Ableist disabled people

There’s several disabled people who are inherently ableist.

Be it wheelchair users, thinking the disabled toilet is only for wheelchair users or the blue badge parking space is only for wheelchair users.

Or be it disabled people who are able to work full time and not claim benefits hating on those of us who need to claim benefits and concluding that we must just be lazy.

And there’s nothing I hate more. Whilst I get that a lot of the time these feelings of hate towards other disabled people comes from frustration (we all know that there aren’t enough blue badge spaces in most car parks or disabled toilets in most buildings for demand). It’s harmful and perpetuates hate to be saying these people aren’t disabled or aren’t disabled enough if they need to access an accommodation or can’t work so need to access benefits.

There are many reasons someone may need a blue badge space, and specifically the extra space around it. Crutch, walker, and rollator users struggle to get out of the car without extra space and so can lower limb amputees, depending on the type of prosthetic they wear.

Equally, there are many reasons one may need a disabled toilet. If you have a stoma, need to catheterise, have a walker, an assistance dog, or need the grab bars to get on and off the toilet.

And in the UK parents may need this bathroom because it’s often the only baby changing toilet space.

But these people can’t seem to empathise, can’t seem to possibly comprehend that wheelchair accessible doesn’t mean wheelchair user reserved.

There’s one thing getting annoyed at people genuinely taking the mick. Parking in a blue badge space without a blue badge for example.

But there’s another thing saying that people with other disabilities shouldn’t be entitled or outright calling them lazy and entitled.

Rights for all disabled people will never exist if we’re fighting against each other over whose worthy and who is most disabled. Disability takes many different forms and wheelchair users are a minority of disabled people.

Life as a wheelchair user isn’t Bleak

There’s a clip of a Nicolas Hamilton video floating about on social media in which he says life in a wheelchair was bleak and the way the clip was clipped insunuates that people who use a wheelchair who can walk are just lazy. Whilst for him this is how he felt (internalised ableism is real and we are not exempt from it) and for him it was possible to not need to use a wheelchair this isn’t the case for every wheelchair user.

The interview is pure inspiration porn and I am not here for it. Imagine how it would feel being young, maybe looking up to him, being a wheelchair user and hearing those things. It would hurt. A lot. I know it would. Because I felt that pain. The words he said combined with cheering and clapping from able-bodied people.

The realisation that able-bodied people do think life in a wheelchair is bleak.

The reality couldn’t be further from that.

Yes, using a wheelchair is hard. The world isn’t accessible and ableism is a real issue in todays society,

But my world has grown exponentially since getting my active manual chair. I was dreading leaving the house. Walking was excruciating. I’d get home and go into pre-syncope the second I got through the door. I was using all my energy trying to stay upright on jelly legs and a dizzy brain, trying to ignore the pain. I was left having to make dinner out of junky snacks because I couldn’t make it down to the kitchen. My crutches would put too much strain through my shoulders if I had to put a lot of weight through them. My world was small and every outing excruciating.

But then I got my wheelchair and I can now enjoy being out of the house because my energy isn’t going into trying not to fall over. I can feel the endorphins of moving my body again, going for a walk or a run wasn’t possible. Heck I’ve not been able to run without falling over for 5 years.

I’ve been to gigs, ran workshops in my voluntary role, experienced nature, met up with friends, been out with family and had my siblings push me as if I’m on a rollercoaster ride. I’ve experienced the joy of freewheeling down hills. I’ve felt the sun on my skin and wind in my hair. I’ve been to conferences, enjoyed the occasional first-class train upgrade. I’ve been able to enjoy art gallery’s and museums because I come with a seat. I’m not using all my energy on masking my pain and trying to stay upright.

My quality of life is better and I can truly say I love my wheelchair.

Now I would also like to not have to use it for shorter distances, but I am accepting benefits especially when it comes to days out and travel. And I am realising it will most likely always be needed for days out where there may be a lot of walking, standing, or queuing. And I’m okay with that! My wheelchair allows me to enjoy life.

My life is not bleak. And I am not lazy because I technically can walk but use a wheelchair.

Walking doesn’t provide me with my best life. It’s painful, I can’t feel my legs if I’ve been on my feet for more than 10 minutes, I often struggle to pick my feet off the ground and can fall. It takes my energy out for days.

Walking whilst technically possible isn’t practical.

And doing the thing that provides you with your best life isn’t lazy. It’s brave.

