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

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at the showroom: people sitting on the floor

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

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

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

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

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

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

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

Disabled Beauty Pageants: Be Careful What You Wish For

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

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

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

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

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

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

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

- by Sarah Rennie

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

sarah

No to Assisted Dying

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people in a semi circle woth Not Dead Yet  tee shirts and placards

Not Dead Yet UK campaigners against the Assisted Suicide Lord Faulkner’s Bill at the House of Lord.

Sisters of Frida do not agree with Lord Faulkner’s Bill on Assisted Dying as disabled women.  We asked Maria Zedda, member of the steering group, to write her own experience and thoughts on the Bill.

maria

Maria Zedda

She writes:

I was asked to write something about the assisted dying bill and I wrestled with this thought as this is a subject touches me very closely.

But briefly, I’m going to say that I had a beautiful baby sister who was a year younger than me. When she was born my mother kept telling the doctors how worried she was about her jaundice, she just looked too ill. The doctors told her not to worry and in twelve hours her jaundice worsened greatly, leaving her neurologically damaged, with Cerebral Palsy. She was a very fragile young child but brought so much joy with her smile, laughter and I remember her very well.

The doctors kept making mistake after mistake in her care, giving contradicting advice, until one day my sister contracted pneumonia. She was kept in hospital but after a few days, she died. She was almost 3 years old by then. And my family were told that she was better off dead. Why? Because “she would not be suffering anymore”.

This is what I believed for a long time. I resigned myself to the fact that she was indeed better off – and I learned to live with that hole in my soul. Then, I met my disabled friends, many of whom would be regarded as “severely disabled” by doctors and I’m not sure about this any more. The hole that my sister left seemed much bigger.

After years of missing my sister and still not quite accepting her death fully, I asked myself when could anyone have the authority to decide when a life is worth living? Could it be that her death finally put an end to a series of mistakes by the doctors who thought “knew better” but actually didn’t?

So many of my friends are “severely disabled” and “stunned doctors” and overcame all expectations”… even myself, after being diagnosed with 75 to 90% hearing loss, I was told I could not have a job and probably won’t be able to finish secondary school.

At first this might not relate very much to Lord Falconer’s bill but in my view it does because I simply do not trust doctors or other medical “experts” to understand and interpret how disabled people, sick people and “terminally ill” people might feel and what we might be able to achieve. Although mostly they mean well of course, doctors do not always know better.

Baroness Jane Campbell explained it very well in her article where she tells how doctors wrongly diagnosed her as terminally ill five times. Lady Tanni Grey-Thompson, interviewed outside the House of Lords yesterday said how uncomfortable this bill made her feel. She says she received a great education and was very supported by her family and felt able to shrug off comments from people who told her “if I was like you I’d want to die”. She rightly says “what if I had not had that support from my family? Would I then feel that I would be better off dead?”

At the lowest of our lows, when we are suffering, that’s when disabled, sick and very elderly people might actually want help living, not dying.

I understand that many genuinely wish to die, absolutely. But unfortunately until all doctors are trained in the Social Model of Disability and understand that through Independent Living people can survive, be happy and thrive, then I cannot trust this bill to pass: there’s too much at risk.

Disabled people are already victims of hate crime, stigmatised as scroungers and a burden on society, the risk is too great that they’ll feel pressurised to “unburden” their families, when actually Independent Living, appropriate care and support will help them thrive and contribute to society. Doctors don’t exactly have a good track record of understanding this. How can they be trusted to draw a line and decide when someone is genuinely asking for suicide assistance or are simply too low and desperate and need support and help?

So I say NO to Falconer’s bill. After all, as Ghandi said “The true measure of any society can be found in how it treats its most vulnerable members”.
And this thought, my dear sister, Anna Maria, is for you.

 

There were many campaigners waiting outside while there were many speakers at the House of Lords for this debate on the 18th July, both for and against.

