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Enabled by your Environment

What a positive world we live in. Apparently I am not disabled, I am differently abled. I guess being negative is seen as… well… negative. One day, Bam! I was hit in the face. Not literally you understand. I have not been attacked by people who disagree with my blogs. Although that might well start after this. Then, Wham! Not the 80’s pop duo. You see I had an epiphany and it’s not even Christmas.

My wham, bam, epiphany came last year actually. Don’t accuse me of rushing of a blog every time I have an idea. It was when we moved to our new house last summer. I would say our beach view house, but I don’t want to make you jealous. Too late, I said it. I realised, We can be, enabled by our environment. Let me explain:

We moved in to this new build house. Now I need to pause a moment. This house is M4, no it’s not in the middle of a motorway. The M4 category of housing is an accessible housing category. It means that a house is built to be wheelchair visitable. That means exactly what it sounds like. You are meant to be able to visit it in a wheelchair. The government have a strategy to make all new houses M4… eventually.

An aside here, I cannot visit the majority of my family and friends. I can think of one house that might (I haven’t yet tried) be accessible to me; in part. You might be unmoved by that. But imagine being unable to visit your family and friends. Got that in your mind? Would you find that hard? I know I do.

Having moved into this house with its wide doorways and corridors I noticed something. I could access the whole downstairs. Wow! You’re thinking, access all of downstairs. What’s novel about that. Sometimes I think everyone should spend a year in a wheelchair. The world would change pretty quickly. I imagine blind people may wish everyone could experience blindness for a year. Or deaf people may wish people may wish people could experience profound deafness for a year. I say a year, because a few hours don’t give you any idea of a disability. Many carers have sat in a wheelchair to see what it feels like. People have put on blindfolds or blocked of their ears. But such very short term trials, give no idea as to the long term implications of a disability. I have only mentioned three obvious disabilities. I am not suggesting that other disabilities are lesser.

Back to my sudden realisation. We can be, enabled by our environment. In a wheelchair, even a 1” bump is significant. When you walk you just step over every bump and step, without even seeing it. I have lost count of the places I have phoned to ask about accessibility, to be told they are wheelchair accessible. On arrival, they have steps, steep slopes, gravel or narrow doorways.

We can be, enabled by our environment. When we moved to this house I wheeled around freely for the first time ever. Then after the Disabled Facilities Grant, added a through floor lift, I wheeled around upstairs. I can now access every part of this house. It has been years since I could say that about a house.

But access alone is not the point. Access is only a means to an end. Access is reaching a place or thing. Getting somewhere.  There are still ‘things’ I cannot reach. High cupboard, light fittings, high shelves.

The realisation that I came to was that being able to reach things, get to places, approach a location, enter a room, changes my outlook and gives me opportunities. I did not gain health or strength when we moved here. But, with the same limited strength I already had, I could do more. I gained opportunities. I was enabled by my environment. Rather than make this a very long blog, I will talk of the details of that another blog.

I have deliberately talked of being enabled by my environment. It is the positive side of the better known expression, ‘disabled by your environment.’ We can be, enabled by our environment. All it takes is the political will for housing and buildings to be made more suitable. It is life transforming.

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One thing not to say to a disabled person

There seem to be a lot of lists on the internet saying, ‘x things not to say to disabled people,’ x varying from 5 to 20. Recently there was even an article in the Guardian headed ‘9 things not to say to a disabled person.’

One of those x things on the list seemed to sum up most of the others, it was really about identity. It interested me on several levels. The thing not to say was: “Come to my religious institution and we will cure you.”. This wasn’t about religion per se, but about change or cure. The answer given in the article of why it was a bad thing was this: “For me and many others, this is simply who we are, and we’re proud of our identities. Above all else, we do not want your pity.” I have found many variations on this basic idea in other articles, but this one was in the Guardian by Lucy Webster.

I can give you my take on the above and because I am a full-time wheelchair user myself, I have a right to say it, it isn’t me being discriminatory:

  • Disability does NOT define me.
  • Being unable to walk is NOT who I am.

