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

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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!

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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.

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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

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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?

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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.

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.

What is the Purple Pound?

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The power of the purple pound explained

At SPECTRUM we have talked about the spending power of Disabled People for a very long time.

The point being that there are a lot of Disabled People in the UK, they spend money – and no business, big or small (profit making or not-for-profit), can afford to ignore THAT many people, and THAT much ££££££.

As long ago as maybe 2010, Disabled People and others started to try to compare the spending power (and therefore influence) to other groups of people. For Instance, the spending power of Older People is usually referred to as the Grey Pound, or Silver Pound.

In the last few years the spending power of Disabled People has become known as the Purple Pound

purple-pound-sign (1)In the UK, it is thought that some 7 million Disabled People people are of working age, and overall there are 12.9 million Disabled People in total in the UK. This all adds up to an awful lot of spending power!

The “purple pound” is reckoned to be worth around £249bn to the UK economy.

Do disabled people have much spending power?

The UK’s Disabled People are said to have disposable income collectively worth nearly £250bn. Campaign groups regularly cite this figure and find it useful to remind businesses and politicians that Disabled People are a sizeable economic, and political force and should not be forgotten.

 

Disability consultant Mary-Anne Rankin says that businesses should think inclusively from the very beginning of any product or service they’re starting. She says:

“You’ve got to think about the widest possible usage of your services and explore innovative ways of enabling everybody to benefit from them. Because after all if your customers can benefit you’re going to make more money.”

 

As with why it is the colour purple (see below), similarly many people scratch their heads as to how the £BN figure was derived. All seem to agree it came from the DWP in 2004, but even they say the maths has been lost in the 10 years since it was first suggested. DWP says it was created using raw data from the updated Disability Discrimination Act in that year, alongside data from the Family Resources Survey of 2002-2003.

Whatever the variously quoted £BN’s, the fact is that we are talking a huge amount of money.

How does the Purple Pound compare to other groups?

  • Black and ethnic minority spending power, £300bn – 12% of the population of the UK, according to the Institute of Practitioners in Advertising, IPA, 2012.
  • Consumer power of the gay community, £70bn to £81bn – thought to be 6% of the UK, according to OutNow Consulting, 2007.
  • Overall UK disposable income of its 25 million households plus non-profit sector, 1.078 trillion pounds, according to the Office for National Statistics, ONS, 2012.

If you would like to read more – including why it is called the Purple Pound, follow the following links:

 

So – there you are – The Purple Pound

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What is a User-Led Organisation?

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SPECTRUM’s Guidance concerning: what are the unique characteristics of a ULO?

SPECTRUM Centre for Independent Living is an organisation run and controlled by Disabled People. We formed in 1984 as one of the first organisation in the UK that were run and controlled and managed by Disabled People.

We are therefore a User Led Organisation (ULO) and have been since our formation, and indeed, before the term ‘ULO’ was even coined.

With this history and experience, we have built up a range of resources and expertise to guide organisation that wish to be a ULO, and for commissioners who want to encourage the development of more ULO’s. We are able to provide training and consultancy services on request.

This information leaflet has been developed to help interested parties to understand what the key issues are in creating an effective and engaging ULO.

A few years ago, the Department of Health developed a ‘Design Criteria’ of 21 criteria for ULO’s to aspire to. Whilst SPECTRUM broadly supports these, we recognise they are complex and can be off-putting to many. However, we also know that being an effective ULO is a lot more than just having a majority of the organisation’s user-base on the Management Committee or governing bodies.

SPECTRUM has worked with many ULO’s, organisations wishing become a ULO and with commissioners who want to help develop a ULO. As a result of this work we have developed this guidance which helps new and evolving ULO’s to understand what the essential and desirable characteristics of a ULO are.

What is essential for a ULO? and what is just desirable for a ULO?

Understanding what a ULO is:

The starting point for understanding what a ULO is, is the definition developed from the Department of Health’s User-Led Organisation project, which defined a ULO as:

an organisation that covers all local Disabled People, Carers and other people who use support either directly or via establishing links with other local organisations and networks”

It is recognised and accepted that not all new and emerging groups would meet all of the design criteria at the early stages of their development, although they would normally be expected to be working towards meeting them over time. The Department of Health policy also acknowledges that these criteria may be met in a variety of ways according to local demand, resources and circumstances.

It is also important to note that it is not strictly necessary for a ULO to describe itself as such in order to meet the criteria. What a group does, and how it is run, are more important than what they call themselves.

SPECTRUM has observed that the design criteria were not necessarily a good fit for all types of groups (especially non-disability groups). To fix that, we have adapted the criteria in consultation with other ULO’s so that they make more sense in the specific context of ULO development.

These revised criteria are detailed below, providing clarity and comment about what is an essential characteristic and what is desirable or a longer term aim:

 

 

 

Other Methods to Follow what SPECTRUM Thinks & Does

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SPECTRUM uses a variety of Social Media platforms to communicate with, including:

FaceBook: https://www.facebook.com/SPECTRUM.CIL/

Twitter: https://twitter.com/SPECTRUMCIL

Linkedin: https://www.linkedin.com/in/spectrum-cil-42965ba5/

YouTube: https://www.youtube.com/user/southamptoncil

Why not try out all these different flavours of SPECTRUM!

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