Union of Disabled People: My Ideas

For this post to make sense to any regular readers, please see this blog.

First off I just want to say that I think this is an excellent idea, and could really push forward the voice of disabled people in this country. I agree with everything Sam Barnett-Cormack said here, but I'd like to take the opportunity to add some thoughts of my own.

I want to make it clear from the start, but without rambling into too much detail, that some of these ideas have been floating around in my head for a while, and I feel that they could find a 'home' in this proposed organisation. Other ideas I have developed since this union idea was proposed.

I have been reading a lot of what has been said about this potential organisation (although I am aware that I will have missed some stuff due to not being on Twitter). The intention has been to be very open to ideas and wanting to build the organisation from the ground up. From a personal perspective, this has been great. It is allowing me to have a say and put my ideas out there, when I'm not very well connected with the disabled community in the UK and haven't been part of organising the campaigning which has taken place over the past few years .

However, there seem to be an awful lot of people going 'where do I sign up?' and just wanting it all to be there for them to join. The fact is that some people, like me, are interested in the fundamentals of the project, and others just want something tangible that they can sign up to (or not). There is also the issue of it being progressively more difficult to do something on a very practical level the more people you involve.

I think that a focus group needs to be formed. By all means, allow anyone who wants to volunteer for it, but we need a small group of people who are dedicated to the practical purposes of getting this thing off the ground.

Once the focus group is formed, publish who is in it and some contact details. People who don't want to be as involved need some clarity as they look in from outside. The purpose of the focus group would be to collate any ideas that are forthcoming (the group might want to ask the disabled community again to contribute their ideas, or perhaps survey them about possible ideas) and come up with a constitution and organisational structure. A draft could then be published for comment by anyone, and/or a survey could be used to determine what people think. The focus group would then finalise the documents, and facilitate nominations for the executive committee and open a membership list. The members would sign up and then vote in the first exec.

As the intention is to be very all-encompassing (an approach I wholeheartedly support), my view is that a robust structure is required to ensure that all the different areas of disabled life in the UK are covered. My vision for the structure would be the following:

• An executive committee, comprising a chairperson, secretary, treasurer and probably a membership secretary, along with a number of portfolio posts for different areas such as social care, transport etc.
• A number of focus groups, one for each area. The person holding the portfolio on the exec would facilitate the focus group which would be comprised of 6-8 people not on the main exec.
• Each focus group would research and plan projects for their area, and draw help from the wider membership for extra people to make the projects happen. This would spread the workload as much as possible.

Possible areas to focus on that I've thought of so far are: advocacy and peer to peer mentoring; access to businesses and services; transport and travel; social care; health; housing; leisure and hobbies; access to work and benefits; education; carers; hate crime and discrimination; family life. Some of these could possibly be combined in order to reduce the number of focus groups and exec positions.

To make this work on such a scale, I think we need at least 200 members.

I would like to see the organisation providing affiliate membership for existing DPOs and also localised groups such as access groups. This would promote networking and information sharing between groups, and also help focus groups plan projects that compliment and support rather than replicate work already being done.

I am secretary for the access group in my town, and I think local groups is a good model for tackling access issues. So, for example, the access focus group could, as it's first project, create a national network of access groups, with a central resource hub online. This would mean different groups could share ideas and knowledge. Also people wanting to start an access group in their area could be supported to do so.

The idea that's been floating around in my head for some time is the idea of fulfilling lives; disabled people having the opportunity to thrive and flourish as human beings, just as everyone else does. There is a kind of backstory to this in terms of my experiences and things I feel are important, which I have written, but this post is going to be far too long as it is. If anyone is interested, I can publish it as a separate post.

I feel this idea of fulfilling lives fits quite well into the union idea, because it's about all aspects of life, not just benefits, work, social care and health, which have been the major campaigning themes of the past few years. It's no good having access to businesses if you can't leave your home, and assistance to work is no good if employers won't give you a job. All issues facing disabled people interact and intersect, and to truly improve the lives of disabled people in the UK, we need to give some attention to all of them.

Some general principles that I think could be incorporated, that came up with when I was thinking about this vague idea of mine were:

• A self empowerment movement and mutually supportive community based on the idea that every disabled person has the right to live a fulfilling life and that disabled people are awesome at creating their own solutions.

• Fostering the rejection of society's ideas about us, and promoting a sense of self worth based on being a unique human being.

I see advocacy and mentoring projects being key elements of fulfilling these principles. I have a few other ideas floating around but they are a bit specific for this stage.

Overall I think that this union idea has so much potential, but we need to develop something really tangible in order to inspire people to get involved.

Don't put me in a box: reclaiming my narrative

This post is part of Blogging Against Disablism Day #BADD2015 . Please click the link to read the other posts being published for BADD 2015.

I was going to write about something else but I had a last-minute flash of inspiration for this post. It's something that has been forming as an idea for a while, but I didn't think until today about publishing it for BADD.

Some time ago, I came across this TED talk by Sue Austin, a disabled artist. I was really taken by much of what she said about narrative, and I really related to her experiences.

