mental illness

And so it goes…

~ somethinginthewayshemoves

A woman I follow on social media had a baby. A much longed for child. She had tried unsuccessfully to conceive for many years & had shared this fact with the internet. Finally, her dreams came true. Of course she also shared this joy. I felt genuinely happy for her.

Then a kind of depression hit. I don’t actually know these people. I didn’t even follow her for that content. It was just another part of her life that she chose to be honest about. I saw her occasional posts about infertility and empathised. I hoped things would go well for her. I was happy when she talked about her pregnancy. Her posts about preparing for the baby were lovely. I clicked the heart on all the little outfits and baby paraphernalia. I didn’t give it a lot of thought. When she came up in my feed I thought it was nice that she was getting her happy ending.

I don’t really understand why the shift when her baby arrived. The photos are adorable. I don’t begrudge her having something I cannot. Still, I plunged into a really yucky pool of emotions. I wouldn’t even describe as a fully fledged depression. I feel sort of hollow. Numb isn’t quite right and neither is sad. It’s a little bit like the world is a technicolour picture and I am merely the text. My life lacks dimension. Absolutely nothing has changed. This woman’s story does not impact me at all. I will remain the same. It’s possible that witnessing someone else transform really underlines my stubborn lack of metamorphosis. It’s hardly my first rodeo, though.

My mind‘s ability to fuck with me never fails to catch me off guard. People are having babies everyday. There are films and books and friends and strangers with tales of loss, of waiting and of miracle babies. I can’t enumerate the number times I have been told about someone’s cousin or work colleague who tried for a million years and when they’d given up hope, it just happened. Social media is jam packed with pregnancy announcements and birth stories, they don’t all put me in a tail spin. Why this one? I’ll never know.

There is a hole through the centre of me and periodically something will disturb the wound. That constant background absence becomes a painful cavity. Often without warning or my full comprehension. It’s tiring. I have made strides towards another life. Most of the time, I’m proud of what I have built, but I cannot fill the gap. I’m 45yrs old and I believe I have reached another of those epic life realisations. This is it.

I don’t mean that in a defeatist way. I have been labouring under the illusion that I could find an alternative centre of gravity. Not knowing what was or could be felt sad & awful. I understand now, it doesn’t exist. I will never be a Mother & nothing will fill the role. Acceptance has been a long time coming, but it might be here. It’s painful, but there’s also a large amount of relief in it. The desperate search can cease. As can all the feelings of inadequacy that arise with never being able to find the thing. I have what I have, my efforts are much better spent making the most of that.

Cat Tax

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Still…

~ somethinginthewayshemoves

I’m doing well. I really am. When I compare with my previous self there is no doubt that I’m in a much better place. Still, no matter how well I become, the devil on my shoulder remains.

That devil is destruction. Self destruction. Sometimes just flashes; a momentary thought of blood or blades. Other times I experience the deepest longing to ravage my skin. My reaction to pain is still, more often that I would like, the desire for more pain. Not the same kind of pain. A pain I can control. I have worked at working myself out. Learning healthy coping strategies, questioning myself, pinning down what I feel and why have been an ongoing process for decades. I am better. I haven’t self harmed in a very long time. I still want to, though.

Not everyday. Not in the compulsive ‘can’t think about anything else until it is done way’. I don’t berate myself for not cutting or create a mandatory timetable. That is gone. I have conquered that aspect of my demon. My problem is, the underlying urge never really goes away. In times of trouble my mind thinks it knows what will ‘help’. I suppose it’s like being an alcoholic. There will always be days when one really wants a drink, except in my case it’s a scalpel, not a bottle I want to reach for. The weird bit is that these thoughts aren’t reserved for awful days. Occasionally, for no reason whatsoever, a wave of craving will hit me. Honestly, my toolbox isn’t particularly helpful in those instances. It is very difficult to reason with a nonsensical ghost in your head. I’m left with sheer determination & an awareness of how slippery the slope is.

