Tuesday, April 17, 2012

I'll Stand By You? By Kaliya Franklin & Dawn Willis

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has" 

What does 'disabled' mean? Is it all about wheelchairs and white sticks as so often the public perceive or is that perception fed by the history of the disability rights movement, which was dominated by physically disabled, educated, white, middle class men? Asking around my friends, I get all kinds of interesting answers. Most disability campaigners would agree that 'disabled' covers a multitude of life affecting conditions, whether they be conditions from birth such as spina bifida or a learning disability, accidents later in life, chronic illness and mental health conditions. But when I ask my not yet disabled friends they give very different answers. Commenting on the recent Channel 4 show, The Undateables, my friends told me how inappropriate they thought it was to include Carolynne, an attractive blonde lady who happens to use a wheelchair alongside those with profound facial disfigurements or learning disabilties. There was no suggestion that Carolynne wasn't disabled, but a very clear recognition from the 'not yet disabled' world that the challenges she faces as a result of her disability have marked differences from other groups of disabled people. 

This leads me to wonder, perhaps the 'not yet disabled' world have a much better grasp of the vastness of disability than we disableds give them credit for, perhaps more so than we disableds appear to be demonstrating at the moment to ourselves and the wider world via the very public platforms of social media. 

It's a frightening and stressful time for disabled people as benefit cuts begin to bite and disability hate crime rises. Frequently demonised by both the media and politicians, for many of us isolated from the mainstream world by ill health or lack of equipment and support, social media is our only option for making friends and forming support networks. Fear and stress create a toxic environment, which often bubbles over into online spats which spiral rapidly out of control. 

For ALL disabled people the next few years will be challenging, as we will be the first to be forced through Cameron's Big Society experiment, to rely more upon our communities and less upon the state, regardless of the appropriateness or safety of that community support, if it can even be found. Ironically, it's been disabled people who've demonstrated that ability to build community support over the past two years, coming together to campaign on shared issues, whilst putting aside our differences. That's what any government most fears - a cohesive protest movement who are capable of agreeing to disagree to form a strong coalition of opposition. 

That will be our most pressing challenge over the next few years, to find the wisdom and maturity to learn from our mistakes, and those of others and apply those lessons to our own situation. We know that early disability rights campaigners made the mistake of distancing themselves from those with learning disability or mental health problems. We are able to understand the reasons which led those early campaigners to choose that path, and with hindsight we have benefits of judgement they did not, as will future campaigners from our misjudgements. For contemporary disabled people, we know our biggest chance of success in the continued struggle for full equality is to unite all disabled people, there are at least 10 million of us in the UK alone. Most of those people will not be entitled to benefits, but they are entitled to protection under the law as disabled people, whether that be in challenging physical or attitudinal barriers. 

We can celebrate the diversity of our disabled movement and culture, learn to use our skills to support each other practically and emotionally, but most importantly we must be able to disagree constructively and respectfully. The recent Remploy closures highlight this potential division - charities and organisations which act for, not on behalf of disabled people argue that this is a neccessary step towards progress, whilst distraught workers weep at being sacrificied on an altar of an ideal world. Grassroots disabled campaigners have shown a maturity of judgement by expressing their preference towards mainstream employment at the same time as supporting those who make another choice for themselves.

Choice is at the heart of this issue. All disabled people, whatever the reason they are disabled want freedom of choice to live our own lives as we decide. Disabled people are more aware than any other group what it is like to be told what is best for us by people without direct experience of disability. We hate and resent it, but then all too often go on to apply that 'what is best for you' attitude to other disabled people. 

The biggest choice we have to make at the moment is whether as a civil rights movement we are able to set aside our differences, to recognise the dangers inherent in labelling one person as more or less disabled than another and to continue to band together as the strong, powerful force we have shown we can be.

Our choice is simple;

"Alone we whisper" or "Together we shout" 

Kaliya Franklin

This is a really encouraging post reminding us all of why we came together in the first place. It is enough already that the Government has chosen to allow untrained DWP and ATOS staff to determine how 'disabled' people are, and in turn how deserving they are of welfare benefits, and to define work and capability. As a campaigning movement we can't afford to be seen to be divided.

