How School For the Blind Used To Be

this black and white film was made in 1961 at Dorton House School, Kent.Its amazingly Dickensian. Hymns to start and end the film.

When I took over the headship some 23 years later, things had moved on but I took over from the same Head. Only now seeing the film do I better understand his vision which was played out in that wonderful mansion setting. Everything in its place, strong discipline and Christianity never far away. Around ten past four on my first day, there came a knock at the door. One of the staff appeared in traditional kitchen maid’s costume/dress and laid a tray for me with tea an cake; so, as I say, now i get that perfect vision he had.

Sadly or happily, I think, the medical people destroyed that vision and, in the end the school. By 1984 we could not muster a football team of able lads and the 1980’s and 1990’s had sight problems amongst a whole range of other disabilities and the school did not long survive the turn of the century.

Nevertheless, this film is a testimony to a great vision and achievement for the time and many children with sight loss owe a huge debt to Dorton House School and its staff.

So enjoy something very different and I am sorry I can’t set up a direct link to the film./

Watch Eyes of a Child online – BFI Player

TWO-FACED SNEAKY OR WHAT

Surely this has nothing to do with disability, with being a disabled person or having an impairment; but has it?

For years  I could read for a short while with an ever- strengthening   powerful magnifying glass with its own light. Great. I used to boast that I could see to read cheques but not bills. We all  know what a challenge it is, even how difficult it is, to get about if you have a significant visual impairment; but I  managed to travel the country to see a special girl. Did I stand and look helpless to get attention while, later in  the day running to catch that bus? Of course. And what about the State Benefits game and the way you have to make sure you get all, or a bit more than, you are entitled to? Well I was fortunate  and never had to get involved with that one until I applied for the Attendance Allowance, now PIP. It seems that, having been thoroughly drilled to be independent and capable for years, you all of a sudden have to paint a picture of yourself as    scarcely having the ability to wipe your own bum.

No wonder our charities and our government struggle to keep things going to meet ever-increasing demand on their services and benefits. And no wonder things are not changing because we, as recipients of either or both, we don’t want to lose out. But there is a solution which at least aught to be talked about even if it can’t be easily implemented.

So the ground source of the trouble, at lease as far as sight loss is concerned, is this two million number game, so important to fundraisers. I wasn’t there at the time but I guess RNIB, deafblinduk and Blind Veterans   and most local charitable organisations, got off to a good start with a few caring  people  round the table including two or three actually  with no sight or actually not able to see or hear,  who directly or indirectly inspired the new venture. Fabulous and wonderful how they grew, raised funds and delivered much-needed services.

But watch for the signs of the rot setting in.

  1. Changes in terminology: Embarrassment about the word blind or deaf and the coming of words like visual impairment, sight loss, and visually challenged.
  2. The commercialisation of services: We have even reached the stage that other charities have to support blind people to benefit from the large blindness charities’ product or service. The cost of a wonderful guide dog is over £50,000 and the whole totally worthwhile guide dog venture requires a huge commercial and fundraising  operation including TV adds and the whole works.
  3. A dreadful blurring of need: Those with absolutely no vision are often treated no  differently to those, like me  who have been for most of my life, with some useful sight, though significantly sight-damaged.
  4. Selling off the family silver: Those really blind or really deafblind do need the opportunity to be together to learn new coping strategies and re-kindle their self-esteem. Notice how gifts of land or property to blind children or adults for this purpose have been sold off to sustain the bank balance.

 If you think of services as being like a jam sandwich, there should be plenty of jam for the totally blind and less for  those with some sight, possibly a generous portion for those losing their sight. As things are, there are just too many in the queue for those jam sandwiches and it almost appears as if the main effort is now directed towards paying to keep in post those providing that thin jam service.

So, unpopular as this will make me, I admire the government for at least trying to re-define disability even though I hate to think of really deserving individuals being  wrongly assessed  and denied what they need and have a right to.

Would it be possible for our leading charities to take a similar line, revive their strategies and dare to focus on the fewer most needy service-users? Would it be possible for their leaders to dare to draw back from the two million rising to three million and re-define significant  vision or hearing disability around the old-fashioned blind or nearly blind and deaf or nearly deaf concepts? Sadly I doubt it so long as they can get  away with not having to do it. But maybe there will come a time when shaking the money-tree fails to drop fruit into their laps and perhaps that could be no bad thing. It sadly looks like the numbers game, the two/three million and the number of services provided will continue to rule unchallenged.

