Archive for October, 2012

Language Check – Assisted Dying Campaigners

I have this conversation a lot so I want to get it written down for ease of referencing back to later. If you are not the kind of person who appreciates someone suggesting that you may have been unintentionally offensive to sick/disabled people and explaining why then I wouldn’t bother to read the rest; enjoy the rest of your day! If on the other hand you want to read on so that you can look for ways of improving your argument and/or being more intersectional, then you are welcome to read my thoughts on the issue.

Assisted dying is a issue many people feel pretty strongly about and is a topic that regularly raises it’s head in our society. It’s also one that has many overlaps with the world of sickness & disability; I don’t think I need to explain why. Unfortunately a lot of the language used to talk about assisted dying is dripping with non-sick/disabled privilege and thinly veiled disablism (ableism for many of my non-British readers). Now, I am sure that the vast majority of assisted dying campaigners are not being intentionally disablist. I’m sure many probably feel quite shocked to hear that suggestion, given how hard they fight for the rights of terminally ill people. Still, all because one doesn’t intend to appear unsympathetic to a group doesn’t mean they are incapable of being hurtful or offensive by mistake.

There is a myth that living with many of the trappings of disability is automatically miserable. Pain, discomfort, differently functioning body parts, loss of control of body parts and/or the need for assistance are spoken about as a fate worse than death. Something that needs to either be overcome or hidden away. Very rarely do we hear people in the media talking about just living with it; how even though some things are different in many ways they are also very similar.

There is a real risk that the language used by assisted dying campaigners can fall into the trap of re-enforcing this unhelpful stereotype. When campaigners talk about “…the indignity of needing care…” or “…the misery of living in pain…” they perpetuate the idea that living with pain or needing assistance is somehow always unbearable. The message I hear, and that many others who live with impairments that cause pain, confusion, sensory loss and/or require extra assistance hear, is an intensely negative one: that, to be blunt, death is better than having to ask your partner to dress you or having to take a cocktail of drugs.

Of course one can’t ignore that for very many people (especially the currently non-disabled/ able-bodied) the thought of living in pain or needing care does seem like a fate worse than death. I can’t be alone in having people comment (intending to be somehow supportive) on how they would have killed themselves, or wouldn’t be able to live, if they had my condition. This is something I could do without hearing to be honest. When I am having a bad day I don’t need those messages about how no one would blame me if I killed myself haunting me. I try to explain, often to disbelieving folk, that the reality of the situation is often extremely different. Our bodies are amazing things and we all learn to cope and adapt to our new circumstances. What seemed so scary before suddenly becomes everyday. What makes this process hard is continual messages from society that our illness, disability or impairment is either something that we should be able to completely overcome so that we can live “like normal people” or is so bad that we should give up. It is harder to live with a new (or old) condition when we are told that care is something that causes loved ones physical and mental distress, is something we are undeserving of, or is something we have learnt to fear because of it’s chequered history of abuses.

I guess what I’m trying to say is that impairments and disabilities are things that we can often live with and in themselves shouldn’t be treated as terrifying things. The things that we need to look at are the reasons people are scared of needing care, scared of having to depend on others, scared of not being able to work, scared of needing equipment and automatically scared of ill health & disability.

Now, I’m not against assisted dying as a concept. I feel that people who wish to choose their time of death and are not currently being coerced by societal pressures, mental health problems or others should be able to do so. I am not trying to suggest that all conditions are things people should be forced to live with, I can only speak of my experience of sickness & disability and that of talking about these matters with other sick & disabled people. I am also not trying to be a mouthpiece for all sick & disabled people, I am sure there are many out there that don’t agree with my take on things. All I am trying to do is suggest that their might be a better way of doing things that does not contribute to harmful stereotypes about disability. I want to challenge people who simply haven’t thought about, or don’t think about, the impact which broad sweeping statements about ill health, degenerative conditions and dependency can have on those that hear it; specifically the effect it has on those who live with such conditions daily.

So, I respectfully ask that those engaged in the debate, particularly those pro-assisted dying, think before they speak and consider the impact of their words on the chronically sick & disabled people who are listening.

