Do I Have a Choice?

What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.

 

 

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.

 

 

 

Locked away

For as long as I can remember, I have had an irrational fear of being institutionalised, or more specifically, living in a residential institution or a hospital.

I remember being eight years old, an age where my sense of self-awareness was growing rapidly. I was beginning to sense that I was different from my classmates. They had to tell me that I walked and talked differently, because I’d always assumed that I was no different to them. They didn’t use a typewriter. They played in the yard at lunchtime while I sat watching them. I remember complaining to my parents about it. ‘Count yourself lucky,’ my dad would say, ‘you can do so much more than other people with Cerebral Palsy.’ What the hell is Cerebral Palsy? My mum told me it was a kind of brain damage; that all of the body’s messages come from the brain, and that’s why I did things a little differently to others. That was that.

Then one night, my parents and I watched a documentary on the institutionalisation of people with disabilities during the Second World War and in the 1950s. Horrified does not describe how I felt as I watched how people were locked away by the Nazis, never to be seen again. I heard stories about people who were hidden in their parents’ attics for decades, and I thought: I am lucky. I am lucky.

That year, I would stay in Clochan House, a local respite centre, for the first time. My parents told me it was a sleepover summer camp, and indeed it was lots of fun. We did art, went on trips shopping and to the cinema, and had singsongs in the evenings. Don’t get me wrong, I have very fond memories of my time there, but the first time I stayed there I was convinced I was going to be left there, even though my mother went to great pains to tell me this wasn’t the case. That week, I learned to use a tricycle, which would be my main mode of transport for many years. It gave me independence, liberated me. I would later cycle to school and into town on a trike. I loved freedom. I lived a pretty bog-standard life. I did my Junior and Leaving Cert, went to Uni, got a degree and started working. Nothing remarkable there.

Unfortunately, not everyone agreed. In my school, I became a role model for people with disabilities and got told that I was great. I decided to compete for a place in Trinity, but knew I’d have to work hard, to the point where I made myself sick. ‘Remember that you can only do your best,’ teachers would say, their voiced tinged with concern. ‘Like it or not, you do have a disability so you will face challenges no other student would face.’ I refused to take my eye off the ball, afraid that my future would be full of endless computer courses and day centres. I have nothing against either, but that’s what you’re automatically supposed to do, as a person with a disability. You’re supposed to partake in a pre-formulated narrative. And if you do manage to fight the system and get a degree and a full-time job, then you’re great! Absolutely fantastic altogether! A real example of triumph over adversity! A pre-formulated narrative in itself.

I often think about what it must be like to live in an institution. According to the latest figures, 1,000 young people are living in residential institutions and hospitals. This is outrageous in 2015. Cuts to the adaptation grants, household benefits and Personal Assistant Services have all contributed to this problem. But institutionalisation is not just about your living arrangements. In my view, institutionalisation is spreading into the wider community. It manifests itself when business premises are not accessible for wheelchair using clients. Hate crime is also on the rise, that is, people with disabilities (including myself) being attacked because they are perceived as being vulnerable and ‘easy targets’. In my case, being attacked forced me to leave an affordable council house in Portlaoise and move back into the private rented sector. I felt I had to move back to my home town in order to have emergency contacts in case something happened to me.

I wonder how many more people out there feel held to ransom by circumstances beyond their control.

I wonder how many people are trapped within the four walls of their own homes, day in, day out, because they have to use their Personal Assistant hours for Personal Care or household duties. I wonder how many don’t see anyone else from one day to the next.

I wonder how many people, despite being in their homes, still don’t control what time they get up and go to bed at, or who is going to help them with these tasks.

When I had Alison, I had to start fighting before she was born. Fighting for the help I’d need to care for her. Fighting against the misconceptions of my parenting abilities as a mother with a disability. But most difficult of all was fighting against the negativity that I myself had internalised over the years, mirrored from a society that want to define me, keep me in my place. What if you drop her? the voice would say. What if you can’t look after her properly? What if she resents you for having her? What good can someone like you be to her?

Alison has recently started to ask ‘Why?’ about everything. ‘Why does it rain?’ ‘Why can’t we eat chocolate for dinner?’ I never want her to stop asking why things are the way they are, and as people with disabilities, we should never stop questioning things either. Yes, having to be continually vocal about your rights is exhausting. Yes, sometimes it feels as though the Disability Rights Movement is going around in circles. But if we stop challenging injustice, then not only will we be institutionalised in our own homes, but also in our minds and in our way of thinking.

And this kind of institutionalisation is the scariest and most debilitating of all.