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It was October 13, 2016. Martin Naughton had just died, and the entire disability community was in mourning. Martin’s death was at a time when I had made a monumental decision, for the thousandth time. I was ready to kiss the world of disability activism goodbye and become a full-time freelance writer. I had spent too long caring about the degeneration of the philosophy of independent living. I had blogged about it, spoken about it and still I felt empty inside, as if the wonderful, magical world of Independent Living only existed in fairy tales.
A week later, I received an email from the wonderful Susan O’Brien in Carmichael House Centre for Independent Living (or Independent Living Movement Ireland as it is now known) asking me if I would be interested, along with other activists, in organising an event to pay tribute to Martin, who was considered to be the Irish Father of the Independent Living Movement. I accepted Sue’s kind invitation, and a week later found myself sitting like an imposter among some of the greatest activists in Ireland: Dermot Hayes, Ann Marie Flanagan, Mick Nestor and the legendary Shelly Gaynor (Shelly had been to the forefront of many protests against cutbacks to Personal Assistant Services). There was another man there who seemed oddly familiar: even though I’d never met him before in my life, I felt like I’d known him a long time. His name was John.
As the group discussed plans for the memorial event, John’s enthusiasm struck me and inspired me to volunteer to manage the social media and create a blog for the event. I felt more confident in my own voice and started to open up and share my ideas. In December 2016, I started talking to John over Facebook about how disillusioned I’d become with Independent Living in Ireland and how I felt that things had become overmedicalised.
“We are the experts in our own lives,” he said. “The HSE supports the medical model. They will never understand the true meaning of Independent Living or rights.” I offered the idea that we could educate those within the HSE, but John was having none of it. Over the following weeks we fought, we clashed, we agreed on some points. John said that it was important to have those conversations, to make things clearer in my own head.
At this point, there was talk of me joining the board of CIL Carmichael House, in early 2017. I was having serious doubts about it and John, who was concerned about me, asked me why.
“John, I’m not experienced enough to go onto any board, let alone onto a board of an organisation I’ve respected for years. Sure, I can talk the talk but I haven’t done anything tangibly constructive for the movement the way the others have. I don’t know what I’m doing.”
John wrote back: “Nobody knows what they’re doing, not at first anyway. Martin spent his life taking risks, and look how that paid off! You have such passion. Let that drive you.”
But I still didn’t feel worthy so I shied away from the Board. Determined to give something back, however, I instead threw myself into the memorial event. As a group, we named ourselves “By Us With Us”. In addition to managing the social media for the event, I wrote and consequently performed a dramatic monologue, which was close to the bone as it explored the damage caused by internalised oppression when Alison was born.
The months flew by. Before I knew it, it was May 2017 and I had not seen John since February. Nor had I heard much from him. In August, I was devastated to learn that John had lung cancer. My mum had that too. Generally, the prognosis for lung cancer is not good. Naturally, John pulled away from the organisation of the event. Before this, he had been guiding me in managing the blog and Facebook page. His silence was eerie.
Not wanting to bother John, I asked other friends how he was doing. Apparently he was trying to put a brave face on it but he was terrified. I continued working with By Us With Us and getting to know Shelly. Soon, I would not be able to imagine my life without her as a friend, and she remains a massive part of my life.
Finally, the big event came on 23rd September 2017, and with it came my dramatic debut. It was so raw. The pain was supposed to be that of my character’s, but it was obviously I who was crying on the stage, not “Rachel”. The performed drained me and much to my disappointment, I had no choice but to miss the rest of the event and take it easy. At nine o’clock that evening, my phone pinged: a message from John. All it said was “I heard you were brilliant, well done Sarah”.
That was the last I ever heard from him.
John died on the night of 26th November. My heart ached, and I couldn’t say why. I barely knew the man; realistically I only met him face-to-face a handful of times. I cried when I heard. The thought of his children facing the rest of their lives without their dad, the loss within a disability community that had lost so many people, including Eugene Callan, four days after the memorial event.
For some reason, John’s death angered me. I began to think of all the disabled people I knew, young and old, who were grappling with the same shite that disabled people grappled with thirty years ago. How could there be so little progress between my generation and John’s? As if possessed by some intangible demon, I sat at the keyboard and typed blindly, my own salty tears stinging my eyes. I could hear John saying (though I can’t remember whether he actually said this, or if he implied it), that from the cradle to the grave, all disabled people seem to do is fight.
I didn’t dedicate the poem to John openly at the time. I felt I had no right to. I barely knew the man. Others had a historical connection to him that I didn’t have. So I shared it, but didn’t mention John. Now, I dedicate this poem to John, two years after his passing.
In 2018 I was asked if I would like to join the Board of Independent Living Movement Ireland. Again I said, “Others have more experience than me.” Shelly’s response was the exact same as John’s had been and I felt that he was there, dragging me back to the world of activism which frustrates me and makes my soul sing in equal measure.
As a movement, we have made fantastic progress. Last week saw the passing of a motion in the Seanad that represented independent living as a fundamental human right for disabled people rather than a service that is granted on a whim by the powers that be within the HSE. This was always John’s dream, and now it’s up to all of us to make it a reality – to continue to fight, fight, fight.
Rest in peace friend (and thanks so much for the poetic inspiration – one of my favourite poems yet).
I am sharing this essay to outline why I am so vehemently supporting the #PASNOW campaign.
Discuss the challenges to the realisation of the Independent Living Philosophy in Ireland since the onset of the economic recession.
The philosophy of Independent Living was intended to be the cornerstone of the provision of Personal Assistance Services in Ireland. In its truest form, as noted by Morris (1993), independent living is about recognising that each individual has something to offer and that disabled people have “the right to assert control over their lives” (p21). The philosophy is entrenched in the belief that disabled people should have the same quality of life as their non-disabled peers. Yet, there have always been challenges to the realisation of this philosophy in Ireland, and these have become more apparent since the onset of the economic recession in 2008. Berghs (2014, p272) notes that “in a time of austerity, where government budgets are being cut […] independent living or care in a community cannot be ensured”. Independent Living has enriched the lives of many disabled people in Ireland. Yet its philosophy remains at odds with Irish culture, which has historically favoured a charitable approach to funding disability services. In addition, the Personal Assistance service, considered to be the cornerstone of the philosophy, was almost eradicated in September 2012 and the right to access a Personal Assistant remains unprotected by Irish law. A study conducted by the European Network of Independent Living (ENIL) in 2019 indicated that Irish Personal Assistance Services are not perceived to be underpinned by the independent living philosophy (Mladenov, Pokern & Bulic-Cojocariu, 2019, p13). Additionally, many disabled people are incarcerated in hospitals and institutions in direct violation of their human rights. Of further concern to true “Leaders” or Personal Assistant Service users is the expectation that Leaders should rely on family members for their needs and the consequent strain this can cause to family relationships. In this essay, the ideals of the independent living philosophy will be weighed up against the current reality in Ireland, and it will be demonstrated that Irish culture and the independent living philosophy has always been, and remains, at odds with each other.
Firstly, in examining the challenges in meeting the ideals of the philosophy of independent living, it is important to outline what this philosophy entails. According to Bruce (1999), independent living shifts the perception of the disabled person from being an object of care “to a point where they acquire rights of full participation and equality” (p5). In addition, as Morris (1993) notes, the independent living philosophy involves “acquiring the skills and support necessary for severely impaired people to have freedom to live where and how we choose with full control over our lives” (p20). Traditionally, the Personal Assistant Service has been used as a tool by disabled people in achieving independent living. Personal Assistance dates back to 1970s America, when Ed Roberts and a group of disabled college students, collectively known as “the Rolling Quads” employed Personal Assistants which enabled them to attend university and subsequently gain employment. This led to the establishment of the Center for Independent Living in Berkeley in 1972.
It took twenty years for the philosophy of independent living to travel to Ireland. The European Network of Independent Living (ENIL) confirms that the establishment of the first Irish Center for Independent Living was instigated by disabled people themselves (Mladenov, Pokern & Bulic-Cojocariu, 2019, p13). Martin Naughton, who had spent his childhood in St. Mary’s in Baldoyle, came across the Center for Independent Living when he was travelling in the US during the nineteen-eighties. In an interview with Joanna Marsden, Naughton recalled his time in America and how he saw the potential to bring the philosophy to Ireland:
I began to think of all the people back home, many of whom I had semi-reared in some sense when I was in Baldoyle, who were living in institutions. The temptation to do something became too great and I felt the pull back home. (Marsden, 2010; cited in Conroy, 2018, p227)
The establishment of the Personal Assistant Service in Ireland was also the result of the retaliation of disabled people who were tired of having no control over their own lives. Naughton stated in an Irish Times interview in 2015 that in Ireland, a disabled person had traditionally been perceived as “someone to be cared for rather than cared about” (www.irishtimes.com). Conroy notes that one of the main reasons for the formation of the Irish Independent living movement was a reluctance on the part of disabled people at the time to continue living with resentful family members or in residential institutions. (Conroy, 2018, p229).