Here is a video of Baroness Tanni Grey-Thompson on the day

 

Here is a speech by Baroness Kennedy of The Shaws (Lab):

My Lords, this is one of the most challenging moral issues of our times. On the one hand, we are dealing with the right to individual autonomy and to bodily integrity, and with the right to make decisions about our own lives. So it is a profound issue of human rights. On the other hand, there is the need to preserve the wider fabric of an ethical society with an overriding principle that human life is to be valued and guarded against violation and abuse.

That is the bigger picture of sustaining the culture in which human rights, particularly those of the vulnerable, will be protected. This Bill, I have no doubt, is derived from good motives. I respect the aims of those who wish to relieve the suffering of people at the last stages of their life. But it is about respecting the individual. The conception of human rights that we have developed in Europe is different from that in America. We believe that it is not all about individual rights; it is about striking a balance with other rights and it is always about considering the impact on wider society. It is why we here find it so baffling that in the United States they cannot get control of their gun laws, because the individual right trumps the needs of the wider community. That is not so here.

This Bill carries us unfortunately across a line. It takes us to a different place and to deny that is not right. I believe that it will change the moral landscape. The question is whether we are creating a climate of greater compassion or stimulating a climate of chillier decision-making. Are we raising the bar of humanity or are we creating a society where our ethics are made of coarser cloth? We could with good intentions be planting a seed that bears unexpected fruit, so that we end up with different calibrations about the quality of life and about humanity. What is exceptional today so easily becomes standardised tomorrow. Sometimes that is to the good, but sometimes it is to the bad.

It is a fundamental principle of law that we should safeguard life—it is an absolute principle—and I think that it is too important for us to abandon it. Like the noble Lord, Lord Macdonald, I am concerned that this Bill creates immunity from inquiry, and I would like to hear more from the movers of the Bill about that matter. Is there to be no inquest after a death, so long as it ostensibly conforms to the Bill, with the forms filled and the consents secured? Is there to be no examination of the quality of the consent or the judgment of the doctors? Perhaps it is my experience as a criminal lawyer that makes me concerned about such total immunity from the processes of law and how the malign or reckless can misuse such processes. As the former Director of Public Prosecutions, the noble Lord, Lord Macdonald, said, these cases are currently examined. They cross the desk of not just any prosecutor but of the most senior in the land. In virtually every case nowadays, there is no action. However, it is important for people to know that there will be close consideration of the process and that there will be consequences for wrongdoing, because that is what prevents abuse.

We must ask ourselves whether this legislation will lead progressively to other changes in end-of-life care that we would not want to see, even if we can decide when the end of life is imminent—and I question whether we are able to do that with much success. It is inevitable that the creation of powers of attorney will be the next step. We can be sure that people will say, “I’d like to be able to name a person to whom I will give a proxy consent, so that when I lose my faculties they can make the decision for me”. Many would want to see that happen.

Like everyone, I am moved by the terrible stories of miserable ends. I think that sometimes doctors err too much on the side of caution in assisting the gentle passage of the dying because we have created a society laden with fear of accusation and litigation. We need to do more about the adequate training of all doctors in dealing with pain and death. Nor are we supporting doctors and nurses well enough as they make difficult decisions. Our medical world has been infected by a model of care that is increasingly commercialised. Reforms to our health and care system are reducing trust between patients and their carers—their doctors and nurses—and sometimes reducing compassion because there is so much pressure on the time of the carers.

Relationships are built through consistency and time spent, as they were in the past when we had the GP whom we knew, rather than saw someone different every time, and there were teams who consistently worked together with sets of patients. However, I am afraid time is in short supply in our market-driven regimes.

I share concerns about the pressure that we put on the aged and the disabled, expressed powerfully by many in this debate. I know that choice is the great aim of our age—choice in all things, as though we were all shopping. But who gets the choices? How many people in our communities have real choice? The issue of choice is a snare and a lure. I look around and I think that compassion is in short supply. Our society is becoming a harder place—harder on the elderly, the young, offenders, the unemployed and the poor. Society is full of people who have very few choices.

