#BADD2015: Don't shove me into your stereotypical box.

The other day I felt really angry, for me at least because I’m not a person who angers easily. However when I was younger, there were periods in my life when I felt really angry. My Auntie taught me that the things I was getting angry about may not be as simple as they seemed and to find out what the truth was. As I got older I questioned more and endeavoured to understand. I shied away from anger believing that it had no place in my life, that it would only bring negativity and pain. And although I still believe that anger is best kept in small quantities, anger can push us forward, it can prevent us from accepting the inequality within society and instead motivate us to fight for change.

The last five years have been especially hard on the disabled community and there have been many times when it would have been easy to be consumed by anger. Even before the last general election, the tabloids had increased the disproportionate amount of articles that falsely claimed or gave the perception that benefit fraud was sky high. And not only has this continued but it has steadily worsened.

Over the last five years society has been bombarded with an underlying ideology that disabled people that claim welfare are a problem and are not part of society.

This negative ideology is only further perpetuated by the Government. With a speech on the fairness of seeing the “closed blinds of their next door neighbour sleeping off a life on benefits” and the near constant references to those who “work hard and get on” and “hard working families” to name but a few.

But this simplistic and discriminatory view implies disabled people who are not in work are simply choosing not to do so because of the perception, that a life on benefits is an “easier” life. This shows an absolute lack of understanding about those who can’t work and of how restrictive disability can be.

But with this being portrayed as an injustice to the rest of society it is easier for politicians to form a regressive welfare policy if people believe that those in the disabled community are fraudsters. Because the perception then is of a government that is simply righting a “wrong” and not the truth, that this causes society to stagnate and discrimination towards the disabled community to worsen.

You would think with a government and the media that is so eager to criticise the disabled for not working it would be shredding away the barriers to work to enable those that could, with the right support, variety and flexibility in the work available but alas no. This Government that is so eager to criticise has not only failed to remove any barriers to work and social inclusion as a whole but it has closed or reduced existing schemes like the Independent Living Fund and Access to Work.

The prime minister only days ago stated “a life on benefits, is no life at all.”

This goes back to the same perception that a disabled person without a job, has no purpose, no life. It also implies that a disabled person’s value simply rests on their ability to work or not and belittles the huge contribution that disabled people have made in society. In the same way as the rest of society, the disabled community pursue interests and contribute to society as others do outside of their employment.

When highlighting the Government and the media’s position with the public and with people I know, it is obvious to see how much this distorted perception of the disabled community has influenced many peoples’ opinions.

In its more milder form it is not unusual to be told that the “Government are obviously not talking about you, you're obviously genuine”

I know I am but given that the vast majority of people claiming disability benefit are genuine, chances are however much this person may perceive me as genuine, another member of the public who doesn't know me may not and may discriminate against me. This feeds into the public's belief that benefit fraud is 34 times higher than reality.

For anyone that has read my blog you will know I have psoriatic arthritis and hypermobility alongside additional conditions and that I deal with pain every day. Although I walk with a stick and have had to use a wheelchair at times, I may look “normal” to an outsider that doesn't take more than a second to glance at me or get to know me.

I have had my disability questioned and have faced discrimination by passers by and those who even know me. I know that isn’t helped by the fact that stereotypically, arthritis is seen as a mild condition and one that only affects people in their old age. But the real crux of it is, that not only is the reality of my condition further from the public’s often misguided perception, I often receive discrimination and less understanding than someone who has the flu.

This is what I find truly ludicrous. I would love to say that this is uncommon but I and so many who live with invisible conditions have our validity questioned just because we don't have a snotty nose. It is even more ludicrous when you factor in that my arthritis can create a immune response that is equal to a severe bacterial infection or even burns.

Not only do disabled people have their validity questioned by society and even by people they know, they often are excluded from social gatherings and if invited the lack of an accessible venue or seating may mean they are unable to join in when they otherwise could of.