However, translating the philosophy of independent living into an Irish context has always proved challenging, especially within a predominantly Catholic culture that perceives disabled people as objects of charity instead of equal citizens deserving of rights (Toolan, 2003, p175). A study entitled Extending the Boundaries was carried out in 2006 to examine the progress of the Independent Living Movement from its introduction to Ireland in the early ‘nineties. Dixon commented that:
While the experience of Independent Living has been broadly accepted as a positive one for disabled people, there is a concern over the uneven spread of this service provision, and a worry that the philosophy of Independent Living, which should underpin service provision, is being diluted. (Dixon, 2006, p17)
This quote suggests that there were challenges to realising the Independent Living Philosophy prior to the onset of economic recession. However, the philosophy has become further diluted since the publication of Extending the Boundaries. Given Ireland’s tendency to treat disabled people as “victims” deserving of charity rather than autonomous individuals in their own right, fundraising initiatives has always been the norm in many disability organisations, including RehabCare and the Irish Wheelchair Association. Toolan notes that “At the same time as disabled rights groups are looking for the enactment of disability rights legislation, charities under a ‘not for profit’ banner are projecting demeaning and dehumanising messaging in order to attract resources for their service” (Toolan, 2003, p174). This conflict between the need for the Center for Independent Living to portray itself as a rights-based organisation and the requirement to secure funding for services came to the fore during recessionary times, with Irish disabled activists reluctant to portray themselves as vulnerable in order to secure funding. However the RehabCare and Central Remedial Clinic scandals, which revealed that charitable donations were being used to inflate salaries, is one reason why sustaining a charitable approach will not work into the future. Morris (1993, p7) states that the supposed dependency and inadequacy of disabled people is perpetuated through the inappropriate application of medical expertise and the growth of the charity sector, and the way disabled people are perceived within the charity model.
Indeed, the medical model, coupled with the charity model, has had a negative influence on the strength of the Independent Living philosophy. Since the onset of the recession, disabled people have been forced to portray themselves as dependent, passive recipients of services rather than equal citizens who can live independently with the help of a Personal Assistance service. This is at odds with the Center for Independent Living’s “rights not charity” mantra. Toolan (2003) notes that being drenched in the doctrine of Catholicism, Ireland has always leaned heavily on the charitable approach, being “a society that is far from comfortable with individual rights” (p175). This can be seen in the current provision of the Personal Assistance Service. Personal Assistance was initially introduced as a pilot project in 1992, funding for which came from the EU Horizon programme. Following the two-year pilot, the regional Health Boards (now the HSE) and FAS continued to fund Personal Assistance, but in technical terms, Personal Assistance still holds “pilot project” status, and seems to be allocated on an “ad hoc” basis, with the number of hours given to Leaders dependent on which CHO (Community Health Organisation) covers that Leader’s service. Contrary to what the philosophy of Independent Living advocates, a Leader does not have full control over the hiring and firing of their Personal Assistants (Mladenov, Pokern & Bulic-Cojocariu, 2019, p21). In addition, Leaders lack control over who works for them, and at what time, meaning that assistance hours provided are uncompromisingly rigid (ibid, p20). Presently, access to a Personal Assistant is dependent on an assessment which is usually carried out by a Public Health Nurse, which focuses on basic activities of Independent Living, such as washing, dressing and feeding. This medicalised approach goes against the social model on which the Independent Living Philosophy is based and, as noted by ENIL (Mladenov, Pokern & Bulic-Cojocariu, 2019, p25) personal assistants are not trained in the independent living philosophy. In addition, access to Personal Assistance is not treated as a human right (ibid, p13). Since the onset on the recession, tasks such as personal care have been prioritised over the need for help with household tasks, accessing employment and education, socialising and shopping. Jolly (2010) notes that attempts to control expenditure on Personal Assistance occurs when a government restricts “the tasks that a personal assistant can do, meaning the tasks that [the HSE or FAS] will pay for a personal assistant to do” (p7). This rationing of Personal Assistance is at odds with the aims of the Center for Independent Living, as noted by Bruce (2000): “From the outset CIL located its activities in the context of seeing disability as a rights and investment issue to enable disabled people to have the same opportunities as their non-disabled peers” (p11, emphasis mine).
During the recession, the right to Personal Assistant Services was constantly threatened by the government, and indeed the service continues to face the threat of cutbacks (Mladenov, Pokern & Bulic-Cojocariu, 2019, p14). In September 2012, the Minister for Health, James Reilly announced that twelve million euro would be cut from the Personal Assistance budget, showing government’s lack of understanding of the true value of the service. The decision was only reversed following a three-day protest by disability activists, calling themselves the “Leader’s Alliance”, outside the Dail. This radical action was necessary as the right to Personal Assistance currently has no basis in Irish law.
In reality, the fact that provision for Personal Assistance is not yet legislated for in Ireland means that the service remains vulnerable to cutbacks at any given time, at the discretion of the Irish government. In 2013, the Center for Independent Living Carmichael House (renamed Independent Living Movement Ireland in September 2018) proposed to legislate for Personal Assistance. On 7 May 2014, a motion was debated and passed by the Seanad to allow for the legislation of Personal Assistance (Independent Living Movement Ireland, 2017). The motion noted that this legislation would build on the Value for Money and Policy Review of the Disability Services, the National Disability Strategy and the Action Plan for Jobs 2014. The proposal for the legislation stated that
the purpose of Personal Assistance is to ensure that people with disabilities enjoy the same opportunities as all members of society, to ensure that they have the same choices as others, and to afford them the means to control how they wish to pursue their lives. (ILMI, 2017, p31)
Under the proposed legislation, it was suggested that Personal Assistance hours would be granted “without regard to any upper limit on the number of hours and without regard to the cost of the service or the means of the individual” (ILMI, 2017, p33). However, the proposal also advised that the Department of Social Protection should take charge of the funding allocation for Personal Assistant Services, raising concerns that the service may be means tested in the future, potentially leaving Leaders “worse off” in terms of the level of service they would receive (ibid, p13).
However, for reasons unknown to this author, the Personal Assistance Bill was never enacted by the Oireachtas. Passing this law would enable Ireland to uphold its obligations in the eyes of the United Nations. According to Article 19 of the United Nations Convention on the Rights of People With Disabilities (UNCRPD), “Persons with disabilities [should] 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” (UN, 2006, p14). Although Ireland was one of the first countries to sign up for the UNCRPD in 2007, it was the last country in the European Union to ratify it on 7 March 2018, after an eleven year wait. In response, Independent Living Movement Ireland initiated a #PASNow campaign towards the end of 2018. It involves encouraging individual Leaders to contact their local politicians and educate them about the importance of the Personal Assistance Service. In addition to encouraging the legislation of the service, the campaign also calls for a rights-based definition of a Personal Assistant, as well as outlining what distinguishes Personal Assistance from home help (Independent Living Movement Ireland, 2018). The #PASNow campaign evolved following research which found that a mere 2,200 disabled people in Ireland received a Personal Assistant service in 2017 (Conroy, 2018, p232). In addition, Conroy notes that almost forty-five percent of Leaders receive a mere forty-five minutes of Personal Assistance a day, which illustrates how narrow and medicalised the criteria for receiving a Personal Assistant has become. Given that a Personal Assistant has been described by many Leaders as “my arms and my legs”, Conroy notes that forty-five minutes is not enough time to allow a disabled person to live a complete life (Conroy, 2018, p231). Clearly, the fact that such a high percentage of Leaders have access to such little service demonstrates that Ireland does not yet perceive Independent Living to be a human rights issue.