Society imposes narratives on people all the time. As disabled people, we are no different. We have many narratives imposed on us, many of them negative.

Last year, I went on a short break with my husband to Snowdonia. "Your life must be hell!" exclaimed the B&B owner, on learning that I was chronically ill (I wasn't able to think of a way to not tell him why I was using a wheelchair). I tried to tell him that, no, my life was not hell, thanks very much, but he wasn't really having any of it. He'd made up his mind, and it took 3 days of seeing me not living the life from hell (I was on holiday after all!) for him to unmake it. "You actually seem pretty happy" he said on the last day. Yes, yes I am, and you know that now that you actually know me, I thought.

You see, it isn't that I don't think anyone's life can be hell when they're ill. But mine isn't, and I get just a bit fed up when people assume that my life must be rubbish because I'm disabled, especially when they don't know anything else about me. My life, just like everyone else's, is a mixture of experiences; good, bad, bittersweet and everything in between.

It's not just assumptions about my life either. People make assumptions about my abilities, when they know nothing about them. Last year I attended the AGM of a local group who I'd recently become a member of. They were looking for people for the committee, and I was approached. I made the mistake, yet again, of mentioning that I'm chronically ill. The reaction was, 'I'll leave you alone then.' Noooooooooo! I thought. An opportunity to participate in my local community slipping through my fingers because of an assumption that I can't do anything because I'm ill. Fortunately, I spoke to other people and I've joined the committee anyway.

People make these assumptions because society tells us particular stories about disabled people. Disability narrative is full of pity, tragedy and fear. We are told that we are useless, worthless and a burden on society. Having supportive people in my life and being trained as a social worker to see people's strengths didn't stop me from absorbing this narrative for a while.

But no more. Slowly, I have realised that I don't have to let outside forces tell my story. I shouldn't let them, because that story isn't true, especially now. Yes, I was unhappy when I was first ill. It was a loss, I grieved. But when I came out the other side of that grief, I realised that the rest of the world hadn't travelled with me. I was dismayed, outraged at times, to discover that other people saw me so differently to how I saw myself. It was a source of frustration for a while, until I realised that actually, I didn't have to listen to that story that was being told about me. I could tell my own story. I've been telling it to myself for a while, and it has really empowered me, and helped me to take back my confidence and self worth. Today I'm sharing that story with you.

My name is Melanie. I am a wife, sister, daughter, friend. I write. I create. I cook. I have challenges. I have fun. I have suffered losses. I experience many emotions, but mainly I am happy. I am living with a chronic illness. I adore being outside in the sunshine. I make mistakes. I love eating good food. I am disabled. I enjoy good conversation. I am doing my best.

Look at me.

Photo credit: Lydia Brockless. Photo description: the picture shows woodland with bare trees, blue sky and sunshine. I am sitting in my wheelchair in front of a tree, with my arms flung back and my face towards the sky.

I am thriving.

The Great Cure Debate

As I said in my last post, this started out as a tangent and evolved into it's own thing. It's something I started thinking about because a lot of awareness campaigns base themselves around the idea of the need for a cure, yet many proponents of the social model believe that cure isn't necessary, and that most of the problems that come with being disabled would be solved if disabled people had full equality.

This issue is one that has potential to create huge divisions within the disabled community, but I don't believe it has to be this way. I think it is possible to make room for both, even though the two ideas seem to be in direct conflict with each other. In this post I will be exploring the debate, and I'll also be examining my own thoughts and feelings about the ideas of cure and equality for disabled people.

There are 3 main arguments that are usually used to justify the desire for a cure. Firstly, that disabled people are unhappy with their lives, and would be happier if they were non-disabled. Secondly, that disabled people suffer terribly as a result of their impairment. Thirdly, that disabled people are a drain or burden on society.

The first 2 arguments are commonly cited not just by non disabled people, but by disabled people themselves, although usually only if their impairment is acquired. I have noticed that most people I have come across who were born disabled do not desire a cure. The third argument is most often cited by non-disabled people, and I don't think I would be the first person to say that it is deeply offensive to most of us disabled people.

The arguments against cure are firstly that disabled people are not unhappy and also not necessarily  suffering. Secondly, that any unhappiness or suffering are generally a result of their experience of inequality (e.g. lack of access, workplace discrimination, hate crime). Thirdly, that disabled people are not a drain on society, and equality would give them even more opportunity to contribute (e.g. an end to discrimination would see more disabled people in work, better access would see disabled people able to fully participate in politics, culture and the arts).

As you can probably now see, it is easy to think that it's a case of cure vs equality. That's what it seemed like to me when I first started reading about it, especially since disabled people themselves seem to fall into either one of two camps.

In the first, are those who do not desire a cure. They either see their impairment as a blessing, are able to live happily with it, or don't feel any kind of loss because they were born with their impairment. In the second, are those who desire a cure because they feel they are suffering as a direct result of their impairment, those who see others suffering as a result of the same impairment, and those who feel they should want a cure due to pressure from wider society making them feel as if they are a burden. Those who suffer may hold onto the hope for a cure and this might help them cope emotionally with the impact of their impairment.

