Some Sisters of Frida went to ENIL 2017 Freedom Drive,Â which brought together 300 Independent Living activists from 19 countries in Brussels.
It brought an an end to a week of promoting independent living, peer support, protest and celebration of disability rights. The Freedom Drive has brought together around 300 independent living activists from 19 countries, from as far East as Albania, to Norway in the North.
Among the main Freedom Drive demands were the end to institutionalisation of disabled people across Europe, access to personal assistance in all countries, full implementation of the UN Convention on the Rights of Persons with Disabilities and the end to cuts to support services and benefits for disabled people.
Lani Parker and Michelle Daley said:
We also met some MEPs,Â Anthea McIntyre MEP,Â Keith Taylor MEP,Â Molly Scott-Cato MEP,Â Wajid Khan MEP, andÂ Daniel Dalton MEP, among others to ask them questions on independent living, accessibility, inclusive education, disability rights after Brexit, freedom of labour as part of the EU among other issues.
The night before the march we met up with other British attendees for dinner, including Sarah Rennie (Sisters of Frida, Steering Group member) , who had to leave before the march.
We were outside the European Parliament the next day to join the other ENIL Freedom marchers on the streets of Brussels.
Thank you all for all who came with us. Thank you for ENIL to organising this and we wish Zara Todd, as incoming director, the best for the future.
More photos at Sisters of Frida Flickr account.
Main talks programme panel âIntersectionality for Beginnersâ at Women of the World Festival 2017, in London South Bank. This panel featurered a keynote from Lydia X. Z. Brown and panel of Guppi Bola, Kuchenga Shenje, Emma Dabiri, and Eleanor Lisney (from Sisters of Frida) chaired by Hannah Azieb Poole. Transcripts kindly provided by Lydia)
This was the prepared speech by Eleanor LisneyÂ for the panel (but not read out)
When I came back to the UK to take up the position of relationship manager at a university, people told me I ticked many brownie points. I learn to realise they meant I had many disadvantages , because I was a woman, of an ethnic minority, and disabled. Some said it must be an advantage in applying for jobs but believe me, it isnât . This is before I even heard of the term â intersectionalityâ, the multiple oppression that arise out of having multiple identities, Â and understand the impact it had on my life and that of others.
In January, I was invited to speak as a Sister of Frida at a hearing at the European Parliament on domestic violence and disabled people, and I used a personal example when mentioning intersectionality. When I was living in France I went through a divorce process, the court saw me as a non white, disabled woman with a bad grasp of the French language. My ex, a white British man, is an internationalÂ civil servant, had many human rights’ lawyers as his friends. I did not even know French divorce laws were different from those in the UK.
I think it was partly from that experience I co founded Sisters of Frida – understanding the complexity of having multiple identities- and also itâs inÂ Article 6 of the Convention on Rights of People with Disabilities.
States Parties recognize that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.
The UK has ratified the CRPD and In fact, quite a few of disabled activists are heading for Geneva because of the examination of the uk govt for its implementation. I wanted to go but it conflicted with the international womenâs day events and me here at WOW.Â Disability and feminism. Women organisations do not know much about disability and disabled peopleâs organisations are gender neutral, we hope to build bridges there and make a change. Just insisting on our rights to be heard and to make spaces more inclusive and accessible are challenges. I hope we have made some difference. If I make a mention here, one Sister of Frida, is Rebecca Bunce who is a co founder of IChange has campaigned tirelessly for the Istanbul Convention and spoken on the need for access at public spaces for disabled women.
The disability movement is very white here and we would like to promote and make black and ethnic minority women more visible. Itâs a natural reaction that you donât join when you canât identify with the people in it. And to show that they are not just engaged in being there as recipients but also in leadership roles. Â We have had discussions on disability and theÂ cultural differences on the impact of disability. Many BME women come and share with me about their disabilities but they do not self identify (unless itâs a physical visible impairment ) as disabled peopleÂ because of the negative perspectives, stigma and non representation. But I know this goes for other communities not justÂ for Black and women of colour .
And in the UK austerity measures by this government have meant that the intersections of being BME and disabled and women mean that many of us are reeling from the compounding cuts in benefits and services. In all areas of our lives.
