Tag Archives: disability rights

Thursday Thoughts: Going on a Job Hunt

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As I continue to recover from the hip replacement and five years of chronic pain, I’m rediscovering the joy of getting out of the house again. I’ve spent the last five years staying at home, only going out when necessary, such was the power that crippling depression had over me, so going out regularly, even if it’s just for a walk down the canal, feels like heaven. But it’s becoming apparent that getting out is costly. Even a bar of chocolate costs two euro, if not more. The cost of living has exploded, with things nearly costing double what we paid for them during the pandemic. I’m no longer a victim of chronic pain, and I know that I’m going to have to get a job. And it’s not just that I have to – I want to. I want a steady homemaking-physio-work-writing routine. It doesn’t bode well that even just typing that sentence is tiring me out, but I’m confident that once I get into the swing of things I’d be laughing.

There’s a slight problem, however. Okay, scratch that – there’s an enormous problem. I’ve done lots of voluntary and freelance work in the last eleven years, and I’ve done it while raising our daughter and keeping the house going. However, I haven’t had a steady job with a predictable income since 2015, so I wouldn’t call myself a catch on the auld job market. When Alison was in primary school, it suited all of us for me to be at home, ready to dash if the school telephoned or texted me. Now Alison is almost fifteen, and I feel like that stupid grasshopper who failed to prepare for the winter. I love being a mum, and I’ve had a tough time over the last few years adapting to the role of not being needed and being very needed at the same time. In four years, please god, Alison will be in college and with that, the day-to-day organising and keeping track of school meetings, basketball training, drama rehearsals and the likes will be gone. What will be my purpose then?

The last three years particularly feels like a waste. I know I couldn’t help the chronic pain, but the accompanying tiredness was so debilitating that even a once-weekly blog felt like a mountain to climb. Research suggests that pain can rewire the brain, and I think I was stuck in fight-or-flight mode for a long time. Now that the pain is gone, I’m now grappling with tiredness, possibly from the extra physio, but also the years of sleep deprivation and pushing through it all.

I also feel annoyed when I think of all the money I’ve spent on doing various courses in the hope that a combination of them would lead to meaningful employment. Unfortunately, many content creation and editing jobs are now being replaced with AI. I honestly don’t know how this can be justifiable, especially since most people I know would agree that it’s obvious when AI Has Been Used To Write An Article (grrr). There’s also been a shift in the last twenty years in how we consume material. Even I, a self-professed lover of feature journalism, don’t buy newspapers anymore, opting instead for news websites like rte.ie and thejournal.ie (being unemployed led me to cancel my Irish Independent Subscription).

And speaking of phone calls, for those of you who haven’t met me in person, let’s just say I don’t quite have a telephone voice suitable for working in a call centre, unless it’s a Guinness or Smirnoff call centre and they’re expecting to hear a drunk at the other end of the phone. Nor am I built for waiting tables (unless it’s a restaurant where customers love to have their drinks and  food rained all over them) nor, thanks to this hip replacement and the good old CP, am I suited to stacking shelves. Thankfully, I’ve never had any interest into going into the medical field. Can you just imagine these shaky hands trying to draw blood or insert a catheter? I wouldn’t let myself anywhere near me with a needle, and nor should anyone else.

I think back to when I first graduated from Trinity in 2007, clutching that precious English Studies degree etched in Latin (only for the parchment, I could’ve printed it off one of those dodgy templates on Microsoft Publisher. You know the ones, with the dodgy Latin text to show where your own text should go?). I was young, naïve and full of hope. I thought that I could juggle a number of jobs: Freelance Journalist, giving English grinds to Leaving Cert students, teaching creative writing and eventually churning out two novels a year a la Enid Blyton. It’d take a while, sure, but I believed that I would eventually secure that six-figure book deal that all writers fantasise about. Perhaps I still could: who knows?

But money, although useful to survive, isn’t my only motivator. It’s also about the embarrassment and shame I feel for being out of work for so long. Yes, I raised a child, but plenty work and raise children. When I’m asked, “what do you do?”, the answer is always different. Unemployed, self-employed, and occasionally, stay-at-home parent, which is the hardest job in the world, and that’s before you remember that there’s no sick pay or annual leave.  I had a rough few years, and I’m considering looking into counselling to help me process that, but now that I can look forward, the expanse looming ahead of me is frightening. I feel an irrepressible need to fill it with something purposeful.

