**This topic is a heavy one and might be triggering for some. If this is something you struggle with please seek support there is a list of services that may be useful, including helplines here: https://kayleighcreativeworld.wordpress.com/asd-resources/ **
**I will leave links to all my sources at the bottom of this post. **
What is #LeftOffTheList?
The hashtag was created by the disabled community as we became increasingly aware that we would not be prioritised during the Covid-19 pandemic and specifically the Covid-19 vaccinations. We were told last summer by the Prime Minister and UK government that they would consider, and support disabled after neglecting us through most of the first lockdown. Since the statement was released, we have heard nothing of how they will support us. The majority of us have been struggling through the past 13 months more so than the average (able-bodied/neurotypical) person.
A large majority of disabled people have been shielding since the start whether, or not the government have sent them the letter of acknowledgment, which has felt very invalidating that not everyone in the community is included in this list. We all support and appreciate those on the list, of course they are deserving and in need of that protection. However, it is also true that we feel ignored and left behind.
When it comes to the vaccine priority list, naturally age descending is the best way to establish the order of most vaccinations. The older anyone is the more vulnerable they are to almost any illness, virus etc. After the elderly, people with respiratory issues were also prioritised as coronavirus affects breathing therefore it makes sense that they would need urgent protection. Group 6 is the one disabled people have been paying close attention to. Here is the current list on Gov.uk for Groups 4 and 6 (groups for clinically vulnerable people)
- You have one or more of the conditions listed below.
- Your clinician or GP has added you to the Shielded Patient List because, based on their clinical judgement, they deem you to be at high risk of serious illness if you catch the virus.
- You have been identified through the COVID-19 Population Risk Assessment as potentially being at high risk of serious illness if you catch the virus.
If you do not fall into any of these categories, and have not been contacted to inform you that you are on the Shielded Patient List, follow the guidance for the rest of the population.
If you think there are good clinical reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP or hospital clinician. People with the following conditions are automatically deemed clinically extremely vulnerable and therefore included on the Shielded Patient List:
- solid organ transplant recipients
- people with specific cancers:
- people with cancer who are undergoing active chemotherapy
- people with lung cancer who are undergoing radical radiotherapy
- people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
- people having immunotherapy or other continuing antibody treatments for cancer
- people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
- people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
- people with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
- people with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
- people on immunosuppression therapies sufficient to significantly increase risk of infection
- problems with your spleen, for example splenectomy (having your spleen removed)
- adults with Down’s syndrome
- adults on dialysis or with chronic kidney disease (stage 5)
- women who are pregnant with significant heart disease, congenital or acquired
- other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions
- a blood cancer (such as leukaemia, lymphoma or myeloma)
- a heart problem
- a chest complaint or breathing difficulties, including bronchitis, emphysema or severe asthma
- a kidney disease
- a liver disease
- lowered immunity due to disease or treatment (such as HIV infection, steroid medication, chemotherapy or radiotherapy)
- rheumatoid arthritis, lupus or psoriasis (who may require long term immunosuppressive treatments)
- have had an organ transplant
- had a stroke or a transient ischaemic attack (TIA)
- a neurological or muscle wasting condition
- a severe or profound learning disability
- a problem with your spleen, example sickle cell disease, or you have had your spleen removed
- are seriously overweight (BMI of 40 and above)
- are severely mentally ill
Further detailed information on priority groups is available in the COVID-19 Green Book, chapter 14a.
At the same time as adults under 65 years with long term conditions, the vaccine will also be offered to unpaid adult carers – those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill.
The list isn’t very specific when it comes to mental disorders and definitely has missed a lot of proven vulnerable conditions that would definitely affect the mortality rate against the average person of the same age. Many officials have claimed that there is no scientific evidence that any of us disabled folk are any more vulnerable, but the numbers prove otherwise. People with disabilities have made up more than 60% of Covid deaths not to mention the unauthorised DNR’s issued on disabled people last year. It is unacceptable that we are less valued when it comes to our care if we were to fall ill with coronavirus. I am also of the point of view that anyone prioritised for a yearly Flu-jab should be notable as vulnerable to this too. I remember at the beginning of 2020 coronavirus was being related to the flu in the way that it affects and infects people only in a more severe manner. I am not a medical professional and am not in a place to say how exactly the virus works within the body, but I can say that anyone at risk should include those who are prioritised for a free yearly flu-jab. There is enough information to suggest that coronavirus is even more dangerous to those individuals. It baffles me that some people can walk around without the fear of getting ill in the way that we do and that they can feel that they don’t need vaccinations. It feels unfair and we should be angry that our voices aren’t heard or appreciated by the majority of society.
