|Labels are sometimes positive things.|
Friday, 19 October 2012
Being autistic often means your life is judged by a set of statistics, many of them being negative statistics to highlight to important decision makers the fact that so many people with Autism are still disenfranchised and denied real opportunities to build sustainable lives for themselves. However on the 9th October 2012, I became part of a different statistic, a rare statistic that I thought I would never be a part of. I became one of the 15% of people with autism in this country who was able to access employment. And not only has it already made a positive difference to my life, It reminded me of why so many people with Autism are still denied opportunities to access the workplace and how ludicrous the work and benefits system we have, which makes things unnecessarily problematic.
I will begin by telling you about my job. The All Wales People First movement (a self advocacy group in the UK) decided that they wanted to appoint a person with a learning disability as their National Director. I and several others applied and were invited to attend a series of two day interviews in Cardiff. On the first day we took part in group discussions and individual presentations about how we would use social media to communicate to the media about what we would do in our position as National Director. Then after being assessed and marked on our performance (how we contributed to group discussions, mixed with others and performed our presentations etc,) we were then told the next morning which of us had been selected to go forward for a formal interview. I and four others were selected for a formal interview. I was the third to be interviewed, in a room called ‘Bernard’, which seemed quite apt seeing as my life coach is called Bernard Pearson and he has played an enormous part in picking me up after leaving social care under very distressing circumstances and the fact that he has always been so encouraging about my place in the workplace and the value I could bring there. Bernard like so many people have far more faith in me than I have often had in myself, and he has been keen to encourage me to gain a new set of experiences which would validate my positive place in the world to replace the negative ones. I am not religious but I do believe in fate and omens and whilst I didn’t assume the role was mine just because the room was called ‘Bernard’, I was confident that I ought to have been there playing a part in the process. Feeling positive that I had taken part in a process, that I was a candidate and that I was ‘in with a shout’ gave me an enormous sense of purpose and fulfilment, getting the position would’ve been the icing on the cake.
That evening I went shopping and noticed a missed call on my mobile and landline. It was Yvonne Boxall from All Wales People First informing me that they would like to offer me the position. I of course accepted and it was the most wonderful feeling. Scary, exciting, exhilarating and nerve wracking, but all positive nerves, the type which help you to focus on the future, to believe you have a future and the kind of opportunity which allows a person to come out of their comfort zone and build onto their life, rather than living in fear that the past treatment in social care may come back to haunt me and dwelling on the negative experiences there. My parents were thrilled and I went to Quiz with Bernard and our friend Neil Binnell and I was on cloud nine. It was the best feeling I had in years, the antipathy of all those times I had suffered disappointments in my life. One of the most wonderful parts of it was in seeing the joy it brought to others, especially my parents who met up with Bernard and I on the way to quiz and were overjoyed and proud to bursting point. They gave me twenty pounds to enjoy myself and I certainly did, though I didn’t drink much alcohol, just being out and about knowing I was paying my way in the world and contributing to society, was the most wonderful experience. Wales has been a wonderful place for me, although I am not Welsh, I associate the progress and the new life I have build here since 2002, to Wales, and it was wonderful to have a position in which I could serve the Welsh nation in some way, to thank it for the wonderful opportunity it gave me for a new life, all those years ago.
Getting back to work has however been problematic and it has brought it home to me, just why it is so difficult (for anyone) let alone a person on the autism spectrum to get back into the work place. Firstly (in my case) I was due to be assessed by Atos after the interview process had taken place. The thought of returning to the work place, unsupported was very scary for me and I strongly suspected I would lose a lot of my benefits and be forced to access work. Working was something I had always wanted to do, but without the right support it would have been hell. The job wouldn’t have caused me problems, but people, people and the work place politics are what would cause me problems and as I mentioned earlier, I suffered enough of that bullying in my care services and that became my only real perspective on how ‘life’ out there would be. Fortunately getting my job has spared me the Atos process; they have written to me and told me I need not attend. That is one big headache out of the way. I do really fear for others on the autism spectrum who do have to face this process however, especially with the horror stories in the national press about people with terminal illnesses etc being forced back to work. How much of this is ‘typical’ or sensationalised, I don’t know, but certainly the rumours about Atos and the whole process has terrified me and so many people I know with learning disabilities and Autism. The whole ambiguity of what will happen and how the new system will work is really not ‘people’ friendly let alone ‘autsitically friendly.’ It does seem unfair how people with autism (like many with disabilities), were on the scrap heap with little prospect of work are now an essential cog in David Cameron’s ‘Big Society’. Research Autism and other organisations have always pushed the importance of allowing people with Autism to access the workplace, but it seems bitterly unfair that it is only happening now when it’s convenient and with little support.