In just one week I have learned of the devastating effects of both welfare benefit changes and mental illness on two people who live close to me:  A mentally ill lady who learned that her Disability Living Allowance assessment had resulted in her being removed from the benefit, which meant her income support was stopped, and in turn her housing benefit, She's unwell, and in complete panic simply left her rented accommodation. She's now homeless. The other a 'working' man in his thirties, who had struggled with depression took his own life, leaving behind a heartbroken young family.

There are many similar tragic stories which involve people whose disabilities are not evident to the eye, but for whom the struggle to manage their lives is equally, if different, to cope with than people with a physical illness.  It's also important to remind each other that the mind and body are connected, and in for many individuals with a physical illness or disability, mental health difficulties become something else they have to manage;  instances of depression rate highly, especially in the elderly and recently disabled.

Let's wear our Spartacus ribbons with pride and as a movement united in smashing prejudice, and continuing to prove that 'disabled' does not mean 'disenfranchised'.

As mental health campaigner Shaun Johnson said last night: 

" I missed the bit in the film 'Spartacus' where someone says "I'm more Spartacus than he is!" and then they all have a punch-up about who is the most Spartacus whilst the Romans carry on crucifying people...."

Dawn Willis


@marilf000 said...

Excellent! xx

Annieb said...

For gods sake we must resist this hierarchy of disability at all cost, if you are I'll and disabled by it youre more likely to be depressed as well, together we are strong, resist the divide and rule attempts, we are all in it together


Nicky Clark said...

Excellent post also don't forget us non-disabled disability campaigners. many parent carers get a negative reaction based on oppressive experiences of over bearing smothering parents. The responsible reform retweeting was assisted by many non-disabled carers who are just as passionate on the issues. Standing together is so crucial. With a hope that authentic voices mustn't encourage militancy as there is room for all of us together strengthening the movement. As with all civil rights issues it is the affected and unaffected working as one which makes the largest strides. All love Nik x

Anonymous said...

Great piece of writing. So true, united we stand divided we fall. Never has this had more meaning.


Anonymous said...

Well said. I have both a physical disability and a serious mental health illness. Because I am not in a wheel chair I sometimes feel that I am considered not 'disabled enough'. The general public tend to discount my mental health and focus on my physical issues when I, as the one living with them,see the severity of their impact on my life as the other way around.

sad times said...

This blog does not surprise me at all it seems Government and media are hell bent on setting one up against the other, when the majority of the public are in it together but it is just not transparent yet? So standing united is difficult with all peducies and media etc. It seems the elite are totally out of touch or care.
What do we do? Get our voices heard and believed!
The blogs are one way, so Thank you!

betsybounce said...

i'm so very glad you've written this. in 1995 i saw a piece of graffiti on the berlin wall which seems appropriate.

on a black background, covered with white handprints were the words... many small people, in many small places, doing many small things ... can change the world

i'll stand by you


Alan Bruce said...

Well said Kaliya...

misspiggy said...

Great piece. I don't know what can be done to make disability charities more centred around the concerns of people with disabilities. The only experience I have to share is that, working for a big charity, I was regularly challenged by people with disabilities who worked as independent experts in our field because I wasn't disabled. When my hidden disability was finally diagnosed and it became public that I was personally affected by disability, the criticisms stopped and working relationships became much more positive. All along I was saying the same things and representing the same organisation.

I don't know whether this is a useful example or not, but there are real difficulties in working together when people are not able to trust each other for whatever reason. Fears and prejudices can exist in all quarters.

I do think disability organisations and other agencies working on disability should hold themselves accountable to grassroots disability campaigners, and I would like to see more disability charities having monitoring panels of such people. In fact, do any of them?

Rickys mum Michelle said...

Brilliantly said and just what our community needs to hear right now. We can't waste time arguing amongst ourselves. Don't judge others and treat all with the respect that you expect.

Claire said...

Thanks for writing this piece, Kali and Dawn. It's really important we don't fall into the divisive trap being left for us. Thankfully, we're wise to it, and have learned lessons from the civil rights movements before us.

Just as an aside, although my physical disability and fatigue make life very difficult presently, this difficulty doesn't impact on my life to the same degree as periods of serious mental distress I've experienced. Sometimes, a barrier needs more than a ramp for us to overcome it.

Anonymous said...

I find it a bit embarrassing when I meet people who have had their benefits removed, care removed, or when they receive less than me.