We must be careful about creating huge moral changes when we see austerity policies already having such an impact on the disadvantaged. We keep being told that this is just a small step and we will not go further. However, I am afraid I am not so sanguine about our society’s sensibilities. I look around and see such cruelty to refugees and asylum seekers. I see what is happening to the destitute and the effect of cuts on the poor. I am not so confident that our expressions of altruism can be relied on into the future. I am not so sure that there is enough commitment to the vulnerable.

Changing law is very important. Law is the bedrock of our nation; it is at its foundation. Some laws matter more than others, and this law will certainly matter. It speaks to who we are and how we want to be. Law is our national autobiography. There are good chapters and bad chapters. We should be very careful about what we are writing now.

(http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/140718-0003.htm)

There was no vote, but the Bill now moves to Committee Stage.

You can find more photos at this Flickr album.

 

 

Michelle Daley: Lived experience as a BME disabled woman

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

on  Wednesday, 14th May 2014

Michelle Daley

Michelle Daley

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

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

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

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

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

I will attempt to address these questions throughout my presentation.

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

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

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

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

(Daley, 2009, p. 40).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Context is everything: why McDonald v UK is a stepping stone on the road to a dignified future for disabled people

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elle:

As disabled women, we as Sisters of Frida have been ruminating about this case, it is good to read Steve Broach’s measured comments and how he has set it out to help us understand its complexity.  Steve is a barrister at Doughty Street Chambers and acted for Mrs McDonald in the domestic courts and the ECtHR.

For a disabled person’s perspective on McDonald v UK, see the blogpost by Jan Sutton at this link instead.

Originally posted on Authors of our lives:

By Steve Broach

The cliché that in law, context is everything is entirely true. So it is essential to examine the context for Elaine McDonald’s challenge to the decision to withdraw funding for her nighttime care, requiring her to wear incontinence pads although she is not in fact incontinent, before deciding whether the European Court of Human Rights (ECtHR) judgment in McDonald v UK (link to http://hudoc.echr.coe.int/sites/eng/pages/search.aspx?i=001-144115#{“itemid”:["001-144115"]}) should be seen as a success or a failure. Some of the key points include:

  • All courts are reluctant to dictate how public funds should be spent. This means that where (as here) the state is expressly relying on cost justifications, the courts will not want to intervene if this can be avoided.
  • As an international court, the ECtHR is even more reluctant than domestic courts to interfere with national-level spending decisions.
  • The principle of subsidiarity, in short leaving compliance with the…

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Gender Based Violence: NAWO panel at the ESVIC Global Summit

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The National Alliance of Womens Alliance (NAWO ) – Sisters of Frida is part of NAWO – Chair Annette Lawson  invited us to be part of their fringe event at the End Sexual Violence In Conflict Global Summit.

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NAWO group at the Excel Centre, Annette Lawson, Sarah Priest, Elizabeth Gordon, Jane Kiraga and  Marai Larasi

It was an honour to be at the same panel with the likes of Jane Kiragu, African Women’s Leadership Network, Marai Larasi, Director, IMKAAN, black feminist anti-VAWG organisation and Elizabeth Gordon, Survivor, artist and campaigner, Non-State Torture. It was chaired by Rt. Hon. Nicky Morgan MP, Minister for Women

here is Eleanor’s speech

Thank you, Nicky, Minister,  for the introduction.

At this Global Summit, we have heard how much violence there is against women in conflict and indeed are likely to encounter in everyday life, with domestic violence at home and harassment and sexual violence in the streets and workplace.

When it comes to disabled women,

“Violence against women with disabilities is a human rights violation resulting from the interaction of systemic gender-based discrimination against women and disability-based discrimination against people with disabilities. It includes family violence, sexual assault and disability-based violence. A range of behaviours are associated with these forms of violence, including emotional, verbal, social, economic, psychological, spiritual, physical and sexual abuses. These may be perpetrated against women with disabilities by multiple perpetrators, including intimate partners and other family members, and those providing personal and other care in the home or in institutional, public or service settings.”

