Blog Against Disableism Day – 2014

Friday 2 May, 2014

Yesterday was Blog Against Disableism Day.

I would have liked to have blogged for it, but unfortunately the days before were busy ones and I’d overdone it, so I spent most of yesterday in bed suffering the after affects. Gone are the days were I can blog, lying back in bed with my laptop on top of me, crushing into my ribs.

Shame really, I wrote some of my favourite blog entries with my laptop crushing into my ribs. (But remember, correlation is not causation!)

Anyway, so that’s why I didn’t blog yesterday, on the day, despite it being a topic I’m very passionate about. This topic is, as they say, very much up my street (dropped kerbs implied). So I’m blogging now. I feel like nothing shows how life in itself is disableist than missing disabled-related events because of a disabled-related problem.

And that’s largely the way disableism is for me, and for a lot of people no doubt. Disableism isn’t just about offensive opinions and words, insults that can ruin your day or discriminatory actions, it’s also passive attitudes and unchallenged perceptions.

I’ll give you an idea of how living with a complex, fluctuating disability is quite swings and roundabouts, in regards to disableism, from my own experience.

When I could walk, before the crutches became permanent accessories for my arms, I stood hunched over, on the worse days I walked oddly, I was the height of a ten year old, and quite frankly, my conversation skills didn’t really match my appearance, and thanks to many flus, acid reflux and a post-nasal drip, I also have a voice deeper than what I should have. I got stared at, a lot. I mean, a lot. I’m not being paranoid, even friends commented on it. Children would just stand and stare at me, some people would be taken aback when I interacted with them, and just in general, I could tell people didn’t know what to make of me. I assume, to them, I was just all around odd.

And then I was permanently on crutches, and I found that whilst adults took to me better, I assume down to them being able to categorise me better, children’s staring increased. Again, that’s not me being paranoid, this was also something a friend at the time noticed and commented on. I didn’t shave my head or get my nose pierced for this reason, but at least when I did do those things, it gave them something a bit more interesting to stare at whilst they were staring.

I remember on one memorable day, I got ID’d because I didn’t passt for eighteen, my disability was questioned, because I was only on crutchers, and then got referred to as a lady. Not even young lady, a child called me a lady.

I just never knew, during that time of my life, what attitude I’d be faced with next.

And then i was in my wheelchair more, walking less and less. It was the strangest thing, even with my shaved hair, in my purple wheelchair, always by myself, always seemingly a bit out of place, I got stared at a lot less. Again, something that friends noticed on my behalf.

The downfall?

Pretty much everything else. Everyone around me just didn’t expect me, now wheelchair bound, to want to carry on as normal, seemed to think I was expecting too much when I expected to be able to carry on as normal. I still took the bus, but god forbid I ask the driver to put the ramp down, god forbid I even expect a ramp in the first place! I tried to shop, and in some ways it was suddenly easier in a wheelchair, but it was also more difficult. I realised I could carry things on my lap, whereas using crutches meant I never had a free hand to carry things with, and I was always too frightened of being mistaken for a shoplifter to put things in my pocket until I got to the til. The one time I asked for assistance, I practically overcame crippling social anxiety to do so, it was for one thing, he picked it up and carried it all the way to the fil for me. It was a beautiful moment.

I did not have the same experience when in my wheelchair. I won’t name the shop, but I went in for a jar of dip. It was on the shelf that was just above my reaching height, and I flagged down a middle-aged man, who did actually work there not just a random stranger, and asked him if he could pass me the jar down. He did so after a sigh, and pointed out, ever so helpfully, that if I need help, I should get a carer.

And that’s the crux of my experiences with disableism. People in general do not understand complex, fluctuating disabilities, or that disability is a spectrum.

At that point in my life, I did not need a carer. I needed people to do their jobs and a jar of dolmio salsa dip. Disabled people are only seen as a burden, people you’re made to go out of your way for, because we’ve not been given the opportunity to be independent.

Now I do need more help, and I have a support worker. My condition is worse, and sadly I find people’s attitudes towards disabled people worse. If I could go back to the days were being stared at were my most upsetting experiences, I would in a second.

