Does she take sugar syndrome ?

Guest post received from Pat Onions –  a blind full time carer

I was in a shop this afternoon buying groceries and a lottery ticket. Trying to decide if it was Thursday or Friday, and pack shopping at the same time, the assistant commented… ” Must be lovely to be retired where it doesn’t matter what day it is”. “Oh I’m not retired…far too young” said I.  “That’s even better when you have enough money that you don’t have to work” came back her reply. I packed the shopping and left David to pay. David, normally the quiet one, said loudly…” My wife is blind”. From somewhere in the now lengthy queue came a retort…” She doesn’t look it.” David, turned his wheelchair and gave our standard reply,” and you don’t look stupid but looks are deceptive.”

Just another normal day in the Onions lives.

I am actually a very young (?) looking 58 year old but the way the Government keeps moving the retirement age I think I have a very long time to wait.

Society is as much to blame. The international symbol for disability is a person in a wheelchair. That is the stereotype of disabilities. I suppose I should have a guide dog, or long white cane and dark glasses. I don’t. We have 2 Border Collies whose walks are physio for David. I have a folding white symbol cane which sighted people have no idea what it is for. If I wear dark glasses I bump into everything instead of just most things.

I think the experts, and how we love them, tell us…It’s not our ability to live in society but societies ability to live with us.’

Over the past 26 years I have had too many dealings with ‘experts.’ They have many disguises. Social workers, rehab officers, local authorities and the real biggy, Government Departments. ( Not forgetting Joe Public…he is the biggest expert, on everything, in the world.) They meet in packs calling themselves, strategy. focus or scrutiny groups. Posh ones are implementation boards. They talk about policies, guidance, transparencies, tool kits, outcomes and good practice. Language is their own. Blue sky thinking, thinking outside the box, doesn’t think it and plucking the fruit from the lowest branch. AND don’t forget punctuation…there isn’t any. I listened to a sentence that went on for so long I forgot the question! They talk in shorthand. ODI, DWP, SCVO, PRT, and PA’s. I always thought a PA was the boss’s secretary? Wrong. and don’t forget names. CT said to BJ, WM has seen TC and SG will clear it with BO. 

If you are really lucky you will be invited to one of these huddles. Usually with the pretence that they need the input of you as a disabled person or carer. They all have one aim and one aim only. To find as many ways of NOT parting with ANY money under any circumstances.

I attend Holyrood several times a year to keep MSP’s up to speed on things that should concern them. Last year one chap, local authority I think, gave a well meaning presentation about the lean times ahead of us all. He told us it will take between 3 to 8 years for us to get back to the excellent level of service we were used too. I was incensed with his remarks. I pointed out to him, and the gathered throng, that we had NEVER had good times and NEVER been given a service so get his facts right. It was an insult and I let him know. Nothing from nothing is still nothing and yet Government is trying to squeeze that last little bit of spirit we have left. Well they aren’t getting mine!

David comes with me to take notes. Pencil poised above blank paper ready. An hour later his pencil is still poised and the paper is still blank. At the end you are asked how you felt the meeting went? Vultures on speed is my thoughts.

How many times have I gone, with David, and hope in our hearts? Hope that at last we are going to be listened to? We always say.. ‘Ask us what we want and listen’.

Do they heck as like. Yes they ask and yes they listen and then do what THEY think we want. Always get a jolly good lunch though!

I went, with other blind friends, to a presentation from the talking books for the blind service. The clue is in the title. We all sat at round tables, rather like King Arthur’s knights, with pencil and papers on the tables! We had a film, all pictures and no words, explaining all about talking books for the blind. At the end we were all asked to fill in a questionnaire on what we thought and would we like to make a bequest?

I asked one of the organisers if he could help me fill in the form? “Of course…what’s the problem?” I genuinely believe they had no idea about blind people. Did we laugh? Of course we did. It was just unbelievable.

When I am driving David in his wheelchair well meaning folk always ask me how he is. And the number of times I have stood at street corners waiting for him and been marched across the road. When I try to protest that I was waiting for him my words get misinterpreted as being shy and modest. When they realise I really did want to stay where I was…’Well that’s gratitude for you’ comes the reply!

Going back to ‘She doesn’t look blind’, syndrome, folk have to do the ‘test’ on me. “Can you see my car? What colour is it? What am I wearing?”  What’s that Mark twain said? “Keep your mouth shut and appear stupid rather than open it and remove all doubt.”

Any disabled person, no matter what they have, is a huge uphill battle. A battle on a daily basis, swimming furiously against the tide just to stay still. The tide of not being able to get the help, support and equipment you need. Oh yes…. I was given a liquid level indicator once. A natty little device which you put in your mug, pour boiling water on and it buzzes and vibrates when the mug is half full. The idea is that you don’t overfill the mug and scald yourself. The fact you can’t see where the mug is and more likely to pour boiling water over yourself doesn’t appear to have registered with the designers! I had a better use for it. One glass, one bottle of gin one indicator and pour. Only problem is no room for the tonic! My friends love coming to our house!!

