Do you think Disability Barriers are too expensive to remove? Watch this short video

Susan Daniels

We have written extensively over the last few articles about why SPECTRUM exists, what our guiding philosophies are and what we believe are the essential ingredients to an inclusive society and workplaces.

Many governments, organisations and people however still view the moral arguments for including Disabled People as CUSTOMERS, as EMPLOYEES and as contributing members of SOCIETY as expensive.

Including Disabled People: “An expensive luxury we cannot afford?”

Many years ago (2002 in fact) SPECTRUM ran a high profile conference we called ‘Barriers to Business’ which highlighted the benefits and solutions to businesses in making sure they employed Disabled People and ensured their goods and services were accessible and friendly to Disabled People.

One of the most powerful parts of that conference was the short video below. This video was actually from an earlier B&Q conference, and the Speaker was Susan Daniels who at the time worked for the Office of Disability in USA.

We encourage you to watch this video. It is just as powerful, and creative now as it was 15 years ago:

To watch this video go directly to this link:

https://www.facebook.com/SPECTRUM.CIL/videos/936924549782675/

Tell us what you think?

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Struggling to Understand the Social Model? This essay changed my understanding – and my life

Vic

By Ian Loynes, Chief Executive SPECTRUM CIL

  • Like many young(ish) Disabled People, I heard about the Social Model of Disability and had people telling me that it was society that disabled me. It wasn’t so much my impairments, but the way that society failed to accommodate my needs that DISABLED me.
  • Well… I couldn’t accept that back then. I just couldn’t see beyond my reality that it was my joints and eyes that limited me.
  • Then… I bumped into Vic Finkelstein and his essay: “To deny or not to deny disability”. It was a life defining moment for me and helped me understand just how powerful and empowering the Social Model was for me.

Vic Finkelstein was a disability activist, scholar and avid supporter of the anti-apartheid movement in South Africa. In 1975 he penned this famous essay that showed how disability could be overcome and disappear with changes in society.

For me personally, this essay helped me to understand how important the Social Model of Disability is, and how to relate it to my life. This essay helped me to understand how it is the barriers and attitudes of people that actually disables me – rather than my impairment.

This essay is the single most influential thing I have ever read; I hope you will read it too, and I sincerely hope that it helps you to understand and relate to the Social Model of Disability, as it did for me.

Vic died in 2011, aged 73. SPECTRUM is proud to republish his essay in the belief it will be as powerful in 2017 as it was back in 1975

TO DENY OR NOT TO DENY DISABILITY

BY VIC FINKELSTEIN

Disabled People have always struggled against the way they have been prevented from taking part in the normal activities of their communities. More recently, however, these struggles have taken a step forward. Disabled People have begun to organise for their emancipation and join the growing numbers of groups struggling against social discrimination. We are taking a deeper look at ourselves, at the way we are treated and at what is meant by disability. We have noticed that it has nearly always been others who have researched, written, analysed, examined our history, and proposed their knowing solutions for us. More and more Disabled People have had experience of ‘disability experts’ and increasingly we have come to recognise the humiliation this relationship may take for granted. Can it be that having others research on the lives of Disabled People rather than us expressing our own experience has something to do with the very nature of disability? What, then is disability?

For many of us, the single factor that unites us together in our struggles is that it is our society that discriminates against us. Our society disables people with different physical impairments. The cause, then, of disability is the social relationships which take little or no account of people who have physical impairments. If this definition is correct, then it should be possible to prove that other social groups can become disabled, in an imaginary society which took no account of their physical status. In such an imaginary society it would be possible for physically impaired people to be able-bodied!

Let us see whether we can turn the world upside-down and show that disability is a socially caused problem. An upside-down world where the ‘able’ become ‘disabled’ and where we can show, too, that far from adjusting and accepting disability perhaps, just perhaps, it is healthier to deny and struggle to eliminate disability?

