Tag Archives: disability

Do I Have a Choice?

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What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.

 

 

Flying Low

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Readers, this summer my husband, the little ‘in and I decided to ‘staycate’ in Ireland. We spent a lovely week in Galway and then the two of us went north for a wedding towards the end of July. It’s been a nice summer, but now my husband wants to go abroad later in the year. And while I’d love to, part of me couldn’t be bothered with the rigmarole. Believe it or not, it has nothing to do with flying with our  five year old daughter – she’s more sensible than the two of us combined – but rather the worry about bringing the wheelchair with us.

Don’t bring the wheelchair, we’ve been told before. Rent one instead. Well that’s all well and good, but the truth is I like my wheelchair. I’m used to it, I personally don’t think it’s overly bulky or heavy (125kg),and it means in the airport I can take my time, if I check in early. Admittedly, however, I’ve only brought it once, when we went to Salou in 2015.

This was with Ryanair.

I am not exaggerating when I say I rang their customer service a thousand times to give the specifications of the wheelchair – the weight, make, dimensions and the fact that it had a dry-cell battery. Oh, and the fact that the back folded down. And it was, after all the phone-calls and emails, a hassle-free experience.

I have an Invacare Kite. The same wheelchair as my friend Dani McGovern.

Dani was in my house last Wednesday. She’d called over with her husband John and son Logan and we chatted about how excited she was about little Logan’s first time on the plane (they were going to Birmingham for the weekend with her sister, her brother and their kids). They’d only been away as a couple in Lanzarote  a few months before so they had no reason to believe there’d be any issues this time either.

But when I read Dani’s sister Sharon’s Facebook status yesterday afternoon, I immediately felt sick. The story, which Dani shared with the Irish Independent today, was that there was no issue with Dani’s flight over to Manchester, but on the way home she was asked for the voltage of her battery which she was unsure of (Neither of us have been asked this before. You’re normally asked if it’s a dry or wet cell battery. Wet cell = no flysies. Ours is dry cell). She was given the option of flying without the wheelchair (Dani can’t walk, unless she’s harbouring a secret I don’t know about) or getting off the plane.

Can you imagine being told that your legs were going to be amputated or somehow decommissioned? I’m talking shite now, aren’t I? That’s how much sense flying without Dani’s wheelchair made. So really she had no option but to disembark the flight, leaving her husband and her young son (who, like any two year old, went beserk without his mammy in his eyeline) and wait for the next flight, an hour later, where by some miraculous intervention her chair suddenly wasn’t a ticking time bomb and she could fly! Makes sense, doesn’t it? (Just like my handwriting).

What wasn’t detailed in the article was that this isn’t the first time Dani’s been messed around when flying. We went to Mallorca in 2007, Dani, John Paul and I, and we’d brought Dani’s manual chair for me because taxis over there don’t take electric wheelchairs of the size Dani’s was at the time so we thought we’d have her small one for taxis (and for me if I got tired). Good thing too, because when we landed, the cabin crew arrived with the manual chair but there was no sign of the electric one! Panic is not the word, lads – it was like we’d lost a limb. Eventually it reappeared on the carousel – how it got there I haven’t a clue. In the meantime. our accessible taxi had threatened to leave without Dani, in a foreign country where we knew no-one.

Dani never went to the media about that, and she was within her right to. But if she had not gone this time around she would’ve inadvertently been saying that this treatment is ok, that it was somehow her fault. But it isn’t, and was not.

In short. Dani is more than ‘a girl in a wheelchair’. She’s a college graduate, a woman who’s been living independently since she was nineteen, a woman who’s worked hard to prove herself in every way, and in spite of some negative running commentary is a fantastic wife, loving mother, loyal friend and passionate advocate. She certainly didn’t deserve that treatment.

And in telling her story, she is reminding us that none of us do.

