I live a truly dreary existence. All I’m asking for is the same rights as all of you

The State must fulfil its promise to provide people with disabilities with personal assistants

How are you meant to have a fulfilling life if you can only use your arms and legs for only a few hours a day? Photograph: iStock

How are you meant to have a fulfilling life if you can only use your arms and legs for only a few hours a day? Photograph: iStock

 

I wake up and get dressed. I log on to my laptop and spend the next few hours glued to my screen. I look out the window. The weather is nice and the sun is peering through the blinds. It’d be really nice to go outside.

I can’t, of course.

The rest of the day passes in a haze of lunch, cups of tea and Zoom meetings.

Nightfall comes. I eat my dinner and trudge up to bed. I listen to a bit of an audiobook before falling asleep and doing it all over again the next day.

It truly is a dreary existence.

Thank God that things are finally opening up, right?

As a disabled person, I often have no choice but to stay indoors because of a lack of personal-assistant services

This has been my life since long before any lockdown. As a disabled person, I often have no choice but to stay indoors because of a lack of personal-assistant services. Because of my disability, I require help with basic living tasks: going to the bathroom, getting dressed, making a meal and so on. At the moment, I must rely on my parents for this support. In practice, this means that either my parents must accompany me when I go out or I simply don’t go to the bathroom. Neither of these is a desirable solution. As a young adult, I do not want my parents to accompany me to every social function. Nor should they have to. I deserve the right to have a social life, independent from them. Yet I can hardly go out and not use the bathroom for hours. I have done so before with disastrous consequences.

The solution to this problem is very simple. A personal assistant would give me and other disabled people the freedom to live our own lives on our own terms without the need to rely on our family and friends. The personal assistant does not care for the disabled person, nor do they make sure that the disabled person is “safe”. The function of a personal assistant is to act as the disabled person’s arms and legs, to do the tasks that a disabled person cannot do for themselves. This empowers the disabled person and allows them access to the same choices and freedoms as their non-disabled peers.

How are you meant to have a fulfilling life if you can only use your arms and legs for a few hours a day?

Unfortunately, there is no legal right to a personal assistant in this country, and the service is chronically underfunded. According to HSE figures, 65 per cent of personal-assistant-service users received less than 10 hours of support a week. How are you meant to have a fulfilling life if you can only use your arms and legs for a few hours a day? And even if one gets some personal-assistant-service hours, the service is dictated by funding. I live in constant fear that my service will be revoked as a result of budget cuts. The ability to live an independent life is a human right and one that should not be dependent on budget restraints.

Personal-assistant services are mentioned in article 19 of the United Nations Convention on the Rights of Persons with Disabilities, which stipulates that disabled people have a right to live in the community and have a right to access the services that would allow them to do so.

The Government has ratified this agreement and therefore must make good on its promise. Disabled people have been campaigning for a personal-assistant service since the 1990s. In 2012 they had to protest outside the Dáil in order to prevent the government from cutting essential personal-assistant services.

Commentators have raised concerns about the impact of the pandemic on young people. I have experienced this for most of my teenage years. My sense of self has been stunted

Throughout this crisis, commentators have raised concerns about the impact of the pandemic on young people, how they are missing out on formative experiences, the blow to their mental health. I have experienced this for most of my teenage years. My sense of self has been stunted. Because of inadequate Government support, I have not been able to go out into the community, have experiences and discover who I am, what my tastes are. This is why personal-assistant services are so vital: they enable disabled people to become who they truly are.

In November 2019 the sitting government passed a motion that would make personal-assistant services a legal right. This motion was adopted by all present.

Unfortunately, with the election and coronavirus, progress on this Bill has stalled. With the Government’s record on disability rights, I fear that this Bill will be forgotten about and that disabled people will be confined to their homes for the rest of their lives. Enough is enough. The Government has had a taste of our lives. It must give us our rights so that we can live our lives.

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