Category Archives: #mebeforeableism

The Trump Card

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Like all of us, I woke up this morning to the horrible news that Donald Trump has been elected President of the United States. (Slow clap for those who elected him). Everybody I’ve spoken to so far is absolutely terrified of the wider-reaching implications this will have. Acclaimed author and recently turned television presenter Louise O’Neill wrote a long status on Facebook this morning expressing her fear for all people, including women, children and people with disabilities.

Once I saw the words ‘people with disabilities,’ I knew I had to write something in response.

Being an average Josephine on the other side of the pond, I can’t see what (some of) the people of America would see in Trump. He’s rude, obnoxious, racist, sexist, and every other ‘ist’ you can think of. He’s a modern day Hitler, with a warped vision and he doesn’t care who he has to hurt, sideline or destroy in order to reach this vision. But I have to admit, I wasn’t that surprised he was elected. The vast majority of people want change, but many are afraid of what would happen if it actually came about.

Just look at our own situation in Ireland for a second. We had a general election back in February, and everyone I spoke to about it was adamant that Enda Kenny would not get in again. His government made one of the biggest threats to Personal Assistant Services in the history of the State. Cuts made to welfare allowances, the creation of the giant money pit known as Irish Water… I could go on incessantly. And yet, our only alternative was to vote Independent (which I did) or to vote for Fianna Fail, who led the country into recession in the first place. (Whoever voted for Gerry Adams needs their heads examined).

So here we are again, and what are we going to do about it? Have a good old moan. Rant about it on Facebook. Write a blog.

After all, we can’t change the world, can we? We’re only small, insignificant people. So why bother, right?

This is exactly how I felt in work a year and a half ago. Working in the area of Independent Living for seven years and hearing about how hard people had to work to reach their goals. How many obstacles stand in their way: negative attitudes, inaccessible environments, fear of losing their benefits and their medical cards. I started to wonder how we could change all this, and my head hurt. And the more research I did into the discrimination against people with disabilities, the more disheartened I became.

Whether we are interested in history or not, our personal history, and our wider social history, are the cornerstones of who we are. And for me, as a disabled person (a person disabled by society) it was only when I became aware of this history that I developed a clearer understanding of what I was up against. Hitler’s T4 Projekt, which involved the ‘mercy killing’ of an estimated 700,000 people with disabilities, was a horrific act, but yet people with disabilities continue to fight for their basic rights, to live in their own homes, to do whatever they want whenever they want, to be recognised as equal. Elsewhere across the world, disabled women across the world continue to be forced into sterilisation, for fear that they will inflict more disabled children upon society. This is perceived to be a bad thing, because society dictates that it’s a bad thing.

Now that I know about all of this stuff, I can’t unlearn it. Born during the wrong era, in the wrong country, this could’ve been my fate. Who knows – the way the world is going it still could be.

As many of you know, I’ve been trying to  write a novel for over a year now, and the theme of the novel is exactly what I discussed above. It’s about a woman with Cerebral Palsy who’s been moulded by society’s low expectations of her, about her struggle to express her individuality in a world that wants to define her, and how, like all of us, the past has left a permanent impression on how she sees the world and her thought processes. Can a person ever be separated from their past?

Can our society?

The majority of us want a fair and equal society, but unfortunately this may have to happen in spite of, not because of, those in power. From the moment we are born, we are part of a machine. Some of us are seen as the core components, others merely the decorative extras. Some still are perceived to be the silicone packets that come in handbags – no-one seems to know what they’re for. We still live in a world where physical ability is prized over everything else, where impairment is seen as a weakness, where medical advances and robotic legs seem to be favoured over inclusiveness and equality for people with disabilities.

So Donald Trump is now the president of the US, and I think that instead of tearing our hair out we need to remain strong and calm, be we people of colour, women, men, children, people with disabilities. We need to look to the future and strive to achieve the world we want to leave to our children. We need to stand together, exercise love and understanding, and never settle for anything less than acceptance and equality. Change will only happen when we instigate it

After all, history should be used as a lesson. And if we don’t learn from it, then we shouldn’t be surprised when it repeats itself.

#mebeforeableism

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This isn’t going to be a long blog post (I hope). It’s one of these posts that I’m writing solely to motivate myself to do a bit of writing, and to unblock my brain (apparently, ‘writer’s block’ does not exist; I attest otherwise).