I understand what would make Lucy say what she did. She is probably fed up being looked down on and pitied, so am I. But the answer is not to say, ‘less is more.’ Or to argue that being limited and disabled is so fantastic we wouldn’t ever want to change. The answer is to say:

  • ‘In spite of the limitations which I have, I am still a worthwhile human being.’
  • ‘In spite of the way you may perceive me, I am complete inside.’
  • ‘In spite of the disability that is apparent I have much to offer.’

You cannot sum up a person by what you see. You cannot understand a person, purely by externals.

The issue then is not whether I accept the state of my body as it is; I do not, I would like to walk again. The issue is whether the world accepts me as I am. Surely that is the case with all limitations isn’t it? We are created to have all our limbs and function fully. When we don’t then it is a struggle; that is just a fact there is no getting away from. Yes, we can overcome and that is amazing, and heroic and admirable, but still really difficult. The key thing is that we are just as worthwhile and valuable as human beings with or without full function. But it is only human that we would choose to have full function.

There is something definitely not to say to a disabled person and that is: ‘You are a drain on society and not worthwhile.’ I think that is what’s behind a lot of these online and newspaper lists. So long as we stand against such atrocious and appalling ideology then, we as a society, have hope. Physical limitations are just that, limitations, and like all limitations, they can be overcome with ingenuity and equipment. Remember the person inside is what is important and no matter how they appear outside they are worthwhile and valuable.

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Care, a unique relationship

Care is a very strange thing. It’s a relationship that is very intimate. Only in medicine do we have equally intimate, yet non sexual things done to us by other people. More intimate in many ways than a husband and wife and yet obviously less so because it’s a one-sided intimacy. Think about it, who is the last person who wiped your bottom? Who is the last person who washed you or got you dressed? Your parents presumably. It’s a relationship where strong bonds of friendship can sometimes form and yet there is a professional distance. There is seriousness and fun, work and play, sadness and joy. In a way many of life’s experiences are lived out through the relationship between a carer and client.

Every situation will be different, not every client is fully aware, alert, able to process where they are or what is happening. Not all clients receive care graciously, some will be difficult and awkward. Not every carer will connect with every client. But, when it works, when everything comes together, when people connect well. Then care can go beyond being just a job.

For me I have had many carers where things have come together just right. I started out by finding being cared for the most embarrassing, awkward and difficult of experiences. Over time I have learnt to accept it and find the laughter in the embarrassment, the fun in the awkwardness and the joy in the difficulties. Not taking myself too seriously has been a great way forward. Most of us struggle with pride and a sense of self-importance that makes it hard to accept help and embarrassing to be cared for.

The one word of advice I would offer to anyone facing being newly cared for is to have a laugh. Don’t be heavy, try and look at the silly side of it all and don’t take yourself too seriously. Yes, it is embarrassing and awkward to think about. But, carers are so professional and well trained that when you get to the situation where they are washing, dressing or helping you on the toilet, you will find it is far less embarrassing than you ever imagined.

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Shall we get in the bath?

“OK, shall we get in the bath now.” This was said by one of the two young ladies who were preparing my bath at a nursing home.

“Is there room for all three of us?” I asked innocently.

I had noticed over the previous few days that “we” was used by carers a lot. I guess it was to be encouraging or they just hadn’t thought of it. But once I zoned in on it I realised that carers were asking to join me in the bath, in the shower and even in bed “shall we get into bed now?”. They were wanting to eat my food, wear my clothes, get into the sling before me and even sit in my wheelchair! “Shall we get into the wheelchair?” I suggested they might be heavy on my knee.

When I got home from the nursing home, I was so focused on it I noticed my carers at home similarly wanted to eat my lunch “shall we eat now?” and wear my clothes “what shall we wear?”. Of course, once I pointed it out, they started to catch themselves saying it. 

The one that inspired the name of my site is, “shall we get dressed now?” This is probably the most common and one I have to bite my tongue not to respond to the most. Having pointed it out, one of my regular carers has become so aware of this that she will occasionally joke “We! Are going to get dressed now.” Waiting for my eyebrows to raise and then we both have a good laugh.

Then again it can be two way. I’ve become much more aware of saying to Mary on her return, “We’ve tidied up.” Taking credit for the carers work. 

