All Posts by Chris Whit

1 The ‘Editing Out’ of Disabled People from society

A rather sinister thought crossed my mind as I was munching my way through my Easter Eggs and hot cross buns and mulling over the arrival of the notification that I would need to start my claim for PIP.

I had seen a story that there were no school places for people with Special Educational Needs. The gravity of this, and its profound potential consequences, really hit home to me as someone who had begun life in a ‘special’ school (as it was then called) in 1985 and had the opportunity to transfer to a ‘mainstream’ school in what at the time was a brave experiment and almost unheard of when it happened thanks to some really progressive (and brave!) teachers and parents.

Following some surgeries, I then returned to the special school a few years later, before going on to mainstream primary and later secondary school.  Even at a young age I could see that both places had their own value and an important, distinctive role to play.  From there, I was lucky enough to go on to get my degree, masters and PhD.  I can say with near complete certainty though, that I wouldn’t have had those opportunities if I couldn’t have even got to school in the first place.Educational exclusion is particularly problematic and damaging to the life chances and prospects of young people.

Young people then are effectively being ‘edited out’ from the system, excluded before they can even get any kind of place within a structure that either isn’t equipped for their needs, or worse still, doesn’t want them.

Being ‘edited out’ in other contexts?

Does this happen in other contexts?  I wanted to know more.  I spent a while looking around the literature and found that this idea in and of itself is nothing new.  Disabled people had long encountered structural barriers to their progression in society.  This is, after all, what the social model of disability has told us for many years.

What struck me was the acuteness of the problems faced in the present times.  Disabled people are still contending with the consequences of welfare reform (e.g. PIP, ‘Bedroom Tax’) coupled with other things to ensure they are ‘edited out’ and invisible from public life.  There are numerous other examples of this too.  Take for example, well documented issues on public transport for disabled people, or even the campaign to remove straws from public places.  A straw is one of the most important tools that many disabled people can have, and without them, simple things like getting a drink can be a non starter.

A particularly sinister ‘editing out’ trend comes in disabled people being asked to pay for their own care contributions (something which is currently under consultation in my own local authority.) The equation is quite a simple and stark one..pay more for your own care..if you can’t afford to have the care…don’t have it and the impact on quality of life is catastrophic.  You are once more ‘edited out’ and precluded from accessing society before you even leave the door.

And a paradox…

There is an abundance of technology and mechanisms that should make society more inclusive than ever before.  The very computer i’m writing this article on is a prime example.  Therein it could be said, lies the rub.  Technology costs…and how is one supposed to afford it when eating could well be a struggle, according to recent findings.

So what to do?

There is no doubt, dear readers, that this is bleak stuff.  I hope, as I move beyond the preliminary sketch presented here and dig deeper, that there is evidence to disprove my theory, and for  my working hypothesis to be disproved….time to dig deeper.  I’ll keep you posted.

 

 

A tale of two narratives and the contested representation of disabled people

It strikes me that from what I see, hear and read at the moment, that there is a very polarised contest going on in terms of how disabled people are talked about, thought about and represented.  Discussion and debate over the representation of disabled people is in and of itself nothing new.  As I was researching this blog, I found a really interesting book on how disabled people are represented in the media from the early 1990’s.  Many of those representations are still with us today.  What feels different (and I emphasise that this is a feeling rather than I something which I can empirically verify or ‘prove’ as such) is the significance of the challenges that disabled people are facing in current times, coupled with the unparalleled importance of social media channels today.

So for me there is a tale of two narratives which are diametrically opposed.  On the one hand there is a ‘contribution’ narrative, which talks about the positive impact disabled people can make through their approach to life and skills.  An example of this from a few days ago was the parliamentary discussion of the role that disabled people could make to economic growth.  The report from this discussion makes it clear that disabled people have a significant contribution to make in several different ways and is well worth a read.  A further example is a channel 4 publication on the importance of disabled talent in the media industry, which in many ways is an extended testament to the progressive approach taken by this broadcaster.

On the other hand there is the ‘burden’ based narrative, which depicts disabled people must, as Colin Barnes puts it, be ‘cared for’ together with the cost and complexity that this involves.  This can take a range of forms.  There was recent outcry over a BBC Ouch podcast which, it its headline, explicitly discussed whether having a disabled partner was a ‘burden.’  The response to this will also give us clues as to how to combat this narrative, which I will return to later.