There’s been a bit of a shitstorm online over the last few days about the film, Me Before You, which is based on a novel of the same name by Jojo Moyes. Disability Activists have been  blogging furiously, slamming the (mis)representation of disability both in the novel and the film. The disabled character, Will, has chosen to avail of assisted suicide in Switzerland because now that he is paralysed following a motorbike accident, he doesn’t think that life is worth living. And *spoiler alert*, that’s exactly what he does at the end of the novel.

Is it wrong that I want to slap a fictional character across the face and say, ‘Cop the f**k on. You have to use a wheelchair, but you’re not the only wheelchair user in the world. You’re only in your twenties. Ah here?’ Is it wrong to want to slap the other characters for not slapping him across the face?

Over the last few days I’ve read Extraordinary Lives, a book compiled and edited by the Irish Wheelchair Association’s Joanna Marsden (who also edits the Spokeout magazine, a quarterly publication issued by the IWA), which paints some interesting pictures of disability. All of these stories have one thing in common: each person strives to be integrated into a society which sees them as deviant. They challenged stereotypical notions of being disabled and set about removing barriers to integration. They excel, not in spite of their ‘impairments’, but in spite of a society that doesn’t always think they are capable. Many of these people were instrumental in advancing the Independent Living Movement in Ireland.

I’ve been an active member of the Independent Living Movement for almost ten years now, and I worked in the area of Independent Living for nearly seven of those. During this time I saw first hand my fellow disabled activists protesting against cutbacks to Personal Assistant Services. I witnessed the introduction of medical card charges, the cutting of the Household Benefit Package, the scrapping of the Christmas Bonus.

I also watched what was going on in the UK, and what continues to happen: disabled people being refused their Disabled Living Allowance (DLA) because they weren’t ‘disabled’ enough to qualify; people being forced onto Jobseeker’s Allowance (JSA) after being told they were ‘fit for work’ (even though it has transpired that some of these claimants died afterwards either from terminal illnesses or suicide); disabled people being portrayed as ‘scroungers’ because of the benefits they claim,
leaving them to become victims of hate crime.

It has been hinted that Leo Varadkar is going to bring in a similar system over here, despite the negative press it  has received in the UK. Well, good luck to you Leo. I know of so many disabled people who have openly declared themselves as being available for work, and yet still struggle to secure paid employment. I know others who can’t afford to work because they will lose their medical card, making earning money a futile exercise. And you can launch as many disabled employment schemes as you like, but what we really want is to be accommodated in a ‘normal’ working environment, and recognised for our skills rather than offered a tokenistic job for the sake of massaging the unemployment figures. (Many disabled people don’t show up on the live register because they are on Disability Allowance not Unemployment Benefit).

So going back to Me Before You. On one hand it is just a story written by an author, doing her job as a storyteller, telling the story of her characters, one of whom just so happens to have a spinal cord injury. Fair enough. On the other hand, the reaction to it from  the disabled community should highlight how frustrated many of us are as being portrayed by Hollywood as hapless victims with nothing real or tangible to offer those around us. it’s time for us to stand up and show that it’s not that we are not worthy to live in society but rather that society must adapt and accommodate not only our physical needs, but our emotional and social ones too. We must teach people that our impairments do not make us tragic, and to be comfortable around disability.

Me Before You was written by a non-disabled author. Let’s not be afraid to write our own story.

* I feel I should point out that I use the word ‘disabled’ to denote people who are disabled by the society they live in, not their individual impairments.

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Budget 2016: What money can’t buy.

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In less than 24 hours, we as a nation will be picking at the bones of Budget 2016, due to be announced today. I’m sure as always spending increases and cuts will be debated all over the internet. It’s depressing to think of the citizens of this country glued to the TV and Radio, waiting to hear if the Government is going to be generous this year after seven years of cutbacks that have left many families struggling to pay their bills. But as we all know, election time is coming, so I’ve no doubt that serious attempts will be made to dupe the masses into thinking that this  government really cares about the average Joe. I doubt it. Many of us are still struggling to keep our head above water, and the homeless crisis is starting to spiral out of control. And for people with disabilities- well – many of us seem to be stuck in some sort of twisted time warp.

In recent months, there has been some much-deserved focus on the problem of people with disabilities being stuck in outdated institutions, where they are mere recipients of basic care. Many of these people are cut off from their local communities, and have little choice over their everyday lives. Every new HIQA scandal is a reminder that the current model of service provision isn’t working. About 8,000 people, 1,000 of which are under twenty-seven, are now living in residential institutions. I cannot imagine having spent my twenties in a hospital-like setting. I spent my twenties partying my way through college, getting work experience and going on holidays abroad. I chose to get married and have a child.  I live in my own home. As a thirty-one year old woman, I am doing well for myself. As a thirty-one year old woman with a disability, I am living a dream that some of my peers cannot yet access. And it’s not right.