I have learned since the onset and the gradual worsening of my disability that friends that knew me well accept that my disability is just another aspect of me and that if they enjoy my friendship, they will make time for me as they did before. There are friends that care after every hospital stay and friends that will wait with me whilst I sit and rest, and there is the friend that has done all she can so I could be at her wedding.

Because of those friends and when I meet members of the public that give me their seat before I stumble, for those that don’t glare at me and instead open a heavy door, and for those that ask me questions with a thirst for understanding, you are the reason I do not submit to that anger.

The discrimination has been completely engineered to pull the public's attention away from the real causes of the inequality in other sections of society to easily blame those in the disabled community.

Society has gone backwards and peoples' perceptions have worsened. But this is not an problem created by the disabled community, it is one of a complete lack of acceptance. It is so hard for the disabled community not to be blinded by rage from the injustice experienced. The realisation that this shouldn’t be up to the disabled community to fix. There are those in society that will judge the disabled and do not want to change their ignorance and to those people I do not need to justify myself or spend time on you. To those that ask questions and want to reach out to understand, I am here.

(I know im late this year but better late than never)

Chronic illness, disability & a box that doesn’t “quite” fit

So I am referring to a blog post I have read titled “Please Stop Framing Disability as Just a Welfare Issue” & although I refer to the piece it is not an attack at the bloggers character but criticism of a piece that I felt was deeply one sided in parts.

I have linked to the blog post that I am referring to above & about half way down the post it refers to a section of the disabled community as the “Sick movement”.

I can’t see how refusing to accept a section of the disabled community as that, disabled, is suppose to support a move to have the disabled community included fully into society?

Just because someone may personally believe that these people do not “fit” into the definition they have of disability doesn't make it true.

It is also deeply disturbing & damaging to imply that if one person is perceived to have a severe disability & can do a proportion of work, that people with perceived “less severe” disabilities should have no excuses. When in reality most have additional difficulties that are not taken into account when casting judgement, which in itself can often be most damaging to the individual & will not support any idea of being confident living with their disability.

I have several overlapping medical conditions including psoriatic arthritis & hypermobility & although some conditions with the appropriate medical treatment can be well managed, medicine is still not perfect & often a person's condition is still disabling.

I have a condition which as a result causes disability & so therefore i am DISABLED. My arthritis causes me pain, fatigue which restricts my movement. I am restricted in my movement by the inflammation & pain & I can not carry anything heavy because my wrists will physically give way & this is just to start. Although I have medical treatment, I am one of those where medicine can not control the disabling aspects of my condition.

Disability by definition is a restriction & a limitation. It is not because we aren't trying hard enough, that we’re not “determined” or that we are giving in. With all the will in the world it won’t necessarily be enough if the body can’t keep up, even if the person had unlimited support & adaptations & this is not a failing on the person’s part.

It is bad enough that the government & the media consistently bash the disabled community on its legitimacy (which creates a more ablest environment) without members of the disabled community excluding people, often newly disabled, because they don’t believe that these people belong in their definition of disability.

However much the blogger in question may not like welfare being part of the immediate debate it is because if people are left without money & security when you are disabled (especially newly so) it will worry the life out of you, as it would for others disabled or not.

At the point when the brown envelope hits the mat the last thing a disabled person is thinking about is how to change disability policy for the better but instead are hoping that they will have a roof over their head, food & heat. The blogger makes it come across as if the first thing that enters a newly disabled person’s mind are pound signs but instead it is worry.

The work capability assessments work on the basis of the person is "guilty" or has something to hide & it grades on how “damaged” a person is. I would argue that the work capability assessments are the immediate basic problem for many. They are disabling in the way they are carried out & inspire no level of confidence from the individual that they will receive the support they need.

