Christmas cheer? I’d love to see less ableism.

I spotted this damaged Christmas tree ornament in TKMaxx.
There was another broken one, in the form of an owl with an unintentionally heart-shaped hole in its chest. I couldn’t bear to photograph it.

This is neither a festive post nor a beautifully crafted one. You have been warned.

If anyone feels personally judged or attacked by this post, I would encourage you to sit with it. Remember this is a systemic, collective issue and it can be changed.

1. The pandemic is still going.

The pandemic is not over. Not even close. In the UK and worldwide people are still dying every day. Over two million people in the UK (let alone the world) have Long Covid. This means symptoms that continue beyond 12 weeks, and in some cases over 2.5 years. (You can end up with Long Covid from a very mild infection, not just from a transmission in the early days pre-vaccinations. ). These symptoms may be such that a person’s capacity to go about their daily life is impaired. They may have to give up work. Do you understand what it means when a person is no longer able to earn a living in this society?

2. Perhaps you have a trust fund?

Let’s cut to the chase. I may have missed something. It may be that the majority of people in the world, the UK especially, are privately wealthy and do not care if they, or someone close to them, can’t work again. I can’t help thinking that this doesn’t add up, but hey.

3. ‘But it’s just like a cold or a bit of flu, no?

Superficially perhaps. It enters the body via respiratory channels, but can affect many organs, which is why you have people experiencing chronic fatigue (remember how people with ME/CFS were gaslighted for so long?), heart rate changes, breathlessness, anxiety, cognitive deficits – do I need to say more? And a person in prevous good health could experience this, not just ‘Oh did they have existing conditions oh well there you are then nothing to do with me I am healthy.’ (Vaccinations have helped enormously, but they don’t keep it away completely.)

4. The great leveller?

The pandemic taught non-disabled people what it was like for those confined to their homes or only able to travel with difficulty and extensive planning. All those who could – (what have been called middle class workers) – took their work online. Events – (and there are a potentially lot of those in a therapist’s life like mine, for example) – went online. And it was great! You lost some of the networking capacity for sure, but it made a more equal playing field. Neurodivergent people, disabled and chronically ill people, people struggling with their mental health, those on lower incomes who can’t always get childcare, etc – lots of those people could now attend trainings and meetings. And it kept everyone safer from the virus by removing travel from the equation.

5. Not all benefited from this ‘levelling up’, however.

Anyone doing labour that cannot be done on screen had to keep on going to work in person. That’s a lot of people cleaning, delivering, processing food, working on transport, working in retail, building and of course healthcare. All of them keeping our society going. Without those workers we would have no society. Instead of treating those workers with respect (eg free masks, priority vaccinations etc), our administration played games with the entire population. 

6. Please remember the lies you were fed.

As well as being regularly and deliberately confused about what was happening via the media, with ‘bubbles’, endlessly shifting ‘tiers’ and u-turns (remember Christmas 2020), we were left with an idea that Covid-19 was some kind of naughty enemy of the British Empire that could be dealt with by using infantile language about ‘moonshots’, and maybe a really embarrassing gun battle on the Thames (sounds familiar?) with people dressed as doctors hurling custard pies at people in racist-looking virus costumes.

We didn’t quite get to ‘freedom fries’ but the F word was used, as if the doughty brits were really going to stick it to a virus. And the people in charge who pushed it out were merrily attending parties and going on holiday all along, while ordinary people died in their hundreds of thousands. People were being literally suffocated to death by misinformation, a disproportionate number of them People of Colour. 

7 ‘Then why isn’t everyone masking up wherever possible?

We have been told it’s over when it’s not. Even though it’s winter now and wouldn’t it be great not to catch all the other seasonal viruses? Every time I go on public transport in London I am one of the very few people wearing a mask. The other week, on a very crowded delayed Overground train, I was lucky enough to get a seat and therefore have a close up view of someone’s workplace pass clipped to their belt. An actual doctor working at an actual hospital – in a soupy rush hour crowd – not wearing a mask. And yes, I hear stories of hospitals and clinics not enforcing masks and staff not wearing them. (Not all, thankfully.)

8 ‘Hold on, not everyone is able to wear a mask!’

Yes. Some people have a sensory or trauma response, or a respiratory one, which means that mask wearing is acutely stressful for them and just not possible. So all the more reason for everyone else to wear one to boost everyone’s protection and allow those who can’t to live a reasonable life.

And yes masks can be pretty grim if you’re wearing one all day. (Think about the doctors and nurses with dented bruised faces.) I see why many people would be willing to take the risk – I really do see this. And yes I can see why that doctor on the overground wasn’t wearing one, as maybe he had been wearing one all day. But even so – how can we do better?

9 ‘But not everyone can afford masks, esp N95 ones!’

Yes, I agree. imagine if the government gave out masks instead of wasting millions – billions – on mysterious deals that benefit only the very few. Masks for all sounds a lot more worth it, doesn’t it? This would never happen because it might start showing people how they have been corralled into a ‘me first’ space, even while having what they have stolen from them in broad daylight.

10. ‘So why are so many events going back to in-person only, then?’

Good question! It’s like everyone’s forgotten what ‘access’ means. It is directly ableist, with all the knowledge and resources we have now, not to make your seminar/conference event a hybrid one. [As with this entire post, someone will remind me of exceptions to this. There are always exceptions.]

Unfortunately plenty of ableism goes on even in online-only events. This especially confounds me when I see it in the therapist/practitioner world. I have online access needs myself and I admit that I have become a bit of a professional annoyance to some events organisers.

11 ‘Lighten up, will you, lefty killjoy!’

