My do-do list!

Years ago when I began delivering training I followed the methods of the day, giving participants lists of do/don’t say words in a session on correct language. Sadly, when doing a piece of research on respectful language, I found out learners felt confused by this. On other awareness training, I have myself been confused by ‘don’t say’ lists which left me fearful of having conversations about racism, classism or homophobia.  In many conversations recently, some non-disabled people have also said to me that they feel they can’t talk about disability because they don’t experience it. I do not experience racism, but I believe I’m part of the problem if I can’t articulate it adequately.

So this is my ‘do-do’ list, an attempt to respond to the comment "what can I say?!”

 

 

 

 

 

·      Do talk about the size of disabled population, stressing vast numbers, huge inequality, lack of visibility and wide variation. This helps contradict the assumption that disabled individuals are few and a separate group to those individuals facing sexism, racism, homophobia, religious intolerance, family and partners choices.

 

·      Do highlight the disadvantage and inequality imposed on disabled people. Articulate identity separately, because respecting choice in no way stops us from talking about discrimination.

 

·      Do make the assumption that to be visible at all most disabled people have no-doubt overcome huge barriers, simply to achieve life goals many others can take for granted. 

 

·      Do refer to D/deaf and Disabled People’s Organisations as the go-to for representation. Individual experience is the first step, but D/deaf and Disabled People’s Organisations offer a shared voice that adds activism and community interests to accountable storytelling.

 

·      Do refer to the societal and environmental aspects of disability discrimination in exactly the same way as you would frame a conversation about anti-racism or anti-sexism.

 

·      Do state clearly that organisational culture, and more broadly society, denies many individuals their human right to belong, which is a cost to communities.

 

·      Do ask about identity, if and when a professional relationship has been established. Disabled individuals will have different words for their experience, knowledge and wisdom on these issues. As do feminists, for example. Allow for this choice and respect personal boundaries. Illness, impairment and difference, contrary to society’s storytelling, are private matters.

 

 

 

Read more - Legitimacy, accountability and human rights 

 

Stories, storytelling and storytellers...

I am lucky enough to have a friend who can spin a proper yarn. Her phone calls transport me, to different lands with exotic players... who knew the world of education could be so enthralling. I hope I am a rewarding audience, I to gasp or giggle in all the right places. The performance is a shared experience, the tale weaved between us. I never think to question the truth of the words, within them our reality is created. A joy and a pleasure.  To miss quote Robison, without me she wouldn’t be a storyteller - just a woman speaking into the void.

 

I often think the legacy of scientific research is a belief in one truth. I am thankful the social sciences have offered us a plural. I hope we’ve all had the joy of learning things that tilt our private worlds on their axis. With implications falling like dominos in fluid sequential movement – rarely tbh. 

 

My such moment was being told the story of the Disabled people’s movement, its storytellers and its truths.  The Social Model was presented as a truth, one was new to me, part of an alternative vision. Since then I’ve discovered a world full of tellers with stories of equally compelling landscapes. All have a shared perspective, a direction, of a redefined world. One I’d complacently never questioned.  

 

The story about the Social Model was so powerful it was hard to ever speak of disability without thinking of the pioneers. In a day I’d jumped from 6 to 9 never then able to see one without the other. It didn't erase other stories or tellings, but sometimes spoke a truth to my own experience. Unfortunately, while in my heart I still felt I am a problem having impairments, now occasionally if I concentrate I can think myself free of the oppression Disabled people face – the Medical Model. Every tale that speaks to the prejudice, institutional discrimination and global inequality - reinforces the truth of my story in any number of small ways.

 

Why do I slip back in times of stress, fatigue or difficulty? Well unfortunately tales about disabled people - in society’s stories - are far more available and plentiful which makes them difficult ignore or contradict. As Saint or Sinner the presentation of disabled people is polarised. Therefore, it requires a lot of effort to stand against the weight of common assumptions. That is because unthinking is much like driving a cross-wired car, turning left to go right only works while you are vigilant. The minute you rely on instinct - driven by bias - you are off the road or in oncoming traffic. CRASH!

 

Unthinking is far harder than going along with an existing storyline. Across many cultures, in tales disabled people are described as costly and/or deficient. These myths are woven into everyday stories, so deeply they are barely noticeable. And while many people have come to believe that these tales need serious contradiction, more subtly Disabled people themselves are treated as unreliable tellers. This maybe because our experience seems too unusual, it jars with the shared story. The alternatives Disabled people put in words chimes against the assumptions told about us. So like the car we crash against both truth and teller. Recent personal examples:

◦            I told a friend I lived in West Yorkshire - "... it doesn't exist" he said.