From what I have taken, from what the blogger has written, I agree that society is disabling but even if we had some beautiful utopia (oh how I wish) people will still be disabled especially those with chronic illnesses until medicine advances further. The WCA is broken & campaigners are drawing attention to the failings of the assessment to try & improve the situation. If the WCA was altered or removed this wouldn’t be the end to campaigning, it is only the start.

It is not seen as a "black or white" issue or that simply welfare is the only issue affecting disability. I find it incredibly patronising that people who campaign for improvement in the WCA apparently want the "protective feeling of a hospital environment".

The campaigners that campaign against the WCA want greater support given to disabled people so that they can realise their full potential. However many of the policies that were moving towards this have been cut, altered or greatly reduced including the ILF, PIP & access to work. Although imperfect, these were steps towards giving greater support to disabled people to realise their full potential & to be independent but due to the cuts the progress that has been made is largely being undone.

Disease does disable people & so does society. I would love society to lift the barriers around access to transport & buildings, for flexible working, job sharing or variable hours. But also for society to see that some people can't do paid work but could volunteer & that some can’t work but still have valuable contributions to make in other ways & to appreciate the value in it.

But this takes time & for society to care, which seems to be happening less & less with the increasing scrounger rhetoric portrayed by the media. Disability doesn’t fit into a tidy box or category it is as unique as the individual affected. The blogger only sees the final goal, not appreciating that we can not ignore the issues of the WCA if we want fair treatment for disabled people.

The process takes time.

Disability - Thinking for two more seconds

Growing up I felt very proud of my country, a country that after the war, after going through so much, created the NHS & the welfare system because it was needed & the right thing to do.

Aneurin Bevan said on the formation the NHS that “despite our financial and economic anxieties, we are still able to do the most civilised thing in the world: put the welfare of the sick in front of every other consideration.”

And growing up this is how I felt my country was, that on the whole we would always try to do the right thing, the moral thing. Later, naturally I lost my child-like naivety, I know as a country we have got it wrong but somewhere down the line the truth has been twisted, moulded into something that is not.

Certain sections of the media have perpetuated stories unrepresentative of the majority, twisting stories to create sensationalised headlines, backed up with manipulated statistics.

Stories on “welfare reform”, benefit claimants with 60in TVs, of disabled claimants that dare to step out of the house, even implying welfare is somehow responsible for murder.

And if history has shown us anything, if something is repeated often enough, regardless of validity, people will start to believe it.

As a result, media & public opinion have become so hostile in parts that many disabled people feel guilty or feel that society expects them to feel guilty, like they have done something wrong, whereas in reality they have done nothing of the sort.

And the thing is, why should any disabled person feel guilty?

I have multiple conditions, none of them were my fault, it is rarely anyone’s fault that they become disabled & it can happen to anyone.

When using public transport, I’ve been glared at, muttered about & verbally attacked because I’m a young girl sitting in the priority seat with my walking stick in hand even though I’m more than entitled to be there, just as any disabled person is.

When I have gotten on & there are no seats, people will automatically move for an elderly person that gets on. I have no problem with that. When I was younger & able, I was brought up to offer your seat to an elderly person if they got on & there are none available as a matter of respect. My point is many a time an elderly person has gotten on with better mobility than my own & they are offered a seat automatically, but for me people will wait & stare, the cogs in their head trying to work out, why does a young girl need a stick, inevitably as I start to stumble someone else moves & offers me their seat.

My point is that some people believe that, of course an elderly person will have mobility problems but a young person surely wouldn’t. They either don’t fully understand how & to what extent young people can be disabled, or believe what has been said in the media, that benefit fraud is high.
It has got to the ridiculous stage that people have even been berated in the media for having “nice things.”

The amount of times I have heard people say “Well I can’t afford an iPhone so why should they be able to get one,” is enough to drive anyone insane.

But people don’t take the time to think for longer than a second that it may have been a gift, that it may have been bought before they got sick, that they took out a loan for it or got it on the never, never. Also often people don’t realise that many disabled people do work.

