Saturday, 15 February 2014
Life Without a Voice
The image above isn't pleasant. Living with motor neurone disease (MND) isn't either, but after 14 years I am used to my condition. I no longer feel disabled, I work voluntarily for two charities and I know that I work well. I have been bringing up two children on my own since 2003 and they are now kind, thoughtful teenagers. I'm an empowered patient and manage my condition very well, with the help of my hospice doctor. MND forced me to become an employer and I manage a payroll for five carers. Coordinating care isn't always easy but I do it because I want to choose who works with me. I run my home alone, pay bills and have bank accounts like everyone else. I use Tobii eyegaze technology to do most things online and I love being independent.
I'm not saying all of the above to blow my own trumpet or to boast. I'm saying it because, every now and then, a situation occurs that makes me feel like the woman in the photo. Yesterday was one such occasion.
I opened a letter on Thursday evening from the HMRC about my tax credits. The letter said that they suspect that I'm living with a partner but that I've claimed tax credits as a single person. They asked me to send them a stack of original documents within two weeks. I knew that I had to phone them and from past experience, knew that this would be a problem. Increasingly, we are expected to listen to computerised voices when we call government departments and big organisations nowadays. The problem is that the staff at these places are not prepared to speak to someone using a computer as their voice.
My voice is unintelligible to most people. I've accepted it. I have eyegaze computers with wonderful, loud, clear voices and I love using them. The woman at the HMRC spoke to my son first, who explained that I could talk to her with my computer. She didn't say OK and continued to ask him security questions. She found out that their letter was sent to me by mistake. Before hanging up she advised me to appoint someone to speak to them in future. I told her with my computer voice 'I do everything myself'.
Last year I tried to transfer a balance from one credit card to another. There was something wrong with the online banking system so I had to go to my local branch. The staff know me well and phoned the credit card section. No one there would do the transaction because I couldn't speak to them on the phone. Six months later I received a letter saying that my credit card won't be renewed.
Every year the DWP ask me to send my bank statements in. I sent them twice and finally by recorded delivery because they kept requesting them. I had the tracking number and my carer phoned to give it to them. They wouldn't speak to her and aggressively told her that I must appoint someone, not only to speak on my behalf but to receive my income support. How can I pay my bills if someone else receives my money? They sent an appointee form but I threw it away, hoping that when I have to phone them again I'll get a more compassionate person...