Tuesday 16 January 2018

'People with disabilities are people - we deserve the same choices and the same respect'

To mark International Day of Persons with Disabilities, our reporter spoke to members of the disabled community to see if Ireland is becoming more inclusive

Jobseeker: Maria McCabe (26), lives with spina bifida Photo: Suzanne Collins
Jobseeker: Maria McCabe (26), lives with spina bifida Photo: Suzanne Collins
Adapting: Vivian Rath (34), lives with kyphoscoliosis Photo: Disability Federation of Ireland

Áilín Quinlan

It was a proud moment for Vivian Rath when he heard that a neighbour's son aspired to be like him when he grew up. A qualified pharmacologist currently working towards his PhD, Vivian was diagnosed with a spinal cord tumour at age three, which left him with a severe form of scoliosis, kyphoscoliosis, or excessive curvature of the spine.

The 34-year-old suffers from uncontrolled asthma, has significantly reduced mobility, and is shorter in stature than he would otherwise have been.

Despite many setbacks, however, Vivian manages to live a physically and intellectually active life, something which was spotted by a sharp-eyed young neighbour. "A woman whose son has a physical disability recently told me that her 10-year-old son said he wanted to be like me when he grows up; he wanted to have a scooter, drive a specially adapted car, go to college and get a job.

"That was a very proud moment for me," says Trinity College researcher Vivian, whose doctorate focuses on the social experiences of third-level students with disabilities.

Adapting: Vivian Rath (34), lives with kyphoscoliosis Photo: Disability Federation of Ireland
Adapting: Vivian Rath (34), lives with kyphoscoliosis Photo: Disability Federation of Ireland

Vivian explains that his disability has thrown many blocks in his path. He was forced to give up his job as assistant to the vice president of UCD in 2012, several hobbies, as well as his membership of the public-speaking club Toastmasters after he developed uncontrolled asthma, characterised by aggressive flare-ups, and treated by high doses of steroids which in turn disrupted his sleep, stomach and mood.

Vivian eventually had to move home to Gorey, Co Wexford, to live with his parents Pat and Kate, both in their 60s.

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He is currently working on making the family home more disability friendly with an accessible bathroom and bedroom, and is in the process of navigating his way through a complex maze of grants and support applications.

"I don't feel that I am defined by my disability, I think I am defined by what I do about it," says Vivian.

"What has really been important is sticking to routines and learning to adapt and being able to adapt, and having the discipline to comply with the requirements of my condition as regards medication."

Since 1992, the United Nations International Day of Persons with Disabilities (IDPD) has been celebrated annually on December 3 around the world. This year's theme focused on building a more inclusive and equitable world for people with disability.

Jobseeker: Maria McCabe (26), lives with spina bifida Photo: Suzanne Collins
Jobseeker: Maria McCabe (26), lives with spina bifida Photo: Suzanne Collins

Ireland has signed the United Nations Convention on the Rights of Persons with Disabilities (CRPD), a human rights convention written by and for people with disabilities which sets a standard that people with disabilities are entitled to all the human rights that people without disabilities enjoy.

However, this country has not yet ratified the convention, which means to make a promise in international law that the State will ensure its laws and policies live up to the standard set by the CRPD. Ireland is the only state in the EU that has not ratified the CRPD.

"The fact that we haven't yet ratified means we are sending a signal to people with disabilities and across society that people with disabilities are separate, different and not fully equal Irish citizens," says senator John Dolan, CEO of the Disability Federation of Ireland.

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Although Vivian is clearly very adept at managing his environment, there are still things that frustrate him, such as restrictions around the availability of public transport: "I am required to book a train or bus 24 hours in advance so that they have advance notice of my arrival. You have to fight for very ordinary things. I want to be included in society and not excluded because of my disability."

For qualified book-keeper Gavin Allman (36), planning ahead is a crucial part of life. Gavin, who lives near Johnstown, Co Kilkenny, has Wolfram Syndrome, a rare genetic condition affecting one in about 770,000 people.

"I have diabetes, impaired hearing and am legally blind," he explains, adding that other health issues include balance difficulties, chronic fatigue and bladder problems.

"It's debilitating and very complicated; yet a lot of people haven't heard about Wolfram Syndrome," says Gavin, one of nearly 600,000 people living in Ireland with a disability, according to CSO statistics - or 13pc of the population.

In fact, in 2017 it's expected that more than 56,000 people will be diagnosed with a disability for the first time.

Gavin can't work because of his condition, but he manages his day-to-day life through considerable advance planning.

"My condition also affects my social life because of the hearing impairment and also I am advised not to consume fluid after 7pm because of my bladder problem. It's hard to socialise under those circumstances. It's a disruptive condition," says Gavin, who had the condition since he was born but was not diagnosed until his mid-20s.

He too is often frustrated by his dependence on an inadequate system of public transport.

"The lack of frequency of buses makes life difficult - for example, my local bus to Kilkenny goes either at 8am or 2pm," he says, adding that while people are often extremely helpful when he discloses that he has a severe condition, they are generally not particularly aware of the restrictions a disability can impose.

The Anne Sullivan Foundation, which represents people like Gavin, wants more priority given to deafblindness, which spokeswoman Catherine MacDonald describes as a debilitating condition that affects communication, mobility, independence and socialising. She argues that it has not been recognised in Ireland to the same extent as other disabilities.

"It doesn't get great mention and does not attract the same attention in terms of policy documents, advice and legislation from the Government. We feel there is not enough focus on deafblindness as a disability," she says.

Recent figures show that while there are 1,749 people in Ireland with severe hearing and vision impairment, there are 10,000 people who have some degree of impaired hearing and vision.

Maria McCabe (26), has spina bifida, a medical condition which results from the failure of the spinal column to form properly in the womb. She is currently working as a typist on an employment scheme in her hometown of Drogheda, Co Louth.

Maria, who is a wheelchair user, recently developed a state-of-the-art app, which displays which of the buildings in the town are wheelchair-accessible, and has applied for funding to expand the app to take in towns all over Ireland.

"I'd love a full-time permanent job, because as long as the workplace was physically accessible to a wheelchair it would be okay," she says, adding that she loves art of any kind. She holds an art and business degree, and says it is her dream to find employment in a museum or art gallery, after previously working in a gallery in the town.

However, figures show that disability affects a person's employment opportunities, with just 30pc of people with disability active in the labour force, according to the 2011 Census.

But Maria says she's not one to allow her health get in her way. "I have always had the attitude that I will not let my condition get in my way. To me it's not an issue and it shouldn't be an issue to anyone else," she says.

"People with disabilities are people. They deserve the same choices and the same respect as other people."

Irish Independent

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