Since starting to read disability blogs, I have constantly been challenged by the idea that disability doesn't need to be cured, and that our lives could be vastly improved simply with equality.  As a disabled person whose impairment is caused by illness, the idea of not needing a cure can be a really difficult concept to handle. But oddly, it matches up with my lived experience. I have learnt that I can live a fulfilling life anyway, and it largely doesn't matter that I now live in an impaired body.

Yet, I remain personally conflicted. I am uncomfortable with the last sentence of the above paragraph, because I know many would see me as a traitor to the ME and wider chronic illness community.  But I also feel uncomfortable saying that if a cure became available tomorrow, I'd accept it. Saying I would accept a cure makes me feel like a traitor to the wider disabled community, who are desperate for non-disabled people to understand that a lot of the suffering disabled people experience is as a result of living in a society which does not give us equal rights. Not, as many non-disabled people assume, as a direct result of the impairment we live with. To a certain extent I identify with both sides, and this post is partly a result of my attempt to try and reconcile my personal feelings on the matter.

I am painfully aware that, especially amongst the ME and chronic illness community, there are those who would argue that there is a difference between being sick and disabled, and being well and disabled. Having read a little about lots of different impairments, I would say that in the case of the cure debate, there is little point in making this distinction.

Spinal injury is an example of an impairment that was compared to ME during a Facebook discussion I saw. The person with ME was saying that spinal cord injury (SCI) is not as 'bad' as ME because people with SCI can still do lots of stuff that people with ME can't. But people with SCI can experience debilitating pain, just like people with ME. There are also people with spinal injuries who feel they are suffering and wish to be cured.  Equally, there are probably people living happily and pain-free with an SCI, and there are people like me, who are living well and positively with chronic illness. There are people on both sides of the debate, no matter what their impairment is.

The other thing is that people with SCI face probably as many barriers to participation in society as some people with ME. Whilst someone with SCI can stay up all day without resting, and spend as much time as they want out and about, there are far more places they cannot go than someone like me who is able to get out of her wheelchair and walk a bit, yet cannot go out much more than twice a week. To say that one impairment is worse than another creates needless division, and means that people do not recognise one another's suffering, whether it is caused directly by impairment or as a result of inequality. The reality is that the majority of disabled people experience both social exclusion and problems related directly to their impairment.

Many people in the chronic illness world desire a cure, whereas many disabled people with other impairments (especially those who were born with their impairment), do not. Interestingly though, there are chronically ill people who identify much more with the wider disabled community in terms of recognising and challenging disablism. There are always exception to the rules we create, always people who will inhabit a space outside the box we would like them to fit into. The disability community is diverse, and we all have different ideas about what is good for us. But I think we could unite around the common cause of equality, if we could but see how it would benefit everyone, whether they desire a cure or not.

When it comes to equality, it actually matters very little what impairment a person has, or what they think of their situation. Equality could benefit any disabled person. The main reason that I am able to have a fulfilling life is that I have a few things available to me that other disabled people do not always have. Support and loyalty from family and friends; access to equipment such as my wheelchair; availability of information to help me manage my condition; peer support from the internet; wheelchair access to essential places like my GP surgery and pharmacy; wheelchair access to leisure activities; disability benefits. My point here is that all these things are factors external to my condition. To me, they have essentially solved a large number of the problems caused by my illness. I believe that in a large number of cases, the suffering people experience could be at least partially alleviated by external support, rather than needing a cure. Equality would mean that all disabled people would have access to the things they need to live as fulfilling life as possible with their impairment.

Equality wouldn't just include better wheelchair access or improved attitudes, but access to treatments such as pain relief, operations and appropriate medical advice, that alleviate those aspects of impairments that have a direct impact on quality of life. Believe it or not, many disabled people do not have access to all the medical care and management advice that would maximise their quality of life, and this could be considered disablist.

The stigma that surrounds many conditions means that some people don't seek help at all. They become disabled by not having access to medical advice, treatments, aids and adaptations that could improve their lives. Removing this stigma is about changing attitudes, not finding a cure for the impairment.

Another reason for prioritising equality, in my opinion, is that it is actually more achievable than cure, at least in a practical sense. Even with huge amounts of research, many conditions, not just ME, are still incurable. In this lecture, Michael Oliver gives the example of The Spinal Injuries Association, who, in 1986, claimed that a cure would be possible in just 5 years, if they could raise enough money. Almost 30 years on, there still isn't a cure for spinal injuries. Only very recent research findings have produced 2 examples of the possibilities of curing spinal injury (see here and here).

In contrast, external solutions have been developed far more quickly, in the form of better wheelchairs and even powered exoskeletons. Generally speaking, developments in assistive technology and improvements to equipment, aids and adaptations appear to have moved far more quickly than the search for a cure. They are also more generic (like touch screen or 'smart home' technology), meaning the same piece of equipment could help people with several different impairments. Cures would almost always need to be impairment-specific.