Going back to my situation, one of the most difficult parts (and most exciting) was coming off benefits. It was wonderful to think I would stop claiming benefits but I hit a major hurdle in the transition from benefits to work. Obviously my benefits would stop and it would be a month before I got my first wage, meaning that for a month I would have no income in which to pay my bills. I was told by the Department of Work and Pensions that I would get my Income Support for a month after I returned to work (and not have to pay it back), would get a one hundred pounds bonus for returning to work and then forty pounds per week once I started work for fifty two weeks as an incentive to return to the workplace. I was also told that I would still receive my housing benefit and council tax payments for a month and would not have to pay them back afterwards. With that, my wages and working tax credits, everything was looking superb, but there were snags. Firstly the D.W.P, had dropped a clanger, I would not get Income Support for a month after starting, but I would get the one hundred pound bonus and the forty pounds per week. A mistake with my housing benefit meant that this was not paid to me either. I chased this up; they acknowledged their mistake and promised to make me an emergency payment which would arrive the next day. But it didn’t. I was then told they made a mistake and it would take several days to clear. I couldn’t claim working tax credits because they couldn’t identify me, but didn’t make that clear to me until I called them and asked why it was taking so long for my claim forms to arrive. I had to then go to my local Inland Revenue office and identify myself before I could put in my claim form, which I am still waiting to be processed, and am still not sure if this will be granted or if indeed the form will be returned to me, through not filling it in properly etc. Fortunately my D.L.A. has not been affected, although that will inevitably change next March when the government introduces its Personal Independent Payments, whatever they are.
And that’s the problem, the ambiguity. The D.W.P website has reassuring messages to those with disabilities about the new system but it is written in generic terms. It says the system will be fairer and that it is focused on making sure those who deserve benefits get them and those who don’t are removed, but that is open to interpretation, for my viewing it doesn’t properly identify who will be affected and who won’t and it doesn’t reassure me that they understand disabilities such as autism and other so called ‘hidden’ disabilities or learning disabilities. To be fair to Atos the application form does enquire about all disabilities including learning disabilities but with the sensationalist headlines and political spin from the opposition, it is very difficult to really know where people stand at the moment.
On the whole, it has all been worth it. Coming off benefits, signing up to a pension scheme and the pride of going off to a job, has had an enormous impact on my self-esteem and my feelings of self worth and this makes me more determined to advocate that all people with autism should have the same opportunities. However as I work for an organisation who are sympathetic to Learning Disabilities, it has been far more accessible than most other jobs I could’ve applied for. If it wasn’t for my parents lending me money until my wages arrived, there would be no way I could’ve taken this job. The benefit cuts are cruel particularly because not only could some people be forced back into work without the right support; some people may not have the right people to advocate for them or parents to sustain them whilst their financial situation is settled. I have spoken in front of many senior politicians thanks to the opportunities given to me by Research Autism, and they all speak so eloquently about disability and they speak as if they really do get it. This brings me to one conclusion. And that is that organisations like Research Autism are being heard and they are getting their messages out there, but obviously disability issues are not as important to the government as issues surrounding the economy and trident for example. I don’t want to scare monger but I believe we are living in some of the most challenging times in the history of disability and it is at this time we are really being tested in how we think about, promote and empower people with autism.
I would like to end this blog by saying an enormous thank you to Richard Mills (R.A. and N.A.S) and Assumpta Finn, (Jersey Social Services) for agreeing to be my referees in my job application and an enormous thank you to Geoffrey Maddrell and everyone at Research Autism for the marvellous opportunities which allowed me to develop as a public speaker and to gain the relevant experiences to submit a strong job application. I have no doubt that these experiences have played a large part in preparing me for the interview process and has given me some important skills to help in my new job.