The Right To Choose and Live

Less than a year after new laws came into force to give people in Northern Ireland access to abortion services, the Democratic Unionist Party (via a private member’s bill brought by Paul Givan) has proposed a new law to prevent abortions being carried out in cases of non-fatal disabilities.

It’s often assumed that disabled people all feel the same way about abortion: that we see it as an existential threat and proof of society’s prejudice against us. What’s often forgotten is that disabled people also have abortions – or need them, and aren’t able to access them. I have great respect for my comrades in disability activism who argue on both sides of this issue. Unlike many politicians, as disabled people, what we have in common is that we don’t only focus on disability when it’s politically convenient.

As a disabled woman, I will always be pro-choice. It’s a line in the sand for me precisely because I have had so many experiences in which my bodily autonomy has been eroded. And I think the appropriate response to people feeling they need to have an abortion because their child will be disabled is to actually create a society in which disabled people and our families are adequately supported. That’s a whole lot more useful than creating a climate of judgment around difficult choices which are not made in a social or political vacuum.

And at the end of it all, when we create that society where support is guaranteed? Where disabled people are valued as much as anyone else? Whether to have a baby, any baby, still needs to be the choice of the pregnant person, every time. Not Paul Givan’s choice, not the DUP’s choice, but the choice of the individual. I’m not suggesting we need to prioritise disabled people’s needs as a way of reducing the number of abortions, I’m saying we need to do it because it’s the right thing to do. And so is making abortion available on the same terms as in the rest of the UK.

The DUP’s pro-life attitude also appears to stop at the point of birth. It stops with supporting a Conservative government whose policies cause children to grow up in poverty – that’s more than one in four children in the UK today. And here’s another glaring statistic: nearly half the people living in poverty in the UK today are either disabled, or live with a disabled person.

Disabled people should be at the centre of conversations that affect us, and not only when we offer a politically convenient prop to ideologically motivated attacks on everyone’s rights. It has been very, very noticeable when individual politicians and political parties in Northern Ireland actually support disabled people’s rights, and engage substantively with disabled people’s organisations across a range of issues, and not just abortion.

Where ableist government policy leads, the general public follow, and none of this does a thing to challenge the ableism endemic in medical settings. It is a scandal that a staggering 59% of the people who have died from Covid-19 in England have been disabled adults. And despite the outcry and investigation that followed the revelation that autistic and learning disabled adults were being targeted by GPs and hospitals for DNRs since the pandemic began, it is still happening. Where is the pro-life brigade now? Mr. Givan?

At a fundamental, institutional level in this country, the disabled people who are already here are regarded as disposable. We are seen as acceptable collateral damage. We are presumably the same disabled people who are of enormous value to the DUP as political footballs before we are born. And that is what Paul Givan and the DUP leadership do not want to acknowledge. Their complicity in supporting a Conservative government, that has disastrously handled everything it has touched that affects disabled people, is what the DUP hope to distract you from with a debate about abortion.

Don’t fall for it.

(ABA)

Vaccinated!

No essay on pop culture or folklore for you today, but some really good news instead: I got the Covid-19 vaccine today! 

For those who don’t know, I have Crohn’s disease, Short Bowel Syndrome, and Intestinal Failure. What that basically means is that I have an auto-immune disorder which I manage with immunosuppressants, and due to complications from it I need tube-feeding. Collectively these and other factors put me at much higher risk than the average person regarding Covid-19. 

I hugged my mum for the last time on 12th March last year. I haven’t been on a bus, or been able to attend a medical clinic without considerable precautions, since the middle of that month, and Remco hasn’t been to his workplace in person. I haven’t been into a shop since 29th March 2020, nor can I visit a bank, library or post office, or anyone else’s house. The only people in our house since we began shielding that day have been medical staff, and we’ve relied on the kindness of neighbours, as well as the support of my medical team, in order to cope. 

In short, despite enjoying considerable privilege compared with people who’ve had no choice but to attend work in person throughout the pandemic, we’ve had a terribly hard, lonely year. It was particularly tough when we learned that I wasn’t allowed the Pfizer-BioNTech vaccine, due to my history of anaphylaxis (severe allergic reaction), and when I got a call from the hospital a couple of weeks ago to invite me for vaccination, unfortunately it was the only vaccine they had, so we were looking at another wait for either them or our GP to get supplies of the AstraZeneca vaccine. On my GP’s website I saw that they were hoping to vaccine CEV (Clinically Extremely Vulnerable) people next week. 

This afternoon, just after 5, I got an unexpected call from my GP. They had one dose of the vaccine left, and as I literally live round the corner from the surgery and they didn’t want that dose to go to waste, they called me first. They asked when I last had my immunosuppressant, and as I’m right at the midpoint between doses, they felt secure that this would not conflict with the vaccine.¬†They said it’s not often they get to call people with something that makes them happy! I masked up and was there within five minutes.¬†

They went through the questionnaire with me, and had me check the list of vaccine components to confirm none of my allergens was on there. I would say that anyone concerned about their specific health situation and the vaccine can be reassured by how very thorough they’re being. Then I got the vaccination.

