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Opinion: Living with a disability in Ireland - a relentless dystopian nightmare

The daily life of a person with a disability is not aided by Irish society, writes Tom Clonan.

Tom Clonan Security specialist and columnist, TheJournal.ie

MY SON EOGHAN has a rare neuromuscular disease, Pelizaeus Merzbacher Disease (PMD). He had a normal delivery as a baby and reached all of his developmental milestones until he was 18 months old.

At a year and a half, Eoghan stopped walking and reverted to crawling. He developed a tremor in his little hands. We thought he had a brain tumour. We were terrified.

Eoghan was seen by a phalanx of medical professionals – wonderful, caring, passionate doctors and clinicians – until we got our diagnosis of PMD.

Like Alice, that’s when we, as a family, went through the looking glass and entered the parallel universe – a relentless dystopian nightmare – that is the experience of carers and people with disabilities in Ireland.

Eoghan is now 17 years old. We have had to fight for everything for him over the years. 

We have battled with the HSE, the Department of Health, the Department of Social Protection, the Department of Education for everything from wheelchairs to large textbooks to an SNA to allow him to go to school.

We have had to fight for a spinal operation to correct his severe scoliosis – that was putting pressure on his lungs and heart to the extent that he was an anaesthetic risk for surgery.

Throughout all of this – over the last 14 years – the medics have been extraordinary. Everyone from surgeons, through to nurses, speech therapists, physiotherapists and occupational therapists have treated Eoghan with the utmost humanity and love.

But during this period we have also witnessed the incremental destruction of medical services for people with disabilities through austerity cuts and the ongoing recruitment and retention crisis in Irish medicine.

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Throughout all of this, Eoghan has been stoic. He has accepted all of the pain, discomfort and suffering with grace and a mischievous smile. He gets enormous support and assistance in this regard from his service dog and constant companion, Duke.

But, there are bad days. Days where Irish institutions, organisations and systems are appallingly discriminatory, arrogant, patronising and hurtful.

Wednesday of last week was one of those days.

‘Disappointed, but not surprised’

As is the case every year, we book our family holiday through Aer Lingus. We are required to inform its Special Assistance by email that we intend to travel with a wheelchair and with Eoghan’s service dog, Duke.

According to Aer Lingus’s own policy – similar to that of other airlines – for service dogs and guide dogs to travel, their requirements seem straightforward. In the case of guide dogs for the blind, the dog must have documentation certifying accreditation by the International Guide Dog Federation, (IGDF).

For service dogs like Duke, the dog must have documentation certifying accreditation by Assistance Dogs International (ADI). Duke is accredited by ADI and the relevant document is attached to his pet passport. The airlines also insist that the dog wear his special harness and lead during the flight on board the aircraft.

So far so simple, so far so good. But, despite these clear parameters for travel, our experience with Aer Lingus over the last six years has been typical of Irish organisational culture when it comes to disability – inconsistent, capricious, discriminatory and often cruel.  

In 2014, when I informed them of our intention to travel, Special Assistance at Aer Lingus demanded that we provide – at the point of travel – a letter signed by a medical professional certifying Eoghan’s medical condition and outlining the medical necessity of being accompanied by his service dog.

I was a bit taken aback. Disappointed, but not surprised, as I have become accustomed – as a parent and carer – to have to grovel and/or fight for every step of Eoghan’s participation in every day, normal life.

So, we got a letter from our paediatric neurologist as requested by Aer Lingus. We presented the letter at the point of departure at Dublin Airport on the day of travel in June 2014. There were no issues.

In 2015, after notifying Aer Lingus of our intention to travel, Special Assistance informed us that we had to produce another letter – as it had to be less than one year old.  So, we had to go back to our – eternally patient – paediatric neurologist to get the updated letter. We presented it at the point of departure in June 2015 in Dublin Airport and were allowed to board the aircraft.

In 2016, when we notified Aer Lingus of our intention to travel Special Assistance issued us with a new set of demands.  They demanded to know – in addition to the certification by ADI of Duke’s status as a service dog – the following; booking number, name of guest, breed, weight, height and medical condition of the guest.

I’m assuming that despite their typo they wanted to know the breed, height and weight of the dog, not Eoghan.