Surely this has nothing to do with disability, with being a disabled person or having an impairment; but has it?

For years  I could read for a short while with an ever- strengthening   powerful magnifying glass with its own light. Great. I used to boast that I could see to read cheques but not bills. We all  know what a challenge it is, even how difficult it is, to get about if you have a significant visual impairment; but I  managed to travel the country to see a special girl. Did I stand and look helpless to get attention while, later in  the day running to catch that bus? Of course. And what about the State Benefits game and the way you have to make sure you get all, or a bit more than, you are entitled to? Well I was fortunate  and never had to get involved with that one until I applied for the Attendance Allowance, now PIP. It seems that, having been thoroughly drilled to be independent and capable for years, you all of a sudden have to paint a picture of yourself as    scarcely having the ability to wipe your own bum.

No wonder our charities and our government struggle to keep things going to meet ever-increasing demand on their services and benefits. And no wonder things are not changing because we, as recipients of either or both, we don’t want to lose out. But there is a solution which at least aught to be talked about even if it can’t be easily implemented.

So the ground source of the trouble, at lease as far as sight loss is concerned, is this two million number game, so important to fundraisers. I wasn’t there at the time but I guess RNIB, deafblinduk and Blind Veterans   and most local charitable organisations, got off to a good start with a few caring  people  round the table including two or three actually  with no sight or actually not able to see or hear,  who directly or indirectly inspired the new venture. Fabulous and wonderful how they grew, raised funds and delivered much-needed services.

But watch for the signs of the rot setting in.

  1. Changes in terminology: Embarrassment about the word blind or deaf and the coming of words like visual impairment, sight loss, and visually challenged.
  2. The commercialisation of services: We have even reached the stage that other charities have to support blind people to benefit from the large blindness charities’ product or service. The cost of a wonderful guide dog is over £50,000 and the whole totally worthwhile guide dog venture requires a huge commercial and fundraising  operation including TV adds and the whole works.
  3. A dreadful blurring of need: Those with absolutely no vision are often treated no  differently to those, like me  who have been for most of my life, with some useful sight, though significantly sight-damaged.
  4. Selling off the family silver: Those really blind or really deafblind do need the opportunity to be together to learn new coping strategies and re-kindle their self-esteem. Notice how gifts of land or property to blind children or adults for this purpose have been sold off to sustain the bank balance. I must make very clear that there are circumstances when it is totally right and proper to sell off land or premises which no longer serves the original purpose of the gift.

 If you think of services as being like a jam sandwich, there should be plenty of jam for the totally blind and less for  those with some sight, possibly a generous portion for those losing their sight. As things are, there are just too many in the queue for those jam sandwiches and it almost appears as if the main effort is now directed towards paying to keep in post those providing that thin jam service.

So, unpopular as this will make me, I admire the government for at least trying to re-define disability even though I hate to think of really deserving individuals being  wrongly assessed  and denied what they need and have a right to.

Would it be possible for our leading charities to take a similar line, revive their strategies and dare to focus on the fewer most needy service-users? Would it be possible for their leaders to dare to draw back from the two million rising to three million and re-define significant  vision or hearing disability around the old-fashioned blind or nearly blind and deaf or nearly deaf concepts? Sadly I doubt it so long as they can get  away with not having to do it. But maybe there will come a time when shaking the money-tree fails to drop fruit into their laps and perhaps that could be no bad thing. It sadly looks like the numbers game, the two/three million and the number of services provided will continue to rule unchallenged.

An Older Man

This is about Testosterone DEFICIENCY AND SELF IMAGE

There is plenty of information on the web about the effects of low testosterone in older men. I am 73 and had pretty bad bowel cancer some 14 years ago and have experienced low T progressively and gradually since that time. This is not the time to boast about my earlier conquests of the opposite sex in early manhood, but I certainly lived a normal healthy life and struggled to be a good faithful husband. I attended an all mail boarding school and, as sometimes happens, my relationships with girls were almost always spoiled or magically intensified  by the desperate desire to go to bed with them. Nice to blame my bad behaviour on excessive testosterone but I do prefer to take some personal responsibility as well.

