Category Archives: disabled feminism

NE Women with Disabled People’s organisations (on tackling VAW together)

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NE2

with Caroline Airs

 

with Sonali Shah

with Sonali Shah

NE Women invited us back to speak :

A conversation between women’s organisations and disabled people’s organisations

Wednesday 12th Nov 2014 – MPH Training & Conference Centre, Gateshead NE10 0HW

with Chair’s Welcome, introduction and context for the event -

Caroline Airs, with

“Hidden Voices: Disabled women who are survivors of violence,” Dr Sonali Shah, Senior Research Fellow at the University of Glasgow and

Using CEDAW, CRPD and other human rights frameworks to tackle VAWG

(an overview) with Roweena Russell, Co-ordinator, North East [End] Violence against Women

and Girls Network and Eleanor Lisney, Director of Sisters of Frida CIC.

 

Domestic Violence Murder March #deadwomenwalking Sunday 23 November London

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2 women a week escape domestic violence in UK because they have been murdered

Some Sisters of Frida will be joining this – please write to claire@cctheatre.co.uk if you re interested in joining

Date: Sunday 23rd November 2014
Time: Meet at 1.30pm for distribution of ponchos & safety info Please allow plenty of time for getting ‘lost’ and finding us so we can set off on time
Short speech at 2pm to start the walk
Meeting Place: Grosvenor Square Garden, Grosvenor Square, London

Travel:nearest tube is Bond Street (7 minute walk) or Marble Arch (10 min walk)

This is a remembrance walk and we will be walking to represent the number of women killed in one year in the UK. I will have a Red Rain Poncho for each woman representing a murdered woman and a candle bearing a name – The candles will have their wicks cut off to comply with Health & Safety rules and will remain UNLIT at all times.

The Ponchos are one-size so you will be able to dress according to the weather - If you could wear black from the waist down that would help to get the visual look I am hoping to achieve – a line of red and black. If you have a red coat do wear it! The walk is 1.6 miles and we will be walking in silence at a slow pace to arrive at Downing Street for approximately 3pm. Please do not bring whistles etc.. Sadly they won’t let us all in! Six people will deliver a list of names to 10 Downing Street and that will be the end of the march. We should be finished by 3.30 – 4pm at the latest.

from Claire Moore of Certain Curtain Theatre (Facebook https://www.facebook.com/pages/Domestic-Violence-Murder-March-deadwomenwalking/731260833562881?fref=ts)

Report on Disabled Women’s Right to Occupy

Video

putney2
Putney Debate
Feminism, Disability and Activism

It was a brilliant night – thank you all for coming – Becky Olaniyi,Ruth Bashall, Michelle Daley, Janet Price, Lani Parker and others.

Michelle, Eleanor, Ruth and Becky

Michelle, Eleanor, Ruth and Becky

Michelle speaking

Michelle speaking

people in discussion in a group

some great discussions on that night

this is the link to the video

Feminism, Disability and Activism

 

Transcript

Video 1

 

Julie:

Welcome everybody to the Putney Debate. First a few things about housekeeping. The disabled toilet is down there at the end of the corridor and there are other toilets upstairs. We are going to be live streaming and recording for prosperity all the debates so when it comes to questions and comments, I will hand around a mic. If you come up just please be aware that you need to speak clearly and use the microphone. So, welcome everybody and I’ll hand over to Eleanor.

Video 2

Eleanor:

Thank you Julie. Let me explain a bit about the live streaming. Anybody who is online can be watching this and maybe contribute as well Inka? I’ve seen that.

Inka: Would you like that?

Eleanor:

I don’t know if anyone is watching. If anyone can put it on Twitter, I’ve put it on Facebook but I don’t know if it’s on Twitter or not. So, that would be great.

First of all I have to thank Occupy London for suggesting that we did this. At first I thought what have we got to do with Occupy London but then we thought this is a really good platform to do something that has never been discussed before. And we came up with the title last Friday afternoon over cake and that is why I think everything was done in a bit of a rush and anybody who works with disabled people knows that when you try and organise anything you have to give a long time and so I apologise to Pauline and all the deaf friends who came. We tried so many interpreters and we just didn’t manage. Well, we did manage to get one and we thought hallelujah but something personal happened and she couldn’t stay.

Anyway, let me tell you something about Sisters of Frida which is the host I think you call it with Occupy London for this meeting. If you don’t know yet, the title of this meeting is Disabled Women’s Right to Occupy. When we were discussing this, Ruth and I, we thought that instead of having a panel of us talking and then questions and answers, we would do it in a form of interview and other people could interject and join in the conversation. Also, we did it this way because this is entirely new and we have not done this before. This is not just disabled people or Occupy London or other people or groups. This is a whole mixture so we will see what comes out of this little melting pot. I should start with a little bit about Sisters of Frida. I always forget to introduce and do the proper introductions.

Sisters of Frida was started about 2 years ago. We sat in a lobby in a hotel as we didn’t have anywhere else to go and it seemed the right thing to do to have it over a cup of tea. There were 9 or 10 of us and we thought it was a really good idea. One of the people who was there was Martine Newel who was gutted that she can’t come but she has a really bad cold and instead of sharing it with everyone here she thought she would just watch it on the live stream and share her thoughts later. Another one has gone off to Liverpool and others are in the rest of England and so cannot come and that’s why we are really grateful to Occupy London and Inka for live streaming so that they can also join us.

Anyway, why Sisters of Frida? We are called Sisters of Frida and took a long time to decide that name because we didn’t want it to be specifically labelled in a jam jar sort of thing, you know? We decided that our role model should be Frida Khalo because she was an artist and her creativity was born out of her impairment and her disability but she was also a very feisty women, was bisexual, she was an activist, she was a lover, she was a real lover of life. So anyway, that’s how it all started. You can read it all on our website about what we do.

We are trying to focus on a few things and we are still coming up with what we are going to be and what we are going to do in the future but violence against women, the sort of gaps that disabled peoples organisations have not touched on. The sort of things that feminism in general have not touched on. Disabled women and feminism.

Video 3

Eleanor:

Let me start by introducing Becky who I met last week at Feminism in London and I had this thought and said that she would be a brilliant person to start the conversation this evening. I will do a bit of introduction. Becky’s 18, she is doing her A Levels, she’s amazing. She does swimming, tennis and reading and is studying English Literature, Psychology and Sociology and hoped to study psychology at university. She’s Nigerian, born in America and has used a wheelchair since she was a young child. Then her family moved back to London and she has lived here ever since. And, if this is right, she says this is the first time that she has done anything relating to disability.

Becky:

Yeah

Eleanor:

Congratulations and aren’t we lucky! Despite being in a wheelchair and having a visible disability this has a huge impact for pretty much her whole life. She says for her this is a testament to how much disability issues are ignored and go unnoticed and are not discussed even by people with disabilities. She’s becoming more aware of the power and inequality and how that affects her day to day activities since she was 16. OK, now I have a series of questions prepared and I think we will go from there if that’s OK?

First of all is there anything else that you would like to introduce that I haven’t already done?

I am not sure. This is so weird hearing my own voice! Well, I am Becky and I’m 18. I was born with Cerebral Palsy and Epilepsy and the list goes on. But aside from that I have a lot of different interests and I try to not let my disability get in the way of my life. I just power on and try to be as normal as I can. And, yes, that’s pretty much it.

Eleanor:

I don’t like labels and I think that most of us have multiple identities. For example I am a disabled Malaysian Chinese woman, British by marriage. Being a wheelchair user, impairment is pretty visible, and as a women of colour. So intersectionality is important to me.

What identity, if you can answer this, is the most important to you? You have said all that before or do they have equal impact on you?

Becky:

That’s a difficult question to answer. I don’t think there are separate identities. I think that everything that is a part of me becomes one identity. I think the idea of having separate identities is a bit weird because you are one person and all these things make you. So you are not just black or just gay or just disabled. You are your own person and you are made up of all these different aspects.

Eleanor:

Yes, but I think then my question is how do you find that these different identities, for example, I know that my Chinese community don’t really accept disability and I have problems there. You’d be hard pushed to find many BAEM (Black and Asian Ethnic Minority) disabled people’s organisations. There is one called National Equality Council. So that’s why the question but I think that what you have said is quite fair as I don’t think I ever thought about separating the strands in my life.

