What's it like living with a disability and trying to contend with an officialdom that does not accept that your special needs should be met as of right? Fintan O'Toole tells the stories of Tom Battersby, Eileen Daly, Edel Carey and the McNabbs
Tom Battersby is the kind of man that senior citizens are supposed to be: active, engaged, an asset to his community of Palmerstown in west Dublin. After his retirement, he threw himself into voluntary work, helping to run the local credit union, running a FÁS scheme and generally being around to help out. At the age of 75, he's still around, still willing to help, still educating himself by attending courses at Ballyfermot Senior College. But he's not doing voluntary work any more. The State won't let him.
Tom was in a car crash five years ago and has to get around in a wheelchair. Not being the type to complain, he accepted his lot for a while.
Over a year ago, however, it became clear that he couldn't keep depending on his wife, who's also getting on in years, to push him around. So he applied to his local health board for a powered wheelchair. After all his years of paying taxes and contributing to the community, it's not much to ask that the State give him a little help to retain his independence, his dignity and his status as an active citizen.
Tom's needs, however, are not a matter of rights but of whatever the State finds it convenient to give him. For months and months after he applied for the powered wheelchair, he couldn't get anyone to respond at all. Whenever he rang, the person he needed to talk to wasn't available, and no one else could help him.
When he eventually got an answer it was that since he hadn't looked for anything immediately after his accident, his application would have to take its place at the end of the queue.
No occupational therapist was available to come and assess his needs. So the Irish Wheelchair Association, of which he is a member, got a therapist of its own to carry out the assessment. He sent a letter from the therapist and one from the consultant who had treated him after the accident to the health board.
When he heard nothing back, he hit the phones again, eventually to be told that the letters had gone missing. He sent copies. The copies, he has been told, never arrived.
Tom can't use the bus, because none of the four routes that pass his house has a wheelchair-accessible bus. When he travelled by train to the IWA's respite centre in Co Roscommon, the experience was humiliating. The staff at Heuston Station were kind and helpful, and they fetched a ramp to get him on to the train.
But the train doorway was too narrow for the chair to be turned around and the sliding door into the carriage wouldn't open all the way. Eventually he had to be more or less manhandled into his seat.
Edel Carey's local train station is Roscrea, Co Tipperary, but she can't use it at all. The trains serving Roscrea don't even have the kind of awkward access that Tom Battersby had to endure, so if she wants to travel she has to get someone to drive her to Templemore or Thurles.
She doesn't travel to Dublin as often as she used to before multiple sclerosis put her in a wheelchair two years ago. She can't get an accessible bus to take her where she wants to go, and she can't afford to take a taxi.
One of the reasons she likes to get to Dublin, though, is that the new shopping centres like Liffey Valley, which were planned with people like her in mind, are a joy. In Roscrea, on the other hand, many clothes shops have their women's departments upstairs, so she just can't get in. It's the same story with the pub - she can only go to a pub with an accessible toilet.
Eileen Daly's mobility has always been limited. Unlike Tom Battersby, she does have a powered wheelchair with specialised seating, a machine that costs about €10,000. But she's only had it for the last year and a half and had to endure long delays and a deep-seated official reluctance to accept that she really needed it. She also needs a hoist to get her in and out of bed, but finds it very hard to get it properly maintained or replaced when it breaks down.
Eileen often uses the DART, but getting on and off can be an anxious experience because there's a dangerous gap between the train and the platform. And when she does get off, she often finds herself stuck - on occasion for hours at a time - in the Tara Street and Pearse Street stations because the lift that she needs to get her down to ground level isn't working.
A simple thing that would help her a lot would be an announcement that the lift is broken before she gets off, but the idea doesn't seem to occur to anyone in authority.
Eileen says she's one of the lucky ones, because she's been through third-level education and has a job. From her experience in both the special and mainstream education systems, she says parents often don't know what their children are entitled to.
Some of the provisions are, in theory, very good: the school can apply for classroom assistants and extra time in exams for pupils with disabilities. But there's little sense of active official engagement. If you know what the entitlements are and are able to make a bit of noise, you'll probably get them. If you don't, the system doesn't go out of its way to find out what you need and how you're doing.
This becomes especially critical when the time comes to move out of education and into the job market. There is an almost complete absence of structures to help people with disabilities find jobs that match their abilities.
James McNabb has a job but spends his days in courtrooms, though he is not a lawyer and his only crime is to have a four-year child with autism. James and his wife Nichola, who live in Moycullen, Co Galway, are not themselves disabled. But the State has effectively made them so. Their love for their son and their determination to give him the kind of intensive education that they know will dramatically improve his quality of life has made them enemies of the State.
With five other Galway families of autistic children, they have had to set up their own school and take the Minister for Education to the High Court to get him to fund it. Like thousands or other carers and families, their lives have been thrown out of shape simply by a trick of fate. Like many others have found, the State, for all its platitudes, can put on a hard face when it is challenged. Colum McNabb's case is being fought tooth and nail in the High Court.
What Tom Battersby, Eileen Daly, Edel Carey and James and Nichola McNabb have in common, apart from the effect of disability on their lives, is that they are among the fortunate minority. They are confident, articulate, feisty people who can fight their corner.
Around them there are tens of thousands condemned to silence by intellectual disabilites, lack of appropriate education, ill-health, poverty, discrimination, isolation and the sheer weariness that comes from a life of unrelenting sacrifice.
If the eloquent, educated, energetic minority finds itself condemned to a category of second-class citizenship in which basic rights are at the mercy of the authorities, to what category does a person with an intellectual disability confined to a mental hospital belong?
This is why the disability movement could not accept a Disability Bill that refuses to acknowledge that people with disabilities have human rights and that nullifies every obligation it places on the State and public bodies with escape clauses like "insofar as is practicable".
They know that by kicking up enough fuss and making enough noise they themselves might eventually wring some concession towards decency out of the State. They also know that a strategy of buying off the noisy ones with a few grudging concessions would allow the State to leave hundreds of thousands of people with disabilities and their carers to stew in silence.
Having forced the effective abandonment of a Bill that would have turned their rights into privileges, they are not going to stop until those rights are acknowledged for all.
• Fintan O'Toole chaired this week's meeting in Dublin of disabled people and their families angry at the Disabilities Bill