Like many disabled people, I often find it hard to answer yes or no questions because my life is just not that simple. As a complex individual, I require the systems around me that I rely upon, from social care to Sky Television, to be willing to listen to my often unique situation in order for them to respond appropriately. Since the rules may not always fit my situation, I often depend on the compassion on the people I am dealing with to understand what is fair and appropriate action to take. This is the reality of living as an octagon in a world full of square holes.
Sometimes the system takes the flexibility of human judgement out of the equation, and we end up with a situation akin to the famous Little Britain sketch where the computer simply says no to everything. While the sketch is indeed funny, it so accurately portrays what too often happens when you deal with 'more than my job is worth' staff or systems that have become inhuman. I would like to offer you two examples of what happens when systems fail people and indeed fail themselves.
The first example is about a close friend of mine, who also has cerebral palsy, more severe than myself meaning he uses an eyegaze device to communicate with, as well as managing his life. His current eyegazer is starting to be knackered and so he went to his local NHS 'AAC' Service in Birmingham to see if they would supply him with a new one. He was regarded as eligible and they purchased the device he wanted and needed, which arrived at their offices in September. So far so good, but the problem is despite the device being solely for his use, they are refusing to give him an appointment to pick up the device until January because of funding! This means the device will be doing nothing but sitting in a cupboard collecting dust for 4 months while my friend struggles with his old technology. I can imagine of this just one of many examples within the NHS where inflexible and badly designed policies cause distress, as well as causing so much waste!
The second example is closer to home and more worrying. To assist me with my ability to work, I have received 30 hours funding a week into my support package from Jobcentre's Access to Work for the last 16 years, with no problems until now. In August they wrote to me out of the blue asking me to prove I was self employed by sending them my accounts, and tax information, including my National Insurance bill. Considering I am well known for what I do, and even won an 'Enterprising Young Brit' award in 2004, presented by Gordon Brown, it would be ridiculous to suggest I am not self employed, right?
Due to some issue with my National Insurance, which you would need a degree in Taxation to fully understand, they have proudly told me I am not self employed and given me two months notice that they will stop my support. I would dearly love to know what they think I have been doing for the last 16 years if I am not self-employed? Stopping my support will basically mean I may have to give up work, as well as painfully reconfigure my support. Giving up work is likely to be the catalyst to seeing my carefully balanced mental wellbeing unravelling to the point alcoholism and depression leads to suicide, and that is something I do not say lightly. And the fact Lord Freud has decided people like me are not worth the minimum wage when I can charge anything up to £100 per hour for what I do is certainly not helping the situation.
I am trying to get it sorted but I am continually confronted with very nice people in call centres who are simply repeating what their computer has told them to say, I do seriously wonder if I am speaking to an advanced version of Siri! No point shouting at them, but trying to find a way to talk to the people at DWP who have the authority to resolve this nightmare is both frustrating and exhausting.
There is little point the government talking about providing disabled people, or indeed anyone, 'person-centred' services where the real winner always seems to be the computer, who ends up with all the power. People's mental wellbeing would be dramatically improved if services were better at listening to them, even if the decisions made were not always the ones they wanted. Most of my battles and stresses in life relates to trying to change the shape of holes so I can squeeze into them, and we are a long way off that changing.