In what you said earlier in your bio, you sort of said that from 16 you feel like you have been a sort of activist. Do you want to elaborate on what shaped you on that journey do you think?

Becky:

I am not really sure I guess. I just started spending more and more time on the internet. Then from there I started learning more about activism and when I went into sixth form I kind of got my own identity and there were less rules and less restrictions. I sort of branched out and did my own study and reading.

Video 4

Becky:

And from there it really inspired me to do more and more and now I am here.

Eleanor:

Great. I think I asked because one of the themes is activism and that’s sort of part of Occupy London as well. Its great because one of the reasons I asked you is because it’s pretty important to Sisters of Frida how can we help young disabled women like yourself? So how we can help women like yourselves to show you the way or to learn with you etc. We were both at Feminism in London last week and we both remarked on the fact that there were not many visible disabled women there and I can see that Angela is here. She was at Feminism in London too. Thank you Angela for being here. We were both saying that feminists haven’t really included disabled women or women of colour in their discussions. What would you have liked as sort of support from other feminists? You know, from your experiences there because we went to different sessions?

Becky:

Well I kind of chaired a session at Feminism in London and one of the women there said something that really struck me. She was like, before I met you I never had any idea that there were black people with disabilities because you only see white people with disabilities. I was like, well that’s an interesting sentiment, thank you. I would just like for a feminist to acknowledge that there are people with disabilities that are also women that are also feminists. We are not just there in our own little bubble […….feminism] because that’s counterproductive.

Eleanor:

I can’t believe she said that! [laughs]

But that is great.

Sisters of Frida was set up because we felt disabled women were left out of the whole conversation of feminism. So how should you think, I mean this might be a tough question and might go on forever, but how do you think an intersectional network (an intersectional network that we have been discussing) would work? What support could it give you? What support would you like from it? Or what could you do with it?

Becky:

I think to have an intersectional network you have to first acknowledge the fact that there are women that have disabilities are [……]also? human beings and that having a physical disability doesn’t dull your intellect and even having a mental disability doesn’t mean that you cant have your own opinions. And before intersectionality can happen, this has to happen. And I think an important thing for intersectionality is showing young women with disabilities that just because you have a disability it doesn’t mean that you are a freak. I only have one friend my age who has a disability and she tends not to acknowledge it. Not that she is ashamed but she doesn’t want it to be something that is shared with other people and I think that is a serious problem because if people don’t want to be open with their disabilities, how can we meet people who have disabilities?

Eleanor:

I think that is perfectly fair. When I was your age I was in total denial. I just thought that I need to work harder and get on and I’ll be OK.

So, the last question here before we go on to Ruth is (pause). Well I should say, we started with Becky because its seems good to start with someone who is just starting on her journey to intersectionality and feminism and disability activism. And then going to Ruth who has been there quite a long time. Been there, done that, got the t-shirt.

So this next question is a bit more sort of focussed on something else. Disabled women are said to be twice or even three times more likely to encounter domestic or sexual violence. And one young member of Sister of Frida said that she was doing workshops in Strasbourg with young disabled women and that some were not even aware that they had been inappropriately touched because of their impairment/disability.

How do we get awareness to disabled women so that they can first of all be aware to complain about it, where should they go and how do we even start because violence against women and domestic violence is very much in the news at the moment but I think disabled women don’t seem to be mentioned.

Becky:

At my sociology lessons at school we have been looking at gender and crime and we hear all these statistics about how one in six women experience domestic violence every year and one in ten women will experience it in her life. And a certain number of women of colour have experienced domestic violence but there is never anything about women with disabilities so it kind of comes across that women with disabilities are not able to be domestically abused or sexually abused and this is a total myth and I think that this needs to be dispelled so that you can teach people that what someone is doing to you is wrong and its not just something that you should expect just because you have a disability.

Eleanor:

(clapping)

 

Fantastic. Thank you Becky.

Is there anything that you would like to ask? Or talk about anything I left out?

Becky:

I would just like to say that this is the first time being in a room with so many disabled people and woohoo!

 

(Laughing and clapping)

Eleanor:

I think before we go to questions we should ask Ruth the same questions.

OK.

Video 5

Eleanor:

This is an introduction as there may be some of you who do not know her. Ruth runs Stay Safe East, a disabled people’s organisation or DPO for short which supports victims and survivors of all forms of abuse including domestic and sexual abuse and hate crime. They’re unashamedly feminist in their approach and work to the social model and so work with any women or even men who are disabled even if they don’t identify themselves as such. They have worked with over 200 clients since they set up 3 years ago so they have a lot of case work evidence to offer. A large part of the job is around policy and strategic work in London and National level and she has also been involved in European research. She found that the barriers faced by deaf and disabled are many and wide ranging. Different forms of domestic violence can [….. ] for disabled women. They believe that safeguarding systems at times actually increase the risk and at best does nothing. It makes her think of Sojourner Truth who said “Ain’t I a woman”. Lack of accessible and appropriate support, services rampant with discrimination in the justice system and so on and so on. I was told to keep it short. Ruth, welcome. Would you like to introduce a bit more about yourself or have I missed out anything?

Video 6

Ruth:

I suppose it’s partly about your question later about activism but I didn’t land in this from nowhere. I have been a feminist all my life and disabled since my thirties. And was not one of the earliest women, I think women like Kirsten Hearn and Pat Rock who were involved in trying to make the feminist movement more inclusive I think deserve a bit of credit. I was a late comer to this but there has been a strong feminist strand of disabled women who have tried to bring the two together. But I think that there is a new generation, not just in age, but in chronology if you like, of disabled women who are starting to raise their heads above the parapet again and its fantastic to be here with Becky and also Eleanor who has been a strong part of creating Sisters of Frida. We can talk about activism later.

Video 7

Eleanor:

We haven’t talked about you.

Which identity is the most important to you or do they have equal impact on you?

Ruth:

I think like Becky, to me I’m me, I’m Ruth. But you cant divide yourself up into a series of identities and of labels. I am a lesbian and a grandmother now. If you had asked me this 20/30 years ago I would have said that I am a lesbian mother probably before anything else. I’m a disabled women, I’m lots of things. I’m a gardener, you know. Those labels are not the only thing but the important thing to me is to be recognised for the totality of who we are and not be asked to be just disabled. That was why I was quoting Sojourner Truth earlier. The whole idea that “as black women, aint I a women, as a disabled women aint I a women too” and that disabled women were seen as genderless and you even have so-called disabled toilets. I remember going to a disabled women’s conference in Germany and there was a group of women who did a skit about this. They said that toilets have three genders; male, female and disabled. Of course, we didn’t fit any of those but that’s another story. But I think that whole issue about identity is a complex one. I came from a generation where we chose a identity very consciously not only as women but very often for many of us as lesbians. And you still find that people will talk about LGBT, they will talk about gay but somehow the word lesbian is far too sexual, far too direct, and far too obvious.

You know, I think that its complex and it depends on the context, but in the end I am me and those labels are only a small part of who I am. But I want to be recognised for who I am. I don’t want to have to leave part of me on the doorstep and apologise for part of me and that includes having to apologise for my sexuality, for my life history and for being a women and being disabled etc. That’s the important thing that we don’t have to apologise but that we are also welcomed and recognised and that the experience we’ve got is recognised and taken account of in how anything is organised, done, thought about etc. And that’s the problem. I think to me, intersectionality is a new word. I had to look it up in the dictionary. We talked about multiple oppression. But it’s something that is describing a reality that is more complex. And I think you know, to me I talk about inclusion really but in the end it’s the same thing. It’s about recognising that our differences bring us together. I can’t remember the quote from Audrey Lord but there is a wonderful quote about not being afraid. “It’s not our differences that divide us but the fear of our differences” I think is the quote. I think that says it all really.

Eleanor:

If I may quickly add something to that. I was very honoured that I got to meet Rashida Manjoo who was the special reporter for sexual violence and she came to the UK and she mentioned that one of the problems is that there is gender neutrality.   So, there is a problem with disabled people’s organisations as we talk about disabled people but we do not talk about disabled women. So that’s that huge gap.

So, why do you call yourself an activist? I think you do call yourself an activist and what has shaped you in that journey?

