"The Last Great Civil Rights Debate"

An interview with Fergus Finlay

Once the Political and Communications Director of the Labour Party and now Chief Executive Officer of Barnardos in Ireland, Fergus Finlay spoke with a regular contributor on disability issues to Indymedia about the current situation with regard to the rights of people with disability in Ireland.

Extract: Finlay also agrees that part of the problem is that too many people are docile about arguing their corner or protesting about the situation. “People are still affected by shyness and shame about having disability in their families. A lifetime of being endlessly patronised and talked down to has resulted in a constituency of people who have ended up absorbing the attitudes which they meet and applying them to themselves. I once made the observation to the Irish Association of Psychiatrists that there is something in their training which causes them all to think that parents of people with disability are probably ‘not all there’, either. While it’s not the case that there are no services – there is some provision, of course, and some people do manage to find adequate services - but the bottom line in all of this is that families and individuals are mostly like square pegs trying to find the occasional square hole into which they can fit.”

He continues “there is an antediluvian perception of disability based on the medical model - provision is not based on the principle of responding to the need – the culture with disability is still a culture of charity. It does not start with the idea that there is a right and of course there is the common experience of a lot of people which is that if you raise your voice you will be threatened - look at the treatment meted out to the O'Hara family, for instance.”

Complete Article As Submitted to Indymedia ireland

In his compelling memoir (Snakes & Ladders, New Island Books, 1998) of his time as a Labour party aide and right-hand man to former Tanaiste and Minister for Foreign Affairs Dick Spring, Fergus Finlay depicts the realities of life in government with striking candour. Referring to the wrangling that took place within the Irish Labour Party during the 1980s between Emmett Stagg (traditionalist) and Spring (moderniser) Finlay has this to say: ‘It was, pure and simple, a struggle for power within the party’. We are not spared details of the viciousness of the fight and the lengths to which both sides were prepared to go - including manipulating internal party voting procedures to ensure the desired outcome. Ultimately, as we all now know, it was a struggle won by the modernisers, and the current Labour party continues ineluctably in the same direction having propelled the once Democratic Left Pat Rabbitte into what must surely for him, at one time, have been an unthinkable electoral alliance with Enda Kenny’s Fine Gael. Finlay was of course one, if not chief, of the original architects of the tendency which has since evolved into what might now be called Pragmatic Labour.

For those who are depressed by the apparent morphing of Labour and Fine Gael (and watch too what’s happening to Sinn Fein in the run up to the election) into versions of Fianna Fail, the spectacle of the Labour party’s handling of issues like the Declan Bree affair is not reassuring. Aside altogether from a distinct absence of political judgment over the issue, principles appear to be an expendable commodity for Labour at times and one wonders, for instance, where they are really intending to go with more pressing social issues, such as disability, if they succeed at the election.

Current compromises in respect of ideology in order to gain power might create some degree of personal struggle for Fergus Finlay where the subject of disability is concerned - as a necessarily pragmatist member of the Labour/Fianna Fail and Rainbow coalitions in his earlier political career - and given the latest electoral pact that has now been struck between Labour and Fine Gael. Fine Gael have stated categorically that they are preparing to work with the much reviled disability legislation that Fianna Fail have passed, while the Labour position is somewhat ambiguous. A clear and thorough statement of Labour’s intentions in this regard, though much needed, is outstanding.

As the father of a child with a disability Finlay has been an eloquent and ardent supporter of rights for people with disabilities and his work in this area has been significant. He describes the issue as ‘the last great civil rights debate’ and this is a conviction shared throughout the gigantic disability lobby.

In response to the suggestion that the Disability Legislation Consultation Group (established, theoretically, to ensure that the Disability Bill would reflect the wishes of people with disability) should have seen the writing on the wall much sooner than they did, Finlay says ‘where the recent bill was concerned, the structures that were put in place during the legislative process were always weighted against us’. This is of course true in that it is now clear that Fianna Fail and the PDs never had the slightest intention of giving the lobby the sort of legislation it so badly needs. But that was obvious to many people well before the first draft appeared and the suspicion remains in some minds that it was, at best, extraordinarily naïve for so many members of the DLCG to continue to place so much trust in a political party which had already ruthlessly demonstrated its true motives towards this issue. It is even more difficult to understand considering the DLCG had a whopping clue given to them about what was in store in the shape of the equally reviled Education of Persons with Special Needs Act, which Noel Dempsey (then Minister for Education) had specifically stated was to be a ‘taste of the main bill itself’. The EPSN Act 2004 had been pushed through before the first draft of the Disability Bill itself had appeared and all the evidence was there, plain as day: every so-called right (a word used with cynical liberality by the drafters of both bills) strangled even at birth by restricting everything to the principles of ministerial discretion and allocated resource.

So what of the Labour Party’s alignment with Fine Gael in these circumstances? Does Finlay not see that there is now, effectively, a four-party alliance against progressing this issue in the way that so many of us are clamouring for? The same might be said, of course, about a whole range of social and environmental issues – from Rossport to Ringaskiddy. It’s as if the entire political establishment has set itself up in opposition to the wishes and needs of the electorate. Finlay agrees that the lining up of the four main parties is regrettable but he attributes the responsibility for it to the success of the Fianna Fail party machine. He also says the difficulty in this instance is as much that the ‘disability lobby itself has failed to make its case or to make an effective challenge’ to the status quo. While this might appear to let the political establishment off the hook, anyone close to the lobby would have to admit there is an awful lot of truth in it. We are hopelessly disparate and fragmented. In addition to gaps in provision, there are countless organisations and groups many of whose functions overlap significantly – if not completely in some cases but also with varying degrees of authority and influence. For a parent with a newborn child with disability or a person suddenly incapacitated the additional burden of this quagmire can be extremely distressing and humiliating.