My friend and fellow Co founder of SoF, Michelle Daley, has spoken on the importance of intersectionality and the social services on Wednesday, she speaks as a black disabled woman
I quote her:
“I am a woman, a black woman and a disabled woman. In most areas of my life I’m forced to compartmentalised my different intersections…. I relate this point from one of my assessments of need. So when I explained that I needed help with skin care, which is not related to my impairment, it was dismissed. The assessor had no knowledge about skin sensitive and dryness often experienced by Black People and the need for daily skin care to prevent discomfort. In this example it demonstrated how my different intersections as a Black Disabled Woman were not considered and how they interact with each other. ”
She is chairing the SoF panel at 1.15 this afternoon. I recommend you go listen to her and my other Sisters at that panel.Â Thank you.
During the last weekend in London at the Women of the World Festival (WOW) a panel of speakers discussed why disability is so often left out of conversations about intersectionality, and surveyed the key battlegrounds that disabled women are fighting on.
The panel was organized by Sisters of Frida.
Speakers included Lydia X. Z. Brown, disability rights activist; Magdalena Szarota, Polish disability rights activist and HIA Polska Board Member; Sarifa Patel of Newhamâs Disability Forum; and Simone Aspis, Alliance for Inclusive Education (ALLFIE) campaigner. Chaired by Michelle Daley of the Sisters of Frida disabled womenâs collective.”
Other photos from the Women of the World Festival with SoF and disabled women at FlickrÂ Â Â
We collaborated on ‘Disabled women missing from history’ these were exhibited at the cafe of the Royal Festival Hall
Here we are featuring some of the blogs/websites by Sisters of Frida
Hello! Iâm Michelle Daley and Iâm a proud black disabled woman. I was born and raised in the East End of London to Jamaican parents that moved to England in the 1950âs. I have worked in the disability field for over 15 years on international, national and local issues for public sector and voluntary organisations. I am privileged that through my work I am able to express myself and support others to do the same.
Hereâs where you can find out more about my career background.
Why follow me?
Through endless surfingÂ it is clearÂ that there is a lack of representation by British black disabled people in archives and on-line particularly from British black disabled women. I want to share resources including some of my own works, post blogs and for you toÂ share your own experiences.
I am currentlyÂ a Research FellowÂ inÂ the School of Education at the University of Sheffield.Â Prior to this post, IÂ became the inaugural Ethel Louise Armstrong Postdoctoral Fellow at the School of Disability Studies, Ryerson University, Toronto, Canada.
IâmÂ a disabled feminist and public sociologist who believes in the power and politics ofÂ co-production and arts methodologies. To me,Â researchÂ isÂ inherently political, personal, and embodied, and collaborative and always community-focused. This website details my scholarly and research interests, as well as my activist work.Â Please feel free to haveÂ a look around, and donât hesitate to get in touch if you have any questions.
I am a human rights activist from the UK. I have a background in disability, training and youth participation work. I identify as a disabled person and Feminist. I belive in equity and using intersectional and inclusive approaches.
This blog is primarily to document my Winston Churchill Memorial Trust Fellowship
A bit more about me
I am a born and bred Londoner who loves art, culture, travel and politics (although i am a left leaning non partisan).
I have a degree in psychology and a masters in Eastern European studies. I am interested in identity and decision making.
I have been involved in disability rights campaigning since childhood and have been active locally, nationally and internationally in the disabled peoples movement since the age of 17. Over the last 10 years I have worked in government and the NGO sector both in advisory and delivery roles.
Prior to this trip I was working for the biggest DPO in the UKÂ Equal LivesÂ .
I am a trustee of a childrenâs literature charityÂ outside in worldÂ and a board member ofÂ ENILÂ and chair of itâs youth network.
I am also a director ofÂ Sisters of Frida, a disabledÂ womenâs collective.
Hi, I am Eleanor Thoe Lisney MA, MSIS, FRSA, AMBCS. I am passionate about access, human rights, disability culture, intersections of race, gender, disability. I am learning how to do digital strategy and smartphone film making. Recently I have become an emerging artist and making progress there.
I am a disabled Actor living in London, who trained with Graeae Theatre Co. I have worked extensively since, including my performance as Coral in the award winning Graeae play Peeling.
Other stage performance includes work with the David Glass Ensemble, TIE in Nottingham, Theatre Resource in Essex and Theatre Workshop, Edinburgh. My Media work also includes photo modelling, corporate video and radio.