So, I’m not going to go wild just yet – we know that the vaccine doesn’t achieve maximum efficacy until you’ve had both doses, and it’ll be another ten weeks until I get my second dose. I’m aware there are more transmissible variants of the virus out there, and my trips beyond my own front gate for exercise are cautious and seldom. We’re still waiting to learn to what extent the various vaccines prevent transmission, so there’s every reason for everyone to remain careful, whether they’re at additional risk or not. 

Hopefully though, some of the fear a lot of us have been feeling about our health can lift, and the NHS can begin to recover from the enormous strain this has put on the system, the people who work in it, and everyone who relies on it to stay alive. For now, stay safe, avoid crowds as much as you can, and mask up when you can’t! 

Shielding, But Not Shielded

The number of cases in Coronavirus has jumped by 48 in the last day. This is the highest increase of cases since 23 May.

Shielding may be officially paused since 31 July, I’m continuing to shield as a personal choice, and I want to tell you a bit about the considerations that brings.

Everything my medical team have told me suggests I continue to be at extremely high risk, and given that I spent last autumn/winter constantly in and out of hospital with fevers whose cause we never actually traced tells me I do not want to do anything that forces us to go through that again.

This was supposed to be a good time, and technically, medically, it is. We dealt with the strictures. The Ustekinumab is working probably as well as we can expect it to. I will never get this time back to use the way I was supposed to. I don’t feel good about that. But everything I have read about how Covid-19 works means I’m not prepared to expose myself to other people’s risks.

Autumn/winter really left a mark on me. When I feel cold, I have to ask Remco if he’s shivery too, because I’m still expecting that old thing, whatever it was, to come back. Not knowing what it was means we also don’t know if it ever cleared, or if it’s just lying dormant, quiet only because we stopped using the Hickman line for TPN. I’m lucky I’ve been able, so far, to get away with that.

But the line itself is still in my chest (contributing to my vulnerability re: Covid), because the pandemic hit before we could arrange removal. No reason to think I’ll get rid of it any time soon, because the backlog of ordinary hospital business is now vast. People much sicker than me are being told the surgery they now desperately need won’t happen until next year. The IF team, from what I’ve been told, is holding its breath.

A couple of weeks ago I was lucky enough to get emergency dental treatment, and the trip to the dentist (a five minute car ride up the road, and the furthest I’d been since mid-March) was very revealing. I’d heard local taxis could provide a taxi with a screen between you and the driver on request. Well, it turned out the screen was badly fitted, leaving about an inch of space between me and the driver. But because he had a screen, the driver wasn’t wearing a mask.

I took a calculated risk based on the short journey time and the fact I was wearing a mask – though as we know, the greater part of the protection of masks (outside full-scale medical PPE) lies in preventing stuff being breathed out, rather than in the vulnerable person not breathing stuff in. Seemed safer to walk home after – rainy day, few people (Ballyhack is hiving on sunny days), and I used the side of the street opposite the shops.

However, I’ve realised that taxis aren’t going to be a feasible way to go to hospital appointments. Half an hour (if you’re lucky) each way across town, in a cab where the screen is not adequate to protect me and the driver from each other? There’s a real question here about taxi firms’ duty of care to their staff – I’m talking about being human here, regardless of what kind of contract they’re on.

The point is that a precaution that doesn’t do its job is in some ways worse than nothing, because it gives people a false sense of security. I’m not sitting in a car for a total of an hour with someone unmasked. I’m just not. Would having the window all the way open be enough? I don’t know. Would I stake my life on it being enough? No. I’ve done a lot to stay alive over the years; I know exactly what it’s worth.

And taxi drivers, who sit in their cars with people all day, are unbelievably vulnerable and have no way of knowing what risks passengers have taken – perhaps themselves feeling they have no choice but to work in unsafe conditions. They deserve to be safe.

So my one option – as advised by my team – is using the St. John Ambulance ambulance transport for pickup/drop-off. I’m both exhausted that it’s come to this and deeply grateful that the option exists. It’s also very expensive, even with the substantial discount I got, because they are literally going to sit and wait for me, so it costs what it would cost if a taxi did that. I’m very lucky; I can afford that. Many can’t.

I think we’ve all already made up our minds whether we’re going to wear masks or socially distance or not, so I’m not going to harry you about that, but I write this because I think there’s a perception that everyone who’s been shielding has sallied forth and gone back to normal, and also a perception that we’re all magically not at risk any more, which isn’t the case.

Anyway. That’s the stuff I think about when I read about 48 new cases in one day.

(ABA)