Ruth:

I mean I would call myself a human rights activist. I think (pause). It’s funny, I was thinking about this on the way here and I think the thing that shaped me was probably my mother who was a strong feminist, who was a communist. But also the experience of growing up as a foreigner not long after the war in France where I experienced a fair amount of xenophobia including being tied to the tree for burning Joan of Arc which was a strange thing but in those days the super nationalism of Europe unfortunately was starting to a take hold again. And, very early on being aware of anti Arab racism I think more than anything else. And of stuff that happened in the early 60s when I was still a child when a demonstration of Algerian migrants in France (it was at the time of the Algerian Move of Independence) were set upon by the Police and 200 people were murdered and thrown into the river in Paris and it still affects me. It was hushed up and my mother had a friend who was in journalism and I can remember them sitting around the table talking about this. And for me, as a child, that was an impression that really stayed in me and in my memory and it still does. And the injustice of the silence around that. And I think the silence more than anything else. The mass murder of a group of people who were simply fighting for their right to self dissemination.

I was of the generation of 1968 in France, so I dutifully went off and threw paving stones at Police Officers who retaliated by raping a friend of mine. And I think that was probably seeing the violence against women and I came to Britain in the early 70s when the Women’s Movement was being born and found a movement that, I think in the early stages, was very local and very much turned to America and the States because that was the inspiration but gradually started to become more international.

For a while I was on Outright Women’s Newspaper who were a socialist feminist women’s publication at the very end of it. It’s not my fault that it closed, but at the very end of it. So, I think a lot of the kind of perspective that I have was an internationalist one because of my experience and my background.

And I was involved in trying to set up a women’s centre, lesbian mothers network, trying to fight for the right to keep our children because at the time if you said you were a lesbian and a mother that was something that (pause) the two words don’t go together. And interestingly now I find myself in the same situation working with disabled women now where the two words don’t go together where there is an assumption that if you are a disabled women you are an unfit mother. Hasn’t changed that much. It’s just the label that has changed.

I was very much involved in anti racist things and trying to stop people being deported and so on. And involved in community politics so I have always been a grass roots activist in my own neighbourhood in East London and it’s been about that. And gradually when I became disabled I got kind of dragooned into the Disability Movement by a couple of friends who basically said stop feeling sorry for yourself and get on with it, there is a demonstration to organise. I was used to organising demonstrations so I did and I haven’t looked back.

So, I think it has always been from a human rights perspective and from an international point of view and I still keep links with people in other countries. I think that’s very important in terms of understanding the experiences of disabled women for example. You know, where we are starting from is not the same in every country. Our experiences of impairment are different. And lots of other things really. And I suppose that’s my background in activism.   And it’s fantastic to see a new generation of feminism coming along who have got that international perspective.

Eleanor:

Thanks

Video 8

 

Eleanor:

Here maybe I should add that something that Sisters of Frida have been doing is getting involved with UN instruments like CEDAW which is the Convention on the Elimination of Discrimination against Women. Eleanor and I went to Geneva last year as we felt it was important to have a visible presence of disabled women and now we are also involved in the writing of the shadow report for the convention of rights for disabled people. And also we are very honoured that organisations for social justice have invited us to go along. Perhaps because there are not that many organisations of just disabled women.

So, when were talking we said that it would be good to have some kind of network set up from this. This would be the sort of nucleus to start off something perhaps. What would you like to grow from this? Or is that a difficult question?

Ruth:

I think it depends on the context and depends what you are doing.

I just want to go back to something which I forgot to mention and that is important. I was one of the founder members for the Campaign for Accessible Transport and it was the first, no second, direct action groups who campaigned around accessible transport and I think that this kind of overlaps with your question as it is about how we do stuff. I learnt an enormous amount from doing that because it was about trying to work together to do direct action which is pretty scary particularly if you have never done it before. I hadn’t done it as a disabled woman. And trying to do it in a way that is inclusive and we did manage to develop something which gave people a choice about how they got involved, what they did, whether they chained themselves to a bus, whether they got themselves arrested. It’s not rocket science and it’s probably not great news to those who are now involved in direct action. But it was quite ground breaking and it had an impact way beyond its number of people. You know, there were 100 people on the mailing list but you know you can block the whole on central London with 50 people particularly if they are wheelchair users and at the time the police didn’t know how to arrest us. There weren’t any accessible police stations in Central London. I’m afraid there are now so it doesn’t work anymore! (laughs). They’re a lot better at it now. I must admit I have been an advisor to the Metropolitan Police. But I didn’t tell them how to do some of it I must say. I kept some of it quiet.

But, I must say I think in terms of networking the important thing is about how it has changed now. There is a lot of stuff online; you know I’m useless at Facebook. I think that the kind of exchange of ideas, impressions, thoughts, trying to educate each other and trying to understand how we develop inclusive networks is really important. There is the capacity to do that because we can do a lot of it online and you don’t have to be in the same room. And you can cool down before you have a go at someone. All those feminist conferences where we kind of threw things at each other (laughs). I think it’s really nice and useful to have a bit of time to think.

So for me personally, because I work on violence against women (and disabled men occasionally), it’s having a network which is about reinforcing the feminism of it. The gender based stuff. The inclusive stuff. The intersectionality which actually allows me to put things in context.

On a personal level the research I’m involved with on European research on violence against disabled women, the fact of going to Vienna last summer and actually being with a bunch of feminists, some disabled and some not, who were working on this issue and thinking about the issues in great detail. Some were activists and some of the women were doing some extraordinary daring stuff around sexuality in places like Austria. A country where thousands and thousands of disabled people are still locked up in institutions. They’re still building institutions. And she is going into institutions to talk about sexuality with very little support. Just being able to be inspired by what other people are doing and also to learn from that to energise each other I think is really important. And that includes, you know, I think there is a need for a network of disabled women but there is a need for a wider debate and a wider exchange of experience and expertise around activism. It is really needed but in order to do that we need the mainstream events to be inclusive. You know, I am partially deaf, if at a big event I don’t have subtitles then I may as well not be there. I would be in the same situation as Pauline. Those sorts of things are really important and we have to think about that before we even get together. But from that point of view the internet is really useful. Anyway I will shut up now.

Eleanor:

Thank you.

Video 9

Eleanor:

I think here there may be a few of us that are involved with DPAG, well some of us also do the direct actions which are a little bit more hairy these days as Occupy London have also been involved I think in live streaming and supporting and I agree with you that we work with unions and with all sorts of mainstream.   And I think that is exciting and I think that like tonight we said that it’s for men and women, disabled and non-disabled as we all have to work together and it’s a battle because fighting for access and you think that should know about it and I am sure you know, for example Pauline and her friends said that I should know about and I do know about it but sometimes it is a bit difficult to all get organised. I mean we were supposed to be upstairs with a platform lift and I was having nightmares about the platform lift breaking down and all of us stranded upstairs with nowhere to go (laughs). And you know, that sort of thing is always a problem.

Now, on the schedule there should be a break but I’m thinking that maybe it’s too soon for a break? And I was wondering if people here would like to say something so that we can think about it over the break and then come back and talk a bit more about it. Maybe I should introduce Janet Price who has come all the way from Liverpool (pause background talking).

I was thinking that we should have some questions and then have a break and come back and then… What would you like to do? Oh, alright then, shall we have a break? I’m afraid we did not manage to set tea up but there is a cafe that I think is still open (background talking)…. Euston station is just across the street. Is 15 minutes enough? Or 20? OK. But there might be queues for the loos too. I don’t know. I know Euston station. I even slept in it once when I was made homeless (laughs).

So, OK. I think we shall have our break then.

Video 10

Eleanor:

It’s not so much a question and answer thing here. I think we wanted it to open up more into a conversation and there are people here that would be great if they are willing to contribute as I know they have got great stories and etc.

One of the people that I invited and was very happy when she said that she would come down from Liverpool, all the way from Liverpool, is Janet Price and also [Angrid]. And I don’t know if you guys know about the DaDaFest but she is part of that as well and has done some great work about disability and sexuality )and if you want to continue about what we have been talking about or bring in your own experiences or thoughts that would be great Janet.

Janet:

Am I alright here or would it be better if I held it (the mic)? I’ll just go a bit further back.