I also Write and regularly contributor to various print & on-line publications, including Able Magazine (column writer for 2 years) and Disability Arts on-line (blog & reviews). This, along-side writing my solo piece, Song of Semmersuaq. Iâm also embarking on a new project.. so read this place!
Please read my resumĂŠs for more details of my work.
Sideways Times is a UK based podcast, in which we talk about the politics of disability and disability justice. Through this podcast I hope to have many conversations which broaden, deepen and challenge our understandings of how we work against ableism and how this connects to other struggles.
Here are some of them. Videos coming soon.
Many thanks to Rosa UK for enabling this event
This is Michelle Daley’s speech at Disability and Feminism at the WOW Festival
Thank you for inviting me to speak at this years WOW event.
A lot has changed over the years for women. We now see a few women in leadership roles. And, yes a few women. But this is not equality! Now ask yourself these questions:
1. How many of these women in leadership positions are white disabled women?
2. How many of these women in leadership positions are black disabled women?**
We would struggle to answer the second question. I searched the internet and it did not generate the desired result. I did find information by black disabled women sharing their own personal stories. I can only think that this is their way to get attention out there about black disabled womenâs experiences.
Through my engagement with disabled women they have told me that as a black disabled woman the way in which they interact with society is different to a white disabled woman and that their experiences are different. To demonstrate this point I will share an example from a speech I delivered in Scotland last year titled: Lived experience as a BME disabled person. I wrote âwhen an assessor presents their clientâs 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.â
Many disabled women are having to fight a lonely battle with no one to advocate their experiences and the situation is made worse if you are a black disabled woman.
Really, the situation should not be like this for our disabled women. I say this because, the purpose of the feminist movement is to remove barriers. But, this is not the view of some disabled women. They are of the view that mainstream feminism ignores the voices of disabled women â why?
– There is a lack of understanding about disabled womenâs rights
– There is a lack of understanding about black disabled womenâs experiences
By excluding the voices of all disabled women results in:
– Agendas failing to address disability issues
– Makes the feminist movement weaker
– Does not help to address discriminatory practices
– Does not help to address the abuse and violence experienced by many of the silent voices
I want to take you back to the opening question to show how through the lack of involvement of disabled women results in poor quality of services and in the worst cases exclusion from society. The feminist movement cannot continue to ignore some women’s voices. Every attempt must be made to address the barriers and bridge the gaps between theory and reality for all women and not just the few.
** I am describing black women as people from African, Caribbean and some Asian descent.
A panel (Disability and Feminism) of campaigners will be asking at the WOW Festival whether the resurgence of mainstream feminism ignores the voices of disabled women and discuss what happens when gender, race and disability collide. Speakers include Becky Olaniyi and Michelle Daley of Sisters of Frida. Chaired by Eleanor Lisney.
The Woman of the World Festival is a festival of talks, workshops and performances celebrating women and girls held at the South Bank.
This follows the disabled performance artist and choreographer Claire Cunningham who offers a provocation on the widely held assumption that disability is a negative state in which to exist, and asks whether dance by only non-disabled people is actually… a bit boring?
Please do come and say hello! You do have to get a ticket but there are limited half price concessions for the day available.
It was a brilliant night – thank you all for coming – Becky Olaniyi,Ruth Bashall, Michelle Daley, Janet Price, Lani Parker and others.
this is the link to the video
Feminism, Disability and Activism
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 Iâll hand over to 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? Iâve seen that.
Inka: Would you like that?
I donât know if anyone is watching. If anyone can put it on Twitter, Iâve put it on Facebook but I donât know if itâs 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 didnât manage. Well, we did manage to get one and we thought hallelujah but something personal happened and she couldnât 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 donât know yet, the title of this meeting is Disabled Womenâs 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 didnât 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 canât 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 thatâs 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 didnât 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, thatâs 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.
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. Beckyâs 18, she is doing her A Levels, sheâs amazing. She does swimming, tennis and reading and is studying English Literature, Psychology and Sociology and hoped to study psychology at university. Sheâs 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.
Congratulations and arenât 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. Sheâs 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 thatâs OK?
First of all is there anything else that you would like to introduce that I havenât already done?
I am not sure. This is so weird hearing my own voice! Well, I am Becky and Iâm 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, thatâs pretty much it.