In summary a lot of us have been left off the list and we are hurt and disappointed by this Once again the government has failed us, they are valuing us far less than the rest of the country. It seems to bring back the old saying that “disabled people are not useful or productive to our society”. Or that we are lazy and just want to be stuck indoors all day, every day. I cannot tell you how much I roll my eyes every time I hear this.
I’m just going to list them here; I will cover the relevant parts later in this piece:
- Chronic Fatigue Syndrome
- Hypermobile Elhers Danlos Syndrome
- Dissociative Disorder
Inews.co.uk included an article with quotes from people such as Dan Scorer head of policy at MenCap (Mencap is the leading voice of learning disability). “Everything we do is about valuing and supporting people with a learning disability, and their families and carers. Our vision is a world where people with a learning disability are valued equally, listened to and included.”
The first quote I came across is as follows: “People with a learning disability in England are dying over six times the rate of the general population – yet shockingly not everyone with a learning disability is being prioritised for the vaccine”.
I have seen many posts stating this statistic and as far as I’m aware MenCap is a legitimate, supportive charity created to help those with learning disabilities, including but not limited to Autism and Down’s Syndrome. Not all people with these conditions have diagnosed learning disabilities, however most do have comorbidities that fall under this category. Fortunately, people with Down’s Syndrome are on the priority list and I hope they have all been called for their vaccines by the time of writing this (April 2021). I have a diagnosis of Autism and ADHD but there is no way to measure “severity”, there is no mild or moderate forms of these disabilities. It’s a spectrum and affects us in different ways on different days. Most of us reject functioning labels which is the equivalent of this. What is stated in these guidelines is extremely ableist and discriminatory.
“Other charities representing people with tetraplegia, high level paraplegia, chronic fatigue, and other rarer conditions have also asked the government to clarify its plan”. – George Martin (Inews.co.uk Writer)
We are yet to know anything other than that we have been deemed “not clinically vulnerable” by the government despite the figures suggesting otherwise.
“I’m afraid disabled people like me won’t be seen as ‘valuable’ enough to save from COVID-19” – Samantha Renke
There were multiple articles on metro.co.uk from Samantha Renke, a disabled, actor, and rights campaigner with personal titles such as
- “I had to chase my vaccine – how many more ‘vulnerable’ people have been left off the list?”
- “The Pandemic has worsened the online bullying of disabled people”
- “I wish caring for disabled people was seen as a long-term commitment, not a stop gap”
- “I don’t want to be your inspiration porn”
Samantha has first-hand experience with the discrimination and throw away ableist comments that damage our community, not to mention our quality of life. She has said “Until we as a society put people before productivity, I won’t ever feel safe”. We are made to feel we are not valued, as though we are not “productive” members of society. We are treated as lesser than all over the world. Samantha says “I felt disposable” which is the case for many of us. Whether it be our workplace situation as the pandemic hit or just generally being allowed to live as human beings. Most of the disabled community were shut away for over a year and not being vaccinated is going to cause even more stress and anxiety on these people while they have to watch their friends return to a “normal life” that still poses a huge threat to our health.
“The message many disabled people are getting is that we aren’t ‘important enough’ to save”.
In some places due to the overcrowding of hospitals DNR’s were placed on people with learning disabilities and Autism without any consultation with them or their families. Doctors in areas were told they could use discretion to prioritise who would get a ventilator, clearly allowing them to choose who is more ‘valuable’ or more likely – in their eyes- to survive the virus based on being previously able bodied. How is that fair? How can anyone determine who lives or dies based on any human condition? Yes, it is challenging and yes decisions have to be made quickly but this should never mean discriminatory behaviour is ever allowed! It was the governments responsibility to protect us and give us guidance on what to do and they failed our community on a catastrophic scale by allowing this to happen and still not trying to support any of us other than to “shield” from the rest of the world for an indefinite amount of time. The responsibility has been put on us to protect ourselves but not the rest of the public that have been breaking rules and spreading the virus throughout. Having the vaccine does not mean you cannot spread the virus, nor does it make you 100% immune. What it does do is reduce the risk of being hospitalised and will hopefully create a level of herd immunity once we have ALL been vaccinated. Based on the knowledge that the majority of our community is terrified to go outside, it is quite clear that we are not the ones spreading this deadly virus to our friends and families, therefore, we should have been prioritised for the vaccine along with the elderly. Unsurprisingly we have been in the same boat all year and should be classed at a similar vulnerability level. We all know that there will be a lot of people, as restrictions ease, being reckless and acting as though the pandemic never happened. I think disabled people should have the right to be protected against the virus because of this, especially as before long we may once again be forgotten.