I first want to highlight a deeply troubling aspect of this narrative though: the renaissance of the medical model.  Increasingly, it is being left to disabled people to find their own solutions to their impairments.  In an educational context, I have been disturbed at the increasingly contested state of special educational needs provision.  The denial of young disabled people of access to educational opportunity due to increasing amounts of litigation is a worrying development.  Other examples of the return of the medical model include requiring disabled people to contribute to their own social care costs and fund their own wheelchairs.

Whilst I am normally quick to call for and point to a need for nuance, I really can’t see any middle ground between these narratives.   Opposing the burden based narrative in a swift and confident fashion is important.  In the case of the BBC Ouch podcast, thankfully the range and volume of response to the characterisation of disabled people as ‘burdens’ was vast.  This resulted in the offending text being edited and an apology being made.  It could easy for the medical model to ‘creep’ its way back into our default way of thinking, so it is by challenging its expressions that this can be combatted.

The case for the ‘contribution’ based narrative should also continue to be made in an assertive way.  Even allowing for my own bias, it is clear to me that disabled people have a pivotal role to play in contemporary society in so many ways. Make no mistake though that the hard fought advances that we have seen for disabled people can be easily eroded, and constant vigilance against this is required.  Long may the contribution based narrative emerge, and we all have a role to play in ensuring the ‘burden’ based narrative is consigned to the past, never to return.

A new approach to disability activism:Some first thoughts

This is something I have been wrestling with for a while…and something I wanted to try and make a constructive contribution with. For a long time I have observed disability activism and seen some instances where it has gained more traction than others. I have also wondered about what it means to be an ‘activist’ or a ‘campaigner’ and wanted to help contribute to this debate. 

With this in mind, I outline some principles around what a new approach to disability activism could look like. I do so with some trepidation, and with the heavy caveat that these are first thoughts. I am though of the conviction that, used with a principled approach, disability activism has far greater (and more consistent) scope to have impact than it does currently.

Principles

In this section I present a very broad brush outline of the principles underpinning a new approach to disability activism. These are that activism should be goal directed, evidence based, nuanced, proportional and ideologically transparent.

 Goal directed

Activism must have a clear idea concerning its objective(s) and how the activism intends to contribute to their realisation. Being goal directed could also help in the engagement of individuals who share a similar or common objective

 Evidence based

In order to make a telling impact, what is said must be grounded in evidence, either of an empirical or experiential nature. Being evidence based will mean that findings can be discussed with authority, rather than being dismissed as being merely purely anecdotal in nature. Evidence could take the form of a quantitative, qualitative nature or a mix methods approach as each methodological approach has merits.

 Nuanced

The term ‘disability’ encompasses a wide range of impairments and as such, any activism carried out should take this range into account. Giving due attention to nuance will help to highlight the diversity that is covered when discussing issues related to impairment and give due respect to difference.

 Proportional

A sense of proportionality matters in order to ensure the effort directed to addressing an issue is relative to its significance. Moreover, this sense of proportionality is intended to avoid disproportionate responses to an issue. To give an example, boycotting a manufacturer because one of its employees used a disabled parking space in an isolated occurrence would be, it is suggested, a disproportionate response to this infraction. 

Ideologically transparent

Some disability activism is informed by a clear ideological standpoint which can help inform the stance taken in relation to particular issues. In the policy making arena Barrilleaux et al (2016) have suggested that ideas should be ideologically neutral. 

Given the nature of disability activism, much of which draws from personal conviction and responses to government and social policy, the author doubts it is possible to separate the personal from the political. Being ideologically transparent though means that ideas can be discussed with the nature of an influential standpoints disclosed. 

Learning from history: Using the past as a springboard for the present

In writing these first thoughts, I do so in the knowledge that the disability rights movement has a long and rich history which is of import with the above in mind. Here there is work to do in order to identify and learn from past endeavours in order to inform and develop present efforts.

I hope these first thoughts are useful, and I would welcome thoughts on them. I intend to develop them in the near future. Good disability activism, in order to make the case for the multitude of issues that those with impairments are facing in current challenging times, is in the interest of so many.

Swimming with Dolphins 

As we approach the conclusion of another great holiday here in Cuba, there was one thing left to do: swim with Dolphins.

It has been on my bucket list for a while now but I’d not taken the opportunity on our previous visits. This time, Fran said I would regret it if I didn’t, especially as I was with my parents and it’s the stuff great memories are made of.

There were several things that struck me about the visit and the broader thoughts this led to. First was the majesty of the dolphins we saw, possessing tremendous power and yet moving with such care and grace.