In fact, Ireland remains far from recognising the rights of disabled people to live in their own communities, and this is evident from the high numbers living in residential institutions. Inclusion Ireland estimated that as of 2016, just over three thousand disabled people in Ireland were living in residential or congregated settings (www.inclusionireland.ie, Accessed 19 March 2019). Article 19 of the UNCRPD (UN, 2006) states: “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”. However, for many disabled people in Ireland, this is not yet a reality. The HSE report Time to Move on from Congregated Settings: A Strategy for Community Inclusion notes that between 1999 and 2008, more people moved into residential settings (693) than moved out of them into the mainstream community (619) (HSE, 2011, p3). It is evident that there needs to be more investment into Personal Assistance to allow people to move out of residential settings. Conroy (2018) states that Ireland is currently spending three times as much money on institutional and nursing home care than on “home care” (not necessarily Personal Assistance, as in its truest form, Leaders employ and direct their own Personal Assistants) (Conroy, 2018, p235). In 2015, Martin Naughton organised a three-day protest outside the Dáil following an announcement by Taoiseach Enda Kenny that four hundred and fifty million euro was to be invested into institutional living arrangements for disabled people. In his explanation about why the protest was organised, Naughton said
If the Government continues to go down the route of refurbishing and building home care and residential settings, as they have announced, they will have to put people into those homes. We need to get away from this model of incarceration. (Flaherty, Irish Times, 2015)
It has been noted that Ireland finds it difficult to embrace independent living provisions, preferring instead to rely on outdated solutions such as residential institutions (Mladenov, Pokern & Bulic-Cojocariu, 2019, p18). However, the challenge in convincing governments to invest in Personal Assistance is not exclusively an Irish one. Speaking at the European Day Conference for People with Disabilities in 2011, UK activist John Evans feared that a potential effect of a lack of Personal Assistance was that it could once again give rise to a culture of institutionalisation (Evans, 2011). In an attempt to highlight this issue, disabled people across Europe partake in a biannual “Freedom Drive”, an initiative which was the brainchild of the late Martin Naughton, and began in 2003. The activists typically present their “demands” to the European Parliament, most notably the demand to close residential institutions and to legislate for access to Personal Assistance. Besides being in violation of Article 19 of the UNCRPD, Conroy (2018, p233-4) notes that the four main characteristics of living in an institution (“depersonalisation, rigidity of routine, block treatment and social distance”) are at odds with the philosophy of independent Living. In addition, being “warehoused” in an institution is often associated with a reduced quality of life as Maggie Hynes, a disabled British activist noted: “Institutions were places where people like me died in” (Hynes, 1983; cited in Morris, 1993, p22).
One example of the inappropriate use of institutionalisation in Ireland was the case of Julia Thurmann, whose case has garnered much media attention since 2014. Thurmann, who was hospitalised after contracting the ADEM virus, is now paralysed from the waist down, but is still able to work and would be able to live fully independently had she accessible housing and a Personal Assistance service. However, due to the fact she could not move back to her inaccessible flat on her discharge from Dun Laoghaire Rehabilitation Hospital, she has spent the last ten years living in a nursing home in north County Dublin. It was reported in the Dublin Gazette that Thurmann spends four hundred euro a month on taxis in an attempt to ensure that she is not isolated from her mainstream community (Pownall, 2019). At the beginning of this year, Thurmann was informed that accessible accommodation would be made available to her by the end of 2019, after an eleven year wait.
Another consequence of the failure to legislate for Personal Assistance is that it often leaves disabled people with no choice but to rely on family members for assistance. As a consequence, families become under strain, and disabled people cannot enjoy meaningful relationships with family members as equals. This is a threat to the independent living philosophy, as it reverts back to the notion that disabled people are objects of care instead of autonomous individuals. Morris (1993) notes that
In the context of economic inequality which accompanies physical impairment […] the need for personal assistance has been translated into a need for ‘care’ in the sense of a need to be looked after. Once Personal Assistance is seen as ‘care’ then the carer, whether professional or a relative, becomes the person in charge. The disabled person is seen as being dependent on the carer, and incapable even of taking charge of the personal assistance he/she requires. (Morris, 1993, p23)
It can be argued that portraying the disabled person as an object of care dehumanises both the disabled person themselves and those who care for them. The challenges facing family carers in Ireland have been highlighted over the last few years, most notably with an RTE documentary aired in 2017 entitled “Carers in Crisis”. One of the mothers in the documentary, Johanne Powell, who cares for her severely disabled daughter Siobhan, now in her mid-thirties, spoke about her reality as a full-time carer. In 2013, the Irish Times reported that Siobhan had been offered a place in a nursing home, which undermined Johanne’s request for home support so that Siobhan could continue living at home with her family (O’Brien, Irish Times, 2013). Although it could be argued that Siobhan is too mentally incapacitated to make any meaningful decisions over her own life, denying her the support she requires to remain in her own home evidently places strain on the mother/daughter relationship. In an interview on the Late Late Show in 2017, Johanne admitted: “I am bored, depressed, I want more, I want a life for myself” (www.irishexaminer.com, November 2016). Currently in Ireland, as noted by ENIL (Mladenov, Pokern & Bulic-Cojocariu, 2019, p18), a person’s eligibility for Personal Assistance is in part dependent on the availability of family members to assume ‘caring’ roles. This is problematic because aging parents who are currently caring for their disabled children cannot shoulder the responsibility alone, as the Carers in Crisis documentary demonstrated.
In conclusion, it is clear that the integrity of the independent living philosophy in Ireland has faced significant challenges since the onset of the economic recession. It is important to remember, however, that these challenges will not be eradicated by financial investment alone. Those who wish to truly embrace the Independent living philosophy need to have confidence in their own ability and power. In addition, they must reject the association of disability with charity and embrace their rights to the various supports they need in order to live independently. However the reality is that the status quo regarding Independent Living in Ireland will remain until Leaders themselves are truly empowered, through the implementation of legislation and the adoption of a rights-based approach, to make decisions affecting their own lives.
Berghs, M (2014) The Global Economy of Care from Swain, J, French, S, Barnes, C and Thomas, C Disabling Barriers – Enabling Environments (3rd Edition) London: Sage
Bruce, A (2000) Towards A New Millennium (Independent Living Movement Ireland) www.ilmi.ie
Conroy, P (2018) A Bit Different: Disability in Ireland. Dublin: Orpen Press
Conroy, P, Dixon, S & McGrath, C (2006) Extending the Boundaries: Our Experience of Independent Living. Dublin: CIL Carmichael House.
European Network on Independent Living (2015) European Network on Independent Living: Personal Assistance Services in Europe 2015 from www.enil.eu/wp-content/uploads/2012/06/Personal-Assistance-Service-in-Europe-Report-2015.pdf
Evans, J (2011) Rights and Social Inclusion or Cuts and Social Exclusion (speech given atEurope’s Way out of the Crisis: The Disability Rights Perspective European Day Conference for People with Disabilities Brussels, December 1st 2011) from https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/evans-The-impact-of-the-austerity-measures-on-disabled-people-in-Europe.pdf
Flaherty, R (2015) “Disability Protesters Disappointed after Meeting Taoiseach” from the Irish Times Online: https://www.irishtimes.com/news/social-affairs/disability-protesters-disappointed-after-meeting-taoiseach-1.2356009 Accessed 10 March 2019
HSE (2011) Time to Move on from Congregated Settings: A Strategy for Community Inclusion www.hse.ie
Inclusion Ireland (2016) http://www.inclusionireland.ie
Independent Living Movement Ireland (2017) Center for Independent Living Leader Forum Consultation Report: Personal Assistance Services from https://ilmi.ie/wp-content/uploads/2018/07/Personal-Assistance-Report-2016-.pdf
Independent Living Movement Ireland (2018) Campaign for Personal Assistance https://ilmi.ie/wp-content/uploads/2018/10/ILMI-Personal-Assistance-Campaign-Leaflet-min.pdf
Irish Examiner (2015, author unknown) “’You grieve for the child you thought you were going to have’ Johanne Powell talks about life as a carer” from https://www.irishexaminer.com/breakingnews/discover/you-grieve-for-the-child-you-thought-you-were-going-to-have-johanne-powell-talks-about-life-as-a-carer-765894.html Accessed 20 March 2019
Jolly, D (2010) Personal Assistance and Independent Living: Article 19 on the UN Convention on the Rights of People with Disabilities. Leeds University Archive
Mladenov, T, Pokern, Y & Bulic-Cojocariu, I (2019) PA Checklist – A Tool for Assessing Personal Assistance Schemes. https://enil.eu/wp-content/uploads/2019/02/Mladenov_Pokern_Bulic-PA_Checklist.pdf?sfns=mo Brussels: European Network on Independent Living
Morris, J (1993) Independent Lives? Community care and Disabled People (Part 1) London: Macmillan (accessed on leeds.ac.uk/disability-archive)
O’Brien, C (2013) “HSE offered disabled woman place in nursing home despite wishes of parents” from the Irish Times online: https://www.irishtimes.com/news/social-affairs/hse-offered-disabled-woman-place-in-nursing-home-despite-wishes-of-parents-1.1416012 Accessed 14 March 2019
Pownall, S (2019) “45 year old Julia hopes her 10-year stay at a nursing home is at an end” from the Dublin Gazette online https://dublingazette.com/news/news-fingal/julia-swords-38924/ Accessed 19 March 2019
Ratzka, A (2017) Self-determination for Persons with Extensive Disabilities through Direct Payments for Personal Assistance from the Independent Living Institute:https://www.independentliving.org/docs7/Self-determination-direct-payments.html Accessed 1 March 2019
Toolan, D (2003) An emerging rights perspective for disabled people in Ireland: An activist’s view from Quin, S & Redmond, B (eds) Disability and Social Policy in Ireland Dublin: UCD Press
United Nations (2006) The United Nations Convention for the Rights of People with Disabilities www.un.org/disabilities/documents/convention/convoptprot-e.pdf Accessed 10 March 2019
I turn down the radio as I pull up to the house. It wouldn’t make a good impression to drive into the driveway, Jon Bon Jovi blaring as I get out of the car. Instead I choose to park just outside the gate I grab the little clear bottle of hand sanitiser that has been rattling around my dashboard all morning, wincing as I rub the stinging liquid into my skin. My first call of the day – well, my first call ever, actually. My hair is tied back and I’m wearing the freshly ironed uniform given to me by the agency. The app I’ve downloaded onto my phone informs the admin team when I’ve arrived; I wait until 8 A.M. on the dot before “clocking in”. There’s no point clocking in early; I won’t get paid for it anyway.