Now, I know that a certain Cork-based sister is going to smite her forehead and contact me saying “This is not what we agreed. We agreed that you were going to focus on your physical and psychological recovery.” My mother’s body might be dead but somehow it feels that she lives on! And I am of course taking my recovery seriously, but the hip replacement has given me a new lease of life and I’m craving the satisfaction that can only come with being productive and having achieved something (Here it’s worth noting that, like Del Boy, I’ve always plugged away but haven’t actually achieved that much, i.e., completing my bloody novel).

In a bid to throw myself back into the labour market, I’ve joined Employability, an organisation dedicated to helping disabled people find work. My mentor is a fellow CPer, which helps when explaining my capabilities and limitations. There will be challenges, however, to finding work. The cost of living crisis means that many businesses are reducing their workforce, for example, shops introducing self-scan options, reducing the need for staff. Employers are looking for value for money, and may not be willing to gamble on hiring a disabled person who, while well capable of work, may need accommodations in order to reach their true potential. This is nothing new. According to the National Disability Authority, 32.6% of disabled people are in employment, compared with 70.8% of the non-disabled population. This is well below the EU average of 51.3%; in fact, we have the lowest percentage of disabled people in employment in Europe (Source nda.ie).

All of this isn’t exactly inspiring, but like many others, I shall persevere! After all, the best thing about being disabled, and specifically, being part of the Independent Living Movement, is knowing I am not alone, and that we are collectively advocating for change. In the meantime, I’ll continue applying for the jobs that crop up in my inbox, until such time I write that award-winning novel!

Questions, questions everywhere

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I love writing and reading about disability but I fear that I might have done so much of it lately that it has actually melted my brain into slush. When I look at an article by Dan Goodley or Colin Barnes, my brain shuts down and I refuse to take anything in, which is an enormous concern giving the nature of the course I’m doing (in case you’ve missed it, I’m doing the Certificate in Disability Studies in NUI Maynooth. I must be mad).

But during the Study Skills seminar  we had this weekend, it occurred to me that the reason I’m not taking anything in is because I’m not being critical – I’m reading but I’m not probing, not asking ‘why?’ or agreeing or disagreeing. And when I thought about it, I thought perhaps that’s why it sometimes feels that we’re moving further away from equality for disabled people – because we aren’t asking ourselves (and the powers that be) important questions about topics that need to be discussed in order for us to be recognised as equal. Questions such as:

  •  Who has the authority to decide what you can’t do – you or other people? Do ‘professionals’ always know what’s best for you? Do they always act with your best interests in mind?
  • Who profits from your impairment? I mean, seriously, a set of four wheelchair tyres can cost over a grand whereas a set of new tyres for the car is around two, three hundred Euro. My tricycle, I’m informed is worth about four grand, whereas you can get a state of the art mountain bike for a grand. An adapted car costs far more than the same model of car, unadapted. Why?
  • Why has the head of Irish Rail not been brought to answer a case under the Equal Status Act? If you’re a regular train user you might have noticed that there is a sign saying ‘We comply with the Equal Status Act’ in the wheelchair space. Can that be true if you have to give twenty-four hours’ notice to travel?
  • If a disabled person decides that their primary aim in life is to be an absolute twat, should professionals have the right to comment? To stop them? To safeguard them?
  • These particular questions are addressed time and again without being resolved: Does the Personal Assistant Service exist now as it was originally intended? Should a Personal Assistant have the right to comment on your lifestyle choices? Do they have the right to refuse to enable you to make these choices if they’re ‘not what’s best for you’? Who knows what’s best for you?
  • Should your right to your own Personal Assistant (and the hours you receive) be affected by the availability of a spouse or family member to act as your ‘carer’? What if you don’t get on with your family or they’re just using you as an excuse to claim Carer’s Allowance? (This has happened to people I know).
  • To what extent are we our  worst enemy? How much of the oppression we experience from outside sources is actually external, and how much have we internalised?  And in blaming  ourselves for being disabled, how much power are we willingly handing over to the powers-that-be, that make life-changing decisions on our behalf on a regular basis?
  • Is it dangerous to ignore the realities of impairment, and can we accept our impairments and limitations without handing over powers to the ‘so-called professionals?’
  • What will lead to the defining moment where disabled people can really be trusted to have full control over their own lives and budgets? I mean, why are disabled people being frightened out of trying Personalised Budgets/Direct Payments? Are they really that complicated, or are disabled people led to believe this so that (God forbid) they never truly experience any sense of control over their own lives?
  • If the UNCRPD has been ratified, why has there not been significant investment into Personal Assistance in the 2018 Budget? Why aren’t we building more houses for everyone, including disabled people waiting to move out of long-stay institutions and hospitals?

