Accessing Support: A system geared toward physical impairments

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.

Sarah Campbell

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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This Post Has 17 Comments

  1. This is so true, I have MS and most of my symptoms are invisible, because of this I had to fight to be put in to the Support group of ESA and the stress of having to go before a magistrate caused me to have a major relapse from which I have never fully recovered. I am dreading the day I have to change from DLA to PIP.

  2. What Sarah says is very true – there is little understanding or support for people with chronic illness. The isolation we may experience with both a chronic illness and a physical or sensory impairment may also lead to anxiety and/or depression. Throw aging into the mix then both adequate health and social care are hard to find.

    1. I couldn’t agree more. I am totally blind and have major Chronic conditions such as Neuropathy, Gastroparesis, Arthritis and find one day might be not too bad, the next I am in pain just flexing my fingers. I play guitar and write songs. That now is becoming more painfull. I never felt pain in my wrists and fingers till recently when I was writing. Another problem is that I am taking 8 Tramadol and 8 paracetamol a day. As well as sometimes a jell to ease the joint pain.

      I do suffer from clinical depression, anxiety and isolation. I detest lonleyness but there is nothing I can do about it. The rejection by society is much worse than it once was. Good luck to everyone in the group and I hope it gains momentum to become a resource for people with Chromic disabilities.

  3. This is so true. My own experience as someone with an invisible chronic illness (ME/CFS) is that although I am no longer able to work because of the severity of my condition I have had to fight to receive any ESA at all – I was successful at Mandatory Reconsideration in that I was put into the Work Related Activity Group – and I am now having to appeal at Tribunal to try to access the Support Group.
    Also being able to perform something regularly, reliably and to an adequate standard receives no consideration in this process.

  4. Thanks for this great post Sarah. I’m sure many readers will identify with your experiences, and I do agree there is a great need for those of us with a chronic illness to be identified as a separate group to disability.
    I suggest that ‘illness’ is not identified in assessments because government commissioned research identified all ‘illness’ as being psychosomatic, which should be disregarded as only disease matters, and the government are still using this discredited ‘research’ to justify the removal of as many claimants as possible from disability benefit.

    1. Thank you Mo.
      Perhaps it is a matter of language but I don’t know if I would say “separate to disability”. I consider people with chronic illnesses to be disabled and full members of the wider disabled community.
      However it is becoming clear that we form quite a cohesive impairment group whose needs have been largely overlooked by policy makers, sometimes by fellow disabled people and wider society. As a result we are trying to function in a system which is not set up for us in any area. Square pegs and round holes spring to mind!

  5. Thank you for the post. It’s reassuring, if frustrating, to know that others are in the same position.

    Awareness seems to be the issue as far as I’m concerned. I battled to obtain some form of ill health retirement from my employer only to be stymied at every turn by ignorance of my condition. I had to educate everyone along the way as to why I needed help. Help that I was eventually denied.

  6. Thanks for such an excellent post. I am going to share it with my care team!

  7. Excellent post. I am going to share it with my care team!

  8. Thank you so much for this post, it reflects so much of my own experience. It’s intensely frustrating to try and interact with the benefits system where my most limiting issues are just not acknowledged as potential problems anywhere on the forms.

    So looking forward to reading more and contributing to this project wherever possible.

  9. A movement has started, check out #MillionsMissing and #Unrest

  10. Hello everyone,

    This quote from Sarah’s post sums up the situation people with ME are in:
    “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.”

    The benefits system is deliberately designed to exclude those of us with this kind of fluctuating invisible condition because we don’t fit the forms, accrue too few or no points and are denied benefit – even if we’ve paid into the system through a working life.

    The assessors routinely ignore evidence and/or incorrectly record details of interviews so that people are forced down the appeals route.

    We’re an easy target for an inhuman social don’t-care system and it’s about time we used our voting rights to address it.

    Rant over…


  11. I suffer from chronic pain which developed following an accident during which I suffered spinal cord crushing at neck level, for which I required surgery. The aftermath has left me with an invisible disability, I regularly get persistent pain, inevitably over the years depression and isolation have developed. Social media was wonderful for me as it enabled me to talk to other people with invisible disabilities. Disability and illnessess are complex, not easy to pigeon hole, even with a DWP computer. For myself, I had a physical injury & degeneration , visible by scanner but not obvious to the human eye. Pain cannot been seen and is hard to measure, the same is with fatigue. The chronic nature of pain/fatigue/illnesses, degenerative process often leads to social isolation and feelings of low self esteem and then mental health problems. So my opinion is that people who have chronic pain/fatigue and illnesses are definitely disabled but at the moment we exist in a kind of twilight zone – our disabilities are not obvious to the naked eye, they are not immediately life threatening, do not require immediate surgery or drastic medical treatment, so the Docs can’t cure it with surgery or a pill – and they can’t see something visible. We are a conundrum, to a bad doctor, we are a nuisance, to a bad government we are a problem. A problem that has to be beaten back to work with these crushing ESA/PIP assessments, or driven further into poverty and more isolation. Maybe I sound a bit angry ….. well I am, yesterday I learned that a friend who was one of the invisibles in the twilight zone, she has Fibromyalgia, chronic pain and gastroparesis, commited suicide because she could no longer cope with the assessments she was currently enduring an ESA assault. Now she is dead, her funeral is on Thursday…… Sarah your article, this inclusion project is so desperately needed, people are desperate and dying because they cannot access support. Chronic illnesses, disabled people, the invisibles, whatever we want to call ourselves, but at the end of the day these are real people in need, good people, with so much to offer if given the support they need, these lovely, good people are pouring through the cracks.

    1. Thank you for your eloquent insights and I’m so sorry to hear of the tragic death of your friend. Your image of existing in a twilight zone is so apt. I think many people will identify with what you’ve written. Sorry it’s taken me so long to publish your comment but thank you again for posting

    2. Thank you for your eloquent insights and I’m so sorry to hear of the tragic death of your friend. Your image of existing in a twilight zone is so apt. I think many people will identify with what you’ve written. Sorry it’s taken me so long to publish your comment but thank you again for posting

    3. Sorry to hear about your friend, not an isolated incident unfortunately, thanks to the ferocious assault by successive governments, even the Limpdems allowed the Tories to pile on more misery and despair.
      It reminded me that we tend to interact with each other more, on social media, at meetings and groups, as we are not gainfully employed and making more profits for the elitists in government and positions of power. Thus we hear more of the pain, poverty and inhuman abuse at the hands of the system meant to care for us.
      I’ve been campaigning for years and it seems to have had no effect. Things only get worse, UC is the most cruel, heartless regime of the lot, skillfully dressed up as a shiny new streamlined system that would make work pay and provide for those unable to work.
      What a sick joke that was.

  12. Excellent post. Is it okay if I share this with my son’s therapists?

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