Just Catching a Train (in 24 hours)

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I’ve a meeting in Dublin on Wednesday. It’s straightforward  getting there: if you’re going the public transport route, you simply get a train to Dublin, then regardless of whether you come into Heuston or Connolly Station, you can catch the Red Luas to Smithfield and then it’s a ten minute walk. Easy peasy. Shouldn’t be complicated at all, right?

No, it shouldn’t. But this is Ireland, and we seem to have a tendency to make things more complicated than they need to be. And for people with mobility difficulties, public transport isn’t as convenient as it is for others.

I went down to Tullamore Train Station this morning (according to the Irish Rail website, passengers needing assistance are ‘advised’ to give twenty-four hours’ notice) to let them know that I intend to travel on the 09.29 from Tullamore to Heuston on Wednesday morning. I admit I did it as a bit of joke, to make a point. The guy who works there is lovely – I’ve nothing against him as a person – but he was reluctant to guarantee that I’d have assistance on Wednesday afternoon coming home. ‘If I’m here, I will definitely help you,’ was his response. If.

The assistance I, and many other wheelchair users need, is simply the provision of a portable ramp to enable me to disembark from the train safely. That’s all. In my case my chair is electric so there’s no manual pushing involved. But without the provision of a ramp, my independence is immediately compromised.

Okay, I admit that giving two days’ notice is a tad dramatic. But my attitude isn’t without basis. Just last month, a young  wheelchair user got stranded on Platform 2 of Tullamore Train station and had to wait 30 minutes before it was decided that the train should pull into platform 1. The lift was out of order, as is often the case in Tullamore.

I’ve been stranded on a train twice before in my wheelchair because there wasn’t assistance waiting for me at the train station (and I always give as much notice as possible – okay, not always twenty-four hour notice, but I do try). It’s very annoying having to get off at the wrong station and either get a train or a taxi back. It eats into our time and financial resources. Our time isn’t viewed to be as valuable as everyone else’s, I don’t think.

Impairment doesn’t create inequality, society does. Having to give twenty-four hours’ notice to use a train is discrimination and yet, in spite of the many complaints made in relation to accessibility to Irish Rail (according to thejournal.ie, there were 12 complaints about accessibility in 2014. This 12 merely represents complaints made, not necessarily the number of passengers who experienced problems with regards to access), things seem to be getting worse, not better, for disabled passengers.

I’m not alone in experiencing these problems. Last year a friend of mine and wheelchair user, Ann Marie Champ, was denied assistance in Newbridge train station and was forced to continue to Kildare. (Ann Marie works in Dublin and commutes every day). Once in Kildare she had to wait for a taxi to arrive from Portlaoise to bring her to Newbridge. An enraged Ann-Marie remarked, ‘I flew to Australia last year and had to get six flights and had no issues. It only took five minutes over the phone to organise. Yet, I can’t get 20 minutes up the road because of the refusal to lower a piece of aluminium.’

Louise Bruton, the founder of a blog/accessibilty guide called Legless in Dublin, also had trouble with Irish Rail last November when the assistance she had requested in Heuston Station didn’t arrive, leaving her stranded on the train for twenty minutes. ‘The train was stopped further down the tracks than normal and the lights were dimmed, so I was in a scene from a 1990s teen horror flick,’ she told the Irish Independent. “I stuck my head out the door… I shouted again and again and all I could hear in return was my echo. I pressed the train’s emergency button but nothing happened. And then I tweeted. My responses gave me the emergency number for Heuston and, thankfully, Heuston’s very apologetic station manager, Liam Donegan, answered my call and rescued me.’

Ann-Marie and Louise’s experiences show that there is no dignity in travelling when you have a disability in Ireland. And now it’s been proposed by a Cork TD that travel pass holders should pay a subsidy of €6 for travel! For disabled people at least, this is outrageous. Many of us don’t drive and are solely dependent on public transport to get around. And even if was decided that €6 was reasonable, this still wouldn’t mean that disabled passengers would be guaranteed worry-free, hassle-free journeys.

