Category Archives: Cystic fibrosis

History, Inequality and Activism. Political Meaning in the 21st Century

1981 was designated the International Year of Disabled Persons. The international community called for a plan of action for change at every level international, national and local. This was possibly the first acknowledgement of the discrimination and inequality faced by those with disabilities throughout the world.

The aim of the year was to promote equality of opportunity for people affected by disability. On a personal level I don’t know if anything much changed in terms of how the able population thought about, and reacted to, the presence of disability and the people affected by it. I was a child and my condition was newly diagnosed.

Looking back now at the more than 30 years that have elapsed since then, we can see that it was far from a great watershed with regards to prejudice and discrimination that one might have expected it to be. It did, I am sure, raise awareness of disabled people and their needs on some level, but little really changed. It was as if a group of politicians woke up one morning and said, “Oh yes, disabled people. Let’s tell the rest of the world they exist.” and the rest of the world responded by saying, “Thanks for the information, but what do you want us to do about it?” It took another 14 years for significant anti-disability discrimination legislation to make it onto the statute book. Until this time it was perfectly legal and acceptable practice for shops not to have wheelchair access, for cinemas and theatres not to allow disabled people entry as they could be deemed a fire risk, or to be forced to travel in a cold, guard’s van when on a train, something I did on several occasions as a child.

To be honest at the time it never struck me as wrong or in any way a bad thing, it was just the way it was. It was only when I travelled to the United States with my family that I began to understand the concept of disability rights e.g. universal access to buildings. Here it seemed it was radically different. I could board a train or a bus on which there were designated spaces for wheelchair users. Here I was able to travel like a citizen and not as someone else’s luggage. It was the kind of socially aware design that we are only just beginning to see in the UK.

It has now been 20 years since the Disability Discrimination Act came into force in Great Britain. The Act aimed to provide legal protection and redress for individuals living with disability. Like me, many of you will remember those bad old days of segregation, when disabled people were sent to separate schools and social clubs. We lived parallel to the rest of the social world, side-by-side with our community, but were never allowed to be properly part of it. Just as women in the 19th and early 20th century were left politically mute, without the means to vote.

There is now a whole generation of children and young people who have grown up post discrimination legislation who have an expectation of inclusion. Things are very different today, we have become people with disabilities, we are given choices and we have more of a say in our lives.

So, as people with disabilities can we look back at our history and say, “Job done.”? I was attending a meeting of students with disabilities and was blown away by how assertive they were. One student was even complaining that she had to use a different door to her non-disabled friends, something that she found utterly unacceptable. In my day, I was just grateful to get in the building. Oh, how far we have come.

There are however some niggly, remaining issues particularly locally where I live. Wheelchair accessible taxis are tacitly allowed to charge wheelchair users twice the price of a standard taxi for the same journey.

See story link.

http://www.bbc.co.uk/news/uk-england-stoke-staffordshire-31169638

At my doctor’s surgery recently I encountered a young girl with significant disability, very sparky who told me she liked to get out and about. However that week she had 2 doctor’s appointments, meaning transport to them had reduced her budget to be able to do other activities. Perhaps on a more positive note I was pleased to be watching BBC News, who ran a piece on Sarah Sobka a young woman with Cystic Fibrosis who had won a national Science prize. It was nice to see a good news story and not a story about benefits and cut-backs.

See story link

http://www.bbc.co.uk/news/uk-england-south-yorkshire-31876956

Whilst much has been achieved in relation to disability rights and social inclusion, it is I think unwise to take our eye off the ball. We are, like every other social struggle, only half way towards a solution. In 1928 women were granted the universal right to vote, something that had taken many years of campaigning to accomplish. Many activists suffered long periods of imprisonment and were subjected to humiliating forced-feeding, some even lost their lives. When I was 18 I went to the local polling station to cast my vote as a woman, to have my say. This too is an election year however, many people have descended into apathy, they do not vote, as of course rights also come with the right not to do something. Not every woman is a suffragette and not every disabled person is an activist attending meetings, you don’t have to be.

The fact is that every person with a disability is different, we all have different needs, wants and desires. We live in a time of increased economic austerity. Disabled people can very easily have their services cut as we are an easy target group, many of us need the very support that is being cut to make our voices heard.

To get us back on the political agenda we need as a group to become more vocal once again. Go along to MP surgeries and challenge the political stereotype that has developed i.e. workers versus shirkers; portray ourselves as a group with a considerable number of votes. When politicians speak about social issues they often forget to speak not only about us, but directly to us as well.