I donât 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?
Thatâs a difficult question to answer. I donât 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.
Yes, but I think then my question is how do you find that these different identities, for example, I know that my Chinese community donât really accept disability and I have problems there. Youâd be hard pushed to find many BAEM (Black and Asian Ethnic Minority) disabled peopleâs organisations. There is one called National Equality Council. So thatâs why the question but I think that what you have said is quite fair as I donât 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?
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.
And from there it really inspired me to do more and more and now I am here.
Great. I think I asked because one of the themes is activism and thatâs sort of part of Occupy London as well. Its great because one of the reasons I asked you is because itâs 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 havenât 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?
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 thatâs 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 thatâs counterproductive.
I canât 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?
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 doesnât dull your intellect and even having a mental disability doesnât 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 doesnât 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 doesnât want it to be something that is shared with other people and I think that is a serious problem because if people donât want to be open with their disabilities, how can we meet people who have disabilities?
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 Iâll 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 donât seem to be mentioned.
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.
Fantastic. Thank you Becky.
Is there anything that you would like to ask? Or talk about anything I left out?
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)
I think before we go to questions we should ask Ruth the same questions.
This is an introduction as there may be some of you who do not know her. Ruth runs Stay Safe East, a disabled peopleâs organisation or DPO for short which supports victims and survivors of all forms of abuse including domestic and sexual abuse and hate crime. Theyâre 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 donât 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 âAinât I a womanâ. 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?
I suppose itâs partly about your question later about activism but I didnât 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.
We havenât talked about you.
Which identity is the most important to you or do they have equal impact on you?
I think like Becky, to me Iâm me, Iâm 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. Iâm a disabled women, Iâm lots of things. Iâm 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 âas black women, aint I a women, as a disabled women aint I a women tooâ and that disabled women were seen as genderless and you even have so-called disabled toilets. I remember going to a disabled womenâs 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 didnât fit any of those but thatâs 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 donât 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. Thatâs the important thing that we donât have to apologise but that we are also welcomed and recognised and that the experience weâve got is recognised and taken account of in how anything is organised, done, thought about etc. And thatâs 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 itâs 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 itâs the same thing. Itâs about recognising that our differences bring us together. I canât remember the quote from Audrey Lord but there is a wonderful quote about not being afraid. âItâs not our differences that divide us but the fear of our differencesâ I think is the quote. I think that says it all really.
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.Â Â So, there is a problem with disabled peopleâs organisations as we talk about disabled people but we do not talk about disabled women. So thatâs 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?
I mean I would call myself a human rights activist. I think (pause). Itâs 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 Womenâs 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 Womenâs Newspaper who were a socialist feminist womenâs publication at the very end of it. Itâs 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 womenâs 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 donât go together. And interestingly now I find myself in the same situation working with disabled women now where the two words donât go together where there is an assumption that if you are a disabled women you are an unfit mother. Hasnât changed that much. Itâs 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 itâs 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 havenât 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 thatâs 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 thatâs my background in activism.Â Â And itâs fantastic to see a new generation of feminism coming along who have got that international perspective.
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?
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 hadnât 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. Itâs not rocket science and itâs 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 didnât know how to arrest us. There werenât any accessible police stations in Central London. Iâm afraid there are now so it doesnât work anymore! (laughs). Theyâre a lot better at it now. I must admit I have been an advisor to the Metropolitan Police. But I didnât 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 Iâm 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 donât 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 itâs 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), itâs 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 Iâm 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. Theyâre 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 donât 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.
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.Â Â And I think that is exciting and I think that like tonight we said that itâs for men and women, disabled and non-disabled as we all have to work together and itâs 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 Iâm thinking that maybe itâs 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? Iâm 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 donât 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.
Itâs 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 donât 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.
Am I alright here or would it be better if I held it (the mic)? Iâll 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, thatâs 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 peopleâs lives as they choose to represent them whether itâs through plays or through poetry or through films or through statues and we are very clear that we are not trying through DaDaFest, this isnât 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 itâs 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 itâs 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 itâs 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.
Itâs 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 âI didnât know that disabled women had sexâ and you know, people saying âIâve never sat next to a sex worker, whatâs life like for you?!â And so conversations happening that just donât 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 itâs not just simply the women who are deaf and use sign. Itâs 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. Itâs 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 isnât getting at you Eleanor. Itâs 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 thatâs 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.