I'm not suggesting that the search for a cure should not continue. Research is not just about cure. Research helps doctors and patients to understand and manage conditions effectively. It can help to ensure correct diagnosis and develop treatments to relieve symptoms. I believe that these things are also crucial for good quality of life, and that not providing them when they exist (or could realistically exist) is a form of disablism.

Equally though, wheelchairs exist, assistive technology exists, pain relief exists; right now. They just need to be made available to all those who could benefit from them. Research being done now may only benefit people in 10, 20 or 30 years' time but I believe passionately that people's lives could be better now.

Medical advances are keeping more disabled people alive. Therefore those same medics and scientists have a responsibility to ensure that the lives they save are as fulfilling and as comfortable as possible.

Finally, I would like to address the argument that cure would negate the need for equality. I believe this line of thinking is profoundly dangerous for humanity. If we were to find cures for impairments, not all cures would come at once. This would leave a smaller and smaller group of disabled people, potentially subject to extra stigma because they cannot be cured at the current time. This would leave them vulnerable to further suffering.

More importantly, prioritising cure sends the message that difference is unacceptable, and compounds the idea that we should all have perfect bodies. It is a fact of life that human beings are diverse. It is a fact of life that no one's body works absolutely perfectly. Everyone has some ailment or other, even if it's just hay fever or an ingrowing toenail.

The other thing is that we wouldn't expect other minority groups to be 'cured' as a 'solution' to their suffering. Just think about it for a second, I'm not going to say any more!

In conclusion, my view is that we shouldn't focus on cure or equality as separate and conflicting aims. This creates a space for working towards all the things that will make life better for all disabled people; removing stigma and prejudice; equal access to public spaces, education, work and healthcare; providing equipment and adaptations that maximise quality of life; as well as pushing for medical research that may produce a cure, but at the very least should result in better medical advice and treatment.

Further reading:

http://thatcrazycrippledchick.blogspot.co.uk/2013/10/screw-cure-i-want-equality-letter-to.html

http://wordsiwheelby.com/2013/08/complexities-of-cures/

http://wordsiwheelby.com/2013/10/curing-disability-should-not-outweigh-equality/ The comments on this article make some good points too.

ME Awareness Month: Less Awareness, More Acceptance

12th May was ME Awareness Day, part of ME Awareness Month. 12th May is also an awareness day for Fibromyalgia (FM) and Multiple Chemical Sensitivities (MCS). If you would like to know more, click the link above or see one of my previous posts here.

I was intending to publish this on ME Awareness Day, but I ended up going off on a tangent which I've now turned into a whole other post (coming soon), meaning that I ran out of time.

When I first became ill with ME, I thought the idea of an awareness day was great. There is a lot of misunderstanding about ME (even among health professionals), and a lot of people don't know how serious it can be. However, in the last year or so my personal outlook has changed significantly, and I've also read a couple of articles (links later on) that have challenged me. This combination has lead to me question whether I really feel comfortable with awareness raising. I'd like to suggest that acceptance would be a better alternative, and one that I could (and do) wholeheartedly support.

One of the problems with awareness-raising is that it aims to induce pity in those on the receiving end. Diary of a Goldfish eloquently points out that this perpetuates personal tragedy model of disability. This in turn reinforces the idea that quality of life for people living with impairments must be terrible.

Of course, some disabled people consider that their lives are terrible as a direct result of their impairment (as opposed to not having the same rights and opportunities as non-disabled people). But I'm not one of them, so awareness campaigns tend to make me very uncomfortable because they do not reflect the reality of my life. Most of the time I do not suffer and I have a good quality of life. I consider this to be a result of the tools and resources I have available to me which enable me to manage my condition well and overcome a lot of the difficulties it causes.

Other problems with awareness-raising include pitting different impairments against each other and the fact that not everyone can be expected to be aware of every illness and medical condition. This is especially true when awareness days, weeks and months all seem to happen at the same time. Via social media, I have discovered that there is an awareness day for lupus this month, and it is also Lyme Disease Awareness Month. A quick google turned up a whole load more.

I also wonder about the effectiveness of awareness-raising in addressing the problems that people with various impairments face. Google tells me that awareness is simply 'knowledge or perception of a situation or fact'. Awareness simply means people know of something and maybe know about the problems it causes. It doesn't mean that they will do anything about it. I get the impression that most people who raise awareness want something to be done. Whilst it might generate much-needed charitable donations (not a bad thing in and of itself), awareness won't necessarily change people's attitudes.

It is really, really hard for people to understand something like ME. Even the nicest, most empathetic and accepting people I know, do not fully understand what it's like for me. But I am ok with that. I am ok with that because they accept me just as I am. They accept my experience as I tell it, they accept my limitations and my access needs without question.

