Archive for the ‘ charities ’ Category

On Cancer & Chronic Illness

Heya! It’s been a weird year for me, loads of stuff, a lot of it crippling anxiety and a complete loss of motivation, has prevented me from blogging. I’m sorry about that.

As you probably know, I’ve been dealing with chronic health problems for years now; chronic pain, vomiting, nerve damage, gastrointestinal damage, and joint hypermobility. I developed a hiatus hernia in September which was having some pretty severe side effects, so I had an abdominal CT scan at the start of this year. It didn’t just find the hernia, but it also found a shadow on my right kidney. I had a more detailed scan in March, and in April a very nice Urologist and a Macmillan nurse told me the mass was solid, and most likely cancerous (over 90% chance), otherwise it would be precancerous with a very high chance of becoming cancer in the future. They tabled surgery within 4 weeks, and got it out. I’m currently recovering after having a open partial nephrectomy and getting the 21 staples removed this morning.

I’ve been thinking about the ways in which cancer is treated differently to other chronic illnesses, many of which also have pretty depressing prognosis’s; Continue reading

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Job Hunting – Part Two

I said I’d write a follow up when I had more news and now I do!

I did apply to a service designed to help disabled people into work but discovered to my dismay that they wanted a complex referral from social services. Not having any idea how to sort it out and quite frankly not having the energy to do so I have not gotten around to sorting that out.

I have kept one eye on the governments Job Search website but to no-avail. The closest I’ve come to a really flexible job that would fit around my health issues was the mistakenly advertised “Babe Chat” position. I’m not anti-sex workers, but it’s not something I feel comfortable doing. I also don’t imagine for one second I’m exactly the kind of person that Loaded TV were hoping to recruit *grins*

I did start checking charity websites and looking at jobs within the Tribunal Service as well as considering applying to be a magistrate. Sadly I don’t meet the health requirements to be a magistrate, and the tribunal service isn’t recruiting until March 2013. Luckily I did spot a vacancy with a mental health charity, working about 10 hours a month, helping with quality assurance work. I applied back in November and was fortunate enough to get a telephone interview in early December. Just before Christmas I got an email inviting me to start training in Spring! I’m pretty darn chuffed, but given the wait before starting and the current economic situation I’m trying not to get my hopes to high – just in case it gets rescinded. 
I’m going to leave the job hunt there for the moment as I have been fortunate enough to find an opportunity that appears to suit my health condition as well as being physically & mentally accessible. I imagine I will have more to add when I have a start date and I find myself needing to deal with the DWP. 

Birmingham Access Guide Launch – DisabledGo

Today I attended a launch event announcing the arrival of a access guide for Birmingham created by the organisation DisabledGo in conjunction with Birmingham City Council and sponsored by Marks & Spencers.

It began with a member of the council explaining Birmingham’s commitment to “addressing inequalities”. He then went on to talk about how this new IT support service would be a big step forwards in addressing a lot of the existing inequalities. I don’t quite agree with that, but I’ll explain that side of things later. Next up was a lady from DisabledGo who explained about the principles of the access service.

  • It covers 700 venues across Birmingham including mixture of independent businesses and larger chains
  • It covers theatres, cinemas, restaurants, shops, health care providers, education providers, travel, accommodation, banks, professional companies and more
  • These were chosen from the most popular recommendations put forwards by community steering groups at initial consultations
  • Disabled surveyors with various impairments visited each venue using a standard set of questions produced in consolation with disabled people & disabled peoples organisations
  • Users will be able to grow the database by suggesting new places to add as well as commenting on out-dated/ incorrect entries
  • There will also be steering groups twice annually to help direct and grow the guide
  • It is the 90th Access Guide launched by DisabledGo
  • It was match funded, Marks & Spencer provided £40,000 and the council are matching it over 5 years to ensure longevity of the service
  • The service will recruit more local volunteers to act as surveyors as it grows in size
  • The service will be made available to those without internet access through training of front line council and tourist information staff. It will also be possible to get hard copies of the guide.