A few weeks ago a man who I have known and respected for ten years, veteran disability activist Martin Naughton, staged a three-day protest outside the Dail and was joined by many colleagues and friends. He urged for this government not to spend €450 million on maintaining and building new residential institutions for people with disabilities and instead  to allow access to individualised payments that would enable us to choose the services we need to live equally and independently. Predictably, the protest ended on a disappointing note, with no concrete commitments made to improving service provision for people with disabilities. According to the group of protestors named the People with Disabilities group, more than 68% of service users are currently dissatisfied with services provided to them. They claim this is because the people who use these services are chiefly recipients of them and do not direct them themselves.

Let me ask you a question – who is more knowledgeable on what I need, me, or a team of medical experts who have had their noses in books for the last six years? Each and every person with a disability knows what they need, and what they don’t need. Every day government money is being wasted on organisations and institutions who claim to know what’s best for us. When you have the privilege of working in the disability sector for over ten years, you see first hand the effects of the cutbacks that were made during the recession. I’ve seen high dependency clients’ hours being cut to the bare minimum, often to take them out of bed in the morning and put them back in the evening. I’ve seen people having to fundraise in order  to have their houses adapted after acquiring disability because the Housing Adaptation Grant is no longer available. I’ve read stories where people are forced to choose between heating and food. Medical Card revocation, stopping the mobility allowance… I could go on and on.

I followed the response to Martin Naughton’s protest on social media and online papers, and of all the comments left on thejournal.ie, Suzy Byrne managed to clearly articulate the crux of the matter. She wrote: ‘We don’t need celebrities patting us on the head – all they usually do is turn up to rattle buckets for us and get pictures in paper. Same with most politicians – this is the problem – disability is not seen as a human rights issue but one of charity. And too many able bodied people benefit from this in terms of jobs and wages and status in society.’ Every year, after the pre-budget submissions and the announcement of the budget itself, there is silence. The media’s focus on people with disabilities tends to involve the words ‘triumph over adversity’ or ‘inspirational’ or ‘vulnerable.’ These articles tend to also use words ‘brave’, ‘courageous’ and ‘heroic’. There is nothing heroic about having a disability, but trying to push past condescending bullshit and trying to perceived as equals who have so much to offer this country is heroic indeed.

And that’s why we need the Government to listen to us, the experts of disability and spend the money (paid by us, the taxpayers – even those who don’t work buy goods and services) the way that we see fit in order to enable us to be truly equal citizens in this country, worthy of dignity and self -respect, not merely rattling coins in charity buckets. All we want is equality, and this is something money can’t buy.

Oh, and if Enda could deliver on his promise to ratify the United Nations Convention of the Rights of People with Disabilities, that’d be just peachy.

20 Experiences that you are likely to relate to if you have a disability in Ireland

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Hi there. Yes, it’s yet another disability post. Sorry about that, but, y’know, after living with a disability since birth and working in the disability sector for ten years, you become accustomed to the challenges facing people with disabilities every day in their quest for equality, respect, or sometimes just to be left the f*** alone to live their lives. If you are a ‘normie’, that is a person ‘without disability’, you might be a bit offended, and for this I apologise; you can’t please everyone and all that.

Here we go:

1. You are going about your normal business in your local Tesco and are reaching for an item when a stranger who has been watching you for half an hour (following you around the shop actually) pops out of nowhere to grab said item, startling you and causing you to fall on the floor. You look like a tit because you’re a grown adult who is now lying on the floor. Now they are pulling you up by your arms which is a waste of time because  your feet are not ready and bam! down you go again. Why do they let you out on your own?

2. When people can’t understand you because of your speech impairment and they start talking slower to you: ‘I – can’t – understand – you’. Well, I can still understand you, you tool, it’s me who needs to speak slower. Incidentally, I’ve been reliably informed that if someone has a hearing impairment/is deaf/Deaf, speaking slower makes things worse as the person may rely on lip-reading. So there.

3. When you try to order a wheelchair accessible taxi (the phone numbers for these are known by a sacred few) and are told that the taxi doesn’t operate past 11.30pm (come on, even Cinderella got till midnight) or that you didn’t book it four months ago,so no dice Ha, thought you’d be spontaneous, didn’t you? You thought wrong.