Acceptance would be a huge attitude shift. It would not require the general public to understand complex medical conditions. It would benefit all disabled people, no matter what they think about their quality of life and no matter what their impairment is. It would mean that everyone would accept their (our) reality at face value, whatever it happens to be.

Although I would prefer acceptance rather than awareness, I would like to state that I have no issue whatsoever with the fundraising efforts that are part of ME Awareness. Fundraising is important for many, many conditions, and it isn't just about research. Charities such as the ME Association and Action for ME also provide emotional support and advocacy, which in my opinion, are just as important.

EDIT: removed reference to Autism Awareness Day because it isn't in May, it's in April.

BADD 2014: Are Social Workers Part of the Problem?

This post is part of Blogging Against Disablism Day (BADD). Please click the link to read the other posts being published for BADD 2014. The scope of social work varies around the world; please note that I am writing from a UK perspective.

When I was a first year social work student, I studied a module entitled 'Values, Ethics and Empowering Practice'. For me, this was one of the most fascinating and engaging topics of the whole course. It opened my eyes to things I had never considered, gave words to concepts I recognised but had previously not found the words to express, and heavily influenced my personal attitudes.

The module also made me uncomfortable at times. During the course I realised my white, middle class privilege for the first time, and felt immediately guilty for it. I realised that racism isn't dead (yes, I was quite naïve aged 19). Lastly, I was confronted with the idea that sometimes, social workers are part of the problem. Sometimes, they contribute to the oppression of minority groups, instead of working against it.

Looking back at my old lecture notes, the first slide of the lecture on disablism (given by Professor Lena Dominelli) clearly states that social workers have contributed to the oppression of disabled people. I also noted how disillusioned with social workers Michael Oliver (a leading disabled academic) seemed in his book The Politics of Disablement (1990). This has stuck in my mind ever since. I felt intense discomfort at the idea that I would be seen as a problem by disabled people. I was being taught that I was supposed to be part of the solution.

This discomfort only continued when I became disabled myself and started reading disability blogs, some of which have contained stories of negative experiences of social workers and social services.  What was I supposed to think now? I felt like a fraud identifying as disabled, when really I was on what appeared to be an opposing 'side' (despite the fact that I was no longer working at this point). I knew that those experiences of other disabled people weren't right, and I longed for them to have experience of good social work practice. In an ideal world, social workers and disabled people should be on the same 'side'.

I had hoped to write a post exploring in detail how and why social workers contribute to disablism, however it became clear that if I were to fully explore each idea it would end up being a series of posts (which I don't have the spoons to write) rather than one. So I have done my best to summarise everything instead.

Let's start with how things should be. Here are some things I was taught in university that I feel are relevant to social work with disabled people. These are from my memory of what was said at university, unless otherwise indicated.

Self-determination This is the idea that the person, not the social worker, should be making decisions and choices about the person's life (Biesteck 1961)

Empowerment The idea that the social worker's interaction with the person should result in the person having more power over their life.

The social model of disability The idea, developed by disabled people, that people with impairments are disabled by a society that is not structured to be fully inclusive of them.

Seeing the person in context During training, we were always told that we must view people we worked with within their social context. When working with disabled people, this means acknowledging the oppression they face in wider society.

Addressing structural inequalities Lena Dominelli's view was that the role of the social worker was not just to assist people on an individual level, but also to challenge the structural inequalities that impact on the people social workers work with. She felt that social work could not be truly effective without this latter element.

Holistic assessment A social workers' assessment should consider all aspects of a person's life, not just tasks of daily living such as eating, washing and dressing. An assessment should also include discussion of working life, leisure activities and hobbies, religious or spiritual practice, family life, social life and relationships. To a certain extent, this is represented in current social care guidance.

The person is the expert in their situation.

Needs-led assessment Current social care guidance states that assessments should be based on what the person needs rather than the resources available.

Partnership approach The social work relationship should resemble a partnership in which the social worker and person work together to overcome the problems and barriers the person faces (French and Swain, 2002).

Anti-oppressive/anti-discriminatory practice Being aware of the oppression and discrimination that people face, and ensuring that social workers' own actions do not condone or contribute to this experience (Thompson, 2002).

It is important to note here that the values of social work haven't evolved in a vacuum. They are a response to the campaigning of the marginalised groups with which social workers are working.

Whilst in the 1950s, social work was heavily influenced by psychoanalysis, the social movements of the 1960s and beyond have gradually pushed social work towards the ideals of social justice and the idea that social workers should be enabling and empowering people, rather than being an expert who is prescribing solutions to people's problems. Moreover, social workers should be actively addressing their own contribution to the oppression of marginalised groups.

So where does it all go wrong? I'm going to suggest that there are several ways in which good social work practice is compromised:

Lack of resources This has always been a problem, and in the recent economic and political climate has only got worse. Social workers are not always able to put in place what the person needs (and/or wants) because the funding just isn't there. Additionally, social workers themselves are viewed as a resource. Social work time costs money, so there is pressure to manage a higher caseload (in order to employ fewer social workers), which means less time spent with each person. The net result of this is that social workers are not able to really get to know people, nor do they have sufficient time to reflect on their practice, meaning they will be more likely to inadvertently contribute to oppression, and less likely to assist the person to achieve their aspirations.