Why people think disabled people are faking

When you’re scrolling through social media, especially Tiktok, think about the illness fakers’ Reddit and think back to shows such as Benefits Britain, as well as looking back to experiences in life it becomes clear that a lot of the time the automatic thought is that someone is faking their disability, or making it seem worse than it is for the perceived benefits. If someone has a disability that isn’t obvious, like a missing limb people struggle to believe or have sympathy. This is especially true if that person is a woman, a person of colour or part of the LGBTQ+ community. I thought I’d delve into the history of this phenomena and discuss the reasons why this may still be the case today.

The perception that someone is faking their disability has been around since the old poor law was created, aiming to support disabled individuals. It is not a new thing and in fact, deeply imbedded into our society and culture. This perception increased in the 18th century when the news put out led to increased stereotyping of the disabled. There were attempts to differentiate the genuine from the fake and the good disabled and the bad disabled. This is a very black and white perspective on disability and it led to calls for welfare reform to be based on firmer medical principles and proposals to get the sick and disabled into the workforce. 

The negative image of welfare claimants still exists in society today. It is inflamed by media and political parties demonising benefits claimants and stating that they will be tough on benefits in order to win votes. The result of this is also a negative perception of disabled people, especially those with disabilities that aren’t visible to the naked eye and the belief that people are faking disability for perceived benefits. 

It is assumed that disabled people are lazy, milking the system and living an easy life on benefits. People also love to try and make things a competition. They feel bitter about the state of the country and will comment things like I have x,y and z condition and still work full time. As if disability is a monolith. Even within the same condition there is a lot of variation in severity. Just because one person has found a job that works for them it doesn’t mean that everyone can! Take ME/CFS, for example. Some people are bed bound and reliant on feeding tubes, others are able to work full time with difficulty, and there is a whole range of severities inbetween. People seem to think that just because they have chronic pain and can work or because they know an amputee or a wheelchair user who can work, then everyone can work. This is simply not true. There is so much complexity and grey area within disability and so many things that affect capacity to work. It’s also important to note that we often mask our symptoms and some of us have become experts at it! This takes a toll. With energy limiting conditions there is always payback from activities. It is that payback that is often not seen. We might be able to do something one day then suffer dearly for it the next few days. 

People struggle to understand the concept of payback and fluctuating disabilities and instead seem to jump to the notion that someone is faking their disability for the percieved benefits. 

And part of it, is that after many years of Tory rule, the country has been messed up so much that many people are struggling despite working full time. They feel jealous of disabled people and others claiming benefits, of the cost of living payments, the council tax discounts, the free dental care (if you can find an NHS dentist) and free prescriptions. They think disabled people who are unable to work have it good. Have it easy. They don’t realise that people claiming disability benefits are not living a life of luxury. PIP is meant to help manage the extra costs of disability. The maximum you can get in PIP a month is around £700, however scope has stated it costs around £900 extra a month to live as a disabled person on average. And PIP is notoriously hard to get, plus the majority are not eligible for enhanced rate daily living and enhanced rate mobility. 

A lot of this fake claiming perception does come from bitter people believing we have it easy. But the benefits system has caused suicide attempts, both successful and unsuccessful. It is unnecessarily difficult, confusing, stressful and long. People often end up getting into debt whilst waiting for payments to come through! And if you are disabled and unable to work or only able to work a little bit, so claim Universal Credit, you are unable to save towards a mortgage and if you already have that mortgage you are unable to claim housing element payments towards it. This means being stuck renting, potentially for life. 

I think a lot of the fake claiming or exaggeration of disability perception also comes from people not understanding that when it comes to disability benefits, the assessments are based on what you can do over 50% of the time. Most people have good days, bad days, or even good hours and bad hours. Just because you’ve seen someone walk more than 20 metres on occasion, it doesn’t mean they can do that all the time! And you don’t see the toll that will take. I think people also don’t realise that we may use aids, or adaptations to do things! For example, I struggle to hold physical books due to thumb pain so the vast majority of my reading is on my kindle, with a pop socket so my thumb doesn’t lock, or via audiobook. I know that’s quite a simple adaptation but the same goes for many areas of life for many disabled people. We find our own, often unique ways of doing things, or we have other people to help us along the way! Even paralympians with conditions that fluctuate receive comments that they are faking! Because people just can’t understand how someone can do a sport with that disability. When it comes to my conditions, and my main one being hypermobile ehlers danlos I don’t understand it fully myself. Why I can get injured doing the most basic of tasks but also climb (although not very well at the moment!). Disability is confusing and I do understand that. I think generally as a community, to those people who are willing to listen we need to get better at explaining why some things may be more difficult than others and what aids and adaptations we use. And those that clearly are just out to troll and not willing to listen, they are not worth our often limited energy. 

