Bringing disabled women together, mobilising
and sharing through lived experiences

Thank you very much.  Okay so hi I’m Simone … I’m a disabled woman, and I often describe myself as somebody who’s labelled by the standard examining, standard IQ tests as having learning disabilities.  I think this is important because I’m somebody who has an invisible impairment and because I don’t have a learning difficulty where people can assume that I am disabled by society.  It does present particular challenges particularly in my early time in campaigning, in getting your voice heard but actually being seen as a real disabled person who’s got something to say and something to contribute towards campaigning for disabled people’s rights and also who are you to speak on behalf of disabled people, particularly those with learning difficulties.  So hopefully I come with a particular perspective on that, from somebody who has a hidden impairment and because the learning difficulty label is so large in terms of variation of how people experience barriers.  Often a lot of assumptions are made about what you can, what you can’t do, people don’t ask about what you can and what you can’t do or what support you need in order to participate in everyday activities that most people take for granted.

So anyway, I’m one of those people who, from the day I was born, I was kicking arse.   I really did have some confidence.  At the age of three, I remember my parents were taking me to physiotherapy, and being told how to eat a yogurt in front of a mirror because I had physical difficulties, that comes with dyslexia.  And I remember running out of the room, thinking – I was thinking it, I couldn’t speak it, thinking why did my parents need this support to do this?  Why am I in this room?  You know, in a separate room from everybody else in terms of learning how to do everyday tasks?  While actually, that should have been done in my own home.  I remember that a lot of the time, my body was being stretched and manipulated but I had no understanding of the reason why but I did feel that, for me, that felt very uncomfortable.  But that was the beginning of getting my voice heard.  As a consequence of that I went to various special schools and dare I say it, I was still speaking up about my rights.  At the age of 10 an ex-pupil said to me “Oh, I remember you Simone, you were talking about poor images of children with learning difficulties in the media.”  What?  At the age of 10?  At the age of 12 or 13 we had a little label on the train, that train that would go from London back to our school, that said ‘This coach is reserved for mentally handicapped children’.  Now what do you think I did?  I tore the bloody thing down!

Interestingly, when I felt I had a voice – I felt like nobody was hearing my voice.  It was being interpreted as being difficult behaviour, I needed my behaviour managed by other people.  I was a Moaning Minnie – lost her pinney.  So therefore it was always being seen as a negative thing to speak up and within my family context, I had a similar issue there – I come from a traditional Jewish family and Jewish boys are always valued more than Jewish girls, particularly if they’re non-disabled. So my brother got a lot of resources, he went to a public school, he had opportunities that I didn’t have, he had more pocket money than me.  Here was me saying “Why, why?”  But because I wasn’t getting any responses I just kept persisting because I remember one social worker that said to me “Simone you’ve got to keep going with this because you will make it, you will stand up for people’s rights.”  And she was just one person who really gave me that confidence whilst I still was in that environment where nobody would listen to me.  People wanted to devalue my voice simply because I was disabled, simply because I went to a special school and it was through that I just kept maintaining “I know I have a voice, I know I have a voice”.  But the question was, where was I going to share this voice?  I wanted to join a women’s group/movement at the age of 13 or 14.  I was into animal rights but as you can imagine, being in the special school and there was no internet in those days, there really wasn’t much of an opportunity to really be able to nurture that voice and really get a sense of that voice but it was still there.

So when did I begin to really feel that I had a voice?  Well I was at the BBC, I was working for the disabled people’s programmes unit, some of you may or may not know, it was called ‘Programmes from the Edge’, we did lots of programmes, we filmed lots of campaigns around disabled people’s rights.  And I thought, ‘you know what? I don’t want to be behind this camera watching everyone taking part, doing this campaigning … you know what?  I want to get stuck in and do it’.  Because I identified as having a learning difficulty at that time– I was actually involved in the Special Olympics movement which I was helping a young lad with learning difficulties become professionally sponsored … in my former life I should say.  What was really interesting, Gary’s father said to me “You’ve got to go out and you’ve got to speak up and tell people why special schools are the worst thing possible.  It’s only through speaking up that other people will hear what it’s really like being in a special school and the barriers that you face, and give people the opportunity to change.”