So how did I cope with some of the side effects resulting from cancer and is it just possible that my experience could make life a bit easier for others in the same boat? Granted, there is lots of professional help and advice on the web and from other medical and psychological sources and I fully appreciate that my ways and my views will not suit everyone. I have, however, learned to cope with lots of difficulties in my head and with a good deal of comfort. There are two elements to my thinking: In the first place, the effects of low T are normally stated in terms of deteriorating manliness. Secondly, there is almost an unwritten and unspoken assumption that such effects are all bad. I will challenge both elements because I have a good self-image and have learned to be OK with myself, my body and my mind, as it is.

So first, what about deteriorating manliness! Yes my sexual drive and penile prowess is not what it was and yes my hairy chest is less hairy. But my attitude to women is very different. I am happy hugging, conversing,sharing deeper knowledge and enjoy their company for what it is rather than for what I can get out of it and this must be a bonus. I now have women as genuine friends and I am learning to understand their needs and views in a way which was previously blocked out for me because of my desires. I can flirt without complications and I have a wonderful wife who wants me as I am. I would not go back to the days of either mental fantasy or actual physical infidelity and the huge disturbances to family life that such antics can cause. Well I might if I could!!! (smile)))  

So now what about the low T effects being all bad//! Well I guess I have answered this one already. For me, there is much good and just a little not so good in my current situation. The good part is that I make less mischief for myself and my family as a low T oldie but the virile male still exists in my brain and fantasies, of course. But the rule ‘fantasise but don’t touch’ is easier now. But I have to test this hypothesis from time to time!!! (Smile)  

Grudgingly, I admit that respect for my own behaviour and respect for women in general has grown and been sustained over the years. 

So now we are just left with the question of having a good self-image. I actually think that, looking back, I had a poor self-image for much of my life. This might well have blighted my career both personally and professionally and been a large component in my poor behaviour towards women. This is by no means unusual and they say that St Augustin was randy in youth and more saintly as he grew older. Fortunately the university of life teaches us to cope and prosper if we learn from it and I have experienced all the traumas of modern life with a good heart: Redundencies, divorce and Cancer etc and am still smiling.

I am not even sure this next bit is relevant but all my life I have had very poor sight. As a youngster, I seemed to be very dependent on others and not able to reach my potential   without special help from parents, the special education system and considerable understanding and provision on the part of employers. Perhaps this could somewhat account for my low self-esteem. If you have such a disability, praise is not easy to accept because there are no clear standards for success. Being kicked about a bit and staying upright and afloat has given rise to confidence which is now well rooted within my psyche. And this takes me back to the business of being able to stand up upright. Oh dear!!! It never seems to go away, this problem for men.

So, chaps with low T, See your Doctor, take the pills, have the expensive operations, boast to your mates and do whatever it takes to keep up the macho image if you like; but there is another way. Just be yourself, enjoy love and care and lots of physical contact without so many erections and ejaculations and you might just find that life is not so bad. There is much conventional wisdom which states that the girls love the older guys. Maybe it’s sometimes because of our money but sometimes it is because of our modified behaviour.

LOW VISION FATIGUE

Through most of my life I have experienced huge fatigue when looking/reading for any length of time over two or three minutes. Low vision friends tell of similar experience. Even with the latest and best electronic  magnifiers, this fatigue does not go away although it is lessened to some extent. You quickly get to the stage where you want to rub your eyes, scream and just do something else, anything else that is not visual.

Crazily it took me years to really rely on speech output and listen rather than look when reading or writing. It’s as if your brain compels   you to keep looking while you have some sight. It’s so obvious, this low vision fatigue that I could not believe it needed academic research to prove its  existence but…here is a link to a Dutch research project which, if you can rise above the language of the experts, supports low vision  fatigue as a  reality.

https://bmjopen.bmj.com/content/7/8/e015023

My  precis  of the research and my precis of personal and professional experience and shared knowledge is that prolonged low vision looking is bloody tiring and we need to adopt a way of life which avoids it where possible’.

It is the language that causes the misunderstandings. Low vision fatigue used to be called eye strain. But it was and is not the eyes themselves that were strained. Rather it  is the mental processes involved that soon lead us to feel necked.  Eye strain has for several years been poopooed and we have been rightly urged to look look look, to use our vision rather than lose our remaining vision. But the fatigue, of course, continues because it is real. We allowed the language to become confusing.