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Birmingham Social Inclusion Green Paper Consultation

Today I discovered that a Birmingham based group, Be Birmingham, is launching a consultation on a paper they are putting forwards to try and improve social inclusion within the city.


You can read the consultation here;  Social Inclusion Green Paper Consultation

I think it is a wonderful idea so I have decided to try and see if I can engage with it. After having a read through it with an eye primarily for adult disability issues I composed the following email to them. It’s not wonderfully written (I blame the patriarchy my drugs) but hopefully it will help remind people that might not have ever had cause to engage with disability matters why it’s so vital that we do at this point.

Here is a copy of the email I sent;

Hello,  


I was reading through the Social Inclusion Green paper and I can’t find many areas that really reference adult disability in any way, other than pg 33. I see lots of mentions of social care for older people, children and families as well as a desire to make Birmingham more accessible and inclusive of people of all races & cultures; all of which is wonderful. Unfortunately I see nothing on the impact of welfare reform on disabled people, such as these issues;

  • Disabled people are disproportionately represented among benefit claimants due to educational attainment issues, higher poverty, lack of accessible work and employer discrimination.
  • 20% of people that currently DLA (to cope with the increased living costs of being disabled in a all too often non-accessible world) will be losing that income when PIP is introduced. DLA is already very hard to claim, you need a lot of letters and evidence from consultants, nurses, doctors, social workers and carers to realistically be awarded the benefit and even then chances are you will still be refused and have to go to tribunal.
  • DLA currently acts as a ‘gateway benefit’; those in receipt of it are eligible for blue badges, disabled persons rail cards, the Motability scheme (which is crucial if you need an adapted car or a electric wheelchair – something the NHS rarely can afford to provide) and a whole host of other schemes. It is heavily assumed PIP will preform the same role, except less people will receive PIP which means fewer people will have access not only to the extra income but the schemes that help make that extra income go further.
  • Contributions based ESA has been time limited to one year, which means those who have a working spouse/partner no longer receive any income of their own if their partner earns over £7500 pa. This massively increases financial dependency (something that can be a key cause of abuse), financial hardship and adds additional stress to families already struggling to adapt to having a suddenly chronically sick/ disabled person in their family. 
  • The loss of Legal Aid to challenge ESA & DLA/PIP decisions  At the moment 40% of those found ‘fit to work’ who choose to challenge that decision at tribunal are found ‘unfit to work’ and placed on ESA. 
  • Moving of people from Incapacity Benefit to ESA which means going through heavily criticised assessments where thousands of severely disabled people are found ‘fit for work’ until the decision is overturned after a stressful appeal & tribunal which can easily take a year due to the overcrowding of the tribunal system because of the flawed ESA assessment process. 
  • The bedroom tax now means that disabled people who had a extra bedroom to store essential medical equipment like dialysis machines or to provide a bed for carers/ partners that are unable to share a bed are being put at a disadvantage. Lord Freud stated during the Welfare Reform Bill debates that he believed that local councils would use the hardship fund/ social fund to help with these extra costs, but if the hardship fund continues to be only be available for short term aid then I can’t see this actually happening unless the money is explicitly ring fenced. 
  • The Independent Living Fund is also being abolished. The Independent Living Funds were set up as a national resource dedicated to the financial support of disabled people to enable them to choose to live in the community rather than in residential care. Without access to it many fear a return to the dark days when disabled people were forced into care homes and kept segregated from the community, reducing diversity and quality of life.
  • Changes to local council tax means that many disabled people who are not deemed ‘disabled enough’ to receive a disability premium because like many they either do not claim DLA, are waiting for a tribunal decision, have only been disabled for a few months or were not deemed disabled enough to warrant it will not be fully protected by the council and will have to find a way of paying a chunk of their council tax bill. 