There is also a belief that benefit fraud is higher than it actually is. Not helped by the media and the DWP producing adverts demonstrating a crackdown on fraud and encouraging you to report your neighbour. This makes people think fraud is a big issue. The reality is when it comes to disability benefits, 9 in 10 allegations of fraud given to the DWP have been proven to be unfounded. Disabled people, innocent disabled people are at risk of being wrongly reported for fraud. This can result in a highly stressful time, and lead to people entering poverty and their conditions worsening. 

This fake claiming accusation is a big problem, I think everyone who talks about disability or chronic illness on chronic illness has received the “there’s nothing wrong with you” “your playing the system” “If you can film a 3-minute tiktok you can work” comments before! It’s a risk of sharing and trying to raise awareness in this climate.  Especially if you have certain conditions that are deemed as “trendy” in the chronic illness space, i.e. Heds, POTS and co.

As someone with H-EDS, it certainly isn’t a trendy diagnosis or enjoyable to experience. If I could get rid of the full body manifestations of EDS I would. Maybe it seems trendy because there is more awareness so more people are getting diagnosed, but no one wants EDS. What people do want though, if they have been undiagnosed for many years is answers, a sense of closure, understanding and a path to move forward with their life. Be that answer EDS or something else.  

Whilst around 20% of the population are disabled, I don’t think society realises this or has a real understanding or reference point of what disability is, besides media representation, and people with very visible disabilities. This means a lot of misconceptions are held about what disability is and what it looks like and how it affects someone because disability isn’t something that is widely talked about or something children are taught about in school. I know I was very ableist, especially internally until I realised I was disabled, because that’s the environment I was raised in. As children, we don’t know any different, as adults we have a responsibility to listen to disabled voices and learn from that.  

The dreaded PIP review

I got a text through the other morning with an assessment date for my PIP review. I always find it wild that they don’t give much notice for these as if we just have to bend to their every command. The time does work for me for this assessment, but I can imagine it could be hard for people who are in work, especially those in traditional 9-5s to make an assessment on 2 weeks’ notice, depending on location, and how easy it is for them to get a day or a half day off.

All of my benefits-related appointments and assessments have had 1 or 2 weeks notice. Sometimes slightly less. As someone who last year had around 80 medical appointments, there were times I had to change a universal credit appointment and hope the person who saw the message in my journal was understanding and not going to threaten me with a sanction. It’s hard to get an appointment with the NHS these days and I ain’t gonna be waiting longer if it’s an important one just because Universal Credit decided they want to speak to me.

But anyway, back to the PIP. My assessment this time is over the phone. This makes things substantially easier for me. Having a suspected CSF leak I struggle to be upright for prolonged periods and find not only does this result in my pain, nausea and dizziness increasing but also my brain fog. It being over the phone means I can do the assessment in a horizontal position. I won’t have to deal with the physical payback of being upright for 2 hours straight and I should have a functional brain.

Whilst the circumstances of this assessment are more possitive and accessible to me, that doesn’t mean I’m not feeling very worried and whilst it won’t be as physically draining, it will still be mentally and emotionally draining.

Benefits assessments feel like an interrogation and it often feels like no matter what you say it’s the wrong thing. They can turn so many things against you with PIP. A few examples that I have experienced/heard of:

• She has a degree and therefore has no cognitive impairment (My LLB and my LPC MSc were achieved when I was less disabled and didn’t need benefits. I also used text to speech software to help with reading burden and accomplished a lot from bed).
• She can hold a bag and so can prepare a meal and shower (the bag had nothing in other than my passport and appointment letter).
• They have a pet therefore they can walk fine and prepare a meal (this doesn’t take into account that someone else may walk the dog or that they use their mobility scooter or wheelchair to do so or that feeding a dog dog food is easier than preparing a human meal.)
• They walked this far once and so can do this every day (This just isn’t the case for those of us with fluctuating conditions.)

My assessment report for my initial award that went to the tribunal was also incredibly contradictory.

PIP assessments feel like walking into a trap with no successful way out.