4. Total strangers think it’s okay to come up and bless you. Sometimes they grab your wrist, holding back tears. ‘You should go to Lourdes’, they say. I’ve been offered money to go to Lourdes and be cured. Guess what, people? I’ve been to Lourdes, and I’m still disabled. I want my money back.

5. You decide to stop being a heathen and go to Mass. I recently went to a dinner held by a disability organisation and there was a lovely Mass beforehand. However, there is something slightly disconcerting about having a Gospel where Jesus healed all the lepers and cripples when 75% of your congregation use wheelchairs or walking aids. Not that I’m equating disability with leprosy, but still.

6. You are an individual! You are You! So why is it when you see a person with a disability on the street are you likely to think, ‘I wonder do I know them’, and if you don’t, ‘I wonder why I don’t know them’.

7.  You ring Eircom/the bank/AES/Electric Ireland in relation to your most recent bill and they have those stupid voice activated menus. And then, after being on hold for 45 minutes, they disconnect you because they can’t understand you.

8. On a related note, people hanging up on you because they think you’re drunk, which saps your self-esteem so much that all you can then think about is getting very drunk.

9. Eejits trying to push your electric chair because they’re too silly to simply say ‘excuse me’. Incidentally, there is a way to manually push electric wheelchairs which involves unlocking the mechanics underneath it, which is handy if it breaks down. However, I can easily move the chair myself if I want – it’s amazing! Also, I’m pretty sure that if I lifted somebody out of the way in a queue, I’d get punched in the face.

10. If you are foolish enough to get angry or annoyed at anyone in 7, 8 or 9 above, you earn the dreaded ‘angry crip’ badge. Nobody like the angry  crip, or to use the more alliterative term ‘crip with a chip’. You think the whole world is out to get you. It’s not, it’s all in your vivid imagination. Get a grip.

11. Because of the strong support network provided by IWA and CIL (thanks guys!), it’s common for people with disabilities to befriend one another through committees, social events, etc. Beware that if you decide to meet up with your mates outside these circles, and you all have disabilities, you are guaranteed to have at least one nosy Nelly come up to you and ask ‘are you all out for the evening? Isn’t it great to get out?’ Er, out from where? Do people still think that people with disabilities should be institutionalised? Scary thought.

12. If you go for a drink/coffee/meal with your husband/friend/Personal Assistant/Family member, they may well be asked what you want to order. This is called ‘does he take sugar’ syndrome (no, honestly). Basically it’s an assumption whereby  you as a person with a disability cannot make basic decisions for yourself because you are a complete tool. No point in asking you so. You may hope for the best.

13. A noun refers to a person, place or thing. Just to clarify: a wheelchair is not a buggy, wheelbarrow or chariot; a person who uses a wheelchair is a separate entity from the wheelchair (a liberation tool), a person who uses these aids does so to get around, not just to get a pass into using the accessible toilet.

14. Which brings me to this point: sticking a wheelchair symbol on a toilet cubicle door does not make it an accessible toilet. If you cannot get the door closed when you bring your wheelchair inside the cubicle, then the toilet is not accessible. I’m sure the world does not want to watch people with disabilities pee, but hey, if it does, who am I to judge?

15. If you’re a bit of a gambler, why not head off for the day on the train? Sure, don’t they even have accessible toilets now? (not bad toilets either). Don’t forget to remind the train station staff ten times to ring ahead to your selected destination so that they can have the ramp ready for you. But don’t be surprised if, when you arrive, there is no sodding ramp and the station weren’t informed you were coming. Sure it’s no big deal travelling to the next station, begging them to get the ramp and let you off, and travelling back. Sure what else would you be doing?

16. If you’re a real daredevil altogether, get the DART. My husband nearly had his arm amputated by the doors of the DART when they closed on his hand and  then the DART proceeded to take off. He was on the platform and he could feel himself being dragged alongside the train. It took six strong men to pry the door open and release his hand. The reason why my husband had his hand in the door in the first place is because my friend and I were waiting for the ramp which didn’t materialise. What did we do? See number 15 above.

