Help

Introduction

I have been rediscovering John Farnham. Well, I have been doing penance for ignoring him in the 1980s – I was in a different cultural space. His performance of Help in company with the Melbourne Symphony Orchestra 1989 is something special – see https://www.youtube.com/watch?v=dv54giOSRKs

Of course, I know the song as the Beatles original [1965], but as the lyrics say that was when “I was younger, so much younger than today / I never needed anybody’s help in any way.” And now “… those days are gone and I’m not so self assured / Now I find I’ve changed my mind I’ve opened up the doors…”

The personal shift, in acquiring a disability, is profound…and humbling. You go from the illusion of independence to being utterly reliant on other people for your survival in this world. The recovery of some measure of competence was, for me, a slow struggle. I needed help along the way.

Listening to John Farnham, now multiple times, reminded me of that journey. I want here to reflect on disability and the idea of help.

Get out of our way

Before I got hit with GBS in April 2008 my only sense of disability outside the professional sector in which I worked was an assertive and cranky sense of frustrated impatience. I had no sense of connection with those who made such demands back then. I do now.

I recall a publication called Made You Look which featured a woman with a double below amputation [if I recall correctly] holding a skateboard. Back then disability was about getting attention – getting people to take the reality of being a person with disability seriously.

The unspoken message, well it was at least poorly articulated, was that ‘we need your help to make our shared world as accessible to us as it is for you. We are not asking for anything extra or special – just equal opportunity.’

I think now that we have lost that key message of ‘help’, buried it in blather. My favourite inclusive podcast is Melinda Briana Epler’s Leading with Empathy & Allyship. The essence, the heart, of Melinda’s show is that the excluded need help to be included. We can’t do it on our own. It’s a partnership, a collaboration, an alliance.

Exclusion is structural in physical, cultural, and psychological dimensions. It is not, and was not, inadvertent. It was intentional and part of the foundational philosophy of our culture. The Old Testament says, in Book of Deuteronomy: Thou shalt not sacrifice unto the LORD thy God any bullock, or sheep, wherein is blemish, or any evilfavouredness: for that is an abomination unto the LORD thy God. [Deut 1 [1]]. In contrast in 2 Samuel we find:  But in all Israel there was none to be so much praised as Absalom for his beauty: from the sole of his foot even to the crown of his head there was no blemish in him. [Deut 17.1 [1]]

Putting away the blemished is what we did, as a civilisation. We were responding to a religious ideal that was, for centuries, one of the guiding principles of our culture. Things have changed. We have matured morally to the point where we cast off values formed over 3 thousand years ago. But values baked into our culture over such a span do not dissolve so quickly, even under a shower of moral enthusiasm. Change is slow, and we need your help to maintain the momentum. 

Now the message isn’t “Get out of our way.”, but “Please walk with us.”

Asking for help isn’t easy

Way back in the late 1980s I, and a few friends, connected with a woman in a wheelchair [that’s how we saw her]. She was living in an isolated rural property, and we tried to help her, but her reactions progressively put us off. Now I am ashamed of abandoning her, but back then she exhausted our well-intentioned, but maybe inept attempts, to be her friend.  That failure haunted me. What happened to her? I have no idea.

But I learned, I think, from that experience, that asking for help must come from a foundation of understanding that because disability is part of the spectrum of being human it must be a shared experience. We must reach out and you must respond with an embrace. Back then both of us did our parts badly, ineptly. The need for help was there, and so was the desire to help, but we managed to screw things up badly – on both sides.

Reaching out isn’t a signal of weakness, but a desire for mutuality, as is the response. When I was paralysed from the neck down for several months, I lost no sense of my vital humanity. I was complete and full of integrity as a person. That was a fierce determination at the time. I was shocked by my sudden reduction to being little more than a flaccid body with tubes inserted on the outside. Inside I was undiminished – freaked out but determined to go on.

I survived because I got help to breathe, take in nourishment, expel waste, and to begin to recover capacity for coherent action. Later in the Rehab Ward I got help to move in an increasingly effective way.

Help isn’t about can’t, but need and aspiration

We help each other all the time because we want to foster success. Its not about responding to weakness but building on strength. But if the foundation of action begins from weakness [of body], as was my case, reaching out is still an act of strength [of spirit] – albeit at an early stage. For me being able to reach out was literally the product of 4 months of physiotherapy to help move my arms. It took longer to be able to grasp what I was reaching for. 

