Posts Tagged 'Disability'

Siblings with and without disabilities think differently to each other about the comparison of their young adult experiences – and why it matters

This blog piece is based on the following article: Meltzer, A. (2017) Comparative life experiences: Young adult siblings with and without disabilities’ different understandings of their respective life experiences during young adulthood. Families, Relationships and Societies, early view.

Originally published by Sibling Leadership Network on 1st December 2017. 

 

It’s a familiar feeling. You are a sibling of a person with a disability in your late teens or early 20s. You are busy constructing your life around you – doing new things, making new relationships, learning to drive, moving out of home, finishing school, starting work. Your world is expanding. And yet there is something uncomfortable lingering in your mind. Maybe it is a feeling of guilt, maybe it is a feeling of inequity, maybe it is a feeling of being awkwardly advantaged. Whatever it is, it is a feeling that is there when you look over at the experience of your brother or sister with a disability and see that these life changes that you are making come with more hurdles when your brother or sister tries to do the same things – or perhaps they are things that you believe your brother or sister may never do at all. You value your own life and experiences, but that feeling is always there somewhere. It’s hard to think about and even harder to talk about, especially with your brother or sister themselves – because it feels unkind to point out the discrepancy between you to them – so you bury the feeling and forge ahead, valuing your own experiences, but carrying that sense of disquiet always with you too.

… But what if it did not have to be this way?

What if your brother or sister thought about the situation differently to you?

What if, by never asking them about it, you missed your opportunity to discover that perhaps they do not perceive the differences in the same way as you?

How might that new knowledge help you?

 

What does research say about how each sibling thinks about the comparison?

I conducted research about the relationships between young adult siblings with and without disabilities. I spoke to 25 young people with a disability and 21 of their brothers and sisters about what their sibling relationships are like and how they navigate their lives together during young adulthood. As a researcher, I had the opportunity to ask questions that might usually be too hard to ask directly within families… I had the opportunity to ask what each thought about their respective life experiences during young adulthood, especially the comparison between them.

 

What did siblings of people with disabilities say?

The story that siblings of people with disabilities told me was usually consistent with the scenario at the beginning of this post. Most siblings of people with disabilities generally perceived themselves as advantaged during young adulthood compared to their brothers and sisters. They perceived they had easier and more numerous opportunities – and that in the future they would be able to learn, work and live where and with whom they wanted, but they were unsure if their brother or sister would get to experience the same things as them. Often they appeared to feel that this was an awkward and inequitable difference between then. Often they felt bad about it, and sometimes they felt guilty about it.

 

What did young people with disabilities say?

However, when I spoke to young people with disabilities, they told me a different story – or actually, a range of different stories. Young people with disabilities had a variety of different views about the comparison between them and their brothers and sisters, of which feeling disadvantaged was only one possible option. Across my research, young people with disabilities told me other ways they felt:

  • The difference isn’t about disability.

Some young people with disabilities did not view the comparison between themselves and their brothers and sisters as about disability at all. Instead, they explained the differences between them to be because of other factors that affect all siblings – age differences, making different choices, having different preferences or enjoying different personalities. One sister with a disability said, for example, that she did not mind that all her younger sisters were married when she as the older sister was not, because she preferred the control that comes with being single. When the comparison between siblings’ experiences was not seen as about disability, the differences between them felt far less awkward.

  • I want that too, I just don’t focus on feeling bad about it.

Other young people with disabilities did see the differences between themselves and their brothers and sisters as about disability – and they did indeed want to share their siblings’ experiences – but they did not to focus on feeling too negatively about it. One brother, for example, just stated the differences in a matter of fact way and then moved on to talking about other things he cared about more. Another person noted that she did feel jealous and frustrated about her siblings doing things she could not do easily – such as travelling or moving out of home – but said she also felt genuinely happy for her siblings’ experiences and did not resent them taking up those opportunities, in fact, she wanted them to. Others spoke about advocating or fighting for their right to be able to take up those experiences themselves, but did not blame their siblings for gaining the experiences with greater ease.

  • Actually, there are benefits to the differences between us.