Secondly, there was the emotional intelligence the dolphins had. I had been told before that they would pick up on how I was moving and engage with me in a different way as a result. As a person, I tend to believe things when the evidence demonstrates it is so. 

Sure enough, the dolphins studied me very carefully as I was waiting to enter the water. It was there our connection started. They helped me to interact with them, guided me in the water and didn’t playfully splash me (unlike the rest of our small group!) Seeing, and experiencing, is believing. 

This also reminded me a lot about partnership and the need to carefully learn from each other. This has been something of the theme of the holiday, especially given my previous blog (http://www.disabilityspeaks.com/2017/02/02/the-stare/) and events in America which have left me utterly bemused.

Oh that such dolphin emotional intelligence was a little more abundant. I think we all could do with a bit more of that at times, and if dolphins can do it so can we!

On my visit to Cuba I’ve also been struck by how accommodating the people are and how they will work to make anything possible. This mindset is all the more impressive given the lack of resources here. I’m fairly certain that the understanding of the social model of disability isn’t exactly on the priority list here. 

Yet things just happen, adjustments get made and there needs to be no court cases to ensure this is so. Maybe we should all be a little more Cuban too!

There is also the issue of risk. My dad, despite being a pensioner, had never been in the sea where he couldn’t touch the floor. We could have taken a shallow dolphin visit where we were up to our mid line in the water. We were able to say to my dad though that given we had a life jacket, the deeper dolphin area was worth a calculated risk. He took that risk and was thoroughly rewarded. Often, calculated risks are worth the rewards they bring! 

It could be argued that this words are tinged with the rose tinted nature of holiday spectacles. Perhaps so. Whatever the way I’m looking at things, I’d recommend the experience I had to anyone. Being around dolphins is an experience not to be missed.

1 The stare

This blog arose out of an encounter I had with Fran. A woman stared at Fran for so long I think she mistook it for a life drawing class. This set me thinking about similar encounters we had both experienced and the impact they could have. I hope it proves thought provoking.

Have you ever felt someone looking at you out of the corner of your eye? Forensically they survey you from head to toe, as if struck by the mystery and novelty of what they see. On occasion, they attempt to do so more subtly, quickly glancing up from what they are doing, only to look away and glance back again, a second glimpse to confirm what they have seen.
Imagine it happening every day. Imagine it happening ten times a day. This becomes second nature. The choice of yours then becomes how to react. Do you acknowledge it? Do you ignore it? Do you smile? Do you perhaps strike up a conversation?

Each time you have to make an assessment. It even becomes part of your daily routine. Personally, I now almost accept that to notice difference in any form is part of human nature. The stares become second nature and in all but the most extreme cases, you move on. Over time a subconscious resistance to the stares build up and you manage your awareness of peripheral vision accordingly.

In a different context, each time we pass an accident on the motorway, the phenomenon of rubbernecking can take hold. Motorists slow to survey the scene on the opposing carriageway.Then, the traffic resumes and you continue on your journey. 

At other times though, the stares make an impact on the resistance you have. Like everyone you have a bad day and sometimes you crave annononity. Sometimes someone stares too much, and remarks just that little too loud and it is hurtful. This is especially the case on a night out. I am not drunk before I walk into the pub. 

One exception to this is children, those natural curiosity about the world causes them to ask questions. Innocently they ask what’s happened to you. Often, mortified, the parents usher their children away. 

Personally I think it is the children who have it right. The stares come from a desire to understand the difference they see. I’d rather people ask in the want to increase their understanding, than to not and still wonder. It is natural to want to know more.

In some instances it is different. Every day we have conversations with people who get to know us. That’s the real measure. However forensic the stare, there is no substitute for that.

I’ll try and resist the temptation to get too preachy here..but recent events show the importance of being able to connect with others and understand that which is different.

We can’t simply walk on by and get on with our lives, nor merely ban enquiry about that which may make us feel awkward or threatened (are you listening Mr Trump?)

It is time we moved beyond the stare (and well and truly kicked arbitrary bans into touch!).

The Paradox of being called inspirational 

I bet you thought that because I was on holiday you were safe from blogs for a bit. Far from it…my mind just finds other things to think about. Cuba is lovely and time in the heat reminds me of the value of rest!

Every so often Fran and I get told that we are inspirational. This is something I struggle with a bit. Fran is inspiring..a five time world champion..I get that..but for me I am less sure! I think that everyone is in their own way, it’s just that some ways are more prominent than others.

