There is a danger when we do get to the ‘social’ aspects of the campaign that the issue of rights and position of people who are minorities or oppressed and disadvantaged in our society will be reduced to economic units.
A danger? In fact it’s a sure cert, because for the past few years the position of people with disabilities in society has been relegated to a patronising rant to take out at budget time where opposition spokespeople decry the cuts to the blind pension or the carers allowance. At other times service providers either individually or through networks or via desperate parents are portrayed on news programmes either as being heroes or being cut to the quick and we see demos and wheelchairs and tragic stories and it disappears until the next crisis.
Disability in this election is invisible, we don’t even get the ‘cuts hurt the old, the sick and the handicapped’ mantra but we might yet(I’m thankful for that omission so far) . The right of someone to an assessment of their needs and the assistance to see those needs met was outlined in the Disability Act 2005 – six years ago. Since then very few children and no adults have had that assessment done under the act. While there are plenty of access officers and meetings by public agencies trying to make their service more accessible, making the lives of people with disabilities better has been left to be forgotten about.
Lots of services are provided – 600 organisations paid nearly €2 billion by the HSE to provide services but no standards to check the services and little choice to move. There are many great staff, and lots of managers, plenty of conditions which are against international best practice and far too much ‘be grateful for what you get’ or people not knowing or being told about what they should get.
The right to a quality of life, a choice about where you live and who you live with, the supports you need in order to live in your community, to work, to go for a pint, to vote in an election. None of these are seen as important in this election. Disability is not mentioned in the FF manifesto, it is not in the FG manifesto though may appear in a policy yet to be released and is not in the Labour manifesto either except to be referred to as a social service but no plans for it or understanding of it.
Disability is not a health issue – it is one of social services and we should expect out politicians to treat it as thus. Social as in society – the type of society we want our children, older people, people with disabilities, women, men, parents and families to live in and to be supported to live in. This is not about money – not more money, it’s the way the money is spent.
It is about jobs and keeping certain people happy, however more often than not it’s not the people with disabilities satisfaction that is at the heart of the policy making. And that is a scandal and should be referred to as a scandal.
Instead too many people take decisions on what is best for people with disabilities, people who have no right to do so and do so behind closed doors.
People with disabilities may be cared for by people they may not want to live with. The legislation on mental capacity in Ireland goes back to the 19th century – this is unbelievable but not in Ireland. Many people with disabilities have money in bank accounts that they don’t know they have or cannot access and are not allowed spend.
There are still large institutions in Ireland where people who do not want to share space with each other are forced to do so. Hidden from society, where the staff and services are automatically perceived to be wonderful and the questions are not asked. Communities still protest when a small group home is opened down the road. This is 2011, years after European and other ‘Years of the Disabled’, Special Olympics, My Left Foot, Inside I’m Dancing, Leas Cross.
And very little has changed except the lucky get to go to college, the luckier get jobs, the number of private nursing homes has increased substantially many now becoming new institutions for people with disabilities and receiving tax incentives and closing doors on people’s lives all over again. Some groups win awards but nobody enforces standards and campaigns are stultified before they begin because people are tired and nobody knows enough to care.
Families see little hope, and supports cut and no respect for them or their family members. And disability is wiped from the national agenda while we worry about the economy and not the society that is withering away inside it.
Inclusion Ireland are chronicling the experience of people with disabilities and their families in this election - Disability Rights are my Priority – are they yours? tell them about your canvass experiences and find out more about what political parties are saying on disability if they ever say anything.
One of your best posts ever Suzy. Needs to be sent around everywhere.
Tweets that mention The Disability Invisibility Cloak in #GE11 -- Topsy.com // Feb 9, 2011 at 01:30
[...] This post was mentioned on Twitter by Eleanor Fitzsimons, Frances Byrne. Frances Byrne said: Brilliant, brilliant, brilliant post from @suzybie. Read it NOW. http://bit.ly/h60ZMv #ge11 [...]