Finally, some young people with disabilities noted benefits to themselves of the differences between them and their brothers and sisters. Some felt that their own experience was better, such as two young women who felt that their disability made their academic achievements appear all the better compared to their siblings. Another person felt that her sister’s experiences acted as a reminder to her family of the level of choice and autonomy that she herself should also be recognised as having, and therefore that her sister’s different experiences actually helped to safeguard her own quality of life.

This range of views highlights that young people with disabilities commonly think differently to their brothers and sisters without disabilities about the comparison between their life experiences during young adulthood. It does not discount the possibility that some young people with disabilities may feel disadvantaged and may resent the inequality they experience compared to their siblings – but it highlights that this is one of a range of possible views. The research also does not suggest that young people with disabilities do not want to share their siblings’ experiences or that they are completely satisfied with their opportunities – many would indeed like more opportunities, the research just highlights that often they are able to see this in a broader perspective of the whole of their lives and relationships. Finally, the research does not represent all young people with disabilities – although people with a range of disabilities were included, including intellectual disability, there is still more to find out about what, for example, people with a high level of support and communication needs think. The research does however show a range of possible views.

 

Why does this matter? What can be gained from listening to what young people with disabilities say?

The findings of this research matter because they highlight that young people with disabilities have different views to their brothers and sisters, and that sometimes they may see their own experiences during young adulthood as more normalised, more empowered or in a different perspective than their siblings without disabilities do. Understanding young people with disabilities’ own views about their lives is important, not only for hearing what they have to say, but also because appreciating their perspectives may help sibling relationships.

Understanding young people with disabilities’ broad range of possible views means that the awkward sense of inequity that some young adult siblings of people with disabilities feel may not always reflect what their brother or sister is actually experiencing – it may reflect a more difficult or troubled view of what disability means in their brother or sister’s life than what that brother or sister actually feels themselves. Understanding the broad range of possible views should not stop siblings of people with disabilities acknowledging and challenging the inequities of their comparative opportunities – however, it does suggest that sibling relationships might improve, and feel less awkward, if young adult siblings of people with disabilities knew more about their brother or sister’s perspective. With this knowledge, young adult siblings with and without disabilities can perhaps together have relationships where they see their comparative experiences in a new light, building on each other’s understandings.

 

Ariella Meltzer is an adult sibling and a researcher at the University of New South Wales in Sydney, Australia.

The full article is available for free in the month of December 2017. You can download it here.

What effect do sanctions & conditionality have on disabled people?

Guest editor Ben Baumberg Geiger introduces the new Journal of Poverty and Social Justice special issue, focusing on disability and conditional social security benefits.

 

Ben Baumberg Geiger

“There are times that policy runs ahead of academic knowledge.

Indeed, this is often the case, for policies must first be introduced before social scientists can study them – and if policy makers were restricted to policies that had been tried and tested, then policy innovation would be impossible.

Yet such innovation can come with considerable risks, as new policies can be introduced and widely imitated, only for social scientists – after some delay – to show that such policies are difficult to implement, can fail to achieve some of their aims, and may even have unforeseen and harmful consequences.

In a new special issue of the Journal of Poverty and Social Justice, we focus on one area where this might be happening: conditionality for sick and disabled social security claimants. While, historically, disabled benefit claimants were largely exempt from seeking work, high-income countries from Australia to Norway have increasingly required disabled claimants to take steps towards finding work, under the threat of financial penalties.

“…high-income countries from Australia to Norway have increasingly required disabled claimants to take steps towards finding work, under the threat of financial penalties.”

The conventional wisdom repeated by bodies such as the OECD is that this is a necessary step towards reducing high benefit claim rates, and, moreover, helps improve the finances, health, and social inclusion of disabled people themselves.

However, there are several challenges to this story. By any principle of justice, claimants cannot reasonably be required to perform actions that they are incapable of doing, but it is difficult for benefits agencies to know exactly what someone can or can’t do. If they get this wrong, conditionality for disabled people can create injustices, and inflict considerable stress on disabled people. Moreover, conditionality may move disabled people further away from work, by both undermining their relationship with their employment support caseworker, and making them less willing to take risks in performing tasks that they are not sure they are capable of doing.

 

Two conflicting stories – but what does the evidence say?