Well, thanks so much. I have been eyeing Sisters of Frida online for quite a while thinking feminists, disabled, feminists, let me at them (laughs). So it is really lovely to be here. I became disabled about 25 years ago now and I have been an active political feminist lesbian and for me to suddenly feel like I had lost a whole community which is what happened so many people disappeared from my life at that time and I had also moved cities and was hunting around for things to do and actually what I fell across was not other disabled feminists but disabled representation and the politics behind it and that was when i got involved with DaDaFest. One of the things that has struck me more and more as I have been involved with DaDaFest (disability and deaf arts festival)( currently about to launch our festival for this year in 4 days time check out online www.dadafest.co.uk and we are streaming some stuff but there is going to be a lot of really good stuff online. So anyway, that’s the politics and the advertising). What it has made me realise that being part of an organisation where access is key and representation of disabled and deaf people’s lives as they choose to represent them whether it’s through plays or through poetry or through films or through statues and we are very clear that we are not trying through DaDaFest, this isn’t about community based art which has its place and is really important and we support that too but this is about quality representation that tells people about how we want to be seen as disabled people and so it’s really exciting work and its developing more and more all the time. I know you got to see a lot during the Paralympics down in London and there was a lot of really good work going on and being shown here at that time. Well we get a big festival of it every 2 years in Liverpool and it is wonderful and it’s going national and we are now going global so we have ambitions.

And one of the things, that international ambition, has I think been really close to my heart because a bit like Ruth I have always been an internationalist. I mean, politics taught me that I was so ineffably middle class and able and it was about recognising the privilege of that and about the struggles of other people and the way that I could be committed to working alongside them and the battles that they were fighting.

And one of the real joys of my life is that I have been able to be very close to and work alongside disabled feminists in India. And non disabled feminists and watch the interactions and the issues that they are fighting together and how the work that has gone on between disabled and non disabled feminists in India has been something that has taught me a lot about the way that movements can start to come together and share issues. There is no sense in which they would say it’s perfect but there have been a lot of lessons that they have tried to move and work together. Now the organisation that I have had the luck to work a lot with is a feminist, human rights and sexual rights organisation called CREA and they do a lot of training of young activists. They do a lot of political representation and challenging the ways of the forms of political representation around sexuality. They have also started thinking increasingly a lot around disability and I have been working with them for 10/12 years now both doing trainings and supporting the training of other young Indian activists so that they can go out and do similar sorts of work.

It’s increasingly a very intersectional organisation and one of their greatest events that they ever held was a violence against women conference. And they held it up in Nepal and they held it in Nepal because it was a South Asian conference and they wanted somewhere that would have access for women using wheelchairs and none of the big hotels had more than one room so in Nepal they found a hotel that was just in the process of being built so Geeta, who heads up CREA, and is a force to be reckoned with, went up to Nepal and did this deal with them that they would bring the conference there if they built another 4 rooms that had wheelchair access and so they did. So you suddenly got this really good accessible hotel in Nepal and its about using those moments and that meeting had disabled women, lesbians, trans women, women living with HIV and sex workers. There were conversations going on that were quite extraordinary. You know, disabled women for whom it was their first time that they had been able to fly somewhere sitting next to a sex worker. And the sex worker saying “I didn’t know that disabled women had sex” and you know, people saying “I’ve never sat next to a sex worker, what’s life like for you?!” And so conversations happening that just don’t happen in other places and bringing together groups of people for whom the experience of violence was a common one and they had backed the conference up with some serious research with these groups beforehand so that there was a lot of participatory research that fed into it and then there was the actual experience of bringing together people and letting them have those exchanges with each other and to share those moments and really talk to each other.

And it seems to me that there is an ambition there that I think we need to claim and to really look at what is being done and the types of things that can be done if we really put some energy, some power and some thought. Just the energies behind all the movements that are here this evening. You know, all sorts of magical things can come out of it.

And just looking at the sorts of things that have emerged over the years from CREA trainings with activists around disability. A woman who was a feminist who did a lot of work around training, around sexual and reproductive rights and anti violence work, she had some contact with a group of deaf women. She went in and shared with them all of her knowledge that she had gained from working in feminism and that group of deaf women taught her an awful lot about what being a deaf woman facing violence was like. But she also learnt a lot about she needed to change her forms of presentation so that they were more accessible to a non hearing audience for example, the sort of things that she needed to be aware of. And, that you know, that we need to be aware of in an audience like this because it’s not just simply the women who are deaf and use sign. It’s the women who use hearing aids or the women whose hearing is dropping. You know, there is a whole series of protocols that we need to get our heads around. I think I have been trained by the best in the business because DaDaFest are just so on the ball about it. It’s crucial and I think that we have to be able to admit our ignorance and learn about what we need to do about access because all of us are still doing it so badly. And this isn’t getting at you Eleanor. It’s the problems of people not recognising the money that we need to do this properly, and all of the things that flow from there. So, yes, just to finish the story about the group deaf women. They have now been doing trainings around violence against deaf women which is of horrendous proportions as I think it is around most of the world including this country. But they have gone out across through India and you meet them and they are so delighted as they say they are being invited not only to North India and South India and a group from Pakistan wrote to them the other day and there is a group in Nepal that want them to go and visit. Those sorts of South Asian links that have built up and are very strong which means that they can now network much more broadly than they ever thought would be possible for them and they can do it in a way that fits with their sense of themselves as deaf women and increasingly as deaf feminist women. So that’s just one of many examples I could share with you. And I think that what has been exciting is that a group who have a real influence on training activists and really sharing skills with them have taken disability on as a serious part of how they function as an organisation. So that spreads out and begins to have an impact on all the organisations that they are working with which now involves a lot of the young activists working across India.

Video 11

Eleanor:

Thank you that was brilliant.

One of the things I have been meaning to talk about is that I started saying how Sisters of Frida was started but I didn’t actually say that it really started when the Million Women Rise invited me to go and speak at their march and me and Michelle Daley we spoke to 6,000 people at Trafalgar Square about violence against disabled women and from there, for me, I discovered that there is that gap. Following that a couple of weeks ago Michelle and I went to a premier of a film called Margarita with a Straw and that brings it back to India because I was blown away by that film and the sort of the brave intentions of Shonali Bose who was the editor and even more wonderful it was based on the life of somebody that both of us knew, Malini Chib, who didn’t come tonight (she was invited).

Michelle, do you want to come in as people have heard my voice and you are a very good speaker?

Michelle:

You carry on.

Very quickly about this film. It is truly international, intersectional. It was about a young girl who had cerebral palsy in India and she got a scholarship or her parents sent her off to New York to study because the access in Mumbai wasn’t so good for colleges and there she sort of went into a self exploration, self discovery of sexuality. She discovered that she was bisexual; she met a blind girl at a protest and got into a whole load of things you know. It is wonderful to go into a film about disability and sexuality and have the words “fuck the police” in one of the scenes. It talked about the relationship with her mother and her parents and its the whole kind of politics, the sexuality, the relationships of being disabled and being a woman who is full of curiosity. It was a great, great film. Michelle, do come in….

Michelle

I just want say that I was really excited when Eleanor told me that we have Becky coming to speak. She was like “wow, we have a young woman , she’s articulate, she knows her stuff” and I said “alright, alright you’ve sold enough”! But when I met Becky I thought you know what she is good. This is exciting as we have some fresh blood coming through. And I think that having Becky on stage is fantastic as we do need more new blood as its the young generation that we need to be working on to come through the doors and give new ideas because your experiences are so different from our experiences. You have been mainstreamed and the fact that you have said that this is the first time you have been in a room with disabled people says a lot.

My experience was that I was running away from disabled people when I was 18 because my experience was segregated in a special school and I think that there is a lot we can learn and I think that we need to make sure we tie Becky now in a different way. There is a lot that we can learn from the new generation of young people and Becky’s experience doesn’t really reflect every disabled people out there as many young disabled people don’t have the opportunity to go to a mainstream school. To have this experience, that people like Ruth who have campaigned long and hard before myself, for disabled people to have what Becky wants. Becky is the dream that we wanted when we think about young people’s experiences. What we might not of had the opportunity to achieve what Becky wanted but the fact that we can see the fruit of it is fantastic. What we want to do really is to nurture what Becky has so that she can make it better for the generation after her. And I think there is so much that we need to be able to find a way of working with people like Becky and other young people to say how do we bring the new blood in? How do we work the new blood because their experiences, and we have to be realistic, are different to our experiences? When we were growing up I thought to myself there was no such thing as accessible toilets. You had to plan your day. When you left your home, whether you drank, what time you drank as there was no such thing as this. There was no such thing as accessible buses, dropped curbs. There was a lot more logistics on how you planned you day just to do day to day things. For Becky she won’t understand that. If she wants to get on a bus she just gets on a bus. But that wasn’t a reality for many disabled people. I know I keep saying that I want to see Becky at more things and I think we can learn from people like Becky.

