Personal Assistance Should Be a Right

(This article was first published in the Tullamore Tribune week ending 20 December 2019. Many thanks to Ger Scully, editor of the Tribune, for this).

On the 19 November 2019, the possibility of legislating for Personal Assistance as a legal right was debated by the Dáil. The motion was brought forward by Donegal TD Thomas Pringle from Independents For Change, who worked in collaboration with Independent Living Movement Ireland (ILMI) in promoting the right for disabled people to access Personal Assistance in Ireland.

 

The Personal Assistance Service and Independent Living are intertwined. In their truest form, Personal Assistants are not “carers”, nor do they have the right to make decisions on behalf of the disabled people they work for. A Personal Assistant has been defined by many as “my arms and my legs”, in other words, the role of a Personal Assistant is to assist with or perform tasks that the disabled person (known as a “Leader”) cannot do for him or herself. The Leader is considered to be the expert in their own needs and directs the Personal Assistant on what he/she wants done. When the service is delivered properly, the PA does not “look after” the Leader, but rather enables him or her to live a fulfilling life – enter employment, access education, enjoy social events and raise a family – depending on the Leader’s own life goals.

 

In theory, a Leader’s service is customised to suit his or her own lifestyle. However, in reality, only a select few disabled people in Ireland are enjoying the full benefits of Independent Living. Since the onset of the recession in 2008 the lack of financial resources, coupled with a growing demand for a Personal Assistant Service, has led to overmedicalised assessments and more stringent criteria, leaving many disabled people with little or no service. Emphasis has been placed on “high dependency needs” such as feeding, showering and dressing. While this might make sense to the powers that be, in reality this can lead to a depressingly low quality of life for the Leader concerned, being all dressed up and nowhere to go.

 

Many Leaders make a distinction between a “home-help” service and a PA service. A home help works to a rota provided by a care organisation and merely assists clients with basic tasks such as Personal Care and feeding. Often, a client has little or no say in what tasks they can be assisted with, nor do they have control over who delivers these tasks. It is not uncommon for a “client” to be assisted by many different people, and a disabled person might not know who is assisting them from one day to the next. Conversely, a Personal Assistant is recruited by the Leader themselves, and matching personalities, as well as a willingness to carry out certain tasks, is a crucial element to the success of any PA/Leader relationship.

 

The original intention behind the service was that the Leader could dictate what they wanted to do and when, just like every other person in this country. Moreover, the philosophy of independent living espouses that the Leader should choose who assists them, what they need assistance with, and when. A distinct benefit of the PA service is that it reduces our reliance on our family and friends so that we can enjoy a relationship as equals, not as “carer” and “cared for”.

 

However, in spite of the ratification of the United Nations Convention on the Rights of People with Disabilities (UNCPRD), Personal Assistant Services are not currently a right for disabled people in Ireland. Consequently, this leaves the service vulnerable to the constant threat of cutbacks, as the government illustrated in 2012 when it endeavoured to eradicate the entire service overnight. People power alone, in the form of demonstrations outside the Dáil saved the service, but the PA service in its current form is not allowing disabled people to enjoy a reasonable or enjoyable quality of life. A report published by ILMI in 2017 conveyed that nearly half of people in receipt of PA services were getting the equivalent of 45 minutes a day. This is entirely unacceptable and clearly illustrates the need to legislate for PA Services.

 

Therefore, the motion which was brought before the Dáil and subsequently passed unanimously was a hugely historic day for disabled people in Ireland. It heralded a shift away from the notion of disabled people as passive recipients of care to people who had human rights and who deserved access to the tools that enable them to participate equally in society. For the first time, Personal Assistance was debated in the Dáil using the language of rights, signalling a shift away from the misperception that disabled people are merely passive recipients of care.

 

Alas, although this small battle has been won (and how sweet the victory does taste!) the work for those who want equality for disabled people is far from over. We cannot afford to be complacent or to take anything for granted. Now is the time to educate people, to create awareness of the importance of our PA services and to ensure that our government delivers on its promise to make independent living a basic human right.

 

For more information on the ILMI #PASNOW Campaign, visit www.ilmi.ie or follow us on Facebook www.facebook.com/ILMIreland  or Twitter @ILMIreland

 

Remembering John Doyle

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).

Academic Essay: Discuss the challenges facing the Independent Living Movement since the onset of the recession

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.

 

 

 

Bibliography:

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

The Client (Short story)

 

 

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.

 

“Nuala?”

 

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.”

 

“Level five?”

 

“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.

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

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

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

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

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

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

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

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

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

 

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

Budget 2020 (Poem)

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.