Until now, there has been very little published research trying to establish which of these accounts is correct. This is the aim of the special issue, which includes four research papers looking at experiences from around the world. In the UK, Aaron Reeves looks at on the impacts of conditionality for disabled people claiming unemployment benefit. In Denmark and Sweden, Sara Hultqvist & Iben Nørup look at the different forms of conditionality implemented for young disability benefit claimants. In Germany, Patrizia Aurich-Beerheide & Martin Brussig look at the (failed) implementation of conditionality for disabled people in Germany. And my own paper (see below) brings together these papers with a wider review of evidence and practice, to come to some initial conclusions about what we know so far.

“It is crucial for the wellbeing of disabled people around the world that deeper knowledge and more informed policy go hand-in-hand.”

The special issue also includes four further, slightly more unusual papers about the UK, perhaps the country where these issues have become most hotly contested. Indeed, conditionality for disabled people has been the subject of an award-winning film (I, Daniel Blake) and an award-winning play (Wish List), both of which are reviewed in the special issue (by Alison Wilde and Kim Allen respectively). Jed Meers covers a recent Supreme Court judgement about the ‘bedroom tax’ in the Supreme Court. And we felt it was important to convey the lived experience of conditionality, so a team from the Welfare Conditionality project describe two real-life stories of people who took part in their research.

So at the end of this, what do we know? In my (open access) review paper, I summarise the evidence into four ‘stylized facts’:

1. Requirements for disability benefit claimants are common, but sanctioning is rare (particularly outside of the UK and Australia).

2. Assessment and support are critical in making conditionality work on the ground, and can be combined into ‘passive’, ‘supportive’, ‘demanding’ or ‘compliance-based’ systems.

3. The limited but robust existing evidence suggests that sanctioning may have zero or even negative impacts on work-related outcomes for disabled people.

4. Individual case studies in ‘compliance-based’ systems suggest that sanctioning in the absence of other support can lead to destitution, and that conditionality can harm mental health.

While we need to know more, it is already clear that we cannot assume that conditionality for disabled benefit claimants is easy to implement, nor that it will have purely positive consequences. Policy may have run ahead, but research is now starting to catch up. It is crucial for the wellbeing of disabled people around the world that deeper knowledge and more informed policy go hand-in-hand from this point.

This is an edited version of the (free) introduction to the special issue, and is simultaneously being posted on the Policy Press blog and my own Rethinking Incapacity blog. The full special issue can be accessed here.

 

You can read the Disability and Conditional Social Security Benefits’ special issue of the Journal of Poverty and Social Justice here. 

For all the latest Journal news and free articles:

• Sign up to the Journal of Poverty and Social Justice newsletter

• Follow @JPSJ_Journal on Twitter.

International Day of Persons with Disabilities (IDPD) – 3 December

Hardly a day seems to pass that isn’t marked in some way or another. Today is International Day of Persons with Disabilities (#IDPD) and so we’ve invited academic and Policy Press author Alan Roulstone to share his thoughts on the value of such days and how the perception of disability has or hasn’t shifted since he last blogged for us before the Olympics in 2012. He writes:

Alan Roulstone

Alan Roulstone

When reflecting on the forthcoming International Day of Persons with Disabilities (3 December) I was drawn to one of my favourite passages in the English literary canon:

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us… [Dickens, Tale of Two Cities, 1859]

“so what”

When applied to disabled people and the realities of life in 21st Century Europe and beyond, we can see that many inhumane long-stay institutions have now closed, we can witness higher expectations amongst disabled people, some get paid work, be married and take part in the mainstream of life. At best there might even be a sense of “so what” about aspects of these questions: that disabled people are simply living alongside everyone else, in ordinary houses, sharing the same dreams, getting distracted by the same distractions.

The recent Olympics can even be posited to have raised the bar yet further, in increasing awareness of what disabled people can do, their physical prowess, their endurance and grit in climbing to the top of their sport. Images of famous disabled people abound: Ellie Simmons, Stephen Hawking, Simon Weston, Ade Adepitan. So why no sounds of clarions, no frisson of excitement and sense of no-turning back at the prospect of the IDPD?

“just as you think everything is okay and the wheels of social life are running smoothly you hit an inevitable snag”

Well it would be churlish to deny the origins of the day in the Disabled People’s Movement’s international struggle to be part of the mainstream, and the UN’s official support for this over time. It would be wrong to overlook the great achievements of many disabled people, whether or not they see themselves as disabled.