Strangely, I rarely hear anyone talk about this. There is much discussion about the warning signs for self harm, the damage it causes and how to stop. There is even information on how to treat wounds and hide scars. It’s all very much a before and after narrative. People are sick and then they recover. As I’m sure you’re aware, very few things are ever that simple. We generally understand the complex nature of addiction and mental illness. For example, much work has been done to educate people on eating disorders. Most people know how difficult they are to manage and recover from. It’s generally understood that people are not concretely cured. It is a process that involves relapses and continuous effort. Disordered eating becomes compulsive and corrupts thought patterns. Often nothing is as important as maintaining the disease. Likewise substance abuse takes over a person. The priority becomes obtaining the substance of choice. Whilst no one thinks that’s good or healthy, we do understand that people don’t want to be controlled by an illness. These are topics that are commonly discussed; we have compassion and celebrate those who have worked towards recovery. Not so for self harm.

Self harm is still taboo. There isn’t really any mainstream discourse of its realities. No one is making serious documentaries or accurate media portrayals. Celebrities aren’t telling stories of how they won their battle with self harm in the way they regularly do regarding addiction, eating disorders or issues like anxiety. The latter are viewed as brave and inspiring, self harm is still seen as disturbing. Even talk of relapse or the ongoing nature of recovery are received positively, but discussions like I had above is very much in the ‘crazy’ category for most. Despite the fact that statistics show the prevalence of ED & SH are fairly similar and that they share many commonalities, the public perception is very different. Even years into ‘recovery’ it frustrates me. The stigma sticks. I can carry the weight of other people’s judgement now. That wasn’t always the case and it won’t be for many still in the throes of illness. The fear of the judgement creates an impediment to seeking help. That delay is extremely dangerous. So, yes, I’m still talking about this because hardly anyone else is. I don’t believe people get better in silence and I think it helps to be prepared for what better might actually look like.

If you like what I do you can support me on Patreon.

5 things I liked in April…

~ somethinginthewayshemoves

April has been a very up & down month. Lots of really lovely time spent with my littles & their people. Also, an equal amount of time despairing at current events & struggling with mood dips.

I have coined the name ‘Depression Light’ for this state. It’s not deepest, darkest agony. More of an ugh that makes everything feel a bit futile. I am generally anxious and really not sleeping well. Sometimes it’s the little things that keep you afloat. These have been my buoyancy aids this month.

Spring Lambs

Taking my niblings to see the newborn lambs at a Farm Park was very life affirming. Watching the kids pet the baby lambs & their Mums was really wonderful. I even got a wee snuggle in myself. We learned that most sheep have twins, some have triplets & even rarely have quads. Imagine having all those little legs inside you? Animals are incredible. They mostly give birth all on their own and their babies are up on their precious little legs within 20mins. All that & they are adorable.

Iron Strawberry

My silly body doesn’t properly digest iron. To combat the resultant anemia I have occasional iron infusions and daily iron supplements. My liquid iron came in a revolting mint chocolate flavour. It did not taste at all like chocolate. The best description I can give of the flavour is a gritty, oily minty nightmare. I did not enjoy swallowing a spoon of it twice a day. The arrival of this month’s prescription brought a partial reprieve; strawberry flavoured iron! Honestly, it doesn’t taste good, but it is not the horror show of the minty choc. Small victories.

Vinyl Bonding

One of the things my niece requested for Xmas was a record player. She’s 15 and very into all things retro. It came as quite a shock that most the retro she’s loving hails from my hey day. Once I got over how old that made me, I have been loving introducing her to classics from my youth. Turns out we have similar musical tastes. I have been loving sending her old albums and the long FaceTimes we have to discuss them. I was worried that I’d lose my cool auntie status once she hit high school. Alanis Morrisette, Jeff Buckley and our joint penchant for saying it how it is might just buy me another few years.

The ‘Beautiful’ Game

A funny thing happened whilst I was doing some research for a piece. The piece was on football culture, I am familiar as an observer. I grew up in the West Of Scotland surrounded by football fanatics. I know a bit about football culture. I don’t however enjoy the game. It bores the life out of me. However, during my research I discovered something I unexpectedly love. Stick to Football, is a podcast (it’s filmed too) where ex footballers talk about football. Except they stray from the topic and it’s hilarious. Especially Roy Keane. I doubt I could have told you who he was a few months ago, I am now a bonafide fan. I do have to fast forward when they get bogged down in tactics and players I’ve never heard of, but I still look forward to a new weekly episode. I even ended up reading both of Keane’s books. Those close to me find it hilarious that I, the vocal hater, am an avid watcher of something with football in the title. Hey, you can’t help what you love.