The guide itself is pretty good. The website; www.disabledgo.com is  available in a range of colour contrast options, variable text sizes and has pro-reader settings.

You can search via post code if you are a local looking for services in specific parts of the city or, if you’re coming to visit then you can choose by area (for Birmingham you’d choose the Midlands, then choose Birmingham City Council from the list of councils covered).

It’s by no means exhaustive, Birmingham has a lot more than 700 businesses, venues, medical providers etc. but it is a good start. Having had a quick look there are a couple of local pubs and restaurants I’ve been avoiding because they appear inaccessible which actually have level access hidden round the back which is rather handy. I still get pretty grumpy about using places that make disabled people use the back entrance or having to ask staff to move bins so we can get in via a odd fire-escape, but having the option of access is better than none. I understand that it’s a step forward and that pre-1990’s civic-planning and architecture was pretty much always built without access for disabled people in mind yet still, segregated entrances will never sit well with me. Anyhow, I digress. 

There were some problematic aspects with regards to the launch, which can be problematic with any initative helping a community as diverse as those who are disabled;

  • I was pretty much the only person not attending as part of a organisation/charity. There were very few individuals. That is an issue because an awful lot of disabled people don’t have contact with the select group of organisations attending. 
  • It was mentioned repetitively that DisabledGo wanted to work with organisations representing disabled people, which means that the views of charities/organisations like RNIB, RNID, Cerebral Palsy Midlands, Spokz People etc… and the often limited range of disabilities they represent will have a larger sway over the direction of content.I would rather see the content driven by all potential users. Even those that don’t attend day centres and are not in frequent contact with charity representatives.
  • There was little there covering access from a specific Mental Health standpoint from what I saw & heard. Though, much of the guide could be very useful to people with Mental Health issues, especially in the anxiety clusters.
  • They give a mark to companies that say their staff have received disability awareness training, but there is no scale for how through this training is nor whether it is kept up to date. From personal experience working with some major UK supermarket chains diversity training is often a 15 min talk given by someone with very little knowledge about the field covering the bear minimum. As a disabled person I find that this ‘training’ more often than not doesn’t seem to stay with staff or stop them acting in a less than ideal manner which makes that certification rather pointless in my opinion.
  • The closing message by one of the project directors spoke about how this project wasn’t intended as an ‘ DDA/equalities act audit’ and how the council was using this to put ‘nice’ pressure on businesses by explaing that their is £18bn to be made from disabled customers in the UK every year and giving them a gentle nudge towards becoming more accessible in small ways. he was very keen to emphasise that they didn’t want to ‘force’ businesses to become accessible because that might create bad feeling. There was also mention that we shouldn’t be ‘too mean’ to business that don’t live up to access requirements. I, personally, feel much more radically about these things. If a business is not DDA/Equalities Act compliant I feel they should be told they are breaking the law and that they need to deal with the breach asap. Businesses will always have an excuse not to part with money in the short term for staff training/ colour defined steps/ wheelchair ramps/ hearing loops and so on and so forth. I don’t think a business’s owner’s right to feel comfortable exceeds disabled peoples rights to basic choice, access & independence. If we don’t start enforcing the equalities act the only people who will suffer are the already oppressed and disadvantaged.

All in all I though the product they were launching is a very useful tool and will become more so over time if plenty of people buy into it. I for one plan to take advantage of it. Still, there were issues with how it’s being rolled out and in my mind it is being used by the council to cover some rather counter-productive attitudes to disability and access.

Rights Not Charity

“Rights not charity!” has become one of my favourite chants at protests, but I’m starting to realise many don’t quite get what it means (or what it means to me at any rate) so I thought I’d talk about it a little. sadly I’m on quite a lot of strong painkillers so it might be a bit jumbled – sorry in advance!

What is expressed by the phrase ‘rights not charity’ is the desire to have independent living and equality of opportunity as a human right rather than something that is provided by a benevolent philanthropists. Our government seems to be slowly trying to cut the amount of support* they are willing to give to sick & disabled people in the vague hope that charities will cover the gap. We can even see this in the way government incentivises donating to charity to escape being taxed.

