Chapter sixteen
AM I A 'DISABLED PERSON'? — OR NOT?
Some thoughts and definitions
|
|
Chapter sixteenAM I A 'DISABLED PERSON'? — OR NOT?
|
|
Some thoughts
Definitions
Registering as disabled
Finding out more
Talking about disability may make some of you cringe and say 'that's not me'. Disability often conjures up the image of a severely disabled person, possibly in a wheelchair, and with a physically static and visible condition, unlike many of us.
Sometimes we may feel, and be, very disabled; sometimes quite the opposite. Chronic inflammatory arthritis is a see-saw experience, and many of us with largely invisible arthritis don't fit tidily in either the 'disabled-bods camp' or the 'non-disabled-bods camp'. If I'm having a 'good' day, or if my problems are invisible, then people with a very visible disability or a benefits assessment officer may think I'm a fraud if I claim to be a disabled person. However, on a 'bad' day I'd be disbelieved if I claimed to be anything but! Sociologist Carolyn Wiener (see chapter 12) described the various ways we may deal with the dilemma.
Would that we were all regarded as being in one camp, a camp of human beings, but back to reality. Why shouldn't we, instead of considering it a dilemma, turn it to our advantage? The arthritis may sometimes dictate which camp's label is most appropriate at any particular time, but we can also to some extent choose which to wear when. Why shouldn't we choose whichever is most advantageous at a particular time? Even better, let us, at the same time, educate society into understanding that there are such things as 'invisible disability', 'partial disability', 'intermittent disability', 'variable disability', 'fluctuating disability'.
Let's also educate society into understanding another crucial characteristic of chronic inflammatory arthritis, a difference often misunderstood, especially by officialdom, ie the handicap or disadvantage we may experience resulting from 'the interaction of different disabilities', clearly described in a World Health Organisation (WHO) report:
"If one sets out to measure the functional ability of a person with severe arthritis in, for example, the kitchen, one is likely to find that many individual activities are within [that person's] capacity. However, effective preparation of a meal calls for integration of these activities, particularly by ease of movement between one part of the kitchen and another, and it is especially at this level that the person with arthritis experiences serious difficulty. Similarly, affected individuals are usually capable of dressing themselves but the fact that the process may take well over an hour cannot help but distort organisaton of the day's schedule." (WHO's International Classification of Impairments, Disabilities, and Handicaps, a manual of classification relating to the consequences of disease, Geneva, WHO, 1980)
Back to existing labels. Why bother with the disabled label if you don't feel disabled? Well, for better or worse, it's a form of shorthand for 'someone with special needs', widely used by doctors, social workers, employers, etc, and from time to time, whether we like it or not, each of us will find the label applied. We do have special needs, eg functional problems, mobility, employment, finance problems to deal with. Using the label does at times help, when, for instance I ask for a special seat in the theatre, or apply for help with adaptations. It can help give us legal protection too, if we need it, under the Disability Discrimination Act. There's also the 'stand-up-and-be-counted' advantage, when using the label means we can exert influence by the power of numbers.
Sometimes, swallowing an aversion to the disabled label can even help to lessen a disability. — For instance, it's well worth looking at gadgets 'for disabled people', or special arrangements 'for disabled people' in holiday guides (eg ground floor bedroom in a hotel, or special arrangements at the airport). That 'disability' information may be all you need to make you 'non-disabled' again.
Problems come if the label's misused by other people, the 'Does He Take Sugar?' attitude, for instance, where the disabled person is disregarded, a 'non-person', or when people talk about 'the disabled' as if we're a group, all alike, and as if our most important characteristic is lack of ability, instead of all being very different people each with different talents and characteristics. There's a world of difference between someone struggling with the pains and stiffness and fatigue of RA who may not be able to raise a cup of tea to her lips let alone make one, and a strong-armed wheelchair-using marathon athlete.
Talking about 'the disabled' all too easily leads people into the trap of underestimating any individual's capabilities, eg in education or employment, thus imposing artifical restrictions and additional handicaps where there need be none. For instance a Careers Adviser may assume that certain openings aren't worth mentioning to disabled clients (eg desktop publishing to someone like me with grotty-looking fingers), thus denying them financial, social and personal opportunities and benefits, with knock-on effects in other areas of life.