 

(This is taken from Landmark Research: ‘voices Against Violence’ just published last month is Australia )

It sounds like its far from the war zones and disabled women seem so much better here than what women endure in the war zones in conflict? But those women become disabled – emotionally, socially, economically, psychologically, spiritually, physically and sexually deprived – and as disabled women we share the same gender based discrimination wherever we are globally. Research has shown that disabled women experience abuse at least twice as often as non-disabled women. Women who acquire disabilities then have to pick up their lives when they face discrimination not only for their gender but sometimes also from other women, from their own family members and shunted and the state will collude with putting us into institutions. We are seen scroungers, needy and we cant /do not fulfil our roles as lovers, wives and mothers. So disabled women are sterilized ( very often said to be a form of family planning and also because menstruation is such so messy ) and disabled women live in fear of having their children taken away because they are not seen as capable to be mothers. But then there is research that rape of vulnerable women, especially those with learning difficulties, has effectively been “decriminalised”, according to Professor Betsy Stanko a research academic employed by the Metropolitan Police.

According to Womens Aid, disabled women experience abuse at least twice as often as non-disabled women. Disabled women also experience disability hate crime where often rape can be part of the violence. Gemma Hayter, who had learning difficulties was taken to disused railway line where a bin bag was put over her head before she was stripped naked, strangled, kicked mercilessly in the face and then stabbed in the neck.

Last week I read about systematic abuse of disabled people in an institution in Romania

‘In a residential centre for disabled people, 10 women were sharing a squalid room reeking of urine. Two residents began crying. They said they’d been “punished” by staff, beaten because they’d refused to have their heads shaved.’

Officials when presented with the camera footage of the conditions said they believed that they ought to live in the community. In the UK which was a beacon for independent living, the Independent Living Fund ILF –used to support the most severely disabled is closing. They will probably end up in institutions – many of them are terrified for their lives – you only need to remember Winterbourne to understand that.

Austerity policies around welfare benefits and other support are disproportionately impacting on disabled women and and pushing disabled women into more poverty and insecurity.  Many disabled women have been made destitute and homeless as a result of government policy. A bill is being put up by Lord Falconer to make changes to the current law for assisted dying. Disabled people fear that the common perception of themselves as a burden, especially when support services are cut, may contribute to their decision making that they were better off dead. We believe that the focus should be on assisted/supported living not on assisted dying. Not to have a lingering existence where its just being personal care and fed by agency workers who come for 15 minutes every morning and evening.

‘The history of human rights is one of gradual rather than spectacular gains. History also tells us that rights are never just handed down from above, but have to be simultaneously claimed from below’. 

(from’ Women and armed conflict from victims to activists’ (pdf)

Disabled women should be afforded equality wherever they are as human rights – enshrined in UN Conventions, especially CEDAW and the CRPD (Convention on the Rights of Disabled People). Our fight here for human rights as disabled women for Article 19, for Independent Living, is a fight for all disabled women so that we get included as women who has rights to be part of our communities, to be equal to non disabled men and women.

So when we campaign for human rights here for disabled women we are campaigning for all disabled women wherever they might be, globally, in solidarity.

Thank you.