The best way to sum up the paradox of being disabled is that just as you think everything is okay and the wheels of social life are running smoothly you hit an inevitable snag. A lift seems permanently out-of-order, the man at the bus stop stares at you for just a little too long, you find yourself in jobs that are made precarious by public sector cuts.

These in turn could be seen as ‘just bad days’, random and unpredictable events that could affect anyone. This might be the case. However the evidence continues to suggest that as a disabled person the paid labour market remains harder to access, public transport remains a site of contestation, most recently narrated as wheelchair users vs babies-in-buggies, and that you are more likely to be the victim of violent crime.

Despite the Olympics, you find your only accessible swimming pool is earmarked for closure. Then you open your local paper and read that another learning disabled adult has been seriously assaulted or a blind man pushed onto a railway track [as happened recently in Chelmsford, Essex].

Broad brush

The International Day of Persons with Disabilities aims:
…. to promote an understanding of disability issues and mobilise support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life [UN Enable]

As with any very broad brush objective by a global body such as the UN, the sentiments are profoundly welcome. The fact that disabled people can be part of a culture and make their own identities and cultures is so important. Many achievements have been registered in the lives of disabled people and it would be a curmudgeon who refused to recognise these. Indeed, there is a moral obligation to acknowledge these at every possible juncture.

“Do they change society, or to be a little cynical, do they ride the wave of change?”

We do not know, however, just how much UN initiatives, Conventions and events really make a difference. Do they change society, or to be a little cynical, do they ride the wave of change? Certainly the UN’s role in the global South is much more defined and clearly observable; in the global North state systems, histories and cultures mediate in a complex way such initiatives and Conventions. The failure of many states to ratify, or more commonly to substantiate, pledges is the real issue perhaps, as is how to measure this substantiation.

Longer-run processes of global investment patterns, an ageing population, credential inflation and resource scarcity all serve to challenge disabled people’s social integration. Meanwhile some disabled people are forced to live in institutions they would rather not live in [Winterbourne View being an obvious example]. Conversely some disabled older people wish to stay in the ‘care’ home and are being decanted into uncertain futures in the name of modernisation [cuts?]. Health spending on acute care has held up relatively speaking [Kings Fund, 2013], but spending on social care has led to an unprecedented post-war crisis in social support.

I shall be marking the IDPD unobstrusively. I shall emit a cautious smile or two which may perplex the person sitting next to me on my commuter train, a smile of recognition that disabled people matter. I shall be sobered by the first bad news story about disabled people’s lives and struggles I read later that day. Trust me, I don’t go looking for them.

It was the best of times and yet the worst of times…….

If you liked this you might like…

Understanding disability policy, edited by Alan Roulstone, Simon Prideauxmore and is available from Policy Press website at 20% discount.

A free chapter from the book is also available for you to read here.

Alan’s previous guest blog can be found here: The Paralympic Legacy – A New Dawn or a False Dawn for Disabled People? 

The views and opinions expressed on this blog site are solely those of the original blogpost authors and other contributors. These views and opinions do not necessarily represent those of the Policy Press and/or any/all contributors to this site.

The Paralympic Legacy – A New Dawn or a False Dawn for Disabled People?

The Paralympics is currently taking place in the UK against a backdrop of heavy cuts to disability benefits. George Osborne was booed when he attended a medal ceremony, as was Theresa May, and the sponsorship of Atos (who carry out the controversial tests to determine whether claimants of incapacity benefit are “fit to work”) has caused controversy and protest. Here, Alan Roulstone, co-author of Understanding Disability Policy, examines the 2012 Paralympic legacy and whether it could be a false dawn for disabled people:

Alan Roulstone

There has been much talk ahead of and during the London Paralympics 2012 of the legacy of the Paralympics in changing attitudes towards disabled people. The British Prime Minister captured these sentiments of hope at the games’ opening ceremony noting the promise for: “Eyes are being opened, attitudes hopefully shifted”. This and many similar comments by social leaders are suggesting a longer term shift in attitudes towards disabled people engendered by the successes of disabled athletes.