There is a pernicious myth that charities provide money & services which will make up for the huge reduction in personal income. Sadly this isn’t the case. Charities use their money to support their awareness raising work, research and to man advice lines and centres. Most do not provide grants, adaptations, equipment, food parcels, money towards heating or care. Those few that do only provide very limited amounts to a few people with specific illnesses/disabilities in very specific circumstances. There is also another myth that fraud is rife when it comes to disability benefits, currently the fraud rate for DLA (not including errors) sits at 0.5%. Even if all the people committing fraud (and that figure includes those who’s conditions have changed and aren’t as disabled as they once were) are weeded out by the new assessments PIP will be bringing in 19.5% of those who loose out will be ‘genuinely’ disabled people who need the extra income.  

That is just one area in which many disabled people will be negatively affected and Birmingham needs a coherent policy to deal with. These issues are real and will increase isolation (which isn’t an issue that just effects the elderly), increase the risk of abuse (at a time Disability Hate Crimes are at an all time high), increase poverty amongst some of the most vulnerable people in the city and potentially increase the amount of people being forced into care homes as a result of a huge withdrawal of funds and services. We live in a city where many pavements don’t have lowered curbs which makes them non-accessible for those with mobility issues, many traffic lights are not set up to be used by those with visual impairments, the local ESA assessment centre at Fiveways is not wheelchair accessible, local high streets are too narrow to allow for ramps into shops, the Disability Discrimination Act 1995 & the Equalities Act 2010 are only enforced if the disabled person discriminated against can afford the cost (both in financial and personal terms) of taking the offending business to court, the Ring and Ride scheme has started to charge, accessible social housing for those with mobility impairments is primarily reserved for over 55’s, there are huge cuts being made at every budget to Adults & Communities (which lead to the ill fated decision not to provide support for those without ‘super critical’ needs) and there is little/no representation of disabled people in our cities decision makers. Things need to change and I think your paper could be a big step in the right direction.  

I would be more than happy to meet with you and discuss these issues and help to solidify some additional proposals to strengthen your policy when it comes to disabled people. I am not affiliated with any charities but I am a disabled woman who has dedicated herself to trying to improve the lives of disabled people, especially in Birmingham.  


Warm Regards


If you live in Birmingham and feel strongly about these issues I can only suggest that you consider contacting the group and getting involved.

You can contact the campaign in the following ways;

  • Write to:
  • Jackie Mould
  • Giving Hope Changing Lives
  • PO Box 16253
  • B2 2WS
  • Via Twitter @fairbrum or use #fairbrum
  • Telephone the Partnership Team on  0121 675 3499

Complaining About A NHS Mental Health Service

In my experience many people want to complain about things they don’t like within the NHS. Be it staffing levels, access, choice, quality or any number of other different things. As today I have put aside a little time to deal with a issue within my local community mental health trust I thought I would blog how I went about dealing with it so that others who might be put off by not knowing how to go about it or the stress of doing so can see how simple it can be to make your voice heard.

The Problem

I became a patient/service user back in late 2009/early 2010. I met my psychiatrist once then I was informed  that he had left the practice and that I would either see my new doctor or a temporary locum at my next appointment. Every 2/3 months since that point I have seen a different locum doctor, sometimes I’m fortunate enough to see the same one twice before they move on. Each time I have to see a new doctor I feel I have to start from scratch with them, combat their assumptions/prejudices, explain why I use a wheelchair, talk about my treatment and then debate if the ‘new pill!’ they want to put me on would really be any better than my current medication. I don’t feel like I am getting any value out of these appointments, in fact more often than not they simply upset me because I feel I have to talk about chunks of my history I am not comfortable talking about with someone who won’t be there next time I visit.

Every time I meet a new locum I start by asking if they are permanent and every time they tell me that they have asked to be made permanent but that it’s up to BSMHFT (Birmingham & Solihull mental health foundation trust). So it appears that for some reason or another BSMHFT have decided that they are better off using locums rather than hiring a full time doctor. My cynical side tells me that it is a cost cutting exercise because locums don’t accrue rights & pay rises the way a permanent staff member would. Still, regardless of BSMHFT’s reasons the situation is very far from ideal and I believe is upsetting a number of patients, not just myself.

How I decided to go about making my voice heard.

