Blogging About Disability Part One: The Power of Words

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

The internet offers an unparalleled opportunity to reach vast numbers of users – potentially many thousands of people each day, and this is, perhaps, the main reason for the surge in popularity of blogs and blogging among businesses and other organizations.

Any subject that you can think of will probably have been written about by somebody, somewhere, in a blog.

Why do people write blogs?

Is it to raise awareness of the things that concern them?

Is it to influence the opinions of others?

Do they do it as a form of catharsis to, ‘get things off their chest’?

These are, perhaps, the most common reasons for blogging, especially for bloggers like us – the parents and relatives of disabled children (or children with disabilities: you’ll see why I’ve added this in part two).

But can blogging ever be anything more than a self-indulgent exercise?

I would argue that yes, it can.

Popular bloggers can wield great power as influencers, and have a tangible impact on the realms of business, politics and society.

For example: a Russian political blogger was named by The Wall Street Journal as ‘the man Vladimir Putin fears most’ (March 2012), after his nickname for the ruling United Russia Party, ‘the Party of Crooks and Thieves’ was adopted by anti-regime protestors.

It was also the influence of bloggers in the US that created the political crisis in 2002 which forced Senate Majority Leader, Trent Lott, to step down.

Blogs are much harder for the state to control than either print, or broadcast, media, and so authoritarian and totalitarian regimes will often either seek to suppress them, or to punish those who maintain them: in Myanmar a blogger was sentenced to twenty years in prison for posting a cartoon criticising the Head of State.

But can we, as humble ‘Special Needs’ parents (I probably should stop using that phrase: more about that in part 2 also), really do anything to change the world?

Again, I would argue that yes, we can.

For a start, we can be instrumental in raising genuine awareness among the general population – not only of rare conditions, or of the fact that some children experience profound impairments or difficulties without ever getting a formal diagnosis (Syndromes Without A Name or SWAN), but also of the more common, and commonly misunderstood, conditions/impairments.

I write about parenting a child with Down’s Syndrome, and have on occasion been asked: ‘Why bother? Everybody’s already aware of Down’s Syndrome.’

But, though most people can recognise the facial features consistent with Down’s Syndrome, and think they know what it is, it transpires that their mind is full of outdated stereotypes and misconceptions, and they have no real understanding of it at all.

They are surprised when they are made aware of the true nature of the challenges we face, and of how much our children can achieve when given the right support.

As bloggers we have the power to challenge stereotype and misunderstanding, to demystify and demythologise life with a disability, by writing about, and sharing, our reality.

There is another way in which I believe we parent bloggers can influence the world around us, and that is by demonstrating a careful and constructive use of language.

But surely a blogger should write freely, as they speak, in a voice that is authentically their own, without having to worry about the niceties of grammar? Well, yes and no.

Of course any blogger’s writing should reflect their own authentically individual viewpoint and experience, and the finer points of grammar aren’t really that important so long as a person is able to get their point across, but language, as in choice of words, is crucially important when writing about disability.

The terminology concerning disability is a contentious and surprisingly political issue.

Disability is often more of a civil rights matter than a medical one.

It is an issue of semantics, also – language both reflects and influences how people think, and how they react to situations, and to other individuals.

The traditional view of disability locates the ‘problem’ with the individual, and asserts that it is the disabled person’s medical condition that is the root cause of their exclusion from society.

This is the ‘Medical Model’ of disability.

It confuses disability with illness, and looks for medical solutions – potential cures or treatments, or the eradication of the ‘problem’ by other means, such as pre-natal screening, and termination of foetuses found to have certain congenital conditions – rather than societal change to make life better for those with impairments/disabilities.

Much of the terminology it uses is patriarchal in nature, implying that disabled people need to be looked after, and to have things done for them and to them: and in so doing it denies them empowerment.

The persistent use of such terminology perpetuates negative and inaccurate stereotypes.

This in turn leads to misinformed and inappropriate attitudes in society generally, to social exclusion, a clichéd and negative media image, inadequate legislation and social policies, and inaccessible buildings.

In a society so heavily influenced by the media, the press can have an enormous impact on society’s knowledge and attitudes, and on public policies regarding individuals with impairments.

Yet, despite more than forty years of disability civil rights activism, and the opposing calls for the use of Person-First language or the Identity-First language preferred by the civil rights movement, many journalists writing in the mainstream press continue to use the dehumanising, disenfranchising and paternalistic terminology of the Medical Model.

In January 2016, Sarah Knapton, Science Editor at The Telegraph, described Down’s Syndrome as a ‘debilitating condition’ in an article on pre-natal screening.

She faced a barrage of comment and complaint from members of the Down’s Syndrome community, particularly those active online, keen to point out that, far from being debilitated, those with the condition are able to participate fully in life, enjoying hobbies, participating in sports, achieving in education and, in some cases, able to hold down jobs, and form romantic relationships.

To date she has, I believe, refused to apologise for the term, or admit that it was inaccurate.

But a few days later, as a result of the comments received, the newspaper ran an article by another journalist offering a more positive perspective.

So, language both reflects AND influences how people think and how they react; and the patriarchal phraseology and out-dated, inaccurate descriptors that originate in the traditional ’medical’ view of disability contribute to a negative and invalidating stereotype.

Language, then, is one of the socially constructed barriers that constrains those people who have a physical, intellectual, or psychological impairment.

Therefore, one way in which we can begin to change society’s perception of disability is to change the language we use to talk, and write, about people with impairments.

As I hope the examples given above have shown, bloggers can be great influencers.

Their influence extends beyond the online world into the real world of politics, business and society, and in some instances has been instrumental in bringing about socio-political change.

It is not just their opinions and ideas that their readers or ‘users’ adopt, sometimes the actual words they use are taken up also.

Blogs and other internet sources are rapidly becoming the first choice for those seeking information and news, and in some sectors are overtaking the mainstream media, which is having to change to meet the challenge presented by the online world.

This is where online communication and activism, and blogging such as ours, comes into its own.

As a public platform that can be accessed by anyone, the internet offers a voice to the voiceless, and because of its unprecedented reach, both in terms of user numbers and geographical spread, it allows that voice to be widely heard.

As bloggers ourselves, then, WE have the tools in our hands to bring about change. Our tools are the words we use.

By employing more positively-nuanced language and terminology, that references disability in terms of society rather than the individual, and by rejecting and challenging phrases that dehumanise and devalue, then it is possible, that we may be able to effect change in the way society perceives people who have impairments, we may also cause the traditional press to re-evaluate their presentation of such issues also.

Potentially this could lead to the perpetuation of a positive image of disability and impairment, but as with all social change, if it happens it will be a protracted process.

And I suspect that it is more easily said, than done in practice.


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