What do we want? A PA service! When do we want it? Now!

Ugh. I’ve been thinking lately about how many times I’ve been torn between pursuing other journalism opportunities and how often I end up just posting here instead. This blog is too accessible, too easy. Perhaps I should delete it, the culmination of five years’ solid work, publish it in book form, and charge extortionate amounts of money to people who want to read it. I give myself away, far too easily as a writer.

On the other hand – and I can’t believe I’m saying this – some things are more important than money. And there are some things money can’t buy. Freedom of choice, equal rights – those kind of things.

On Tuesday, 19 November 2019, an important motion is being brought to the Dáil. The motion proposes the legislation of a P.A. service. It’s safe to say that the majority of disabled people who currently use the service understand the rationale behind legislation. For too long, there has been a level of misperception that disabled people, in the words of Martin Naughton, are “to be cared for rather than cared about.” Since the onset of the recession, a culture has been created between those who care about the Independent Living Philosophy whereby it is often perceived to be “safer” to stay quiet and accept things, especially if people are afraid of losing the little provision they have.

Historically, independent living has never been approached as a “rights-based” issue in Ireland. The establishment of the Center for Independent Living in 1992 marked a monumental shift away from the charity model of disability to a rights-based approach. It celebrated the individuality of disabled people and their diverse lifestyle choices. However, as the demand for this revolutionary service grew, so too did the restrictions of it.

The HSE funds the Personal Assistant Service at present. However, significant investment is badly needed to enable people to live full, meaningful lives. Pauline Conroy, in her book entitled A Bit Different? Disability in Ireland notes that in 2017, forty-five percent of Leaders (service users) were only receiving a mere 45 minutes a day on average of Personal Assistance, largely for Personal Care. Many activists have been crying out for years for the need to create a fund exclusively for personal assistance. In our minds, “carers” tend to follow the “medical model”; disabled people are viewed either as “problematic” or as passive recipients of services, incapable of having their own voice or even of making the most basic decisions about their own lives. Whereas in the true definition of the Personal Assistant Service, the Leader is placed, as Martin Naughton once said, in the “driving seat” of their own lives.

The debate coming up next Tuesday is an important one. It won’t lead to all of us waking up on Wednesday morning in a world that has changed overnight, where we will all be able to access the level of assistance we need to live fully independently. At the very least, however, we will be creating a conversation about the need to approach Personal Assistance as a right, not as a lottery depending on your address. It’s about urging people to consider the importance of free will, of independence and choice.

If you would like to create awareness of independent living, or if you would like your local representative to debate this motion in the Dáil next Tuesday, please email me at sarahfitzgerald1984@gmail.com and I can send you an email template.

Finally, if I’ve kept your attention this far, you might be interested in this short story which details the reality of dependency and uncertainty for disabled people in Ireland.

 

(For more info on the #PASNow campaign, email me as above or visit Independent Living Movement Ireland’s website, ilmi.ie)

I know what I want – and I want it now!

Today is a mucky, awful day. It’s been leaking all morning, and probably will be for the rest of the week, according to forecasts. Nonetheless, I’ve been out of the house. My Personal Assistant and I have already been to the gym today, which not only helps me keep fit but also ensures that a hermit writer such as my good self does not become institutionalised within my four walls. Such a normal, mundane thing, isn’t it, going to the gym? Some dedicated people (read nutcases) even make time to go at six or seven in the morning before work. Often, if I go slightly later in the day (early afternoon) I meet other mums sweating it out before the kids barge in from school.

How wonderful it is to have that choice – to come and go as you please. To go to the gym, or to sit in a café salivating at a large chocolate éclair. To go to bed early and read, or to stay up until 4am watching the latest series on Netflix. The great thing about life is that it is full of choices. We make choices every day – mundane ones like what to have for dinner, and exciting ones like going travelling in Australia(!) – and many of us never give them a second thought.  And hell, why would we? Life is for living, right? We’re going to be dead long enough, aren’t we?

I have not been feeling too good in myself lately (hence all the extra exercise – it boosts my mood) because I know what I want. I want to be a writer, and even though I’ve spent hours this week applying for other jobs, I know that writing is the only profession that makes me feel whole, competent and useful. I love it because it’s a skill that can constantly be worked on, improved upon and polished. However it is so hard to focus solely on writing when I know that disabled people are collectively still fighting for the right to do what they want. And often these things do not include something as ambitious as going to Australia. I’ve heard people comment on how nice it would be to go for coffee once a week with friends, maybe go away for a night or two, breathe in new surroundings. We as a family often go for day trips, a drive somewhere, a change of scenery. It’s a must for your mental health!

During times when I myself feel low and inadequate, my mind wanders to those who don’t even choose what times they get out of bed, who can’t spontaneously decide to have a shower that morning, let alone leave the house to do their own shopping or socialise. If this was my reality, I can only imagine that my thoughts would be very dark indeed. To me, this isn’t living – it’s merely existing. And how many people in Ireland are  merely existing?

I heard someone recently say that they were grateful for the services they receive. And hey, there’s nothing wrong with a bit of gratitude, eh? After all, as a parent I have instilled in my daughter that we should always be grateful for what we have, that we should always be polite and say please and thank you. I am guilty of being grateful. I am especially grateful to my Personal Assistants for the work they do in helping me be independent. In fact I am so grateful that if my service were to be cut in the morning, that I would probably say something like “well there are people out there who need it more than I do, and sure can’t I manage, and I can still get taxis and buses and stuff”. Firstly, if I didn’t have a Personal Assistant, I guarantee that I would not have the energy to write rambling blogs such as this one. Secondly, my attitude of comparing my own needs to the needs of others perpetuates ableism and creates a hierarchy of disability. Instead of using the PA Service to achieve equality, it seems that those who “need” it more, such as those who need help with personal care, are prioritised. And logically, there is nothing wrong with this. However, this perception, exacerbated by the constant talk of lack of finances since 2008, has led disabled people themselves to lower their own expectations. And talking out is dangerous because if you are perceived to be a bit of an upstart, you risk having whatever little you have being removed from you.

This is the reality within a country that does not yet recognise Personal Assistance as a right. The right to a Personal Assistant so that a disabled person can live in whatever way they choose is currently not recognised in Irish law. Now that we have ratified this famous UN Convention on the Rights of People with Disabilities (UNCRPD) that I have harped on about more than once, the absence of legislation protecting our right to access Personal Assistance is no longer acceptable. Oh, and just to clarify, home help and Personal Assistance are separate services according to Article 19, so having access to one does not justify the denial of access to the other. In case you don’t believe me, I quote directly: “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.” (UNCRPD, emphasis mine).

A year ago, I had the absolute honour of being co-opted onto the board of an organisation called Center for Independent Living Carmichael House. Last September, we rebranded as Independent Living Movement Ireland  (ILMI). Today, ILMI launched a booklet entitled “Achieving a Right to Personal Assistance in Ireland” in collaboration with the forward-thinking Centre of Disability Law and Policy in NUI Galway, as part of their Disability Legal Information Clinic. It is a positive step towards creating an Ireland that eradicates the notion of disabled person as a medical “patient” and moves instead towards recognising Personal Assistance as a social issue and a basic human right. It fills me with hope that perceptions will change, sooner rather than later.

I want my right to Independent Living to be recognised. Before I die would be brilliant. Then I can focus on living my best life, whatever that may be.

For more information on the vital work of ILMI, or to join our  #PASNow campaign, please visit http://www.ilmi.ie.