The Crumbs from the Table

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.

 

 

 

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National Carer’s Week 12-18 June

This week  (12-18 June) marks National Carer’s Week, which is an initiative designed to give recognition to the estimated 180,000 unpaid carers across the country. These people are hailed – and rightly so – as heroic. Many carers have given up dreams of marriage, having a career, maybe juggling caring with raising a family. It’s noble and admirable, yet I find something deeply troubling about the narrative surrounding carers in Ireland.

I probably don’t have any right to be writing this blog.  I’m lucky insofar as my care plan doesn’t currently involve intimate personal care, just help with things like tying up hair, doing buttons etc. I mentioned before that one of the things I value most is my independence. That, and not being labelled a burden.

As a mother of one little girl, I’m ready to plop myself on the couch by eight o’clock in the evening. I love being a mother more than I ever thought I could, but sometimes it can be exhausting – answering incessant questions, doing role plays, going to the park. And this is without having to take care of toileting needs, inserting feeding tubes or anything like that. BUT I would hate to be in that dangerous position where I would view my own daughter more as an object of care than her own little person.

Traditionally, when a disabled person has a child, it is often assumed that the child will take on the role of a carer. Well, let me tell you – Alison has her little chores for which she gets rewarded, but she is not a carer. I have an excellent personal assistant service (not carers) that enables me to be the best mother I can be. I myself direct the Personal Assistant in what I need, and doing so allows me the energy during the day to write pointless blogs like these and spend some quality time with my daughter in the evening. And it allows my husband to enjoy an existence separate from me. I don’t have to worry about him harbouring resentment for me, because I’m not completely dependent on him. We are very much an average husband and wife.

It is harmful to reduce the identity of a person who has ‘high-dependency needs’ to an object of care. Everyone has the right to personal autonomy, to choose how and where they spend their day and with who. I know if I had ‘high dependency needs’ I wouldn’t want my parents, my husband or my child caring for me. I’d want someone fresh, not so emotionally involved, someone who could appreciate my individuality as well as know how to meet my needs. These sort of people are hard to come by. A FETAC Level 5 in Healthcare Support is useful from a practical point of view, but there is a danger that service provision is becoming overmedicalised, with less emphasis on finding out what the person actually wants and more about ticking boxes and providing a basic care plan and often wholly inadequate service.

If this government really cared about the needs of disabled people and their carers, then they wouldn’t dare contemplate cutting the Personal Assistant Hours or the hard-to-come-by Respite Grant. Instead of having a tokenistic approach to unpaid carers by dedicating a measly week to them, the government could alleviate the workload of carers by looking after the needs of the disabled person themselves and, as the late Martin Naughton suggested, allocating them funds so that they (and their families if appropriate) can choose the services they need. Martin called this putting disabled people ‘in the driving seat of their own lives’.

I’ve spoken to people over the last number of years who regard the possibility of acquiring a disability or impairment as ‘a fate worse than death’ and who, like me, would hate to become a burden on their families. But this attitude is a dangerous one. Centuries of conditioning has led us to believe that it’s our impairment that is the problem, and it’s not. It’s the manner in which Irish society and our healthcare system are constructed to make disabled people feel like they’re somehow ‘wrong’, problematic, inconvenient. We are now the only EU member state that hasn’t ratified the UNCRPD. In the UK, disabled people who cannot work are labelled ‘scroungers’ and I can see that attitude creeping in here now. I now believe that positive change is not progressive, and can be undone more quickly than it happened in the first place.

To all of you unpaid carers across the country: I salute you, and keep up the good work. You deserve recognition, not only this week, but every single day. But can I ask a favour? Please join us in challenging the system. Please don’t resent your loved ones for the care they need. They are not at fault. All of our lives would be so much easier if the dignity of disabled people and their carers were upheld through the provision of basic human rights.

 

I’m only human, after all…

TMI alert, people: I’m currently in the middle of my, shall we say, ’emotional’ time of the month. And as every woman out there knows, during this period (pun intended) we can become irrationally angry or overwhelmingly emotional for no apparent reason (but hey, isn’t that what chocolate is made for?) Anyway, there is a point to this, I promise. Stay with me.

My husband, my daughter and I were travelling in the car on Monday when ‘Human’ by Rag’n’Bone Man came on the radio. Of course, being an emotionally unstable female, I was instantly in floods of tears, much to the surprise of my husband who nearly crashed his car in shock.

‘What’s wrong with you?’ he blurted out, while I wiped my tears. I shook my head.

‘It’s crazy time again,’ I joked as I tried to compose myself. But there was more to it than that, and he knew it too. And I didn’t have the words to explain. I do now, though.

The energy of the song and the repetitive line ‘I’m only human after all’ brings to mind what’s been going on in the media over the last few months with the remains found in the septic tank at the Mother and Baby Home in Tuam. Like many of us I feel sick as I think about all those women, both young and old, who gave birth to their babies and never knew what became of them. It’s likely that some, if not most of these pregnancies were unplanned, and instead of being supported these women were disgraced, disowned by their families, and left in the hands of the nuns. You’ve read some of the stories, I’m sure. It’s truly harrowing stuff, and it’s been playing on my mind for the last two months.

How can we claim to be compassionate when we don’t even allow people to be human?

I live in a country where my rights as a person with a disability are not protected. This is because something called the United Nations Convention on the Rights of People with Disabilities (or the UNCRPD) hasn’t been ratified by the Irish government. In theory, this Convention guarantees that no person with a disability should be forced to live in an institutional setting against their will. It guarantees access to Personal Assistance as a right, not a privilege. Those who have ratified the Convention (and Ireland is the only EU country that hasn’t) are answerable to the UN if human rights are breached. With constant threats of cuts to PA hours and people with disabilities having to give twenty four hours to use public transport, Ireland would certainly have a lot to answer for.

What upsets me the most is when you have a disability, you’re not allowed to make mistakes. Everyone makes mistakes, takes wrong turns and yet, when you have a disability you’re either expected to be some kind of Superwoman, or an utter failure. If you make a mistake, well, obviously you’re not cut out for education or parenthood or whatever it was you were trying to do. People judge each other; I’m no different. But this pressure to live up to an arbitrary standard, set by people who may have no experience of disability, is overwhelming. As my loyal followers are aware by now, I came up against intense pressure to prove myself when I had my baby girl. And as you may be aware, I never sought help for my postnatal depression which lasted two and a half years because I was afraid that, combined with my disability, it would give the HSE the authority to take my daughter.

And my overwhelmed, hormonal, PMSing self thinks this is truly unfair. I feel frustrated and tired with it all, and I only wish there was more I could do to challenge this injustice, to stop history from repeating itself. Sometimes I wonder if life would be easier if I wasn’t so sensitive, so stubborn, if I just didn’t care. But the truth is, I do care. A lot. Too much.

But there isn’t much I can do at  eleven at night, and I’m pretty stuffed from that Easter Egg I’ve just polished off…

Hey, don’t judge me, I’m PMSing.

…and I’m only human, after all…

I hate to be a burden, but…

Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.

Meaningless rant on a Friday night

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.