Disabilities Awareness Month: Learning from disability

Disability History Month: learning from disability

By Service Designer, Chris Jerram, Neos Networks

I volunteered to write something for Disability History Month, because I happen to live with someone who is disabled, but when I started to write something down, I struggled to put my ideas in to print, so I asked myself what exactly is it I want to say? I realised that what I wanted to get across was not so much around my experience of caring for my son (because unless you live through it you would never really begin to understand) but more about what I have learned from him, and others like him. So here goes.

When my son Noah was about 1, it became apparent that he wasn’t developing as expected. Something called ‘global development delay’ was diagnosed. A fairly meaningless ‘catch all’ to be honest that covers a whole host of things.

Over the years he has learned to walk, albeit poorly, but not to speak or develop any cognitive or motor abilities beyond that of a 1-year-old.

At about 7, his seizures began, mild at first and despite a complex drug regime, over the years becoming more aggressive. The seizures soon came more frequently and eventually became impossible to stop without being intubated in hospital. Too many emergency hospital admissions to count, by land and air (great views of Salisbury Cathedral by the way, should you ever find yourself in a helicopter going that way). Months spent in ICU and on the Neuro Ward at Southampton Hospital.

During one of these admissions, it was discovered that a defective gene in his brain was the cause of his profound learning difficulties and his complex epilepsy.

He underwent surgery in Southampton to fit a VNS in his chest and neck (a device that detects and can prevent seizures) but this has unfortunately proved ineffective, and then earlier this year, following a major seizure, he once again found himself in Southampton Hospital – but this time it proved impossible to stop. As a last resort he was air-lifted to Bristol Royal Children’s Hospital for an emergency Corpus Callosotomy which is an operation to separate the two hemispheres of the brain in order to control the most dangerous of the seizures.

For now, the seizures are under control and less frequent, but only time will tell whether this operation will be effective in preventing these major events. Noah is now 13 and left with a diagnosis of profound and multiple learning disabilities and complex epilepsy.

The reason for this short bio of Noah’s condition is not to elicit sympathy or as a way of unburdening myself in some way. It is simply this…

Over the last 12 years we have spent many months in hospitals and hospices and have to come to know and consider those we spend time with as friends, individuals and their carers alike. We have become friends with Noah’s class mates and their families from the special needs school he attends when he can. We have seen the devastation that disabilities with their associated illnesses cause, and there is no doubt they do cause tremendous heartache and pain for the individuals involved and their families.

But I have also seen examples of the human spirit you are unlikely to find elsewhere. People living with the most extraordinary complex and life limiting conditions. People who are unable to walk, to see, to hear, to understand. People who experience daily pain and distress. People who will never be able to enjoy some of the most basic pleasures in life. People who experience ridicule (yes this still happens in 2021) and people whose lives will be inevitably cut short.

These same people display the highest attainments of the human condition.

Despite the most enormous difficulties that they face, despite the pain and anguish they deal with each and every day, these same people demonstrate a courage, a strength, a kindness, a compassion and a contentment you would rarely find elsewhere. They smile and laugh and take pleasure in the things that they can. They can teach us so much if only we would stop to listen.

As for Noah, every day I learn something from this superman of a child; his innocence and his strength, his ability to overcome whatever life throws his way, his ability to take pleasure from the simplest of things and his fight to remain in this world.

We should and must show compassion, kindness and understanding. But above all we must take the time to listen and observe. They have so much to teach us, and we have so much to gain from them. They are our teachers to help us learn the most important life skills of all.