So my moment came – two things at a similar time – I had an article published in the Jewish Chronicle, I got a BTec National Diploma and I was nominated to go and see the Duke of Edinburgh to receive my diploma.  What a wonderful achievement for a young lass with learning difficulties: top of the class and gets a BTec National Diploma.  And the JC wrote this really patronising article about me and I thought “Ah, things have got to change”.  Well the first thing that happened was I got involved in block telecom … because I was really interested in challenging the whole charitable image of disabled people and at the same time I was beginning to get myself involved in People First, that’s an organisation run by people with learning difficulties and my first thought at that time was, people with learning difficulties do need somebody to come in and help get involved in campaigning around civil rights legislation because at that time the campaign was very much dominated by disabled people with physical and sensory impairments.  It was like – where were my rights?  And it was at that time that I picked up that fabulous thing called the social reward of disability.  Wow!  Barriers faced by me were nothing to my impairment.  For a lot of the time I’ve blamed myself for the issues because that was what was coming from the environment so my voice came through understanding the social reward of disability, understanding how poorly it was written, it was written around people with learning difficulties, I got the idea simply.  The organisation was about social and environmental barriers right, that’s civil rights, isn’t it?  And therefore that’s where my voice began to happen.  So I got involved with People First, I was the young campaigns co-ordinator and there were a lot of challenges there because at that time the people – there was a hierarchical sense around learning difficulties: “Do you really have the same learning difficulty as other people with learning difficulties?”   Because other people with learning difficulties at People First had more deemed ‘global learning difficulties’ whereas mine was related to dyslexia and I though I don’t get that … I have the same barriers, I was treated as though I had a learning difficulty, everybody was treated the same whether you had a global learning difficulty or not.  It was always my experience that people have treated me, have said to me, you know “Do you want me to help you cross the road?”  “No, I don’t need anybody to help me cross the road.”  Some people do, and that’s fine – I don’t want to undermine that, but it was that assumption that people didn’t ask they just kind of grabbed your hand.  So therefore I understood, and because I went to a special school like other children with learning disabilities … you know, having less opportunities that non-disabled people in participating.  But there were challenges there and the challenges were – to get my voice heard there.  Were you really a disabled person?  Who are you – and I came in probably a little bit naïve, I realised that there was a lot of work that needed to be done.  And what I think I learned from that experience was that a lot of people with learning difficulties saw politics somewhere out there and they saw civil rights legislation as somewhere else – there was no putting the two together.  And what I was able to do was do a lot of grass roots work in terms of going to speak to groups and get people to understand that we actually need to have civil rights in order to have the opportunities that non-disabled people take for granted.  So therefore one of the things I learned from that experience was how important, when we are speaking in terms of finding our voice, is understanding, in terms of supporting people, is understanding, is about making those connections between society, the barriers and the legislation because it’s so easy if all you’ve been told all your life, like I’ve been is: “You’re the problem, you need to be fixed” and nobody gives you to tools to understand: if you remove these barriers then you’re able to participate and what I found through that is your voice becomes much stronger because what your understanding is, is actually whilst sometimes you recognise that our impairment does cause us some barriers, and we do have some feelings and there are some limitations to how we experience our life, but we also have the opportunity, where there are barriers to be removed, to also advocate for that.  So it gives you a much more holistic way of looking at your experience as a disabled person.

So in terms of actually talking to MPs themselves, I actually found people were very receptive to that and I think that was probably because other disabled people, they laid the ground.  And I think what I’ve also learned from that isn’t just about your emerging voice in terms of – about speaking – it’s also about, sometimes what we forget is, actually there is, when we are talking, when we are doing, we’re also speaking and I speak for reaction and therefore through doing direct action, whether it’s working at People First, or working for a disabled people’s network, or on various other campaigns around civil rights legislation and the community care legislation and the disabled people’s freedom drive, around people in institutions, that actions often can speak louder than words as well.  And participating in action.  And one of the things that I found quite liberating was that whole idea that actually you can get involved in things and you can speak up, both individually and collectively if you’re involved in actions yourselves.

Anyway, going on to getting more involved in political scenes where you’re starting to play some political games and you get your voice heard where there are political agendas.  So I’ve stood for the Green Party and I was the disabled persons spokesperson for the Green Party and I stood at the GLA elections and I also stood as a prospective parliamentary for the party.  At that time the Green Party were debating the social model of disability so I was invited to get involved in that but as you can imagine, there was quite a lot of debate and there still is quite a lot of debate in the Green Party about the social model of disability and how that applies to their policies.  Initially I got involved in being asked to speak about this, which is what I did, and that is what inspired me to get involved with the Green Party.  So for the GLA campaign, that was going back 15, 20 years, I knew that everybody was going to speak about environmental issues as that’s exactly what the Green Party stands for, it’s about environmental issues.  And I thought, “You know what, I’m going to go for something very different” because part of the GLA list is there’s 9, 10 people and what you hope to have is  a diverse range of people with a diverse range of ideas.  You want to appeal to the electorate, the Green Party doesn’t just deal with environmental issues, it does deal with human and civil rights legislation and I thought “that’s the ticket” I was going to go down.  And so I put myself forward, I did the usual canvassing, but I said “I’m not going to come on the environmental ticket”, because that isn’t really my area of expertise or my area of passion, whilst I do respect the Green Party and that’s what they do.  And therefore I decided to go down the disabled people’s rights agenda and therefore having a different voice was also helpful.  So actually recognising you have a different and unique voice, but a voice that complements a much bigger voice in terms of a political agenda.  So I went down that line and canvassed as I normally did and I was surprised to find myself as number 6 or 7 out of 10 people who were on that list, so I was put forward as being part of the GLA list.  A couple of years later I was still involved in the Green Party, I had a big issue around the social care agenda.  The Green Party decided to have a social care agenda and it was very paper but they sent it to me as the disability spokesperson and they said would I endorse it?  I said “No, not over my dead body” I wouldn’t endorse it because you know what – it was all about institutionalisation, it was all about people with learning difficulties being put into residential care and they didn’t even recognise the Independent Living Fund, they didn’t recognise disabled people’s independent living.  So I was accused of God knows what – how dare I split the Green Party up etc.  So I said, “Okay, let’s try and run some workshops and let’s try and get this issue on the agenda and let’s see who my allies are” because that’s really important when we’re finding our voice.  I also established that we’re not always alone and that there must be some allies out there who can come and join in the debate.  Through that exercise I managed to find a number of disabled people, hiding away, in the Green Party, that were prepared to come out and say “Yes, I’ll support you, I do get the Independent Living Fund and I do support independent living”.  So I ran a number of workshops and often I find face-to-face meetings are always really important.  Finding a voice is about building relationships, often it’s about face to face relationships alongside and facebook, obviously that’s now used and at that time there was a lot of debate going on on line and I don’t often think that’s the best way of getting your voice heard.  After a number of sessions I decided that working through what this actually might mean in terms of the Green Party, recognising that if you are going to support the social model of disability and you support disabled people’s rights then you have really not much choice but to re-write the whole social care policy that affects disabled people’s rights to independent living.  So when I went to a conference the next time and I said, as a disability spokesperson, if this doesn’t go through, in terms of endorsing the social model, I can no longer sustain my place as a Green Party disability spokesperson, if I don’t believe it’s going to be about disabled people’s rights.  So I think one of the things I learned from that is that, really, the important thing is the integrity of your voice, the fact that you shouldn’t be compromised, just because there’s an organisation, because someone else has taken a very different line and usually a line that isn’t defined by disabled people themselves.