Language is such a funny thing; we say things without meaning to and of course it’s so easy to distort meaning. But it’s also important to be aware of what we are saying and why.

There are many other blogs to explore. Please feel free to comment and if you enjoy them, please click like.

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This is the type of Bath I am talking about

Technology Fail

Early this morning someone banged on the front door. Mary had not yet woken up. No problem, we have a Ring doorbell. I picked up my telephone and pressed the app. Nothing happened! I don’t panic easily. I grabbed my tablet computer and pressed the app on that… oh, you’re ahead of me. Well, you’re wrong. The Ring app started… eventually. By which time the people by the door had decided to press the doorbell. The app showed them on my tablet. I pressed the microphone button… nothing happened.

What to do? My bedroom is at the front of the house. Over the front door. My bed is next to the window. You’re right. I used my Echo Alexa device to call Mary. That didn’t work. I found out later that her Alexa was turned down to a low volume and she had slept poorly.

Now what? All my technology had failed. I rely on it with my disability. What other way could I contact the people outside my window? A brainwave hit me. I wound up my blind, opened the window and looked out of it. The inconsiderate door knockers were by their van. I called out, ‘did you knock on our door?’ I’m quick like that. ‘Yes,’ they called back. ‘We’re here to sort the leaky guttering.’ This is sounding like a soap.

Who would have guessed that calling out of an open window could work? It never occurred to me before. All you baby boomers, of which I am obviously not one, keep your thoughts to yourself. If you are Gen X, you can join them. I know all you millennials and gen Zeds will be fully behind me. Technology was the only way to answer a door. None of this old fashioned shouting out of windows. I almost felt like a cave man.

Oh well, hopefully Ring service will soon be restored.

(I always have to add with my blogs that I am joking. My tongue is well and truly in my cheek. Yes it happened. But I am not serious in my comments. Otherwise people get so stressed out in the comments.)

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Capacity Overload

There are times in life we all reach our limit. Moments when we say, ‘enough is enough.’ That point when we can go no farther. But… I never expected it to be part way through a McDonald’s meal. Not in my wildest dream did I imagine that.

Picture the scene. A Big Mac and fries. Helping Mary finish her chicken wrap. Plus, here’s the kicker. They had accidentally added an extra Big Mac in the bag. Obviously too late to go back and return it. Besides, last time we got a McDonald’s they made a mistake. This is obviously a belated apology. Part way through my part of the chicken wrap. Sorry the McChicken wrap. Is that the right term? I stopped. I was full up.

I have paused here for you all to faint, shout out, run around. Go to the foot of your stairs. Not eat all of a McDonald’s! What has happened to the world? Doesn’t your stomach have a special compartment for junk food? Sorry McD. It’s right next to the pudding shelf, isn’t it? That place that always has room for a pudding, even after a big meal.

But no! I was full up. Am I ill? Well obviously yes. I mean extra ill. Something has gone very wrong. Normal service will be resumed as soon as possible.

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A Request

This is a message from a Producer at ITV News:

Hello, 

My name is Jonathan Wald, I work for ITV News and I’m looking for your help with a special report I am working on about how there is not enough accessible homes for people with disabilities.

I am looking to film and interview two people in the following 2 different kinds of situations related to insufficient accessible housing:-

1.) Someone who is in a home that is clearly, visibly inappropriate for the needs caused by their disability

2.) Someone else who is forced to remain in a hospital or nursing home because there isn’t any accessible housing available for them to move into

We would like to interview these two people in the above settings on Wednesday or Thursday next week.

The report would be broadcast on ITV’s national news the following week beginning Monday September 19th.

Please can you email me on jonathan.wald@itn.co.uk or call me on 07771947805 if you would like to take part and you think one of the above descriptions applies to me.

Many thanks

Jonathan

Ten tips and hints

These are a list of ten things I have found make life easier when you are mobility limited:

1/ Litter picker/grab sticks. I can’t over state how useful I find these. Do look for ones that have a decent grip. They are still limited by two things, your strength, and the weight of what you can pick up. But they are great to get smaller things that are out of your reach. However much it may sound fun, it’s no fun having to keep asking people to fetch everything for you. If you can grab what is just out of reach, that is really great. I have a piece of string on the top of mine so it can hook onto another thing I have lots of, hooks.

