Stories/Lived Experiences
Author: Ross Coleman is a Translator, Writer and Disability Rights Activist from Dublin
“Ours is essentially a tragic age, so we refuse to take it tragically”, thus opens D.H Lawrence’s famous novel Lady Chatterley’s Lover, published in 1928 in which a bored unfulfilled housewife embarks on an affair with the gardener on her husband’s estate. Clifford Chatterley, Lawrence informs us, is a cripple, badly injured from serving in the front. Since his injury, he has become cold and unfeeling, absorbed in books and his intellect, only going outside to toot along in his electric bathchair. When I first read the book a few years ago, I dismissed it as a bygone relic of an ableist age. And yet, despite that, I was forced to admit a single harrowing fact: nothing has really changed.
I require a Personal Assistant (hereafter referred to as a PA) in order to help with daily tasks that I cannot do myself: getting dressed, going to the bathroom, showering. At the moment, my parents provide this support and have been providing it since I was born. If I want to go out, I either have to go out with my parents or just not go to the bathroom. Neither of these are desirable solutions. I should not expect, neither do I want, my parents to accompany me to every social function, but nor can I just not go to the bathroom.
The solution to this problem is very simple: a PA would allow me to live life on my own terms and give me the same choice and control over my life as my peers. My PA is not a carer, rather, they simply act as my arms and legs and perform tasks under my instruction. Unfortunately, access to this service is not a universal right. Provision of a PA is determined based on the (very scant) funding available. The resources for the services are so paltry that in some cases a person has only been able to get a PA because a person that was previously using the service has died. And even if a person does manage to get a service, hours are often limited. According to reports from the HSE, the average PA user only receives around 1-3 hours a day, with some users only receiving a measly forty minutes a day, barely enough to have a shower and eat breakfast.
Having given some background on the issue, I wish to focus the rest of this piece on the personal repercussions of not having a PA. One of the most difficult things about not having a PA is watching the impact it has on my parents. Ever since birth, they have been the ones offering me support, support that they still need to give me at the age of 24. My parents are physically not capable of providing the support anymore. Additionally, because my life is so closely bound to theirs in such a personal way, they have no lives of their own. It’s difficult on an emotional level as well. The traditional cycle of life, where children grow into rowdy teenagers and then into self-sufficient adults, is not, and cannot, be present where the child is still dependent on the parent. I’ve never had a blazing row with my parents or snuck out in the middle of the night. I’ve never had the freedom to make a wild decision and then suffer my parent’s wrath. I’ve had to play it safe.
Not having a PA not only curtails one’s freedom but also one’s development. Because I never had the chance to go out into the community, to go through that period of self-exploration as a teenager, I have a very stunted idea of self. I still struggle to identify what I like, what I don’t like, what types of people I like to hang out with. I’ve never been in a relationship. I’ve never gone away by myself. All of these experiences are a regular part of life that I and other disabled people are missing out on, simply because we do not have the supports that we need to live our life.
It is this poverty of experience that is most harrowing. Rather than investing in Personal Assistant Services, the state continues to pump funding into putting disabled people into nursing homes even though report after report has shown such practises to be completely inappropriate. Sometimes I come across articles in local newspapers about people in their 30s and 40s who are stuck in nursing homes due to lack of support. I often wonder: could that be? When my parents die, will I be shipped off to a nursing home and languish there, like some sort of invalid?
Perhaps the most egregious thing of all is that the State has signed on to provide these supports. The State ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2018, the last country in the EU to do so. Article 19 of this convention stipulates that disabled people have the right to live in the community and access the support needed to do so. Just before the pandemic, in November 2019, the sitting government passed a motion saying it supported enshrining the right to a PA into law. Yet, almost three years on very little has changed about the situation. For the most part, disabled people are still trapped in their homes and unable to lead active lives in the community. Sometimes I wonder will we ever see change or will I just be a 21st century Clifford Chatterley.
Ours is indeed a tragic age but the government refuse to take it tragically.