Showing posts with label IndependantLivingFund. Show all posts
Showing posts with label IndependantLivingFund. Show all posts

Tuesday, 18 November 2014

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.

Wednesday, 11 December 2013

A Spoonie body, politics & a cute fluffy bunny.

So I haven’t been able to do much that I’ve wanted to do recently as my body has been taking its sweet time to decide whether or not to heal after my surgery & because I have been off my arthritis medication for so long my body is taking a real battering with a lot of inflammation in addition to what I normally have. Also with my arthritis flaring up the fatigue has been worse with it. Fatigue as always is so fricking inconvenient, with you not being asleep nor awake, losing hours at a time.

It’s not been made easier when I have had to go out, mostly to hospital appointments & such. It’s not like its a new thing, ever since just before the last general election this kind of occurrence happens quite often whilst we’re out. When I get on the bus people look at me & see a girl with a stick & more often than not will take more time to judge the legitimacy of my condition than see that I’m about to topple over because the driver hasn’t waited until I have found a seat & I’m struggling to find a seat, as someone is lounging across the disabled seat or the “i’d like a bit more legroom seat”

So often I see these judgmental faces of people that don’t know me. It is often that people won’t offer you a seat until they have seen you nearly topple over because the bus driver doesn’t see you or is impatient and even then it is often begrudgingly.

Often me & Mr TechieCarer will be sitting on one of the disabled seats just waiting for the glares, the comments & even altercations to occur. The glares always happen even though my stick is clearly visible. We have started to talk to loudly about my condition to each other which usually suffices to quiet them down & realise that their judgement is incorrect. We have now come to the point that we will stick up for ourselves, even though we shouldn’t have to because arthritis & all the other conditions I have are not my fault & I have nothing to be sorry about.

I know this isn’t just me & although I have had people be verbally abusive, apart from one guy threatening to sit on me, thankfully nothing physical has happened. I also am grateful that there are people that are kind & thoughtful & they restore my glimmer of faith in humanity every time. I know that other disabled people have delt with much worse, thankfully my local bus company have started a zero tolerance policy towards disability hate crime which is greatly needed to show that this isn’t tolerated.

Another topic I have seen people have a problem with is people on benefits that have a mobile phone &/or animals. I might go into more detail about this at a later time but some people are more obsessed about other people having mobile phones or pets than being happy in their own life.

They don’t understand that mobile phones keep disabled people in contact with the hospital, Doctors & Carers & let them stay in contact with the outside world when their condition doesn’t allow them to go outside. Similarly pets give people confidence, comfort & companionship. They can also greatly help a disabled person reduce their awareness of their pain, even if only for a brief moment.

http://diaryofabenefitscrounger.blogspot.co.uk/2013/12/just-watch-this-please.html

This links in with an article where Sue Marsh highlights a film which shows how vital the Independent Living Fund is for people to provide basic things that able bodied people take for granted. It is also shown very clearly how much pets mean to disabled people & that no one should be this frightened of losing support.

I can also say after we sadly lost our bunny at such a young age, we did get another. Hes now about 7 months old & is doing really well apart from a very lucky scrape around a week ago.

We noticed his head was tilting to the side & one eye was rolling to the back of his head. I knew this wasn’t a good sign (head tilt) so we rushed him to the vet & the vet said it was either concision or Encephalitis (inflammation) caused by the parasite e.Cuniculi. They believe that over half of rabbits carry the parasite & are asymptomatic all their lives, with about 6% where the parasite becomes a problem causing inflammation. They think that its more likely to be e.Cuniculi because even if you held his head his eye still continued to move. He was given an anti infllammatory injection & panacur to control the e.Cuniculi.

Amazingly I can say that within 1hr & half his head tilt had resolved, as my vet said you wouldn’t know he had head tilt only hours before. He will still have his panacur for a while yet but with head tilt it is so vital that they get to the vet early. Although head tilt can be caused by a varying degree of underlying issues, for e.Cuniculi the quicker they get to the vet, the quicker they get anti inflammatory medication, the better the chance of reducing permanent damage.

So here is the little cutie


image

And finally the WoW Petition surpassed 100,000 signatures! I do not believe that the government will necessarily do anything positive that the petition asks for but the more we can highlight these issues & the more we can bring these issues to the attention of the general public, the better they will be informed of the injustices that are occurring.

http://epetitions.direct.gov.uk/petitions/43154