But that’s not reality, and reality is getting worse. The disabled are fighting a war we’ve been set up to lose. We’re meant to have jobs, but we’re not expected to want to use public transport to get to them. DLA is switching to PIP, a lesser benefit that is insufficient and it’s taking motability down with it, and Access to Work has been cut. Lately I’ve been in arguments that have started because an able-bodied person has refused to give me access to the wheelchair accessible facilities I require, because it puts them out, my well-being be damned. They wouldn’t even have such facilities to appropriate if it wasn’t for disabled people demanding equality.

DSA is changing, at risk of going completely. So disabled people are meant to have jobs to pay their way, but without the education and qualifications to qualify for them? There’s the attitude with ablebodied people that if they don’t go to university, at least they can try for manual labour type work or retail. The chances of a severely disabled person being able to for that type of job are low, and if they could, the chances that they’d be hired are also low.

Negative comments, insults, threatening behaviour, ignorance, refusal to act in a helpful manner, online harassment, I’ve experienced them all. But there’s something deeper and darker at work. If you’re well enough to play along with the system like I once was, you feel like you’re fine, that it’s not that bad for you, but it is. Because you have to play along with the system. When you stop being able to, you realise how broken our society really is. And the foundations are in the disableist attitudes.

We can’t correct people’s derogatory comments until we have the support and understanding from the government to flourish. The systematic break down of a disabled person’s life needs to end, not the disabled person’s life.

And one more thing, can we knock the term “differently abled” on it’s head, please? I can’t think of a more patronising term for disabled that makes me queasy, and I’ve heard a few! It completely erases the existence of disability, and it’s as harmful as the phrase “the only disability is a bad attitude.” No, disability is disability, bad attitude or not.

I’ve learnt to adapt because I’ve needed to, and it wasn’t easy. I life my life very differently to what I used to, and it’s not easy. I can no longer go for long walks, it hasn’t given me the ability to fly, blow up things, or see ghosts. I’m not a member of the X-Men, i’m disabled.

All the term “Differently Abled” says to me is that it’s more important to put a positive spin on disability than it is to understand the complexities of disability.

I am disabled, and I’m proud at working around my obstacles, but if i do things differently, it’s because I’m just that good adapting. But I, and many other disabled people, adapt out of necessity because the greater society fails to adapt to us. Most buildings are still built with stairs, lifts are still mostly an afterthought.

Calling disabled people Differently Abled isn’t just insulting to many disabled people, it’s also insulting to able bodied people.

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The Benefit Changes of 1837 (AKA 2013)

Sunday 31 March, 2013

Before I get into this entry, I’d just like to apologise for how ineloquent this entry might be. It has taken me over a week to write, I’ve been tired due to a number of reasons and, well, ranting on and on about something doesn’t produce the most eloquent of entries anyway, does it?

So, yeah, if this entry is hard to follow, I apologise. But do try to stick with it, because it’s sort of important. And even if it isn’t important to you, it’s relevant to the right here and now of Britain, 2013.

So without further ado…

Tomorrow, Monday, The First of April, those of us on benefits will be become victims of the welfare reform implemented by the government and their minions. Well, they diplomatically call it a reform, I call it a cruel overhaul.

I know the government is short of money, and yes, there are people who are on benefits when they shouldn’t be and yes, the Government do need to do something about it.

But this overhaul is not the way to go.

The housing benefit and the bedroom tax, for example? Excuse me whilst I rant a second.

I know this doesn’t just affect disabled people, and I know that not all disabled people are affected but at least 60% of people affected by the bedroom tax are disabled. The government want disabled people (or families of disabled children) to either pay for a so called extra bedroom or move into smaller places. These are people in so called social accommodation. I personally believe in calling a spade a space, and you can call me old fashioned if you wish, but social accommodation to me is nothing more than a new term for council housing.

