United we Stand, Divided we fall – Part 1.

Anyone who has read any of my blog before will have worked out that I do rather a lot of thinking and analysing of how our actions and behaviour etc. can impact on others.  I also worry rather a lot about whether what I say or do might be misconstrued by others or whether I am saying something that might offend someone else.

Having said that, I also have some very strong values and opinions particularly around the issues of rights, equality, respect and choice and, because of my personal background inevitably the particular issues about which I have most to say are about disability rights and equality etc.

Sometimes it is very difficult to bring this reluctance to offend and my desire to be accepted and seek approval with my equal desire to challenge thinking.  However I have also come to learn that if I get this balance right it can be very powerful.  When I worked for a large organisation I was often asked to organise meetings which involved a wide range of people with differing views and on several occasions it was made clear to me that I had been asked to organise the meeting because I would be able to engage people from a variety of different view points.  You will have to judge for yourselves whether you think this is true.

I have been thinking about this a lot over the last few weeks in relation to two specific issues that I have given more and more thought to over the last couple of months related to the various work and awareness / equality / acceptance campaigning I have been engaged with on a personal level.  Both issues are slightly different although they both have a common theme of  how much more powerful we would all be if we could work with the things that unite us rather than focussing on some of the detailed issues.

The two issues that I am thinking a lot about at the moment are:

1.  Access to transport for disabled people and the way the debate is sometimes framed in terms of wheelchairs vs push chairs.

and

2.  The desire to promote disability equality and rights and a tendency I have observed sometimes where it almost seems like one group of disabled people are competing with another group.

I’m sure there are many other debates, issues and causes where there are a variety of similar groups all trying to achieve similar ends, but coming from different specific backgrounds.  It is all too easy to get very focused on the issue which relates most to you.  This is natural because we all talk and act best based on personal experience.

I guess my tendency is to try sometimes to take a little step back and to try to see where some of the common issues are for a variety of groups because I believe that if several groups are able to find a common thread it gives them all a much wider base from which to argue for change.

I wanted really to talk a little about something that really underpins a lot of my thinking.  That is ‘the Social Model of Disability’.  This might sound like scary academic language to many people and it did originate from academic studies, but in very simple terms there are 2 general ways that people tend to think about disabled people and disability.

The first is ‘the medical model’ which is used by doctors and health professionals and tends to think in terms of a diagnosis, the name of a syndrome or condition and there is a lot of focus on ‘treatment’, ‘cure’ and services that focus on the medical model tend to think in terms of labeling and categorising people in terms of diagnoses, treatment and medical symptoms.  It is often linked with the idea of wanting to treat people, to make them ‘better’, which implies that there is something ‘wrong’ with them.

The Social model, assumes a rather different approach.  It accepts that people have ‘impairments’, health conditions etc. that may need medical treatment and may cause pain etc.  But it agues that people are not so much ‘disabled’ by their diagnosis / condition but by the barriers and attitudes which exist within society.

I am not an academic and this difference is much better explained quite simply in this video by Disability Lib or this article from ‘The Red Cross’ which was recommended to me by a colleague on twitter.

It is the social model that underpins my views and my desire to campaign for better rights and equality for all disabled people regardless of the nature of their specific condition.  In my own experience the issues I can most identify with are visual impairment because it affects me and the rest of my family and autistic spectrum conditions, because I advocate for my Son who is also on the autistic spectrum.  Although both of these ‘conditions’ are very different in terms of the medical diagnosis,  and ‘treatment’ etc.  There are many common issues that make it difficult for me to do something because I’m visually impaired and for my Son because of his asperger’s.  There are also many common issues we face in our wish to participate in society and to be able to reach our potential and have to make choices about the way we live.

essentially, for both of us, many of the things that would make life a lot easier are things that could be changed within the environment or if other people were a little bit more aware of how the decisions they make might make it easier or harder to for us to contribute, join in, make a choice etc.

