Dear Readers, if there should happen to be any of you left, once again I apologise for the lack of posts in recent weeks. For the moment, my need to sleep is greater than my need to write. Well, this is generally true. Fortunately, this morning at least, my need to write is greater than my need to sleep. This is somewhat concerning given I have an appointment at 9 am. (All attempts to request extra consideration within the unbending appointments system have gone unnoticed, so I continue to have to make my best superhero(ine) effort to make it anyway.

Maddalena

Talking of heroines, I’d like to draw your attention to the latest little fighter to make the headlines, a baby girl called Maddalena, born at 23 weeks weighing less than a pound. There are several things unusual about this mites story. Firstly,  that she was born at 23 weeks. This is significant given that threshold at which life is considered to be viable is 24 weeks, but this one was born at 23 wks and two days. When babies are this early and this small, every day counts, which is why being 5 days short of 24 weeks is worth reiterating. The second unusual thing about this story is that Maddalena ‘s story was introduced as a miracle of miracles, not only was she born at 23 weeks, and therefore considered ‘unviable’, but she was saved by a pair of scissors. At first this was puzzling, but it transpired, that a pair of scissors were found in the bag which contained the infants tiny body, so ‘experts’ thought she weighed more than she did. Apparently, according to the way this was reported, she owes her survival to this otherwise insignificant detail. Had the pair of scissors not been there, once again her life would not have been considered viable, as she would not have been considered able to survive and, more importantly, to support life, and a quality of life which would make the thousands spent on her medical care deemed to be a worthwhile expense. In these days of the NHS  having to justify every penny spent on patient care, (while wasting thousands of pounds in beurocracy!) this added weight is what gave her a chance at life, as presumably, doctors thought that if she was surviving at less than a pound, not including the weight of the scissors, she obviously is surviving for now, and is being given a chance.

Forgive me for bringing up the ‘religious’ thing once again, but in my opinion, no detail in this little ones life is insignificant, or unnoticed by her Heavenly Father, and her life was no accident, or mistake, whether her survival is considered viable or not. It is clear, at least to me, that God has a purpose for this little one, for it is He who is giving Maddalena her every breath, and He can use anything to thwart the expectations of the medical profession, even a pair of scissors. It seems for the moment, at least in what has been broadcast  that Maddalena does not have a disability as yet, unusual in one so small. However, as with all premature babies, her survival is still precarious, and due to her weight and how under-developed her immune system will be, her life could be wiped out by something as simple as a cold. For now, however, she survives. I intend to follow her progress.

Disabled people, discrimination, and the Paralympics

On the same day as this little child was born, there  are others fighting for their very survival. In a world where achievements such as the ability to find, and maintain a job, and indeed to be able to search for a job in the first place, and therefore not sponge off the state, is paramount, disabled people continue to fight. We are fighting for many different reasons. As in the case of Madelina, we are figthing to prove to prove our lives are ‘viable’ and have meaning and purpose, despite some in society, including, it seems, the majority of the goverment would seek to place on us.

As I suspected, the Paralympics have been judged to have had no lasting impact on the way ‘odinary’ disabled people living ordinary lives are viewed and treated by society at large. It seems the ‘Superhero’ label is all too relevant. Achieve heroic things, and you are considered an inspiration, and your life is considered worthwhile, for you are making a contribution to society by inspiring the rest of the nation to consider themselves lucky, amongst other things. It may be that view of disabled people in sport, and disabled people’s sport has changed, but as I suggested in a previous post some months ago, Lord Seb Coe was too quick to say attitudes towards disabled people had changed in any meaningful way. As is stated in the news item, According to this latest survey from Disability Charity ‘Scope’,

• 53% said they still regularly experience discrimination
• 67% said that the Paralympics have done nothing to improve the way they are spoken to

A high profile figure has come out in support of the survey, The Director of Public Prosecutions Keir Starmer QC has said in the article it is his “hope that [the Parlympics] has enhanced our understanding of people with disabilities, my fear is that the surveys continue to show a high level of abuse.”

While I applaud his courage in furthering the cause of little known “Disability Hate Crime” for some of us the fight is even more basic than this. Some of us are fighting for our survival  and the right to a basic income, food, heat, an (accessible) roof over our heads, for those who are able, meaningful work, to allow independent means of obtaining these things.

There are so many arguments it is difficult to keep track of them all. However, one of the arguments I have heard that shows a lack of basic understanding, (and an attitude that stinks to the Heavens) is that why should the taxpayer be funding disabled people to stay in their beds all day when others have to go out and work to obtain the same things others get for free. I have said from the beginning that in some ways I wish to distance myself from activism as we are only in part fighting for the same things. I do not wish to associate myself with much of the propaganda constantly churned out through social media, and consider the current fight regarding #ESA to be somewhat irrelevant considering that this will be dispensed with in a matter of months. For me, ‘Universal Credit’ is the more important fight, as there are rumours that the ‘premiums’ on which I depend will be wiped out. For now, this is but a rumour. Nothing is certain for now, although I fear the ‘devil (will be) in the detail’. For now, we survive, and fight on!