Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.
I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.
Patricia de Wolfe is tired of saying ‘sorry’ on account of her energy-limiting illness.
I’m sorry. I’m really sorry.
Sorry I can’t make it to your birthday party, your family gathering, your funeral. Sorry, no, I can’t come over for tea on Friday. Why? No, I’m not doing anything else. But I’m going out for lunch the Tuesday before. Yes, I know that gives me Wednesday and Thursday to recover but Friday would still be pushing it. And tea is a bit late in the day for me. Yes, I am sure. Perhaps we could meet next week? Yes, I know I cancelled last time. Yes, of course I understand you’re very busy… Sorry.
I want to stop apologising. I want to stop explaining. For me, inclusion would mean, at the very least, living in a society in which it is generally accepted that some people are ill. Chronically. Perhaps permanently. And in which we are not regarded as freaks, or hypochondriacs, or scroungers, or, for that matter, just “poor things”, but as people valiantly trying to cobble together something that feels like a life in the teeth of gargantuan obstacles.
Rebecca Boot tackles the painful subject of employment for the chronically ill.
I’m back at university, studying again after my body threw a fantastic tantrum the last time I tried it.
My university has a real focus on employment and one of the highest graduate employment rates in the country. That is great, everyone wants to be able to get a good job when they leave university right? Isn’t that the point of going?
Not really, not for me at least. I applied to Uni because I love learning and my brain likes to be busy.
But here’s the rub – I am not employable, not really, not as I am now. I have plenty of skills, I am smart, I’m a self-starter, I have a whole bunch of somewhat impressive things on my CV, I meet the person specification for a whole lot of jobs already. But I’m not employable.
Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.
I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.
As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.
Catherine Hale considers how half a lifetime of chronic illness has changed her understanding of the term ‘disabled’.
I’ve been sick for nearly 30 years. That’s the whole of my adult life. I always thought of myself as ‘disabled’ in the sense of being very incapacitated. During my bedbound phase I couldn’t wash, feed myself, go to the toilet or write my own name; nor could I read, watch TV or have a conversation.
But I never thought of myself as ‘disabled’ in the political sense used by the disabled people’s movement. That is, I never thought the disadvantages I suffered in not having a job, a career, or a social life were due to an infringement of my rights. It didn’t make sense to blame my profound isolation on other people or organisations excluding me unnecessarily or treating me unfairly.