In The Experience of Handicap (Methuen) David Thomas says:
"To become disabled is to be given a new identity, to receive a passport indicating membership of a separate tribe. To be born handicapped is to have this identity assigned from the moment of discovery and diagnosis. Both involve a social learning process in which the nuances and meanings of the identity are assimilated. Those who become handicapped in adult life have to cope not only with the practical implications of impairment, but also with a host of behavioural-attitudinal adjustments."
Imposing language! But it's a crucial aspect of what chronic arthritis may mean. The practical implications of arthritis mean that in some ways I'm like a wooden doll, with functional problems of reaching, bending, gripping, moving, walking, but the crucial difference between me and a wooden doll is that I'm a living doll, who experiences pain and aches, fatigue and stiffness, frustration and anger and depression, not only because of the arthritis itself, but also because of other people's misunderstandings, and reactions to it.
A wide-ranging but easy-to-read introduction to some of the issues surrounding disability is the Disabled Living Foundation (DLF)'s factsheet Disability Awareness. It focuses particularly on the ways in which disability in society today continues to be a barrier to achievement and equality.
Susan Lonsdale's Women and Disability (Macmillan, 1990) examines the effect of physical disability on women in a social and political context. Look too at the 'Finding out more' section at the end of this chapter.
There are many definitions of disability. First, a legal definition. The 1995 and 2005 Disability Discrimination Acts (DDA) defined disability as:
a physical or mental impairment which has a substantial long term effect on a person's ability to carry out day-to-day activities
'Substantial' means 'more than minor or trivial'. 'Long-term' usually means effects that have lasted at least 12 months or are likely to last at least 12 months, and includes conditions likely to recur such as asthma or epilepsy. For more about rights under the Acts, visit Disability Rights Commission (DRC) or use the DRC helpline 0845 762 2633, textphone 0845 762 2644.
The DRC (Equality Commission in Northern Ireland) works to eliminate disability discrimination and promote equal opportunities, provides advice and information, prepares codes of practice, investigates claims of discrimination, works to ensure compliance with the law, and advises the Government on desired legislative changes.
Having a mix of good and bad days with rheumatoid arthritis, or with another form of chronic inflammatory arthritis can sometimes make it really difficult to prove that it has a 'substantial' or 'long-term' effect on what you can do. If you're trying to prove you are disabled under the terms of the Disability Discrimination Act try doing a 'search' on the DRC website for mentions there of your condition. This could take you to something like the Guidance on matters to be taken into account in determining questions relating to the definition of disability (Carol Foster-Middleton), where there are several helpful guidelines on rheumatoid arthritis. For instance:
A woman has had rheumatoid arthritis for the last three years and has difficulty carrying out day-to-day activities such as walking, undertaking household tasks, and getting washed and dressed. The effects are particularly bad during autumn and winter months when the weather is cold and damp. Symptoms are mild during the summer months. The effect on ability to carry out normal day-to-day activities fluctuates according to the weather conditions, but because the effect of the impairment is likely to recur, this person meets the definition of disability requirement on the meaning of ‘long-term’. B10 (Sch1, Para 2(2))
A person with rheumatoid arthritis may experience substantial adverse effects for a few weeks after the first occurrence and then have a period of remission… If the substantial adverse effects are likely to recur, they are to be treated as if they were continuing. If the effects are likely to recur beyond 12 months after the first occurrence, they are to be treated as long-term. C5
However, bear in mind that different services and benefits have their own eligibility criteria, not necessarily the same as those of the DDA. If you're applying for something like the Disability Living Allowance or the Blue Badge parking scheme, etc, it's a good idea to get advice from people experienced in explaining the problems, for instance advice from patient support groups like NRAS, NAAS and Arthritis Care, DIAL, the Citizens' Advice Bureau and others. The Disability Rights Handbook (see below) and other Disability Alliance guides have many helpful tips too. Generally speaking you'll need to concentrate on what you can't do, or find difficult, rather than what you can do. If there's quite a difference between good days and bad days, you may need to show what's normal for you over a period of time, perhaps by keeping an accurate diary.
Two other widely used definitions are the 'medical model of disability' and the 'social model of disability'. The social model is generally preferred by most disability campaigners, as this emphasises the restrictions created by society that can prevent disabled people from having an equal opportunity to take part fully in all aspects of life.