I’m afraid I don’t have definite answers to these ongoing issues. There’s no doubt, however, that these practices are discriminatory. People need to continue to be vocal about this issue, because for me, as a contributing citizen, this isn’t good enough.

In the meantime, fingers crossed that I get to and from my meeting in Dublin on Wednesday, without incident!

Throwback Thursday: The Others

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I’m going through a bit of a writer’s block situation at the moment, trying to work through the messy middle of my novel and fix it into something that ties in with the ending. My concentration’s letting me down though, so instead I thought I’d look up the animation my sister did for her final year project, nearly six years ago, The Others.

The message behind The Others is that it is society that disables us and moulds us into a state of dependency. The piece is voiced by my good self and Dani McGovern, a friend of mine who also has Cerebral Palsy. Note how the negative narrative of the piece disables the two women, and distorts the physical form.

This is the exact message I want to portray in my novel, if I can ever get it written!

Anyhoo, enjoy!

Credit for this piece belongs to Laura Maye.

Meaningless rant on a Friday night

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I’m upset. And I know deep down when I’m upset that I should turn off the laptop, walk away and root out a tin of Celebrations from the spare room that ‘we’re saving for Christmas.’ But like a fool I can’t do that. I need to get this off my chest.

First of all, I’m upset with myself. I’ve been around for thirty-two years, you’d think with all of the physical and metaphorical knocks I’ve had in my lifetime my skin would be thicker. That stupid comments wouldn’t get to me.

Today, Ann Marie Flanagan, a disability activist from Clare, wrote a well articulated article for thejournal.ie about why Ireland urgently needs to ratify the United Nations Convention for the Rights of People with Disabilities. Unfortunately some of the comments on the article demonstrated the frightening ignorance of some of the Irish population. (I have said ‘some’ twice, I am not making generalisations, okay. Some of you are lovely). Yes, I know, thejournal.ie and trolls are well-known bedfellows. And like the gobshite that I am, I fed the greedy trolls.

One comment that was made was along the lines of ‘You need a PA to get things done and you thought it’d be a great idea to have a child?’ I don’t know this person from Adam, nor he me, but this isn’t the first time I heard this particular line. In fact, the first time I heard this was in the hospital the day after I had my daughter and I was walking to the toilet for the first time after the section. It wasn’t even a nurse that said it, it was an orderly (who we reported afterwards).  It wasn’t any of her business, but we weren’t going to go all angry  crip on her and run the risk of not being able to bring Alison home. Which nearly happened anyway when the head midwife suddenly, for no apparent reason, decided that we couldn’t go home because I was going to be a danger to my baby.

And that moment has never left me. I fought so hard to prove myself before Alison was born, and yet it wasn’t enough. And when I developed postnatal depression afterwards, I felt that I couldn’t seek help in case I accidently revealed some vulnerability and had my daughter taken away from me. There’s an underlying narrative to disability: everything is a struggle. That narrative begins from the day we are born. And I’m so tired of it, I really am.

I’m tired of biting my tongue every time someone comes over to Alison and says to her ‘are you looking after your mammy?’ I know it’s harmless banter, but I’m the parent, she is my daughter. She has her little chores but nothing like a carer’s role. And having a good PA service will ensure it always stays that way. Alison is very much a child, and will always be, because I am her capable mum. I have to tell myself this every day, and I’m sick of it.

I’m tired of explaining my personal choices to strangers, of having to reassure them that I know what I’m doing (I do have a Trinity degree after all) and having to wangle that degree into conversation to gain credibility from them.

I’m tired of the weight of history on my shoulders, a history that depicted disability as a fate worse than death, that it was perfectly okay to control disabled people and their families by denying them the appropriate services in order for them to live independently, which ultimately results in resentment of the disabled person by their families (Johanne Powell being the most recent example of this).

I honestly don’t know if I can change any of this stuff for the better.

