‘Freedom day’

Four face masks with cartoon animals on them — Four masks from Sugar and Sloth

Tomorrow is ‘freedom day’ when the final lockdown restrictions are lifted. What freedom people are currently lacking is unclear but some things I’ve seen are – having to wear a mask, having to check in at shops and restaurants and not being able to meet as many people as they like, apparently this is oppression and we can’t keep wearing masks forever because it’s not normal.

After the first date for ‘freedom day was delayed anti-lockdown and anti-mask (or pro death) protesters marched through London demanding everything be opened up again. They walked passed open pubs, open cafes and restaurants with indoor dining and into an open shopping centre which then had to close because of the disruption they caused (I bet Alanis Morissette didn’t see that one coming).

Cases are rising rapidly despite vaccines, younger people are contracting the virus, there’s another mutation that has been allowed to spread rapidly and again we’re told that more people will die.

Freedom for disabled and chronically ill people looks quite different, the office of national statistics says that 2.2 million clinically extremely vulnerable (CEV) people were advised to shield. This meant not leaving the house at all unless absolutely necessary, many relied on government food boxes or support from local charities and mutual aid groups that sprung up during the pandemic.

People who are CEV especially those who are immunocompromised are getting told to shield, some people haven’t been out since the start of 2020 and the vaccine may not even work for immunocompromised people or those taking immunosuppressants. Since the start of the pandemic there’s been this message that it only affects the elderly and vulnerable, aside from this not being true these people are not disposable because they’re older or disabled but they’ve been throw under a bus and allowed to die in order to give other people their ‘freedom’.

The other other used phrase (apart from wake up sheeple which makes me want to stab someone in the eye) is of you’re scared stay at home and let people who want to live go out. People who are shielding don’t want to have to stay in or have to avoid contact with their partners, they don’t want to go a year without seeing anyone or not getting the medical or social support they needed and they shouldn’t have to stay in forever because others are too selfish to wear a mask or any other minor sacrifices.

July is disability pride month and once again disabled people are being left to die or excluded from society this time to please the people that are tired of the pandemic. We have to learn to live with the virus, let the bodies pile up on the street and pretend to care with gesture politics like clapping because making sure people can go to the football and trade deals with India are more important than saving lives.

July 18, 2021 0

10 things not to do to disabled people

It’s disability pride month, I’ve written a list of things not to do to disabled people.

The disability pride flag a blue, yellow, white, red and green lightening bolt on a black background.

1. Dont guilt trip disabled people for not being ethical enough. We know Bez0s is awful, we know amaz0n treat their staff like crap, we know all the issues with fast fashion and ‘unnecessary’ plastic packaging on fruit and veg. Shops often aren’t accessible and many of us don’t have the energy to kook through charity shops and second hand shops. The pandemic made people even more reliant on places like amaz0n especially those who were shielding. Plastic straws have such a negligible impact on climate change and single use plastic and that ‘unnecessary’ plastic on fruit and veg may be the only way someone can eat it (trust me we don’t like paying more because we can’t cut up a mango)

2. Do not touch someone’s mobility aids, they’re an extension of our bodies, our freedom to access the world. Grabbing someone’s wheelchair could cause pain and injury or damage it (do you know how much those cost?), moving someone’s mobility aid to somewhere more convenient might take away their ability to move from where they’re sitting, if something is in your way ask (nicely) if we’re able to move it, we don’t bite (often).

3. Don’t touch or distract a service dog, they’re working and distraction puts the handler at risk.

4. This should be obvious – don’t report them for benefits fraud because they walked or you think they’re faking it when they’re having a good day, despite what the Daily Mail says benefit fraud is not the massive problem they try to say it is. Don’t make comments like ‘it’s a miracle’ if a wheelchair user stands or walks, not everyone is paralysed or unable to walk at all.

5. Following on from 4…..don’t complain about accommodations made for disabled people, motability cars aren’t free they’re rentals with the money being taken out of benefits, yes we can often get a carer in free to events but thats because we need help and assistance, you might have to wait for the next bus or move your buggy but wheelchair users have a legal right to that space (I’m an ambulatory disabled person and that’s the only space I can safely stand so if I can move so can non disabled people).

6. Don’t make assumptions about our abilities if we say we can do something or we don’t need help don’t argue or do what you think we need.

7. Don’t assume somewhere is accessible because it has a lift or ramp, accessibility isn’t that simple, ask what accommodations we need or if we want to look into it instead.

8. Don’t take photos or videos of us in public. I can’t believe I have to write this, our appearances, behaviour, the way we interact with the world or the way we physically move may not be the same as everyone else but news flash we’re people too, don’t do this (and if you do please go suck a bag of dicks).

9. Don’t blame us for the lack of access effecting you, we can’t help the amount of time it takes for trains or buses to put out ramps, we have places to go too.

