Person, Woman, Man, Camera, TV.

TRIGGER WARNING: Mention of suicidal tendencies in the context of counselling/psychotherapy self assessment.

DISCLAIMER: As always, this post is entirely my own opinion and doesn’t represent the views of “The Disabled Community” as a whole. In fact, as I haven’t talked to anyone about this at all, I can’t even be sure if it reflects the views of anyone with a disability (apart from myself).

A lot has been said about Trump’s defense for bragging about his “amazing” score on the Montreal Cognitive Assessment. I’m afraid that I’m going to be adding my tuppen’th in too. In particular I want to look at it from two angles, the use of assessments in medical practice (with a focus on the AS and Mental Health side of things as these are where I have experience). The second thing I want to look at is accusations of ableism and review the way that I look at it (coming from a background of the Queer Politics movement in the 90s).

Actions vs Words

I’ve been a bit quiet again recently. It’s because I’m standing on the limit of my mental health peninsula. Life is currently a balancing act between coping with my cPTSD, social anxieties, physical health and financial difficulties after being made redundant nearly a year ago and not being eligible for assistance from the government.

My GP has been amazing over the last couple of years (we’re actually at 2 1/2 years now since my cPTSD was triggered). And I’ve tried counselling and CBT – neither of which were able to help. We’ve tried different medications and found a group that are helping to dull the edge of my snake’s fangs. It’s a temporary workaround, an elastoplast over an arterial wound, but it’s been holding me together for a while. I’ve been living on the pretence that I just need it to manage for a little longer, just until I can get the correct treatment for my cPTSD.

Why pretence? Well, after two years and two failed attempts at counselling and CBT, I’d finally been able to get a referral to a psychologist for assessment to get psychotherapy. Of course that was just as Covid-19 started to be treated as a serious issue by Doris and his circus of mediocrity.

Last week I received a letter telling me that my assessment was cancelled due to the lockdown. There was no deferral, no reassurance, no alternative offered. Andy’s been receiving physio by phone and video call. I’ll just say that again, PHYSIOTHERAPY is being delivered remotely. One of the most tactile treatments offered by the NHS can be delivered by phone and video call. But a treatment based around TALKING can’t be?

Doris, Raaaaab, Hancock, et al (well, except Patel, because she couldn’t give a flying fig about the vulnerable) are regularly talking about how they’re aware of the mental health issues the lockdown is causing.

They’re encouraging people to contact the first line support on offer (much of it actually being delivered by charity and voluntary groups), but still haven’t addressed the huge structural failings of the system that their party has caused through a decade of underfunding and studious ignorance.

They’re right though, mental health is a huge issue and people need to be able to talk about it more openly. Thanks to the famous people who’ve stepped forward and told their stories and the groups/organisations working to raise awareness, it’s starting to happen (I’d like to take a second to shout out Aiden Hatfield who is fantastically brave, talking about MH on his YouTube channel, using his Twitter feed to send out messages of reassurance and positivity and even created a clothing range that donates to Mind!)

But awareness and talking about issues with people you can trust can’t help everyone with long term mental health illnesses. And these people are being left behind. Falling through the cracks of the system. Just as there are people like me who fall through the cracks of the benefits system.

Once again the government says one thing and doesn’t complete the actions to ensure it happens. I mean – we knew that was what we were getting with Doris – he’s always been all mouth and no trousers. But seeing it so starkly and living on the sharp end. Well, it’s another thing that doesn’t help someone struggling with their mental health.

Move to the back of the bus please.

Rather than marking accessible seats on buses as “for people with disabilities/elderly” how about we label them as for people with limited mobility? 
What’s the difference I hear you ask?
Disability is a huge umbrella term covering a multitude of issues that affect the person’s ability to complete daily tasks over a long period of time. Not everyone with a disability identifies as disabled. And there are a lot of people who don’t fall under the term disabled who have limited mobility, for example someone with a fracture or other short term injury.

“What does it matter?” “Why are you moaning about it now?” “Bloody SJWs and their bloody causes.” I know, I know, it’s political correctness gone mad. But it isn’t. As I’ve mentioned before, AS is worst in the morning. So much so that I try to head for those accessible seats. By the afternoon and evening I’m usually feeling much more mobile so I can easily head to the back. 