Let us suppose that those who believe in segregation could really have their way. We will imagine a thousand or more Disabled People, all wheelchair users, collected together and settled in their own village where they had full management and democratic rights. We will suppose able-bodied people do not often visit the village and that the wheelchair-users control all aspects of their lives. They make the goods that they sell in their shops with special aids, they work the machines that clean the streets, run their own educational colleges, banks, post offices, and transport system of the village, and so on. In fact, for the villager, being in a wheelchair is like everyone else in their world of people that he or she meets in daily life. They see wheelchair-users on television and hear them on the radio. Able-bodied people, however, are rarely seen and little understood.

In the course of the life of the village the wheelchair-users plan their lives according to their needs. They design their own buildings to suit their physical situation. One thing the wheelchair-users architects quickly discover in this village is that because everyone is always in wheelchairs there is no need to have ceilings at 9’6″ or door heights at 7’2″. Soon it becomes standard practice to build doors to a height of 5′ and ceiling or rooms to a height of 7’4″. Naturally the building codes set out in the regulations made these heights standard, now everyone is happy in the village; all the physical difficulties have been overcome and this little society has changed according to the physical characteristics of its members. At last the buildings and environment are truly in tune with their needs.

Let us say that when all the adjustments had been made and become fixed, in this wheelchair society, a few able-bodied had, through no fault of their own, to come to settle in this village. Naturally one of the first things they noticed was the heights of the doors and ceilings. They noticed this directly, by constantly knocking their heads on the door lintels.

Soon all the able-bodied members of the village were also marked by the dark bruises they carried on their foreheads. Of course, they went to see the village doctors, who were naturally, also wheelchair-users. Soon the wheelchair-user doctors, wheelchair-psychiatrists, wheelchair-user social workers etc., were involved in the problems of the able-bodied villagers.

The doctors produced learned reports about the aches and pains of the able-bodied in society. They saw how the bruises and painful backs from walking bent double so frequently were caused by their physical condition. The wheelchair-user doctors analysed the problems and wrote their definitions. They said these able-bodied people suffered a “loss or reduction of functional ability” which resulted in a handicap. This handicap caused a “disadvantage or restriction of activity” which made them disabled in this society.

Soon special aids were designed by the wheelchair-user doctors and associated professions for the able-bodied disabled members of the village. All the able-bodied were given special toughened helmets (provided free by the village) to wear at all times. Special braces were designed which gave support while keeping able-bodied wearer bent at a height similar to their fellow wheelchair-user villagers. Some doctors went so far as to suggest that there was no hope for these poor sufferers unless they too used wheelchairs, and one person even went so far as to suggest amputation to bring the able-bodied down to the right height! The able-bodied disabled caused many problems. When they sought jobs no-one would employ them.

Special experts had to be trained to understand these problems and new professions created for their care. When one able-bodied Disabled Person applied for a job as a television interviewer, a special medical examination had to be arranged to see if he was fit for this work. In the end it was decided that he was not suitable. It was felt, the wheelchair-user doctor pointed out in the case-file, that a television interviewer wearing a helmet all the time would not be acceptable. Since the cameras would only show the top of his head because the able-bodied were always bent double by the harness they had to wear he would not be suitable for interviewing. It is well known, the wheelchair-user doctor wrote, how difficult it is to communicate with the able-bodied because it is not easy to see their facial expressions and meet eye-to-eye while they are bent double.

In time special provision had to be made in the village to provide a means of obtaining money for these able-bodied disabled to live. Voluntary societies were created to collect charity and many shops and pubs had an upturned helmet placed on the counters for customers to leave their small change. Painted on the helmets were the words ‘Help the able-bodied disabled’. Sometimes a little plaster-cast model would stand in the corner of a shop, the figure bent double in their characteristic pose, with a slotted box on the figure’s back for small coins.

But one day, when the able-bodied were sitting together and discussing their problems they realised that they were never consulted by the wheelchair-users about this in the little society. In fact they realised that there may be solutions to their problems which had never occurred to the wheelchair-users simply because they never looked at these in the same way as those who had them. It occurred to these able-bodied Disabled People that perhaps the cause of their problems had a social solution – they suggested that the door and ceiling heights be changed ! They formed a union to fight segregation. Of course some of the wheelchair-users thought the able-bodied disabled were failing to accept and adjust to their disabilities and they had chips on their shoulders because they argued so strongly for social change and a change in attitudes by the wheelchair-users. The able-bodied disabled even argued that perhaps, just perhaps, their disabilities could be overcome and disappear with changes in society.

