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Is it appropriate or desirable to campaign on dementia as a disability?

I’m going to consider now whether it is appropriate or desirable to campaign on disability from a background of domestic law as a resident in England. Comparable human rights laws of course exist in jurisdictions.

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. The term ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed, and ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection.

There have been various definitions of dementia, but a conventional description of dementia is a condition with an underlying neurodegenerative basis affecting the brain causing a progressive decline in brain function, depending on the parts of the brain affected. The process is usually described as quite focal initially, say affecting aspects of language, short term learning and memory or higher order visual perception, but then affecting more global functions. That is a biological definition, but other definitions might emphasise aspects of personhood or human rights.

Let me lay my cards on the table. I live with chronic disability, long term conditions, in that I live with double vision all the time, following my meningitis in 2007. I also have a chronic ataxic gait following the same neurological insult. However, following my meningitis, I was able to complete both my Bachelor and Master of Law, my MBA and my pre-solicitor (regulated) legal training.

It’s worth considering in particular the terms, used in connection with consequences of a disability.

The words “impairment,” “disability,” and “handicap,” are often used interchangeably, but have very different meanings, however. The differences in meaning are important for understanding the effects of neurological injury on function.

The most commonly cited definitions are those provided by the World Health Organization (1980) in The International Classification of Impairments, Disabilities, and Handicaps:

Impairment is any loss or abnormality of psychological, physiological or anatomical structure or function.

Disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap is a disadvantage for a given individual that limits or prevents the fulfillment of a role that is normal

As traditionally used, impairment refers to a problem with a structure or organ of the body; disability is a functional limitation with regard to a particular activity; and handicap refers to a disadvantage in filling a role in life relative to a peer group.

As a disabled person, to get maximal state benefits, you have to present with maximal handicap. In other words, you living a full life with your own scooter or handrail at home might mean you get less financial support every week. However, an assets based or strengths based approach views you in terms of what you can do, rather than what you can’t do.

There can be nothing more demoralising than you seeing your Doctor only to be informed what you cannot do compared to last year, or how your tests, for example neuroimaging or psychometry, have declined. It might be more fruitful for you to know that you still have the cognitive ability to drive a car, which might mean that you are able to lead a more independent life.

A problem with the disability prism is that it skews your thinking towards handicap and impairment, and this is of course no bad thing in that the Equality Act (2010) makes clear that for physical disability reasonable adjustments should be made by a body conducting a public function for you to do your work. It’s worth noting that the statutory drafting of this applies to physical disability, though the corollary would be for you to be given a ‘cognitive ramp’ at work (e.g. memory aid) cf how a wheelchair user would use a wheelchair ramp at work.

People’s attitudes to physical disability vary a lot. I was once in a wheelchair when learning how to walk (and talk) again after my meningitis. I remember vividly the experience of having to hail a cab in Central London with my late father, and how cabs ‘available to hire’ would shamelessly drive on.

Some people find using a wheelchair or hearing aid a sign of empowerment. Some find them stigmatising or embarrassing. Some people even prefer not to think of themselves as ‘disabled’ for similar reasons.

Some people have visible invisibilities; some have ‘invisible’ disabilities. Even I have found myself catching myself thinking ‘he looks perfectly ‘normal’ to me’ for someone leaving a disabled toilet when he might, say, be using intermittent self catheterisation as a person living with multiple sclerosis.

People also have profoundly individual reactions to impairment and handicap, and therefore disability. For example, rheumatoid arthritis affecting fine movements in your fingers at first might personally affect you a lot more if you’re a virtuoso violin player say compared to a plumber.

Framing the conversation in disability therefore tells you what ‘rights’ you might be entitled to on account of your disability at a legal level. Irrespective of whether or not you have legal rights on account of being disabled, we all have universal rights on account of being human which are inalienable i.e. human rights.

But framing the conversation in disability takes you away from a neurodiversity conversation. That is, between us as a population, we all have different levels of cognitive abilities to offer – i.e. we can’t all be good at maths or languages. If you’re having trouble with higher order visual processing, HR might advise you well to seek a job where this is not such a prominent requirement.

It might be useful to campaign on dementia as a disability, in that this might give you a seat at a table in plush international conferences, and might enhance the status of Big Charity. But above all there is a moral imperative to ensure that what you’re campaigning on is of direct relevance to a person down the high street, proverbially. In other words, your nan with dementia in a care home being treated to abuse might be better off being protected under the Care Quality Commission and local legislation, rather than the United Nations Convention for Rights for People with Disabilities, an instrument which whilst adopting a human rights based approach does not actually specify dementia explicitly.

On the other hand, being involved in the disability community might give you further opportunity to attend meetings where you can shape policy for inclusion at a local level. This is of course no bad thing with ‘dementia friendly communities’ – dementia rarely travels alone, so any physical restriction for a person living with dementia might be a further reason why a person does not utilise community services.

Framing dementia as a disability has another ‘bonus’ in that it gets people away from a purely biomedical model of disability, which as we know has had limited success in cures or symptomatic treatments. Hope is much valued as a currency for people living with dementia or disability, howeverso defined, and community based rehabilitation, not just in physiotherapy or OT, but also in social inclusion, is a desirable entitlement in global health policy which I feel should tailored at a local level (so called “glocalisation“).

You are probably inclined to think at this point of the discussion “meh” – and with good reason. Much of the discussion pivots on what the local definitions are of dementia and disability to you, and how it impacts on you and yours. And not everything which is a ‘right’ is enshrined in law; and your right to do something might impact in complement in relation to somebody else’s right. So ‘it’s complicated’, but in my opinion worth thinking about.

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