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 didnât 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, MaliniÂ Chib, who didnât 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?
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 wasnât 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 âfuck the policeâ 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….
I just want say that I was really excited when Eleanor told me that we have Becky coming to speak. She was like âwow, we have a young woman , sheâs articulate, she knows her stuffâ and I said âalright, alright youâve sold enoughâ! 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 Beckyâs experience doesnât really reflect every disabled people out there as many young disabled people donât 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 peopleâs 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 wonât understand that. If she wants to get on a bus she just gets on a bus. But that wasnât 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 couldnât 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 donât 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 itâs how do we reach them? Not everybody has the opportunities that we have. People could define us as privileged disabled people.Â Â I wouldnât define myself as privileged but in many ways we could be for people who canât 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 âwe need a black person at the tableâ and that used to really annoy me and I would say Iâm 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 âcome to the room because we need young black disabled people around the table.â Itâs 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 âcan you come to an event because we donât have any representation from certain groups?â Yes we want to have diversity but donât 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.
I think that one of the things we got to remember, and I think in termsÂ of activists, we were just talking about the independent living allowanceÂ being abolished, thatâs probably going to finish off this generation ofÂ activists. It has funded PAÂ support for the entire disability movement.
There are young disabled people now that canât leave home, who canât
get involved in stuff because they get only 10 hours per week support.
They canât get out of their front their doors, physically they donât get
access, simply because everything is cut back. I think that if you are anÂ activist, fighting for our basic rights to services, itâs not sexy, itâs notÂ something that politicians bother a pee about because the disabled voteÂ is not a collective vote that people have an awareness of, itâs invisible,Â itâs what happens to people when they are in their own homes,Â particularly if they canât get out. But actually this is a key human rightsÂ issue. People I work with are fighting to get basic support for someoneÂ who has survived domestic violence, who survived raping institutions,Â who is traumatised and is still being told they donât deserve â and thisÂ word deserve keeps coming back – basic support so that they can get outÂ of their beds, that is basic. And itâs not out on the street, because theyÂ canât get out of bed to go on the street and we need to fight for that asÂ well. We want to see a new generation of young disabled people, but weÂ need to fight for their right to be there. Sorry to put a pessimistic angleÂ on it, but I think itâs 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.Â And at that point Iâll stop talking about Becky and hand her theÂ microphone.
I think itâs really exciting being considered to be part of the new
generation. I never considered myself like that, I always think of myselfÂ as an individual. I would like to say thank you to women like Ruth,Â because it never occurred to me that there were disabled women beforeÂ me that didnât have the opportunity to go to main stream school. ItâsÂ really important all the work that you have done, if you hadnât existed,Â I wouldnât be here. People like you need to be acknowledged, even youÂ kind of downplay your hard work what you have done, but I think youÂ have done a lot for the disability movement. And I would like to meet aÂ lot more women like you because you donât get a lot of attention.
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 disabledÂ people getting a decent education. The quality of education in specialÂ schools ainât what it should be, letâs put it that way. And a segregatedÂ society can never be an equal one.
We are part of a movement, itâs not over yet. I was interested to hear
what you were saying about India. Thereâs a sense that the second waveÂ of feminism kind of died back in the more wealthy countries andÂ actually women in India and in Latin America have taken up the
mantle and that has continued, and in terms of disabled women that hasÂ been the same. Maybe it has come back to us full circle. I would like toÂ get into contact with that group, I would be really interested in whatÂ they are doing.
Weâve been talking about the next thing we are doing to do, with SistersÂ of Frida, is screening a documentary of 4 disabled women who areÂ talking about their sexuality, weâre hoping to organize that event, but IÂ am still looking for the time to write the funding for that. Back toÂ Michelle..
This echoes what Ruth said, I think itâs really important, as long as we
have segregated services, we are never going to have inclusion. We haveÂ to continue the struggle and fight for disabled people to recognize thatÂ young people do need to be aware what segregation really means. TheÂ moment you have a job you tend to forget that you have to fight for ourÂ freedom. You know, because we have a book âŚ.. accessible âŚâŚ.
It doesnât 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 havenât achieved full equalityÂ yet.