One example, this one folds:
https://www.amazon.co.uk/gp/product/B083QY1LXP/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

2/ Hooks, I have several Velcro strapped hooks around my bed and on the wheelchair. As mentioned in the 1st point, a litter picker is on one.  There are so many available. I have only shown one.

3/ Panniers, I have several of these, all different types. Two on my bed and two on the wheelchair. They hold medicine, remotes, snacks, papers, magazines, pens etc.

4/ Sleep headphones, these are a soft headband with built in headphones. I can lie down and listen to music or watch films. Mine are wireless ones, they last a few hours per charge.

These are the ones I use:
https://www.amazon.co.uk/gp/product/B095NRZGPB/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

5/ Multi USB charger unit, this is most useful in nursing homes, but also good at home. As I have a lot of technology it enables me to charge many USB and Apple devices at the same time, from one 3 pin UK plug. They have different outputs.

The one I have no longer exists. Here is one of many now available:
https://www.amazon.co.uk/Charger-IWAVION-Charging-Adapter-Samsung-White/dp/B08F7RFV39/ref=sr_1_2_sspa?crid=2AER9JZ0D9UIQ&keywords=multi+usb+charger&qid=1661403113&sprefix=multi+usb%2Caps%2C61&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzSDlERks3VzE0WklEJmVuY3J5cHRlZElkPUEwNDY5ODY0MVhFR0U0QjhVNFowViZlbmNyeXB0ZWRBZElkPUExMDMxMjQ2MkNVWlE1QU9QSDA0MiZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=

6/ A computer tablet stand, I have a heavy based, goose necked stand and it is so useful. I can easily view or operate my tablet without having to hold it or balance it on my knee. But there are many variants. Ones that attach to the bed or that sit across your knee.

This looks the nearest to the one I have (no longer available):
https://www.amazon.co.uk/dp/B08S791TMP/ref=sspa_dk_detail_2?ie=UTF8&psc=1&pd_rd_i=&pd_rd_i=B08S791TMPp13NParams&s=computers&sp_csd=d2lkZ2V0TmFtZT1zcF9kZXRhaWw

7/ Water bottle holders, I have had to try several of these to find the one that works on my wheelchair as every chair is different.

Mine is similar to this:
https://www.amazon.co.uk/AOBETAK-Rotation-Bicycles-Mountain-Wheelchair/dp/B07F32NWZ9/ref=sr_1_9?crid=2RJE9YB8RH6ND&keywords=bottle+holder+bike&qid=1661403419&sprefix=bottle+holder%2Caps%2C61&sr=8-9

8/ A Trabasac tray. The reason being that it doubles as a bag. Plus, it has a variety of clips so that it can attach to my wheelchair. I find my lap is not level, except when my chair is reclined. So, the tray is only secure when clipped. The edges of the tray are raised so that things stay on it.

This is the Trabasac Curve. But there are a variety of sizes/types. Look at them all if you are interested:
https://www.amazon.co.uk/Trabasack-Curve-Wheelchair-Inclusive-Universal/dp/B00BAQXNCK/ref=d_pd_sbs_sccl_2_1/257-6152039-0943466?pd_rd_w=7jAcj&content-id=amzn1.sym.7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_p=7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_r=6R47J47PPKGJKRB87A9S&pd_rd_wg=AOUG6&pd_rd_r=38f65032-b80d-449b-947b-27c85adaab3c&pd_rd_i=B00BAQXNCK&psc=1

9/ A metal urine bottle hanger. I am in my profiling bed a lot. So I need urine bottles to hand. Having them safe and secure on a hanger is brilliant.

This is the one I use:
https://www.amazon.co.uk/URINE-BOTTLE-HOLDER-Urinal-carrier/dp/B01CR5CCNI/ref=sr_1_57?crid=5WB9SSB6IMP6&keywords=urine+bottle+hanger&qid=1661403742&sprefix=urine+bottle+hanger%2Caps%2C59&sr=8-57

10/ Regarding urine bottles. When I need to go out in my wheelchair, I find urine bottles difficult to use. So, I use Conveens. See my separate blog about these: ‘Not so public convenience.’ On my site https://howcaring.home.blog/ I’m sorry there doesn’t seem to be a female equivalent.