I mustn’t forget the bump ons too. They are tiny little bits of raised rubber in a choice of colours. Black or orange. Half the size of a well-chewed fingernail. Chewed with frustration at not getting the real help you need. Anyway…. you stick these, but remember you can’t see where, on the side of measuring jugs to indicate 1 for a pint or 2 for half pint. You can then pour liquid to that bump on. Small design defect…they don’t stay stuck for long. You forget and recipe requires a half pint but one has fallen off. result is a vast quantity of milky sauce over the cauliflower cheese!! AND they cost 10p EACH. I have been known to unscrew the U bend in the kitchen sink searching for one!!

I do have one piece of equipment, which is brilliant. A high intensity angle poise table lamp. In fact I now have 2. Some 3 months after I got the first one a little man from the council called to check it works. He was from Health and Safety. I was at a loss for words. Last week he rang to ask if he could visit to check my lamp? I told him I had 2 now and could he check both to save another trip? Silence, then he said ‘can’t do that. Only one has to be checked.’ He came and I asked him to identify which was the newest one? Both lamps were given a full scrutiny and he was baffled. Apparently the one he had already ‘serviced’ should have a minute sticker on it and there wasn’t. This minute sticker has a phone number on which I am supposed to call if the lamp breaks. The fact that I am blind and can’t see this sticker is me being a nuisance! He did check them both, bless him, but I was on strict instructions NOT to tell anyone. He told me he had put stickers on the lamp transformers which plug into the sockets. Oh good says I…my baby Border Collie loves bits of paper and anything on or near the floor is fair game!!! I thought he was going to cry as he hastily left.

 I could fill a book on the stories of social workers, community care and the other folk who are supposed to look after us. People wouldn’t believe it but truth is always better than fiction.

One thing is for certain. Not one disabled person or carer I have met in all those 26 years could EVER be called a Benefit Scrounger. We are normal people with a bit or 2 broken or missing through no fault of our own. Many treat us as second-class citizens with nothing to offer. Nothing could be further from the truth. I, like so many, lead a full, varied and mostly fun life.

I can’t do everything; in fact I can’t do much, so when I ask for help it is genuinely needed. It never comes and never will do.

Pat Onions

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5 Responses to “Does she take sugar syndrome ?”

  1. ians12 Says:

    “A Pack of Social Workers” lol I think that one should go in the dictionary as a collective noun!

    I take your point about the “symbol for the disabled” it conveys very little about the broad spectrum of disabilities.

    We encounter the same type of problem when booking seats for functions, I tell them my wife is disabled and they invariably say “oh, there are spaces at the BACK OF THE ROOM for wheelchair access” they seem genuinely puzzled when I demand seats near the stage with easy access to toilets (ie at the END OF A ROW). They hadn’t bargained for someone on elbow crutches!

    And so the unwitting discrimination goes on daily, and successive governments have done nothing to execute compulsory training in schools about disability discrimination nor have they implemented fines for employers who do not undergo training in discrimination.

    Truth is they do not have the guts to do it, any of them.

  2. Funky Mango Says:

    I had a literal case of “Does she take sugar” yesterday morning. The agency carer asked me three times if I take sugar. Three times I said no. I still got it! Could it be because there wasn’t anyone else there to ask? 😉

  3. Tweets that mention Does she take sugar syndrome ? « Carer Watch's Blog -- Says:

    […] This post was mentioned on Twitter by BendyGirl, Double.Karma and Broken OfBritain, Rosemary. Rosemary said: @ComCareAdults @BrokenOfBritain @RhydianFonJames @RNIB Does she take sugar syndrome ?: […]

  4. tiddk Says:

    One thing I would add to this EXCELLENT blog is this :

    I’ve had visits from OTs (Occupational “Therapists”). They are universally and uniformly stupid / dull / uninterested.

    I’ve now had recent contact with the OT “Practical” Arm (in truth, they have little contact) called “Care and Repair” who do the practical adaption work in your home. They are as fantastic as the OTs are useless.

    If you two haven’t been put in touch with “Care & Repair” yet, can I heartily recommend you ask for this service?

  5. jo Says:

    hi my disabilitys are hidden i either walk ect slowly or dont at all i have a chronic blood disorder, M.E and lots of other bits and bobs going off.
    I have had people want to fight with me because i have a blue badge and they think i look ok i have been reported to DLA because i sometimes have ok days ( useally pay for it days after though ) and they called me in for a one and a half hour interigation.
    i am also a carer for my disabeled daughter and i do my best ,when the DLA left me alone whoever this evil evil person is then phoned DLA about my daughter. Sent me a form filled it in with doctors and hospital details i think its ok anyway i am not going to let them win but it dose not help its just made my ME worse. I will fight for my rights

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