Are you Disabled?

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.”
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 problem to be fixed 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:

“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.

 

 

 

Advertisements

15 thoughts on “Are you Disabled?

  1. Thank you for raising critical questions.

    I distinguish misopathy from ableism. There is overlap, but it is where they do not overlap where certain diseases need the most support.

    Liked by 1 person

  2. Thank you for this article. I like your map of disability – it’s a very good way of conceptualising the differences. There may be other dimensions too (eg the extent to which your impairment affects mental as opposed to physical functioning – though as we know, some like ME affect both. And whether you were born with it or acquired it later in life.)

    I personally still find the social model very useful for understanding disability, including mine as a person with ME. The social model is a model of disability, not a model of impairment and was never intended to be. Impairment (ie what’s ‘wrong’ with you) is the excuse for disability (the barriers, oppression and exclusion people with impairments face when trying to participate in society.)

    If we had a society with no disability (which would mean, amongst other changes, that all buildings were level access with hearing loops, education, leisure and work were structured so as to allow maximum participation of all, and there were inclusive and understanding attitudes towards people with impairment, as opposed to the pervasive and vicious blaming of disabled people fostered by the UK government) then my life as a person with ME would go far better.

    But as it is, many events and activities exclude me because my stamina is very limited and unpredictable and I can only participate in anything (if at all) for short periods. But activities don’t need to be organised the way they are. More leisure and educational events could be presented in short slots, or offered online or in people’s homes, and the world of work could be organised very differently (this would require a revolution though!) If we did live in such a utopia I would (without research leading to effective treatment) still have the debilitating and nasty symptoms of ME. But I would be much more able to participate in society than I can now and would benefit hugely from that inclusion.

    Thanks for the chance to contribute my thoughts.

    Liked by 1 person

    • BTW the map comes from Limited Capability blog (@octoberpoppy).
      I agree that the Social Model does have a lot going for it. A lot of disabled people would be worse off without it, including us. I just don’t feel it is sufficient for people with a sickness type of disability. The one that had the most potential is BioPsychoSocial but that’s been turned into something else, that is actually toxic to our wellbeing.

      Like

  3. Really interesting post. I have ME/CFS and consider myself disabled. I worked with people with disabilities of all kinds, visible, invisible, congenital, acquired, before becoming ill, so that probably feeds into my comfort with it. For me, it’s just a statement of fact, and there isn’t an emotional charge, or a political charge, that comes with it. It’s just a way of describing the fact that I am unable to participate in most normal activities of daily living even with reasonable accommodations.

    I don’t see disability or ME as part of my identity as such, but I don’t think I have a conventional take on identity, which is just as well, as ME sure can strip away what many people see as key parts of their identity.

    In my training the WHO definition of disability was key “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.” http://www.who.int/topics/disabilities/en/

    I really like this document, which is guidance on what does and does not constitute a disability in legal terms in the UK – it goes through examples of people with CFS, rheumatoid arthritis, cancer, depression etc and when they would and would not be considered to have a disability. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85038/disability-definition.pdf

    Here are a few quotes from it:
    “A disability can arise from a wide range of impairments which can be…impairments with fluctuating or recurring effects such as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression and epilepsy.” (p.8)

    “A person has a disability…if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.” (p.5)

    “An impairment may not directly prevent someone from carrying out…day to day activities, but it may still have a substantial adverse effect on how the person carries out those activities…A man has had chronic fatigue syndrome for several years. Although he has the physical capability to walk and to stand, he finds these very difficult to sustain for any length of time because he experiences overwhelming fatigue. As a consequence, he is restricted in his ability to take part in normal day-to-day activities such as travelling, so he avoids going out socially, and works from home several days a week. Therefore there is a substantial adverse effect on normal day-to-day activities.” (p.45)

    A particularly mild case of CFS, and I don’t think “avoids” is the right term, but still. It can be important to use these terms like “substantial adverse effect”, “long-term”, “normal day-to-day activities” when applying for social welfare payments and the like, even if you don’t think of yourself as disabled.

    In my personal case of ME, there are no societal changes that would make it significantly less disabling. Two things would help: health professionals being more willing to see people at home, and online access to things like art exhibitions, meditation classes. But for my disability to reduce, I need an immunomodulator.

    Great post, important discussion.

    Liked by 1 person

    • Thanks, useful quotes. It is definitely worth knowing the lingo when applying for benefits. BTW in UK the NICE guidelines are we should have home visits but I’ve never been brave enough to push that, opting for phone appointments as a happy medium.

      Like

      • Very interesting re NICE & home visits. Had those quotes for something else-made for a long comment but hopefully will come in useful for someone! Btw biopsychosocial model was a positive in my training too-all about getting clinicians to be more holistic, think about bigger picture, ensure real needs were addressed-not what some have twisted it into now.

        Liked by 1 person

  4. Pingback: Are You Disabled? – The York ME Community

  5. Pingback: Are people with ME disabled? | WAMES (Working for ME in Wales)

  6. I’m definitely disabled. Formally, I get Disability Living Allowance. Practically, there are many things that the “normal” “able-bodied” person could so that I cannot: drive a car, walk to the village shop…
    I actually like the term “crippled.” Partly for penetration value, preempting the “but you look OK” line, and partly because there’s a truth there. I creep along but that means there is much I can do *given enough time* which is a different angle on a straightforward “I can’t do that.”
    “Is the game worth the candle?” is very much a ME/CFS thought.
    Especially when watching a TV programme is more effort spent than relaxation.

    Liked by 1 person

  7. Pingback: Persuasion Savvy Advocacy Challenge | Tips for ME

  8. Pingback: Christmas Giveaway | Tips for ME

  9. Pingback: Minor Ailments Major Obstacle | Tips for ME

  10. Pingback: Ascribed and Chosen Identities in Chronic Illness | Tips for ME

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s