Disabling Disability – a very personal and honest view…

By 14th March 2014News

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.
Ann Johnson, MD and Founder
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
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
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.  
Visit Wavelength for further information.