Comfort Reads

Whenever I’m feeling down I turn to literature for comfort. When my insomnia starts acting up I need a steady stream of familiar favourites. This month I have been re reading some of my most loved novels. Jane Austen is a go to, I love sinking into her world. I started the month with Persuasion & am finishing it off with Mansfield Park. You can’t beat a clever woman getting the happy ending she deserves. Also at the ready was Barbara Trapido. The Travelling Hornplayer holds a special place in my heart. I found it at a difficult time and it has brought me peace on every read. It even partly inspired one of my tattoos. Trapido weaves intricate stories with overlapping characters. A truly beautiful writer. Her only flaw being the focus on middle class/oxbridge set, but the storytelling is so good that I can forgive it. Finally, I sought refuge in Carrie Fisher. Fisher was the first writer whose words expressed my experience of mental illness. She was a genius; no one on the planet ever wrote like her. This month I choose Delusions of Grandma & Surrender the Pink, but I suspect I’ll be diving into her catalogue again in May.

What gets you through?

If you like what I do you can support me on Patreon.

You keep making me ill…

~ somethinginthewayshemoves

It gives me zero pleasure to say, but my concerns about the current government have proved to be correct. In the last few weeks I have watched aghast as Labour MPs have announced plans to gut disability benefits. Watching Wes Streeting boast about enacting Tory policies was a sickening confirmation of how far his party has fallen.

It is exhausting to repeatedly repudiate the narrative politicians spin about disabled people. However, it seems it is again necessary. I’d like to give you a simple run down on why Labour’s proposed cuts are wrong. Hopefully I can also dispel the lies they are telling to defend them.

Let’s start with what Personal Independence Payment (PIP) actually is. It is a benefit payable to those with a severe disability. It is not an out of work benefit. Nor is it means tested. The purpose of PIP is to mitigate the extra costs that come with disability and/or longterm illness. The latest stats show that the average extra cost for a disabled person is £975 p/m. Compare that to the maximum PIP payment of £737 p/m and it becomes clear that no one is living the high life via disability benefits. There are many people in receipt of PIP who do work. Those who don’t are unable to.

Labour plans are to freeze the payment (stop increases to keep up with inflation) and tighten the qualifying criteria. Their contention being that too many people receive PIP due it being too easy to qualify. They also push the idea that there are many people receiving benefit who do not need it. Labour is continuing where the Tories left off with targeting one of our most vulnerable populations. Welfare recipients and disabled people in particular are an easy target.

The assertion that it’s too easy to qualify for PIP is ridiculous. Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for PIP is an incredibly onerous endeavour. The process requires extensive disclosures, evidence and the support of medical professionals. The system already purposely discriminates against those with mental illness. Alarmingly, Labour MPs are making a lot of noise about the rise in those out of work due to mental illness; giving a big hint as to who they may go after. Expert medical opinion is already ignored when it comes to work capability assessments. Our previous government destroyed lives with denials and unnecessary reassessments. Many of which were over turned by appeal. The problem for disabled people is the toll this process takes. Applying or appealing a decision is exhaustive and intrusive. The process strips applicants of dignity, applies incredible stress and often makes people sicker. The DWP routinely reject applications from people they know qualify. What Labour mean when they say they want to make us harder to qualify is that they knowingly want to deny essential help to people who absolutely need it. The DWP’s own findings assess the fraud rate for PIP at 0%. There is no evidence to suggest that anyone is taking advantage of disability benefits. Removing PIP will not encourage people back into work. Those who are unable to work will not be cured. Those awaiting treatment will not magically jump to the head of NHS queues. Those who would like to work, but cannot find an employer to meet their accommodation needs will be in the same position. The sick and disabled are not the cause of the UK’s financial problems. Nor is it within their power to alter their situation in life. Our government know this and still choose to make cuts to a life saving benefit.