The unkempt garden looks like a magical Christmas wonderland in this heavy frost and suffocating fog. Underfoot lies a glassy red and orange leaved carpet, which could easily be mistaken for a skating rink. I navigate the driveway with caution, cursing myself for choosing these snappy-looking heels. I still wear them, even though I left the solicitor’s firm a year ago. Well, left isn’t the right word, exactly, but I never elaborate unless asked. Come to think of it, I’ve never been asked; this is my first job since packing up my small, cramped desk of nearly eighteen years.
I ring the doorbell, hearing it echoing up the hall. On inspecting my notes this morning, I read that this client has a key, hidden in a small brown box under the unruly shrub in the corner. However, I don’t think it would be appropriate to use it for our first meeting. A shadow appears in the hall. The height of the shadow doesn’t even reach my chin. I inhale sharply as the blue door opens.
“Hello there!” I say, with as much enthusiasm as I can muster. “I’m Marie. I’m your carer today.”
My client merely grunts in reply, swinging her wheelchair back so I can squeeze past her in her narrow hall. The bulb overhead is far too bright; under its harsh, unforgiving light, this woman looks fifty, but I know from reading her file that she isn’t even thirty yet. Some of them are just like that though, aren’t they? Old before their time. Her mouth is fixed in a firm line, her fists are wrapped around the wheels of her chair. She isn’t impressed to see me.
I follow her into the kitchen, which was once a buttery yellow but has been made grubby with fingermarks and blackened with smoke. Over the small, white, standalone hob/oven in the corner, splatters of oil and bits of pasta cling forgotten to the walls behind. A St. Brigid’s cross hangs sideways over the door. On the kitchen door itself, as I close it behind me, there hangs a 2017 calendar from Emo Oil, on the March page. Time seems to have frozen since: it’s November 2019 now. Certainly the table looks as though it was abandoned during a zombie apocalypse: a stack of old Offaly Independents, a thick-based laptop with the screen closed down, an array of old socks. It saddens me to think that this is how any thirty-year old woman should live.
“So, according to your care plan,” I say as I flick through the pages, “you need a hand with getting dressed and your breakfast which is normally jam on toast. Is that correct?” I smile at her as I pull on the latex gloves, a standard issue from head office. She doesn’t smile back.
“Where’s Nuala?” she says in an accusing tone.
She’s exasperated with me already. Not a good start to the day.
“Yes, Nuala. The woman who normally works here. I wasn’t told she was being replaced.”
This must be a test, I think. “You’ll have to ask the office. I was just sent here this morning. I’m just following orders. Don’t worry, I’m fully trained. I know what I’m doing.”
“Just got my certificate last week,” I say, swelling with pride as I relive the moment I was handed the award, as well as an extra award for being top of my class. I’d always had a mind for theories, for essays. The course had been a piece of cake.
She rolls her eyes and makes a retching noise. “You’re early,” she says, rummaging in her handbag. To my horror, she pulls out a black cigarette box. “I like to have my morning fag before I do anything.” Before I can stop her, she pulls one out of the box and lights it.
Oh hell, I think to myself. I hadn’t imagined landing head-first into a scenario like this. I wonder if the office staff are going to pop out from behind the door and shout “Smile, you’re on Candid Camera!” popping streamers and blowing those annoying kazoos that are thankfully disappearing from kids’ parties these days. God bless the drive to cut the unnecessary plastic.
She’s already taken three pulls before I have the courage to say: “Sorry, this is my workplace. You can’t smoke.” I would go as far to say I hate smokers. They’re so inconsiderate and selfish, and they rarely think of anyone but themselves.
She shrugs, continuing to smoke, blowing the smoke in my direction, which I think is definitely taking the piss.
“Yeah, well, it’s my house.”
Her obstinance is grating on me. “Well, according to this handbook,” I say, grabbing it out of my handbag and flicking through the pages, “section fourteen says that because of the Tobacco Act 2004, all workplaces must now be work free.” I stuff the manual back into my bag. Thank God I didn’t leave it on the kitchen table; I knew that I’d be needing it. “And now,” I continue, looking at my watch, “I only have twenty-five minutes to get you done, so if you want a shower, you may hurry up. I have five other clients this morning.”
Her face is hurt, like a chastised child’s.
“You’re not allowed shower me,” she informs me. “That’s a two-person job. Didn’t they teach you that on that fancy FETAC Level 5 course? Anyway, it’s not Thursday.” Bloody newbie, I hear her mutter to herself.
She stubs the cigarette out on a saucer and wheels out past me again. I follow her, feeling the damp emanating from the walls. Her bedroom is small and dark, and the floor is covered in clothes and shoes. I can barely follow her in. Looking at the mess, I can’t help but feel sorry for her. If only I had time to tidy up for her, but I don’t. it’s only my first day but I’m determined to make a good impression; ergo, I must be punctual for all my clients. Anyway, this lady, like all the people I’m scheduled to help this morning, surely knows what the drill is by now. She knows that I’m not made of time. I wonder does she do this with all her carers: try to stretch out her time, chance her arm?
“Can I have my Adidas hoody and tracksuit bottoms?” she asks me. I can’t seem to put my hand to the bottoms; the room is in chaos. Though I can see why. Apart from this tiny dresser, this girl has no accessible place to store her clothes. I haven’t seen the hotpress, but I’d imagine the shelves are too high to be reached from where she sits in the wheelchair.
Time is really running out now. “I can’t find your bottoms. Can you wear these Reebok ones instead?”
Again, she doesn’t look happy. “Go on then,” she says, sitting still as I pull them up her legs.
It must be strange for her, I think, being dressed by a total stranger. Honestly, I don’t think I would like it. As I sit her back down in the wheelchair, for a second I catch a glimpse of my own future, and I don’t like it. If I’m being honest with myself, I think I’d rather be dead. That’s what Tom and I always said: if we became old or crippled before our time, we would be on a plane to the Netherlands and we wouldn’t be coming back. I personally could never burden anyone like that.
“Now,” I say, too brightly again. I keep forgetting that I’m not talking to a child. And yet there’s something childlike and vulnerable about her. For starters, she’s evidently unable to keep house, although I’m starting to suspect this might be because she doesn’t want to. “Any plans for today?”
She shakes her head, staring out the small, dirty window into her jungle-like back garden. I wonder if I’m the only person she’ll see today, at least until the night carer comes back to help her get ready for bed. A hacking cough shakes me out of the daze I’m in.
“I might go to the day care centre.” Her voice is indifferent. If this was the most exciting prospect in my day, I suspect that I would be equally unenthusiastic. “I don’t like going there too much. Bunch of auld grannies.” She looks up at me. “I don’t suppose you have time to straighten my hair?”