No, I won’t. But I don’t want anyone to stop going to gigs, pubs, theatres, parties and on holiday either! They are a fundamental part of life for many people. But if we all did a little bit to make these things more accessible for everyone, life would be better, no? 

PSA: Until we as a society learn to look after each other better, we will remain in thrall to toxic values that are dragging us all down. Do I really need to name these values? Toryism, neoliberalism, Thatcherism and of course another F word. Of course, many brown and black and trans and queer and working class – and of course disabled – folks have been shouting about this for literally ever.

It’s not that we shouldn’t look after ourselves too, but if we remember that our actions have consequences, and if we pull up everyone behind us, then we all benefit. I’m not sure why that’s so hard to understand. We have all been encouraged to sink into an intoxicating swamp of individualised wellness. Keep working on yourself as the problem, so that you don’t see the structural issues which of course no one person can change alone and will just make you feel worse.

Best order another scented candle. But none of that will get us out of this.

12. Lefty Queers, why aren’t you talking about this?

This is part of the reason for this post. I am feeling increasingly heartbroken when attending queer events where no one is masked (or seeing pictures/videos of them online), despite this community having a higher than average number of disabled and vulnerable people in it, and a lower than average income. This is a community that often speaks of little else but ‘community’, but here seems to be talking the talk rather than walking the walk. Are you content to collude in exclusion?

(Despite my words above, I am also cynical about some usage of ‘community’ as a carry-all badge of goodness and sincerity. It often involves ingroups and outgroups which are not always acknowledged. However, this is not the post for unpacking my thoughts on this because, trust me, we would be here all week.)

13(a) Please read this important article:

Please read this piece by queer disabled activist Leah Lakshmi Piepzna-Samarasinha: Abled-Bodied Leftists Cannot Abandon Disabled Solidarity to “Move On” From COVID. I’ve been sharing it around the place and am baffled by the relative lack of engagement. There are plenty disabled folks who have been effectively written out of in-person engagement by this ongoing ableism.

13(b) And this one:

The pandemic isn’t over, and queer people shouldn’t be acting like it is by Dev Ramsawakh. Someone told me about it earlier today.

I’ll say again, if anyone feels personally judged or attacked by this post, I would encourage you to sit with it. Remember this is a systemic, collective issue and it can be changed.

14. OK I’m done

I’m tired from writing this. I will try to put some links in later on. I hope this post is at least a thought-starter for someone.

If you are still looking away in order to maintain an ‘us and them’ paradigm in terms of health and disability, please remember that however positive-thinking you are, however immune you feel to the issues here, you can still be taken from ‘us’ to ‘them’ in a heartbeat.


World Menopause Day 2019 – There’s a long way to go

It’s World Menopause Day today – 18th October 2019

If you have any interest in human welfare, and the welfare of those you love, please read.

I would love to go into detail about the results of my Queer Menopause study, (which I am about to start writing up), but in the academic world you are supposed to keep fairly quiet about everything until it’s coming out in a peer reviewed journal. At best this means likely a year’s time! And that assumes it’s going to be accepted by the journal I will be pitching it to.

So I will simply take this moment to thank everyone who participated in my study. I am very grateful to you for sharing so much on such a crucial topic.

However, it’s safe to say, from my reading online, personal experience, and conversations everywhere that menopause can have a huge impact on life. [Tip for happiness: If menopause has been easy for you, that’s great. But I’m not going to debate with you about why the system needs to change.]

The general response to menopause is a reminder that we are still living in an ageist, ableist, sexist, misogynist society.

Folks desperate for help are going to their GPs, but the response is a lottery. You may get lucky first time, or your GP may realise the limits of their knowledge and refer you on to a menopause clinic. But equally you may be dismissed, gaslighted, and lied to. You may be told ‘It’s natural, just get over it’, or fobbed off with antidepressants.

Of course, hormone treatment is not simple, and it carries health implications, but the implications of oestrogen deficiency are equally concerning. The fact that so little is truly known makes me suspect that if people took the time to look hard enough at hormone function, we would be less hung up on the gender binary, which would make a lot of us very happy, but some other folks, clearly, very upset.

PSA: hormones don’t have genders. All bodies need oestrogen and testosterone to function.

The whole thing is doubly stressful for queer/trans folks, who may end up having to do a huge amount of education work around gender and sexuality while trying to get help from the healthcare system. And the general media narrative about menopause is suffocatingly heteronormative and often incredibly infantilising. We can do better – on a number of fronts.

And if you’re in your 20s and 30s, don’t think it starts at 50 and you can forget about it for a while

Perimenopause (the phase up to when your periods stop) can start in your late 30s or earlier. My periods started to fluctuate when I was 39. Fluctuating oestrogen levels can affect mental health for years before your periods stop.

The effects of menopause can be inherited, so it’s worth finding out, if you can, how your biological mother experienced it. It’s also biopsychosocial, which means, put simply, it’s constructed within the body, the mind, and the world outside. If older women/AFAB (Assigned Female At Birth) folks were respected in society, I have no doubt the experience would not be as bad.

Things are starting to change

Workplace policies are being created, and campaigners are pushing for changes in the law. I would like being in menopause to be a protected identity. At worst it disables people to the point where they cannot work due to physical and mental ill health, and they lose relationships and careers. I think everyone should have the possibility of subsidised time off work. I would also like to see menopause pensions to cover this too.

If you run a workplace, please think about how it could be more welcoming to folks in menopause.

If you are struggling, don’t suffer in silence

Go to your GP armed with the NICE Guidelines 2015. If they won’t help you, find one who will, or ask to be referred to a menopause clinic.

I wrote this first thing this morning. As time passes I will add some links. Thank you for reading.