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.