And also, and I am paraphrasing you Becky, questions about which
identity is important to you, Iâm so glad that Becky said, well, they are
all important to me. I am who I am, that is all important. Thatâs
fantastic and the moment we start compartmentalise different bits of
ourselves, thatâs wrong in it self. We need to be recognized for who we
are. This is just a platform, we need to keep going.
To continue from what Ruth said this is the beginning of something
great, letâs hope that it starts tonight. Janet, did you want to come
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. Itâs
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 wasnât aware that any people from our world, the first
world, the western world, attending, so Iâld like to hear more about
Woman in audience
Can I just say one comment for OTâs. 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, itâs getting people to see us
beyond our disability, see us as we say: we are women, part of a globalÂ citizenship. We are much morethan our diability. We have to keepÂ reminding them our disability is not our identity, itâs just part of whatÂ we are.
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 â Iâm 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, everybodyâs
problem should be everybodyâs problem.
On identity. Nobody here can know their identity until the world
understands its identity and the worlds identity needs to incorporate theÂ potential identity of every creature. And everything that happens on theÂ planet. We have a big problem about identity, the world actually doesÂ not know what it is. The politicians who rule this world like gods withÂ tridents and blazing with fire, they do not understand their ownÂ identity, they do not understand the functionality of the world, what theÂ world should be about. Everyone can enable the world to discover itsÂ true identity, by empathy, by caring in a really authentic way. Sorry if IÂ went on a bit too long, it is about passion and passionate words.
Thanks for that. Thereâs a lot of problems around the word disabled
and about the concept of disability. I think itâs 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. Iâm
not going to give you an advanced course in disability and equality andÂ the social model. To me being disabled is about your pride, itâs notÂ something to be ashamed of, that is not to say that the reality of ourÂ impairment which is about our conditions, is not sometimes difficult.
But itâs not the only thing about me, I can peel the carrots, itâs 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 disabledÂ woman to me is so crucial to our identity as a disabled women, notÂ seeing the fact that our bodies, our minds, our ways of seeing the worldÂ happen to be are different than other peoples. And that is not aÂ problem, and I think we were trying to get at that, its absolutely crucialÂ to our sense of pride, being able to live our lives as disabled women, theÂ fact that we might have to do things differently, that we pick up ourÂ dinner with our feet not our hands, we might happen not walk butÂ wheel, the fact that being blind is not a loss but who you are, as long asÂ we perceive disability as less than, something that is a loss, that is aÂ shame, itâs so sad. âIsnât it wonderful that you speak out â, because youÂ are a disabled woman
Yes, on one level itâs wonderful because we face so many barriers, thatÂ we are able to speak out, on another level, its just life. We are what weÂ are and in fact we are very proud of being a disabled woman. ThatÂ identity is something to be claimed, so many of us are actually ashamedÂ of who we are and we feel we have to apologise for ourselves. As aÂ movement if we can create a space where disabled people, women inÂ particular, can be themselves, that does involve doing practical things,Â but also talking about ways of thinking, doing and knowing thatÂ together we are a heck of a lot stronger.
We talk about disabilities not just our identities. This may be the
appropriate place to say that our wonderful friend Kirsten canât be
here, because she is, what do we call it, she is celebrating her, what do
you call it?? I donât 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,âŚ thatâs what I want to end on, we donât 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 theÂ time. Disabled womenâs 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)
onÂ Wednesday, 14th May 2014
Thank you for inviting me to speak at your âLetâs Get Personal Conferenceâ. When I received the information and I read the title âLetâs Get Personalâ 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 criteriaâs, 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 âBlack Disabled Peopleâ. 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 âIndependent Livingâ?
