The ILMI Strategies for Change Project had a very exciting guest speaker recently. Phil Friend from the UK came and talked to us about understanding the importance of the Social Model of Disability.
Phil kicked off the session by telling us that he contracted polio at the age of three and spent three months in an iron lung as he was unable to breathe. After this he spent three years in hospital “being so called rehabbed and then went off to special school where he stayed until he was 16”.
He left school with no qualifications, but his mother organised an interview for him in the Civil Service – “it was a safe place to work, you never got sacked, you could be rubbish at your job, but nobody really cared”. His mum believed that this would be a “fitting job” for Phil, so off they went to the interview, “I answered most of the questions, as my mum sat in the interview and made sure that I didn’t muck it up – I got the job”. It was a good thing back then because you got the opportunity to go to college. Phil got his “little bits of paper” and ended up qualifying as a childcare officer/social worker. He then worked his way up the ladder to become the principal of an approved/reform school – large institution with lots of naughty people in it but he loved it. But the 80’s came and Margaret Thatcher and as a result (see – www.bbc.com/news/uk-politics) Phil was made redundant like a lot of other people and he had to find work – wife, kids, mortgage.
Phil went to a meeting about disabled children one day (as he was a childcare officer – never worked with disabled children) and at this meeting one of the delegates asked him “why was he pretending to be normal”. Phil was intrigued, so he asked her what she meant, they had lunch and she explained that disabled people face discrimination daily. He knew that this wasn’t right and as a result got involved in the disability movement in the late eighties. And of course, once he started to “hang out with a few of these so-called disabled people my eyes were well and truly opened” and it made him “bloody furious” – furious about what was going on. So, Phil channelled his frustration in setting up a business which looked at employment opportunities for disabled people.
Phil was also very involved (as a disability activist) in the implementation of the Disability Discrimination Act and became Chair of Disability Rights UK. He is still involved although he is semi-retired and is currently the Chair of the Richard Research Institute for Disabled Consumers and is Vice Chair of the Activity Alliance – supporting disabled people to become more physically active – see – www.activityalliance.org.uk/how-we-help & (Making active lives possible – youtube).
Phil invited the group to answer a question – “there is no such thing as a normal person, do you agree or disagree?
All agreed that there is no such thing as a normal person – Phil found this very interesting because he didn’t define what normal was, for example, if “I told you that it is normal to be a man then I’m guessing women are going to disagree”, “if I told you that it is normal to be 6 foot 3 most of us are going to disagree”. So let us establish that the word “normal” is used an enormous amount and in all walks of life but when it’s applied to disabled people it is a “judgmental statement” – “there is normal and abnormal”- see – www.pwd.org.au/resources – Disability info/social model of disability).
Historically (as we all know) disabled people were and still are “considered by society as abnormal and going back to the 40’s there were other labels used – “cripple, invalid, mad, subnormal, educationally subnormal, spastic” and regardless of where you lived (be it Ireland or elsewhere) disabled people were seen as “less than and not viewed in a positive way. But this has all changed, we (disabled people) are now deciding what we want to be called.
The Social Model of Disability is “our definition of what disability means to us – not non-disabled people’s definition. In the 1960s and 1970s both in the UK and in America (late 1980’s in Ireland) groups of disabled people began to say, “we are not having this anymore, we are fed-up with having no rights, we are fed-up with not being considered as equals, we are fed-up with being treated differently, we are fed-up of been viewed negatively, and fed-up with been seen as a burden”.
We were deemed expendable back then – we couldn’t contribute and if we were not deemed expendable, we were pitted or felt sorry for. So whichever way we were looked upon “we were screwed”. (Phil told us that he is involved in a campaign called “Not Dead Yet UK – see (www.notdeadyetuk.org & www.ilmi.ie/uk-not-dead-yet), which is about rebelling against assisted suicide. And “Oh My God, in Canada for example they have now worked out that it is much cheaper to kill a disabled person than it is to give them palliative care – the drugs cost far less”).
Hence the beginnings of the Disabled People’s Movement – collectively disabled people talked about claiming their rights back – Mike Oliver – see (Disabled Students Campaign – Social Model of Disability with Mike Oliver – youtube) and Vic finkelstein – see – (www.independentliving.org/docs1/finkelstein.html) were two of these disabled people in the UK, both academic’s and both contributed to “social model thinking”, there was also Jenny Morris – see (www.disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/morris-Pride-and-Prejudice.pdf), Jane Campbell – see – (www.bbc.co.uk/programmes).
From Ireland there was Martin Naughton, Joe T Mooney, Donal Toolan, John Doyle, Ursula Hegarty, Florence Dougall – see – (www.ilmi.ie/by-us-with-us/).
All these people were saying that we are much more than disabled people, and disability does not and should not define us. We were and are, women, men, children, gay, straight, black, white, mothers, fathers, grandparents, etc. Disabled people were repositioning themselves and getting organised to demand their rights.
In 1977 (in America) 150 plus disabled people took over one of the federal offices and refused to move – it was a direct-action campaign for civil rights for disabled people – see (www.bbc.com/news/stories). This was “civil disobedience” – they were not getting the support they needed, – and forced the government to pass a federal law which meant that federal funding could not be given to any project unless disability was part of it. This was a massive step forward because what it meant was that funding were made available. The British & Irish experience was somewhat different as we had a so-called welfare state and we had hundreds of charities (in Ireland we had the church) “which serviced or looked after disabled people”. News travelled far and wide and disabled people from all over the world used this as a bedrock to kick start and demand their right to live good lives.
Social Model Thinking
So, the Social Model of Disability is our view. And what Mike, Vic (and many others) did was to deal with the situation in an academic way. And the first thing that these people did was to tackle medical model thinking and the notion that doctors and other professionals were the so called “experts”. Phil told us that he contracted diabetes a little while ago, so the doctor told him that he couldn’t eat biscuits, sweet things or chocolates and his reply was…” okay, thank you…let me just get one thing clear, I want you to tell me what happens if I eat these. I don’t want you to tell me that I can’t eat them, your job is not to tell me how to live my life, your job is to tell me what will happen if I eat sugar and then I will make my own decision” thank you very much.
Medical professionals have been the experts for far too long. They have been allowed to “hold the power”. Phil was sent to a special school – “signed off by a doctor, not a teacher – he was sent because he had polio – this was nothing got to do with intelligence or his ability to learn”. Now we all know that doctors have their place, but it doesn’t mean or shouldn’t mean that they are “our gatekeepers” to living like everyone else. We (the disabled people’s movement) have been trying to shift medical opinion to “doctors supporting us with our impairments/condition/s while helping us to live our life to the full”.
The second thing that these guys did was to tackle the negative stereotypes and the “tragedy & charity” systems that perpetuates difference – the idea that we were dependent on non-disabled people to “look after us” and service us (passive recipients) and that good non-disabled people would run marathons or host fundraisers and we had to feel and be grateful. All these notions were under attack because of social model thinking – see – (www.youtube.com – Piss on Pity film screening discussion).
The social model thinking approach was about separating impairment/condition and disability – see – (www.the-ndaca.org/resources/). We are disabled people, so, for example “my (Phil) impairment/condition is polio” but “my disability” are the barriers that I face/experience because I live in a non-disabled world, and these are two very distinct things. Our impairments are real, and we do have to manage them (with support from doctor’s and other clinicians) but it’s the “disability bit” that we need to really focus on as disabled people that want change.
Phil has no conscious memory of not being disabled, somebody who has cerebral palsy (CP) has no conscious memory of not being disabled – grown up with it, it’s just part of you, you manage it whatever way you can but for somebody who has a massive stroke and suddenly are forced to “join the disabled club – no experience only of what they know that it is not normal to be disabled – this can be very difficult”. Some disabled people can and do disable themselves – not consciously and this view can be controversial – see (www.disability-studies.leeds.ac.uk – Mason Michelene Mason PDF)”.
Disabled people are not the same as everyone else, just like non-disabled people are not the same as there non-disabled counterparts. Are you normal me or normal like you? Disabled people are unique, our impairments are unique, and they look different in every individual. “My CP (Fiona Weldon) is different to someone else’s CP”. Phil’s “polio” is different to somebody else’s polio”. The important thing here is that we collectively share the lived experiences of how society manages disability – the systems – can be eradicated, but only by us.
We need not to allow the barriers that try to control us and service us to define who we are, or how we should live. It IS NOT OK that a doctor/clinician “has the power to determine our lives”. But the Disability Movement has brought us together. We are sharing our lived experiences, we are supporting one another, and empowering each other to fight the system and tell “the powers that be” what we need – what we want – see (www.youtube.com – Declaration of Independence).
Phil told the group that there is a very clear distinction between talking to a disability activist’ group and talking to a non-disabled group because they don’t have the lived experience. We do have non-disabled allies; and they want to help us because “they get it” but they cannot speak for us – they work with us or not at all. We also need to (as activists):
- Identify clearly who our enemies are – Phil’s work in the past has involved disabled people’s right to employment and the employers were the “oppressor’s”- know who is on our side and who is not
- Be very clear about what right/s you are working towards – be as precise as you can
- Be very specific about the way in which you want to tackle the issue that you face as individuals/as groups.
What the Social Model of Disability says is that disabled people are oppressed by a society that does not consider their needs. For example, Phil uses a wheelchair to get around and if “I cannot get into a building because there are steps, who’s fault is it, it’s definitely not mine!”. In the seven years of training an architect gets, only one week is related to disability/accessibility/universal design.
People with impairments are “disabled” by the barriers they come up against every single day – it is that simple. Phil has polio “my legs don’t work, and I want to get the bus, “I have three choices – go and see my doctor and say doctor please fix me because I want to walk, I could go to Lourdes for a miracle cure, or they can redesign the bloody bus”.
Since the discovery of the Social Model, disabled people internationally have campaign tirelessly for changes in the systems that excludes them. In Ireland for example we have the public transport accessibility retrofit programme (amongst’ other things), this is about
- Upgrading bus stops in rural and regional areas
- Upgrading train stations to make them wheelchair accessible
- Providing grant support for the introduction of more wheelchair accessible vehicles (WAVs) into the taxi fleet.
There is also a political will for a fully accessible transport infrastructure – see (https://www.thejournal.ie – ‘A significant challenge’: Unclear when public transport will be fully accessible & www.gov.ie – Minister Rabbitte reconvenes Transport Working Group under the National Disability Inclusion Strategy) and of course article 9 of the UNCRPD – Phil told us that in the UK the law demands that all buses must be accessible – level access, with audio and visual accessibility features built in. The important thing here is that the buses were changed and not us – we do not need to be cured and here comes something really interesting – Phil “actually quite like’s being disabled, I quite enjoy the status and I don’t want a bloody cure”. If we were to say, “right women (sexism) the only solution to get what you want is to become a man – have a sex change operation and you will be fine, or black people (racism) avoiding this is simple, become white”. How “bloody preposterous, women becoming men and black people becoming white”.
From the mid 18 century, disabled people were viewed as the problem, get yourself fixed, well “I’m (Phil) sorry, I like being who I am, I like being me, OK it can be inconvenient, I’m not saying that it is a bundle of laughs all the time, there are times when I would quite like to be able to walk but the fact of the matter is I’m seventy bloody six now, and I haven’t walked for 73 years, what’s the point”.
What Mike Oliver, and Vic Finklstein (with many others) did, was to challenge the stereotypical view that disability was a bad thing.
But the fact was that society “needed to be fixed”. Separating out the impairment/condition “polio”, from my disability “the way other people view/treat me”. If we look at people with emotional distress conditions or people with down syndrome for example, most don’t have a problem with physically accessing buses, or with steps, but they got an even bigger problem – attitudinal discrimination, far more insidious than climbing steps. A building is easy to fix, but fixing people’s attitudes is a challenge.
50% of disabled people in the UK are unemployed, and its nearly 80% in Ireland – do you think that’s because the buildings are not accessible or is it because of attitudes – see – (www.nda.ie – Public Attitudes to Disability in Ireland Survey 2017 & www.irishtimes.com – Ireland is no country for disabled people who want to work – ESRI Report). ATTATUDES I’m afraid!
They are three distinct barriers that the Social Model explores:
- Physical barriers – limits some disabled people e.g., wheelchair users from moving around freely – inside & out
- Attitudinal barriers – negative beliefs and assumptions means that disabled people “don’t get a fair crack of the whip” – IMPORTANT – some of the time attitudes towards disability is not deliberate – “if you have been brought up to feel concern for disabled people, that you want to help disabled people, that you want to look after disabled people” – unconscious bias – see – (www.youtube.com – Unconscious Biases: Shattering Assumptions and Surprising Ourselves). And of course, these are oppressive and very difficult to change “because they are insidious” – you can’t necessarily see them but there. And moreover, the system is sometimes built with the best of intentions (concern, belief that disabled people need to be cared for, pitied for – can’t walk, talk, hear, learn, work, etc…) and that’s the problem. This is a far more difficult thing to change/challenge, to help people understand that what they are doing isn’t helping disabled people – it is making things worse
- The rules – “it just the way it is”, e.g., you will stay in hospital until the doctor says you can go, you cannot do certain things because of the rules – cannot apply to be a teacher because you are not physically fit, you cannot do that because it might be dangerous, you cannot go near heavy machinery because of A,B,C… So, the rules, the way the system works – institutionalised rules and their structures, disable those with impairments.
Disabled People “V” People with Disabilities
Is there a difference – Phil defines himself as a “disabled person” because he is “part of the Disabled People’s Movement”, he is “not part of the peoples with disabilities movement”- is there such a thing?. So, he is making a “political statement” when he says that he is a “disabled person”.
How you define yourself is entirely up to you. It isn’t for anyone to say how you describe yourself, but for Phil and all of us that are involved in ILMI are “campaigners – we want equality, we want social justice” – the same as black people, gay people, or other marginalised groups, e.g., travellers. You don’t hear a black person say I am a person who is black – black lives rights, and this is about black power – it is a political statement, it’s about rights, it’s about social change. Disability is a social construct – see (www.youtube.com – Disability as a Social Construct) and that “is political”. Nearly 80% of people in Ireland who have a thing called a disability/condition/impairment are unemployed, “that is a political outrage”. The only reason they are unemployed is because somebody has decided that they won’t employ them because they have a label called disability.
ILMI is not about running knitting classes, it’s about social change, it’s about building a collective movement, and this is the bedrock of Strategies for Change. The only way we get buses accessible and equal treatment is by changing attitudes “collectively”, changing the rules and making the world a fairer place where disabled people are included and seen as equals.
We are not the problem; non-disabled people are – “they are not all bad, or nasty or even horrible” but they have been allowed to make “the rules”.
They have decided what we can and can’t do and we as disabled people (using the term very deliberately here) must challenge and change this mind set to live the lives we want.