Disability History Month 2: Something Closer to Home

I recently returned to my Grandad’s memoirs and made an interesting discovery. The building my GP surgery is in used to be a hospital. I discovered that this – the Bristol Homeopathic Hospital – was one of the hospitals my Grandad stayed in as a child. Having moved to the city my Mum grew up in, and her parents always lived in (and continue to do so, in the case of my Gran), I periodically come to identify in real life landmarks and places I’d heard of years before. But there’s not been a coincidence as strong as this sharing of the Homeopathic hospital. Not yet, anyway. (Incidentally, I’d be interested to know if anyone can tell me where the school he mentions near Old Market is, this being my part of town.)

So, it being Disability History Month, I thought I’d share the chapter in which my Grandad relays his experience of the place. The book it’s taken from is a self-published job. After a stroke which had a big impact on his mobility, Ray moved into a nursing home. To keep himself occupied, he decided to learn to use a laptop, and used it to type up some of his earlier experiences. Once he’d got to a suitable point to end a volume, he bought some nicer-than-usual paper to print it on, and sent it off to be comb bound.

The following extract recalls his experience as a TB patient. He was left with one leg shorter than the other for the rest of his life, which gave him a distinctive gait. Other than that gait, the disability – chronic pain associated with the stress placed on the joints by this difference in leg length – was invisible. One example of it’s impact: he was ineligible for front line deployment in WW2, so was in the homeguard (which in Bristol could actually be pretty active, as they staffed some of the anti-aircraft guns during the Bristol Blitz). The events described here took place in the years 1928-32.

I’m considering posting another section some time next year, as I’m not happy with the idea of posting solely extracts about disability, since it may suggest we should be approached solely or primarily through our disability, so I’d like to have a more integrative approach. Anyway, without further ado, here is an extract from “Ray’s Story”:

Chapter 2. Incarceration

It was not that the roof fell in but that slowly the tiles fell off and the hole grew larger! I began to dawdle and walk slowly and with increasing difficulty and it was clear that something was wrong. There were numerous visits to consultants and hospitals and I remember clearly the final prognosis. I was suffering from tuberculosis in my right leg, probably from drinking contaminated milk and the man in the white coat said that if they were unable to treat it I would be dead by my twelfth birthday. When you are aged six, you are not that worried by what might happen when your twelve and I had no great concern about this statement although I clearly must have been impressed because I can still remember the room and the occasion, I have no idea how the hospital system worked but although there was no way my family could afford to pay it was quickly arranged that I should go into hospital. The day before, my Mum arranged a special treat; we went to the Queens cinema to see Al Johnson in The Singing Fool, which was the first of the talking movies.

I spent the next four years in various hospitals, firstly the General Hospital in Prewett Street backing onto the docks, then after six months I was moved to the Homeopathic Hospital in Cotham and after a further year, I was sent home for three months to build up my strength. Then into the big stuff, with twelve months at Winford and a final year at Frenchay. I will not spend too much time with the clinical details but the treatment for my condition was not well developed. Nowadays they would treat the disease with a course of BCG, in my day, they relied on fresh air, good food and rest. The dilemma was that it would need an operation before I was mended and that if they operated too soon my bones would grow out of shape. Hence, I was obliged to stay four years. My first stop at the general was very lonely and I found that being forced to stay in bed with no other six year olds around was very unpleasant. This was made worse by the continual diet of milk puddings. Never a day passed without at least one dish of Rice, Tapioca or Semolina Pudding and often with Porridge on the same day. If you took your time eating, it got cold and lumpy but no matter you still had to eat it. If you refused, then it came out again at the next meal. I fought this battle for months, but eventually I gave in and now I can eat almost anything. The one saving grace about the General was that it was situated in the Docks, and there was a lot to see and hear from outside. This was different at my next stop. This was the Homeopathic, where the view from the window was of a blank stonewall. I ought at this stage to say something about the regime. Breakfast at 8 o clock generally porridge and bread and margarine, lunch at 12 30 p.m. cooked meat, onevegetable and potatoes followed by a milk pudding and tea at 5 o’clock, generally bread, margarine and jam and a piece of cake. Sunday, one might have a piece of fruitcake. Sunday was the only visiting time when two visitors were allowed, between the hours of 2 and 4, No one under the age of 15 were allowed. The doctor’s daily round was in the morning and it was vitally important that every bed was perfectly tidy for thevisit therefore no toys were permitted in the mornings. Although provided you made sure the print did not dirty the sheets, you were allowed one comic. One happening for which I am forever grateful is that I learnt to read at a very early age. I truly believe that had I not been able to read, I could never have stood the life. All small boys need a hero to copy and I was no exception, but instead of my Dad I used Harry Wharton and Flying Officer Biggles. We will talk about them again. Going back to the hospital organisation, there were the doctors who kept themselves apart and never seemed to acknowledge the existence of the patients, the Matron who ran the hospital routine and in my experience was always a cruel sadistic monster who invariably controlled the cleaning and nursing staff with a rod of iron but had absolutely no thought for the patients. This is my answer to anyone who thinks it would be a good idea to bing back the Matron. Then there were the State Register Nursing Sisters who seemed to be the people who looked after you, and the nurses and assistants who did the work. They nursed you, washed you, fed you, made your bed and as far as I can remember cleaned the ward. During the first two years I was supposed to remain in bed since they wanted my leg to be rested and to grow. So, there was an intricate system of weights and pulleys that allowed a weight to continually stretch my leg, it had a large shield over it which kept the weight of the blankets off, but meant one always had cold feet!