So the chap that called us inspirational was a great guy. He, his wife and daughter all worked in various ways within the learning disability sector in Canada. So it wasn’t a kind of patronising ‘inspirational’ which was good. This kind of inspirational, well meant as it is, is difficult. You smile and gently challenge, pointing out that we live independently and that is usually enough to make people think.

So why then is being called inspirational a paradox? For me it is because it shows how much work there is to be done whilst at the same time showing a version of what is possible.

The basis on which Fran and I are called inspirational is essentially down to the fact that we get on with life in that we:

-Both work: We’re frequently told by professionals and others that we are the only disabled people they see or know who have jobs. 

-Own our own accessible house: This is probably more down to the shortage of accessible housing than anything else! 

-Go on holidays by ourselves: Through careful research it is possible to find accessible places

So being called inspirational for these things, which I would argue are not particularly remarkable, makes me a bit sad. Shouldn’t everyone with an impairment be able to do these things? The fact that Fran and I are regarded as being exceptional for doing so shows the challenges disabled people can face. These challenges are arguably more profound and stark than ever before given the unprecedented social and personal political landscape we find ourselves in.

According to my mum (we’ve come on holiday with my parents as we’ve raved about our resort!) I under estimate how difficult my own life is. She gives the example of it taking 10 minutes to put my shoes on to illustrate this point! Maybe she makes a good one.

My standards are really high and that’s why being called inspirational fires me up. I want to keep making a difference so that I’m not regarded as inspirational any more. That’s the power that this slightly awkward and ill fitting label gives. 

So there is the paradox: Being inspirational is sad and a call to action all at the same time.  I maintain that everyone is inspirational in their own way. 

The form counselling I’m training in suggests that success is doing what we can with the resources we have. I’ll raise a mojito filled glass to that!

The US election and lessons to learn for UK politics 

I don’t normally blog about politics but it’s something I feel really passionate about and I’ve even toyed with the notion of trying to become an MP one day. Political policy has the capacity to directly shape every aspect of our lives which is why having good people in power matters.
While I’ve been in Las Vegas I’ve been struck by several things about the Anerican election and what it means for us. 

1. The need to have good candidates and choice: Quite how Trump especially has even been allowed to get here is beyond me. Politics is only as good as the quality and qualifications of those involved with it. If I were an American voter now I’d really feel as if I was between a rock and a hard place with my vote. Where is the good option.

2. Politics needs to connect and stop apathy winning: Much of what I’ve seen in the coverage has been meaninglessness for me. High on petty points scoring and short on substance. Politics needs to speak to all of us and provoke informed debate. I predict what we will see in voting is a continuation of low turnout, which is bad for everyone.

3. The need for a more inclusive approach: I’m struck by how incestious American politics appears to be. Bush or Clinton appears to mean you have a lifetime in politics and this needs to be shaken up. Likewise in the UK, it shouldn’t just be about Oxbridge educated, middle aged people with money. We need a range of views to make politics speak to everyone.

4. More solutions and less negativity: We live in challenging times. This means the need for solutions to our pressing problems is required more than ever before. Negative attack ads over here are so abundant and do nothing to offer the solutions we all need.

5. The importance of objective and informative media coverage: Watching media coverage over here I am so thankful for our broadcast media in the UK. The bias of the likes of Fox, and even CNN is astonishing. We need objective media coverage to highlight issues, ask questions and bring politics to life.

The closing days of the contest for the Whitehouse will be absorbing. The winner of the contest will impact us all in many ways. Make your choice with care America.

2 Reflections on experiences of America with an impairment 

This has to be one of the more surreal settings I’ve written a blog in. I’m sat in the middle of a noisy Las Vegas casino surrounded by sirens, bells and in a haze of smoke.

I’m conscious that I’ve had something of a blog draught of late. I’ve not felt moved to write about anything and only want to do so when I feel I’ve something of interest and (hopefully!) value to say. Thank you to those of you who have enquirered when my next blog will be.

The purpose of this blog is to reflect on my personal perspectives of America as a tourist. Over the past few years I’ve been fortunate to visit Vegas (twice), New York and Florida. So whilst this doesn’t claim to be a scientific study I’m confident that I have a range of experiences from which to draw.

The good: Being treated as a consumer and the impact this has

I think the American attitude I have encountered is ahead of the U.K. for one simple reason: Here I am treated as a consumer and services are easier to access as a result. The consequence of this is that life is a lot more accessible. Granted, as a tourist I may be more outgoing than on a day to day basis but it’s definitely easier to get about. So there is a positive social by product..I can do more and see more as a result.