My tribunal resulted in a suicide attempt because it was a 2-hour grilling and then I was told I would find out via letter in the post, with no timeline. My autistic self can’t deal with uncertainty and the grilling and general negative attitudes of some of the panel was really hard. I ended up breaking my tangle beyond repair during my tribunal.

So, understandably having to go through the assessment process again is terrifying. What if they decide I don’t need PIP. That I’m not eligible because of whatever shit they want to assume.

I also feel like it’s harder to get PIP when you have misunderstood conditions and live alone. They seem to think just because I am coping without help I am coping in a normal manner.

But the reality is I shower once a week ish, can’t wash my hair from my bathboard but also can’t stand in the shower because dizziness and don’t have the balance to easily get in a bath without the bathboard. I can find ways around getting in the bath if I’m away but I can’t just step in and out. I also in an ideal world will stay in a hotel with a roll in shower and shower seat rather than a bath. And if I’m staying somewhere with my family and don’t have access to a shower seat wipes are a saviour, I either don’t shower or sit on the shower floor. I find showering exhausting too and therefore can only shower in the evening or I’ll end up losing my day.

They see someone who eats and assume I must prepare meals when I live off takeaways, ready meals, and snacks.

They assume I don’t have executive function difficulties that make getting dressed and showering difficult, as well as doing physiotherapy because I managed to get a degree.

Because I’ve learnt to mask pain they don’t understand that walking is excruciating.

PIP assessments are degrading and draining, especially when you have trauma relating to medical stuff and not being believed, or understood or listened to.

PIP also isn’t just about the money. It’s about it acting as a passporting benefit that helps you get blue badges, bus passes, disabled person railcards, and accessible concert tickets. Some venues will only accept PIP/DLA as evidence, others use things such as an access card.

But equally the money also helps us improve our quality of life. I know if mine gets renewed I’ll feel a lot more comfortable using a portion of my savings on an electric attachment for my wheelchair. I’m looking at getting my hands on an ex demo batec or a tri-ride. This would mean I could explore nature again and more easily navigate the hilly terrain that we have in the north of England. It would also help protect my shoulders, thumbs, and wrists when going longer distances in my chair. If I had an electric attachment I could potentially get a dog once I’m well enough to have a job and not live in a shared house. (It’s HARD finding housing that will accept you when you are on Universal Credit due to no DSS rules).

The money also helps us day to day. I use my PIP to fund my LDN and medical marijuana. I have also used it to pay for private physio appointments and to allow me to buy pre-chopped fruits and healthier ready meals as well as the Pepsi max fund because that stuff is fab for my nausea. It has allowed me to justify investing in a collection of fidgets to help meet my sensory needs and means I can afford taxis when needed. It’s meant that when my headphones broke I could replace them.

It’s given me an extra financial cushion and evidence of a disability that allows me the accommodations necessary to access various things and enjoy my life again.

Living with a disability is expensive and PIP helps bridge that gap.

But the process is degrading, inhumane, and long.

I hope this time for me it will go smoothly but if not I’ll have to deal with that at the time.

The problem with the biopsychosocial model of disability

The biopsychosocial model is a model of health and disability that states that illness is a result of interactions between a range of factors, including biological, psychological, and social interactions. On the surface this makes sense. Of course our conditions and the impact of them aren’t purely physical. Society isn’t accessible which is a social factor increasing our level of disability, and affecting our ability to interact with the world. It is also common to have comorbid mental health difficulties with chronic illness and this can make it harder to do the things we need to do to stay as well as possible. For example, eating healthy and moving as able. 

The problem comes when practitioners and society seem to ignore the biological or the possibility of biological factors being involved and use the model to apply blame to the patient and make it feel like a moral failing. For example the BPS model suggests that pain is a result of bodily damage as well as patients attitudes towards the pain. For example thinking that there is damage may increase the pain even if there isn’t damage. 

The problem with this? 

The problem is damage won’t show if the right test isn’t being done. And in the world of a stretched NHS, alongside medical bias against women, autistic people, trans and non-binary individuals, and ethnic minorities this can be a really dangerous perception and can lead to people receiving treatments, such as graded exercise therapy which force people to work above and beyond their healthy baseline and cause their health to get worse. 

I have Hypermobile – Ehlers Danlos Syndrome. I get pain in my lower left leg so intense that I want to chop it off. No one has ever thought to scan it to make sure nothing is actually wrong. In fact, the only time I’ve had a scan was on my knee after an injury but by the time the letter came through with a date the injury had healed. 

I have suspected endometriosis but couldn’t access the surgery to diagnose because when I was under gynecology and 19/20 they insisted that I was too young. 

