TIPSFORME blog: Are you Disabled?, by Jenny, 15 April 2016

On Twitter there have been some interesting discussions this week about disability identity and ME. I think this is worth everyone with ME thinking about. For most of us ME is enduring, substantial & has a significant effect on our life. These are the very requirements of defining a disability.

Do you identify as Disabled though? I find a surprising number of pwme don’t. I understand this, it took me 10 years to get to that place myself and for most of that time I was working with other disabled people.

There are a number of reasons why: it is emotional for everyone to come to terms with disability and with ME other people don’t tend to label you as disabled; you hope to get better so don’t want to take on a negative self identity; you initially got sick rather than injured so tend to think of yourself as ill (if we have a genetic predisposition does that change this thinking?); sometimes your symptoms are mild and not substantial; we are brought up to think of disabled as using a wheelchair and many of us don’t etc.

Does it matter? I think which conclusion you come to is your personal business and not for me to say. I shouldn’t define your identity for you. However, I think it is important enough an issue to warrant giving it serious thought. Benefits of identifying as Disabled include becoming part of a wider, more powerful community (1 in 5 adults of working age are disabled); taking advantage of disability rights against discrimination; claiming more benefits and disability discounts; contributing to wider debates about what it is to be disabled and making sure pwme are included.

Will you be Disabled when well? Jen Brea made an interesting point this week that even when she’s well she’ll still identify as Disabled. I’d never thought about that before, but I think I’ll be the same. It is important to me to hold onto internal narratives around “when I’m well I will” this seems to somewhat contradict the concept of having a fixed, Disability identity. However, if identity is more of a way of seeing the world, then I won’t lose that when I recover. ME has changed me. I won’t be the person I would have been without it. Just as a queer person doesn’t lose the knowledge of a marginalised viewpoint or homophobia when they date someone of the opposite sex, I won’t lose my Disability identity.

Models of Illness and Disability

In my last post I wrote briefly about different models of illness and disability. These models are culturally constructed and people may not be conscious of using them:

“The previously predominant model was the Medical Model which sees illness purely as a physical problem within a patient’s body, waiting to be fixed by a doctor. In recent years the BioPsychoSocial Model has become widely accepted, particularly in psychology itself (I’ve written about this previously see here). This Model tries to hold in tension the complexity of health on different levels. For example, someone may have a condition that is somewhat genetic, triggered by something in the environment, exacerbated by stress at work and perpetuated by a lack of support from society. It is well accepted generally to say that you follow a BioPsychoSocial (BPS) Approach, which I think is worth saying because in the ME community this can seem like a swear word!

[Another model which isn’t so relevant here is the Social Model of Disability. In this view we are solely disabled by barriers in society. This could be lack of ramps, discrimination, poverty etc. It applies well to some disabilities but is a bit clumsy when applied to ME, in my opinion. It tends to be the main view of disability charities]”

I think these models are worth discussing a bit more in this post in relation to ME and disability. In my opinion none of them are a good fit for us.

Medical Model

The attitude of the Medical Model is one that a lot of pwme would initially welcome. It situates the problem as within our bodies, so is conducive to biomedical research and being prescribed actual medicine. However, it is also the Model which locked up people who had learning difficulties for life in large hospitals. If you scratch the surface, I think the dynamic of doctor-patient relationship that springs from this way of thinking is unsatisfactory for pwme too. It fosters the kind of paternalism that is likely to dismiss patient experiences, especially if doctors haven’t done the right test to find where the problem is in the body.

BioPsychoSocial Model

Theoretically, this could be a good model for the multisystemic complexity in ME. There is scope for holding in tension different levels of explanation, and therefore treating the whole person. Unfortunately this model has been misused to such an extent that it is hard to believe it can be redeemed (see my last post on illogical research funding and previous more optimistic post on BioPsychoSocial Stress).

In a report out today

“the Government relied on research which seemed to support the biopsychosocial model of disability – a model which could be taken to imply that illness or disability was at least partially the result of the attitudes held by sick or disabled people themselves. Although the language of the biopsychosocial model is clinical, there is a severe danger that, in the wrong hands, it can be used to support ugly prejudices.

The evidence used to support the biopsychosocial model is often weak, or misleadingly presented; however in 2006 the DWP funded a group of academics to begin the PACE trial which the Wolfson Institute of Preventative Medicine describes as:

“This large-scale trial is the first in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).”

Results from this trial were first published in 2011 and were presented as an exciting success for biopsychosocial interventions. Since then the Government has gone on to use the biopsychosocial model, and the theories underpinning it, to suport its general approach to benefits and welfare reform. For instance, in 2012 Lord Freud defend the ‘reform’ of Disability Living Allowance in the House of Lords by saying:

“…we have gone for the biopsychosocial model. That model has now garnered very significant academic support, as those noble Lords to whom I sent that very interesting piece of research will recognise.”

Unfortunately it turns out that the research that Lord Freud refers to is often deeply flawed. In this detailed report, George Faulkner explains what went wrong and the lessons we should learn. While campaigners continue to demand that the full trial results be published, what is already clear is that the results were manipulated to give a much greater appearance of success than should have been claimed. It is also worrying that some of those involved are closely connected to private insurance companies, such as, Unum, which seems to be lobbying Government to promote private health insurance, instead of our public social security system.