It feels as if America has embraced the social model too. Buildings are adapted to allow access so that as a consumer I can get in and spend my money. Though it is a subjective thing it feels a bit easier to walk tall as a result. My money is as good as everyone else’s!

Though much has been written about the purchasing power of the ‘purple pound’ in the U.K. I think we lag behind. Fundamentally, I would argue that disabled people aren’t generally seen as consumers and marketed to in the way that other consumer groups are. Sport aside, disabled people tend to be discussed as passive recipients of state welfare rather than as active consumers. That can (but not always) filter it’s way though to social  and even political contexts as a consequence.
The bad: Insurance and healthcare

The consequence of being seen as a consumer has its negative side too. Insurance and healthcare is very much a product here and that has profound implications for someone with an impairment.

Getting insurance to travel to the states can be a mission. Every day life in the states would be impractical. I just couldn’t afford it. The health system appears to be very much a live issue in the election debates.

For the well documented pressures and shortcomings of the NHS in the hands of its political masters the principle of free healthcare to all at the point of need is a game changer and one we must retain.

I dread to think about the adoption of an insurance based model and its negative consequences in the uk. 

As with so many things, I hope we can retain the positives and learn from the attitude described above.

I had better go and find my long stuffering wife and go and embrace my consumer status some more!  

#filltheseats and why it matters

If you have read this blog for a while you’ll know that Rio has had a troubled build up to the Paralympics. It is right to highlight a much more positive development in the form of the #filltheseats campaign.

This campaign will help Brazilian children see the Paralympic Games. This is such a powerful thing. I’ll never forget taking my uncle to see Fran compete at Ponds Forge in Sheffield.

He had never seen any disability sport prior to that point. It’s a big cliche but he was inspired and moved by what he saw. Most importantly he also left the day with a greater understanding of what people could do despite their impairments. That day was 5 years ago now and is still talked about now.

This is why the #filltheseats campaign is so important. It will bring Paralympic sport and the awareness of disability that comes with it to thousands of children who will carry it with them for the rest of their lives.

#filltheseats has also been backed by a whole host of people including the International Paralympic Committee, Coldplay and Paralympic athletes across the globe.

You can find out more here. Please support this initiative however you can and tweet using #filltheseats. Thank you:)

Brazilian Vogue and Rio Paralympics: An insulting way to miss the point?

So you are the host country to host a sporting event. It’s not going great, ticket sales are down and the eyes of the world are on you. So you have to do something, right?

Hmm. Perhaps this was how the meeting that lay behind the Brazilian vogue photo shoot in question. To promote the Rio Paralympics, non disabled models were photoshopped to appear disabled

This has not gone down too well to say the least. I can see why. The Paralympics has arguably a broader significance than the Olympics in terms of promoting understanding of disability and the issues around it. The advert actually creates a barrier to that, obscuring disability, which isn’t something that can be merely airbrushed out.

A far more effective approach has been consistently taken by Channel 4 in the UK. Here the message has been about presenting athletes who achieve what they do, working with their bodies to achieve what they do in sport. This surely is a more powerful message.

It is troubling that a host country of the Paralympics can display such a lack of understanding of the meaning and spirit of the games just a few days away from the start of it.

An understanding of disability is help to be arrived at by a careful representation of it. Disabled people don’t have the luxury of choosing to be disabled. Every day brings challenges to negotiate that can’t be magicked away. The only solution comes in the form of hard work. 

This is where the Paralympics has its wider social value, and why it resonates so powerfully. The games also has a vital responsibility to represent the broad spectrum of impairments that people have. Again, the Brazilian Vogue advert falls down here. 

Some will argue that for the Paralympics, any publicity is good publicity. This may especially the case given the troubled build up to Rio and poor ticket sales. I would counter by saying in which other context would it be ok to sell a product by distortion?  Perhaps if a better plan was devised to promote the games from the outset, such desperate measures would not have been required.

Personally I think the whole episode is in danger of being a wider reflection of the games itself: A missed opportunity. It is good that the photo shoot has been highlighted and that we can have wider discussion around it. Every empty seat we will see in Rio though is representative of both a wider failure to execute a properly planned games and a chance to learn more about disability generally. The chance to see anyone being world class is an opportunity that should never be passed up.

One only hopes that Brazil does a better job in responding to Paralympians. Come the games themselves, there will be no airbrushed representations available, which is an entirely good thing.