I currently potentially have a CSF leak. 20% of people with a spinal CSF leak have no findings on their MRI and a CT Myleogram is understood to be the gold standard of diagnosis but guess what, I can’t access that and they are insisting it is just chronic intractable migraine. It doesn’t feel like a migraine and migraine isn’t as painfully positional. 

It suggests that people can’t do things because of false perceptions in their heads. When any perceptions I have about my health, what I can and can’t do, and what will make things worse come from lived experience. Not whether I think there is damage or not. It comes from trial and a lot of error.  What I can and can’t do often fluctuates over time too, it’s not fixed it varies with the ebs and flows of my conditions. But even during a good period, when I am well-conditioned and living almost normally, I can’t ice skate without my knees swelling like cantaloupes. That ain’t in my head it’s a sign of real damage and these limits are often dismissed via the BPS model.

The BPS model gives the NHS an excuse to fob chronic pain patients off with meditation and happy thoughts, when in fact medication is often necessary as well. 

The Biopsychosocial model has also been used negatively against people with chronic illnesses that have no organic pathology that is currently determined. For example ME/CFS, IBS, Fibromyalgia, and Functional Neurological Disorder. These conditions are often neglected under traditional medical care and many courses utilise the biopsychosocial model claiming to provide a cure for these conditions, among others. These courses can often be thousands of pounds and often blame the patient if they are not getting better and use this blame game for anyone who critiques them. Preying on a vulnerable patient population like this, who will often feel they need to try everything to get better is harmful. It’s even worse when you consider that often these patients are often unable to work full-time, or at all and are often struggling for money. 

The Biopsychosocial model and some of the discourse around it can also help explain why there has been a lack of research progress in successful treatments for ME/CFS, IBS, and Fibromyalgia, among other conditions. Instead of looking at the potential biological causes, there is an overemphasis on the psychological. Patients end up being left with nothing or harmful treatment that makes them worse as a result. 

It’s worrying that this model can repeatedly be used to psychologise sometimes even biological diseases. That patients are being told that they are in pain, fatigued, dizzy, or having visual issues and muscle weakness because they have created an expectation that this is going to happen. When in reality we didn’t create an expectation the first however many times it happened and often can forget that things may increase symptoms if it’s something we don’t do regularly. For me, it’s sitting in a car. I can’t support my head if I’m in a car for too long and I would always forget about this issue but it would still keep happening. But apparently, my head literally flopping back uncontrollably is all in my head. There is a lot of victim blaming within this model and a feeling that people are saying we’re disabled because we choose to be. 

A bigger problem with the Biopsychosocial model of disability is that it was championed and developed by the private health insurance sector in America, and underpins the work capability assessment in the UK, which is draconian and not at all a measure of whether you can work.  In these circumstances, the model can be used to say that the reason the disabled person can’t work is because of negative attitudes. This model has also been used to justify benefit cuts which have harmed many disabled people. There can be an over focus again on the psychological elements and a lack of consideration for the medical reasons as to why someone may be unable to work, alongside the fact that finding a job that suits your needs when your disabled is hard! It has been argued that this is used to deny people the support they are entitled to. Not getting that support can have further negative health outcomes, such as increased mental health difficulties, or increased physical health difficulties as a result of not being able to afford to live. The BPS model in this context, also contributes to society considering those on benefits are scroungers. 

The theory fails in terms of risks of over-psychologising and victim blaming because no one defines the relation and weight of each of the factors in disability. Making it easy to be misused to harm and exploit vulnerable people. 

Whilst of course, biological, social, and psychological factors do affect our health, it is no wonder many of us are triggered into fight or flight by this model when it is often misused to our detriment.

Thoughts on Unsolicited Advice

This is something I think everyone with a chronic illness experiences multiple times over.

“A friend of a friend of a friend tried this and it worked for them”

“I saw this on the news maybe give it a go”

“A distant relative swears by this”

Today my mum is trying to make me try ear seeds despite the episode of Dragons Den that a specific brand was featured on has been taken down and they are placebo at best.

And she won’t let it go.

Whilst maybe in her head she thinks she’s helping she literally read an article declaring it snake oil and used that to say ooh try this.

That is not what I want popping into my WhatsApp inbox. Especially when I can’t explain my perspective as to why not or at least why not now because I know she’ll make me feel worse about myself if I go against what she things. She always does.