I wanted for the world to stop treating us as an afterthought but even through the struggles they suffered through the past year, which in some minimal ways mirrored ours, they still diminished our struggles. They were “being dramatic” as they put it to us over the years. The difference is there suffering was temporary. Of course, we all felt sympathy, because being stuck indoors, being afraid, scrambling to keep our mental health from crumbling. However, that doesn’t stop us from feeling angry after years of trying to get the able-bodied to understand what we were going through and to stop invalidating our experiences to then be told “how can you do this every day?” and “I could never cope with this life, I can’t wait to get back to normal”. We know full well once they do, they will forget about us again. It was such a small menial experience by comparison to the rest of their lives. They will probably look back and laugh about how ridiculous it was for them. I am devastated by that thought. It genuinely keeps me awake at night. Do the able-bodied worry about things like this? I’d guess not or they would be more accommodating to us.
Accountability and Accommodations
I have said it before and I will say it again, for one year all the things we have been begging for to make the world more accessible were made available within a few months. Not for us, not so disabled people can be included in the rest of society, but for the able-bodied to work from home, so they could stay safe without feeling isolated or like they couldn’t do what society deemed “normal” or “productive”. I have a feeling all of these will become harder to have access to once the world opens up again. We have always had the right to ask for these things, and now we know they are easy to implement we have every right to demand them. Why should we be silenced? Why should we be forced to suffer when society (and the government) would never allow anyone else to go through this?
The video calls, the ability to work from home, compassionate paid time off because of unforeseen circumstances, being allowed to work at our own pace with whatever method helps us focus (e.g. listening to music through headphones, regular short breaks). These are not luxuries and disabled people will never see them as such, it should be the same as the right to have ramps in every workplace for accessibility.
The entire time people were working from home they were not constantly monitored, they could listen to music, they could take a 5–10-minute break when their focus was slipping away. They could wear what they found comfortable; they could work from the locations in their homes that worked best for them.
Isn’t it heart breaking how easy it was to implement? I was certainly floored when I witnessed this happen.
ME/CFS and Vulnerability
ME Association message from Matt Hancock, MP, Secretary of State for Health and Social Care that was sent to a person with ME/CFS: “In all cases you should contact your GP if you feel you should be vaccinated sooner. I want to assure you that we are committed to vaccinating according to need, and you will not be left out of forgotten in this process.”
Can you see the problematic nature of this message? That they put it down to how we “feel” we are vulnerable, as opposed to the facts and that we would be vaccinated “according to need” which is clearly not true as less vulnerable people are already vaccinated. He claimed we would “not be left out or forgotten” which is blatantly not true. We have been telling our GP’s, MP’s, anyone that would listen and had the power to help us that we were vulnerable and only some of us were listened to.
The are many first-person accounts in a guardian article of the anxiety surrounding their ME/CFS and coronavirus. I will quote a few here:
“I have Chronic Fatigue Syndrome and catching coronavirus would exacerbate it greatly perhaps even permanently. Previous infections of this nature have knocked me off my feet for a few months at best, caused permanent damage at worst. Although guidance allows for other conditions to be included in priority Group 6, ME/CFS is not mentioned on the list. I fear many won’t have the energy or ability to fight and/or a GP willing to advocate for them.” – Marie
This one struck a chord with me. I certainly have been running out of energy trying to fight for a vaccine, even with my partners help. I have been told by my GP to contact the vaccine and the helpline (NHS Vaccine Helpline No. 119) tells me to speak to my GP neither will tell me why I don’t qualify for it or who else to go to. I just get told “our hands are tied” with no reason. As an Autistic woman, I have been agonizing over the fact that I don’t have that answer, which is adding to my fatigue. It also made me think of how if I did catch the virus, I might not have the energy or ability to fight it off. I have found it to be a very physical fight to get better no matter what illness I get.
“I’m unable to work due to Autism (and a learning disability). I have been shielding since September only going out for medical appointments, exercise etc. I do not go into shops anymore as there is a chance, I shall be challenged for not wearing a mask. I am exempt from doing so and wear a sunflower lanyard (to state my disabilities). However, there is always someone who won’t accept it and challenges me unfairly. It is so unfair when people should be mindful that not all disabilities are visible. The vaccine would give me peace of mind and protection. My GP does not recognise that I am in a high-risk group, even though it is acknowledged that my husband is my carer. The vaccine priority list people like myself at an unfair disadvantage.” – Frances- Mary
This really reflects how I have been feeling. I have just had to leave my job because of my conditions and to care for my health and I have barely left the house at all for the past year. I am too afraid to. Even when I went out recently just to visit a book shop, the streets were crowded with people not following any guidelines nor caring that there may be some at risk people trying to claim back an hour of their life from solitary confinement.