These are Conveens. they are prescribed by your GP.
https://products.coloplast.co.uk/coloplast/continence-care/conveen/conveen-optima/conveen-optima-sheath-standard-length/

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Fame at last

The Mail on Sunday picked up on my article, ‘Enabled by your environment.’ I was interviewed about it and this article is the result. They have given it a very distorted spin. But heh, what do you expect from the national press.

https://www.dailymail.co.uk/health/article-11087385/Disabled-Britons-forced-opposite-end-UK-shortage-accessible-properties.html

A Bit of Support

I have a confession to make. I have had a bit of support. No, it’s not a girdle, nor a truss. Obviously I don’t need those. I’m surprised your mind went to such things.

The support I am talking about, came from Advent Advocacy. Specifically, Joanne, I can actually give you her real name, whoopee. I feel like I should make one up, just for fun. I’ve gotten so use to having to make up names.

JoJo, sorry, Joanne has been incredible. Let me just start up my Thesaurus. Otherwise, I’m gonna get boring saying how brilliant and fantastic she is.

We needed help with a care related issue and Joanne was awesome. Glad I started up the Thesaurus. She visited us at home and after spending time getting to know us and our situation, understood what would help. She is empathetic, caring and knowledgeable. The most amazing thing is that she doesn’t even cover Hartlepool. The request for advocacy help was accidentally sent to her (not by us, I hasten to add). She saw that we had been waiting for support for weeks and stepped in to help. Going above and beyond her normal remit, is just one thing that makes her stand out.

Superwoman, oh I forgot I can use her real name. We first met Joanne at a time when we didn’t know which way was up. Having turned my wheelchair the right way up. Why do feel the need to explain that is a joke? Oh yes, because we live in an age where some people think the earth is flat.

Joanne has a way about her that cuts through the… rubbish and helped us see the issues. I will not go into the details, that isn’t the point of this blog. She transformed the situation. Her knowledge and skill were essential. But it comes with understanding, empathy and compassion. At the end of the day, you can train someone with knowledge. Only character brings the rest.

Mary and I want to wholeheartedly thank Joanne. It is a heartfelt thanks and we know that she must be a blessing to many.

A Special Thanks

‘A special thanks goes to…’

I feel like one of those award show hosts. But without the false tan, bleached teeth and the big hair. Well without much hair at all really. Let’s not talk about teeth. Back to the thanks:

‘A special thanks goes to….’

 ‘The award for the best… goes to…’

Hey, maybe I should be an awards host. I’m a natural. I can just see me up front, in a big Hollywood venue. Will they have a ramp for the wheelchair? Or would I need to present from in front of the audience, just by the orchestra pit? I know, will start off with:

‘Welcome to the 2022 awards for the best…’

Everyone will be looking around asking, ‘who’s that speaking?’

‘Where is that deep and luscious voice coming from?’

‘Is that James Earl Jones’

‘No, don’t be silly, it’s Morgan Freeman.’

Anyway, enough of the asides. I am writing this blog as a big thank you. A very big thank you. A special thanks to the two social workers from Hartlepool Borough Council, who have helped Mary and I these last few months. I would love to name them, but I am told I can’t and besides, they know who they are. Thank you El and Karla, oops, no, just made those names up.

The two of them have helped us sort out care provision at a really difficult time. They have demonstrated empathy, understanding, care and patience. I cannot praise them highly enough. Anyone who has read my blogs regularly will know that I believe people who care for people are the most valuable people in the world. Does that remind you of a Barbara Streisand song? ‘People who need people, are the…’ Totally different meaning of course. But give me the whiff of a song and I’m off.

Back to these two amazing and wonderful social workers. Along with all those who care for and help others. We had a brilliant advocate as well. Not Advocaat that’s a cream liqueur. They should be recognised as the best and paid the most. People who care for people, not cream liqueurs. Instead, we as a country and indeed, the world recognises them least. We value money, fame and entertainment over those who care for people. What an upside-down world we live in.

