Eloquence does not make me well or demonstrate my wellness. My eloquence comes at a huge cost. For every television, radio or newspaper interview I do I can lose two days or more of what passes for normality. There is a natural high at the end of an interview that goes well. In my case this always extends into mania which always plummets into depression. A period of rapid cycling begins and for at least two days my mood fling themselves rapidly from one extreme to another leaving me exhausted and scared that the next time will be the time I dare to die.
If I am wrongly deemed to be fit for work under the Work Capability Assessment then I am not only at huge risk because of the stress and strain that the situation would put on my illness but there will be a loss of income that would be difficult to cope with. Don’t think for a moment that I live in the lap of luxury because I don’t. My life is a fractured existence; I mark time badly and my health suffers. I have too little sense of time and rarely know what day of the week it is. I forget important things like doctors appointments or time with the consultant. I forget what I’m saying as I’m saying it. I have memory gaps where all I have is photographs to tell me what I’ve been doing. The money I receive in benefits acts as a buffer against that. It replaces the food that goes off in the fridge because I forget it’s there or I’m too tired or dysfunctional to cook. It replaces the food that goes off because I forget to put it in the fridge. It provides the much needed days away from my so-called routine. I don’t go on holiday so days out are a blessing.
Money does not buy me luxury it buys me safety. It buys me the right to recover and recoup my emotional losses. It buys me the time I need to repair and restructure my mind after periods of disintegration.
There are those who will say (and I can hear them saying it now) that if disabled people can march and protest against cuts then they are proving that the cuts are justified. They are not. There are many levels of disability and not all of them are visible. You do not see what happens in the privacy of someone’s home. You do not see the stress and strain that protesting for the right to live in a humane and safe way brings. Being able to do things is not proof that disability doesn’t exist. Disability is about what we can’t do not what we can do. Disability is the price we pay for doing what we can do.
Today is a medium day, dead centre average. Had I gone on the march today it would have become a bad day. A self-harm in the train toilet on the way home day. A wreck of a life for at least the next few days day. It may even have become the day that I cease to be day. That’s disability and that’s why we are the hardest hit.