Values & Policy Initiative
This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in a statement of principles and values as well as a formal policy platform, which the community will ratify with an up-or-down vote. Visit our Values & Policy webpage to see published articles, and our timeline for discussion. #MEActionVPI
Join our upcoming Community Call to discuss our values and tactics on Wednesday, October 30th at 10 am PT / 1 pm ET / 6 pm UK
For most of us myalgic encephalomyelitis (ME) is enduring, substantial and has a significant impact on our life. These are the very requirements of defining a disability.
Do you identify as Disabled, though? I find a surprising number of people with myalgic encephalomyelitis (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 us as disabled; we hope to get better so don’t want to take on a marginalised self identity. We weren’t born with the disease (although, if we have a genetic predisposition does that change this thinking?). We initially got sick rather than injured so tend to think of ourselves as ill. Sometimes our symptoms are mild and not substantial; we are brought up to think of disabled as using a wheelchair and many of us don’t and, so on.
Does it matter? I think what 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? #MEAction’s co-founder, Jen Brea, made an interesting point on Twitter once 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 for me to hold onto internal narratives around, “When I am well, I will..,” which 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 want to 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 if I became well.
Models of Illness and Disability
There are different theoretical models or perspectives used to understand illness and disability. These models are culturally constructed and people may not be conscious of using them. I think these models are worth discussing a bit more in this article in relation to ME and disability. In my opinion none of them are a good fit for us.
In brief, the Medical Model locates the problem in the body and locates the solution in the hospital or doctor. It can be seen as paternalistic and outdated, treatment is imposed on the patient. The Social Model locates the problem in society and locates the solution in changing attitudes or the physical environment. It tends to be the main view of disability charities, but is difficult to apply to impairment caused by illness.The Biopsychosocial Model potentially locates the problem in an interplay between the body, mind and society, but usually in practice locates the solution in individual thought and behaviour change. It can be misused as a cost saving exercise or as patient blaming, relocating responsibility from the State to the individual.
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.
Social Model of Disability
The Social Model is a grassroots, movement of the people as the theoretical backbone to the Disabled People’s 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 for us it becomes a problem that tends to be avoided as an inconvenient truth. 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. When I was working on the Chronic Illness Inclusion Project I had all of these adjustments, and colleagues who understood my impairment, but nothing was sufficient to overcome severe energy restriction. People with ME actually do need to be fixed at the body level.
We need the Disabled People’s Movement to acknowledge the complexity of different types of impairment.*
Contributing to the Debate
I think this is a useful way to conceptualise how we fit in, as described by the Limited Capability blog.
“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.
Moving forward: Advocating for “Energy Limiting Chronic Illness”
I have been involved in research** on the Chronic Illness Inclusion Project. The rationale for this project has been:
“Internet and social media have fostered a burgeoning community among people who identify as sick or ill (see also #spoonie), rather than, or as well as, “disabled”. People who, due to the severity of their symptoms, cannot access physical spaces of assembly or activism despite adjustments and adaptations, now have a medium for communication and participation.
As yet, this online community has no formally constituted, user-led organisation. It has no collective voice, broader than the individual diagnostic label, with which to resist and challenge the particular forms of restricted citizenship experienced by people with chronic illness. Their lived experience remains below the radar of policy makers and service providers.”
This lack of representation is a significant barrier to shaping the policies that affect their lives. It has been especially detrimental in the context of welfare “reform”. Under a flawed “biopsychosocial” model, people with long term physical and mental health conditions have been targeted by successive government projects to redefine disability and deservingness in order to reduce entitlements to social security. As a result, opportunities for independent living have reduced significantly for this group.
The need to gain visibility and legitimacy as a constituency of disabled people, and to have their voice heard by the broader disability rights movement and policy makers has never been more urgent.
This small project has combined qualitative and survey methods to explore issues around self identification and priorities for change. The results are yet to be fully analysed but will feed into a Manifesto style report.
From preliminary analysis it’s looking like energy impairment and energy-limiting chronic illness (ELCI, pronounced Elsie) are the preferred terms for self-identification among people with long-term health conditions similar to ME. This is a wider category of Sick disabled people who have the shared lived experience of needing to budget energy, or avoid change in routine, in order to manage symptoms. Essentially it is a policy maker, friendly translation of the term “spoonie,” which could form a meaningful grouping of conditions within the Disabled People’s Movement.
It is important to recognise that ‘difference’ can mean variation rather than tension and conflict (as Claudia Gillberg pointed out on Twitter). Most other disabled people do want to include us but they don’t have our lived experience. They need to hear our perspective on impairment, adjustments and priorities for change and we need to be represented when disability policy is discussed.
This is best achieved within a meaningful grouping of the various Energy Limiting Chronic Illness organisations and by us, as individuals, raising our voices inside the Disabled People’s Movement.
Visit our Values & Policy webpage to read published articles, see the timeline for discussion and join community calls. #MEActionVPI
About the Author: Jenny lives with fluctuating ME and other Energy Limiting Chronic Illness related impairment. During milder phases she has worked in the disability sector. Her most recent roles have been as a researcher for the Centre for Welfare Reform working on the Chronic Illness Inclusion Project and volunteering as a NICE (UK clinical guidelines) rep for #MEAction UK.
*A case in point: on my first day as a new employee at a Disabled People’s Organisation in 2011, there was a high profile disability activist speaker who claimed we should abandon low rate Disability Living Allowance (DLA) claimants to the benefit 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 fibromyalgia 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 the 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, ending up in relapse.
A combination of participatory action research methods and surveys will be used to develop the following research agenda in stages:
1.*Self-identification: What are the core features of the online community that unites under the banner of #spoonie #invisibleillness or “Sick”? How can this lived experience be made intelligible to those outside the community?*
2). Exploration of the social model of disability using Duffy’s “7 keys of citizenship” concept to prompt discussion about aspirations, autonomy, and dignity.
3) Identifying barriers: using the 12 pillars of independent living, prompt discussion of the attitudinal, organisational, environmental and political barriers to independent living.
4) The co-production of a manifesto for social change within the PAR forum.”