The Fabian Women's Network invited Disability Rights UK to send someone along to their event to discuss and debate “Disability, Let's Talk About The Barriers”, so I went, and I did.
I said that Disability Rights UK doesn’t want to see the debate framed in terms of “inclusion for the ill and disabled” or in terms of “the damaging narrative in which the most vulnerable are demonised and blamed rather than supported and included”. The problem with such a framing is that it risks portraying disabled people as one group who are all passive recipients of care and it doesn't do enough to recognise that disabled people can make important contributions to society.
Personally, I think it’s important to make more of a distinction between different experiences of disability. It’s important that we come together as ‘disabled people’ to unite on significant campaigns for rights, like rights to independent living; but we also need to understand our differences. Disability clearly encompasses enormous variety and any categorisation is problematic. But broadly there are people with severe impairments or health conditions, who need a lot of support and major adjustments to be able to participate in society; and people whose impairment, with simple adjustments or even none at all, mean they can take part much more easily.
Of course some impairments are permanent, some fluctuating, some progressive; and attitudes towards people with different impairments differ as well (for instance, attitudes towards someone with schizophrenia are different to attitudes to someone with a hearing impairment – both face barriers, but the barriers are different).
Disability Rights UK talks of people with lived experience of disability or long-term health conditions – to give a sense of this variety.
For me, after being at Disability Rights UK for three years, I still find that if we talk only about "disabled people" we can risk downplaying our differences. If we do that, people may have an image in their mind of who a ‘disabled person’ is – perhaps someone with a permanent physical or sensory impairment. I am concerned about the many people who live with pain, fatigue, severe confusion, depression, the most significant learning disabilities and autism and also other challenges from homelessness to alcohol or drug problems.
Disabled people are great contributors to our society – for instance, are twice as likely to be informal carers as non-disabled people – but we cannot assume that there is just a minor barrier to remove and full participation will flow.
People who just need straightforward adjustments can work and contribute if they have the right support. A big “if”, of course. But people living with major pain, fatigue or confusion face far greater challenges. They may not be able to work (either temporarily or permanently), or only be able to with intensive individualised support and major adjustments (for instance, annualised hours – so you can work when you are able to and not when your condition is bad – an arrangement that can work for some types of work, and could be expanded to suit people with fluctuating conditions).
Millions of people of course have this experience of being unable to do much short-term: people who are laid up in bed for a week with flu or laid up in hospital for a fortnight after an accident. But if you are living long-term with a health condition, you may need care and support long-term; and face challenges in being able to contribute fully.
I would like to see greater recognition of the fact that there is a group of disabled people who will need long-term care and support; and will need intensive, and sometimes expensive, support to be able to make choices and participate in society. Someone with significant dementia, for instance, can make choices about important day to day issues if offered options in creative ways (not necessarily through language).
Next, I said that Disability Rights UK doesn’t want to see the debate framed in terms of “barriers” either. There is something negative and disempowering about the term even though it is used with the best of intentions to highlight the multitude and magnitude of the problems that disabled people face everywhere they turn: on transport, at work, in education and at leisure.
It's true that disabled people have had rights under the Disability Discrimination Act of 1995, which are now under the Equalities Act 2010, which are meant to have swept away the barriers created by employers and others. Not that this has happened across the board, of course – though thanks to disabled people Britain is more accessible than it was 20 years ago.
But the term "barriers" frames the problem as something for “them”, the employers and providers and others, to deal with and remove for the sake of "us", the disabled people. Instead of thinking in this traditional way, we could also think in new creative ways about how to deal with the barriers ourselves. That fits in with the discourse about independent living and personal control.
I’ll give two examples, one from history and one about disability. The Maginot Line was a huge defensive barrier built by the French on the border with Germany to stop future invasions. But when World War II came, the Germans simply went around it.
The disability example is somebody with a visual impairment who can't read everyday printed material. Rather than requiring a public service provider to give them information in large print or Braille, for example, they could influence the provider to ensure their website is accessible (sadly some websites still aren’t) and then use text-to-speech software so that they could listen to all of the material themselves. That way, they've both solved the problem themselves and influenced change in a provider, they've empowered themselves and maybe they've found a creative solution that can help other people as well. This approach depends on thinking up creative solutions and on turning barriers into opportunities. It is easily said and hard to do, because creative thinking is sometimes in short supply.
The third point I made was in response to the outline from Kate Green, the Shadow Spokesperson for Disabled People, about Labour's plans to change the Social Security system for the better as Labour bids to win the 2015 election. She talked about reforming the work capability assessment among other such things. It all sounded potentially pointless to me given that Ed Balls has declared that Labour would not reverse any of the Coalition's austerity cuts and has agreed with the welfare cap that George Osborne proposed in his latest Budget. This is a limit on the amount that can be spent on benefits for working age people, set at £119 billion in 2015/2016.
What it means is that money spent on, say, improving the work capability assessment - which would help disabled people - means money not spent on some other group, children, say, who are equally deserving. Whether one political party would be able to make the £119 billion work harder and smarter than others is one on which the jury is out.
I'll end with a comment pertinent to the Cabinet reshuffle news that the role of Minister for Disabled People has gone to Mark Harper. The disability campaigner and blogger, Sue Marsh, said that the government always places ministers for disabled people in the DWP. Why? Because the government thinks that disability is a work issue and a benefits issue rather than anything else.
This agenda is shared by all three main parties and shows how politicians as a group view disabled people. Instead, she argued, why isn't disability seen as a citizenship issue? There could be a disabled people's minister in a central department like the Cabinet Office, so disability can be addressed in the Department of Transport or Education or anywhere else where disability is an issue.
|Robbie Spence is Disability Rights UK’s trainer and an adviser on benefits issues.|