Sunday, 20 March 2016

Now let’s have the debate

Finally disability benefits are high on the political agenda – so where next?

When the Daily Telegraph, just over a week ago, carried a front page article critiquing proposed cuts to Personal Independence Payment, something was afoot. It was, as we saw over the next few days, a sign that various political agendas were beginning to be played out. 

But after a tumultuous week in politics, for disabled people two things stand out. First, Government has back-tracked on the plan to restrict eligibility for PIP: this is an immediate win for the disability movement, which all campaigners should take a moment to celebrate. Tireless campaigning against a succession of unfair policies has finally brought a result (though we must keep a watchful eye on what next). 

Second, there is - at last - a high profile public debate on disability policy. Finally some public figures are saying – as we have said for years – that policy must be driven by a real commitment to what works in the lives of people living with health conditions or disability. This goes beyond the immediate debate on PIP: we want investment in participation, not short-term cuts that cause misery and are counter-productive, actually increasing spending long-term.

This may offer us an opportunity. Disability Rights UK alone had opportunities to speak in the mass media that are usually monumentally hard to obtain – because disability is generally just not seen as front page news. Last week we were interviewed or quoted on the main TV news on BBC, ITV, Channel 4, Channel 5; the Today Programme, PM Programme and Radio 5 Live; the Mirror, the Independent, the Times, the Telegraph, the Guardian – as well as many local radio and print media. And other campaigners and organisations were quoted too – including members of the Disability Benefits Consortium, who led on great analysis of the numbers behind the government’s proposals.

This story was not squeezed into a social affairs niche by the media – but given centre stage. And gradually interest spread further and further beyond the usual disability commentators: we had inquiries from people including Rory Bremner, it was covered on the Last Leg, comedians like Chris Addison were tweeting about it…..

We have a new Secretary of State for Work and Pensions, Stephen Crabb, and we urge him to start a direct discussion with disabled people, our organisations, and policy experts – to forge a policy direction that supports our independent living and our opportunities.

For this is how we need to frame the debate: in terms of independent living and opportunity. One downside of the high profile debate this week has been that some of it has focused on the need to ‘protect’ the ‘most vulnerable’. These are not the concepts we need. 

Firstly, because we want independent living and full participation in society – with support where needed to achieve that; we don’t want to be ‘protected’, viewed as ‘vulnerable’ and helpless, which merely compounds the sense that disabled people are pretty incompetent. And secondly, because the rhetoric about looking after the ‘most vulnerable’ usually means targeting resources only at a small number – which throws out of the window the concept of equality. 

If I am not the ‘most vulnerable’ but with some support (like PIP, or Access to Work, or Disabled Students’ Allowance) can achieve more equal life chances with others then I fundamentally deserve that support as a matter of equality. It enables people to get out and about, escape social isolation, perhaps get qualifications: to achieve independent living.

So we should reject the language of ‘vulnerability’ and talk instead about support for independent living and opportunity to use our talents to contribute to our communities.

And we are ready to talk with politicians of all parties on what WOULD support our independent living – bringing people living with a wide range of health conditions and impairments into a debate to set a better forward direction. A long-term plan for independent living and equality would be good for individuals, for families and for the whole of society. The time for serious discussion about how to achieve that is now. 

Liz Sayce

Friday, 11 March 2016

Object to coercion, support the right to work

I’m deeply concerned that trust between disabled people and the state in relation to employment has been eroded – to such an extent that offers of employment support get viewed through the filter of possible sanctions and benefit loss. 

For instance, we sometimes see protests against employment programmes run in GP surgeries and the like. Even where such programmes state they are voluntary and have a commitment to confidentiality of data, disabled people fear they could become mandatory at a later stage, that data could be shared with DWP, that taking part could impact on benefit eligibility (and more).

Since the regime of the (broken) Work Capability Assessment and sanctions came in, activities linked to the state (whether the NHS or any organisation contracted by government) seem to get tainted by the fear of compulsion – and fear of poverty. When benefits can be reduced just because you don’t comply with something meaningless or worse (like CV writing courses when you have a CV but no employer prepared to take you on with your sickness record) it’s not surprising people feel afraid.

On the other hand, if you ask disabled people what they want from services, support to get or keep a job is almost top of the list. The largest group of people on ESA are those with mental health problems (48% of incapacity-related claimants have a mental health problem as their main impairment[1]). 

A 2015 national survey of people with mental health problems found that only 25% got employment support; 47% said they didn’t get it but wanted it. Compare this to the figures for getting talking therapies/treatment - the exact opposite: 47% got talking therapies, and only 25% said they did not but wanted it. 

The survey - and studies of other groups of disabled people - show repeatedly that people are not getting the support they want with life issues and not getting the peer support they want: 43% in this survey didn’t get support with accommodation but wanted it, 48% didn’t get support from others facing similar challenges but wanted it. There was nowhere near this level of dissatisfaction on any of the treatment questions. And the dissatisfaction with lack of employment support has got worse since 2014.

Incidentally, as Rachel Perkins and Julie Repper have pointed out[2], this does rather beg the question of why mental health organisations are campaigning so hard for more treatments, beds and other traditional mental health services when what people want most is support with housing, employment and benefits.

The survey also shows that there is a desperate need to meet the demand for employment support. People – simply – want jobs and careers. They generally don’t want to lose their jobs if they develop health conditions and do want to get jobs when out of work. 

There are several learning points from this. 

First we should campaign vigorously against sanctions and the culture of coercion and fear that they engender. If they frighten people off even voluntary employment support something is going very wrong – and the government’s own plan to halve the disability employment gap is undermined. 

