since 2010, means that I’m living much further below the poverty line now than I was then. And I need to work. I can’t sit around doing nothing. If you are an artist, or live with an artist, you’ll understand why. I will quote my old comrade, Tim Hannon, from a piece called “Why I Write” which we published in our independent school literary magazine, EatMeDrinkMe:

Sometimes I think I confuse the need to eat with the need to write… Why do I write? I write because I’m hungry.

“Why I Write”, Hannon, Tim; EatMeDrinkMe, Dublin, 1994

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.

Lockdown

Seriously, I’m grand.

Life under Covid-19 lockdown isn’t massively different for me than my version of normal. The biggest differences are that I’ve spent much longer on the phone than previously, and that when I order my weekly groceries, the official wait time for deliveries is 2 to 3 weeks.

It does feel somewhat that everyone else is getting in on my act. They are taking my delivery slots, using my mobile broadband and planning their outings. We’re coming to the end of March, and I’ve spent more time out of my house this month than I did last month.

I spent today with my head under a metaphorical duvet. This is not unusual for me, but I have reflected on why I chose that strategy today. It’s because I had intended to call back two people who called me during the week, and who I would really like to catch up with. I didn’t answer their calls when they came because I was resting or asleep when they called. This, also, is not unusual for me.

What is unusual is the sheer volume of calls and messages. It is nice when my neighbours call to let me know I can ask them if I need anything. But catch-up calls are a different matter. It’s got me thinking again about social spoons.

If you don’t know about spoons, read about the Spoon Theory on TheSpoonTheory.com.* It’s a concept related to pacing, which anyone who’s ever used an OT will be familiar with. To be fair, I didn’t know what Occupational Therapy was, even after I shared a room in college with someone who is now a professor of Occupational Therapy. I only encountered OT as a client when I first stayed in hospital attempting to get a diagnosis for my chronic pain condition. (That was in 2007, and I got my diagnosis of Hypermobility Spectrum Disorder in 2019).

Both Spoon Theory and pacing are about managing your limited energy and resources. There’s room in the market for a lovely app to help manage spoons, and design a pacing plan – I use a combo of 3 or 4 apps to do this. Having followed intensive pacing plans and found ways to pace myself under a variety of circumstances, I still have a huge problem with social spoon management.

Social encounters are important. They are so important that the HSE deliberately cut back on supports for “social hours” about 10 years ago. And my friends and family mean a lot to me. But it takes spoons to give someone quality attention. And the problem with managing those types of spoons is that you don’t want to take a break after 20 minutes of conversation. You want to keep going and get as much as you can from the contact. And then you’re fucked for the rest of the day. Or the week.

Maybe I need to think of these as “Emotional Spoons” rather than “Social Spoons”. After all, some people take more emotional work than others to spend time with, even if that work is worth it in the long run. I’m sure everyone (i.e. not just spoonies) has avoided a difficult conversation, or kept someone at arm’s length because something else needs your attention. And a good social interaction may be one where you leave with as many spoons as you arrived with – every spoon you spent on the other person gets replaced by the spoons that person spends on you. Maybe that’s asking too much. After all, the original “Spoon Theory” article revolves around the emotional power of how you choose to spend your spoons.

So really, I’m grand. The lockdown is more or less normal life for me. I had to rearrange or cancel several medical appointments during February (before the ZomPock). The bad weather and lack of access to transport was a bigger barrier to me having a life outside my house than any public health concerns. Two things I would ask, though: please don’t expect my capacity for long conversations to be magically increased because you suddenly have time on your hands. And maybe, when it’s all over, remember what it was like. Then, by all means, give me a call.

* I couldn’t access either TheSpoonTheory.com or ButYouDontLookSick.com this evening – it looks like the site is down. It does, however, have a Wiki page: The Spoon Theory on Wikipedia

Two weeks of Insufficient Support

Earlier today, I tweeted this thread:

twitter.com/madicarmoody/status/1130784542338572288

Here is the text:

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

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

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

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

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

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

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

@FinianMcGrathTD – shame on you.

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

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

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

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

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

(Simon Harris TD is currently Minister for Health.)

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

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

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

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

My Diary of Insufficient Support, Day 1

Hello again Internet!

It’s my first day home after 2 weeks in hospital. I’m pretty tired and rambling in this, taking the length up to nearly 9 minutes… sorry!

I had 2 hours of PA support after getting home this evening. Please keep sharing and discussing the issues around #disabilities, #IndependentLiving, #ChronicPain, #EDS and #VisualImpairment.

Until next time…

Click here to watch the video on YouTube

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.

Updating “Web Accessibility – Why Bother?”

I have begun work to update my post, “Web Accessibility – Why Bother?“, in the light of the Irish government finally ratifying the UN Convention on the Rights of People with Disabilities (UNCRPD).

(Note: it only took our government 11 years from signing the Convention in 2007 to ratifying it in 2018. They have yet to ratify the “Optional Protocol”, which would enable Irish citizens to hold the government to account in terms of implementing the Convention.)

I wanted to get a list of all the countries who have signed and ratified the Convention, so I followed a link to a page on the Office of the High Commissioner for Human Rights (OHCHR). This is the page I was brought to:

http://indicators.ohchr.org/

The only way the information I was looking for was displayed was in an untagged image map.