– 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 âindependent livingâ. 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 âno 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 Movementâ (Daley, 2009, p.69). The difference I found was related to âthe way Independent Living was achievedâ. Some of the respondents from developing countries expressed concerns that the support which was offered to disabled people was âusually ineffectiveâ (p.64). This implies that some of the success to Disabled People achieving Independent Living is âdependent on the role played by the Government in improving the life chances of disabled peopleâ (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:
âIndependent 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 thatâ
(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 âyou know that you could be a tour guideâ. I then thought, let me test his thinking… so I replied by saying âhow because I cannot drive and Iâd need too much physical helpâ. He replied by saying âwhy 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?â. Here the thinking was consistent with Independent Living Movement principles and being self reliant. It showed how through my (and other Disabled Peopleâs) 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 âclued-upâ 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 Reflectionsâ 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:
âis 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 othersâ (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 âBlack Disabled Peoplesâ Movementâ? 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 Peopleâs 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 â Direct Payments Manager said
âI 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.â
I know that many of the Disabled Peoplesâ 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 Peopleâs 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, SaĂ˘dia 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 âthe questions are generally tailored for everyone…â A one size fits all approach, often not relevant and inappropriate. NHS Manager told me that âoften you [assessor] would have to probe your client with supplementary questions and as an assessor you need to know how to ask the questions…â 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 Peopleâs 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 âwe cannot pay for you to dress like that â how long does it take to put those jeans on?â. 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 elseâs 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 âsenior managersâ main concerns are budgets and cutting servicesâ. 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 individualâs 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:
â… to be free is not merely to cast off oneâs chains, but to live in a way the respects and enhances the freedom of othersâ (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 âAutobiography of Miss Jane Pittmanâ 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:
âI 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.â (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 âsenior managers often do not have any awareness about what happens on the field.â So when an assessor presents their clientâs 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 PAâs said âEngland is very discriminatory. When we come to England our qualifications are not recognised here. This is the easiest way to get work.â 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 Assistantâs 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 âno one is an islandâ.
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.
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
(from right) Rahel Gaffen, Michelle Daley, Zara Todd, Lucia Bellini, Kirsten Hearn, Eleanor Lisney and Ciara Doyle.
Filmed with thanks to Disability Action in Islington by Felix Gonzalez for the WOW party installation at the Southbank, London
speakers : Michelle Daley, Zara Todd, Lucia Bellini, Kirsten Hearn, Eleanor Lisney and Ciara Doyle.
Filmed with thanks to Disability Action in Islington by Felix Gonzalez for the WOW party installation at the Southbank, London
Ok my names Michelle Daley and Iâm a member of Sisters of Frida and Iâve been involved in the Disabled Peopleâs movement since early 2000
I think itâs important for us to kind of think about why is it as disabled women we have to keep justifying our existence
Why do we have to justify who we are?
Why do we have to say make a statement about yes Iâm attractive?
I can be err attracted to others
Iâm a woman and Iâm the same as any other woman
I also think itâs important that we recognise the people that came before us err who fought for women rights
But also there are many important disabled women who fought for our rights as well
and I think thatâs what makes me proud of who I am as a disabled woman knowing that there was someone before me who started that journey
And I think itâs for me to continue that and to say yes I am proud to be a disabled black woman
So Iâm Zara, Iâm 28 and a proud disabled young woman um yeah thatâs me!
Is that all youâd like to say about today?
Err my brains a bit frazzled!
I think that itâs really interesting bringing together a group of disabled women
because yes we have a lot of shared experiences but we also have a lot of things
that are very unique to us
And I think often itâs easy to get caught up in labels
And while we need spaces to explore our identity we donât necessarily need to come
to the same conclusions
And what I think todayâs been quite good at
What I think the event will be quite good at is getting a space where we can
acknowledge who we are
All of who we are and just go yeah fine
My nameâs Lucia Bellini and Iâm part of Sisters of Frida
Iâm really happy to be able to say that Iâm a disabled woman
That Iâm very proud to be a disabled woman
Iâm independent, I work, I am able to challenge stereotypes
Um and Iâm able to fight for equality of opportunity in society for disabled people in
Iâm um I think that there needs to be a lot more publicity or disabled women need to be portrayed in a much more positive light in the media
Um we were talking earlier about disabled women doing the catwalk but made to look non disabled
And I think we should be proud of our identities, we should be proud to look different if we choose to
Err if we want to conform and wear make-up and err and we should also be allowed to choose to do that too
Err err Iâm a bit fed up of people telling me asking me why I want to wear make-up
Why Iâm interested in how I look if Iâm blind
Err I also think that itâs time disabled women are seen as women and not different err
you know we heard about the fact that err women donât understand that we want to go out on dates just like everybody else
That we can also have children if we choose to
That we can be in a relationship if we choose to
That weâre no different because weâre disabled
That we just have the extra challenges that we have to overcome
You have to overcome extra discrimination, discrimination because weâre female and
discrimination because weâre disabled as well as all the additional barriers we have and in physical access
So I think that um more that it would be really good if more women, disabled women, would be proud of being who they are
Of coming out as a disabled woman and um being angry enough to challenge the discrimination that they receive in our society
My nameâs Kirsten
Um I wrote a song about the plight of disabled women and Iâd like to share the lyrics
âThink of a mag, yes any old mag
Whatâs on the cover?
