Thursday, December 01, 2005

Disability, Charity and Rights

I was surprised at my reaction to Fiona’s posting about a concert in aid of Enable Ireland that she was attending. I apologise for the reaction – however it could have been a lot worse.

It made me realise that issues around disability and particularly reflections on the social model of disability and the disabling society rather than the disabled person are very much absent from the public sphere.

I suppose in my circle of friends, particularly disabled friends, we would not be seen dead (or alive) at a EI event or indeed at the fundraising event of any disability service provider – especially those in the disability industry who pay lip service to disabled people – their service users (or clients or whatever the nice term is these days).

These organisations often do not have disabled persons as board members. If there are users on the board they are often only one or two in number and they are often there for show and window dressing. The organisations fundraise in a variety of manners which in fact embarrass disabled people and often remove any notion of rights as charity and goodwill takes over.

The disability industry in Ireland is frequently unchallenged but is very powerful and has access to huge amounts of state and private sector funding and media outlets as they ply their troth, tell the sad stories or indeed the inspirational ones of Mary who can lift her head, write her name or make her own way to work in a sheltered workshop where she gets 10 euro a week on top of her social welfare benefit cos it’s called training. (god that is a long sentence but you get my meaning)

As many people with disabilities have communication difficulties, these organisations speak on behalf or disabled people or use parents as advocates. Parents whose perspective is not the same as the disabled person.

Some of the largest disability organisations in Ireland (and I mean organisations for disabled people rather that of disabled people) run large workshops (oh they are now called enterprises to make it look good) for so called rehabilitation where disabled people work filling contracts for multinational companies. This could be cooking, filling boxes, printing or other menial work

I work for a service provider (not a workshop provider) which has disabled people working in several key areas and also people with disabilities on the board. It’s a membership organisation, and so members elect reps to the board. It is far from perfect but members direct a lot of the work and consultation actually means that and user led means user led.

This group does fundraise – it uses members to fundraise by bucket collection and through the sale of pins etc. And staff are also asked to fundraise. I refuse to participate on the rights not charity principle.

The Disability Act (2005) provides for advocacy. Suddenly many of these organisations are using advocacy as a buzz word, employing advocacy workers and setting up focus groups. There is money in advocacy. But why is this so new? Weren’t these groups providing services for disabled people, campaigning for rights, marching and lobbying? Well often mini-busses of disabled people are filled and arrive at marches or meetings as part of a day out for the lads. No consciousness raising work is done with those in the bus before hand. Actually what might be happening is that the people working with the service providers are campaigning to get the money to keep their jobs or create other positions in the industry.

The expectations of disabled people in Ireland are very low. Accessing a service is seen as such a victory that looking beyond that on how the service is run and what one really would like to do with one’s life is a fairytale. Speaking out against abuses and being patronised could lead to a loss of benefits or other unfair treatment. The role of the church in many of these groups continues, the habits and collars might be missing, but the patronage of the bishop and the enforcement of mass attendance for many continue.

This year we had exposes on Leas Cross and the care of older people. It was a revelation. We need similar exposes on the running of residential and non-residential services for people with disabilities.

We need to stop having awards ceremonies for companies who are simply obeying the law by employing people with disabilities.

Organisations providing services should have quota’s of people with disabilities on their boards and should be employing people with disabilities throughout their organisation (and not just on reception!!!)

The state need to look at the size and role of the organisations they fund. Are the services growing too fast and too big? Are in fact the closed spaces of the last century being replicated in semi-open spaces run by the so-called voluntary sector?

And those of us in other minority communities need to be asking other questions before we put money in a bucket. Is there sex education in their education and health education programme? How inclusive is this education? Are LGBT service users provided with information and support? How does the organisation support LGBT staff members?

As both a disabled person and a service user I regularly ask myself questions as to the policies that influence services that I receive and employment and service policies in my workplace. I love advocacy – that is real empowering advocacy work, advocacy that is user led and well funded and that means something and actually changes things. So far this year I have not applied for work in organisations that don’t have disabled people at all levels of their organisation. And I don’t want to be campaigning for change wherever I work either. If it’s not there at the start I don’t want to know about it.


At 09:51, Blogger F said...

This post is going to bring a whole new perspective to how lots of people perceive organisations that work with or on behalf of (allegedly) people with disabilities. One of the issues is that a lot of people are completely uninformed about disabled perspectives on things, presumably as a result of the problems you've outlined in your post about organisations not ensuring that disabled people have the opportunity to communicate their perspective. I wouldn't even have thought twice about going to something in aid of Enable Ireland becauise to be honest I didn't evenm know who they were: I was going to hear the Messiah performed in Dublin, it was incidental that it was in aid of Enable Ireland. But I take the post on board however someone has to tell people about the problems with these organisations so that people who might give to these organisations can make informed decisions about whether they want to support them or not. Know what I mean?

At 20:44, Anonymous morgan said...

Yes, but Suzy shouldn't have to take on the responsiblity of educating people all by herself just because Suzy has a blog. We all have blogs, we all know how to do a little research.

At 01:36, Blogger Suzy said...

Some of those who have previously told people about these organisations, exposed the practices and abuses have been belittled, threatened or lost jobs or service.

Others who have campaigned for change or set up independent groups have been burnt out or even swallowed up by the system who see user groups proclaiming independence as a threat.

Rather than having a hit list, I would rather that the participation and rights of people with disabilities are highlighted and reflected on and that these organsiations are made to outline their working practices and standards and enforcement.

With increasing integration of people with disabilities in the public sphere it would be my hope that their entitlements to service would be seen as a right, and would be provided as a right and with no strings, religious, organisational or otherwise. The service should suit the user and not the other way around. The multimillion euro budgets of these organisations are not highlighted by them when they are shaking buckets or asking for donations or sponsorship.

Whilst there is no doubt there are deficits in the funding, it suits the government not to provide the service themselves, and to continue legacies of need so they look like they are doing something but are not actually responsible. If you had said that you were going to the Messiah I would not have had a second thought about it, you said it was in aid of EI which struck the nerve. EI would not be the top of my hitlist if I had one either as there are a lot worse than them around.

need sleep but hope i am somewhat decipherable!

At 03:50, Anonymous Anonymous said...

Actually, maybe its not going "to bring a whole new perspective to how lots of people perceive organisations that work with or on behalf of people with disbalities", because quite a lot of us already know about those orgnaisations and their medical model approach to disability and their patronising attitudes to disability politics.

Now, I would have assumed that someone with a potential career in human rights would not have needed that pointed out to them, nor would they make patronising replies inferring that the onus is on people with disabilities to teach those of us without disabilities about how we might do better. Same old same old... if only black people would explain to us whites, women explain to the men.... yada yada yada..

At 11:24, Anonymous Sean said...

Suzy, thanks for this post, we do need to question where we give money and the ethics of those organisations who provide services on behalf of the state. The use of language by these groups is also something worth examination. Enable indeed - if people were truly enabled maybe their services would not be needed at all and they would be talking themselves out of jobs!


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