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.

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.

We Forgot to Invite You – The Cruelty of Exclusion Through Thoughtlessness

A few years ago, I had a series of nightmares in which I was forgotten. One involved a group of my best friends getting together and going on my favourite radio show, and I heard the broadcast. They thought it would be a great treat for me, but I was deeply distressed that they never thought to invite me to participate in the show itself.

This is a feeling I encounter on a pretty regular basis. I get left out of the things I most want to be involved in because someone – or a whole series of someones – never thought to include me in the activity. Most usually, this is through genuine ignorance or forgetfulness, but that can feel more personally hurtful than explicit prejudice.

This is most often encountered via technology and new media. The scramble to optimise content for smart-phones has left non-visual learners and visually impaired people out of the picture from first principles. What I mean by that is that newer technological interfaces are deeply based on visual interactions. This is in contrast to traditional operating systems which are based on structured text. Text and code are much more open to non-visual representation.

I don’t have a smart-phone. I used to have an amazing mobile phone on the Symbian operating system which was one of the best accessibility aids I’ve ever used. It is irreperably broken now (it’s the motherboard that’s gone!), and I feel like I’ve been left ten years behind the rest of the world. I can no longer get a smart-phone type device without a touch-screen.

There are applications which purport to make touch-screen phones usable by the blind and visually impaired, but I can’t see the value in them. Sending a text message on a touch-screen phone would be like asking a life-long touch-typist (which I also am) to type documents using a point-and-click on-screen keyboard. Now, I know people who have written books using a foot-controlled pointer to pick out words letter-by-letter, but that was thirty years ago. For me, the sensible way to send a text is using the old numeric keypad. It’s galling to be asked to slow down my technological interactions by such a significant factor for the sake of sighted users getting to their information a wee bit quicker.

As my dear friend Felicity Ford put it, the exclusion of non-visual technology users from the smart-tech revolution is equivalent to a shiny new public building going up with flights of steps everywhere. Maybe they will put a ramp in, or maybe wheelies will have to find the servant’s entrance, ring a bell, wait for the back door to be unlocked and negotiate ten minutes of corridors and tiny lifts just to get into the public foyer. And by the time you get into the foyer, you discover that the people you wanted to meet up with have gone out to the smoking area, which is down a fire-escape. You’re left hanging out the door shouting down to your friends. Not the most inclusive feeling in the world.

I encounter both these forms of thoughtless exclusion at least once a day. The one that made me cry most recently was when I was told about a major public meeting discussing the exclusion of women in Irish theatre. I was told about the Dublin-based meeting the day before, and my first concern was that I can’t really travel across the country with less than 24 hours notice. I wouldn’t be able to arrange P.A. time to pack a bag, the train journey would be exhausting and painful, I probably couldn’t book an accessible hotel-room in Dublin less than a week in advance… it’s just not feasible unless I want to be out of commission for a week.

The promotion for this meeting and the associated campaign was largely done via Twitter. I don’t use Twitter. It’s centred around smart-phone users continuously scanning a huge volume of text to pick out relevant details. Any time I’ve encountered tweets over e-mail or other websites, I can’t make any sense of the constant abbreviations, hash-tags, usernames or links to pictures or articles. So I just don’t bother.

When I looked up the associated blog for this campaign, the first thing I discovered was that the tickets for the meeting were already sold out. However, there was a message saying they would try to set up live-streaming for the event, and that there would be tweets sent out over the course of the meeting.

The morning of the meeting, I checked my e-mail and the website to see if there was a link for streaming. There wasn’t. The website said to visit their Twitter feed for links to streaming. I tried going onto Twitter using a web browser, and was utterly overwhelmed by the volume of text, with no clear way of finding the one piece of information I was looking for. Lucky for me, I was on Skype with the wonderful Felix, and even before I asked her, she found the link to the stream.

That link brought me to yet another social media site, but it said I needed Flash to run the streaming (which I already have installed) and suggested using Chrome instead. I don’t know how to use Chrome with JAWS, so I exited Firefox and opened the link with Internet Explorer. There, the page said to try Firefox or Chrome, so I could guess where this chain was leading. It became clear from the streaming site that it was set up to run via smart-phones. The meeting had already been on for half an hour at that point, so I gave up and started to cry.

That was a morning’s work to get nowhere. Five years ago, I would have had it easier. For one thing, web accessibility was all the rage. We had the W3 accessibility guidelines, and companies like Google and Microsoft were busy building in screen-reader features to websites and applications. Then, tablets and smartphones became the huge money-spinner. The sighted world has leapt ahead in terms of communication, information access and entertainment, while non-visual learners find themselves left even further behind than we were in 2010. Assistive technology has come on in leaps and bounds since then, but all the development has had to focus on compensating for an increasingly visual world.

So I repeatedly encounter the feeling that my friends, or potential friends, are throwing these great parties. Some of these parties are upstairs with no lift access. Most of the time, they just forget to invite me.

The Case for Braille

Thanks to the luscious Felicia Day and her Facebook followers, I have just discovered 64 Oz Games. This is a small company creating Braille add-ons for board- and card-games. As well as bringing attention to the service, I wanted to share this particular post about why Braille is the best tool for VIP access to printed materials. It also suggests that the more Braille is available, the more VIPs will learn to use it. This is something I think really needs to be promoted.

In Ireland, services for the visually impaired are still largely constructed on a medical model. I got totally fed up of being encouraged to use my “residual vision”. The assumption was of acquired sight los, and that it was better to be as “normal” as possible, not giving in to the blindness label. This is very close to the approach of doctors and physiotherapists suggesting anything rather than using a wheelchair. That’s even if not using a wheelchair makes you so exhausted and pain-ridden that your life becomes a round of therapy, exercise and pain management, with nothing else to give your life actual meaning. Sure, I could use the vision I have, and take 2 hours to read one page of print, then have to rest for days before reading the next page. I’d much rather read in a non-visual format, using my “residual vision” to appreciate how the sunset looks this evening.

Anyway, Here’s the blog post!

Why Such A Focus on Braille? – 64 oz games