Thinking Aloud On a Sunday

~ beetleypete

Disability.

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.

51 thoughts on “Thinking Aloud On a Sunday”

  2. Thank you for mentioning this, Pete! You really did a very good job. Till now i never had been confronte with so many persons coping with disabilities. What the UN forces with the term “inclusion”, was not fully done yet, here in Germany. I already consider it very important that we live together every day with or without disabilities as far as possible. Especially in Germany, where the greatest crimes against disabled people had been committed in the past. Michael

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  3. When my mother was in college in the 40’s her roommate’s disabled brother was kept in a dark room at the back of the house. I guess that was common at the time. Many people were sent off to institutions where they languished. I was glad that by the time I had awful nausea with my pregnancy that thalidomide was no longer prescribed. I would have taken it as did so many women.

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  4. Although I wore a caliper with childhood polio, no situation then was so daunting and so chilling and lonely as visiting my husband on the 8th floor of the QEQM hospital in Paddington a few weeks ago. Just after he had undergone some serious surgery.
    Full of apprehension about how things had gone for him, I was approaching the entrance when an ambulance pulled up, and instantly Pete, you flashed into mind. This would probably have been on your beat and familiar to you. It was like a friend had just walked beside me. A great lift and courage came across. Thank you Pete, will never forget that moment.
    Husband is recovering well.

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    1. Thanks very much for that, Patricia. I am very pleased to hear that your husband is doing well.
      Yes, I spent an inordinate amount of time in and out of St Mary’s in Paddington. (QEQM is the name of that part of the building, not the hospital) I was up and down the ramp to the first floor A&E Dept more times than I care to remember. 🙂
      Best wishes to you, and my hope for a full recovery soon for your husband.
      Pete.

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      1. Thank you Pete for your good wishes. Meant to add QEQM hosp *building*. Was a volunteer for some years in the old St Mary’s building, but no amount of hospital familiarity prepares you for when a loved one is seriously ill. Best to you and yours.

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  8. Great post 🙂 I too have met a lot of people with disabilities and it is truly testament to them that they are able to remain upbeat. I do not know If I would be as successful as they are at that. As for you Pete, as long as you do not get diagnosed with anything really dramatic, than I think you are going to be perfectly fine. Of course nobody knows what the future holds and I am by no means your doctor. Anyway, keep up the great work as always 🙂

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  13. I watched my sister cope with crippling back pain and then the removal of a kidney and both adrenal glands. On the outside she looked fine which made it hard for people to understand what she went through during her 11 year battle. But she always considered herself one of the lucky ones. You would think when seeing someone with an obvious disability, it would spark feelings of compassion. But when our own president openly mocks those disabilities, it seems to normalize the behavior for some. We still have a long way to go. Very thoughtful post, Pete. (One of the things I loved about ‘Call the Midwife’ was the focus on the history of women’s obstetric care which covered the use of Thalidomide.)

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  14. I worked at Stoke Mandeville for a couple of years, so have seen the lot there, then a couple of years at Stanmore RNOH where they did amazing reconstructive or remedial work for those born with deformities, very humbling to see what people go through, and how resilient they can be.

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    1. Well SMH and RNO would certainly have shown you pretty much anything. I recall collecting patients from The Royal Hospital For Incurables, in Putney. That was a place where they used to almost ‘shut away’ the seriously deformed and disabled. It has changed its name now. (Wikipedia)

      ‘The Royal Hospital for Incurables (RHI), now known as the Royal Hospital for Neuro-Disability and situated on West Hill, Putney, was founded by Andrew Reed DD exactly 150 years ago. The RHI was thus the pioneer in modern times of long stay institutions for the sick and dying.’

      Best wishes, Pete.

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  16. Well said, Pete. It is true that in this country strides are being made in social awareness and facilities for the disabled, but still a way to go. But in some countries, the disabled are hidden away as if they didn’t exist…so what kind of life for them?

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    1. Very true, Sue. This is an issue that needs international awareness. Perhaps the United Nations should be doing more to publicise it? Unfortunately, I don’t have a great deal of faith in that organisation.
      Best wishes, Pete.

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    1. Thanks, chuq. One of the first things I learned was not to talk to others over the person in a wheelchair, as if they didn’t exist. That came with “Talk to the person, not the chair” too.
      Best wishes, Pete.

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  19. I have always found it amazing how so many people that have a serious illness or disability are able to stay so positive or cheerful. I have no idea if I would be able to stay like that myself, were this ever to happen to me. That said, I think the ones supporting their loved ones going through this or the many people that are working in healthcare are the real heroes. They should deserve all the credits and it’s something that at times is recognised way too little in my opinion. Wonderful post Pete, no question about that😊

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    1. Thanks, Michel. Over here now, too many relatives are expected to bear the full burden of caring for their loved ones affected by all these conditions. Support and financial assistance is often sadly lacking, especially when it affects the very old, who have nobody left to help them. But at least public attitudes are changing gradually, and disabled people can often find themselves better placed in society as a result.
      Best wishes, Pete.

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      1. Well, as I still live with my parents, I know a little something about that. My father especially is currently experiencing a lot of pain each and every day. It’s hard at times, but it doesn’t stop me from trying to help out each day as best I can. My parents have always been there for me, so in return I will always be there for them as well, no matter wait. But yeah, as for the support and financial aid lacking, that is here becoming increasinly more difficult in Holland as well. Luckily as you say, public attitudes are surely changing, and that’s a good thing. Here’s hoping that things will change for the better in the future when it comes to aid😊

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