The eternal tension between what social work wants to be and the role that the government have prescribed I have set out above the ideals that social work as a profession aspires to. However, this is often at odds with the ideology of central government, whose policies social workers have to implement and who make the laws that define the social work role.

The influence of wider society on the social worker Society at large still subscribes to the medical model and the personal tragedy model. If social workers are not careful, they can internalise these ideas and this can influence their practice.

The watering down of social work values Lena Dominelli in particular has picked up on the issue of empowerment basically not really being empowerment at all. She uses the example of complaints procedures (against individual social workers) as appearing to empower individuals but actually making little difference because decisions about the way services are designed and delivered are made by management (Dominelli, 2000).

Lack of professional voice If social workers are to address structural inequalities, they need to speak out against these with a collective voice. Unfortunately, social workers have little respect in wider society and their professional opinions are rarely valued by those in power.

Allowing knowledge of the available resources to influence their assessment.

Imbalance of power Oliver (1990) states that social workers, as professionals, hold knowledge and information about what is available. This means they hold power over a person who does not know these things. They also have a certain degree of power in terms of gatekeeping, as they are the ones who determine what the person needs.  Oliver (1990) also points out that professionals rely on disabled people in order to have a job role, so have a vested interest in keeping people dependent on services.

Conflicting roles The role of gatekeeper is in direct conflict with the idea of social workers empowering individuals.

Production line-type processes and tick boxes When assessment structures are reduced to ticking boxes and following a process, social workers may fail to engage fully with the person's aspirations, instead concentrating on meeting basic needs.

As you can probably see, a lot of the causes of disablism in social work are wider issues that are often beyond the control of individual social workers. However, social workers have a responsibility to make the changes that are within their control.

So, how can we work towards better social work with and for disabled people?

My suggestions to social workers are :

• Defend your professional values and be vigilant as to where and how they can be compromised. Do your best to stay true to what you were taught at university, where social workers themselves define what social work should be.
• Be aware of and challenge disablism wherever possible, including within the organisation for whom you work.

• Remember that the interaction with the person is the one thing you truly do have control over. Respect and acknowledge the person's aspirations and oppression, even if you can't see a way to do anything about them. If you are unable to provide something, explain this politely, respectfully and giving the reasons. This might seem obvious, but when I mentioned bad experiences that disabled people had, insensitive comments about lack of resources and disabled people's aspirations for their lives, was one of the things I was referring to.

• Be willing to learn from disabled people.
• Campaign alongside disabled people.

My suggestions to disabled people:

• Don't be afraid to challenge your social worker. Please do it respectfully, but don't remain silent if something isn't right.
• Recognise that there are some things which are outside of your social worker's control.
• Part of internalising society's attitudes towards you is accepting the idea that other people know what is best for you; remember that you are the expert in your own situation.

• Keep coming up with your own solutions and suggest them to your social worker.

• See your social worker as a resource. Ask questions, obtain information. Being an active participant in the interaction makes it implicit that you expect a partnership approach.
• Keep campaigning for your right to better social care.

I hope this will give social workers an opportunity to reflect on their own practice. I also hope that it gives disabled people some insight into what a good social worker looks like. I believe that social workers and disabled people can work together to address the structural inequalities that affect both disabled people and the ability of social workers to effectively empower them.

References

Biestek, F (1961) The Casework Relationship London: Allen and Unwin

Dominelli, L (2000) Empowerment: Help or Hindrance in Professional Relationships in Stepney, P and Ford, D (eds)  Social Work Models, Methods and Theories. Lyme Regis: Russell House Publishing

French, S and Swain, J (2002) The Perspective of the Disabled People's Movement in Davies, M (2002) The Blackwell Companion to Social Work Oxford: Blackwell Publishing

Thompson, N (2002) Anti-Discriminatory Practice in Davies, M (2002) The Blackwell Companion to Social Work Oxford: Blackwell Publishing

International Wheelchair Day 2014: What a Wheelchair Means to Me

Today is International Wheelchair Day. It is a day to celebrate the wonderful invention that is the wheelchair, and the freedom it brings to so many people. It is also a day to think of those whose lives could be enhanced by the provision of a wheelchair, or a better wheelchair, but who, for various reasons, do not currently have access to one.

Various events are going on around the world, so take a look at the website above to see if there is something happening near you.

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Early on in my illness, when I could walk further than I can now, I began to think about wheelchairs. Even though I could still walk 100-200m, my restricted range of mobility was beginning to restrict what I could do. I badly wanted to go to Taize and Greenbelt in summer 2011, and I realised that if I had a wheelchair, I could.

I only began to doubt myself when I thought about what other people might think. Would they think I was giving up? Would it make life awkward and difficult? Would strangers think I was faking when I got out and walked completely normally? Would people treat me differently? I'd already heard about 'Does s/he take sugar?' when I was training to be a social worker.