Achieving equality for disabled people lies in tackling these, and other tough questions. It means never settling, never accepting anything as a given without a logical and reasonable explanation. It means not taking equality as a given when many of us know this is far from the case.

When we stop questioning these important issues, we become complacent. And I think we can all agree that we simply cannot afford to do that.

 

 

Equality for all

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It’s the night before the Marriage Referendum. I’ve read articles and stories from both sides and I’m ready, as the slogan urges us, to vote Yes for equality. But being who I am, I can’t turn off my thoughts about the word ‘equality’ and what it means in 2015. And here’s why.

I know that I use this blog to prattle on and on about the importance of disability rights. I am aware of how one-dimensional some of my posts may seem to those of you who know that I am more than my disability and am proud to know Sarah (this isn’t directed at any dads in particular by the way). But here’s the thing: despite being periodically frustrated by my limitations, I have embraced who I am. I know that I try to be understanding, accepting and tolerant of all others, simply because that’s how I expect to be treated, even though it is not always the case. I laugh off the insults, the condescension, the ignorance because at the end of the day, it shouldn’t really matter what people think of me. I am who I am, regardless of the labels people throw at me.

Over the last few months I have listened, watched and read arguments in favour of, and opposing same-sex marriage. You haven’t been able to avoid it unless you live under a rock; it was even on the front page of the Tullamore Tribune this week. Politicians, celebrities and ordinary citizens talking about which way they are voting in the Same-sex marriage referendum. People sharing their experiences of what it’s like to be gay in twenty-first century Ireland. It’s amazing how this referendum has forced people to face such a taboo subject head-on. To examine what it means for people living in shame of who they are. To explore people’s anxieties and deconstruct their misconceptions. To hear both sides argue their cases so passionately.

Ireland has progressed so much, people say. But allowing same-sex marriage won’t stop homophobia or hate crime. And although so much has been done to ensure that Ireland is becoming a more accepting and understanding society, I have to admit I still don’t feel it.

In the last two weeks two separate incidents involving people with disabilities made the headlines. The first was a man who was left on a train when the ramp was not provided to let him off the train. He was let off twenty minutes later, and he commented that never before had his disability made him feel so vulnerable. The second one was a woman who was denied access to a Dublin Bus because a buggy was occupying the wheelchair area. One wheelchair space for fifty-odd seats seems a bit discriminatory anyway. These are not isolated incidents, as I know only too well from working in the disability sector; everyone has a story to tell about public transport in Ireland.

How can Ireland be viewed as being progressive if there are still people in society who cannot even access basic services such as transport? Why are we still highlighting the same issues over and over again?

I thought I was being paranoid, so I decided to do some actual research. According to a report by the National Disability Authority in 2011 on attitudes towards people with disabilities, the number of people who believed that ‘it is society that disables people’ fell from 62% strongly agreeing and agreeing in 2006 to 57% in 2011. Not a significant drop, but a drop nonetheless. Furthermore, there was a decrease in the number of people who think that people with disabilities should be treated more favourably in certain circumstances (i.e. when their disabilities prevent them from doing things that a person without a disability could do) from 80% in 2006 to 68% in 2011.

It occurs to me as I read these statistics that the changes in the attitudes of those who partook in the study may be due to the onset of the recession. Since 2008, funding that was once earmarked for disability services has been restricted and the needs of people with disabilities have had to be prioritised. Every year disability organisations make pre-budget submissions, outlining how further cuts will have devastating consequences for their clients. When you have a disability, you become costly; a report launched by Inclusion Ireland in September 2014 estimates that the extra cost of disability is roughly €207 per week. That’s not even provided through our (means-tested) disability allowance. And because of this people with disabilities are more likely to live in poverty; many are caught in a welfare trap, afraid to move into employment in case they lose their secondary benefits such as medical cards and travel passes, and consequently they are either seen as spongers or dependent on the state.

How is this equality?

Tomorrow’s same-sex marriage referendum will come and go, and whatever the outcome, one thing is for certain: this referendum has given so many people a platform on which to relate their personal experiences, voice their opinions, and persuade the people around them of the merits and disadvantages of same-sex marriage. Giving the Irish people the opportunity to vote for same-sex marriage empowers the people and puts the potential of equality for same-sex couples in their hands.

Imagine, this time tomorrow, the right to marry your partner regardless of gender could be a reality.

Maybe, one day, equality for people with disabilities could be a given, too. But in order to achieve this, we need to be more vocal, more visible. We need to make sure that our voices are always heard. Not just around election time but every single day. Only when true equality exists should we fall silent.

PS Yes Equality!