45 mins support per day is not enough for a decent quality of life

By Sarah Fitzgerald

Since 2008, disability services have been ravaged by cutbacks, and many services, including the Personal Assistant Service, have become over-medicalised.

In the words of one of my former mentors Martin Naughton, a founder of the independent living movement, disabled people are traditionally viewed as people “to be cared for rather than to be cared about.” However, disabled people should have the right to make real choices that affect their lives, including where they live and who they live with.

At the moment, one of the most serious issues affecting disabled people is that many disabled people are living in institutions and in the family home. This is despite the fact that under Article 19 of the UN’s Convention on the Rights of People with Disabilities, disabled people should have the right to access housing and the services they require to live independently.

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Another issue is that Personal Assistance (PA) is grossly misunderstood in Ireland. The service is supposedly controlled by disabled people themselves, but according to research in 2017 a mere 2,200 people were accessing PA services in Ireland. Also, it was estimated that 44% of these received the equivalent of a mere 45 minutes a day. This is not nearly enough time to enable a disabled person to access a decent quality of life – employment, education and social activities.

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In 2016, I became involved with what is today known as the ILMI. It was shortly after Martin Naughton died and I was invited to join a group of disabled activists from across Ireland to organise a memorial event for Martin and other disability activists who had passed away. This event became a catalyst in reigniting the disability movement in Ireland. I learned the benefits of comraderie in a human rights movement and I felt at home. I had the privilege of working with seasoned disability activists, including the late John Doyle.

After the event, I was invited to join the ILMI’s board and I officially joined in April 2018.

The ILMI is a disabled people’s organisation which means that the core decisions are made by disabled people themselves. We are the experts in our own needs and we believe that solidarity among disabled people is central to the building of a movement.

I love the way that being involved with the ILMI feels like home, I am among people who realise that we are not broken, but it is society that needs to be fixed. We welcome membership from like-minded disabled people who want to work towards a fairer society for everybody.

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The Irish advisory committee of the UN Convention on the Rights of Persons with Disabilities will be soon reporting its findings to the UN and I hope that its contents are taken seriously and that improvements are made in order to allow disabled people to enjoy their rights as equal citizens.

I would also love to see more younger people becoming involved and to bring a fresh perspective to the movement.

Although there have been some improvements, issues such as Personal Assistance continue to deter disabled people from living their best lives. Going forward, we need to legislate for Personal Assistance to ensure that the service is protected from further cutbacks in the future.

WRITER & ACTIVIST

Sarah Fitzgerald is a mother, writer and blogger. Locally, she is a member of the Offaly Disability Equality Network, and at national level, she is secretary of the board of Independent Living Movement Ireland. She blogs at: wobblyyummymummy.com