There’s a sentiment amongst many disabled people right now when they see able bodied people struggle with the lockdown in place that is along the lines of, “welcome to my world.” I get it. In fact, I’ve felt it myself.

We live in a world where our self-worth is measured by our ability to earn money. And to suddenly be faced, in many situations, with a long period of being stuck at home and unable to do so is infuriating. As is being separated from people we love. People are grieving. They don’t know where to channel that grief either. It’s an all too familiar tale for many of us.

It doesn’t, however, excuse the number of people out there who seem to think it’s appropriate to shut down disabled people during conversations about lockdown or the impact on the those who are physically and socioeconomically more vulnerable. It doesn’t give anyone the right to tell us to suck it up and just go food shopping whilst simultaneously looking at us in horror if we dare to venture outside our front doors.

The UK government has severely let down disabled and vulnerable people with their “extremely vulnerable list”. The narrow list negates so many people with conditions that make social distancing impossible and others who also are likely to die if they catch COVID19 that it would almost be a joke if it wasn’t so serious. This Guardian article shows how we are being effected in regard to food deliveries. While during this episode of Al Jazeera’s The Stream, you can hear how the pandemic is causing problems for disabled people globally, as well as the comments yours truly was asked to provide. It’s a 30 minute stream and well worth watching.

There is also blame to be put at the feet of the hoarders, the able bodied two parent families like my next door neighbours who have vehicles, the single people and couples who can go to the shops but choose to get food deliveries instead. They are taking away much needed slots that disabled people require. My housemate and I both have mobility issues. I’m in a wheelchair, she has ataxia and a severe visual impairment, neither of us drive. We’ve managed to get TWO Tesco shops since the whole thing began and one hasn’t even happened yet because it’s for the 17th May.

Supermarkets are letting us down with their insistence on phone calls. How are those who are non-verbal, hard or hearing or Deaf supposed to call? What about those with severe social anxiety? One Tesco staff member told me she didn’t like phone calls. It’s not that I don’t like them, it’s that they literally send me into autistic meltdown. Especially when I’m forced to deal with automated selection lists and tinny hold music.

As disabled people we are becoming forced to rely on more and more ridiculous and expensive methods to get food which we often can’t afford. Takeaways and Amazon Prime Now being good examples. Especially with minimum orders often being £15. The food parcel boxes often don’t cater for individual dietary requirements so if you can order one you can end up with left over food you can’t get rid of because you are supposed to be sheltering in place for twelve weeks due to medical and government advice. But you still can’t get on that vulnerable list….

I spend my days tweeting and campaigning for awareness. Trying to get the main supermarkets to hear the voices of the disabled and vulnerable not on the list, in between worrying about loved ones who have COVID19, who have lost someone to it, or to something else during this pandemic and who can’t hold proper funerals. Or about the loved ones who can’t gain access to much needed services as well as food deliveries.

As I sit here writing this, I’m talking to an Instagram friend who is telling me she’s been sent a letter telling her not to go outside due to her and her partner’s medical conditions. But she cannot get a food a delivery. Her pharmacy won’t deliver medications. She has children. Are they all meant to starve or go without vital daily meds? Again we are being severely let down and no one seems to care.

When we try to explain that the local schemes in place leave us more vulnerable because it means trusting people with our money, the government ignores us. When I told my MP that I can’t rely on local food boxes because of dietary requirements he washed his hands of it. And those increases in benefits? Those only apply to those on Universal Credit, not the thousands of disabled people on legacy benefits.

I am begging the government to listen. But they don’t. Provision for disabled and chronically ill people is woefully inadequate.

“The true measure of any society can be found in how it treats its most vulnerable members.”

