"Empowering Disabled People for Full Participation in the 21st Century "
by Baroness Jane Campbell

In order to understand how to empower disabled people for full participation in 21st-century society, we need to have a clear understanding of our recent past.

I guess the real seismic shift from welfare to rights for disabled people, began in the mid 1970’s when I was still a little girl.  Disabled people began to organise away from charities and the statutory bodies that spoke on our behalf. Together we discovered for ourselves what it was that prevented us from being part of society. The seeds of “nothing about us, without us” were sown.

Breaking away from the traditional charities for disabled people, gave us a space where we could beg the questions: Why are we excluded from society? And, how can this be changed? The key was to unlock the fundamental principle of the Social Model of Disability that we hold so precious now. The Social Model had, and still has, the potential to transform our lives and yours. It became over time, the disability movement’s tool for social inclusion. Its fundamental principle is;

Disability is a situation, caused by social conditions which create barriers to disabled peoples full participation in society. Many find it difficult to believe in its transforming power because it argues that our problems derive from external circumstances and not our individual medical conditions. It demands an approach that wrecks the foundations of society’s main solutions to our so-called ‘problems’, i.e. rehabilitation, cure, institutionalisation and, dare I say it, death. If that sounds too heavy, just think about the press coverage this week, contemplating euthanasia for severely disabled babies. The social model helps disabled people counter these negative stereotypes. How liberated I felt when I realised I was not the problem but society was. Suddenly, I no longer had to apologise for my existence!  I couldn’t change me but I could help change society.

Over the past 30 years, disabled people have used ‘Social Model’ principles in our campaigns for comprehensive civil rights, anti-discrimination legislation and independent living. I think we have grown a very powerful disabled people’s movement.  In only 30 years disabled people have gone from being passive recipients of welfare and charity, to citizens with powerful rights to non-discrimination and equality. The number of disabled people in employment has increased. Across the country, housing, built and travelling environments are becoming more inclusive. More young disabled people are achieving at mainstream schools and entering further and higher education.

Whereas until very recently, disability was an afterthought or add- on for policy makers, it is now acknowledged as critical to goals such as achieving full employment and promoting Independent living.

Disability has moved out of the separate and segregated and into the mainstream. A statue of a naked, pregnant disabled woman on the fourth plinth in Trafalgar Square in London simply would not have been thought of or tolerated 10 years ago. Reality TV shows recruit wheelchair users, blind and deaf people, and a young man with Tourette’s. Politicians talk publicly about the experience of disability within their families. Again, this would not have happened 10 years ago.

However not all is rosy in the garden.  Whilst much has been achieved, there are still too many disabled people who are socially excluded and denied their human rights. Let us reflect momentarily on the "widespread institutional abuse" of 200 people with learning disabilities living at a treatment centre in Falmouth and in 46 homes in Cornwall.

"These included staff hitting, pushing, shoving, dragging, kicking, secluding, belittling, mocking, withholding food, giving cold showers, and goading people who used the trust's services. Care was provided in an environment devoid of dignity and respect."

So how are we to tackle such inequalities in the 21st century? How can we empower all disabled people in our society, including the most disempowered like those in Cornwall?  As always there is no one answer.  It has to be a jigsaw of legislative rights, public policy commitment and cultural inclusivity.

Enforcement of the Disability Discrimination Act (DDA) alone will not empower us to become equal citizens, although the Disability Equality Duty has great potential to promote our interests.  So we are also looking to other legislation and big social policy ideas to continue our journey of empowerment.

When thinking about Cornwall I turn to the Human Rights Act. The HRA asserts the dignity and worth of every individual. Equality without a Human Rights framework could lead to people being denied equal dignity. And, of course, the HRA itself is also a potentially powerful tool to tackle inequalities. When the Commission for Equality and Human Rights (CEHR), was conceived, I had hoped that it would be able to take cases under the HRA but, sadly, it will only be given powers to promote Human Rights.

Nevertheless, it is likely that the CEHR will be able to intervene in human rights cases, like the DRC has on several occasions. For example, we gave expert witness testimony in the East Sussex case in the High Court in 2003.  This was a case where the local authority sought to apply its blanket “no lifting” policy to 2 disabled sisters with learning difficulties in receipt of home care support.  In this case the ban on lifting would have resulted in loss of dignity and autonomy for the sisters, and compelled them to go into residential care.  What was required (and was eventually achieved) was a balance between the risks to those tasked with lifting and the disabled person’s human rights. 