Another thing that is important, and Eleanor I think you touched on it, is that we have social media. This is a great way to reach people who have not been here today and I think we are talking about domestic violence against disabled people and I think that there are so many voices that couldn’t come here that are being abused and they are being abused for a number of different reasons and they may not know about the supports that are out there. People who are refugees who are fleeing violence from their countries and even people who don’t have status in this country. Having to live in certain conditions. I was talking to Lani earlier about how we reach the voices that may not even know about our groups? It is important that we find ways and using certain technology, saying technology not everyone has online access. People who are living underground in different ways. For me it’s how do we reach them? Not everybody has the opportunities that we have. People could define us as privileged disabled people.   I wouldn’t define myself as privileged but in many ways we could be for people who can’t access what we have access to. I think that this has opened a discussion and I think that it is great that we are live streaming so that someone can record it and send it off to other people to show there are groups of disabled people out there. Also, something beautiful about today is that we have different faces in the room, different colours in the room. When I started out many years back it was often “we need a black person at the table” and that used to really annoy me and I would say I’m not coming, why should I? The fact that I had been invited because I was a black disabled woman…hell, no. You invite me because I am who I am. WE need to think about how we structure certain things when we speak to people as I know for a fact that someone like Becky who is young is not going to be having “come to the room because we need young black disabled people around the table.” It’s not right to invite people in those ways. So there are lots of things to think about the way we do things and still I get invited “can you come to an event because we don’t have any representation from certain groups?” Yes we want to have diversity but don’t invite me just like that. We should be thinking about it in different ways.

OK, I think I am rambling. But I think that this is a great platform to get going. Thank you for organising it.

Video 12.

Ruth

I think that one of the things we got to remember, and I think in terms of activists, we were just talking about the independent living allowance being abolished, that’s probably going to finish off this generation of activists. It has funded PA support for the entire disability movement.

There are young disabled people now that can’t leave home, who can’t

get involved in stuff because they get only 10 hours per week support.

They can’t get out of their front their doors, physically they don’t get

access, simply because everything is cut back. I think that if you are an activist, fighting for our basic rights to services, it’s not sexy, it’s not something that politicians bother a pee about because the disabled vote is not a collective vote that people have an awareness of, it’s invisible, it’s what happens to people when they are in their own homes, particularly if they can’t get out. But actually this is a key human rights issue. People I work with are fighting to get basic support for someone who has survived domestic violence, who survived raping institutions, who is traumatised and is still being told they don’t deserve – and this word deserve keeps coming back – basic support so that they can get out of their beds, that is basic. And it’s not out on the street, because they can’t get out of bed to go on the street and we need to fight for that as well. We want to see a new generation of young disabled people, but we need to fight for their right to be there. Sorry to put a pessimistic angle on it, but I think it’s really important.

Having said that, there is a new generation of young disabled women

out there whose awareness of themselves as young women is really

strong. And at that point I’ll stop talking about Becky and hand her the microphone.

Video 14

Becky

I think it’s really exciting being considered to be part of the new

generation. I never considered myself like that, I always think of myself as an individual. I would like to say thank you to women like Ruth, because it never occurred to me that there were disabled women before me that didn’t have the opportunity to go to main stream school. It’s really important all the work that you have done, if you hadn’t existed, I wouldn’t be here. People like you need to be acknowledged, even you kind of downplay your hard work what you have done, but I think you have done a lot for the disability movement. And I would like to meet a lot more women like you because you don’t get a lot of attention.

Video 15

Ruth

Think also of other people who have been instrumental for getting

young disabled people into main street education, that has not been my

area. That has been so important in terms of inclusion in disabled and

non disabled people growing up together, but also in terms of disabled people getting a decent education. The quality of education in special schools ain’t what it should be, let’s put it that way. And a segregated society can never be an equal one.

We are part of a movement, it’s not over yet. I was interested to hear

what you were saying about India. There’s a sense that the second wave of feminism kind of died back in the more wealthy countries and actually women in India and in Latin America have taken up the

mantle and that has continued, and in terms of disabled women that has been the same. Maybe it has come back to us full circle. I would like to get into contact with that group, I would be really interested in what they are doing.

Video 16

Eleanor

We’ve been talking about the next thing we are doing to do, with Sisters of Frida, is screening a documentary of 4 disabled women who are talking about their sexuality, we’re hoping to organize that event, but I am still looking for the time to write the funding for that. Back to Michelle..

Michelle

This echoes what Ruth said, I think it’s really important, as long as we

have segregated services, we are never going to have inclusion. We have to continue the struggle and fight for disabled people to recognize that young people do need to be aware what segregation really means. The moment you have a job you tend to forget that you have to fight for our freedom. You know, because we have a book ….. accessible …….

It doesn’t mean we have achieved our freedom, because there can only

be one wheelchair user on the bus. We do really need to take people

back to the basics, to understand look we haven’t achieved full equality yet.

And also, and I am paraphrasing you Becky, questions about which

identity is important to you, I’m so glad that Becky said, well, they are

all important to me. I am who I am, that is all important. That’s

fantastic and the moment we start compartmentalise different bits of

ourselves, that’s wrong in it self. We need to be recognized for who we

are. This is just a platform, we need to keep going.

Eleanor

To continue from what Ruth said this is the beginning of something

great, let’s hope that it starts tonight. Janet, did you want to come

back?

Janet

Are there any questions on the floor?

Man in audience

You spoke about the million women march in India, we are very

interested in that in Occupy London, it was great to hear that you

actually went there and met some of these amazing women. It’s

interesting that it is women, Julie, you would know more about that.

Women now make up 70% of farmers, that also means that they are

more liable to have accidents and incur harm or injury. But they are

supplying the world with food we are eating in London here today

which is very unacknowledged. But as I said, it was wonderful to hear

that reference, I wasn’t aware that any people from our world, the first

world, the western world, attending, so I’ld like to hear more about

that.

Woman in audience

Can I just say one comment for OT’s. Recently I was teaching on a

course for Occupational Therapists. At the end I said to them, our

identity is more than just our disability, it’s getting people to see us

beyond our disability, see us as we say: we are women, part of a global citizenship. We are much morethan our diability. We have to keep reminding them our disability is not our identity, it’s just part of what we are.

Video 18

Man in audience

I was given a diagnosis by a doctor, another doctor came along and

said, the diagnosis was probably wrong. But, you know something,

everybody is disabled – I’m using that word very loosely – if they think

they are perfect. The world is disabled by not being sensitive about

other people in the world. My problem is your problem, everybody’s

problem should be everybody’s problem.

On identity. Nobody here can know their identity until the world

understands its identity and the worlds identity needs to incorporate the potential identity of every creature. And everything that happens on the planet. We have a big problem about identity, the world actually does not know what it is. The politicians who rule this world like gods with tridents and blazing with fire, they do not understand their own identity, they do not understand the functionality of the world, what the world should be about. Everyone can enable the world to discover its true identity, by empathy, by caring in a really authentic way. Sorry if I went on a bit too long, it is about passion and passionate words.

Ruth

Thanks for that. There’s a lot of problems around the word disabled

and about the concept of disability. I think it’s a complex issue and I

think everyday language uses the word disabled as a negative thing,

crippled, blind to the truth, deaf to reality, all that kind of stuff. I’m

not going to give you an advanced course in disability and equality and the social model. To me being disabled is about your pride, it’s not something to be ashamed of, that is not to say that the reality of our impairment which is about our conditions, is not sometimes difficult.