They don’t think for a second that we all have different priorities, you may go out 3 nights a week at £50 a go, whereas the disabled person may not go out at all or very rarely & instead saves their money for their contract phone of £40 which in comparison means they are spending considerably less.

People don’t think for a second that its their lifeline, their contact with the hospital or GP, to friends or family, their ability to socialise & keep up to date with the outside world which is especially vital when enduring stints in hospital.

People don’t think for a second how much technology is an aid for people with disabilities & that this is only going to get bigger.

An iPad or tablet for example is great for people that can’t lift up a conventional laptop & need to move position & location during the day. Voice dictation & predictive text software is improving with every new update, helping people with dexterity issues such as arthritis & hypermobility. Disabled people do so much with technology, often using technology to complete tasks they can’t physically do in real life.

Another topic I have found people to obsess on is that people should be given food stamps or their benefits on a government card that excludes items such as alcohol & cigarettes.

Firstly I will never understand how someone can become so obsessed with making sure that people don’t have certain things & how they find the energy to, but in countries that have adopted these systems, they are always more costly to implement & a black market always forms along side it.

You also would be creating a level of stigma, a way to recognise those who are receiving support & I often wonder if people want that to make themselves feel better about their own lives.

I have also heard people state that “unless you have paid something into the system, you shouldn’t get anything out.”

So what about children born with severe learning disabilities & disabilities? Or teenagers who are diagnosed with a disability? Tough luck?

Yes, some disabled people are able to work but others can’t, with better systems in place & real support, it may be possible to help more people in the future but I don’t think anyone should be penalised because they were born disabled or developed a disability when they were young before they had a chance to pay in. Disabled peoples’ contributions to society are too often dismissed if it isn’t through paid work.

People complain about what their taxes are spent on, I don’t think that will ever change but in comparison to countries with mostly private services, it is so much more expensive added together. Due to the type of system we have, there is no profit made & as many pay in, it acts like a group discount meaning that it is cheaper for all.

People seemed to understand that although you may not receive anything at the time, that it was there for if you were ever unfortunate enough to need it or for any of your family or friends. I didn’t have my disability or illnesses from birth, like most they came later in life & it can happen to any of us.

I think we are too quick to pass judgement, possibly more now through the advent of social media.We used to think deeper about what we were going to say, not to edit ourselves but to form a balanced opinion. However I feel that when we don’t take more than a second to look deeper, like with the media, inaccuracies & prejudices unrepresentative of the majority will continue to be passed off as the majority, This is only going to increase the toxic nature & hostility towards people that require assistance & we should hold on to some of our child-like instincts & embrace a balanced, factual judgement.

I can’t understand how people are attacking the most vulnerable in this country, on a misguided belief that what a minority of the group do, is some how representative of the majority but ultimately disabled people in this country didn’t get us into this mess in the first place & deserve support. It is also not that benefits are too high but that people have different priorities & for some, wages are too low in relation to living costs.

And to the disabled people in this country, you shouldn’t feel guilty as long as you have the conviction in your mind & in your heart that you are doing all you can, you can’t ask for more. Disabled people should no longer feel guilty for peoples’ inaccurate beliefs & should no longer feel guilty because people aren’t thinking for longer than two seconds.

Who cares about carers?

I have heard many a time on forums & such people stating, why should we pay a benefit to people for caring when surely if they care & love the person in question that requires the care, they would do it anyway?

The thing is, yes they all would.

Caring includes everything from round the clock nursing, to completing some tasks & aiding the disabled person to do the rest themselves, to being more of a personal assistant.

It’s not about the grand sum of £59.75, if the short change that the government pays to carers was paid to a care provider to instead provide the ‘care’ it would equate to £1.70 an hour & I can’t see any outside care company providing anything for that, no where near close to the minimum wage.