My Hope is that, when professional awareness training is delivered,(sadly too often by seeing people), low vision fatigue will be listed amongst the major experiences.

I imagine that very few readers will want to read the whole research project; but I offer the abstract below for those wanting a little mor in-depth understanding. But, again, there is a language problem. First you have to get your head round cognitive and   first-level codes and the like; but its good stuff   and well worth reading. Remember the punchline, though: ‘Low vision looking/reading is bloody tiring’. And maybe a good coping strategy is to make the best and most  appropriate use of assistive technologies.

Webpage: Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study | BMJ Open

Heading 2: You are here

Qualitative research

Research

Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study

Wouter Schakel,

Christina Bode,

Hilde P A van der Aa,

Carel T J Hulshof,

Judith E Bosmans,

Gerardus H M B van Rens,,

Ruth M A van Nispen

Heading 2: Author affiliations

Heading 2: Abstract

Objectives:

 Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue, causes, consequences and coping strategies.

Setting Two large Dutch low vision multidisciplinary rehabilitation organisations.

Participants 16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling.

Methods A qualitative study involving semistructured interviews. A total of four first-level codes were top–down predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were analysed with a combination of a deductive and inductive approach using open and axial coding.

Results Participants often described the symptoms of fatigue as a mental, daily and physical experience. The most often mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high effort necessary to establish visual perception, difficulty with light intensity and negative cognitions. Fatigue had the greatest impact on the ability to carry out social roles and participation, emotional functioning and cognitive functioning. The most common coping strategies were relaxation, external support, socialising and physical exercise and the acceptance of fatigue.

Conclusions Our results indicate that low vision-related fatigue is mainly caused by population specific determinants that seem different from the fatigue experience described in studies with other patient populations. Fatigue may be central to the way patients react, adapt and compensate to the consequences of vision loss. These findings indicate a need for future research aimed at interventions specifically tailored to the unique aspects of fatigue related to vision loss.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

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Heading 3: Strengths and limitations of this study

This qualitative study provides an in-depth exploration of the patient perspective of fatigue in visually impaired adults regarding symptoms of fatigue, causes, consequences and coping strategies.

Participants were selected from two Dutch low vision multidisciplinary rehabilitation centres through purposive sampling to reflect a range of demographic characteristics (gender, age and work status) and disease characteristics (ophthalmic diagnosis, visual acuity, visual field and disease duration).

Participant’s symptoms of self-reported fatigue were checked with a well-validated instrument to assess fatigue severity.

A random selection of 10% of the citations was matched to the existing coding scheme independently by a second researcher to improve reliability of the coding process.

Limitations include the relatively small sample size and the relatively young age and high amount of rare eye conditions in our sample which may limit the transferability of the findings to the total population of visually impaired adults.

In Defence Of Braille

: Paul Gough Hopkins

Happy Birthday Louis Braille!

Why write all the following down when someone has already said it way better than I could have without sitting for a couple of hours to think it through.

I’m so thankful that I was taught Braille at school. I did protest at first and they let me try writing in large print for a year. I quickly realised that wasn’t an option for me and I was encouraged and enabled to go back to learning Braille and I applied myself with a vengeance. I was about 8 at this point.

Braille has also provided me with a living for 25 years this year so, in a very real sense, it is something I’m passionate about.

Please do take the time to read what the post I’m sharing says as it never hurts to have the support of others as Braille is often deliberately not taught when it should be and the large charities which supposedly represent blind people often undermine it.

Article Start

Heading 3: Áine Kelly-Costello

It’s Louis Braille’s 212th Birthday today. I had the privilege of learning Braille from when I was 4. This year, I’d like to offer a message to parents, teachers and aids who work closely with blind and low vision children throughout their education:

For every student who has very little useable vision, or is likely to lose what they have, or whose eyes get tired when they read – if you have the means but choose not to put the effort into ensuring they learn Braille at school, you do them a huge disservice.

Please don’t delay  just because their useable vision is decent right now or because they can still read large print. It doesn’t matter that they don’t use Braille all the time for everything. And, no, it also doesn’t matter that most things Braille helps with are technically manageable with a screen reader.

Here’s the thing.