The DLF 2006 factsheet on Disability Awareness explains the social model:
"the lives of disabled people are affected by the barriers that society imposes. Having a disability certainly implies that there is some functional limitation that has been caused by an illness, accident or medical condition … Day-to-day activities may be more difficult for a disabled person because of pain, difficulty in moving or communicating, or because of a learning disability, but an accepting and accommodating society would significantly reduce the effects of disability. If the social and environmental barriers were eliminated, disabled people would have a more realistic opportunity of living equally alongside non-disabled people."
Better access and better service are good for business too! — In 2005 the Department for Work and Pensions (DWP) published figures estimating that Britain's 10 million disabled adults had increased their spending power from £50 billion to £80 billion per year. So…
The social model seeks changes in the environment, in attitudes, in access to information, and in traditional but unhelpfully inflexible social structures. Though someone with RA may not be noticeably disabled by their condition, they may often be restricted by factors outside their control, for instance rigid working hours from 9 to 5 may prevent someone holding down a job, whereas flexitime might allow them to work at times when the RA is at its most manageable. Many handicaps are caused by other people's attitudes and thoughtlessness, by non-disabled people parking in designated areas, by unthinking architects and planners, by inflexible rules and regulations. I may have an impairment, but so often it's only society's ignorance and unthinking inflexibility that disables me.
The medical model was based on definitions produced by the World Health Organisation (WHO) in the 1980s, the International Classification of Impairments, Disabilities and Handicaps (ICIDH). Campaigners for social change rejected the model because it linked disability with ill-health, and implied that solving problems arising from disability is the responsibility of the medical profession. For someone with a static disability and no medical condition, the social model may be sufficient, but people like us, with something like chronic inflammatory arthritis or multiple sclerosis say, surely also need to take into account medical aspects.
To paraphrase the 1980 WHO medical model definitions:
The 1980s medical model has since been extensively changed, developing into the International Classification of Functioning, Disability, and Health (ICF), an attempt to integrate the two models, using a 'bio-psycho-social' approach, one that "synthesizes what is true in the medical and social models, without making the mistake each makes in reducing the whole complex notion of disability to one of its aspects." (Towards a Common Language for Functioning, Disability and Health, WHO, Geneva, 2002)
The ICF model aims to provide an international standard language and framework for describing 'functioning, disability and health', but with the stress on health and functioning rather than on disability. The ICF model defines a person's functioning and disability as an interaction between health conditions and contextual factors, both personal and environmental factors:
The ICF is a companion to the International Statistical Classification of Diseases and Related Health Problems (ICD-10). Both represent progress, though do seem to be tools for planners and statisticians and researchers rather than easily usable tools for someone like me, the individual experiencing chronic inflammatory arthritis.
In England and Wales each local authority social services department keeps a register of people needing its help, though you don't have to register to qualify for an assessment or for services. Registration can be an advantage because you may then get help and information about special provisions more easily. The Register is an administrative tool which helps the local authority plan its budgeting and facilities for disabled people, so your registration benefits other disabled people too. Some authorities give you a registration card, others don't.
Government sources
Lobbying, campaigning, and other disability information
Disability Alliance
campaigns to 'break the link between poverty and disability'. Aims to promote a wider understanding of the needs and views of people with disabilities, especially their living standards. Well-known for its excellent annually revised Disability Rights Handbook, guidance through the vast maze of disability and health rules and regulations, and who does what. Full of helpful tips, for instance not just how to apply for Mobility Allowance or Disabled Living Allowance, but how best to improve your chances of getting them, and what to do if you don't succeed first time.
Its website links sections are particularly helpful guides as to where else to find information, for instance about the often confusing mass of government bodies. The FAQs (frequently asked questions) section covers benefits, community care, education, law, tax credits, transport, work.
Disability etiquette
(or 'everything you or someone else always wanted to know about meeting and working with disabled people but were afraid to ask')
"It is important to avoid a tendency to base an assessment of a person's capabilities on the assumption that they will inevitably be unable to work at some point in the future. Many conditions can be effectively controlled with treatment and medication, and can be satisfactorily managed over the years through the use of flexible work practices."
Research into social aspects