Excepting for the patients who were critically ill, visiting was limited to the two hours, 2 to 4 on Sunday, with a maximum of two visitors and no children. My Mum always came; I cannot recall any occasion during the four years when she let me down. She generally brought a bag of sweets, a chocolate bar, a small toy from Woolworths and two comics, one was the Hotspur with the adventures of Biggles and his continual dog-fights with the Red Baron and the other with the latest about Greyfriars School and how the boys in the Remove (what ever that may be), got the better of Billy Bunter and Mr. Squelch. This was the vital part of the visit and I read these comics from the date on page 1 to the name of the publisher on the last page. Even then, they were valuable currency to be exchanged for other goods. It is not surprising how vital this weekly visit was and for which I am deeply grateful.

After two years, I was sent home for three months. By then my family had moved again. We had what was called a garden flat in a very large house in Clifton, where my Mum was acting as housekeeper in lieu of rent. I did not enjoy being home. The hospital had insisted that I was not to use my leg and insisted that I walked with crutches and that I wore a very high boot on my good leg so that my leg could not touch the ground. This is somewhat like present-day criminals who are allowed home with a tag on a leg so that there is continual control. This was also the first occasion that I was able to have a school lesson since I went to hospital. Arrangements were made for me to be picked up by a special school ambulance and taken to the special school near Old Market. This was quite an unusual experience in two completely separate classes were being conducted in one room. I have read since of a class of this type in the D.H. Lawrence book, The Rainbow where Ursula teaches a third of a class. Anyway, there were between thirty and forty of us and we were split into two groups, those on the left being under the age of nine and those over on the right. There were two teachers each with their own blackboard and they both spoke simultaneously to their own side. A most confusing day developed, made even worse by the lessons being pitched at the most backward of the pupils. Mostly it was a case of copying off your blackboard and doing the appropriate sum. I do remember doing the work from both the left and right boards, so without any effective schooling I appeared to be picking up a modicum of experience. Three months soon passes and now on to the big stuff.

My new home was the Orthopaedic Hospital at Winford in the care of a Mr Parry, the surgeon. This was a modern hospital with about eight separate wards out in the country. Years later when Geoff had his accident we had to take him there and I remember when we entered the ward and the sight and smell came back to me, I had a moment of utter panic and I wanted to turn and run out. I was put to bed, but now I was anchored to a board. Imagine a padded board that starts at your neck and follows the outline of a shirt taking in the width of your shoulders, narrows slightly at the waist, then splits into two sections at your bum, and then ends just above your knees. Then imagine six metal bars that clamp you onto this board, holding you at your chest, waist and thigh. There is no doubt this was very uncomfortable and demoralising. My way to overcome it was to play a game. I was Biggles and I had been captured and was being tortured, so it was important that I never showed fear and that I was continually seeking to escape. My escape plan included three times a day grasping each of the metal bars and attempting to pull them apart. I was never able to move them, but what it did do was develop my chest and arm muscles and is the reason why I have always been immensely strong. Regardless of my feeling of deprivation, there was now real progress in my treatment. I had my operation and I was declared free of disease. And I could now go on to the final stage of learning to walk.

