Sync

Reveal-ations

reveal : Verb: to make (previously unknown or secret information) known to others

Throughout Sync, I’ve been really curious to find out how different people respond to the idea of revelation in relation to disability. How much of our ‘impaired’ selves do we choose to share with others?

Obviously there will be a divide in relation to those of us with hidden impairments and those of us whose impairments are more visible – but perhaps it's not as clear cut as we think.

I can remember running a course for youth workers many years ago and one woman there had only one arm. She absolutely refuted the term ‘disability’ in relation to herself. Equally, I have worked with many people with hidden impairments – some of whom even wore T-shirts relating to their impairment to advertise the fact.

So what makes us jump one way or the other, and in relation to leadership, what are the pros and cons of both – being an ‘outy’ or being an ‘inny’?

Natural State

What does the world make of us when it sees us in our natural state? How are disabled people viewed? We know, often from our own experience, that being ‘different’ can make others frightened or concerned, or can simply mean they ignore us or label us as ignorant or incapable.

Is it any wonder many people choose to minimise or play down their impairment in relation to such responses? Even those who are most know to be ‘out and proud’ may hesitate to tell it like it is. In particular, disabled people who aspire to leadership positions feel they have to ‘play down’ their requirements for fear that the full truth would leave them compromised. In a recent interview with Lady Jane Campbell in the Guardian, she states:

‘I want to be open with the world that next year, or the year after, I'll probably be on a ventilator full-time. That I won't be able to swallow.’ But her openness only goes so far; like most disabled people, she sometimes disguises the true extent of her disability. In the Lords debate, she began by informing the house that "the usual channels" might have to be invoked, and another member finished the speech for her. Such channels have never been allowed before. ‘If I'd made that demand before entry, they might have thought, it's just not worth it.’

To read the whole interview with Jane Campbell http://www.guardian.co.uk/society/2009/jul/11/lady-campbell-disability-peer

Sometimes it's not the actual reactions of others, but our responses to these reactions that cause us to hide:

‘When I was a child with my chest-worn hearing aid, my collection of health issues and eczema all over my face and limbs, I was misheard, misunderstood, spoke 'incorrectly' and 'got it wrong' and because of this, fear was my ruler and in a way it still is’. Sarah Scott, in her Sync statement

In relation to leadership, many of us have a fear of people assuming we’ve got where we are simply ‘because of our disability’ or even, and much worse in many ways, ‘despite it’ and then the waves of pity roll forth.

Role models

The situation is compounded for me when I think of political leaders in the past, like Roosevelt. The lengths that he went to to try and hide the effects on his body of polio must have been exhausting.

‘Franklin Delano Roosevelt was never lifted in public nor was he ever seen in his wheelchair. Rather, when out in public, he always stood, steadied by an aid, was seated in an ordinary chair, or sat in the backseat of his car. The bottoms of his leg braces were painted black, so as to be difficult to distinguish from his socks and shoes, and his pants were made purposely long to cover them up. When he gave a speech, he held firmly onto a podium that was bolted to the stage. He was always seated as close to the podium as possible, and he would "walk" to the podium, with help, … although in a curious toddling manner, hitching up first one leg with the aid of the muscles along the side of his trunk, then placing his weight upon that leg, then using the muscles along his other side, and hitching the other led forward - first one side and then the other . . ." (Gallagher, 1994, p. 65).

One has to wonder if this any different from the approach taken by Gordon Brown, a man who doesn’t hide his history of visual impairment but refuses to talk about the issues it creates, leaving the media, like this in April’s Telegraph, to tittle tattle about his requirements:

‘The Prime Minister's close friends have revealed that he can only see extremely large print and has needed guidance at public events… Mr Brown, who was left blind in one eye after a rugby accident at the age of 16, addressed the problems in an interview when he admitted that he is suffering increasing problems with the other eye… Damian McBride, Mr Brown's chief spin doctor until the reshuffle, is quoted as telling the interviewer: 'His sight isn't very good.' Insiders also revealed that Mr Brown's memos are in huge print and triple spaced while his own handwriting is getting larger. One senior official said: "If I want him to reply to an email, I always make sure it's in at least 36 point." That is five times as large as standard print size…

If we are constantly presented with people ‘in hiding’ does it mean that there is even more pressure on the rest of us to ‘come out’? Do we have a responsibility to others to own our impairments and requirements more publicly to readdress the balance? The idea of role models is often discussed within Sync. Will things only change, as Sync member, Nick J Field describes it, by us ‘becoming more visible and accepted as the norm’.

