May 022016
 

This is a post for Blogging Against Disablism Day 2016. Please visit the website to see the other posts. It’s a day late as it’s my second attempt at a post (thanks brain fog).

These are things I want to see. It is not exhaustive.

I want to see more people like me in fiction, as normal characters. Disabled, different, maybe chronically ill, but that being only part of what the character is about.

I want to see more progress in making things accessible for more disabled people. More ramps, lifts, alternative formats for information. More changing places toilets (toilets with a hoist, adult changing bench, plenty of room for a wheelchair and carers and other facilities for severely disabled people). Less blocking access, displays making it impossible to pass in a wheelchair, less unnecessary noise and strobe lights.

I want to see disabled people accepted for who they are. Not used as inspiration porn or pitied. Disability is a normal part of life so should be treated as such.

I want less overt and covert discrimination against disabled people. Less refusal to make reasonable adjustments. Less making disabled people jump through hoops non-disabled people don’t have to do.

I want to see more access information provided on websites, and the websites themselves to be accessible. I want that information to be easy to find, not requiring looking through layers of menus to discover.

I want people to see disability equipment to be seen for what they are, tools that enable people to do what they want easier (or at all). Wheelchairs and scooters are awesome and allow so many people to do more than they otherwise could.

I want people to be valued for who they are, not what they’re able to do. We all deserve a full, peaceful, dignified life, making our own choices as much as able.

I want variable disabilities to be understood better. Just because someone can do something at one time, that doesn’t mean they can do it the next time, or in different circumstances, or more than once.

I want the harassment of disabled people to end, especially by governments and the media. I want benefits to be easier and quicker to claim, without the presumption that we’re all frauds. We’re not to blame for the financial crisis.

I want to see disabled people living where they want, with the help they need to do so. I want to see hospitals only used when absolutely required and for the shortest period that’s needed. I want carers to receive the help they need to care for their loved ones if they want to.

I want people to be seen as individuals. We all have our own life experiences, likes, dislikes and thoughts. We’re not just a collection of diagnoses.

I want to see a nicer, more equal world. I believe it’s possible.

 Posted by at 1:20 am
May 012015
 

 

Blogging Against DisablismThis post is part of Blogging Against Disablism Day 2015. My brain is very foggy so apologies for any mistakes.

There’s an election next week here in the UK, and I’m scared. The last five years have been very difficult for my friends and relatives, and it’s looking likely that it’s just going to get worse. We’re some of the least affected I know, yet even we’re feeling the effects of the cuts and sigma caused by this coalition government. Most of it is because we’re disabled and not a “hard working family”.

I’m one of the lucky ones in many ways. When moved over from Income Support to Employment Support Allowance, I was placed directly into the Support Group without needing a work capability assessment (the Support Group is for those considered unable to work now or in the near future even with support, though the criteria is mostly unrelated to ability to work). My Disability Living Allowance renewal (I’ve not been moved over to Personal Independence Payments yet) went through without an assessment as well. Now that’s probably due to being completely bedbound and having mountains of supporting evidence, but I’m incredibly grateful. It’s also very rare.

The coalition government’s stated aim was to reduce the amount of people on benefits, especially the disability and illness related benefits such as the ones I’m on. They’ve managed to do this, but not to the extent they said they were going to, as most people were more ill or disabled than they realised and the fraud rate was much lower than they implied. What they have done is caused a lot of harm, and even deaths through sanctions, delayed and denied benefits, and the effects of other cuts culminating in people no longer being able to manage when previously they could.

It’s already very hard. If you’re not a “hard working family” (working full time – part time even if you’re ill or disabled doesn’t count) then none of the big political parties want anything to do with you. If the Tories get back in, they want to extend the sanctioning system they’re already using against the unemployed and those in the work related activity group on ESA to those who are working part time, even if there’s no full time jobs available. They want to tax DLA and PIP,  reducing the incomes of the ill and disabled further. That’s before we get to things like universal credit, the benefit cap, and the other ways they’re apparently going to slash the benefits budget.