For what I think. The day care centre? I wouldn’t imagine there to be any fine young specimens in there. I worked in the Ballingar centre as part of my work experience and it was like witnessing an eightieth birthday in a care home. It was depressing to think that people the same age as I was lived like this, often only seeing the four walls of their home. I think of myself at thirty, almost fifteen years ago. John and I already had five years paid off our mortgage on our beautiful four-bed detached in Whitehall Estate. I was juggling my blossoming legal career with two kids under the age of five. I remember the odd days that I skived off work, meeting Margaret and Brenda for coffee, and sometimes the odd liquid lunch. Even at the time, I remember thinking that I would look back on those days with nostalgia. Now, I was looking down at a girl – sorry, a woman – whose excitement probably revolved around that morning fag and some inane chit-chat in a day care centre. Worst of all, she seems to be resigned to this. This is her life. I feel a little deflated.
We sit in silence as I straighten her hair and I watch in satisfaction as I tame her unruly locks into a professional-looking bob. I missed my calling, I think to myself. I should’ve been a hairdresser. To my surprise, the edges of my companion’s small mouth are inching upwards towards her cheeks. I feel a lukewarm glow in my chest, a hint of a natural high. As if by magic, this lady now looks slick, elegant. If this is having such an effect on boosting my self-esteem, I can only imagine the effect that something as simple as having her hair straightened has on her.
“Now,” I say, looking at my watch. “I’ve five minutes left. Do you want something else? Breakfast? Cup of tea?”
She nods. “Tea and toast would be great.”
We go into the kitchen and she shows me where everything is. I make her toast and cut each slice into four automatically, as I used to do for my children. This makes her smile a little.
“Sorry. I suppose I should’ve asked you what way you cut your toast.”
“It’s fine. Toast is toast,” she says.
My forty-five minutes are up, it’s time to leave and go to the next client. I pull out the care plan, and tick the boxes Personal Care and Feeding. I’ve done what I was sent here to do. I suppose there has to be some way of regulating the industry, certain standards to be met. But it must get boring for her, the same thing morning after morning. On reflection, I think she handled herself quite well, considering I’m a total stranger, rooting around her home.
“Well, I’m going to head,” I say, gesturing towards the door.
To my surprise, she nods and says, “Will I see you tomorrow?”
“It depends on my rota, I’m afraid. Sorry,” I add, and I mean it. This girl obviously doesn’t know who’s coming into her house from one end of the day to the next. I could not imagine being okay with such invasions to my personal space.
I trot back towards my car, cursing myself again for wearing these damned high heels. For the first time since leaving work, I’m missing the chaos of my desk, being able to hide behind piles of unopened letters and emails, dealing with cold, hard logic instead of having to face my feelings and the realities of others.
As I drive away, I realise that the girl – sorry, woman – never even told me her name. Maybe she assumed I knew. Maybe she thought it wouldn’t matter, her being on a long list of clients waiting for my help. I glance at the file beside me – her name is Denise.
It’ll be interesting to see if I ever see Denise again. Perhaps I will, perhaps I won’t.
Either way, I’ll always have other clients.
I pull up to the next house, ready to do it all again.
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 email@example.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)
In case you are wondering what triggered this poem, there was no further investment into Personal Assistant Services in Budget 2020.
You want us to be silent –
To just sit here and nod
While you decide what’s best for us
and play at being God.
You ignore our pleas for equality,
For a chance to show our worth,
In fact, you’ve already decided
That we’re nothing more than dirt.
Oh, are these wild accusations?
We respectfully disagree
When all people can get married
while we still struggle to be free.
You treat us like mere children
Who need to be protected
And when we ask for our rights,
Our demands are all deflected.
See, there’s no money for the cripples
To live a decent life
Everyone is struggling
And experiencing strife.
Well, now we’re calling bullshit
On your half-assed excuses
Because, with the right support,
Us cripples have our uses.
But we’re sick of being grateful
For things we do not want,
Of having to pander to your rules
When we really want to rant.
Our predecessors fought tooth and nail
for our freedom and independence,
and yet we’ve been reduced to the hell
of care plans and needs assessments.
We’re made to be accountable,
to justify our life choices –
the sound of rustling paperwork
drown out our screaming voices.
And now, I see young people
In homes before their time –
Some only in their twenties who
Haven’t even reached their prime.
I just thought I’d give them a mention
While you wait for your fat pension.
Why aren’t people more angry, you ask,
if these issues are so bad?
Could I possibly be exaggerating
Or am I simply going mad?
But I know you know the answer –
People are paralysed by fear
And you must know, deep, deep down
That they won’t say what you want to hear.
So you choose not to listen,
to deny us basic rights
knowing that we are getting tired
of all these uphill fights.
The soft approach isn’t working,
and while I hate to curse
Your fucking lack of consideration
is making our lives worse.
You wouldn’t put up with this shit –
Why the hell should we?
The revolution is coming,
Even if it has to be started by me.
And so, I call on all my comrades
from all corners of this land
to say we deserve better
and finally take a stand.
Our lives really matter
and deserve proper investment.
We need our PA services
to make us independent.
Get rid of institutions and stop people
From being trapped in their homes.
Invest in our future
Or endure more of these angry poems.
What a luxury)
(This short story was written in aid of World Suicide Prevention Day which takes place each year on 10th September. So I’m a little late. I apologise if this story upsets anyone but it doesn’t belong to me, it belongs to the *fictional* character)
Méabh smoothed out her silk olive green shirt. It looked baggier on her now, just as she had originally intended it to look when she first bought it. Her silver pendant, with two little pictures of the kids inside, hung loosely around her neck, giving her a look of carefree sophistication. She tousled her hair with her right hand, noting that the persistent greys were more prominent than usual. When was the last time she’d dyed it? She couldn’t remember. This inability to remember things, to retain basic pieces of information was starting to grate on Méabh. Once she had prided herself on being unnaturally organised, taking the jibes from Niamh and Diarmuid as good old-fashioned banter. Now, she felt that things were slipping away from her, but she couldn’t articulate what these things were. Time, her memory, her sanity? She tugged the skin on her face towards her cheekbones. This is what I look like now, she thought, an old turkey with excess skin like a sucked-out stomach after liposuction. That’s how she felt too: sucked out, hollowed, empty.
She threw the dishevelled duvet over the king-sized double bed, Conor’s suggestion of course. What an idiot I was, she thought, smoothing over the corners, just like she felt she was constantly smoothing over their marriage. They’d bought it a few years before she’d began sleeping in the spare room, when the children were still small. She had thought that such an extravagant purchase was a statement of where they were in the world, a sign that their marriage could be rescued. It was certainly a far cry from the old, springy mattress she’d slept on as a child, turning and readjusting so that the springs didn’t rub against her ribs. Conor had promised her that she would never be so neglected again, that she would always have food and a roof over her head. And she strove to be a better mother than her own mum ever was.
Nobody could dare accuse Méabh of being anything less than a wonderful, doting mum. It was well- known among the locals of Tullamore how incredibly organised and talented she was: she had always donated baked goodies to the kids’ school cake sales made from scratch; she had presided over the Parent’s council in Tullamore College for seven consecutive years; for sixteen years she ferried the kids to their after-school activities day after day, and was never without a kind word and a warm smile for those she met on the way. Whenever she spoke of Niamh and Diarmuid, her heart seemed to swell with pride. Diarmuid had just a few weeks before moved up to Dublin to be with his big sister in UCD. She was studying Arts while her brother wanted to be a doctor, just like his father. Indeed, he was becoming increasingly like his father, reflected Méabh: cold, arrogant and unfeeling.
Now that the children had flown the nest, the grim reality of how toxic their marriage had become was truly beginning to take hold. Conor had never been cruel to her in front of the children: distant, certainly, but until lately he had never descended to the depths of calling her names, putting her down, criticising her ironing, her cleaning efforts, her cooking. Perhaps, reflected Meabh, that was owing to the fact that there was always the children to act as a buffer between them. She hated herself for putting them in that position, and became disheartened often by how easily they had accepted it. Just like her Sunday roast dinners with the gravy made from scratch, watching her children referee between her and Conor had become a part of their lives.
At precisely five to eleven, the letterbox jangled. She heard the heavy thud onto the mat in the hall. Another pile of final notices, no doubt. Lately her post seemed to come in clumps, a collection of demanding letters and legal threats. For a moment, Méabh allowed herself to fill with self-pity. This is not how I imagined life at fifty, she thought, rubbing her temples. She’d hoped for a career of her own, something in fashion perhaps, something that would solidify her purpose. Now that the kids were gone and her marriage was on the rocks, she felt deprived of the opportunity to make her own identity. But she was just doing what women did at that time: she raised the children while Conor focused on his career. She hadn’t resented him for it, then.