This you are only entitled to if you provide 35hrs of care, of which there are many carers that provide way over this many providing 24hr care, always on call with very little respite & others that provide less & don’t get the “marvellous” sum of £59.75 but still care & aren’t any less valuable

Carers & the disabled people they care for don’t want pity mind you. Although disabled people have some limitations due to their disability, it doesn’t mean that they don’t have aspirations. By completing the tasks that the disabled person can’t do or the tasks that would take so much out of them, can mean the difference between the disabled person just ‘existing’ & the disabled person being able to concentrate on some of their own life choices whether this be working, studying, arts & crafts etc. Disabled people in this country have valuable contributions to make to society & their carers are vital in enabling disabled people to fulfil their life choices.

Carers also look after friends or relatives that are living with some of the most challenging or terminal of conditions. For a carer to slowly see their loved one taken by dementia for example must be heartbreaking, to slowly lose someone you care about over time.

People also don’t realise how heartbreaking it can be to watch someone you care about so deeply go through pain & illness. I myself always deal with a level of pain all the time, people often think how the disabled person is dealing with their condition but often the distress that the carer feels is often overlooked.

Carers often see & face the hostility that disabled people have to contend with from certain sections of society.

Carers are often the people that fight your corner for what you need, often it can be when rushed to hospital & as you are too ill, you no longer have the strength to argue yourself to remain in the hospital for treatment (you would rather be in your own bed) as the Junior Doctor fails to fully understand your condition & the gravity of the situation & wants to send you home. Your carer fights your corner, makes a “fuss”, insists on being seen by the registrar which when you do, they apologise as the information you had given the Junior had not been shared & now the registrar understands the gravity of the situation & how serious it could have been. The carer had seen it all along, this isn’t unusual.

I always wonder were carers fit into the Conservative’s “Hardworking Britain ?”

I detest this statement, what is your definition of hardworking? Would a person that owns a multi billion dollar company be your idea of hardworking because they make so much money? Would they still be the ideal hardworking person if their company dumped chemical waste & exploited their workers? Would they still be the ideal person if they never saw their family?

Just because a person may not make millions, does it mean that their contribution is any less?

Hardworking has nothing to do with the amount in which you are paid, some of the most important things that keep our society together are done by people that get no or little financial reward. We must focus on making a conscientious society & as well as a strong economy but not one where the focus is on obtaining the biggest financial reward at any cost to society.

Carers are deeply under valued & unappreciated by the state but they don’t care for people because the state tells them to, they see they are needed & are valued enormously by the people they care for. Our ability to care is one of the best aspects of humanity & if carers stopped caring the cost to the state would be enormous. The fact is that even with giving this small amount of £59.75 (too low in my opinion) to the carers in this country, it is much more “cost effective” than if the country had to employ an army of carers. It also means that even a small amount can allow the carer a break & allow them to do something they enjoy. Caring isn’t the same as looking after a loved one that has the flu. Many people often don’t understand the effort that people put into caring often the putting the person they are caring for before themselves & often can’t have a ‘day off’.

The thing is you can’t put a price on the care & support that the carers of this country provide

Carers enable, carers are anyone. They are wives, husbands, sisters, brothers, mothers, fathers & friends & regardless they will always keep on caring.

Carer’s UK

Its all about perspective.

(Here is a picture of my beautiful long furred baby Syrian tucking into some cucumber to cool down)

It has been hot this week & today is no exception & it is indicative of us brits to whine when its hot & to whine when its cold.

But lets take some perspective here, I’m really hot & I could wine but it wont make me any cooler & I have two beautiful long furred Syrians & the baby of the two’s fur is like silk & wool. Now we have been keeping them both cool but especially today the baby has had his moments when I’ve found him either lying ‘splat’ on his front or on his back with all his feet in the air. I would be lying if i said he hasn’t whined (he really can for a hamster) but I cool him down again & he gets on with it & snuggles down to fall asleep.

