Out Of Order

You might remember two of my earlier blog posts if you're a regular reader; Hobnobs in Hiding part 1 and part 2 are two of my more popular posts. If you've never read those or you'd just like a refresher then:

Hobnobs in Hiding Pt.1 is here

Hobnobs in Hiding Pt.2 is here

Those posts contain detail of my early diabetic life through school, my struggles to come to terms with my diabetes and the extraordinary lengths which I went to, to hide my condition.

Why am I revisiting those posts? Well, back to the present day, you may have noticed some controversy on Twitter surrounding a very tiny newspaper piece which was sent in by an anonymous reader. Liana tweeted a photo of the offending article but if you haven't seen it, it looks like this:

Alongside many others, I expressed my displeasure at using column inches for such a stigma breeding opinion. The Metro published replies to that opinion and that is perhaps some saving grace for them. However, should it have been given the time of day in the first instance? We can't assume readers pick up and read The Metro on consecutive days to hear both sides of the "argument" - Three responded to the offending comment.

Not that there is an argument to be had or any kind of debate, really. I strongly believe that anybody should be allowed to treat their illness in a public place when necessary but, as a Type 1 Diabetic, I am only going to write about Type 1 Diabetes in this post and the incredible dangers of causing people like me to hide their diabetes.

It is only relatively recently that I gained the confidence to talk openly about my diabetes and even more recently that I have gained the confidence to do diabetes "stuff" in public. Many have simply bitten the bullet and never hidden their diabetes, public injecting and blood glucose checking has never caused them any anxiety and they just crack on with things. Others have always had a problem in that regard and, to this day, should I need to inject in public rather than use an insulin pump I would have anxieties over the process, being watched and being judged. Reading through the Twitter threads following the Metro controversy, it became apparent that some are going through what I did in the 1980s and what I still would be going though over public injecting. 

Bathrooms, toilets, the WC, whatever your preferred term, appear to be the go-to place for many to hide away to do their diabetes necessities. Some even recalled incidents of being told or asked to use the bathroom to check their BG or administer a bolus - Hence the image used for this post. The bathroom might not be out of order but demanding that a diabetic use one to inject absolutely is!

Nobody with diabetes should feel ashamed to have the condition. I doubt that many of the diagnosed woke up one day and decided it would be cool to be a diabetic and actively tried to make it happen. Millions of people have diabetes of various types. It is incredibly common. So, why are we being shamed, stigmatised and made to feel like second class citizens?

The media.

Society still takes on board a lot of media influence. That might be TV, Internet or "newspapers" such as The Metro. Influence isn't as difficult as you might imagine. A few carefully chosen words and images can cause many to act and think in the most horrendous of ways. Sensationalism sells much copy, too. Could that be the reason why The Metro published the thoughts of "Shocked" the anonymous person from Tyne and Wear. With much attention and even reader responses, the following day, I wonder just how real "Shocked" is and just how truthful their little comment actually is. The British press are well known for the somewhat bending of the truth. It sells copy, remember? 

"Shocked" suggested an injection into the hip, too. I've injected in various places but never into the hip, have you? and the lifting of the skirt to the hip? I've never worn a skirt but I can only imagine that hip exposure is easier from pulling the top of a skirt down a few inches. 

Things don't add up with this little opinion piece but that's by the by. It's published and the easily influenced may feel the need to verbalise how shocked they are should they see a diabetic doing what they need to do in a public place. 

A person may then neglect to inject, pump, check their BG, flash a sensor or check their CGM in public from then on. Purposefully neglecting their T1D management, conditioning themselves to hiding it and potentially causing complications issues in the long run, hypo issues in the immediate term. A person who didn't ask to be a diabetic and who is just trying to manage their chronic illness to stay alive and well.

We talk about language in diabetes a lot. Sometimes, that's very valid. Sometimes, not really. In this case and in every stigmatising piece published or broadcast by media, I firmly believe it needs to be called out and corrected in the loudest ways from the most senior people working as advocates. Stigma and the discrimination it breeds is absolutely out of order. 

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Peer Judgement

I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.

Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.

The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.

"He's clearly not using the technology correctly..."

"Perhaps his grocery bill would be lower if..."

"The truth hurts" - A personal favourite of the peer judges.

Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.

I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.

This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:

"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"

I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.

What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.

Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.

It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Stop Diabetes Stigma! But How?