What do you see?
Pretty young women posing and grinning
Slender and sexy but nothing like me
Is this the way itâs supposed to be?
No one with blubber gets on the cover
No one who hasnât got symmetry
SAS Sisters against Symmetry
SAS Sisters against Body Bigotry
They say that prosthetics donât make good aesthetics
Our surgical corset should never be seen
With bits of us missing thereâs no good us wishing
To grace the front cover of Vogue magazine
Indoctrination, objectification this is the way it has always been
Youâve got to be bold break out of the mould
We shape our image letâs learn to be mean
SAS Sisters against Symmetry
SAS Sisters against Body Bigotry
Cherish those humps, those nodules and bumps
Those wrinkles and bulges and bubbly bits
Nurture your spots, your baggy old bots, your stretch marks and scars and saggy old
Symmetricality is the pits
Take it or leave it we donât care one bit
Our bodies are ours including our clits!
SAS Sisters against Body Bigotry
SAS Sisters against Symmetryâ
Ok right thatâs better!
Um the key thing that I need to say about being a disabled woman and my
experience in the world is itâs a joyous thing
Itâs an absolutely joyous thing to be a disabled woman
I am different in many ways
I have different ways of appreciating the world
And Iâm not being Polyandrous about it
It actually is true that we live in a world that assumes that everybody is non-disabled
That everybody can hear, see, speak, walk, talk all the whole lot
And our world is designed in such a way just to allow those to be members of that
And I feel really strongly that if we want a diverse community we have to embrace
and celebrate, support and glorify all those people who are different in that kind of
And so I do a lot of writing, a lot of speaking about the difference that is me as a disabled woman
And by celebrating those things that other people might find ugly or frightening and at the end of the day thatâs where I want us to be as disabled women
But I donât want us to lose the feeling of anger
We can embrace our pride
We can embrace our anger
And send it outwards to make changes in the world and at the end of the day
I believe that sanity comes to us in terms of being able to cope with the world if we
can also hope that what we do makes a difference
And I really hope that what weâre doing today is making that difference
Iâm Eleanor Lisney
Iâm a disabled woman and Iâm proud of it
It took me a long time err to come out as a disabled woman even though Iâve had my impairment for a long time
I think for most of my youth I was in denial err about it and I wanted to be a normal person just like everybody else
However I am very happy to be with other women who
I find joy in having found other disabled women
Err itâs a sort of relief and a joy and um celebration to be able to talk with other
women about things that Iâve thought of for a long time and have been quiet about
And now itâs no longer time, itâs no longer time to be quiet
Itâs time to um have a voice
Iâm Ciara, I am an academic and err a mother, a career woman and a disabled woman
Err I think today was really really powerful and important
Err the err the reason sorry Iâm completely frazzled!
Ok err I think that today was extremely important err
I think that it doesnât happen nearly enough
And needs to happen much more
That the feminist agenda comes to disability politics
And that disability politics is brought to the feminist agenda
Because I really think they need to work far more closely together
And I think that there are areas within feminism or disability where disabled women need to be in the lead
I think that we as women in particular in this society
We are judged very very much within our bodies and how our bodies function
Err within quite strictly set gender norms
And I think that disabled women in particular are living on the knife edge of this
because itâs not just men the Patriarchal system in general
But the Patriarchal system through the medical profession as its Police Force
That chooses to pathologies or identify when womenâs bodies, emotions or minds
are working within what are perceived to be acceptable levels of normality
Or outside of those acceptable levels of normality which are then pathologised
Which then creates disability because women are told that they are abnormal
And must either accept a victimhood status
Or work hard to normalise themselves
Instead of being able to celebrate who we are and what we are
And so this why I believe these are very much gender issues as well as being very very much disabled issues
And it is of no surprise that the majority of people who develop disabilities are women
Err and that it is two issues that need to come together and spend far more time and
dialogue with each other
Which is exactly what we were doing today
Making a start on that