All sick and disabled people are beginning to experience the same social implications that people with MUS (Medically “Unexplained” Conditions) suffer:
- Lack of Support
- Uncertainty,
- Lack of credibility and legitimacy, and
- An impact on self and social identity, to name a few.
According to Dr Sarah Nettleton, who has researched the impact of not being given a disease label or diagnosis, these are just some of the themes which characterise the MUS experience. In this article I will be explaining that the MUS experience is no longer exclusive to people with MUS.
In this article will draw some parallels between the MUS experience and what is happening to all long-term sick and disabled people in this country. This is my analysis, using some of the headings from Dr Sarah Nettleton’s research paper:
Lack of Support
- Disabled people are facing the removal of recognition, understanding, and compassion. Society as a whole is being told by newspapers and politicians that sick and disabled people are undeserving scroungers. The support that was once in place within society, both in spirit and in practice, is being rapidly dismantled. Disabled people are more likely to face interrogation and abuse than support and understanding.
- People with disability are increasingly experiencing feelings of isolation, desperation, and the sense there is no where to turn to for help. The government is not listening, the general public is widely misinformed and hostile towards disabled people. Meanwhile, the DWP (Department for Work and Pensions) — who administers disability benefit and, in so doing, authorises the social “passport” that gives ones disability social legitimacy — is not just rewriting the definition of disability but undermining the credibility of all benefit claimants.
Uncertainty
- The Conservative-led Government is cutting services so fast and so deep that it is impossible to plan for the future and know how to understand and accommodate the proposed changes in the Welfare Reform Bill. We can’t calculate their effect on our lives, we are uncertain about whether we will ‘be okay’.
- When the government first published its intention to “reform” Disability Living Allowance (read “abolish”) and replace it with PIP (Personal Independence Payment), its intention was clear: reduce the number of claimants by 20%; ignore the fact that fraud and departmental error adds up to a mere 0.5%. So while we could be sure that the government intended to reduce the eligibility requirements we were uncertain, and remain uncertain, exactly how eligibility will be established and how we will be judged. (“Uncertainty is compounded by lack of information”).
- Disabled people are asking themselves “when will this reform effect me?”, “how badly will these cuts effect me?”, “How can I possibly cope with more stress and uncertainty?” (Disabled readers please contribute to this list in the comments section below).
- With uncertainty about how government cuts will effect the support and services, planning for the future becomes impossible.
Relationships with doctors
- On the one hand doctors are given more responsibility by the government (managing their budgets) and on the other hand are told that their medical opinion no longer has the authority or reliability with which to base a decision for benefits (instead an independent company is employed). Where patients need reassurance and support more than ever, doctors are being worn down and disenfranchised.
- In the same way a person with a medically unexplained condition seeks acknowledgement of their experience from their doctor, a disabled person now arrives in the same position: equally anxious, potentially suicidal, and uncertain about the social legitimacy of their medical condition. What both groups now share is an emotionally fraught situation:
- The patient is wanting the doctor to authorise their experience of disability with words that can be universally understood: by the nosy neighbour, the government agency, the employer, the family, and the patient themselves who is suddenly feeling much less confident about explaining their condition to themselves and others.
- The doctor is wanting to make the situation better but is powerless to do so and struggling to accept their limitations because they went into the profession to ‘fix’ problems and ‘make people better’.
Lack of credibility and legitimacy
- I think this is the no. 1 biggest issue facing people with Medically Unexplained Illness, and now the whole population of sick and disabled people. When you don’t get better, people want to know why. When your health limits your ability to function, people want to know why. But people with health problems “just want permission to be ill”. Permission to have a bad day without being labelled a faker. Permission to have a good day without being labelled a scrounger.
- The software designed for ATOS Healthcare Work Capability Assessments has been described as reminiscent of UNUM Insurance “disability denial software” because we are facing a check-box system determining the legitimacy of a persons medical condition and, in the face of extra cash per failed claim, an incentive to contradict the informed opinion of a GP or specialist. Meanwhile, the media, politicians, and even the DWP are publishing misleading information about the credibility of sick and disabled benefits claimants.
Influence on the ‘self’ and social identity
- Although the sick and disabled recognise the authenticity of their symptoms, as verified by their doctors and their daily experience, they can’t help questioning themselves when they have a good day. Many may find themselves asking “Do I deserve disability benefit?”, “I feel better than I did yesterday, am I a scrounger because I am finding it easier to move today?”.
- In fact I think the impact on a persons sense of self, personal wellbeing, and social identity is huge. If you are effected by any of these issues I would appreciate it if you would comment on this in the comments section below.
Searching for explanations/justice
- Although some people can accept that reform may be needed, it's still important to them that they see changes that reflect the experience of disabled people and their needs. The government have scared disabled people and their friends. They are asking:
- “How will eligibility be decided?”
- “How will you protect the wellbeing of disabled people throughout the process of reforms?”
- “How can you commit to cutting 20% of claimants on the assumption that half a million people don’t ‘deserve’ or ‘need’ to access the funding, care and support they require to function and live ‘normally’, despite their disability?”
To conclude, a sinister shift has occurred in the fabric of our society, spurred on by political propaganda. It is no longer enough to have a medical diagnosis or receive disability benefit. The existence of disability is under dispute. If you are effected by any of these issues, I welcome your comments below and would especially love it if you expanded on any of the points I have made above.