10. Don’t take advantage of things that are in place to make like easier for disabled people, don’t park in blue badge parking spaces if you don’t have a blue badge even if you are only going to be a few minutes, don’t use the accessible toilet to go for a poo or to take selfie’s, priority seats are near the doors on a train or bus because we need them to be please don’t sit in them unless you need to.

These are just a few things and nowhere near an exhaustive list, everyone’s circumstances are different and not all disabilities are visible, my comments about not using an accessible toilet or priority seat are not aimed at people who aren’t visibly disabled.

July 8, 2021 0

Managing

I don’t have an issue with taking the easier option, I’m not going to take the harder way of doing something if an easier option is available, why struggle to add something up if there’s a calculator available? Why carry a suitcase if it has wheels? Why use a tin opener if there’s a ring pull?

But when it comes to being disabled i tend to manage before going for the easier option or the option involving using aids or adaptions I’m more hesitant to do what’s easiest. Some of this is about other people’s perceptions or questions, when I first started using a mobility aid I was so anxious about what people would say because I was going from having an invisible disability to a visible one and suddenly people became aware of the accommodations I needed (not completely but more than they had) you can thank social anxiety for me not asking for accommodations before or even after I still prefer things like badges or lanyards to talk for me.

My partrner recently moved and the new flat has a bath with a shower attached but there are no handles or grab rails; at home my bath has handles and a grab rail and that’s a struggle. I put grippy duck stickers in the bath I told myself it was fine and I could manage but then I caved and got a shower seat of course I still questioned whether I needed it because I was managing without.

A white slatted shower stool in a white bathtub — The latest accessory

On Monday I used my shower stool and it really made things easier, I could spend longer in the shower, I used up less energy, was less anxious about falling over and I was able to wash my legs and feet without the risk of falling.

Managing isn’t everything, I can manage to walk unaided but it’s harder, causes more pain and fatigue and I’m more likely to fall over, I could manage at cons and outdoor events without using my crutches but it would be exhausting, my hips would hurt so much I wouldn’t be able to walk the next day and I wouldn’t be able to manage without a lot more help than I already get especially on wet or uneven ground (shout-out to my service Teffy).

Sometimes it’s not enough to just manage and if there is a way to make things easier don’t settle for managing.

September 30, 2020 0

They see me rollin…

… they won’t get out my fucking way

It’s 6:30 on Friday afternoon, I’m stuck on a busy train that smells like a giant armpit and someone is crunching crisps in my ear and dropping crumbs on my shoulder, welcome to commuting. You may have seen some news articles this week about the issues faced by disabled people with priority seat badges not being able to sit down, this is not something new and although the TfL badges are an improvement people have very selective vision when using publigc transport. Of course it’s entirely possible that people with hidden disabilities who don’t want to wear a badge may be using these seats but when every seat at the front of the bus is full or every priority seat on the train is occupied it seems unlikely these all these people have a hidden impairment

It’s not just about priority seats either but the general lack of consideration towards disabled people using public transport and general attitude that we’re a nuisance or in the case of the never ending buggy vs wheelchair debate wanting special treatment and expecting to be treated better than everyone else, people don’t even notice you they don’t look up from their phones or newspapers or even look where they’re going when running for a train. Since I started my new job four weeks ago I’ve been commuting daily, mostly to the office I’m usually based at which is a three minute train ride and a 15 minute walk from home however recently I’ve been working at our other office a bit which is further away plus traveling to my boyfriends every week. Because I’m working at different offices and not always able to use my pc I have a work laptop, like me it’s big and heavy and quite old and because of my disabilities I can’t carry it around easily.

As a reasonable adjustment work bought me a rucksack on wheels so I can wheel around my laptop, notebooks, resources for workshops and any other stuff I need. In the 4 weeks I’ve been using it I’ve had help getting on and off the trains once, the station I get off at rear work doesn’t have a lift so I have to carry it up and down the stairs. People find cases and bags on trains annoying I know it’s bulky but I have no other option unless someone wants to replace my brain, spine and connective tissue so I can carry things while staying upright and not being in pain, today I dropped my stick trying to get up to get off the train it’s metal and wood so makes a loud thud when it falls; some women sitting near me were commenting that the man sitting next to me didn’t pick it up but they were sitting near enough to reach it and didn’t help. I see people with buggies being helped on and off trains or up stairs I’ve even helped in the past but being disabled people get annoyed because I don’t run up and down the stairs or because I need to use the handrail or have mobility aids that take up space.

I know my usual audience aren’t the type of people this post is about and I’m sure plenty of you will be sitting there nodding knowing exactly what I mean so I hope that this post forms some kind of a bond or solidarity with the disabled people who take up space, who use transport, who have to try and navigate an abled world. And if you are a non disabled commenter please offer someone a seat, ask if they need a hand, done be a commuting cockwomble.