Second, we need collectively to develop alternatives to coercive employment support. Disability Rights UK is working with DPOs and with the Work Foundation to identify good practice – based on peer support; and with DPOs we have proposals that would make careers massively more flexible, with incentives and support for employers to do so and opportunities for large numbers of disabled people to get skills and apprenticeships that equip them for careers, not just jobs. This could include people being able to work when well – with back-up from the state in the form of better support for both disabled people and employers. And let’s not forget this is against a backdrop of the dismal track record of the Work Programme and Work Choice. We need alternatives that work for the people they are there to serve.

20 years ago as disabled people we campaigned for the right to work, the right not to be underestimated or written off. Since the sanctions regime kicked in, campaigns have grown for the right not to work – to have the realities of impairment, pain, fatigue and confusion recognised. ‘Impairment impairs’ as Pat’s petition puts it[3]. In this climate, any emphasis on employment can be treated with suspicion – seen not as meeting what disabled people want, but as promoting the agenda of the state to compel people to do inappropriate work or work-related activity.

We need to campaign against the poison of coercion and sanctions; and to argue vehemently for an expansion of the voluntary employment support that people want. 

For people to seek careers, we need hope. The very last thing we need are cultures of fear. 

So let’s campaign for employment support – and against coercion. It isn’t one or the other – it’s both. We shouldn’t throw away the baby of employment support with the bathwater of coercion.  

And as people try approaches to employment support that aim to be better than the Work Programme – let’s subject them to scrutiny. If they are voluntary, if they respect everyone’s confidential data, if they foster hope and opportunity – then let’s support them and learn from how disabled people find them. If they don’t – let’s campaign against them. 

Liz Sayce

[1] Reform (2015) Employment and Support Allowance: the case for change. See

[2] Perkins R and Repper J (2015) ‘Parity of esteem’ for mental health services or parity of life chances for those experiencing mental health challenges? Mental Health and Social Inclusion 20 (1) p 1-4

Tuesday, 8 March 2016

I am a Disabled Muslim Woman, so what???

Banane Nafeh, who works on our Personal Budgets Helpline, has written this poem as part of International Women’s Day.

I am a disabled Muslim woman, but not caged
I have so much to be grateful for, Alhamdulillah
My life is not aimless, colourless or pointless
Don’t ridicule or belittle me
I function, I breathe, happy the way I am
I am still alive, even if I am imprisoned physically
I still flourish, grow and glow in many other different ways
I have got people around me helping me too

I am disabled, so what? I am contented with the way I am
I don’t sit idle, shedding tears, waiting for a miracle to make me walk
I am not an emblem of nothingness, lifelessness, uselessness
My wheelchair is my strength, not my weakness
It is my companion, not my enemy
It is my resilience in the face of adversity

I am a woman too
Happy the way I am, created as a ‘woman’
I am a woman every moment, not only on a single day
I cherish my womanhood, my God-given distinctiveness
It is my equity and ownership that I treasure

I am a woman, not a man
I am a woman, not a man,
Don’t drop my prefix ‘WO’
I am ‘me’ not ‘you’
I don’t want to be ‘you’ and you shouldn’t be ‘me’
We are ‘deux’ in our distinctiveness – not in our sameness
We are not fighting in a war zone
It is not the powerful versus the powerless
It is not the oppressor versus the oppressed
Each is honoured and has been given its unique identity

Yes, I am veiled too, so what is the issue?
... Pardon? What did you say?
You came to ‘liberate’ me!! Oh Really!?
No thanks, keep your ‘argument’ to yourself
You are a human being like me, why should I blindly follow you
You are of no benefit to me; you are limited in all your capacity

I am fully ‘liberated’ and enjoying my ultimate ‘libert√©’ at its best!
I am not enslaved by the illusionary deceptive glittering worldly pleasures
I am not invisible, I am not voiceless, I am not mindless
I have a brain to think, a hand to use and a voice to communicate
I have a mirror too, but at home!
I forgot to mention that I have a wardrobe, just like you!

My veil is my freedom, not my cage
My value is not what the fashion magazines say
My worth is not measured by the length of the skirt
My character is not evaluated by the height of shoe heel
I am not a pair of legs to sell your shoes
Nor mini-jupe to market your car
I am not for public consumption,
And certainly not everyman’s property!
I am not the slave of every fashion trend,
But I am ‘√† la mode’ for the one at home

Don’t objectify me as ‘extremist’, ‘backward’, ‘uneducated’, or ‘oppressed’ because of the way I look
My faith adds colour, empowerment, and light into my life
I have learnt through faith to convert my trials into opportunities
An opportunity to explore who am I, what I have in me, how to assert myself, what is the purpose of being HERE
I have a purpose in life, travelling to my ultimate aim
I am a traveller in an empowering serene voyage
Searching for the Real Path of Liberation

I am not expecting you to define my worth, my value lies in my faith
My honour as a human being is measured on a higher scale: it is the scale of righteousness and piety
You accept me or not: this is not my goal
My time is precious, Time is My Life
So, I am not going to waste my entire life convincing you to accept me,
I have other more important things to perform!!!

I am the woman you view, in her face veil, free from the servitude of anyone except her Creator
I don’t erase my Maker from the scene
Do you ever consider your presence to be absent?
Or can I ever deny your presence when you exist?

After all, this is the humble ‘me’
Faith is my inspiration, my life vision
It brought me to the submission of the Lord of universe, the Seen and Unseen

There is no escape from YOU except to YOU
Through YOU (O Allah),
I am at peace with myself and the world around me
Through YOU, I live; I find solace, serenity, tranquillity
My heart is only searching for YOU day and night
My ultimate aim is to please YOU, not anyone else
I am independent of others, but dependent on YOU
All Praise be to YOU who fashioned me
YOU are the ONLY & TRUE LOVE that I am constantly seeking
YOU are the Real Source of Love

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