Braille is *not* a language—it’s a code—but learning Braille is a bit like learning a foreign language. It’s a hell of a lot easier when you’re 5 or 10, than when you’re 18 or 25 or 50. Of course it can still be done later, but, like learning a language, it requires that much more regular effort and dedication, especially when that involves fitting it around the rest of a busy life, or possibly trying to learn it when vision has just taken a nose-dive.

Can we stop this unnecessary deprivation?

Here are three of many reasons Braille is still a useful tool in many situations. Braille-reading friends, feel free to add your favourites in the comments:

1. You can give your memory a break. Whether it’s glancing at powerpoint notes, facilitating a meeting or taking notes in class, Braille is exceedingly helpful. Listening to a screen-reader while trying to either listen to someone else or to speak yourself can be difficult and draining. Also, some subjects, like Maths, really are easier when you don’t have to keep screeds of details in your head.

2. Labels have many uses. Whether it’s reading the lift buttons, medication labels (where available) or remembering what some print pages you need to keep track of are about, Braille is a convenient and quick way to get that crucial info. Also, by the way, receiving Braille Christmas cards never gets old.

3. Pleasure reading and language learning. Screen-readers are great for many things, but shall we say they were not designed to ‘make poetry sound beautiful. Also, if you’re learning a foreign language, trust me—the ability to learn how to spell and be able to read without relying on a screen-reader is a life-saver if you don’t have bottomless patience.

So let’s do better. Let’s remember that Braille is one very useful tool in the toolbox and that if you withhold it from students who might benefit from it now or later, you, however unintentionally, do them a disservice.

Braille displays are slowly but surely becoming more affordable so the technological barriers are coming down.  Let’s not put any other roadblocks in the way. Every student  who might benefit from knowing Braille now or later has the right  to learn the code as early as possible.  That way, it gives them choices about how they read and write, not just now but for the rest of their lives.

A Care Home Perspective

I was moved to hear about an old school friend, now in a home, having to wait fifteen minutes before being cleaned  up after a bad bout of sickness.  Distressing, of course and we all dread not being able to take care of our own needs. But one of my first jobs after graduation was working as an orderly on a hospital ward. I had more vision in those days. Obviously I got all the dirty jobs as the lowly newbie on the team. Sorting bed pans, feeding patients, clearing up their sick was my norm and, in those days, many were sick after a general  anaesthetic. So is fifteen minutes wait bad care or  good care? I am sure I kept patients waiting while I finished mopping up another. Is fifteen minutes wait good or bad management? Well, this is about timing. There were very busy times and other times when there were enough of us to do it all. So what about resources?

I think most care homes these days are profit-making concerns and this does not make them bad or exploiting as such; but fees and costs determine the possible efficiency from the patient’s   point of view and also for the continued worthwhile functioning of each home. And what about the carers in all this?

I only lasted nine months as an orderly but many carers remain lowly in the organisational hierarchy for years  and maybe clock up dozens of sick mopping-ups each day, week or month. Thank God they keep going for all our sakes. And, when its my turn to helplessly lie amongst my own sick, I do hope I will remain in the state of mind that reminds me to say thank you for what you do. 

Zooming In To Christmas Week

Of course, there is stuff to learn but the Zoom thing works well with  our screenreader technology and, as often happens, I see more of a face on screen and hear more of a conversation in my  headphones than round a  table  where taking  turns to speak can be not so disciplined. On Zoom, we have shared meals with friends,  enjoyed lots of church services, attended several concerts and learned lots from webinars. So we look forward to zooming through the Christmas period, not being isolated from our families and even doing a crossword which we can’t see to do ourselves with some very special friends. If you don’t know what Zoom is, I suggest you ask until you find out. You need a smartphone or a computer and, if you don’t want to be isolated, you need to get your bum in gear and set about learning to do these things, no matter how old you are. It all keeps the  grey cells busy.

A Beautiful Tapestry

I don’t know about you, but sometimes I miss out on a good thing just because of its title or a write-up.  But  don’t be put off by the title, A  Beautiful Tapestry, a Christian book, or even blindness and deafness. This one is way above all that. If you are held back by things in your life, if you want a good laugh, and, most of all if you are in need of some inspiration and encouragement, go ahead, spend a little money, enjoy and wallow in an unexpected spiritual kick in the behind.