As for the challenging about the masks. I get severe sensory overload from wearing masks and even visors because I already have to wear high prescription glasses. It gives me a headache and causes panic attacks which means I have to take them off to take deep breaths comfortably as to not exacerbate the attack. The short time I did work toward the end of the first lockdown I wore my sunflower lanyard to work, and my management were aware of my disabilities so I assume they would understand, plus I would be working behind a screen to protect the customers anyway. I have absolutely no problem being asked if I am exempt, if done in a considerate manner however. My line manager had an argument with me over it because he didn’t “want” to wear one despite being able to. I was told I had to check with the overall manager “to make sure it’s okay” despite the law saying so. I was absolutely disgusted, my colleagues all backed me and told him I was disabled because it was clear he was being unreasonable but for the whole time I was there the complaints about having to wear a mask when I didn’t, seemed endless. It definitely triggered my anxiety to be told, and I quote “if customers ask and make a fuss about it, it’s your responsibility to explain it to them” as if it is any of their business. Customers don’t need an explanation other than “I’m exempt” before they move on and yet to have management basically say they won’t step in if I am being asked personal questions that I shouldn’t have to answer clearly shows it was not a disability friendly place. (I should note it took them far longer than any other place to have the measures enforced e.g., screens, public hand sanitizer, clear markings and signs, restricted number of customers at one time. All the red flags were flying high).
I am sure I’m not the only one that feels like I’m missing out when we see all the people going to pubs and wondering through shops whenever they like. I’m sure many friend groups are spending more time together. But I feel unsafe to leave my house. I am the only one in my family to not be vaccinated yet, my carer is the same age as me and he is already approaching his second dose. I spent most of my childhood locked inside because I couldn’t bring germs into the house (at least that’s what I was told) and to be put through that again has devastated my mental health.
“We welcome the news that all adults on the learning disability register will be offered a jab more quickly in England, but we will not stop fighting for those with mild or moderate learning disabilities to be included as well as those with chronic conditions such as asthma and ME” Freya Papworth of Women’s Equality Party.
It is safe to say that almost all charities support us, no matter what our disability. In my opinion the government’s failure to acknowledge and protect us is unforgivable. We have been overlooked for too long! I have heard many stories of people contacting their local MP’s and any government official they can find. Very few have even received a response, myself included. At this point I am out of energy; I probably won’t see a first does until the summer. I know I will not get to enjoy the world the same way as everyone else until next year. My mental health is going to suffer the most, watching the crowds from my window, laughing groups of friends, excited children. It is devastating that I will have to reduce my contact with busy places as much as possible. As if the world wasn’t inaccessible enough to most of us.
I really appreciate all the work these organisations have put in to advocate for us, although it has furthered the evidence that the government care far more about their economy and the people who contribute by working in shops etc than those of us that are considered an inconvenience for asking for any accommodations.
I want the government to answer for what they have done and actively include us in conversations. We don’t see many disabled people in parliament, and we are definitely the furthest thing from the minds. According to Gov.UK in 2014 (which is too long ago to not have update this) there were over 11 million registered disabled people in the UK (out of 65 million at that time). I am certain as the conditions are better understood and diagnostic criteria has been reviewed over the past 7 years there are many more. For example, Autistic girls (and likely non-binary and trans people) were under diagnosed, the criteria was only suited to stereotypical “boys”, now we are seeing many girls getting their diagnosis and becoming more confident in themselves. If we take up more than 16% of the population (and that is just those with an official diagnosis) surely our voices matter. It might seem like a small percentage to some, but the population of London was over 8 million in 2014 and nearly 2 million of those were likely disabled. 2 million is a huge number for just one city. Fordwich in Kent is one of the smallest towns in Britain, estimated at just over 300 people which means more than 50 of those were likely disabled. You couldn’t go to your local shop without seeing someone disabled. All this information is readily available online and yet we are still treated like a minority. Imagine being an ethnic minority as well as LGBTQ+, I truly feel for those people. They must be hit hardest of them all in these huge government issues.
2 million people in just one place and yet we still are not being heard. 2 million people made to feel that they don’t matter. 2 million people valued as lesser than everywhere they go. The government is blindly encouraging ableism, they silence us and tell everyone to go back to normal. Did anyone receive any reason to stop shielding? They just said it could happen not that we were safe. If anything, it would have been safer to go outside while the rest of the country was in lockdown and that is saying something.
My heart and trust have been broken by the past year. We lost over 127,000 people, approximately 76,000 were disabled. Every single life lost matters! I doubt I will ever trust our government unless they seriously revaluate their priorities and neglect for us. When I have the energy, I will keep shouting for our rights. I will make noise and I will not stop until we are truly heard. We deserve better, we deserve to have as good of a life as anyone else. We Are Different, Not Less! The fight is not over yet…
NHS Vaccine Information:
ME Association Website Source:
The Guardian Sources:
Disability News Service Source:
Women’s Equality Party Source:
Disability Rights UK Source:
Misc Autism and EDS Sources :