And me not wanting to try ear seeds isn’t me being against any advice anyone gives. I’m not. In fact, I feel like I take things to heart too much and try to please everyone and I have in fact tried things that have been given as unsolicited advice before after doing research into the thing.

My mum giving me unsolicited advice and always asking when I will get better cement the long felt feeling that who I am is not okay. It’s hard to explain why I have felt like this for most of my life. It’s a lot of things. The being forced into acting neurotypical, to be seen and not heard. Otherwise, I’ll get told off. Being told I’ll never make friends at university, being told I’m a nasty piece of work. Her trying to manipulate me into not using a wheelchair even though it’s the best decision for my quality of life. Treating me as if I’m some kind of psychopath because I watch Criminal Minds. Seeming to be more concerned with how she looks as a parent than my welfare when it comes to mental health/neurodiversity and chronic illness.

It makes me feel hurt. Like however hard I try I can never get approval. And when it’s family who are meant to be understanding, supportive and accepting it hurts even more.

I also take things to heart more than most I feel. The pressure to be seen to be trying everything to get better otherwise I don’t really want to get better. Trying to manage conflicting advice and conditions with conflicting requirements is already overwhelming but when you feel desperate for approval from others and also feel like you should be trying all the things. It’s a lot to contend with. Especially with the knowledge that you can’t try all the things. No one can. Not literally everything out there that could potentially help with the chronic illness they’re diagnosed with.

The thousands of pounds I’ve spent on trying to improve my quality of life, manage symptoms and improve my health over the years. Probably tens of thousands if I am being totally honest.

When people give unsolicited advice people don’t understand the financial implications.

But it’s not just financial, it is an emotional impact. Every time you get put on a new medication, try new supplements, try a new diet, alternative treatment, physio regime you put expectations on it. You have hope, you think maybe this is going to work. And every time it doesn’t work it hurts. It feels like being punched in the gut. Like you were silly for even thinking things could get better, or at least that they could get better enough to be able to work enough to not rely on the DWP.

Because that seems to be the golden sign of acceptance in society. The golden sign of acceptance by my mother.

But why does that have to be the goal? Because that goal. The one of recovery enough to live a life independent from the state is unrealistic for so many disabled people.

Why can’t we just live our lives without judgment? Without unsolicited advice? Without questioning? Why do our lives get so much scruitiny just because we are disabled and unable to work a traditional job, or find that job that will accept us?

It’s not fair and it’s really hard to deal with. It’s no wonder a lot of people with chronic illnesses also have co-occurring mental health conditions. It can take a lot of resilience to survive through all the judgment. And it undoubtedly has an impact on people’s mental health.

I wish people could understand that unsolicited advice is not helpful. Sometimes advice is not wanted. And if it is wanted just shoving everything and anything that may help without doing a smidgen of research is overwhelming.

But they don’t seem to get it. They seem to think their helping when actually it’s harming.

On navigating the train as a wheelchair user

The trains are somewhat a nightmare in the UK at the moment. And this can sometimes make navigating them a little tricky as a wheelchair user.

In the UK you are meant to book assistance in advance and then it gets approved and should be provided.

However assistance relies on trains being on time, sufficient staff and the staff being able to find your booking (Yes they often struggle to do this)

So, it’s fair to say sometimes it can be a tricky affair and lead to a bit of improvisation and trust that you’ll figure it out somehow.

I have not been met with a ramp before and had other passengers help me on and off a train. I’m ambulatory but I don’t have the balance to be able to lift my chair onto the train and myself. Especially when there’s a big step and/or gap!

Or more recently I had to flag down a staff member when they were doing a crew change at my stop so I didn’t end up in Edinburgh. As beautiful as Edinburgh is, I did in fact need to be home that evening because of a medical appointment the next day.

I also often travel routes that require a trip between main London train stations using the underground. It is fair to say that the reality is it takes longer if you are unable to use the stairs and/or escalators. I used to hurt myself by taking the stairs for this reason!

The number of lifts and size of lifts at key stations is not sufficient for demand a lot of the time. Between people with buggies, suitcases, wheelchair users and other mobility aid users along with people who pay have invisible disabilities there is simply not space for demand.

This can lead to the given connection time not really being enough, depending on delays and how busy it is.

As a young person I also often find I am the youngest in passenger assistance areas which feels very weird at times to be the youngest by multiple decades in a space.

Needing passenger assistance also leaves little room for a spontaneous trip! Whilst that isn’t really my thing, I know if I lived with my family having to book 12 hours in advance if I just wanted to get the train to the gym would grind my gears.

