Monthly Archives: October 2017

Unsocial Media?

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I’m in writing mode now. But ten minutes ago I was flitting mindlessly around Twitter and Facebook, seeing what was happening in the world. You don’t need to tell me this is a waste of my time, of course I know that. By ‘waste of my time’ I naturally mean ‘waste of my writing time.’

A few months ago, I felt so guilty about the length of time I was spending on social media that I deleted both my Twitter and Facebook accounts. I think this lasted all of one day before I panicked and reinstated them. It’s sort of disturbing to know that ‘do you want to permanently delete your account?’ doesn’t actually mean what you’d think it would, as even after choosing this option your account can be restored.

It’s depressing how social media owns us. We all know how sharing pictures of our kids and our houses and our beautiful pets can make us look needy, narcissistic and fake. Who hasn’t been scrolling through their Facebook or Twitter feed at one stage or another and thought, ‘oh my God, this is a pile of rubbish, why am I still on social media?’

We’re told that social media is ruining the ability of people to make real-life friendships and conversations. Well, I’m sorry, but social media is not the sole scapegoat for people being lonely. I’m sure I’m not the only one who doesn’t live in the same town as any of my family members. For many of us, it’s not a case of going up the road for a quiet natter with family or friends (I have one close friend living in town at the moment). People are out living their own lives in every corner of the world, and it’s social media that is keeping them all connected.

Social media has helped me in three areas of my life: as a mother, a writer and a person with a disability. When Ali was born, my friend added me to some wonderful parenting groups where clueless first time parents like me were asking questions about parenthood. Often I don’t comment: instead I ‘lurk’, nodding silently in agreement with other mums. In fact it was another mother’s open admission on Facebook that she was struggling with PND that ultimately motivated me to get the help I needed, take care of myself and write a blog about it. Knowing that I was not alone really helped. I also joined a reflux survivors’ page when Ali had reflux and seeing other parents come out the other side really gave me hope during this difficult time.

As a writer, being present on social media can be both rewarding and tiring. I’m still trying to find the balance between suave self-promotion and being interesting without just being plain annoying. In terms of rounding up an audience for my blog, I’ve found Twitter to be especially useful. Like most Twitter users, I haven’t a  clue who half of my followers are, but some have proven to be really useful contacts. For example I met a lady on Twitter who helped me find some secondary reading for writing my novel. I met another lady who’s teaching me about chocolate and making material accessible for the visually impaired.

Finally, social media is opening up the world for so many people with disabilities right now. Whereas before peer support mainly involved occasional meetings or coffee mornings, people with disabilities can now communicate with each other on a daily basis. This is so important given that there are nearly three thousand people with disabilities living in inappropriate nursing homes or hospitals and thousands more, be it through lack of transport or Personal Assistance, trapped in their own homes. Social media is becoming an increasingly popular tool for PWD challenging injustice in their everyday lives, and as a result, our stories are being highlighted by mainstream sources including local and national newspapers. People who were once voiceless are now becoming very vocal, all from the comfort of their own homes. The inability to get out does not necessarily mean the inability to participate, to count, and to matter.

So although I should probably curtail my time skulking around on Facebook and Twitter, I’m not ashamed to acknowledge that social media has helped me become a better mother, a more conscientious writer and a fiercer activist. I’m so grateful to be part of a virtual community that accepts and helps me. It certainly doesn’t beat face-to-face contact but it does make the world that little bit more accessible. Not just for people with disabilities, but for everyone.

 

Ps. If you enjoyed this blog, ‘like’ and ‘share’. Joking!

Pps. Well, half-joking anyway

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The Crumbs from the Table

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Hey guys, guess what today’s ranty blog is going to be about? *fanfare* You’ve guessed it – the farce otherwise known as Budget 2018, which was released earlier today (10 October). Though you know what, I’m not actually surprised at how little it helps ‘our people’ (aka us crip-folk) and you know why?

Because the UNCRPD (United Nations Convention on the Rights of People With Disabilities) hasn’t been ratified yet! What’s that got to do with the price of eggs, you may well ask (or not, maybe you don’t give a shite). Well, I’ll tell you, shall I? As long as the Convention remains unratified, disabled people are at the very least being denied the rhetoric to challenge the discrimination and sometimes the cruel and inhumane torture doled out to them on a daily basis!

Our government continually makes excuses for the delay in the ratification of this UN Convention, allowing them to blatantly disregard the human rights violations that are occurring in the meantime. For example, Article 19 of the UNCRPD states:

 States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

If the Convention was ratified, then the government would have to justify why there are currently over one thousand young people with disabilities and an estimated three thousand disabled people in total inappropriately placed in nursing homes. It would have to explain why funding for Personal Assistance is allocated to the HSE who in recent years, owing to financial constraints, have been awarding the service on the basis of absolute need – in their eyes, accessing work/college, personal care and physio. Gone are the days where a person with a disability could be trusted to be accountable for their own decisions. Instead, a lack of funding has resulted in service users (‘Leaders’) having to justify and account for every minute of their P.A. service. Personal Care trumps all. As long as we’re up and dressed, it doesn’t seem to matter whether or not we can actually go anywhere! This is how people become institutionalised in their own homes, a common problem that is rarely discussed.

There has been no additional funding in this area since 2008, but there has been increased demand for services. As a result, many people are on waiting lists for P.A. hours, some of whom are stuck in hospitals and nursing homes in the meantime. Some of these people are well able to contribute to society, so why aren’t we letting them?