I looked at a lot of wheelchairs online. I began to consider my options for getting one just so I could do my 2 trips away over the summer. It turned out that the easiest and cheapest way would be to borrow one from the Red Cross (you can borrow one for free, but they like a donation).  I really didn’t like the look of the horrible red and grey chairs on their website, but they lent me a metallic purple one with a really comfy backrest. I thought only expensive wheelchairs could look cool. One person even complimented me on the wheelchair during the trip, and was really surprised when I told her it was on loan from the Red Cross.

My husband and I picked up the chair a couple of days before the trip, so when it turned out to be lovely evening, he took me for a walk down the road. It felt better than I had ever imagined. The sensation of being pushed in a wheelchair took some getting used to, but I felt free. Free and happy and so grateful just to be basking in the evening sun.

The wheelchair I borrowed for Greenbelt wasn't as nice, but it still meant I could go and enjoy the festival. A month later, life was getting so awkward without a wheelchair, I started hiring one. Turns out, when you just get by without something, you don't actually know how much you can benefit from it until you actually have it. This has turned out to be true with several other things I now have to help make life easier living with ME. I noticed it with people I worked with too, when I was a social worker.

The only problem with the hire chair was, I hated it. With a passion. It was grey and uncomfortable. I still got so exhausted from sitting in it and I was embarrassed to be seen in it. The worst thing was that the seat sling didn't attach to the backrest so I was left with my bottom peeping out between the two. Not dignified in the slightest. Every time I looked at the chair folded up in the corner at home, it seemed to remind me of everything I couldn't do. On top of that, it was giving my husband backache because the push handles were too low for him.

So, during one of my many trips to my GP at the time, I asked her if she would refer me to wheelchair services, to see if I could get a chair on the NHS. She agreed, but I didn’t meet the criteria. There is a bit of a postcode lottery when it comes to who is eligible for a wheelchair on the NHS, and where I lived at the time, they considered that I wouldn't use a wheelchair often enough for them to provide one. Instead, they provided me with a list of local retailers where I could buy one.

I struggled on with the hire chair whilst unsuccessfully chasing second hand chairs on eBay. Money was tight - back then I thought it pointless to claim DLA as I might get better - and I felt I couldn't justify buying a new chair for the same reason.

Eventually, my husband talked me into buying a new chair from a discount site. Most of the second hand chairs on eBay were actually going for around the same price. As soon as my new wheelchair was delivered, my joy returned. It was blue (my favourite colour), it was comfy, it was dignified. The push handles were a better height for my husband. We went out in the sunshine for a picnic, and people-watched in the park. I sat proudly in my new chair, happy to be out and about enjoying myself.

But it didn't last. As time went on, we realised I was probably going to need a wheelchair for a while, and the new one was wearing out already. All the joints were loose and had to be tightened up all the time. The cushion had lost it's supportiveness. I was becoming unhappy again. I wanted more freedom.

I was beginning to hate being pushed all the time. I couldn't look at the things I wanted to look at in shops. I couldn't control my own speed. I got travel sick when my husband changed direction without warning. People saw me as dependant and wanted to do everything for me. It was difficult for me to change position when stationary.

I began, literally, to dream about pushing myself around. In my dreams it was easy, so easy I was even flying in my wheelchair. I would be effortlessly speeding through my dreams, and then I'd wake up. My husband and I started talking about a long term solution. If I was going to get myself around, I'd need power assistance. I looked at various options, but what I really wanted were e-motion wheels.

I'd seen someone using them at Greenbelt 2011, and promptly Googled them when I got home. They seemed perfect. But they were an expensive dream, especially since to make the most of them, I'd need a new wheelchair too.

But in November 2012, I received a life-changing letter. I was about to inherit enough money to buy the e-motions and a new wheelchair. I could scarcely contain my excitement. Even Christmas paled into insignificance next to my literal dream-come-true. I could barely think of anything else. I printed off the leaflet and showed everyone I knew.

In January 2013, I went to try out the e-motions at an approved mobility shop. They got me to try out lightweight chairs first, to see if that would be enough to enable me to get around on my own. It was better, but not good enough. I tired quickly just pushing round the shop. Then I got into the chair with the e-motions on, and I just didn't stop. I went backwards and forwards for ages, until the guy asked if I'd like to take them outside. Pushing myself along the row of shops, it was the furthest I'd been independently in over a year. I was sold.

Back inside the shop, we discussed wheelchairs for hours, and I chose a chair, associated options and a cushion. I also discovered why my other chair had worn out so quickly. Who knew I was wasn't an 'occasional' wheelchair user? The NHS certainly seemed to think I was!

I've had my current wheelchair for just over a year now, and it has changed my life. I am happy with the way it looks, with the way I look in it, with how it feels and how it fits and supports my body. It minimises my physical fatigue in a way that no other wheelchair I've tried ever did. It has been an enormous boost to my confidence and it has opened up my world. I can do everything I wanted and more. I've never been one for speed, but now I can 'run'. I adored dancing, and thought I never would again (unless I recovered), but guess what? I can.