So the good news was, that social care policy did go through for everybody other than people who have mental health issues, there was a little compromise on that, the Green Party felt they needed a little bit more time in order to revise the mental health sections, so I thought okay, that’s fine, given that that would go through next time round.  The other important thing around that is around ideas.  I think the important thing about having a voice is that sometimes, when you have a voice, you’re often having to promote unpopular ideas, ideas that go against the grain and my experience of that has been when I was working at the Integration Alliance and the Alliance for Inclusive Education where I strongly believed that we could never talk about inclusive education unless we talked about the qualification system, based on the notion that some people’s brains are worth more than others – based on the idea that if you get qualifications and grades you are cleverer than other people.   And that had been a big challenge, particularly if we were going to be talking about children and young people around inclusion.  So what did I do there?  So getting my voice heard there was another challenge.  This one was really about the dominance of men and parents who had really – parents of disabled children who were bowing down to what a lot of disabled people were saying.  So at that time the inclusive education movement was campaigning on the fact that inclusion was beneficial because disabled children could do examinations.  At that time I had to challenge a lot of those myths because there are some children who may never be able to get qualifications, however, they still could benefit from inclusive education.  So at that point, what we really had to do was look at how do we get that message across, what are the different ways of getting that message across?  So in terms of getting my voice heard I obviously brought lots of stories about how young people were included in mainstream education.  I said to some families “Why don’t we come and visit schools that are doing some of that work without necessarily that focus on qualifications” and having to keep on challenging the policy at that time that was pushing forward, what I felt was a very mainstream policy that was favouring government policy.

There were a lot of challenges but I kept very stiff about that, I wrote a policy paper, I outlined very clearly where these ideas were coming from, they were coming from the eugenics principles, they were coming from IQ tests – so spelling out exactly where they were coming from, and doing a number of talks that were related to those issues.  So whilst I wasn’t successful first time round, however, I was starting to build up those relationships with people who could at least see what I was doing.  It did leave a number of years of me having to do my own work but at the same time that I was doing my own work, I was doing SEN tribunals, I was supporting young people and families who were challenging local authorities’ decisions around SEN.  And then I started building those relationships with parents and I started saying to parents “Look, why don’t you get involved in some of the tribunal work, we do need your voice here alongside us”, so the idea was to combine that voice and as a result of that there was a split within the organisation that allowed opportunities for new voices to come in.  So I asked a number of people to get involved in the Integration Alliance and the Alliance for Inclusive Education and through that and developing a new way of looking at inclusive education, we were able to shift the power down from inclusive education based on exam results and children’s abilities to rights of belonging regardless of who you are and your abilities.

So what have I learned through my quick journey, from my experiences?  I think what I’ve learned is: if you’ve got a voice, know it, persistence always pays off is always my experience, there will always be a space for your voice, I think particularly now we’ve got the internet, there’s more opportunities to share that space and develop the strength of that voice.  I think I learned that there’s lots of different ways of getting your voice heard, either through speaking like I am now, through taking part in demonstrations, through demonstrating by practice, through demonstrating good practice and getting allies is really important, there’s nothing better than getting that echo in that room.  Those are the lessons that I’ve learned and also that having the social model of disability has really empowered me to not only have a voice but also say “This is my own experience” and that’s really important, to have that voice, to be able to contextualise that voice, to be able to understand that that there are other people with similar voices and similar experiences where we can join collectively for world change.

I don’t mind how we do this we can ask questions or we can take a formal workshop.

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