But there’s no councils involved directly any more, so it’s social accommodation to reflect how the houses are funded. But don’t let the fancy new term kid you. Houses built under the name of social accommodation are the same size as council houses, they’re as thoughtlessly laid out as council houses and the garden space is just as worryingly small as council houses. In fact, if I were to be completely honest with you, I’d say the houses built under the term of social accommodation are worse!

The new houses are made of this thin plaster board, so thin that there has to be wooden planks on the wall for people to put up curtain rails. There’s no place to hang photos, no wall mirrors, no clocks. Putting one directly into the plaster board could lead to a crumbling wall, especially during what they call the “resting period” after a new house has been built. For the record, the resting period of those houses was ten years.

The house I lived in wasn’t treated for damp, none of the new housing estates under this housing association was, which is essential with these new building materials, so we ended up with walls exposed to the elements and infested with damp the second year of living there. And just like the old council houses, the doors hardly fitted into the doorway frame, the bathrooms were badly designed and the kitchen was as small as possible. No storage space to boot, but no way to put up shelves either.

These are not houses you can turn into a loving home. And I’ve veered off the point.

My point was, these aren’t the highest standard of buildings and they seem to be getting worse. I was in desperate need of an accessible place to live, and this was the best they could provide. I don’t know what people think social accommodation housing is like these days, but I can tell them what it’s not, and it’s not a big mansion with a swimming room, sauna and room for a pony.

The tax payer is not paying for people to live in luxury, and just because someone is in receipt of benefits, it doesn’t mean they don’t also pay some form of taxes or that they’ve never paid taxes in their life.

And back to the bedroom tax!

The government want people even worse off than myself to move into smaller places. Where do the government think all these smaller accessible, affordable places are? And what they class as essential don’t seem to match up to what a disabled person might reasonably need. And that doesn’t even touch upon the point made many times on the news: A disabled person could probably need their own room.

Once again, it’s as if the attitude U-turn on disabled people has been used to justify heartless ignorance. After many years of arguing for our rights to be seen as worthy to be in relationships, our right to still be treated like humans if someone becomes disabled later on in life, we are suddenly having it thrown back in our face.

Just because disabled people are in relationships with all the trimmings found in a relationship, doesn’t mean that we automatically share bedrooms with those we are in relationships with. Yes, even married people.

Do you know how much room a hospital bed can take up? And yet the mattress are usually smaller than the normal single size. It’d be a tight squeeze for even the most cuddliest of couples.

And that’s if the disabled person doesn’t have to be hooked up to a bunch of machinery over night to keep them alive and well. Have you ever tried to share a bed with someone who might hurt you in the middle of the night due to spasms? Have you ever tried to share a bed with someone you might badly hurt just by accidentally knocking them in your sleep?

Do you know how noisy some of that machinery is? Do you know how important sleep is to a disabled or chronically ill person is? Sharing a bed with someone who tosses and turns at night wouldn’t just be annoyance it is for the majority of people, it could be life threatening!

And do you know how uncomfortable it is to sleep with your neck and shoulder at a strange angle to the rest of your body, just because the person your sharing a bed with has the head part of the hospital bed raised up so that their neck and head is supported in the only way it can comfortably be to them? Or with the knee break up, or on a full or half tilt to ensure blood pressure stays even? I don’t actually, because I am that person with their hospital bed head part up at an awkward angle for everyone else.

And then there’s just the fact that some partners can’t share a sleeping space because they need their own space to rest properly, and a restless partner, disabled or not, affects that.

I know it’s a trope on hospital dramas and in fictional romance stories, but honestly! There’s no room for an extra pillow, and if you can’t get that close and comfortable in a hospital bed to share one, you’re out of luck.

Hospital beds and hospital equipment take up too much space for two beds in the conservative measurements the housing associations class as bedrooms. If these couples, married or not, can’t share a bed, they need enough room for two beds in one room or a bedroom each. They can’t move into smaller property, that defeats the purpose of having enough space for a disabled person to live comfortably (and that’s comfortably, not luxuriously!) and bigger bedrooms mean less storage space. I know this because I’ve lived it and seen it!
And then there are the children! Not only are the government making children share despite a difference of gender up to the age of ten now, but they have no compassion for the disabled children who might need more space due to a disability, or other children who’s sleep might be affected by the demands of their sibling’s disability.