Mahatma Gandhi

Today I received a copy of a book that back in 2018 I was handed by an American friend and asked if I would consider editing it for clarity of flow, spelling, and grammar. Yes, I can see the irony in asking a Brit to check an American’s spelling, but I am fluent in both British and American English on an editing level and since this book was a passion project, and for my friend’s advocacy work, I agreed, without question. I must admit, there’s also a part of me that loves being able to be one of the first to see new work before it’s available to the public. Whether it’s fiction or non-fiction. And in the case of this non-fiction collection of stories, I couldn’t wait to jump in and help.

The book has been edited a few more times since then. New content has been added, and other people’s eyes have been over it. But essentially, it’s still the same manuscript that I so lovingly spent a full twenty-four hours awake on editing. I can admit that now, almost two years later. I think had my friend known that I spent the first twenty-four hours of the approximately seventy-two I spent working on the book wide awake with coffee at my side, she might have had something to say about the matter.

Journeys is something I had heard about for a while before I was handed a copy. It’s a book that I knew was in the process of coming into existence, but I didn’t know would move me just as much as it did, or indeed has again. I had no idea that it would have the capability to motivate me even more than Claudia has, to do what I can to help her not-for-profit organisation, C Three Foundation. As always, after the introduction to The Sinclair Method (TSM) which occurs in part one of the book, the story collection starts with pure and unadulterated honesty from the woman who has collected the individual stories, or ‘journeys’ within, Claudia Christian, founder and CEO of C Three. 

Claudia’s candidness when it comes to her battle with Alcohol Use Disorder never ceases to amaze or inspire me. I’ve known her several years now, and every time I hear her speak, every time I read her words about her journey, I learn a little more, and I find myself inspired all over again. The beauty of her telling her own TSM journey is that we see from the beginning that it isn’t all roses and sunshine. The Sinclair Method is only as successful as the ability of the person using it to remain compliant, and it’s not necessarily a one stop shop. For many, it can involve work that goes beyond just pharmacological extinction. This is something she emphasises in her own journey, and again in the FAQ section, and is emphasised by others describing their journeys within the book. 

If you want to treat AUD successfully with TSM, you need to remain compliant. Compliance means taking naltrexone an hour before drinking (or nalmefene two hours before), compliance means taking that tablet before you start drinking, each and every time. It means waiting that hour (or two), not cutting it short. And it means doing so for the rest of your life. TSM has a 78% long term success rate. In my eyes that’s HUGE! Compliance ensures that success and it’s clear from the journeys in the book that compliance works. 

Of course, that said, TSM doesn’t work for everyone. And we see that in the book as well. Maybe it’s down to the inability to comply with the method of treatment, or maybe it’s just that there is a percentage for whom the medication doesn’t work. For these people there are still options. There are still other programs of treatment. Some of those programs also go hand in hand with TSM.  

But what strikes me about this effective treatment, what should strike everyone who picks up a copy of Journeys, who has picked up a copy of Babylon Confidential (Claudia’s autobiography), or watched One Little Pill (Claudia’s documentary) or her TEDEx talk, is that in a world where people are dying daily from a disease that causes so much pain and suffering, a disease that is still treated as if it were a failing of character, we have scientific proof that it isn’t. And there is an answer. An effective answer. One that can stop people from craving alcohol, help them rewire their brains, and let them lead a normal life.  

This book is one that every AUD specialist needs to read. It’s one that should be read by everyone looking to find a treatment option that works for them. Loved ones need to read the stories inside and they need to see that there is hope, but that the journey isn’t necessarily an easy one. Because it’s only when we look at every option and every choice out there that we begin to see that recovery is possible and that the adage “once an addict, always an addict” isn’t necessarily correct.  

I’m nine months into recovery myself at the time of writing this review. Whilst I’m not on TSM, I’m a firm believer in its ability to save lives. I’ve seen the proof. I have people in my life whose lives have been saved by the work of Dr David Sinclair. Which is why I will shout from the rooftops that people need to read this book if they want to fully explore all options available to them, their loved ones, and their patients. Because as C Three Foundation says regularly: Options Save Lives. 