One person was particularly 'offish' with me because her husband only receives the low rate for mobility, and I receive the high rate. I could have cried. He's in the garden regularly working away, he's retired but does all sorts of work for people, he catches the bus to town nearly every day, walking all over the town; he doesn't even need a walking stick.

I can barely walk to my next door neighbour's now. It's a slow and very uncomfortable process. I cannot use public transport as I couldn't stand up waiting at bus stops, and the 'giggling' about on the bus makes me very ill, so I need taxis everywhere. If I go to town, I need a wheelchair and a carer to push it. I am largely housebound.

I cannot understand why people who are slightly disabled resent the amount of support I receive, both when I was in work and now that I cannot work. When I was in work, even friends said that they thought it was unfair that I had my transport paid for through 'Access to Work'. I also had 'tellings off' from taxi drivers about it. People also thought that I shouldn't receive any more money than my colleagues at work (ie. DLA). Now of course, some think that I should be on a subsistence income, and not entitled to any more than JSA levels.

In contrast, an acquaintance who I rarely ever see now, broke down crying in the doctors. She has multiple serious health problems, and they had just put her on morphine. At the same time, her disability benefits have been removed, such that she has £12 a week now to live on, and is only surviving by the generosity of her friends.

So, I started texting her again to offer support, one disabled person to another. She refused help from me a few years ago; I wasn't offended because I understand how people can be too proud to accept help (me included). I have offered her help again this time, and she has accepted. I'm going there on Monday with my laptop, and we're going to start work on her appeal, grants from charities, and getting her an OT assessment as well as a care assessment. She didn't know how to go about all of this.

Rather than her being jealous and petty because I now receive the help I need (for now at least), she was grateful for the support. And, we do all need to support eachother whatever our various circumstances are. We cannot allow a 'divide and rule' attitude to develop between us.

Sorry for the long comment, and thank you for a brilliant article.


Anonymous said...

Just read this on FB spartacussite VERY scary!

OK this stuff is big and i've sat on it for a couple of days now...to start with does anybody remember this guy Mark Britnell and this horrendous comment ?

"The NHS will be shown no mercy" Mark Britnell advisor to David Cameron

He's the infamous advisor and private lobbyist who Cameron said he never knew anything about but had invited to several very high profile meetings about the future of t...he NHS before coming to power- http://politicalscrapbook.net/2011/05/david-cameron-mark-britnell/
A bit more about the chap on wikipedia - http://en.wikipedia.org/wiki/Mark_Britnell

And a further article about him and his connection to Andrew Lansley - http://www.guardian.co.uk/politics/2011/may/14/david-cameron-adviser-health-reform

Well what I am about to show you is a scarey document from a meeting that took place in New York talking about the global privatisation of th NHS... and guess who's one of he key speakers a Mr Mark Britnell..... so much for the NHs changes not being about privatisation as he seems to genuinely think they are........ can someone tell the cabinet then??? - http://www.powerbase.info/images/f/fe/Apax_Healthcare_conference_2010.pdf

The details were found fom here - http://www.spinwatch.org/blogs-mainmenu-29/tamasin-cave-mainmenu-107/5435-the-nhs-will-be-shown-no-mercyq-says-cameron-health-adviser

When i mean global privatisation of the NHS... i mean that the whole of the globe is being "harmonised" to fit within a standardised privatised structure/network......

We all knew about this, we all suspected it but here's the actual information that proves it

I hope you can do something with this informationSee more

Jane Southorn-Elliott said...

I really do not agree with the term "disabled", it fact it is one word that annoys me. There are plenty of "disabled" people that are more active and contributing more than "ablebodied" people. When I was fifteen I had a bone transplant on my foot and was "disabled" for over a year. The responses I got from society was interesting at the time. There were those who would speak to the persom with me and would ask them questions about me or would speak to me sloowwwlllyyy, so I would understand. Then there were the others that would assume I need help and would grab my bags and "help" me without asking if I actually wanted help, which kind people that is actually disrespectful, though I know you think you mean well. Actually, id I did I would have asked. There is so much prejudice against "disabled" people and no, they are not disabled. They have specific needs in order to function and lead fulfilled lives in society. As for benefits, I would not want to see anyone on the streets and I agree "disabled" people are not scroungers. Like any self respecting person they want to work and live indeoendently.