And that's the thing really. A lot of people think a wheelchair means restriction. I understand why that is. If you put a non-disabled person in a wheelchair, they are more restricted than if they weren't in the chair. To those who can walk as much as they want and wherever they choose, a wheelchair is restricting.

But it isn't to me.  Today, I hope Eileen can hear me say thank you for her generous gift. It isn't just a wheelchair. It is freedom, confidence, dignity, independence and glorious possibility.

 Picture shows me, a white female, sitting in my wheelchair. The wheelchair faces a view out to sea, I am looking over my shoulder towards the camera.

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Want to celebrate International Wheelchair Day by making someone's wheelchair dreams come true? You could donate to one of the following charities, or find out if there's one local to you.

Whizz Kidz

Motivation

Wheelchair Foundation

 Red Cross

You could also sign this petition which calls for better wheelchair provision from the NHS.

ME/CFS: Places you can find out about my condition

ME/CFS, the condition I have, is one of the things that I am not going to write about very much. This is because there are numerous places you can go to find out about it and also numerous people blogging about living with it. Although everyone is affected slightly differently, I do not think I can add much original material to the internet regarding ME specifically.

However, I know that there might be some people wondering what it is exactly that I have, so I will provide you here with a whole load of links that I have gathered over the last couple of years. You can pick and choose which ones you click on, depending on how much you want to know and how much time you have!

ME charities

The following are UK charities who fund support for people with ME, research into the condition or a combination of the two. Their websites give basic facts about ME, such as what the symptoms are and how many people are estimated to be affected. On their news pages you can find out about the latest research findings.

The ME Association
Action for ME
Invest in ME

YouTube

There are lots of videos on YouTube about ME/CFS. Most of them are depressing, a lot of them are just words with sad music. Although I can understand why people with ME want others to understand how truly awful it can be, I find it difficult to see how such videos can really change people's minds about the matter. Feel free to correct me if you have seen one of these and been moved by it.

However, is isn't all bad. The two links below are the best videos about ME that I have come across, although there may be others. They are each made by a teenager with the condition, and they provide an excellent explanation of the condition and surrounding issues that people with ME may experience.

ME Awareness by Poppy

Ways to describe and explain ME/CFS

There are also various films that people are trying to make about ME (including interviews with researchers etc), but a lot of them are relying on crowd sourcing the funds, so only trailers are available at the moment.

Again, I am somewhat skeptical of what this awareness-raising will actually achieve. But on the other hand, I do believe that more research and better recognition is desperately needed. ME affects more people than, for example, MS, yet more research has been done on MS and therefore more is known about it.

Voices from the Shadows is a UK film that was released in 2011. It focusses particularly on those with very severe ME, who are often bedbound (I do not fall into this category).

The Blue Ribbon is a film in production, currently looking for funds to enable completion. It is based in the US and should feature interviews with patients, family of patients and researchers.

Canary in a Coal Mine is a very new project based in the US. It has attracted a storm of attention online and looks very promising. The woman behind it has ME herself and is very well-read on the subject. She is interviewed here on the TED blog.

ME blogs

On the right are links to other blogs I read. There is a small list of blogs about ME, but it is worth noting that some of the  people in my other blog lists also have ME. It isn't the main focus of their blogs, but there are places where they mention it.

Danni in particular has written a great piece here. Although it is long, it sums up pretty much all the important things about ME, in a way that is pretty easy to understand.

If you would like a US perspective, this is a good place to start, and there are some other US ME blogs and websites linked from there on the right hand side of the page.

Current Issues

Currently there are 2 major issues causing uproar within the ME community.

In the US, the HHS have just signed a contract with the IOM to produce a new case definition for ME/CFS. The problem with this is that it is likely that experts in the condition will not be part of the process, it is costing a lot of money and in any case there is a definition that was published in a journal several years ago that the scientific community view as perfectly adequate (The Canadian Clinical Case Definition). This definition has not yet been adopted as diagnostic critieria by any country although it has been used many times for research purposes. The view of patients and many international experts is that the Canadian definition should be adopted by the US health authorities and the money instead spent on further research.

In the UK, the National Institute for Clinical Excellence, who produce guidelines for treatment of many diseases and conditions, recently announced that they would be placing certain conditions, including ME,
on a static list, not to be reviewed often. The view of patients and the MEA is that the current NICE guidelines fall short, and in the light of recent research (and the Canadian definition which NICE ignored first time round), desperately need updating. Originally, it was anticipated that the guideline would be updated this year.

In-depth Information

If you are really keen to know lots about ME, these links are to websites which provide more in-depth information about research and the politics surrounding the illness. They are both US-based but with an international emphasis.

Phoenix Rising

Cort Johnson

So there you have it. ME in not-quite-a-nutshell. Unfortunately being such a complex, misunderstood illness surrounded by ridiculous politics, it will not currently, if ever, fit in a nutshell.