Very good post, Suzy, and hits a point that many will miss. In the rush to privatise anything and everything, there is a real danger that inclusiveness will be lost. I think its already gone in a behind-the-scenes backdoor privatisation in place under Harney’s reign of terror at the HSE.
It disturbs me, however, that there are 600+ organisations providing services to disabled people. Who are they? Why are they being paid? How is governance enforced, if at all? It is no wonder, if HSE are effectively “outsourcing” to these organisations (again via backdoor arrangements) that there is such a lack of choice and governance, no matter how well intentioned these groups are.
What I also find concerning is how one-off cases seem to distract from the debate. The most common ones concern education. I do have friends who fight tooth and nail to send their very dsiabled children to “normal” schools who have no funding, no support and no real understanding, while others work in special services that have the background and resourcing, but are highly stigmatised and families come with misinformation and unrealistic expectations. I wonder sometimes why that stigma is allowed to continue and why people think that pushing towards non state services is “better” even though its obvious that those services are not able to cope. I don’t think its just about choice: its about awareness and knowledge. And I think the fact that more than 600 organisations are involved in essentially stepping into the states shoes is a part of the problem. People have great difficulty, from what I can see, in finding out what is available to them and what is in their interest. It is then too easy to be misled into well intentioned but poorly informed choices about what is best without really having a full picture.
Perhaps what is really needed in some kind of umbrella service or order to be placed on services, a kind of one-stop-shop where at least people can make informed choices about options available to themselves or those in their care.
Well said Suzy.
There is stronger regulation of horses than services for people with disabilities in this country. How many reports do we need to highlight the treatment of people with disabilities as second class citizens?
Maybe they need to be reminded that€2b a year is spent by the State on ‘disability services’?
People with disabilities have the right to direct their own services and their own lives
Jim good point but where is the governance? Who oversees services and makes sure that what is offered/delivered is inappropriate? Social worker friends have often commented on individual cases around home that so-and-so was in the wrong place or not getting the best care. Yet there seems to be little to help disabled people or their carers decide what might be best. They don’t really have a choice: as I pointed out above, either they accept whatever happens to be on offer or sometimes with the best of intentions demand something else (without really getting good feedback on whether it is the best option).
In a sense its symptomatic of the chaos that is the HSE. For example if you are athsmatic, even a quite severe patient, your treatment is only ever as good as what you happen across or demand – there is no central point of contact outside of your GP to whom you can ask questions etc. For that reason, we have some of the worst patient management for athsma in the civillised world. Likewise diabetes – yes there are clinics but a lot of services are not always joined up in the way you might expect.
But I do also think that when broad-use services are designed, disabled people are not merely invisible – they are non existent. Housing is so good an example its not funny. Transport being pushed towards outsourced licensed services means yes, better services, but ones that are totally and utterly inaccessible (the many airport expresses and Swords Express is a good example – there is no way you can get a wheelchair onto those coaches without huge difficulty).
To me its a lot like National Irish Banks plan to cut off cash services – they simply didn’t think of people who had to deal in cash, for example, welfare recipients. And it took nearly 4 months to come up with any kind of solution for those people. Those people didn’t exist in their minds when the original plan was devised.
Great stuff Suzy. Way back in the eighties when I was doing research for my book ‘Rebel on Wheels’ I interviewed Eamonn Gilmore then of the Workers Party. He was elegant in expressing how Liam Maguire taught him how people with disability are treated as a culture apart. Yes, Eamonn, if you are reading this you can be sure your former friend is turning in his grave.
The Week in Review #3 « Get Ahead’s Blog // Feb 11, 2011 at 10:59
[...] The Disability Invisibility Cloak in #GE11 [...]
Manifesto Watch – Disability // Feb 11, 2011 at 19:32
[...] The Disability invisibility cloak is being lifted on the General Election. Now lets see if the parties and their representatives can talk about it! [...]