——-+———-

Notes:

This essay has been reproduced faithfully, however, since it was written, language (particularly around disability issues) has progressed. Please note the following:

· ‘Disabled Person/People’ is the preferred term to ‘person/people with disabilities’.

· ‘non-disabled’ is the preferred term to ‘able-bodied’.

See SPECTRUM’s Language of Disability article on our Blog or on LinkedIn for more information

SPECTRUM’s Philosophies: 2: What is The Social Model of Disability?

Disability-Training-pic-1

In this, the second of two main articles, SPECTRUM talks about its guiding philosophies – they dictate not just what we do, how we do it, but MOST IMPORTANTLY WHY WE DO IT

The two central philosophies are:

  • Independent Living
  • The Social Model of Disability

SPECTRUM was one of the organisations that helped define these philosophies. 30-40 years on, these terms are still widely misunderstood. In this the first of two articles, we’ll explain what we mean by these terms, and why they are so important to Disabled People around the world.

Our previous article discussed what Independent Living is and why it is so important to us. This article is about the Social Model of Disability.

More and more Disabled People are talking about the Social Model of Disability.

For many, understanding it has changed their lives. SPECTRUM sees it as its guiding philosophy, but it is still widely misunderstood. This article aims to explain the Social Model of Disability in non-academic terms.

The document serves as an introduction to these concepts. They are usually explored in more detail on Disability Equality training courses and Personal Development courses (available from SPECTRUM and many other organisations run and controlled by Disabled People). These courses enable Disabled People to relate the principles of the Social Model and Equality to their own life.

The Social Model of Disability has changed many people’s outlook on life – and it could change yours. If, after reading this, you would like to talk to people whose lives have been dramatically enhanced as a result of understanding and applying the Social Model, please contact SPECTRUM (info@spectrumcil.co.uk)

A different way of looking at ourselves

The Social Model of Disability enables Disabled People to look at themselves in a more positive way which increases self-esteem and independence.

Disabled People often feel a loss, for all the things they would like to do, but feel they cannot do; a loss of goals and dreams that seem unobtainable. Disabled People often feel they are a burden on family and friends, and a problem for doctors who cannot cure them.

This traditional view of disability is called “the Medical Model of Disability”, because it sees people as a medical problem. As a result, Disabled People are expected to see their impairment as their problem, something they will have to make the best of and accept that there are many things they simply cannot do (and cannot expect to be able to do).

It ignores how ‘bad’ a person’s impairment is. Instead it establishes that everyone should be considered equal and demonstrates that it is society that has negative attitudes about Disabled People, and it is society which erects ‘barriers’ that prevent Disabled People from participating and restricts their opportunities. Society is therefore said to ‘disable’ them.

How does the Social Model of Disability work?

The social model looks beyond a person’s impairment at all the relevant factors that affect their ability to be a full and equal participant in society.

What else is relevant?

The Social Model of Disability shows that it is barriers that disable people, not their impairments. For instance: heavy doors and inaccessible public transport are two examples of what makes travelling such a hassle – not the fact that someone has an impairment.

Every Disabled Person can make their own list of the barriers that limit their participation. When these barriers and other people’s negative attitudes are considered, it is easy to see how Disabled People’s opportunities are limited by a multitude of barriers.

The Social Model of Disability states that the solution is to remove these barriers, rather than the alternative Medical Model of Disability which relies for a solution on curing all people who have impairments. (Which in many cases is not possible, desirable or socially acceptable).

For a practical example, many people living with reduced eyesight are given a simple piece of equipment – a pair of glasses. Without them they would be excluded from full participation in society and would therefore be disabled by it.

