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.

Owning my limitations

I have a confession, and anyone who knows me will appreciate how difficult it is for me to say these words. I think I may have some limitations. When they read this blog, my husband and my dad will probably read the italicised sentence a few times, just to make sure they read it correctly. I hate admitting I can’t do things. Quite frankly, failure makes me feel weak and pathetic, and instead of learning from these experiences and moving on, I persevere until I’m certain it can’t be done.

Alison has recently started nagging me to teach her how to use a skipping rope and hula hoop. As I have serious coordination issues, I can’t do either, and it makes me feel stupid. I fob her off with ‘someone else will teach you’, but sooner or later she will want a straight answer to these questions and just like that, I will be forced to once again accept my shortcomings while hating myself just a little inside.

There was, of course, a time when I was completely oblivious to what my limitations were. Here are some of these times. Rest assured that I am sitting here blushing behind the glow of my laptop screen.

  • I love writing, as in writing things down by hand. To feel the pen glide (or dart when you have involuntary movements) across the page is one of my guilty pleasures. Alas, my handwriting makes the doctor’s worst scribbles easily legible. As a child, I loved writing in notebooks and diaries (as all little girls do) and fought tirelessly with my parents because I couldn’t see why I couldn’t write like the other kids. I wrote all of my Leaving Cert notes by hand because that’s how I remember things best. My parents cruelly forced me to use a computer and laptop instead. Sure, doing so enabled me to go to university after doing my Leaving Cert, but that’s not the point. I will never admit they were right (pig-headed, moi)?
  • I spent about a month when I was eight trying to cycle a normal two-wheeled bike with stabilisers that Santa had brought me. It was only after about seven falls, countless bruises and a deep scrape that went from my thigh to my ankle that it dawned on me that this wasn’t going to work.
  • I tried both skipping and French skipping in the playground. These trials didn’t last long as I didn’t know how to jump. After a while, I gave up, but I wasn’t very happy about it.
  • I was never good at knitting or sewing, but I kick ass at weaving, as I discovered in second class. The teacher gave me a weaving loom, and with that I wove a scarf, a headband and a purse. However, when I took Home Economics in first year in school, I was given the task of making a collage while the other girls did their cross stitching and used the sewing machines. The experience scarred me to the extent that I can’t bring myself to make a collage with Ali.
  • I remember getting brochures in school about really cool summer camps that included activities such as skating, bungee jumping, Qazar, water fights, football, basketball and hurling. My parents would look at each other and my mother would say, in a suspiciously bright voice, ‘How would you like to go to a better summer camp, where you can even sleep over?’ This place was Clochan House, a respite centre for people with disabilities just like me. They couldn’t go skateboarding either, but once I overlooked the fact that I hadn’t gotten my own way, I enjoyed myself and even nabbed meself a husband! Best camp ever! (bet you’re sorry now, eh dad?)
  • I took guitar lessons in TY much to the amusement of my classmates. At the end of a three month course, I could play E minor. I’m ashamed to say that in my family, at least four of us can play the guitar. I am not one of them.
  • Much to my disappointment and relief, I will never be a slave to fashion. High heels and me = disaster. In an effort to look elegant I wore high –heeled shoes to my school grad. They came off within ten minutes as I fell over for the fiftieth time. I looked pissed, and I desperately wished I had been, but no.
  • I think my mum wet herself the day that I announced that I was going to try and get a weekend job in the Bridge House or something, as a waitress, to supplement my college income. ‘Er, your studies are far more important’, she insisted through her tittering. Hmmph.

There are times when having so many limitations can be a real pain in the ass, and it does get me down sometimes, especially when Alison asks me to skip, climb and run after her. But then I think, no, I’m not exactly like every other mum in the playground, why should I be? Time to focus on the positive:

        • I have a handsome husband and beautiful daughter
        • I can work, write and spend time with my family (although I’m still working on the balance)
        • I have a degree from Trinity College, where I learned to live independently
        • I love, and am grateful for, my life at the moment.

Don’t get me wrong, the way I am wired means that I’ll probably always be pushing the boundaries, trying to achieve the most unrealistic goals. If I achieve them, I will be delighted, and if I don’t, I’ll come to terms with that too.

But I won’t know until I try.