The first thing I do when I want to complain/make my views heard is try to work out who I need to talk to. When I have issues with a hospital I know that I can just contact that hospitals branch of PALS (Patient Advice & Liaison Service). If my issue is with a GP or dentist I would contact the surgery to ask for details of the complaints procedure. As it’s my local mental health team I would normally call them up and ask for details of the complaints procedure but past experience of doing that hasn’t gotten me very far so instead I look up the BSMHFT website and look for contact details.

Luckily for me BSMHFT has a branch of PALS so my second step is to call them up and to ask how best to deal with the issue. They were very helpful and suggested that my first stop should be trying to talk to the manager of my local community mental health team (CMHT), then if they were unreceptive I should contact PALS again to get some help putting in a complaint.

Next I decide to follow the advice I’ve just been given and call my CMHT and ask to speak to the manager about this. I’m really rather nervous but I really think this is too important to let that put me off. The manager was very pleasant and started by asking if I wanted to talk over the phone or if I would rather make a face to face appointment. I opted for the phone (because my electric wheelchair is broken at the moment) and then explain that I wasn’t very happy with the state of play & listed – briefly – my reasons for this. The manager listened and then proceeded to explain that the CMHT would like the position filled and that there are a lot of patients service users who feel like I do. They are being told that there are plans in place to have a permanent consultant but, they don’t want to make any promises because they’ve been told that before then been forced to back track when nothing came of it. It seems that people think that the position is being left open for a couple of reasons; firstly, as I suspected, locums are cheap and lacking in employment rights and secondly, by having an open position it makes it easier for the trust to reshuffle employees should there be another wave of cuts. The manager agreed to send out a formal complaint form so that I could make my objections known with the hope that if enough people do that it will put pressure on those responsible for allocating staff to fill the position.

Now it’s just a case of waiting for the complaints for to arrive which I will fill out and send off. It’s really important that I do because the chances of todays phone call actually being mentioned to the people who need to pressured (those allocating staff) is pretty slim. A formal complaint will be logged on the system and added to any others that have been sent in and those will make it to the desks of the decision makers.

I hope this might have inspired a couple of people to make their views heard and given a bit of support when it comes to finding out how to do so.

Communication Barriers

I’m back on-line  Three months without internet is hard. Very hard. Especially when most of your daily contact with the outside world happens via the web.

I’ve been offline because we moved house, I now live in a wonderful little bungalow in a nice area surrounded by friendly neighbours. Sadly the council poured tarmac over our local junction box and it’s taken months to locate it and dig it up so that we could get our phone line & internet connected. Over the last few months I’ve missed a lot of stuff, the protests over ATOS’s involvement with the Paralympics, the Paralympics themselves and all the media coverage, party political conferences, dodgy TV, attacks on women’s rights and millions of other things that didn’t make it into the news.

I have spent a couple of months now dealing with a massive flare up of depression and anxiety which I realise was in part because I have felt massively isolated since moving. Not only am I physically further away from most of my friends, I lost my ability to communicate with them and keep up with their lives. When I can’t meet people face to face I, like many others living in today’s society, fall back on social networking or emailing to keep up to date. Without that I found myself really struggling. I started falling into some very negative thinking patterns and lacked the easy access to support and positive reinforcement to challenge them in an effective manner.

It’s really hammered home for me just how important the internet & social media are for me and (I assume) for many others in similar positions. Actually, it’s hammered home just how important the ability to communicate with others and feel heard is. Regardless of the medium used I feel it’s very important that everyone has a way of expressing themselves to others and communicating their needs. Freedom of expression is a Human Right after all;

“everyone shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of his choice”

These last few months have left me thinking about how easily that right is stripped from people. Those who have difficulty communicating in a socially acceptable manner, those who are bullied/coerced into silence through fear, those who are simply never provided the equipment or assistance to be able to communicate with others in a mutually meaningful way and so on and so forth.

As attacks on vulnerable people step up in our society it’s crucially important that we don’t forget about those who can’t join the debate because they are silenced by a lack of access.

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