But what I do know is that there’s a box of chocolates in the spare room, and while it won’t exactly change the world, at least I’ll go to bed on a (sugar) high.

Ireland and Disability: A Reflection of 2016

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International Day of People with Disabilities: 3rd December

 

‘Disability is not a problem to be cured, but a part of our identity and diversity’ – (Dynah Haubert, a lawyer in the US)

 

Are things really improving for people with disabilities in Ireland?

I’ve been picking my brains for the last two weeks trying to decide how I would approach this blog. As you may have guessed from the heading, today (December 3) marks an occasion called the International Day of People with Disabilities. As with Cerebral Palsy Day (October 5), I’m not exactly sure what having a specific day to recognise people with disabilities is supposed to achieve. Then it occurred to me that perhaps it isn’t about individual people as much as it is about reflecting on how we as a society have embraced disability and difference as part of Irish culture.

The year 2016 kicked off with the imminent General Election and the Disable Inequality Campaign. Activists across the country had the opportunity to meet with (interrogate) their local representatives and urge them to take the needs of people with disabilities into consideration. The ‘Disable Inequality’ Campaign itself was popular and created awareness of issues facing people in Ireland such as poverty (Newstalk reported on 27 September that 70% of people with disabilities struggle to make ends meet), lack of employment and the biggest thorn in our paw, the failure of the previous Government to ratify the United Nations Convention of the Rights of People with Disabilities (UNCRPD). Although everyone has human rights under the ‘normal’ UN Convention, the UNCRPD includes other things such as the right to choose your place of residence, the right to have a Personal Assistant and the right to be a full and active member of your community.

Indeed, the unnecessary institutionalisation of people with disabilities in Ireland continues to be problematic. The Health, Information and Quality Authority (HIQA) found that many residential services were not fit for purpose this year. On 11 November The Irish Times reported that a person staying in the psychiatric unit in Portlaoise was waiting twelve days for a shower. Children were staying in adult psychiatric wards, and one person commented ‘At least I’d get exercise in prison.’

According to independent.ie on 29 October, money was taken from HSE patients’ accounts without full clearance. The ‘mishandling’ of €136.3m of patients’ money and assets including bank accounts, pension books, property documents, investments and jewellery was attributed to staffing issues, which led to inconsistency when recording financial transactions. Well, dress it up however you please: this is theft of the assets of vulnerable people left in the care of greedy vultures.

2016 also saw the Paralympics in Rio, and our athletes brought home eleven medals in total (four gold, four silver & three bronze). Unfortunately Ailish Dunne (one of the Leaders with Offaly CIL) couldn’t compete owing to risks posed by the Zika virus. As with every Paralympics, it was great to see disability being portrayed as a positive thing, although there is still the misperception out there that if you have a disability, you are either an object of pity or ‘Superhuman’ (which so happens to be the name of a Channel 4 programme which explored this very issue).

The portrayal of disability in the media continues to be unbalanced. Some of it is positive. This year, the Blue Teapot Theatre Company in Galway (as seen on the award-winning documentary Somebody to Love) released the film Sanctuary, originally a play written by Christian O’Reilly which explores sexual identity in two characters with intellectual disabilities. The lead roles are played by Kieran Coppinger (Larry) and Charlene Kelly (Sophie), both who have their impairments in real life, and explores love and sexuality in an Ireland where it is illegal for people with intellectual disabilities to have sex (under the old Lunacy Act, which is now replaced by the Assisted Decision Making Act). This play/film has started a much-needed conversation around sexuality and challenges the perception of people with disabilities as being incapable of sexual desires. Most importantly, it highlights that sex is an important part of life, therefore breaking taboos.

