During the last 2 days I have spent a lot of time watching twitter and reading blog posts (probably much more time than I really should have). I have read some really powerful things, written by really passionate people.
Yesterday’s event was organised by a group of bloggers from the autism community who organised a one day Flash Blog event. The theme was about promoting positive views of people on the autistic spectrum. It was organised because someone, somewhere typed the phrase ‘I wish I didn’t have Aspergers’ into a google search. The phrase was flagged up on one of the blogger’s dashboards and it prompted a group of people to organise the flash blog so that if and when, ever, someone else types that phrase into google the search will come up with hundreds of positive messages and links to support and an on-line community.
This whole idea struck me as amazingly powerful. It is a fantastic example of how social media and the internet can bring people together from all across the world to share insights from a whole range of different perspectives, all with the aim of promoting positivity and offering support. The many posts, all sharing the tag #autismpositivity2012 create a lasting legacy and resource, which will hopefully be useful to many people in the future.
The second event today was Blogging Against Disablism Day (BADD). I don’t know anything about the origins of this but you could probably find out more here The general idea is that people share their blogs about experiences of discrimination, disablism and oppression related to their impairments and health conditions.
I haven’t read so many of these posts, because I have also been trying to work today. Having said that, those that I have read have been so powerful at demonstrating the dangers of what happens when people and systems fail to take account of the personal experiences of individuals. There is a widespread feeling within the UK at the moment that the policies of the government and the media are blatantly discriminating against disabled people.
The closure of remploy (sheltered employment factories, employing disabled people) making hundreds of disabled people redundant, coming at a time when benefits for disabled people are being substantially cut, during an economic depression hardly gives the impression that The Government values and wants to support disabled people. Several of the posts I have read have indicated the harsh assessments for benefits that are now being carried out by people with little, or no, understanding of sickness or disability to determine whether or not people are able to work. It has been assumed that if people can type they can work or if they can tweet, they can work others have described situations where they are desperately trying to make ends meet and to keep businesses going whilst dealing with an impairment or health condition and facing mounting costs and debt and how they have been driven to complete despair. Others have bravely described their daily struggles with chronic and debilitating health conditions with powerful personal examples of the day to day impact this has on their lives and their families, and how, without support, work and benefits their lives could be made unimaginably harder. I would like to direct you to two in particular Benefit Scrounging Scum, which has been nominated for The Orwell prize and Diary of a Benefit Scrounger, written by a very able, but very sick person who has been refused Disability benefits.W
Another aspect of ‘disablism’ which has received some discussion by disability campaigners in the UK today is the decision by the ‘Leveson’ Inquiry into Media standards in the UK to dismiss representations made about the way the media portrays and represents disabled people. The Inquiry has decided that this issue is not important enough for it to hear any evidence about. When inquiries such as this do not consider that the way disabled people are portrayed is valuable and important and for it not to even consider the claims that media representations have led to abuse and hate crime fills me with despair.
Both these events have meant a lot to me, as a disabled person, parent of a child on the autistic spectrum and a disability rights campaigner. In reading and thinking about all the individual stories and messages some common themes come through all of these accounts.
The really important message is that everyone is an individual. Everyone has needs. and the people who are best able to tell others about those needs are the individuals themselves. Even for those who are not able to speak or express themselves in a conventional way it is about getting to know them, finding out what they like and what they don’t like.
Everyone has a value. Everyone has something to offer. We can all do and enjoy things, different things, in different ways, but we are all worth it.
People want rights. They want to be treated with respect and valued for what they can do.
People don’t want pity and patronising for what they can’t do.
This doesn’t mean that people don’t want help and support and that everything is easy and great. It means they want the right to define what is hard, what the challenges are and to be valued enough to receive the support that they need.
This is a very different post to my previous entries, but I felt I wanted to share my thoughts as these are such important issues to me and they are the values that underly how we try to live life as a disabled family and are inherant in the work I do.
Thanks for reading.