So just to go back to the 2 issues that have been bugging me lately:

Accessible transport for disabled people and framing the debate in terms of ‘Wheelchairs vs Push chairs’ – I really don’t like it when I hear people talk in these terms.  I will write a more detailed post about this, but, in basic terms, my view is that we all want better public transport that is more efficient and useable for all (OK, may be not all – I’m sure some people don’t care and are quite happy to clog up the roads with more and more cars). Mums with buggies need space, wheelchair users need space, people pushing buggies benefit from ramps, and so do wheelchair users.  In my opinion the issue should not be about who has more right than who, it should be about where are the common issues and how can wheelchair users and disability campaigners work together with parents groups to achieve a more useable system for all? and how can we build a community which respects everyone?

My second little niggle is about groups of disabled people campaigning for specific issues.  This, in itself I can understand, we all work best and are driven most by personal experience.  However, I sometimes observe that, by doing this, people almost end up competing in terms of which groups are more disadvantaged than others.  In my humble opinion, and by thinking in terms of the social model, all disabled people are disadvantaged if there are barriers and attitudes which exist within society that make it difficult for us and our children to participate.  Depending on a person’s particular needs (needs rather than diagnosis) all of these barriers will be slightly different for each individual because we are all different.  Most of us disability and parent campaigners spend endless hours trying to explain that we are all different!  and we want service providers, teachers and colleagues to accept us for who we are. We are united in that we need organisations and our friends, neighbours, teachers, colleagues etc to think about how their actions might impact on others rather than assuming we are all the same.

I know for a lot of people there is some belief that it is ‘easier’ for some disabled people because they have a ‘visible impairment’ eg. they use a wheelchair or have a guide dog.  OK, these people may not have to provide an initial explanation, but they still face many barriers and some barriers may well be more pronounced because it is obvious to others what their disadvantages might be.  Yes it can be frustrating for many reasons to ‘have a condition’ that is not ‘visible’ immediately to others because you might have to explain your needs, but please let’s try and work together as disabled people and parents of disabled children to try to campaign for more understanding in general and try to focus on where the common issues are, such as the need for others to respond to individuals and to ask people what they need rather than by making blanket assumptions.   For example by making statements such as ‘it is easier for people in wheelchairs to be accepted than those on the autism spectrum’ is, in my opinion, not helping anyone.  We are all disadvantaged, the specific nature may be different, but lets look at the common issues and work together.  There are many people who have a range of impairments and health conditions that are not visible and many who’s ‘conditions’ are all too visible, but surely what we all want is to be respected for who we are.  It is not easier for one group than another, it is just a difference of detail.

It is by joining forces and finding common ground that is likely to help us build joint understanding and harness a much broader level of support to achieve a wider level of understanding, both of the needs of other disabled people but also in working together we have a much greater voice within society.  Again I will explore some of this in more detail at some point because I am aware it is not always so simple, particularly in the world of bidding for funds, but as ‘grass-roots’ disabled and parent campaigners I believe there is a huge potential to find common ground and work together to have a very powerful voice.

So, please let me know.  Do you think there is an opportunity we could use here to build some common goals or am I living in ‘cloud cuckoo land?

Also if there is anyone out there that knows of a really simple article about the ‘Social Model’ that has been written by a disabled person or disabled people’s organisation please let me know.  The article linked to this is very clear, but it did concern me that it hasn’t been written by a disabled people’s organisation.

Thanks again for reading.  If this does ring any bells with you it would be great if you could share this post as I really do believe that this is something that really help a lot of current campaigns.  I’d also love to know if you’ve read this and if it’s made you stop and think any differently about things.

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About Violets Diary

Visually impaired Mum, with VI hubby, 2 disabled children. Disability campaigner, novice blogger and tweeter. Trying to put the world to rights and share our journey and positive stories. https://violetsdiary.wordpress.com
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10 Responses to United we Stand, Divided we fall – Part 1.

  1. Deb says:

    Interesting blog Violet. In the early days after my son’s diagnosis I went to a local group for disabled children and it was there that I came across some animosity between different disabilities. Some people seemed to be in a race as to who was worse affected. There was also come tension between the autism community and those with physical disabilities. Because those with ASD had been overlooked, some officials were trying to advertise support for this group of people which till then had been non existent. Unfortunately other people unaffected by ASD took offence. I felt very uncomfortable with it all to be honest and left.

    However, you may want to read this post of mine because it shows how different disabilities can be united – http://www.aspieinthefamily.com/2011/06/different-disabilities-shared-experiences/ – if its not appropriate to link it in a comment, please remove, I don’t mind.