Characters with disabilities in box-office films are often portrayed by non-disabled actors, as in Me Before You. However, there was particular disgust at a decision taken by fashion magazine Vogue in August 2016 to use ‘able-bodied’ models, photoshopped to look as though they had disabilities. Two Paralympians, Renato Leite and Paulo Vilhena, both of whom are amputees are said to be the inspiration behind the photoshoot and yet, their own photos were not used to promote the Paralympics. This sends out a negative message that disabled people themselves are neither desirable nor sexy.

Public transport continues to be an issue of contention for people with disabilities in 2016. Owing to staffing issues, wheelchair users across the country are required to give twenty-four hours’ notice to their local stations if they intend to travel by train. On July 2, 2016, the Wicklow People reported that Garrett Jameson from Rathnew was denied access to a local Bus Eireann vehicle, an inaccessible bus stop cited as the reason.  On September 8, the Irish Independent reported that Ann-Marie Champ, a wheelchair user who travels from Dublin to Newbridge to work every day, was refused a ramp at Newbridge and was told by the driver that she would have to get off in Kildare. After this, Ann-Marie had to wait an hour for a taxi to arrive from Portlaoise. On November 19, blogger Louise Bruton, another wheelchair user who checks venues for accessibility and then blogs on her own blog, Legless in Dublin, found herself trapped on a train at Dublin Heuston when assistance to help her off the train failed to arrive. She commented to the Irish Independent: ‘When it comes to a lack of disabled facilities, I’m sick of hearing that it’s a lack of money. The ones with the power to change anything aren’t taking action.’ These, sadly, are not isolated incidents in 2016 Ireland, just some examples of the ones that people had to courage to report. A time has to come when we say: this is not good enough.

And of course, in 2016 we were forced to bid farewell to a man who many of us in the disability community would count as a close friend, Martin Naughton. Martin, who had lived experience of institutionalisation, was responsible for bringing the Independent Living Movement to Ireland. He used every opportunity possible to spread his important message: that people with disabilities in Ireland deserve choice. They deserve to have access to services that will enable them to live wherever they choose, to pursue educational and employment opportunities and to make their own mistakes. In an interview with RTE in July 2016, Martin simply said, ‘The solution is not institution.’

Thankfully, newly appointed Minister for Disability Finian McGrath so far seems to be committed to Martin’s vision. On 20 June he announced an investment of €20m to enable people with disabilities who are currently living in institutions to move out into the community. This was hope to benefit 165 people living in 14 institutions, according to breakingnews.ie. McGrath said: ‘The Programme for Government wants a commitment to continue to move people with disabilities out of congregated settings and our objective is to reduce this figure by one-third by 2021 and ultimately to eliminate all congregated settings.’ However, the UNCRPD is still not ratified as was promised at the start of the year, so only time will tell whether McGrath can truly honour his promises.

So as you can see, 2016 has been an eventful year for people with disabilities in Ireland, but the real question is: are we really making any progress? Well, I can’t tell to be honest, but we are certainly becoming more vocal, and that can only be a good thing. It’s up to us as activists to vow to never stay silent, to always challenge injustice, to strive to live as equal members of our communities and society.

And that is what International Day of People with Disabilities is really about. The perusal of equality and fairness for all.

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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Show me what you’re worth

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Value and worth are based on  all sorts of things. There’s material value, namely, the kind of house you own, the kind of car you drive, the balance on your bank account. There’s emotional value, which I think means your support network, the people who are still there when you’re being whingy and clingy and annoying. In today’s fast-paced world, value is obviously placed on the person who can perform the most tasks within a set time frame. Words to describe this person might include dynamic, motivated, driven, dedicated.

From the cradle to the grave, it seems as if life can feel like a great big competition. Babies’ weight and height are constantly compared. From the moment our children start school, there are art competitions, handwriting competitions, sports days. Although our job as parents is to teach our kids that they can only do their best, somewhere along the these kids learn that it’s important to be the best, it’s important to win. Just today, my three and a half year old daughter came home, devastated because she didn’t win a game of musical chairs at playschool. She’s learning that sometimes she loses, that she can’t win all of the time. This is something that I as a parent must teach her, and yet, I can empathise with her. I know what it’s like to lose in a world where winning seems so important.

