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Twenty-five years ago a few pals were having an overnight demonstration on Kildare Street to get funding for a personal assistant service. We were high on adrenaline and ambition. We were young, naive and somewhat brazen.
At a much broader level, Irish society was changing and we as young ones and young fellas with impairments wanted to be part of the new Ireland. Previously, many of us had spent time in children’s residential settings and nursing homes. Historically, we watched a previous generation move through a system of institutionalisation, segregated education and living lives that lacked dignity, autonomy and individuality. These people had no choices or rights over the basic decisions of everyday living. The zeitgeist currently calls for atonement with regards to people who were in various institutions. Many generations of disabled and deaf people are part of that roll call. The cruelty, coercion and abuse that disabled and deaf people lived with is hardly acknowledged.
In 2022, the personal assistant service is 25 years old.
Having had the privilege of being one of the few disabled women or Travellers to ascertain a place in university, my next task was to find practical ways of navigating that environment. For the first three years, most days were spent with my coat on, regardless of the temperature in those lecture halls. Lunch didn’t happen. Going to the toilet was very problematic. Eating and drinking Monday to Friday from 9am to 7pm was not an option. Consumption of food or liquid would mean the need for support in the bathroom. There was none. Towards the end of third year, my life was miserable, the practical elements of taking notes or getting books from the library were out of reach.
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Consumed with surviving meant there was very little opportunity or confidence to make friends. My nervous breakdown happened, then my kidneys got damaged and college was beginning to look and feel impossible. My pals with impairments had similar issues, albeit in work or being dependent on family members for personal support. Our lives were very stressful.
To want to live independently was understood as a ridiculous notion. A care package and personalised budgets were deemed something that we could not be trusted with managing and controlling. The institutions were never scrutinised in the same way, on how they spent their budgets. Yet, most of us had poor quality of life and less value by way of comfort and freedom. Progress is always incremental.
Twenty-five years on, my life veered in ways that were unimaginable. Having a personal, professional and family life where my PA service is invisible has made the journey exceptional. The compromises were many and often heartbreaking. Interviewing people to work with me often meant outing myself and my ethnicity. On four occasions candidates told me they couldn’t work with a Traveller. This dilemma was similar to my lesbian, gay, queer and trans friends with impairments. Those private moments of pain added layers of more internalised shame. The view that people with impairments are homogenous is somewhat ridiculous. The joy of a personal assistant service is that it’s built by you, around you and only for you. The honouring of disabled lives in all our splendour of diversity is a core part of the ethos of the Independent Living movement.
A bit like the feminist mantra, the personal becomes political, Independent Living is both abstract and practical. There are various models related to Independent Living. These models are usually a way to integrate disability issues into public health policy. For me, the human rights model works. It’s rights based, inclusive of diversity related to gender, impairment, sexuality, race and ethnicity. It is flexible and not western centric.
Twenty-five years on, the Department of Health and the Department of Children, Equality, Disability, Integration and Youth are oscillating about where to place disability policy. Ireland continues the delay in ratifying the Optional Protocol as part of the UN Convention on the Rights of Persons with Disabilities. The 2021 Ombudsman report, Wasted Lives, stated that 1,300 disabled people under 65 are living in nursing homes due to lack of support packages to employ personal assistants. Independent representative Advocacy services for disabled people will become more essential than ever with the commencement of the Assisted Decision Making Act. The right to advocacy is identified in health acts but there is no statutory provision or recognition of advocates. Each annual budget brings fear. The disability sector is always a target.
The PA service is by and large dominated by low-paid, migrant female workers. All these factors continue to undermine people with impairments and disrespect the wider disability sector. It must be remembered that personal assistants showed up to work during Covid. Saving many lives, including my own.
In reflective moments, my emotions get overwhelmed and mixed up with my politics. The ever evolving philosophy of Independent Living is both exciting and challenging. The opportunity and good fortune to work in Pavee Point shaped me. Having travelled to South Africa, Australia and places in between, rounded me. Unbeknown to me, in the crowd on the night of October 14‚ 2015, my PA staff walked in solidarity with my community on the Glenamuck Road at the vigil for the 10 Travellers who died. It’s a precarious way to live your life. Nonetheless, important. This struggle for adequate support packages is constant and relentless.