I know this, when an MP, banker, millionaire financier or the PM is ill. They won’t be calling on their brokers, personal assistants or advisors to care for them. However highly they pay them. They will turn to health workers, carers and those at the sharp end of care. I am pleased to say that when we have needed to do that, we have found help and support.

As I round off my awards ceremony, I repeat my special thanks to these two wonderful social workers from Hartlepool Borough Council. Well done you are brilliant people, and we really value you. Everyone who can stand, up on your feet for a rousing applause.

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Habinteg Post

Our policy work is central to our strategy to improve housing options for disabled & older people. 👉 https://lnkd.in/dCwhAQvw

As part of that work we produce evidence – like our Forecast for Accessible Homes – to influence policy & support best practice in accessible housing.

#ukhousing #property #accessiblehousing

My Article Published

Inside Housing have published my article/blog Enabled by your environment. It has triggered interest from a national newspaper. They wrote the headline.

https://www.insidehousing.co.uk/comment/comment/i-had-to-move-to-the-north-east-to-get-an-accessible-home-we-need-to-provide-more-housing-for-people-with-disabilities-76113

You can register free to read the full article.

Wheelchair Etiquette

Well, anyone who knows me, will realise that I am 100% serious. I never have my tongue in my cheek, nor write farcical blogs. Now we’ve established that. Let me outline an important issue that has come to my attention. I was reading on a wheelie site about how to greet a fellow wheelie when out and about.

Now this is an issue that has given me must angst. I never know what’s right. For anyone who is not a wheelchair user, picture the scene. You are out in your wheelchair. You may be in a powered wheelchair. Or being pushed. You may even be self-propelling. Hold on, the motive force is irrelevant. Then you see a wheelchair coming the other way. What do you do? In between feeling awkward and panicking that is.

If you were on your feet and walking along. You could do what most people in that situation do. Pretend your eye level is too high to notice the wheelchair. We are literally out of your sightline. Job done; embarrassing situation averted. No need to think of a suitable reaction. Well, I can’t do that. Even if I wanted to. I am looking straight at the oncoming stranger. They just happen to also be in a wheelchair. Is that some kind of kinship? An automatic bond. A fellowship of the wheel? All friends together. United in our common limitations? How do I react? What do I say?

So, a wheelchair is heading towards me. I needed to repeat that as it was so long ago I last mentioned it. Who is in it? Does it matter anyway? If it was a famous person, or Royalty. The Queen has a fancy golf cart now. So, it could be her, out for a spin in another new bit of equipment. Maybe it’s someone I know. Scrub that. I don’t know anyone local to me in a wheelchair. A stranger is wheeling towards me at speed. Actually, that’s unlikely. They are probably wheeling towards me slowly. I have lots of time to consider my actions. Oh, the angst.

Have you got the scene in your mind? Let me mess that up and add some extra detail. The most likely time I might meet a fellow wheelie is on a wide and straight promenade. As in alongside a beach. Now you are all in the South of France or Spain, sun beating down. Cool off a bit. This is the Northeast of England.

Back to reality. I am wheeling slowly towards a fellow wheelie along the promenade. This is sounding like a Hollywood movie. You’re picturing a romantic moment of meeting. The music swelling. But that is not the right image at all. I am approaching a complete stranger. Unless it is the Queen. I feel like I know her. She’s on my stamps and money. No, its not the queen. Let’s not be silly.

Do I smile, pull a face, ignore them, frown, scowl, say something? Hang on a second, who said that? I am British and an introvert to boot. Maybe there is a secret greeting for two wheelchair users. Are we like the Masons? Do we have a coded wheel bump, or twirl of the chairs that we are meant to do? Is there just a double right eyed wink? That could be tricky if you get it wrong. Just imagine you all take me literally and start doing that. I really need to know what to do.

Answers on a postcard to, ‘WheelsUp, Confused Row, Bea MY M8

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Above and Beyond

There are times when people do things that are above and beyond. They go out of their way to help you. Yesterday, Kelly from Persimmon Customer Care did just that.