She sat on the bed, staring into space, hoping to hypnotise herself into some kind of mental paralysis. Her heart was racing, as if she was about to get caught doing something wrong, as if someone would burst through her bedroom door and unmask her as the imposter that she knew deep down she was. Using the palms of her hands, she pushed herself upwards, feeling her cold blood rush to her feet. She didn’t have time to sit around moping. Those buns would not bring themselves to the school coffee morning.
Few things lifted Méabh’s spirits these days like seeing her pristine kitchen glow in the orange September light. The light shone from the marbled grey countertops and the black presses were immaculately clean. Méabh was proud that, at first glance, no-one would be able to tell from looking at her kitchen that she was a keen baker. Once she had all the ingredients organised, she loved to bake: to feel the flour clumping between her fingers, to watch the eggs, butter and sugar creaming in the mixer. The tubberware box in the corner of the counter was the reward for her efforts. Everyone always complimented her on her buns, her cooking. In fact, it seemed that everyone in Tullamore was envious of her full stop. Meabh acknowledged this without arrogance. She knew that her address of Clonminch Road was not merely her home but a status symbol, a statement about her place in life. Once she and Conor separated, where would she end up? What would her new address say about her?
Finally, she grabbed the keys to the Merc and trotted out of the house, wearing her shiny black high heels. She hopped into the car, carefully placing the box beside her on the seat. For a second, she stared into space, trying to remember why she was in the car. The kids probably wouldn’t have approved of her continuing to support school activities but, as she reflected, at least they were not here to suffer the embarrassment of her. Suddenly, her heart froze. Had Niamh really not been home for a whole weekend since the beginning of May, four months beforehand? Meabh was saddened by this realisation, but she knew why. In fact, she and her daughter had only spoke about it two weeks ago.
‘I don’t live there anymore, mam,’ Niamh had said on the phone, ‘so there’s no point in me coming home. Anyway, it doesn’t feel like home, you know what I mean?’ Niamh’s honesty had shaken her. Meabh had always thought that whatever was going on between her and Conor, she had always ensured that the kids felt secure and loved. She also hadn’t bargained for how much she’d miss her only daughter and their cups of hot chocolate in front of the Late Late Show every Friday night, going shopping in Athlone on Saturday afternoons, going for dinner in the Court every Sunday. Once, she had even seen Niamh not only as her daughter but her best friend. Alas, Méabh had let her down somehow. Niamh came from a different generation, Meabh reflected; she didn’t need the approval of a man or any kind of partner to justify her existence. That’s where I went wrong, she thought as she started the car.
As she pulled into the parking space, Meabh felt ashamed. I’ve no right to be here, she thought, watching the other mums walk in together, laughing and smiling. She envied how carefree they all seemed to be, some of them even wearing long shapeless t-shirts and plimsolls. Regina Hogan always came to these events in her tracksuit bottoms, the grey one with the red paint down the left leg. It annoyed Meabh that she never made an effort; some days, the woman barely looked presentable. And yet, Meabh noticed, Regina seemed happy. In fact, she was everywhere: at fundraisers, community events, sponsored walks. She waved as Meabh got out of the car, revealing a wet patch of sweat under her arm.
‘Well, pet,’ she drawled as Meabh walked towards her. ‘Aren’t you very good to take time out of your busy schedule and come up here with us commoners, eh? They look gorgeous,’ she said, opening the box in Meabh’s hands, then leant in closer to her, releasing a raspy laugh. ‘I bought mine in Flynn’s this morning. Was never one for this baking lark.’
‘Not for me. I’m an ‘ater, not a baker. We can’t all be as talented as you!’
Méabh was becoming irritated now. ‘I wonder how many will turn up,’ she said, quickening her pace, her high heels clacking behind her. The smell of old gym sweat, of cheap deodorant and cheese and onion crisps hit her as she opened the door, holding it open for Regina.
‘Thanks, pet,’ Regina smiled at her, flashing her yellow- brown teeth. ‘By the way, haven’t seen you working in the shop for a while. You still there?’
‘No.’ Méabh was tired. ‘Ah, it was just something to get me out of the house now that the kids are gone. Turns out I have plenty to keep me occupied!’ She held up the buns as Regina smiled and walked down the corridor towards the gym. It surprised her that Regina had noticed that she was not working in Centra anymore. Did anyone else notice, she wondered?
She wished she had the courage to tell people the real reason: that up until a few weeks ago, Méabh had spent the majority of every day in her pyjamas. That she had found every single task to be physically exhausting, from brushing her teeth to making a cup of tea. Conor had been gone for a month on one of his so-called business trips to Dubai, but Méabh wasn’t stupid. She knew that there was another woman involved, and that there had been for a long time. When she was in the house, alone, there didn’t seem any point in cleaning, cooking proper meals; mostly she’d lived on beans on toast or micro meals. It wasn’t her usual style: Meabh had once been a great believer in the benefits of healthy eating.
Frightened that she was starting to lose her mind, Meabh had gone to the doctor two days beforehand. She knew she wasn’t right: she’d even had two cigarettes the day before, despite not having smoked in nearly thirty years. It had killed her to confess that to the doctor.
I don’t feel like myself at all, she’d said.
Dr Murphy rubbed his head with his pen. You were fifty last week, yes?
Meabh had been insulted. I don’t think that’s relevant, Doctor.
Perhaps it’s all part of the menopause, he said, looking blankly at the screen in front of him. You ever been on Prozac, or Valium? It might help. Do you feel anxious? Meabh conceded that she did, that as long as she could remember, she had always been what her mother called ‘highly strung’.
Calm down, he’d said to her. Try some mindfulness or meditation. There’s apps for everything these days. He wrote her a script for Valium and held it out to her.
One more thing, he said, still distracted by the computer. Have you ever had unwanted thoughts? Méabh had frozen, feeling as if Dr Murphy had caught her unaware in complete nakedness. She felt invaded, exposed.
No, she’d replied, giving a small laugh at the absurdity of the idea, then, as an attempt to inject some humour into the tenseness, she added: Don’t worry, I love myself too much to do away with myself! She’d snatched the prescription off the table, not looking back as she’d walked out, holding her head high.
Now, Méabh sat in the car, watching the windscreen wipers move back and forth, squeaking slightly as they rubbed against the window. Squeak swish, squeak swish. This noise, she reflected, represented where she was right now: just going back and forth, going through the motions but not actually going anywhere. She was tired from her efforts of making polite conversation with other parents when really what she had wanted to do was crawl back into bed. The rain pelted loudly against her window, demanding to be let in. The six foot walk to her front door seemed impossible, then. If she got up, walked over and turned the key, she would then have to make dinner. Then she would have to clean up after and be in bed before he came in. And she would be doing this same thing, over and over, until they separated and she ended up in a grotty little bedsit on Church Street. That was assuming she could afford the rent and bills, of course, not to mention the bills that were waiting for her now, neatly stacked on the pristine counter.
Méabh’s entire body felt heavy.
This is it, she said. I cannot do this anymore.
She turned on the radio in anticipation of having to drown out the floods of tears that she wished she could cry. Still she felt nothing. Not sadness, not anger: nothing. She opened the box of Valium and took one, and told herself she felt better. Then she took another, and another. The loud radio hummed around her, like a choral chorus, hemming her in:
…and it’s not a cry, that you hear at night;
It’s not someone who’s seen the light,
It’s a cold and it’s a broken halleluiah….
The music became increasingly muffled. Then, silence, the silence she’d been looking for. Diarmuid would find her slouched over the steering wheel, her silver pendant broken and the two kids grinning up at her from her lap. In these photos, they would never get older, and neither would she.
Absolutely shocking, they would say, later, after the news broke. She had so much going for her. Those beautiful children, God love them.
How’s Diarmuid going to cope now? Sure a couple more suited to each other I’d never seen!
…and she was so talented and all, ah wasn’t she just a lady?
Now Ann Kelly told me the other day she thought she might’ve got fired from that shop that she was working at…
Sure what is this town coming to, everyone killing themselves, what is the story?
Méabh would soon be yesterday’s news, and her neighbours would go on as before: smiling at each other, giving a friendly wave, or avoiding each other’s gaze, hoping nobody would ever discover their pain. All they had now was pointless speculation, and a ‘For Sale’ sign where she used to live.
(I think this blog should sufficiently explain my absence over the last two months)
When I was sixteen and in Transition Year, our class acquired a new student. Her name was Melissah and she was Australian. As we got to know each other better, she told me more and more about Oz. My imagination went into overdrive as she spoke about diving in the Coral Reef and hanging out on the sunkissed beaches. It sounded like an extended episode of Home and Away and I knew that before I lay on my deathbed that I would have to see it for myself.
