Show me what you’re worth

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.

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Ten smartarse answers.

When I took time off work to write, I committed myself to writing an interesting blog three days a week. As you can see, I haven’t yet managed to deliver on this yet (but I have been writing behind the scenes, I swear-the results will be ready in twenty years’ time). When I’m not writing or doing laundry (seriously, there are only three people in this house – where does it all come from?!) I spend my time dossing around, window shopping or doing some errands. And it is rarely mundane, because invariably somebody comes over to me and asks questions that are inappropriate, strange or just plain rude. Recently I’ve started to wonder how people would react if I actually answered these questions with the first thing that popped into my head. I’m sure I would not be popular at all, at all, at all.

Question/statement 1: Are you on your own?
My answer: Yes
What I’d like to answer: No, I’m not on  my own. This is my friend Mary, behind me. Say hello to Mary. What do you mean you can’t see her? Mary, come on introduce yourself, don’t be shy.

Question/statement 2: Is that your daughter?
My answer: Yes. Isn’t she lovely?
What I’d like to answer: Oh my God did you not see us on the telly? What was the point? I’m mortally offended. And believe me, I’m just as shocked that I’ve managed to get her to three-and-a-half, you’re not alone there.

Question/statement 3: Will I get your purse  out of your bag for you?
My answer: Ah no, I can manage, thanks.
What I’d like to answer: Sorry I’m holding up the people behind me, I have misunderstood the definition of ‘queue’. Please feel free to rummage through my bag. Here, do you have a pen? I’ll write down my PIN code.

Question/statement 4: Do you ever wish you didn’t have a disability?
My answer: No, I’m happy the way I am.
What I’d like to answer: (?!@#’\) No, but I could do without these annoying questions. Now go away, I’m trying to eat my dinner.

Question/Statement 5: I think you’re great, a real inspiration.
My answer: Trust me there’s nothing great about me.
What I’d like to answer: Here is my dad’s number and my husband’s number. They’ve seen me at my laziest. They’ll soon set you straight

Question/Statement 6: It must be horrible, having to use a wheelchair all the time.
My answer: Ah it’s not all the time. It’s just for energy conservation purposes. I still walk sometimes.
What I’d like to answer: Nah, at least I can beat my toddler in a race. Ready, Steady, Go! WEEEEEEEE!

Question/Statement 7: So did you conceive naturally, or did you get help?
My answer: I was just lucky, thank God.
What I’d like to answer: Here is a forty-eight page questionnaire about your sex life. Don’t worry, your information will be kept private to myself only. I’m just curious, is all.

Question/Statement 8: Do you wash and dress yourself in the morning?
Me: I do indeed.
What I’d like to answer: Yes I do wash and dress myself,  do you? Oh yay, we both deserve medals! Because obviously the ability to wash and dress oneself is the most accurate way of measuring one’s value to society, and Stephen Hawking ain’t all that.

Question/Statement 9: Can you cook yourself?
Me: I can, and I’m a good cook.
What I’d like to answer: When I’m not running around with a fire extinguisher or nursing first degree burns, I make a mean microwave lasagne.

Question/Statement 10: Do you live alone?
Me: Well ..no… I live with my husband and child.
What I’d like to answer: Here is my address, and a map of how to get there. I’ll be out between the hours of nine and five.

I’m a pussycat  really. But sometimes I show my claws.

Budget 2016: What money can’t buy.

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.