Nevertheless, I still find using the trains as a wheelchair user (especially in big stations or for long journeys with changes) easier than walking. Walking is excruciating for my lower body and can massively intensify the pressure in the back of my head and vestibular issues. Using crutches may mitigate some lower body pain but they can put too much strain on my shoulders and certainly more than my wheelchair does!

This is something that able-bodied people often struggle to understand. Yes the wheelchair has it’s inconveniences and it’s stresses. But for me, they are worth it for the pain reduction and ease of movement I get as a result. I’m not dreading walking down long platforms, partially dislocating shoulders by carrying a heavy rucksack on my back (it only needs a waterbottle to do that). It’s better than not having to deal with the lack of seating at busy stations because I come with a seat. Or worrying about not being able to find a seat on the train.

Whilst traveling isn’t necessarily a smooth experience with a wheelchair, it’s a significantly more comfortable one.

Vulnerability as a visibly disabled woman

As a female it’s drilled into us from a young age that we shouldn’t go out alone at night. Or after dark. Which in the UK is 4pm in the winter. And if we do have to go out alone after dark we should absolutely not look like we are asking for assault, by avoiding revealing clothing, we should hide any long hair. We’re told to be on the phone to someone, preferably a man when walking home. I would regularly phone my dad on my way home from places before I used crutches and now a wheelchair and had both hands. We shouldn’t be using headphones if out in the dark, we should hold out keys between our hands in case needed as a weapon. We should stick to main roads. If we don’t do this and anything happens we’re at risk of victim blaming.

We are taught that we are vulnerable without disability. I personally have felt more vulnerable since becoming visibly disabled. When I lived in my own apartment I would feel anxious leaving/entering with my walking stick or crutch out because it was a sign that screamed vulnerable woman living alone.

Fast forward many years I now feel more vulnerable if I am out alone at night. Because yes disabled people need to be out when it’s dark too sometimes. As a wheelchair user, even though I have fold down push handles people will push your chair thinking their helping. Whilst most of the time this is totally innocent behaviour it’s scary. There are also people who feel the need to just randomly come up to you and touch you. Yes even in broad daylight.

The other day it was 11am on a random Tuesday and I was on what is normally a fairly busy road. A drunk man decided to start pushing my wheelchair and despite my trying to tell him to get off me he wouldn’t until he got to where he was going. I was trying express that I didn’t want him pushing me, I would have looked obviously uncomfortable in the situation to passerbyers. Luckily it was an innocent situation but it was terrifying. And this could easily have been a not-so-innocent situation. It has left me feeling scared, especially entering the winter months where I am likely to be out after dark more so than the summer months. In summer it was easy to not leave the house after dark. In winter it gets dark so early that I could foreseeably be traveling back from medical appointments etc. I am new to independently using a wheelchair so this is my first winter with the what if I get cripnapped in the dark fear. Although, as a woman I often have the fear especially when not on main roads.

Knowing someone could just grab my wheelchair and not knowing their intentions is scary. Knowing I am autistic and am more likely to shut down than I am to scream and shout is scary. Following the 11am incident, I am contemplating getting a rape alarm. It may be overkill but at least it makes a loud sound if needed. I’m also thinking of sticking spikes on my push handles. Whilst they are folded down unless I’m with someone pushing me, this doesn’t always discourage people from just deciding to push me without asking. I have also looked up wheelchair self-defence, to try and have a few things to think about doing if I ever end up in this situation again and am worried about my safety.

But still, I am acutely aware of my extra vulnerability. My wheelchair is a sign that says easy target. And that is a scary thing to deal with.

On Wheelchair Maintenance

When you purchase a wheelchair you need to maintain it to make it last as long as possible. There are also regular things that need doing like inflating tires to increase efficiency as a manual wheelchair user and reduce risk of punctures.

I had to pump my tires up for the first time the other day. The last wheelchair I owned had solid tires so this wasn’t something I needed to think about or learn. Broadly pumping the tires on a manual is the same as pumping up bike tires.

Except, I never learned how to pump up bike tires because when I had a bike as a kid it was something my parents did. And me being stupid when it comes to practical tasks was genuinely staring at my pump in confusion. Not knowing what all the valves were for and which one to use.

I literally had to phone my dad for an explanation of what to do because I’m stupid when it comes to manual tasks. Book smart here not practical hands-on smart. I was also scared of doing it wrong and letting all the air out of the tires. Which fortunate for me I have family who have bikes and could explain.

