The Ugly Truth About Disability

August has always been a pretty non-month for me; Nothing much goes on, summer hype is winding down and the I find the month is generally nothing to write home about. But this August was very different. Within the four weeks of August, our family had 3 very, very close family friends in crisis. This month, I became truly aware of what a fine line we all walk down every single day: Between good health and disability, life and death.

E., 62

A single mother, E has worked her entire life and been in good health. Currently working for a human rights organisation, she’s now in the final years of her working life and gearing up to enjoy what retirement has to offer. Three years ago, the doctors found a large benign tumour in her abdomen that needed major surgery to remove. Since the surgery, she has suffered from chronic adhesions (scarring that causes blockages) that leave her in serious pain, needing treatment and multiple hospital stays each year. E., like 1 in 5 of the UK, now has longstanding, limiting disability or illness. She has used up all her sick days and holiday with hospital stays, so now her boss said they have to begin docking her pay. She can’t afford to lose the money, so she’s ignoring doctor’s ordered bed rest and going back to work.

S., 28

Growing up S. spent most of his time at our house, so is like a brother to me. He lives in a seaside town and runs a holidays lettings company there. After work, he and some friends headed to the beach. He jumped into the water from the same spot he had been using for the last 28 years. The same spot everyone uses. But this time, something went wrong. His friends called an ambulance and he was airlifted to a major trauma centre. Surgeons did everything they could but the damage was irreparable. S. would be paralysed from the chest down for the rest of his life. S. is tragically now part of the 30% of the population who will become disabled before the age of 50.

J., 52

J., is a close family friend we have known since before I was born. He worked as a consultant and in his free time was an avid marathon runner, taking part in 3-4 each year. Two years ago, he and his family began noticing odd symptoms. He saw various consultants and after a few weeks of investigations, he received a one, two punch diagnosis: Parkinson’s disease and cancer. His prognosis was terminal. Like 75% of disabled people, J. received more than one diagnosis/impairment. The combined diagnosis meant his decline was rapid. Sadly, last Thursday in a hospice surrounded by his wife and children, he passed away.

Like for E., S., and J., most disability will be acquired at some stage in life. Less than 20% of the disabled population are born with their disability. Each of them is a person with a full, happy life. They have hobbies, passions, dreams. They are relied upon by their partners and families for emotional, physical and/or financial support. But for each one of them, their life has taken a turn that they never expected or could have avoided.

The cold hard truth is that we are all staring down the barrel of a gun. At any moment, our health – or our life – could be taken away from us. Disability can strike anyone, at any time and your life will change beyond what you can imagine. August has been a trying and emotional month for my family, our friends and their families.  So we ask you, for people like me, E, J, S: Stand up for disability rights, while you still can.


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