Lived experience as a BME disabled person
Presented at the ‘Let’s Get Personal’ Conference on Self-Directed Support and BME Communities in Edinburgh
Date: Wednesday, 14th May 2014
By: 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 has been 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.
- 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