If you read my blogs regularly, you’ll know I spend most of my time in a hospital type bed. What you may not know is its position. Right next to a double window. Late the night before last, the little plastic button that enables it to latch/open/close, broke. As our house is still under warranty, I emailed Kelly at Persimmon asking if she could arrange for it to be fixed. I explained that it was the one by my bed and that I am in that bed most of the time. The weather has been very variable. As wind/rain can blow straight in and onto my bed, it needs to be able to close. But it also needs to be able to open on these hot days.

I got an email from Kelly pretty early yesterday morning to say that she had contacted BPS (the window supplier/manufacturer/fitter) asking them to fix it. That’s the proper procedure in this case. I got a text from BPS about 20 mins later saying they would be out in 21 days to repair it!!

I phoned BPS and explained that it was the window by my bed, and I am disabled, and all the above about weather. Two hours later I got another text from BPS with an improved timescale, 14 days!!

I emailed Kelly back and told her all this and asked if anyone from Persimmon could help more quickly. She phoned me back within the hour. Kelly told me she’d organised for one of their customer care operatives, Ross, to come round that afternoon and fix it. When I thanked her, she said, that she couldn’t leave me by a window that doesn’t shut. Ross turned up about 3pm and replaced the handle. I realise that is above and beyond what they had to do. Persimmon could have left it to BPS. But Kelly recognised that it was a very real issue for me. She personally found a way to sort it very fast. I cannot commend her highly enough for that. Hence writing this blog, just to highlight what she did.

This is an important issue

We don’t think it’s right that only one new accessible home is planned for every 15 people over 65 by 2030. That’s why we could use your support in calling on the Government to establish the accessible & adaptable standard – Building Regs M4 (Cat 2) – as the baseline for all new homes. (Although this is UK, I am sure there are issues worldwide)

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No Fingered Typing

I have a confession to make. Don’t get too excited. It’s not that. Or that. I never learnt to type. It’s not that either.

When I was doing my Open University course in English Lit and a Diploma in Creative Writing. I know, it is incredible that I am actually qualified to write. Who knew, not me. At risk of highly annoying any OU tutors who may be reading this; as if they would be reading it. They have given up on me years ago. I had better get back to the point. When I was taking my OU degree and diploma, don’t forget that. I was disabled and limited. Not as much as now, but significantly. Here’s an aside for anyone thinking of studying who is disabled. There are grants available to help you get any equipment you need to study. Which meant that when I started to study, they realised I was typing with two fingers and gave me a two fingered key board. I could just leave it at that and there will be loads of people trying to buy two fingered key boards. This is the problem with social media. If something is written here; it must be true. So let me be very clear; I was joking. There are no two fingered keyboards. Unless they sell them in the shop with the striped paint.

I hope that cleared up any confusion. In reality there will still be people who believe that there are two fingered key boards. Nothing I say will convince them otherwise.

I really must keep on topic. So the real thing that the OU disability grant gave me was voice recognition software. At the time that was Dragon Naturally Speaking. It enabled me to write and even use my PC using just my voice. Now you are all thinking, ‘so what, we can do that with Siri, Google and Word uncle Tom Cobbly and all.’ Yes, but this was a few years ago. Before every device chatted to you, morning, noon and night. Before you could say, ‘Siri, take a letter.’ And she would say, ‘what?’ Or you could click on a microphone button in Word and an icon sit pulsing, waiting for you to talk. This was even before you could have an argument with Alexa.

These days, I have Word. With that pulsating microphone button. The one problem I find… stage fright. It’s like you have walked out onto a giant stage. The audience is all staring at you. You walk up to the microphone ready to sing. Everything goes quiet. What do you say? Obviously I burst into song. Sorry, I mean that I start dictating amazing literature. The next War and Peace. Booker Prize here I come.

It is all very confusing. People assume because I blog, that I sit typing away for hours on end. In fact I chat to my PC for short periods at a time. Then it talks back, I tell it to be quiet, we eventually get an amazing blog together. Not this one obviously. All my secrets are now out in the open. I can’t type and I like talking to technology; who knew?

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In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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