Such change would of course be very welcome indeed, especially during a period of recession when disabled people are struggling to retain or gain paid work. Indeed, even the most ambivalent observer could not deny the power and social exuberance at the sight of very fit and talented disabled athletes attaining the very pinnacle of sporting achievement. That said, the assertion that a wider and lasting legacy may be seen in attitudes and treatments of disabled people has to be viewed with real caution.

Firstly, there is no evidence at all that the treatment of disabled people in countries hosting Paralympic games has improved the lot for disabled people more generally. There is little evidence that the Sydney or Beijing Paralympics have discernibly improved disabled people’s lives. China continues to be coy about the use and extent of institutions for many even young disabled people. Australia is busy implementing a Basics card for welfare recipients, many of whom are disabled, which will ensure that spending can be monitored and that swathes of the Australian population will be denied access to the parallel cash economy. This, it is feared, will enshrine a form of social apartheid where types of spend will be associated with welfare status, the effects of which will be potentially deeply stigmatising.

A number of things are being muddled, it can be argued, in the assertion that many disabled people can be helped by the Paralympics being staged in London. The first relates to disability diversity. Although the different events and challenges see hugely diverse categorisations being applied -amputee, double amputee, muscle weakness, sight limitations – the common denominator here is that of elite trained, fit, largely young individuals with physical impairments. These are not simply athletes, but elite athletes who have made a career in a given sport. No one denies the sheer effort and determination in achieving such levels in sport. Many of those however facing the worst attitudes and treatment barriers are people who are unwell, may have flare-up conditions ( such as arthritis, multiple sclerosis, sickle cell disease) which makes even limited physical activity difficult.

There is of course a risk that only those disabled people who are seen to overcome their predicament will be treated as heros and well regarded;  or to use a high-jump metaphor, that the bar of social expectation will be set even higher. This mirrors what happened when stories of austistic savants began to hit the public consciousness in the 1980s and a number of my friends and colleagues with autism/Aspergers syndrome were asked what it was they could do that was special. Sometimes, a little knowledge is of course a dangerous thing.

The reality for many disabled people is that, whilst some can work, given the opportunity, and many can contribute to a range of important social activities, they may face major social, environmental  and attitude barriers in everyday life. They are some distance from the heroic image of a medal winner mounting a podium. However as a disability researcher and policy writer it has long been my view that disabled people are heroic in contending with the daily obstacles of the built environment, the shifting of the ‘welfare category’ in a way that severely disadvantages former welfare recipients.

The most difficult aspect of the Paralympics for many disabled people has been the bizarre juxtaposition of seeing great sporting achievements (rightly) being applauded and poster girl/boy images of photogenic disabled people alongside arguably the most aggressing and top-down reform of welfare since the Poor Law. This is not simply a reform of welfare along the lines of the Fowler reforms of the 1980s, this is a fundamental reassertion of who counts as disabled. Disabled people once accredited by medical and DWP/DSS authorities as ‘disabled for life’ risk being told they are  no longer ‘that disabled’ and will be reviewed periodically or worse still have been taken off Disability Living Allowance. The same mindset is already being applied to Employment Support Allowance recipients/applicants and there are many horror stories as to who is being told they are ‘fit for work’, including people with terminal cancer and brain tumours.

Disabled people are diverse, it goes without saying. The binary worldview that there are heroes and villains cannot justly be applied to disability. Disability is complex – people may emphasise their challenges to get the welfare support to which they are entitled, but will of necessity have to emphasise what they can do when applying for paid work – this says more about contemporary society than it does about disabled people. The sooner sick and disabled people are seen as contending with different barriers – from hurdles, high jumps, to medical and welfare systems – the better. This type of re-evaluation would be a truly Olympic change to policy thinking.

Alan Roulstone is Professor of Applied Social Sciences (Disability Policy) at Northumbria University and Honorary Professor at Swansea University, UK.

Understanding disability policy by Alan Roulstone and Simon Prideaux is available for only £15.00 (RRP £21.99) during September from our website.  


Enter your email address to follow this blog and receive notifications of new posts by email.

Twitter Updates

Archives

Creative Commons License

Republish our articles for free, online or in print.

The work on the Policy Press blog is licensed under a Creative Commons licence.