But it’s not the only thing about me, I can peel the carrots, it’s not the

main thing. But who I am, part of my identity of being a disabled

woman, is part of who I am, not having to apologise for being a disabled woman to me is so crucial to our identity as a disabled women, not seeing the fact that our bodies, our minds, our ways of seeing the world happen to be are different than other peoples. And that is not a problem, and I think we were trying to get at that, its absolutely crucial to our sense of pride, being able to live our lives as disabled women, the fact that we might have to do things differently, that we pick up our dinner with our feet not our hands, we might happen not walk but wheel, the fact that being blind is not a loss but who you are, as long as we perceive disability as less than, something that is a loss, that is a shame, it’s so sad. ‘Isn’t it wonderful that you speak out ’, because you are a disabled woman

Yes, on one level it’s wonderful because we face so many barriers, that we are able to speak out, on another level, its just life. We are what we are and in fact we are very proud of being a disabled woman. That identity is something to be claimed, so many of us are actually ashamed of who we are and we feel we have to apologise for ourselves. As a movement if we can create a space where disabled people, women in particular, can be themselves, that does involve doing practical things, but also talking about ways of thinking, doing and knowing that together we are a heck of a lot stronger.

20.

Eleanor

We talk about disabilities not just our identities. This may be the

appropriate place to say that our wonderful friend Kirsten can’t be

here, because she is, what do we call it, she is celebrating her, what do

you call it?? I don’t know what the word is, paganism? O yes, she is a

witch! (cheers from the audience) Doing the rights, whatever you do as

a witch,… that’s what I want to end on, we don’t have one identity,

sometimes a thing can be more important than just being disabled

women, we have other roles to play.

Thanks you so much for coming, and for the providing of the life

stream and thank you Occupy London for providing the space and the time. Disabled women’s right to Occupy!

Please put your name down so we can let you know what we are doing

(with help from Lani Parker and her PA – many many thanks, to Frieda Van de Poll too)

Many thanks to Occupy London and inka stafrace
occupy london  & polly tikkle productions

Disabled Women’s Right to Occupy – Friend’s House, London 31st Oct 7-9.30pm

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putney2

Feminism, disability and activism

Interviews with Ruth Bashall (Stay Safe East), long-time activist and front line work on disability hate crime and violence against women, and others to be confirmed. Chaired by Eleanor Lisney, founding member of Sisters of Frida.

With Michelle Daley & Martine Miel (Sisters of Frida) and Janet Price (DaDaFest).

New confirmed interviewee – 18 year old Becky Olaniyi.

Questions on feminist perspectives on issues of sexuality, disability, and social justice – disability and sexuality, queer crip politics, race, violence against women, the right for disabled women to occupy a safe space on their intersectional issues

Feminist Library, Gail Chester will be there with a stall.

Venue: Friend’s House, 173-177 Euston Rd, London NW1 2BJ

31st Oct , 7 – 9.30 pm

(https://www.eventbrite.com/e/disabled-womens-right-to-occupy-tickets-13856072887)

sisters of frida logo                                                        staysafe

ww.sisofrida.org                                                   @sisofrida                    #diswmnoccupy

Sisters of Frida at the Showroom in discussion about identities : Saturday 27 September 3–5.30pm

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at the showroom: people sitting on the floor

 

There is BSL signing 

Sisters of Frida have been invited by Patrick Staff to public discussion events exploring disabled and queer identity, austerity, illness and flexibility. Particularly on Saturday 27th where we will be leading it.

Since summer 2013 Staff has utilised a range of choreographic strategies in order to explore and question how bodies are presented, produced, represented and assessed within the fields of performance, healthcare, technology and labour. This has included research at the Trinity Laban archives; discussions with groups of practitioners, researchers and activists; and physical workshops with other artists, members of local groups such as Opening Doors London (which supports older generation lesbian, gay, bisexual and transgender people) and DreamArts (a youth performance group), as well as public participants. From 20–28 September, Staff will display a series of large format posters on the exterior of The Showroom’s building which will feature an interview between the artist and one of the project’s collaborators. A series of public discussions, led by invited practitioners, will respond to the text in relation to their own work and lives. Invited guests will include the research group Manual Labours, choreographer Hamish Macpherson, members of Opening Doors London and the disabled women’s co-operative Sisters of Frida.

The discussions are free and open to all and will take place outside The Showroom gallery building, 63 Penfold Street, NW8 8PQ on:

Thursday 25 September 3–5.30pm: discussion led by Opening Doors London

Friday 26 September 6–8.30pm: discussion led by Manual Labours and Hamish MacPherson

Saturday 27 September 3–5.30pm: discussion led by Sisters of Frida

http://www.theshowroom.org/programme.html?id=1829

Disabled Beauty Pageants: Be Careful What You Wish For

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women in long gowns in wheelchairs with banners on them and tiaras

This week I came across an interesting article exploring why we don’t hear about disabled beauty pageants in the UK. Having never heard of them before, I took to Google and quickly discovered Miss Wheelchair America, Miss Amazing and Miss You Can Do It, to name but a few.

Their missions vary from building confidence and encouraging inclusion to providing the opportunity to celebrate achievement. They do have one thing in common: they claim that their focus is not on ‘beauty’ alone. Perfectly admirable you might say. But I can’t help but wonder: if that’s the case, why have the pageant, frock and sparkly tiara at all? Surely, there is a more appropriate forum to celebrate achievements, skills and qualities than a beauty pageant?

One contest particularly celebrates young disabled girls. Many little girls (of which I was one) enjoy dressing up, so I can see the potential joy and fun on offer for these girls. Although my personal contempt for child beauty pageants applies irrespective of disability, I was more alarmed that the Telegraph summarised the disabled pageant as allowing the girls “to be seen as something other than disabled.” What a cruel message.

Turning to the adults, sexuality is a big part of this debate. Miss World began in 1951 as a bikini contest, but added intelligence, personality and talent elements during the 1980s under political pressure. The reason that pageants these days (disabled or otherwise) are at pains to stress that they celebrate stuff of more substance is because they know their days are numbered. If the beauty pageant industry is as progressive, inclusive and enlightened as it proclaims then why are there separate disabled pageants in the marketplace? According to the values of the mainstream pageants, disabled women should find themselves fairly represented as contestants and winners. I, for one, would love to see some data to check that’s the case.

In their niche pageants, I suspect that many of the female disabled contestants, by putting on some slap and parading around in front of the judges, seek to make a bold statement about themselves as sexual beings. Culture associates sex and sexuality with our vision of ‘perfect’ bodies. On that basis, I have to hand it to women with the gumption to literally present themselves for evaluation under the spotlight! However, in the fight to resist the pressure to suppress our sexuality, we must avoid unintentionally demanding to be equally objectified. Why on earth would disabled women demand access to an industry that women (and men) all over the world are calling for an end to?

Ironically, disabled women in the UK are in a privileged position by not being exposed to this old fashioned sexist codswallop. So, on this occasion, I personally will not be pushing for equality!

- by Sarah Rennie

Sarah, Sisters of Frida CIC steering group member, is a director at the Wisdom Factory CIC.  As a former solicitor, her day-to-day research work is not to do with disability matters.  However, Sarah acts as a consultant for select clients on internal equality working groups.  She is based in Birmingham and is a Trustee of the city’s Access Committee.

sarah

Michelle Daley: Lived experience as a BME disabled woman

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Presented at the ‘Let’s Get Personal’ Conference on Self-Directed Support and BME Communities in Edinburgh

on  Wednesday, 14th May 2014

Michelle Daley

Michelle Daley

Thank you for inviting me to speak at your ‘Let’s Get Personal Conference’. When I received the information and I read the title ‘Let’s Get Personal’ I said wow! How much information should I share because it could get REALLY personal! On a serious note in many ways the title is very pertinent and relevant to the whole issue around social care and continuing health in that the endless list of questions that need to be answered in order to satisfy rigid criteria’s, which are not geared at promoting or achieving real independent living.

The purpose of this presentation is to share with you my lived experience as a Black Disabled Woman using Self Directed Support. As my experience pertains to race, disability and gender identity the focus will look at my personal challenges in achieving real independent living from a personal and professional perspective.

We have seen throughout history, how both Black and White Disabled People have challenged (and even died in the struggle) against unfair treatment. It is because of the endless advocacy and campaigning that I can be here on the podium having this discussion with you today. Many years ago I would have been locked away in an institution with no rights and remained there until my days were over. I am very thankful for the progress made which I am fortunate to enjoy today, however, I continue to be reminded by the horrible stories reported globally in the media, that we still have much work to do to help the many Disabled People whose voices continue to go unheard.