Do I need to go through all of what I’ve said above and apply it to children?

And children are children. At least by adults we should have grown out of tired-related tantrums. Tired children kept up all night by their siblings heart monitor won’t have yet have grown out of tired-related tantrums, and they will let everyone know it. Loudly. Probably keeping their sibling awake too.

But it’s the same in both situations. There are no exemptions, and so they are classed as being able to share, thus having extra bedrooms and being under occupancy.

The government seem to be forgetting that this is ultimately a change to deal with the issue of over-crowding. If two bedrooms are being used, they are not under-occupancy. And I’m sorry, but if they want to talk to someone about being under occupancy, they should look around the house of parliament and ask who has a second home! Never mind picking on the people who use a second bedroom, take those second homes and turn them into flats or something! Accessible flats, at that. Get those poor people who have had to turn their living room into their bedroom and bathroom because they’re no longer fit enough to use the whole house, and get them into an actual suitable property. That frees up a home.

And remind me to rant more about accessible flats in the future, because just saying “accessible flat” isn’t enough.

Most importantly, what I can’t get to make sense in my mind, is the fact that councils report there is an over-crowding problem and a lack of houses on the list. So why are they forcing people out of their homes if there’s no homes to move into? Or why don’t they search out the most over-crowded house holds and the most under-occupied house-holds and see about swapping them around?

Why are the poorest being kicked further when they’re already down?

Which brings me smoothly on the sister issue of the benefit caps.

The Government are reporting that there’s been an increase over the last ten years of people claiming disability benefits, and more people than ever before going straight onto benefits who’ve never worked. They can’t sustain at the rate they’re going, so things have to change.

Now, what they’re trying to imply is that, basically, we’re all scroungers. We’ve all heard that word before. Anyone who lives off benefits who could possibly work are scroungers and this generation is lazier than the last generation, and young disabled people are getting easily discouraged by the poor economy so they don’t try either.

Well… I don’t accept that. Call me naïve, but I think more people are claiming disability living allowance and employment and support allowance is because we have more disabled people.

It really is as simple as that.

The DWP maintain that the number of those found wrongfully claiming benefits stays under 3% of all claimers. So it’s not the scrounging society Cameron will have you believe.

More children are surviving birth defects, and they grow up to be disabled adults.

More children survive horrific accidents, and they grow up to be disabled adults.

More children are surviving illnesses and diseases which might leave them physically or mentally disabled, like meningitis for example, and they grow up to be disabled adults.

More babies who were born prematurely are surviving the critical hours in NICU, but not all of them come out from there with perfect health. Those babies who don’t grow to be sickly children, and if it’s something that doesn’t get better in childhood, then they become disabled adults.

Better medication and long-term treatment guarantees a longer life for those who would have otherwise died in childhood, like those suffering from Duchenne Muscular Dystrophy or Cystic Fibrosis. For the time they manage to survive, some of it will be as adults. Disabled adults.

There’s those people with severe forms of epilepsy, diabetes, asthma. Every day they survive on a gruelling regime of medications and assistance. It gets them to adulthood, it keeps them alive, but employment could be difficult.

And then there’s people who weren’t born disabled, but became disabled during childhood or adulthood. A serious illness, a tragic accident, or just a horrible twist of fate. I know the NHS is not the best, and it’s getting a hard time right now with everything in the news, but more people are surviving accidents, serious incidents, sudden illnesses, strokes, heart attacks, and things like that, due to medical intervention of the NHS. Some might come away from some of those things just as well as before, loads others don’t, and if they survive, they carry on their lives as disabled people.

Our population has grown, the ratio of disabled people to your average person has increased, therefore the amount of people on benefits have increased! It’s simple maths, and I say that as a dyscalculic!

Does David Cameron want us to go back to when people died of things we could otherwise save them from? Because that would sort his problem out. Depriving people of benefits they need to survive is just the heartless, long way around.