What Labour have become under Keir Starmer is shameful. The PR campaign for their benefit cuts will further stigmatise a group merely trying to survive. Starmer & friends are too cowardly to tackle the rich with tax increases, closing tax loopholes and similar policies. Thus they turn the might of the government and sections of the media against the group least able to fight back. They do this fully aware of the consequences. Disabled people will die.

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Lies and Distractions…

~ somethinginthewayshemoves

Just when I thought Keir Starmer was the most rage inducing Labour politician, Tony Blair popped his head out of whatever luxury hole he currently resides in. He decided that we all needed to hear his ableist and stigmatising opinions.

This statement is vile in a number of ways. Blair’s wilful ignorance will contribute to rising disability hate. There is no excuse for someone in his position to feed the right wing ‘scrounger’ narrative. I feel compelled to clear some things up.

Self Diagnosis

There is one reason and one reason only that there has been a rise in ‘self diagnosis’. That is inability to access mental health services. NHS waiting lists are long and actually getting a referral in the first place is laborious. Many people are instead directed to online resources and/or NHS helplines. Those who make it onto a waiting list may still have battles ahead. Most patients are offered a short course of CBT*, a modality that is not suitable for everyone and is often counterproductive. Those struggling to deal with mental illness are not researching symptoms and looking for a diagnosis for the hell of it. They do so because they are desperate. They are not adequately supported by professionals and are driven to find their own answers.

Disability Benefits Bill

Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for these benefits (PIP, DLA, ESA or ADP**) is an incredibly onerous endeavour. The process requires extensive disclosures, evidence and the support of medical professionals. The system already purposely discriminates against those with mental illness. The criteria are designed to exclude symptoms and difficulties experienced by those with common mental illness like depression or anxiety. Many people with a professional diagnosis and treatment input from psychiatric services are denied these benefits. There is zero chance of someone just saying they have a condition and being approved.

Gaming the System

Implying that large numbers of people are illegitimately claiming benefits is dangerous and inaccurate. Fraud rates for disability benefits are very low. In fact, there is a higher percentage of claimants being underpaid. The application process is exhaustive. It is intentionally stressful and intimidating. Assessors frequently over ride expert medical opinion despite being unqualified to evaluate the conditions claimants have. Vast numbers of claims are rejected only to be overturned on appeal. Contrary to the current narrative, disabled people are often denied support they are entitled to.

***

Scapegoats

Disabled people make great scapegoats. We are one of the most vulnerable demographics. Often with little emotional or physical resources to fight the bureaucracy. We have been subject to harsh conditions since the beginning of austerity. Research from the University of York found that the impact of cuts to social & healthcare were linked to over 57,000 more deaths than expected between 2010 – 2014 alone. The perception that disability benefits are easily scammed and so costly as to damage the economy further endangers us. In 2023/2004 multiple regions in the UK recorded their highest number of disability hate crimes. Being scapegoated by those in positions of power is nothing new. The Tories have been using us as a distraction from their disastrous policies and corruption for years. To have Labour join in is a tough blow. I didn’t have high hopes for this government, but this page from the Conservative playbook is still alarming. Yes, I know that Blair is not a member of our government, but he does still hold sway within the party. His comments will absolutely be associated with Labour.

Disabled people are not to blame for the crisis in our health service. The UK has been experiencing a swell in both physical and mental illness for a number of years. This is as a result of deteriorating public services and a drop in quality of life. The pandemic played a part, but the biggest culprits are our political leaders. It disgusting that the trend of pointing the finger at a vulnerable group to distract from the reality of governmental failures is set to continue.

* Cognitive Behaviour Therapy

** Personal Independence Payment. Disability Living Allowance. Employment and Support Allowance. Adult Disability Payment.

*** Department of Works & Pensions

If you like what I do you can support me on Patreon.

Jingle the shingles…

~ somethinginthewayshemoves

My absence has continued. I know, I’m full of excuses. I’m apologise. I just keep getting ill or my meds get messed up or the someone in the world does another really fucked up thing. Anyway, this time it’s shingles. Again.