"Stigma" is frequently heard in reference to Diabetes, especially in social media circles. Sometimes, an image is tweeted in all it's horrifyingly inaccurate and stigmatising glory. It doesn't take very long for the community, be it DOC, GBDoc or otherwise to pick up on such tweets before a torrent of strongly worded replies are sent. Often, the stigmatising tweets are recycled or edited slightly to suit the agenda of the tweeter. In my four years in Diabetes Twitter, I've seen that happen several times. The 'Ice cream cone for a leg' image has certainly been knocking around for a while and often resurfaces amid a fresh round of anger and vilification.

In four years a lot can happen. On the Internet and in the world of social media, MUCH can happen. Technology changes, attitudes change, we grow, we improve - don't we? I'm beginning to think that we haven't when it comes to stigma.

I remember the ice cream cone, and other such images and tweets, from the early days of my Twitter account. The outpouring of disgust and anger then was heartening as it was towards subsequent tweets of the same ilk. Now, in 2021 I'm beginning to think that we as a community of people living with diabetes, are wasting our time. Social Media is often described as "shouting into the void" and it feels very much like that when it comes to calling out stigma because, quite simply, nothing is changing in that regard.

Perhaps you're a keen advocate for people living with diabetes and you think that you're doing everything you can to stop the stigma surrounding the condition by expressing your anger, correcting the offending tweet and retweeting the message. Perhaps your friends notice your retweet and hop aboard the latest round of disgust and corrections and vents. And that feels great, you've had your say, somebody was wrong on the Internet and you told them! Back to posting black and white pictures of yourself or discussing last night's Line Of Duty. I've done that. I'll probably do it again.

You're probably understanding what I'm getting at here. The expressions of anger and correcting such stigmatising tweets are all fine and dandy but they are not changing anything. Other such "campaigning" continues but still the world is faced with the same issues; skin colour, sex, sexuality, disability, age, status, and on it goes. 

(Bizarrely we see those who are very vocal about discrimination, offer their disgust at stigma and the discrimination which they face, on one hand while talking disparagingly about skin colour, sex and age on the other. Something has been lost in the fight for equality, somewhere.)

If we, as individuals cannot stop the stigma surrounding diabetes then who can? Perhaps the charities and organisations that represent and support us!? A great idea. I thought I'd do a little searching around and I couldn't really find a great deal from the major diabetes charities in the UK in regards to the stigma faced by diabetics and the work they're doing to reduce it. I must be missing something.

I ran a poll on Twitter; Here it is 

I know, a small sample size but enough people took the time to vote and give their view here to make the results very concerning. Over a third of those voting think that charities are not doing a thing to help reduce the stigma we face. 2% think they're doing everything they can. 

Could it be that the charities are not aware of this issue? Perhaps. Perhaps they'll be tagged into a tweet for this blog and, indeed, more of the stigmatising tweets that we face in future. Then maybe we'll see some real work and real results when it comes to reducing diabetes stigma. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Diabetes Jokes

You already know where this blog is going, don't you? That's right! Easter arrived and the classic Diabetes "jokes" hit social media, as they do each and every year. Oh, how we didn't laugh again.

I understand why people try to be funny online. Sometimes, I make a funny on Twitter and it gets a lot of attention. The likes and comments feed into our need for... likes and comments? It makes us feel good to get positive attention by making others happy. Of course, what is funny to some is not funny to others. That's why we enjoy different jokes and the different comedians, I guess. 

I'm old enough to JUST remember the notorious famous comedians of the 1980s. Roy "Chubby" Brown, Jim Davidson, Bernard Manning, et al. Their routines were largely based around sexism, racism, ableism and generally being incredibly offensive. As we edged into the 90s, such characters became less popular and their acts were only seen at British seaside towns such as Blackpool. Eventually, they faded away from the public eye as comedy rapidly cleaned up its act after the turn of the millennium.

Phew! So, that's that. The nation grew up and we enjoy "smart" comedy now. We do, don't we?

Step forward Richard Osman. Much respected co-host of Pointless, host of House of Games and occasional sofa warmer on The One Show. Richard is widely regarded as a bright chap. He comes across as witty yet warm and friendly. Certainly not the sort of comedian to compare to Manning & Co. So, it was a surprise to read this tweet on Easter Sunday morning:

UPDATE: Richard deleted the above tweet and tweeted an apology here: https://twitter.com/richardosman/status/1379101305164201991?s=19

I am almost certain that Richard is not a malicious chap. The nature of the tweet isn't aggressive, in my eyes. It seems he is trying to raise a smile with a little poetic humour. 

It's not funny.

It's actually very damaging.