Similarly, the social model solution to the fact that a wheelchair user is disabled because they cannot use public transport is simple – make public transport accessible to everyone, by way of ramps and high visibility guide rails!

table one

This Social Model of Disability approach to disability, which sees the problem as society’s barriers and attitudes, rather than the person’s impairment, allows Disabled People to lift the ‘blame’ from their shoulders and place it squarely onto society’s.

The Social Model of Disability empowers Disabled People to challenge society to remove the barriers that disable them.

table 2

It was Disabled People themselves who defined the Social Model of Disability. (See history section on the following page). They defined disability as:

 “the disadvantage or restriction caused by a society which takes little or no account of people who have impairments and excludes them from mainstream activity.”

The Social Model of Disability defines the words “Impairment” and “Disability” differently, as follows:

Impairment: Lacking part or all of a limb, or having a defective limb, organ or mechanism of the body.

Disability: The disadvantage of restriction or activity caused by a contemporary social organisation which takes little or no account of people who have impairments and thus excludes them from participation of in the mainstream of social activities. Disability is therefore a particular form of social oppression.

While physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disabling outcomes or barriers unless society fails to take account of and include people regardless of their individual differences.

As a result of understanding the Social Model of Disability, many Disabled People now understand that it is society’s reaction to their impairment that is disabling, not the impairment itself.

A fundamental aspect of the Social Model of Disability concerns equality. The struggle for equality is often compared to the struggles of other socially marginalised groups. Equal rights give empowerment and the “ability” to make decisions and the opportunity to live life to the fullest.

The Social Model of Disability focuses on changes required in society. EG:

  • Attitudes, for example a more positive attitude towards Disabled People, or not underestimating the potential quality of life of those with impairments,
  • Social support, for example help dealing with barriers; resources, aids or positive discrimination to overcome them, for example providing a buddy to explain work culture for an employee with autism,
  • Information, for example using suitable formats (e.g. Braille) or plain English or coverage (e.g. explaining issues others may take for granted),
  • Physical structures, for example buildings with sloped access and lifts, or contrasting colour schemes to aid visually impaired people,
  • Flexible work hours for people with sleep disorders or, for example, for people who experience anxiety/panic attacks in rush hour traffic.

wheelchair stairs

A Brief history of the Social Model of Disability

In 1975, the UK organisation Union of the Physically Impaired Against Segregation (UPIAS) claimed: “In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”

In 1983, the disabled academic Mike Oliver coined the phrase “Social Model of Disability”. It was subsequently extended to include those with learning difficulties, people with emotional, mental health or behavioural difficulties, and others.

Further reading: https://en.wikipedia.org/wiki/Social_model_of_disability

Socio-Political+Models+of+Disability

SPECTRUM’s Philosophies: 1: What is Independent Living?

man in wheel chair doing laundry

In the first of two main articles, SPECTRUM talks about its guiding philosophies – they dictate not just what we do, how we do it, but MOST IMPORTANTLY WHY WE DO IT

The two central philosophies are:

  • Independent Living
  • The Social Model of Disability

SPECTRUM was one of the organisations that helped define these philosophies. 30-40 years on, these terms are still widely misunderstood. In this the first of two articles, we’ll explain what we mean by these terms, and why they are so important to Disabled People around the world.

Before we talk about our perspective on Independent Living – it is important to say the subject is open and we would love to hear your views – particularly on how we can develop an understanding of Independent Living for Older People and for people who do not consider themselves to be Disabled People. What is for the state to take responsibility for? and what should we be responsible for ourselves? What about the right to a family life and relationships which is highlighted in the UN Convention on the Rights of ‘Disabled People’ but entirely missing from the 12 Basic Rights to Independent Living? WE WANT TO STIMULATE DISCUSSION ON THESE IMPORTANT ISSUES if we are to keep Independent Living alive in the 21st Century.

So: Tell us what you think!

What is Independent Living, and why is a proper understanding important to Disabled People?

Many people believe that independence is about doing everything for yourself, and that, because Disabled People often need assistance in their everyday life, they cannot be independent.