Under Article 15, which states ‘Freedom from torture or cruel, inhuman or degrading treatment or punishment’, Ireland has a lot to answer for. We’d all be naïve if we thought that Aras Attracta was the only serious incidence of cruelty toward disabled people in congregated settings. HIQA, though useful, is very clinical in its approach and the danger is that it may be merely ‘a tick-box exercise’ which doesn’t actually measure the happiness of residents. I have yet to see a HIQA report that recommends that some residents (or most, but not all – I appreciate that) would greater benefit from being accommodated to live in the wider community with support.

If HIQA decide in the future to regulate community services, then they must do so with Independent Living and its components of independence, empowerment, choice, options and rights as the core of their policies. Our government needs to realise that the ratification of the UNCRPD (whatever this entails) must shift the disability narrative from one of charity to  one of empowerment. We don’t want to have to be grateful for government handouts, but we are never going to be able to contribute to society in a meaningful way unless we’re enabled to do so. And this must happen through investments in the services we choose.

We want rights, not charity.

We want all the cuts made to disability services reversed, as well as additional investments. Because after today’s budget, people with disabilities are no better off than they were ten  years ago.

I’m sorry, but the crumbs from the table just aren’t good enough anymore.

 

 

 

Happy World CP Day!!

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*Some websites are telling me this is the 5th October every year, others are saying 6th. I will be observing it on both days by eating copious amounts of chocolate*

Hey everyone, happy World Cerebral Palsy Day!

I wasn’t going to bother writing a blog in honour of this special day because I don’t want to get too repetitive (okay I know that ship has sailed but I did write a blog on it last year), but when I read last year’s (god-awful) blog entry I realised that I’d written it on the assumption that all of you actually knew what Cerebral Palsy was. For those of you who don’t know me, Cerebral Palsy is what puts the ‘wobbly’ into wobbly-yummy-mummy. There’s a wealth of information about the disability around the interweb, but why would you bother with that when I, an actual person with CP (and therefore an expert) can teach you everything you need to know?

So…

  • Cerebral (brain) Palsy (paralysis) is caused by a lack of oxygen or a head trauma either shortly before, during or shortly after birth. Which is a bit of a pain when you think about it, because your brain controls everything your body does. So, for example, when your non-CP brain says ‘Pick up that cup,’ your hand grabs the handle and voila. Whereas a CPer could do anything from grabbing the cup to going into spasm and hurling it across the table. It’s this unpredictability that makes life that little bit more interesting.
  • It’s estimated that people with Cerebral Palsy use at least twice the amount of energy ‘normies’ use basic things (the perfect excuse, in my opinion, to laze around with chocolate in the evenings). As I’m typing this right now, my involuntary movements are in overdrive: my head is bobbing, my legs are moving – neither body part are needed for the act of typing.
  • Also, every person with CP uses their body in different ways. Unfortunately this can accelerate wear and tear, but there’s sweet FA we can do about it. For example, I’m unsteady on my feet but I find that if I do things on my knees I can do a better job at things like hoovering and folding laundry. I often get swollen knees, something I never got in my teens (I also did my homework at my bed, on my knees). I also fall a lot on my knees. My poor auld knees. I also know people who type with their tongues, elbows and feet a la Christy Brown. We are resourceful folk.
  • Cerebral Palsy is characterised by the presence of many things, including unsteady gait, speech impairment, involuntary movements, poor coordination and so on. But in my experience, it doesn’t affect any two people in the exact same way. I’ve yet to meet a fellow CPer whose impairment is an exact mirror image of mine. A few people may have moderate to severe intellectual impairments, but this is not always the case. A speech impairment is not an indicator of poor intelligence.
  • One thing that I’ve learned about CP that you won’t find on Wikipedia is that some of us (as in myself and at least five other CPers I know) are prone to bouts of uncontrollable giggling. Which on the whole is hilarious but also completely involuntary. If I had been any other student in my sixth year English class I would’ve been suspended for my ‘disruptive’ behaviour in class. My CP friend had similar experiences in college where her giggling disrupted whole lectures and frequently set off waves of giggling in lectures.
  • The following point is not only related to people with Cerebral Palsy but to all people with disabilities: cinematic depictions of people with CP should be portrayed by disabled actors and not Hollywood names ‘cripping up’ for roles. I mean, would you find it acceptable for somebody to paint themselves a lovely brown colour for a role? No, you’d call it racist, and rightly so! I bring up this point after meeting an actor with CP a couple of weeks ago who, for obvious reasons, only gets called to fill the roles of disabled characters. It seems that ‘cripping up’ for roles has now become normalised (look at Me Before You: a disabled character has the lead role, but is played by a non-disabled actor.) It’s not as if there’s a plethora of work out there for disabled actors, so let us represent ‘our people’ when we can!
  • Finally, people with CP are just that – people. Some are nice, some are assholes. Most importantly, we are definitely not inspirational purely in the act of having CP. In fact, comedienne and writer Francesca Martinez (who, if you look her up on YouTube, will tell you even more interesting gaffes about having CP) renounces the label of ‘inspirational’ by saying she spends eleven hours a day in bed (lucky sod). We are not all the same, and don’t they say that variety is the spice of life?!

Phew, that’s a reasonably long blog. I’m exhausted from my involuntary workout. Off to eat chocolate. For energy purposes, of course.