I am a disabled person. When I use the word "disabled" about myself, I am making a political statement. I have an impairment, but my disability arises from the discrimination I suffer because society fails to take full account of my rights and creates barriers to my full inclusion.
It was disabled people who recognised that disability is really a form of discrimination against people with impairments of body or mind. This social model of disability was formulated by disabled people in the 1970s as a basis for identifying changes that disabled people needed.
Three main changes were identified - comprehensive and enforceable civil rights legislation; effective representation of disabled people's interests by disabled people themselves; and freedom of information legislation to stop organisations holding discriminatory information.
Disabled people are still waiting for all three changes. In the early 90s they were at the forefront of the campaign for anti-discrimination legislation that led to the Disability Discrimination Act. However, that legislation is not what disabled people wanted. The Labour government has reneged on its commitment to comprehensive legislation by instead choosing piecemeal additions to the act, and the proposed draft disability bill will, sadly, be more of the same.
Consequently, state-sanctioned discrimination of disabled people continues, particularly where social exclusion is most likely: in employment, education, health, housing and transport.
Disabled people increasingly endure rationing of, and charging for, basic social needs. A eugenic approach is adopted to medical care - a bias towards termination of disabled foetuses and "do not resuscitate" pressure on disabled patients. The lack of accessible housing and appropriate personal assistance at home forces disabled people into "care" institutions. Disabled children continue to suffer segregation in "special" schools - a segregation controversially endorsed in a recent government report. Disabled people desperately need effective representation and a real voice.
The Disability Rights Commission (DRC) was a positive outcome of Labour's review of disabled people's rights, to help to enforce the DDA. However, the commission is not the voice of disabled people - commissioners are appointed by the government, not by disabled people, and some bodies who should consult disabled people consult the DRC instead, believing that is sufficient.
You may assume that charities speak for disabled people. That is generally not true, either. Only a small minority of disability organisations are run and controlled by disabled people.
Actually, the disabled people's movement has some animosity to disability charities, particularly the "Big Seven" - Scope, the RNIB, the RNID, Radar, Mind, Mencap and Leonard Cheshire.
The primary reason (apart from the fact that they suck up to the government) is the way these organisations treat disabled people. They are slow to insist on disabled trustees, and the number of disabled staff is pitiful, particularly at senior levels. They use negative imagery and language in fundraising activity, and continue to run care and educational facilities rooted in segregation. They are an institutional reminder of the attitude that disabled people are charity cases, rather than citizens with equal rights.
Organisations run by disabled people work hard to make our "voices" heard. It is not simple. Traditionally, society has found it easier to fund the disability charities. Also, disabled people's organisations have refused to seek "charity", so resources are much more limited.
Consequently, our concerns are drowned out by the voices of the large disability organisations with their well-resourced campaign departments. At best we are seen as a few among many, so even in the disability arena, the voices of disabled people are marginalised, dismissed as extreme and unreasonable.
For these reasons, the British Council of Disabled People has supported the creation of the UK Disabled People's Parliament (UKDPP), which will meet this weekend in Birmingham. Organised by disabled people for disabled people to talk about issues that affect their daily lives, the UKDPP remains true to the themes of the European Year of Disabled People 2003 - the themes of rights and participation.
It will provide an opportunity for disabled people to put questions to important decision-makers, including Maria Eagle, the minister for disabled people, and Bert Massie, the chairman of the DRC. It will also debate what is effectively a bill of rights for disabled people - the disabled people's rights and freedoms bill - which will be the subject of a Westminster lobby on October 29.
The parliament is not the ultimate solution to disabled people's need to get their voices heard, but it is a new way of approaching the problem, and its very existence makes a statement. We are a community that wants its representatives to be heard at the highest level, and we will work together to achieve that. We are disabled people. This is political.
· Andy Rickell is director of the British Council of Disabled People