Disabled People challenge this assumption. We say that independence is not about doing everything for yourself. No-one lives in isolation from the rest of humanity, we all depend on each other – that is why we all live together as a society. But, to take part in society on an equal basis we all need Choice and Control over how we live, who we live with, and what we do with our lives

Yet Choice and Control – which are so important to being a fully included member of society – are often denied to many Disabled People. This can never be right. Disabled People refuse to accept that non-disabled People have the right to deny them Choice and Control over their own lives.

It is this fundamental understanding that gave birth to the Independent Living Movement.

What is Independent Living?

Independent Living simply means Disabled People having the same choice, control and freedom as anyone else – at home, at work, and as members of the community. While this does not mean ‘doing everything for themselves’, it does mean that any practical assistance Disabled People need should be based on their own choices and aspirations.

Lots of people have come up with different definitions of Independent Living. They all focus on a few key ideas: choice, control, freedom, equality and inclusion.

  •  Philip Mason, for example, highlights the aim of equalising the opportunities available to Disabled People:

Our dream was that Disabled People would be enabled to fulfil their roles in terms of taking the opportunities society offers and meeting the responsibilities society requires.”

  •  John Evans expresses it as a freedom:

“The essence of Independent Living is the freedom to make decisions about your own life and to participate fully in your community.”

  • Adolf Ratzka, of the Independent Living Institute defines it as having the same choices as everyone else:

“Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves.”

At SPECTRUM we simply say:

 

How do we achieve Independent Living?

Having the finance, and support to enable Disabled People to employ their own personal assistants to assist them with their everyday lives is one very good way of facilitating independence. By employing our own staff, Disabled People can control how the assistance they need is provided, allowing them to lead the lifestyle of their choice.

This is not a choice that is always available however. Disabled people in the UK currently have only very limited rights to support in terms of concrete outcomes to support Independent Living. Such minimum rights as do exist do not guarantee very much more than a right to basic maintenance or survival.

Existing rights are also very limited in scope. Even the right to an assessment of needs is not underpinned by any guarantees about either the level or type of assessment or – most importantly – the minimum levels of support people can expect to receive.

SPECTRUM believes all Disabled People have the right to live independently. Disabled People have identified 12 Basic Rights, which are essential to make Independent Living a reality:

1. Full ACCESS to our environment

2. A fully accessible TRANSPORT system

3. Appropriate TECHNICAL AIDS/EQUIPMENT

4. Accessible / adapted HOUSING

5. PERSONAL ASSISTANCE to enable an independent lifestyle

6. Inclusive EDUCATION and TRAINING

7. An adequate INCOME

8. Equal opportunities for EMPLOYMENT

9. Appropriate and accessible INFORMATION

10. ADVOCACY (towards self advocacy)

11. Empowering COUNSELLING services

12. Appropriate and accessible HEALTH CARE provision

 

So, it is not just a question of ensuring equality of access to social care services, but of looking at the role of social care and other resources in enabling Disabled People’s full participation in society.

Although many assume this already exists, Disabled People are aware it does not. Disabled people are denied independence on a daily basis, through limited choice and opportunity to participate. Whatever indicator you look at, whether it is educational qualifications, employment statistics, access to suitable housing or health outcomes, Disabled People routinely fare very badly.

While there are still many barriers to overcome, the aim for Independent Living remains a very simple one – Disabled People living on the basis of equality with non-disabled people. Or, as the late Martin Naughton of Dublin CIL put it:

To boldly go – where everyone else has gone before!

Sticks and stones: The language of Disability – what do you think?

abcsmall

In this article we take a look at the language we at SPECTRUM use to talk about Disability and why.

 It is not about ‘Political Correctness Gone Mad’ – it is far more important than that.

As the old saying goes, ‘sticks and stones may break my bones but words will never harm me’. While that might be good advice to help children to deal with playground bullies, it might not be quite so much help when dealing with the kind of negative, stereotypical and sometimes oppressive language that Disabled People often have to face. Society’s misconceptions about Disabled People are constantly being reinforced by disabling terms like ‘cripple’ and ‘handicapped’ – even in the 21st Century. Their continued use contributes significantly to the negative self image of Disabled People and at the same time perpetuates discriminatory attitudes and practices among the general public.

