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How Rose Ayling-Ellis’ Appearance on Strictly Helped me Come to Terms With Being Deaf

When I was just seven years old, the unthinkable happened. I was diagnosed with a rare and aggressive benign mass that was tearing its way through my eardrum: a cholesteatoma. Cholesteatoma affects just one in 100,00 – and is even rarer when it’s congenital (meaning you’re born with it, which my doctors are almost certain that I was). 

When I was 7 and a half, I had my first surgery – what would be the first of many – to remove the tumour. When I woke up, my hearing was worse than it was before. The mass had caused irreparable damage. We tried many forms of treatment, including further surgeries, before I was referred to the audiology department, where I was fitted with my first-ever hearing aid. 

Going deaf at a young age, when everyone in your family – and pretty much everyone you have ever known– are hearing is so hard. There is no one to look up to, no one to see that is also deaf that would show me that, while it would take a little while to come to terms with my deafness, I would be okay. That there was an amazing community and there was beauty within being deaf.  


The Inferiority of NHS Care is Tories Paving the Way for Prioritisation

I had the misfortune of having to go to A&E recently. A wonderful friend was able to drive me as it was the weekend and they don’t have 24/7 emergency care at my closest hospital. Fearing the worst in regards to waiting times, I sent her home and hoped I’d be done before she had to go to work.

As an accident rather than an emergency, and knowing a friend of mine had waited 8 hours for neurology in this very waiting room, I got out my book and familiarised myself with what I expected would be my surroundings for most of the day.

A&E departments are busy at the best of times, but the relative chaos for what wasn’t a department with that many patients shocked me. I’ve had to go to A&E with chest pain before now (a different one, and pre-pandemic, granted), with every bed full with patients who could actually die rather than walking out of there – but the air of behind the scenes calm made it a completely different environment to be in. 

I went in worried and came out calm (not just because my pain turned out to be muscular). The same is not true of my recent visit.

Even over my book, I watched the same nurse hurry past me 4 or 5 times (and she wasn’t the triage nurse). Senior nurses shouted and pointed, receptionists trying to see to patients, answer constantly ringing phones, and radio for a porter to come push the patient in the wheelchair up to x-ray (before giving up and taking him herself). The student nurse had nobody, in particular, looking after her, and I swear I saw the fear in her eyes. It was carnage.

I am fine, by the way, and the staff worked their socks off in what is still a high-stress situation for them because – despite what capacity crowds at stadiums up and down the country suggest – we are still in a pandemic!

A few days later, I had to follow up with my GP. Despite them receiving the details of my hospital visit via email (or possibly fax), I went through the usual process of hearing the engaged tone more than 20 times, waiting on hold for nearly half an hour and then waiting for someone to call me back within 4 hours to assess the situation and possibly offer me an appointment for later in the week. 

The telephone consultation service has been a hallmark of the pandemic and in a lot of cases I can’t fault it – lots of things can be dealt with without being seen face-to-face. But my surgery has been using it since before the pandemic, and in cases like mine it adds to the time it takes me to be seen. Tying up a clinician’s time when we both know I need to come in right away, and making my wait longer.

Waiting times for a referral have shot up as well. The standard 18 week maximum for non-urgent surgery and two-week maximum for suspected cancer have recently fallen by the wayside in a lot of areas, e.g. patients in Norfolk and Waveney waiting more than a year for orthopedic surgery or facing having to travel hundreds of miles. 

The pandemic is taking a lot of the blame here – specialist departments are backed up from all of the lockdown cancellations, the additional resources used for covid-19 care have not necessarily been replenished. And, as I said, there is still a pandemic happening.

But I think it’s more sinister than that. The NHS is being treated by our government like an old, disused sports centre building – they’re letting it decay and rot until it collapses in on itself or someone sets it on fire and it can be condemned and torn down so someone can build some houses. 

The Tories are choosing to let waiting times skyrocket, to have GPs only be able to run same-day telephone services, to put fear in the eyes of student nurses. Disability activists have been warning about underfunding for our NHS for years, but the pandemic has provided the perfect excuse for the government to let it all go to pot.

Why? Well, it’s pretty simple. Patients have three options: go private, get used to this inferior standard of care, or die. Option 1 “just goes to show” that “people” (rich people) would rather pay than wait, option 2 justifies continued cuts because “patients are fine” and “they’re clapping for the NHS anyway”, and option 3 is fairly self-explanatory. 

All three of these put whichever waste of space health secretary we currently have and all their chums in pole position to move another step towards condemnation and using the space (money) to build houses instead (line their own pockets).

That next step appears to be the Health and Care Bill, voted through on 23rd November 2021 by a majority of 291 to 244 (the government being minus three rebels). It splits the NHS into 42 component parts, because of course what we need in this time of crisis is a higher administrative burden. These 42 parts or Integrated Care Systems (ICSs) will be made up of Integrated Care Partnerships (ICPs) including charities, council representatives and Integrated Care Boards (ICBs). 

Where it takes us another step towards privatisation is that those ICBs can include heads of private health companies – and they can have an influence on funding decisions. It also gives the health secretary overall control of certain aspects of the NHS, allowing them to make minor changes without going through parliament.

The bill is now on it’s second reading in the House of Lords (the first reading being a formality), which is where it can now be stopped – but since when have people identified as “Lords” had the little guy’s interest at heart? Some of those lords may be or may be associated with some of the chums looking to get on the boards of those 42 ICSs.

The Tories’ chronic underfunding of our healthcare system has given them the opportunity to get to this point without total public outrage (although plenty of people aren’t happy). 

Standing up in the commons and saying the NHS was being sold wouldn’t get them re-elected, but reforming a system that is failing – because of their own actions – just might.