Before moving on, it might be interesting to mention a couple of points of interest. My chief memory is of the extreme cold of the wards. I mentioned at the beginning that the treatment was mainly fresh air, windows were always wide open and in the winter it often happened that frost or even snow would lie on the beds. The beds were at least six feet apart, which prevented any private conversations. The highlight of the year was Christmas, when the various wards held a competition for the best decorated ward. I remember my ward took the theme Little Miss Muffett and they created a child size Miss Muffett sitting on a large toadstool. They made a huge web out of black cotton, covering one corner of the ward and hanging close to Miss Muffett, a Black spider about nine inches across. This was fine during the daytime, but think what it was like after lights out when the spider was swaying in the breeze. There was also a Christmas tree. A day wsa set aside when the nurses would come around singing Christmas Carols followed by the consultants judging the best decoration and then presents from the tree. It was not like the parties at home but at least it was special.

Then, late in 1931, I moved to Frenchay Sanatorium. After what I had endured during the previous three years, this was a doddle. I was getting better. I was allowed out of bed. There were no encumbrances. I was allowed clothes and shoes. I learnt to walk again. There were still restrictions but I could see a normal life in front of me. I even went to a school each afternoon. Well, it was a sort of school in the hospital grounds. It was a large wooden hut and following the tradition I found in all of the hospitals, there was the maximum exposure to fresh air. In this case. there were no glass windows, just a space with a slight concessionwhen it rained of a blind being available to pull down. I cannor remember being taught anything. The main object was to keep us busy, so they or rather, she, concentrated on craft work. I used to make wicker baskets, trays, and raffia work baskets. I found this very satisfying and I became quite highly skilled. There were frequent sales of our work at the price of the material and my Mum bought two of the workbaskets and used them throughout her life and I believe she still treasured them when they were old and worn out. I even became friendly with the nurses and onje I particularly liked taught me how to made a bed with real hospital corners. Then during 1932 they decided I was cured and my leg was only half an inch short and I could go home.

The following link to a Science Museum page provides a short explanation of the history of TB treatment. The doll pictured at the top, also shown here, is labelled as having been used to explain polio treatment to young patients, but if you click on the link to a more detailed page about it, it says it was used for TB patients too. The shape of the board and straps on this picture are different to those described above, but you get the idea: http://www.sciencemuseum.org.uk/broughttolife/themes/diseases/polio.aspx

Here are some past and present pictures of Hampton House – the Homeopathic Hospital, now the University of Bristol Student Health Service (the GP surgery), UoB Disability Services, UoB Counselling service, and some local NHS services. There seem to be a lot of ante- and postnatal care there, including lots of midwives’ classes.

A photo of a photo one of the receptionists kindly helped me find! If you look closely, you can see some of the patients in their beds have been moved onto the balconies.

A photo of a photo one of the receptionists kindly helped me find! If you look closely, you can see some of the patients in their beds have been moved onto the balconies.

Another historical view across the gardens. Source: https://www.flickr.com/photos/brizzlebornandbred/13084648414/in/photostream/

Another historical view across the gardens. Source: https://www.flickr.com/photos/brizzlebornandbred/13084648414/in/photostream/

The present day entrance to (most of) the building. This is just round the corner from the original entrance. Own photograph, Dec 2014.

The present day entrance to (most of) the building. This is just round the corner from the original entrance. Own photograph, Dec 2014.

Another present day view, through across the stepped levels of the gardens to the building. Own photograph, Dec 2014.

Another present day view, through across the stepped levels of the gardens to the building. Own photograph, Dec 2014.

What remains of the status in the centre of the pond which can be seen in two of the historical photos. Own photograph, Dec 2014.

What remains of the status in the centre of the pond which can be seen in two of the historical photos. Own photograph, Dec 2014.

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Life Around and After a Death

CN: bereavement, anxiety

 

Arriving at the hospital, I went straight to reception, and asked for directions to the ward. The receptionist swiftly phoned the ward, and asked for someone to come down to escort a patient there.