So, words can in fact do a lot of harm and – if you happen to be on the receiving end – can often be just as damaging as the proverbial ‘sticks and stones’.

Sometimes, well-meaning but seriously misguided terms intended to counter this kind of overtly discriminatory language can do just as much harm, albeit in more subtle ways. For example, euphemistic terms such as ‘physically challenged’ and ‘differently abled’ have crept into our everyday language as a result of people failing to understand the difference between Medical and Social Models of Disability. While, in many ways, they are just plain daft – and often provoke a knowing shake of the head – such terms are still discriminatory because they imply that the ‘problem’ of Disability is still, essentially, located with people with impairments themselves. This neatly sidesteps the real reasons for the barriers we face. Yes, we are sometimes challenged physically – 10 fights of steps for a wheelchair user does indeed cause a certain degree of difficulty, even if they had three Weetabix for breakfast!! But take away the steps or put in a ramp, and the ‘challenge’ magically disappears.

Language is never neutral

All language has meaning that goes beyond being purely descriptive. It shapes how we see each other, the value we place on different identities, and how we actually behave. So, any discussion about the language we use to talk about Disability cannot be undertaken from a politically neutral standpoint.

At SPECTRUM we have always been very clear that our position is based on the Social Model of Disability, which makes a clear distinction between impairment and disability:

Impairment vs Disability

 IMPAIRMENT IS ……

  • The functional limitation within an individual caused by a physical, mental, intellectual or sensory condition which differs from accepted ‘norms’

SOCIAL MODEL DEFINITION OF DISABILITY

  • The disadvantage or restriction of activity caused by society which takes little or no account of people who have impairments, and thus excludes them from mainstream activity. Therefore, disability, like sexism and racism, is discrimination and social oppression

DISABLED PEOPLE …..

Are therefore those people with impairments who are disabled by society

These distinctions make a huge difference to the language we use. Stereotypical language based on a Medical Model of Disability reinforces a negative view of Disabled People while, at the same time, disguises the social and economic basis of the barriers we face:

“Over the years a large amount of terminology concerning disability has evolved which denies the social construction of disability and is now considered offensive by many people in the British Disabled People’s civil rights movement. These terms have originated and been perpetuated by the likes of the medical, religious and welfare professions. Many are patriarchal in nature, evoking the notion that Disabled People need looking after. Others are based on false premises that have since been disproved.

The language that people use reflects what they think and can influence how they deal with situations. If they behave as if the problem is with the individual, they will take a different approach than if they regard the problem as being with the attitudes, systems and practices that create disabling barriers.”

(‘The Language of Disability’, by Laurence Clark and Stephen Marsh, 2002)

So, for example, subjective terms like ‘afflicted’, ‘sufferer’, ‘housebound’ etc reinforce a negative view of Disabled People as powerless ‘victims’ or objects of pity. Similarly, phrases such as ‘the disabled’, ‘the blind’, and ‘the deaf’ dehumanise Disabled People to the point that they become invisible as real individuals. In some cases language can make us disappear altogether. How often, for example, have you heard wheelchair users referred to as “a wheelchair”. Images of autonomous robot wheelchairs getting on and off airplanes might be appropriate in a science fiction film, but as a way of describing real people it is extremely offensive!!

‘Political correctness’ gone mad?

A lot is said about ‘Political Correctness’ which has become a phrase of ridicule for many people. However this stance trivialises an important principle – that the language we use to describe people, should be language that those it describes are comfortable with, avoiding terms that are offensive or inaccurate.

It’s also important to keep in mind that offensive language is offensive for a reason; many of the various words and phrases that have been used to describe Disability have a long history and almost always carry negative connotations. Interestingly, many also deliberately seek to define people with impairments as being ‘outsiders’ and not fully part of society. So, the term ‘idiot’, for example, derives from the Greek ‘idiotus’ meaning “a person who does not take part in public life.” and ‘cripple’ has been traced back to the Medieval word ‘kripple’, which meant “to be without power” – which is quite insightful if you think about it!!