Richard has over one million Twitter followers and that kind of social media clout can certainly influence the thoughts of many people. That kind of ignorance can breed stigma, it can breed bullying and it can breed the discrimination many people living with diabetes face. It's ableism. Now that a well known TV personality has published this tweet and (at the time of publishing this blog) has not deleted it or offered an apology for the offence caused, it would seem only logical that young minds, ignorant minds and those who enjoy bullying and upsetting others will repeat it. Perhaps a child will say the same words to another, at school, after the Easter break? Well, Richard from the TV said it! It must be alright.

It's not alright.

Diabetes (note; I'm not referring to type here because ALL types) is recognised as a disability. It appears to be one of the last disabilities that is acceptable to use as a punchline.

It's not acceptable.

Some have replied to Richard's tweet to give him advice on this. Richard replied to a positive comment and (so far) hasn't addressed a single person who explained what the problem is. Silence.

"Lighten up!" exclaimed one .I was almost expecting a "It's only banter, mate!" reply. Obviously the "Joke Police" got a mention. Where would we be without someone referring to The Joke Police, The Thought Police, etc? Thank goodness for that particular reply! Calling out people who make discriminatory comments must have been the issue all along! 

I'll drop the sarcasm.

We all make mistakes. Only last year, I retracted a tweet which wrongly mentioned age and sex. That tweet had a lot of likes and retweets but I recognised that I was wrong to mention anything other than a particular person being a monumental idiot. That was the end of that and that's all Richard needs to do. A simple apology and tweet deletion. He'd regain the good faith of the fans he's lost and, who knows? maybe gain increased respect for acknowledging his offensive tweet and perhaps become even more loved than he was before last Sunday morning.

Joke about your own conditions and disabilities, by all means. Leave everybody else alone.

 Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Freak Like Me

 

I'm sorry about the photo. I know scary clowns are a little too scary for some! Ignore him and look at these words instead:

Disability discrimination

It's at this moment that I expect the vast majority of you to leave. That doesn't surprise me. The subject of ableism appears to turn off a good number of people. It's uncomfortable for many, as seeing disability is, as my own disabilities are.

In an earlier blog, I mentioned a time in my childhood when I first encountered hate towards disability. It was 40 years ago and I suspect if it happened today, in this country, there would have been far more serious repercussions for the perpetrator. Thankfully, things have improved for people living with a disability. I haven't experienced anything beyond schoolyard jokes (apart from one incident in a pub) and comments since... well, school. One of the latter experiences of school ableism was a time when I was referred to as a "freak". I'm pretty laid back and can sometimes turn hatred into a joke. That ability saved me from bullies on several occasions, that and having a few very tough friends. Obviously (watch it!) that was quite a while ago but that doesn't mean it has gone away.

My experiences of ableism revolve around Internet communities. I suspect that to be the case for other forms of discrimination. We hear a lot about racism directed towards sportspeople via social media. It's a massive problem, along with other forms of discrimination and hate, but I'm aware that it isn't only dished out by bigots with keyboards. The same applies for ableism. Just because I haven't experienced it in real life recently doesn't mean it isn't there and isn't happening to others frequently.

This is a tweet from my friend, Meg

Pretty nasty, huh? I don't get it. Is it funny to shout out remarks and mock strangers in the street? I know the answer, of course but what is going though the minds of people who do this? Are they living a troubled life and openly mocking a woman with a disability makes things better for them? I have so many questions. Perhaps it IS funny to them and can be spun as "banter" as many incidents of hate are. 

"I was only joking, mate!"

Oh, right. My bad. I thought I was the circus freak, doing the funnies, not you. 

It's very easy to search social media and find other instances of a similar nature. Sometimes, you don't need to search. It might just appear on your timeline because it's one of your friends who has experienced it. Support your friends/followers, please. If they are brave enough to mention their disabilities and why something is hurtful then the first thing you do is believe them. Don't tell them they're being sensitive or reply with various hashtags, sarcastically referring to "Thought policing". Don't suggest they report the tweet if they find it offensive, either. We all know Twitter aren't acting on any ableism because we, the disabled, cannot possibly be offended or stigmatised!

This has become a slightly ranty little blog and for that I make no apologies. Please:

- Do not mock or shout hurtful comments towards disabled people. This may be considered a hate crime in the UK.

- Do not joke about disability in any form unless it's YOUR OWN disability.

- Do not suggest things to "improve" a service which completely alienates people with a disability. That sort of ableist trash is all over social media. If you have an idea then consider accessibility before anything else. If somebody calls you out on it then adjust your idea or remove it. 

Why wouldn't a person do those things as a basic starting point? Perhaps they don't like a disabled person, being superior to them by noting their discriminatory nature.

I'll put my soapbox away, until next time.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE