Monday, June 14, 2021

Using my Disability to create a positive narrative


 

As someone with a disability or two, I am able to lead a full and fulfilling life.  My disability does not define me, own me, hinder me or scare me.  It presents me with challenges and I problem-solve daily to work around them; disabled people are awesome problem solvers as we have to do this every day.  I do not want to be treated any different, I do not ask for special favours or treatment, all I ask you is that you respect the need to work a little bit differently with me to achieve the same outcome that you would with a person without a disability. 
 
As Chair of the Disability Network in a large Acute Hospital, working alongside Minority Ethnic Network and LGBTQ plus colleagues I have reflected on the events of the last week.  If you asked all of us what the aims of our members are top of the list would be “equality”.  In the eyes of this disabled man equality is not an evangelical crusade against everything that is available to people who are without a disability but all I ask is recognition that I am a fully functional human being who can add value to those around me.  
 

Our task is simple, to start the long journey that changes the culture in a workplace that will understand our challenges.  I grew up with the standard teenage insult was to call fellow schoolboys “Spastic” or “Joey Deacon” the latter a reference to the author and TV personality of the same name who had cerebral palsy.  Whilst this was seen as harmless “banter” by teenage boys the effect on people with a disability hearing these words are devasting and cause of angst.  I am glad to see that the use of these phrases has all but disappeared in wider society.  

 
As we have seen in the past few days the culture that surrounds us has a long way to go to meet my aim of equality.  Social media comments from English male cricketers about women and the LGBTQ plus community, booing footballers taking a stand against racism have hit the headlines.  The comments that “oh things are so politically correct these days” in my experience are forwarded by white middle-aged men, though not exclusively, who have never had to run away from people wanting to harm you physically and mentally because you are gay, black or disabled.  In simple terms they are bullies.  These are the minority in UK society, isolated in the enclaves of their own insecurity.  Their views will not be changed by us as a community being evangelical about our wishes for equality and recognition, they may be changed if their beliefs become isolated and ignored.   We as a group need to welcome all.  Evangelical and over-zealous behaviour from our disabled network will only see us become isolated as those we seek to influence and address their cultural attitudes feel threatened by an over-zealous approach to our aims and approach.  This would counter our objectives and undermine our principles that everyone is equal, disabled or not. 
 
Thirty years ago it was ok to go to the pub, drink five pints and drive, now society frowns upon such behaviour.  Society is already ethically and morally policing the Misogyny, Homophobia, Racism, Disability discrimination that exists.  As campaigners we would be naïve to think that these views will disappear, however as younger generations replace the views of bigots, racists and homo and transphobes equality, recognition can be achieved.  People have held these negative views for years to expect them overnight to change these entrenched views because they do not agree with ours is doomed to fail.  All we can do is offer an alternative belief narrative that we are open to discuss our concerns rather than creating our own island whereby we become captives of our own fear.  
 
One last thought for those who will throw back at our campaign I am entitled to free speech, yes you are, you are entitled to your thoughts and no one is taking those away that right.  However, your right does not extend to hurting others.   We all came to this earth equally, and we will leave it as equals, we were not placed on this earth to suffer at the hands or actions of others.  We can play our part let us work with others so they can play theirs. 
 

 

Wednesday, May 19, 2021

16 years Cancer free - This year is different.

 


Devon - Home 
 

















Each year on the 19th of May I consider myself fortunate to have been another year on from Cancer.  It was 16 years ago today that my life changed with my cancer diagnosis that set in train 5 months of treatment and a lifetime challenge of physical and an unseen disability. 

As readers of the blog are aware there were life-changing side effects to my cancer treatment.   My hearing loss and restricted use of my left arm, neck and shoulder still make life a little more challenging than before but great for problem-solving.  

This year a new side effect came onto the scene in the form of osteoradionecrosis.  Osteoradionecrosis is a rare but late effect of radiotherapy. Radiotherapy caused changes to the jawbone, it zaps healthy blood cells and kills them this led to tissue supporting those teeth in the area zapped dying and as a result, teeth in essence falling out.  This year I had 2 extractions on my left side.  This year eating has become a challenge as you default mainly to the opposite side of your jaw to chew and eat.  It was going to happen eventually but another side effect of radiotherapy. 

The approach of my treatment milestones was often tinged with anxiety, but not this year.  My return to nursing has made me reflect on what is important in life and also refocussed my mind on being grateful for still be alive 16 years later.  The passing of my sister from Covid, my main supporter when going through cancer has meant that my focus has been on the living, the future and not looking back. 

#Keepattacking