(choice!
Oh choice!
What a luxury)

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

A Little Help

Dear whoever has the pleasure of reading this right now: forgive me for I have sinned; it has been almost two months since my last blog post. When I started college, I envisioned having more time to regale you all with trivial tales of my little life but being ever self-pushy and, well…me, that hasn’t happened. However I need to get this off my chest, otherwise I may implode.

I feel like I am living in a nightmare where everyone else is asleep but I am wide awake. I am slowly suffocating and there seems to be nothing I can do about it. Being in college for the last few months has confirmed to me that I live within a culture that constructs disability as a problem, that encourages us to blame ourselves for our shortcomings to deflect from the fact that we are oppressed and becoming increasingly voiceless.

Do you think I’ve lost the plot? I think so too.

For college, I decided to do my research essay on Independent Living in Ireland. May I say I wish I’d done it on something else, something I couldn’t give a crap about, because the more I read, the angrier I become. Sometimes I wonder would life be much easier if I didn’t know anything about the reality of Independent Living in Ireland. I wish I could shrug my shoulders, say ‘ah well, that’s just the way it is’.

But I can’t, so here I am.

Reader, I want you to think of your life as it is right now. Maybe you’re a student who studies hard during the week and parties harder at weekends. Perhaps you have the career you always dreamed of, one that brings you all over the world. You could be the proud parent of eight beautiful kids, secretly loving the chaos. Or maybe you’re a bit of a Lothario, with a different partner on your arm every ten minutes. It takes all sorts to  make this world. People with different views, dreams, outlooks, opinions. Everyone is different; that’s what makes us so interesting.

Now, imagine you only had control over your  life for forty-five minutes a day. Yup, forty-five minutes. Imagine you were the CEO of a multi-million euro company. How would you fly around the world to all your important meetings? Imagine you were a fun-loving, party-animal college student who had to go to bed at eight o’clock in the evening and get up at eight o’clock,  no exceptions.  Imagine being fully corpus mentis and expected to put up with an ‘expert’ who doesn’t know anything about you or your life making major decisions about how often you go to the toilet, how often you shower, what you can eat for your dinner.

Welcome to being disabled and needing assistance in 2019, and it’s like a parallel universe. Often it’s like looking at the world from inside a glass bubble, but not quite being able to reach it. It can get lonely in there, and suffocating. And no-one dares break that glass bubble in case someone gets hurt. It’s a world of risk assessments, of the professionals in the white coats, trying in vain to convince people that they truly believe in empowerment and equality. Oh, you can be empowered, so long as these experts are given the power to empower you. They will decide how much assistance you need based on some ticked boxes on a long form. If you have pride, this exercise will be particularly painful. Nobody likes to admit that they can’t do things by themselves. Isn’t the measure of a man/woman the ability to do things by himself/herself?

It’s best to be as compliant and agreeable as possible. No-one likes a troublemaker. And it’s not as though you making a stink is going to make any difference. Everyone knows what happened when Winston Smith from 1984 questioned the system. The system broke him, and in the end he was just grateful that Big Brother had saved his life, even though it was this system that made his life unbearable in the first place.

I fear I’m not making this point very well – Independent Living and freedom of choice is not a disability issue. It is a human rights issue, and one that effects every single one of us. How, you might ask. I don’t believe that ‘non-disabled’ people should support the disability movement just in case they become disabled one day, though I respect people who do have this mindset. I believe that if you don’t believe that the lives of disabled people are worth investing in, if you don’t quite think that every one of us, regardless of impairment, has something to offer, then you are perpetuating an idea of “them” and “us”.

I have postponed penning this blog for about a month now. I didn’t want to upset anyone. I don’t want to appear ungrateful for what I have. Then, this evening, I wondered how many people feel the same way I do, and are also afraid to say anything? How many of you out there are tired of fighting the system? How many of you have become apathetic because it’s really only a myth that the little people can win?

Apologies to those with screenreaders for the shouting here, but –  THESE ARE OUR LIVES.

We only get one life. Are we going to spend the rest of ours being told what to do, waiting to see who arrives to get us up out of bed? We don’t want to be taken care of, we want to be empowered, enabled! We are only going to live once so let’s fight for the things that really matter. Going for that cuppa and getting the cream bun that’s bad for us. Going clubbing and getting so roaring drunk that you end up with your head in the toilet at the end of the night. Taking that job in Dublin that you’ve always wanted. And above all, having the control and the assistance needed, as decided by you, to do those things that all of us should be taking for granted.

Until this is a reality, I don’t think we can afford to be complacent. After all, everyone needs a little help sometimes.