The upshot of all this is that I’ve just e-mailed the Office of the High Commissioner of Human Rights as follows:

Hi,

I have been researching the UNCRPD with specific reference to provisions for accessibility to digital information. I visited the following page to obtain a list of signatories to the UNCRPD and its optional protocol:

http://indicators.ohchr.org/

I could not find such a list accessible to a blind person using screen-reading assistive software, only an “interactive map”.

I hope you can appreciate the irony of being unable to access information relating to the right to access information! Can you please ensure that any information presented in a graphic is also presented in simple, accessible text? Otherwise, it could be embarrassing to the UNOHCHR!

Very best wishes

Isolde Carmody

Visually Impaired citizen of Ireland

You couldn’t make it up!

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]

Minister supports view that having a disability is worse than dying of cancer

Here’s the thing about Cervical Cancer: It can kill you. Quickly. Painfully. While you’re still young.

Here’s the thing about HPV (Human Pappiloma Virus), a causal factor in Cervical Cancer: You can contract the virus via skin-to-skin contat. You don’t have to have unprotected penetrative heterosexual sex in order to contract it.

This is a fact I was unaware of until I was in my thirties, and I thought I was very well informed about safe sex. I was well informed – about safe sex for heterosexual and male homosexual sex. I new about condoms. I didn’t know about dental dams.  I didn’t know that I was at risk when having unprotected sex with my girlfriend. In particular, a promiscuous ex-girlfriend who went on to develop pre-cancerous cells in her cervix after we had split up. Thankfully, I’ve always attended for smear tests under Cervical Check, and the lab used by my health centre happened to check for HPV at the same time as examining cells from the smear. Not all labs do this, apparently.

Here’s the thing about Gardasil, the HPV vaccine that has been made available to all teenage girls in Ireland for the last seven years. Even IF it caused the ME, Chronic Fatigue Syndrome and POTS that some people believe it causes, THESE CONDITIONS ARE NOT WORSE THAN DYING OF CANCER. To put your daughter at risk of dying of cancer in preference to putting them at (an unproven) risk of a chronic, disabling disease is to suggest that MY life is not worth living.

Minister of State with responsibility for Disability Issues, Finian McGrath TD, publicly rolled in behind this view. He has since back-pedalled furiously, but that does not undo the damage he has done in putting young women at risk of cancer while simultaneously supporting the view that dying of cancer is preferable to having a chronic health condition in Ireland. There may well be times when I might hyperbolically support this view, but I would still vaccinate every teenage girl in the world with Gardasil.

The health service here has to take some of the blame for the false connection having been made between receiving the Gardasil vaccine and the onset of ME, CFS and POTS symptoms. Chronic fatigue and chronic pain syndromes often present in adolescence. My chronic pain cymptoms were routinely dismissed as “growing pains” throughout my pre-teen and teenage years. Having reached 40, I don’t think I’ve any growing left to do (except horizontally), yet the pains are there, the pains are worse, and they have disabled me. What’s more, I have continued to feel ignored and dismissed by the majority of health professionals I have seen down the years. Of those I have seen by whom I haven’t felt belittled or patronised, only one medical professional has even attempted a medical intervention to improve my symptoms, and one other attempted to get me a more specialised and specific diagnosis than “fibromyalgia”. So when a grown woman using a wheelchair and walking aids is treated this way by our health system, I can understand the frustration and panic of parents watching their teenage daughter struggle with similar symptoms.

Another chunk of responsibility must be laid squarely at the feet of Fine Gael arrogance.  At the launch of 2017’s vaccination campaign in August, Minister for Health, Simon Harris, said that parents should “butt out” (sic.) of medical discussions unless they were medical professionals. The director general of the Health Service Executive, Tony O’Brien, described social media campaigns like the parent group, Regret, as “emotional terrorism”, and went on to describe how members of the public were being duped by fake news on social media.  This kind of language is confrontational, patronising, and in no way seeks to bring concerned parents on board. These statements tell concerned parents that they are stupid and ignorant, that they should just shut up and listen to what the clever men are saying, and should stop trying to interfere in the important businesses of state.

I cannot help but wonder if one factor in this kind of response is that the origin of the complaints is teenage girls. Are their experiences being dismissed as “hysteria”? There are many health issues that affect more women than men which go uninvestigated, under-diagnosed and untreated. Chronic pain and chronic fatigue syndromes are very high up that list. Whatever the motivation or unconscious assumptions behind these comments, I cannot see the use of phrases like “butt out” and “emotional terrorism” making a worried parent change their views.

And so these comments do nothing to address the serious issue of a drop-off in uptake of the HPV vaccine – a vaccine for which we fought a decade ago. Vaccination of teenage girls has dropped to a worrying 50%, despite the reporting of associated symptoms also having dropped.

But I would still much rather be in pain and unable to run, dance and ride horses for the rest of my life than have cervical cancer. Yes, cancer is generally not the death sentence it once was. Yes, survival rates and quality of treatment has improved beyond recognition. But it is still a painful, life-altering, misery-making disease that can end your life long before you’re ready to die. It strips you of energy, the treatments make you feel like hell and everyone around you feels helpless and miserable too. Given the choice, I choose to keep fighting from where I am – in a wheelchair, protected from HPV.

Note:

For the background to this story, please follow the links within the article. Some of these links may be subscriber-only content from the Irish Times. Apologies if you are unable to view the specific articles.