June 25, 2018 0

Body and mind

Shark bag — A picture of a shark rucksack looking anxious wih the caption “my face when people ask what happened to my arms”

*For the purpose of this post i’ll be using the word disabled to mean people with a physical impairment, I do consider mental health problems to be a disability but for clarity i’ll refer to mental health seperatly.

So my brain whirred into action last night thanks to an Instagram post by the amazing feeding of the fox. There’s a type of self harm that’s rarely mentioned; self neglect comes up in the context of depression but even I’ve never seen a discussion around the connection between disability or chronic illness and self harm or disabled people deliberately not taking care physical needs as a way of self harming. There are times when I say yes when I should say no, times when I will push myself because I don’t deserve to rest, times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, going to places that aren’t accessible or doing things when I’m not well enough.

Any disabled person will also tell you there is a big divide in the treatment of physical and mental health problems the two rarely mix and the mental health services are not always good at recognising the impact that physical disability or chronic illness can have on mental health or that the things that could benefit you mentally aren’t always possible physically (like going for a walk or having a bath), being told I should do more exercise after I’ve explained that I have chronic pain and chronic fatigue can result in me feeling lazy and making myself do things that result in pain or injury and an increase in fatigue and related symptoms. This is where the lack of understanding or knowledge of the connections between mental health and physical impairments is such a problem because for me it can be an increase in symptoms but for others it can be much worse.

Then there’s the other side the health services who treat your body as if your mind isn’t a part of it, although I’ve always been disabled to some extent in the last couple of years my mobility has got worse and I’ve been using mobility aids and dealing with more pain and fatigue.

At the beginning of 2017 I tried to access psychological therapy for long term health problems. I wanted help accepting my chronic illness and dealing with no longer being able to do the things I used to and things people my age can do, I wanted some support in balancing my physical health and mental health. It took several months for them to tell me that they don’t offer support for chronic pain, between that they rejected me because I was under mental health services (I was in the process of being discharged and they were completely different services), they then said my self harm made me too much of a risk and they said they didn’t think I’d be able to manage classroom based psychoeducation (thanks for that).

Last time I checked neither my body or my brain can function without the other yet services treating each are still very separate and mental health services are often not accommodating for people with physical impairments and often aren’t accessible there’s also an assumption that if you’re disabled and have mental health problems then of course you’re depressed because you’re disabled because who wouldn’t be?

Ableism unfortunately is still well rooted within the medical profession and the even within the disability communities there is still too much separation of physical impairment and mental health issues.

January 16, 2018 0

Rocket Science

If you can’t here expecting a review of a lush bathbomb then sorry to disappoint you this is a rant about mental health services, maybe try Lulu or Jen

A blue rocket shaped bath bomb made by Lush cosmetics

I am not a frequent flyer, I don’t have air miles I haven’t been on a plane in years and the last time I went abroad was to Edinburgh by train. Despite this I and other in a similar are labelled frequent flyers or regular attenders (this is meant to be the better term) because we find ourselves in situations where our mental health has got to a point when we need support and intervention often requiring medical attention as a result of harming ourselves.

Self harm isn’t something people do for fun or because they enjoy being in a&e it’s because emotions become overwhelming (and this is a very simplified explanation of a complex issue) and as I’ve written before the treatment once you’re at a&e is often not pleasant or equal to the treatment of people going in for accidental injuries with long waits in loud and busy waiting areas and psych liaison who at most may give you a leaflet and discharge you at 4am with no way of getting home.

It’ll be no surprise that this latest rant is inspired by a crisis concordat meeting this morning, two hours of frustration at having to bite my tongue in frustration at the language used and throwaway comments about people with personality disorders and the triggering content in the suicide prevention information listing the age groups and sex of people who ended their life and details of methods chosen again separated by sex.

Sometimes I look at the people sitting around the same table as me and wonder how they can be so oblivious to the blatantly obvious, do they really not see the link between the high numbers of people in Richmond who come into contact with the street triage team and the above average number of people detained under section 136 of the mental health act and the complete lack of crisis services in the borough? Are they actually surprised that people who are distressed or in crisis don’t want to travel an hour or more to an area they may not know to get support? And may not have the means to do so? It really isn’t rocket science or a difficult connection to make, I don’t exactly consider myself the sharpest tool in the box yet I can see it so why can’t they?

Aside from Mind since I’ve been a part of the crisis concordat (around 2 years now) and the outcome based commissioning program (coming up for 8 months) only one person has actually asked me about my experiences of a&e and the treatment I receive it still seems like a radical idea to most of the people involved to actually listen to someone who’s been in the very situation they’re talking about. Despite feeling like i’m banging my head against a wall (thanks Steph) and frequently coming away wondering if being there serves any purpose I still keep going if only to play my own version of crisis bingo.

November 29, 2017 0

BoPo or BoNo (body positivity and disability)

A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox