Notes On A Conversation
Tuesday, 19 April 2016 10:17
Nobody (with the possible exception of one of my neighbours) can talk forever. All conversations must at some point end. Thus it is with The Model Conversation, CAIL’s oral history project, which has been talking to people with disabilities or long term health conditions for the last ten months, asking how the move from the Medical Model of Disability to the Social Model of Disability has impacted upon their lives.
So what have we learnt?
Firstly I have been continuously surprised by people’s willingness to share their stories with me. Oral History is a meticulous process, often asking people to reveal things about themselves that they have not articulated before, and sometimes to speak of things that they would rather never experienced and have no desire to retell. Almost universally the people I have interviewed have been extremely open and honest about their experiences, good or bad, challenging or embarrassing, scary or heartening.
It hasn’t all been sadness and difficulty though. Lots of humour, lots of realism, lots of fortitude and kindness – received and given – feature heavily in all the life stories I have heard. Especially the humour for all of our respondents had been in situations where to laugh was truly the only way to rationalise and deal with what was happening – one interviewee was punched in the face by a member of the clergy due to a laughable misunderstanding; another had their day brightened by a chance encounter with a (sadly now-disgraced) Seventies pop star; yet another was once responsible for accidentally instigating a State of Emergency in the Indian region of Uttar Pradesh.
A continual theme was a dislike of so-called inspiration porn – the idea that because you may have a disability you are an inspiration to people just for doing something relatively normal. This attitude was a source of frustration and anger to more than a few of our subjects. As one of my respondents put it after a friend of his had congratulated him on his beverage-making abilities: “I am not a hero simply for making a cup of tea.”
But the project is not over yet. There are a handful of interviews still to conduct, we are still in the process of shooting the accompanying documentary, and will soon begin trialling the educational material we have created for Key Stage 3 of the National Curriculum.
It’s been an exciting time, and it isn’t over yet!
The Social Conversation by Judith Margolis
Thursday, 14 April 2016 12:56
When I first learned about the Social Model of Disability, it made me very angry, why hadn’t someone told me about this before. It changed my whole outlook on life, and definitely changed the way I expected to be treated.
Supporters of the ‘Social Model’ believe that it is our surroundings that ‘disable’ us rather than the conditions of our body. I struggle with the term ‘disabled’ just because I use an electric wheelchair, doesn’t mean I am any less of value than anyone else. I’m still the same optimistic person who likes a challenge and enjoys helping people reach their full potential. The list of everyday things that ‘disable’ me are endless, for example: I have to call up 24 hours in advance if I want to use our local Stagecoach busses and my local train station has no lifts to the platforms. I can’t use London Underground and taxies are a nightmare. I can’t get into most pubs, hotels, shops and restaurants where I live and I can’t visit people in their homes and why can’t they put mirrors in accessible toilets????
For so long after I had to retire from work I felt helpless, vulnerable and yes disabled. Looking back now, I’m just angry. My last job was as a part time university lecturer, and I absolutely loved it. Helping students understand the world of business was totally engaging and they invariably taught me more than I ever did them. Unfortunately, I have a degenerative neurological condition called Ataxia; this meant that I was exhausted all the time. Marking students work definitely got the better of me, so much so, that eventually I messed up and was told that I would not be hired again. I can’t believe that how easily I resigned myself to a life of sickness and daytime television. Not now. It would have been so easy for them to give my marking to someone who was better at it than me – and give me more teaching hours, the thing I was good at.
It took me a good few years to get my confidence back. Eventually I was looking around for something to do when I found DISH an information help line for people with disabilities (notice I am a ‘people first’ person. I hate the term disabled people or even worse handicapped people. I am the same person I always was, I just use different form of transport to get about). DISH allowed me to use all my hard learned lived experiences to help others who are going through the same things. They made me feel valued again and introduced me to a new charity The Cambridgeshire ULO who wanted to give a voice to people with disabilities, their families and their carers.
Not long after I joined their board of trustees they sent me on a course ‘Leadingability’ run by the Essex Coalition for Disabled People and that’s where I learned about the Social Model. The frustrations around where I could go and what I could do fell away and I turned all those negatives into positives. Now I am trustee of three charities and am a support worker for my local branch of the MS Society (Ataxia and MS have similar symptoms).
As trustee for the Cambridge Alliance for Independent Living (formally Cambs ULO) my role involves bidding for funding for new projects, all focussed on giving people with disabilities a voice. Our newest project is called The Model Conversation and is funded by the Heritage Lottery. We are recording interviews with local people to see if the Social Model has affected their lives too. The interviews will be recorded and made into a documentary to be used as an educational resource so that more people learn how valuable and able we all can be.
Memories of a Cross Board Event
Thursday, 18 February 2016 16:14
On Tuesday the 16th of February we held another of our Cross-Board Events. Once again it was a roaring success with a huge turnout that exceeded even our most wildly optimistic expectations. Lots of stalls, lots of guest speakers, lots of networking. The event was excellently compered by the Chairman of our Board of Trustees Mr Paul Taylor, who stepped in at relatively short notice to replace David Bowie, the singer-songwriter who sadly passed away earlier this year.
Lynne deals expertly with a couple of gatecrashers who are only interested in the free bar!
After a long day Martin reboots Sally!
Molly becomes sleepy due to all the excitement.
For information on further Cross-Board events click here Cross Partnership Board Events
Living with an ‘Invisible’ Health Condition by Graham Lewis
Thursday, 12 November 2015 12:28
I’ve been living with an ‘invisible’ health condition since I was 13 and with the pun very much intended it is a pain! Yes I have arthritis!
Many people only really think of disabilities and lifelong conditions that they can see eg the person is in a wheelchair, uses walking aids or has an assistance dog. However, according to the Care Quality Commission, nearly one in three people in England have a long term condition and many of these conditions are ‘invisible’ or not easily noticeable to someone else.
This has caused problems in my hips, shoulders, hands and most problematically for me my spine. I have taken so many different types of tablets that I can’t remember what I’ve had or not had. Some years I’ve so many x-rays that I’ve wondered if I’m going to glow in the dark! Due to the problems caused by the resulting inflammation in my spine I’ve been referred on a regular basis for physiotherapy. The other thing I’ve been referred for on what feels like a regular basis has been counselling. The pain from the arthritis has regularly interfered with my sleep patterns and this has resulted in periods of poor mental health.
Most of the time nobody is aware that I have arthritis; or if they know, they do not realise it may be causing me difficulties. I appear to be well, both physically and mentally. Although my Mother always knows –she says she can tell when she speaks to me over the phone, there is something in my voice that tells her that all is not quite right.
You’d think that having ‘lived with’ arthritis for so long (30+ years) that I would be able to understand my body and what is happening, predict flare ups and take steps to either prevent them or reduce the impact of them. Well basically, I can’t!
So you may wonder how this impacts on my life…. I’m regularly invited to the cinema and theatre but most of the time I won’t go. I just can’t sit still for so many hours, I need to get up and walk about, ‘stretch my legs’ so to speak. Going to pubs, clubs and festivals with friends can be difficult if someone knocks in to me, suddenly causing lots of pain and discomfort. I struggle to get in and out of cars. Not all medications mix well with alcohol!
I frequently find that I can’t lift my foot very far off the ground so I trip up – inflammation pressing on nerves results in messages not ‘getting through’! This also means that I can find steps difficult. And then there is my worst case scenario – a fall in my home. I have been known to fall when getting out of the bath which apart from being very painful could be disastrous if I was to hit my head and fall unconscious.
Oh and the drugs… so many horrid side-affects and then there’s the drugs to counter the side-affects. So whilst I might actually be having a good spell, the drugs could be making me feel ill.
Take the drugs and have less pain (I’m hardly ever pain free!); take the drugs feel sick. Don’t take the drugs and don’t feel sick; don’t take the drugs and be in agony! A real life Hobson’s choice!
Oh and before anyone starts to think I moan and groan about ‘my lot’ a lot… I don’t! I have a very full life! I love going out with friends and family and generally doing my thing. I’m incredibly busy as I have two jobs – one here at Cambridgeshire Alliance for Independent Living and at the other at Dhiverse (www.dhiverse.org.uk). And because I don’t like having any spare time I’m also the Chair of Stop Hate UK, the national hate crime charity www.stophateuk.org
Graham has been active in the voluntary sector for over 20 years, as a paid worker, a volunteer and as a Trustee of a number of charities. He has always been involved in promoting equality, diversity and inclusion and has worked with young people, people with hidden disabilities, homelessness and victims of crime. Throughout he has been involved in project management, group facilitation, training and coaching of staff and volunteers, as well as managing service delivery of both local and national projects. His real passion is supporting people to develop and grow to their full potential and identifying and removing barriers that are holding them back.
The Model Resuscitation
Monday, 26 October 2015 11:21
Things change so quickly these days. I’m still adjusting to Marathon becoming Snickers, and that happened way back on July 19th 1993. And apparently the Heimlich manoeuvre is no longer called the Heimlich manoeuvre but is now Abdominal Thrusts. At least that’s according to the recent Emergency First Aid in the Workplace course I attended a few weeks ago.
The resuscitation dolls we practised on reminded me of Iain Duncan Smith, only with more humanity:
We learnt how to put people in the recovery position, how to perform CPR, how to use a defibrillator, and also how to dress a wound.
Here is a picture of me having been dressed for a head wound
But even though I’m not the best at keeping up with the times, I fared better than one of the other attendees on that course. They loudly suggested that the best thing for choking was not Abdominal Thrusts née Heimlich manoeuvre but to “Punch them in the stomach.”
They then went on to say that “The best thing for a heart attack is to just punch them in the chest.”
So probably the best thing actually is to just ring for an ambulance.
Wednesday, 21 October 2015 09:43
Recently I have been spending some time at the wonderful place known as Headway Cambridgeshire (www.headway-cambs.org.uk), an organisation that provides specialist services and support for people with an acquired brain injury and the people who care for them, interviewing some of their clients for The Model Conversation.
I first visited Headway back in May to meet the team and introduce myself and the project. I was given a warm welcome, and taken out the back to view the garden they maintain and meet the chickens they keep. I’m very fond of chickens so this was great; they were very cute and, er, chicken-like.
(I’ve been trying to persuade the trustees here at CAIL Towers that we should get an animal to have around as both a pet and a mascot. My lobbying for a goat has so far gone unheeded. Maybe aiming for livestock is a little ambitious, but at least we’d never run out of milk again.)
Everyone I met that day was very enthusiastic about the project and several people were willing to take part. So a couple of Thursdays ago I grabbed the recorder and a handy volunteer and went to see them again. They are based at the Ida Darwin hospital in Fulbourn, in a very green leafy environment that on a summer’s day is almost idyllic. Even in the first flush of autumn it is still a beautiful setting.
So far we have interviewed three people who use Headway services, learning about their lives, their disability and the things they do at Headway. We plan to go back and do a fourth interview soon.
In addition to the fascinating life stories we have heard, the other shining light of the interviews has been the wonderful regard for Headway that its service users espouse. They cannot praise the organisation enough, each of them saying just how crucial the time they have spent there has been in their recovery and rehabilitation. It was wonderful to experience at first-hand the positive effect an organisation such as Headway can have upon the people it supports.
Headway Cambridgeshire is launching a history project of its own very soon. “Making Headway” will look back at the way people with brain injuries have been treated since the mid-19th Century and will also research the history of the Ida Darwin site where the charity is based. (http://www.headway-cambs.org.uk/2015/10/headway-cambridgeshire-launches-national-lottery-funded-project/)
Cambridgeshire Alliance would like to wish Headway the best of success with their new project, and thanks them greatly for all the help and support they have given us with ours.
Time And Model Conversations In Space
Tuesday, 13 October 2015 11:26
Things have been a bit quiet on this blog lately. This has been due to a number of factors: the Shredded Wheat factory burnt down causing the office to be inaccessible for a number of weeks, I then lent somebody my feet and they ran off with them, and also my ongoing work leading the People’s Republic of China into peaceful democratic revolution.
Primarily though it has been down to the speed at which the project is now progressing. We are half-way through the interview stage with ten interviews completed, and are currently recruiting a film-maker to shoot the documentary about the project. In addition the creation of educational material from the information we have gathered is soon to start, with a meeting at Long Road Sixth Form College early next week.
If we were going any faster we’d probably start travelling in time.
Too Pretty To Be Sick by Alena Taylor
Sunday, 06 September 2015 22:34
Too pretty to be sick was said to me by a complete stranger about 4 years ago. I was sat having a latte in a well known coffee chain. I’d been doing some shopping and was sitting down for a rest with my oxygen cylinder by my side. I have Cystic Fibrosis so people saying stupid things is something I’m quite used to, but this really took me aback. I didn’t know what to say (and for those of you who know me I’m not usually short of words!). I think the aforementioned stranger was trying to be nice and probably thought it was a compliment, but it was just a perfect example of the thing that throughout my life I have found hugely disabling, other peoples attitudes.CF is a genetic condition, so yes I have had it since birth and no it’s not contagious. For the majority of my life, unless you know what to look for, it has been an unseen disability. As my health deteriorated and I started to use oxygen and eventually a wheelchair. Watching the change in the way people look at you, talk to you and treat you has been something I’ll never forget. The last of those three things has been the most striking. I have been screamed at and had my car thumped for legitimately using my Blue Badge in a disabled persons parking bay. As a child I was asked to leave a sweet shop because I coughed. I have been accused of being lazy, of being anorexic and have been told that Manuka homey will make all the difference. When in a wheelchair I’ve been patted on the head, patronised and talked to really slowly… Just in case my brain had somehow been affected by my latest chest infection. Now I’m three and a half years post double lung transplant. My life has changed more than I can possibly describe and my disability has once again become invisible. Despite the fact I now run a pan disability charity I still find that I’m having to defend myself and my lifestyle ‘choices’ and justify how I can possibly understand the issues that others are facing.
With a long term health condition focus will naturally sit with the medical, drugs, physio, transplants etc., but quality of life is always of equal importance. Having to justify, explain, excuse and apologise for your life on an often daily basis takes energy and emotion that would be better used elsewhere. The barriers that uninformed attitudes create are often the most important to break down. If we can do that the rest will follow.
To paraphrase a quote I heard years ago and have always remembered, ‘it takes some people an extraordinary amount of effort to appear ordinary’. If this project can help more people to understand that then we will have at least started to move The Model Conversation on.
Alena has worked in the voluntary sector for over 15 years before which she worked in the leisure industry. Alena’s past work has largely been in the field of prevention and health promotion with a particular focus on sexual health and young people. Alena’s career has included working as a project officer, trainer and educator. The drive for this work has always been a belief that people should have the right information, at the right time, to help them to make informed decisions about their lives.
“It’s a model and it’s looking good…”
Wednesday, 05 August 2015 09:12
As Kraftwerk – the German band that is probably the best thing to come out of Berlin since the terms of surrender in 1945 – once almost sang in their 1978 song “Das Model”. I could probably write reams about Kraftwerk – especially as much of their output has intriguing connections with perceptions of and attitudes towards disability – but this post is not about them or their model. It is about a far more important model – The Social Model of Disability.
The Social Model of Disability is a concept that emerged in the 1980s in the UK. It is seen as a counterpoint to the then prevalent attitude characterised as the Medical Model of Disability.
Put simply, The Medical Model represented traditional attitudes to disability – that a disability was something that medicine would either treat or cure so that a person with a disability could exist within society. What The Social Model posits is: It is not the person who is disabled, it is society; it is not the person who needs to be either treated or cured, it is society.
One of the major aims of our oral history project is to document how circumstances and attitudes have changed over the last few decades in terms of societal shift from the Medical Model to the Social Model.
How have attitudes changed? How have issues of inclusion and accessibility changed? And how have things not changed: what else needs to be done? What changes need to happen over the next 30 years?
These questions are important because although some things have changed for the better there is still a long way to go.
I personally find the Social Model fascinating, and I have found that once you are aware of it you can find examples of it everywhere. Is this or that place accessible to a wheelchair user? Could a person with a hearing or sight condition use this or that amenity? What is the attitude of the media or the general public to someone with a particular disability?
There are a lot of questions in this post, intentionally so, because this entire project is about asking questions. Along the way we will probably answer some of them. But no doubt we will also find many more that need to be asked.
Tuesday, 21st July 2015 11:16
So what is oral history? Honestly, what is it?
A lot of people have heard about it, and are aware of it, and know that it exists. You know it exists. I know it exists. But what actually is it?
This is one of those questions, like “Why are fire engines red?” for which nobody seems to have a concise and ready-made answer. (Although, as I understand it, it is because when a fire realises it is the same colour as a fire engine it will think the fire engine is a friend and won’t attack it.)
The Oral History Society website (http://www.ohs.org.uk/index.php), which has loads of interesting stuff on it and is well worth checking out, describes it as:
- A living history of everyone’s unique life experiences
- An opportunity for those people who have been ‘hidden from history’ to have their voice heard
- A rare chance to talk about and record history face-to-face
- A source of new insights and perspectives that may challenge our view of the past.
Those four points succinctly sum up what we are attempting here with The Model Conversation.
We want to record people’s experiences of disability in their own words, with no set agenda and with the focus on what the interviewees think are important.
By documenting these histories we want to see how the gradual change from the medical model of disability to the social model of disability occurred, and so by recording how things have changed over the last few decades we hope to be able to pinpoint where we need to go in the future and what more needs to change.
Another good website is that of The British Library (http://www.bl.uk/ ). Here you can access actual oral history recordings to stream and listen to online. There are also transcripts of interviews that can be downloaded and read. So if you want to hear David Bowie’s opinions on wasps (apparently he doesn’t mind them, “up to a point”) or the collective reminiscences of a small Welsh mining village about the Tunguska explosion and its effect on the Siberian salt industry, you can’t, because they don’t exist. But there’s heaps of other stuff on there that does.
Specifically there is a section all about oral history and disability: http://sounds.bl.uk/Oral-history/Disability-Voices). Have a look. Or a listen, rather.
Making (oral) history.
Thursday, 02 July 2015 13:51
So things are progressing apace here at the Cambridgeshire Alliance Oral History Department: equipment has been purchased, titles decided upon, volunteers recruited (well, almost) and interviewing is soon to begin in earnest.
We have it on extremely unreliable information that David Starkey himself is said to be “living in constant fear for his career and reputation” such is the weight of expectation for this project, and even Herodotus himself – were he still alive – would no doubt be wringing his hands in anguish at the sheer scale and ambition of The Model Conversation.
So bookmark this page and come back frequently for more updates – if this one posts correctly to the website then there’ll be no stopping us!