Because clearly everyone arriving in a wheelchair is a patient. Hmm.

 

I’m not writing this blog to make my Mum’s death somehow about me. Rather, my hope is to take the opportunity to show the effects of disability permeate all aspects of our lives, including our experience of death(s). In a sense, I feel like this is consonant with the broader tendency, in the wake of the death of one close to us, to take stock of our own lives.

 

  1. Getting to places in emergencies

If you are requesting assistance when travelling on the UK rail network, you are meant to do so at least 24 hours before travelling. Evidently anyone who requires assistance, e.g. with carrying luggage, ramps to get on the train, and so on, never encounters emergency situations for which they need to travel at short notice. I did phone up before travelling, but ended up nearly being left on the train and travelling past my destination.

 

  1. Being more than a disability or illness

The palliative medicine team who were caring for my Mum seemed really good at doing so holistically, as a person not solely defined by her illness. I think this extended to her family (including myself) as visitors too. For instance, I had an interesting conversation about learning history with one nurse, as she was around when I sung my Mum a Red Army song I’d learnt, to show her the changes to my voice.

However, this holism was not universal. The assumption I encountered in the anecdote with which I opened this post was one repeated by other staff on other visits. I can see a (darkly) humourous side to it, but it also says worrying things about how we see disabled bodies. Being in a wheelchair was seen as defining me in such a way as to lead to the assumption that I was a patient; are people in wheelchairs incapable of being valued supporters for others? It is true that I could not help my Mum out practically in the same way as my Dad or my brother. However, our shared experience of chronic illness gave us the opportunity to offer eachother emotional support in ways which others may not have been able.

 

  1. The days when you most need to look after yourself are the days it’s hardest to do so

You can’t hobble out midway through a funeral to have a lie down. And rooms used for social time afterwards rarely have enough chairs. And if there are chairs, you may not get to them if everyone wants to talk to you. Thankfully, I had suspended my studies to move house, and then extended this suspension following my Mum’s death, so I have some time to recover before returning to work.

Days like that of the funeral are also days on which it’s difficult to keep on top of recording activity. I’ve just written it all as a red day.

 

  1. Supervisors find bereavement easier to deal with than disability

I guess this is because it’s closer to their experience, or something which has happened to other people who they’ve supervised. The response I got from my supervisors was really helpful in this instance; they did all the suspension paperwork for me after I emailed them copies of the letter from my GP and so forth. A stark contrast to the continued struggle we have in trying to organise my work in a way which works for someone with ME. It’s reinforced my view that with the right training my supervisors could be good at working with students with disabilities too: when they understand what a situation means they do what they can to help.

 

  1. I’m better at resting well when I have activities planned

Understandably, rushing between cities at short notice is not conducive to having clear plans of what one is doing and when. Also, when you know someone is going to die imminently, but not whether it will be today or tomorrow, it’s hard to limit the time you spend with them, as you don’t want to miss out. These are two circumstances which lead me to rest inadequately.

As I didn’t have any tasks which I could complete and feel a sense of accomplishment from, it was difficult to decide at a certain time to now take a break. On several days, I ended up having a lot of “relative rest”, but nothing properly rejuvenative. Both because I put it off, as I couldn’t specify neat boundaries, but also for another reason: if I haven’t “done” anything, I tend to worry, and worrying when trying to rest ends up, for me, being more tiring that finding some minimally active way of occupying myself. Understandably, when someone close is dying, or recently deceased, this potential to worry is more than usual. As situations arise, I need to continuously negotiate and renegotiate the amounts of relative and total rest I attempt to have, in order to maximise recovery and recuperation, whilst also avoiding worrying and panicking.

With this is mind, over the next weeks I am rethinking my personal timetable. At this time I think it’s particularly important that I have clearly set and delineated plans. As currently stands, my timetable was designed when I was in catered halls for a couple of months earlier this year, meaning I had to get up in time for breakfast each day. Comparing my symptoms then with the last few weeks – which are I’d say an extreme of unplanned as an emergency situation and consequences – I think this was helpful in regulating my sleep, amongst other things. So I’m going to try to have some more fixed activities again. (In the intervening couple of months I’d been slotting work etc into a set number of half hour slots each day.)

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