They also demanded – for the first time – details about the wheelchair. The weight, height and width of the wheelchair. We supplied all of this information and were allowed to board the aircraft, having produced the medical letter at the point of travel.

‘Disabled by Irish institutions’

In 2017, when we informed Aer Lingus of our intention to travel, they demanded that all of the documentation be uploaded, scanned or otherwise copied to them in advance of travel. Despite reservations on my part about sending Aer Lingus details of my son’s medical condition, I agreed to do so and complied.

In June 2017, we were also required to produce the same medical documentation and certification at the point of travel in Dublin Airport. Eoghan boarded the Aer Lingus flight and flew to Barcelona. During the flight, Aer Lingus however, “mislaid” his wheelchair and he was left stranded on the aircraft at Barcelona airport.

At midnight, a frustrated member of the cabin crew suggested that we carry him off the aircraft – presumably by piggyback – through the terminal building and to continue our journey without the wheelchair, until it could be “located”.  

Luckily for us, after over an hour, his wheelchair was found.

In 2018, we informed Aer Lingus, yet again, of our intention to travel and complied with their requirement to supply the medical letter in support of Eoghan’s service dog and the ADI certification.

Last week, having informed Aer Lingus of our intention to travel this month, I got another novel request from Special Assistance. In addition to all of the other requirements as before I was asked to set out in writing “the services” that Duke the dog “provides” in-flight.

I was also asked – somewhat cryptically – to inform Aer Lingus of the age of the dog. It was the last straw. In desperation, I took to Twitter and complained about the annual inconsistencies.

Don’t get me wrong. I’m a great fan of the airline. Many of my former colleagues in the Defence Forces are pilots for Aer Lingus. It is a great company – with great staff. One of whom made direct contact with me to smooth out this year’s flight on our family holiday.

While I was involved in all of this drama last week, Eoghan tried to go to the cinema. He could not board the Dart on his wheelchair as there were no staff at the station. He tried to get a Dublin Bus – but each bus had a buggy occupying the wheelchair space.

He waited for an hour and a half at the bus stop and got soaked to the skin in the rain. He eventually came home. When I asked him what had happened, his hands fluttered up with an intention tremor as he tried to explain his frustration. He then burst into tears.

Irish people are great but Irish society is a cold place for our children and young adults who are unique by way of intellectual or physical differences.

My son does not identify as disabled. He identifies as a young man who wants to travel and see the world. He identifies as a teenager who wants to go to the movies – just like everyone else.

He is disabled by Irish institutions, organisations, and systems that repeatedly humiliate, hurt and discriminate against carers and persons like my son. I’ve had enough – we need a radical, rights-based approach to equality in Ireland as it applies to citizens like Eoghan.

I appreciate how lucky we are as a family in our current Republic – to have a roof over our heads and a wonderful, exceptional community of friends and neighbours who support us in our everyday battles.  But, there are lots of other young adults like Eoghan out there – who have more profound challenges and who do not have the supports or the public platform that I am privileged to have.

It is for them that I am writing this account of a day in the life of a person with a disability. I would ask all Irish companies, organisations and institutions to be able for equality and to radically overhaul their attitudes to “disability”. 

 Aer Lingus issued the following statement to TheJournal.ie.

“At Aer Lingus, the safety of our guests is our number one priority. The procedures we have in place with regards to accommodating guests who require special assistance are to ensure our teams on the ground and in the air are fully informed of any guest’s needs and can offer the necessary care to provide a comfortable and positive travel experience.

“For guests who require assistance when travelling with Aer Lingus, we ask that they contact our Special Assistance team and complete a designated form. For guests with disabilities, we may require a medical professional to complete a medical information form, depending on the level of care they require during travel. For those travelling with an assistance dog, we require the relevant documentation confirming that the dog is affiliated to one of the following organisations: International Guide Dog Federation, Assistance Dogs International. Guests are required to contact our Special Assistance team 48 hours in advance of travel with suitable documentation.’’ 

Dr Tom Clonan is a former Captain in the Irish armed forces. He is a security analyst and academic, lecturing in the School of Media in DIT.

You can follow him on Twitter here.     

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About the author:

Tom Clonan  / Security specialist and columnist, TheJournal.ie

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