I have however had to watch youtube videos for other wheelchair maintenance issues such as cleaning the front wheels and taking them off to get out all the hair that gets caught up. And more generally consult the internet to know what needs doing.

It had me thinking that when you get a wheelchair there should be some offer of wheelchair maintenance classes. If someone becomes a wheelchair user due to a traumatic spinal cord injury they go through rehab and learn how to use the wheelchair to get from A to B. Or at least some people do! But there’s no such thing as classes on how to maintain the chair which is also important for safety and longevity! Wheelchairs are expensive pieces of equipment! It would be great if wheelchair users had somewhere or someone to go to to teach them how to do all the things. Even if it’s just for the first time they need doing, so this can then be done independently or with support from a carer.

I know from experience, having not had a traumatic injury and maybe not having the same level of support when it comes to getting used to a chair I have felt lost at times with the reality of navigating wheelchair using life, inaccessible terrain, taxi’s, buses, trains. Even things as simple as whats the best way to pick some things up from a shop! I do most of my food shopping online because I find big supermarkets A LOT with the flourescent lighting and when I started using crutches it was my only option. Personally I find shopping with my wheelchair 10x easier than with crutches! But occasionally these things come up.

It’s a lot of trial and error and learning and sometimes embarrassing mistakes. I didn’t hold my wheelie well when I bumped down the step to get out of the pharmacy the other day and ended up awkwardly stuck. I have done this successfully before but sometimes it just goes wrong. I’ve also experienced a lot of trial and error and hope for the best when it comes to carrying starbucks, getting on and off the says it’s accessible but not so accessible metro system and so many other things! Wheelchair maintanance is just another trial and error figure it out for yourself.

Let me just say that with so many of these things, I would have been lost without social media, Reddit and YouTube. The online community really is everything sometimes when it comes to navigating disability!

But for things like maintenance that for me my brain just does not get I would definitely benefit from in-person classes where someone can guide me through it slowly and step by step at my pace! Sometimes I find videos confusing and difficult as some parts of maintenance will depend on what chair you have and what pump you have to pump up tires.

If I was a quicker learner of maintenance I would definitely look into setting up classes myself! But I am not and I am in fact in need of classes.

Unwelcome things people have done to me since becoming a wheelchair user (And what to do instead)

1. Touching me on my shoulder without consent. I’m not being funny as a woman who was out on her own having a man I have never seen before in my life come up and touch me on the shoulder was very scary and made me feel unsettled. Don’t touch us without consent. You wouldn’t randomly touch an ablebodied person so don’t do it to a wheelchair user.
2. Pushing my wheelchair without asking and without consent. Again very scary, especially when out on my own. I have fold-down push handles to try and prevent this but it still happens sometimes! Just don’t. Ask if I need help but if I say no, don’t insist and respect my choice. You wouldn’t pick up and move someone who isn’t a wheelchair user so don’t do it to us!
3. If I am with other people talking to them instead of me. I am perfectly capable of speaking for myself and would appreciate it if conversation was directed to me rather than my parents/younger siblings/friends. Not all wheelchair users are also learning disabled. And whilst there are wheelchair users who are, you should still try to include them as much as possible and not assume.
4. The pitying look/tone of voice and shock that I am out of the house without a carer and am in fact a strong independent woman. Just don’t plz. A lot of wheelchair users are able to leave the house without a carer, especially if it’s just for a little errand! A lot more wheelchair users would be comfortable doing this and able to if the world was accessible. But that’s a whole different story.
5. Drunk people literally falling on me. Just be aware of your surroundings, please. A lot of wheelchair users have conditions that mean they are more likely to dislocate or break bones and this could easily be harmful.
6. Stepping over me to cut through/do something faster. Again just don’t. If there’s space for me to move then ask politely. If there isn’t(like when queueing for public transport after a stadium show) just wait your turn. I am not an object to be stepped over.
7. Making a meal over moving your buggy into the BUGGY SPACE on the bus so I can use the WHEELCHAIR SPACE. Whilst I hate it if someone with a buggy can’t get on because there is already a buggy in that space if I’m getting on the bus and you are with your buggy in the wheelchair space please move into the buggy space as soon as you realise a wheelchair user needs the wheelchair space. There’s a designated buggy space and a separate designated wheelchair space for a reason.

What actions by other people have annoyed you as a wheelchair user?