To many onlookers that might seem like a good thing. They’ve seen TV shows where charities provide wheelchairs for veterans or holidays for kids with leukaemia so wouldn’t it be a good idea to let them do more? They are caring and loving after all. Well, I don’t think it would be a good thing and nor do many other disability campaigners. I shall endeavour to explain why now…

In a not very scientific experiment I’ve been asking family and friends to name some charities that deal with sickness and disability and most will said; British Heart Foundation, Macmillan Cancer Support, Marie Curie Cancer Care, Cancer Research, Headway, Scope, Whizz Kids, Alzheimer’s Research UK and the Royal British Legion/ other military charities. Pretty much all the ones with charity shop presence. Thanks to some creative use of the bold button you may have noticed that pretty much all of those charities are set up to deal with a particular impairment or people meeting specific age or occupational criteria. In that list only Scope claims to deal with all disabled people regardless of age, past occupation or impairment. Unfortunately the service that they offer which covers those people is an advice line. Their community based services (like educational & employment services) to people living in certain geographical areas and/or people who have ‘complex care’ needs. This still counts many disabled people out. It’s also not like they can help fund equipment, PA’s, transport, retraining for those with disability but non-complex care needs or critical home improvements.

Charity is all well and good if you have certain conditions or meet specific criteria but you are stuffed if your need is as just great but you don’t. That’s because charity isn’t fair. When a charity dealing with a aspect of disability or (normally) a specific illness or impairment gets £1 million pounds it gets spent on it’s pet cause. When the section of a local authority that deals with disabled adults gets £1 million it gets spread over the all the service users they cover. Those who need extra help because they smoked or had problems with alcohol as well as those who have Parkinson’s or served in the military. For that reason I would rather see money to support the disabled going to LA’s rather than charities therefore I’d rather see big earners incentivised to pay taxes to help the vulnerable rather than to donate to charities.

I will use a personal story to try and illustrate this: When I first admitted to myself that I needed a wheelchair to get around I went to see my GP. She agreed with me and we filled in the application for one from the NHS. It was explained to me that the NHS will only give manual/attendant powered wheelchairs to those who can walk a couple of meters (even if it does cause severe pain etc… to do so). Whilst I was waiting for my chair lot’s of people asked me why I didn’t contact a charity to get one. The reason I didn’t was because there are no charities that provide wheelchairs for those over 18 who don’t have a specific disablement or have come from a specific background (like the police force or military. The NHS was my only option. The same happened when we needed adaptation to our home, it was only the council that could help me. It happened again when and when I needed help funding re-training, no charities could help my only option was the government (not that they would help either). I’m not saying this because I believe that because I don’t have access to charitable aid that no one should. I’m also  not for a moment trying to say charities don’t do some good work, they do. What I am trying to say is that they are not a good vehicle for providing for the needs of all sick, disabled and otherwise vulnerable people. 

Charities also very often help to peddle the idea that sick & disabled people are objects of pity. We’ve all seen the adverts with the sad disabled or sick person made happy by charitable donations. They propagate unhelpful stereotypes and damage the cause of disabled people trying hard not to be seen as pitiable and miserable. The image below shows a Damien Hurst sculpture called ‘Charity’ which shows the kind of image used by charities to highlight the ‘plight’ of disabled people. We want rights, happiness and as much independence as we can get. We do not want pity handouts going to a few whilst the many are ignored.


The harsh reality for many of us is that charities don’t help us. What would help us is seeing our rights to an independent life fully backed up by the law and a ombudsman so that the government couldn’t strip resources from us or use easily misinterpreted phrasing like ‘reasonable adaptions’ to stop us from accessing public services and living like others.

That is why I chant ‘Rights Not Charity’ and will continue to.


* removing 20% of DLA recipients (even though the fraud rate is 0.5%), removing the ILF, cutting social care budgets, making it harder to get Direct Payments, removing Legal Aid so that vulnerable people can’t challenge unjust welfare decisions, making it harder to get council housing or adaptations, the bedroom tax, the WCA, removing Contributions based ESA after a year and a whole host of other nasty initiatives.

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