The DDA alone could not have achieved this outcome. However, the combination of the DDA and the HRA gave the framework and legal apparatus for a successful, empowering outcome.

What else is on the horizon, that will move us further along the road to personal and collective empowerment?

Many of you will be aware that a new unit was set up within the Department of Work and Pensions in 2005 called the Office for Disability Issues. (ODI)   It produced a White Paper called;

Improving the Life Chances of Disabled People.

The vision in the report is “By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society”.

Within this White Paper, there is a whole range of proposals to achieve this vision. I think one of the most important chapters is on Independent Living.  For without the means to participate and have choice and control over our lives, our life chances will always be restricted.

To this end, I have recently been appointed to Chair the Government’s Expert Panel on Independent Living.

The review has been established to:

• Bring together the views and experience of officials from central and local government, disabled people and people from organisations of disabled people;
• Develop imaginative new solutions across the health, social care, transport, employment and housing interfaces;
• Develop thinking on the relationship between Independent living and individual budgets;
• Make practical proposals for activity to support Independent living.

At the end of 12 months we will leave in place a 5-year strategy for delivering Independent Living with cross-government sign up that will include recommendations for the long-term mechanisms required to drive the IL agenda.

We are also developing a business plan for advocacy, support and brokerage services that disabled people need in order to have choice and control over the support they need.  We will also be looking at whether there is a need for legislation to deliver independent living.

In addition to the Independent Living Review I am also very keen to see the realisation of the Life Chances report (2006) recommendation that states;

“By the year 2010 there should be a user-led organisation, modeled on existing Centres for Independent Living, in every local authority area”.

This is a fantastic aim but the reality is the existing structure of user-led organizations, the Centres for Independent Living (CILs), is being dismantled at an alarming rate. There needs to be a great deal of work done in terms of capacity building and changing the nature of commissioning, before this initiative has a chance of thriving.

So, are there any other National initiatives that will help disabled people’s empowerment?

Well, lastly I would like to mention the forthcoming Commission for Equality and Human Rights

In October 2007 the DRC will close its doors for business and the Commission for Equality and Human Rights (CEHR) will be driving the delivery of equality and human rights for all.

The CEHR is tasked to eliminate discrimination and promote human rights, equality of opportunity and ‘good relations’ between individuals and communities, regardless of age, gender, religion and belief, sexuality, disability and race.

Closing the DRC and becoming part of an integrated commission was not enthusiastically welcomed by disabled people.  I was one of those who felt the time was not right.  We had only been going for six years and have not in any way achieved our agenda for change.  However, the government had decided it could not afford to set up another three commissions on religion, age and sexuality, so merger became an economic inevitability, although it was never couched in that language.  Of course there is a great deal of sense in looking at discrimination across the board.  Whatever your race or religion you may still face discrimination on the grounds of your age or disability, whatever your disability you may still be discriminated on the grounds of your sexuality or race.  We can face many barriers on the grounds of different discriminations as one person, so an integrated approach to solving these barriers is very sensible.

So, we are all in this together. The fact that disability is indeed ‘different’ should not in any way detract from the reality that what is good for disabled people will almost invariably be good for us all.

That’s why the DRC pressed so hard for (and got) an Equality Act that requires the CEHR to have at least one disabled Commissioner on its Board and a Disability Committee for at least five years (perhaps longer) with a majority disabled membership and enough money and staff for that Committee to do its job properly.

These protections are an essential condition of the DRC’s continuing support for the CEHR. Any last-minute government reneging on them would be nothing less than a flagrant breach of faith – in which case, ‘I predict a riot’ (as they say)! That’s always assuming Part 3 of the DDA is working well enough to let disabled people get out on to the streets in the first place!

On this initiative, I think it is a case of wait-and-see….

I have talked to you today about some of the big national plans to help the empowerment of disabled people in the 21st century.  However, no law, no government initiative, and no individual however well-intentioned, can empower someone. Disabled people must empower themselves by taking advantage of some other things I have talked about today.  Because without our involvement and participation, well-intentioned policies and practice become someone else’s idea and responsibility and paternalism raises its ugly head again.