Melissah (‘Missy’) invited me and a few of the other girls I was friends with in school back to Australia with her, to partake in an exchange programme, but when I asked my parents, they looked at me as if I’d asked to remortgage the house. Possibly the same look I would give my own darling daughter if she randomly came home one day, at the age of sixteen, and said she was going to Australia for the summer with her pals. Sure, hun, whatever you think yourself! Get smashing that piggy-bank!
There would always be an excuse/reason for me not to go to Australia. First I had college, then I got a job straightaway with Offaly CIL, then I got married and had our beautiful daughter. I had become resigned to the idea that Australia would only ever be a pipe dream when on the 11 December 2018, as I was en route to a meeting in Carmichael House in Dublin, my husband rang to say that the flights had been booked for the second of July 2019 and to check my email to see if my Visa had come through. I don’t remember much about that meeting as I spent the entire two hours trying to be professional and not burst from uncontrollable excitement!
Having the trip of a lifetime to look forward to certainly helped me through what has been a hectic year so far. On top of trying to keep my writing going, I somehow completed the Certificate in Disability Studies in NUI Maynooth and gave two presentations about motherhood and disability in NUI Galway. I’m glad I was so busy this year because it meant that I felt like I earned the break. Before leaving, there was much deliberation over whether I should bring my electric wheelchair on the flight. To clarify for those who don’t know me as a person: my wheelchair is like a car to me because I cannot drive. It is a crucial piece of equipment in maximising my independence. Ultimately, however, we decided it was safer to leave it at home in one piece after reading several horror stories about mishandled electric wheelchairs in various airports.
Of course, a massive part of our decision to go over to Australia – and Perth specifically – was because my darling sister Alexandra has lived there for the last eight years. Alex moved to Oz two weeks after I discovered I was pregnant with Ali. When Alex heard we were coming, she was delighted and she generously offered for us to stay with her in her ‘little’ house for five weeks. This made the trip much more affordable for us and we got on without any major rows; at least we’re still speaking! I have to say she treated us really well – cooked us yummy dinners, drove us here, there and everywhere and brought Alison on days out when we were too wrecked to parent, or go anywhere. I am indebted to her and her partner Colm for these reasons alone.
The first thing I learned about Australia on our arrival on 4 July is that everything is so spread out. What I mean by that is that unless you are wealthy enough to live bang in the middle of Perth, you will need a car. Alex lives in Heathridge and while the nearest shop is five minutes’ drive away, it would probably take about forty-five minutes to walk. However, having seen the M50 of late, driving in Oz is relatively simple: people still drive on the left hand side and the roads are in excellent condition with few windy, unkempt roads. You can even cut across dual carriageways at designated points to turn around if necessary, or to cut to your destination.
Our first port of call was to the Joonalup shopping centre and the arcade, as we were unfit to do much else. On the Friday, we ventured into Perth to see Scitech, which was fully wheelchair accessible. It has interesting experiments and equipment and Ali loved it. After that, we went for an evening stroll in King’s Park, where we were overwhelmed by the magnificent view of Perth city touching the winter skyline. We saw the war memorial and picked up a nice parking fine for parking in an accessible parking space without a permit. Afterwards we applied for a wheelchair parking permit which was granted and issued within a few days. That wouldn’t happen in Ireland!
On the Saturday we went to Caversham Wildlife Park where we saw the kangaroos up close. Their legs move as if operated by springs! We also saw koalas, parrots and llamas. There was a cowboy show and Alison and her new friend Charlie got to milk the cows. We got our photo taken with a wombat (who clearly hadn’t taken a shower in some time) and a koala. Those koalas have sharp claws, and are much heavier than they look! Still, it was an absolute honour to get so close to one.
The following day, we took it easy and watched the sunset on Burns’ Beach, a five minute drive from Alex’s house. The beach itself was spectacular and there was even a little playground for Ali and Charlie to play in. I noticed throughout our holiday that there was always a playground nearby, and not only were they clean and well-maintained, they tended to be physically challenging too: as well as the usual slides and swings, many of the parks we went to including in Mullaloo, Fremantle, Hillarys and especially the parks along Scarborough beach also had climbing walls, monkeybars and obstacle courses. Great for keeping the kids fit!
Our day out in Fremantle was extremely enjoyable. We went on a tour to Fremantle prison, which was open up until the 1980s. We saw where prisoners were hanged and as a disability activist I was pleased to hear that even wheelchair using offenders were accommodated in receiving this gruesome punishment! (Equality for all and all that). Afterwards Ali enjoyed her first taste of ice-skating in Fremantle’s ‘Winter Wonderland’. It took a few minutes but she eventually got the hang of it, with a little help from auntie Alex!
The highlight of the holiday was undoubtedly the road trip to Albany. Five hour drive down south through the bush, us three and Alex in the car. ‘Not much to see’ said Alex, and she was right: miles and miles of blackening trees, some of them with the bark burned off, and the occasional kangaroo corpse on the side of the road, which was devastating to see. Albany is a breathtaking place. After you see it, Bundoran and Kerry don’t seem to measure up! We stayed in a motel beside Middleton Beach, within walking distance of a beachside restaurant and another well-maintained playground. In the evenings we could have our dinner and chill out while we watched Alison play. The atmosphere was so relaxed out in comparison with Perth.
From Albany we headed back north to Denmark, a quaint little town. We had booked a cabin to stay in called “The Green Leaves Cabin”. I won’t lie: when I heard cabin, I had visions of something akin to a treehouse: damp, airy and cold. From the outside, it seemed rather quaint but on the inside… I don’t think it’s an exaggeration to say that in many ways, it’s nicer than my own house. The living area was enormous, with a wood-burning stove and bookshelves stacked with contemporary books and board games. I cheated on the second night in Denmark by initiating a game of Scrabble and taking advantage by knowing where on the board to place my tiles to get the highest points (thank you, mum). There was also a plentiful DVD collection and the beds even had electric blankets! In the morning time, the birds congregated impatiently on the balcony, adamant that they wouldn’t leave until they were fed. The magpies were the most aggressive! The more we fed them, the more birds appeared. It was surreal. On the coffee table there was a little diary where people who had stayed there before wrote about their experiences. It seemed that everyone who had stayed there found it to be a truly magical place.
In Denmark, we did the Tree Top Walk in the Valley of the Giants. If you’re squeamish with heights, or walking on rickety steel bridges, then perhaps this is not for you as this attraction incorporates both. The Tree Top Walk was wheelchair accessible, although I did find myself wondering how safe it would’ve been in my normal everyday Storm powerchair as opposed to the fold-up one I was using in Australia; the bridges buckled a little under the weight of my skimpy powerchair and the bridge itself was narrow – little wider than the wheelchair . As you walk up the bridge, you can see the magnificent trees below you. Some of them are enormous. One thing I noticed, as I observed in the John Forrest National Park, that in winter many trees lose their bark as well as their leaves. Some of the trees were also black, scorched from the hot sun during the previous summer.
To complete our road trip, on the Friday night we stayed in Margaret River. The accommodation was not as nice as the Green Leaves (and after staying there, I don’t think that any accommodation will measure up ever again). It was a long three hour drive from Denmark, so to break up the journey we simply had to stop in to a cheese factory, a toffee factory, the Margaret River Chocolate Factory (imagine me a la Homer Simpson in The Land of Chocolate) and various little wineries (only samples, mind: Alex was driving. Takeaway was bought, however, in some places!). We didn’t get to explore much of the outdoors that evening as it was lashing rain but still it seemed a nice little place. The next morning we saw massive swells in the sea. Not exactly safe for surfing!
One thing I I had been looking forward to that ended up being a massive disappointment was the Bus Tour of Perth. It was ridiculously expensive for what it was ($150 or approximately €100 for three adults and two kids). When I looked at it online, I had visions of it being somewhat interactive like the Dublin City tours. I’ve never been on one but I’ve seen them whizzing past Trinity College, with an animated tour guide giving live commentary. On the Perth tour bus, however, the commentary is delivered via headphones, which makes for an interesting yet solitary experience. We sat on the top deck so that we could see everything but were absolutely freezing by the end of the two hour tour. For the last section of the tour, we sat downstairs. When I was sitting in my wheelchair in the designated space, I noticed that the slot for my headphones was located approximately fifty centimetres above my head – not accessible unless you’re Stretch Armstrong or you have somebody with you (perhaps disabled people in Australia don’t travel alone? I don’t know).