Yup, I have shingles for the third time in 2yrs. I feel a little bit cursed, but my dr assure me it’s actually my immune system and stress that are the culprits. Oh and being a woman; another perk of my sex. We caught it quick, anti virals galore with a bit of luck it won’t get too horrendous. I feel shitty, but it’s manageable. In amongst all my of body’s fuckwittery there has also been a touch of writers block and a general lack of motivation. What I can offer you is some mini reviews of books that have been keeping company.

We’ll start with good, The Alienist by Caleb Carr. This was re read, but the first read was so long ago that I had forgotten most of the details. I enjoyed it so much that I dove straight into the next book in the series, The Angel of Darkness. Both are set in 1890’s NYC. They follow a group of unofficial detectives on the trail of horrific serial killers. They’re led by Dr Kreisler, a pioneering psychologist who uses his unorthodox theories to capture their foe. The rest of the team is comprised of journalist John Moore, trailblazing police secretary Sara Howard and experts in new detective & forensic techniques the Issacson brothers. I love the way emerging ideas that are now commonplace are intertwined throughout the story. They’re classic crime thrillers with intriguing characters. Incredibly engaging, highly recommend.

I am less effusive about Love Untold by Ruth Jones. The book follows four generations of women in a family. It is an interesting story, but not well executed. Some of the character flaws make it difficult to like them, which impacts the books resolution. I also find the plot reveals to be clunky. The book meanders for chapters and then has huge plot dumps. It felt very unsatisfying.

My sister lent me Three Hours by Rosamund Lipton. It’s not my usual thing, but I enjoyed it. Set during a school shooting and told from various perspectives. It is a high tension page turner with some nice twists. The characters are really well developed; the other does a fantastic job of making you care about them.

I hope to regain my mojo very soon. I am doing my best to get into the Christmas spirit. Fingers crossed!

If you like what I do you can support me here or on Patreon.

Oh Mother…

~ somethinginthewayshemoves

Mother’s Day is always a tricky one for me. I love my Mum, of course I want to celebrate her. I have a lot of wonderful Mums in my life. All of whom deserve to be spoiled. I also feel incredibly fragile.

I’ve put a lot of time and effort into building a protective shell around myself. You can’t live if you wake up everyday confounded by what you have lost. It’s always there, but self preservation is an art you can learn. There are some thoughts that I don’t allow myself to examine. I push them outside of my armour and focus on something else. Unfortunately my shell is not impenetrable. There are dates, memories that crack the surface. Mother’s Day, is obviously one of those occasions.

Mothering Sunday is a trigger in the true sense of the word. It has the power to wreck me. Realistically, that’s not an option. I refuse to ruin a special day for people I love. Still, the whole process is hard. Shopping for gifts is painful. I find myself drawn to things that I’d like to have received. I both love and envy watching my niblings express their love for their Mummies. That bond between mother and child is unique. And oh so special. All of my siblings have children meaning my Mum is also Gran. They love her so much and always want to make/buy things for her too. It’s another little detail that I dreamed of, but won’t live. Each of these pierce holes in my carefully crafted casing.

For me, the solution has been creating a little emotional distance. I pull myself back from the feelings and do what I can to enjoy the day. When I’m alone again, I let myself feel it. What’s the point of this? Just to say that if you are struggling today, I get it. It’s ok to give yourself what you need. Go gentle.

If you like what I do you can support me here or on on Patreon.

Mad Woman…

~ somethinginthewayshemoves

As predicted last week’s level of activity resulted in this week’s inactivity. I’ve been sore and exhausted. Tedious, but expected. The thing that has really been bothering me is my foul mood.

I’m extremely pissed off. Don’t ask me why because I have no idea. No one has done anything egregious. I have experienced no great wrong. Yet, each day I wake up feeling grumpier than the last. My baseline emotion is crabby.

The slightest provocation sends my simmering frustration to bubbling over. I lose a page in a book, spill my tea, forget a detail and I’m furious. My wrath is not solely directed inwards, everyone & everything annoys me. For no reason. I know my feelings are unreasonable. Consequently, it is best for me to be where others are not. I doubt all this seclusion is helpful. Turning all this negativity on myself is unlikely to produce much joy.

