Disability Rights are Human Rights

So, it’s happened, as many predicted it would – a general election has been called for the 8thFebruary, 2020. What an underhanded move, don’t you think? To call an election due to take place within three weeks? The short timeframe leaves us all scrambling to make our cases, to highlight pressing issues to election candidates in the hope that somehow, our electorates will improve our quality of life.

 

However, there is something that’s been bothering me, something that I need to clarify once and for all with you, dear reader. You may have noticed, that as a writer, I am in danger of pigeon-holing myself; after all, the name of this blog is “wobbly yummy mummy”. The keywords I use most, according to the word map located to the right of this blog are “disability”, “independent living” and “equality”. When I established this blog six years ago, I intended it to become a platform for a diverse range of subjects, not just disability activism. Yet, I don’t think of it as time wasted, nor do I worry whether it will impact on my future writing career. I’m proud of this blog, and what it represents. Above all, my writing serves as a reminder to all who read it that –

 

Disability Rights Are Human Rights

 

This reminder comes as the nation ramps up to challenge those who think they hold the solution to the many problems facing people in this country right now. Often, when organisations purporting to represent the needs of disabled people deliver their manifestoes to the vote-seeking candidates, they are told by the election hopefuls that they understand the importance of services for disabled people, that they want to protect those who are “vulnerable” within our society. That said, few candidates understand that it’s not our impairments that make us vulnerable, but rather the lack of access, services and respect that we as disabled people face on a daily basis.

The reality is that disabled people’s lives are affected in deeper ways by the government’s unwillingness to treat us as equals. It has been recently reported that Ireland is the worst country in Europe to have an impairment or disability, and this doesn’t surprise me in the slightest. One of the biggest challenges is that disabled people are still treated as “patients”, people who, in the words of prominent activist, the late Martin Naughton “are to be cared for rather than cared about.” We have to ask ourselves whether things can ever drastically improve for disabled people in Ireland as long as the HSE is the principal funder of disability services. Does this mean that disability will always be seen as a medical issue rather than a form of social oppression, like racism? Which, of course, is exactly what it is.

Progress

It would be amiss of me to imply that there have been no glimmers of hope in the last three years. On 7 March, 2018, Ireland finally ratified the United Nations Convention on the Rights of People with Disabilities. On November 19, 2019, a motion was brought to the Seanad by Donegal TD Thomas Pringle in collaboration with NUI Galway and Independent Living Movement Ireland (ILMI) to legislate for a Personal Assistant Service. This has been a monumental step not only towards securing a service for disabled people often described as “my arms and my legs” but bringing about a change in the overall narrative of disability. It was the first time in a long time that I observed the language that was used being focused on a rights-based approach rather than the usual “vulnerable” narrative. And although the safety of the future of personal assistant services is still not guaranteed, I feel optimistic about the future of disabled people right now.

But – and there’s always a but – we cannot and should not rely on elected representatives to speak on our behalf. Historically, disabled people have had to suffer the humiliation of not having their voices heard. This starts on a seemingly innocuous level, in our everyday lives, when our family members or personal assistants are spoken to instead of us being spoken to directly. This is referred to as the “does he take sugar” syndrome, and evolves into a warped reality where the views of disabled people are only taken seriously when they are endorsed by a “disability organisation”. I know that my little blog does not have the reach that I would like it to have, and while I would never claim to be the expert on disability issues, I know how exclusion, lack of access and discrimination, both direct and indirect, impacts on my everyday life.

My point is – we need to trust ourselves. We need to truly believe that we as disabled people, and we alone, know what’s best for us. If we don’t believe this – and it’s shocking how many disabled people doubt themselves because of internalised oppression – then the big decisions will be made for us. Where we live, who assists us, our dreams and the nitty-gritty of our own lives will never be in our hands.

So to reiterate: The issues facing the population as a whole also face disabled people.

 For example, disabled people are aversely affected by the housing crisis. Many adult disabled people, just like non-disabled people, are still stuck living at home with their parents. Others are living in hospitals or nursing homes for the elderly because there is no accessible housing available or because they don’t have access to Personal Assistant Services. There are no figures available to show how many of the 10,000 people who are currently homeless are disabled people, but logically people with a varied range of impairments would be logistically unable to access certain hostels and emergency accommodation.

The rising costs of living means that disabled people in Ireland (like many others) are forced to eat nutritionally deficient food such as breakfast cereal, pasta or packaged soup, because they must save money for heating and other bills, or because they lack the assistance needed to prepare a more substantial meal. And the free travel pass, which was intended to reduce isolation among disabled people from their communities, is useless when buses are inaccessible and both urban and rural train stations are unmanned.