I can honestly say that I got to see everything I wanted to see, including the truly beautiful Rottnest Island. What was not so beautiful, alas, was the ferry ride on the way over and back. I felt truly pathetic, as the ride only lasted forty-five minutes each way, but I can now say that I know the real meaning of ‘choppy’. At one stage it felt like I was being thrashed around in an oversized washing machine. Blood-y hell. Reader, I am not ashamed to say that I puked, and dry-heaved, quite a lot in those forty-five minutes. You would need a stomach of steel not to feel a little unwell. It was worthwhile, thankfully. It is such a beautiful, laid-back place, dissimilar to any of the other places we visited. The main mode of transport is the humble bicycle and my heart swelled with pride watching little and big Ali cycle approximately fifteen kilometres together, side by side. On the island, I saw my first ever live quokka. They rambled all over the islands, waiting for you to take selfies with them.
We packed so much into our five and a half weeks that even still, my body is still trying to regulate itself. From going to the ‘Gold Class’ cinema in Joonalup to bowling, we were rarely sitting around doing nothing. One evening we took a boat tour around the Perth basin and Ali even got to ‘drive’ the boat for a few minutes. Quad-biking across the sand dunes in Lancelin was a particularly exhilarating experience. It was tremendous fun. We were guided across the dunes by professional guides who led us down a couple of particularly steep slopes (the first one came rather by surprise and I’d say you could hear me screaming back here in Ireland!) I wouldn’t say it’s a wheelchair accessible activity though, which is why I sat in the car while the others went sandboarding. It was definitely one of the highlights of the trip.
Even as I write this, I still can’t believe that I’m home from the dream holiday that I’d been mentally planning for nearly twenty years. Although I missed home (specifically, the people at home) it was still hard to say goodbye to Alex and the country which will always have a piece my heart. Now, although I love the bright evenings here (it got dark at six in the evening in Oz as it was winter) I find myself missing the sound of busy crickets, the sweet smell of eucalyptus and the open highways (freeways? Not sure what the difference is?) If this is something that’s on your bucket list, do it. You know the way that sometimes reality doesn’t live up to your dreams? Yes? This isn’t like that at all. It truly was a once-in-a-lifetime experience that I will never forget.
Finally ( and I write this paragraph specifically for my wobbly tribe) what worried me most prior to the trip was how we’d manage in the airports, especially in Dubai where our stopover was only two-and-a-half hours. I chickened out of taking my own electric chair, so I was in a manual chair in the airport. The service we got when we landed in Dubai both times was excellent. Really top class. The staff were amazing, pleasant and brought us to our connecting flight promptly, even offering to stop in duty-free on the way. I was searched in security by a female guard in a little private booth. When we arrived back into Dublin after our trip, I was helped off the plane and brought into arrivals by a member of staff in an airport chair. It took forty minutes for my own wheelchair to come out on the oversized luggage belt (it came out upside down). This is why many of us are nervous of flying with our wheelchairs!)
And now, back to writing and to reality… and to continuing the job hunt….
I’ve been trying to get out of the house more lately. It’s good for my mood and my mental health. Luckily, Tullamore town park is only around the corner from us so on Friday evening, Alison and I walked down, as we often do. I had read in the paper that there was to be a gathering that evening for families who had lost loved ones to suicide, and that those affected had been invited to bring a pair of shoes with them to represent those who had died so tragically. Thinking it’d be a tiny affair (Tullamore is no city) we bought a pair of runners to represent my childhood neighbour Paul and another childhood friend, Frank. When we arrived at the park, I was taken aback by the depressingly sizable crowd in front of us. I had explained to Alison that we were honouring those who had died.
“Like my nannies?” she’d asked. (She loves hearing about her nannies).
“Er, not exactly,” I replied. What the hell was I doing, bringing a child to this event? “We’re remembering people who died because they were just tired of life. There’s sickness of the body, and sickness of the mind. Sometimes your mind gets so sick that it believes it can’t get better… and sometimes it kills people.”
I reflected upon my pathetic explanation. Don’t explanations like mine only serve to perpetuate the problem, that we have become so ashamed to vocalise our feelings that sometimes we just… don’t? We don’t want to be a burden, so we spend day after day alone, saying nothing to anybody. We worry that we won’t be believed. Or we keep quiet because we know Mrs So-and-so is going through their own shit and she has it way worse. Whoever coined the phrase “first-world problems” should be shot.
As I listened to the prayers, my eye wandered to the line of shoes in front of me. The line was so long that I couldn’t see the end of it. That frightened me. These shoes belonged to people in our town – ordinary people with ordinary lives – who were living with a massive gap in their lives. Suddenly, I became overwhelmed with an emotion that almost suffocated me. It was sadness, mixed with pain and self-hatred. Suddenly I realised why I had subconsciously wanted to be there, even though I wasn’t representing an immediate family member.
I was representing… me.
It’s almost been five years since I had deep, suicidal thoughts. Five years since I took a handful of pills, despising my own cowardice when I couldn’t bring myself to take enough to kill myself. Five years since the night when I told my husband I didn’t love him and wouldn’t he be better off without me and didn’t Ali deserve better. Five years since I bashed and cut every inch of myself in a bout of self-hatred so inexplicable that I can’t explain it accurately now that I am calm. In my eyes, I had failed. I was a crap parent, and shite at my job. I felt constantly tired, even though “I only had one child”. Some people couldn’t even have children and here I was acting like an unbelievable knob, ungrateful for what I had. All I had wanted was to be dead.
And sitting there, looking at the shoes, part of the reason why suddenly occurred to me. We have distanced ourselves from each other. The cost of living is ridiculous, so in an average household both partners must work, often ludicrous hours. Where is the time to have a meaningless natter with your neighbours? And speaking of neighbours, we don’t know our neighbours anymore (stupid housing crisis). We keep ourselves to ourselves. My parents bought a house back in the ‘eighties and that was our forever home, but people can’t do that anymore. And we knew most of our neighbours; in fact, all of us kids had best friends who were also our neighbours. People are not able to put down roots: not those in houses where the rents are constantly climbing, and certainly not those in hostels or hotel rooms.
I began thinking: if things are so bad (and make no mistake – we are beyond crisis point here) then why are we too proud to reach out to each other? Why are we wasting time trying to pretend we have the perfect lives on social media when we need to be talking more, empathising more, encouraging each other more? When will we learn that the perfect life we aspire to has been airbrushed into existence, and that happiness is more important than perfection? And why, in spite of the “It’s ok to be not oks” and “mental health is real healths” are we still not taking it seriously?
I resolve to take mental health more seriously because those empty shoes frighten me. So let’s go for coffee. Come over for dinner, or chocolate – or both. If you ever need to chat, I will not judge. I will listen as best as I can.
Don’t assume that what you left unsaid will be heard. Trust me, people will be glad you said it.
It’s those unsaid words that haunt us the most in the silence.
You knocked on our doors wearing a smile,
Said that you wanted to talk for a while,
Assured us that you understood our pain
and that in trusting in you, we had everything to gain.
Then as the door closed with us safe behind
Did we really remain in your minds?
Could you really know what our smiles were hiding
As your manifestos through our letterboxes you were sliding?
Black eyes by a fist who wanted to show who was boss;
An empty cot owned by a mother suffering a loss;
A child who didn’t have breakfast that day;
A young man who can’t make those voices go away;
A lonely but beautiful lady who can’t seem to stop drinking –
When you were ringing those doorbells
What were you thinking?
How were you going to gain our trust
In an Ireland viewed by many as cold and unjust?
You could promise the moon and the stars
But we won’t believe you’re not running up your tab at the bar.
While you attest that things will change in your name
for many of us our reality stays the same,
We still struggle to keep the roofs over our heads
(the lucky of us that is – spare a thought for those in hostel beds),
while working our fingers down to the bone
and spending our evenings feeling overwhelmed and alone.
And that – mo chara – is the biggest problem right there –
That people these days just don’t seem to care!
Young people in nursing homes, families with nothing to eat,
Thousands of people out on the street!
For a country obsessed with unity, all we do is divide –
Never has the gap between ‘rich’ and ‘poor’ been so wide.
And it’s so hard to believe that the country is broke
When the powers that be get six-figure paychecks
(unlike ordinary folk).
So if you are in government, and you’re reading this crap,
It’s time to stop letting Bertie and Enda take the rap,
The future of this country rests in your hands
And we’re counting on you to meet our demands.
Don’t say it’s impossible, that your hands are tied,
Instead think of the tears your people have cried.
One person can’t change the world, it’s true,
But if you speak up for the voiceless, others will too
And maybe, just maybe, our faith in Ireland will renew.
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.