Feb 272011

Many thanks to Sue Bott for giving us her speech to be published here.

Sue Bott

Sue Bott



Sue Bott, National Centre for Independent Living

Thank you for inviting me to your festival and giving me the opportunity to speak to you about independent living and the current situation we are faced with.

We have come a long way in the last 30 years.  Looking at the exhibition you have of disability history you can see how much our lives have changed since the days of institutions and low expectations of disabled people.  This is thanks to the pioneering work of disabled campaigners: people like John who as part of Project 81 argued for and eventually succeeded in persuading his local authority to give him the cash so that he could employ his own personal assistants rather than have to spend the rest of his days in the Leonard Cheshire home in Lis, Hampshire; and people like Ken and Maggie in Derbyshire who were able to move out of an institution to a house where they occupied the ground floor and the people who lived on the floor above in return for living rent free provided personal assistance.

The Independent Living Committee of the British Council of Disabled People led the campaign by disabled people for direct payments so that we could arrange our own support rather than have it arranged for us.  Eventually of course we succeeded and direct payments legislation was passed in 1996.

But we know, and experience has confirmed, that realising independent living is not just about changing the law.  We have to change hearts and minds, we have to bring about a complete change in the culture of professionals working with disabled people.  What is even more important is that we have to believe and understand independent living ourselves.  I think perhaps in recent years we have become complacent and assumed there is acceptance of independent living giving us choice and control in meeting our support needs.

The last few months have taught us that there can be no such complacency.  In the battle of ideas we disabled people are being severely challenged.

The UK Government is taking our terminology and abusing it.  Andrew lansley, Secretary of State for Health takes the acknowledged term of the international disability rights movement ‘nothing about us without us’.  How dare he!  It is clear from his plans for reforming the NHS – giving all the decisions to GPs and health clinitians  – that he is not talking about the rights of disabled people.

Maria Miller, Minister for Disabled People, has claimed that her plans for abolishing the Disability Living Allowance and replacing it with Personal Independence Payments are based on the social model and yet, if you get anything at all, it will only be through a medical assessment.  We’re all going to be ‘PIPed at the post’!

I have heard it said that such an abuse of our language means that we should change it.  Personally I do not think so, rather we should seek to explain our language more widely, what it means, and what it means for our rights.

We need to explain the social model, that it is about the environmental and attitudinal barriers facing disabled people and, contrary to what you think Maria, these barriers have by no means disappeared.  Yes we have made progress but we are not there yet.

We need to explain independent living, that it is about doing what we want to do at the time we want to do it by having choice and control in how our support needs are met, and that by having such control we can be active and equal citizens.

Never has it been more important to articulate our aspirations as disabled people than now.  Just consider the attacks on disabled people that the Government have unleashed upon us: –

  • Independent Living Fund – Closed.
  • DLA to be replaced with PIP which most of us will not be eligible for.
  • The agents of ATOS assessing us and stopping our support according to some code that only they understand.

Bye the way I have heard that here in Scotland you had a day of action that closed all the ATOS offices.  Congratulations.  I always say people north of the border have much to teach us southerners about campaigning.

  • The frankly bullying tactics of access to work administrators on disabled people who have the temerity have support in employment
  • The draconian cuts (as much as 20 – 30%) being made to disabled people’s care packages by local authorities

If we are to assert our right to independent living, which we are entitled to under article 19 of the UN Convention of the Rights of Disabled People, we need to build allies.

We need to build allies with trade unionists.  I attended the People’s Convention in London on 12th February.  It was good to be there and have a workshop on disability rights and independent living.  The SE regional Secretary of the union Unite was clearly moved by what we had to say and referred to the attacks on disabled people in his final speech.  This is different to cuts campaigns of the past.  We are there and speaking for ourselves.

We need to build allies by signing up to like minded initiatives such as the Campaign for a Fairer Society which was launched in ‘TheTimes’ in the last few days.  I know many organisations in Scotland have already signed up.

If we don’t act what will happen?  It will be: –

  • Back to the institutions
  • Back to reliance on family and do gooding volunteers
  • Back to having no choice and control in our lives
  • Back to the invisibility of disabled people in our society

We cannot and will not allow that to happen!

If you can, join us in London on March 26th for the TUC march against the cuts.  If all goes according to plan disabled people will be leading this march which will probably be an even bigger event than the anti war march in 2003.

Watch out for the disabled people mass lobby of Parliament likely to be on May 11th.

So, go to it and do the pioneers of our independent living movement proud!


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