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.
But as someone with a chronic illness, there is often a severe lack of support. Personally, I often suspect I only get the support I require thanks to my visible physical impairment.
People with chronic illnesses have not yet come together and campaigned for their rights in the same way other groups have in the past.
Take the benefits system for instance. I easily get into the support group of ESA because I use an electric wheelchair. The irony is that this is not why I stopped work. In fact I studied and worked for many years while using a wheelchair. It was my chronic illness which eventually stopped my career.
Typically, barriers arising from my wheelchair use are access issues resolvable with enough support. My chronic illness affects my ability to do the job at all and is thus arguably more of an obstacle. But when I look at the ESA form I am very unsure whether I would qualify based on my chronic illness alone. Common symptoms, eg pain, exhaustion, memory loss, “brain fog”, cognitive dysfunction, and generally “ill health” are not specifically captured on the form, but affect both ability and reliability to do any job.
Similarly the needs assessment for accessing social care is usually biased toward a “tickbox” visible physical impairment. Fluctuating invisible conditions often struggle due to their complexity and potential need for flexibility.
In employment we strongly benefit from the activism of the past decades to obtain physical access and reasonable adjustments of a purely physical nature (eg equipment etc). Reasonable adjustments for a chronic illness tend to be more tailored to the individual, may fluctuate and require flexibility. Obtaining them tends to be far more difficult and in many cases regarded as a favour rather than an obligation (eg allowing different work hours).
Of course, this isn’t to say accessing support for a physical impairment is easy. Accessible housing is almost non existent, wheelchairs often have to be purchased, benefits criteria are overly strict, employers are prejudiced, care hours may be insufficient, public transport is still not accessible. This is rapidly worsening with all the recent cuts (eg ILF, AtW, DSA, PIP). Nonetheless the support system is there even if we have to fight all the way.
A clear impression from social media is that people with chronic illnesses form a community irrespective of their exact illness. I think this is why the term spoonies is liked by so many, due to that sense of community it can give people. But so far we have not campaigned for our rights and support as other disability groups have in the past.
Up until recently the main reason for this was simply an inability to communicate, which has now improved with the internet and social media. But that communication has not yet evolved into any meaningful action. When it does we will hopefully be able to access the support we require to lead more comfortable, independent and integrated lives.
by Dr Sarah Campbell.
Sarah completed her mathematics studies and then worked as a university academic while juggling both a chronic illness and a more “traditional” purely physical impairment. This led to a particular interest in how the social model and current support relates to both. Eventually work became impossible and she got involved in disability activism online, becoming the main co-author of the Spartacus Report (Responsible Reform) in 2012 and later leading the “Past Caring” campaign.
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