This is Elizabeth’s speech

Thank you Annette and NAWO for giving me this space to speak today. I’d also like to thank Jeanne Sarson and Linda MacDonald from Persons Against Non-State Torture in Canada. They have been campaigning for 21 years for the recognition of non-State torture as a crime and have been contacted by over 3000 girls and women from many countries around the world who have suffered non-State torture.
Non-State torture is a specific form of violence that is missing from the known continuum of violence against women and girls. The torture victimisation that women and girls suffer is invisibilised as it is not recognised as a crime in most countries.
Non-State torture is torture that is perpetrated by private individuals or groups like parents, family members, their friends, strangers, gangs, pedophiles, groups of traffickers, pimps and johns. It happens in places like homes, warehouses, churches, woods, boats, fields, streets and farm buildings.
Classic tortures include: physical, sexualised and psychological/conditioning tortures, chemical and spiritual and relational torture. There are socio-cultural tortures like
FGM, foot binding.
Commercial-based torture includes the world-wide trafficking, sexual exploitation and torture of girls and women for profit, a global industry fed by huge demand. Prostitution victimisation can begin with infants and little girls through to prostituted women who are subjected to torture by pimps and johns. There is an increasing demand for torture pornography. Trafficked children are subjected to torture ordeals
in infant and child crime scene pornography including snuff films and photos. Girls and women who are tortured in any ordeal may then be killed, or left to suffer and die of their injuries.
Here in the UK, the 2012 Children’s Commissioner Report on child sexual
exploitation in gangs and groups, confirms that the vast majority of perpetrators of sexual exploitation and trafficking within the UK are predominately men of all ages and all backgrounds, and those they victimise are predominately girls in this report; from age 11 upwards, to young women.
There is also evidence that spillover domestic violence that can be torture occurs more in military families both during and after wars and conflicts and in the domestic setting is predominately suffered by women and girls.
In my personal her-story, my father’s family, “uncles” and other friends had mostly previously served in the military. Their private group torturing crimes were influenced by their war experiences and the cultural norms of a patriarchal society with misogynistic attitudes. They saw girls and women as their property and they acted with impunity.
My mother’s torture of me was directly linked to the sexualised violence she suffered as a girl in the second world war.
I grew up in a seemingly ordinary family in the UK..I went to school. The home-spun torture and trafficking I suffered was hidden in plain sight.
By the time I was 5 years old I had suffered many extreme life threatening torture ordeals. I had been beaten, repeatedly raped by several men. object raped and been suffocated with a pillow to near death. I’d had water thrown in my face while tied up. I had been electric shocked, drugged and caged. I had been imprisoned for very long periods in a freezing room with no toilet. I had been forced to stay awake through the night, tied to the bed while being screamed at and violently attacked.
One day when I was 5, I made a paper telephone. I went to plug my paper phone into the wall and just at that point by coincidence, like
magic, the house phone started ringing. The mother of a little girl called Johanna asked if I could come to play. This was one of the very rare occasions where I was let out to go to another child’s house.
Not long after this, one morning I was hung, tied by my arms from the bannisters in the hall while raw mince meat was thrown in my face and forced in my mouth. As I choked I was shouted at that I was was nothing and no one. ….This was my normal life. I thought everyone’s life was like this until I was a teenager.
Some while after this ordeal I made another paper telephone. I tried to plug it in the wall again wishing that Johanna’s mom would phone like she did before, but she didn’t call.
I was telling through my drawings and paper model making. I was reaching out, my paper phone was a cry for help.
At night sometimes, the men would come to the house in a black a car or a taxi with the light off. I was drugged and taken out of the house to their “torture parties” The “in home” captivity was 20 years. When I was not at school I was confined in my room for extensive periods. When I was little I was sometimes tied to the radiator.
When I was a teenager, I huddled next to the radiator in the corner of the room. If I moved or the floor boards creaked, the door to the room would fly open and extreme violence followed. Then the confinement period would start all over again. I couldn’t leave the room to go to the toilet. This caused me extreme physical and spiritual pain. Sometimes I used books in ways most people wouldn’t even think of; as
stepping stones, putting them on the floor where the floor boards didn’t creak to make a pathway to the window across the other side of the room so I could look out at the world.
Eventually I did escape, but then the problem I had for many years was finding support that named and recognised the harms I’d suffered as torture.
As Jeanne Sarson and Linda MacDonald say:

“a global gender-based discrimination exists in reference to respecting the human right of women and girls not to be subjected to torture irrespective of who the torturers are–State or non-State…
If women and girls are to achieve gendered human right equality then torture whether perpetrated by State or non-State actors must both be acknowledged and placed on the continuum as specific and distinct forms of gender-based violence that occur in so-called public or private spaces.”

It is our human right as women and girls not to be subjected to torture. Non-State torture needs to be recognised as a specific crime otherwise it stays invisibilised, normalised and misnamed as abuse or assault and perpetrators continue to act with impunity and gender based inequality remains.
This is the poster I made in 2011 for a UN competition on the theme of

“Say No to VAWG” it says “Say No to non-State torture, it is her right to be free.

Say no to non state torture

www.nonstatetorture.org