As the loyal followers of my blog will know (hi dad!) I’m on a six month career break at the moment, and although I am enjoying it, it’s hard as well. We are born into a society where we are taught from an early age that having the best job, the highest paying job is something we should aspire to. As a person with a disability, our narratives are quite different. First we are born, and most of the time our parents are told not to expect too much. If we live past  a week or two, that in itself would be a remarkable achievement. Our parents don’t love us objectively, however; to them, we are everything. They push us through the system, ignoring the derogatory comments, challenging the lack of educational supports, tolerating being called delusional and stubborn. They don’t accept that their children are not worthy of equal treatment, and in turn, as we grow older, we must continually challenge the system too, proving ourselves to be capable, autonomous individuals.

Historically, man’s worth has always been connected with their physical and intellectual strength. During the Stone Age, people with physical impairments were often left to die. During the Christian era, people with disabilities were viewed as objects of pity, as charity cases. Then of course Charles Darwin came up with his riveting ‘survival of the fittest’ theory, a notion that Hitler took very literally as he carried out ‘assessments’ on people with disabilities, where he decided whether people could live or die based on their physical and mental capabilities. Granted, Hitler was a lunatic – few would dispute that – but in spite of how controversial his plan of creating the perfect human race was, sometimes it feels that we haven’t moved far from the idea of equating somebody’s worth with what someone can physically do.

When I was in college studying feminism, we used to discuss something called ‘the virgin/whore dichotomy’. Basically, it was this notion that women were either one or the other, and that in failing to live up to the  ideal of  the perfect virginal woman, they were imperfect, damaged, inferior. I often feel that when a story is told in the media about disability, the subject is either portrayed as being super-inspirational or vulnerable. You know the stories I’m on about (I’ve  written some and been the subject of others), they normally go along the lines of ‘Despite being in a wheelchair and taking ten tablets a day, Joe has managed to learn Chinese and Computer programming,’ or ‘Because of the cutbacks to her Personal Assistant Service, Emma may not be  able to enjoy living independently in her own home for too much longer.’  Stories like the latter are often the only way to highlight how the recession has affected people with disabilities. We sacrifice our  dignity in order to get our point across. And I believe this should not be necessary.

People with disabilities have much to offer society, and they are worth far more than a paltry €30 on a Jobbridge Scheme. All the new plans to create jobs for people with disabilities are laughable because many of us don’t want to be segregated from the main workforce. All we want is equality, which is not the ability to do as much as our peers, but to be recognised as useful, productive members of society.  Hopefully the UN Convention on Human Rights for People with Disabilities will be ratified next year, even as a tokenistic gesture that everyone should have equal rights.

We are worth so much to society, and now it’s time for us to be more vocal and construct our own narratives. There is no  need to feel small and insignificant. Shout loud. Make sure your voice is heard. Don’t let people  make you think that your issues don’t matter because they’re only perceived to affect a small number of people.

We deserve equality, in spite of our limitations. We are worth  nothing less.

A Crip With A Chip

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My name is Sarah Fitzgerald, and I have an awful confession. I think I have turned into an angry person with a disability. A ‘crip with a chip’, I believe we are referred to.

I hate ‘angry crips’, or at least I thought I did, until recently. I’ve come across many people in my life who I would’ve dubbed an angry crip at one stage. They are portrayed as believing that the world is against them. They seem to moan about things all the time, but yet they don’t do anything about anything, because they think it is pointless. I used to think it was laziness, selfishness, that they wanted everything handed to them. Yes, I am ashamed to say that I used to view the angry crip as some sort of moaning Michael.

As life changes day by day, so too does my perception of the angry crip, because I’m starting to think that maybe an angry crip has every right to be angry. Maybe it’s old age, maybe it’s cynicism. I personally think it’s I-don’t-think-I-can-take-more-of-this-crap … ism.

