Disabling Disability - a very personal and honest view...
Written by Graham Large - OWB Creative Communications
Ann Johnson, Chief Exec of wavelength (http://www.wave-length.org.uk/) gives a very personal and honest view of her life with a disability. It’s a great article:
Ann Johnson - Founder and MD of Wavelength
A great friend of mine, Ann Johnson, Founder of Wavelength, has taken some time out to review her life since becoming disabled in 2002 and has written a piece here on employers’ attitudes to disability and her general life experiences. It’s a wonderful insight from a wonderful lady a lesson to us all.
I woke up in intensive care June 2002 not able to move my legs as a result of an impact to my spinal cord. Confused, frightened and needing answers I asked for a meeting with a key specialist who after spending a few weeks with stated that ‘you will probably never walk again’ followed by six months residential stay learning to function as a wheelchair user.
Today twelve years on and having regained some significant movement and strength in my legs the specialist was right it has not led to meaningful walking so I have now resided to a life using a wheelchair. Overtime I have adapted my home, social and working life around using modern light weight wheels instead of relying on my legs. There has been much support for me to do this via adaptation grants, Motability and Access to Work. Even my employer at the time took on the project of ramp provision, improved toilet facilities, dedicated parking space and even an electric desk – which interestingly I never used. So you might think that I was well supported by external agencies, my employer and my family but with the benefit of hindsight it is easy to see that much of the above with the exception of the support of my family and friends was that of practical support many fearing away from the emotional strain of the situation.
At work I felt I could not share what I was going through with anyone, I found myself coming back to an office that before had felt so comfortable to work within and which now felt so absolutely alien. Yes much had been spent on equipment but my post required me to attend ‘off site’ meetings with senior directors, attend training and deliver presentations with staff all of which I was not ready for emotionally and avoided regularly with excuses like ‘I am not quite prepared yet’ ‘sorry too busy to attend training or the off-site meeting’ or xxx can attend in my place, but the truth was I did not want pity, to be stared at or to feel inadequate and no-one responded back or discussed it with me. I recall telling my husband that going to an off-site meeting would invariably mean asking the CEO to assist me up and down a curb and for me being someone who had always been so independent I just could not ask for help. My husband responded by saying ‘you need to get over that’ great words of wisdom, words I understood but could not deliver on so instead I locked myself away in the safe environment of my small office, got on with the job and no-one questioned it.
When I saw the chance to leave the organisation several years later I took it not quite sure what to do but would probably link it to my previous human resources experience and go freelance and then whilst sharing the idea with a colleague they said ‘you have so much to share around living, copying and succeeding with a disability people want to hear it’. So I started to reflect and consider the challenges I had faced, along with those of my employers and experiences of those I regularly came into contact with. I began to consider how difficult it can be to ask for help or to give it, to know what to say and what to do in any given situation. It is clear that there is a law around equality and the requirements within it not to discriminate whether directly or indirectly are explained, but my experiences were not about people discriminating or wanting to place barriers but people who either did not see the challenges they presented or just felt uncomfortable approaching the subject or delivering the service. So why not take my career this way, I took myself away reading and questioning aspects of current equality laws, attended workshops and as I am someone who best learns by experiencing I joined ACAS Equality and Diversity Management Team within the West Midlands to understand real life organisational challenges. Then in 2008 scoped out and launched a social enterprise named Wave-length Social Marketing CIC.
The Social Marketing addition being added as this new ‘profit for purpose enterprise would not just offer training, deliver talks or give advice on the law in respect of employing or providing a service to someone with a disability but would also campaign to drive social change with a vision to disable disability in respect of access to employment and services.. Having been in business myself over the years, held the post of Shropshire Chairman of the Federation of Small Businesses for in excess of 12 years and held non-executive roles on large co-operations I felt that I could build an organisation that offered a balanced approach to delivering support on disability one that met the needs of the business and the employee/customer. In fact a talk I did for the Department of Transport in Westminster a few years ago prompted in feedback of ‘thank you for not just beating us up on what we don’t do very well but instead helping us to find solutions’.
Over the years of running Wave-length I have provided support to, worked with and alongside people with varying conditions including physical, learning and mental health many of which can share the emotional difficulties, fears and memories I can describe in my life, most saying that it is the barriers placed by others that disable them not their condition. But I think it goes further than that people wanting to assist someone with a disability also can feel challenged within themselves – the little voice that says should I help? What will they say? Should I just leave them to get on with it? In fact a very strange encounter for me recently took this to another level.
I had gone into a café ordered myself a coffee and by resting the coffee in part on my bag perfectly placed on my lap I managed to get to the table and enjoy my drink. As I went to leave a man gestured me over to him where he said to me ‘you have made me feel very uncomfortable this afternoon, you went passed me earlier awkwardly carrying your coffee and I did not know whether to offer you help or not and in the end chose not to but spent the next half hour questioning my behaviour especially as I thought you noticed me looking over and was annoyed with me not offering assistance’. Blimey! I had not even noticed him but had inadvertently created such an impact, I simply said ‘perhaps you could have simply asked me if you had felt such an urge to offer help and I would have then politely told you whether I needed assistance or not’ and wished him a good day. But recalling this recent event it reminded me of another incident where I had arrived at a multi conference venue having been asked to present at a conference for the retail industry to talk about how customer service might be improved. Given the audience it was quite ironic that on arrival I was greeted by a very friendly receptionist who before I had had the opportunity to speak said ‘Good morning are you here for the Arthritic Society Conference’ ‘no’ I then stated to a woman who then appeared to have lost some colour in her face and had become much less confident, she did then apologise and asked me the purpose of my visit. I had assumed that she was not actively second guessing everyone coming into the venue but had inadvertently stereotyped me. I spoke later with the manager of the centre and shared this experience and he was horrified and responded with ‘this is shocking all staff have been trained on the law this should not have happened’ but my response to him was this situation was not about understanding a law it was simply about customer engagement and specifically feeling comfortable around someone with a disability the receptionist needed to be supported.
So we have now developed at Wavelength an organisation that hits that direct area working with staff managers, customer facing staff and policy makers about how to do just that combining the law, best practice the barriers to achieving it and how they can be overcome. Taking our experiences of many disabilities, situations and sector related case studies to the training room and it works it helps people see the challenges faced by both the person in front of them, those within themselves and how to develop pro-active and not re-active ways to manage it. As a result people are able to better plan activity, manage expectation and feel confident in offering the right support on the day. Something in those early days that might have helped me to speak about the way I felt about work, as a result being more productive and staying with the organisation perhaps. The later feeling strange to me now for as I look back over the last twelve years, the people I have met, the organisations across the UK we have provided training/support to, the places I have visited and the positive campaigns we have led on I am not sure I would have changed a thing. In additions we have developed a social enterprise that has been able to use training profits to help other people with disabilities feeling the despair I had felt back in 2002 to understand that life can be different and opportunities are out there for them.
Yes personally it can still be very difficult, challenging and poor attitudes of service providers can still deeply hurt me at times but in balance I have a life now that possesses more variety and value than I could have ever imagined. If only I could have been able to tell my frightened self that in 2002.