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When I Say ‘Endometriosis’ you Hear ‘Infertile’, and I’m Tired of it.

TW: This article contains discussions of reproductive health and fertility.

Seven months ago my consultant made the decision that it was in my best interests to be induced into chemical menopause. In the two years since my initial diagnosis via surgery, endometriosis had returned and spread to my bladder and was showing no signs of slowing down.

With the NHS waiting list for laparoscopy and cystoscopy looking dire, and my inability to finance surgery for excision privately, it seemed there was a ticking time bomb strapped to my organs – and medical menopause was my only feasible option. 

The concept of menopause at twenty years old is bizarre, though I trusted my consultant’s judgement. The injection I am taking, Prostap, has a concoction of side effects, alongside the existing unpleasant symptoms of menopause, but it feels the endurance of these side effects is the lesser of two evils.

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Navigating the Disabled World with Multiple Health Conditions

I am someone who has newly entered many spaces. I often lurk from the beginning, aware I don’t know anything. As a multiply-marginalised and multiply-disabled person, it has taken me a while to get any grip on who I am and how I experience the world.

Finding labels like nonbinary, queer, disabled, and neurodivergent have been a powerful tool for me in a society that avoids talking about these communities. However, it has been a rocky journey walking among the different sub-categories of the disabled community, as someone who embodies more than one. 

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Disabled and Sexual: The Met Police Guidance on Women’s Safety is Useless to Disabled Women

TW:  This article discusses sexual violence, domestic abuse and abuse towards women and femmes, in particular disabled women and femmes. It also mentions police misconduct as well as the murders of Sarah Everard and Sabina Nessa. Please practice self-care. 

Disabled and Sexual is a monthly(-ish) column by Hannah Shewan Stevens which will explore all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.

This month, the Metropolitan police’s misguided advice on women’s safety, reminded every woman and femme of the inescapable knowledge we live with daily: none of us are safe.

The Met advised anyone concerned about being approached by a lone male police officer to ring 999, “shout out to a passerby, run into a house or wave a bus down” for help. It also suggested quizzing the officer on their reasons for the stop. 

In the wake of the trial of Sarah Everard’s killer and the murder of Sabina Nessa, the police’s PR face has been an undeniable mess but for disabled folks, the latest advice felt particularly ignorant and exclusionary. 

A blind person cannot easily flag down a bus for help, a wheelchair user may not be able to run for their life and a non-verbal person is incapable of quizzing a police officer. 

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Why Being a Disabled Freelancer on Universal Credit is a Double-Edged Sword

I’ve been on a mixture of Employment and Support Allowance (ESA) and Universal Credit since I was 17 years old, due to my disability limiting my ability to work. Both are a benefit that can support people who are unable to work, or unable to work full-time hours.

I was never able to get a Saturday job like my friends due to my disabilities, nor attend university. So at a young age I quickly found myself with very few options – and a family unable to support me financially. 

At that age, I had no idea that accessible work options even existed, so I truly believed that I would never find a job that I could do.

Being able to sit here today and say I have found accessible employment, that I can do whilst receiving Universal Credit, a vital safety net, is amazing. But, it’s also a double-edged sword and not the life-changing moment I’d hoped it would be. 

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Pain Chronicles: Being Fat Isn’t a Disability, but Society’s Attitude to it Can be

Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Delves about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown in chats with her mum Shaz, and other friends too, along the way. 

For her 50th birthday, I took my mum to see Matilda in the Palace Theatre in Manchester. We were all the way up in the heavens – having to pay £2 for the tiny binoculars fancy women have on sticks in films set in the early 20th Century. But we didn’t let that stop us having the time of our lives.

Before booking, I’d scoured the access information on their website (which was, and still is, limited). I knew the lift went to the rear circle and there would be almost no steps for our back row seats. I knew they had a disabled toilet.

What I didn’t have is much information on the seats themselves.

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Abortion is a Disability Rights Issue – and Not Just Because of Eugenics

TW: Abortion, eugenics, sexual assault/rape.

Unless you’ve been living under a rock for the last week or so, you’ll have heard about Texas’s bill banning abortion after the sixth week of pregnancy – before most people even know they’re pregnant. If you don’t live on Twitter, though, you may have missed eugenics creeping into the debate.

A tweet from Richard Hanania of the Centre for the Study of Partisanship and Ideology points out that you generally can’t screen for Down’s syndrome before about week 10 (the NHS says you can screen for it and Edwards’ and Patau’s syndrome between weeks 10 and 14), and that lots of those who find out their child may have Down’s choose not to continue with their pregnancies. 

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What Happens if You’re too Broken for the NHS?

By all accounts, a lot of the stigma that once existed around mental health has been eroded. Studies show that people’s knowledge of and attitude towards mental health issues has significantly improved in the past decade, with a Time to Change survey reporting that since 2007, 4.1 million people have improved attitudes towards mental health. So, these days, it is a lot easier to open up about your mental health.

But it’s not enough.

We’re sold this story of everything getting better if we only just speak up -– like the only thing holding us back from recovery is ourselves – but the reality is a lot more complicated than that. A lot of public discourse emphasises how so many people with mental health issues are ‘suffering in silence’ and that if they only reached out to get help, everything and everyone would be rosy. But that’s not the case.

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No Spectrum 10k, Autistic People Don’t Want to Know the Cause and We Don’t Need to be Cured

Trigger warning – This article discusses eugenics in relation to finding a “cure” for ableism.

This week, we saw the launch of Spectrum 10K – a project aiming to gain DNA samples from 10,000 autistic people and their families to examine our genetics, to see how our experiences “shape our wellbeing”. It aims to be the largest study done, but after its launch by celebrities such as Paddy McGuiness in the media completely uncriticised, it has quickly raised alarm bells across the autistic community.