That (theoretically) should work out quite well as most of the elderly passengers who often use those seats don’t get free travel until after 9am. But over the last few days (end of last week and Monday/Tuesday) those seats have been taken by (and I’m not trying to stereotype here, this is a straightforward observation) young, apparently fully able-bodied (they had no problems getting onto the bus, walking to the seat or sitting down) women. With handbags to take up the second seat.
Tired, achy and stiff, I have to fight my way down to a seat further down the bus. Because I get on quite early on the route, it means that I end up in the window seat, meaning that getting off is a struggle. Fighting like a tortoise on its back to stand up. As I mentioned, in the afternoon it’s fine for me, but not so much those who get worse through the day.

So, I suppose there’s just one thing that I can ask, and I’m just repeating the mantra of bus drivers all over the country. “If you can, move to the back of the bus. Please?”

***This post was written on my mobile with fewer options to neaten. I will correct it when I get full WordPress access.***

Body Beautiful

This is a post that I’ve tried to write three or four times over the last year. It’s a difficult one to cover as it’s opening up more than I usually do. This is not however a post asking for sympathy, just a way to explain a bit about some of the “invisible” effects of AS.

A couple of my friends have posted on Facebook about body image in the gay community. It’s one of the things that I don’t think gets talked about enough, actually men’s body image isn’t talked about in general. We talk about the impossibly high standards set for women (and we absolutely should, they’re often ridiculous) but men are kind of left out of the discussion.

Disability Top Trumps (Belated #keepinitreal Day 5)

I’ve heard the phrase “Disability Top Trumps” quite a lot recently and it confused me for a while. I didn’t understand how someone could compare one condition with another. I was also confused by the idea of comparing one person’s experience with someone else’s. Different people cope with the same stimulus in different ways.

That’s something that I try to avoid in my posts. I really hope that I’m successful in it, and I want people to know that this blog is about my personal experience. Having joined a few AS support groups and forums etc… I know that I’m very lucky. I’m on the right treatment and have built a number of coping mechanisms (many of them without even realising that they’re coping mechanisms).

There are a lot of people with AS who can’t work. That doesn’t make them lazy, or me any better than they are. It just means that they’re affected differently. As I’ve been talking about in my #keepinitreal posts, a lot of people with invisible illnesses will hide the challenges – especially on social media. In fact, I’d say that pretty much everyone tries to show their best side.

Let It (Pokemon) Go!

I’ve seen this picture by Pawel Kuczynski on Facebook a few times recently, he’s an amazing artist and I really love the concepts that he covers. It’s part of a series of images drawn as a satire on the modern world. Satire’s great, and to be honest it’s one of the things that has helped me through the complete shit-storm that has been 2016.

But satire is a form of comedy, it’s supposed to be a mirror on the world that makes you think. And I think that this does. But do you know what I don’t think Mr Kuczynski was trying to do was to create art that people would use to make themselves seem or feel better than others. I have seen people posting this because they’re not one of the “sheeple” that have joined in with the worldwide phenomenon that has been Pokemon Go!, the people who think that they’re somehow better than others because they’re not following the herd.

That’s My Spoon.

When I was looking for more information on the Spoon Theory I found out that, what I thought was a nice analogy and cute story, was actually more contentious than putting the milk in first. (Just to clarify, that’s not contentious, it’s just wrong. Listen to George Orwell, he knew that back in 1945!)

There are (believe it or not) discussions about who’s “allowed” to use the Spoon Theory. Everyone agrees that it’s OK for people with Lupus to use it, Christine Miserandino herself has Lupus. Because Lupus is an autoimmune disease almost everyone agrees that they’re covered. Most people are fine with it being used to describe the fatigue symptoms that a lot of people with chronic physical disabilities experience.

Defining Disability.

Today is World Ankylosing Spondylitis Awareness Day and I’ve been thinking a lot about disability and defining what it means recently. The Equality Act 2010 uses “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” But this is a very generic definition. There’s a more detailed document available to download, from the .gov.uk website. But I decided to look at how AS affects my day to day activities and see if I think that it has a substantial effect on my life.

The usual caveat applies here. This is entirely my (very) subjective experience. There are people who have it much worse than me, and people who live with AS without any noticeable effects. This post isn’t supposed to reduce anyone’s experience, or belittle them. We all have different thresholds for pain and discomfort and it’s vital that we recognise this in each other.

But on to my definition. Firstly we have to think about day to day activities. What would be a day to day activity? Well how about getting dressed? First thing in the morning my spine is rather stiff, moving to bend over or twist around is quite difficult and painful. This means that I have to contort myself to be able to do simple things like putting on socks (that’s done behind my back with my foot resting against my bum, leaning against the bed) or tying my shoes (second step on the stairs, doing a kind of lunge).