We humans are naturally communal. We are hardwired to belong, to be included. When that doesn’t happen, it triggers the potential for a trauma reaction.

People with disability can experience such a prevalence of non-responsiveness to their efforts to reach out that they cease to believe they are going to get a response.

When I was chair of the DCJ DEN I once said that we were not “a union of cranky cripples.” In my time as a union delegate often the militant demand for [a genuine] entitlement generated more conflict, wasted more time, and damaged more relationships than any form of relationship other than one based on intentional conflict. We were all pretty inept back then. Even the goodwill that offered was often squandered in a fog of self-righteousness. Struggle can become the fabric of identity and when that struggle fails to rise above anger and conflict the identity is injured and impaired.

My point was that pursuing a single focus on entitlement delayed or denied was counterproductive. The whole purpose of the DEN was to stimulate the desired changes, but that includes reminding the organisation and our colleagues that we were one of them – we belonged. Asking for help is what you do if you belong. Demanding an entitlement is what you do if you don’t feel included or embraced as ‘one of us’. That’s where we needed to find agreement – among ourselves and with our colleagues.

The goodwill toward staff with disability became powerfully evident to me. There was, as there is in every community, a portion that was disinterested, and a smaller portion whose attitudes were bordering on, or were actually inimical.

We needed to harness that goodwill to work on the more complex areas of behavioural, culture, policy, and practice change. Even with all the goodwill in the world, these are still slow evolutionary changes that require attention, commitment, and effort – the Help needed.

Reflecting on asking and offering 

Then there’s – And now my life has changed in oh so many ways / My independenceseems to vanish in the haze / But every now and then I feel so insecure / I know that I just need you like I’ve never done before. This would have been my theme tune in April 2008. But at the time I was incapable of asking for help or music. My need for help was total. It was given with such dedication and determination, thinking about it 15 years on, still triggers a deep sense of gratitude. Mind you, it wasn’t all niceness. There were some instances of contest over attitudes and values along the way.

The contests were caused by both sides – health care management and a fiercely determined patient. There was mutual misunderstanding, although the cause of some contestation was somewhat more serious.

I was greatly interested, then, in observations that sympathetic executives and managers did nothing because they feared offending by engaging staff with disability ineptly. I understand that. I have felt the same thing myself – but quickly overcame it because I also had a disability, and I could dare to inadvertently offend. But that’s not a reflection of a helping culture – asking and giving. Rather it’s the fall-out from a sense of entitlement coming from a place of frustration and exclusion. It’s not a good thing that those who want to help fear saying so, lest they offend.

How can we expect offers of help if the person extending a hand fears it might be bitten. That kind of offer needs the same safe place we need to create to ask freely and fearlessly – from inside the embrace of ‘us’.

Conclusion

People with disability are not victims of their disability. They may see themselves as victims of fate or destiny, though. They may also be victims of a misguided and anachronistic idealism which devalues those who are blemished and champions the unblemished. But this is a long way from the inclusive and supportive sense of community that is hardwired into our psyches, and our brains.

We are recovering from that, progressively restoring the inclusiveness of our sense of community. But it’s a slow business – as overcoming any bad habit is.

The lyrics of Help can be sung only to a friend – to one of ‘us’. There is a song called I Will Help You. The lyrics are pretty sentimental, but they say, in part–  I will stand by you / I will help you through / When you have done all you can do. The last bit is bad in this context, but then it gets seriously saccharine.  Its more about substituting than collaborating – the intent is good, but the insight is wanting.

Maybe that’s the point. We ask for and offer help in a muddled way and the response often fails to interpret what we meant to say. The solution is maybe to collaborate on crafting lyrics to a new song – Work With Us Together [okay awful title, but you get my drift].

Below are the lyrics to the original Beatles song – but do watch John Farnham’s performance, and maybe sing along.

Help, I need somebody

Help, not just anybody

Help, you know I need someone, help

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone, I’m not so self assured

Now I find I’ve changed my mind and opened up the doors

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me

And now my life has changed in oh so many ways

My independence seems to vanish in the haze

But every now and then I feel so insecure

I know that I just need you like I’ve never done before

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone, I’m not so self assured

Now I find I’ve changed my mind and opened up the doors

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me, help me, help me, oh