Life should be about living, not merely existing – in or out of a wheelchair

Wednesday morning, some time after 1am, and the fire alarm has gone off in my block of apartments. Eventually, my street is evacuated. The fire was in an underground car park. Neighbours, and the fire service, came to check on me and try to help me into my wheelchair.

Getting in touch with the HSE or a service provider requires a serious amount of stamina. They check my version of events with the management company.

Therein begins the infantilisation.

The form filling with the HSE disability manager brings a sense of unease. Every two years this process is humiliating. My cerebral palsy hasn’t changed. Insensitive questions about the toilet extend themselves to dressing, showering and cooking. These innocuous questions are used as a marker to gauge how much support is needed. Enjoyment, safety, comfort or pleasure; there are no questions on the form that cover these areas.

‘I know that I have a disability. It’s impossible to forget’

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‘If video gaming is a disease, what’s next: excessive sunbathing?’

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Forget the puréed carrots, the BLW (baby-led weaning) approach is the way to go

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The paradox of ‘safer’ childbirth

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Activism stole my best years. It also sucked the life out of a lot of my friends and peers. 2018 for me is about attending the anniversary masses of the disability activists who died during the past few years. Living alone brings many, many, benefits that were once only dreams. In order to contextualise; my package of support from the HSE is 84 hours a week, which equates to 336 hours per month. My hours of support finish at 11pm.

Until the fire, night-time was my private, sacred time. Most people with disabilities don’t have this kind of package. There is guilt attached.

On three occasions in the middle of winter I lay on the street outside Dáil Éireann. These were efforts to ensure access to basic service provision for disabled people continued. Namely independent living. This means having services in your home rather than living in an institution. Any notion of adrenaline or glamour associated with this form of direct action fades fast.

Very quickly, the realisation sets in that you’re maintaining “a service” which is quite different to controlling “your service”.

The infrastructure for disability services is appalling in this country. There are 2,200 organisations/advocacy services and service providers all claiming to know and understand the reality of living with a disability.

It is worth noting that these organisations are not owned or controlled by people who live with the reality of disability.

Public transport

Access to public transport remains ad hoc and hugely problematic. One of my friends who has a significant disability was given the choice of two hours of support or a bed in a nursing home. Younger, disabled people in particular, living in a rural area, are further disadvantaged.

The delights of taking risks, moving away from the family home, going to gigs, are de rigueur for most young people. People with disabilities of any age don’t have this experience or choice.

Regardless of where I live, my human rights are eroded and considered by the State as being insignificant

These young people with significant disabilities have few or no support hours. Financial frugalism in the area of disability support packages leads to a chaotic and perilous service. This means quality of life is about existing; not living.

Getting up, eating, going to bed, if you’re lucky. The hours in between; the bits that you call your life, they don’t exist – at least not on this form.

The fallout from lack of services is loneliness, isolation and lack of participation. We don’t talk about loneliness, it comes with stigma and shame. Studying, working, travelling, that’s someone else’s life. Stigma brings its own set of complicated dynamics. None of my non-disabled peers know how my life works.

In the arts sector, it’s better not to expose this area of your life because you lose out on opportunities. The unspoken biases and silent prejudices become transparent to a trained eye. Using a lot of energy to minimise your needs, means there’s hardly anything left over to participate or offer to the wider community.

Recently Minister Finian McGrath went to the UN to mark Ireland's ratification of the Convention on the Rights of Persons with Disabilities (UNCRPD). The Government’s refusal to adopt the optional protocol, which allows people to make complaints to the UN, is no surprise.

This protocol would allow people with disabilities to make complaints about service provision in Ireland. The bizarre twist of fate means my rights are violated, while the HSE and other bodies are protected from complaints related to specific services for disabled people.

The question of freedom, autonomy and human rights is complicated. Regardless of where I live, my human rights are eroded and considered by the State as being insignificant.

The form is filled and I’m told I’m not going to get overnight cover.

The disability manager leaves with her form under her arm and I’m left looking out the window, worrying, waiting for the next fire evacuation.

Platform Series: Rosaleen McDonagh
1) He'd look for a kiss from his gypsy girl
2) Perniciousness of racism and ableism
3) Life should be about living, not existing
4) The disabled spoil the presentation
5) When will there be an official apology?
6) Theatre access for those with a disability
7) Believing disabled sexual assault victims
8) Marginalising disabled feminists
9) Use your vote for change