I’m at a loss for a solution. I’m accustomed to feeling sad or scared, but this aimless anger is uniquely discomforting. I hope it will pass. Perhaps when I’m less fatigued my mood will lift. Maybe the state of the world is getting to me. Or just life itself. Whatever the cause, I do not love it.

If you like what I do you can support me here or on Patreon.

Something to talk about…

~ somethinginthewayshemoves

Time to talk day has just be crept across my timeline. I’m hoping it’s a testament to how attitudes have changed towards what is needed in the mental health sphere that I’m only being alerted to it at 9.30pm. Despite my cynicism I clicked and perused the website.

Sadly, it’s the same old story. Like most other mainstream advocacy for mental illness, Time to talk fails in tackling the real barriers people with mental illness face. Of course it is important to dispel stigma around mental health problems. It is also great to encourage people to support friends, colleagues etc. The tips on how to approach such conversations are fairly helpful. My issue with this model is that I don’t believe it acknowledges the depth & breath of the problem. In fact, I would go further in saying that the offering a listening ear platitudes can even diminish the experience of many with mental illness.

I’m 43yrs old and I have managed various levels of mental Illness almost entire and life. In all of that time the NHS has been under resourced in the mental health sector. As the years have gone by funding has been slashed and the problem has grown. We have been at crisis status for a very long time. There has been an uptake in mental health awareness. Campaign after campaign successfully identified warning signs and urged us to seek help. Unfortunately, the help requested is most often not forthcoming.

At the moment just getting a Gp appointment can be an enormous struggle. From there referral to primary mental health services always results in landing in a very long waiting list. If you can survive that wait, the treatment available can be limited. The first line is usually a limited course of CBT (cognitive behavioural therapy). CBT can of course be effective for some issues. It is not an answer for more complex mental illness. Alongside CBT there are a variety of helplines and websites, which can offer valuable information, but do not constitute treatment. There are of course psychiatric medications. These can be life saving and do improve the lives of millions. However, they are not magic, most often they must be used in conjunction with other therapies.

A referral beyond the intial interventions already mentioned is difficult to obtain. Infuriatingly, not everyone merits a place on their waiting lists. Those who do make it are in for another privilege wait. The quality, duration & efficacy of what is available at the end of that line is unknown. There are excellent professionals, treatments & resources, but they are stretched beyond thin. There simply aren’t beds, funding or staffing to provide the appropriate treatment & support for everyone who needs it. The result is, most people are shirt changed. Problems that could be caught early are allowed to progress. Serious problems become emergencies. In short, our population suffers more mental illness and become trapped in illness for longer. Some, forever.

Beyond the personal tragedy, the social and economic toll this takes is clear. People become unable to work, care for their families, participate in their communities, they then are laden with whole new set of problems. This of course negatively impacts their mental health and round they go. More people end up in crisis with no where to turn but emergency services, which are not equipped to render proper treatment. Again worsening the situation of the individual and eroding resources available overall. Apply this cycle across the board and it becomes obvious how vicious it is. It is an enormous widespread problem that can not be solved without massive funding, recruitment and a re evaluation of government policy.

Atop those failings is the fundamental shortcomings of the message itself. Breaking down stigma is vital. However, I think the focus of these campaigns, asking how people are feeling, actually is listening to the answer and so on, don’t go nearly far enough. It gives the impression that all mental illness can be easily solved. The adverts and literature are always about depression or anxiety. They show the palatable side of these conditions; someone who has a difficult period and with a little help from their friends gets better. Images of people crying or holding their head in their hands distort the reality of living with such conditions. When someone can’t get out of bed or in the shower for days on end, when they can’t function or find relief despite those caring chats it’s a shock. A check in with the Gp & some anti depressants won’t cure everything. Mental illness encompasses a myriad of conditions. Symptoms can be extraordinarily distressing and debilitating. Some are enduring illnesses that require complex and specialised treatment. Conditions like schizophrenia, Ptsd or Bpd are rarely discussed. Instead they’re sensationalised & misrepresented in the media. Perpetuating dangerous ideas about those living with certain conditions. The fear and shame have not been dispelled. We’ve merely carved out a tiny category of ‘acceptable’ mental illness.