Journeys by Claudia Christian is available to buy now from Amazon and in limited autographed supply from C Three Foundation.  

It’s funny how people see you as one thing or another but they never really get the full view. There’s a person I know who saw me, rightfully so, as shy. What she didn’t realise though, is that I can be anything but when you get to know me, when it comes to looking after those I love, or campaigning for human rights. That when I’m at a sci-fi convention and surrounded by my fellow geeks and nerds, I can let my flag fly free, and for a few hours at least, I become a butterfly, before I need to retreat back into my cocoon and recharge.

I’m a creative. My world is one of observation, introspection, only allowing certain people in close enough, and even then only allowing one person in the whole way. I’m happiest with my own company, or with the company of animals. And when I want socialisation, mostly I want the company of a few select people. But I’m also autistic. I’ve learnt how to put myself out there outside of my comfort zone. It’s tiring and it drains my energy levels. It causes me to want that alone time even more.

There are a handful of people that I have been in regular contact with since the lockdown started. For obvious reasons, one is my housemate. One is my sister, one is my closest friend, there are two others. Only three of these do I talk to daily. And even then our conversations may be short and to the point. It’s a case of checking in and making sure the other is okay.

I am happy with my writing, sketching, sewing, reading, colouring books, photography, baking, pets, and a wheel around the block. There’s no boredom here. I have been training for this my whole life. More so since disability took over to the point where a nine to five became impossible. If I need to curl up in my bed and take a nap, so be it. If I want to sit in the garden and meditate, why not? The calm and quiet is good for me. I’m also learning not to let the minutiae of the day drag me down.

Life can still be beautiful, even when the world seems to be in complete chaos. If you just find the time to sit and breathe. If you remember to say no to the demands of others. And if you just allow yourself to find that inner peace.

Am I still your buttercup? That’s the question that’s been playing through my head. I know we’re still rebuilding bridges right now and I know that that takes time. But it’s the question that’s been on my mind for a while. I know that without a doubt you are still ma chou, my witchy woman, my Chóvihánni. You never stopped being. You never will.

It isn’t a question that needs an instant answer. In fact it’s not one I’m expecting to be answered any time soon. I’m not expecting answers to anything right now. I don’t want to pressure you into anything. I never have. I never even expected you to love me in the way you have or even like me.

None of the questions I have right now need an instant answer, but eventually they will need one. And my saying eventually doesn’t mean this week, or even this month. However, and I know I keep saying this, we do need to talk things out in the near future.

It isn’t fair of you to expect me to hold on for conversations, etc., that you promise but that get put off indefinitely. I am worth more than that. I feel like you expect me to fit around you and just accept it. I told you I would never be a yes person, and I won’t. I will always support you and your endeavours, I will always love you. I get your need and desire for freedom. But I also deserve to have a conversation with you where I am not the only one letting it all out more than once every couple of years.

If we are going to stand a chance at rebuilding things, then we both need to put the work in. And I’m happy to listen to what you need from me in return to make things easier/rebuild things. But I do expect that we will both put in the effort. That means no more running, for either of us.

I am not prepared to be anyone’s ego boost. Nor am I prepared to not have my needs taken into consideration. I will always take the needs and desires of those I love into the consideration but I expect the same to be done for mine. Now I’m not saying you see me as an ego boost but I do need to get my feelings out as and that’s what these journals are for.

And to be honest I want to fix things and rebuild what we had, but it will take both of us and it will take more than emails and journals. But I shouldn’t have to be the one asking for time with you. I shouldn’t have to be the one to say “if you have an afternoon free….” If you really want to spend time with me , you will. If you really want to make things better between us again, you’ll find a way to meet me in the middle and put the effort in.

I’m not trying to be harsh or demanding, I’m not putting pressure on you. I am simply being honest. Because with all the will in the world, I can repeat myself until I’m blue in the face or until my hand drops off from writing, but it will take more than my love and effort alone to rebuild things.