Growing numbers of the international scientific community have begun to express concerns about the research central to this report, for instance, recent discussion includes:

PACE: The research that sparked a patient rebellion and challenged medicine

Results of the PACE follow-up study are uninterpretable

An open letter to The Lancet, again

George Faulkner’s powerful report usefully describes many of problems with the PACE research and explores its impact in relation to debates about welfare reform.”

See www.centreforwelfarereform.org for the full report

The BioPsychoSocial approach has been co-opted to an agenda about saving welfare money:

“I think the biggest break I got was that Waddell and Burton had put out a document three months earlier that said that work is good for you. There I was looking at a system built up over a number of years that effectively protected people from work if they’d got a problem – single mothers, disabled people – and I thought to myself, this is bizarre. Here we have developed a system on entirely the wrong premise which basically makes people ill.”
Lord Freud explaining what guided his approach to welfare reform…
It was recorded that Wessely claimed:
“As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse.”
…
Both major parties and much of the media have been emphasising the role of attitudinal problems in preventing those with disabilities from finding work, and concerns that disability benefits were trapping people in a culture of dependency…

Waddell explaining how the biopsychosocial model was gaining political influence:
“It is all about money. The main thing was to persuade the [then Labour] treasury that there was an opportunity for keeping costs down, particularly over the longer term.”… Their discussions explained how, within government, the antipathy caused by the view that the biopsychosocial model lacked a hard evidence base had been overcome by the softer evidence of “authoritative and expert opinion”.
Unfortunately, those selected for their authoritative and expert opinions may not have risen to positions of influence because of their moral integrity and intellectual rigour. Systematic reviews were also described as being important for changing the views of key opinion makers, yet systematic reviews may merely combine results from a number of different non-blinded trials, putting aside problems with bias and making potentially misleading results appear more reliable than they truly are.”
Read more from p28 onwards of  “IN THE EXPECTATION OF RECOVERY” | RESEARCH DISTORTED BY POLITICS

It is hard to recognise this as the theoretical model I learnt about at university in 1998-99. However, meaning isn’t fixed and I think biopsychosocial has now been perverted to this blaming of patients, cutting of costs and misleading results.

Social Model of Disability

The Social Model is a grassroots, movement of the people as the theoretical backbone to the Disabled Rights Movement. This sounds more promising. However if you take a hardline stance on this model, the disabling problem can only be located at the society level, the limitation is never within the individual. This works if you have a specific, stable condition and are otherwise well (for example for amputees or people with a sensory impairment). Once society adapts to their needs then they no longer experience barriers to participation. Obviously full adaptation has yet to happen, but it is quite conceivable with the right commitment.

However, if there are no satisfactory adjustments to make society accessible to you it becomes a problem. Post Exertional Malaise can’t fully be solved at the society level. There are things that could help: flexible hours, an accommodating benefit system, normalising working at home. These things would not be sufficient for me to go back to work and don’t help me feel well. People with ME actually do need to be fixed at the body level.

I was upset on my first day as a new employee at a disability charity in 2011: there was a high profile disability activist speaker who claimed we should abandon low rate Disability Living Allowance claimants to the cuts, as collateral in order to safeguard those with more severe disabilities. In the course of his speech he also talked about a case study of someone with severe fibromyalgia, and he was very sympathetic. I realised with frustration that as someone with a stable, physical disability he didn’t quite get that this could be the same person. If you have fluctuating conditions like fibro and ME you can be one week at a Low Rate DLA level of functioning and the next in a relapse unable to get out of bed. I actually became a classic example of this: at that time of his speech on Low Rate Care but within a few months qualifying for High Rate Mobility, Support Group ESA and bedridden. What really, really doesn’t help people like us is to be forced through financial necessity (benefit cuts) to work beyond our energy envelope and ending up in relapse…

Most other disabled people do want to include us but they don’t have our lived experience. It is important to recognise that ‘difference’ can mean variation rather than tension and conflict (as Claudia Gillberg pointed out on Twitter) but we need to be in the conversation.

Contributing to the Debate

From the Limited Capability blog I think this is a useful way to conceptualise how we fit in:

A Map of Disability

“The idea is this: all forms of disability/impairment* can be located along two axes: Well to Ill, and Visible to Invisible… Ultimately, the aim is to better distinguish what kind of adjustments people need in order to be included; and understand what kind of discrimination they may face. The Disability Rights narrative has largely been mapped from the vantage point of the Well and Visible ends of the spectrum. The forms of prejudice and discrimination encountered from this position are relatively well documented. But social oppression and disablism is equally, though differently, experienced from the opposite vantage point: the Ill and Invisible ends of the spectrum.”

I think pwme have a role to contribute to the conceptualisation of disability in this way, and that will help those with rarer conditions who are disabled but not Well-Visible. Also within the pwme community we will be at different places on this map at different times. For example, I am now visibly disabled when I go out: with my powerchair, sunglasses and wide brimmed hat nobody mistakes me for a non-disabled person! It is useful for me to get advice on wheelchairs from the wider disabled community who have been using them more. I definitely identify as Sick/ill disabled though, so I am Sick-Visible disabled. I may have more in common with someone who has MS or Parkinson’s than someone with mild ME, in terms of lived experience.

Conclusion

I wonder if this ME Awareness May we could maybe do more to reach out to other disabled people? Partly as camaraderie and partly to make sure the needs of People with ME are heard.