The recovery narrative presented in mainstream mental health advocacy is too simple. Not everyone gets better. Lots of people instead learn to manage their mental illness. Others have recurring episodes. They are still smart, loving, valuable human beings. When all society is presented with is neat stories of struggle, seek help, return to health forever expectations are unrealistic . Those who don’t follow that template become doubted. Compassion turns to thinking they’re not trying hard enough or maybe they’re exaggerating. Stigma persists. We need an informed public. Not only on the broader experience of mental illness, but on ways to bring about change. People should know why our services are failing. The power of our voices and votes must be understood. We also need education around navigating the systems that exist. Everyone should be aware of how best to advocate for themselves and loved ones. We do need to talk, it’s just a much bigger conversation.

If you like what I do you can support me here or on Patreon.

Don’t Ask, Don’t Assume…

~ somethinginthewayshemoves

The government has launched yet another useless campaign. This time they claim the aim is empowering & dispelling myths about disabled people.

In my opinion Ask Don’t Assume is a big fail. I don’t seem to be alone in that opinion. Many disabled people agree that encouraging the public at large to ask us whatever questions into pop their heads is a terrible idea. The government claim to have done extensive research. According to Minister for Disabled People, Health & Work, Tom Pursglove that ‘extensive research was with 500+ people with lived experience of disability. To be honest I’m surprised they found 500 people who thought this was a good campaign. However, with 6.3 million people currently entitled to disability benefits*, consulting 500 does not qualify as extensive.

One of the problems I encounter as a disabled/chronically ill person is maintaining boundaries. So many strangers don’t think twice of asking personal & invasive questions. Almost every time I leave the house someone will ask ‘what’s wrong with you’. In recent years Tory policies regarding disability benefits have led to more people holding hostile views. Disabled people are often viewed with suspicion, which leads to strangers demanding information from me. People who know nothing about me or my circumstances feel entitled to my private medical information just incase I am somehow ‘scrounging’ benefits. A government campaign with the tagline, Ask Don’t Assume, legitimatises this behaviour.

Further, a lot of the campaign materials include toxic positivity/inspiration porn content. I watched a video with a woman describing her disability as a strength and as something that ‘can give back’. Everyone is of course able to decide what disability means to them, but none of this resonates with me. My disabilities make my life much harder. There are lots of thing I simply can not do. Even the most mundane of daily tasks are negatively impacted by my conditions. That doesn’t feel like a strength to me. I also cannot comprehend how a disability ‘gives back’. Do my defective knees perform acts of service? Or is my daily fainting somehow contributing to a greater good? If so, I haven’t seen the evidence or benefit.

I do not believe that this narrative is advantageous to the disabled community. Our value is not tied up in how well we overcome our disabilities. Disabled & sick people require accommodations. There will always be things we cannot do without assistance or at all. Our bodies do not function like the average person. There is no amount of determination or strength that can change that. The onus should not be on us to make abled bodied people feel comfortable with that. Disabled people should not have to be grateful, inspirational or make themselves ill trying to prove their worth.

There have also been calls for our government to address their obvious failings with regards to disability rights. The Tories have spent over a decade attacking disabled people. Their continued battle to deprive people of vital benefits has done untold harm. Purposely making it incredibly difficult for those with mental illness to qualify for support is intolerable. Their persistent refusal to acknowledge UN reports on the circumstances of disabled people in the UK. Along with long-standing inequalities such as disabled people being unable to live with a partner or marry without losing disability benefits. There are many urgent issues this government could address if they truly wanted to empower disabled people. This is very poorly executed lip service.

If someone wants to share about themselves, they will do so. If a person requires your assistance, they will request it. There are very few instances in which is imperative to know the details of someone’s disability. The exceptions, health & safety in the workplace, safely accessing facilities and so on can all be handled discretely & professionally. There is never a reason to intrude on a disabled person’s privacy. This campaign does the opposite of its stated objectives. Considering it is a Conservative initiative, no one is surprised.

* UK Disability Statistics Feb 2023.

If you like what I do you can support me here or on Patreon.