Dismissing concerns about such language as ‘political correctness gone mad’ is, at best, misguided and naive. The question is, in any case, a false one. The main issue is not whether or not this or that tem is ‘correct’ – which can quickly become a quite tedious debate – but whether or not the meaning it conveys is one that reinforces a positive or negative perception of Disabled People. All language describing particular groups in society is political – it cannot be anything but. So, the important questions are about whose language should be respected and which political perspectives hold sway.

Disabled People and the disabling society

While negative language describing people with impairments goes back hundreds of years, the emergence of the Disability Movement and the Social Model of Disability in the 1970s and 80s saw language itself become a fundamental political tool in our struggle for civil rights and inclusion.

According to the Social Model of Disability, people have impairments, they do not have disabilities. Disability is caused by society’s inability or unwillingness to meet the needs of people with impairments. As a result, the term ‘Disabled People’ was redefined to mean people with impairments who are disabled by socially constructed barriers and the word ‘Disabled’ before ‘People’ or ‘Person’ came to signify identification with a collective identity. Writing Disabled People with a capital ‘D’ and ‘P’ also became commonplace as a way of emphasise the term’s political significance.

More recently some groups have chosen to adopt ‘people-first’ or ‘person-first’ language as a way of describing disability that involves putting the word ‘person’ or ‘people’ before the word ‘disability’ – as in ‘people with disabilities’. The thinking behind this is to promote the idea that disability is just a label and not the defining characteristic of the individual.

But that is not a view we share because, just as with euphemistic terms like ‘physically challenged’, it mixes up the Medical and Social Models of Disability and confuses disability with impairment.. Most importantly, it implies that the effects of disability lie with the individual, rather than society. This effectively denies the political and collective meaning of the term ‘Disabled People’.

Reclaiming our language

The term ‘Disabled People’ has been adopted to define a collective identity for the Disability Movement in the UK. Particular groups of Disabled People have also sought to reclaim different words and phrases as a way of asserting their own political and/or cultural identity. People with physical impairments have, for example, sometimes adopted terms like “crips”, while some Mental Health System Users and Survivors have adopted the term “mads”. In these cases, language is being used to reclaim and subvert words that were previously seen as derogatory and to give them a positive meaning. They are also used to express solidarity and collective pride in a shared identity in the same way, for example, that some members of lesbian, gay, bisexual, and transgender (LGBT) communities have reclaimed the term “queer”.

However, such language is of course very context-dependent. While it may be okay for members of the group to use these ‘reclaimed’ terms, they usually still retain their original negative connotations in wider society. Once again, this underlines that the language of Disability can never be politically neutral and emphasises the importance of respecting the way that Disabled People choose to define their collective identity.

The wheels, they keep on turning

When discussing the language of Disability, it is important to keep in mind that language in general is constantly evolving, and, accordingly, the language of Disability is an also evolving, so this is an ongoing debate.

At SPECTRUM we believe it is vitally important to resist any attempts – whether deliberate or unintended – to neutralise the political meaning of the language we use to talk about Disability. We do not want to take on the role of ‘thought police’ or try to force people to only say what we want them to say. But, it is important to try to educate people about why language matters and to raise awareness of the ways that words influence actions and relationships. Language does not just describe our position in society, it actually helps to define it.

When Devices go Bad – or The Pump too Tough to Die – by Jennie Musson

We all use technology in our lives, to a greater or a lesser extent, from the ubiquitous mobile phones, to our Digi-boxes and coffee machines. Many of us also rely on technology to manage our impairments or medical conditions. This technology can be incredibly effective in assisting us to stay well and enabling us to have as normal a life as possible, but what happens when technology “goes bad”? Well, one of our staff members got to find out – and here is her experience….

When I think of technology “going bad”, I must admit that one of the first things that springs to mind is either the film, “I Robot”, or the (in)famous scene in “The Young Ones” where washing machines rebel when faced with Neil’s sweaty socks.