◦            I answered my mum’s name was Caroline - the woman asking said "no it’s Claire".

I could go on... and I’m not denying I talk utter rubbish on occasion. But you’d be surprised how many times a week people correct me purely because my truth doesn’t chime with theirs. It’s a six they cry, in the face my truth - if not indisputable knowledge. I particularly like the wagging finger that goes with "if you lot had done your activism properly!!” or the "if you could agree with each other”. Yes, because Martin Luther King Jr’s dream took a decade to achieve and all feminists have one definition of sexism!!!!

 

In own research I felt I had to present the literature chapter as an analysis because in matters of human rights the stories I read appeared distorted. More widely I feel Disabled people haven’t been trusted as storytellers - even on matters of disability. One week I read 800 papers I had found by typing ‘disability’, ‘disabled people’ or ‘people with disabilities’ in the search criteria. Only about 2% even alluded to a political strength, a theoretical view, or the  interests of Disabled people as a group - a shared voice. I was actually shocked how much was written about disability without legitimacy - as above, clearly West Yorkshire doesn't exist.

To pee or not to pee?

So today is a new low!!!

I’ve been visiting a building for 6 years now, and last week I arrived to find the accessible parking bays taken up by badge-less cars and the accessible toilets locked. It could be that the disabled people using the bays had forgotten their badges,  if so my anger is mis-placed, my apology. However, having nearly wet myself trying to get to the loo, my anguish has been replaced by anger - it is fuming, white-hot, sheer venomous rage. As I've had to put things I felt were more important on hold.  Despite this I wrote a simple email to the building’s management. It went like this: 

I am pretty sure that it was never your wish to embarrass or shame me. however, your application of policy with regard to access has caused both pain and humiliation.  I’ve been a disability equality specialist for 20 years, and I’m getting fed up with stupid policies that in no way support disabled people’s access to typical not preferential treatment.

I arrived to chair a board meeting and AGM last Friday. Firstly, I could not park in the accessible bays, marked with the wheelchair symbol. Because these were taken up by drivers who had no blue badge.  Luckily I found a space 200 yards down the road, sadly, because walking causes me pain, the extra walk was excruciating. So imagine how frustrated I felt when I finally got to the office AND COULD NOT PEE!!! I’m still deeply ashamed that I nearly wet myself, trying to get into the ladies. I’m not sure about parking, but surely having a pee is a human right!!!! 

I am sure that you are policy compliant. Your practice, however, does not deliver on the reasonable adjustments a disabled person might need to receive a typical experience. PLEASE, adjust your practice, or explain to our board why you refuse to treat me with dignity.

                                                    [names omitted to protect the guilty]

I really am so sick of these petty fights, we have bigger problems surely???? I was further enraged by the explanation that the accessible loos had been locked because other tenants had blocked them with ‘excrement’. Really! Really?? So I am to be penalised because of other people’s ***y ignorance. This is bollocks!?!!  It is doubly unacceptable, because the behaviour that is offensive is the complete disregard of the rights of us all to pee... it's unjust, in particular to those who need quick and barrier-free access to relief.

I have been a campaigner, disability equality consultant and human rights activist for too many years. But I feel the climat has become incredibly toxic recently. As a pragmatist I do not expect the systemic and societal behemoths to move fast in making the world less excruciating for those suffering. Is a little kindness too much to ask for? I despair! If we cannot rely on free access, how are we going to solve matters of deeply entrenched inequality, such as employment, education, housing, leisure and law??? 

I found this very useful food for thought:
https://doi.org/10.1080/09687599.2017.1401527
highlights:

• Disabled people in the United Kingdom face many problems. These include abusive or negligent treatment in services which are meant to support them.
  
• Policy-makers often know that these things are wrong. They do not know
  how to change the way people do things, so that policies are followed.
  
• This article looks at a way of understanding what is going wrong, by thinking about theories of social practice. These ideas help us to see the bigger picture, not just the ‘bad practice’ of individuals.
  
• We give some examples of how social practice theories can help us understand the way a person might get support to go shopping, and also the experiences of disabled students in universities.