In my previous blog, I wrote about the expectations we have of ourselves and how we sometimes go to extremes to meet these. Some of these expectations come from within, but there’s no denying that society and consumerism create them too. When my daughter Alison sings ‘Let it Go’ and particularly ‘don’t let them in/don’t let them see/Be the good girl you always have to be,’ I cringe inside. I know Elsa sings them with irony, as a reminder that society expects women to act a certain way. I just don’t want my daughter to feel pressured to become anyone less than who she is inside.

I must confess that over the years I too allowed myself to aspire to perfection. A grade-A student in school, who from the outside struggled through adversity and completed the Leaving Cert. Teachers would look at me in awe; I would look at them like they were demented. ‘But you still get on with things, despite everything, aren’t you great?’ they would gush at me. My parents never said this to me and I love them for it. I went to college where, let me assure you, I never heard how great I was once. I wasn’t treated differently at all, and it was there that I gained a sense of what it was to be equal.

And then I was flung back into the real world. A world where people stare at you while you’re having your lunch, having full-blown conversations about you (‘the one from the telly’), your walking (‘she’s very shaky, God love her’) and your disability. This used to not bother me at all, but now it’s difficult to resist the urge not to go over and say ‘I’m sorry, can I help you? introduce you to the art of whispering perhaps? Because I can hear what you’re saying from the other side of the restaurant.’ But I never break my resolve, and you know why? Because I don’t want to be known as the ‘crip with a chip.’

My resolve has been tested so much over the last few months. I watch as people can’t access education and employment because there are too many obstacles. I was in a queue in the bank recently, in my wheelchair, and a woman said to the person who was ahead of her ‘I need to hurry up cause I have my mother in the car in the wheelchair space so I wouldn’t need a ticket.’ (When I told her this was wrong, she ignored me.) And you know, the usual that all of us put up with at some stage or another: the taxi man asking my friend who was putting me into the taxi where was I going (I didn’t know, apparently); a shop assistant taking my wallet off me, looking for change because I was taking too long to find it; a woman asking me where my mother was as I dropped my handbag and started scooping up all my change (‘Who is with you?’); people talking over my head (‘she wants the chicken roll’). And you are expected to keep schtum and smile. Well, sorry, no. I’ve had enough.

Two things tipped me over the edge today into writing this ranty blog. The first was seeing an interview of two veteran disability activists from the US, Ed Roberts and Judy Heumann (who I met in 2011). The interview took place in 1984 and Roberts and Heumann were talking about the need for people with disabilities to have more control over their own lives. ‘There is a lot more to life than being physically perfect,’ Roberts said. Judy Heumann said, ‘Disabled people have to fight harder in order to be able to make it in the system… if they want to live the life that they want.’ In their opinion, people with disabilities need to be seen in positions of power in order to be taken seriously, and they need to work together in order to achieve this. Judy adds: ’I question whether disabled people have achieved democracy and solidarity’. Although this interview is thirty years old, it is unfortunately still relevant today.

Then I opened the local rag to reveal the headline, ’24 hours’ notice required if assistance needed to get on train’. For a moment I thought I’d entered some sort of time warp, but no, this was an article written in 2015. I was outraged and posted this on Facebook immediately, to which some of the responses included, ‘yeah, this has always been standard practice in our local station.’ Eh, really?! How can anyone think this is okay? Have we become so complacent as a society that we not only witness discrimination every day, but think that it’s to be expected? That it’s now just a part of our psyche, part and parcel of having a disability?

No, sorry now, but from where I’m sitting I’d rather be perceived as the angry cripple and be vocal about these very real issues than give into the status quo and say nothing. Because if we don’t start channelling this anger into making real changes in our society, then we might as well watch all of our human rights slowly disappear. And if we don’t start making these changes, us ‘crips with chips’ will always have something to be angry about.