Should I have the chance to meet any of the election hopefuls face-to-face, I shall be reminding them that disabled people are demanding their human rights, that the government urgently needs to invest in all of our lives, that we should have access to the same services and opportunities as the “non-disabled” population and, above all, that we have been very patient. We have watched the deterioration of vital services and yet the outcry has been barely audible. We have tolerated cutbacks, the denial of basic rights, the compartmentalisation of our needs into “special needs” for far too long.

We refuse to do it any longer.

We refuse to be spoken for any longer.

Henceforth, we will be collectively using our voices and demanding our human rights.

My Dystopian Life

Guys, this evening as I sit here on my laptop, I’m starting to seriously doubt myself. When I started writing a novel two years ago now, I didn’t have a clue what I was doing or how to plan it out. And man – now it’s a mess. I can still see merit in the story, and I am a hundred percent sure what I wanted to achieve. But another story has beckoned over the last number of months, and it’s a dark, dystopian fiction (but kind of similar to the one I’m writing now in many ways).

In my fourth year of college I was introduced to the world of dystopian fiction by a professor who urged us to  read the novels and afterwards to question everything, to draw similarities between the fictional work and real life. After all, dystopian novels draw from our history. Look at 1984, for example. The use of propaganda (I.e. Hitler) to brainwash the public into trusting the ‘government’, the deliberate rewriting of history to suit a warped political agenda, the destruction of language so that the ‘proles’ have no means of expressing anger towards the Big Brother regime (any of this ringing a bell? Tuam Babies? Garda Corruption?) These are all ways in which people are worn down and forced into a narrative they do not want to partake in. And of course, rebellious Winston is forced into Room 101, where he is tortured into submission when faced with his darkest fear: rats.

Watching the television adaptation of Margaret Atwood’s dystopian novel The Handmaid’s Tale has reawakened my fascination with the dystopian form, and it’s interesting to watch my husband’s outraged reaction to the show every Sunday and to point out to him, just as we did in Apocalypse Class ten years ago, the similarities between Gilead and the world we live in now. Of course, we don’t live in the nightmarish worlds of these two novels. But I definitely feel trapped in some kind of dystopian nightmare.

I live in a country that is deliberately denying me my human rights, in a world where I constantly have to prove myself in order to have any kind of credibility. A world in which disability is seen as a medical problem rather than a social one. A world where my voice and the voice of many disabled people are dismissed as trivial or unimportant. The problem is that speaking openly and honestly about disability isn’t seen as ‘cool’ or interesting unless your views are endorsed by some random celebrity or politician, who has no idea what it’s like to be viewed as an inconvenience by your own government.

I believe in something called the philosophy of Independent Living. It was originally an American concept, its birth coinciding with other major political movements originating in the US in the 1960s. Basically, many people, including disabled people, were sick to death of being discriminated against and denied their basic human rights. And so they fought. They protested. Above all, they made it quite clear that the only real authority on the subject of disability were disabled people themselves.

Fast-forward almost sixty years, and what’s changed? Sure, things have improved. Access has improved. Disabled people even have careers and families now. But don’t be fooled: these things haven’t and still don’t come easy. We still have to fight, fight, fight.

But what’s the alternative to fighting? What would happen if disabled people sat back and said ‘sure what’s the point? What can we do?’ Well, I’ll paint you a picture, shall I?

If we continue to allow organisations to represent us instead of us representing ourselves, sooner or later we won’t be trusted in our own opinions at all. We won’t ever challenge ourselves and we will become complacent, so much so that we won’t even notice our human rights being stripped away, one by one.

If we don’t actively promote the social model of disability and be adamant and unwavering in our belief that it’s the society we live in that’s the problem, we will always be seen as patients to be improved, fixed or cured, and future generations will fail to acknowledge that there’s nothing wrong with us.

Today, across Ireland, so many disabled people in Ireland do not get a say in what time to get out of bed, when to eat dinner or where they live. Many are stuck in hospitals or in their parents’ homes where they have no control over many aspects of their lives. This is not okay. Please don’t shrug your shoulders and say ‘oh well that’s just the way it is at the moment, what can we do?’

Imagine if you had to justify every single little decision in order to be able to do what you wanted.

Imagine having to prove yourself every single day in everything you do, and be expected to do so with a smile.

Imagine having to downplay your abilities, almost to the point of degradation, and having to expose your vulnerabilities before getting the basic help you need to live independently.

This isn’t a dystopian novel. This is Ireland, right now.

And for many, it’s a scarier place than any fictional dystopian world ever created.