17. If you have a disability, you have to be nice, polite and well-behaved all the time. Telling someone to mind their own business does not go down well. Don’t let them know that we are real people, sssh! Some people with disabilities, just like you normies, are generous, kind and friendly. But others are just downright assholes. And guess what? Just because you know one, doesn’t mean you know us all.
18. People think it’s okay to ask you about your sex life. This is just wrong on so many levels. Why do people want to know this information? I blame programmes like ‘Little People, Big World,’ a show where a family explores their everyday lives in the public domain. I don’t want to hear about your sex life, don’t ask me about mine!
19. Having children is a gift, and there is a mistaken assumption that our children will be burdened by us and will have to care for us because we have disabilities. This will never happen as long as  the government realises that parents can be empowered through the provision of services and equipment that put us in the driving seat. Simples!
20. Finally, having a disability is not the end of the world, but people tend to think that it is. They find it incredible that we can be devoid of resentment or anger at the world for the hand we’ve been dealt. I know I have days where I wish I had more energy and less pain, but I’m sure even normies have these days. So stand (or sit) proud and tall. You are brilliant. You are fantastic. You are the subject of much speculation and curiosity. Enjoy it. Jordan had to get her assets enlarged for that sort of attention.
And all you do is go about your everyday life!
Well done, you xxx

A Scary Story

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It is three weeks to Halloween. You can tell this by the smell of turf lingering in the air at four o’clock in the evenings, by the sudden chill that envelopes you in the mornings, and by the faint sound of bangers being let off by the local ruffians.
Halloween seems to be the only time of year when it’s okay to be a freak; in fact, the gorier your costume and makeup, the better. You can even add fake blood, squelchy eyeballs and severed fingers to the mix for a truly horrifying effect.

What most people are trying to achieve is to look as unhuman and frightening as possible. I’ve been opening the door to excited trick-or-treaters for six years now, who stand there waiting for me to express my terror (and to hand over the goodies).

More often than not, it is they who end up full of terror.

What they see is a misshapen young lady, with sudden and uncontrolled movements, saliva flowing freely as she reaches her hand into the oversized tub of sweets, her speech slurred as she compliments their shop-bought costumes (I haven’t seen homemade ones for years). I can’t imagine what it’s like to be that young child on my doorstep, but it’s clear to me that my disfigured body and unusual movements are scarier than any costume they will ever see.

For somebody who doesn’t have one, having a disability can be a frightening prospect. I’m sure I’m not the only one that’s been told ‘I don’t know how you do it. If I had what you had, I’d die.’ My disability has often been referred to as a ‘handicap’, ‘illness’, ‘that’ disease (which is my favourite so far) and of course, like many others, I’ve been called retard, rehab, spastic (actually correct in a way, but not when there’s an ‘a’ in front of it), and other uncomplimentary things.

The truth is that people are afraid of disability, because being born without one does not grant you immunity from the possibility that you may acquire one by being in an accident, or even develop one, such as Parkinson’s or MS. Recently there has been speculation over whether being diagnosed with Parkinson’s led to Robin Williams’ suicide. We can never know for certain, but this sort of hearsay only reinforces preconceptions that disability is something to be dreaded, often a fate worse than death.

And in spite of the outrage that followed Hitler’s T4 Project during World War II (i.e. the mass murder of millions of people with disabilities across Europe, inspired by the concepts of racial cleansing and ‘survival of the fittest’), people are still afraid of disability. Some of the implications of this for people with disabilities are obvious, such as being stared at, and imitated by, strangers; being ridiculed for the way one walks and talks; being asked ‘is there somebody with you?’ as you mind your own business and wish that others would too.

However, lack of awareness and empathy surrounding disability issues have more devastating consequences than having to endure idiotic questions from Mr. Joe Soap. There was a conference held on the 25th September last in Kilmainham which addressed the financial and social costs of disability. Unfortunately I could not attend, but it seems like the biggest cost of disability is the loss of dign¬ity. A high proportion of people with disabilities live in poverty, unable to gain profitable employment. Many have lost their Household Benefit packages and their medical cards, and people with disabilities tend to face higher food and heating bills owing to their impairments.

Every so often, experienced disability activists stage well-publicised protests against cutbacks outside the Dail. These are the people who campaigned for equal rights and deinstitutionalisation for people with disabilities, nearly twenty-five years ago. How depressing that, nearly twenty-five years later, we are still campaigning for the same things.

And believe me, these things are fundamental to people with disabilities. All we want is equality. A lot of us need assistance to contribute to our economy, be this Personal Assistance or technological assistance. We need to be given access to goods and services through the provision of accessible transport and accessible business premises. Most significantly of all, we need to promote inclusion and integration in our communities by deconstructing the preconceptions surrounding disability and promoting the ability and strengths of each individual. If we don’t, things will never change and people with disabilities will be stuck in an endless time warp.

Which would be much more frightening than all the ghost stories on the planet.