Now the difference is I could think of only of me & whine about how hot it is but I have the ability to strip off to my birthday suit if I so wished (with the blinds down not to scare the neighbours of course lol) whereas my beautiful little hamster doesn’t have such an option.

This is my point. Its ok to whine as long as afterwards we put it into perspective & carry on with what we are dealt because any whining is only going to increase our own suffering. I understand that this is not always possible & especially for people with disabilities because the light at the end of the tunnel may seem so dim & we all have times like this. But for all the benefit bashers out there I can not understand for one minute why you can not be grateful for your lot? why people make stupid suggestions like people should only have food stamps & such? Why can’t you be grateful for your health & what ever you do have because putting other people down wont make you a ‘cooler hamster’

And

To you all " Just keep swimming"

I dedicate this post to a beautiful soul who after battling with cancer earned her wings, Talia Castellano.

"So whats a cumulative impact assessment"

So today has been one of those interesting days & I wasn’t going to do another post but found myself compelled to.

So i’m doing this post at the moment with two of my fingers strapped up because my hand decided it reaaaallllyyy wanted to know what a dislocated finger felt like so my finger happily obliged >.<

Ah hypermobility!

But the thing is I can only do the things I do because of a lot of physical help, adaptions & aids etc & there is always a physical “price" for everything I do. Disability is a major barrier.

The government have pushed through a vast array of cuts in the light of austerity but to begin with they insisted that the most vulnerable would be protected.

If we fast forward to today there are no promises of protection because they know that it is not being given & with each cut it slices into the safety net making the holes bigger, meaning more & more of the most vulnerable falling through the net. You only need look at the news, to see countless examples of people that were let down & for every one story covered there are many more in the wings.

So tomorrow there is a debate in the house of commons calling for a ‘cumulative impact assessment’ with the aim to try and assess the overall impact of the cuts. Because many people are experiencing several cuts to services all at once instead of just one or two which people could try & adapt to & this is leading people into significant difficulty & hardship.

Many people, news outlets & charities are now seeing the scope of these cuts & how multiple cuts are causing significant problems to vulnerable people & now they want to get the government to see the reality.

Below is a link to a awesome blog that goes into much more detail than I can atm with my wonky finger

Diary of a Benefit Scrounger

It's near Monday, Gwah!

I’m so mean reminding you but you know it is the enviable >.<

So the weather has been quiet hot here this weekend & among other things I have been trying to keep our two cute fluffy syrians as cool as possible, bless them.

This week, one of the hospital appointments I had was to see my physio who is super lovely but I think is really confused about what to do with me as I have random joint swelling that doesn’t seem to conform to any patten & the swelling usually gets exacerbated by normal physio ‘things’. I’m currently waiting for some final tests that may explain why this swelling seems to be random but for now she really seems to not know what to do with me.

I get the feeling that she really doesn’t think there is anything further she could do to help without aggravating things which almost always seems to happen when I try any physio related stuff but she seemed determined to try & seems like she doesn’t want to let me down which I appreciate.
So I’m going to be trying acupuncture again & I may be seeing a podiatrist to possibly get some insoles.

Also as people may know I started Questran for my Bile reflux & I hate it, it’s just been awful.
Ok yes the suspension is nasty to take but its not the worst but the thing that’s been quiet bad is that it has increased my nausea & the amount of bile coming up. But the worst thing is the bloating, OMG! I swear I feel like I have a beer belly & to be honest this is the one that is driving me crazy. The doctor wants me to ideally take four doses but i’m only managing two at best because of the bloating & such. I think this week i’m going to have to go back to the doctor to see what can be done.

In other news I had my benefit reviewed & it was renewed so there’s one less worry there.

And really that’s it for now, I would love to write more but writing as much as I did & re reading through it just showed the amount of Bol**cks I was writing due to the pain & how i’m feeling atm & no its not because IM CRAZY! >.< Ha Ha

Anyway new posts coming soon so stay tuned!