Before I continue with my presentation, it is important that I define ‘Black Disabled People’. I am describing people from African, Caribbean and some Asian descent. With this in mind, I would like to set the scene by raising a few questions for you to consider such as:

- Do you think Black Disabled People have a different understanding of ‘Independent Living’?
– In what way can service provisions and the like address oppressive practices if we [Black Disabled People] are absent from the political debates?
– Do you think that Black Disabled People receive a better, worse or the same quality of social care service in comparison to their white counterparts?

I will attempt to address these questions throughout my presentation.

The issue of independent living continues to remain a problem for many Disabled People but if it is an issue for White Disabled People often it will be even more problematic for Black Disabled People.

One of the views I often hear is that Black Disabled People have a different understanding of ‘independent living’. This is a myth and I disagree with this view. This is because social-economic factors can affect how Black and White Disabled People achieve Independent Living and there will be a distinction between the experiences, attitudes and beliefs of people coming from different parts of the world. People coming from Developing Countries are less likely to be exposed to state involvement and structures. They are more likely to rely on natural support from family members and their social networks and their financial circumstances may mean that they are less likely to have access to good equipment, assistive technology and support systems.
I will refer to my post graduate dissertation where I looked at the experience of independent living between the North and South globally. My study found that there was “no fundamental difference in the way disabled people globally understood the concept of Independent Living and that it was consistent with the notions of the Independent Living Movement” (Daley, 2009, p.69). The difference I found was related to “the way Independent Living was achieved”. Some of the respondents from developing countries expressed concerns that the support which was offered to disabled people was “usually ineffective” (p.64). This implies that some of the success to Disabled People achieving Independent Living is “dependent on the role played by the Government in improving the life chances of disabled people” (Daley, 2009, p.69).

I will again refer to my dissertation from a comment made by a Jamaican respondent which shows that there is no difference in the understanding of Independent Living globally. They said:

“Independent Living to me means to be responsible for my own existence. I work, I earn my own money, I live where I want to, I eat when I want to. I have the family I want. I determine whether I have a family and stuff like that”

(Daley, 2009, p. 40).

In another example, when I travelled to Jamaica in December 2013 to visit my mother. On one of the many excursions during my trip I was directing a taxi driver on how to get to Kingston and the driver replied by saying “you know that you could be a tour guide”. I then thought, let me test his thinking… so I replied by saying “how because I cannot drive and I’d need too much physical help”. He replied by saying “why not? You could give the directions as you are doing now and someone would drive the car. Is that not what we are doing now?”. Here the thinking was consistent with Independent Living Movement principles and being self reliant. It showed how through my (and other Disabled People’s) participation in ordinary life can change attitudes about Disabled People in general.

Therefore, I do think it is dangerous to assume that Black Disabled People are not ‘clued-up’ on disability issues. Black Disabled People in the same way as White Disabled People want a chance to have access to services, be in control of their support and able to live an ordinary life.

Following on from this point I feel that Social Services and many of the services that support Disabled People are failing Black Disabled People because of the limited knowledge and understanding about our experiences.

One of the causes of this could be due to our absence from Disabled People Movement debates and other debates, which in turn does not help to address misconceptions and myths held about Black Disabled People. In the book Reflections’ written by Nasa Begum, Midrette Hill and Andy Stevens (1994) they elaborate further by looking at cause and effect. They are of the view that as Black Disabled People their experience:

“is at best mystified, at worst it is ignored as irrelevant rhetoric…Black Disabled People are perceived as being part of a problem which can only be resolved by empowered others” (1994, p.41).

I know that there have been various discussions about these issues raised above. One of the suggestions proposed is whether there is a need for a ‘Black Disabled Peoples’ Movement’? This is also something that Midrette Hill (Nasa Begum et al, 1994) has strong views on which she comments about the failures within the Disabled Peoples Movement to fully embrace Black Disabled People’s experience. What we learn from Mildrea Hill (Nasa Begum et al, 1994). It is necessary that Black Disabled People align themselves to people that share their experiences, who want more out of their lives, not happy with living life just as it is. Who recognise that if change is going to happen, then it is up to us, to demand our involvement within the debates, in order to address institutional racism and other forms of oppression.

I also feel there is a need for better advocacy support for both Black and White Disabled People, to create positive images of Black Disabled People (including Women), to increase the representation of Black Disabled People across the workforce but also to support Black Disabled People to become conscious about political issues affecting Black Disabled People. My colleague Jas Johal – Direct Payments Manager said

“I do not think that any of these schemes [Direct Payments] have knowledge around these issues, at the same time I do not think there is a need for separate schemes, but there is a need for dedicated workers.”

I know that many of the Disabled Peoples’ organisations do not have the skills to adequately support most Black Disabled People and often this amounts to discrimination. There is a growing need to address this issue and it is not as small as perceived.
Midrette Hill (Nasa Begum et al, 1994) also said there is a need for Black Disabled People to see the connection between race and disability. Well, that was me before I became involved in the Disabled Peoples Movement. I was disconnected from the experiences of Disabled People. I grew up with a non-disabled family and I had never met an adult Black Disabled Person as you can imagine it was very difficult for me to picture my life in any positive way.

It was a good friend of mine, Jaspal Dhani, who introduced me to the Disabled Peoples Movement. Jaspal Dhani had invited me out for a drink but little did I know that this meeting was to be one of the most significant moments in my life. At the time I had just finished university and was really struggling to find employment. The Disability Discrimination Act was not introduced as yet and companies were openly disabilist in their recruitment practices. There was no accessible transport, no Self Directed Support, no inclusive education, however, there were plenty day centres and other segregated provisions. Having just completed university I had dreams and I needed to work on them. There was no way I was going to waste myself in a segregated service. Jaspal Dhani informed me about the Social Model of Disability and informed me about the Disabled People’s Movement. I was so excited. I then became exposed to people who I would consider as prominent and influential Black Disabled People such as Dr Ossie Stuart, Saâdia Neilson and Nasa Begum. Sadly, Nasa Begum and Midrette Hill are no longer with us. It was through these encounters and reading their literature, I found comfort and it allowed me to better understand my experience as a Black Disabled Woman. One of the issues which I often struggled with was being made to feel I had to compromise my race, gender or impairment which suggested that these aspects of my identity are less important. I was not prepared to compartmentalise or prioritise certain aspects of my identity. It would imply that I do not acknowledge the different impacts of oppression – as I am a Black Disabled Woman!

There is also a need to explore the reason for the low take up of services by Black Disabled People. Often it is because the assessment process does not reflect their identity and diverse needs. In addressing this point I took the advantage of having a chat with an NHS Manager. They said “the questions are generally tailored for everyone…” A one size fits all approach, often not relevant and inappropriate. NHS Manager told me that “often you [assessor] would have to probe your client with supplementary questions and as an assessor you need to know how to ask the questions…” For me this showed the skills and ability of a good and committed assessor who supports and recognises the principles of Independent Living. In addition, it is also beneficial for the Disabled Person to have some knowledge about the different frameworks that they will be assessed on but for many Disabled People the information is often inaccessible to them.

I have seen that the attitudes and views of professionals can and do influence the way an assessment is conducted and the outcome being the services offered. I personally find the whole assessment process and questioning intrusive. You are made to feel worthless and a burden on the state. I also think Black Disabled People’s biggest fear is to be placed in a residential setting. These types of behaviours can act as a barrier which deters many Black People from accessing services, thus resulting in Black People approaching services at crisis point.

My experience echoes this point. In 2009 following surgery, my impairment had changed, my needs had hugely increased and I needed support to return home from hospital. I was told by the hospital Social Worker that my needs were too high for me to return home and they were looking to place me in a residential setting. I was not just dealing with recovering from major surgery. I was fighting to return home with support so I could continue to live my life as previously prior to my impairment changing. It was a difficult struggle. There were moments
when I would just stare at the ceiling, feeling out of control. After many hospital bedside meetings. I said – I am the author of my life. I was not going to let others determine and define my future. Even though the professionals had another view from me, but it was necessary for them to know that I would return home.

That experience was to be one of the worst moments in my life. I do not want to re-live. I felt powerless. I knew that my future was dependent on decisions made by professionals and all it took was at the stroke of a pen and an e-mail confirmation. I felt like I was going through a trial for a crime I had not committed. I was trying to fight my case, but with no advocate. I had to wait for the jury to conclude and I could only hope it was in my favour. I did return home, but I was to be assessed every two weeks for about 6 months. It was after about a year, that Social Services referred me to Continuing Health, so now my package, is a mixture of Social Services and Health.