What brought me to write on this subject was my own encounter with some new technology to help me manage my type 1 diabetes. I have been an insulin pump user since 2007 and, like many people, have found the benefits of insulin pump therapy have revolutionized my care and improved my quality of life, compared to multiple daily insulin injections.

Having had my current insulin pump almost 6 years, it was decided by the good folk at Bournemouth Diabetes and Endocrine Centre (BDEC) that I was in need of an upgrade and would I like to trial a new insulin pump and sensor system for a couple of weeks. To say I bit their hands off would be a massive understatement, as in the wonderful wacky world of type 1 diabetes, hardly anyone ever gets offered the chance to try out a sensor system on the NHS, as they are prohibitively expensive. Sensors are meant to be used  in conjunction with an insulin pump, continually monitoring blood glucose and sending these results to the insulin pump. When blood glucose is about to fall too low, the insulin pump stops delivering and alarms, which is a brilliant feature for people (like me) worried about having very low blood glucose in their sleep and potentially going into a coma. This is a safety feature, supposed to give people peace of mind and better control with no dangerous lows. So far, so good.

I spent about four hours at the hospital, meeting the lovely smiley medical rep and discussing the system with the diabetes nurse and left, clutching two large carrier bags with my pump swag and with a nice shiny new sensor and new pump attached to me, feeling nervous but quite smug at the same time.

Things were going great, with the pump alarming and vibrating before the blood sugars hit rock bottom and I was very pleased that everything worked as it should.

It wasn’t until that night when the pump and sensor bit back. It started, innocuously enough, with the pump alarming and telling me insulin had been suspended, as blood glucose was too low, although I did not feel ill as I usually do when this happens. I checked my blood – not low at all. I thought this was a bit wierd, but cancelled the message and went to bed, blissfully unaware of the techno-hell that night would bring.

“Beeeeeep” “Brrrrrrr” “BEEEEEEEP!!” woke me up from deep slumber at 12.30am. Completely disorientated, I fished the pump out and jabbed at it while squinting short-sightedly at the display. “Insulin suspended, low blood glucose”, the thing helpfully informed me. Cursing, I did a blood test – nowhere near low. Muttering wrathfully, I cancelled the message and went back to sleep.

“BEEEEEP! BRRRRRR! BEEEEEP!” woke me again half an hour later with the same message. Again tested my blood as instructed by the electronic tyrant – with the same results – no lows. In fact, too high. Yet again, I cancelled the message and went back to sleep , convinced that Chairman Mao had nothing on this insulin pump.

And so it went on: “BRRRRRR! BEEEEEEP! BRRRRR!!” all night long.

Finally, when it had woken me up for what felt like the 18th time at 5am, I dragged it out, shouting “WHAT???” at the pump screen, as though it were a recalcitrant toddler. I briefly considered hurling it out of the window, but was forced to dismiss this idea as it was unfortunately attached to me and would have resulted in a couple of broken legs.

Two hours later, the accursed alarm started again, this time telling me to change the sensor. This was the final straw. Enough was enough. I marched downstairs, ripped out the sensor and disconnected the pump, reverting to my old (and wonderfully silent) one. Ah, relief! Even then, the thing would not die and kept beeping and vibrating in its box where I had carefully placed it. I wondered whether it would still be heard if I buried it under 2 feet of concrete, but reluctantly conceded that BDEC would want it back at some point in the future. At least with the monster stashed in its box, I could walk away and not have it follow me, wailing and vibrating, like a hyperactive child in a sweet shop.

I remain unsure as to whether the issues I had were mechanical or whether they were a result of my inexperience with the system, but I intend to try and follow the old maxim “At first, if you don’t succeed, try again” (at least when my eye bags have receded). After all, it’s a matter of pride – who likes to be beaten by a mere machine?

SPECTRUM’s Summer 2017 Newsletter is out

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The June edition of the SPECTRUM newsletter is out now! Packed full of interesting and informative articles, like “To Deny or Not Deny Disability” by Vic Finkelstein, news about our exciting new training and consultancy services, and why Disability Equality is good for business and more!

You can read the Newsletter by clicking on this link.