Jo Hari’s window

This issue of revelation isn’t exclusively ‘ours’ as disabled people. Everyone has to make conscious choices about what one does and doesn’t reveal. There is a leadership tool, JoHari’s window, which is often used within leadership development to support people thinking this one through (see Sync’s Jo Hari’s window article).

One of the interesting things about this model for me is not just the ‘what I choose’ and ‘what I choose not’ to reveal quandrants but also the remaining two – what do others ‘read into their experience of me’ and the unknown quadrant – things that neither I know about myself, nor you know about me’.

I know many disabled people that have found this tool useful. Hard though it is to find out what people think of us, it can be central to developing authentic leadership.

To find out more about Joharis window, click here...

In one of the new Sync case studies, Robert Softley Gale reflects on a moment when he certainly found out more about what people knew about him that he expected:

Robert’s own CV describes him as a wheelchair user with slightly slurred speech and shaky movements. I asked Robert how he thought other people might describe him. Due to a malfunctioning sound system, he did once get the chance to find out. He was performing in Theatre Workshop’s ‘The Threepenny Opera’ and the audio description, usually fed only to those visually impaired audience members with headphones, was being broadcast to the whole auditorium. Robert, waiting in the wings, heard his character described, and then was surprised to hear himself named as the actor portraying the part: ‘And Robert Softley, who moves with very spasticated movements, appears on the stage…’ Distracting as this was, it was nothing compared to the next uttering: ‘Robert, whose mother died in childbirth…’

To go straight to the case study on Robert Softley Gale

You can take control and reap the benefits

There isn’t a ‘right way’ or a ‘wrong way’ to be in relation to impairment, clearly. Each of our life experiences are different, each of our ambitions and desires are different. It comes back to choice. Where we can, we should have choice around disclosing or not disclosing elements of our impairments to others. These should be informed choices based on positive notions, not ones born from the fear that others will interpret our experiences or our requirements in negative ways.

So how do we retain control? How do we control the context? Tony Heaton speaks about taking control simply by ‘getting in first’ and telling people what he needs in a calm, down to earth and practical manner, before people have had a chance to get panicked by what to say. Sarah Pickthall gained great respect from other leaders at a Leadership breakfast event when she patiently outlined how breakfast meetings impact on someone with fatigue and pain issues.

If we are leaders, or aspire to lead, our leadership journey may involve us asking ourselves difficult questions about what we reveal and what we hide.

Jon Adams speaks about leadership being the very thing that lead him out from hiding towards taking a more open position. In his Sync statement he says:

‘I was hidden for so long and if I hadn’t woken up one day and said ‘enough is enough’ and then talked to two people who gave me the nudge, gave me the permission, somehow, to be who I really was. That has to be leadership, surely, someone doing that for someone else, so they can step out?...This new found confidence, with the permission I now have allows me to connect with people through my art, through what I have to share… I think I’m making up for all the years, I didn’t dare talk or speak my mind... Of course your experiences shape your self confidence and self worth and because of that the hiding is about not wanting to come forward and expose yourself, who you really are because it has been so painful, but imagine, if you don’t take that risk and stay stuck in a place where you can’t do your life. I want to give other people permission now….You can choose to feel differently about your experiences’.

Hannah Reynolds, one of Sync coaches, echoes this positive message:

‘It’s a continuous process of un-learning old myths told by others about what is possible and what is not. It’s about changing old stories we tell ourselves that have lost their usefulness for the future we want to achieve. All of that takes time, takes personal courage and the support of others’.

Where are you going?

When we examine ourselves in more detail, we may find we want to share more, just on our terms. Conversely, we may find we share too much too soon and overwhelm people with information they just don’t need (I’ve had to learn the hard way that not everyone needs to know about my holidays, children and chickens).

We can all check out with others what they read into us, but this takes courage and compassion – we may not like everything we hear and it's hard not to become defensive in response.

Finally, we can all be curious about that mystical fourth area – what do I not know about myself? All our journeys should give us time and space to explore and play with new worlds and new thoughts.

Jo Verrent

Sync Project Manager