In another one of my yearly Social Service Care reviews I was told by a Social Worker that “we cannot pay for you to dress like that – how long does it take to put those jeans on?”. This comment was insulting, offensive, highly rude and demeaning to me. I was being told that I should be denied the right to take pride in myself and not to have any choices pertaining to my life. I was not (and never will be) prepared to allow someone else’s opinion of me to become my reality.

With the austerity measures imposed by this Government, services have tightened their criteria, with many local authorities, health and other such services, making huge cuts to their budgets with Disabled People being the hardest hit. I have evidence to show how budgets are used as the focus for determining who is eligible for social care services. As Jas Johal says it is because the “senior managers’ main concerns are budgets and cutting services”. I have taken calls from Social Workers telling me that they have been told by their Manager to reduce costs of some clients care packages, but still expect the individuals to receive the same level of support. Most of the Direct Payments packages are inadequate and do not reflect the individual’s actual support needs.

While the essence of social care services is to provide extra help to children, families, disabled people, etc., it does not always appear to be attractive to everyone. Evidence has suggested that there is a low take up of services, particularly from Black People in general. In addition to the points, I raised it could also be due to:

- inaccessible information,
– services not of their interest,
– individuals made to fit into services agenda,
– services bureaucratic and regimented.

In many ways social care services approach reflects that of a Blueprint, a formalised plan which is used in International Development. A Blueprint is designed to stimulate development within developing countries. I think social care services and Blueprint share many values:

- bureaucratic and regimented,
– led by professionals,
– not participatory,
– views are inconsistent with receiver,
– difficult to make changes.

The whole thing about these systems is they do not want the receiver to be free and they continue to be dependent. I think Nelson Mandela articulates this point well. He says:

“… to be free is not merely to cast off one’s chains, but to live in a way the respects and enhances the freedom of others” (Mandela, 1994, p.544).

Because of the perceptions and these issues listed above, I believe that some Black People fears have been influenced from history where plans were used to exert power and gain dominance. For example transatlantic slave trade and British Raj and so on. In the ‘Autobiography of Miss Jane Pittman’ she talks about the struggle and challenges for Black African People when they were given their freedom in America. This moment was suppose to be about creating new beginnings and liberation for Black African People. Black African People did not have access to resources, employment or have any tools that would allow them to meet their basic needs. They were free in words, but were still at the mercy of their slave masters. Consistent with this point Harriet Tubman, who helped to free thousands of enslaved African People hasbeen noted as saying:
“I had crossed the line. I was free; but there was no one to welcome me to the land of freedom. I was a stranger in a strange land.” (BrainyQuote, n.d)
I know that this is how most Black People feel about their situation, but it also influences how they view services. I also know my mother and many of her friends would not approach social services even if they required extra help. They are too aware of the rhetoric of freedom and its constraints.

It was following the horrific killing of Stephen Lawrence the Macpherson Report, which proposed a number of recommendations to address institutional racism and helped to address other oppressive practices. However, there continues to be huge, disparity within the workforce, with most of the middle management and lower grades being dominated by Black workers. The top senior management position held by White workers who are most likely to have limited understanding about the experiences of Black Disabled People. I know this to be a concern for many professionals as the NHS Manager says “senior managers often do not have any awareness about what happens on the field.” So when an assessor presents their client’s case to their manager requesting support for extra time above the agreed hours for a Black Disabled Woman to maintain her hair and skin care this is likely to be rejected because of the Managers lack of understanding about Afro textured hair and skin sensitivity and the experience of dryness. Is its refusal related to racism, sexism or both? And / or is it budget driven?

One of the key facets linked to Disabled People achieving Independent Living is through the help of a Personal Assistant. I recognise the important role they have played in my life. I employ a team of 7 Personal Assistants most of them are Black Women and some are newcomers to England. I have asked them what attracted you to this industry? One of my PA’s said “England is very discriminatory. When we come to England our qualifications are not recognised here. This is the easiest way to get work.” Hearing this might not be comfortable, but it is the reality for many newcomers to England. As a qualified person with over ten years of work experience I would not appreciate the fact that my background and skills are not recognised and have no value.

Evidence has shown that most of the low paid jobs are dominated by Black workers. It would also not sit comfortable with me knowing that I am forced into an industry that is not recognised and has no value. I am fully aware of the issues working in the Social Care field. While there is a National Minimum Wage there is an exemption within the law which allows employers to pay Care Workers below the minimum wage. Many of these workers are often trapped in low paid jobs, do not get paid annual leave, no career development initiatives, no access to pension, no sick pay, no contract of employment and the list goes on. This is appalling treatment, abuse and exploitation of cheap labour and something that does not sit comfortably with me, especially knowing it mostly affects women and Black People.

Last year I attended a Personal Assistant training session, which was delivered by a well known insurance company providing cover for Direct Payments Users. I was not just shocked, but very worried when the trainer told the participants that casual / irregular workers (also referred to as zero hour contract workers) are not entitled to holiday pay. This is incorrect. I referred the trainer to guidance which states what workers are entitled to holiday pay. It is this type of information which does not help to promote good practices within the industry.

I also wanted to know why my Personal Assistants chose to work with me? A few of them had said to me that they wanted to see what it would be like working with a Black Disabled Woman. I have since asked them if the experience of working with me is different to that of a White Disabled Person? Those that have had previous experience of working as Personal Assistants said many of the practical tasks remain the same but there is a difference. They have said that I can relate to their experience of settlement, social networks, contact, belonging and treatment which are integral parts to a person settlement here in the UK (or wherever a person chooses to live). My personal experience and academic studies has taught me that when these issues are addressed people are more likely to feel a sense of belonging and less likely to feel unfairly treated. I think this knowledge has helped me to successfully employ a team of highly experienced and professional Personal Assistant’s for over four years. We have mutual respect, we have a clear understanding about our roles and they recognise their role in supporting me to achieve independent living. When I recruit a new Personal Assistant I make it clear, that they are not my slave, maid, child minder or carer. I explain to them that it is their role to facilitate my independence and that we are mutually dependent on each other. As my mother would often tell me as a child that “no one is an island”.

Despite many of the negative points pertaining to working in this industry as a Personal Assistant, all of my Personal Assistants have told me that the flexibility of the job has enabled them to continue their academic studies, pursue other career opportunities and it fits into their personal and family lifestyle.

I echo the Jamaican motto “Out of Many, One People” it signifies the unity of the different groups of people living on the island and this is how I see my independence. It is through the unity of the different people involved in supporting me that has enabled me to achieve my desired outcome whatever it might be. This is independent living just getting on with living.
I might not have control over the allocated Direct Payments budget, but I do have control in ensuring I promote good practice and that my Personal Assistants are fairly treated. It is important that I apply these practices as it means, that I can have a positive team, I can retain staff, my needs will be appropriately met thus I achieve independence.

I wanted to represent the idea and possibility that we Disabled People can have dreams and can achieve them. That I define my values and purpose and do not let others determine my existence and reality. It is because of the Independent Living Movement, which was spearheaded by Disabled People that made the way for me and others to be that idea and possibility of Independent Living.

I am grateful that I am living the idea and possibility of Independent Living. It is Self Directed Support which has enabled me to be here today. Self Directed Support has enabled me to work, has enabled me to maintain and pursue relationships with my friends and family. Self Directed Support means I can employ the people I want to work with me and I am in control of how my Personal Assistants help me. Simply Self Directed Support means I can just get on with living and doing ordinary things just like others.

To conclude, we must remember that for the Independent Living Movement to progress further, Black Disabled People must be involved and have real representation on the leadership team and the debates of its future.

I will always be committed to advocating for real Independent Living and for it to be recognised as a Universal Human Right.
Thank you!

Reference
BrainyQuote (n.d). Harriet Tubman Quotes. Accessed from: http://www.brainyquote.com/quotes/authors/h/harriet_tubman.html
Daley, M (2009). Voices of Disabled People: A comparative study to explore the North and South experiences of Independent Living. MSc. London: University of East London
Nasa Begum (Editor); Mildrette Hill (Editor) and Andy Stevens (Editor) (1994). Reflections: Views of black disabled people on their lives and community care. Central Council for Education and Training in Social Work, London
Mandela, N (1994). Long Walk to Freedom. Little Brown and Company (Canada) Limited, United States of America