And all of this discussion about whether people should be awarded long-term benefits is ridiculous. Most disabilities are for life. You might outgrow an illness, you might outgrow a deficiency, but you hardly ever outgrow a disability, especially not without a lot of help at some time in your life and an ever present reminder for the rest of it; Some disabilities are temporary, someone might be temporarily blind, some people might be temporarily paralysed, but even then, they have to live their life as best as they can with that disability for as long as it affects them, and with those things, you can never tell.

Changing the system so everyone has to be re-assessed every year for their benefits just because a few slip through the system is unfair. And every single change to the assessment system makes it harder for genuine people who desperately need the benefits to get them, all the while the fraud percentage stays the same. Which is not, as the media and government will have you believe, over 10% of claims. It is less than 1%.

And that brings me smoothly on to the next change.

Now this one I’m not sure of the ins and outs of, so I’m keeping it vague. Free legal aid provided by the government to help with the appeals process is either being eradicated completely or substantially cut back. Do you know what that means? It means a lot of people, if not all, who get wrongly fined, sanctioned or kicked completely off their benefits and left to suffer in poverty, will not be able to fight the decision unless they can provide the funding to do so themselves.

I am very much happy to be corrected if I’m wrong on that one, but that’s what I can work out.

Other changes will see the CAB’s funding to help people with financial and legal problems lowered, also time and days to get access to the advice, and most centres turning into glorified call centres, with advice given solely over the phone. Hardship grants and loans will be next to impossible to apply for, so if anyone loses their job because they are no longer able to do it satisfactorily enough, and is left paying the bedroom tax because they either need that extra room for equipment, a separate sleeping space or just can’t move quick enough into a smaller property, they’ll be left to live off oxygen and whatever no frills food they can get off a food bank.

Then there’s Personal Independent Payment, which will replace DLA (not employment based, contrary to what the media will report). The new categories for PIP don’t reflect the true nature of a disability, and it makes it even harder for someone with a fluctuating condition or disability to fill in. They’re harder to answer and the point system is tougher, which might seem a good idea if you’re trying to get rid of those tricksy fraudsters leeching off the economy, but awful if you actually want disabled people to have access to society.

It’s like with every other form, but multiplied. Fill it in about a bad day and risk being accused of lying to get more money on a good day. Fill it in about about a good day and risk losing access to all elements of the fund, and for those on motability, that could mean losing their car, which might get them to work, to hospital appointments or to socialise, which if you’re unwell 99.9% of the time, is the one day you basically live for.

Take that away, and you will literally have a bunch of disabled people stuck at home, staring at the walls. You know, the very thing most people accuse disabled people of doing all the time anyway.

OH the irony!

And now they’re going to be joined with fully able-bodied people who have struggled to get jobs in this economy, because there’s not enough jobs in commutable areas. It was already difficult to get a job if you were over-qualified, and now we have a bunch of over-qualified people going for jobs irrelevant to the courses they went to university to get into. They’ll be joined by nurses who have been cut by the NHS, who funnily enough, could probably help a few of those disabled people get into work quicker if only there was enough staff care to go around on wards following patient recovery.

And they’ll all be joined by many, many other people who, by no fault of their own, have ended up on benefits. And the longer you’re out of work, the more difficult it is getting back into work, because industries frown on long stretches of unaccounted for time on your CV.

This is just a slippery slope where the poor are being hit again, and again, and again. And if you think that doesn’t take affect on people, think again. The worse a financial situation gets, the more likely it is that people fall victim to depression, and that not only puts more strain on the NHS, to treat the depression, it also will cause more delays in a person getting back into work. And the cycle will start all over again.

So thank you, David Cameron and his band of merry men for kicking the poor and disabled when they’re already down, stealing from them when they’re out, and feeding it to the rich once again when they have no hope of ever getting back up.

Ebineezer Scrooge called, he said you’ve gone too far.

This was a rant brought to you by me, A Failed Journalist. I can only apologise if it didn’t make much sense.