Labour have also gone full in with the hard working families talk, and have said they don’t want to be the party of those on benefits (so people like me). The Lib Dems supported the Tories with all the benefit cuts, so no matter who gets in (as with the first past the post system it will be one of the big parties, even if they have to form a coalition) it looks like it’s only going to get worse for those who are ill or disabled in the UK. UKIP are scary with their racism and bigotry, and though the Greens are the closest in terms of politics to my views they support euthanasia, which is dangerous in a society that considers disabled people worthless.

I’m too ill to work. Even the government agree with this. Johan looks after me, which means he’s on call 24 hours a day, is frequently sleep deprived, and he still hasn’t got the help he’s been assessed as needing by social services. Esther can work part time, but even though there are very few full time jobs available and many people chasing each one she doesn’t count either, despite doing voluntary work on top of her paid job.

There’s already been an increase in disability hate crime, mental illness, worsening health and deaths due to the government and the scrounger rhetoric. Friends who have ended up begging for help as they have no income while waiting months for assessments and to hear whether they’ve jumped through enough hoops, friends who have ended up in hospital because of the stress.

I hope I’m wrong. I hope that whoever is elected in on Thursday will reverse the budget cuts, tightened benefit criteria, the sanctioning system and actually work to improve life for those of us who can’t work full time. I don’t have a problem with fair assessments for benefits, or for helping those who can work with support to do so, but it needs to actually be support, not just threats to remove someone’s income if they can’t jump through often impossible hoops. I don’t know who’s going to be in power next week but there’s a chance to improve things and I want them to take it.

 Posted by at 3:53 am
May 012014
 

Blogging Against Disablism(This blog post is part of Blogging Against Disablism Day 2014. Is is hosted at http://tinyurl.com/BADday2014)

One of the hardest parts of disablism (or ableism) to deal with is how it invades your thoughts. All those insults and comments that have been said about or to me stick in my brain, and come out when my disabilities affect me. The thoughts that I’m not really disabled, that I’m just lazy or stupid or selfish or putting it on, things that have all been said to me by people aware of my disabilities.

I know logically that being disabled does not make me a bad person. Having impairments and needing help and support has no impact on my worth. Yet years of bullying, often based around my difficulties, mean I find it hard to accept sometimes. This isn’t helped by the current treatment of disabled and vulnerable people in the press, or how a lot of people talk about disabled people.

Recently on the news there was a story of a mother murdering her autistic son and then killing herself. Most of the articles were sympathetic to the mother, and went on about how difficult her son was to deal with. The fact a child was murdered because of who he was didn’t seem to matter. As an autistic person, it scares me, and it feeds into the thoughts that I’m not worth it. He deserved to live, and there is no justification for his murder.

Johan often tells me off for apologising when I ask him to help me. I can’t stop doing it though- years of being told I didn’t deserve it mean I feel guilty when asking for help, even though logically I know that I need it and Johan is quite happy to help me. I even tried to justify the neglect I suffered in the care homes for the same reason. If it had happened to anyone else I’d be outraged and want to do what I could to fix it, but because it was me and because I only deserved bad things because I’m not that ill/putting it on/it’s all in my head I felt guilty for even mentioning it.

Before my ME got bad there was no real external sign I was disabled, though I was odd enough to be called names/beaten up/literally trodden on. I was blamed for my difficulties, often by the people who should have been supporting me. The result was years of depression, and even that came with it’s own disablism. Though I’m no longer depressed, I still have times where I think I’m lesser because of my disabilities. I know I’m not the only disabled person who has this.

All people matter. Everyone should get the help they need, regardless of who they are. If someone can’t do something, that should be accepted and they shouldn’t be treated badly because of it. They also shouldn’t be denied the chance to do what they are capable of. No matter what people think, this is true. Now I just need to convince my brain of this.

