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.