Not for the first time, I woke up today thinking about disability. I will be 68 next birthday, and other than the usual ‘old man’ aches and pains, occasional bad Vertigo, and some eyesight issues, I have managed to escape anything worse so far.
When I was young, Polio was still a common disease. I would see children having to wear metal calipers to brace their legs, and saw documentaries on TV about people who had to spend their entire lives in an ‘Iron Lung’, a cylindrical machine that breathed for them. By the time I was at secondary school, aged 11, I was already counting myself lucky to be fit and healthy.
Many years later, I went to work in the London Ambulance Service, as an EMT. Soon after completing my training, I was shocked to become exposed to disabilities I had never even heard about, let alone seen. I learned about the ‘unseen’ sufferers, those too badly disabled or physically deformed to be able to go outside much, or participate in things that the rest of us simply took for granted. They were sometimes collected in buses, and taken to attend ‘special schools’. Schools that were not only adapted for their needs, but where they could be educated with people who had similar conditions, and understood living with them. Those too disabled to go to those schools might be home-schooled, or have private tutors.
I met young people whose bones were so brittle, they could break them just by coughing. Brain-damaged teenagers fully aware of their situation, but completely unable to communicate at any level whatsoever. One young lady who had been born with undeveloped bones in her arms and legs, so although she was twenty-five years old, she resembled a floppy rag doll, and I could pick her up as easily as I could a pillow. A man with such disfigurement of his facial bones, that he was unable to speak clearly, or eat and drink properly. His elderly mother cared for him, giving him liquid food and drinks through a tube that passed down inside his nose, something he had to keep in permanently. He rarely went out, as he had bad experiences of being mocked in public.
Many I encountered had been born disabled as a result of their mothers taking Thalidomide, for morning sickness. That great drug scandal of the 1950s left so many children without properly formed arms or legs. Or both. Alongside those who had congenital conditions, I also came across scores of people who had become disabled as a result of accidents, or after having to have limbs amputated surgically. They had led outwardly normal lives at one time, until that life was turned upside down by the events of one day, or by contracting a medical condition. Suddenly, they needed help with everyday things, often very embarrassing things to need someone else to do. They had to consider learning to cope with prosthetic limbs, using crutches, or being confined to a wheelchair for the rest of their lives.
This necessitated a re-think about how they lived, and everything they were used to doing. Beds moved downstairs, specially-adapted toilet and bathroom, and restricted access to public buildings, and most forms of transport. The loss of much-loved active hobbies in many cases, and even the break-up of relationships, when partners couldn’t cope, or the disabled person didn’t want to be seen to ‘tie them down’. Before I was 30 years old, I started to get some insight into just how much such things affect peoples’ lives.
Adding to the list were those disabled by Mental Illness, Epilepsy, complications of Diabetes, severe Asthma, Dementia, Arthritis, Blindness, and Deafness.
Most of you will not have worked in a job bringing you into contact with disability on a daily basis. And even those of you who have personal experience of your own disability, or that of a child, sibling, or parent, may well not have ever encountered those with ‘extreme’ disabilities. But over the last 20 years, we have all seen a greatly increased awareness and understanding around the whole issue. The Paralympics, injured soldiers returning from foreign wars, and disabled people working as presenters on TV shows and news programmes; as well as those actively campaigning for better access to buildings and transport.
Attitudes are changing, but there is still a long way to go yet.
What I learned during those 22 years was remarkable. With almost no exceptions, all those people stayed cheerful. Many were in fact much happier than I was, and they coped so admirably with things I could hardly imagine. They had no demands, few requests, and inspired me with their determination to live the best lives they could.