Finlay agrees that accountability within the sector is virtually non-existent from the users’ perspective. “The legislation which finally set up the National Disability Authority effectively pulled all its teeth before it even started – it does have some useful function as a research body and standard setter but it has no power to make a real difference. The commission’s recommendations for the NDA were that it was supposed to function as a sort of independent ombudsman – to provide some form of redress and that it should be able to report independently to the Oireachtas but in fact it has always reported to a Junior Minister, so far as I know, for most of its life. It has never been able to achieve what it was intended to and it’s a great pity. The disability sector is now mostly made up of large organisations all in competition with each other for resources. This results in waste, excessive bureaucracy and the lack of accountability.”

As with the NDA, so too with the newly established National Council for Special Education (NCSE) which is similarly constrained and unlikely ever to deliver any real or significant improvements in the education of children with special needs. Like the NDA before it, it too has a certain amount of independence in relation to research and proposing standards but that is all.

Finlay also agrees that part of the problem is that too many people are docile about arguing their corner or protesting about the situation. “People are still affected by shyness and shame about having disability in their families. A lifetime of being endlessly patronised and talked down to has resulted in a constituency of people who have ended up absorbing the attitudes which they meet and applying them to themselves. I once made the observation to the Irish Association of Psychiatrists that there is something in their training which causes them all to think that parents of people with disability are probably ‘not all there’, either. While it’s not the case that there are no services – there is some provision, of course, and some people do manage to find adequate services - but the bottom line is that families and individuals are mostly like square pegs trying to find the occasional square hole into which they can fit.” He continues “there is an antediluvian perception of disability based on the medical model - provision is not based on the principle of responding to the need – the culture with disability is still a culture of charity. It does not start with the idea that there is a right and of course there is the common experience of a lot of people which is that if you raise your voice you will be threatened - look at the treatment meted out to the O Hara family, for instance.”*

So, where does Fergus Finlay think we should go from here? “It’s true that the lobbyists are demoralised and need to pick themselves up, dust themselves down and carry on. What I believe is really needed first and foremost, though, is a strong representation from people themselves. The DLCG was made up of service providers – not people with disabilities. This needs to change. We are all waiting to see if the multi annual funding will work but the bill itself in any case won’t work and this will be more and more obvious as time goes on – it’s an absurd and anti-disability piece of legislation.”

Tackling the issue of why some people object to rights-based legislation, Finlay says “perspectives from within the lobby vary: some are insistent on rights-based legislation while others say that if the level of provision was adequate it wouldn’t matter about rights. Opposition to rights based-legislation has always been centred around two basic arguments: firstly the ‘floodgates’ argument – if we fund guarantees for disabled people, the thinking goes, then we’ll have to do it for sick people too. Most people don’t realise that as a cancer patient, for example, there is no actual right to treatment even though it’s commonly thought there is. But the floodgates argument is as nonsensical as it is absurd. All the same arguments were wheeled out when we were arguing for equal pay for women and for the dropping of the marriage bar. But what happened? The heavens did not, in fact, fall down and if anyone seriously suggested reintroducing the marriage bar now, economists would go pale and start shaking, such would be the anticipated effect on the economy. The other canard which is frequently argued is that rights-based legislation will only end up as a gold mine for lawyers. And underlying all these ‘objections’ is the pernicious and unstated idea that people with disability will always be there and that there is really nothing to be done about it.”

Most of us know that this particular prejudice exists just below the surface but in a week in which we have read reports heralding the availability of ultrasound scans that can detect Down syndrome during the first 12 weeks of pregnancy, we have to start wondering about the ‘solutions’ to disability that some people are toying with, with increasing boldness. Another observation that might go someway to helping people out of their prejudiced attitude towards disability, is the clear evidence we have that wherever rights of any kind have been established, they have been almost universally accompanied by improvements in living standards, by the creation of economic, social and other opportunities and by a general increase in the success of that society as a whole. As has been pointed out elsewhere, an example of the shocking waste of potential is the statistic that while 80% of people with Down syndrome are capable of living independent lives, only 20% actually have them, for lack of supportive assistance at critical times in their lives. How can we persuade people to see the value of these lives, to know the benefits and interest they bring from an alternative and brilliantly illuminating perspective? There are whole worlds of valuable and rich philosophy, psychology, sociology, art, culture and talent which are so far going almost completely untapped because of the visceral opposition to recognising that those with disability are not ‘them’ but are an intrinsic part of all of us. How can we fire people up to feel the same indignation and sense of outrage that was felt about equal rights of every other kind when they were being fought for?

Asked what he thinks the disability lobby could usefully do, he says “I’d first of all like to see a commitment to a fundamental review of the disability bill in every political party’s manifesto and a specific programme for government. But for the lobby itself I think there are three clear objectives to focus on in the run up to the election: first we need a coherent umbrella group to gather people (not service providers) together. Secondly, we need clear and focused objectives. For example, one fundamental flaw with the bill is what happens after assessment. It specifies that provision must be restricted by affordability and practicability. If there was an onus on the state to develop a plan within a reasonable time frame, this would be a very significant shift. A planned approach to getting a clause like this into the bill is very important. What we need, in essence, is a progressive realisation of real rights. I believe this objective would be a good counter to the traditional objections. Finally, whatever argument is put forward, it needs to be a well-expressed and coherent campaign.”

Is anybody ready to take up the challenge?

*The O Hara's are a Co Meath family four of whose autistic children were recently taken into care following their parents appeal in the media for adequate services. One of the grounds for their release a week later was that the parents should have no further contact with the media about the matter.