 Posted by at 8:11 pm
May 012012
 

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I believe this is the first year I’ve actively participated in Blogging Against Disablism Day. I wasn’t sure I’d be participating this year either, but I’m well enough to write a blog post so am doing so 🙂

I have more than one disability. I have severe M.E, which is the most obvious one as it means I can’t walk so use a wheelchair when I’m able to get out of bed. I am autistic, dyspraxic (considered part of autism) and have anxiety, which is mostly related to autism. I also have a history of severe depression and other mental health issues, which luckily I have recovered from.

When most people think of making things accessible, they think of ramps and lifts. Ramps and lifts are awesome things and I wouldn’t be able to do as much as I can without them. It’s brilliant that more and more buildings and services are becoming accessible to those with mobility problems, though there are still places that need a lot of work. The thing is, mobility problems aren’t the only types of disability. For me, the autism, dyspraxia and anxiety, and previously depression also are disabilities, which I require help with and mean I have different access needs. Of course, other people with different disabilities such as sight or hearing impairments, learning disabilities and such will also have access needs that need to be taken into consideration, but a lot of the time these are overlooked as people automatically think of wheelchairs.

One of the biggest areas of difficulty I’ve had related to accessibility is regarding being able to access services without using a telephone. I have auditory processing difficulties that make hearing someone on the telephone very difficult, especially if the other person is in a busy place, a call centre or the line is bad. I find it difficult to know what to say on the telephone, especially if I’m unable to predict what the other person is going to say. I also have periods of time when I completely lose speech, and have no way of knowing when I’ll be able to speak reliably again. Add on to that anxiety, and using the telephone is an exceptionally difficult task that I try to avoid if at all possible. When I also had depression and for a while afterwards it was just impossible. (The M.E also makes it difficult as conversations are very energy draining without adding on the extra issues, but I’m going to ignore that for now.) To add to things, Johan also has similar difficulties, though in most cases he finds it a little easier than I do.

Now, difficulty using the telephone is relatively common among those with mental health problems, as well as for autistic people. Despite this, one of the hardest services to access without using the telephone is mental health services. Crisis care here is accessed by telephone, a lot of the time appointments are made or changed via telephone, contacting social workers or CPNs is done by telephone. When I was last in contact with mental health services about 18 months ago it was still impossible to use email as a substitute, and when Johan was in contact with them more recently he was also not given an email address, but just a telephone number. If you needed to speak to your social worker urgently and couldn’t use the telephone, it was a matter of tough- either you get someone else to do it for you or go without. Letters can take a couple of days to get to the recipient (ignoring issues of being able to get out to post it) which may be too long in a crisis. Of course, deaf people will also have this problem, so it’s also discriminating against them.

Some areas of the NHS and social services are embracing new technology to enable more accessibility. I communicate with my (physical disability) social worker by email, as I do the OT who is arranging adapting my flat and a few other people. In a lot of doctors surgeries it’s now possible to arrange appointments and order repeat prescriptions online, as well as by telephone and by going into the surgery itself, and more are signing up to that as time passes. Unfortunately there are still a lot of organisations and services though that assume everyone either has the ability to use the telephone themselves or has someone willing to do it for them. I’ve had to send angry complaints to a few companies who insisted that they could only do certain things by telephone (in most of those cases, when I told them they were being discriminatory an alternative method was suddenly found, often meaning an email address).

I’m aware I’ve concentrated on one very specific area where things aren’t as accessible as they easily could be (a lot of the places such as mental health services are already using email internally, so providing an email address for clients who need it wouldn’t be difficult to organise). This is just an example though- there are lots of other areas where services could make things more accessible to more people that they probably don’t think about. I wanted to think of more examples but my brain is too foggy now, so I think I will leave it there. I suggest you go to the main Blogging Against Disablism Day 2012 page and read the other blogs on there 🙂

 Posted by at 7:25 am