    Deb x

    • Thanks Deb, I will check out your link and I’m quite happy to have links in comments. This is about sharing and learning, not a competition. I face the sorts of issues you describe daily in my work and it is a real struggle 2 unite people over common issues. It is something I find really frustrating when I know there is so much we could do and so much people have in common.

  2. solodialogue says:

    This is a beautiful post about the power of unity to effect changes. There are many ways to look over the fence – we don’t have to be bitter thinking the grass is greener somewhere else. There is no reason not to work together. I have seen bitterness in the ASD community between parents of ASD children and ASD adults and even amongst parents about whether or not autism should be viewed as the “enemy” or not that fractures and divides and further fractures and divides! It is a shame not to pull together, see the common ground and unite for the numbers will empower us to get what we all need.

    • Yes, me too, and I recognise that everyone has a slightly different view and perspective, but I think there are probably so many things that form common ground and it would be nice if we could use that to try to make a difference. There are so many people essentially wanting the same basic things that if we all got together I’m sure we would have more power. 🙂

  3. Beth Morris says:

    I couldnt agree more violet – although i wonder if in the 21st century there is a need to define our own “model” im aware of tensions escpeially from some quarters towards people who are disabled by thier illness. so for me personally id like to move to a place where both the medical and social is incorporated into a person centred way of looking at the world.. for some no matter how far we move towards equality their illness or impairment will limit them and for others it wont.

    We have a way to go, I like the work done by phillip Connollly recently about changing the narrative, moving away from seeing people as victims, or scroungers whilst recognising for some people its a longer road..too often we are asked to adapt and change yet its never about the money (thanks fonzey) its about attitude – working to changine rigid structures and thinking of services, employers and ourselves will go a long way..i look forward to working with you

    • I’m not familiar with all the research, but I think what you describe would also fit with the way many people on the autistic spectrum are looking to define autism. They want to be accepted for who they are, they will never be able to ‘fit’ what non-autistic people see as ‘normal’ and they accept that this may limit some of things they are able to do and ways they are able to contribute. there are also very similar issues for people with learning difficulties. I’m not an academic, but I do sit back and observe and it does seem to me that we really need to look at focusing on people, whoever they are and their own definitions of their needs. and if we saw it in this way many people from different backgrounds and perspectives could be brought together. Thanks for commenting

  4. 1funmum says:

    Applause. Standing ovation. You have written one amazing blog post today violet! It is hard in so many ways to get people to see we are all in it together. I was floored by someone’s thoughtless attitude about ASD yesterday. I felt the sting of the bias of wheelchair vs ASD and was shocked as he said some very cruel things to me. But my faith was renewed today by others who have shown understanding and compassion for all. We all are just trying to get by. We all are just trying our best for a better quality of life. What helps if we would do what your doing which is campaign for the expansion of service for all. We all need to feel valid and like contributors to society. We all need to see our Doctors and we all could use a helping hand. You are one amazing lady cause you really can organize groups to stand together. Or at least I believe you can. Cheers for one great post!

    • Thanks, I’m not sure I’m that good, I try and i really want to highlight the problems of people operating in isolation. I know there are issues about why it happens and i will write about that at some point, but i think we could all achieve so much by looking for common ground. Thanks again for reading and commenting and for sharing xx

  5. Catherine says:

    I wholeheartedly agree with you and you’ve said it very well. We all – me included – focus on our own particular struggles. For me it’s that invisible, fluctuating illness is not recognised as a disability in terms of the Work Capability Assessment for ESA. And the government has hijacked the Social Model of Disability to argue that almost no-one is genuinely impaired and therefore everyone can work and therefore they can cut our benefits. No-one has tried harder to work than me and no amount of adjustment in the workplace or change of other people’s attitudes can alter the fact that I’m just too sick to work a lot of the time. So the Social Model. liberating though it is for many, doesn’t work for me.

    But like you, I know that staying within my little corner is not the way forward. I’m eager to learn more about other kinds of disability, and the issues they involve, and help build a stronger platform for awareness and change. And it’s only by understanding each other’s struggles that we can be strong together.

    • Thanks, I know there is a lot we need to move on now from the social model which is about recognising and accepting limitations, but not seeing them as ‘less’. thanks for commenting.

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