 

Shameless plug: Independent Living Movement Ireland are running a #PASNow Campaign, which calls for the definition and legislation of Personal Assistance. Achieving this would help bring Ireland in line with the UN Convention on the Rights of People with Disabilities. If you are interested, please visit http://www.ilmi.ie.

 

 

 

 

 

 

 

 

 

 

 

Silent voices (poem)

My heart is heavy, my head’s in a spin
As I try to make sense of this mess that we’re in.
Keep quiet you fool, says the voice I tend to ignore,
You’re turning into the most insufferable bore.
Droning on about rights, injustice and division
And how we still aspire to true independent living.

My high-pitched female voice grates on the ears
Of the suited pen pushers who never seem to hear,
and they even seem to relish the thought of those living in fear –
of the voices they’ve silenced down through the years.
And I wonder how long we can keep up the fight
When some of us are forced to end the day at eight at night,
And we know better than to dare to bite
The hand that feeds us.
We are so fucking grateful,
And like stupid obedient pups we will always be faithful
For the reward of the paltry scraps thrown in our direction.
While the powers that be rule our lives at their discretion.

Sometimes I think I go over the top,
And I wish I could get my racing mind to stop.
I wish I didn’t care about fairness, equality or rights
and that I didn’t feel pain in my heart day and night.
If I didn’t know better, I could live in a cloud
Where the voices in my heart wouldn’t sound so loud –
Just become a ‘yes man’ and simply nod my head
And turn off the brain that is now a mangled mess instead.

And on the worst days, when I’m exhausted through and through
I’m so tempted to shrug my shoulders and say “What can I do?”
Do my words make a difference to anything except my bruised ego,
And if we want people to listen, where should we go?
Had I known that gaining more knowledge would bring so much pain
Would I choose the same path had I my time again?

YES, YES, YES

I say yes to equality, for the right to my own mind,
To leaving the shackles of the past behind,
I say yes to being ‘the troublemaker’ who says what can’t be said,
I shout on behalf of those imprisoned in their bed.
I fear complacency and apathy, of accepting as the norm
The nitty-gritty of my life fitting on an A4 form.

My heavy heart’s on fire, my head spins with voices from the past
That say: If you want to change these things, you’d better act, and fast.
 

Progress is progress is progress…

So, it’s the end of 2018, which in some ways has felt like the longest year ever, and yet I remember sitting here writing last year’s post as if it were yesterday. It’s been a busy year, and here are just some of the highlights:

I did a “Begin your Novel” course in January, and I now am 26,000 words into Draft 2. Maybe I’ll finish it before I die.

I had a couple of job interviews, none of which resulted in me getting a job. May I respectfully ask how in the name of chocolate are you supposed to get experience if you need said experience to get a job? Grrr. Grrr.

I threw myself into promoting Independent Living, which I still think is one of the most important philosophies in the whole world, as it recognises disabled people as equal citizens with rights and choices. I blogged about it and also made a video as part of the #IndependentVoices campaign. I also got to work with some amazing ‘young’ people (I don’t believe I fall into this category anymore) and found out that the future of the Movement is in their capable hands. In September we had the launch of Independent Living Movement Ireland, formerly known as Center for Independent Living Ireland.

I applied to be on the UNCRPD supervisory committee, but was not selected. I did get an interview though which was a huge honour.

I gave two lectures to university students – one about the use of technology to students in NUIG via Skype and the other was about parenthood and disability to UCD students (which was a bit impromptu as I stood in at the last minute for a friend who couldn’t make it). Nerve-wracking to say the least.

I wrote an open letter to An Taoiseach Leo Varadkar which was published in the Tullamore Tribune and also read out on Dublin South FM (Ger Scully and Sean O’Kelly, if you’re reading this, many thanks).

I started the Certificate of Disability Studies in NUI Maynooth in October, arrogantly thinking it’d be a piece of cake only to find it’s actually pretty intense with a lot of work and reading involved – oops! It’s so much more than getting the piece of paper for me, though. I want to understand the roots of the oppression of disabled people so that I know how to fight against it.  That said, I need  to stop speaking out in class. I’m coming across as a know-it-all and I will find myself getting beaten up for my lunch money. (If I don’t pass it, I may cry)

I’ve semi-committed to writing another monologue in the New Year with the talented Peter Kearns (Once this course is finished, though – my head is melted)!! Hopefully it materialises.

Oh, and I’m kind of doing some driving lessons! Think the instructor is a little dubious as to whether I can actually do it or not… only time will tell! Fasten your seatbelts!

And finally, I just about managed to keep this blog active (though don’t expect too much before my course finishes in April. Three essays and a group presentation will eat my time). Thanks to all my loyal followers for liking and sharing this pile of drivel. Your cheques are in the post!

Best wishes for 2019! xx